Hi all! I found this board recently after many, many hours of research on my condition. There seem to be many knowledgeable people here that truly understand what others are going through. Anyway, for me it began about four years ago. I remember working outside on a cool November day and getting a feeling of lightheadedness and general malaise. I came back into the house and didn’t “feel right” for the rest of the day. The next morning I woke up and everything was spinning. I had severe nausea and was vomiting. I was not able to do anything but lay in bed for the next couple of days (I couldn’t eat or drink anything for two days). The vertigo subsided after the second day or so but I was still dizzy and had a lot of imbalance. I was able to get into my GP and he told me that I probably had a viral infection of the inner ear, gave me antivert and sent me on my way. After about a week I was able to get back to some “normalcy” and return to work. This was a very scary situation for me since I’ve never experience anything like this before. A year later I had a very similar episode and it took about the same amount of time to recover.

Since that first experience with VN I’ve had approximately 10 episodes or so. About two years after the first episode my GP referred me to a local ENT who just checked my head movements in different positions and told me “there’s nothing wrong.” Well, this past August I had another severe episode. After this one I made an appointment with a doctor at a university hospital who was listed as an otologist, neurotologist, and otoneurologist. The hospital is over two hours away but I definitely knew I had to see someone about this problem. Anyway, my initial appointment with the doctor was this past October. I was seen at first by one of his assistants and after I described my symptoms the assistant’s initial reaction was VN. The doctor then came in and discussed my symptoms with me as well. He also said it appeared to be VN but he did say that the number of episodes I experience was “highly unusual.” I had a hearing test, which showed normal hearing. He also scheduled an ENG and an MRI to rule out other possibilities. I had my ENG and MRI on 11/4/04. The MRI showed nothing. However, the ENG showed that the left ear did not have the same “pattern” as the right ear. The doctor showed me the results of the caloric test that were in a graph format. Essentially the left ear had a “flat” reading, which is an indicator of vestibular weakness and is an indicator of VN. Anyway, he told me there’s nothing else that could be done and that the episodes of VN may or may not come back again. He wrote me a prescription for Valium if I do have a severe episode again. He only wanted to see me back if the episodes became more frequent.

On 11/26/04, I had another episode while visiting relatives in Richmond, VA. I was in bed all day on 11/27/04 and my balance was way off. This episode had some vertigo but mostly dizziness and imbalance. It’s over a week later and I still have imbalance especially in the morning when I first get out of bed. A month or so after the major episode in August I started having this general feeling of uneasiness and unsteadiness throughout the day. This is very hard to describe…almost like my head is in a fog. Sometimes when I’m in a crowd or a store I get this feeling like I’m going to run into somebody or something. This new feeling only started a few months ago and I’ve never experienced this even after my previous major episodes. This unsteadiness still continues. I’m getting frustrated by everything and sometimes think I’m the only one who knows what I’m going through. I think that the doctor I saw was OK but didn’t spend enough time evaluating my situation, but I keep wondering if there’s anything more he can do to find out why I keep getting these repeat instances of VN. The Cleveland Clinic is only three hours away and the Pittsburgh Ear and Dizziness Center is only two and a half hours drive away and I’m considering seeing someone there but I’m not sure yet. I’m sorry for my lengthy post but I just felt like I had to write this out and post here. I’m just hoping that someday the episodes will stop and I can return to “normal.” It’s just that I’ve had 4 episodes this year (some more severe than others) and I never really know when they will start. Has anyone ever had repeat attacks of VN? Is this something that’s more common than doctors think?

As a side note, I did run across a recent study published in the New England Journal of Medicine which suggests that methylprednisolone may be an effective treatment for patients with acute VN (here’s a link:

http://content.nejm.org/cgi/content/abstract/351/4/354

Has anyone who’s had acute VN been given methylyprednisolone?

Hi John. WELCOME. I have theoretically been diagnosed with VN (labyrinthitis) and have had it 2 years. I must say, your "episodes" do not sound typical of VN like the specialist said - u can have decompensation periods with VN but not repeated "attacks". Autoimmune inner ear problems spring to mine - have they considered this??? Or possibly MAV? It's just the "attacks" that gets me wondering.

Sorry youve had this so long and are still suffering. We are all here for you xxx

Hi John, Welcome to the Board. The individuals on this board are amazingly knowledgable and supportive. I would have thought I was going really crazy were it not for reading a lot of the archive and current info.

The Brain Fog and problems shopping are normal for vestibular disorders as you read the posts you'll see that for some of us they are the most difficult, as well as the anxiety and depression. Your attacks sound awful, I would check out the other clinics you mentioned.

I started getting dizzy in March, randomly and feeling foggy in head, was able to live threw it until one day it his me hard since then I have been chronic, and unable to live normally. I think it all strated with flu I had in march, my nuerotologist will not diagnose me with Labs but thinks it's BPPV. Anyway, he is willing to work step by step and I think that is important with a Dr. He perormed an epley. And we're taking it from there.

Take Care, you will find a solution!!
Jade :angel:

Hi John and welcome,

I can echo Jade's comment about the uneasiness and brain fog being just part of the drill with this stuff. You will find it hard to go into places such as stores where the brain has to go into overdrive to deal with all the sensory/visual inputs, but press on! Your inner ear has been damaged and the brain is getting wonky signals from it, and that's why you feel so weird. By pressing on and not avoiding those situations you brain can compensate for the damage and begin the process of returning to "normal." Just be aware that it can take months. Like CL, I'm into this for 2 years and there are still blips where I feel "off" and foggy/slightly drunk for a few days. I'm beginning to think it may just be par for the course for me now.

Since you are close enough to the Pittsburgh facility, are you also close to the University of Pennsylvania (I'm betraying my dodgy knowledge of geography in the east here)? You might post a thread addressed to Subs30 (if he doesn't see this and respond). He was treated at one of the balance centers of excellence at the Univ of Penn, and he swears by the facility there. They are real experts. Perhaps you can get hooked up with the docs there.

T

Hi John. WELCOME. I have theoretically been diagnosed with VN (labyrinthitis) and have had it 2 years. I must say, your "episodes" do not sound typical of VN like the specialist said - u can have decompensation periods with VN but not repeated "attacks". Autoimmune inner ear problems spring to mine - have they considered this??? Or possibly MAV? It's just the "attacks" that gets me wondering.

Sorry youve had this so long and are still suffering. We are all here for you xxx

CL..thanks for the information and your support. I've never heard of autoimmune inner ear problems. Is this what you're referring to?

http://www.entnet.org/healthinfo/hearing/autoimmune.cfm

I'm not experiencing any hearing loss. When I feel my "attacks" coming on I get a feeling of dizziness and weakness..almost like I'm getting a flu. If I feel it coming on in the evening then the next morning I'm into full blown vertigo and vomiting. I can only lie in bed in a dark room and try to sleep through the worst. I can't eat, drink, or move about for at least two full days. I've had the majority of my "attacks" during the winter months but have had two bad ones in the summer months. They seem to come about when there is a "viral bug" running rampant in the community. Funny though, the last one I had two weeks ago came on after I was getting over a "cold sore" in my nose. I've read information linking VN with Herpes Simplex 1.

Here's a short health history for me. I'm 44, and had mono when I was 33 and a full blown case of chicken pox when I was 37. The neurotologist (sp?) doesn't think there's any correlation..who knows. Have you read anything about the methylyprednisone therapy? Thanks for your support!

John

jadeearth...thanks for your support as well. My "uneasiness" just started this past September. I just can't believe that the doctor didn't seem to be too concerned after all the attacks I've had. When the severe one's hit I'm totally out of commission for at least 5-7 days. Thank goodness I have an understanding boss. :) I'm frightened to take any vacations or long trips since I never know when it will hit.

Hi John and welcome,

I can echo Jade's comment about the uneasiness and brain fog being just part of the drill with this stuff. You will find it hard to go into places such as stores where the brain has to go into overdrive to deal with all the sensory/visual inputs, but press on! Your inner ear has been damaged and the brain is getting wonky signals from it, and that's why you feel so weird. By pressing on and not avoiding those situations you brain can compensate for the damage and begin the process of returning to "normal." Just be aware that it can take months. Like CL, I'm into this for 2 years and there are still blips where I feel "off" and foggy/slightly drunk for a few days. I'm beginning to think it may just be par for the course for me now.

Since you are close enough to the Pittsburgh facility, are you also close to the University of Pennsylvania (I'm betraying my dodgy knowledge of geography in the east here)? You might post a thread addressed to Subs30 (if he doesn't see this and respond). He was treated at one of the balance centers of excellence at the Univ of Penn, and he swears by the facility there. They are real experts. Perhaps you can get hooked up with the docs there.

T

treefarmer..thanks for your concern as well. Since my ENG showed weakness in the left ear will that ever get better. Does the vestibular system get stronger after the dizziness episodes? My main concern is that the vesitibular balance will never get back to normal :( The University of Pennsylvania is about an 8 - 9 hour drive away...I'll have to check into that facility.

treefarmer..thanks for your concern as well. Since my ENG showed weakness in the left ear will that ever get better. Does the vestibular system get stronger after the dizziness episodes? My main concern is that the vesitibular balance will never get back to normal :( The University of Pennsylvania is about an 8 - 9 hour drive away...I'll have to check into that facility.

Hi John

UPMC has one of the best:

University of Pittsburgh Medical Center Hearing and Balance

University of Pittsburgh Medical Center Hearing and Balance nurse by the name of Cindy

----use the toll free number of 1-800-533-UPMC(8762) and ask to be transferred to extension 72239 and either ask for Cindy or leave a message and she will call you back

Their(UPMC Balance Center) web site is located at:

www.upmc.edu/ear/Balance.htm

Also the Univ of Penn Balance Center is excellent---but 8-9 hours---long drive---not sure---about flights?

Univ of Penn Balance Center web site is located here;

http://pennhealth.com/hup/balance/

:cool:

Ok John - now that you have said you get vertigo with bugs etc - I understand more - getting vertigo/dizziness back with colds etc IS normal for VN. Getting attacks without a bug is NOT normal for VN.

Your balance nerve/centre will always be damaged - as will mine - it does not recover - BUT the brain compensates for the injury - this is what gets people "well" and "symptom free" not recovery of the balance system.

Yes I have heard of predisone being used. My ENT actually vaguely said he could put steroids in my ears or something....um no thanks! I think it is only useful at the ONSET of VN which for you has passed. The "attacks" are not new attacks of VN (if it is VN that you have) but "decompensation" whereby the brain forgets what it has learned. So no, in your case I dont think it would be helpful. Also I'd be wary of such a drug as there are strong side effects.

xxx

Hi John,

Welcome to the board!! After reading your story I was wondering if it is in fact just a nasty case of VN. It has been hypothesised that, in some, VN may be caused by the herpes virus. In your case this might explain the recurrent attacks and the viral feeling you have before the attacks. I'm a herpes sufferer too and know the feeling although I don't get full blown attacks like you describe, although I do feel much worse when an attack is on in terms of disequilibrium and mild depression.

If this is the case, I'm wondering if a daily antiviral med might work for you such as acyclovir. Or apparently St John's Wort also reduces herpes attacks.

Curr Opin Neurol 2002 Feb;15(1):5-10
Magnusson M; Karlberg M
Dept of Otorhinolaryngology, Lund University, Sweden

Peripheral vestibular disorders with acute onset of vertigo

Disorders of the vestibular nerve and end organs are the most common causes of vertigo. In acute vestibulopathy, suspicions of the activation of herpes virus infections as a causative agent are increasing, but no reports on the treatment of such infections are yet available.

or this....

Enhancement of the eighth cranial nerve and labyrinth on MR imaging in sudden sensorineural hearing loss associated with human herpesvirus 1 infection: case report

AJNR Am J Neuroradiol 2001 Aug;22(7):1380-2
Lavi ES; Sklar EM

The case of a 61-year-old woman who presented with herpes labialis, subclinical meningitis, and sudden onset of bilateral sensorineural hearing loss is presented. Contrast-enhanced MR imaging showed marked bilateral enhancement of the intracanalicular portion of the eighth cranial nerve, right cochlea, and left vestibule. Polymerase chain reaction was positive for human herpesvirus 1 obtained from the cerebral spinal fluid, which suggested the diagnosis of viral neuritis.
Cheers....Scott

Ok John - now that you have said you get vertigo with bugs etc - I understand more - getting vertigo/dizziness back with colds etc IS normal for VN. Getting attacks without a bug is NOT normal for VN.

Your balance nerve/centre will always be damaged - as will mine - it does not recover - BUT the brain compensates for the injury - this is what gets people "well" and "symptom free" not recovery of the balance system.

Yes I have heard of predisone being used. My ENT actually vaguely said he could put steroids in my ears or something....um no thanks! I think it is only useful at the ONSET of VN which for you has passed. The "attacks" are not new attacks of VN (if it is VN that you have) but "decompensation" whereby the brain forgets what it has learned. So no, in your case I dont think it would be helpful. Also I'd be wary of such a drug as there are strong side effects.

xxx

CL..thanks for the information. Generally between "attacks" which could be months to over a year I'm symptom free and usually feel fine up until the one I had in August. Like I mentioned previously, they are usually so severe that I cannot get out of bed for 2 - 3 days. During this time I cannot eat or drink anything and generally lose between 10-12 pounds. After the 2nd or 3rd day I'm able to try to get out of bed and maybe eat a few crackers or clear soup and that's about it. It's usually a week or more before I can get back to work and I'm still weak. I've had two of these "severe" episodes this year already. I've also had a couple of "milder" ones where I don't have the vertigo, but do have imbalance, dizziness and fatigue where I have to stay in bed for a day or so, but still have imbalance for a week or longer. I don't know if this cycle will ever stop and neither does the doctor. I'm just very frustrated that he doesn't feel that he needs to see me again...very depressing :(

John

Subs30..great info there! Always good to have a direct contact. Have you ever been treated there? Any recommendations for doctors? My parents only live about 45 minutes from Pittsburgh and I just may try and get an appointment at UPMC. I guess it would be a good idea to bring the results of my ENG, MRI and hearing tests?

scotsman9..great info! I have read about using acyclovir to treat VN. I didn't know about St. John's Wort being used to reduce herpes attacks...I'll definitely try that. I'm doing some research on using acyclovir and it appears there's good info out there. Im just hoping that eventually these attacks will stop. I feel like I'm a freak and everyone around me doesn't understand what I'm going through. When I describe the attacks to co-workers they just can't believe that the doctors can't do anything about it.

Hi John,

Yes, it might be worth a try to have a daily acyclovir just as a trial to see if the attacks stop. A good time to experiment given the frequency of your attacks. Can you correlate attacks with stress at all? Stress of course, can trigger a herpes attack. Another thing might be to take acyclovir or famvir when you feel an attack coming on to see if it stops the attack or possibly reduces the fallout.

All the best....Scott

Hey again John,

I just checked out the link you gave to the NEJM article. It is an excellent paper and very current! I missed this one. Very strong study too as it was a prospective, randomized, double-blind trial. I basically gave you info above that you might have already seen in this paper as it also addresses herpes as a cause - DOH! Thought I'd write down some of the highlights for others to see of these findings as it is the most up-to-date info on VN treatment so far.

Methylprednisolone, Valacyclovir, or the Combination for Vestibular Neuritis
M Strupp et al
N Engl J Med, Jul 22 2004, 351(4) p354-61

Background: Vestibular neuritis is the second most common cause of peripheral vestibular vertigo. Its assumed cause is a reactivation of herpes simplex virus type 1 infection. [It] has an incidence of about 3.5 per 100,000 population. Currently, a viral cause is favoured. The evidence, however, remains circumstantial. Indications are that the vestibular ganglia are latently infected by HSV-1, as are other cranial-nerve ganglia. Recovery after vestibular neuritis is usually incomplete....in one study, caloric responses normalized in only 42 percent in a study of 60 patients. Despite the assumed viral cause of vestibular neuritis, the effects of corticosteroids, antiviral agents, or the two in combination are uncertain.

Results: Of the 141 patients, 38 were randomly assigned to the placebo group, 35 to the methylprednisolone group, 33 to the valacyclovir group, and 35 to the methylprednisolone-plus-valacyclovir group. The number of patients who had complete or partial recovery was 8 of 30 in the placebo group, 22 of 29 in the methylprednisolone group, 10 of 27 in the valacyclovir group, and 22 of 28 in the methylprednisolone- plus-valacyclovir group.

Conclusion: Treatment with methylprednisolone alone significantly improved the long-term outcome of peripheral vestibular function among patients with vestibular neuritis, whereas treatment with the antiviral agent valacyclovir did not improve the outcome. The combination of these drugs was no more effective than methylprednisolone alone. Replication of HSV-1 in the vestibular ganglia may conceivably have already occurred by the time the antiviral drug was initiated (thus it was not effective in this study). Furthermore, there is good evidence that the major damage in vestibular neuritis is caused by the swelling and mechanical compression of the vestibular nerve within the temporal bone, which is also assumed in Bell’s palsy. The anti-inflammatory effect, which results in reduced swelling, may explain why treatment with corticosteroids results in improvement in both disorders.

There was something written in this paper that I didn't like reading however. It said the following: "On the basis of the incidence of this condition, a substantial and permanent unilateral dynamic deficit of the vestibuloocular reflex, which cannot be compensated for by other mechanisms, develops in approximately 4000 people per year in the United States alone." I followed up the reference for this comment which said the following in its abstract (I can't get the full article yet unfortunately):

Vestibular compensation: a review of the oculomotor, neural, and clinical consequences of unilateral vestibular loss.
J Vestib Res 1995 Mar-Apr;5(2):67-107
Curthoys IS; Halmagyi GM - University of Sydney (my university!!)

Vestibular sensory input is just one sensory input involved in the control of functions such as gaze and posture. The recovery of gaze and posture control after partial or complete unilateral loss of vestibular input is reviewed. The relatively rapid and apparently complete behavioral recovery after unilateral vestibular loss was once regarded as justifying vestibular compensation being used as a text-book example of plasticity in the CNS. This review emphasizes how false that impression is: Detailed examination shows that vestibular compensation is not a single process that recovers completely at a rapid rate but is made up of a number of subprocesses that recover to different levels and at different rates. In some subprocesses there is very modest recovery; in other subprocesses there is probably substitution of other sensory input for the affected vestibular input. It also seems that in some instances new behavioral strategies appear to be learned to allow gaze and posture control to operate as if normal. Recent evidence concerning the physiological and pharmacological mechanisms underlying vestibular compensation is reviewed.

Hmmmm....can't see anything in there that says total compensation is unlikely but rather it is obviously not a simple and linear process at all, and don't we know it!!

Sorry this has been a such long post but it's info we all need to know about. Crazy Labyrinth, maybe you can ask London about the methylprednisolone treatment.

Scott :cool:

May try asking them....Drugs worry me though and Ive heard bad things about that one :(

John - this does not sound typical VN - have they looked into menieres and MAV? being symptom free between attacks is almost certainly not VN...ummmm....anyone else got any ideas?

xxx

Subs30..great info there! Always good to have a direct contact. Have you ever been treated there? Any recommendations for doctors? My parents only live about 45 minutes from Pittsburgh and I just may try and get an appointment at UPMC. I guess it would be a good idea to bring the results of my ENG, MRI and hearing tests?

Hi John

Did not go to UPMC since Univ of Penn was much closer---talked to them---in the beginning quite often---think they will want to run new tests---but take old with you---not sure what their exact procedures are---how they do the exam---Univ of Penn---takes all day---if you go to the web site I sent you for them and to their staff page---you see every one of them---during that day---the last person you see---and you spend about an hour with him is the Director of the Balance Center---who coauthored the article in the "sticky" above---Chronic Dizziness"---he is the one who takes all results and decides on what it is you have and your treatment.

Good luck!

:cool:

Hi,

I am in a bit of a rush so have not read ANY of the other posts. But can I just reassure you that what you describe is EXACTLY what happened to me. In fact I would get better, the have another attack of major dizzies and like you would then take a couple of weeks to recover. What I can tell you is this, VN probably started your whole thing going BUT it is not recurrent VN each time as such. Rather that you are having spells of decompensation or possibly have develeloped a mild case of BPPV as a result of VN. VN is a short run virus (circa 3 weeks) its not something that keeps recurring often. So when people say that they have had VN for 3 years, what they mean is that they have had the virus and have failed to make adequate compensation, not that they are ill as such. Hope that makes sense. Any ways I had all the tests and like you showed the weakness in my left ear. For some reason the recurrent episodes have stoppped and now I just get risiusal symptoms, this has taken a few years. Most days are pretty normal but I still have residual symptoms, maybe always will. Oh the other thing that my neuroto mentioned to me with these recurrent attacks is that its a possiblity that it may be caused by gradual vestibular failure, hence the on off nature of it. But I doubt thats the case with you as the damage like me is only on one side. Hope you feel better soon. Oh I also had all the other things you mention and likewsise they lesson over time.

Hello all.

I am glad to find a site that seems to have knowledgeable people experiencing a similar diagnosis as I have. I have been diagnosed with viral labyrinthitis. I am 3 months in and am wondering if I will be living with this for the rest of my life. My symptoms originally included severe cases of vertigo and nausea that would completely debilitate me for a week at a time and then slowly subside the following week. I would then relapse and experience it all over again. I have had 6 relapses and am now in a constant state of vertigo and nausea with the nausea symptoms subsiding in the evening. The vertigo is with me constantly.
I have seen a family practitioner, a neurologist, an ear, throat and nose dr., and a neuro-otolaryngologist. I have had an MRI, 2 CT scans, 3 audiology tests, ENG, and blood tests done. None have provided any additional information on my condition. I have been prescribed Meclizine, Phenergan, Reglan, Valium, and Zophran. Only the valium has seemed to relieve my symptoms somewhat during my extreme week of vertigo and nausea. The rest of the medication just seems to put me to sleep.
My neuro-otolaryngologist is now passing me on to a gastrologist because he cannot figure it out and thinks there might be a potential stomach issue. However, I do not think it is the case due to my continual experience with vertigo. I have not had any vomiting but have come very close several times. I am wondering if it is possibly Minieres Disease or something similar to it.
My current condition is partially debilitating in the morning and early afternoon and I have not worked in the past 2 months. My short-term disability insurance company has denied my claim because I cannot get a definitive diagnosis or treatment plan. I am getting very frustrated because I am far from being healthy and every physician seems to pass me on to someone else when they run out of options. They all seem to have a confused look on their faces when I surpass the time frame they said it would take for me to heal.
From what I have read on the Internet, many continue to have these symptoms for months and years. I have also read that forcing yourself to become active will cause your brain to adapt quicker and the worst thing you can do is stay in bed. With that, I have been thinking about going back to work but I am reluctant in the event I relapse and I do not know how I am going to be able to deal with the debilitating symptoms throughout the day. Does anyone have a similar condition and recommendations for dealing with it on a daily basis? Also, has anyone been prescribed any medication that helps with the dizziness and nausea or what type of physician I could see that would be able to provide some information on treatment and length of time until recovery? Are any of you debilitated to the point where you cannot work?

Any information or advice on dealing with this is appreciated!!
Thanks in advance!!

Hi 6800,

Welcome to the board. You're in very good company here and, you're quite right, most have us have been to hell and back with this thing and as a result have pooled a ton of good knowledge together here. In fact, as a whole I think the professionals should be logging into this site to learn about the *real* issues that come with these sorts off illnesses.

First off all that you are saying is not at all unusual for inner ear disasters such as labyrinthitis, VN and some others. Your symptoms do sound particularly nasty but again not unusual at all. I'm really quite surprised that your doctors are so dumb-founded by your sysmptoms. Just amazing how little some of these pros seem to understand about this. Makes me wonder what they study at university really.

The fact that valium gave you relief is yet another sign that it's vestibular as far as I'm concerned - it was the only thing that worked for me too. Don't listen to this stomach theory - I just cannot see where a doc came up with that. Your nausea is generated from the bum inner ear signals (and possibly anxiety).

I can only say that you'll have to just let this thing run it's course. It sounds like you are already coming down the other side of this thing with the gaps between attacks becoming longer. They get less and less and then compensation eventually happens and you recover completely. It's very hard to give you a definite recovery time but it can be a long road or you may come out of it quickly. I know a guy on here last year was as ill as you describe but was almost 100% again by the 5 month mark. For others like me it's been 15 months but I'm in the 90% region of recovery, I'm back at work and back to full capacity work-wise.

Can I ask how you are in terms of anxiety? Has it created that for you?

Hang in there...you'll be fine even though it's hard to imagine right now.

Best...Scott

Well..yesterday was not a particularly good day for me. As was the case for the last two weeks I awoke in the morning and got up out of bed and the off balance was there again. Not a spinning like in vertigo but an off balance where it's difficult to walk straight. I've had this same feeling since 11/26/04 when I had one of my "episodes." It doesn't seem to be getting any bettern and some days it's worse (like yesterday). As I move about through the day there seems to be some improvement but I always have this feeling of unsteadiness. The neurotologist I saw last month is over 2 hours away so I'm thinking about calling him to find out if I could see a local ENT at least for a evaluation. I certainly hope this passes because it's difficult to make it through each day.

Hi Labyrinth and welcome.

I think its so sad and pretty horrific really that you have seen all these specialists and yet dont have answers. Where in the world r u?

Dont get despondent about this going on for months/years as so far uve only had it 3 - this is early days - u will prob be on of the lucky ones who gets it for 6 mths - so do not panic.

I dont work with it - cos im a teacher and its a physical job - I hope to do part time next year. I am on benefits yes.

We are all here for you so post whenever you want xxx

Hi all, and welcome (newbies) to the Board,

I'm pretty well known on this board. For the benefit of new posters, I've been dealing with disequilibrum symptoms since April 1995, after a brisk walk on a very cold day. My diagnosis has not been firmly established, but it appears that I may have MAV. However, I have also had experiences with BPV, viral infections, herpes, and was exposed to an auto-immune viral infection in the late 1980's - that may or may not have contributed to my head symptoms. I am 40 years old, female.

I have been seen by the top specialists in my area, and have had the gamut of testing.

Although my symptoms fluctuate, to name a few: I am bothered most by a sensation of motion (me or stationary objects) when I am not, visual perceptual and sensory perceptual problems - such as walking from one surface (floor) onto another surface (carpet), or walking from light into darkness, and walking into small spaces (work Ladies Room or shower) and going from wearing my glasses to taking them off (I've had to stop wearing my contact lenses because of the "fish bowl" feeling). I also tend to feel like I am walking to one side, but that can vary from feeling that I am walking on marsch-mellows, to feeling like I am going to tip over, to feeling like I am "too tall" or "to short". Lying down in any direction causes me to spin a lot. Looking down can sometimes make me feel spinny. I get quick jolts of feeling spinny or that my eyes roll. I do not tolerate elevators or escalators well. I could go on.

During initial onset of symptoms, I was unable to do much routinely. Everything threw me off, from stores, to walking, to watching tv. Movies were out. I am still bothered by floor or rug patterns.

Anxiety attacks started almost immediately upon symptoms once I realized they weren't going away. Put myself into counseling to learn to deal with the scary sensations that accompanied being so off balance all the time. Once I was able to get a handle on the fears that came with this condition, I was able to react calmer to my symptoms and push past (test) myself more.

I usually have some form of a headache on a daily basis. In part I feel this is caused by the way I sleep (head elevated now). I used to be a flat-sleeper.

If you do a search on my older user name (Wowwweee) and my current one under the Inner Ear Boards, you will get a clearer picture of my symptoms and history.

What has worked very well for me in the past was a medication prescribed to me called Amitritpyline. It's an older antidepressant, but has been found to work well on some forms of headaches/dizziness. Within three days of taking it, (12 mg each night at bed time) my symptoms completely disappeared. However, I had some alleric reactions to it, so I opted to discontinue.

What helps me now is mixing one or two 500 mg plain aspirin with a teaspoon or two of Children's Liquid Benedryl. Benedryl is an antihistamine, but also acts as a sedator for the inner ear. This mediation is used to treat some forms of dizziness. Dimetapp also works as a sedator. But the Benedryl affects the central nervous system, which is why I think it takes the edge off my symptoms. Always ask your doctor before trying medications, first!

Over time, and once I got a better handle on the accompanying anxiety, I am able to do more now that I did for most of my 30's. I actually flew this year on a vacation. I can bike ride, go to the gym, dance. I DON'T drink any alcohol any more as this exacerbates my symptoms. I get inner ear infections now (got one at the moment) so I try to keep my head and ears well covered in the cooler weather - since ever since that initial cold air exposure, my ears are my weak spot, so I dislike cold or wind of any kind on my face, this includes house drafts.

I still have moments (that turn into weeks/months) where my head symptoms are much more noticeable (like the last two months). This tends to bring on additional anxiety, so I am nervous to drive or go shopping by myself. Stress also exacerbates my symptoms, and that's challenging for me, as I am high stress to begin with.

I feel that I will probably have my symptoms on some level for the rest of my life, as I am going on ten years. I do get periods of alleviation, but I am aware that I have limitations and things to watch out for.

I also have a neurologist that I regularly follow-up with. I have found him to be a good source of information and support. FYI that neurologists also deal with "dizzy" conditions, and are knowledgeable in medications to treat those symptoms.

Just to let you know that you are definitely NOT alone. I have had to make life changing alterations as part of finding ways to cope and deal. I have learned through this struggle that I am a very strong person, and that there is so much worse to have. There have been many blessings that have come out of having to deal with something so impacting and scary and frustrating. I have learned many personal, positive life lessons. Remember, you are stronger than you think.

Take care.

All

Thanks all for the kind words. To answer your question crazylabyrinth, I am in Dallas and have been seeing a neuro-otolaryngologist at UT Southwestern. This physician is supposed to be pretty good but my experience is the more they are recognized, the less time they spend explaining what is going on with you and potential treatments. It is like they just filter as many patients through as possible.
I actually tried to drive to work this morning and I did feel an enormous amount of anxiety the closer I got. I ended up turning around about half way because I didn't think I could get through the day. I am normally a pretty calm person and handle stress pretty well. Needless to say, 3 months of dealing with this condition, the insurance group, the physicians, and the potential of losing my position at work has taken its toll.
From what I gather from everyone's postings, going back to work may not be the best for me or help speed up my recovery. What is also odd, is there is another person up at work that has contracted the same condition. He and I talk about every 3 days or so and he is experiencing the same issues that I am. I feel bad that he also has it, but am glad to have a recovery buddy. :dizzy:
I hope you are right Scotsman9 about the recovery. I am probably sitting at about 50% right now and would give anything to be above 75%. From what I have also read, most contract this in their 50+ years and I just celebrated my 29th recently. It feels like I have aged 10+ years in the past 3 months and my 84 year old grandmother and I see eye to eye now. ;) I now understand that her being able to water the flowers and feed the cat is a good accomplishment. Life definitely has a new meaning to me and a new outlook.
If anyone has any advice regarding how to handle the insurance companies or difficulties with finding a physician that knows what they are talking about, I would appreciate it. Needless to say, this is the first time I have had to deal with a major health issue and I am on a learning curve right now.

Thanks again for the support and best wishes to everyone!

6800,

Ask your primary care physician to go to bat for you regarding the insurance coverage. Your doctor should be able to provide a diagnosis to satisfy the insurance company's needs - even if your symptoms/condition has not been firmly set in stone, there are many causes of dizziness/disequilibrium that he can probably use to meet the insurance guidelines. You should give him a call to push for that. One of the roles your doctor should be playing for you is to be your advocate during times of a medical issue. At the very least, he should be able to provide you with a diagnosis for your medical insurance. At the very most, he should be contacting your insurance company AND place of employment on your behalf so you don't have to deal with this end of things.

I don't blame you about being fearful of driving. I started developing panic attacks while driving because all of a sudden driving felt foreign to me (as did mostly everything else when I started to have these symptoms), and for a while, I literally would not go anywhere unless someone drove me and picked me up. I even developed panic attacks if I was left alone, even if that meant I was alone in the house upstairs and everyone else was downstairs. I understand your anxiety very well.

Just remember that being fearful and anxious is a commen reaction when your balance system is off. It's normal to develop some anxieties and phobias. When you start to doubt how you feel and if you can function, everything becomes uncertain. You never know if you're going to get past the woozy moment or if it will get worse, or when it will come on again. And since everything looked and felt different, nothing felt common or safe.

In the beginning, no-one thought to take into consideration that my anxiety was related to my imbalance issues. That made it harder to deal with my imbalance symptoms AND the anxiety. When helped me initially was to simply accept that I was having anxiety, and then form a plan to overcome it. A lot of overcoming my fears was to find a way to cope with the physical sensations of imbalance. I needed to remind myself that despite my head symptoms, I was healthy. So, I began to try to do more for myself and depend on myself (again) despite the feelings that came with disequlibrium. Examples: going to the store with a family member, even though stores "set me off", and making plans to do things with my friends, starting slowly, meaning that my friends had to come get me or I had to get dropped off. It was a process.

Try not to give in to your anxieties all the time. Maybe, try to drive around the block every day, so you get used to the feeling of driving while feeling off-balanced. Of course, that depends on your level of symptoms. Or, if walking is scary for you, try walking around the house or block - bring a friend if you need to. The idea is to get used to being in motion WITH your scary symptoms. And do it in little steps. It's a difficult thing to get used to, I know.

Try to take care of the things that are in your control to alleviate some stress; like calling your doctor and letting HIM make it right with your insurance company and your place of employment. You may not be able to prevent loss of your job at some point, but your doctor can intervene for you to make things clearer about your situation so that it can be taken into consideration.

As far as finding a doctor who knows what he is talking about - disequilibrium conditions can stem from many things, so you may not have a clear diagnosis, or you may receive more than one. Most people experience some form of benign dizzines at some point in their life - with not ever knowing the real reason for it. That's not to say stop trying to look for a root cause; never give up! But you may find yourself going to MD after MD in the hopes of being given a true name for your symptoms. Personally, I would relish that.

You may want to touch base with your co-worker who also developed these symptoms, and agree to each go to your doctor for the same routine tests to rule out viral infections or airborne illnesses. You both may have been exposed to something that is affecting you both the same way.

xo

John P.

Not much to add to other peoples thoughts....except

VN is considered a one off occurance, and while I guess it's possible to get a second virus which causes VN, it is not likely, and to happen a number of times is unheard of. As people have mentioned, once VN has caused the damage it is permenant but you recover through a process called compensation, it is normal for people with VN to go through periods of decompensation (when the brain "forgets" it's new settings and reverts back to functioning as it did before the vestibular system was damaged) which can be brought on through a number of causes such as physical or emotional stress, or secondary illness (a cold/flu), however, periods of decompensation wouldn't normally be described as "attacks" as they tend to come on slowly and are usually mild in comparison to the original attack, they are usually described as a return of the motion or visually provoked symptoms, and occurs most often in people who are incompletely compensated (ie people who don't have symptom free periods) and rarely result in violent spinning. However, it sounds to me like you are describing a sponteanous attack (violent relentless spinning vertigo which seemingly comes out of nowhere), these type of attacks are considered by some docs to rule out VN as a cause of your recurring problems. This type of scenario is much more common in menieres disease/EH, MAV and autoimmune innerear disease. Though menieres disease usually has obvious hearing adnormalities thats not always the case, and it sometimes only affects the vestibular system (sometimes refered to as "vestibular menieres"), similarly MAV (migraine associated vertigo) can prodominately be a vestibular problem (ie no headache). It's not uncommon for people whos primary complaint was VN to later suffer attacks of endolymphatic hydrops (similar to menieres which is considered "idiopathic EH" and tends to be more aggressive..) as a secondary problem caused by the damage VN left in it's wake. All of these conditions have some form of treatment, and even though decompensation could be the cause of your problems it may be wise to visit a neurOTOlogist (who specialise in the inner ear and connections to the brain) to get their opinion, as with many inner ear problems there are no definate answers and no definitive tests, and many diagnosises are made based on how people respond to treatment... (ie a positive response to a low-sodium diet is considered diagnositic in EH and menieres)..

BennyGibb...thanks for the kind words and support. This past November I visited a neurotologist at WVU health science center. He's attributing my episodes to recurrent VN and thinks that a virus gets into my inner ear and triggers my severe episodes. Like I mentioned before when I had the severe episodes in the past I was generally completely symptom free after at most 10 days..in most cases sooner. This has been a particularly bad year. My last moderate episode occurred on 11/26/04. I was able to get back on my feet the next day (albiet weak). However, ever since this last episode I wake up every morning with an off balance feeling. I am not steady on my feet but I can get around to get things done. As I get going in the morning I start and try to shake the imbalance but it is always there but not as bad as when I get up. Each morning it's the same...imbalance..move about and the imbalance fades..then start all over again the next morning. I emailed the neurotologist last week but no response. I really have to wonder how much he cares about my condition. Does anyone else have a feeling of imbalance in the morning only to have it fade as the day goes along?

John: What your describing is unlikely to be VN, the virus which causes VN isn't just any old virus which happens to travel to the inner, it's a specific virus (or set of virue which to date hasn't been identified) which gets into the blood stream and only attacks certain types of cells (the ones in the inner ear), in the same way as other viruses attack the heart, or others attack the kidneys. To be totally frank VN is not known to recurr in this way, and "recurrent VN" as diagnosis is contradictory, VN with "failure to compensate" or "subsequent decompensation" is more common, but that doesn't really describe your current situation - the main thing used to separate VN from other vestibular diagnosises is that it doesn't re-occur, so most docs consider numerous sponteanous attacks to be a diagnositc finding which rules out VN... And as any testing only shows dysfunction in the inner ear and it does not show the cause of the damage then the only thing to differentiate between VN and MAV or menieres is that in VN you have a single attack, and as your having numerous attacks then VN seems unlikely...I'm not wanting to upset you but maybe you should get a second opinion...

As for the more chronic symptoms, then these resolve through compensation (your brain adjusting to the faulty ear signals), it seems like you've compensated pretty quick before (which incidently isn't normally the case with VN as the damage tends to be signicant and the compensation process slow) but this time it's taking longer... though it does sound like you are well on the way, a course of VRT (vestibular rehabilitation therapy) usually speeds things along a bit (I supprised the Neuro-oto didn't suggest it...) Balance clinics usually have PTs who run the course of therapy for you..

BennyGibb..once again, thanks for the information. At this point I'm really starting to wonder about this neurotologist that I saw. He had a great bio but I don't think he spent enough time evaluating my problem. As a matter of fact, during my initial appt. in October he was just going to write it off as VN and give me a prescription for valium. But I had asked about other "tests" so he suggested an ENG and an MRI. Like I mentioned in my first post the MRI was fine but the ENG showed "weakness" in my left ear. This suggested, at least to him, that it was VN. I never had any other tests such as a CT or others. I'm seriously looking into going to the UPMC Balance and Dizziness Center or someplace in Cleveland, OH which is about 3 hours away. Anyone familiar with any of the Cleveland facilities?

John - I would if I were you - I think you need answers and a prescription for valium is not going to give you any. I too had to ask a specialist for inner ear testing - she was only going to send me for an MRI - its just ludicrous that as the patient you have to ask fo these things.

Oh and yes ive got 24/7 imbalance but it is the same all day.

xxx

the ENG showed "weakness" in my left ear. This suggested, at least to him, that it was VN.

A one sided weakness suggests that there is dysfunction on one side, but it doesn't give many clues as to what caused the weakness. That said, there is a tendancy for VN to cause larger deficits than other conditions such as menieres which even if active for a number of years sometimes only leads to minor eng abnormalities (though thats not always the case). The caloric part of the ENG test is based purely by comparing the responsiveness of one side to the other, and anything within a 20% (greater in some labs) difference is considered normal, and theres likely to be a number of people in the general population who have a larger difference between sides naturally. Though a positive ENG result is considered one of the most important findings it only builds up part of the picture.

The fact is we don't know a whole lot about VN, because by the time the patient arrives at the doctors the cause is long gone - it is presumed the cause is viral based on the fact that a number of patients report suffering colds or flu just before onset, but nobodies ever isolated the virus so we don't know for sure. In reality "VN" may have several different causes (viral, bacterial, immunologic, trauma) in different people, but technically VN is considered viral - and as viruses don't usually hang around, if it keeps recurring then VN is unlikely. So to some extent it seems like your doctor has sent you on your way with the "it's a virus" line without really checking as to what the cause of the recurrent attacks might be.

What may interest you is that there is a theory that rather than being caused by a new virus, that the VN type scenario could (in some cases) be caused by activation of a latent virus - imparticular one of the Herpes family. I also read a research paper a few years ago where they sucessfully treated several patients with menieres like symptoms (ie people who kept having recurrent vertigo attacks - lasting hours to days) with zivirex(sp?) which implies that there may be a subset of people with menieres type symptoms who's attacks are caused through herpes reactivation... however, I think the research was japanese and someone pointed out it had flaws in the studies... still, I thought you may find it interesting... that said, it doesn't seem common and other conditions are much more likely..

Of course thats not to say you never had VN. It's not uncommon for people to suffer from VN and after they recover (sometimes months or years later) they go on to develop "endolymphatic hydrops" (or other vestibular problem) as a secondary consequence, the low-sodium diet is used to reduce attacks in those people.

...What may interest you is that there is a theory that rather than being caused by a new virus, that the VN type scenario could (in some cases) be caused by activation of a latent virus - imparticular one of the Herpes family...
BennyGibb,

While it doesn't sound like the neuro John saw was particularly useful he may have been referring to the viral cause as the herpes virus - from what I've been reading in the lit, this is the beast most likely responsible for VN and Bell's Palsy. That it occurs before, during or just after a flu is consistent with herpes simplex attacks. And as you mentioned and I've posted previously, viral DNA has been extracted from the ganglion of the vestibular nerve and the labyrinth. So who knows? A recurrent condition, while rare it seems, might be a possibilty.

John - yes, if I have any disequilibrium hanging around, it's worse in the morning and lifts soon afterwards. Welcome to the club!

Best...Scott

John - I would if I were you - I think you need answers and a prescription for valium is not going to give you any. I too had to ask a specialist for inner ear testing - she was only going to send me for an MRI - its just ludicrous that as the patient you have to ask fo these things.

Oh and yes ive got 24/7 imbalance but it is the same all day.

xxx

CL..what other tests would you recommend? Would another ENG be of any use at this point? This last spell and my morning imbalance is really starting to drive me crazy. I feel weak throughout the day and sometimes I feel hot (no fever), but my face is flush. Throughout the day I generally feel OK but I always have that feeling of "unsteadiness." It's really hard in the morning trying to get the kids ready for school and fighting with the weakness and imbalance. I emailed the neurotologist last week about using methylprednisone but of course I never heard back from him. I think I'm a closed chapter in his book. I'm wondering if I would get better concern and care from a local ENT??

Thanks!
John

Hi John - I dont necessarily think you need more testing - I just think you need to find a specilaist who will help you and take this seriously. I find it shocking to think a neurotologist is this bad - this is why I dont like to demean ENT's and rave about neuroto's as I dont think it's ALWAYS the case. You could try a local ENT - mine was v good - the testing was not good enough however and they werent interested when I had not recovered after 6 mths of VRT - mainly due to funding - but still...

Any other neuroto's you can see?

xx

Any other neuroto's you can see?

xx

Probably the closest at this point would be someone in Pittsburgh, PA; Cleveland, OH or Columbus, OH. I'll have to check the listings for one. But you're right..I just might have to check out a local ENT first. I keep thinking about the bad experience I had with this neurotologist and the lack of interest he had in my condition. He was recommended by a friend of mine who has Meniere's and she said that he was really good for her and was very interested in her condition. She even told me that she emailed him a few times and he responded back in usually one day. So far..one week for me and no response. I guess her condition was easier to deal with than mine.

Just jumping in here, John: you mention that you feel hot but without a fever. That can be a side effect of anxiety (adrenaline). Most people who experience an imbalance disorder also have some related anxiety symptoms to a degree.

I understand how frustrated you are feeling. I saw the only two neuro-oto's in my area. The one neuro-oto who was supposed to be "top notch" had a horrible bed side manner and was very insensitive and uninterested in my symptoms. He basically told me that he didn't know what to do for me and that I probably will just be like this forever. In doing some talking around, I found out that he also has this same attitude towards two other people; I realized it was HIM and not me - and that he didn't jelp me or offer me much.

I felt that in part, because the neuro-oto that I saw is so highly "specialized" and "in demand" in my area, that he had a self-serving complex that made him forget that he was actually treating people who were scared and symptomatic. I asked him out right if he had ever even experienced dizziness, and he said no. Hm.

I saw a neurologist who was more than happy to review my symptoms, go over medication and possible treatment options, and offer possible diagnoses of what I might have. He also is who I see for follow-ups when my symptoms are really bothering me, and always takes my calls when I am looking for additional support and reassurance when I feel the need.

These are the things that I had done to try to pinpoint a diagnosis that might be causing my symptoms:

Routine physical complete with full blood work up
Eye doctor appointment
Neuro-opthalmologist appointment
ENT appointment
Neurologist appointment
Had MRI
Had EEG
Neuro-oto appointment
Had ENG
Saw a chiropractor to rule out pinched nerve/misalignment
Saw a cardiologist to rule out heart problems
Had the house checked for molds/mildews
Saw an allergist to rule out allergies

Also, for a time, I put myself in counseling to learn how to better deal with the impact of my symptoms and fears that come from feeling off-balance all the time.

I have been seen by one or more of these specialists for a second opinion, and have not yet been given a firm diagnosis but have been given a clean bill of health!

It was explained to me that there are all types of vertigo, and that can cover a wide range of benign reasons for someone to experience those kinds of symptoms. ABout 80% of the population experiences these symptoms on some level at some point in their life - and many with no root cause. I guess too that sometimes a person can certainly have a reason to have these symptoms, but by the time the exposure (to whatever) has passed the point of detection, the vertigenous symptoms are still there or just beginning. Very frustrating.

Sometimes, depending on the results of the search, it may be better just to treat the symptoms. In my case, this may be the only option I have, as I've been dealing with my head symptoms for almost 10 years. That's not to say "never give up", but sometimes a person may just never know the true root cause of their symptoms. For me, after many years of going from doctor to doctor, I get tired of seeing so many specialists only to be told that they are not quite sure what I have (I go in spurts with this). And for me, sometimes it's better not to put so much emphasis on my symptoms and the fear and depression that comes with that and the limitations and life changes that have resulted with those symptoms. Sometimes I need to take a step back and just live, even if it means living with my head symptoms.

All

I hate to intrude as well but may I ask how many of you are currently working with this condition and has working seem to help speed up the compensation period for your brain to adapt? Also, how long were you out of work before you went back to work, ect? I know the symptoms are different with each person but mine seem to be continuous. I have brought up physical therapy to my neuro-oto but he did not think it was necessary. The other problem is that I can only get an appt. once every month because he is in such high demand. Also, for those of you that have had therapy for dealing with the depression, let me know how you went about finding a shrink that could help. I am very new at this and a bit in the dark still.

Thanks in advance!

L6800

Hi L6800

I've been suffering from VN (suspect by the ENT consultant but not confirmed) for over 2 years now, off and on. The first time I became dizzy the doc signed me off work for a few weeks, it cleared up completely for a few months with no physical therapy. The next time it flared up I didn't take any time off work and I think that was a mistake as the stress of dealing with the dizzies and trying to work meant I didn't recover for a long time. So for me, and as you say everyone is different, taking a short time off when the symptoms are worst did help. However now I'm at 50%+ I'm back at work and on a good day I try to muddle through, not putting myself in stressful situations, but remaining active, doing lots of VRT - and I feel the VRT has definitely helped my improvement. As I understand it (and I'm still learning about it all) being active is good, but knowing when to stop and trying to avoid stress (not always possible!) is important.

cheers
DLx

Good luck with it all.

Hi,

I got this when I was doing an intense teachign course - I battled on and did completed it (it was 9mths long). After that I couldnt deal with work so I have done some supply work since but nt much cos there isnt a lot around so I have been out of work for a year and a half. Will get a part time job next year with any luck. I think being active does help but mentally and physically (I get v tired) I find a full time (esp teaching) job just too much at the mo.

xxx

6800,

I have continued to work throughout my ordeal. I have taken Sick Time from work however, if I am very symptomatic, and have left work early on some days when needed. The people I work with in my department are understanding and compassionate. On the days when I am too symptomatic to want to do much, I have peers who will run my small work errands and even go out to get my some lunch.

It was very important to me to keep working and keep to a "usual" routine, even if I wasn't able to function at 100% due to symptoms or anxiety. For my mental health (for me), it's important that I keep as normal routine as possible. That helps me feel productive and it strengthens my resolve for ability to cope.

Keeping my normal work routine also empowers me to help me overcome my fears and anxieties that come with having this woozy head. I have to drive to and from work, and I do have to interact and move about on my job. Some days this is VERY challenging, but I manage despite my "what if" fears. Some days even walking to the Ladies Room is a struggle. But going to work and performing my responsibilities keeps me moving, whereas at home I might not be so active during the more symptomatic moments.

I think over time, my symptoms have either lessened or I have adapted. Being at work gives me continual stimuli on some level - whether it's allowing me to get out of the house for a REASON, making me drive to get there, walking, focusing, concentrating, etc. I am always doing something, even on the days that I prefer to sit at my desk. I am not sure if this is causing me to compensate more or, again, my symptoms are just lessening with time. I honestly think it's both.

Initially, my symptoms were continuous. Over the years, I have gone months and almost an entire year at one point with no symptoms that were bothersome. I still have stretches of time where I get no alleviation (like the past two months, I mean, COME ON!).

I was very depressed and very anxious over my symptoms. Initially, my anxieties were so overwhelming that I knew I needed to get some grounding on that, so I located a therapist in my area that specialized in treating panic disorders. Through this therapist, I learned a breathing techqniue to help me relax my body in times of panic attacks. That was the best tool for me at the time, and I shortly discontinued my therapy with him once I got a handle on dealing with the panic attacks. I knew that I was going to have to put forth hard work on overcoming the physical sensations of panic, so I decided to focus on that on my own.

I continued to have depression and anxiety - in part related to my symptoms - so a few years later, I located a Social Work counselor to work on finding new ways to react to my stressors and different ways to look at things. Being able to look at situations a bit differently, and "practice calm" in times of stress, has helped me have a better outlook on everything. I am normally a glass half-full kind of person anyway, but at times, my symptoms and anxiety did get the better of me.

Having worked in the Mental Health field for a number of years, I have found that Social Workers relate to clients on a more meaningful or "social" level than psychiatrists or psychologists, which is why I looked for a Social Worker to deal with my issues. I wanted someone who specialized or was used to treating adult females with anxiety disorders, but also a counselor who was well rounded in dealing with family and social issues as well. I called a few names I picked out, and made a decision based on their response time to get back to me, how they answered my questions when I was screening them, and the level of connectedness I felt through the initial phone call. I also wanted someone who took my insurance so it was partially covered.

Counseling did wonders for me in terms of helping me emotionally cope with what I had to. So does keeping a normal routine.

Very well put wowweee, summed it up beautifully and I agree entirely!

All

Thanks for the great feedback! I think I am going to go back to work on Monday and see how I do. It seems that the more I spend time at home the worse my anxiety is. I do notice that when I am forced to do something, it doesn't necessarily make the symptoms subside but forces my brain to focus on other things. I will get glimpses of what is was like to be normal and it gives me a hint of motivation that helps me through the day.

Some other things that I have found helps me throughout the day, is doing the small things that everyone takes for granted. For example, eating healthy, not drinking, taking your vitamins, ect seems to have more of an effect on me now than before. A friend even suggested to get a professional massage because it helps him relax when he is stressed out. I guess the glass half full theory is that this has caused me to stop drinking and live a healthier lifestyle even though I still feel this way. Needless to say, I will never take my health for granted again and will lead a much better lifestyle as I get better.

Anyway, thanks again for all of your advice and best wishes!


LB6800

I think that finding the right "balance" (pardon the pun) is important in terms of a "normal routine". Doing my course for 9mths whilst dizzy was dire for my mental health to be honest - it was TOO much and I was entirely drained. I think for me, part time work at the mo is best - it gives normality yet hopefully will not drain me when my resources are at a low anyway. Everyone is different but I simply could not have continued with a full time work and been entirely "normal" with this - it would have stretched me too far and I would probably be in a worse place than I am now.

xxx

Labrynth6800

Cheers, here's to carrot juice and vitamins. I totaly agree that it is important to keep yourself supplemented because this whole thing put body under more stress. I wish you well at work. That is great!!

I ADMIRE so much everyone who has been able to work and deal with this. Wowee I read your post, I don't know how you do it.

I was able to get threw a huge exam and work over 40plus hours a week when I was just dizzy and really did not know what was wrong.I just kept ignoring it. It was when I could no longer walk straight and started having panic attacks that my body said no more and then more and more symtoms appeared. It was like my body helt out for the exam and everything else and the day before I got my results went haywire. I tried to work but couldn't. Hope to start slowly again in January and hoping SSRI gives me some mental and emotional releif.

It is a fine balance between challenge and relaxation so you can heal. I feel my symptoms are slowly clearing. Actually today I made a hard descion based on all this (there have been a few) to sublease my apartment in LA for 3 months and stay up here in nor cal with my mom. (32 and w/mom again :) But that's ok. I am trying to accept it because the more I resist the more stress I create and as soon as I made the descion I felt a little better. Point being we are all different and the inner ear effects us all in different ways as well.

JADE :angel:

I'm self employed, and was before the dizzies so it makes life easier. It does become tricky when I have to visit clients sites, being wobbly and having to explain does sort of destroy the image I need to (or feel I need to) put across. I have some very understanding clients...but I do work very hard (12-14 hours everyday).. so they get their moneys worth.

In some respects I really wished I was employed somewhere when the dizzies started as even though sometimes it would be hell and I'd have to take time off work, I think it would at least get me out and about, and I think I may of recovered quicker if I wasn't sat at home staring at the screen all day..

....how many of you are currently working with this condition and has working seem to help speed up the compensation period for your brain to adapt? Also, how long were you out of work before you went back to work, ect?

Hi 6800,

I was in the middle of a lot of laboratory work and recruiting subjects for a clinical study I was involved in when this hit. Everything just grinded to a halt and I was out of action for 6 weeks initially. I then slowly got myself back into work again although I could do very little and sometimes nothing. Working on a PC was impossible. Amazingly I worked as a demonstrator for some nutrition students for one solid week even though i was terribly dizzy...still it gave me lots of confidence again knowing that I could still teach something. It was important for me to feel normal again to some degree, like I still had my life. It really felt like everything was taken away. I was also working as a cook in a busy kitchen. I haven't been back since and don't think I will really.

Best...Scott :cool:

6800,

You really paralleled my thoughts with your recent post about doing the smaller things that people take for granted.

THAT has become one of the biggest eye openers for me, although I have always been one to be appreciative and thankful.

Since dealing with my woozy head, I have learned to love the little things in life so much MORE, and I share that with others all the time in big and small ways. On some levels, a new world was opened up for me.

My symptoms have made me a kinder, more compassionate person. I am more tolerant of other people - because you truly never know what someone else is also dealing with. I have learned that I am stronger than I know, and I have a strong will to persevere in the face of struggle. I know that I am not a quitter, and that's okay sometimes to not push myself when I simply need to rest. I have learned to sort out what is TRULY important in life, and try to let the nuisances slide.

I've learned to accept myself for who I am RIGHT NOW, and that the people who really care about me love me and accept me for who I am, limitations and wooziness included. I've learned that it's okay to not be able to do everything this very minute (even though I want to), and that baby steps will get me there, even when I am afraid.

I have learned to speak up when I need help, and learned to gracefully state my point as it pertains to my symptoms without guilt.

I've learned new ways to react to stressors in my life, and and have learned that the better I treat myself physically and mentally, the better I feel about myself and the better I function, even with symptoms.

I've learned that it could be SO MUCH worse, and that despite my symptoms, I am blessed wuth good health. And that even though the quality of my life may have been impacted in some ways, I have found other ways to express my joy and continue to live zestfully, if not always energetically.

Please keep us posted on how you do at work. I have found that the more routine things that I keep focused on, that even though I am very aware of my symptoms, I can function with them. After a while for me, it was no longer "surviving" each day, but actually living each day.

Hugs to all.

Must say I really admire you wowwweeee. I think many people have bad thinsg that happen to them and dont learn from them, but you quite clearly have.

I must say I will also be like you - there is no way my life will be quite the same after this. I have also learned a lot of things. I have always been a considerate person but I am even more so now. If a friend is in trouble (and particularly someone who has been good to me) I will give them everything because like you say Wow, you dont know what they are going through and I have always had the policy "treat others like you would like to be treated yourself" so I always try to do just that.

At the moment because I am still v much in "survival mode" I'm not at the appreciating small things stage, but I know I will be and boy, the things I once took for granted and couldnt do during this head monster, I will do again with such joy. Corny but true.

The list goes on - the last 2 years has made me re-evaluate everything. It will change the way I see life and the world and I hope I will be a much better person for it.

Hugs xxx

Labrynth6800

Cheers, here's to carrot juice and vitamins. I totaly agree that it is important to keep yourself supplemented because this whole thing put body under more stress. I wish you well at work. That is great!!

I ADMIRE so much everyone who has been able to work and deal with this. Wowee I read your post, I don't know how you do it.

I was able to get threw a huge exam and work over 40plus hours a week when I was just dizzy and really did not know what was wrong.I just kept ignoring it. It was when I could no longer walk straight and started having panic attacks that my body said no more and then more and more symtoms appeared. It was like my body helt out for the exam and everything else and the day before I got my results went haywire. I tried to work but couldn't. Hope to start slowly again in January and hoping SSRI gives me some mental and emotional releif.

It is a fine balance between challenge and relaxation so you can heal. I feel my symptoms are slowly clearing. Actually today I made a hard descion based on all this (there have been a few) to sublease my apartment in LA for 3 months and stay up here in nor cal with my mom. (32 and w/mom again :) But that's ok. I am trying to accept it because the more I resist the more stress I create and as soon as I made the descion I felt a little better. Point being we are all different and the inner ear effects us all in different ways as well.

JADE :angel:

Jade:
Was touched by your comment of making the decision to be with mom again.
I was hit with this when I was 41 and I can't tell you how many times I cried on my moms shoulders, how many times she would give me a back rub. Moms are always there for you no matter how old you are. Sometimes we still really need our moms. Now that I am much better, I am, once again, able to help my mom out.
Be well....

all the best,
Kathy

CL,

I remember one afternoon on a beautiful sunny day, needing to sit inside on a big oversized chair because that's all my woozy head wanted to do.

Having worked in rehab facilities, I have seen what illness and injury can do to a person's body - and I have seen people so much worse off than we, still be able to find a reason to smile despite their challenging situations.

With that in mind, I remember sitting in that chair that afternoon and thinking how lucky I was to be able to FEEL the sunshine on my legs through the window and HEAR the birdsong outside. Such a little thing to some, but such a big things to others, like for the people I had gotten to know back in the rehab days.

It's difficult not to feel self-pity and not to feel impatient, especially when we remember the "before" person we used to be. But life is so much better and fuller when we strive to be who we are NOW, even with limitations.

I try to be grateful and thankful for everything, even on the days when I am feeling miserable.

CL, I keep you in my thoughts often. xo

Thanks Wow, that is my mantra for the day perhaps the year. :)

But life is so much better and fuller when we strive to be who we are NOW, even with limitations.

Thanks Jade :angel:

I'm glad you found something from my post helpful. It took me a while to get to the point where I am calmer about my symptoms, but I got there.

It isn't always easy - my head has been VERY troublesome the past two months, and just wants to be the center of attention. Oh, this woozy head of mine.

Good posts everyone!

Well, I was told by the leading otolaryngologist in Dallas (Dr. Peter S. Roland) that he doesn't think I have a vestibular problem which leaves me at a very confused state. He said that there are other tests he could run but my symptoms are not typical of someone with a vestibular problem. The reasons mainly deals with the continual problem of nausea I have been having even though I am continually dizzy all day. The nausea subsides throughout the day but the dizziness is constant. He has set me up with an appt. with the leading Gastrologist in Dallas on Tuesday but I get the feeling I am getting the run around again. I spoke to the nurse for this Gastrologist about my symptoms and she said she didn't think it was anything related to my stomach either but maybe the Dr. could help with the nausea.
For the hell of it, I made an appt. with my Ear, Throat, and Nose Dr. and he pretty much told me that when he doesn't know the answer, he sends them to Dr. Roland and there was nothing he could do. Very frustrating....

I also made an appt. with my family physician to get a phyisical so I could start ruling out other potential risks. Fortunately, my family physician has not given up on me and is running a slew of bloodwork, EKG, ect to check my other systems. I do have relatively high blood pressure but at the upper end of the norm. My fears now go back to the spot they found on my brain on the MRI and if it is potentially a cause. Even though I had 3 different Neurologists say they didn't think it was anything, they all said they could not rule it out completely.

I still think that it is a vestibular problem because it is the only thing that makes sense right now. Besides, it is kind of odd that a co-worker up at work got it almost the exact same time and has been out of work exactly as long as I have. He unfortunately is way behind on seeing specialists and his neurologist is sending him to an ear, throat, and nose Dr. next week. Needless to say, been there, done that... He and I keep in constant contact but the only treatment plan and explanations he is getting is limited and his physician just continually switches medications on him until something works or he gets better on his own. Our symptoms were very similar when we were in the extreme phase of our illness but now we have slightly different symptoms. He doesn't have the continual problems with nausea like I do and he is better in the morning, while I am better in the evening. Regardless, it is nice to go through this with someone else.

Anyway, thanks all for the great advice! It gets very difficult at times to remain positive when you are in the dark but that is when it counts the most. I think I might be changing my logon name to Confused6800. ;)

I like your thought about doing what you can now Wowweee. I am just a bit stubborn right now and having a bit of a rough time keeping that a consistant thought. Compared to everyone else, I seem to be relatively new to the game and trying to adjust. The glass half full theory would be that if my condition is not a vestibular problem, then maybe it is something that might be easily treatable. Who knows...

Regardless, I have still decided to go back to work on Monday. Hopefully, I can be somewhat constructive while trying to find answers about my condition.

As alway, I appreciate your thoughts and feedback.

All the best!

6800

Hello 6800,

In short, based on what you've said before about your symptoms - I just re read your first post - you need to find a different neurotologist.You just do sound like you have an inner ear disorders or MAV or some such condition. I guess there are less good neurotologist, just as there are less good anything else. In your shoes that's what I do. I think a gastroento is about as likely to be able to deal with a dizzy disorder as a chiropodist. I guess, occasionally a stomach doc might hit on something - a condition that could affect both the stomach and cause vertigo, but I really don't think it's the first port of call for a diagnosis.

It isn't as troubling as it looks that you've seen a batch of neurologists and one neurotologist. Neurologists frequently don't know what to make of dizziness, ENT's definitely don't, and as I said I guess your diagnosis is only as good as the neurotologist you go to. I don't know where you are in the world but maybe you could try and get a recommendation for who to see. Often, if they can't find anything at all on the tests, they look at vestibular migraine as a diagnosis. Did the neurotologist not even suggest that?

Anyway, for what it's worth, that's what I'd do in your shoes,

best,

hbep

Just had a really, really bad experience at the dentist. I was feeling just a little off balance when I woke this morning and as the day went by I started feeling better. Well I had a dental appt. this afternoon for a filling. I was in the chair for probably about an hour and a half and when I got up I had a very difficult time standing. It's all I could do to get to the counter and check out. I was able to drive myself home but it was very difficult. I'm almost at the end of my wits with this thing and it's driving me crazy. They want to do a couple of more fillings next week and I'm thinking about delaying them hoping I would feel better. I made an appt. with a local ENT next week but I doubt anything comes out of that. The neurotologist I saw last month is two hours away and he wasn't much help when I did see him but I'm wondering if I should go and see him again??? Any suggestions?? I just want to lay my head down and cry...

...."Any suggestions??"...

Same one as before UPMC Balance Center

---it is just to complex a issue---for one person(doc in clinical practice)

---takes a medical team(who do research & Clinical work)---they exist at Medical Univ---UPMC--is one of the best in this area---not quite up to Univ of Penn---but excellent---thought you said parents were 45 min from UPMC?

:cool:

Yes..I think you're right in trying out the UPMC. I know it's right up there with the best in the country. It's just getting myself in the mindset to call and get an appt. But after the experience I had to day at the dentist office I know I have to do it. But it makes me wonder, since I did see a neurotologist already will another one do any better. I guess there are good ones and bad ones? I was checking out the UPMC staff directory and it looks like there are some really good neurotologist's there.

...."will another one do any better"....

That's not it---no one person/specialty has the answer on this one

---if it(UPMC Balance Center) is anything like Univ of Penn Balance Center---that(Neuroto) will be only one of the medical specialties you will see/be tested by

---at the Univ of Penn Balance Center---each person entering---is told to plan on spending the day there---besides the various tests/testing--you can(depending on your symptoms)be set up to see a Psychiatrist, Neurologist, Neurotologist, Ophthalmologist, ENT(quack-quack), VRT Tech, plus some I forgot---(and any other medical type they think you should see---may take more then one day--if that is the case)---after they have their go at you---and the test results are in---the last person you see is Dr Shepard the guy who coauthored the "Chronic Dizziness" article in the "Sticky" info archive---he/plus his team---give you the news---good or bad---and what you are to do---to make it---better---if that is possible---which can run the gamut---from VRT's to surgery---but you should be aware---and they will tell you---it is for the most part---with few exceptions---a guess---with a high probability of being accurate---for me it was---but I'm sure there are others---where it was not.

You should talk to the UPMC Balance Center---to see what/who you will see

You can continue----hoping for the best while seeing the least--- or----you---can ditch the "medical easter egg hunt" ---&---get to the one of the "Centers of Excellence"------the choice is yours & always has been!

:cool:

Hello all!

Well, I went to work on Monday and it was not a bad experience. I probably had the best day in a month as far as my vertigo and nausea is concerned. It felt like I had taken a step forward towards recovery. I still experienced a couple of moments that was questionable today but overall, it has been positive. I saw a Gastrologist today and he confirmed that he did not think there was anything wrong with my stomach. I just really think it is going to take a long period of time before I am even close to 100%. Right now, I am sitting at about 60% - 65% on a good day and 40% - 45% on a bad day. It is still much better than when I was at my worst. My nurotologist does not seem to offer much advice and has a poor bed side manner but is supposed to be the leading expert in the area. I made another appt. in mid January with him just to give him a progress report and in the event I regress. My greatest fear is that I relapse again but I think that remaining active at work will help speed up the recovery.

I wish everyone the best.

6800

6800 so glad your experience at work was ok!!!! That is huge as far as I'm concerned. Sound like your doing better. It's slow progress with this stuff but your on the way. :)

Jade :angel:

Hi 6800,

You are describing my "trajectory" out of this mess. Really terrible/shocking start, then back to work after a while (about 6 weeks) still feeling crummy but 40-60%. All good signs. There will probably still be setbacks but don't let them worry you. I promise you'll be in the high 90% soon enough and on to 100. I think staying active and getting back to work etc is really brilliant...it'll help pull you out of this quagmire much more quickly.

I'm really happy today. We just had our Christmas party and I sank 3 bottles of lite beer....and feel normal. This would have been impossible last year. In fact, just being at the party would have been impossible I was so freaked out.

Cheers...Scott

Hi 6800,

I'm really happy today. We just had our Christmas party and I sank 3 bottles of lite beer....and feel normal. This would have been impossible last year. In fact, just being at the party would have been impossible I was so freaked out.

Cheers...Scott

YIPPPPEEEEEEEEEEEEEEEEEEEEEEEE Scott :D Am chuffed for you. Know what you mean about being in the party last yr - whenyou say "freaked out" -anxiety or dizziness wise? xx

Hi CL,

Yeah....freaked meaning just not feeling confident in myself, my body...everything really. And I would never know when a feeling of panic would wash over me. This would happen if I was just excited. So I would be chatting to someone trying to appear normal while all the while I was feeling dizzy, eyes jumpy - lol. What a mess.....wild horses couldn't drag me back to that period thanks very much.

Scott xx

Ah ok think Ive got you...I dont get the anxiety stuff in situations like that - its just the dizziness but v v uncomfortable...I avoid any social stuff like that esp at night cos of this dizziness. Yuck.

Go on...have another beer! xxx

Excellent Scott!! That's awesome about the beer. Who would have ever thought we'd get so excited about such a mundane thing as being able to have a couple beers and enjoy yourself? As you know I've always been a fan of a glass of wine or two in the evening with dinner, and I know that more than once that wonderful elixir has helped me to calm down and not think about whether I'm dizzy or not, etc.

In your post to CL about the anxiety you felt last year, boy that hit home. I still get that feeling sometimes when I'm excited, like the anxiety is going to make me dizzy or faint or something. It's kind of disarming. But I guess not really so bad because I never actually faint or get dizzy! What a mind trip this stuff is.

T

Hi Terrie,

It actually took me quite a while to realise that it was genuine excitement about something that was kicking off the panicky woozie head last year. I kept thinking it was the dusting of chocolate I had just had on my "decaf" cappuccino that was doing it or the salt in the bread I just ate. I was just searching (paranoid) for things that kicked it off and, most of the time, it was just excitement - very weird these anxiety conditions. Labyrinthitis really put the screws to me on this front. At least, for now, I'm feeling calm, cool and collected until the next dose reduction. Can't wait. *sarcasm*

CL....looking forward to more beers that's for sure! One week today and it's LL time....looking forward to hearing their advice on this for you.

Scott x

Scott,

LOVE that being paranoid about a dusting of chocolate on your decaf cappucino!! I can totally relate. Though before this inner ear crap I never had any sort of anxiety or depression disorder, I've always been an on-the-go type A sort who gets excited (in a good way) about stuff. Now with this inner ear stuff, getting excited sometimes just makes me start thinking "uh oh. do I feel it coming on?" You know the drill. It's such a pain the in *ss because when I start to feel like that, I have to remind myself that this is what excited feels like and it has nothing to do with inner ear. Know what I mean?

T

Hmm I find that with this anxiety im getting I get "hyped" so im rushing everything (a bit manic) - it comes in patches. This typical??? Afterwards I feel quite knackered! xxx

Yeah, CL, in my experience it's typical. I'm sort of a rushing around type, so I had to remind myself to slow down while compensating, and ultimately it helped (for those times I could actually get myself to do it!!). Still have to remind myself. Ah, it's better to take time to smell the roses anyway!

T

Though before this inner ear crap I never had any sort of anxiety or depression disorder, I've always been an on-the-go type A sort who gets excited (in a good way) about stuff. Now with this inner ear stuff, getting excited sometimes just makes me start thinking "uh oh. do I feel it coming on?" .... Know what I mean?
Hi Terri,

Oh ya, do I ever know what you mean. Exact same deal with me. Before my inner ears took a dive, I NEVER had anxiety or depression issues. Just normal stuff that would come and go in a normal way. I certainly wouldn't lose sleep over it that's for sure - or wake up with heart palps!! I use to drink strong short blacks - no probs. A short black now would probably put me back in the ER - LOL. Decaf all the way!!

CL...I don't get a manic feeling if it starts happening...more a freaky scared feeling. At its worst many months ago now, it was near panic.

Fun stuff!! S x

Cl, interesting that you mention the manic thing, I felt that on my small dose of lexapro to the 100th degree, thus anxiety, I find I try to rush things because I am uncomfortable. I am really working on trying to slow my system down, its just so revved up from always dealing with balance. Deep Breathing really helps me lately, its all about calming. Sometimes moving fast seems like the only way to deal with the anxiety, you're trying to wear it out so its not surprising your tired after.

CL have you tried an anti anxiety med?

The other day I walked by a starbucks and saw the long line of cofee drinkers, and I thought an expresso could seriously cause cardiac malfunction. They think I am a freak at the cofee places, I order a decaf latte and I'll say again and again, decaf please, please make sure its a decaf, that is a decaf.Decaf, yes, Deeeeeeeeecccccccccaaaaaaaaafff!!

Jade :angel:

LOL - funny Jade. I was a bit like that too as I reintroduced decaf coffee. Was paranoid they'd screw up and give me a quadruple shot of the real thing. S

Hi all - Jade - havent tried a med no but will ask my specialist next wk for their opinion.

Just woken with a fluid filled left ear - 3rd time since lab - convinced I have some kind of ET tube problem in there. Canonly hear vibration of noise. NOT what I need before LL :)

xxx

CL...sounds like there's def something not right in there with this fluid thing happening. I never had anything like that going on myself. Maybe it is some sort of allergy in there holding you back??? Does ETD cause this fluid thing? Don't know much about it.

Finally got hooked up to broadband - everything flies on this PC now....microphone def coming.

S xx

Fantastic re: BB.

Yes ETD can cause build up of fluid. Dotn think its allergy related - well, I basically think that when I get a cold or congestion, my left ear cannot drain properly - generally I get this out of the blue though it can be linked to colds.

Off to steam! xxx

[QUOTE=scotsman9]Hi Terri,

Oh ya, do I ever know what you mean. Exact same deal with me. Before my inner ears took a dive, I NEVER had anxiety or depression issues. Just normal stuff that would come and go in a normal way. I certainly wouldn't lose sleep over it that's for sure - or wake up with heart palps!! I use to drink strong short blacks - no probs. A short black now would probably put me back in the ER - LOL. Decaf all the way!!


Scott,

No kidding on the decaf all the way. I drank decaf several years ago then had inched my way back up to regular. I love coffee, but am still only a 1 cup (maybe 2) per day. Theeeeeennnnn, last year when all this b.s. hit and before I was really diagnosed I had one of those anxiety rushes (on a trip to Seattle no less) which TOTALLY FREAKED ME OUT. You know the drill, the whole rush out of nowhere, flushed face, feel like you're going to faint, and your heart races. Well, I swore off regular coffee then and have never looked back. Luckily, I live in the Pacific NW where good coffee (and microbreweries!) is king, so you don't have to look far to find great quality decaf (The birth of the modern coffee era with Starbucks happened in Seattle, just 180 miles north of me). But I totally believe it was that anxiety experience, an experience I'd NEVER had before, that has to this day left me with that snake-bit feeling. Any inkling of it and I'm constantly looking over my shoulder, so to speak. Such a huge drag.

T

Hey Terri,

We have this coffee shop near the university called Campos Coffee. This guy has been voted one of the top baristas in Sydney. And luckily even the decaf is fab. Make sure you get "Swiss water" decaf only if possible. No chems used in the process of decaffeinating the beans - just water. Too bad I can't shout you (an Aussie term) one over at Campos!

S

Hi scott - I have had only decaf tea/coffee for years - interested about the chemicals you say they use in the process - I wonder if there are any UK brands which dont have these chemicals.

In the UK we use "shout you" also. "Shout you a beer etc". Lol.

Tlk sn xxx

Hi CL...part of my study is developing films in a dark room! So a few minutes ago I was standing on a stool taping some paper over the red light in the dark room to darken it more and all of a sudden "WOOSH"....I felt faint, dizzy and freaky for about a split second. And now the words on this screen are "swimming" a bit. Yuk...feel tense....but it's going away now. Not sure what the h*ll brought that on. The dark maybe???

S xx

Don't you hate it when you get a new sensation. You can just feel the anxiety going up!!! Good thing that most of the time, these are short lived!!

Hello All!

Well I finished my first week of work and I will say that it has definitely helped my progress. Of course I am alway leary about how I will feel every day but thus far I think I have improved a level with my dizziness. I went a saw a Gastologist last week and he agreed that he did not think there was anything wrong with my stomach. He prescribed some Protonics to help with the nausea but disregarded what my neuro-otolaryngologist thought. I also found out some additional info on the 2 other individuals that got it up at work. One lady caught it last year and was out for 3 months as well. She and I went back to work the same day but are nowhere close to normal. She said that it took her 6 months to get back to normal. This is encouraging to me because I now have a new goal and something to look forward to. Ironically, Because I had done so well throughout the week, I tried to sleep in a bit this morning and am paying for it now. It seems that once you take it for granted even for a bit, it kicks you in the head and reminds you not to get too exited yet. I am a bit dizzier this morning than I was the rest of the week.
Also, being I have had such a difficult time with my neuro-otolaryngologist, I wanted to get with a physician that not only knew what I had, but also could offer more advice on treatment. I was told about these special male clinics around the US that are suppose to have the best experts on everything. Apparently, people go to these clinics as a last ditch effort to get some answers. Deep down, I know the reality is that there is not much they can do for you but I would like to explore this option. I was wondering if anyone had heard of these or visited one. There is supposed to be one in Arizona but I have never heard of them.

6800

Hi CL...part of my study is developing films in a dark room! So a few minutes ago I was standing on a stool taping some paper over the red light in the dark room to darken it more and all of a sudden "WOOSH"....I felt faint, dizzy and freaky for about a split second. And now the words on this screen are "swimming" a bit. Yuk...feel tense....but it's going away now. Not sure what the h*ll brought that on. The dark maybe???

S xx

Scott,

Are you okay now? I've gotten that a couple times. Most recently about a month ago, I bent over to set something on a desk and got that flash of nystagmus and feeling of "about to spin," which lasted, like you said, only a second or so. But of course then the mind races with what the h*ll??!! Why is this happening?? Then you wonder about it for the rest of the day. Isn't it lovely?

CL -- you can find that type of decaf coffee I'm pretty sure just about anywhere where better coffees are sold. Just make sure the decafeinating process is a "Swiss water process" like Scott said.

T

Hi Terri,

Yup...ok now and was fine by the time I got home. Thanks for asking! I must have been tired too...just woke up from a 9.5 hour sleep. Too much....just call me Rip Van Winkle! Interesting how you get the eye nystagmus breifly...mine feels more like the beginnings of a panic attack....which never takes off luckily. But this worries me in that I wonder how on Earth I'll dump the SSRI. Will I be left with a life of panic attacks appearing out of nowhere? I must soldier on with the eye exercises too to clean that up as well. Just hate bringing on ANY symptoms.

6800 - glad you are making progress. It's all normal progress too from what you are saying. Hope the 6 month mark ends up being your farewell party for this monster.

S :cool:

Scott - most def the dark!!! I couldnt stand a dark room! Have enough probs walking down my path at night! The dark is just horrible for me! Glad ur ok now. My diz is really good - how ironic re:london...hoping it worsens before then so itll show up on tests - god I have never wished for it to be worse b4! xxxx

Isn't that just typical CL? It's like when you take your car to the mechanic because of a noise or some problem that is always there....but when you get to the shop, no more noise. Glad your dizzies are better. Doubt it'll stop anything form showing up in the tests though if there's something to be seen.

Just had a bad night again. Agitation all night and wild dreams....think there's another round of herpes stirring. I felt low last night too which is also a warning sign of a herps attack. What a curse.

S xx

Ooooh nooo scott- really hope it isnt herpes again... Get lots of rest.

I, in the meantime, will be doing lots tm in a bid to get this dizzy monster fired up!!!!!!!!

Hugs xxx

Just had a bad night again. Agitation all night and wild dreams....think there's another round of herpes stirring. I felt low last night too which is also a warning sign of a herps attack. What a curse.

S xx

Scotsman9...I know all too well how you feel. When mine hit I start feeling like I'm getting a flu and I'm off balance. I have a hard time sleeping at night and the next day I'm in bad shape. Vertigo, vomiting and all the bad stuff. I just get in bed and ride it out. Today is actually a very good day for me..hopefully one of many to come :) I just started taking St. John's Wort. Someone on this board mentioned I should try that. Anyone else taking it? Hope it helps!

Perhaps it was me? Cant remember. I took it a few years ago and it helped. Have taken it recently but for no more than 10days - not enough really but have given up on it again - waiting