Hi everyone, I feel like I know you all becaue I read every single post, sometimes 2 or 3 times.
I am totally disgusted with this whole damn disease, disorder whatever they call it. The thing is, no doctor knows what to call what I have but it sounds like it could be any inner ear disorder from what I read here. My symptoms are:
1. Off balance(worse some days than others but ALWAYS there)
2. Constant visual symptoms(any time I look in the distance it is shimmering, flickering) last night I went to the bathroom in the dark and it looked like there was a strobe light flashing in my bathroom, even when I closed my eyes)
3. Flushed feeling that will come over me
4. Tingling or extremities and side of face
5. Ears feel muffled at times, could be either one depending on which one wants to act up that particular day!!
6. Itchiness in ear canal, sound of breathing in my ears, like a whooshing with each breath I take at times like a fluid is in there.
7. The typical brain fog feeling, like my mind cant possible take on anything else. Conflicting sounds will drive me nuts, ie the tv on and someone talking at the same time.
8. Bouncing of the tv, feeling like I am bobbing or swaying, reading is impossible with the text jumping all over the place and my brain not being able to understand what I read.
9. Words come out jumbled at times or I cant recall things instantly, hard time remembering common names of things.
10. After riding or driving I feel like I am in motion, more so after longer rides.
11. Stores, forget it, Wal mart is a mysery to me. I feel like I am immediately off kilter the minute I get in there, any fluorescent lighting situation bothers me as well as any flickering lighting, zig zag patterns etc.
ON an on I could go. This will be a year in April, had 2 whiplashes in 2003, do have neck issues. Have had my vision checked, have glare reducing lenses but no prescription as they say my vision is fine(funny, when I cant see good at all!!), I have been to 2 neurologists, a balance center, had all the vestib. tests, blood tests, mri of brain, neck. Been to an endocrinologist(not thyroid or hormones) I am 34, feel awful the majority of the time, work in the health care field. Was an outgoing, fun loving, fly by the seat of your pants kind of person and now I am basically a recluse. Have to plan every little thing I do around a dose of xanax to depress this signal in my ear/brain I guess. It stinks, I'm sick of it. When does the compensation phase start???? The say my ears are fine, 100% hearing, not menieres or vn or labs but maybe MAV, silent migraine type of thing, but CONSTANTLY???? I find this hard to believe really, what do you all think?
I value all of your opinions and think highly of all of you as I know how you feel and how hard it is to cope. I admire anyone who comes through this. Thanks in advance for any input.
I just recently was also diagnosed with MAV...the crummy thing is the "constant" part.
It is interesting to me that you said you had two whiplash injuries. I am also wondering if this started with me because of a whiplash type injury. Although I never was in an accident, I think carrying around my excessively long hair for several years did some serious damage to my neck. It makes grinding noises whenever I turn my head and sometimes just downright *hurts*! (By the way, a haircut did not cure me...it did help somewhat though)
The heck of it is my ENT did an MRI but only did my head. Now I am wishing I had pushed for neck as well because I may be deluding myself, but maybe that would have shown something if there were some neck injury to blame for this.
The brainfog part is terrible. Last night I went to a Valentine Dinner with my husband and everyone was talking and I found myself suddenly forgetting how to speak English...everything came out all befuddled...weird!
Hang in there and hope you feel better.
Thanks Elisabeth, yes you are right about being out and feeling weird. We were in a restaurant recently, it was dimly lit but had a lot of hustle and bustle going on and I felt like I was going to fall out of my chair. I coulnt see right, hear right or understand anything and couldn't even dream of eating anything. We got out of there and walked alittle in the cool air and I felt a little better but my legs were shaking and everything. It stinks. I always have a low level feeling of this but sometimes some situation will provoke it into a full blown episode, theres no telling what will do it but I cant stand constantly worrying about it and I think that is not helping matters because I am constantly on guard and can never truly relax. Even when I go to bed I keep opening my eyes because I have weird flashes going on and I want to "see" if its in my head or really in the room if that makes sense. Thanks for the reply, its nice to talk to people who understand, my husband is at his wits end with me and is like "why cant you get over this" I wish to God I knew!!!
Yes I know it is hard when family members run out of patience (and who can blame them!) I hate that feeling of panic that just takes over your life! The only way I got through those feelings was deep breaths and trusting God to save my life!
I was just curious, has it ever been suggested to you to try migraine meds?
The way I understand it (at the moment) is that you can't really "compensate" from MAV, (unless the ongoing migraine has done damage to your inner ear) and that explains the constant element of it. So you just treat the migraine and in theory you get better.
I haven't got that far yet, still debating whether to bother going to a neurologist. The migraines I get about the same time every month always make my symptoms worse. Fortunately in between times they are fairly tolerable but some days are worse than others.
MAV is a spasming of the arteries at the base of the brain (also called Basilar Migraines). When this happens, blood flow becomes restricted, and you can experience a myriad of symptoms.
One of the classic symptoms of a migraine is visual auras. They can come in the forms of floaters, pin *****s or dots of light or dark, flashes, zig-zags, etc. In my case, among other things, I see little *****s of flashes and tend to think I am seeing bugs on walls where there aren't any.
It's truly difficult to deal with these scary symptoms to begin with, and then add to the fact that it takes a lot of guess work to conclude a diagnosis (you tend to second guess) plus the limitations and anxiety that come with feeling so unreal and so off-balance - well, you become a tensed up, waiting in nervous apprehension, stress ball.
Although things like hormonal fluctuations, poor health, trigger foods (to name a few) can add to MAV symptoms, SO CAN STRESS. So, the more anxious and upset you become about your symptoms, the more noticeable they will be.
Easier said then done (believe me, I know), but it will be in your best interest to find a way to tolerate your symptoms and the moods that come with feeling this way - the more you are able to get a handle on yourself emotionally, the easier it will be to deal with your symptoms pro-actively.
Counseling helped me learn to be more objective about my symptoms, which in turn allowed me to be calmer especially during the more horrid moments. It wasn't easy, and I still have anxiety over the sensations that I now have. But my quality of living is so much better than when I was worrying in fear every day.
Venting is also a great place to let go of worried thoughts and angry feelings. I kept a journal during a really rough patch, and getting those feelings out was very therapeutic - having an outlet, even if it's only writing your thoughts down, is a good way to relieve anxiety.
Are you eating healthy? Stay away from refined sugars and decrease your salt intake.
Go easy on yourself. Anyone who hasn't experienced this firsthand is apt to be less empathetic than say, you would. But your symptoms are real, and you don't have to prove anything to anyone. You look and sound fine, so by now you should be "healed" right? We've all had that reaction from someone, and sadly, most times it's from someone we expect more support from. If your spouse doesn't understand, point him to these boards!
Have you tried an over the counter remedy first? MAV is treated with prescription meds, but some people can get good results by aspirin and antihistimine. I usually will mix 1 or 2 plain 500 mg aspirin with one (to start) teaspoon of Children's Liquid Benedryl or Dimetapp. It's really helps me a lot.
Thanks for all of the useful info. Yeah, I was recommended to try an anti seizure med. I am reluctant to do so, which is funny because I want this to go away so bad, but I am super sensitive to meds, get every adverse reaction known to man with most meds. I take ibuprophen frequently which in turn is doing a job on my stomach, and the xanax which I HATE to use but it is the only thing that gives me a few hours of relief to be able to get anything done.
I have noticed that my depth perception seems off, like when I am ironing I look down and feel so sick, or doing anything that is quick, I have to take everything slow and that upsets me because I used to be able to do everthing with such ease. I imagine I am in a mourning for my old self and would be willing to accept ANY ailment I feel as long as I had a clear cut reason for it and was able to help it if that makes any sense. I have tried elimination diet, no caffeine, msg, etc...I notice that these things can "flare" it up but as I said I always have the underlying feeling, any trigger just seems to bring it to the surface more. Its hard because it seems that all of my systems are haywire. LIke my vision, my head always feels like it is under pressure although I rarely have the full blown migraine but I realize that the actual headache isn't always necessary to have MAV.
Do you, or anyone else here, have the constant "not right" feeling going on? It is like a veil is over my head and I am functioning but something isn't quite right. I am tired from doing little things, like it takes everything out of me to just throw a load of laundry in and run the sweeper and forget any type of formal excercise. I feel awful afterwards and like I am in constant motion, off kilter etc. I hate to keep beating a dead horse and know from reading many books and articles and all of these other peoples accounts of their symptoms that I am really not alone but cant help but forget about all of that and panic and think something is drastically wrong. I guess a certain sense of paranoia comes along with it too. Thanks for letting me bend your ear a little. Today isn't a good day I guess. Too much time on my hands to think about things not to mention its pouring rain and my "time of the month" is due in a few days which all set me off even more than I already am.
Just editing this as I've just seen you and Wowweee have exchanged info, so apologies if I repeat anything, or if you've already answered some questions. And yes, the veil over my head thing - well, I know what you mean, a constant not right feeling. I would describe it as my head having been invaded. A heaviness, or cut offness, or combo of the two.
Fraid you've already heard from me, and I'm sorely lacking any great new info that could cure either of us, but I was v. interested to hear you talk about your neck.
Before I say anything elseI do want to stress that although I am not cured, I was where you are and I am no longer in such a bad place. It depends how I'm doing, but although for the last 3 months I have had a relapse, I am crawling in to a better place, and was much better for a while, this happened around month 18. I had the whooshing in my ear, the muffled ears, the horror in any public place. I am currently still bad in shops BUT my head is much, much clearer. I sat in a restaurant conversing and having a good time the other night. I think it's important to stress this, as I have been unable to tolerate any drug, and this happened without them. Even if it is MAV, and I know you haven't been able to tolerate drugs so far, it could still vastly improve. You're a nurse, so you probably know migraine can work in cycles - we are similiar in age, and it often kicks in, in your mid (ish) thirties. It can go as suddenly as it arrives. Have you tried the obvious dietary changes - cutting cheese, chocolate and caffeine definitely helped me. I don't drink, but I guess red wine would have to go to.
My diagnosis is probable MAV. Since getting this I've also developed a problem with myofascial pain in my head/face and neck. Before the dizziness started I was doing a kamikazee type of yoga called Ashtanga. I had a teacher who I now realised wasn't properly qualified and encouraged me to push on despite complaining of dreadful pain in my shoulders and neck. I have had intermittent neck pain since. I was re looking at a book I have called The Trigger Point Therapy workbook - Clair Davies, which talks about the neck muscles, both front and back, and their link to migraine. As simple as it sounds, I now massage my neck every day, I use an ointment called arnika ointment - some basic herbal stuff for bruises - by no means critical but it helps me oil the area up and really get to the nots. Some people with whiplash also develop jaw problems - tmj, do you clench your teeth? Could you benefit from a nightguard. I know it was only when I took some of the pressure off my teeth, that I really improved. When the nightguard wore down and I started clenching again but didn't realise, it got worse. It is amazing how many people with whiplash injuries develop problems like this, or more straightforward migraine headaches. Has anyone looked at your neck, sugggested stretches to do, or physio? I do think it's imperative to get it looked at if you want to get to the bottom of this. Neck problems can cause the blocked feeling in your ears you describe, as well as the whooshing etc... If you're neck muscles are out of whack it impacts on muscles in the jaw and in the ears, and can cause havoc.
I think I've asked this before, but have you tried sandomigran (pizotifen) My friend who is a nurse who had MAV - her visual symptoms were very similiar to yours - used this and recovered. If, like me, you are sensitive to drugs, you can always try a tiny dose. Cutting the lowest dose in half. Another thing - I have no idea if this applies, but she was on the pill. One thing that complicates her recovery picture is that she also came off the pill at the time she went on the sando - she still doesn't know if that was what cured her, or the drugs - although I definitely know others cured of MAV with pizotifen. My neuro oto suggested going on the pill - although if you are on it - they often suggest coming off it - it can work either way. I won't go on the pill - had it in my teens and didn't agree with me, but if I was on it, I'd definitely get off it knowing what I know.
As a nurse you are probably aware of all this stuff, but I wanted to try and be helpful. Believe me, I'm as desperate as you to be done with this, but it does help me to feel a little nearer to understanding what's wrong with me. I think I may well have sustained vestibular damage, which triggered a myofascial problem that was waiting to happen (and I helped along with yoga) which triggered migraine issues, or the dizziness could all be migraine. BUT, whatever, I know that unfortunately my MPD/neck problems are exacerbating things. I have been doing acupuncture, once a week for 4 weeks. I'm not a big believer in alternative therapy, but I do have time for acupuncture - it cured me of something else once before. Again, if you can't tolerate drugs, it has been shown to be effective in the treatment of migraine
in some people. I have to say, I am feeling a bit better - not sure if it's the acupuncture - the jury is out, but hey, I have nothing to lose.
I guess, in short, I can only tell you what I'd do in your shoes, partly because we have similiar problems and it's all the things I've tried. If you can at all bear it, and haven't already, I'd try sandomigran, or a beta blocker, or amitriptyline. My neuro oto suggested I try tiny doses of things - half the lowest dose (I have a pill cutter) as I am drug sensitive. I've been too chicken to try another drug yet, but I might. I would try and see a physio or an osteo, or a good masseur about your neck. I would check whether you grind or clench your teeth - notorious for exacerbating neck/headache problems, and get a nightguard if you do. I would follow a migraine diet, and I might try acupuncture if you can't tolerate drugs. I think sometimes it helps to simply feel you're doing something.
Other than that I can only say I truly honestly know how you feel. In the first 18 months I was on my knees with it. I'm still often at the end of my tether, even though I'm improved, the length of time I've been ill is now getting me down. If it wasn't for the foggy headedness that kicks in and out, but at the moment, never quite goes, I could bear it better. I just can't bear this symptom, and sometimes wonder whether I am going to spend the rest of my life unable to think as clearly as I used to. Hang in there, you will improve, it just takes a very, very long time.
Oh one other thing - do you work night shifts? Or weird hours? Get enough sleep? My nurse friend was working nights before this kicked in. She thinks that the messed up sleep patterns contributed to getting the condition. She now works days and better hours, having been ill, they worked round her condition when she returned to work. I know that after stress, the number one thing to make me worse is lack of sleep, or messed up sleep - another known migraine trigger.
Sorry this is so long, I've lived with this crap for 2 and a half yrs and wanted to try and pass on any info I've accumulated,
This address only repeat only the issues if they are "inner ear"---which is what I had---for MAV---I did not have it--so---I'm not relating the below comments---to that---at all.
...."3. Flushed feeling that will come over me"...
Of the 11 you listed---in your post--- number 3. is the only one I did not have(if I remember correctly)-----the rest---I had as you described them---none would be unusual for an vestibular injury---.
......"Have to plan every little thing I do around a dose of xanax to depress this signal in my ear/brain"....
......"When does the compensation phase start????".......
........"work in the health care field"......
As you know----from working in the "health care field" compensation---beyond the "acute phase" compensation---where a "cerebral clamp" is activated----usually during first 3 to 5 days----will not take place---until---the vestibular "sensor" injury is healed and/or stabilizes---so that the brain can sort out the vestibular signals and reestablish---the weighting of those inputs so that the brain's equilibrium center---can begin---long term memory---reestablishment---right now---it sounds like---it(brain) is pretty much using "Working Memory" for spacial calculations--i.e., determining your position specially.
......"Have had my vision checked, have glare reducing lenses but no prescription as they say my vision is fine(funny, when I cant see good at all!!), I have been to 2 neurologists, a balance center, had all the vestib. tests, blood tests, mri of brain, neck. Been to an endocrinologist(not thyroid or hormones)".......
Understand---but---did you our anyone of the Medical types---do---any of the maneuvers---for BPPV,i.e., Epley, etc.....Was one of the Medical Types you saw--a Neuro-oto-ologist??
As for the "Cognitive" aspects:
From the Centers of Excellence Balance Center web site(Univ of Penn,John Hopkins, Northwestern, CDC, NIH, etc....)
...."Patients and families, of course, have known for a long time that vestibular disorders bring about cognitive difficulties. Some psychologists and neurologists at the Centers of Excellence during at last five years, crystallizing in the last two or three years, have now begun to recognize and study a number of cognitive disturbances associated with vestibular disorders"......
......."Cognitive disturbances involve a difficulty in basic mental operations such as memory, paying attention or focusing attention on something, and in prolonged concentration. They also involve shifting attention from one subject or idea to another. People with cognitive disturbances have trouble in perceiving accurate spatial relationships between objects, in comprehending or expressing language, and performing calculations, and in a number of other areas.".....
For example----Start with personal life, your home, your shopping, your social interactions, your family responsibilities. The above difficulties wreak havoc with your ability to function in any normal personal setting, from planning a menu to organizing your day's do list, to tracking your children's conversation.
....."There's an astonishing contrast between the ease which most of our patients remember encountering in social situations prior to their illness compared to the difficulty they feel now when they try to deal with more than one person at a time. Situations which seemed hum-drum when they were well now appear impossible.".......
......"Finally psychiatric complications such as depression and anxiety are almost too obvious to mention. After this kind of alteration of your most basic habits of thought, it's hard to conceive of not experiencing anxiety, depression, and disappointment with yourself.
Even if you have a supportive family structure that understands the cognitive problems, you end up inside not getting that sense of satisfying "I'm doing what I should be doing."
......"Even when you're fatigued and vestibular and you know you put in a good day and have done the best you can, that internal lock that says "I know I did this, I can retrieve what I did today, I can look at the big picture, and I had a good day" is not there for most vestibular patients. That alone, even within a loving supportive family and with no financial problems, would create anxiety and depression."........
And the most important question of all
---that those "Centers of Excellence" in this area---working as a team(including L/L's group in the UK, Prof G M Halmagyi group in Australia & Dr. Bertora Equilibrium Pathologies group in Argentina) are trying to answer---
Is: Why!!!!!!!! and How do we fix it!!!!!!
Their collective Hypothesis---to-date is:
....."Our hypothesis is that the reason you have this problem as a vestibular patient is that your brain stem is affected. The brain stem is a stalk connected to the spinal cord. There are nuclei located in the brain stem that attach to your balance system; they are also highly important for keeping your cortex, your thinking areas, alert and aroused and attentive.
Could it be that since you're constantly fighting the mismatch from your visual input and your disordered balance system that a very basic mechanism -- a mechanism that was developed as you learned to sit and crawl and that influenced how you later manipulated objects and then walked and spoke and thought, a mechanism that's taken for granted and built into very fundamental habits -- could it be that something that fundamental is being distorted? That the vestibular and visual disturbance interferes with nuclei functioning within the brain stem and thus interferes with your sequencing of information and impairs and reduces your channeling capacity?
It's an intriguing hypothesis, exceedingly difficult to test. Nevertheless it makes some sense, as anyone with a vestibular disorder can speak to. Basic problems with reading, watching letters transpose, problems with movement and the orienting to the environment -- these are manipulations of the environment that were learned at a very fundamental developmental stage."....
So---I think---that is prob---close enough--to the reason for the cognitive aspects associated with this junk.
...."what do you all think?".....
I think they(medical types) are not sure what you have---again not unusual---unfortunately---it sounds like---it is a Dx of "exclusion" on their part.
For me---when faced with that type of a situation(did not even consider MAV--just did not feel right---to/for me)---I looked at the statics---for the various---medical conditions(Lab, VN, BPPV, etc..)---presented by the symptoms---and for gender and age---history---and decided---the medical condition that fit the data points the closes---BPPV
---turns out---about a year later---Univ of Penn Balance Center---determined that was it---with one additional---data point---compensation was occurring slower then---it should---because of a prior vision problem(s)---got that corrected--and preceded to full 100% compensation---been that way for 1 1/2 years--now.
It sounds like you doubt the MAV---if so----try going the VRT/Epley route---see what happens---take a look at the MEP in the Info Archives
I feel the same way about medications, and would NOT try an anti-seizure medication until other, lesser impacting medications (from a side-effects standpoint) were tried first. I also have a medication sensitivity, so for me, a little goes a long way. My Mother and Brother are also medication sensitive.
I did enjoy being on the Amitriptyline in terms of it alleviating my symptoms 100% after being on it for just three days. I took about 10/12 mg every night at bedtime (breaking a 25 mg pill in half). But I had to stop due to side-effects, and within a few months, my symptoms came back.
It was explained to me that there is no "cure" for MAV - and that includes taking a medication for the symptoms. Meaning, that there are medications to alleviate or dissipate the symptoms, but the condition is still there.
Yes, I have many of the symptoms and sensations that you do, and probably a few more that would sound rather bizarre.
It will be ten years in April (9th) that I've been dealing with this. You would think that I would be desperate enough at this point TO try ANYTHING, but I am quite medication phobic and have to work up to trying something else new that may cause me new or additional side-effects.
I cannot tolerate massages very well due to the rubbing motion puts me off-kilter, and it's difficult for me to lie or sit for a very long time (being in motion on some level is better for me). But I do enjoy neck and shoulder rubs because I am usually always tight or sore there (small wonder why!). I also remind myself to loosen up and drop my shoulders because I tend to "live tight" - probably a reaction out of fear to not envoke motion that will set me off and habit from dealing with this for so long.
I have found that 'exercise' (moving my muscles) make me feel better - and that can even mean something like squeezing my thigh muscles together when I'm sitting. I have discovered a love of gardening, and despite having a time of it while trying to look down to weed, I found it very relaxing and at the same time, energetic for me.
Sometimes it seems that NOTHING in particular brings my symptoms on, and sometimes I am very aware of a trigger: I do attribute an increase in symptoms due to stress or illness. I can also counter my symptoms by "practicing calm", which is doing or thinking about something when I feel my symptoms begin to get worse that makes me feel safe and secure. This can also be in the form of positive self-talk, journaling, or self-reassurance that I am okay. It sounds simple, but has taken me some practice to be able to reassure myself that I am okay despite symptoms, and that "symptoms are distressing but not dangerous".
I've had to learn to trust in myself all over again because my body is sometimes foreign to me with all the bizarre feelings and sensations, so I've had to relearn myself with this condition and know that I am okay despite how I'm feeling. No small task.
It's difficult to work with a woozy head, and the panic and limitations and depression that come with that! WE ARE STRONG.
wow, you have every single symptom that I have!!!
I haven't got a diagnosis yet, but MAV seems to fit. But I have a VERY hard time believing that it would have a migraine for 1 and a half years!!! Day in and day out not once in that one and a half years feeling normal. In my opinion something had to of blown out. A fuse if you will, in either my brain or my inner ear blew. I just can't accept that MAV would happen so suddenly and you would never feel the same again.....
I felt the same way about a diagnosis of MAV. But I guess that when people think of "migraine", they think along the lines of episodic symptoms rather than as an ongoing (or continual) problem. MAV is a variant type of migraine headache, so it differs characteristically in terms of the 'usual' or 'typical' migraine symptoms one thinks about. Meaning, that MAV is a variation of a migraine headache - which means it is different from how a classic migraine affects symptoms. I also thought migraines were just the kind of headache a person gets that results in the need to lie in a dark room and vomit until it passed.
I had a difficult time believing anything I was told for a long time. I kept second-guessing diagnoses and pushing to find "something else". I still don't feel that I fully (100%) accept a diagnosis of MAV, even though I have many symptoms and triggers that would confirm that diagnosis. Plus, when I took one of the "standard" medications for MAV, my symptoms disappeared within three days - another indicator of this diagnosis for me.
Do you have a history of headaches?
Do you have a history of migraines in your family?
Does your head symptoms increase around your menstrual cycle or change in weather?
Are you or have you been a highly stressed or anxious person, generally speaking?
Are you or have you been a worry-wart?
Do certain foods or thoughts increase your head symptoms?
Do you have a history of headaches?
Do you have a history of migraines in your family?
Does your head symptoms increase around your menstrual cycle or change in weather?
Are you or have you been a highly stressed or anxious person, generally speaking?
Are you or have you been a worry-wart?
Do certain foods or thoughts increase your head symptoms?
Actually, I do get migraines. I am 36 years old and had my first migraine when I was 18. It was the worst I ever had! I went BLIND in one eye and partially blind in the other. Then the headache hit. That one was the worst. I was on the pill at that time. I went off the pill when I was 20. I still got migraines in my early 20's mainly with PMS. In my late 20's and early 30's I rarely got migraines. and the headaches were never the worst of it. It was always the visual symptoms and the nausea and just general feeling of wanting to be alone with no lights on or sound around me. I never felt PAIN with my migraines. They always seemed to be related to my period, wheither right before my period or after.
One thing I should mention is, I did have 3 dizzy- vertigo spells before this whole nightmere began. I woke up with them, and they passed in about an hour and I was right back to normal. Those happened about once every 6 months starting in 1999. In 2003 I suddenly became VERY dizzy (but not vertigo...) and NEVER got over it to this day. I must admit it has improved. In the beginning I couldn't watch TV at all, couldn't lay down and sleep, couldn't do ANYTHING! I am a lot better now...that is what confused me about a MAV diagnosis, why would it hit so hard, and then slowly over the course of 2 years improve? It is all very strange.....
Wow!! All of you guys are so great and knowlegable regarding these subjects. To answer some of the questions posed to me: It was the neurootologist who diagnosed the MAV, I do feel that my vision is what is triggering this whole thing for me but noone finds anything diagnostically "wrong" with my vision perse. An example of this is today at work I could feel my vision drifting in and out and Wow was I messed up. It felt like I was falling or my head was being pushed etc. I do have a "lazy eye" as they call it and over the years it is worse and worse and I know this is contributing majorly to all of this. I can feel my eye muscles working constantly to put me "upright" I should say. Yes, my neck has been checked, I am currently visiting a chiropractor 3 times a week since Nov. It has helped ease up some of the tension but not really alleviated any of the symptoms so to speak. I also was diagnosed with fibro/mps. I have the tender points all over my neck and upper back. I have the Clair Davies book and the Travell and Simmons one also, I work on the trigger points alot hoping it will alleviate some of the tension and my eyes/neck wont have to work so hard to keep me in line. They couldn't see any nerve impingement etc on my mri but I feel that I have a nerve being impinged somewhere "up there" as I have a buggy feeling at the top of my neck/shoulders/ back of head sometimes. All of this would be tolerable to me if it weren't for the constant 24/7 off kilter disequillibrium. Its odd but I cant even pinpoint any particular thing that sets it off, glares can do it, markets and stores for sure but sometimes I am just laying there and feel like something is pushing me suddenly. I am not on the pill so thats not an issue but for sure feel worse like this week leading up to my period. I am so reassured regarding one of you guys saying that I can feel better eventually, this is a year now and I guess you all have had it much longer. I am not psychotic,(well maybe a little,lol). The neurooto did recommend vrt with a gaze stabilization portion to it and I am going to schedule that asap. I cant remember all of the other interesting points you guys brought up but am so grateful for it. Oh yeah, the pitizophen sp? I am is USA so I dont think that is available but have read many people from the UK claiming it really has helped them. If I wasn't so scared of meds I might try to get some of it somehow. Thanks everyone, I have to go wash my hair, as stupid as that sounds it is a major event that leaves me reeling for several hours afterwards.
Again, it is possible that you have an inner ear condition along with MAV, or MAV has triggered an inner ear problem. Sometimes vertiginous symptoms are difficult to diagnose, and at some point it becomes more a point of treating the symptoms rather than finding the cause.
Have you ever thought of making an appointment with a neurologist JUST to talk to him/her about all of your questions regarding MAV? Maybe with some clinical education, it would be easier for you to accept an MAV diagnosis and understand how MAV works and effects symptoms. Just a thought.
It’s great that you feel you are improving. You are probably feeling better because either you are learning to compensate in other ways and/or your body is slowly recovering from the problem. Recovery and compensation vary from person to person, and depends on many factors. It’s hard not to be impatient, I know.
Just had to smile at your comment about washing your hair. Oh, the adjustments I have had to make because of my symptoms – I have learned I am quite creative when it came time to think of new ways to shower, wash my hair, or even shave my legs! But I always got the job done – even though some days it was more of a chore than anything else! Thank goodness the “flat, straight hair look” is in, because there is no way any more that I can gingerly flip my head upside down to blow dry! I go to a hair salonist for coloring (I love changing my hair color) and you should see the set-up we have going in order to rinse the color out – because I cannot recline, tip or tilt back. What a process.
Never give up! It will get better, but as I mentioned above, ‘recovery and compensation vary from person to person, and depends on many factors. It’s hard not to be impatient, I know’.
You’re in the States – have you tried the medication called Amitriptyline? You are correct, the Pito is not available here.
Hope your hair turned out well.
Last edited by Wowwwweeee; 02-16-2005 at 06:22 AM.
I also have had "lazy eye" since I was a child. I never noticed because I relied on my right eye so much while the left progressively got worse and is practically blind. Depth perception has always been off a bit and lately with this whatever it is, my vision has gone totally wacky. I need to go see the guy about getting new glasses but I was kind of putting it off thinking, let me adjust to being dizzy first, then worry about adjusting to new lenses.
I wonder if this plays into it all in the first place (the migraine issue) because with me it is all on the same side.
It's really bad that everyday tasks become huge hurdles and still at the end of the day you don't feel like you got squat done...OH Well...keep on going, right?