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    Old 04-26-2007, 10:34 AM   #1
    charlotte67
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    Veteran Member updates...Subs/joy/gloria/scots..anyone

    I was wondering if we could do updates on how we are all doing? I see these on the healthboards from time to time...and they really help me. Are you guys game?

    I'll start:

    Charlotte
    Diagnosed with VN Sept 06

    Started vrt same time with PT

    Initial symptoms: bouncing vision, nausea, head pressure, head fog, terrible in stores, headaches, visual crap, imbalance, rocking, woozy, really tired, couldn't drive, couldn't concentrate, terrible in crowds, terrible in busy places.

    Have been improving...what I am still dealing with: Visual tracking issues, head pressure, ears a bit off...sometimes full (not as bad though), woozy head.

    My PT says I should be at 100% in the next few months.

    Not taking any medication, no real changes in diet. Working the VRTs, walking, playing with our baby...

    This week feeling really off, I believe decompensation from 10 days of little sleep due to the baby and travel.

    I would love to hear some of the veterans and a recap of their stories as well as us newbies...thanks everyone.

     
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    Old 04-26-2007, 12:12 PM   #2
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Not a veteran but a newbie

    Lauren

    Started 7 weeks 3 days ago

    No diagnosis as of yet

    Symptoms:
    Vertigo
    unbalance
    nausea
    vomiting
    diahrhea
    depression
    severe anxiety
    brain fog
    trouble concentrating
    trouble with eye focus/jumpiness

    Current Meds:
    Meclizine
    Valium

    Seen ER docs, ENT, GP, and go to see neurologist on May 11th
    Started VRT's a few days ago

    Probably 50% right now anxiety kicking my butt plus worrying about decomp due to meclizine

     
    Old 04-26-2007, 03:52 PM   #3
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Hi Charlotte,

    VN or labyrinthitis hit on Aug 30, 2003 after three days lying flat on my back with intense back pain and after dumping tons of pain killer into my system (not sure if it was causative or coincidence). Two weeks before the main event I had two nights where I felt drunk lying down in bed following a series of stretches for a stiff neck. Luckily I was diagnosed correctly immediately and also found this board within 2 weeks of it all starting.

    Initial symptoms: fever, burning ears, zero energy (couldn't walk up a flight of stairs for 3 weeks), surrealism, head fog, dysequilibrium which turned into full-on dizziness as though I had stepped off a merry-go-round, endless anxiety and panic attacks, agoraphobia, neck pain, tinnitus.

    Began an SSRI at month 4 and all symptoms were virtually gone 5 months later. Maintained about 95% for very long stretches with occasional relapses precipitated by a new LCD screen once and stress other times. Relapses were strong and went within 5-6 weeks with SSRI increase. Last October reached what I would call 100% while travelling Western Australia.

    Today: It's obvious that migraine (MAV) picked up the ball where VN dropped it - probably way back within the first 6 months. I now realise I've been a migraine sufferer since 1997 showing it's face in what they call "tension headache" and chronic neck pain before VN arrived. Stopped the SSRI 5 weeks ago now and it's been a battle ever since with headaches, neck pain, anxiety and now dysequilibrium again. Thinking seriously of starting low dose amitriptyline today (5 mg). Stress over a relationship ending really brought it all on again and it's proving to be more than I can handle for the moment. I believe the SSRI worked well because it 1) stopped the anxiety which allowed for compensation and 2) raised my threshold for migraine.

    Best....Scott

     
    Old 04-26-2007, 07:01 PM   #4
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Stargrave

    Started with a strtogn positional vertigo attack one morning on Nov. 2004, cuhc like BPPV, no nausea not extra symptoms just the strongest bout of spinning vertigo I've ever had in my life. Needed to take an antivertigo drug to get to the doctor(ENT), they tried Dix-Hallpike, negative, blamed the drug, gave me the Cswthorne excercises) VRT, and sent me home.

    4-5 months with quick recovery, almost a full year without any strong symptoms till June 24th(a day before my wedding), no drugs this time, again Hallpike negative, BPPv Dx Changed to VN, once again exercises and that's it.

    Pretty normal rest of the year till January 2006, wher I began experienciang all of the other vestibular symptoms for the first time, unsteadiness, fog, visual stuff, the whole works. Came to a Neurotologyst wich named my dizziness as an "old one" pretty normal and well compensated in allt est, with only some right ear dysfunction detected on the caloric VNG.

    Same old exercises again, and more than a year after that appointment(February 06), I'm still on the dizzy ride.

    Some ear and nose coughing because of sore sinus complicated my symptoms, ibuprofen, loratadin and pseudoefedrine, helped, but it's an up an down situation.

    I have a history on Migraine wich is my main suspect for this stuff, but strangely enough my neurotologyst didn't gave it much attention.

    Right now, I'm in a middle of sme food poisoning, wich curiously enough is giving me so much trouble that I almost forgot my dizziness.

    Vestibular related, I'm still with ups and downs, from high 90's to low 80's, chronic allergies sufferer, as I mentioned, wich complicate my life too, on my 90's I fell pretty much normal, but haven't reached that 100 mark again in a while, where everything feels clear like water.

     
    Old 04-30-2007, 07:23 AM   #5
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Just a bump...

    Hope Joy, Gloria, lizzy...subs, treefarmer...might add on...or anyone that isn't really new.

    We all follow your updates! Thanks guys.

     
    Old 04-30-2007, 08:38 AM   #6
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    Talking Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Hi

    Woke up in/around 18 Jul 02---spinning--like crazy---could not stand up---crawled to---bath room---which I seemed to live in for next three days/nights.

    Saw PCM---she prescribed a steroid & ordered an MRI---and scheduled with ENT---took---ENG---right lab---dead---ENT said Lab---scheduled---a visit with Neurologist---he said MRI was unremarkable---said VN/wBPPV--- + ----vision problem---superimposed on---balance problems----sked for VRT's---not much help---there.....

    Decided---to do my own---VRT's---so walked day/night 7/365---plus VRT's---kept---getting hung up---about 11/12 month---get to 75/80% compensation---& slip back to 55/60---then back--to 70/80%...etc....

    Found out about Univ of Penn Balance Center---sked visit---within---40min of testing---Doc's(NEUROTOLOGIST's) had the problem---failure to fully compensate---do to submarine vision injury(brain had previously compensated for this--abt---20 years prior to Lab/VN/BPPV event)also about that time Scott found the MEP data/video---so added that to VRT's---occasionally---more of a double check---to make sure any rocks were out/desovled.....

    Gave me some specific vision VRTs to do---along with what I was already doing---within 13/14/15 months---reached 100%---been there---ever since---be five years in Jul 07


     
    Old 04-30-2007, 09:33 AM   #7
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Became ill with a cold virus December 3, 2004 - turned into a possible sinus infection - took antibiotic- cold began to clear up but started feeling sick, achy, tired - Entering 10th day of antibiotic - broke out in a rash on my face and ears which turned to blistering and burns - ended up with Steven Johnson Syndrome (severe allergic reaction to an antibiotic) - put on prednisone to conteract the reaction for 10 tens - went to sleep and woke up with a severe ear infection - buldging ear drum was surgically drained (no tubes) - still feel ill - week later - ear drum healed and closed up/infection gone - lots of drainage and horrible sore throat - cleared up and week later woke up to severe skull cracking in two pain and pressure throughout my whole head and ears 24/7, full ears, vomiting, brainfog, nausea - developed into dizziness (no spinning) - shaky feeling in my head - vision problems - pressure behind my nose - no balance issues - severe tinnitus - over all ill feeling - neck pain- crackling noise in my ears - crackling in the back of my head - a clicking/tapping noise that went from one ear to the other through the middle of my brain - and many other symptoms.

    I never had periods of compensation then decomp. My symptoms where/are 24/7. Little by little each symptom has gotten better to the point that some even went away.

    Saw 9 different doctors including neurologist and neurotogist. Had MRI, CT Scan of Brain and neck, CT Scan to check for Cranial Desidence, blood work, EEOC, Rotary Chair test 2 times, Neuo-opthamologist tests for vision problems, hearing tests, pressure tests, etc.

    Tests either negative or pointed to my Central System.

    Finally, with my research and the help of others on this board, I found a great neurologist and finally have an answer (something I suspected all along, but couldn't put my finger on it) and a plan for recovery after 2 1/2 years. (Story can be found on my posts.)

    Today.......Substantial improvement over the last 2 months - mild headaches, mild pressure or heavy headedness, mild buzzing feeling in my head, still some vision problems but not as bad as prior years, mild problems in stores but much improved and my demon symptom.....TINNITUS. Still some mild anxiety/depression but doesn't totally control my life anymore. I am very fatigued, but I don't contribute it too much to my injury but rather lack of exercise (hard exercise) and stress from the symptoms. I feel the better I feel, the more I'll do and the less fatigue I will have in the end.

    Recovery: Mostly time has played the biggest part in getting to where I am today. I eat healthy and take B, Magnesium and Omega supplements. I built my immune system up the first year with help from a holistic doctor with a strict diet and taking a probiotic and using some natural methods for helping when I caught viruses along the way. The migraine diet helped me greatly this year as it knocked out some CNS stimulants that where aggrevating my nervous system that was damaged. I was on a low doseage of a vestibular suppressant 8 - 9 months into the illness to help with my headaches and slow my vestibular system down. It may have helped slightly with the anxiety, but never with my symptoms and actually I now know it was only causing my symptoms to be intensified since my problem was brain trauma. It was a hellish ride coming off the klonopin. I remained as active as possible with every day routines and a small child. My husband forced me out when I felt at my worst. Now I understand why he did this and was a key player in my mental health. I tried accupuncture once, but it was horrible experience. I found an occasional swedish massage did wonders for my neck and head pain as well as the stress. I did VOR exercises given to me by my neurotogist but don't believe they helped me at all and they probably didn't since my problem isn't really inner ear just as MAVers don't find they help them either. I did lots of walking and followed some of Subs recommendations like the walking at night (except) I walked around the park or tracks with my eyes closed.

    I think the key to recovery is staying active, resting when needed, eating healthy, avoiding certain food triggers, and most of all, helping your mental health with what ever it takes, breathing exercises, gentle yoga, meditation, psycho therapy, etc. My most recent doctor, Neurologist, recommended a cd from the Michigan Head-Pain and Neurological Institute that is fabulous. For the past month, I have found that walking for 30 minutes followed by just 10 -20 minutes of the pain management and stress reduction exercises has greatly improved my well-being over the last few weeks. I highly recommend purchasing the tape as it is one of the best I've ever listened to. The center is the first face, neck and head pain management center in the US.

    I try and not dwell on the past anymore as part of my recovery is going forward. I feel part of my illness was the trauma of what had/has occured too. Things do get better with time, but seems to take a lot of time. Everyone is different in terms of what damaged was caused even though the symptoms experienced may be similar. I don't take things for granted and I enjoy the moments that I feel my best with my little boy and husband. I learned alot about myself as well as others and feel that this horrible thing (I honestly never thought I'd say this) has actually done some good for me that I am beginning to realize now. I enjoy the life I had and look even more forward to the life I will eventually have again. What has beaten me down has only made me stronger. I no longer think about the what if's and focus now on the when's. I think that has been the key over the last few months of much improvement.

    Last edited by gloria2936; 04-30-2007 at 09:46 AM.

     
    Old 04-30-2007, 09:38 AM   #8
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Started May 2005 Three weeks after some viral sore throat etc.... Started feeling Strange, rthen settled in after 4 days as:

    Pressure
    Light Headedness
    Shaky Throbbing head
    head aches
    Fatigue
    heavy eyes
    anxiety
    tinnitus
    really low hearing loss -- Couldnt tell

    Maintained the same with minor improvements and some better days here and there until Jan of 2006 where I started having better days. This continued, but since then been plagued with colds and other sillyillnesses which always seem to set me back.

    Currently Just getting over a blip which lasted 3 weeks.....

    Tummy

     
    Old 04-30-2007, 12:01 PM   #9
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Started January 2004 with Blurred Vision, Nausea, Dizziness or off feeling, bad anxiety, head pressure. I had this briefly for a few months in June of 2003 and this went away on its own with no treatment. Then from January 2004 till August 2005 Chronic 24/7 symptoms with no break. I started taking Zoloft in August 2005 which got me to 80%. I went to a Neuro-Otologist from September 2005 thru January 2007 who took a series of test and sent me for VRT which did not improve me much but he sent me to a Neurologist and he diagnosed me with MAV. Been on Verapamil since January 2006 and for the last year I have been close to 100% if not 100%. I have some residual symptoms or mild symptoms once in a while. Only side effect is urinary retention or I pee a couple more times a day... In the proccess of coming off Zoloft very Slow.. Started at 50 mg's down to 12.5 after reducing 12.5 every month.. Some withdrawl but not to bad. Achy tired feeling every s often...

    I saw a million doctors in the begining and had every test known to man... MRI's MRA's blood, test , Infectious disease doctors all kinfs of specialist all positive. The Neuro-Otologist found Vestibular Dysfunction which had leaned towards Central but we tried VRT without medication 1st. .. I also take 1000 mg's a day of magnesium Omega 3 suppliments and I am know very active. I run 20 miles a week and lost like 35 pounds after gaining a lot of wait from the Zoloft . I am almost back to where I started. I eat helathy and I am very positive about everything. The anxiety aspect and looking on the internet drove me up a wall. I thought I had everything. Zoloft and therapy and this board helped me on the right track and the doctor who diagnosed MAV has gotten me to 100% more or less for the last year...

    Stay active and and positive and this to shall pass. Its takes a lot of patience, persiistence, hard work , and postive thinking but you will get better or at least recover to a point where your life is pretty normal

     
    Old 04-30-2007, 12:06 PM   #10
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    I have never posted but I have been reading these posts looking for answers since MAY of 2004 when this crap first started. I woke up lightheaded on May 22, 2004.

    My symptoms progressed to:
    Lightheaded (never spinning)
    Headaches (became daily in the summer of 2006)
    Pressure
    Tinnitus
    Visual problems
    Sensitive to Light, Sounds and occasionally my footsteps
    Symptoms increase in stores and malls
    Driving also caused problems

    Doctors seen - ENT, Neurotologist, (2) Neurologists

    Alternative - Acupuncture, Natureopath, Chiropractor and Massage

    I have had all the tests. No diagnosis.

    Exersise - Run 4 x week (6 miles per run), Golf (tough while dizzy), Yardwork

    Through a friend of a friend I found a clinic in Ann Arbor, MI that specializes in migraine treatment (Michigan Head Pain and Neuroligical Institute). I thought that if I treated the headaches that it might help the lightheadedness.

    I went to my appointment in November 2006. I am from Charlotte, NC so they checked my into the hospital to begin treatment.(due to the distance between NC and Michigan)

    I was in the hospital for one week. The treatment consisted of IV's of Benedryl and Magnesium and oral doses of Lyrica, Klonopin & CoQ10. I left with the headaches gone but still had the lightheadness and other symptoms.

    I stopped the Klonopin in December and have remained on the Lyrica, CoQ and Magnesium. I plan to wean of off the Lyrica in the next few months.

    Sometime in mid February the lightheadness improved to the point that I am between 98% and 99.9% with an occasional day that I'm a little more off. A slight headache once in a while which doesn't last.

    I never was given a diagnosis. All I know is that I'm feeling close to normal again. I had forgotten what it was like. I go out at night without problems, I play golf without getting dizzy or a headache. No problems driving. Still a little odd feeling in stores, but greatly improved.

    Its been a tough road but always knew that I would get better. It took me 3 years, but its finally here.

    Good luck to all of you.

    Will

     
    Old 04-30-2007, 12:14 PM   #11
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    I find it funny almost everyone knows the exact date they got sick. Funny how life altering this illness is....

     
    Old 04-30-2007, 03:39 PM   #12
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Gloria...so glad to hear you are feeling better over the last 2 months. How old is your boy? My daughter is now 6 1/2 months.

     
    Old 05-01-2007, 06:58 AM   #13
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Hi Charolette,

    Thank you. It seems that at every year mark, I notice the biggest change in improvement and over the last 2 months I seem to be able to do much more.

    My son is 6 now, but had only been 4 for 1 one month when this started so he was still quite young. Unfortuneatly, I think he grew up just a little too fast having a sick mom, but it has made him such a mature and passanate little boy. I love him to death and he has been my rock throughout all this. I've been having a hard time dealing with some of these life alternating changes from this dizzy mess as I really wanted to have another child and I am beginning to realize that that will not be possible because of my age and the fact that I don't want to rock the boat in my head in anyway to provoke this monster to wake back up at full force again.

    Enjoy your daughter, they grow up so fast. It sounds like you are moving very quickly to recovery from what I've read from your posts. Most people that I have gotten to know on this board has taken them a lot longer to get to where you're at so keep up the good work and stay positive.

    Take care,
    Gloria

     
    Old 05-01-2007, 09:31 AM   #14
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    Gloria...thanks so much for the kind words. You are a brave woman. I have read much of what you have posted. I know what you mean about a second child. We discuss it...but I do get frightened about it. I have felt this way ever since 8 months pregnant...blah.

    You are a darling...don't you give up....

     
    Old 05-02-2007, 07:57 AM   #15
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    Re: Veteran Member updates...Subs/joy/gloria/scots..anyone

    For me it started 6 or so years ago. I was in the shower and suddenly the room started spinning. It lasted maybe 20 seconds, and then went away. Freaked me out though. Then maybe an hour later it happened again. After that spinning attack, I was left with a feeling as if I was moving (swaying and just a general feeling of unsteadiness). I went to the doctor and she told me it was labyrinthitis and gave me some dramamine. Told me I should be better in 6 weeks. I had a couple more spinning attacks (slow room spinning, without any nauseau or vomiting that lasted maybe 30 seconds), then for the next 6 months I was left with a subjective feeling of swaying and spinning. It was horrible, I was convinced it wouldn't go away. i had not found these boards, and felt very alone. But it finally got better and went away. I was fine for a couple years, and just figured this was some nightmare that I could forget for good. Then years later it came back. I had gotten a bad case of bronchitis and just as I was feeling better it all came back. the same exact way, starting with a spinning attack, left with swaying, had some more spinning over the next 2 weeks, and then the swaying sticks around for 7 months or so. But this time even though the constant swaying left around the same time, it took much longer to have consistent periods of feeling good. it would come and go a lot more often then before. This time around I saw an ear doctor who sent me for an ENG and got my results of 35% less function in my right ear. I was never formally diagnosed with anything. One doctor says labs, another says my spinning isn't bad enough for labs and says it's BPPV. I have no idea.

    So now, I'm doing much better. No swaying feelings, in a little while. I do have it come back here and there, I'm not as quick to firmly compensate as before. not sure why, but still hoping this will leave for good again. I'm grateful for how I do feel. I feel normal most of the time, can do the same things I have always done, so for that I am so happy. I'll be fine with the way things are, and am so grateful for feeling good most of the time. I have developed some mild tinnitus a year ago. Came on out of nowhere, and I freaked out. I hated having any noise in my head regarldess of how mild it was. It has calmed down and now comes and goes. I barely notice it when it is around. I'm not sure if this is due to my inner ear problems or not. I don't listen to loud music, so I guess it's related to my ear problems.

    Anyway, thats my story. Hope everyone is feeling better. Just wanted to also add that these boards have given me so much support and helped me realize I am not alone in this problem. Makes dealing with it so much easier. I love you guys!
    Joy

    Last edited by joy78; 05-02-2007 at 08:02 AM.

     
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