Yes, yes, yes. Any change could make make MAV. MAV causes increased extreme sensitivity which can easily be made worse by change however, as already stated, increased symptoms can occur spontaneously too. They can just āhappenā.
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So Iām guessing
A new illness
Antibiotics
Hospital stay
New supplements
New dose Zoloft
Starting job again
Will cause relapse? And please tel me this will end? I just need validation right now because I feel itās getting worse and Iām scared to get worse symptoms
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You got it. In fact virtually any change or irritation can cause breakthrough symptoms/relapse.
It will settle down gradually over a period of time. The medication will take time to regain control I suspect.
It better cause over a month Iām feeling worse. I have no idea why?
Iām confused if I should do vrt during a relapse
If it provokes migraines donāt bother imho. You could tone down the exercises to the simpler ones. Or just go for a walk in nature.
Hi Luna, I feel your pain. Iāve suffered with VM for 4-5 years now. I went on Nortriptylline at first and had immediate relief with 25mg. I was basically symptom free for about a year and decided to come off the med. I did well for several months but I ended up needing an upper endoscopy for an unrelated reason. I donāt know if it was the anesthetics I received with the procedure or what, but a few days after the procedure I was thrown right back into dizziness hell. I went back on the Nortriptylline and was pretty bummed when it didnāt work at first. I slowly increased the dose and my symptoms eventually went away after several months when I got up to 100mg. Again, I was fine for about another year when my symptoms came roaring back after I stupidly decided to drink a bunch of coffee to try and stay awake at work. This was 4-5 months ago and Iām currently up to the max dose of 150mg of Nortriptylline and Iād say my symptoms are back to about 75% of normal but nowhere close to the symptom free days I had before. Iāve started taking several supplements and am trying to adhere closely to the migraine diet. Iām considering seeing my doctor again to see if I should start another med or what. Itās very discouraging.
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Youāre at 75% so thatās almost there. Youāll get there again if you got there before. Iām trying to believe that again for myself. I think it just takes lots of times and i heard good advice to go back on what helped you in the beginning, so since youāre capped at that med, you might need another or maybe VRT since youāre at 75%.
What supplements did you start? Those take like 3 months to work too.
Iām on B2, Magnesium, CoQ10, B12, butterburr and feverfew. Iāve tried VRT and it hasnāt worked much for me. Feels like it might make things worse honestly. I know what you mean about the higher doses of medications. I definitely have started to experience some side effects at the higher dose that I didnāt have at the lower doses. Sometimes itās hard to tell if itās the side effect of the medication making my head feel foggy and āmedicatedā or if itās the migraines.
Itās probably how long youāve been on the medications too. Itās so confusing sometimes!
Hi guys, Iām having a really hard time right now and would like some advice or support.
Iāve been through this before starting around 2010 and had all the wild, chronic symptoms. I was put on Zoloft and topamax and did some VRT and literally got my life back.
However, if anyone read above, I got a random illness out of nowhere and was on some antibiotics. Also, I was in the hospital for about 4 days.
Prior to this I was having about 95% days besides a few times during my period and up until June 19th 2020 I threw up and since then I started feeling just off balance sometimes and pressure in the head. Around this month I started to having panic attacks again, especially while I used the bathroom and had stomach aches. About a month later I got sick with colitis and landed in the hospital. That morning I remember feeling dizzy. Iām not sure if it was because I was anxious I was going to the ER or because an illness was already in my body.
When I was in the hospital, the dizziness just got worse while I took more drugs. By the time I got out, like clockwork I could hardly walk. This was extremely traumatic for me.
Itās been 2 months since Ive been in the hospital and overall Iāve improved and am not bed ridden anymore, but my dizziness is still chronic and I have a fear of getting dizzier or more symptoms.
I started seeing a therapist again and we both believe Iām dissociating because of the traumatic experience from the hospital and my reappearance of symptoms. This is so hard as you all know. Things donāt make me happy anymore like they used to and I have no motivation to want to do dizzy things, if that makes sense. When I got home from the hospital, I did try to walk and even go to stores. But now, I have no motivation to do that. I tried to go to the store the other day and it was horrible.
Iām currently going to work again (Iām a teacher and we are teaching virtually so itās a lot of computer all day) and I recently started up my Zoloft again from 125 mg to 150 mg and Iām starting week 4.
Just before I was looking down putting stuff away and felt the floor move under me, or maybe felt myself move. Only for an instant but enough for me to go OMG. This is probably normal but it scared me and I am always on high alert of my symptoms.
Can anyone share what I should do next? I am planning to call my Dr again to tell her the update. I am really wondering if my attitude when I got home from the hospital made a difference because the only thing I changed was my Zoloft, started magnesium, started work, started therapy.
Any help is appreciated as I am so confused and scared?
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Avoid at all costs staying in bed. This is totally counter productive. Also be careful you donāt go too high on meds because that may inhibit compensation even if the drugs are not officially described as vestibular suppressants.
Thereās little a hospital can do for you I suspect so try and stay away unless related to another condition.
Walk in nature. If particularly anxious get out the house immediately. Go for a walk in a green space. Preferably for at least an hour. This may be uncomfortable at first but you should find after half an hour your symptoms are much more bearable. Do this every time. It will do wonders for your mental health and aid compensation. Compensation in turn will reduce symptoms and migraines.
Keep your drug regime under review. If you are not seeing any improvements after a year then you need to consider a different regime imho.
Itās good you are having therapy. I trust they understand vestibular patients? I found therapy very very useful indeed and it helped me keep things in perspective. Minimising anxiety is critical for your recovery and your quality of life whilst you recover.
Itās good you are working. Distraction is really important as well as having something meaningful to do with your time.
Put vertigo into perspective. It happens. Itās going to increase symptoms for a while, but you will get through it every time. One day, you may not have to deal with it anymore. For the time being just take it on the chin. Itās not going to hurt you.
Hang in there. You will get through this! 
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At work Iām sitting a lot lately using a computer but I try to walk around my room on my breaks, but my walking and balance has been not good. Even just standing is hard sometimes. When I come home, I only feel āsafeā staying in my chair in my bedroom.
I just got home and while Iām at work, I still feel dizzy and it gets worse through out the day so once I get home I donāt even want to do any kind of walking or movement so Iām not sure what to do. In the past 2 months my movement has plummeted. I used to do so much movement and walk everyday. I want to compensate but I donāt know where to start. Iām praying that this residual dizziness and sensations is leftover compensation I need to do, but a big thing that is playing into it right now is fear of the symptoms and low motivation.
When I got out of the hospital, I could hardly walk thats how bad my dizziness got, but my doctor told me to try to move around so my brain could adapt. I was like āI need to heal so Iām going to walk around!ā And my attitude was really positive. I was actually going for walks and even some stores. But when the dizziness improved a little, but lingered, I was depressed now and just started staying inside more. Now I hardly go out unless it is to work.
And I didnāt know that about the drugs. I know Iām capped at my topamax my Dr said but not the Zoloft I donāt think.
I just tried to sit outside when I got home from work because even that is an anxiety trigger for me, but for some reason my symptoms just got worse again so Iām not sure what it is.
Iāve been on these drugs for over 5 years and they worked great. This only happened after this random colitis I got and bad antibiotics that I think affected my CNS.
Iām trying to think this is just part of healing, but Iām so confused why itās not happening faster or linear. Even though Iāve been through this before and it took a solid 3 years to get to normal days. I just never relapsed before and it feels like forever.
I agree, ischemic colitis is like one time from what I understand and itās not like ulcerative
Yes feom what I understand
And if my VM was triggered after my colitis, then am I having a constant migraine or PPpd symptoms?
Iām wondering
Hey guys,
So i want to give an update to anyone that cares lol
I went to my Nuero -otologist today for a follow up after 3 months of this chronic dizziness after my relapse
My plan is to do klonopin for a month at .25mg a twice a day for a month and then wean off to see if that helps it
If it doesnāt, then they will do something like gabapentin or amitriptyline. They mentioned gabapentin is good because you can vary you doses throughout the day? I had no idea about this or what it means
She said not to start VRT because Iām so chronic right now and it will just make things worse
She said the brain takes so long to heal and its not just a quick fix, but for some reason I didnāt except it to take THIS long
I I keep thinking it has something to do with the antiobiotic I took at the hospital, ciprofloxaxin that affected my vestibular nerve
She said this could have been the case but its usually with the other kinds, the āmyacinsā
She said if it did ruin my vestibular nerve, I wouldnāt be having some improvement. Ie, not being able to walk on my own vs. now I can but Iām still so off balance so I guess thatās an improvement?
She also did the VOR test? I think. On me with moving my head and then having me read the eye chart and it was normal so she said if i had any damage it would show through that test
Obviously if I had damage it would have to be shown through the spinning chair, ENG, etc but she said she doesnāt want to put me through that right now because 1)she doesnāt think i have damage and 2) the treatment is relatively the same
She said that would be a long term thing
Ps- she said she saw a woman with bilateral damage 100% recover. I was like wow~
Anyways, that is the update. I REALLY hope I can get back to my baseline. I told her about my fear of vertigo and how i ;knock on wood; never truly got it and I asked if symptoms could transform and she said new symptoms could come up and it happens to people. Because i feel this time around, 8 years later, my symptoms are a little different than before i was on medicineā¦ there is more head dizziness. So she said its possible along the line i get vertigo, but with the preventatives and the klonopin, avoiding triggers, it keeps it at bay
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IMHO MAV is less about ādamageā and more about instability and loss of homeostasis. Youāll get better! hugs!
Thanks i sure hope so!
@lunapalm We all care! We want to hear your updates and help in any way we can (or at least I do personally). I am still new to the diagnoses and havenāt been on meds that long, so I canāt really give any opinions on that, but I can listen and be supportive! I sincerely hope you feel better soon! Keep us updated!
Thank you 