I have not been very active in general, but decided last night that I should at least share my latest experience.
In short - had VN about 8 years ago and never seemed to recover after that. Did every test and tried a whole lot of medicines without any success. In fact, Topamax almost killed me. In October last year I decided to see a psychiatrist as I had an idea that my condition was caused by my brain telling my body that something was still wrong. I read a lot of articles about this and my symptoms related very well to what I read (don’t they always).
Anyway, to cut a long story short, I was put on Cipralex again.This time I said to myself that I will not stop until I have reached 6 months. The usual silly side effects of which the sexual ones are the worst and still persist. Bottom line is that I feel 100% on most days and have the occasional bad ones. The doctor explained that I suffer from anxiety (brought on by the VN) and that this can then almost mimic any symptom. Hope this helps
Wow what a fantastic post to read in the morning! Obviously I am sorry that you suffered for so long but pleased that finally you have found your cure its very interesting the link between our brains & body, we all know that having Mav comes hand in hand with hideous anxiety but I never new that our brains were tricking our bodies!
Once again congratulations! X
that’s wonderful news- do you think it is the combination of the med and therapy that is doing the trick? Have you been doing any sort of relaxation exercises that you think might help?
You said you are 100% on good days that is fabulous- how bad % is your worst day? What were your symptoms and which ones remain?
Do you think your anxiety was causing the symptoms to appear, or do you think once your anxiety was under control, your brain finally compensated?
Did the medication make you feel worse at first and how long did it take for that to go away?
The doctor explained that I suffer from anxiety (brought on by the VN) and that this can then almost mimic any symptom. Hope this helps
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Hi Gerhard,
Your case is exactly like mine. VN which triggered the migraine big bang and then non-stop hell. I got well – high 90% range on Cipramil – a very similar drug to yours.
I disagree with what your doctor told you. This was the reasoning I got too. What has happened is that your VM has very likely responded well to an SSRI. Yours and my case fit well with what is called MARD or Migraine Anxiety Related Dizziness. Anxiety is a commone “side effect” of a vestibular disorder. Some are more prone to it than others and migraineurs are much, much more likely to suffer from anxiety and depression – all solid fact and well known in the science literature.
While it is true you have had anxiety and the SSRI would have made an impact on that, I would argue that it goes way beyond that and that your migraine brain has responded well to having the serotonin levels tweaked.
p.s. would you mind posting your success story in the sticky thread above? Thanks. Great outcome and glad you have it all under control. You may find that after a while you can cut your Cipralex dose in half as a maintenance dose for your migraine brain and greatly reduce the sexual side effects that are dose related.
Just to put some facts on the table - I have never been diagnosed as having migraine or any related issues.As much as we have great doctors in South-Africa,there are no specialists that I know of that focuses on MAV.That said,I could well have MAV…
I believe relaxation techniques help - did Autogenic training for a while.Think that therapy could be helpfull.
Bad days are not bad - head tightness and a bit of dizziness
Symptoms where plentifull -felt that I was not 100% here on earth,floating somewhere else?
Sort of tunnel vision
Living in a dream
Concentration issues
Tired(fluctuated,but bad at times)
Depression
Dry eyes
Anxiety
Curtain effect - felt that I could not focus on an item for long enough before my vision would blurr over
Pressure in fore head and nose bridge
Rocking sensation almost permanently and when standing still I would rock back and forth
Pins and needles in left foot(still happens)
I also started repating words over and over in my mind -think it is called perseveration
Tinnitus( a bit better now)
Grinding my teeth
Never had true Vertigo
I think anxiety of not knowing what was causing all these sysmptoms where driving me crazy.
I did feel worse at the beginning,but as we all know,you need to hang in there.
I started feeling better after about six to eight weeks.This could be different for all of us.Now on 9 months at 20mg(slow to get there)
VN(Vestibular Neuritis) This was diagnosed initially and after that all other doctors latched onto this and kept telling me that this was what was wrong with me.Dr Hain told me that VN does not continue for so long…I believe that my brain was telling me otherwise(my opinion)
Scott-take note of your comments-makes absolute sense.
-felt that I was not 100% here on earth,floating somewhere else
Sort of tunnel vision
Living in a dream
Concentration issues
Tired(fluctuated,but bad at times)
Anxiety
Curtain effect - felt that I could not focus on an item for long enough before my vision would blurr over
Pressure in fore head and nose bridge
Rocking sensation almost permanently and when standing still I would rock back and forth
Never had true Vertigo
I live in Turkey and seen 9-10 docs so far. Only one of them (last one) diagnosed MAV finally after 6 months it started. Now I understand that I need more time (just been 15 days of Cipralex 5 mg) for %90-100 and wait for the med works. Before that I used prozac for 18 days that made me excessive happy which was not good. and then lustral for 5 months, not worked at all.
What makes you think you had VN apart from the one diagnosis? Was there any acute stage that you can identify with this? Did it hit you hard for about 6-8 weeks and then get somewhat better? Any indicators you are aware of? Could this have been migraine from the start?
Hain is quite right. VN or labyrinthitis do not go on and on and on. A highly regarded neuro in Sydney told me that the people who get these conditions such as BPPV, VN or labs and show up in his office after a period of time are almost all migraineurs. We are the ones for whom these otherwise self-limiting conditions turn our lives into an ongoing living hell.
scott i absolutely agree with everything you are saying- I just wanted to mention that my mom got labs really bad when she was 19- hers went on for years before she felt normal, but she did eventually fully recover. this was also before vrt- but still- she was an active 19 year old…she never developed mav- but i guess there are exceptions to every rule.
why didnt I get her genes so that i never developed mav uggggggghhhhh!
My guess is if your mother truly had only labs going on then her lengthy period of feeling unwell was due to something complicating compensation. I know a guy (Subs30) who had a BPPV attack for example. He was unwell for about 9 months to a year because of a vision issue. Once he had his prescription fixed and VRT tailored to the specific deficits he still had, he became well very quickly and never looked back.
You would not, say, have the acute labs or VN attack at onset and then months later be wiped out all over again. To me that would indicate migraine as a complicating co-factor. Compensation from labs and VN is generally a linear process though it can also be 3 steps forward and 2 back at times. Vestibular compensation is like learning a new language for the brain. And just like if you were fluent at French as a second language you learned as an adult, it can all fall apart quickly if you suddenly found yourself in a stressful situation, such a as car accident. You’d be struggling for words in French but English would still come easily – the language you were hard-wired for as a child. Same with balance though the original hard-wired balance info seems to be permanently trashed after labs, VN or a bad case of VM.
what is also odd is that it sounds like she has never really experienced decompensation…she claims she has gotten a little dizzy when sick but balance never affected…I have no idea. She said it took her like 20 years to be able to sleep on one side again. She is 60 now and I think she also has BPPV at this point. Oh also forgot to mention- she has had 2 brain surgeries and no MAV to speak of…damn my genes. She can also take any medication and not have it affect her balance which is a major problem I have.
Scott-yes I had it like you said.Definite accute stage after which it fluctuated untill almost gone and then the other sh*t started.I also think that I may still have some BPPV but that is purely a shot in the dark.Reasoning is that on the odd occasion I will have a very quick vertigo spell when I turn over from my right to my left side(in bed)
Alspropris - currently on 20mg for about 6 of the 9 months.Never tried Propranolol but did use many other meds.
Gerhard – again you are describing exactly the same thing that happened/s to me. I still have trouble lying on my left and right sides but not always. Turning in bed in the mornings can cause a spin but only if I am pushing the trigger load or have exhausted myself physically.
“Anyway, to cut a long story short, I was put on Cipralex again.”
How long did you try it for the first time? Why did you end up quitting it? Just curious as I know that sometimes drugs don’t work or work as well the 2nd time around?
Did you have any trouble walking/balance and did it help you with this?
Wonderful that you are feeling better- it must be amazing after 8 years of this!!!
I think it s not impossible to get rid o mav %100. Gerhard is telling the same things happened to me as well. And i was nearly recovering %97 - 2 months ago if i didnt put myself in a stressful and exhausting situation again. Then it started again and now it seems a bit more difficult to reach that 97 again. But i dont think it is impossible we just need to control our anxiety and take meds regularly make a diet and try to do things making us happy as much as we can (i also started yoga can recommend it…) Hopefully we will all get over these days or years
“Anyway, to cut a long story short, I was put on Cipralex again.”
How long did you try it for the first time? Why did you end up quitting it? Just curious as I know that sometimes drugs don’t work or work as well the 2nd time around?
Did you have any trouble walking/balance and did it help you with this?
Wonderful that you are feeling better- it must be amazing after 8 years of this!!!
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Hi Sarah,
yes I tried Cipralex on two occasions.The first time I went about 4 months.I do recall feeling a bit better,but it was given for depression at that point and decided to stop due to the sexual side effects(I am not a h*rny pervert,but it did mess with my marriage :lol: )The second time I did not use it for very long as I could not cope with it.I know this does not make sense.
I had problems with walking and balance.This is also one of those weird situations in that I could stand on one leg for as long as possible but always felt off balance.
lol I can stand on one leg and balance as well as I did before mav- but I can barely walk across a room!!! so on the celexa now, would you say you walk normally with normal balance?
its very interesting the link between our brains & body, we all know that having Mav comes hand in hand with hideous anxiety but I never new that our brains were tricking our bodies!