Dear Rob,
some of the people Ive talked to from the mal de debarquement site
are trialing it now so I should find out in time how they find it.
Iāll let you know, but most of them dont believe they have migraine silent or otherwise. even though from what ive been reading lately , so many vertigo issews do appere to have a possible migraine syndrome involved,somewhere down the line, some even believe meniers has something to do with migraine or at least, often go hand in hand.
ive been on verapamil 240mg slow release for aprox 9 weeks now and have only found a tiny change in my symptom frequency.
I have to be on verapamil for my svt, (heart) It dose worry me if being on the verapamil will stop me from being alowed to use other drugs incase of interactions.
this mav thing is all new to me, Ive only today worked out when Iām having a silient migraine. the symptoms I have effect my mood,and cause me to be confused,and the vertigo of cause, but know one seeās it from the outside, only my family notices the change in me. so Iām keeping a diary as of today.
any way , best of luck with this stinking rotten illness. hope we all get some meds that work without too much hellish symptoms.
jen
Rob - you said that some of you are having success with Lyrica. My doc is of the opinion that Lyrica and Keppra are only for headache symptoms. Do you know that either one of them has also helped people with their dizziness? I need to clarify this before he selects an anticonvulsant for me - he is sold on Top for dizziness.
Thanks for your input
Julie
Hi Julie,
I know of myself and another person here who have found Lyrica helpful for the dizziness. I personally have not found it that helpful for the headaches actually, more for the dizzies. But for me, the dizzies are the most incapacitating symptoms. I havenāt heard alot of success stories with Topamax, and in most cases people canāt handle the side effects. But its different for everyone. You never know, Topamax may be the right med for you.
And jennyd, that is interesting about the mal dāembarquement people. Can you let us know how they go? That sounds tricky with the SVT. I am pretty sure though that there are anticonvulsants that donāt interact with verapamil or the SVT. Your MD should be able to tell you.
Hi all,
What a relief to find so many other people going through the same sort of experiences as myself. I have only just been diagnosed with MAV in oct 09 and am taking Topiramate. I have been off work now for 15months and have been suffering for all that time.I have been under ENT and local neuro but was referred to the National Neuro Queen Sq with a suspected balance disorder but MAV was diagnosed. To be truthful I have not been right for the last 3 years or so but it all got a lot worse sept last year (08).
I have really bad ābrainfog/cognitiveā problems. I worked for the NHS in accounts for the past 9 years where attention to detail is vital and timescales are tight for month end and year end budgets etc. Also its very stressful. I feel like I am on another planet alot of the time and struggle just trying to run my home yet alone do a job. I have just had my contract terminated on ill health grounds.
Itās like Iām a totally different person to the one I used to be. My family and friends have been very supportive although shocked at the changes that have happened to me. I also have a condition called peripheral neuropathy and this affects my walking. So what with the dizzies etc and walking difficulties Iām a bit of a wreck at times (Iām only 51) supposed to be the new 30ā or 40ās so they keep saying!!!
Using a computer is very difficult as well I have to check myself very carefully as I make a lot of silly mistakes and I find I go through phases where I donāt use it at all for a few days. My concentration levels are appalling and I loose track of conversations and all appointments have to be noted very carefully in my diary and calender.
Iām due to London again next week. Iāve been told there are at least 5 different types of medication to help treat this condition and also I may benefit from vestibular therapy. I have also suffered high pitch hearing loss and sufferer with constant tinnitus and have a hearing aid as well.
This certainly is a life changing condition.
Anyway I wish you all a happy and healthy new year.
Marian 
Hi Marian
Itās a long time since anyone posted on this subject and in that time Iāve received a definite and completely different diagnosis. I have relapsing/remitting MS which was diagnosed about 18 months ago after loss of sensation in my legs. Now I know what was causing my balance problems and dizziness/vertigo for the previous 14 years! Not MAV, not Meniereās but MS afterall. So much overlap of symptoms between neuro diseases, it can take years to get a clear diagnosis.
Good luck to anyone still battling these symptoms!
Happy New Year to all.
Chris x
Hi That was an interesting diagnosis. When I was initailly seen by our local physio last year and the doctor at my occupational heatlh dept where I work, they where both very concerned that I was showing symptoms of MS. They asked really detailed questions about my symptoms. When I was diagnosed with Peripheral Neuopathy I was not given any scans etc just pins in my hands and feet, reflex hammer tests and blood tests. They suggested asking my GP for another referral back to the Neuro locally and where hoping he would do more tests but he didnāt. He suggested a referrral to London for balance disorder treatment but MAV was diagnosed. They are referring me in London to see somebody else for more investigations. I have an aunt with MS and she is very concerened that I show signs of it so Iām waiting to see what happens.
Some of these neuro conditions have such similar symptoms its really difficult to know what to make of it all.
Marian
Have you ever found a fix for the brain fog?
What is neurontin? If I spelled that right 
Cognitive decline were some of my first symptoms! Incoordination, word finding, slurring of words, just not as smart/quick as I used to be. Also a feeling of derealization and floating. Just not really present. They originally came in waves lasting for a minute and would go away. Then as the years went on these waves became more frequent and lasted for longer and longer periods. Now itās 24/7. Only recently did I have vestibular symptoms like feeling Iām on a boat, internal/external tremor. I really feel your pain!
Yep, 24/7 disconnected feeling. I feel incorrect in the space around me, 24/7. My vision is always off and things always look a tad farther away than they really are. I get a bout of brain fog a day, at no particular time, that lasts an hour or more. The above symptoms are amplified, I feel very stupid, Itās hard to converse with people but I know what I want to say, itās like Iām on some weird drug when this happens. It feels like Iām stoned. Maddening
I have the brain fog from time to time, but not every time. I always have the dizziness, vertigo and sometimes headache in the front of my head. I experienced the brain fog, or at least I think it was the first time, about a year ago. I was standing in my own kitchen and suddenly realized I didnāt know where I was. I very nearly had a panic attack. I broke a glass in the process because my movements were imprecise and moving in slow motion.
The insidious thing about the brain fog is it keeps me from processing whatās happening and it can sometimes takes a couple of hours to realize Iām having an attack.
I have tinnitus 24/7 and a 40% hearing loss in the left ear along with a 100% comprehension loss in that same ear. When the attacks happen, I always get pressure in the left ear and sometimes in the right ear.
Iām having brain fog this morning with a slight balance issue. No vertigo as yet. Only a slight sensation in my frontal lobe. I canāt identify it as pain, vertigo, or just dizzy. Thatās the problem with brain fog. I have trouble deciding whatās going on with my symptoms.