I finally got to see a neurologist for my daily 4 months of head tingling/pressure and floor bouncing/moving when I walk. She said it couldnāt be a migraine or associated with migraine as migraines do not last this long and would not occur daily as mine does. We talked about my sun triggered headaches and he thinks that migraines and vertigo from them is a short and not chronic experience. I was very confused after I left.
I had 2 amazing days where I had very few symptoms and then out of nowhere the back/top of my head started with its tingling/pressure sensation and the floor began to feel like a trampoline when walking again. Does this happen? I have tried adding magnesium and coenzyme Q 10 to treat myself but have had very little luck.
I am confused and lost and donāt know how to get rid of this whatever it isā¦
I too am very confused by your Dr.
My Dr has stated just the oppositeā¦ all the symptoms are related to Vestibular migraineā¦ with or without headache. Thatās what makes this disorder āchronicā. I think maybe an otolaryngologist may give you a different diagnosis.
is it possible to see another neuro or otoneurologist familiar with migraine?
I think your symptoms are migraineā¦ just curious, if it is not migraine, what did your doctor say you have?
Strange she doesnāt think migraines cannot be a daily occurrence for some people?! Seems like a red flag to meā¦
My first Neurologist also thought it was probably vestibular. He was an older gentleman and
didnāt seem to be up to date regarding migraines - I didnāt see any migraine reading material in the waiting rooms. I think he specialized in classic Neurology things like Parkinsons and the like. My second Neurologist, whom I see now, just finished his residency two years ago so heās pretty young and up to date with the latest migraine treatments. I even flat out told him that I donāt have headaches, just head pressure and dizziness - yet he is treating me for migraines.
Anyways, I think it may be worth getting a second opinion. Sorry you are getting the run around, but unfortunately this is normal with pesky balance conditions such as these.
How awful! And yes it happens! Just today I went to the grocery store and the floor turned into a Jello! I too get the tingling in the head as well, almost like I can feel my brain short circuit. My legs also feel so weak, like I have no bones in them at all. The only difference is natural light is my friend. Itās fluorescent lights that kill me. I would definitely look for a second opinion.
If you havenāt try using an app on your phone. I use the migraine buddy app to track all my symotoms, sleep patterns, triggers, etc. this way when I go to the Dr I am able to remember and show them my nifty graphs.
Sounds a nifty little device. Real-time recording is the most accurate I understand.
Yes, I could have said that for many years. Any sort of natural light even bright sunshine, no prob, as long as I had a sunhat on, not wide brimmed just to keep sun off my jet black hair. My early attacks were nearly all after restaurant visits. Mixed/combined lughting was wirse. I live with fluorescents even now in the kitchen and utility rooms. Sensitivity to natural light was the last to develop for me then my photophobia became almost absolute. Near total light intolerance. We are all so different, Helen
Yes, I had one ENT consultant who told me I shouldnāt be that ill (ie bed bound) with what I had wrong with me. He failed to say what I was supposed to have wrong with me though which retrospectively made his statement seem even more peculiar. They all have their own beliefs/hypotheses. Just chalk it up to experience and either see another neurologist or a neuro-otologist who may do further investigations like MRI, or, as @turnitaround says ask your doctor to try Migraine preventatives, such as Amitriptyline. I suspect a diagnosis currently may prove difficult because you donāt seem to be exhibiting sufficient symptoms to tick all the right boxes. Helen
Trampoline floor, marshal mellow floor call it what you want classic symptoms. Try another doctor. I have it at the moment my legs muscles always ache as I guess there constantly fighting to keep centre of gravity. Ami used to calm it down for me but not anymore though.
It is why it is so hard to find a solution for these issues. You ask three doctors and get four opinions and not all of them are right. I hate it. You have to decide for yourself. A second or thrird medical opinion might be helpful.
After a few eye consultants and three ENTās, all of whom were anxious to send me away, far away, anywhere else outside their consulting room all Iāve ever had is two āProbable migraine associated vertigoā diagnoses, once from a neuro-otologist, and the second from a migraine specialist neurologist. The good, or at least better, news was that there were migraine preventatives which might help which was better than twelve years of BPPV āand thereās nothing we can do about thatā so donāt bother us again doctors Iād previously encountered and, once Iād read if the preventatives worked, it might well have been MAV youād had, I accepted the āprobableā diagnosis, and headed for the pills! Helen
I agree. Focus on the treatment. There are so many unknowns and shallow diagnoses. The science just isnāt there yet (only last year they discovered a new part of the inner ear they never knew existed!!)
Itās probably good idea to have MRI etc to rule out nasties but I think if only local doctors recognised the early possible symptoms it may be good idea to just try a preventative for a while first especially if travelās proving difficult or you have to pay yourself upfront in limited funds. Iād be interested to know but alot of āExpertsā say it makes no difference how long itās been untreated. I doubt that. Caught before it goes chronic, I think is more than half the battle with MAV, whereever itās come from or what caused it initially. Even if somebody could pin it down it seems rare thereās a quick even possible fix. General Practice Medics need more awareness of the symptoms. Caught early I think they should be able to sort many MAV cases with meds. Helen
Good decision. We each have a different journey which in the doctorās defence makes it hard to solve, but it helps if they care. I have an issue because i get every side effect of every medicine. Many are unplesent and some will damage your organs. We shall seeā¦
want to add also that my neuro said that mdds is treated in similar ways as vestibular migraine, (benzos, venlafaxine, zoloftā¦), so again, treatments are similar so the diagnoses sort of donāt matter much.
Thatās rough. But you arenāt alone there as you know. Iāve always been med sensitive but didnāt know it might be because of MAV because until four years back I didnāt realise I had MAV. Two 2mg diazapam once made me stone dead asleep for 10 hours straight. Nobody could awaken me. I was lucky my GP chose betablocker as preventative. I couldnāt tolerate the first she chose, Bisolol fumerate, which in retrospect was even more lucky cos her next choice, Propranolol, seems the most commonly used one to treat MAV. long may it continue. Everybody has medical history and comorbidities which preclude certain drug classes, not that my doctor would have known mine at the time she chose Propranolol but whichever way you look at it, despite that long list of preventatives, I suspect probably half arenāt suitable for any particular individual one way or another any way. Frustrating, isnāt it. Helen
