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Neurology Visit Help


#1

Hey all,

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 couldn’t 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 don’t know how to get rid of this whatever it is…

Thanks.


#2

I’ve had swinging floor and marshmallow/ trampoline floor. Awful feelings. Recommend Amitriptyline. The symptoms eventually disappeared. Good luck!!


#3

I too am very confused by your Dr.
My Dr has stated just the opposite… all the symptoms are related to Vestibular migraine… with or without headache. That’s what makes this disorder “chronic”. I think maybe an otolaryngologist may give you a different diagnosis.


#4

is it possible to see another neuro or otoneurologist familiar with migraine?
I think your symptoms are migraine… just curious, if it is not migraine, what did your doctor say you have?


#5

She said “I think this is something vestibular, maybe MDDS” can take clonapin if you want"…


#6

Strange she doesn’t think migraines cannot be a daily occurrence for some people?! Seems like a red flag to me…

My first Neurologist also thought it was probably vestibular. He was an older gentleman and
didn’t seem to be up to date regarding migraines - I didn’t 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 he’s pretty young and up to date with the latest migraine treatments. I even flat out told him that I don’t 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.


#7

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. It’s fluorescent lights that kill me. I would definitely look for a second opinion.

If you haven’t 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.


#9

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


#10

Yes natural light is a big help.


#11

Yes, I had one ENT consultant who told me I shouldn’t 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 don’t seem to be exhibiting sufficient symptoms to tick all the right boxes. Helen


#12

interesting, my neuro told me that mdds is being proposed to be on the migraine spectrum, but specialists have not agreed on this.:woman_shrugging:t4:


#13

Glad to hear there are still some doctors with their feet on the ground!


#14

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.


#15

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.


#16

After a few eye consultants and three ENT’s, all of whom were anxious to send me away, far away, anywhere else outside their consulting room all I’ve ever had is two ‘Probable migraine associated vertigo’ 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 ‘and there’s nothing we can do about that’ so don’t bother us again doctors I’d previously encountered and, once I’d read if the preventatives worked, it might well have been MAV you’d had, I accepted the ‘probable’ diagnosis, and headed for the pills! Helen


#17

I agree. Focus on the treatment. There are so many unknowns and shallow diagnoses. The science just isn’t there yet (only last year they discovered a new part of the inner ear they never knew existed!!)


#18

It’s 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 travel’s proving difficult or you have to pay yourself upfront in limited funds. I’d be interested to know but alot of ‘Experts’ say it makes no difference how long it’s been untreated. I doubt that. Caught before it goes chronic, I think is more than half the battle with MAV, whereever it’s come from or what caused it initially. Even if somebody could pin it down it seems rare there’s 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


#19

Good decision. We each have a different journey which in the doctor’s 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 see…


#20

want to add also that my neuro said that mdds is treated in similar ways as vestibular migraine, (benzos, venlafaxine, zoloft…), so again, treatments are similar so the diagnoses sort of don’t matter much.


#21

That’s rough. But you aren’t alone there as you know. I’ve always been med sensitive but didn’t know it might be because of MAV because until four years back I didn’t 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 couldn’t 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 aren’t suitable for any particular individual one way or another any way. Frustrating, isn’t it. Helen