Constant Silent Migraine For 9 Months Now

[dino551]

Hi All-

Just wondering if anyone has had this type of experience for this long of time? I'm constantly dizzy, nausea, light sensitive, vertigo-like issues. I can hardly go anywhere in public and if I do, it is for a brief moment in the store. I have been on everything under the sun...Maxalt, beta blockers (currently Nadolol), (verampamil- currently, (depakote,-currently), (Lexapro-currently), (Abilify-currently), (Nexium-currently). I tried Topomax and it did nothing. I'm finishing my second round of high dose steroids and seem to be worse than better. Extremely off balance, heart racing after I take them, restlessness, hungry--but then nausea when the food hits my mouth. My doctor wants me to try an intravenous dhe treatment that will put me in the hospital to try to get rid of this migraine, but I have attempted twice with no success. It constricts your arteries after they give about 9 doses of 1mg dhe that should take away the migraine for at least 6 months according to my neuro. However, the side effects are terrible and that is why I haven't been sucessful as well as overwhelming anxiety on these attempts.

I have autonomic neuropathy--more or less POTS, but it varies a little from typical symptoms of POTS. Those symptoms haven't really been the culprit lately. I just can't get my head to stop this nonsense. I have a hard time watching tv, using the computer, talking on the phone, eating aggravates my head (any sort of food). I cannot watch tv, talk on the phone, or work on the computer and say eat something at the same time. It's like too much info for my nervous system...it's annoying. There is alot more issues....but I'm sure we all have our strange ones.

Oh well...I can go on and on...if there is anyone out there that has a recommendation, medicine recommendation, doc recommendation, anything to help me. Please respond...thanks so much!

Christine

[mkoven]

I would consult a neurologist who is really expert in dysautonomia. Your symptoms could come from any number of problems. Too often, weird symptoms get chalked up to migraine. I was told I was having silent migraines, and put on some potentially dangerous meds, when most of my weird neuro symptoms are from chiari and cranial instability compressing my brainstem. My symptoms were a lot like yours-- nausea, vertigo, intermittent numbness/weakness. But now I notice my symptoms are really mechanical-- I trigger them with head/neck movement, consistent with instability/compression. I'm not ready for surgery, but bracing helps a lot. I was also much worse before getting treated for sleep apnea. My apnea episodes increased my intracranial pressure, making all the chiari symptoms worse.

Not that you don't have migraine-- but you should make sure it's not just a wastebasket diagnosis.

[ramakentesh]

Most of those symptoms sound like POTS symptoms, and not a migraine. That being said I have a number of visual symptoms that are regarded as persistant migraine aura but from my understanding its from increases ion channel activity from the sympathetic overactivity caused by POTS.

[gertie]

Do you have Meniere's disease? I have Meniere's, migraines & dys & have those symptoms all the time. It is impossible to function normally. The migraine preventive does not help these symptoms for me as well as Ativan. I hope you find something that helps.

[niki]

Dino,

I experienced the same thing, but fortunately Topamax is currently working well for me. I had POTS for several years and then all of the sudden started getting the strange symptoms like you described. I couldn't figure out what they were, but I knew that whatever it was it was something totally different that what I had experienced with POTS before and eventually my doctor told me that they were silent migraines and he was absolutely right. Basically, I had a constant migraine for over a year a straight 365 plus with out any relief at all and like you I could barely do anything, I tried all kinds of things, but finally got relief after starting topamax. I think mine was triggered by taking anti depressants. For whatever reason I haven't had much success and have actually felt a lot worse with the standard treatments. Right now I only take two medications, fludrocortisone for POTS and topamax for both migraines and complex partial seizures. I control the rest with the normal extra salt and fluid intact, wearing my compression stockings (when I must, we have a love hate relationship) and other things I have found that work for me.

When you talked about having a hard time talking on the phone, using the computer, etc... I would experience the same thing. I still do at times, but to a much lesser an tolerable extent. It was so overwhelming. Eating was terrible also because it would cause severe pressure over my temples and I felt like they were going to explode, it was awful! I would also get severe facial pain and sometimes numbness. I am sitting here racking my brain trying to think of something that worked that I could tell you to try, but there really wasn't much for me either. When you tried Topamax what kind of dosage where you taking? Did you start off gradually or at a higher dose from the start? I started off at 25 mg and have gradually increased and it has worked out well so far. Well, I have to get going my husband is yelling at me to come watch the FSU vs Florida game. GO FSU, although he would disagree! I honestly hope you get to feeling better! Feel free to PM me with anything Take Care!