migriane associated virtigo undiagnosed

By silentmigraine Wednesday, August 29, 2007

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HI every one, my name is jenny, I'm hoping to chat with other's about med's natural or otherwise, ive had a thirteen year illness, with no help from doc's the only thing i've ever been offered is anti -depressants which dont remove my ballance wobbling rocking swirling sensation, ive been told its mal de debarqement, for me this diagnosis is given so that you go home and live with it. anti depressants added to help you cope with the anxiety caused by the constant movement we feel. I've always been alergic to fluro light's, which make me go almost nuts, the burning at the bace of my scull,and across the top of my head, tention but never migarine head ache. in the past year ive started seeing aura, heat shimmering cirles and floating coloured blobs. emediatly after the aura at times have become incoherant for about a minute cant talk. the confusion rushing feelings in my head is frieghtening to say the least.afterwoods i'm rocking worse and have emiediate loud titinitus.which gose after a while. (i never noramly have titinitus on a rugular basis.) untill this neurologist gave me xanax. on the first day of taking have had perminat titinitus, and 3 weeks later it's still here every day .

I've EEG's MRI's seen 3 ent's and one neurologist, who said anxiety she gave me xanax, i stopped taking due to the titinitus and that it caused me more anxiety than without it. i

i'm realy not sure what that means, if a drug is supposed to help the anxiety why would it make you 10 time more stressed. during the 4 dyas taking 500 micrograms twice a day , i still saw light's blobs and balls of colour and heat wave scotoma.

i believe due to the original diagnosis of mal de debarquement i believe every doc looks at my records see's that ive tried zoloft and other anxiety med antidepressants all of wich never took away my rocking balance issue's and the lable sticks and i truly believe i'm left alone to put up with it and shut up . the lack of diagnosis itself is depressing me.

i told the neurologist about my symptoms and asked if i could try some drugs for migraine as i thought it could be migraine associated vertigo and she siad ph no thats very rare, so i'm at wits end,i'm willing to sign a waver if thats what she's worried about, so she's not held responible for what happens. sorry for going. anyway i hope to get some ideas from you all. at the moment my aura happens EVERY DAY once or twice, i cant bare to go indoor shopping as the lights kill me. I live in Australia by the way seems our docs arnt up to date with mav.And at the moment the government is planning on fazing out normal house hold light globes , and banning them for sale, i just wonder how i'll live, BY CANDLE LIGHT, how rediculas , have they considered the health risks for epileptics or migriane sufferers . arrrrrrrrrrrrrrrrrrrrrrrr. suppose i better stock up on candles and my family better get used to living in the dark.

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Comments (6) | Add comment

Teri Robert, Health Guide

9/ 1/07 5:06pm

Jen,

Hello, and welcome to MyMigraineConnection!

I'm so sorry to read about all you're going through. You might find it helpful to see an actual Migraine specialist. We do keep a listing of Patient Recommended Specialiststs that should help you find one.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,
Teri Robert
MyMigraineConnection.com Lead Expert

andrea smith

3/28/08 6:49pm

Hi Jenny, saw your post and thought I would say hi.

I am sorry that you have not found help for your vertigo. I have been a migraine sufferer for 2.5 years now, and just yesterday starting having this strange rocking sensation... I actually wobble visibly back and fourth... very bothersome. So far the doc doesn't know what it is. He gave me colonopin for it... (anti-anxsity) hasn't helped yet, but I slept great! I have also always had eye aura- not just with the migrains but always, it never stops... I read another website on the mal de debarquement and it sugested when sitting to sit on a ballance ball, I was floored but it actually worked so far... you might try that... Don't know what to say on the eyes, nothing has fixed that for me - I have been on Topomax, Indural, and Demorol shots for the migranes and it never has helped with the aura... Indural isn't doing anything for the shakeing obviously either...

I wish you all the best, get better!

Andy

silentmigraine

8/ 1/08 4:07am

Hello Andy,

I'm so sorry I didn't get back to you sooner,

before my topamax my visuals were so bad when I was on the computer, I found it hard to navigate this site, I did eventually receive a diagnosis of migraine associated vertigo, if you could call that! A diagnosis " I wouldn't"

I think that's just a symptom of migraine myself

My migraine, futures much like simple partial seizure, very upsetting.

I was left to suffer for 15 very long years, vertigo the whole shebang!

I have nothing but distain for the medical profession in any form, despicable useless creatures

They ask me if my blood pressure is always this high and I tell them No never!

Its only when I'm around Drs.

It's funny I get the same stupid look they gave me back when I tried to explain my symptoms to them years ago.

My neuro ‘s advice to me was this, ok I'll hand you to your GP she can take over from here.

Any med I give you will be worse than your illness and will make you gain weight.

Obviously, this man has no idea what this illness does to people.

I have walked around holding onto walls to get from room to room.

I sometimes can't speak,

I may not suffer migraine type pain, but do have pain at the back of my scull.

Deep burning sensation. Quite painful radiating along my neck and shoulders.

I can wake in the morning with aura, and not remember the rest of the day.

Like I have time distortions

My hands and foot flinch

My lips go numb

Alice in wonderland syndrome

I rock like on a boat 24/7/ which was my initial symptom.

I am not over weight. So how dare he say that to me?

I'm not sure how many of these symptoms I acquired along the way were also a directly related to anxiety. Trust me I had anxiety after only 1 month of vertigo.

He needs his license taken away!

Do I sound mad! To you

Well Andy yes I am.

With a lot of help from a forum friend and I'm now slowly regaining some stability, its onwards and upwards from here.

My meds will eventually be, topamax, 100mg, after waiting 3 month if not fully stable,

Adding effexor at only 37mg only, titrating very slowly on both meds, cutting in 1/4 weekly. I'm so sorry your feeling this way and hope you get the Dr we all deserve, I'm sure there's One out there somewhere.I didnt find one in Australia.

I'm not sure how many of these symptoms I acquired along the way were also a directly related to anxiety. Trust me I had anxiety after only 1 month of vertigo.

(((( hugs )))) jennyd

Andy

8/ 6/08 6:18pm

Hi Jenny, I am very glad to meet you! Out of months of searching tons of sites on the internet, lots of different posible causes, medications, multiple doctors and procedures I am still pretty much in the same boat. Your blog is the only one I ever replied to because it sounds so much like my symptoms. But I have only suffered for 3 years, I can not imagine being like this for 15 years!! Topomax was the first solution they gave me. I was up to 250mg on the topomax at the end. It worked great for about 8 months and then stoped. That seems to be the fate of most migraine medications my resurch has seemed to find... I have also come up with a constant tremmor. They can not, or will not identify it right now. I am told it's not essensial, or Parkenisons, or corea though it acts kind of like corea... they don't know... my eyes always bother me - my worst symptom. I also get spike pains in my hands and feet, and am starting to hold my right foot up constantly and hold my left hand in a funny position. it just automaticaly goes to that place... I was also just starting to get sever cramps in my legs and back that would not go away... I was on Propranonol 240mg for 6mo and was so sick and it didn't help, so now I have just started a new medication Zonegran. I am not sure the dose I am on. It has really seemed to work wonders though. I feel much better and the tremmors are actuall under control which is a side effect of this medication. It doesn't help with my eyes, but I don't feel as sick or nearly as cloudy headed (which is good as my work is very intensive and I can't aford to be druged out all the time.) I haven't taken it long enough to know if it stops the migraines though, but I will let you know. I wish you the best of luck and that the Topomax works. I found it made me very cloudy, but otherwise didnt' have much bad side effect.

Best wishes!

Andy

graftedjew

9/17/08 3:32pm

Hi,

I had daily migraines for years. They finally found out I had a pseudo tumor in my head (too much spinal fluid.) It may not be your problem, but I can tell you the med that stopped the migraines is Inderal XR (160 mg daily.) It's a beta blocker and it lowered my cholesteral to boot. It doesn't have to be that you have a pseudotumor too... the med could help either way. I am a new person.

Go bless!

Beth

silentmigraine

2/10/11 6:47am

Hi All ,

First I'd like to apologize for that huge angry rant I did back then, I was beside myself and felt all I had left was to curl up and please God? Let me die.

I'm also sorry I didn't get back to you.

I had no idea where the post went, this is such a big site and with my migraines I couldn't tolerate being on the computer trying to find it, I'm a bit more computer lit now.

Beth Thanks for your advice, it's been a few years of trialing preventative medications, without having any positive results, recently I decided to try Propranolol 40mg it also helped with my high blood pressure.

I'm also on prothiadon (dothep) 75mg a night which has helped a little; I take nighttime valium 5mg to help me have a full night sleep.

I'm by No means well and still don't work.

But life is bearable.

I've gone from seeing aura twice a day, once in the morning and then late in the evening.

To once a day.

I sometime feel as though, no one understands as its not traditional migraine.

But for us , vertigo , pain, and the rest is a very hard way to live.

Any way, thanks for answering my post, now I've found it again, hopefully I can say hello to other sufferers, and maybe help someone feel less alone.

jen

migriane associated virtigo undiagnosed

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