Vestibular Migraine - dizziness, confusion

Hi Beth,

Welcome to Healing Well. I have heard of Vestibular Migraine but have not come across anyone who suffers from it until now. Are you being referred to a Headache Specialist?? If you are not, my advice would be to insist upon it! I am currently being assessed by a Neurologist who is a Headache Specialist. Who better to understand headache and the variety of headache that there is, especially the rarer types like yours, than a Headache Specialist?

Sorry, don't mean to be bossy but just my thoughts! Keep in touch and let us know how you get on.

take care

Ann

Hi Beth,

Welcome. Wow, your symptoms sound exhausting and the fact your neurologist gave up sounds like a cop out. Obviously something serious is going on. Hopefully the next neurologist or headache specialist are more informed or more pervassive, wanting to find the cause and a proper treatment.

If these episodes are migraines a triptan migraine might help them. These include medications such as Zomig, Imitrex, Amerge, Axert. It depends on you and your doctor's preference as to which you take. In addition, did you give Topamax some time to work and did you slowly increase the dosage? Topamax works at different dosage levels for different people. I take 100 mg / day but some people find it effective at 250 mg / day. You have to build up to that slowly otherwise you can suffer some nasty side effects.

Good luck at your next appointment. Hopefully the next doctor is more helpfull.

Hi Beth,

A few of us have nicknamed Topamax, Dopamax. It definitely can cause cognitive issues and these differ for everyone and when they starts differs for everyone. I experience them at 100 mg and my friend only experiences them over 200 mg. The worst I experience is the loss of words, they're at the tip of my tongue and then I can't remember them. When added to a narcotic the cognitive issues became far worse. I know have significant memory problems. When I was working my boss accused me of lying because I would forget things I had been told. I did my best to write things down but if you don't remember writing it down you can't remember to look it up.

Did you start off at 25 mg of Topamax? If you did and already experienced those symptoms it may not be the medication for you. I suffered terribly increasing the dosage quickly. When I went back and started again slowly, 25 mg until all of the side effects subsided, then increase to 50 mg until the side effects subsided and so on until you're on a high enough dosage to relieve your migraines without throwing your life into complete disarray.

Believe me the cognitive issues with Topamax can be significant.

I'm sorry you're facing anxiety issues as well. Are you on a medication to help you deal with that? Just like depression is linked to migraines, I wouldn't be surprised is anxiety is as well.

Hi AngMichelle,

Have you discussed taking Topamax with an anti-depressant and possibly a lower dose. I used to suffer the same consequences and found an anti-depressant reduced the emotional side effects, especially the crying. I also found that reducing the dosage or increasing the dosage very slowly limited the cognitive side effects. If you start with 25 mg, wait for all of the side effects to disappear and then increase by 25 mg, wait again, etc, you might have more success. Just a thought if the Topamax was helpful.

I also have Ativan for the really bad headaches. I take it with a Toradol and 2 T3s. I find this combination significantly more effective then anything on it's own. It decreases my need to take a lot of T3s or Toradol. I take this combination after trying a triptan (Amerge, Imitrex or Zomig).

I have been suffering the same symptoms for the last 3 days.

Do you need to pee a lot and feel the need to drink lots ?

I get really jerky movements as well as the other symptoms - confusion slurred words etc and sometimes the Aura.

Been going on since I was a kid only now am I discovering what it may be.

Hello Nicky,

Yep I was tested for diabetes many years ago when I first started going to the doctors about this and there was no problem.

I have recently had quite a comprehensive range of tests for just about everything and all came back okay.

I know if I let my blood sugar drop it brings on the migraine symptoms so I never skip breakfast or have it too late.

I have also noticed triggers sucj as Hot Dogs / Nitrates Smoked (artificially smoked) food etc. And stress.

I have seen another post on this forum that compaires the feeling to FLU which hits the nail really on the head for me as I dont really get a huge headaches - just all the other symptoms and the aura.

Strangely enogh I also feel strangely well and on a bit of a high the night before I start to feel bad.....????

Thanks Nicky that's a great help.

I know I'm lucky that I don't get the pain but I'm so glad that I know what's wrong with me now!

I registered here just to reply to this thread.

I suffer from vertigo and migraines. some of the things you(Beth, though i have notice you haven't posted in this thread in sometime) mentioned are common to my symptoms.

it started about 4 months ago, i was working and i lost my balance and felt very strange. i was diagnosed with BPPV and given a prescription to serc (16mg x3/day). this did not work and i went to my own doctor, who switched my medication to bonamine (25mg x3/day) and told me to do the epley manouver, which was unsuccessful. the bonamine basically heavily sedated me for about 2 weeks, and then it was clear that it was not working.
i started to get infrequent migraines that last for ~3-10 hours, with throbbing pain and sound sensitivity. i had a CT scan and MRI performed and was refered to a neurologist who prescribed me topamax for the migraines, believing that the vertigo (which is 24hrs/day of spinning and no balance/dizzyness) is related to the migraines, ie: vestibular migraines. i started at 25mg and increased to 100mg/day over the course of a month. i had vision problems and was basically a braindead zombie, because i couldn't remember a darn thing. in that time i sought alternative care, which took the form of accupuncture and chiropractic neck adjustments, neither of which has helped.
ive weened myself off topamax, because i wasn't getting relief from the vertigo (though the migraines were reduced in severity). my body did not like that and i slept poorly (sometimes 20hours a day without feeling rested at all) and generally felt like crap. i am off topamax now and i feel slightly worse than when i was on it, but i do not get the stupifying side effects. also i lost my ability to read (accomodative focus) due to the blurred vision and have dropped out of university for the time being.
the next attempt at migraine prevention is more drugs; amitryptaline. i am supposed to start at 10mg and increase to 30mg over the course of 10 days. the neurologist has also scheduled an ENG (electrical testing of the inner ear), but it won't be for at least 4 months.
my balance is still exceptionally bad and i have had the vertigo constantly for the past 4 months. i had to quit my job as well because manual labour is pretty much impossible, not to mention driving myself to work.

anyway, that is my first post. perhaps i could have started my own thread but i didn't. i hope you(Beth) are feeling better and wish you good luck.

gravol does not help, it is that same symptomatic solution as the serc & bonamine

Hi BethStew,

I started having migraines with dizziness about 4 years ago, having on average 2-3 a week with varying severity. The dizziness rarely occurs with the headache. But, I know I will get a headache when the dizziness comes as will nausea, vomiting, blurred vision, pain and fullness in my right ear and confusion. There is also a stabbing pain in my right eye and zig zag patterns. Everything occurs on the right side of my head. I can't take meds like Imitrex due to history of high blood pressure and a prior blood clot. about 2 wks ago I went to my MD for a shot of Nubane, we decided to start Topamax 25mg daily to see if it would help. I took it that evening and the next morning. I had to stop the Topamax because I had a reaction to it. Trying to work is hell as I commute in heavy traffic and the dizziness makes me feel like I'm on a perpetual Tea Cup ride at the fair. It is getting worse for me. I fainted 3 times at work the other day because the spinning was so bad. I am going to an Audiologisit tomarrow to have some hearing tests done as well as an ENG (Electronystagmography) test. I will take these results to a Neurologist who specializes in Vestibular Neurology. I don't know where all this will get me. Hopefully I will get an accurate diagnosis and some help. I understand what it is like to feel hopeless. Today is Sunday and it was a beautiful day. I ended up sleeping it away because of a migraine. I feel like life is passing me by. There has to be help out there!!!

Spike,

Yes, it does go away at times and I just have the migraines with eye pain. But, when the vertigo comes it stays for some time. It's hard to say just how long. I am just now realizing that it is associated with my migraines. In the past I just thought I had ear infections that did not respond to treatment so I didn't keep track of it. I know better now. I get vertigo before I get a headache but I may go for a day or 2 with extreme vertigo before the headache. But, even after the headache is gone I still have some vertigo, it just isn't as severe. In the past, the vertigo would finally stop. I really thought it was just difficult, reoccurant ear infections. This time it is worse though and it hasn't gone away yet. This time the vertigo started about late July. I have had CT's done and they have all been negative. However, they have only looked at my brain. I read that an MRI can be useful for vestibular disorders. I will be discussing that with my doctors after I have the ENG and Audiometry exam done.
What about you......does yours come and go? Do you get migraines with yours?

No, the doctors have not said anything about them always being on the right side of my head. Two doctors have told me they suspect Meniere's Disease. I saw an Audiologist yesturday and the exam concluded that I have a hearing loss in my right ear. Other than the migraines and vertigo, do you have other symptoms that may suggest Meniere's? I have to say that my vertigo is not as bad as yours. This is an example of what it is like for me. Sunday I had a migraine and slept all day, Monday during the day the headache was gone but I was dizzy as heck. Monday night/ Tuesday morning in my sleep I was aware that I had a terrible headache. It would wake me up pounding, but I would fall back to sleep. I took my Fiornal when I got up. I went on to work, the dizziness was gone but I was nauseated and my vision was extremely blurred. My eyes were droopy and I felt like I was in a haze all day. Today I went to my MD and got a shot of Nubane/Phenergan. Right now, the headache is gone and I am not dizzy. To me, the hopeless feeling comes in because I know that I will only have relief or feel "normal" for a short amount of time. When I get a shot, I get relief for a few days. I worry about my job. Today I got my referral for the ENG and a Neurologist.