Vestibular Migraine - dizziness, confusion

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BethStew
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Date Joined Oct 2006
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   Posted 10/4/2006 9:17 PM (GMT -6)   
Anyone out there diagnosed with vestibular migraines? These are migraines without a headache (sounds silly). I get dizzy / feel off balanced, confusion, nausea, blurred vision, sensitivity to bright lights, ear pressure, mild sinus pain. (I have not been diagnosed with vestibular migraines, my doc only told me that this was dizziness due to migraines. I came up with the vestibular part thru my own research.)
It comes on out of the blue very strongly and lasts about 3 hours. After that I feel exhausted and very emotional.
This last time I have had the symptoms for 2 weeks (not as severe as with an attack) I come in and out of it, sometimes feel better than others.
My neurologist says my MRI & EEG are fine. She had me try Topamax & Diamox which did not help.
Today she said that she did not know how to help me any further and referred me to another doc.
Do any of you suffer from this? Have you even heard of it? Any help would be great, I am getting so discouraged and this is negatively affecting my work.
Many Thanks!
Beth

Annuk
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Date Joined Jan 2006
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   Posted 10/5/2006 3:25 PM (GMT -6)   
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

BethStew
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Date Joined Oct 2006
Total Posts : 3
   Posted 10/5/2006 5:38 PM (GMT -6)   
Thank You Ann.
Actually, my first neurologist gave up, I am going to see a new one tomorrow, but also have an appointment on Nov 20th to see a headache specialist. I am seeing this neuro. for the meantime and hoping he can help me.

Nicky (coquitlam55)
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Date Joined Jul 2005
Total Posts : 505
   Posted 10/5/2006 6:28 PM (GMT -6)   

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.


Nicky
 
"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present."
I'm working everyday to overcome the pain and depression that comes from my chronic migraines.


BethStew
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Date Joined Oct 2006
Total Posts : 3
   Posted 10/5/2006 7:35 PM (GMT -6)   
Hey Nicky,
Thanks for getting back to me!
I only tried Topamax for one night. I found it made me really restless and increased anxiety.
I have been thinking of trying it again, I will see what the doc says.
My concern with Topamax is that it can cause cognitive issues like not thinking straight.
Altough right now, that would proabally be the least of my issues.
Have you had this? What is your experience with Topamax?
I also have an anxiety disorder I am try to keep under control while going thru this. It's not easy!
Thanks so much for your kind words!!
Beth

Nicky (coquitlam55)
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Date Joined Jul 2005
Total Posts : 505
   Posted 10/5/2006 7:53 PM (GMT -6)   

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.
Nicky
 
"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present."
I'm working everyday to overcome the pain and depression that comes from my chronic migraines.


AngMichelle
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Date Joined Apr 2006
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   Posted 10/6/2006 1:35 AM (GMT -6)   
May God bless you on this journey of understanding and treatment. Its hard, I'll admitt. I do not suffer from your symptoms, I have Chronic Complicated Migraines. I had great success with topamax, but had to stop using it because of Kidney stones, and cognitive issues( I would lose my way home, couldn't follow a recipee, cried all the stone, anger, etc. My parents though I was losing it, but it stoped a few weeks after i stopped the med. I really wish I could have stayed on it, it was amazing only have 2 migraines in 2 months. I now have they once every 5-7 days(sometimes more). I also take Imitrex Inj. and sometimes(if i'm lucky) this will work well. I really hope your Nov. appt will help you. I have been referred to The Diamond Clinic in Chicago. You should check it out if your able(1-800-headache). I really hope to find the money to go.
Best to you my friend.
Oh, PS: I have been given Ativan PRN for bad migraines to help me relax and calm that panic feeling. It helps. Just a thought.

Nicky (coquitlam55)
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Date Joined Jul 2005
Total Posts : 505
   Posted 10/15/2006 6:54 PM (GMT -6)   

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).

 


Nicky
 
"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present."
I'm working everyday to overcome the pain and depression that comes from my chronic migraines.


humbling pains eh
New Member


Date Joined Oct 2006
Total Posts : 12
   Posted 10/18/2006 8:31 AM (GMT -6)   
helloo, just curious as to if you have tried the oxygen treatment.
it seems to help a lot of people eh, including myself.

cant tell if this new pill is working"veramapil" but its been 6 nights i can sleep. hope its the end of my cycle but maybe its the veramapil. whos knows eh.

but a small suggestion is for immediate relief try the oxygen.
7 to 10 to 15 litres aminute on a non rebreather mask for ten to 15 minutes. between those to 10 to 15 minutes is when it works.
dont force it thouhg if within 15 minutes it doesnt work try something else. really hope this works for you it saved my life and my sanity.

peace

StressedChef
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Date Joined Aug 2006
Total Posts : 6
   Posted 10/18/2006 10:42 AM (GMT -6)   

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.


Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 10/18/2006 8:39 PM (GMT -6)   

Hello StressedChef,

Welcome. You mentioned in your post about having to pee a lot and drinking lots of water. These symptoms with confusion, slurred words, and headaches could all be indicative of diabetes. Have you ever discussed these symptoms or diabetes with your doctor? Have you been tested for diabetes? (i.e. fasting blood glucose test?) You may want to investigate if you haven't. Blood sugar can really affect headaches and left untreated diabetes can be serious.

 


Nicky
 
"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present."
I'm working everyday to overcome the pain and depression that comes from my chronic migraines.


StressedChef
New Member


Date Joined Aug 2006
Total Posts : 6
   Posted 10/19/2006 11:53 AM (GMT -6)   

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.....????


Nicky (coquitlam55)
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Date Joined Jul 2005
Total Posts : 505
   Posted 10/19/2006 2:14 PM (GMT -6)   

Hi StressedChef,

Unfortunately, that sounds familiar. I too have been tested for many things and come back as a completely healthy person with unbearable pain.

I too am sensitive to my blood sugar dropping and avoid skipping meals. You mentioned hot dogs, nitrites and artificially smoked food triggered your migraines. I find that any preservatives (chemicals) trigger my migraines. This includes sulphites, msg, yeast extract, etc. There is a book that contains the "migraine diet" and it is also listed at this web page: http://www.kirchnerheadacheclinic.com/diet.asp. I use this as a reference guide and it really helps minimize my headaches.

I have heard of others who suffer the other symptoms of a migraine but not as much pain. That would be a nice change as the pain is the debilitating part for me. I find that my stomach gets upset, I get nauseous and have to go bed when my migraines are really bad. I hadn't ever thought of comparing it to the flu, but I guess the symptoms are similar.

Have you tried or discussed with your doctor a triptan medication? such as zomig, imitrex, axert? These might help abate the symptoms that are not pain related with minimal side effects.

That's very interesting that you feel well the night before you get a migraine. i have never heard of that before, but I'm not a medical expert. I just have my experience to go on and what I have learned by talking to others.

 


Nicky
 
"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present."
I'm working everyday to overcome the pain and depression that comes from my chronic migraines.


StressedChef
New Member


Date Joined Aug 2006
Total Posts : 6
   Posted 10/20/2006 4:43 AM (GMT -6)   

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!

 


Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 10/20/2006 12:56 PM (GMT -6)   
You're welcome. That's what is nice about this forum, you find others who experience similar symptoms and you don't feel so alone.

Nicky
 
"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present."
I'm working everyday to overcome the pain and depression that comes from my chronic migraines.


Spike0124
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 10/28/2006 4:48 AM (GMT -6)   
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.

Nicky (coquitlam55)
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Date Joined Jul 2005
Total Posts : 505
   Posted 10/28/2006 2:25 PM (GMT -6)   

Welcome Spike0124,

Have you tried something like Gravol to help with the vertigo? I experience similar symptoms and find that Gravol helps. It is an anti-nauseant and is recommended for travel sickness. It might make you tired but you will get a good sleep and wake up feeling well rested with out the vertigo symptoms. If you don't have Gravol, let me know and I'll find out what the generic drug name is.


Nicky
 
"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present."
I'm working everyday to overcome the pain and depression that comes from my chronic migraines.


Spike0124
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 10/28/2006 4:04 PM (GMT -6)   
gravol does not help, it is that same symptomatic solution as the serc & bonamine

Nicky (coquitlam55)
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Date Joined Jul 2005
Total Posts : 505
   Posted 10/29/2006 3:08 PM (GMT -6)   

Oh, that's too bad. Are you seeing a neurologist who specializes in migraines? It sounds like you have a very complex case and need a really good neurologist with a speciality in migraine headaches.

I wish I had better advice. I can only say my thoughts and prayers are with you.


Nicky
 
"Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why its called the present."
I'm working everyday to overcome the pain and depression that comes from my chronic migraines.


jpitt50
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 10/29/2006 9:01 PM (GMT -6)   
confused

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!!!

Spike0124
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 10/29/2006 9:36 PM (GMT -6)   
thanks nicky. my neurologist specializes in migraines so i am pretty much out of ideas on the front.

your symptoms sound very similar to mine jpitt. keep us updated as to how the ENG goes because i have one scheduled in the future and am curious if anything can be done about this. driving with vertigo is very hard so i try to avoid it as best i can, but i have had to pull over and take a nap before because i didn't feel it was safe to be driving. i have never fainted from the spinning before that sounds like it would complicate things.

does your vertigo go away for any length of time? does it come before a migraine?

jpitt50
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 10/29/2006 10:16 PM (GMT -6)   
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?

Spike0124
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 10/31/2006 1:36 AM (GMT -6)   
my vertigo has stayed constant since it started in late june. i also have terrible balance because i have to rely on my eyes to know which way is down. in the dark i can't balance at all. the migraines i have about 2-5 a week, there doesn't seem to be any pattern for the migraines. some of the medications i have been on helped with the migraines (topamax), but the side effects i experienced from it were horrible. when i tapered my dose off and finally stopped topamax i have really bad rebound effects, the vertigo was worse for about 2 weeks and i got several migraines. the vertigo has been the hardest aspect to deal with, i haven't been able to do labs in university because they require standing for 3 hours at a time, so i had to drop classes.
The MRI didn't really reveal anything about whatever medical disorder i am experiencing. i think that it was mostly so they they could rule out the possibilities of more severe problems like MS, or a stroke, etc. have your doctors said anything about the fact that the migraines are always on the same side of your head? that was one of the questions i got asked frequently (along with "did you hit your head?"). when i have a migraine the pain is stationary but it doesn't always occur in the same spot.

jpitt50
New Member


Date Joined Oct 2006
Total Posts : 3
   Posted 10/31/2006 9:03 PM (GMT -6)   
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.

thornappleriver
New Member


Date Joined Nov 2006
Total Posts : 12
   Posted 11/5/2006 5:19 PM (GMT -6)   
Beth,

I hope you are still around. I am also diagnosed with vestibular migraine. I am trying topamax (stupamax) and am very leery of it, ready to ditch it the minute I have side effects. I do public speaking and can't afford to stand up there searching for words or forgetting what I was talking about.

My family doctor suggested I try topamax. I was dumped by my otoneurologist. I am waiting to get into a headache clinic with a loooong waiting list. My first appointment is November 29th.

This sounds like synchronicity, doesn't it? but if you would like to share experiences, I am here.

My symptoms are now chronic, 24/7/365, and I have hearing damage from it, so count your blessings if your vestibular migraine episodes only last a few days to two weeks. That doesn't make them any easier to bear. I had no idea it was going to get this bad.
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