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  • Looking for advice about Migraine and balance problems (please help)

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    Old 02-20-2010, 07:03 PM   #1
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    Looking for advice about Migraine and balance problems (please help)

    I am desperately looking for advice and discussion regarding others who are dealing with symptoms from migraine associated balance problems and ear pain. I am so sorry to read about others who are dealing with this. Sorry about the length of this post.
    My issue began 6 months ago when I started experiencing a sharp pain in my neck that radiated into my teeth. I though I slept weird so I didn't give it much thought. Ironically, around the same time (within the same week) I hit my head while riding in a van. The bump was not very hard and seemed like a non-event. Roughly a week later, I started having a lot of pressure/pain in both ears with a low level buzzing noise and I noticed my balance was off. I felt very unsteady when walking. I was especially unsteady when I walked and turned and felt unstable when I was in a low light situation (couldnít rely on my vision to balance me). I noticed that being in a super market or around moving people/cars (while standing) really sent my balance system crazy. This was not vertigo because the room did not spin or move as I changed positions. I also began having headaches and head pressure at the base of my skull. I went to my PCP and he treated it as an ear infection (antibiotics, Meclizince for dizziness, etc). He also had a brain MRI done. The ear infection treatment had no effect and the MRI was normal. Over the course of the next several months the problems persisted and I saw two different ENTs and a neurologist. I also had a neck MRI that was normal. The ENTs said my hearing and ears were great. One prescribed Robinul for the balance problem and the other told me I might have Meniereís. The neurologist was completely useless. As time went on, I noticed that my coordination was off and I was becoming very clumsy. My ears continued to feel like they were going to explode, my head was constantly hurting at the base of my skull that radiated into my ears, I felt pain and pressure in my neck, and I had a 24/7 feeling of being off balance. I was also feeling very foggy brained. I am a very active, hard working person (32 years old) and these symptoms are really affecting my life. I work in a profession that is very dangerous and requires me to have a high level of situational awareness and mental clarity. I feel like my life is spiraling out of control and being ripped away from me. I am having a lot of anxiety over this. I even saw a chiropractor for a while. That didnít really help. I recently found a neurotologist that has really been great. She did another head MRI and complete balance testing. The MRI was again normal (except for moderate sinus infection) and the balance test ruled out inner ear disease. She is saying this is migraine induced. I started researching it and read the book Heal Your Headache. For the first time these weird varying symptoms make a little since. I am still feeling distressed that they will never go away. I am desperate to be ďnormalĒ again. The Dr. started me on Noratryptaline about a month ago. I havenít really noticed any change in symptoms. She also started me on Topamax two days ago. I am still dosing up so I havenít really noticed anything. I am desperate to get past this. Also, over the past couple of weeks I have started consciously following the migraine diet and trying to lower other triggers in my life. Somewhat difficult with a high stress job, supporting a wife and two kids and symptoms like this that make me feel crazy and anxious. I would love to hear from others who have dealt with these same symptoms and overcame them. I want to know what medicines and techniques work and what is a waist of time. It is interesting to mention that I never suffered with headache or migraine prior to this. At the time this all started I was in the process of pursuing a new (very exciting assignment) at work, which I ended up getting. This has really put a damper on everything. Thanks

     
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    Old 02-20-2010, 07:57 PM   #2
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    Re: Looking for advice about Migraine and balance problems (please help)

    I am so sorry that you are dealing with this?
    Are you doing any VRT (vestibular rehabilitation therapy)?
    There are exercises that can help you get better.
    The neurotologist office should have a PT or OT who can give you eye exercises and balance exercises.
    I suggest posting this on the "inner ear" board.
    You will find that you are not alone.
    The symptoms are terrible but it can get better.
    Hang in there.

     
    Old 02-20-2010, 07:59 PM   #3
    alborde
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    Re: Looking for advice about Migraine and balance problems (please help)

    I wanted to add that it is very smart to start on a very low dose of Topomax and slowly work up to a therapeutic dose. Your doc knows what he/she is doing. The therapeutic dose may work wonders, once you get there. I have found that anti-convulsants are the most effect class of drugs for my dizzy/balance problems.

     
    Old 02-21-2010, 07:11 AM   #4
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    Re: Looking for advice about Migraine and balance problems (please help)

    Quote:
    Originally Posted by alborde View Post
    I wanted to add that it is very smart to start on a very low dose of Topomax and slowly work up to a therapeutic dose. Your doc knows what he/she is doing. The therapeutic dose may work wonders, once you get there. I have found that anti-convulsants are the most effect class of drugs for my dizzy/balance problems.
    Thanks for the response alborde. I am sorry to hear that you are also dealing with these problems. This has been quite the emotional and physical ride. I have not really tried any VRT, but have read about it on the internet. My neurotologist wants to get me with a different neurologist/headache specialist, so I will keep that option open. I am set to increase my does of Topomax by 25mg every week until I get to 100mg. I am encouraged to hear that it worked for you. How long did it take before you got any relief? Did you have any side effects from it? Also, thanks for the tip on putting this on the inner ear board. I will do that. Take care.

     
    Old 02-22-2010, 01:37 AM   #5
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    Re: looking for advice about migraine and balance problems (please help)

    Hi there,

    It sounds like you're on the right track and you're being looked after by a good neuro. I am surprised they put you on dual therapy so quickly however. It can take a good 3 months to realise the full potential of a medication for migraine. You may very well solve this with nortriptyline alone.

    The worst thing you can do is panic and let anxiety take over. It will just feed the migraine. Grab some valium or klonopin to help with the anxiety while you wait for the meds to kick in.

    Cheers ... Scott

    ps. don't forget to use paragraphs!

     
    Old 02-23-2010, 01:42 PM   #6
    alborde
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    Re: looking for advice about migraine and balance problems (please help)

    I think you will find others around here with MAV (migraine associated vertigo).

    The reason paragraphs are important is that some folks like me have a lot of trouble "tracking" with their eyes due to their inner ear disorder. A block of text can be hard to read.

    I like to type with lots of spaces between text blocks.

    I hope you find some friends for support and that your meds help.

     
    Old 02-24-2010, 09:28 AM   #7
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    Re: looking for advice about migraine and balance problems (please help)

    Thanks for the encouraging words guys. It is nice to hear from others out there who have been dealing with this.

    Studyin, I have read a lot of your posts and found them to be very positive. I was glad to hear from you.

    I am a little confused about the medication. I had been on the Norotriptyline (50mg) for roughly 18 days and I didn’t notice any chance in my symptoms. Should I have seen some effect in that time?

    Because it wasn’t working, my dr. started Topomax. After 4 days of that, I was having really bad side effects. She recommended I stop the Topomax and slowly dose off the Norotriptyline, to see if the side effects go away.

    Can anybody advise their experience with Topomax and or Norotriptyline? I hate to stop taking something if it might work and I am just not giving it a chance.

    I am still a little skeptical about Migraine causing my symptoms (neck pain, ear pressure, headache and balance problems), but it's the only thing that makes since. What do you think? I have been through the regiment of balance testing and inner ear disease has been ruled out.

    Thanks for the advice on the paragraphs (rookie mistake) and the kind words. I wish you both the best.

    Last edited by CTAF; 02-24-2010 at 09:33 AM.

     
    Old 02-25-2010, 07:49 AM   #8
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    Re: looking for advice about migraine and balance problems (please help)

    I do know that MAV can cause those symptoms.

    I also had terrible side effects with Topomax. I am sorry you had to go through that.

     
    Old 05-23-2010, 11:45 AM   #9
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    Re: Looking for advice about Migraine and balance problems (please help)

    Hello,

    I also have had bouts of dizziness, off balance, headaches, neck pain for several years. I saw a neurologist about a year ago and she said migraines can act this way, causing dizziness, etc... she prescribed topomax, but I never took it. I was afraid to take it because I have read all the bad reviews on it from certain people. Do you think the topomax could make the dizziness, off balance better? I am actually seeing my doctor again this week because I cannot deal with these symptoms. I also get the aura with my migraines. Can anyone say anything to make me feel better about the topomax. Do you think it will help!
    Does anyone else have these symptoms and on the drug?

     
    Old 05-25-2010, 09:06 AM   #10
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    Re: Looking for advice about Migraine and balance problems (please help)

    So sorry you are having these problems. I know it's horrible. I could only tolerate it for about 4 days because of side effects. It also made me break out in a rash and made me feel crazy. My Neurologist said 1 out of 2 people have a bad reaction to it. I can't say what your experience would be. Ironically, a few days after I stopped taking it I felt a lot better for roughly 3 days. The symptoms returned a few days later....booooo

    I am 9 months in to this and have tried several migraine meds. None have seemed to work. I am currently on 900mg of Gabapintine. I seem to be a little more functional, but my balance is still off, by neck still hurts and I still have pressure sometimes in my neck, head and ears. My pain centers in the back of my head and neck. I am afraid I don't have any good answers for you.

    I wish you the best of luck and would advise you to keep searching for answers. I would love to know if you uncover something that works for you.
    Best wishes.

     
    Old 05-27-2010, 11:16 AM   #11
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    Re: Looking for advice about Migraine and balance problems (please help)

    Well, it has been 10 weeks for me, and what a ride it has been. I am lucky that we have good healthcare and can afford doctors and meds. I have seen 3 ENT's, a neuro, PCP, Naturopath, 2 PT's and an Ear Specialist. Through multiple testing they have found that I do have a low vestibular response in my right ear. There is severe damage in that ear. The good news is, the specialist doesn't think that damage would be causing all these symptoms I have. I did read Heal your Headache, and was literally in tears. Every symptom I have was laid out in that book. I want to believe that this is MAV, hopefully something that can be cured. I am currently a walking medicine cabinet. Before I knew what was wrong with me, my anxiety was out of control. Driving has been the hardest thing for me, but with some medicine has become managable. I am currently taking a low dose of Zoloft for that. I am also on 300mg of Neurontin (Gabopentin), 75mg of Topomax and 25 mg of Nortryptalyne. I have not noticed any side effects besides being sleepy, which I can deal with. An important chapter in the book Heal your Headache is about fighting through side effects, which I strongly believe in. You never know if something will work if you don't give it a chance. I have been on these meds for only about a month, teamed with the trigger diet which has only been about 2 weeks. I have had no caffein or alcohol in 6 weeks! I have noticed little change, which is discouraging. The one negative thing I have noticed the last few days is that I am starting to get actual headaches, which I never felt before. I wonder if this is because of the increase in the Topamax? I also have noticed that on days where I sleep in more that I feel worse when I wake up. I have to start waking up when the alarm goes off! I am glad that I have had this week off, because if I had to work right now I would be completely useless.

    Don't worry everyone...you are not alone. We'll figure this out.

     
    Old 05-28-2010, 03:09 AM   #12
    Ashley9045
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    Re: Looking for advice about Migraine and balance problems (please help)

    May I ask if the Topomax has helped your dizziness. I suffer from migraines, but mine are the kind, I have aura, not a whole lot of pain, but dizziness and my doctor prescribed a low dose of Topomax to start but I am scared to take them because I have read where people have actually became dizzy from the medication. What has your experience been? Thank you.

     
    Old 05-31-2010, 05:39 PM   #13
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    Re: looking for advice about migraine and balance problems (please help)

    I am really sorry you are going through this. You are definitely not alone. I completely understand about going through a lot of doctors and not getting a whole lot of answers. I had a bad effect to the Topomax. It gave me a rash and just made me feel all around crazy. I only took it for 4 days. I have also taken Nortryptaline and Lamictal over the last 9 months The Lamictal also gave me a rash. I am currently on Gabapentine 900mg. I find myself functioning better, but my head and neck still hurts a lot and my balance and equilibrium is always off. I also practiced the cure your headache diet religiously for probably 3 months and don't think it helped. I didn't drink caffeine or alcohol for probably 4 months. My symptoms were the same. I am starting PT this week and am hopeful for some results. If the balance problem would go away, I could deal with the rest.

    I wish you the best. Please let me know if you find anything that works.

     
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