New Member - Need Advice

Hi Everyone – I’m new to this website/forum – but I’m so glad I found it. I have been suffering with dizziness since May, 2009. I went to several doctors (ENTs, eye doctors, neurologists, etc.) before finally going to Mayo Clinic the end of October, 2009. No one offered any diagnosis – not even Mayo. They ran me through a battery of tests and the neurologist there told me he was really sorry, but he could only recommend that I follow-up with an ENT in 6 months). I then went to a dizzy specialist in Detroit (3 hours from my home), who finally diagnosed me with MAV (December, 2008) and began prescribing meds. After two visits with him, and unsuccessful tries with Verapamil, Valium, and Topamax, he suggested that I see a neurologist in his building. I saw him twice and during that time he prescribed Nortriptyline and the current medication I’m on – Lyrica. I’ve continued to take 12.5 mg of Valium per day through all of this, but the other meds have done nothing for me.

I finally had to go on short-term disability from work (after missing only a handful of days in my 16-year career, which was extremely tough for me) on January 11. I am the executive secretary for the president of a large company that everyone has heard of. I am at the end of my rope. I am a pretty strong person, and it took me 7 months to cry, but I finally did. Anyway, enough self-pity. I made an appointment with Dr. Hain (1.5 hrs. from my home) for March 16. I have been reading all of the posts from the people who have seen him (I didn’t realize he was such a popular doctor for MAV). I was referred to him by the dizzy doctor in Detroit. I have high hopes that he can help me get back on my feet. I’ve lost almost 20 pounds since November (even taking some of the medications that say may cause weight gain). I’m 41 years old and have been healthy my entire life. Then BAM! – one day this condition hits me. I’m like most other women I’ve read about – my symptoms are worse during PMS and the week following. My primary care physician tried to put me on Zoloft, but it gave me terrible headaches.

I don’t drive anymore because I’m afraid to – but most of the time I can ride in a car without too much discomfort (unless I have “jelly brain”, which is a condition I get sometimes where any bump or turn makes me dizzy). I am dizzy/off-balance 24/7, but am able to sleep (probably because of the Valium). Can anyone offer any advice or opinions that I can ask Dr. Hain about when I see him on March 16? The thought of being like this for years is unbelievable – especially after reading the success stories that have been posted. I totally know what all of you are going through and my thoughts and prayers go out to each and every one of you. Take care.

kiki101

Kiki,

Here’s what I did when I went to see Dr. Hain for the first time…

  • Got a copy of all test reports / scans I’d had done and brought everything along.
  • Typed a short “summary” of myself. Included info like: profession; description of the dizziness; any other symptoms/complaints I have; when the dizziness began; what (if anything) makes the dizziness worse or better; other info I think might be relevant (e.g., “family and personal history of migraine headaches”).
  • Typed a 2nd summary page of all medicines I’ve tried thus far – dosage; how long I took it; results (good, bad or nothing).

If you want to see how I did my writeup, send a PM and I can send you the text document I gave to Dr. Hain.

Hain says that when patients bring a summary of medicines, symptoms, etc., it is very useful. It also allows you to write up exactly what you want him to know, so you don’t have to explain it all verbally. (I invariably forget to mention something, or I don’t explain it very well, when I’m talking.) He’ll read over whatever you have brought him, and then he’ll talk to you (at some length) in person. He’ll also do some quick tests/examinations.

The fact you’ve already tried a few various medicines will allow Hain to more easily decide which one to start you with.

I think you’ll like Dr. Hain. Very bright; no ego. It certainly sounds like MAV is the right diagnosis, but Hain will be able to confirm it, since he knows virtually every possible cause of vertigo and can spot MAV from a mile away.

It sounds like you’re in the same boat as a lot of us here – quite certain of your diagnosis, but having to go through seemingly endless drug trials. Some people go through more than a dozen Rx’s before finding the right drug, but no case of MAV is incurable.

If you have any questions (even seemingly “odd” ones) about things, just ask Hain. And, you can always e-mail him, his colleague Dr. Cherchi, or the medical assistant whenever you want, and they’ll address any Q’s or concerns.

Sorry to hear you’re having such a tough time (MAV is the worst, isn’t it?). As anyone here will tell you, post as often as you want. Sometimes people here like to post just to say “I’m having the world’s worst day” because everyone here can relate and is supportive.

Hi Kiki,
Welcome to the forum. I am so sorry you are suffering but I am glad you found this site. It is great you are on your way to see Dr. Hain in March. I am sure he will be able to give you a solid plan of attack and accurate diagnosis.

You mentioned you gave verapamil and topamax a try. I was wondering since many of us are trying, have tried, or are considering trying these meds, if you can tell us a bit more about these trials. ie, what dose did you get up to with each med, for how long did you stay on each med, what symptoms did they help, why did you stop the med, and anything else that you want to share???

Thanks,
lisa

Hi Kiki, You may also want to think about hormone balance. I don’t know if Hain gets into that, but a lot of women begin to get hard hit with migraines when their progesterone levels go down. It is another avenue to explore. Migraine symptoms seem to ramp up during times of hormonal transitions like puberty, pregnancy, postpartum, perimenopause, and menopause. Good Luck, hope you find the way out of this MAV madness soon!

Hi KiKi,

I am new to this site as well, and I am glad that I found it too. My story is similar to yours in that I lost a lot of weight and went through what seemed like an endless line of testing and hospital stays. I finally wound up at Dr Hain’s office, but I saw his associate, Dr Cherchi - both of which are very good. I am still up in the air about all my symptoms, but at least I feel that I am on the right track with their office and this forum. Good Luck.

George,

Since I’m new to this forum, I’m hoping I’m replying correctly. It only gave me the option to “reply with quote”, so I’m hoping this will post.

Thank you for your advice. Yes, MAV is the worst – it has completely disabled me. I just called the neurologist in Detroit to let him know that after two weeks on Lyrica, I am extremely dizzy, weak and having chest pains. He is calling in another Rx for Corgard to take in addition to the Lyrica and Valium (Diazepam) I am already taking. It is a beta blocker and it says to check with my pharmacist about interactions with the Lyrica. This is all very scary for someone who has never had to take medicine for anything in my life and now I’m on my 7th medication (I think – I’ve lost count). He said that if I’m not better in a week, to call and they will move up my appointment (currently scheduled for March 15). I have to keep seeing him until I make the transition to Hain (March 16) because of my disability from work. They are sticklers for “results” of tests and have threatened to decline my disability because they want to see something that proves I have MAV. I tried to explain that there is no “test” for this, but they don’t want to hear what I have to say – they want proof. Very discouraging.

Anyway, I will keep you posted – sometimes I don’t feel well enough to sign on.

Thanks again for your advice.

Kiki

Hi Lisa,

I was on Verapamil for 2 months (started with 40 mg. and ramped up to 120 mg.). It did not help my dizziness so the doctor started me on Topamax (Topiramate). I started with 25 mg. and ramped up to 50 mg. daily. I started having heart problems (fluttering/skipping/sharp & dull pain in my chest and left arm). I also had trouble breathing. I was on it from 1/5/10 - 1/19/10 – so about 2 weeks. Just because I had those problems doesn’t mean others will. I’ve heard great things about both of those medicines from other MAV sufferers – so it just depends on the person. I have had a stress test and my heart is fine – so it’s the medication that was making me have those symptoms.

I have now been on Lyrica (100 mg.) for just over 2 weeks and it is not helping. I am extremely drowsy and I’m having slight chest pain. My doctor called in Corgard (a beta blocker) for me to start taking along with the Lyrica and Valium (10 mg.) that I am already taking daily. I will start the Corgard tomorrow, but Walgreens website says to check with the pharmacist about the interactions between these medicines. I am worried about taking so many meds, but I have to trust that the doctor knows what he is doing. This is very frustrating right now, but I am hoping to be one of the success stories soon.

You hang in there too – we are all in the same boat – trying to find the “magic” drug to end our suffering.

Take care,

Kiki

Hi Kiki!

So sorry about what you have been going through! I am glad you are on your way to see Dr. Hain.
I am wondering if it might take more than 1 med at a time for to have relief. I ask this, because I am on 3 daily migraine preventatives. I was able to get some mild relief, after giving them a fair chance with abou 4-6 weeks trial, but much better when we added in another…talk to Hain about that possibility.
Keep us posted!

Pam

Welcome, Kiki. I agree with what George suggested and think Dr. Hain may be of assistance to you, so I will make this brief. However, I did want to point out that it sounded like your trial of the medications, particularly Topamax, was much too fast in terms of the dosage. I realize you probably stopped due to the heart issues, but normally, one titrates up much slower. Going from 25 mg to 50 mg in one week is way too fast and can definitely cause all kinds of problems. It may have caused your heart problems too. You might have had them anyway, but my point is that normally one would go slower and it is very common for a patient to feel lousy in many ways for the first week or two as the body adjusts. I began Topamax at 15mg and went up 15 mg each week. I got up to 100 mg but then went back down to 75 as it was affecting me cognitively too much. I also take another medication with it. You also have to make some lifestyle changes (diet, sleep, exersise) in order to make this all work.

Good luck and keep us updated.

Best, Bonnie