I just received my copy of my consultation and I am going to give you the summary from Dr. Baloh:
In brief, this 45-year-old woman with a long history of migraine headaches who has had chronic dizziness dating back to March 2011. Her description of dizziness is typical of migraine-associated dizziness which may have been triggered by hormonal changes associated with menopause. Unfortunately, there are no proven treatments for migraine associated dizziness and the patient has been tried on several migraine prophylactic medications without much benefit. However, she has had significant side effects, which have interfered with the therapeutic trials. She is receiving some benefit from alprazolam on an as needed basis and we discussed the common triggers including stress and irregular sleep and eating patterns, and I encouraged her to begin a regular exercise program which will help with stress and sleep. We also discussed the vicious cycle and nature of her symptoms, and I encouraged her to gradually return to driving on local streets. There is a clear genetic component for migraine and migraine associated dizziness, and there is a family history of migraine in the patient’s mother and sister. If the symptoms persist, one might consider a trial of another ssri or a tricyclic, although patient is hesitant to try another chronic medication. She has undergone extensive diagnostic studies and as noted above inner ear function testing is completely normal. So we have effectively ruled out a chronic inner ear disorder. I do not think that any neurologic or otologic studies are indicated unless she should develop some new signs or symptoms.
That is the full summary. He told me I’ve tried everything he would try, so I don’t get why he said one might consider another ssri or tricyclic. He definitely did not mention that to me in the consult. I still can’t believe he wrote in the summary that I should drive right now with the way I feel. I just wanted to let everyone here know what he had to say about my case.
Brain lapse? Wow - well at least you can take that back to your regular doc and hopefully have him/her let you try out some of the ssri’s or tricyclics that Baloh didn’t offer…
I have been on brand name effexor for about a week now and have not had any bad side effects so far. When I took the generic, the se’s were horrendous.
Really? I wonder if my half-interested neurologist would let me try the brand name. I tried the generic twice, but the last time, in addition to ramping up the dizzies (which I expected) I was having problems with shortness of breath. (That feeling where you feel like you just can’t quite get enough air… Happened right after I took 1/4 of a tiny pill and then happened again around about when that pill was wearing off and it was time to take the next one! Sheesh.) Anyhow, I’m really glad to hear you’re tolerating it well. Hopefully it’ll be just what you need!
It also makes me sad that a doctor that diagnosed you with MAV says there is nothing he can do to help. I’m sure there are many people just like you and us that are waiting to see him for this. It makes me sad that those people will walk out of there feeling like there is no hope and that they are forced to live like this forever.
By the time I saw Dr Fife, I had suffered from this for almost a year and had seen countless doctors, had countless tests and felt depressed, frustrated and defeated. I knew he would be my last bit of hope because my neurologist told me he specialized in dizziness. I had never even heard of MAV. Had I gone to him and he gave me a dx than told me he had nothing to treat me with, I would have jumped off the nearest bridge. So my heart goes out to you. Thank God, you have this forum and an open doctor.
Because of doctors like Baloh, who I consider to me irresponsible, we need to all try and get the word out about MAV and this forum. I wish I had this forum when I was feeling so alone and confused. This forum has saved me!
My experience with doctors is that at first they give you lots of hope and then as time goes on and each treatment fails, they just say they are sorry and shrug their shoulders.
I bet if you had gone to Dr. Baloh with a clean slate (meaning you told him you never were treated), he would have had a very different attitude. Every doctor wants to help us, but I suppose in these days of defensive medicine (where patients are constantly sueing docs in the US), many don’t paint as rosy as a picture as we would like. I kinda wish they would not be so honest as nowadays I leave my doc appoointments even more despondent than when I go in to them.
All we can do is fight the fight… and I am so glad to have this forum.
I agree with rockergrl that doctors will try at first but soon give up. I’m betting Dr. Baloh just doesn’t want patients that are going to be time-consuming because they may need to be tried on multiple medications and have already had lack of success or too many side effects with past trials. Just a guess.
So why doesn’t he just say, here are some things you can try, you might try this or that medication, in this order, with these dosages, and then let your PCP supervise the trial(s) of medication and other measures if he doesn’t have time to do it himself. It sounds like he left you feeling rather hopeless, and that’s terrible. He should have at least had a full discussion with you and given you something to try.
I do remember my (past) otoneurologist saying the surprising words about migraine “we use the medications to treat the headache, not the dizziness.” But he did not even think that my dizziness was caused by migraine (though he didn’t have any other theory for me either–did not give me any diagnosis even though I have a clear history of migraine). I think that guy studied under Baloh!
Also, it would be a miracle if what a doctor told you during a visit matched what they put in their report! It is astounding how different, even contradictory those accounts can be. They write the report for the referring doctor, and/or to cover themselves, and/or for other reasons… I can’t tell you how many surprises I’ve seen in my reports, even about important test results that were never conveyed to me. The doctor will say “I told the patient X” or “the patient said Y” or “the patient demanded Z” when no such thing was ever said!! They twist your symptoms around and completely misrepresent them to fit their own picture that they’ve decided on, never mind about the actual facts. Not all your symptoms, and some docs are better than others, but it amazes me how MUCH they get wrong in their reports–which I think can severely affect your treatment by other doctors and how other doctors see you. It’s so frustrating.
Really I think that most migraineurs, after consulting a neurologist, will have to rely on their own research and a PCP who’s willing to go the distance with you in trials. Specialists like to have a consult, do initial testing, write a report (accurate or not), and send you on your way. They do not want to follow you long-term.
Good luck with the Effexor; hope it will work for you!
Thanks for posting Baloh’s report. Strange that he left you feeling there weren’t any other options with meds though mentioned another SSRI in the report.
I know how Baloh thinks – he relies on the evidence from clinical trials and some expert opinion (hence Celexa). He noted you had tried several meds with no success because of side effects so probably had nothing more to draw on apart from another SSRI because at the end of the day, for some of us, migraine treatment is like trying to shoot a target from 10 km hoping for a direct hit. Trialling another SSRI is sound advice. There are many of them and they all fit each person differently. One can jack someone right up while another is calming and can knock out MAV quite a bit. I’ve seen people recover on Zoloft, Celexa, Prozac, Luvox etc … and then there’s the SNRIs Effexor and Cymbalta of course.
I’ve had the experience of a generic making me feel worse too and can only conclude it’s the different exipients (packing agents) used in the manufacturing that causes us the problems. Perhaps poorer quality.
What SSRI/SNRIs have you tried so far?
The good news is that Baloh has nailed the MAV. Now you’ll have to use your own research and work with your GP (PCP) to find a med or med combo. I did like reading how Baloh emphasised sleep again. That’s something that I do not keep consistent enough and it was a good reminder to get my act together.
The meds I have trialed so far are the generic of Effexor for 7 weeks (side effects were horrible ~ extreme nausea, worsening depression, horrible nightmares), Topiramate for about 2 months (had a hacking cough day & night, couldn’t sleep, couldn’t concentrate or communicate very well), Citalopram for for almost 3 months (no bad side effects, just didn’t do anything for me), Propanolol (took away migraines after a few days, but caused my extremities to turn blue).
I am currently on 37.5 of brand name Effexor and seem to be doing ok so far. I haven’t noticed any bad side effects, no change in migraine or dizziness yet either. I have only been on it for about 1 1/2 weeks.
I have trouble sleeping at night, wake up around 3 or 4 am and can’t get back to sleep for a few hours. I think it’s the hormone thing for me, so not much I can do about that.
So frustrating that a doc known to be an expert in recognizing MAV would essentially give up on treating you any further when, by comparison to many others, you really haven’t tried all that much. I’ve almost come to expect this from your “average” doctor but have held out on seeing one of the touted experts on MAV simply because I can’t afford it. I guess it’s nice to hear from someone who supposedly knows more than the average doctor that this is your diagnosis, but if he’s ready to hand you off that quickly, what good is he? Sorry for the rant - I’ve just faced a lot of similarly apathetic doctors and it gets my goat. Please be assured that manyh others on here have gone through many many more trials than you have before finding the right fit… or even something that helps a little.
Wow - well at least you can take that back to your regular doc and hopefully have him/her let you try out some of the ssri’s or tricyclics that Baloh didn’t offer…
that a doctor that diagnosed you with MAV says there is nothing he can do to help. I’m sure there are many people just like you and us that are waiting to see him for this. It makes me sad that those people will walk out of there feeling like there is no hope and that they are forced to live like this forever.