My appt. with Dr. Baloh at UCLA yesterday

Hi everyone,

I did the all of the eng testing in the morning for about 1 1/2 hours. The tests were draining and seemed to go on for longer than that.

I saw Dr. Baloh in the afternoon and he said all of my vestibular testing came out perfectly. He went over everything else and did confirm that I do have MAV. He does think it could have been triggered by menopause, but that I have always had migraine because of the headaches I had in the past (which I was always told were sinus headaches). I felt better until he said he really has nothing else to offer me at this time, except doing some lifestyle changes. I already do most of the ones he wanted me to do (meditation, exercise,eating regular meals, stress reduction). He ruled out taking medications at this time because I have been on all of the ones in all different categories that he would have tried. Driving is the one thing that I have been unable to do since last August because of extreme dizziness, and he told me to go ahead and start driving because I am giving in to the dizziness by not driving. I tried telling him that I am extremely dizzy even as a passenger and even when I load up on xanax and he still said to go ahead and do it and take a little xanax if I need to. He also said he is almost positive I suffer from Raynaud’s disease (which is why Propanolol caused my fingers, toes and lips to turn blue). It is also a disorder related to migraine.

I have appts. set up with an ENT next month and Dr. Baloh said there was no need to go to that appt. because of the extensive vestibular testing at UCLA showed nothing wrong. I was also told to stop the vestibular rehabiliation I was doing, because it won’t help.

Todd and I talked last night about my appt. and he was very helpful and kind. Thank you Todd for your kind words and for listening :slight_smile:

I’m just not sure where to go from here. My vestibular therapist suggested possibly doing some bio-identical hormones (I can’t take regular hormones because I had breast cancer at 28). I am at a loss right now :frowning:

I cried myself to sleep and woke up crying this morning when I was aware of what occurred yesterday.

Donna

This is just my opinion but I was a little dubious when I heard u were going to see him. I have read his book and his interview on here and I do not believe he has much of an understanding of MAV. He seems to just think it should be handled exactly like classical migraine. He is also wrong about VRT. It is important in patient with visual vertigo issues and positional vertigo but only WHEN the patient has been stablised on meds. I think he should just stick to treating people with episodic classical migraine.

Just to second what has already been said, the suggestion that you shouldn’t try any other drugs is frankly preposterous to me. Some people on here have success with two meds at once, some even 3. You need a doc who will go the distance with u and be prepared to keep trying different things. I’m not surprised you felt sad, he’d written you off which is silly. There are countless medications and they are now introducing botox for migraine in the UK on the NHS as it has proved to completely wipe out symptoms in 25% of cases.

The one good piece of advice it seems to me is not to bother with the ENT. Unless they happen to be the likes of Steve Rauch who really know about MAV. I do think however that you need a different MAV specialist who will work a lot harder to help you. The message he gave you left you helpless and there is no reason at all to feel that way.

Hx

Donna, how many medications have you tried? My oto-neurologist told me he has used about 15 or 16 medications for migraine and that we would just start going through all of them or even different combos of them until we found something that made a difference. I believe that you would have had to go through quite a few different medications before he would just give up trying. That just doesn’t sound right to me.

If it is menopause that brought this on for you, doing something with bio-identicals might be a good idea. A lot of women have hormonal migraine issues, so if you could balance out the hormonal changes you went through during menopause you might get some improvement.

Donna - I’m so sorry you’re feeling so down!! I would think SOME med trial would be in order, so I don’t get that either.

You said you’ve done “MOST” of the lifestyle changes he suggested - that means there’s room for improvement. I don’t think you should take that lightly. Sometimes the littlest things can make the biggest differences, especially if one of those turns out to be a MAJOR trigger for you. Most of us DON’T realize what our triggers are. If we were handed a list of our personal triggers (or trigger, if there’s only one), don’t you think we’d all have controlled those that we could by now?

It’s a mysterious business, this trigger stuff. :?

I would just like to add that if you think menopause had anything to do with your MAV, you might not want to go introducing any hormones into the mix. Bioidentical or otherwise, there will not be a steady stream of anything going into you, and hormone swings are NOT good for a sensitized migraine brain. I know perimenopause was the “Big Bang” that started all this for me - the hormone swings did strange stuff to my boobies (I cancelled a mammogram because I was so swollen) and a couple weeks later, when that sky high level of estrogen plummeted and my chest “deflated,” I had my first dizzy spell and tunnel vision aura! (It’s funny now, but it sure wasn’t at the time!!)

:shock:

I’m wary of Xanax because I’ve seen people who struggle with addicition. However, when people use it for the right reasons, they generally don’t try to get more of it than they need, and they use it appropriately, and avoid the problems that addiction brings. Maybe you should try driving short trips. Without tunnel vision, you’re probably not as dangerous behind the wheel as I could have been!

Anyway, I hope you’ll give the lifestyle stuff a chance. It CAN help, and there’s no side effects. Take care and good luck.

Hello,

I was interested in seeing a different doctor and maybe even Dr. Baloh. I’m sad for you. I think I will cross him off my list.
One of the doctors I saw, told me “Dont give Up” I was happy to hear that. This is a setback no doubt. But dont give up.
Something has to work. Have you had a thyroid test done. A detailed one other than the TSH. A naturopath doctor told me
that for the most part those always come back normal, and that the detailed ones that look at cortisol, and testosterone and
the others individually are more accurate. I was thinking to do it. I had an appt a few times but cancelled. Just sick of trying
sometimes.

Again, Im sorry your disappointed and this didn’t go as well as you hoped.

Kayera.

Thanks everyone for all of the replies and ideas for me.

I just got off the phone with my primary care physician and she was not happy with the way things went for me yesterday. She and I have been working very hard for months to figure this thing out. While she is happy that he confirmed my diagnosis, she was upset that he really had nothing more to offer me.

The next step for me is going to be brand name Effexor starting at a low dose (tried the generic and my body just couldn’t handle it at all). My primary is going to prescribe it for me and I will probably start in the by next week. I am also going to have some auto-immune blood panels done because Dr. Baloh thinks I have Raynaud’s and I may also have some other auto-immune issues or disorders going on. My primary is also going to order those tests and I will get them done next week. I also told her that Dr. Baloh said I need to start driving even though I am dizzy every time I am in the car, and she was concerned about me trying this, but said he is the expert.

Donna,
Don’t despair. It is easy to put your hopes into some “great doctor” who knows the answers. Truth is…there are no real answers…As one of my doctors put it when it comes to this stuff, it went from “We don’t know shit”…to “We know shit”…lol…it’s not really funny, but sometimes you just got to laugh anyway…
I know Todd went to Dr. Baloh and he supposedly said Celexa was the miracle…for Dr. Hain, it’s Effexor…for Dr. Silver, it’s Lyrica…every doc has their favorite and I don’t know if it’s from results, or cute pharm reps in short skirts…in any case, you cannot give up.
I have done extensive testing for hormones etc/thyroid etc/autoimmune/viral etc…literally every test out there! I lucked into my combo that works for me…keep plugging along…keep a diary…I would rather see you on longer acting benzos like Valium or Klonopin than xanax…if you can take it. I couldn’t take Effexor, but have managed to take Cymbalta. I didn’t have luck with Lexapro, Effexor, Propranolol, amitriptyline and Remeron…but I have been good with Cymbalta and small dose of Klonpin and phenergan…I refuse to give up and you shouldn’t either. Don’t put so much faith in one doctor…I also find psychiatrists much more empathetic and very knowledgeable with these meds. Having migraine also hits up your depression/anxiety tendencies, which are considered under the care of the psyche docs…neuros are too removed for my liking…I like to be treated like a person not a disorder…
best to you…
Kelley

Kelley, I have to say, your a breath of fresh air. Your really put a funny spin on it. Good to keep laughing, thanks for that. Kayera.

Donna…you are going to get better. just remember that your body (and brain) will not stay this way and it is not intended to stay this way. OK???

You just need to get that damn thing re-wired!!!

The problem with Baloh was: If the Celexa did not work and you did not fit into the “success box”, he did not want to hear or deal with it…probably because it hurts his statistics.

There is a combo of meds out there , diet changes, better sleeping , etc that ARE going to make you better.

I am saying this to you because I believe the same thing for me…I will get better , who knows when though???

And to echo what Kelley said…when I was in college at Washington State (Go Cougs!) and taking a statistics class, we learned primarily two main categories:

  1. WAG - This is a “Wild Ass Guess”

  2. SWAG - We were smarter…because we game “Scientific Wild Ass Guesses”.

I still use these words with some of the patients we see in heart and renal failure to try and put a little funnier spin on their condition.

Your friend from the NW, Todd :mrgreen:

— Begin quote from “Go Gonzaga”

The problem with Baloh was: If the Celexa did not work and you did not fit into the “success box”, he did not want to hear or deal with it…probably because it hurts his statistics.

— End quote

Todd – didn’t know this happened. Was that really the attitude you got? No alternative meds suggested?

Ditto what Kayera said.

Kelley, you add such helpful info AND humor. Powerful combination.

Everyone here is so helpful and concerned - this is the most supportive support group around.

:smiley:

Hi Donna,
I have to say I am not surprised at Dr. Baloh as I have heard this from a few docs that consider themselves to know a lot about MAV. I too have tried a number of drugs and was told that because I didn’t respond that there was not much more they could offer me. It seems that the less docs know about MAV, them more they are willing to keep trialling meds. I feel so conflicted with all this information to be honest. One doc told me that 80 percent of folks with MAV get better with the first drug, and 80 percent that did not respond to the first get better with the second drug. He then went on to say that those who have not responded do not get better because either it is not MAV or there is something else going on not allowing the drugs to work on the MAV part. Another office visit I left in tears ;( Hang in there. I have found that even if the docs don’t believe in me, I have to believe that somehow I will get better on my own with time and persistence.
Keep the faith,
Christine

You are all so great :slight_smile: Thanks for being there for me right now. I have been so frustrated and upset since the appointment and have been indulging in too much vino.

Kelley,

I am going to talk to my primary doctor about a longer acting benzo and see what she thinks to go along with the brand name Effexor. Your knowledge about the drugs is greatly appreciated :slight_smile:

Todd,

Thank you for being there for me also. I am sure you know how I feel right now. I may give you a call again soon to talk if you don’t mind.

Christine,

I feel awful for you. I guess we are kind of in the same boat :frowning: I am going to try another med (brand Effexor) even though Dr. Baloh didn’t suggest anything new for me. You hang in there too, ok.

Donna

— Begin quote from “rockergrl”

One doc told me that 80 percent of folks with MAV get better with the first drug, and 80 percent that did not respond to the first get better with the second drug. He then went on to say that those who have not responded do not get better because either it is not MAV or there is something else going on not allowing the drugs to work on the MAV part.

— End quote

I don’t buy that for a second. The docs I am familiar with that are up-to-date on MAV seem to agree that there are three classes of drugs to trial: anti-depressants, anti-convulsants, and beta-blockers. Even ignoring the fact that people react to different drugs within the different classes differently, a person would at the MINIMUM, need to take at least one drug from each of the 3 classes before you could even begin to say they weren’t responding. And that ignores new reserach into treatments like botox.

Heck, my doc (migraine expert at the University of Michigan) discussed 3 drugs (again, one from each class) he wanted me to try on day 1 and even spelled out the plan we were going to go down to try them all, assuming one didn’t take hold right away. If there was some research that showed that 96% of MAV patients either repond to the first 2 drugs or don’t get better at all, then why was he talking about all 3 drugs on day 1? My guy is big on research and studies–he would be aware of something like that I think.

I can’t speak for the doctors, and maybe some of them have run into multiple cases they can’t find the right combos for. But I do know that with my doc we didn’t give up and after 8 months and 3 medications we hit on one (or possibly a combo–won’t know until I ween off the Nori) that is now working for me. I can’t imagine why a doc would give up with seemingly so many migraine medicines available to try.

Folks:

I have a general practioner that is willing to “work with me” on trying medications.
I am currently on venlafaxine (only 2 weeks so far).

I see a specialist (otoneurologist) in 5 weeks…but if the specialist gives me the “there’s not much we can do” idea, I feel
confident that my GP will work with me and try 3-4 different drugs over the next year or two.

Does anybody else have this fall back plan that I feel that I have?

We are all so different, and the drugs are all so different, that the number of different combinations of drugs and doses and triggers and lifestyle changes is staggering. If Todd used his statistical Wild Ass Guesses, it would be into the Gazillions!!!

:shock:

So for doctors to give up so easily borders on malpractice. One of the most important things doctors can give to patients is hope - not for a cure, because with migraine we know that’s not possible.

But we deserve to be informed about different options with meds for migraine, including polypharmacy (using combinations of drugs if single medication trials have all failed) AND we deserve info on lifestyle modifications (they should be handing out diet info, along with sleep, mealtime, excercise, and evidence based lighting/computer screen suggestions).

By the way, just to inject a little good news here - I recently had a pair of prescription glasses tinted with FL-41, the rose-colored tint that has been studied at the Moran Eye Center at the University of Utah. I had been having almost daily headaches - not severe ones - and those are mostly gone now. [I had one severe headache recently, but I believe that was due to taking Vicodin for 3 days post-op (minor ortho surgery) and no rose-colored glasses were going to stop THAT headache.] I learned about FL-41 here, and I’m so grateful!!

But it’s stuff like this that the docs should be telling us about. We can’t take steps to help ourselves if we don’t even realize what our triggers might be and what we can do about them.

@Scott…he never technically said “Celexa is the only drug that will work for you”…however, you get a strong impression from him that if that med does not work, try changing your lifestyle and/or diet.

At no time did he say…“We are going to start with Celexa and keep working our way through this until we find an answer!” Thus, my disappointment after a 3 hour flight and $500 later.

@Donna…ask away. You may not realize it, but we learn from one another, even in your misery. I look at this as one big ass puzzle that I need to figure out on my own (or with the help of this caring group)!!!

Peace out 8)

Todd

Donna,

I greatly feel for you. We put so much hope into these appt, and these supposed gurus, and when that gets shattered, it is hard to reboot and move on. I have been there, and it is so very hard. That being said, thank goodness, you aren’t one of his pts without a support system (mvertigo) who doesn’t know about MAV. That person may never try another drug again and be sick for years and years. but, you, thank goodness, know better. What he said is ridiculous and so unkind as well. but, mostly, it’s not true. people sometimes have to go through MANY trials until finding the correct one. this is true of other illness that involve neurochemicals. I know when I worked as a psychologist, patients had to go through a plethora of meds before finding the right one to combat, depression, for example. It would be completely wrong to say we tried celexa, you will never be happy again, end of trialing meds. sorry i am rambling. he just got me so worked up, and I am so sorry you had to endure that. I am so happy you are rebooting and trying again. Now, I have to internalize everything I just wrote. It’s so hard to be hopeful for oneself. I also tried celexa and got to 60mg with zero success, but my neuro promises me that there are many more options. I’ve tried so many meds already, and he promises there are more. please hang in, and best of luck on the effexor. Just take the appt for the good - he dx you with MAV, ruled out anything else, and now time to try another med. and, lastly, the fact that you admit that you aren’t safe driving, is brave and SMART of you. Telling a person that doesn’t feel well enough to drive to do so and put you and people at risk, is plain stupid! ok I’m done :slight_smile:

Lisa

If I’m not wrong, isn’t it Dr. Baloh who says that if one can get a 50% reduction in symptoms, then he considers that a success story? I think of that as a sucks-more story…not good enough!! For those of us who had Normal" lives before all this started, I refuse to believe we can’t get the brain back to some semblance of normal. Our bodies are made to be working…not this disfunctioning b.s. 24/7. It just doesn’t seem right!!

Kelley