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Boslee2008 08-13-2008 04:56 PM

Which one am I?? Primary Anxiety or Primary Migraine?? MARD??
Well, I got back from Penn Balance Center. I was given a packet of information on the studies that Dr. Ruckenstein did, and they listed the criteria for how they decided if the cause for each person's dizziness was migraine, anxiety, dysautonomia, or cardiac arythmia.

Anyway, the anxiety causes were all FEAR based. They were associated with fear of situations and avoidance. "What if" I go someplace and get dizzy. That doesn't fit me because I am dizzy 24/7. I am certainly UNCOMFORTABLE no matter where the heck I am, and I DO avoid certain places like crowded places, but this is because the symptoms are worse, not because I am afraid. The migraine classifications were nausea, vomiting, headache, light sensitivity, and noise sensitivity. To me, THAT is exactly where I fit. I have the light sensitivity, nausea, headache, but I also have a TON of anxiety. However, the doctor said that he felt that this was MOSTLY anxiety because in his study, the anxiety group tended to have constant symptoms whereas the migraine group tended to have transient symptoms. But many of us know that MAV patients have 24/7 symptoms so I don't know how much faith I can put in that.

It would appear, as though I can't get a clear cut answer there, and the only place I can fit in 100%, is with the MARD diagnosis (migraine-anxiety related dizziness). However, even in THAT situation, it is key to find out which one is more predominant, the anxiety or the migraine, as the treatments are different. Worse senerio, it's a trial and error situation as you either try the predominantly-anxiety protocol, or the migraine protocol. BUT, if you are wrong, and it's the wrong treatment, you may be stuck in at least a 9 month trial and error disaster. 3 months to get on the new treatment program to see if it works. If it doesn't, probably another 2-3 months to get off the program, and another 3 months to get on the other protocol. That's approaching another year, completely wasted because you chose the wrong path. I discussed this at length with a new friend who is in the very same predictiment as mine, and also sought a second opinion at the Penn Balance Center. The feeling was the same with him. That he was mostly the anxiety group. In fact, according to the study, the migraine group was in the minority. The anxiety group was the largest group studied.

How can I be sure I am choosing the correct protocol?? If it's anxiety-predominant, any SSRI/benzo along with a low-side-effect migraine preventative like Verapamil would probably knock it right out! however, if it's migraine-predominant, that protocol might be insufficient. It might require 2 or even 3 real migraine preventatives like effexor, verapamil, and maybe an anti-convulsant, who knows. But it depends on the primary problem. The right diagnosis is the difference between 3 months to start to feel better and 6 months of continuing misery finally maybe feeling better by month 9 once the other protocol stopped and the new one is started. I've gone through 7 months of this crap already, and if I knew what i know now, I would have started aggressively on one of these 2 protocols right away. Now, instead, I'm sitting here 7 months later still trying to figure out what to do.

I have SOME evidence that there is SOME migraine involved because the topamax has helped me somewhat but I am scared to death of this stuff. I can't breathe on this crap, and a friend of mine just called from California and said that he is in the hospital with a blood clot in the leg because of the topamax. The hematologist is sure the topamax caused it. That's just great. That's all I need. Maybe a pulmenary embolism will kill me. I don't want a cure that's worse than the disease. I spoke to Hain's office, and he wants me to try Verapamil and klonopin next. I don't know why I am hanging onto the idea of an SSRI so badly but somehow, I believe it's my key. But the wrong one will mess me up. Anyway, that's my story!


studyin 08-13-2008 05:31 PM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??
Hi Rich,

It's all such a complicated mess isn't it? You know what I'd do if I were you? I'd go straight at it with Effexor XR. It's got an 80% success rate, will take out anxiety AND works against migraine. It's a good all-rounder and will probably do the job. I think anything you do to bring your anxiety down will be a significant improvement even if it's not the best path initially. You'll buy yourself some time to regroup and have a break even if it isn't the best choice med for you. On the other hand maybe it will be and you won't need multi-pharmacy and you'll walk away from all of this.

The anxiety dx they make pretty much rules it out as psychogenic. This garbage is pretty much all otogenic. I never fear going anywhere. This thing just has a life of its own.

I'm not far off considering Effexor myself. I'm in a total state today from the lexapro comedown. I'm wondering too if the 5htp has done a number on me. I stopped taking it today. Feels like PTSD kicking in again actaully. I looked back in my calendar and had two days like this in June and survived by bumping up SJW. Serotonin was the key and might be for you too.

Good luck ... Scott :cool:

violet6 08-13-2008 07:31 PM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??

I'm obviously not a dr, but I still think you are dealing with primarily migraine. I noticed the neuroto I saw also pounced on my mentioning my anxiety with the initial acute onset of dizziness and also my saying that it feels extra weird when I go outside (or places with high ceilings)..he immediately labeled me as an anxious patient and started throwing around words like agoraphobia. In reality, the inner ear/migraine problems were causing all of it...depression has been far more my issue than anxiety with this. I think I'd trust Hain on this--that's just my gut feeling, if you don't mind my sharing! :)

Hang in there & maybe explore alternatives for reducing anxiety, like biofeedback, yoga, & whatever else relaxes you. Also, what about using a low dose of an SSRI in combination with migraine meds? Prozac is a good choice in my opinion, esp. at a low dose. I took it & my personality remained intact! Also, easy to get off of. Just be sure to start low on any ssri b/c they can make you antsy at first. (A friend of mine with daily migraine takes about 10 anti-migraine meds including Topamax and she also uses 5 or 10 mg of Lexapro a day for mood purposes...maybe it doesn't have to be one or the other?).

Good luck!

Boslee2008 08-13-2008 08:27 PM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??
I agree with the both of you. The fact is, before this hit, I DID have a primary anxiety disorder that was never treated, and I was always a worrier, and a hypochondriac. However, a really bad bout of stress/anxiety finally caused a nervous breakdown which caused the migraine condition. According to this study, it doesn't matter how the dizziness starts, its where it ends up that needs to be treated. I ended up as a migrainer so I need to treat the migraine, but my anxiety is so out of control, I NEED to do something about that as well. The shame is, the topamax IS doing something, but it is definitely giving me some side-effects I can't deal with, including not being able to breathe, lower abdominal pain, nausea, fatigue, and even TOOTH pain now. What the heck is THAT all about?? Anyway, an SSRI is definitely in my future, it's just a matter of which one. I heard prozac is excellent for not messing with your personality too badly, and the withdrawl is easy, but the side-effects are downright gnarly! Lexapro works pretty quickly, and has the least amount of side-effects, but it's the most potent SSRI out there. Effexor is the most difficult to get onto, but the most likely to work for migraneous vertigo. I'm exhausted thinking about all the options. I don't want to get on the wrong med, because it takes 6-8 weeks to get an effect from an SSRI, and with my sensitivity, it will take double or triple that amount of time to get up to a therapuetic dosage so it's a lot of time for trial and error. I just can't go through this that long. I really wish I knew which drug would be the right one. Effexor at 37.5mg was tough. Headache, nausea, dizziness, agitation, appetite loss, insomnia,.....and that was just one pill!!!! I would hope that taking it slower might make it easier to get onto but GOD HELP ME if it doesn't work, and I have to get off it, the withdrawl would be the withdrawl from hell. Hain's office also said to try Verapamil and Klonopin but I really hate to get on multiple meds at once, and not know what is causing the help or the hurt.


tbissell 08-14-2008 03:29 AM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??
how does topamax help with shaky vision does it take it away for you? even when you take it do you get a secound of relief with it? if so TAKE IT!!! wish id found something that would even take this crap away for a secound 3 and half years long time with out even a secound of relief.

Howie2 08-14-2008 05:21 AM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??

Go see Dr Newman

He has a support group for MAV patients every month. He has guest speakers like Biofeedback therapist, Accupuncturist, Pyschologist that specialize in pain mgt.

He also will answer any question you have on email same day...

Very supportive....

Takes a few months to get your intital appt as he spends a full 3 hours for you

violet6 08-14-2008 07:04 AM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??

Three hours is amazing! What a wonderful doctor. He sounds like the perfect person to see about this stuff. And I do think once you can trust the doctor you can move forward better in your treatment.

In your situation, I'd try the verapamil and then just use klonopin for anxiety. I have some klonopin I've never used, but I like to carry it around with me! :) I would also take the smallest dose of either prozac or lexapro just for the l-t effect on reducing anxiety. I'm not sure which I would do first...maybe the one that would work the fastest or whichever one the doc said would be best to start first. (Prozac did not have severe side effects for me at all; perhaps a very low dose would have even fewer).

Why is it easier for me to think about your course of action than my own? :) I need to start taking my nori, but I wish they would recommend prozac to me, as I am comfortable with it and imagine it would at least help my mood a bit; also it's quite safe during pregnancy.

Anyway, that must be rough having had the anxiety issue to begin with and then to get hit with this!

Keep us posted & good luck!


violet6 08-14-2008 07:06 AM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??
Sorry Rich-- I accidentally called you Rick below!


pamg6 08-14-2008 07:53 AM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??

Take your Nori girl!!!! You will be fine, and perhaps even better tomorrow!!!!!;)

Pam 3

cknmbbl 08-14-2008 07:55 AM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??
Hey Rich,
Are you saying that being under a lot stress or anxiety for a period of time can lead to MAV? Can it lead to migraine syndrome which is the same as MAV, just 24/7, right?

Wowwwweeee 08-14-2008 09:56 AM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??
Rich and all,

Anxiety definitely plays a part in adding to or sometimes even causing symptoms. I am definite proof of that!

In my case however, initially I displayed very real symptoms of BPPV, and to this day, I will get the "spins" wtih an inner ear infection. Anxiety did not bring these symptoms on.

I read that most people with imbalance/disequlibrium/inner ear conditions usually develop some sort of anxiety disorder along with their "head symptoms" as a reaction to feeling so "off" all the time. I am also sure there is some physical component to developing an anxiety disorder along with this.

My point being is that if a person goes into this experience without a prior history of anxiety or panic, but then develops these symptoms in direct correlation to how they physically feel, I would treat the migraine first.

For me, I have had panic and anxiety BEFORE my head symptoms, however, the "new" anxiety that I have NOW is in direct correlation to my condition.

I have had two significant stretches where my head symptoms were not "bothersome". During these periods, I did almost everything that I wanted to, that I usually did not do because either I was afraid of my symptoms increasing or I was too limited by them. During these two times, any hesitation on my part was due to the lingering worries of bringing on the dizziness - no other fear. For that lingering fear to subside, I just kept doing the things that previously would make me nervous when I was having symptoms.

When I didn't have symptoms, I didn't have that anxiety.

For me, I would treat the migraine formally. My "gut" tells me that if I didn't have my head symptoms, I would probably still be a worrier, but I would not have the anxieties that I currently deal with (due to how I physically feel because of my issues).

For the anxiety aspect of things, you could seek out some cognitive therapy to find ways to react differently to your physical symptoms, and find something that you relate to to alleviate your stress (ie., journaling, self-help books, support group, hobby).

My guess is that even if you have anxiety/worry issues, you would STILL have them even after being treated for migraine. But they probably would be less, or of a different nature, if you weren't dealing with your head stuff, because you wouldn't have the "head stuff anxiety" on top of your typical worries.

Just my two cents. My suggestion - really, what does your "gut" tell you?

violet6 08-14-2008 11:43 AM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??

Thank you for the encouragement! :) I remember your friend's advice: take it with confidence. I know I need to! I'll post back about it soon...


lookng4answrs 08-14-2008 01:40 PM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??

It sounds to me like you are "primary anxiety". Is that an official diagnosis that this doctor could give? Is he saying that anxiety causes the migraine syndrome in some people? I know that for me I've always suffered from anxiety and agoraphobia, but it has come and gone throughout my life. There are periods of time where I was fine. I had two major health issues back to back and then this came on right after that. Plus major upheaval in my life for several years... you get the picture. I wonder if that's a diagnosis that would fit me, and if so, what the heck do I do about it.


Boslee2008 08-14-2008 04:27 PM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??
Thanks to everyone for the replies. I don't know if there IS an official diagnosis. The consensous is that I have BOTH a major anxiety disorder AND migraine disorder. Both are feeding each other, so both need to be treated. It's felt that the anxiety disorder triggered the migraine disorder. But even though that's the case, the migraine still now needs to be treated, which it is with verapamil and topamax. The anxiety is going to be tried on lexapro, and maybe the addition of klonopin if needed. we're going to stick with just the SSRI at first as it's less addictive than klonopin. The SSRI might actually have a direct effect on the dizziness as well the my visual problems as well. We'll have to see. They say that only the Effexor works on bringing down the sensory amplification seen in migraine but I'm willing to try the lexapro first, and if that doesn't work, try the effexor. I just don't want to go right for the worst SSRI/SNRI of them all off the bat. All I can do is try. It's better than doing semi-nothing. The topamax is helping about 20-30% which is not NEARLY enough. The 20-30% is only a stablizing effect on my crappy symptoms, not an improvement. I need some improvements now. Hopefully between the SSRI and verapamil, soemthing will happen.


studyin 08-14-2008 05:17 PM

Re: Which one am I?? Primary Anxiety or Primary Migraine?? MARD??
Rich when you try the lex, start on a very low dose and work your way up at a snail's pace. I went too fast and blew the lid right off the pot. I'd begin on 1/4 and sit there for about 2 weeks then bump it up to 1/3 and sit there for another week or longer and then 1/2 etc. I jumped from 1/4 to 1/2 after 6 days. On day 7 on 1/2 a tab the rockets were launched and the dance party started LOL.

Scott :cool:

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