Gotta jump in here! Well said, Scott and Victoria!! And, thanks Todd for giving up the benefit of your consultation with Dr. Balohā¦ a sane voice among other brilliant specialists out in the medical treatment wilderness. This is all so fascinating and really hits more my continuing experience. I was diagnosed with MM last year but after getting revised diagnosis of migraine variant, I would have to say that the continuing ups/downs/low levels of migraine activity have been with me for many many years but didnāt manifest themselves into the dizziness until 3 years ago. āLocked inā is a great description. Hey, Toddā¦you can definitely improve and weāll be pulling for you. Iām in northern California, and Iām glad to know that Baloh is fairly close by if I would like to consult with him myself. Keep up the great input, everybody. Iām sure we can all use this reminder from time to time that migraine is a genetic pervasive condition. [Scott- CFS is a chronic immune dysfunction that goes haywire and affects the hypothalamus/pituitary/adrenals among other systems. Interestingly enough however, Fibromyalgia consists of a similar dynamic to migraine where the nervous system is overly sensitized to pain and goes into overdrive most of the time.]
Gail
Scott, I love āmigraine associated I feel like shitā (MAIFLS) :lol:
The neurotologist who diagnosed me called it āmigraine associated dizziness,ā but he prefers not to treat it himself so he had me go to a neurologist for meds, and he called it āmigraine variantā¦ā
Migraine is the common denominator. IT is the beast! :evil:
Anyway, Todd, I wanted to say that it took right around 3 months for Topamax to put a stop to the daily wobbliness for me. All severe episodes of dizziness, as well as tunnel vision auras, have completely stopped. I have some occasional mild episodes - I can live, and walk around safely, and drive safely, with that! And recently, I had a few episodes of dizziness that were verging toward moderate, but that was when I was experimenting with reducing my dose - I went down too far. Have since gone back up some.
That 3 month time frame seems to be the magic number. Seems like a long time to wait, but from my experience, these treatments CAN work if you hang in there and donāt have too much trouble with side effects.
ā Begin quote from āmaryaliceā
Anyway, Todd, I wanted to say that it took right around 3 months for Topamax to put a stop to the daily wobbliness for me.
ā End quote
And the kid has been on propranolol for about three months, too. Heās doing really well now, as I mentioned on a different thread. We started seeing definite improvement after, oh, maybe six weeks? Iām not sure. But it wasnāt enough improvement to allow him to go to school or do normal teenager stuff. It seems like, about two weeks ago, he definitely crossed some sort of invisible line, and is now functioning pretty well.
The three months felt like forever for him. But itās working.
Mamabear
Oh, and on the what-to-call-it question, the kidās neurologist calls it āchronic vertiginous migraine.ā That puts the emphasis on the migraine ā thatās what it IS. Itās migraine. The āvertiginousā tells you that it has vertigo with it. But the primary thing isnāt the vertigo. Itās the migraine.
Mamabear
Hi All,
The neurologist who diagnosed me in early 2008 simple called it migraine. I agree with everyone that what we have is migraine with various symptoms, including vertigo sometimes. I think what landed many of us here on this forum was overwhelming vertigo without an understanding of the underlying cause. However, we now know vertigo is just one devastating symptom of migraine. For me, vertigo was the worst symptom in the beginning, but it provides only an occasional annoyance now. It seems once the vertigo was under control, I became much more aware of the many other symptoms.
So, now having visited with Todd before his appointment and hearing how things went, Iām wondering whether it would be beneficial for me to see Baloh. Would it be a waste of time since Iām already confident with my diagnosis? Iāve been navigating through my own treatment plan with the help of a GP for a couple of years now. Iāve done a ton of research and know more about migraine than most of the doctors Iāve seen over the years, with the exception of the two neurologists Iāve seen. I truly wish the first neurologist who diagnosed me were still in my area. He was by far the most knowledgeable and caring.
Anyway, my insurance will most likely cover a visit, and possibly even travel expenses, to Baloh, but will he really have anything more to offer me than what I already know from my own research and from the information shared on the site about his philosophy and approach to treating migraine? Does anyone have any advice to offer?
Thanks, fellow migraineurs! (Sorry about my rambling - Iām having a very brain-foggy day. )
Marci
Thanks for warm wishes among my peers. This is quite a nice group and my offer still stands:
When I recover from this, we are going to have a New York steak and margarita fest for all to attendā¦funding by yours truly
Dr. Baloh was confident, you all are confident, I am cautiously optimistic. I have been ālockedā in for so long, it is hard to picture anything else now. That being said, I have re-dedicated myself to getting better, which includes diet, exercise, and medication.
On that noteā¦I will try and answer a few questions posed out there:
-
Regarding exercise, he did not have an answer why it makes me feel rotten and others will barely notice it. However, he emphasized the importance of doing some kind of physicial activity on a daily basis and, essentially, muscling through it.
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Regarding whether or not it would be worth seeing him, I would say āyesā, from the standpoint that he gives you access to his email and acts as a consultant for you, while you are being medically managed in your hometown. Very easy to navigate around UCLAās campus and the weather was better than our crap :lol:
What really struck a cord with me was his statement (when I asked him how confident was he that this was causing my ailments)ā¦āNothing else makes sense. The symptoms you describe would not be caused by an inner ear disorder, or you would have compensated by nowā¦periodā
Hope that helps and thanks for the reassurance that I might see the light one day. (no pun intended )
Your dizzy friend in Spokane, Todd
ā Begin quote from āGo Gonzagaā
- Regarding exercise, he did not have an answer why it makes me feel rotten and others will barely notice it. However, he emphasized the importance of doing some kind of physicial activity on a daily basis and, essentially, muscling through it.
ā End quote
The kidās neuro recommended the same thing for him. We had trouble getting him to muscle through when he was feeling so miserable. But heās walking home from school again, and in the next week or two, heāll start walking to school again. (Thatās about a mile.) He was going to start walking to school, this week, but he was afraid heād be so tired when he got to school that he wouldnāt be able to pay attention in class. So weāre going to give him a bit longer to get his strength back up.
Iām glad you got to see a doctor that gave you some hope that things will get better. Hope is important!
Regards,
Mamabear
(cheering for you from the other side of the state!)
Todd - weāre all excited to get your report from your consult with such a great specialist who seems so common sense. And, I think itās an excellent indicator that Baloh, of all people, is optimistic about your prognosis of improvement/recovery. Youāre probably battle worn from all your struggles with this horrid conditionā¦ it does tend to suck the life, courage and optimism from us all and depletes us of the energy to hope again. Weāve all been thereā¦ heck, I was there just this morning. However, the rest of us will hope for you as we continue to hope for ourselvesā¦ Keep us posted on your progress with the increased dose of celexa. In the meantime, how the heck do we get on that Love Train with the rotation of meds???
Gail
Scott - I just LOVE our new diagnosis of MAIFLSā¦ hilarious, couldnāt stop laughing.
Hey Todd ā so to summarise Balohās advice I thought Iād bullet point this. Some of it is stuff we already know but it never hurts to recap:
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Migraine can be ālocked inā and manifest itself into all of the symptoms we experience.
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He is OK with bumping up citalopram to 40 mg and considers 60 mg if necessary.
-
It takes approximately 3 months at a higher dose of medication to know whether or not it is having any kind of effect.
-
This is not āMAVā (as some strange entity in its own right) but simply migraine, period.
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This is a genetic disorder of the brain which, more often than not, is hereditary.
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Everyoneās threshold is different.
-
Sleep and stress are the biggest triggers.
8 ) Baloh not overly concerned about a migraine diet.
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Nothing else makes sense. The symptoms described would not be caused by an inner ear disorder or compensation would have occurred, period.
-
Regarding exercise, Baloh has no answer as to why it makes some feel rotten while others will barely notice it, although he emphasised the importance of doing some physicial activity on a daily basis.
Marci ā while I can understand the buzz in wanting to see Baloh, I would be asking myself the same thing. It was Baloh who told another person here the following:
ā Begin quote from ____
Do not get into the habit of looking for endless doctors once you have the diagnosis because it can feed into the cycle. Accept the diagnosis. Itās natural to always wonder and look for a more definitive answer. Focus on lifestyle changes: sleep, eating patterns, regular exercise, vigorous exercise, meditation or other relaxation techniques. The medications are just a help as well; theyāre not the full answer.
ā End quote
Unless you think he may have some better ways of tweaking or suggesting meds Iām not sure I can see the benefit.
Scott 8)
Thanks for the recap Scottā¦you did a great job with it and hit the major bullets points of my consult with him.
He will be sending me his office consult notes (which will include medication protocols) in about 1 week. When I get that, I will post on this thread as to keep everyone infomed and/or updated about Dr. Balohās thoughts.
One other thing about my visit that I have not mentioned yet.
(And this is actually in reference to some of the peopleās signatures at the bottom of their postsā¦where they describe their dizzy history)
ie. at the bottom of Scottās signature, it states āvestibular neuronitis which triggered MAVā
Dr. Baloh would vehemently veto this description. He states that the migraine activity is a hereditary issue and , essentially, it is a sleeping giant in your body. For some, it will manifest itself (and the related symptoms) at a young age, for othersā¦it may not kick in until you are in your adult life.
There is not a ātriggerā per se which kicks it off. He sheepishly admittedā¦āNo one really knows why this condition finally decides to rear itās ugly headā. He would relate Scottās vestibular neuronitis episode as the initial start of migraine activity, which he was already pre-disposed to getting. Hope that helps with his explanation! Todd
Glad you had a good trip/appointment Todd. As for the posts above, very interesting reading. I love Scottās new ālabelā for us btw, lol. I do wish we could come up with something other than just Migraine, even though that ultimately IS what we have. If you just say āmigraineā to someone, they have NO idea of the hell we are going through, so I still like MAV, even if it isnāt exactly the most accurate (but close enough since vertigo is one of the worse symptoms we deal with.)
My āmigraineā neurologist basically said the same thing to me, although I cannot remember her phrasing. She said I was stuck in the cycle too and that all my headaches were migraine. Now, I donāt completely agree with that because there are headaches that I consider āregularā ones that I can attribute to other things such as my monthly menstruation cycle. I would not count those as migraine-related headaches even though she always asks how many headaches I have a month, no matter what type I have, which makes me nuts.
Now, my ābalanceā neurologist (I have two doctors; they are well-known specialists in their areas and know of each other) would not necessarily agree with Balohās statement below, or rather, he told me that my condition was indeed ātriggeredā by my jaw going out/TMJ issues. He noted that any blow to the head could have done this as well. HOWEVER, he also said that because I likely had a predisposition for it - past problems with balance years ago - this just flipped the switch so to speak. Plus, I did start getting migraines around the same time in my life. I donāt think heredity necessarily has anything to do with it even though it does raise your risk factor; no one in my family has a history of migraines. So maybe I am just the lucky one neurologically/genetically to have this?
Cheers, Bonnie
ā Begin quote from āGo Gonzagaā
Dr. Baloh would vehemently veto this description. He states that the migraine activity is a hereditary issue and , essentially, it is a sleeping giant in your body. For some, it will manifest itself (and the related symptoms) at a young age, for othersā¦it may not kick in until you are in your adult life.
There is not a ātriggerā per se which kicks it off. He sheepishly admittedā¦āNo one really knows why this condition finally decides to rear itās ugly headā. He would relate Scottās vestibular neuronitis episode as the initial start of migraine activity, which he was already pre-disposed to getting. Hope that helps with his explanation! Todd
ā End quote
sorry Iāve been MIA for awhile. just been very fed up with this crap, but I wanted to thank Todd for filling us in about your visit. that was very kind of you. I was actually wondering what your symptoms have been? If you can fill me in that would be great. sorry if I am having you repeat yourself. I find it very encouraging that Dr. Baloh sees a light at the end of this misery. that is very reassuring.
Thanks again,
Lisa
My neurologist encouraged me to continue exercising, BUT to back off from the more strainful, which in my case currently is the buttefly (swim stroke), because I got disoriented and briefly amnesic several times whilst swimming. Also to get goggles that didnāt press so hard.
So yesterday I tried new goggles, which didnāt fit well enough to keep water out. I got out of the pool a few times to adjust them (part of this takes a wrench), and when I got back in and continued swimming I found myself with a bit of auraāin the case the type I think of as corner-of-the-eye ādid I see something?ā So I got out, spent a few minutes doing a repositioning routine, and then got back in for a few more laps. However, I was very leery of spacing out, because this just wasnāt working very well. So after a dozen I jumped out, changed, and went up to the weights room. Worked out there for another 3/4 hour, with a short break for another bit of rebalancing routine when I got dizzy pumping.
My point is that I feel real successful in staying present and limiting the effect of the MAV on a rough day. It did mean not simply muscling through, which Iāve tried doing in the past. Even trying to emphasize my focus on breathing meditation when I experienced aura whist swimming has failed to prevent dissociation. Being willing to stop, getting out, doing what I needed, even when it wasnāt what Iād had in mind to do, is what worked.
ā Begin quote from āGo Gonzagaā
One other thing about my visit that I have not mentioned yet.
(And this is actually in reference to some of the peopleās signatures at the bottom of their postsā¦where they describe their dizzy history)
ie. at the bottom of Scottās signature, it states āvestibular neuronitis which triggered MAVā
Dr. Baloh would vehemently veto this description. He states that the migraine activity is a hereditary issue and , essentially, it is a sleeping giant in your body. For some, it will manifest itself (and the related symptoms) at a young age, for othersā¦it may not kick in until you are in your adult life.
There is not a ātriggerā per se which kicks it off. He sheepishly admittedā¦āNo one really knows why this condition finally decides to rear itās ugly headā. He would relate Scottās vestibular neuronitis episode as the initial start of migraine activity, which he was already pre-disposed to getting. Hope that helps with his explanation! Todd
ā End quote
Hi Todd,
I think weāre all actually saying the same thing, but just getting our language mixed up. Triggers and causes are not the same thing. Scott will be the first to agree with Baloh that nothing, other than dodgy genes (which are inherited) ācausesā migraine. One has a āmigraine brainā or one doesnāt. I do, you do, Scott does - we all do. Hurrah for us! :lol:
Some of us have āexperiencedā migraine since we were kids/teens, but for others it does appear that something set it off/put it into motion/awakened the giant/was a big bang. Many things can do this - a viral illness, a blow to the head, bad TMJ etc. These things do not ācauseā the migraine but for some people they can indeed ātriggerā it.
Many people have a mistaken belief that there is an underlying ācauseā to their migraine, other than the hard wiring of their brain. For example they may think that a misaligned spine, allergies or stress are the ācauseā of their migraine and that if they āfixā those problems they will be ācuredā of migraine. No. Getting those things under control may indeed also help get our migraine under control but they wonāt ācureā it. Similarly if certain aspects of a personās lifestyle (sleep, diet etc) aggravate their migraine then fixing those things up will also help control the migraine. Ditto meds.
Iām rambling now so will stop :lol:
Vic
Good post Victoria!
I think you stated it better than what I intended
I think the point the Baloh was trying to get accross to me was that people have āmigraineā their whole life and when the dizzies set in is anybodyās guess. He did not seem to have an answer as to why , but that was his explanation.
Thanks for clarifyingā¦you nailed it better than I did
Take care and everyone get better!
Todd
Hey Todd ā
Yes, I think given what I heard Baloh say previously (about a year ago in an interview), he is trying to say that we were born with this predisposition ā and most likely it was inherited. His aim is to make sure people donāt think they ācaughtā this somehow or that it was ācausedā because of something they did. It was lying dormant or had not yet been expressed by the genes. If I think back to my 20s, I partied my ass off, stayed up all night, drank like a fish, ate whatever and was fine. And then as I hit my mid 30s things started to change with long-term migraine events (I didnāt know it was migraine). I triggered the first event when I trialled a hair loss drug called Propecia which messes around with testosterone levels in the blood. Two weeks into the trial and it started. That episode of neck and head pain last 8 months and then just stopped. Meanwhile most of my hair is still in tact :lol: . I often wonder if I would have been in the migraine pit now if I hadnāt messed around with hormone levels. Probably.
If you check out Ballengerās otorhinolaryngology: head and neck surgery By James Byron Snow, Phillip A. Wackym on Google here:
ā¦ youāll see they refer to vestibular neuritis as just the thing to fire this off. Dr Chris Silver refers to a āBig Bangā event which can set off the chronic state of MAV. I donāt think everyone has to have such an event but it clearly seems to happen for many. Have a listen to his talk here if you havenāt already. Itās a must hear:
http://mvertigo.cloudapp.net/t/dr-nicholas-silver-talk-migraine-action-agm-2009/2214
Thanks again for keeping us in the loop.
Scott
ā Begin quote from āscottā
I triggered the first event when I trialled a hair loss drug called Propecia
ā End quote
Advanced Hair? Yeah yeah!
I wonder what happened to those con-men? Wasnāt Shane Warne the face for that company?
ā Begin quote from āscottā
I wonder what happened to those con-men? Wasnāt Shane Warne the face for that company?
ā End quote
He was indeed the farce for Advanced Hair. And now heās stepping out with Liz Hurley. He must be seriously, um, charismatic because with the hair, the blue teeth and all that sexting he does not, superficially, present well.
Sorry you had to trade off good hair for chronic dizziness/migraines there, Scott. Bummer. I think my sleep disorder tripped off my elevated migraine levels. I do feel fortunate that Iām not still wandering around looking for help and have at least some answers at this point, though I had some low points this past week when I rather felt that way. This forum helps provides so much support and info. Hey, Victoria- just FYI -I really donāt think any of us who have allergies or are doing upper cervical work, acupuncture, etc. have any illusions that these treatments ācureā migraine - I know that my chiro has the integrity to promote reasonable expectations and sees his work as treatment to help manage the condition. However, if he suggests turmeric I may have to leave and not come backā¦: )
Gail