While it has been nearing 3 years since my diagnosis I am on the hunt for better alternatives. I have seen both Dr. Hain and Dr. Cherchi at Chicago Dizziness and Hearing and while I have had some improvement, I have not seen growth in 2 years. I am on a combination of drugs that allow me to function if I avoid all of my food, chemical, fragrance and visual triggers. That’s a lot to avoid! Any one of those things for more than a few minutes can leave me dizzy for days. I still can’t go into any type of store, but at least I can drive ; )
I have seen acupuncturists, allergists, natruopaths, neurologists, ENTs, chiropractors, vestibular rehabilitation therapists…I’m sure I missed a few! I have tried a myriad of medications, but nothing has gotten me past this point. In fact, my doctors not only have said I should be getting better, they seemed shocked when I tell them I am not. Thus, I waited patiently for an appointment at the Mayo clinic In MN.
That being said, my appointment is next week on three separate days. I will see three different doctors and undergo a plethora of tests, most of which I have already completed. I’m trying to remind myself I won’t get any answers when I go. In fact, I do not reconvene with the team of doctors before I depart or after my testing is complete, which tells me this will most likely be an information gathering session.
I’m still nervous…for multiple reasons really. Thinking about how horrible I will feel after the testing is certainly anxiety provoking, navigating buildings/hospitals that will most likely make me dizzy. WOndering if there will be any triggers in my hotel room and finally the ultimate fear…what if they can’t fix me?!
Just needed to share some thoughts!
I’ll let you know how it goes upon my return : )
I see you posted on the “Glasses” thread - I followed the link to the Moran Eye Center in Utah and was very interested in what I read there. Have you considered trying that since you have difficulty going into stores? My brother has blepharospasm and I see that the special rose tint (not just any rose tint!) was helpful for people with that diagnosis as well as migraineurs, according to their research.
I didn’t see that anybody else had replicated their data (which is what really makes you confident in someone’s research), but we have MAV’ers here who vouch for it, and it’s not that expensive like a lot of the quack stuff that’s out there for sale to desperate people. So it might be worth trying. I sent the info to my brother because he’s really troubled by his frequent blinking, which just came on in recent months.
Like you, I started in Chicago and wound up at Mayo after 14 months. Spent a few days there, diagnosis was chronic subjective depression. They started me on Celexa and I am almost 85-90% better after six months. They also had me start tai chi. Hope you get good results!
I went to mayo in FL and ended up with two surgeries for SCDS…you might educate your sell on this before you go…google SCDS support for a lot of information. This happened to be the wrong diagnosis for me, but possible you have
Superior Canal Disience Syndrome, you have tried a lot…good luck.
Have you considered trying that since you have difficulty going into stores?
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Hi Mary Alice, I think these may help to prevent the migraine (head pain) but not likely with the dizziness. I seem to have developed a visual flow problem since having MAV and the only thing that helps is closing my eyes all together!
Longshot and Jay bird,
It is always so interesting to me to see what others have been through, their dx and treatment. Who knows! At this point I don’t care what they call it, as long as they can treat it
David, nothing fun planned while I am there, but I hope to catch up on with my online graduate classes! The weather should be 70 so hopefully I can sit outside while I do this.
Thanks Lisa!
I leave Tuesday after work…the closer it gets the more nervous I get!
During my trip I went through a variety of tests, all which were provoked my dizzy symptoms and that they did. After three hours of testing on my first day I was miserable and exhausted. In fact, I still feel that way 4 days later.
The gist of the information I came home with is that I most likely do have a migraine disorder in combination with what is called Chronic Subjective Dizziness or CSD. This is a newly classified disorder that the Mayo Clinic characterizes as:
“Mayo Clinic’s ear, nose and throat researchers are interested in finding ways to reduce the risk of balance-related falls and injuries, and improving diagnosis and treatment options for balance problems. One area of their research focuses on creating a reliable assessment tool for identifying a person’s fall risk based on his or her specific balance problem and symptoms.
Researchers are also working to classify chronic subjective dizziness syndrome as a valid medical condition. People with this condition have unexplained physical symptoms, such as recurrent dizziness spells. Mayo Clinic researchers are on the forefront of developing physical rehabilitation strategies and testing drug treatment options for this syndrome.”
I was told that this may actually change names over the next year or so as more knowledge is gained and more research is done.
The preliminary recommendations are for me to restart the migraine diet from the beginning to see if I can identify any new triggers. Sadly this will include an elimination of all caffeine : ( They also are looking into possibly two different medication changes for me. One geared at head pain control and one towards dizziness.
Finally, I will begin physical therapy with the intent of exposure and habituation. This last part I am not especially pleased about, however, it is worth a shot. The goal being to start at extremely small units of time…seconds and over the course of many many months work up to a half hour or more. This includes going into the grocery store which I have been unsuccessful in over the last (almost) 3 years. I will also be doing some crazy umbrella twirling and head turns. Sounds like fun, huh?
The doctors will reconvene, put together an official recommendation and send that to me. I will then conference with my doctor who will then take over the medication trials and so forth. I will let you know more as I do!
What I would like to know is how they differentiate between what they think is CSD and simply a chronic migrainous state with dizziness in full swing. I personally have a hard time believing in CSD and would have thought that if there is real evidence that it exists, that it would be extremely rare. Anyway, we’ll have to see what the Mayo comes up with or publishes for peer review on the topic.
Definitely knock off the caffeine. That alone could be keeping your symptoms alive and kicking. Have a listen to Nick Silver’s talk if you haven’t already:
Thanks Sarah for this update. Like Scott I wonder how they can truly differentiate between a migrainous condition and CSD. Is there a defining factor that makes CSD more likely than MAV?
I was also interested in the habituation idea. Only a few days ago I was thinking how, in order to get to a relatively comfortable place as far as doing some things are concerned, I have to repeat an activity even though it makes me very uncomfortable, sometimes to the point of simply having to give up… til I feel brave enough to face it again. Looking back I think it is only this dogged determination to push through that has helped me, horrible though it is to do. I’m thinking it’s a form of “therapy” really, helping my brain to compensate. Mind you, my brain also seems to DEcompensate at regular intervals when I’ve been a bit too lax with the foundational stuff - diet, lifestyle, sleep - and then the process has to begin again. Thankfully, now, after some years of this, I always seem to get back to where I was eventually.
Now, that said, I’m not talking about dealing with dire, incapacitating dizziness of course. I just have to give into that, no question, but the sort of still pretty disabling stuff but where you judge you’re up to trying to do something, even when you know it’s going to be a struggle and make you feel rough. Mind you, I think it’s taken me a long time to judge things correctly at times and strike a balance between being sensibly courageous and downright stupid!
Anyway, what I’m trying to say is that, done properly, I think habituation has merit.
It will be very interesting to see what they come up with. Do let us know.
thank you very much for sharing about Mayo. I hope that you are resting best you can. I know these medical visits, especially with travel involved, are physically and emotionally draining, to say the very least.
just some thoughts on what you wrote:
I believe - correct me if I’m wrong - that definition of migraine with vertigo (or whatever it is called in the headache manual - not sure what this manual is called lol) is that vertigo is only episodes. So, I’m sure at Mayo they are going by the strict definition of migraine with vertigo. I think regardless of the name, as long as they use meds to treat it (and likely the same as MAV meds), it doesn’t really matter what it’s called. I am feeling so ill. I hope I’m making at least a bit of sense.
Also, as far as gradual exposure and habituation helping this, I have to respectively disagree (at least from personal experience). I just got out of a hellish shower which I have taken every single day for almost 5 years of this crap, and it doesn’t get any easier. I walk to the bathroom numerous times per day - doesn’t get easier. I try to go stores holding on to a shopping cart as much as can and doesn’t get easier. I can go on and on. To say that you can expose and habituate is ridiculous. I am sorry to be so bold in stating this, but it irks me that they would think this.
I hope so much that they have helpful suggestions about the meds, as I think that’s where we will get well. Please continue to update us. I give you immense credit for going, and I hope so much you feel all better soon! you have gotten better on meds (not great, but better) which surely indicates to me that you are treatable and will get your life back 100%
Thinking this through some more, and considering my own experience, I think that the habituation process definitely does have a place but not until a certain amount of stabilisation has occurred. For most this would probably come via meds, for me it was via diet changes.
What I would like to know is how they differentiate between what they think is CSD and simply a chronic migrainous state with dizziness in full swing. I personally have a hard time believing in CSD and would have thought that if there is real evidence that it exists, that it would be extremely rare. Anyway, we’ll have to see what the Mayo comes up with or publishes for peer review on the topic.
Definitely knock off the caffeine. That alone could be keeping your symptoms alive and kicking. Have a listen to Nick Silver’s talk if you haven’t already:
Thanks for the audio. I had not heard it before and found it interesting. I especially like the way they pronounce migraine
Joking aside, I will be eliminating caffeine over a one-two week period. I have already started a steady decrease, and can not even think about going cold turkey.
Brenda and Scott,
Your question is a good one and one that I have as well. I did ask it, but don’t feel that I got an answer. It was more of a talk around it answer. What they did say was that I would not be dizzy 24/7 if it was migraine which is a direct contradiction of what I have been told by my other doctors. I will be e-mailing all of my follow up questions once they mail me the report and will be sure to include that one in an attempt to get a more definitive answer.
Lisa and Brenda,
I too am not totally on board with the idea of habituation. i don’t think my symptoms are controlled enough for it to be effective at least not yet. One of the doctors I saw mentioned it needs to be a good combination of therapy AND medications. I’m not sure I’m there yet. That being said…Lisa, I am in the same boat you are. The same things make me dizzy EVERY day and have not gotten better over the course of years. You would think I would have adjusted to this. Hopefully I get the reports and recommendations soon so I can talk it over with my doctors and make some decisions.
The other scary part is that in the description set forth by the Mayo clinic " Mayo Clinic researchers are on the forefront of developing physical rehabilitation strategies and testing drug treatment options for this syndrome". To me that means, regardless of calling it something else, there is still no research that backs the treatment. I guess that is why they call it “practicing medicine”
… What Lisa says… I have to agree with her entirely. I tried all that stuff but NOTHING worked until the meds were thrown down my neck.
Wishing you the very best of luck but like Scott said, caffiene!!! Are you still drinking caffiene!!! That is the FIRST thing that has to go…
I’ve tried to have caffiene a couple of times since making progress in getting well, and it STILL sends me mental. :evil:
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I did the migraine diet three years ago and eliminated caffeine along with a long list of other things. I introduced things back in after 6 months and was able to identify many triggers, but coffee didn’t seem to have any effect. In all honest I was so sick at that time, I might not have noticed the difference.
I have also tried VRT before and it made things worse : (
What I was asked to do this time includes setting a stopwatch the second I walk into a store and timing how long it takes to before I get dizzy (it will be instantaneous). I then need to close my eyes and rest until the dizziness passes and continue on into the store for the same number of seconds. Then rest and repeat twice on my way out. Every two weeks I am supposed to increase my time by one minute each of the (4) intervals, until I reach 30-45 minutes. My question was…What happens when I feel horrible, or have residual dizziness the next day?
The response was you did too much and to back off. I can’t imagine this is going to work, but I am going to try my best!
I agree that habituation does not work. And many docs seem to think that MAV has to be episodic… hence my docs throwing around Mdds for the 24/7 rocking I face day in and day out despite my best efforts at trying to live life. It is so frustrating.
I wonder if they don’t believe so much in habituation, but getting us more used to tolerating the horror of the dizziness we face? Kinda like accepting a new normal? For me I am realizing that might be the best I can ever hope for. I just don’t know ;(
Brenda and Scott,
Your question is a good one and one that I have as well. I did ask it, but don’t feel that I got an answer. It was more of a talk around it answer. What they did say was that I would not be dizzy 24/7 if it was migraine which is a direct contradiction of what I have been told by my other doctors. I will be e-mailing all of my follow up questions once they mail me the report and will be sure to include that one in an attempt to get a more definitive answer.
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Hi Sarah,
There are some cases in this paper that appear to be chronically dizzy to me and at least one saw complete resolution of symptoms on 2 mg of pizotifen after being ill for 4 years. The new Mayo definition for “CSD” doesn’t hold water for me. I’d like to see something in the literature first – a thorough review before they start using new definitions like this.
I agree with Scott- I asked my Nuero about the whole CSD thing (wondering if I had it) and he thinks it’s a “made up” term just to categorize and bunch the patients they cannot diagnose.
I was thinking about going to the Mayo Clinic as well but something tells me I’d get the same diagnosis…
Thank you for sharing and hopefully you had a decent experience and will get the answers you are looking for!
Not to belabor the point I brought up before - but I went to the University of Utah Moran Eye Center site to read about their rose tint for glasses. (My brother has blepharospasm, which is another neurological condition that has benefitted from this special tint). One patient’s success story struck me, as it relates to your problem with going into stores:
“One symptom of Dale’s illness is extreme sensitivity to bright lights, particularly the sun and fluorescent lights.”
If regular sunglasses have helped you somewhat, then perhaps an evidence-based, relatively inexpensive treatment that you haven’t tried yet is worth a shot? It’s not just migraine headaches that have been helped by this tint, so maybe it’s worth considering.
If you have a pair of prescription glasses to send them, it’s only $40 including postage to have them apply the tint. If you don’t need to wear prescription glasses, perhaps you could buy frames you like and ask Moran about what type of lens (if any) to have put in them before sending the frames.
