I haven’t been on here in quite sometime. I was at one time a frequent visitor but due to the fact that I often put my attention on the worst case scenarios I read here and became fearful of them becoming my story, I decided that I needed to clear my head a bit. Which is really what I have been doing for the past year and a half or so.
I found a wonderful doctor where I live who is like none other that I have met. The thing that got me hooked on him was that he is not so trapped by naming and labeling an illness. He really looks at the symptoms and from there begins treatment. He was educated at Vanderbilt University Medical School and then did his fellowship at Mayo clinic. His wife had a horrible physical “crash” after their third child was born and ended up with a long list of diagnosis’s which in the end really didn’t do anything for her. I have done a lot with him. I have tried elimination diets, different supplements, changing exercise habits, etc. I most recently did a test that measured my mitochondrial function. I didn’t know it at the time, but mitochondrial disfunction is something that is being associated with CFS/FMS. My tests came back indicating that I do indeed have this physiological issue. We are working now with ways to correct this issue. I am hopeful that we will find an answer.
My reason for sharing this is to say that I believe that a large part of my dizziness comes from CFS as this is a major complaint of those who suffer from CFS. I also think that for me, exercise is often times a big trigger for dizziness. This has been a very hard pill to swallow for me as I have been a personal trainer in my life and been a total exercise addict. But, time and time again, this continues to be proven. I went for a walk/run last night and today I am swimming in brain fog and have an excessively aching body. I am trying to figure all this out and I really am hopeful that I will. I believe that those of us with hyper-sensitive brains have a stage that is set for all kinds of whacky stuff. Lovely huh?
I have definitely been better this past year and a half and I am only taking Paxil for my anxiety and a sliver of Kylonopin at bed time. Believe me, I still have a hell of a time with this whole thing but I have also shifted my attention to recovery and I believe it. That belief has, more than anything, been very helpful.
I am enclosing a few articles that I have found that are worth sharing. Hope you guys are hanging in there and believing that we’ll find an answer!
Hi Molly - that’s quite a story. I was diagnosed with chronic fatigue/fibro 3 years ago among other diagnoses along the way. However, this fall I saw a neurologist who looked at the total picture of overwhelming dizziness (my major symptom/complaint) with some fatigue and neurological symptoms as a diagnosis of migraine variant which is like migraine associated vertigo. I have taken a long list of other medications, herbs and supplements over a 3 year period of time, but nothing other than the topamax she prescribed has ever touched the dizziness and brain fog the way this medications has. I now have days where I am almost symptom-free, very functional, and almost back to where I used to be. There seems to be a huge overlap in symptoms with many of these conditions so it’s difficult to really label us. However, I feel most at home on this forum these days.
Gail
Hey Gail - I do agree that I have MAV as well. My biggest complaints these days are fatigue and lethargy. And like you said, there is such overlap. I am so happy that Topomax has helped you. I had a brief go with it and it didn’t suit my very well unfortunately.
Are you able to exercise now without much difficulty the next day? That is something I am looking at in my own situation? I sure miss being able to work out really hard like the old days.
Hi Molly
I don’t know that I work out “hard”… but I walk, ride an exercise bike, lift light weights, and then rest and relax when necessary. One big thing my early chronic fatigue days taught me: pace yourself. I was not in the habit of doing less than I thought that I could and would push myself unmercifully to exhaustion. That’s when the aching, etc would start. Not anymore. I don’t get pain or the aching anymore, particularly after avoiding certain foods and ingredients like wheat gluten, corn, and dairy. I still get fatigued and lethargic - especially in cool, damp weather. However, I’d say that all in all, moderation really is the key for me. And, I continue to work on staying positive.
Gail
Nice to see you hear again. I’m very sorry to hear about exercising exacerbating your symptoms - that must be quite a blow. But I am glad that you’ve found such a wonderful doctor and that you’re getting some answers. Happy Christmas!
Hi Molly,
I was doing some research on mitochondrial function, and whenI mentioned it to my doctors I jst got a blank stare…what test did he do to confirm this? I think this is so interesting…
Kelley
Hi Molly,
My biggest problem is I cant exercise either. If I do ANY exercise at al I am supper foggy, dizzy, out of it the rest of the day. I have been an athlete my entire life and it has been almost impossible for me to keep my head up and not let this ruin me. I have not gotten an official diagnosis. Some doc’s say Migraine equivalent some say anxiety disorder. No one has ever said CFS! I get dizzy if I start doing any exerhurtion, house chores etc. I haven’t heard of many people on this sight with this symptom( exercise making us dizzier). I wonder if it is MAV or CFS?
It can be difficult to discern between motion initiated dizziness (MAV/Meniere’s kinds of vertigo/dizziness) and CFS dizziness brought on by adrenal exhaustion and mitochondrial dysfunction, etc… I’ve been diagnosed with all of these but I believe that due to more precise diagnosing I am now only dealing with MAV. In CFS, the adrenals cannot keep up with the body’s demand and are depleted often in addition to problems with low blood pressure/hypotension (NMH - neural- mediated hypotension or something like that - can’t remember exact phrase). Many/most CFS/fibro patients have sleep disorders as well. Anyway, these are only some of the current recognized theories around the exhaustion especially during and after exercise. In CFS/Fibro, just as in Meniere’s and MAV, patients are cautioned to eliminate foods from their diets (sugar, caffeine, wheat/gluten, dairy…) and rest plus take supplements that feed adrenals and support the body such as B12, Vitamin D, CoEnzyme Q, Ashwagandha and zillions of others. The crossover between all these conditions is quite eerie and fascinating. Unfortunately none of these conditions accommodate a daily lifestyle that most of us equate with as “normal”.
Gail
Gail,
So you DO believe that the symptom of dizziness after exercise can be MAV related? I would really love to have a final diagnosis so I can stop guessing and stressing. I also think you are right CFS patients probable have more symptoms than the one we describe.
Hi Joli
I would think that MAV could cause exercise dizziness and fatigue. Afterall, the body and brain are working overtime to try to keep the neurology and signals straight and firing correctly (I don’t know how to explain it) so it makes sense to me. And, many MAVers have difficulty navigating stores, malls, sports arenas, crowds, or over-exertion. Who is really to know where the dividing line is between some of these conditions anyway?? The weird thing that I’ve discovered in 3 long years: it seems that almost anything is possible…!
Gail
The test I took was a urine test. The best I can understand it, there are 6 (?) steps to making ATP. If at any of those steps there is a problem, the whole process gets screwed up and the result is no energy. My results presented a problem at step 3 and 4. My doctor and I are trying to address this issue now. I think there are very few doctors who really do know about mitochondrial dysfunction. After my doctor worked at Mayo, I think he decided that sometimes there are more possibilities than just an across the board diagnosis. He is very explorative in his approaches and I have never felt him look at me like I am crazy. I really appreciate that after experiencing so much of the “she’s a coo-coo” look I got at the beginning of all this. As far as what I have, I don’t know. I do believe that I have MAV but I don’t think that is all. I would venture to guess CFS of FMS. I have a lot of achiness when I have a flare up. So who knows? As long as I watch it and don’t push myself too hard, take my suppliments and get enough rest, I do pretty well and live pretty normally. Of course I wish I felt great more often. Someday…
Hi Joli
The topamax helps brain fog across the board. And, oddly enough it has helped with achiness and tons of other symptoms that I would not have associated with MAV/migraine variant (my official diagnosis). It’s all so weird. I’m not nearly as tired and my brain just feels more settled. Concurrently I’m doing physical therapy for my neck and also seeing an upper cervical chiropractor, and it’s all making a big but gradual difference. Though, during this holiday season I’ve had to rest more than a month or so ago so I’m not sure if that’s the transition with the neck work (that’s what the practitioners tell me), gloomy weather, holiday stress, or what. I usually feel better after moderate or mild exercise such as walking or stationary bike but I don’t push myself unmercifully, believe me! However, in the past before topamax, I’d be twice as dizzy from trying to take a walk and I know that it was the untreated MAV.
Gail
Hi Kelley - Yes, many of them (tricyclics, SSRI’s, and SSNRI). However, I never tried any of them for MAV specifically. I tried a number of them when I thought I had chronic fatigue/fibromyalgia… However, I was experiencing dizziness even then, and none of them made a dent in the dizziness but were effective for anxiety and/or depression.
Gail
How’s the medication research hobby going???
Hi Gail,
I am glad that the topa working for you. I haven’t gotten real good results from the dizzy/visual stuff with the Cymbalta, but it helped, and also helped the depression and anxiety…but i find i need more meds to cover all my symptoms. I have been doing well on the Promethazine at night and 1/4 tab of Klonopin on the am…pretty much renders me normal. Except for yesterday I had some mall Chinese food and felt totally crappy afterwards…I hit the K twice today and still feel dizzy…
On vaca in Sydney, AU, so using meds pretty liberally to ensure a good trip.
My doctor seems to think that Lamictal would be a good one for me…but so far sticking with this.
Kelley
Hi Molly
I too have cfs/fibro as well as MAV and although my work is not in fitness/exercise, I used to spend a great deal of my spare time doing some form of activity. After I caught the virus and the symptoms worsened Ifelt the lack of exercise was the greatest loss. In the early days if I saw a jogger or walker out of the window it would make me very tearful, angry and frustrated but now that I have improved and have mastered the art of pacing I can walk for about 30 minutes or swim for about 20 minutes. Although both make the symptoms slightly worse, the physio I saw said that this was good as it meant the brain was being challenged and would gradually adapt. He seems to be right so far but I certainly can’t do any marathons!I have found a magnesium supplement useful in the form of tablets and an oil spray by Better You which I use before and/or after any exercise.
I’m interested in anything you have on mitochondrial disfunction. Dr Jacob Teitlebaum follows this theory. Have you read his book From Fatigued to Fantastic?
Sian
“I’m interested in anything you have on mitochondrial disfunction. Dr Jacob Teitlebaum follows this theory. Have you read his book From Fatigued to Fantastic?
Sian”
Hi Sian -
I will look at that book. I haven’t read it abut would love to. I am also walking these days. As long as I just do that and don’t decide to insert a quick jog, I can manage things pretty well. I will try swimming again. When I first got this, the motion of swimming caused more dizziness. Now that dizziness isn’t the main problem, I will give it a try.
Thanks
Great to see you on the board again. I too have thought about CFS etc as you know and then after reviewing Nick Silver’s slides and this case history I am certain it’s all just migraine. I know you and I share many similar symptoms – especially the exercise intolerance which is a MAJOR hassle. Have a look at this case history and what happened after treatment with Prothiaden for this particular case.
