Back on track again. I asked Prof Rauch if he thought there was a link among migraine, CFS and fibro.
“I have long been impressed with the high prevalence of CFS, IBS, and fibromyalgia in my migraineurs and suspected that they are versions of migraine – or at least share some pathophysiology. I am not familiar with the papers cited in the article but I find it all very plausible.”
S
Scott,
Thanks for sharing. I think I can give a little bit of input here as i find myself swinging between both camps. I am usually on the side of science. If you meet me, you would see I am always really logical and really metrics focused.
The problem I have is this, I was told I have MAV, I completely changed my lifestyle and have started doing the drugs thing, nothing has changed. My diet is - Green Juice in the morning, Veg Soup for lunch, Rice + Veg + Organic grass feed meat or fish. I have about 7 or 8 cups of veg per day. That’s basically it. I drink lot’s of water. I mediate. I don’t drink etc etc. Basically, I’ve done it all. No change. I’ve tried two meds so far and haven’t been able to get past the first week.
I also have chronic joint pains, which all started 5 years ago when I began to get face pains before I started getting really dizzy.
Ally my symptoms are progressive. My health is WAY worse today than it was when this started. My lifestyle is WAY better today than it was then.
The reason people swing into looking for other answers is because nothing is working, so I think “hope” is a big factor here. I also think a lot of people lose trust in the medical profession. I certainly have.
I think a lot of people end up hopeless so end up in the void of looking for anything to help. I know that happens to me and it’s difficult to bring myself back around to facts. But I usually do or have so far.
Scott,
You are such a smart ass and you think you know it all. I share what I believe to be true. If you don’t like it then … Well. I don’t give a rats ass. I learned a lot through this journey and things change. I am doing well now so why does anything else matter? I am not saying that the Topamax did not help me, just that it masked my symptoms…
Come on guys let’s not have another Lyme disease row! The bottom line is that even the experts are unclear about all these conditions and exactly what causes them or why they start. It isn’t helpful for anyone to make categorical statements about things which aren’t proven. Everyone can talk about their own experiences and in sharing those experiences we can all learn and hopefully science will get to the bottom of these conditions one day.
Scott–thanks so much for sharing that reply from Rauch. Quite fascinating!!
Yes, I was astounded at the change in my mom. She had always been very sparing in her oxycodone use and didn’t like taking it, but it kept her functioning. The Effexor was a startling and dramatic change, unlike anything in her life!!
I think it takes most doctors a long time to come to terms with “new” ideas (e.g., painless migraine and migraine-caused dizziness–even though it’s not new, just not taught to them!), and this idea of migraine and fibro, CFS, etc. having some common basis is likely to take a long time, too (if in fact it holds up). The whole thing is VERY intriguing.
Nancy
P.S. Thanks for posting that list about why people may hold certain beliefs that are unchangeable or hard to change. I think that can apply to a lot of other things besides medical beliefs as well. We all have our own complex psyches. (I know I got mine…)
P.S. Re my mom, I should also mention that she is suffering from progressive dementia, and she seems less and less able to pay attention to, remember, and communicate her bodily states, so perhaps that plays some role in her reduction of pain. But the Effexor (which she started a couple of years ago, I think, before her dementia had advanced so far) VERY clearly had a strong and fast effect, so there’s no doubt it helped hugely.
— Begin quote from “BeautifullyBroken”
just that it masked my symptoms…
— End quote
BB – you think I’m being a smart ass but I’m trying to make you see reality by looking at your seemingly forgotten history. Topamax does NOT mask symptoms. Who’s been feeding you this junk? You’ve been here for a year and out pops this zinger! :shock: As I said before write all you like about this abx trip you’re on but please don’t pollute the forum with misinformation about what migraine is or how migraine medicines work. There’s a whole internet full of that crap out there. We don’t need any more of it here from you. I want people to be able to come here and leave with accurate facts about this disease.
Hey Nancy, Jem and dizzyk,
Carolyn Bernstein’s thoughts on this:
The comorbidity is interesting but I think we understand the pathophysiology of migraine pretty clearly, doubt that IBS and chronic fatigue are migraine variants. I think with gene studies, we’ll know more and more. I certainly see a lot of migraine patients with chronic fatigue and depression as well.
Will write more later … 
dizzyk – great post on your perspective in what might cause a person to potentially slide into the void of pseudoscience. Migraine is highly prone to this because treatment can be so damned difficult for some of us. However, it’s very hard for me to understand a case that is in every way migraine and even responds to migraine medicines yet that person can still fall into the world of pseudoscience and cook up all sorts of nonsense reasoning behind it.
Don’t give up on the meds. Like you almost all of them trashed me as well. Topamax, TCAs, most SSRIs, Verapmail … and on it goes. But I finally found Paxil and Valium and that keeps my head screwed on straight without much in the way of adverse events. I’m sorry to hear lifestyle changes hasn’t made much of an impact.
Thanks Scott, appreciate you sharing so much info here
there are so many new threads I am probably missing some things but:
BB- I remember distinctly when topamax was helping you- it is definitely possible to have lyme and vm- maybe that is the case- in that event I would question getting off of the topamax altogether? either way i hope you stay well!
there was another member- mlnewman I think- who had the exact same story as you- she said for months how much topamax was helping her- then she changed and said it wasn’t doing anything and she really had lyme and now the antibiotics were helping her- I just don’t see how topamax could “mask” dizziness- maybe valium can but not topamax.
Nancy- Gabapentin did for my fibro pain what effexor did for your mom- it was like MAGIC- but it made my balance way worse which SUCKS so I cant take it. Ironically I can tolerate lyrica which is supposedly similar but it does nothing for my pain. So unbelievably frustrating I would kill to be able to take gabapentin.
Sarah–what a bummer to find a drug that works but has an intolerable side effect. Is there another drug in the same category as Gabapentin that you could try?
Scott–thanks also for the thoughts from Carolyn Bernstein. (I didn’t know who she was, but found her page; she looks like an impressive migraine doctor.)
My (layperson’s, nonscientific, and perhaps not too clear-headed) understanding of the article was that the researchers weren’t necessarily proposing that FM, CFS, etc. were migraine VARIANTS (at least they didn’t use that term, I don’t think), but that they might simply share some underlying mechanism(s), namely “dysregulated sensory inputs to the brainstem.” I don’t know. Anyway, I bet we’ll see more about this.
Nancy
i have tried so many of the chronic pain meds- effexor, savella, cymbalta, gababpentin, lyrica, nortriptyline- i could only tolerate balance-wise the last 2- but they didnt help the pain.
— Begin quote from “sarahd”
BB- I remember distinctly when topamax was helping you- it is definitely possible to have lyme and vm- maybe that is the case- in that event I would question getting off of the topamax altogether? either way i hope you stay well! … there was another member- mlnewman I think- who had the exact same story as you- she said for months how much topamax was helping her- then she changed and said it wasn’t doing anything and she really had lyme and now the antibiotics were helping her- I just don’t see how topamax could “mask” dizziness- maybe valium can but not topamax.
— End quote
Thanks Sarah. Totally agree on both points that you can have both diseases and also valium masking.
The thing is, when it walks like a duck, smells like a duck, looks like a duck and reacts like a duck, well, it is almost certainly a duck. From what I’ve seen in BB’s history the Lyme dx is all hanging on an Igenex test which has a history of unreliability – written up in the NYT and recently from members here who have found it is subject to cross-reactivity – in other words false positives. Taken together I would never risk taking multiple abx long term. In my mind it’s complete madness given there is no evidence for doing so. The blame lies squarely on these LLMD quacks taking advantage of someone trying to rein in a sometimes tough disease like migraine.
On another note, why is there such a thing as an LLMD in the first place? Why not see an infectious disease specialist who has been educated at university level? Why a self-proclaimed LLMD who is likely no more than a general practitioner with no specialist training? And can you imagine going to one and have him or her say “Oh no, your symptoms aren’t Lyme disease”. No doubt they whip out the good 'ole Igenex test to bolster the client base.
Scott, I beg to differ. My new duckfeather pillow smelled horribly of dead duck, but it was definitely a pillow :lol: It got returned!
While there are people with chronic unexplained illnesses, there will always be people ready to cash in on their problems. Many of us must have paid out a fortune in the past, I tried a heap of rubbish like brewing up strange twigs (herbs) to lying there with an egg on my naval. I also went down the “Lyme” route years ago, and although the Lymes Dr. had diagnosed me with Lyme Disease after a 5 minute phone call, as he did many many others, (and my head was telling me this could not be right) I still went on to pay more money for more weird and wonderful tests that the NHS could (for some reason) not do. I have since then, been told my symptoms are XMRV (another type of ongoing infection). I drove miles to have blood taken then this went back to America, needless to say, this hit a brick wall as well.
The difference is, I never go blindly down these paths, convinced “this one will be the answer to my illness” as its proved so many times that it “just isn’t”.
Christine
— Begin quote from “cmoc”
Scott, I beg to differ. My new duckfeather pillow smelled horribly of dead duck, but it was definitely a pillow :lol: It got returned!
— End quote
:lol:
Thanks Christine. So many people get sucked in when dealing with a disease like VM, especially when management is more difficult or a migraineur hasn’t identified a trigger (such as caffeine or painkiller overuse). You only have to take a look at the FB group and see the latest buzz word disease de jour – “Biotoxin Illness” if you can believe it. :roll:
I had to leave that Facebook group, i got too worried about all the things people were diagnosing me with all the time, didn’t help my anxiety!
Prof Steve Rauch sent me an interesting article today on Fibro. In his practice he notes that all patients with fibromyalgia appear to have migraine. It would be interesting to see what this sort of imaging study would show in a cohort of migraineurs or in people like us dealing with VM!
[size=130]Brain Scans Show Fibromyalgia Patients Process Pain Differently[/size]
S
Really interesting Scott. My friends friend has just come back from her Neuro and been told her Fibro and loss of balance are all part of her migraine, he has given her Topiramate. It will be interesting to see how she gets on.
Christine
Interestinger and interestinger. Especially that part about “all patients with fibromyalgia appear to have migraine.”
Maybe researchers and doctors are getting close to cracking that hard nut about fibro and all the similar syndromes. And patients will finally be freed from the devastating iatrogenic disease known as itsallinyourhead.
Nancy