Hi All,
Christine sent me this article this morning:
[size=130]Is Chronic Fatigue Syndrome (ME/CFS) a Form of Migraine?[/size]
“Similar patterns of gray and white matter abnormalities and altered brain energetics in Gulf War Illness (GWI), CFS, FM, and migraine suggest that common central mechanisms may contribute to the type of headaches and cognitive impairments perceived as ‘brain fog’.
http://www.cortjohnson.org/blog/2013/08/09/is-chronic-fatigue-syndrome-a-form-of-migraine/
Dr Silver certainly thinks so. I recall he said this in one of his audio presentations which I listened to from here. He didn’t go into a lot of detail but a lady questioned him about it and he said he would speak to her in more detail at the end.
VERY, VERY interesting. Thanks for posting this, Scott.
It’s usually just covering up an underlying infection … They are not real diseases
BeautifullyBroken
Are you still on topamax 150mg or have you quit and now treating lyme instead of migraine?
— Begin quote from “BeautifullyBroken”
http://lymedisease.bravepages.com
It’s usually just covering up an underlying infection … They are not real diseases
— End quote
I see you’re still drinking Lyme Kool-aid. What else is not a real disease?
Hi Nabeel,
Hope you are well! I am still taking 50 mg of Topamax and 3 different antibiotics right now. I am doing better then ever!!! I feel my life slowly coming back to me… :0)
And Scott if you want to call it lyme kool aid… Sure, what the hell!
Everyone is entitled to their own opinion and that’s mine. You voice yours all of time… Just stating mine.
Lisa
Lisa,
Having an informed and smart opinion is one thing but let me be clear: I do not want to be reading your nonsensical posting like this on the forum – i.e. that illnesses such as fibromyalgia and chronic fatigue syndrome are all Lyme-based diseases or that last intellectual zinger from you on this back in August when you told us that MAV and MddS was all Lyme disease. You may as well be throwing a handful of shite in people’s faces whose lives are really badly impacted by these problems looking for real solutions. Feel free to indulge in your Lyme Kool-Aid drinking binge but keep the junk information to yourself or leave it on your personal blog.
If you want to report on your own Lyme treatment that’s fine. I put your initial thread on this in the Announcement section of the Other Illnesses forum for that very reason. You haven’t added to it since. Not once. Use it. You might even do something really intellectually outrageous and tell us how your daily Topamax and Klonopin routine is working for your misdiagnosed migraine problem.
S
— Begin quote from “Jem”
Dr Silver certainly thinks so.
— End quote
Hi Jem – there’s one interesting case study Silver presents about a 21-year old girl diagnosed with ME/ CFS at age 13. She exhibits the following symptoms (sounds exactly like me actually). Note the daughter’s remark on the migraine dx – ludicrous she says. Not the first time we’ve heard that on this forum.
Longstanding symptoms of “ME” (diagnosed age 13)
– Severe disability with fatigue & very poor exercise tolerance
– Neck and low back pain
– Dizzy spells – lightheaded with depersonalisation
– Dizzy +++ with visual stimuli – road markings, escalators
– Insomnia – wakes 3x between 2 and 6 am
– Irritable and emotional with low mood
– Forgetful, word-finding …….difficulties, comes out with the wrong worms
**Headaches **
– severe headaches 1-2 per month, particularly week before period
– Mild headaches between – tight band around head, as if wearing a hat
–Subtle phonophobia and photophobia
– + very mild nausea
Caffeine intake: 2 cups of tea per day, occasional chocolate
Initial thoughts after first consultation:
Mother told her that “she” had migraine, her daughter “definitely did not” and that my diagnosis was “ludicrous”
Patient had initially been very sceptical and did not think anything other than headaches might get better
Management
Stop all caffeine + all painkillers
3L fluid / day,
avoid missing meals,
set 9 hours in bed with same bedtime and no lie ins
Preventative: Dosulepin (dothiepin) 25mg 3 hours before bed
increase by 25mg each 2/52 according to benefit and side effects
Carried out plan:
Taking only 25mg dothiepin (prothiaden)
1 “migraine” headache in 3/12
Now completely headache free 28-29 days per month
Outcome:
Feels “brilliant”, “totally back to normal but a bit unfit”
All associated symptoms fully resolved: Neck pain, back pain, mood change, concentration, emotionalism, insomnia, visual vertigo, panic type symptoms
— Begin quote from “BeautifullyBroken”
Hi nabeel,
Hope you are well! I am still taking 50 mg of topamax and 3 different antibiotics right now. I am doing better then ever!!! I feel my life slowly coming back to me… :0)
Lisa
— End quote
Hi Lisa,
I don’t really follow the Lyme discussions but I notice your signature says you have Lyme, not MAV. I have to wonder then why you are taking Topamax and Klonopin. What am I missing?
Victoria
That’s interesting Scott. I know that during the first year I had this I bought books on Chronic Fatigue Syndrome and researched into something called the Perrin Technique for ME/CFS because I felt so totally exhausted. My mum tutors people who are off school due to illness and many of them have CFS and she told me that, whilst dizziness was not always mentioned by them, some of her pupils did have dizziness. I always had doubts about mine being CFS because of the dizziness which I did not think was a feature of CFS and because mine was brain fatigue rather than muscle fatigue but I definitely think there could be a link with migraine. I have since read that migraine can cause bad fatigue and lethargy in itself.
Lisa it’s great you are doing so well 
I hope you have found the answer for your problems. How come you think Lyme is to blame for all these conditions though? I don’t really understand why conditions like migraine can’t exist without Lyme? What about people who have symptoms but who have had negative Lyme tests?
— Begin quote from “Jem”
What about people who have symptoms but who have had negative Lyme tests?
— End quote
Or the people (at least three here now) who were Lyme positive but realised it was a false positive test.
Victoria,
I take topamax for the headaches I get from Lyme disease but I am able to take such a small dose now. Before I had to take 175 mg to control it. Once I started abx I went down to 50 mg and plan to continue to move down to 0 mg. I take klonopin to sleep.
And Scott I have nothing to say to you … Not worth my time
Jem,
I don’t believe that Lyme disease is the reason for it all no. Just the diseases that are not able to be tested for. I highly recommend looking into it. I wish you the best as I will no longer be posting on here xo
I have had fibromyalgia since 2008- I have been treated with both oral and IV antibiotics and they make no difference. I do believe I have fibro- however I think it can be triggered by lyme- this is what most likely happened to my mother.
Lisa- I am confused because I remember a long time ago your posts about topamax and how you said it was significantly helping your dizziness- I know eventually you started having problems again- but if you only had lyme, how would topamax have helped you? How would a seizure drug affect a bacteria based illness?
How long have you been on antibiotics for now? How long did it take for you to see a difference?
In any event I am glad to hear you are feeling better and are getting good treatment!!!
Sarah,
Initially, I believed I had Mav because I did not know about Lyme disease. So I trialed topamax. Yes, it made me feel better and I could function, but I still was living life at about 60/70%. I never got above that mark even with going up on the medication. Lyme disease causes headaches and dizziness. Topamax is a drug used to control headaches and dizziness. I feel as though it helped me but only masked the symptoms which where being triggered by the Lyme disease and coinfections. I am going on month four of my antibiotic treatment and I feel great … Not 100% yet but getting there! Doing things I never thought I’d do again! It is important to know that using only one antibiotic to treat Lyme disease and it’s coinfections will not work … You need to use multiple abx at a time and for long periods of time based on your symptoms.
This has worked for me. I am doing better then ever! Will it work for everyone on this forum!? No … But I urge everyone who has been ill for a long time to look in to it as the symptoms overlap.
Wishing you the best,
Lisa
Lisa,
I spent 30 minutes going through your history here on mvertigo and your case reads like a who’s who of vestibular migraine, someone who has had great success with Topamax, a benzo, and lifestyle mods. Why you have completely fallen into the black hole that is the world of Lyme nuttery beggars belief. Was this a result of MAVLisa converting you for weeks on end? Just look at some of your history:
You said one year ago: “Prior to the cruise, I suffered from headaches/migraines. I had one vertigo spell which lasted 3 days and went away in 2008 … I had all the tests MRI, CAT Scan, VEMP, AUDIO, Blood tests etc - all normal.”
And then you began Topamax after you were diagnosed by a migraine specialist.
“It brought me relief to finally find a doctor who knew what I was going through and to hear him say that with the right meds and diet I could go into remission … My ear fullness has pretty much vanished – one week after starting Topamax …Valium worked for me in the beginning too … Prior, to Topamax, most, if not all of my days were spent in bed. The dizziness and disequilibrium was awful.”
Nov/Dec 2012: “Topamax has helped me so much and I hope it continues! … yes I hit the jack pot [with Topa]… it was the first med I tried… it was a long hard road… but in the end it was worth it. … I have A LOT of GOOD days. My life is SO much better. SOMETIMES, I even forget I have MAV! (This is recently). Topamax is wonderful."
“Has anyone here developed IBS as one of their MAV symptoms? In Feb 2012, I constantly had IBS, had all the tests done… everything was normal.”
The above is a textbook vestibular migraine case study! I wonder who in your family has migraine as well. :?:
— Begin quote from “BeautifullyBroken”
Sarah,
It is important to know that using only one antibiotic to treat Lyme disease and it’s coinfections will not work … You need to use multiple abx at a time and for long periods of time based on your symptoms.
— End quote
There is so much about this statement that is ill-informed and just plain wrong, not at all backed by evidence-based science and fits right into the realm of pseudoscience, no doubt being pushed by Lyme Literate Line-My-Pockets Physicians at your expense. And all because of another positive Igenex test that is probably as useful as a roll of toilet paper and a distant memory of some flea bites. Time for another reality check:
There is no credible evidence that Lyme disease can be transmitted through air, food, water, or from the bites of mosquitoes, flies, fleas, or lice. A tick must be attached to you, sucking your blood for 24-36 hours before there is any hope of transmission.
The duration of initial antibiotic therapy for Lyme disease has been studied in several situations and does not correlate with any differential in the resolution of these chronic, subjective complaints. Prospective studies of early Lyme disease have failed to find a benefit associated with longer courses of antibiotic therapy.
Four double-blinded randomised controlled trials that show that there is no effect with long term antibiotic use compared with control groups. This is the most rigorous study design available.
— Begin quote from ____
A. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease.* N Engl J Med*. 2001;345 (2): 85-92.
B. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
C. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
— End quote
Antibiotic misuse, sometimes called antibiotic abuse or antibiotic overuse, refers to the misuse or overuse of antibiotics, with potentially serious effects on health. It is a contributing factor to the creation of multidrug-resistant bacteria, informally called “super bugs”: relatively harmless bacteria can develop resistance to multiple antibiotics and cause life-threatening infections. This is a MAJOR problem worldwide and this regimen you have been put on by some LLMD is only contributing to the problem and for what?
There are significant risks using antibiotics long term when they are not warranted. This was recently written about in Nature (2011). The lead author Blaser “…permanent changes to our protective flora could have more serious consequences.”
— Begin quote from ____
Topamax is a drug used to control headaches and dizziness.
— End quote
Topamax is a drug used for epilepsy and migraine and not to treat “Lyme disease associated headaches”. I suppose you’d call it LAD or LAH? Totally absurd. Klonopin, a benzodiazepene, is also another highly effective drug class for VM. Topamax often takes many months for people to realise its benefits which you have seen from the outset.
And finally from one of your peers here at the forum: http://mvertigo.cloudapp.net/t/a-word-of-warning-about-lyme/7329
I really find the idea in this article fascinating–that fibromyalgia and similar syndromes, and migraine, might all have in common the “central nervous system hyperactivity” or “dysregulation.”
My mother (now 83) has a long history of migraines (though never dizziness) and all-over pain, diagnosed as classic fibromyalgia in 1992. Doctors had her on painkillers including oxycodone for years and years. Then a couple of years ago some smart new doctor tried Cymbalta, then something else, and finally Effexor–and the Effexor worked like MAGIC on her fibro pain. Her oxycodone use dropped by probably 25% immediately, and then she went off oxycodone altogether!
Personally, I believe that the Strattera (norepinephrine reuptake inhibitor) that I took for nine years helped my longtime achiness a little, which I attribute to a mild case of fibro (never officially diagnosed, but I suspect it and doctors have certainly mentioned it as possible). I’m on Effexor now and it might also be helping, but I think I need to raise the dose now. Experiment still in progress.
Most interestingly, I noticed that on days when I took more caffeine in the morning, my achiness (as well as brain fog) were very noticeably better.
And I read somewhere a theory or observation by some fibro doctor (can’t remember who or where) that stimulants do help fibro.
My wild speculation is that stimulants, or at least some types, kick up the brainstem in some way, help it process the pain and attention signals better or more correctly. All I know is, they make me feel better.
I also feel better in head and body when I get “hits” of cortisol from low blood sugar and circadian rises in cortisol (such as at 4:00 pm).
I do know that’s at odds with what most migraineurs experience, that caffeine or stress hormones make them worse, but it sure seems to make my achiness and brain fog better.
Well, I’m wandering here. But I do find that idea of incorrect processing of sensory signals being a basis for both migraine and fibro, etc., to be a very intriguing idea, and I hope we will hear more about this.
Nancy
— Begin quote from “Nancy W”
My mother (now 83) has a long history of migraines (though never dizziness) and all-over pain, diagnosed as classic fibromyalgia in 1992. Doctors had her on painkillers including oxycodone for years and years. Then a couple of years ago some smart new doctor tried Cymbalta, then something else, and finally Effexor–and the Effexor worked like MAGIC on her fibro pain. Her oxycodone use dropped by probably 25% immediately, and then she went off oxycodone altogether!
— End quote
That’s an amazing story – and a great case study. 