Has Anyone Had Migraines Associated with CFS?

Discussion in 'Fibromyalgia Main Forum' started by quigmoore, Aug 8, 2005.

  1. quigmoore

    quigmoore New Member

    I am interested in hearing if someone has experienced chronic, disabling migraines that have been related to CFS? Is there information out there linking the two? If so, have you received successful medical treatment to keep them under control?
    [This Message was Edited on 08/08/2005]
  2. busybusymom

    busybusymom New Member

    Hi Quigmoore,
    I have a post about the chronic migraines. I think mine might be related to fibro (which still needs to be confirmed) as I have upper trigger point pain on a daily basis, which I believe is the CAUSE of the migraine. I have had disabling migraines for 1-1/2 years and still searching for a cause. Look up my post under my name (busybusymom) - you may find some answers there.

    I have read that you can get headaches with CFS - which I also have. I haven't been told that they are directly linked by the doctors I have seen.

    Do you have dizziness or balance problems with your migraines? It is constant with me, and I find that more disabling than anything else.

    I am taking Midrin and Excedrin Migraine. Everything else is too strong (I'm med sensitive). Sometimes they work and sometimes they don't. I have an appointment tomorrow with my nurse practioner and am going to ask her again about the migraines and CFS and fibro link. I'll let you know what she says!

    You are not alone!

    Jennifer
  3. elsa

    elsa New Member



    Hi...

    I never had a migraine in my life until FM/CFS came along. Pressure headaches and migraines are common place with these illnesses.

    The trigger points at base of skull is one cause.Chemical sensitivity that many of us develope with CFS/FM is another cause of migraines.

    I had suspected migraines ( no aura for me tho )and talked to my wonderful doctor about them. He had me come back in the next time I experienced it. It happened to be the skin care product isle in Walgreen's that set it off.( The perfume in the lotions....whew! )

    My doctor diagnosed migraine headache as consequence of CFS/FM. I have Axert to take for them if one hits.

    For prevention of them, I take singulair, en-tab (guai), and flonase everyday. The en-tab keeps fluid down in ear canal and singulair helps greatly with chemical sensitivities. Vitamin B-6 will also help keep fluid down.

    Hadn't had one in a while, so things must be working.

    Good luck,

    Elsa
  4. bpmwriter

    bpmwriter New Member


    i had migraines pretty frequently at the beginning of my battle with cfs/fibro. a neurologist first tried neurontin. i would still have the migraine episodes, it just seemed they weren't as severe. but still debilitating enough that we tried something else - lexapro. while i was on lexapro, my migraines stopped completely, though it's important to note, i also left my stressful job around the same time. i've been off lexapro for about 4 months and only had one migraine episode since then, on an airplane of all places. planes and migraines don't mix! if you are agreeable to trying an ssri like lexapro, i would highly recommend it. you'll also sleep better.

    eddie
  5. quigmoore

    quigmoore New Member

    Jennifer,

    Thanks for taking the time to talk with me. I've used the gammet of prescription drugs for the migraines with little success. I am drug sensitive and have a stomach that can't seem to tolerate something as mild as Tylenol.

    For about the past 4 years, Midrin has been my standby, but it causes me intense gastrointestinal problems. Additionally, it only dulls the headache, rarely if ever does it get rid of it. I can tolerate the pain. It is the "silent pain" or the visual disturbances that I wear me down. It is also frustrating because they cause my brain to shut down. I can only push myself for so far. If I get a migraine it usually lasts a minimum of 3 days. Nothing helps.

    I have recently tried the Excedrin Migraine, but it does little to help.

    I will appreciate hearing from you about what your doctor says.

    Thanks,
    Linda Quigmoore
  6. quigmoore

    quigmoore New Member

    Hi Elsa,

    Thanks for your input. Yes, I've found that fragrances and lotions can quickly bring on migraines. I have also found that congestion in my ears set off motion sickness which quickly turns into a migraine. I haven't tried Axert. Don't even know what it is. My husband is a pharmacist, so I will have him check into what it is.

    Thanks again,

    L Quigmoore
  7. quigmoore

    quigmoore New Member

    Thanks for your input Eddie. I have been on Lexapro in the past, but had a very high stress job, surrounded by fragrances when I took it. It didn't help me in any way that I could notice. Recently I went through a 2 week bout of constant migraine and my husband, who is a pharmacist asked me if I had some Lexapro left. He told me to take it until I ran out. I used it about 7 times and the headache did leave. Perhaps I should see my doctor about getting back on it. I never did notice that it helped me sleep though.

    I was diagnosed with CFS in about 1989, about a year after the migraine began. However, I am pretty sure that I had the CFS prior to that time. You are very lucky that you were only plagued with them at the onset of your CFS.

    Thanks again,
    LQuigmoore
  8. busybusymom

    busybusymom New Member

    Hi Quigmoore,
    I'm back from my appointment, and unfortunately my NP didn't have much to say about migraine and CFS relationship. I told her about the fibro trigger points and the migraine that develops when they flare, and basically because I am med sensitive, like you, we need to look "outside of the box" for treatment.

    What state are you in? I was given the name of a chiropractor in Missouri from my husband's aunt who is suppose to be a miracle worker for fibro (does something called crainosacral therapy and occiptal sacral therapy - this one sounds like possibly for headache...) and possibly migraine, and my NP gave me the doctor in Encino, CA (I live in Santa Clarita, CA) who specializes in combining traditional with non-traditional medicine, who is suppose to also be very good. Let me know if you would like those names.

    Also, ask your doctor for C-spine and T-spine MRI. Mine showed I have cervicothoracic scoliosis, and on further xrays of my lumbar, pictures also showed scoliosis. Don't know if this is a cause for the migraine, but I'm looking into it.

    Try putting food (if you can - I know it's hard when migraine is searing your brain) before the Midrin. I only get 2 hours max relief if it works - so I end up taking several a day - not good either. But what do you do....

    Hope you are headache-free today. I've got a killer one...

    Jennifer
  9. silky17

    silky17 New Member

    Lately I have been suffering with headaches on a daily basis. It feels as if my left eye muscle is being pulled fromn the inside towards my back of my skull. It is really dipilatating.

    I just saaumed it was part of fibro or CFS and the stress I have been going through trying to get my utilities paid. (((Help)))
    Has anyone felt these kind of headaches. I also was suspect to having glaucoma , I wonder if this is a sign.

    Have a good night all.
    Silky
  10. jitz

    jitz New Member

    I know how you all feel. It took four months before i could find anything to help and it nearly drove me mad. Although caused by fibromyalgia, like normal migraine, the headaches can be cause by a blood flow to the brain not working properly.
    I took alot of persuading by my dr but i now take Atenolol tabs (UK) and instead of being at migraine strength all the time, it now is just a mild ache.

    I hope this helps you and wish you all the best.
  11. quigmoore

    quigmoore New Member

    Hi,

    Thanks for the info. I've been down the scan route, in addition to chiropractic - all to no avail..

    Yes, food does help with midrin. My dr. prescribed 2 capsules at onset, 1 every hour after up until 6 caps per 24 hr period if headache isn't gone.

    Have to go!

    Hope you're better today.
  12. orbif

    orbif New Member

    Hi Quigmoore

    I'm new to this Forum but not to FM.

    My migraines are mostly triggered by the muscles at the base of the skull, but some foodstuffs can set them off. Also stress, of course. I have a medication called Sumatriptan (Imigran) which virtually always works, especially if I can feel the migraine coming on and take it before the actual pain starts. This aborts the migraine. If I take it once the pain has started, it's best if I can the have a nap of about an hour. If I can't have a nap, the drug can make me feel rather queasy, so I take a Stemetil anti-nauseant to avoid this. I think Imigran is quite an 'old' drug now, but it seems to work for me.

    Hope this might help.

    Kind regards,
    Orbif (Male, 59, fed up with FM!)
  13. beckster

    beckster New Member

    Hi Quigmoore.

    Migraines (chronic and acute at the same time if one can believe that) has been one of the worst symptoms for me with CFS diagnosis. It can also be quite indicative of lyme disease, so you really should find a "lyme literate doc" and get that checked out. After wasting 20 years of just palliative treatment, I got the lyme diagnosis and now am on a suitable treatment.

    But as for palliative treatment, which is also very necessary, no one should have to live with unrelieved pain, there are things that work, but they are different for different people. The important thing is your doc takes your pain seriously and keeps tyring differente meds until you/he find the right combination.

    What works best for me is a combination of cyclobenzaprine (fairly inexpensive in generic form), generic fioricet, and sometimes if these two dont work I have to add in tramadol.
    I have noticed docs dont like to prescribe the first two very much (especially the fioricet) which is often the most helpful!!!! (Go figure!!!).

    Let us know how you do . . . BEckster
  14. beckster

    beckster New Member

    Hi Quigmoore.

    Migraines (chronic and acute at the same time if one can believe that--yes VERY disabling) has been one of the worst symptoms for me with CFS diagnosis. It can also be quite indicative of lyme disease, so you really should find a "lyme literate doc" and get that checked out. After wasting 20 years of just palliative treatment, I got the lyme diagnosis and now am on a suitable treatment.

    But as for palliative treatment, which is also very necessary, no one should have to live with unrelieved pain, there are things that work, but they are different for different people. The important thing is your doc takes your pain seriously and keeps tyring differente meds until you/he find the right combination.

    What works best for me is a combination of cyclobenzaprine (fairly inexpensive in generic form), generic fioricet, and sometimes if these two dont work I have to add in tramadol.
    I have noticed docs dont like to prescribe the first two very much (especially the fioricet) which is often the most helpful!!!! (Go figure!!!).

    Let us know how you do . . . BEckster