Discussion in 'Fibromyalgia Main Forum' started by wildworld, Nov 12, 2006.

  1. wildworld

    wildworld New Member

    How many here started having them AFTER you got sick with CFS/FMS?

    My first symptom was a migraine that lasted almost 2 months. That is a very, very long time to have a migraine. I had to leave my job over it. Now, they are under control, and I know what triggers them, but I'm susceptible to them now, whereas I had only had maybe 2 or 3 before in my life.
    [This Message was Edited on 11/15/2006]
  2. CanBrit

    CanBrit Member

    I never used to have migraines let alone headaches. Now I get them from time to time.

    It's funny though, I didn't have them when I was first diagnosed with FM, but they started after I was diagnosed with CFS.

    Interesting huh!

  3. b~kay~b

    b~kay~b New Member

    i had them as a young teenager but i also started to have weird symptoms in my late teens weirder symptoms that i ignored in 20's and well finally gave into them because they got so bad. thats why i believe it is an inherited disease (genetics). symptoms slowly sneak up on you until one day its triggered by something, then it takes you out.
  4. Mini4Me

    Mini4Me New Member

    Yes, my first noticable symptom was migraines. That was about 10 years ago when I began menopause at age 46. I've slowly gone downhill since then.

    Am on disability and not working now.
  5. mezombie

    mezombie Member

    I started getting migraines in my teens. They were severe, but infrequent. When I came down with CFS, I started getting migraines much more frequently. Sometimes they lasted for days. It was awful.

    I went through all the migraine meds and nothing worked. Luckily, once Imitrex came on the market, I got some relief. Then I developed an allergic reaction to Imitrex.

    Now I get Botox injections about every six months, and I'm virtually migraine-free during that time! I resisted this treatment because it sounded so crazy, but I was getting week-long migraines and the pain was just horrible. With the Botox, I sometimes (but rarely) get mild migraines which I can nip in the bud with Excedrin Plus.

    I do wonder if CFS/FMS doesn't aggravate conditions we had prior to onset.
  6. b~kay~b

    b~kay~b New Member

    you know mine started to get worse too i would get them 2-3 times a week they lasted 24 hrs. and had the linger feeling. i would have one go away after 24hrs come back linger. i had some before where it actually didnt go away but lasted 4-5 days stayed in bed in the dark crying in pain and just wondering when exactly my head was going to explode. then i got luck didnt have one for a week so i kept track of it and estimated them 2-3 because sometimes i just couldnt tell what ended and what started. once i was on an antidepressant thing to try to prevent them i forgot its been so long, and then had these red capsules for onset take 2 then 1 every hour til i twent away. didnt help to well. i tried imitrex i had the migraine and my heart was in my throat. couldnt take that. so now i take topamax it was suppose to be for pain all over but it didnt help that but i notice it helped with my migraines i was thrilled i can tell when i should be getting one and its like it wants to come on but no migraine yeah baby. now i never heard of the botox thing if you told me that and you werent here on the support site id tellyou stop making up stories for youth syrum lol what doctor does that for you? how did you find out about that? and it works? wow! spill the details, there is this one wrinkle in the middle of my eyebrows i can do with out. lol but really how did you come across this?
  7. mezombie

    mezombie Member

    For b~kay~b (and others interested in this):

    I was referred to a neurologist who specializes in pain. He gave me Topomax (made me sleepy, no help with migraines) and tried some other treatments.

    When nothing worked, he told me that he had success using Botox for migraines. Apparently there are several small studies that document the effect of Botox on migraines as well as myofascial pain. He told me he had a lot of experience using it for pain relief.

    Did I think he was nuts? Definitely! I never in a million years would have Botox injected for cosmetic purposes! I mean, it's a poison right?

    Well, it turns out that it isn't poisonous in small quantities. And very little is needed for migraine prevention.

    The pain got so bad that I finally figured what the heck, why not try it? I really trusted the neurologist, and he clearly knew a lot about this and pain relief in general.
    So I had it done.

    I'm sure each case is different, but for me he injected the Botox in my neck and shoulder muscles and my temples. NOT in any wrinkles on my face, lol!

    It's not entirely clear how it works, but I know he successfully convinced an insurance company to cover it by citing research. I'm on Medicare, and they pay their share of it. It's no more expensive than other migraine meds when you consider how long the treatment works.

    If you're interested in trying this, please only have it done by a neurologist! It's important to have it done right.

    And, to be frank, I would recommend that anyone reading this try more conventional meds before trying this. But if nothing else works, I do recommend this.

    I've posted on this before, but always in response to a thread like this.

    Do you think I should post a separate thread on Botox?
    [This Message was Edited on 11/13/2006]
  8. mezombie

    mezombie Member

  9. victoria

    victoria New Member

    interesting that botox helps migraines...

    it really helped my husband with hemifacial spasming, totally paid for by Medicare too.

    So glad you found something to help you mezombie!

    I DO get really bad almost daily sinus headaches since my crash a few years ago, they increased in frequency every year and now holding on steadily... Sinusitis is also a common feature of CFIDS... there's no infections, just painful pressure that changes as I switch sides while sleeping and in whichever side the pressure is on, my upper teeth ache.

    I don't think it's migraines as I've tried imitrex, it actually caused me more pain. :( I almost wished it was as it seems perhaps a bit easier to deal with, been thru the mill with doctors... considering hyperbaric oxygen at this point.

    all the best,

  10. i started having migraines when i was 19.my mother was a suffer too.id be struck down with the migraine mostly at weekends,and my boss would say to me..if you take time off work with one more headache,your fired.you see often id be waking up with the migraine on a monday and still have to go to work with it.and keep nipping off to the toilet to vomit.

    anyway in 1993 my son caught glandular fever,and i dont know if i caught it too,but i remember that same year i woke up with a headache much more severe that migraine,and i didnt think anything was worse than migraine,but that headache was.

    id been running a tempreture and my husband was sick of my crying,as in his words...i got no sleep all night with you crying..so the next thing i know,he,s phoned the ambulance,and off im whisked to casualty department.

    a doctor looked into my eyes,asked if im a migraine sufferer,i said yes,but this is different.he says its migraine.im told to go home,but its the very early hours of the morning,im no my own (husband stayed at home) i have no money for a taxi,so im left to sleep in the waiting area of casualty,until daytime,and waited and hoped my hubby would come get me...sadly he did haha and im still living with the selfish p,g today.

    kind regards
  11. wildworld

    wildworld New Member

    is there anything worse than waking up with a migraine? THOSE are the ones that just don't seem to want to go away.
  12. especially when the vomiting comes along with the migraine.after vomiting about six times,my body would begin to tremble and become very weak,so id have to ask my boss if i could go home before i pass out.

    id be told to go to the first aid room at work,given two paracetamols and 10 mins later my body would vomit the paracetamols back up.in the 1970s people thought that migraine was just a normal headache.thank goodness it is now found to be a dibilitating illness.

    over here in the uk ,on our top news programe.it was said.doctors have found that people who have suffered from migraine headaches for many years,will have signs of brain damage.could that damage be the thing called fibro fog (short term memory)

    ive never been offered a brain scan,just told i have fibro/chronic fatigue syndrome.but in my heart,its the migraine brain damage thats giving me the memory problems.

    in the 1980s i was told that during a migraine attack the blood vessels to the brain,narrow.the blood cant get through properly and thats why id get that thumping headache.id be given drugs that widen the blood vessels,enabling the blood to get to my brain.

    but at a price?

    to then go onto develope ME/chronic fatigue syndrome and fibromyalgia.i believe migraines damage the brain.my mum who was a migraine sufferer went on to develope altziermers too,i pray i dont.she also suffered from fibromyalgia.

    kind regards

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