chronic headaches every day!

Discussion in 'Fibromyalgia Main Forum' started by shelley123, Apr 24, 2010.

  1. shelley123

    shelley123 New Member

    hi everyone, new to this, i'd like to know if anyone else out there suffers from severe headaches due to fibro myalgia. ive had FM for a long time and since the birth of my youngest daughter have had a really bad relapse . the headache though has only recently started although its been on and off for months the last two weeks it hasnt gone away and gets worse every day. ive had c.t scan and im waiting for m.r.i . it would just be reassuring to chat to someone who may be suffering in the same way!!!
  2. butterflydream

    butterflydream New Member

    i can relate to these headaches as having Fibromyalgia also.
    I also have the blinding migraines.

    Wondering as to what you have tried that may or may not have eased them.

    i do take the advil migraine, poke a hole in the capsul to begin working faster.
    i also have prescription Imitrex for the full blown migraine.

    Have you tried the advil migraine for your headaches ?
    Possibly Aleve as i do regularly.

    Sinus allergies can also bring on these headaches.
    I do use the Netti Pot when sinus begins.

    Good you're having MRi and testings .
    Wish you well

  3. shelley123

    shelley123 New Member

    thanks for replying! have to be careful what i take because i also have irregular heart rate! so at the moment i take tramadol, carbamezapin and amitriptyline. nothing works its just geting worse every day. its like a massive pressure! sometimes a stabbing pain that makes me feel im going to fall over. i,m at the end of my tether!
  4. terrilyn

    terrilyn New Member

    A few days ago I posted my migraine problem, which seems to be related to my CFS -- but I also have Fibromyalgia, and the days when my CFS and FM are both raging are the worst. Except when the migraines come along too.

    Here's what I posted before: "In the mid 1980s, I began to have a daily hemiplegic migraine (hemiplegic meaning it went down the left side of my body, from the top left of my skull straight down to my left toe. All of it felt like meat roasting on a spit). Still, I went to work this way for almost twenty years, using mind over matter and prescription drugs. And of course I went to many headache doctors. None knew what to make of the strangest aspect of my headaches--I had one every day, UNLESS I had the flu or fever. If I had the flu or fever, the headache immediately turned off, just like a light switch. And, as soon as the flu/fever left, the headache switched on again, just as fast.

    By the mid-90s I was developing other symptoms (nausea, vertigo, strange weight loss, exhaustion) and I was diagnosed with CFS in 2002. Since 2005 I've been bedbound most of the time. But there's one nice change ... because I usually run a fever, I usually don't have a migraine. Still, they return--and much, much worse than ever--if the fever runs a little lower or leaves for a day.

    Has any CFSer on this board had a headache disorder that is anything like this?"

    So that's what i wrote. But I thought of you when I read your description because the migraine has been with me every day since I posted. It has been attacking with a massive stab at the top of the skull, over and over, several times a minute. The stabbing can really drive you over the edge, can't it? For that particular symptom, migraine's "silver bullet," imitrex, really does help me. And though it makes me, ahem, "aromatic" (as well as unpresentable) generous use of tiger balm on my scalp and neck does wonders. (To get through my hair, it has to be the liquid t.b., not the rub-in form.)

    I can't take advil due to recent stomach problems, but when I could take it, it helped a bit.

    I'm not sure if you have time to get a great massage ... and for me, massages can be painful with Fibro .... but even a neck rub from someone else, and an hour of calm (if you can find it, with a small daughter to care for) can help.

    At any rate, you are not alone, I assure you.
  5. Janalynn

    Janalynn New Member

    Hi Shelley,
    Yes I can relate. I sometimes get such horrible headaches that they make me nauseous, however they are not actually migraines. The only reason I know is because I was given migraine medication that only works if it's a migraine and it didn't. I had a CT scan when my headache was so bad I really thought that something in my head was going to burst. A demerol shot helped to some degree after 5 days.

    I've had to take Topamax. Originally given to people who suffer from severe headaches, however I was given for my Fibro. The ONLY thing that helps break my headache if I catch it early is a half of a Klonapin. I discovered that accidentally. When I told my Dr. he said it makes sense since it relaxes everything. When I feel a bad headache coming on, I talk my half and it really helps me. Taking a regular muscle relaxer does not have the same effect at all.

    Headaches can be so debilitating. They are just horrible, so I can certainly sympathize. I hope that nothing is found on your MRI and that you can find something that works to relieve your pain SOON!
  6. justlooking

    justlooking New Member

    My very first symptom was a headache that lasted 7 weeks straight. Not a little headache, but one where I was hospitalized because I was so debilitated. Then it went away, for a day or two and started again, lasting weeks. I went through this for years. The body pain and fatigue followed a year or so into it. Since this happened in 1995, I have had a headache EVERY day, since.
    I have migraines too. They generally last about 3 days at a time, then go back to the normal headache I have 24/7.

    But back to you. First you need to check on the meds you take. Tramadol is notorious for causing headaches. The Amitriptiline can also cause headaches (it was the first medication they put me on when my headaches started) and it didnt' help AT ALL.
    Check on the side effects on the meds. Also birth control can cause or add to headaches.
    Ask for a pain reliever that specifically helps with headaches.

    Personally I can't take the Triptans, like imitrex because it gives me terrrible heart palplitations. So I take Fiorinal with codeine, which has caffeine, aspirin, butalbital (barbiturate) and codiene. it works well and I take it every day to keep my headaches under control. I still have headaches, I still have migraines, but they are more in control now.

    Good luck and I hope you find relief. Sometimes you have to try a lot of different meds to find what works for you.
  7. shelley123

    shelley123 New Member

    hi, thanks for replying. I'm so glad its not just me! although i am sorry your also suffering. i keep thinking there must be something serious going on in my brain becausr the pain is too bad to be just fibro. it makes my shoulders and arms feel heavy and achy. do you get that? i know the meds can cause headaches its a vicious circle. they worked for years but i stopped them all to get pregnant with my daughter whose now 18months i'd been pretty much well for ten years but after the baby came a massive relapse that i really wasnt expecting! so ive just been put back on what worked before! but i'll keep trying thanx . its good to know i'm not alone . thanks shelley
  8. shelley123

    shelley123 New Member

    hi, thanks for replying. I'm so glad its not just me! although i am sorry your also suffering. i keep thinking there must be something serious going on in my brain becausr the pain is too bad to be just fibro. it makes my shoulders and arms feel heavy and achy. do you get that? i know the meds can cause headaches its a vicious circle. they worked for years but i stopped them all to get pregnant with my daughter whose now 18months i'd been pretty much well for ten years but after the baby came a massive relapse that i really wasnt expecting! so ive just been put back on what worked before! but i'll keep trying thanx . its good to know i'm not alone . thanks shelley
  9. terrilyn

    terrilyn New Member

    Justlooking, Im so glad to read that someone else uses Fiorinal with codeine. Of course, I eventually had to prove to doctors that I wasn't getting rebound headaches from its use (which I did, by going without it for 3 agonizing months, with no change in the daily headaches) . These days, due to my stomach problems, doctors want me to take as little aspirin as possible and suddenly look at my Fiorinal with favor. For some reason its cocktail of ingredients is a huge help. It kills the headache for a little while, or at the very least dulls it. It keeps me from going insane, which these days feels like a pretty good deal.

    Shelley, there is something out there that will work for you. I can't imagine caring for a child while suffering the vicious pain your headaches give you. On the other hand, I imagine that looking at his/her sweet face might bring a huge sense of peace.
  10. justlooking

    justlooking New Member

    I hear you on convincing Drs about the rebound headaches. I went through the exact same issue a couple of years into my headaches. They took me off of all meds, had to also do an elimination diet, no caffeine, no sugar, etc.
    Nothing made the headaches stop so they put me back on the meds to at least make life less painful.
    Sorry you have the same problem.
  11. Pebbles730

    Pebbles730 New Member

    I don't know if this will help but when I first got the Fibro my Dr. also gave me the tramadol. It took me months to realize that I was getting those horrible headaches from the Tramadol. They were mind crushing and I was living on advil the whole time I was on these. When my doc switched me to a different med along with the amitriplyne, the headaches disappeared.
  12. wellerval

    wellerval New Member

    Hi, I know from extensive research that magnesium deficiency could be causing your irregular heartbeat and your headaches. If you have chronic constipation, that could also be caused by magnesium deficiency. It is difficult to test for this, as serum magnesium is not reflective of your intracellular levels. Try soaking in Epsom Salt (Magensium Sulfate) bath for 20 minutes with 2 cups of Epsom in the tub. Your body will absorb some Magnesium from the bath. I would do this before bedtime, as you will feel like jello afterwards. There are labs that do intracellular testing for vitamins and minerals. One is Spectracell. I am not endorsing this lab and have never used their services, but just wanted to make you aware there are labs that can test for magnesium levels.
  13. Nanie46

    Nanie46 Moderator


    Anyone with a diagnosis of fibromyalgia should consider that the actual CAUSE of their symptoms is one or more of these infections: Borrelia burgdorferi, babesia, bartonella, ehrlichia.

    They are often found together and can cause chronic headaches among other symptoms such as muscle pain, fatigue and sleep problems.

    My daughter has borrelia burgdorferi, and she had a bad exacerbation with the birth of her 2nd son.

    Here is some info...

    symptom list p 9-11, info about babesia, bartonella, etc on p 22-27...

    also read this with an open mind.....think of your FM as a symptom, not your final diagnosis...

  14. Honora88

    Honora88 Member

    I was able to get off all supplements and then my headaches were gone. I found there was a direct correlation.
  15. monica33flowers

    monica33flowers New Member

    I have a headache every single morning I wake up. Has any dr. looked at your neck? I have bulging, herniated and fused discs in my neck. The surgery for the fusion was suppose to stop the headaches and stop the arm, leg and shoulder pain which also gives me nerve pain which is like pins and needles throughout my neck, shoulders, arms, hands and legs. When the pain gets really bad I can't you have that sort of pain?

    I'm also a migraine sufferer and I have 1-3 each week. But those are completely different headaches.

    I have found taking two lorazepam really helps but as soon as it wears off the headache is back.

    I've also been given Midrin to help with these daily headaches and sometimes it helps sometimes it doesn't.

    Be sure to have your neck checked out and also maybe sinus, ear, throat or allergies.
  16. hi shelley123

    i also used to get chronic headaches, but they seemed to be after resting over the weekend (after my part time job),then i would get the headache monday,and it would turn into full blown migraine,so i,d have to be off work.

    i have fibromyalgia and CFS (long time sufferer).

    anyway after going to my doctor and saying i get what they call yuppie flu,everytime i get this headache,his conclusion is...

    ive got enviromental allergies,and have a sinus infection,that triggers migraine,coldness and fatigue.

    i was given a anti biotic to get rid of the sinus infection.

    i was also given a anti histamine tablet called FEXOFENADINE 120 MG,one taken at night.

    after being on it for just one week,my headaches stayed away,im so happy about that,and have started my second months dose now.

    i was also given a migraine medication,that i,d been on many years ago.

    this is called SUMATRIPTAN 50 MG.

    one to be taken at onset and repeat two hours after, if needed.

    last week i got a weather related migraine,one hour before a thunder storm came over my town.

    i could tell it was migraine as i felt sick,had severe back of the eye pain,and a weird feeling that was at the front of my head,and went all the way over my head into my neck.

    i took one sumtriptan tablet, and put cold wet flannel on my head.then slept on sofa for two hours.

    when i woke up the migraine was gone,as was the thunder storm.

    i was able to go to work later that day,with no lingering problems like the shakes and i was well happy.

    i hope you find something to help you with your chronic headaches.

    take care,love fran.
  17. Defender

    Defender New Member

    YES. I've NEVER had migraines until this year. I've been diagnosed with FM for three years by two different rhumetologists. My first lasted for 11 days. I was given Ultram. Didn't stop. Went to the ER on the 12th day. Gave me an IV of the same thing. Nothing. Next day I saw my opthamologist because I was also having opthamolic migraines...he sent me to the ER to get a CAT scan. Next morning I saw my PCF and she gave me a shot of Ultram and a prescription of percocet. stopped. They flare up every three months or so when I am under tremendous stress and this is how I cope with it. I don't like to take drugs (prescription narcotics) but I hurt so fiercely I didn't care. I thought I was going crazy. I didn't know what it was - well now I do and this is what I have to do to stop it. I am so sorry you have them daily. The flexaril truly seems to sort of keep them abay for a few months. I hope you and your Dr. can find something that will give you some relief and a plan to stop them. Good luck.
  18. Defender

    Defender New Member

    You have your hands full.....I forgot to tell you - I have tried to Klonapin 1/2 of one and it does in some off way work. I hope your MRI is helpful to you in finding a solution. What works for one of us might not work for another in stopping the unrelenting pain. Good luck to you and please know you are NOT alone at all.
  19. FM58

    FM58 New Member


    I certainly can relate to what you are going through. I use a neurologist that specializes in the treatment of headaches. It is quite difficult to find a good one. I would suggest contacting a major teaching university & calling their physician referral line & asking for their list - or even see if they have a headache clinic. Certainly starting with a headache neuro is the way to go. They are very knowledgeable & will have many variations of ideas to try for any patient.

    I use a whole combination of preventative meds, both prescription & herbal. Please be very careful of what you are taking to relieve your headache, as a previous poster mentioned you may be suffering from "rebound headaches". Using preventative meds is quite important when you are dealing with more than 3 headaches in a month, so what you are describing fits that bill. It may take some time to figure out the right dosage that will work for you & it may need to be "tweaked" now and again, however preventing a migraine is certainly a much better option than dealing with one daily.

    I also see a pain management specialist who is using some techniques along with the headache neuro, they are co-treating my symptoms. Hopefully it will be a success in the long run. So far, so good : )

    Best of luck Shelley. I hope you can find a doctor that will work with you & resolve your headache situation.