Who else has a constant localized pain in the head?

Discussion in 'Fibromyalgia Main Forum' started by Ales, Jul 29, 2008.

  1. Ales

    Ales New Member


    my CFS started suddenly more than 10 years ago with the classic symptomatology, i.e., it looked just like the infectious mononucleosis. For at least 8 years I have a constant pain and/or feeling of pressure localized in the left part of my head, somewhere between the parietal and temporal brain lobe. This pain/pressure has varying intensity but never stops entirely. I am quite sure that all my CFS/ME related problems (mainly neurological and in the past also immunological) stem from this particular apparently pathologically affected site of my brain. Five years ago I started to take the antidepressant citalopram (Seropram, Celexa) and the improvement was dramatic but this antidepressant therapy (which might be effective due to the well known property of some antidepressants to work as potent negative brain immunomodulators in the sense that they suppress the central proinflammatory cytokines and vice versa) didn't lead to full recovery. Since then I have tried about 95 neuropharmaceuticals (antidepressants, anticonvulsants, neuroleptics, nootropics, stimulants,...) but only modafinil (Provigil) seems to have a curative potential in the long term.

    Ales, Central Europe
  2. JohnThreeSixteen

    JohnThreeSixteen New Member

    My FMS started with a constant headache. It was in the occipital nerve region and it never stopped. But antidepressants worked well for me.

    Once, I had a constant headache from stopping an antidepressant suddenly.

    Other than that, I don't know what to tell you. Have you had an MRI or CT scan? You seem to have a good knowledge of cytokines, a/d and chronic pain.
  3. lillieblake

    lillieblake New Member

    I have head pain (tightness) mostly in the left side of my head.

    I also have DDD of the cervical spine, and not sure if that is contributing to the pain.

    But caffeine helps. If I get a pepsi, the tightness goes away.

    Hope this helps.

  4. pasara

    pasara New Member

    This may be helped by classical osteopathic treatment. There are muscles starting in the back and neck that connect to the back of skull and when tight or out of balance cause a feeling of pressure, tightness or pain. This can then also affect the flow of cranial sacral fluid. It is beyond just tight muscles though. It throws all sorts of things out of whack.
    My osteopath has been a godsend!
  5. coolma

    coolma New Member

    My specialist swears DDD causes FM. And I have been treated by her for over 20 years, 13 of it on disability. As I followed her council, what she has told me has proven itself correct. Neck spasms, degenrated discs, can cause horrible headaches and head and neck pain. Some soft tissue release works great for these headaches, but do NOT EVER have your neck adjusted by a chiropractor if you have neck DDD. You will be in agony. Good luck.
  6. Ales

    Ales New Member


    I had MRI and SPECT tomography imaging of my brain. The MRI scan was generally normal but SPECT revealed many large areas of hypoperfusion in my brain comprising up to about 80% of the brain volume. My neurologist is an eminent expert he was the Minister of Health and he considers my spine to be normal. I speculate that my localized pain/pressure in the head could be due to an intracellular brain tissue infection perhaps by HHV-6 but I would like to know if it is possible to have infected only some particular region of the brain. The therapeutic effect of SSRIs would then correspond with the IL-1 etc. releasing properties of HHV-6. The German enzyme product Wobenzym manufactured by Mucos also helps me a bit sometimes. I think for me the best way to use modafinil is to take large doses for, say, three days and then to omit it for a day or so. I use 100-200 mg of quetiapine (Seroquel) when I am taking large doses of modafinil to be able to sleep.

    Here is something about the neurogenetic properties of caffeine as found out by Israeli scientist, which may be why the Pepsi helps you a bit:

    The scientists grew rat neurones in the laboratory and then added caffeine. The brain cells, called dendritic spines and taken from a region of the brain called hippocampus, grew by 33% and new spines formed. The cells returned to their original shape after an hour or two.
  7. Waynesrhythm

    Waynesrhythm Member

    Hi Ales,

    Headaches have been a mainstay of my health picture since experiencing a head injury over 40 years ago. Some of the things that helped me the most:

    1) Doing an AtlasProfilax procedure to align the atlas. I had done extensive chiropractic and later upper cervical chiropractic prior to this, but got the most beneficial results from the AP.

    2) I had an infected root-canaled tooth extracted about three years ago.

    3) I had a specialized nasal balloon treatment done. This expanded the sinuses, cleared out a low-grade infection, but more importantly, released my locked cranials. Followup cranial/sacral work helped as well.

    4) Staying within my energy envelope. One of the first symptoms of overdoing things is me getting one of my headaches.

    5) Being careful about the foods I eat and which ones I'm sensitive too.

    6) I recently purchased a microcurrent device called Alpha Stim which can modulate brain activity and be very effective for depression, anxiety, migraines, etc., just about anything that is neurally mediated.

    My headaches over the years, using the above strategies, have reduced my chronic head pain by about 80-90%. I still have to work out certain areas around my eyes several times a day, but things are much better than previously.

    Best to you as you try to find some effective answers for yourself. Sounds like you're pretty relentless in exploring anything that may be helpful. I applaud this type of tenacity.

    Regards, Wayne
  8. Malcolm82

    Malcolm82 New Member


    I have headaches very frequently since I developed CFIDS.

    They usually are centered at the right side of the bridge of my nose and radiate from there. In fact, I have one right now!

    Sometimes they are on the left side, but not usually.

    They started out as what I found later to be termed as "cluster" headaches-the kind you get several days in a row, then have a "break" for a few days, then come back for several more days.

    Since I started being treated by a good CFIDS doctor in January of this year, the frequency of the headaches has reduced to one or two a week, and they are hardly ever on back to back days anymore. I don't know, however, what part of the therapy might be responsible for this. Maybe it is a cumulative effect from all of it.

    However, I have varying amounts of heavy "pressure" in the top half of my head just above ear level constantly. It feels like a balloon is being inflated inside my head and pressing against the inside of my skull and on my brain. It seems to vary in intensity in direct proportion to how fatigued I feel. This has not changed with therapy.

    Does anyone else have this pressure without headaches?

    I am also on Citalopram, have been for over a year, started because of anxiety over the degradation of my abilities I was experiencing. Have next to no anxiety and depression since about 2 weeks after taking it. Have just been in a constant diagnostic mode trying to do whatever it takes to fix this(like I always did with machines)!!!


  9. Malcolm82

    Malcolm82 New Member

    I forgot to mention I have been on Provigil, first after being treated with CPAP for Obstructive Sleep Apnea, which I'm pretty sure got me alert enough to be able to go back to work in 2005. I was able to stop taking it about 3 months after.

    When I started to develop what I later found out were serious CFIDS symptoms in about July of 2007, my doctor started it again at 200mg/day to try to counteract my daytime sleepiness and fatigue. Worked for about a half a day. He got my dosage up to 800mg/day with no effect. Then he added 40mg/day of Adderall (amphetamine salts) to that, still with absolutely zero effect. That's when he realized that with a heavy dose of stimulants combined with a serious dose of uppers which would have a normal person flying high and I was still almost dead to the world, he was out of his league in trying to treat me and gave up!!!!

    Cheers Again!!!!

    [This Message was Edited on 08/05/2008]
  10. jinlee

    jinlee Member

    Except mine is caused by my husband! Sorry, just could not help but be sarcastic today.

    I am sorry for your head hurting. Mine comes from tension in my neck, which goes over my left head and stabs me just to the right of my left eye, like an ice pick, also hurts behind my left ear, deep inside. I have just kind of gotten used to it most days.

  11. munch1958

    munch1958 Member

    I've been on a low dose of heparin 2X per day since Oct 07 for hypercoagulation. I believe it's from chronic infection. In my case, it's Borrelia, Babesia, Bartonella, EBV, CPN and Candida.

    I have found this to be the ONLY med that gets rid of this daily headache which I've had for over 25 years. There's about a 1-2 hour window before each shot when the headache comes back. Then I do the shot and the headache is gone in 10-15 min.

    I was only supposed to be on heparin for 9 months but find if I don't use the med this headache comes back. I'd rather have 21 hours a day without the headache so I keep on with the heparin.
  12. peterclones

    peterclones New Member

    Ales, I have the exact same pain you have on the left frontal side, and around the eyes. I believe some CFS experts have said this is from a brain injury caused by CFS. About a year ago I finally found some relief taking a daily small amount of Rivotril here in Canada, called Klonopin in the States. I'd say it takes away about 70% or 80% of the pain most days.

    Here's Dr. Cheney's recommendation on things to try to protect the nerves from further damage:

    Klonopin (Rivotril in Canada)
    Kava Kava
    Valerian Root

    Good luck.

  13. Granniluvsu

    Granniluvsu Well-Known Member

    Not sure if what I have is part FM and part acthritis. It is mostly in the back of my head, on the lower part now and sometimes into my neck too. Yes, I have had that foar year tooo.

    Good grief, not much really helps. I have had some of this for about 20 plus years. It might have changes some over the years but it surely is aggravating, to say the least.

  14. Ales

    Ales New Member

    It might be some kind of brain injury but the variation of the intensity of the pain/pressure is quite remarkable. For me the pain/pressure and the accompanying exhaustion is weaker for about a week but then suddenly without any apparent trigger the pain/pressure and exhaustion intensifies as if some "viruses" started to proliferate in the particular site of the brain or as if an "acid" started to pour out from this particular site. I may try erythropoietin as it plays a substantial role in the healing response to a brain injury. Has anyone tried erythropoetin?
  15. Ales

    Ales New Member

    It is interesting that heparin helps since Wobenzym, which helps me a bit, also improves the rheological properties of the blood. It is interesting to note that the brain tissue itself doesn't pain but the source of the intracranial pain are the blood vessels and meninges (apart from an intracranial bleeding, tumor like expansion or an inflammation).

    Ales, Central Europe
  16. terrimaguire

    terrimaguire New Member

    My headaches started when I was 15, right after I had mononucleosis, then the fibromalgia set in at 18. I'm now 46. I have been having daily headache ever since, sometimes migraine, but not very often. I went to the Diamond Headache Clinic in Chicago and was dx'd with mixed headache, because the headache is not localized. It's in different areas. Unfortunately, I now have a "sizeable" stomach ulcer from all the Excedrin I've been taking over the last couple of years, because Excedrin is the only thing I've found to help the headache. I have purposely avoided other medications for it out of fear.

    A week ago, I was put on Topamax, but have gone off it now, because I had severe numbness in my right foot. What a journey this has been.

  17. byoungusa

    byoungusa New Member

    I am confused by headache head pain thing. I have defined it this way to my neuro. I have tension headache, diffuse pain up the back of my head constantly. I get sinus headache pain across the top of my head and forhead and temples. I have had migraine headache that was like an axe coming down through the right side of my brain and eyes. This is knee buckling,nauseating,blinding. Then there is the brain pain, a very localized pain in my head on the right rear quadrant, this can be in right front quadrant but never in both same time. Have had mri w/o contrast (insurance wouldn't pay for contrast) and there are no obvious problems.
    I do not count the facial nerve pain, earache type pain or muscular scalp pain as headache or head pain at all? Anybody else having definition confusion?
  18. Honora88

    Honora88 Member

    I always feel like someone is touching me on my right side.

    Don't know if it was due to the brain hemmorrage. The nuero said it's common with Cfids
  19. Malcolm82

    Malcolm82 New Member

    I have had frequent sinus headaches since I was in grade school. When I was in college the Tylenol that I had been taking stopped working.

    I was at one of my college chums folk's house one weekend and got one. He gave me some Excedrine and the pain was gone in about 30 minutes-GREAT!!!!

    I have taken that ever since (I'm now 44). When I started to get the CFIDS symptoms, my headaches changed location and intensity and started coming in clusters of 4 or 5 days in a row. Ever since then, the Excedrine stopped working altogether. The only thing that helps at all is sniffing hot pepper spray up my nose on the side the headache is on. If I do that when I just start to feel the headache coming on, it will take care of it. If I don't use it right away or wake up with one, it will help for maybe 15 minutes, then the headache comes back full force and usually lasts from 6-8 hours at least. ARGHAAAAAAAA!!!!

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