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Chronic head pain like steel bands crushing into my skull

Discussion in 'Pain and Inflammation' started by anniekim, Oct 23, 2010.

  1. anniekim

    anniekim Senior Member

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    When I badly relapsed five years ago, a new symptom that came on was chronic head pain. Five years on, although a little bit improved overall, the head pain is still there 24/7 and has never gone in five years.

    I can only describe it as feeling like steel bands are crushing into my skull, an intense feeling of pressure. When I lie down, this pressure increases, as does overdoing it. I also have a very tender sore spot on the left side of my forehead. Many days I can get sharp, burning pains, especially on the left-side of the head, neuropathic pain basically. The pressure though is constant.

    I don't believe it's muscular in nature, as has been suggested, tightness in neck etc.. I also don't feel it is the same as a migraine, which can come and go etc, have extra symptoms with it like huge light sensitivity, flashing lights etc...

    i have sometimes wondered whether it is to do with reduced blood flow to the brain? Yet I don't know whether reduced blood flow would cause the constant feeling that my skull is being crushed?

    With the idea that it could be blood flow, I have tried the medication nimodipine which supposedly dilates the cerebral arteries, it is given to people after a certain kind of stroke. I didn't notice a huge improvement on it and came off. However, I realised that when I was on it, I was able to lie flat a bit longer before the pressure in my head became too intense, so have gone back on it, as I need several periods of lying flat each day. The nimodipine helps I think a little, but only a little.

    I was wondering whether anyone else has this constant crushing pressure in their head and their thoughts on it? Or anyone's thoughts on what could be the underlying problem causing the feeling that steel bands are digging into my skull 24/7?

    I should also add that I have had the sensation of blocked ears (have been checked out by a ENT doc, couldn't find anything) for 12 years when my M.e began. Also when I badly relapsed five years ago, as well as the new symptom of head pain, I started to suffer frm tinnitus, that too has remained and never improved.

    Also, finally, I should note that I must stick to strict limits on computer, watching tv and telephone use otherwise the head pain gets worse.

    Many thanks in advance.
     
  2. maryb

    maryb iherb code TAK122

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    I have very similar symptoms to this, lying down is a nightmare, I take a fast acting sleeping pill so I don't have to suffer too long, I don't ever lie down during the day as I can't stand the feeling, if I'm desperate to rest I lay on the settee propped up by loads of cushions but still get some sensation as soon as my head goes from the upright position. Mine came after an inner ear virus 3 years ago, first time it went a lot better after about 12 months but after my last attack 4 months ago its back with a vengeance. GP's don't have any answers. I tested positive for high EBV titres several times over the past year after these attacks.
     
  3. Athene

    Athene ihateticks.me

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    I have had this crushing headache for years and it is mild encephalitis, i.e. literally inflammation of the brain, according to my Lyme doctor.
    It is harmful to the brain to be in this condition so you should take whatever you can to reduce the inflammation.
    After years of using ibuprofen paracetamol and codeine, these no longer work for me.
    My doctor recommended grapeseed extract, taken every day, and this really does work. I later switched to green tea extract when the grapeseed started upsetting my tummy (due to allergy) and this also works nearly as well.
     
  4. anniekim

    anniekim Senior Member

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    Athene and Maryb many thanks for your replies. Athene, your suggestion that the crushing skull sensation is inflammation is very interesting. I tried the herb, serrata boswellia a month back for two weeks. Boswellia is supposed to reduce inflammation but the crushing sensation in my head got much more intense and I had to come off it, as it just didn't seem to suit.

    I've had a MRI scan which came up normal. Do you know whether inflammation of the brain would come up on the MRI scan?

    Anti-inflammatories such as ibuprofen do little to ease the head pain for me, so I was wondering whether that might suggest my head pain is not due to inflammation? Any thoughts? Thank you.

    Also when you say it's harmful for the brain to be inflamed, can you explain in what way is it harmful? What could be the long term effects?

    Also, Athene, do you have any thoughts as to why lying flat and watching tv, using computer, speaking on the phone make the pressure and pain in the head all worse? Thanks.

    Grapeseed extract, green tea extract are both anti-oxidants, i believe. Sorry my knowledge of these things is nigh on non-existent, are anit-oxidants anti-inflammatory if recommended for your head pain caused by inflammation?
     
  5. Athene

    Athene ihateticks.me

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    Hi Anniekim,

    At the height of my headaches I had an MRI which the doctor said was "normal", then he went on to say, how weird that the scan shows severely reduced blood flow to the temporal lobes and certain other parts of the brain. "So that's not normal?" I asked and he replied, "well, you don't have any illness that I know of". The MRI caused one of the worst headaches I have ever had and it lasted a week.

    I get brain fog first from watching TV, using the 'puter and the phone, and then it turns into a headache as it gets worse. These things all emit a certain electronic frequency which acts up on the body cells. My doctor told me they induce various types of bacteria to become more active, release toxins etc, though I don't know if that is connected. All I can tell you is it happens to me and many other CFS sifferers too.

    Suffering long term inflammation increases your risk of cancer, heart disease, antoimmmune diseases... the list is very scary.
    This web age introduces the subject
    http://health.usnews.com/health-new...mmation-reduce-it-to-protect-your-health.html
    I have an autoimmune situation after my years of headaches.

    The link between antioxidants and antiinflammatories... I don't know, sorry! I have always been wary of herbal teatments as I regard them as the poorly-regulated, less purified relation of prescription meds. But I was told to use these by my doctor, who is a conventional doctor, not a herbalist. He said that most of his patients find normal antiinflammatories cause too many other side effects and after a while, simply don't work.

    I forgot to mention that he also gave me an anti-inflammatory diet which is definitely making a big difference to me. The main inflammatory things to avoid are fried and fatty foods, coffee and alcohol, sugar, air pollution...
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    low dose benzo or lyrica i have found can help with this as it can ease inflammation from viral induced cytokines causing the inflammation.

    cheers!!!
     
  7. anniekim

    anniekim Senior Member

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    Athene, thanks for your reply. One thing I picked up though is that you said after watching tv you get brainfog then a headache comes on. So should i read that I you don't have the crushing headpain constantly, 24/7 as I do. My head always feels as if steel bands are crushing into the skull, the sensation never goes, just after watching tv, writing this on the pc etc, the head pain gets even worse.

    Heapsreal, thanks for your reply. I have tried lyrica in the past, didn't make any difference to my head pain unfortunately, but did increase my noise sensitivity and generally the drug didn't seem to suit me at all...
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    some who dont respond to lyrica do respond to neurontin which is a similar drug, also topamax is in the same category which could also help.

    cheers!!!
     
  9. Wayne

    Wayne Senior Member

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    Atlas Profilax for Headache Relief

    Hi Annie,

    First of all, here's a link to another thread on this board you may want to check out for ideas:
    HEADACHES - What's your treatment?

    I suffered with chronic intense pressure and pain in my head for years. To me it felt like my head was inside an anvil. I did three significant things that have reduced this chronic pain by about 75% over the past 2-3 years.

    1) I went to a chiropractor who did cranial/sacral work. He gently tried to move my "locked-up" cranials with limited success. Since that didn't work, he used a technique (not sure what it's called) where he inserted a balloon-type device into my sinuses and inflated it. This caused my cranials to finally "unlock". This was a huge step for me.

    2) I had a one-time alignment of my atlas (uppermost cervical vertebra) using a technique called Atlas Profilax; sometimes spelled Atlasprofilax. It was an even bigger step for me than the cranial sacral. I posted extensively on my experience at the time on this thread entitled,

    "Atlas Profilax Worked / is Working Very Well for Me".

    3) I had an asymptomatic root-canaled tooth extracted and replaced it with a bio-compatible bridge. It not only reduced my headaches, but my chronic nausea as well.

    Headaches can be caused by so many things, but I would highly recommend you consider seeing an Atlas Profilax practitioner ($250 for a one-time alignment). The atlas alignment they do is unlike any other. I suspect many on this board have chronic pressure on the 12 major cranial nerves exiting the brain stem and which pass through the atlas. This can cause so many problems. For me, I discovered it was a major contributor to my headaches.

    All the best in finding some good solutions for yourself.

    Regards, Wayne
     
  10. Athene

    Athene ihateticks.me

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    Hi Anniekim,

    QUOTE
    One thing I picked up though is that you said after watching tv you get brainfog then a headache comes on. So should i read that I you don't have the crushing headpain constantly, 24/7 as I do. My head always feels as if steel bands are crushing into the skull, the sensation never goes, just after watching tv, writing this on the pc etc, the head pain gets even worse.

    The pain was 24/7 before I started using the green tea extract (that's the one I'm on now). The grapeseed extract turned things around almost instantly and when I switched to green tea extract it continued nearly as good.
    I ration TV and computer to max half an hour a day.
     
  11. maryb

    maryb iherb code TAK122

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    Athene can you tell me which grapeseed and green tea extract products you use? I can possibly squeeze another couple of products into my cupboards:D
    I was thinking of trying Enhansa but its very expensive and as much again to ship it. So pondering on that one.
     
  12. Athene

    Athene ihateticks.me

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    Hi maryb, the brand is "Form Med healthcare" and the green tea is called Phytoform Gruntee, the grapeseed extract is called Rotwein.

    http://www.formmed.de/index.html
    This is their website but unfortunately it seems to be only in German. I bought them while I was there and plan to order more soon, so if you have problems getting the stuff I can give you a phone number of the place I intend to order from, as they speak English.

    I would definitely recommend using the grapeseed if you don't have any grape-related allergies as that one was miraculous.
    The green tea is a good second. Green tea lowers your blood pressure, a problem I overcome by taking it last thing at night, and it is essential to take it with food because otherwise it irritates the stomach.
     
  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Have you considered meditation?

    GG
     
  14. Athene

    Athene ihateticks.me

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    Hi Ggingues, This type of pain is so atrocious that you nearly go out of your mind and I honestly think meditation would be impossible for anyone!!!I sometimes reached the point where I was smashing my head against the wall just to see if that would make it hurt any more, to see if it was possible to have even more pain than I already had.... and it wasn't.
     
  15. anniekim

    anniekim Senior Member

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    I agree with Athene, meditation is just a nightmare with this kind of head pain. My whole problem is lying flat the pressure and pain in head increases even further and meditation is nigh on impossible, even sitting up with my eyes closedthe pain and pressure get very bad. it's a real problem as getting into a deep restful state with M.e is so good for the M.e body, but the head pain prevents it.

    Athene, many thanks for your replies, very appreciated, especially as I know you cannot be on the pc for longer than an half an hour a day.
     
  16. maryb

    maryb iherb code TAK122

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    Thanks for that Athene, I'll have a look at both those products, Enhansa keeps calling to me as well but when you have so many many bad reactions to products the thought of another 60 down the drain certainly makes one hesitate.
     
  17. anniekim

    anniekim Senior Member

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    Thanks Wayne for the above, I read it with interest and am delighted your head pressure is so much better now through the various treatments you have kindly listed. I am too ill to leave the house at the mo so it wouldn't be possible to attend any appointments currently. Also I live in England and don't know how well known the Atlas procedure is in this country, would obviously have to do some research.

    I do have a question though, you say you suspect many 'people on this board have chronic pressure on the 12 major cranial nerves exiting the brain stem'. Do you have any theories why people with M.E could have this pressure on the 12 cranial nerves? What caused it in the first place?

    Many thanks
     
  18. Stone

    Stone Senior Member

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    I had a pressure headache for 18 months or so which ended about a year ago. My doctor, who I have since fired, called it "atypical migraines". I told her that it should not be plural since it's just one long never ending headache, but she didn't get it. Also I told her there's nothing migraine like about it. I have migraines too, and this is completely different. Anyway, she referred me to a neurologist who did an MRI but found nothing that would explain the headache but he did do something that helped me. He treated it as it if were a very stubborn migraine and set me up for an infusion in his office. His practice has an infusion room where IV treatments are administered to patients for whatever reason. The neurologist has a specialized formulation of medication designed to break a stubborn headache. I underwent an infusion and it really helped the headache but failed to completely kill the thing so a few days later I had another infusion which did the trick and I haven't had another headache like it since. What was given to me in the IV was the same cocktail they give people with horrible migraines, although again, my headache was nothing like a migraine to me. I was 'drunk as a skunk' afterward and slept for hours and hours when I got home, after making a complete fool of myself on the short car ride home from the office (my husband still laughs about it). I wonder if anything like that is available to you from a neurologist who specializes in migraines, even though your headache doesn't feel like a migraine. Maybe you've already tried this, but all I can say is that I wish they had done that for me much sooner. Best of luck to you. By the way, have you considered a pain clinic? Perhaps a viable option at this time is to try to control the pain better until you can find the thing that actually stops it for good. I'm so sorry you're going through this. My heart breaks for you.
     
  19. Athene

    Athene ihateticks.me

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    That's interesting Stone. It would be very interesting to know what was in the infusion.

    Anniekim, I suddenly remembered abot the problems with lying down. When it was really bad I had to sit bolt upright all night, but when tolerable, I could lie with my upper body inclined at about 45 degrees and eventually, through sheer exhaustion, fall asleep. I set up a kind of "wedge" of pillows to support my whole upper body and also put a cushion under my knees to stop me sliding down the bed, which tends to happen when you fall asleep.
    If you fiddle about you should be able to find the angle on inclination that you can tolerate.

    I have often wondered if this increase in pain from lying down is related somehow to cerebrospinal fluid - maybe something flows upwards and increases the pressure further when we lie down? I just wonder because, with this head pain, it goes down my neck and into my upper back too.
     
  20. Wayne

    Wayne Senior Member

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    One Case of Full Recovery From FM After Atlas Profilax

    Hi Annie,

    Atlas Profilax was developed in Switzerland during the 1990s. I heard there are about 400+ "certified" practitioners in Europe, compared to only about a dozen in the US. As such, I think there's a good chance there may be several in UK.

    When I mention certified, I'm referring to the approximately one-week training that is involved. The training is not from a traditional medical school or college. As such, any person can get the training, and be certified after only one week.

    The young man who did mine had been a massage/cranial sacral therapist for the prior twelve years, and I felt a high degree of comfort with him. He definitely seemed to have a gentle and confident touch and an ability to sense when the atlas had slipped back into alignment.

    Part of the reason I'm mentioning some of this is because it's possible an AP practitioner might be willing to come to your home. Since most are probably not tied to a medical office or facility, it seems like it would be a good possibility.

    A couple of reasons: Many people on this board have related how they had various kinds of accidents prior to developing CFS or FM. Most of these resulted in various degrees of whiplash, leading to chronic neck and spinal pain. These kinds of jolts can move an already misaligned atlas to the point where the cranial nerves become "compressed" because of the resulting constriction of the opening in the atlas.

    Also, AP practitioners generally say that about 95%+ of people they see have a misaligned atlas. They believe this often occurs at birth, before the "pins" that normally lock an atlas in place are fully formed and able to do this properly. Apparently, in Eastern Europe, the culture is such that great care is taken to prevent unnecessary stress on the neck during the first few months of life. This means many less people have a misaligned atlas.

    In my case, it was clear to me that my vagus nerve was significantly compressed. Almost immediately afterwards, I began to notice a significant new energy in my entire GI tract. I began to eat my food with an almost "primal" element to it. It was sort of funny and a bit disconcerting at the same time. This only lasted a few days however until my body got used to the new nerve energy.

    Since so many of us have digestive problems, I wonder how much can be traced back to our GI tracts just not getting enough nerve energy to do it's work properly. Since the vagus nerve runs through the atlas, it makes sense to me that this can often be the case.

    Some people who have the AP done do not have near the experience I had, even though there was a misalignment. I think much of any potential results depends on the size of the opening through which the cranial nerves run. If it's smaller than normal, a small misalignment can mean significant compression. If it's larger than normal, a larger misalignment might not impact the cranial nerves at all. It's a very individual thing.

    Please let me know if you have any further questions about this. I feel that "structural" problems often contribute to many of our symptoms, and if they can be relieved to a certain degree, it can make a big difference in our quality of life. Plus, I know of at least one woman who completely recovered from her CFS/FM after receiving her AP alignment.

    Best, Wayne
     

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