Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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new daily persistent headache-will this ever end?

Discussion in 'Neurological/Neuro-sensory' started by Vickytoria1988, Jun 25, 2017.

  1. Vickytoria1988

    Vickytoria1988

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    Hi all,

    I have experiencing since January a non-stop headache which persists 24/7. Headache came after a very exhausting period, while vitamin B, D and iron were low. I had to leave my job on May and now I am home-bound and most of the time bedridden.

    In previous cases acupuncture in Greece had saved my life from the very first session but this time it does not work as it should. Maybe because this time I pushed my head way too much, working for 2 months non-stop while having the problem.

    As a result, I experience severe tension headache that almost everyday it changes spot (in the front, in the right side, then on top of head, then everywhere)....pressure is unbearable and my nerves are so stiff, feeling like they are going to break. I touch and rub my face all the time and crack my neck to decontract the muscles. This is horrible. I often have crises where I almost vomit. in April I went to the hospital where they injected Novalgine (metamizole). It helped for 1 day. Then problem returned. I cannot do anything while having this, even a movie or a discussion is a big deal to follow.

    The worst part is that it affects the nerves of the whole body...I get a feeling like being "paralysed" in hands and legs, my right side may be slower than the left....that is scary, especially when this comes in the middle of the night. When I get it in the front of my head, I cannot breathe properly and even my voice changes. In the past I could not hear well from one ear and my trigeminal nerve was sensitive for approx. 2 years....

    Worst part is when I get up during night because of pain, which has been happening since January. :(

    Paracetamol or ibuprofen do not help. I took amfitryptiline for 3 days and I could not sleep from side effects-it was terrible.

    I am thinking to continue with acupuncture during the whole summer with the hope it will work as it did in the past...if not, I am thinking to try hypervaric oxygen, bioresonance therapy or even botox. I have the feeling that medication will make me feel worse.

    I have done an MRI, it was clean, my neck is fine too.

    My acupuncturist has literally saved me 3 times from this headache. Once it starts on a specific date, I know that it is an aggressive illness that if not treated it will lead to my transformation into a plant - and that is what it has almost done. And of course, once presented, it will never, NEVER go away.

    And of course while having the problem, crashes are bad. Really bad. Hard to describe the feeling of exhaustion.

    3 neurologists have said I should see a psychiatrist (!) since it is psychological (I doubt).

    Dear members, having said the above, my questions are as follows....

    1. Is this kind of headache a typical symptom of CFS?
    2. Does anybody have a headache with these characteristics, especially the fact that it only gets worse and transforms people into almost a....plant?!?!
    3. Has anybody tried hypervaric oxygen, bioresonance therapy or botox for tension headaches?If yes did anybody got rid of this nightmare?

    I am 29 and I wish one day I will get rid of it and have a family....last year I was so happy and 70% healthy, doing a million things....now I am just spending my days thinking what I can do and praying...
     
  2. Timaca

    Timaca Senior Member

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  3. Timaca

    Timaca Senior Member

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    Having mentioned the Chiari Malformation possibility.....in me, I get headaches if I eat a food or supplement that doesn't work for me. (and there seems to be a lot of those....)

    Some people get relief from headaches using essential oils: peppermint and or lavender. I haven't tried this approach but you can look online for info...

    Good luck!
     
  4. PinkPanda

    PinkPanda Senior Member

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    I don't think what you experience is really typical for ME/CFS but I guess there are some people that also suffer from migraine.
    Are you taking any basic supplements at the moment? Maybe I would check for vitaminb12 and magnesium deficiency. If the nerves are involved, vitamin b12 deficiency strongly affects the nerves.
    Also if you want to take vitamin b12, I would take it as hydroxocobalamin and sublingual, not to swallow like in a b-complex.
     
  5. Forbin

    Forbin Senior Member

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    I got such headaches shortly after I stopped taking Klonopin, a benzodiazepine anti-anxiety drug that can have prolonged withdrawal symptoms, including headache.

    I only took Klonopin for about six weeks (for ME), but apparently, in some cases, that's long enough to induce withdrawal symptoms that can last months.

    In my case, the severe, persistent headaches cleared up after about two months, never to return. Whether they were the result of Klonopin withdrawal or of ME itself, I can't say.

    However, I can say that Klonopin did nothing for my ME symptoms.
     
  6. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    @Vickytoria1988 I'm so sorry for what you are going through. You sound very similar to me but I was already a migraine sufferer before the ME.

    After the EBV and tetanus jab, my migraine became 24/7. On top of the migraine i also had what I call the ME migraine which moved around my head just like yours.

    I also tried acupuncture and everything known to man. Nothing touched the pain. I had paralysis and vomitting daily. Lying in a pitch black silent room for years. The agony was indescribable and relentless. After a year or so I had scratches down the sides of my face from trying to claw the pain out of my head.

    Sometimes I'd spend hours just rocking on the floor in the dark, sobbing with the pain trying to not vomit. Every time I thought I would lose my mind, the pain would ease just enough to bring me back, then it would ramp up again. That was 24/7 every day of the year.

    Nothing helped apart from time. After a couple of years, I tried all of the same painkillers again, and one worked this time. Syndol. It gave me complete relief for the first time in years. I'll never forget that day as long as I live, it saved my life.

    In the early days nothing got through to the pain but once the virus had time to settle down and my body had been resting for so long, i was able to manage the pain better.

    I still have that daily migraine 20 years later. It never stopped since the EBV and tetanus but painkillers take the edge off now or give complete relief at least.

    I know my post is a bit depressing but I know what you're going through and I know you will find some relief once the storm in your body settles a little.

    Its not psychological. Though I will say that surviving something like this might make you mentally invincible ;)

    There is one component of Syndol that can be easily bought on ebay or Amazon called Doxylamine Succinate. Its an anti-histamine and muscle relaxant. It helps with the muscle tension and if taken before bed, it might enable you to sleep through the pain. Considering it isn't a painkiller in itself, its a God send sometimes.

    I really, really hope you get a break soon and find the pain relief you need :hug:
     
    TiredSam likes this.
  7. Vickytoria1988

    Vickytoria1988

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    Hi all, thank you for your answers and tips!

    Got up after another restless night. I do not feel safe with all this pain in the head.

    Timaca, I think that Chiari malformation would show to the MRI, which is not my case fortunately. I will insist on B complex too....Hell, Hath, No, Fury, the pharmacy does not give me codeine unless doctor recommends it, which I would like to try, so I will go to a doctor and ask for it.

    More opinions are more than welcome, I will stay connected that is for sure..., every answer is more than important for me :)
     
  8. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    @Vickytoria1988 I forgot to mention the Doxylamine is sold in bottles under the name of Kirkland's Sleep Aid
     
  9. bertiedog

    bertiedog Senior Member

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    I am also a severe migraine sufferer and have had weeks of virtual non stop pain but usually when this happens something extra is causing it. Things like too much folate or B12, sensitivity to coconut products for instance.

    Have you tried a Triptan, something like Sumatriptan? You can get them in various forms including injections, nasal sprays as well as tablets. For me they are a life saver as long as I take them with something like paracetamol and caffeine at the beginning of an attack. I will also use ice on my head and rest for at least an hour for them to work.

    I would have thought that you needed a preventative, maybe something like Topriamate, not sure if you have tried this at all. You would be able to take the preventative as well as the Triptan until you get things under control and obviously you would need to see a headache specialist to be prescribed these meds.

    I have regularly acupuncture with an acupuncturist who has been trained in the traditional Chinese way and I do benefit from this but it took several treatments for things to improve.

    I also breathe oxygen 3 times daily from an oxygen concentrator and this benefits things like fatigue and muscle pain. It delivers 5 litres per minute and I use it for around 30 minutes at a time. It was inexpensive because I bought it from EBAY. This definitely helps me too.

    Hopefully some of these suggestions will be helpful for you as I know what agony it can be to suffer with horrendous daily migraine.

    Pam
     
  10. Alvin2

    Alvin2 If humans were rational...

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    I had a similar headache (though not traveling) and what helped was methylfolate and sublingual methylcobalamin (B12). Both taken daily. It also reduced my PEM a couple days. I tried it because of a study from last year finding it helped some people with ME./CFS by lowering CSF homocysteine.
    I also had no response to painkillers :bang-head:
     
    Rooney likes this.
  11. ahmo

    ahmo Senior Member

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  12. Rooney

    Rooney Senior Member

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    I will second Alvin2. When I added Solgar methylfolate to my high dose b12 injections (or B12 oil or sublin.) my daily headaches went away.
     
    Alvin2 likes this.
  13. E.man

    E.man

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    Bega Valley , Australia
    I was getting some migraine which could go to vomiting but it got more common to the point where most of this year I've had head pain the whole time.
    Sumatriptan, codeine from the medic on script helps cover it but it's still there underneath. A little straight ganja can help too.
    As if the rest of cfs isn't bad enough this takes me out totally. Could do without it.
     
    pattismith likes this.

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