How do you manage to stay possitive?

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Hi 

Like most of you, I have numerous symptoms, but perhaps the worst is the permanent 24/7 flu like headache and lightheadedness. I have had it for over 2 years now, and it is always worse on waking.

I find it is really getting me down and making all my other symtoms more difficult to deal with.

I have tried all the usual pain killers, non of which make any difference, I have also just started meditation and an on line CBT course called Silvercloud. I am trying to stay off anti- depressants.

If anyone has any suggestions on how to keep your spirits high whilst suffering a massive 24/7 headache I'd be grateful.

Rob

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10 Replies

  • Posted

    For me personally, the headaches are an indication of inadiquite blood flow, or your body requires more energy than the blood flow is able to provide. On a constant basis this of course leads to chronic fatigue.

    I have found betaine HCL has massively helped and my headache is non-existent so long as I follow healthy dietary choices etc.

    Might be worth looking into.

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  • Posted

    Hi Rob,

    I don't have the 24/7 headaches and its difficult to know what to say In that department. I have cut back on alot of physical activity and this has helped lessen symptoms at present. Of course, catch 22 because then you get de-conditioned. Have you found anything that helps? Baths, darkened room etc? Have the doctors ruled out other things?

    Regarding staying positive, i feel when its bad, I have to accept that it will go back to not being bad again and ride It out. Ofcourse when you have a few days of it, it can feel like there Isn't that option. Talking to others on here and allowing yourself to be in the moment can help I find. Today, I do not have pain but energy is out of the window so, I'm in bed in darkened room with no stimulus eg.music/dvd etc. Its a tough ride cfs/me. Tomorrow, I hope to be less drained, and may then see friend.

    Regards the headaches, sometimes food intolerance can cause them and caffeine etc can be a real issue for us with cfs/me. It may be worth keeping a food diary if you think it would help? Also, fluid intake can severely affect headaches so keep your fluids up too.

    Hope that's helpful

    B

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    • Posted

      Hi Beverley

      Thanks for the reply.

      I have tried everything, nothing seems to help. When the headache started in December 201, they would often diminish as the day progressed, they never fully went away but  the intensity lessened.

      As time has gone on they have become permanent.

      I had a severe dose of Campylobacter in November 2015 and since then all my symptoms have got a lot worse. I intend to try a gluten free diet soon and see if that helps.

      Rob

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    • Posted

      Hi Rob,

      Its strange how things can hit us harder with cfs. Food poisoning is awful on its own.

      Are you just trying out cutting out gluten or was it recommended to you?

      I am gluten, wheat and dairy free and although it can be difficult to find places that cater when out, things have become easier in recent years. I hope you find It helps you. Do update us on that?

      Best wishes

      B

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    • Posted

      Hi Beverley

      I have heard that some people have benefited so just going to try it.

      Got to get organised with Gluten free products first.

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    • Posted

      Hi Rob,

      Hope it helps you too. Most supermarkets have a good selection of gluten free products now in the freezer as well as other areas. Do let us know as it is always helpful to know what is useful. I hope you get to the bottom of the headaches sooner rather than later too.

      Best wishes

      B

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  • Posted

    Rob. The meditation can help with all this. I don't have the headache, but I have other symptoms related to nerve issues that are quite severe. In addition to meditation, there's a kind of attitude I cultivate. I accept the pain without trying to battle it. This attitude is an offshoot of the meditation and the readings that came with the meditation course. I know this can be difficult when your body is screaming for attention. But it is possible. Also, while accepting the pain, I don't sink into it. I focus on other things, like listening to music, reading, watching movies, getting on the computer, and, most of all, appreciating all the positives in my life.

     

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  • Posted

    Hi Rob ...not had the headaches .... but suffered the low spirits... my answer,, plan for the future.. we do have one  ..

     

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  • Posted

    I was having severe headaches everyday for about 9 months, blood tests scans you name it they did it and couldn't find a reason for it -doctor then tried me on Topirimate which is actually an anti seizure drug for epileptics taken at night to calm abnormal brain activity - it's helped no end and touch wood I've had only a couple of headaches since
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