Complex regional pain syndrome - head

Hi everyone,

I've had a constant migraine like event for the last 18 months. I'm trying to find other people who may have a similar problem as so many of the posts and case studies I've read have had constant but independent migraines.

My pain is 24/7 no relief, no treatment that's worked, never dips below an 8 on the pain scale and more often than not, remains at a 10.

As you may imagine this is utterly debilitating. If a system in my body can be affected by the head pain, it is affected.

I won't go into too much detail right now as I'm sure you have better things to do than listen to me complain, but I would really appreciate finding some people who are in the same or similar situation.

If you don't want to reply to this, then maybe send me a private message??

I really hope I hear from someone.


29 Replies

  • Hi Kat, I feel for you, I get that sometimes but not on a continuous basis. I would get myself to my doctor and be very firm and beg for some positive advise and relief. this cannot go on and keep you from having any sort of pleasant life! pamy

  • Hi thanks so much for your reply!

    I am being treated by a fantastic Dr but there is not much they can do except try and manage the pain.

    I am hoping that someone, somewhere will have a treatment plan that has worked for them, that maybe I could try.

    Has anything worked for you??

  • I currently just rely on my Imigram which is the only thing that actually works for me. But I don't like to use them to much after all I have read on them. They are the last resort when i am at the end of my tether. I hope you find some solutions in the near future Kat..

  • I've not heard of that medication before, but I will definitely look into it. Thanks so much!

  • Yeah they are Imigran 50mg and they really help. I don't

    know where you are Kat but I am in Australia. Ask your doctor when you next see him. All the best to you.

  • It's a triptan derivative. Unfortunately I've already tried those, no luck. Thanks for trying to help though x

  • I had meningitis last June and since then I feel the same.I am trying very hard to find out myself what is happening.Since then I was put on pegabiline and Duloxetine which I feel has held my recovery back.I am at the moment coming of them and having a terrible time .I suffered with migrains before the meningitis but it goes on and on and on there is never any let up.Since being on the pegabiline I have had body pain that has got worse ove the time as well.The doctors I have seen think I am putting it on I'm sure as they are not helping me the way they should that is even private ones.If it was not for my husband being there I would be in a right mess as I am hardly able to do anything as this makes me feel worse.I have always been very active so I really don't know myself like this. The only thing that makes me able to stand what I am going through is being able to rest as I said my husband does most things and there is on,y 2of U.S. In the house at the moment. As far as I am concernd there is no help out there no one cares if you don't have a tumer is something sinister going on just forget about any help as they think I am sure you are faking it.Thats what I can't u derstand who would want to be like this.I am sorry for being such a dooms day but this is the experience I am going through a hell if I am honest .I am sorry if you are not very well but just keep trying to find out how you get better do your own research If I have any break through I will post it .rest as much as you can and try not to worry to much.I hope you have plenty of help round you to get you through this terrible time good luck .Jean viral meningitis

    Ps why is there all these people that have the same complaint not taken seriously after this terrible disease I think it's a disgrace by the doctor .you would think in this day that research on the after math of this disease they woul come up with some cure,

  • Hey thanks for your reply!

    According to my Dr, my central nervous system is screwed, essentially registering everything as pain. I have a long history of nerve problems anyway and my Dr thinks that these problems have "primed" my pain centre. I then got a bad headache which was apparently the last straw for my pain centre and that's why the head pain goes on and on.

    I'm really sorry that your experiences have been so negative. I was in your position last year. I was in and out of hospital and all the doctors I saw told me I was faking it.

    Then I saw a headache specialist who has really helped me. I have tried every remedy available from drug therapy to hypnotism. Try not to take painkillers as they feed the problem and definitely get off the pregabalin as this WILL amplify the head pain.

    Are you in the UK?? Because I can strongly recommend my Dr in Cambridge.

    Please let me know if there's anything I can help with (I've been through most everything!) I am more than happy to share my experiences.

    Best of luck x

  • Hiya yes I am in the UK I would be grateful if you can get me his email address so I can contact him. Will post any progress thank you .Take care jea viral meningitis

  • Her name is Dr Jane Anderson, she runs a clinic at Addenbrookes Hospital in Cambridge. Their contact number is 01223 245151. You need to get put through to clinic R3 and from their request to speak to Dr Anderson's secretary.

    Be warned, she's in very high demand, can take months for an appointment. I had to wait 6 months for mine.

  • Thank you so much for taking the time to get me this information it's really kind of you jean viral me igitise keep in touch 😃😃

  • No trouble at all. I used to work at the hospital before all this started so I knew it off the top of my head!! Good luck x

  • Hiya Kat thanks so much for your time on this I am just trying to get her up on google xx

  • Hi Kat. I get so depressed when I think of the life I should be having now. I can't work but obviously no sick pay as I can manage to go to the toilet myself at night??? I tell myself there is always someone worse and should be thankful for my odd pain free days. Why the he'll isn't this debilitating illness taken seriously? I was told by the neurologist to come off all painkillers and the next step was prpananol. Yet another daily drug that I am reluctant to start as the last one sent me doolally. I have a bright side, I started acupuncture a few weeks ago which have decreased the intensity and frequency although it costs ( which I can ill afford) as the NHS acupuncture didn't help. The person I go to practises Taiwanese method. It might be worth you trying it as all else seems to have failed. Do you get any pain free days at all? My heart goes out to you. I do hope you find something that helps soon

  • Hi babs1234,

    Unfortunately, I have tried acupuncture but it just made things worse.

    Propranolol has been known to help with migraines, and it did initially head off the worst of the pain when I started it. However this effect did not last and it made me really irritable and I suffered from a lot of hallucinations and nightmares.

    Painkillers are generally a bad idea how I take Naproxen (is a sort of more powerful cousin to ibuprofen) on days where I simply can't take it anymore and it helps take the edge off the pain. The downside to this is that you MUST eat something with it or it can eat through the stomach lining, and I am often too sick to eat or keep anything down at all.

    No, sadly I get no pain free days and it can be extremely depressing. I study a lot and do everything possible to keep my brain occupied at ALL times in order to keep most of the depression away.

    Please let me know if I can help you with any advice, I'm more than happy to share.

  • Thanks. The amitriptilyne I was on for nearly a year did help at first but not for long and I was like someone with mild dimetia. Did you try the acupuncture that doesn't insert the needle near the point of pain? That is what the NHS acupuncturists do and yes made it much worse. This guy inserts them as far from the pain as possible but on right lines.

  • The therapist I saw inserted the needles in the back of my neck around the occipital nerve. As it caused so much pain, I didn't let her try again. Made me a bit wary of it all.

  • That's exactly what happened to me. When I went to the private acupuncturists he said they should never insert the needles near the point of pain, that it's 50/50 if it works and if it doesn't it can make the migraines much worse. Maybe try the Japanese version, its helped me

  • I have lived with complicated migraines for a number of years. My symptoms are indistinguishable from a stroke without a full battery of tests including an MRI. With me, the pain comes later in the cycle. I start with confusion, blurred vision in my right eye, slurred speech, then severe headache followed by right sided weakness. With all of my medication that I take on a daily basis, my best treatment I came up with on my own. I completely changed my diet and removed all processed foods. It sounds much harder than it is. Anything is better than living with migraines running your life.

    Now, unless I don't sleep for a few night or eat something I shouldn't have. I have control of my life and I enjoy what I eat. Let me know if you would like to talk. I hope you find some answers soon!

  • Hi, thanks for your message.

    Sadly I've tried all of that, I tend to stick to foods I know will stay down whilst I feel so sick. I feel so sick most of the time that I can't keep anything down at all.

    I'm happy that this worked for you though!

  • I was thinking of having a food allergy test to see what foods I may be allergic to. Expensive though. What's your thoughts?

  • True allergies are different than sensitivities. I have been through testing, twice in my life and then taken shots for many years for environmental allergies. My food allergies were not a big issue.

    Sensitivities are a very different issue that cannot be tested for. I knew I reacted badly to Taco Bell. It was a while after that before I knew the problem was msg. They can't test for aditives. Then after much reading and really paying attention to my health, I have removed processed foods from my diet. When I slip up, I pay for it. It isn't difficult and my health has improved dramatically.

  • I am thinking of having a food allergy test to see what foods I may be allergic to. Expensive though. What are your thoughts ?

  • Well I've heard that Aspartame can have detrimental effects on headaches as can sulphides.

  • Hi just to rule it out, do get yourself tested for Hughes Syndrome, my children had headaches like that and turned out to have it, as I do myself, with the right medication the headaches went away some of the time, come back to me if you need further information, as I run the patient forum for the charity. MaryF

  • It's a good thought, but the biggest symptom of that seems to be hyper-coagulation, and can be picked up by blood tests. I have so many of those over the last year that it would have been picked up on by now.

    Thanks for your message though x

  • I am afraid it is a disease frequently missed by doctors and neurologists. In fact it was just debated in the House of Lords, here are the symptoms: and also the blood tests which need to be done in a hospital, so that the time sensitive samples are not left hanging around for a courier! It is also possible to be sero negative and to take a long time to pass the tests: The type of migraines caused by Hughes Syndrome/APS - Sticky Blood do not respond to pain relief but do so with often Aspirin or anticoagulation. Patients often also have a Thyroid condition:


  • I will definitely run it past the consultant I'm seeing and see what she says. My mum is a neuro nurse so I'm going to see what she knows.

    Thanks for the tip!

  • Ok,

    As you can see with our list of recommended specialists, there is one at Addenbrooks.


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