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SUNCT/SUNA

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sarah79890
sarah79890

Hello, my name is Sarah and I have been suffering with SUNCT/SUNA for 12 years, although was only diagnosed 5 years ago. I have tried all medication without success, some of which made me very ill (Lamotrigine and Phenytoin gave me Stevens-Johnson Syndrome). I had an occipital nerve stimulator fitted in 2012 which improved the attacks slightly I think although it's hard to tell because around the same time I started to take high levels of oestrogen via HRT patches. I have always maintained that my headache disorder has something to do with hormones but I can't get to the bottom of it and the specialists seem to dismiss it. I have just undergone Microvascular Decompression which has been unsuccessful. I feel absolutely desperate at the moment. I'm not sure how everyone on here is measuring their attacks but a good day/night for me is around 30 pains an hour at 2/3 out of 10 on the pain scale which is manageable and I have never managed more than 8 weeks at this level. However at worst it can be 200+ an hour at 10/10. I experience pain on both sides of my head but mainly on the right and never both sides at once. The only pain relief I can get is through the use of Oramorph which is not ideal. I seem to get relapses every few years of which I am experiencing at the moment which started before the surgery and I can't seem to get more than 1-2 days at the manageable level; the rest of the time it's 7-9/10. I have done lots of research and have recently found a case in America of a man who has used Clomiphene citrate (a fertility drug) and has had complete alleviation of his symptoms - I am awaiting confirmation that I can start this drug. Other than this it would appear that my only and last option is deep brain stimulation which I am not keen to have. Three weeks after surgery I developed pins and needles in my hand and foot and shortly afterwards developed blurred vision in my right eye with a fully dilated pupil which righted itself 24 hours later. I can't have an MRI scan due to the battery in my chest for ONS. CT scan confirmed no bleed. Questions for fellow SUNCT sufferers:

1. Can anyone else link their SUNCT syndrome to hormones?

2. Did your mum receive hormone injections during her pregnancy?

3. Has anyone tried Clomiphene?

4. Has anyone had relief from DBS?

5. Does anyone have MS with SUNCT?

Have tried to keep this brief but so much has gone on in the last 12 years. 

0 likes, 5 replies

5 Replies

  • kevin79559
    kevin79559 sarah79890

    Posted

    Hi Sarah, so sorry to read how badly you are suffering, hoping that you can get some relief soon.

    I have been suffering from cch and sunct for just over 20 months, none stop,tried that many different types of tablets and so far nothing has worked.

    Also just been told that I have got a growth on putuitary gland behind my left eye. I mainly suffer from attacks on only the left side, very occasionally on the right. Just had another gonb injection, this has reduced the amount of cch attacks but has had little effect with my sunct attacks, loss count of how many attacks, guess that I'm very lucky that most are between a 3-5 with the occasional 8-10, which I still just about find less than a really bad cch attack,off to see Dr Lambru in the next month, to see if he can sort something out, been told that I have got several twisted blood vessel's around a nerve, as well as the growth, and will require operating on in the near future, then told don't worry about it.

    Sending you pf wishes kev x

    • sarah79890
      sarah79890 kevin79559

      Posted

      Hi Kev, so sorry to hear that you too are suffering - it's dreadful isn't it?!

      I hope your surgery goes well, I too attend the National, assuming that Mr Lambru is still there.

      Sending best wishes in return.

      Sarah

  • sunct7
    sunct7 sarah79890

    Posted

    Hi Sarah, I can't link my SUNCT to hormones but being perimenopausal may have something to do with it. I have tried various drugs and a GON block but currently Lyrica 3 x 150mg keeps mine manageable without intolerable side effects. Even so, 2 days a week on average I have worse or more frequent pains. I was strongly advised NOT to have MVD due to risk of stroke. My SUNCT was triggered by a dental extraction, and I had so much pain that I don't want anything that invasive. Drs (and dentists!) will always say they can fix things but they are only the facilitators. Remember that no one is an expert on you, except you. Stay strong x

    • sarah79890
      sarah79890 sunct7

      Posted

      Thank you for your reply. We all know our own bodies best don't we? Sorry to hear you are suffering too and hope you find more relief soon.

      I am normally much stronger than this but it's so bad at the moment I'm just desperate to find answers and resume some normal activities x

  • HanO
    HanO sarah79890

    Posted

    I can't share you my experience coz i got attacks of headache that respond to ordinary analgesics, but i share you my prayres to ALLAH to cure you and all those have the same problem.

    “Prayer is not asking. Prayer is putting oneself in the hands of God, at His disposition, and listening to His voice in the depth of our hearts.”

     

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