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I should be a scientist lol

Posted , 7 users are following.

chrissyboo
chrissyboo

Hi all,

It had always annoyed me that there seemed to be no cohesion between my symptoms (If you know what I mean) so I have been writing them all down and it suddenly hit me that each and every one is controlled by the hypothalamus!!!

And seriously it is every one!

on Googling this it seems scientists have only recently thought of this but tests have yet to confirm it. I find this shocking as I by no means posses high intelligence and can only assume that it comes down to lack of funding.

Does anyone have any views on this?

Krissy

0 likes, 14 replies

14 Replies

  • artistmike
    artistmike chrissyboo

    Posted

    I have almost definite proof that the Hypothalamus is involved, as coroborated by my doctor.

    For about twenty years I suffered from Cluster Headaches, a particularly unpleasant form of very extreme headaches which, with me, occured daily in periods of about four months of every year and for which I was treated by the Princess Margaret's Migraine Trust in London. ... These headaches have been shown to be caused by a problem in the Hypothalamus.

    I was in the middle of a usual period of these headaches in mid-summer when I suddenly went down with Glandular Fever and shortly after that, with ME/CFS.

    The day that the ME/CFS started, the Cluster Headaches stopped suddenly in the middle of the cluster period and to this day I've not had another attack and it appears that when the initial ME/CFS occured it damaged the part of my Hypothalamus that was causing the Cluster Headaches and coincidentally stopped them.

    My ME/CFS consultant wants at some time for me to have a brain scan to explore this but unfortunately they don't have the facilities at my local hospital ( I'm in rural Devon) and travelling to somehwere that does isn't easy for me.

    I seem to be one of those fairly rare cases where two conditions, occuring at the same time, shows up the cause of one of them...

    Mind you, knowing that the Hypothlamus is involved and no doubt damaged by the ME/CFS isn't going to help much when it comes to treatment....

    • jackie00198
      jackie00198 artistmike

      Posted

      Wow! I'm in the exact same situation as you. And I never put the two together. That is, I've had cluster headaches for many years--about 50 years. In my case, I had episodic clusters. I'd get them every 2 years for 1 month. 15 years ago, my clusters seemed to be changing from episodic to chronic, and I became very stressed out. At the same time, I was exposed to a flu and got I'll. That was the beginning of my me/CFs. But here's the ironic part. I hav my had a cluster in 6 years. Sometimes they can disappear of their own accord. But I never thought that the CFs might have resulted in them disappearing.
    • chrissyboo
      chrissyboo artistmike

      Posted

      Wow you seem to of had great care! I've seen my neurologist three times in as many years and never said much, he diagnosed me by letter and discharged me

      me.

      Yep your right that it isn't going to help but at least I know that it is caused by something being wrong rather than imagined.

      Krissy

    • artistmike
      artistmike jackie00198

      Posted

      That's fascinating Jackie to hear that you've been through a similar situation, I think we are quit a rare pair and my consultant will be very interested to hear of another case of ME/CFS interupting Cluster Headaches, which points to the same situation with the hypothalamus.

      My Cluster attacks happened every year for four months and the headaches were daily for about two hours... Sometimes I think that despite how ghastly the ME/CFS is, it did me a huge favour. Like for many others, the headaches were at times almost unbearable and I'd been through all the treatments imaginable, usually resorting in me being hospitalised on Morphine for a week or two towards the end of each cluster...

      It seems that some of us are just unlucky when it comes to our health, though as bad as the ME/CFS is, at least I consider myself very lucky that I'll never have to suffer that particular pain again....

       

    • artistmike
      artistmike chrissyboo

      Posted

      Well as you've found out Krissy, getting much in the way of treatment or information from Doctors isn't easy with ME/CFS and there are various bits of research heading off in all directions, but none of them producing much in the way of results

      I'm confident though that the involvement with the Hypothalamus will be confirmed one day, but I suspect it will be only one element of damage that we have sustained through whatever virus hit us. It's a highly complicated condition and I think it's going to be a long while before we sufferers get any real help.

    • jackie00198
      jackie00198 artistmike

      Posted

      Yeah. The pain of cluster is considered to be the worst that a person can experience. Worse than the pain of childbirth. I did find a treatment that was pretty successful in preventing or aborting the pain when I was in an episode. I'd inhale oxygen or use imitrex. Also verapamil, a calcium channel blocker, is quite successful in preventing cluster. I saw a foremost expert here in the U. S.

    • artistmike
      artistmike jackie00198

      Posted

      Yes I used Oxygen too and prednisolone in large amounts which sometimes helepd break the cycles but I invariably ended up on Morphine. It's certainly an unbelievable pain and as I say, sometimes I thank the ME for what it did....:-)
    • jackie00198
      jackie00198 artistmike

      Posted

      By the way, I've had ME/CFS for over 15 years. When I first got it, I learned that the hypothalamus-pituitary-adrenal axis was damaged by this illness. So involvement of the hypothalamus has been known for a pretty long time. 
    • ChrissyC
      ChrissyC artistmike

      Posted

      Hi Mike and Jackie and any other CURRENT cluster headache sufferers who might have been drawn by this thread. I'm sorry its so long after you were all discussing this but my own M.E. has meant I've been off computer for a while and I'm only just slowly catching up.

      My husband who is not an M.E. sufferer has cluster headaches. He can sometimes go a year or more without them sometimes only several months. But I wanted to share with anyone still struggling with this the medication that has worked for him. At the onset of the 1st headache of the cluster he immediately takes a nasal spray called Immigran. Its produced by GSK and contains sumatriptin. This deals with the headache within 10 to 30 minutes! He also takes a Verapamil tablet mentioned by Jackie. He continues with the Verapamil once daily which takes a few days to build up and kick in with putting a stop to the whole cluster. In the meantime he deals with each headache as it comes with a nasal spray. Eventually within a few days he reaches the blessed point at which he has slept through without being woken by the headache and the Verapamil is doing its job. He continues to take it until he has gone a good week without a headache. But the ability to deal with each individual headache as it happens within half an hour instead of the hours of agony previously is an absolute blessing and I bless my GP for researching and prescribing these sprays. Now if only they could find something for my M.E. eh? But I would love for this info to help somebody!

    • jackie00198
      jackie00198 ChrissyC

      Posted

      Yes, I used to take the nasal spray Imitrex, which, like Immigran, contains Sumatriptan. Very effective in aborting the headaches. Also very effective is inhaling oxygen with a face mask. Has your husband ever tried that?
    • ChrissyC
      ChrissyC jackie00198

      Posted

      Hi! Tee hee I've just repeated this to KMRC on a slightly later thread and referred to you again. I'm gradually catching up but pacing it. You know! That's very interesting re both the Imitrex and the oxygen. Thank you! I know the Immigran is very expensive but fair do to our surgery there's never been any hesitation.

  • Beverley_01
    Beverley_01 chrissyboo

    Posted

    Hi Krissy,

    I was at the CFS/ME clinic on friday and this may suprise but, my specialist nurse told me about how the sympathetic nervous systemn is thrown out with cfs/me and , yes, the sympathetic nervous system is controlled by the hypothalmus ! 

    B

  • jcnps
    jcnps chrissyboo

    Posted

    Hi Krissy,

    There has in fact been research in this area - it is just not very well publicised and is so far inconclusive and no magic cure!!

    MT - MIckel Therapy was founded several  years ago - like The lLIghtening Process works for some but not for others.

    There is much that is still unknown about the brain and the way that it works - what it produces/why/how and how illness/truama/etc affects it.

    I suggest you keep digging, sharing and trying stuff - judicially!

    We are not machines and what fixes one person doesn't fix another - we are also all ever changing and evolving - thats whaat can make it so frustrating - i have had to change that to 'interesting' in order to keep going!

    Thanks for you post - led me back to looking at the hypothalmus and it is a fascinating and complex powerhouse.

    Kind reagrds

    Julia

    • chrissyboo
      chrissyboo jcnps

      Posted

      I just wish doctors, social workers etc etc etc would take ME/Cfs seriously, I would gladly offer myself as a guinea pig or whatever.
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