CS and Cluster Headaches?

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Hi all, I have had a "hump" on my upper spine at base of neck over a number of years.  This now shows as a ) shape and is, effectively, my discs all collapsed into one another with CS.  My lower spine is also affected by this, lifting or moving (eg when painting) means a couple of days of extreme pain afterwards.  I have also recently started to suffer from cluster headaches (awaiting neurosurgeon appointment).  I have read there is a link between CS and the impairment of the hypothalamus though constriction of Cervical Spinal fluid.  Does anyone with CS suffer from cluster headaches?

My father has normal pressure hydrocephalus and he also has the distinctive CS "hump" at the base of his neck.  Also, I very rarely suffered from headaches at all until earlier this year when I suddenly developed these "suicide" headaches.  There must be a link........

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  • Posted

    Can I suggest posture exercises in this case please?

    Stand with your feet, hip width apart. Do not lock your knees straight, keep them loose. lift your chest as much as you can comfortably, then imagine a cord attached to your head from above, this 'cord' is holding your head up straight and is running all the way down your spine. Let your shoulders completely relax, do not force them forward or back. Try to keep this posture as you walk and sit... Do not force anything... Sounds simple but posture really does help...

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  • Posted

    Hi maggiem

    I have the same problem. I have tried what roz11934 has suggested but after time this did not work for me but it does not mean it will work for you. My posture is as straight as anything (steel rod) from top of spine to bottom of spine so i am what they call poker straight apart from the "hump" it is not noticable really but it does sometimes hurt or ache depending on what i do!! I cant have an mri scan as they are afraid it might move the rod even though i have hade it in for 49yrs (59) now.as roz said posture is important have you tried to walk with a book on your head (i know it sounds strange) but it might help with your posture? when you are in pain put some heat on and just gently lean back it will ease it and therefore you are gently streching your neck without doing any harm.If you are going to do anything strenuos take some pain killers before you do anything it might cut the pain down. I have often said in posts on this site little and often and it is not what you cant do its what you can do!!! I hope this and other posts helps you 



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  • Posted

    "Suicide" headaches sums them up well!

    although mine are not cluster headaches, I have a headache 24 hours a day, I've been told it's to do with my neck muscles being in spasm all the time, they vary in degree by how bad my neck is.

    I don't have any curvature in my cervical spine, in fact the direct opposite it's dead straight, I've had the discs at c5/6 & 6/7 removed and grafts of bone for 5/6 and metal spacer for 6/7 inserted.

    I have a massage every 2 weeks and see the Physio every month, heat/ice/tens machine offer a little relief, biggest help has been a compression shirt from Pelham and Strutt, I have both the long sleeve and short sleeve shirts, yes they are expensive but can reduce the pain from "screaming in my head" to "hurt" which for me is at least something, as with the headaches and the nerve pain from the damaged nerves is enough to drive me very close to the edge.

    I've been known to ask complete strangers to pull my head off in desperation, so I do sympathise.  I'm also told to "pace" myself which is so much easier said than done.

    its all about finding what suits you to "manage" the condition, sorry probably not much help.

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    • Posted

      Hi gadgetgeekhamps

         Ican sympathise with  you on the headaches because i have been there and still there i am the same where pain is concerned becuase i am in pain 24/7.As you said you manage the condition it does not go away(mine doesnt)! i  have had it long enough to cope better i suppose but you never get used to pain because it is not natural to have pain all the time!!!  I have tried the tens it did nothing for me cant use it for rod made it worse on morphine(oral) and morphine patches and still no respite!!! I have had 49 yrs to come to terms with it because when i was younger you do not let it take over your life you take over it. I done things that kids done(climb trees) hard to do when you have a full body plaster on and you are only 10!!! I have been there and done that and got the tee shirt but you have to try and come through the other end with a smile no matter how small it is.As you say it is what works for the individual trial and error just try anything and everything well sorry for rambling on and hope it goes well for you rolleyes   


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