Cluster Headache

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I am writing this as at my wits end, my poor husband been suffering for a good 9 years with what has been identified as cluster headaches, he has a brain scan booked for tomorrow as I begged the Dr to please eliminate anything else.  The latest episode has been over 17 weeks now and he looks and feels like he is dying, the pain is intolerable, he is doing all that he can to stop killing himself because of the pain, he in in misery every second of every day, he his either very very angry or in agony with the pain, I am terrified that he will overdose as nothing he takes works apart from the nasal spray but you only get so many of these prescribed and even they take a long time to work.  He is now struggling to eat as it takes away his appetite.  I just feel so helpless, my loving happy husband has disappeared and I just dont know what to do

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  • Posted

    I'm so sorry you and your husband have had such a horrible time. I don't know why doctors think because they give the headaches a name ( totally mis diagnosed in my case) we are supposed to be able to live with pain. I get very angry that to keep an animal in pain is illegal but apparently ok for a person.

    if the scan shows nothing it might be worth looking for triggers. I can have horrendous migraines triggered by tiny amounts of certain foods. I tried a tiny piece of chocolate the other night --- and I mean tiny---- I was dizzy, disorientated and nauseous for hours. Only drinking lots of water stopped the headache developing. My triggers include the smallest amounts of alcohol, coffee, chocolate, most spices, pineapple, ginger.

    the headaches worse than the moraines turned out to be a neck problem, missed by 7 doctors, diagnosed by a chiropractor. I didn't really have a pain in my neck as such, just the most awful headaches I've ever had. Only stopped by morphine in hospital and then treatment by the chiro after she diagnosed it.

    get the scan out of the way, hopefully it'll show nothing sinister and take it from there. 

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    • Posted

      Thank you so much for your response, appreciate it is so much as you can feel like that the only person in the world going through this.  The last few weeks have been hellish with watching him in so much pain and also putting up with the violent mood changes.  

      Scan was last Wednesday so await the results 

      Wishing you all the very best with your own headaches


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  • Posted

    I have also experienced headaches for about 9 or 10 years that have been identified as cluster headaches as well. Depending on the severity and duration it sounds like he needs to do multiple things. First off, I am hoping your doctor made you aware of rebound headaches, these are caused by taking tylenol or advil which cause a rebound headache if you take too much, I'll get them if I take ibuprofen more than one day in a row. 

    Atenolol is actually great for headaches. Just something to try, it is very safe and harmless. 

    I am on a nightly prescription called Tizanidine, it is a muscle relaxer that slows nerves from going to the breain, it also knocks me out so I can finally sleep all night and usually dont wake up with a headache anymore (which iss a miracle!!!!) The last resort I use are pills called Maxalt, anyone who gets this prescribed to them only get 9 a month due to it increasing the chances of strokes. But let me tell you, it'll knock out a headache/migrane!! Everything he does will effect his head; not getting the right nurtients(make sure he eats breakfast, lunch, and dinner), too much or not enough light, caffine (some days it can help but most likely will cause a headache later on in the day so I would steer away from caffine), gets lots of sleep, but not too much as that could cause a headache as well. I know this isnt easy for him, but the less stress the better! I was stressed at work and it gave me a headache/migraine for 2 weeks. I would go see a neurologist, chiropractor, and everything in between. Make sure his bed isn't causing any problems, maybe even invest in a water pillow! I would start over and think of everything he does during the day. Exercising is very important but with a headache it is incredibly hard and painfull because his head is probably already pounding. So maybe go on a few walks per week and move up the amount of walking each week until he is comfortable with more exercise.

    I am sorry to hear about this, it can really take a toll on everything in his life, but it sounds like he is very lucky to have you!! 

    Maybe see if the doctors can also give him something to prevent depression or treat it, its one thing having to limp around cause your ankle or knee hurts, but your head hurting is just unfair! Even if he says he is fine just ask the doctors to get their best opinion. I would go home on my breaks and cry for what felt like forever. I wish someone drug me to the doctor, you just never know!!

    Well goodluck, I hope the best for you guys and this situation!

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    • Posted

      Thank you so much for taking the trouble to send this message, very much appreciated.

      The meds you mentioned are only available in the States I think but have taken on board all your other comments.

      He had a brain scan last week which we waiting for results for.

      last couple of weeks been hellish but so far no attack yesterday and he feeling ok today which a miracle.

      Wish you all the very best with your own headaches 

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