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ClusterBusters

shya

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  1. shya

    Please help me

    Try all these wonderful suggestions. Some things work for others and some things don't work for others-Its seems to be that every body/brain finds different solutions. My Husband was able to break his 20 year cycle of very bad clusters with Seroquel- an antidepressant. If you try everything and they don't work please try a RX of seroquel (if Doctor approved for you) ..for a few weeks to see if you get a result. All the very best! Hugs!
  2. shya

    Oh no what do I do

    Im so sorry he is in so much pain My Husband has suffered intense clusters that work on a clock cycle and are affected by weather as well. He has suffered for 20 years now and nothing helped him except pain killers to dull the pain, but still was not functioning blitzed out on painkillers. Mushrooms helped a bit though. Finally after reading the work of Todd Rozen at the Mayo Clinic and searching for a medicine that would go straight to the hypothalamus we tried Clomid but did not quite last longer than 1 pain-free month- then we found Seroquel (an anti-depressant that effects the hypothamus) My husband is now cluster free for almost an entire year! Still minor headaches, but ZERO clusters now. Please look into this!
  3. shya

    SEROQUEL stopped the Clusters!!!

    Thanks CHfather for your note-wow you have a great memory! He had tried oxygen before and felt it did literally-nothing. We never did try seeds, only mushrooms. They did help but they never broke the cycle-they just muted them a tad and caused a slight disruption to clusters, but no real break of more than a week. In the thick of the constant pain of 2014 the mushrooms were definitely a help. The clusters were SO bad and so constant that I think the Doctors were at their wits end with him and thats when the heavy duty demerol injectables we given-If I told you the amount he got up to during that time-you would be horribly shocked. It was great when he was cut off because he did start to improve a bit. Seroquel was introduced shortly after he cleaned that crap out of his system and when it kicked in 1-2 weeks later -His cluster cycle was almost completely and totally broken. Its practically almost one year without the poker-stick,screaming,puking,dying pain. So I wish others would please TRY it... and yes, I forgot to come back to tell you all..I bet this the problem. People take it and it works and start living and forget to update!! The side effects are not great. Moody/low sex drive. But well worth not having brain imploding pain I can't believe Im sitting in a rain storm, and my husband is happily working away. A simple rain cloud use to set him off for days.. We are SO MUCH BETTER!!
  4. shya

    the beast is back

    Ive posted our journey in this section, but please ask your Dr to try Seroquel, if only to break the pattern of attacks. Its terrible for sex drive so you will want to stop before your wedding..but it completely broke my Husbands worse year of attacks. Has not had one in months and months. Do you get clusters in hot countries near the Equator? My Husbands gets zero if we are in Mexico or cuba
  5. shya

    Was PF for almoust two years now its back!

    I just posted our journey. Please ask your Doctor about Seroquel, an anti depressant that goes into your Hypothalamus. It stopped my husbands clusters for 8+ months now and still going strong. Best of luck to you!
  6. So I have not been around here lately- we hit a very dark place in 2015 with over 6 months of major narcotic use of Demerol. The clusters came constantly and furiously. With the intense weather that Winter, the fall down after a shot- anything would set my poor Husbands head off. During that Winter we had tried clomid that Dr Todd Rozen was using at the Mayo Clinic. We had a break in the headaches from clomid, but they came back again after a 1.5-2 month slight break of only one headache weekly. Finally the Doctor got scared and tapered him off the Demerol and that settled the Clusters down a bit, and we added Percocets and some medicinal cannabis for sleep and injectable gravol to settle him during an attack. This helped but was still not a complete solution. We asked his new Doctor for a medicine that could get into the Hypothalamus; as we are completely sure that is where the pain is originating from; as per the research papers. He offered Seroquel an anti-depressant. We were barely hopeful but tried it. Success! Within a week Clusters were tapering off! Between March and December he has 2 or 3 clusters, one in april, One in May and one in June. June was the very last Cluster. We couldn't believe it, and felt for sure when the bad Winter weather rolled in, he would be a mess again. Here we are in January and still no Clusters!! He gets mild headaches and neck pain, but the crying-on-the-floor Clusters are gone. I should have updated sooner. Its been so different living a life pain-free! ***The seroquel completely effects your sex-drive and sex hormone levels. You will need to take extra hormones and taper off and stop once a month to feel any sex drive. But this is a small price to pay for living pain-free for the first time in 20 years. No major effect on mood either way
  7. shya

    Dr. Todd Rozen

    Did Dr.Rozen have you on Clomid? We are currently following his rx of Clomid and its decreased my husbands clusters by 90%!!
  8. shya

    A brick wall between me and life

    My Fiance was a bit cuddly when I met him but he soon switched to my Vegan diet due to my philosophy that Animals are are not products gor us to use.His weight in one year change from slightly over weight to slim and fit.He's still amazed.We dont really exercise other than a walk or gardening. Vegan food is the food thats under the cheese and the food beside the meat and no eggs.
  9. By my calculations he clusters nov-april worst but this February has been the worst hes ever been.Hes on demerol almost daily ...but they never really go away.Just cant believe how brutal it is.Its the most unfair thing :'(
  10. All really good points.Thank you.Busting helped but only if he did it every week and he hates it..so its very difficult to get him to take it.It helped do much last February and brought the severe attacks down to only one a week.I am reading about indomethcin and going to look into that.Thank you
  11. Hi everyone. I Marrying the Man of my dreams in two months and hes jn major cluster headaches crisis right Im so worried...maybe we should cancel all the plans? Ever since we got back from vacation in Mexico his head was in pain daily for 13 days straight now hes every other days with a few breaks.We wil try magic tea again and ges on heaps of testosterone too and Im just parting he will start come out if this as the Weather gets better.Advice , experience on weddings days? Thoughts? :'(
  12. shya

    Sex

    Have any of you CH sufferers found sex will stop a CH? My boyfriend would often wake up with K3-5 CH very early in the morning (4-6 am) and be in quite a bit of pain. For whatever reason, we actually found that sex would end the attack.
  13. My Boyfriend gets a Demerol shot and the K8-10 is gone within 7 minutes.O2 does little to nothing for him.He has been given Morphine and others but the Demerol is the only things that works
  14. My Sweetheart gets chronic, really bad CH and we NEED to do the MM right away as the Clusters are getting so bad due to weather (overcast) we've been in the Emerg already this week and might be heading back again!! He had to take a Relpax today, but we had planned to do the MM tomorrow...what will the interactions be? We cant wait anymore, and he's not getting a break from the CH at all to clear out the meds for 5 days.. HELP!! :'(
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