SEROQUEL stopped the Clusters!!!

[shya]

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 

[CHfather]

Shya, this is great news.  I remember how hard you were searching for solutions.  From what can be read online, Seroquel seems not to work very well for most people with CH -- but maybe the ones it works for don't come back, as you so kindly have done, to let people know.

 

I suppose that most people reading your post will be stunned, as I was, to read that a doctor prescribed demerol and your boyfriend kept taking it for so long -- and then he started taking percoset.  That stuff rarely helps with CH.  He had enjoyed some success with busting as I recall, but didn't like the effects.  He must have really hated those effects to take that other stuff for so long.

 

I just have three questions. I recall that he hadn't had a top-quality oxygen system when you were here in the past.  Did he ever get that set up and try it?  Did he ever try seeds as a non-hallucinogenic busting method?  And does injectable sumatriptan not work for him?  Well, four questions, now that I think of it -- wasn't trying indomethacin a possibility at some point?  Did he ever do that?

 

I hope his success continues, and thanks for letting us know.

[shya]

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!!