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MoxieGirl

What have you tried?

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I have tried so many cant remember them all . I will verapamil bad side affect started retaining fluid 15 pounds in 2 weeks.  I want to try MM bad need to get some spores. That is my next experiment hope it works!!!!!!!!! As soon as find spores and try will let you know if it works.

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I've tried several things over the years, Imatrex 50mg didn't faze it, nor did O2. I can't remember everything I've tried but the only thing that seems to work for me is Zomig 5mg nasal spray, but at $175.00 for 6 doses it's expensive at least for me. I was free of these cluster headache for about 3 years until about 2 weeks ago & they're back. After 3 days until I was able to get a new prescription  for Zomig I was miserable, but it does work for me.

 

bigmark007 

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Hey there bigmark,

 

Whenever someone says O2 hasn't worked, I know what they mean. It didn't work for me either.

 

The thing is though, 99% of the time it didn't work because pathetic low flow rebreather O2 was prescribed. At this point I think I may have seen a thousand CH'ers report giving up on O2, not knowing they'd been given a bad prescription. It's getting kind of old LOL.  :P (I was super active on another message board before this one, blabbing away on thousands of posts there too, so I guess I'm ready for my special lollipop now or some vigorous slaps across the face and a command to shut the BLEEP up. Or both).  :P

 

ANYHOO, whenever someone says O2 hasn't worked, I want to ask if high flow 100% O2 has been tried? (When I found out about the high flow 100% O2 and tried it, it worked for me, as it does for almost all of us).

 

And for forever now, I've been suggesting that people who have seen results from high flow 100% O2 consider identifying it as such when recommending it to newcomer CH'ers and not just suggest "O2" or "oxygen", which most everywhere except for message boards still means the weak, ineffective crap. 

 

BTW, there is a lot to learn here about super effective preventatives too.  :)

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Lithium strikes me as one of those drugs that is REALLY going to get some widely varying reactions from individual to individual. I had tried it with no dramatic improvement for my CH, also no dramatic side effects.

 

Personally I think of it as being low on any modern day list of stuff to try for CH.

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I really like when they try to prescribe anti-depressents for CH. I have been offered about every one of them on the market!!!

 

1LS, you are the only other Cher that I know of who has been prescribed Thorazine!!! :rolleyes:

 

Oh, add Stadol to the list.AKA Butorphanol NS. And Enderol.

 

I think that about every anti-seisure med is on the list too. In their efforts to help they really do offer some 'strange' solutions.

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so I am back digging around for more hope and found an article on Botox. Apparently it was like an SPG Block but used Botox instead of steroid/lidocaine. I think I saw only one person had Botox. I may have missed others but was it injections all along the forehead or...?

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Botox works for migraines some  of the time, but will do nothing for CH,,,,,,,you get it in the forehead, a little higher in the head, by the ears, side of head back of head and places in the neck...I tried acupuncture, chiro, even went to the dentist to see if something wrong with teeth.....I am looking at a lot of these drugs, and I have been on LOTS of them to no avail.   Right now prednisone again, for 10 days,,,,,,,yesterday was day one,,,,,,,,,and I actually slept all night and NO CH all day and all night, that is a first in months except when I was in Las Vegas.......Tomorrow I am off for the Nerve block, then Monday for MRI,,,,,and hopefully will still be pain free....A lot of these drugs are scary, my doctor was going to put me on Lithum, but she would have to monitor my liver, kidneys and something else, and I saw a post in here where someone was taking something for sleep, sera something,, and metropol for blood pressure and she was PF,,,so told my doctor about it, and she changed my prescription to that instead of Lithium and yesterday was my first day PF,,,,,,not sure if coincidence or not, but fingers crossed, will let you know

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I would imagine the prednisone would be the most likely thing to credit for your first day pain free, Suzz.

Since you've been on it before, it's probably not news to you that the CH can return with a vengeance after the taper, so that's something that should be braced for. I guess I'm mentioning that here more for others who may not have experience with prednisone.

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oh and that is what it did,,,,,,,totally out of control,,,,,,,,starting getting CH daytime, night time whenever it decided to strike !!!!  I go for nerve block tomorrow, so hopefully that helps in the long term and now have O2 so hopefully Im covered.  She gave it to me hoping to break the pattern, so guess we will find out, this time for 10 days last time was for 7 days,.  O2 can you take kind of as preventative? or only when you get CH???

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When I feel one coming on I know if I catch it early enough it won't get to 100% if I can get to sleep in time.

 

I take three Aspirin

I lie on my back in the bathtub with my face under the shower - the sensation of all the water confuses the pain signal and I can't actually feel the pain behind my eye while I'm under the shower

I have to be lying down so the water is going at enough velocity that it makes my face numb

I stay there for as long as it takes for me to feel like the drugs have started to kick in - usually half an hour at least

I get up and go straight to bed and usually fall asleep within ten minutes

When I wake up, the pain's usually gone.

 

For me, this works every time.

 

If I don't catch it in time, I do pretty much the same thing, but go to bed after I vomit.

 

I've worked out my triggers are smoking (back when I used to), and significant disruption to sleep (i.e. working all night) or significant disruption to meal patterns. Giving up smoking was the best thing for me in terms of reducing incidence of cluster headaches.

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I'll have to add my list when I get around to it. How can you people possible remember everything ?  :o 

I couldn't. Might be due to damage done by some of them though. At the moment I will just leave you with this image - something funny from our finnish site :)

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I had a block on Thursday and there were minor complications...i.e. Half of my face was the size of a pumpkin. I asked about Botox when I was there but the doctor did not seem to think that it would do much. I know that monitoring is normal for Lithium so, I was prepared for that but, it just seems so outdated... then again none of the new drugs have worked either.

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One that I didn't see mentioned that I took for four years was clomiphene citrate (Clomid).  I do believe that it helped me go from chronic to episodic, but there are side effects.  Dr. Todd Rozen wrote a paper a few years back after using it on a chronic CH patient.

 

alley

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Update- after much thought I realized I was on HEAVY doses of Dilaudid. This explains (I'm guessing) the remission. This weekend I intend to try a low dose of LSD (half a "hit") as I've read that it may help break the cycle. I'll keep you posted. 

Trying to control my dark passenger has become my mission in life. I'm guessing there is no one cure that will work for everyone. 

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Hi Gene. Yes, keeping this 'dark passenger' squashed out of sight and mind and far away is our goal!!!

 

Have you read any of the Clusterbuster Files? You need to be free of many meds before trying to bust.

 

You should start a new thread for yourself. We are all here to help.

 

ATB

 

spiny

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