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Showing all posts by "Wrighty"

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Posted in Left or right ? on 14 Mar, 2021 - 6:28 pm

Hi ,
Ive suffered CH on my left side for 20yrs then had 5yrs of no pain, then this year 2021 came back on my right side. Weird.

Take care.🙂

Posted in Steroids on 27 Feb, 2021 - 9:42 pm

Hi KBa78, I've suffered from clusters for over 20yrs , prednisone has been my saviour, at first I'd only take it for a week because of the talk about side effects but as soon as I tapered off my clusters would come back, so I chatted with my GP about how long I could take pred safely he said 3-4 weeks but always taper off, so I did and it works miracles for me with little or no side effects at all, but that's me every one is different chat to your doctor about the length and amount and see how your body reacts. I used to suffer badly with 3-6 attacks daily for around 8 weeks, same time every year, I was on verapermil everyday and using imagran and it wasn't really working plus didn't like taking heart medication and vascular constrictor.
Good luck.

Posted in prednisone on 23 Jun, 2013 - 2:16 pm

yes you have to stay on high doses to get rid of the beast. Like you say kim every time you reduce the dose it comes back.
Now I just keep taking it until the bout passes, I'd rather put up with a few little side effects then go through 2 months of 6 attacks a day

Posted in prednisone on 04 Jun, 2013 - 11:49 pm

high doses of prednisone does wonders for me i say anyone that suffering with ch give it a try.

Posted in Seasonal Triggers on 15 Jan, 2013 - 10:52 pm

Yes over my 13 years of suffering 90% of mine start in summer.

Posted in Tegretol on 15 Jan, 2013 - 8:14 pm

Hi Charlie, thanks for replying to my message. I have spoken to my neurologist about tegretol before and like you said its mainly for trigeminal neuralgia and wouldn't work for Ch. The main reason why I was putting the question out there was that it's on the list of meds now on our site, I will ask him again when I see him next. At the moment im going to stick to what I take, Imigran, verapamil and prednisone to try and break the bout which seems to help alot for me, anyway thanks again for your advise and noticed your currently suffering too. Be strong and take care.

Posted in Tegretol on 13 Jan, 2013 - 11:34 am

Hi,can anyone give me a bit of info about taking Tegretol for Cluster's. Ive been a sufferer for 13 years now im on Verapamil 180sr everyday for prevention,if i feel like a bout is about to start i take panafort to try to stop the cycle and then i take Imigran to try and stop the attack. The reason why im asking is that my mothers sister 40 years ago was diagnosed with tick delaroo which she explains the pain as electric shocks thru the side of her head anyway she started taking Tegretol many moons ago as she is 89 now and still takes 1 a day, this stopped her headaches an d has never had another one since is it worth trying for cluster headaches?

Posted in Deseril on 12 Jan, 2013 - 11:31 pm

I tried deseril a couple years back. Started taking them in the middle of a bout but they did nothing to stop my clusters my specialist said to persist for it takes a while to kick in but I was having 6 or so attacks a day and just couldn't handle it and went back to Imigran. The only bad thing is I end up taking like 6 Imigran tabs a day and my bouts usually last around 8 weeks, so towards the end of my bout. The government was trying to stop me getting them when I went to the doctors for another script they don't know. But anyway Deseril did jack shit for me.

Posted in Prednisone on 16 Nov, 2011 - 7:17 pm

Gidday chris, forgot to ask you. What sort of side effects do you get from pred?

Posted in Prednisone on 16 Nov, 2011 - 4:57 am

Um no, no real side effects at all. My feet get a bit ichy I don't know does that sound weird.

Posted in Prednisone on 15 Nov, 2011 - 6:40 pm

Prednisone is my saviour! I took a second coarse of prednisone 4 weeks into my bout and has stopped my cluster bout which normally goes for around 8 weeks of 4-6 attacks a day. So all I can say is prednisone I love you!!!!icon

Posted in CH - Do they ever stop? on 15 Nov, 2011 - 6:26 pm

Gidday jrod,
No I don't think they stop at 40,mine started at 28 years of age and now I'm 42 there's no sign of mine stopping. Sorry to say that I have read that they do just stop out of blue longing for that day myself. Good luck and hang in there.


Posted in Meds that work on 22 Oct, 2011 - 10:47 pm

I've suffered from episonic clusters for over ten years now and have tried lots of diferent meds in my time. Now I take verapamil everyday and imigran when I'm in a bout. But the best thing I have found is prednisone I take 75mg daily for 7 days then 50mg daily for 3 days then 25mg daily for another 3 days then stop. This can stop my clusters and sometimes put me into early remission, but also my clusters start up again once I stop the course of prednisone, I reckon it's worth trying who knows it might help you! Good luck and be strong.

Posted in Pain levels on 18 Oct, 2011 - 12:38 pm

Does anyone find that if your able to abort an attack with imagran or whatever you use that when the next one hits it seems to be twice as painful. It's like they say try to get rid of me I'll come back stronger! Going thru hell at the moment,damn clusters!

Posted in Returning Monster on 03 Oct, 2011 - 9:49 pm

The last few days i have been getting that funny head feeling around my cluster side of my head,started a prednisolone coarse to try and stop it before its starts,usually doesnt but sometimes it does.Fingers crossed,dont want to go thru 2 months of hell!please go away.


Posted in Untitled on 30 Jan, 2011 - 9:30 pm

wrighty said:
"i take 1 tablet of isoptin 180sr every day to prevent my clusters does enyone else do this"