Leaderboard

My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments on ch.com that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's controllable. Best Jon

Ok, thanks for the suggestion Spiny, I really appreciate it. Hopefully the doctor can help me. He usually boosts my spirits. I don't think the topamax is doing much anymore, had two bad hits today already. Ugh, so tired...

Most people that I know who have taken Topamax refer to it as Dopamax and hate it. My neuro prescribed it for me and told me to check my internet sources to see how it is helping. Well, it causes weight loss and I was already down to a stick figure. Never took it. Especially after reading that a lot of people really hate it. I did not see the pressure issues mentioned when I checked for side effects on the Net just now. But I read over just the main side effects. Didn't go to the other ones that only affect a few people. Please bring this up when you see your doctor. My only side affect from Verap was blood pressure went too low. And dry mouth. Your doctor should be able and willing to let you try the Indomethacin. Definitely explain your situation and ask!! Now, I will cross my fingers that you get it and it works for you. If not, then you will have confirmation that it is not hemicrania. If that is the case. if your BP is good you could increase the Verap. Chers take very large doses of it for relief. For CH, you might find that more Verap. allows you to taper off the Topamax and feel better. ATB

Wow. That length of time for an attack is different. Most don't go over 3 hours, but some do. Do you need to move around or do you need quiet and dark? There is a thread on the Clusterbusters Board that describes how to use your O2 to the best advantage. Ii is work actually. How are you using your O2? You need not show all the symptoms to have CH. But you must show some of them. I gather that your neuro did a scan of your head? And has anyone given you Indomethacin for a trial run to check for Hemicrania? Some of your symptoms fit that type of condition as well. Like the length of your hits. But you do respond to standard CH meds. Hemicrania does not respond to Imitrex usually. So, the question remains. Many Chers take up to 960mg of Verapamil. If you have low blood pressure that prohibits a high dose. Perhaps your neuro could try upping the dose for you if your BP is ok at the 360 you are now taking. I would suggest that you also read the D3 Regimen in the Clusterbuster Fiiles as well. It has been a huge help for many of us. Simple and easy to try for a few weeks to see if it helps you. ATB

Not sure if he knows the definition of chronic. Some authorities say only two weeks PF for a year and other say four weeks. Many of us go thru that fear when we have a cycle that is not the norm or lasts longer than usual. I have read that for some people they actually find it easier! They say it beats the wondering if they will start a cycle this week or not. Sorry, that is the best I have to offer. What is he doing for his CH now? Has he found no way to get it under control at all?

I used imitrex for 12 years plus. Then I found this place and alternatives. I hope and pray that I'll never use it again. It works short term but made it worse for me long term. There is alot of knowledge here. As well as alot of support. I found this place a year ago and its been the best thing I've found for me in 18 yrs of fighting the beast. Keep reading and asking I've found relief and I feel like I owe it to "us" to help. Because it sucks thinking there is no hope. But there is and you have found it.