My dad had “The Beast” arrive at his door about 6 weeks ago and was officially diagnosed with CH’s about 3 weeks ago.  I can not begin to say how grateful I am that this message board exists!  Everyone on here shows so much compassion and concern for other sufferers.  And all the information on this board has been so helpful in my family’s quest for remedies!

My dad has seen 3 doctors, all which want to prescribe different medicines from hydrocodone to prednisone to treximet – and more - but nothing has put a dent in the episodes.  He currently is taking Depakote as a preventative and just received his O2 tank yesterday.  We need to make some adjustments on the O2 (regulator, non-rebreather mask) but it has already helped alleviate some of the pain.  He has taken melatonin for the last 3 nights and has not had is usual 2:30am headache.  I am hoping he can start the D3 regimen soon and we are stocking up on energy drinks.

I know my family is only at the beginning of our journey with my dad (and we are open to any suggestions), but I wanted to thank everyone.

      If he's lucky his first episode will be over in 2 to 6 weeks, many of my episodes last 8 weeks so if it does end in few weeks it might be hard to tell if the prevents really worked, but that doesn't mean you shouldn't try. Do try to stay away from the pain killer type drugs, they usually don't work anyway and often create other problems. There are many people here with more knowledge than I that I'm sure will be offering their input.
     It's truly great that your family is in on this, you may not be able to physically ease his pain but having your understanding and support is really important to him. You've got a learning curve ahead of you and the more proactive you are the better. Hopefully he'll be episodic and a very long time will pass before the next one

      Welcome and Good Luck,      Sean

Unfortunately this will likely be a long haul with the awful condition. There is a lot to learn, but you seem to be on the right track. You appear to have a doc willing to listen and try new treatments. You're supporting your Dad which is also very important. This can be a debilitating and very lonely condition at times, support is a must if the trip is to be worthwhile. I'm glad you found this site early. There is a lot of good information here and a lot of good people here. You are among friends who understand, and that is valuable too. Don't hesitate to reach out when it all gets to be too much. The boards are checked often and while we might not be right there, more than likely, well will have been there and can offer some advice, or a kind word to help you along. Good luck and best wishes.

Rep

Tugn3 wrote on Jul 10^th, 2013 at 6:17am:

See? There is hope. And you're not alone. Please see my response on your previous thread. God bless. lance