Welcome to the board Josh. As the saying goes, I'm glad you found us but sorry you had too. This pain really sucks. Fortunately, you've found the best place on the internet for support and information. You've also found a family.
hayduke wrote on Sep 8th, 2008 at 12:23am:I'm taking 180mg of Verapamil every 24 hours and 6mg Imitrex shots at the onset of the pain, which almost always helps within 5-10 minutes. I've been battling my insurance company and incompetent pharmacists to fight to make sure I get enough Imitrex to actually treat my incidences. The insurance company rejects my prescription every time, causing a delay in when I can get Imitrex. During these times I rely on the samples my neurologist has. I'm blessed to have insurance at all, but why the hell can't they stop being such penny-pinching jerks and give me the medication my doctor knows I need?
Most insurance companies have a perscription limit override form available. You take it to your Dr and he/she indicates how much you need for your condition. I went this route with Blue Cross Blue Shield and upped my monthly supply to 12 / month.
Having said that I rely on Oxygen for my primary abortive. It works great if you get on it quickly and use it correctly. Imitrex scares the hell out of me because of the stress it puts on your heart and vascular system. So I figure O2 is a good alternative if it works. Unfortunately it only works for about 70% of us.
180mg is a low dose of Verapamil for CH treatment. Some use levels >1g. My magic number seems to be ~400mg. I've also had much better results using the regular release formulation. I use it 80mg 7am/80mg 2pm/120mg 10pm.
Preventatives are funny things. They can really mess with your cycles and there are always side effects to be balanced against the relief they provide. Some decide to go without and rely on abortives only. It really is an individual choice.
Quote:I have a couple of symptoms that tend to happen whenever I get a cluster that are so consistent and I haven't really heard some of them mentioned here. I'm wondering if others have them too. I definitely get congested on one side of my nose/sinuses during the actual attack. Once the pain hits, I almost always have to move my bowels (not glamorous to admit, but hey... nothing about CH seems to be) and I know the attack is over when the pain has subsided, nose is clear and I urinate. I tend to spend many of my attacks writhing in pain on the toilet, or at least spend a good part of them on it. I have a hard time sitting still on the toilet, but since I have to go, I have to be there.
I've heard this before. Bowel movement is a frequent occurance for me too. But it doesn't happen all the time.
Quote:In some of my recent clusters (over the past two years or so), I've been also getting chronic neck pain (it doesn't go away after an attack and intensifies just before an attack). I keep thinking the neck pain is a trigger for the attack, but I'm really unsure. I've been going to a chiropractor to deal with the neck pain, which I've found to be reducing the number of attacks per day (I think... not sure if it is that or the Verapamil actually working).
I've never heard of Verapamil causing this. I'd think it is more related to the stress of the attacks themselves. We all tense up when we feel an attack coming on. Couldn't hurt to mention it to your Dr though.
Are the Chiropractic treatments helping with the neck pain?
Quote:I'm curious to keep reading here and learn about other treatments/suggestions. I tend to prefer natural or homeopathic treatments for health issues, but I've not found anything that produces results for my CH. Any pointers to successful alternative treatments like accupuncture, massage, etc. would be great, but I don't have high hopes.
I don't think you can get any more natural than Oxygen myself.
There are several techniques around (Charlie's and the Spaniard's) for diverting the blood flow from the head to the extremeties but I haven't had any luck with them.
I've been practicing yoga for two years now and find that the training on breath focus helps me remain calm during a hit which I belief reduces the kip level. But not always.
Yoga has also improved my lung function which I believe helps make O2 more effective.
Quote:Bottom line... I am so thrilled to have found this community of people. I, like many others, have not met another person who has CH and no one around me really understands what I go through. This has been negatively affecting my business, my relationships with my family (wife + 2 young kids) and it is an incredible relief to just know that there are others out there who do understand.
There is tremendous power in knowing you aren't alone and there are others who understand. Welcome home.
Quote:I look forward to getting to know you all!
And we look forward to getting to know you
-Dennis-