Cluster Headaches

Hopefully the answer to my question will be no response, or a huge NO, but does anyone suffer from cluster headaches? My best friend of 40 years has had them since we were in college. She is in her cluster now, and the older she gets, the harder it is to deal with the pain. She is on Imitrex, Topomax and Oxygen. The last week has been the mid-point and it has been brutal. If there is someone who has this afflication and you have any suggestions or help, you can PM me or just post your response here. Thanks so much.

Vicky

I don't know much about cluster headaches but I get migraines and as I get older they are worse. Only thing that really works for me is falling asleep and hope when I wake up it is gone. Otherwise it gets worse until I start a horrible vomit sequence and I get a brief reprieve and hope to fall asleep. If I can't get to sleep the process just keeps going in a horrible cycle. It is horrible and wouldn't wish on anyone. All the migraine medicine I have tried actually made it worse and didn't put a dent in the pain. I stumbled upon one thing that does work...pain killers. If I catch it early enough I take hydrocordone (sp?) and that usually knocks it out or knocks me out. This is probably a dangerous remedy as the pain killers are addictive but it works for me. My Dr. keeps a close eye on what he gives me, and I have had no addictive issues. I'm also lucky that I don't get them that often. Not sure if this helps but..........you never know.

Vicky,

You've probably seen this - it's a nice overview about Cluster Headaches from Wikipedia


Richard

Vocly,
How old is she? I had terrible migraines earlier in my life. Many of us find that with age and hormonal changes they go away. Perhaps this is a bright light for your friend's future.

As bad as her headaches are, she might want to see if there are any clinical trials that might help her. Have her go to http://www.clinicaltrials.gov and see if there is anything in her area (or even within a hundred miles) that might help her. She'd have to commit to a program and scheduled appointments, etc., but if the headaches are bad enough most everyone is willing to do whatever is necessary.

Good luck to her looking for a solution.

Fern

That's an idea, Fern. I know a few couple years ago, my neurologist was doing a study with botox injections for migraines. He wanted me to participate, but, at the time, my mom was undergoing treatment for cancer, so I didn't want to commit to a study. Like many, I had tried many triptons (sp?) with no positive results. He ultimately gave me some sort of injections - I don't remember what they were - but 2 were in the lower back of my head, and 2 were a little lower on my neck. He said that this would be temporary but it really eased the headaches for about 3-4 months.

I understand the OP's distress for her friend. I would get headaches (many escalating to migraines) on an almost daily basis. I have a high tolerance for pain but sometimes the nausea and severe light and sound sensitivity (the only positive was that although nauseous, I wouldn't vomit), would drive me to a dark, quiet room and the only respite would be to close my eyes and sleep.

After a scare with my liver from taking too much naproxen (sp?), I found Topomax, and that has made the headaches much better. Now I get the migraines/headaches with much less frequency and severity. When I do get the occasional one now, I take Tylenol w/codeine. (My doctor watches my intake of it carefully.) Coupled with the daily Topomax, if I take it early on, that usually works.

My husband and his younger sister both have suffered from cluster headaches. The doctors could never help them. My husband (age 50) had them at least yearly from the time he was a very young man until about 5 years ago - has not had one since. His sister is a few years younger and hers have gotten better, but she still suffers terribly with them once in awhile.

Thanks to you all for your replies. The cluster headaches are different from the migraines I guess because of their pattern and pain intensity. I will go to that government website and see what it has to offer, but we have researched high and low, with no real luck. Only 1% of the entire population suffer from cluster headaches and so it isn't on the top of the list for research. Laura is 56 and the older she gets the harder it is to deal with the intense and frequent pain. She has had to go to the hospital 5 times in this cluster (which always last an entire month) for pain injections. The pills don't work fast enough and usually make her vomit. Anyway we are always on the lookout for any new break-throughs and really appreciate your input. Thanks.

Vicky

Vicky,

Here's more info on cluster headaches and treatment from the Michigan Headache & Neurological Institute


Richard

Richard,

Thank you for that website. We have looked at it in the past, but not in the present cluster, and it has been updated. Very informative. Thanks again for your input.

Vicky

Vicky, I have had cluster headaches for about 20 years. It feels like someone is pushing a hot poker through my right eye. It is always on the right, and always at night. I take Phrenilin, which is the same as Fiorcet but without the caffeine. I have developed a tolerance to it, though, and while I used to take 1 tab, now I need 3 to effectively treat the headache.
Last year, I was diagnosed with Trigeminal Neuralgia, a painful nerve condition of the face. I am being treated with Neurontin. Since being on the Neurontin, I have only had a couple of mild headaches - nothing like my classic cluster headaches. I know Neurontin is not an approved treatment for the headaches, but perhaps it is something your friend can ask her doctor about. - Jacki