Cluster Headaches Are No Fun

[lakat]

Hey all! I was looking down through the topics in headaches forum and never saw anything about the nasty form of them which is cluster. I suffer from these horrible "headaches" and have for YEARS, with quite a few of those years being Undiagnosed. Those years were dreadful....Not saying now I know what makes me want to chop my head off has a name makes it any better, just saying it was a very scary experience suffering from the pain that a cluster can give off and being told "we just don't know" made me want to die. These nasty things feel more like a brain tumor would (in my opinion) than a headache. They particularly affect the left side of my face right behind my eyeball and will gradually get so bad that I've actually banged my head into the floor and walls of our house screaming in pain. Oh and I didn't mention that mine usually last DAYS unless I get it taken care of pronto. I started getting these "headaches" in 2009 and literally went through some of my teeth being pulled, TONS of pain meds which very rarely worked, CT scans, x-rays- you name it, doctors did it. Finally I was diagnosed with the help of simple, sweet oxygen. Yes, oxygen. An ER doc decided to try me on a bit of fresh oxygen inhaled through a mask and voila! It was gone. I was in tears and wanted to marry the man lol, for he had cured what made me want to die. Any who long story short, cluster headaches: they suck, they're painful and complicated to treat. I have to treat mine with a mixture of things meds, oxygen etc.... Just wondering if anybody else has every had the same issue.

 

[blissopifree 2]

Hey all! I was looking down through the topics in headaches forum and never saw anything about the nasty form of them which is cluster. I suffer from these horrible "headaches" and have for YEARS, with quite a few of those years being Undiagnosed. Those years were dreadful....Not saying now I know what makes me want to chop my head off has a name makes it any better, just saying it was a very scary experience suffering from the pain that a cluster can give off and being told "we just don't know" made me want to die. These nasty things feel more like a brain tumor would (in my opinion) than a headache. They particularly affect the left side of my face right behind my eyeball and will gradually get so bad that I've actually banged my head into the floor and walls of our house screaming in pain. Oh and I didn't mention that mine usually last DAYS unless I get it taken care of pronto. I started getting these "headaches" in 2009 and literally went through some of my teeth being pulled, TONS of pain meds which very rarely worked, CT scans, x-rays- you name it, doctors did it. Finally I was diagnosed with the help of simple, sweet oxygen. Yes, oxygen. An ER doc decided to try me on a bit of fresh oxygen inhaled through a mask and voila! It was gone. I was in tears and wanted to marry the man lol, for he had cured what made me want to die. Any who long story short, cluster headaches: they suck, they're painful and complicated to treat. I have to treat mine with a mixture of things meds, oxygen etc.... Just wondering if anybody else has every had the same issue.

My sister suffers from the same condition,she has found since being prescribed propanol daily it seems to stave off the worst of them.Perhaps worth a try @lakat?.

I suppose it depends on the severity of the clusters and I don't suppose this particular med works for everyone as I thought propanol was a beater blocker but like some meds they can have several uses?.

Peace 

Bliss.....

 

[lakat]

Hey Bliss. Thanks for the reply! Yes, I too have been on the beta blockers periodically and I still would get these ugly monsters. I've been on preventatives, meds that are to abort, you name it. In fact, they are still all sitting in my medicine closet because I'd give my right arm not to feel another cluster so I keep the bottles to have it in my mind that one day they could help or something. Idk....clusters are so terrible. When I get an attack I'm down for the count. I'm a busy mama of 3 kids with a husband that works in the oilfield and is gone half the month. I can't think and do not even want to move when I have one. Then other times I have to pace while crying . Tramadol has been my lifesaver. I have to take them daily in order to keep them away. It is the only thing that has ever helped and I swear by it. 

 

[Agrodge]

Hey, Iakat.  Sorry to hear that you're a cluster head.  Like you, I'm a lefty too.  The Beast has been with me for over ten years now and, at times, it has been quite the struggle.  I've been through al kinds of preventatives but none of them seem to work. I've also tried the high-flow oxygen with no affect.  Right now, the only thing that gives me a semblence of relief is a combination of sumatriptan injection (self injection) and stadol nose spray.  The shots do more than the spray....the spray just helps bring me down from wanting to bash my brains out against the wall. 

If you haven't already, I suggest you check out the sites:  OUCH and clusterheadaches.  Both sites have treasure trove of information and support.

good luck my friend!  And hang in there.