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Title: Long time lurker finally coming out to commiserate Post by bella_lunatic on Feb 24th, 2006, 6:08pm I have been lurking for years. I had my first cluster March 1994 at 20, and have for at least the last 6 years been on a schedule of 3 cycles a year, about 2 to 3 months long with the exception of the cycle that starts sometime in early summer. It is usually about 4 weeks long, but produces some of the most intense hits. The cycles almost blend into one another except I do have at least a few PF weeks between them. The longest I typically go PF is between July and October. When I start the cycle of cycles all over. I was officially diagnosed in 2001, after 7 years, and being told it was sinus problems (including 2 surgeries), TMJ, allergies, eye strain, migraines, depression related pain, and my personal favorite (and I quote) a garden variety tension headache. Asked that neuro if he ever had a tension headache, and when he told me he had, I asked if he had visions of jumping off the top of the building his office was in, and making sure it was head first during one of "his tension headaches". Usually oral triptans (currently Relpax) have worked, so long as they are taken early enough. If I don't catch it in time, mostly the nighttime beasts, I will just try to ride it out. Water has helped, about 1/3 of the time. O2 has helped, but I have found that my next hit is usually more intense, and won't respond to O2. I am on Zoloft, although this was given strictly for depression, and it doesn't seem to help other than I think the hits are maybe less severe, but this could just be completely coincidental. I was prescibed Verapamil (by the same neuro who initially diagnosed tension HA). By the second dose I ended up in the ER, because I couldn't stop passing out. Common side effect, I am told, when someone has BP somewhere in the 80/50 range and being given high BP medications. :P Needless to say I never went back to that neuro, and filed a complaint with the state board over that one. For the past three years have been going through all of this without health insurance (my husband and I are building a business, and so far there isn't enough money to buy health insurance). I am only on the Zoloft and Relpax, because I have qualified for help through Pfizer, and my GP. But just found out that I can now only get 12 Relpax per month. Well that is about a weeks worth in my world. I don't know what else to do. Anyone have any ideas. I have never had any problems dealing with this until now, and the thought of having to go through this with no meds at all is terrifying. I have been lurking for so long now, and have drawn so much inspiration, and some great tips from all of you, and I wanted to thank all of you. You are helping. Even if you don't know the person you are helping is there. Sorry for the novel :-[ but thanks if you got through all of it. It feels good to be able to get this off my chest. Bella |
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Title: Re: Long time lurker finally coming out to commise Post by Guiseppi on Feb 24th, 2006, 9:03pm I love getting thru long posts like yours, they echo so much of what I went through. I'm episodic like you, I get 2 cycles a year usually. I've had great luck with lithium. I take 1200mg a day when I'm on cycle. I'm a 46 year old male and weigh about 200 lbs for comparison purposes. For the headaches that break thru, I use oxygen and cafergot. I take the cafergot as soon as I start the oxygen. It seems to keep the headache from coming back for 8-12 hours. The lithium, cafergot and oxygen are all relatively cheap medications. For a person without health insurance it might be an avenue to try if you haven't yet. Praying you find something that works. Having nothing to fight the beast with scares me. Good luck. Guiseppi |
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Title: Re: Long time lurker finally coming out to commise Post by MJ on Feb 24th, 2006, 9:06pm Welcome Bella. Dig in, look around, make yourself comfy, its cold lurking outside. Your questions will be answered in due time. The best in the Cluster world are here to help. |
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Title: Re: Long time lurker finally coming out to commise Post by Dragnlance on Feb 24th, 2006, 9:56pm Hi Bella, I am very glad to see you come out of the cold. No need to hang outside, when you are Home. Welcome home Bella. We are sorry you are in pain, but there is some good info here, and a large number of resources. But most of all, you are part of a family, which sometimes can help a lot more than one realizes Dragnlance |
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Title: Re: Long time lurker finally coming out to commise Post by RichardN on Feb 25th, 2006, 2:22am Hi Bella and add my "Welcome Home" Often people report they might get a rebound headache shortly after killing the beast with 02 . . . . a general suggestion has been to reduce the lpm on your regulator and continue breathing for . . .? . . . minutes. We're all different. What flow rate do you use? Non-rebreather mask? I ask because so many, when they do get a script, end up with an 8 lpm regulator and nasal canulae (nose-thingy). . . . which isn't near as effective as a 15 lpm regulator with the non-rebreather mask. There will be plenty of folks along who have experience with all the meds you mentioned. I have only used Verapamil and Melatonin, plus water/water/water. Be Safe, PFDANs Richard |
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Title: Re: Long time lurker finally coming out to commise Post by burnt-toast on Feb 25th, 2006, 12:24pm Welcome aboard Bella. You've been at this for some time so I'll skip the usual "need to do" advice and stick to a brief welcome. Stick around to help and be helped when needed. Best Wishes Tom |
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Title: Re: Long time lurker finally coming out to commise Post by bella_lunatic on Feb 25th, 2006, 1:40pm Thanks for the warm welcome! I don't know why it was so hard to make that first post. Possibly my other dreaded affliction of being painfully shy. :) But it was nice to get such warm responses. And to answer Richard's question. My GP is kind of green on the whole cluster thing (I'm his only cluster patient) so it has been trial by fire with us. I printed up the info from Dr. Kudrow on O2 and took it to him, and he wrote out the script according to his instruction. So yeah I have a 15 lpm reg, and the non rebreather mask. But I think I will give a try with reducing the flow. I have always maxed out the flow, perhaps it is too much. It is definitely worth a try. Trying to be upbeat right now, but I am just coming back in cycle, and the meds issue couldn't have come at a worse time. At least I could have stockpiled during the PF times if I had known! I hate this. Thanks again you are all life savers! Bella |
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Title: Re: Long time lurker finally coming out to commise Post by chewy on Feb 25th, 2006, 2:06pm Now that you've outed yourself. Hows the weather in Reno? |
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Title: Re: Long time lurker finally coming out to commise Post by vietvet2tours on Feb 25th, 2006, 2:23pm Nice to meet you. Potter |
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Title: Re: Long time lurker finally coming out to commise Post by bella_lunatic on Feb 25th, 2006, 2:29pm on 02/25/06 at 14:06:16, chewy wrote:
It is absolutely beautiful. Looks like an early spring. Sunny and about 60 today. Really want to get up boarding, but I blew out my knee 6 weeks ago, and I don't want to waste the money for a lift ticket when the beast is famous for rearing his ugly head at the worst times. :P Nice to meet you. Bella |
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Title: Re: Long time lurker finally coming out to commise Post by PL259 on Feb 25th, 2006, 5:38pm Hello Bella, Glad you finally came out. Sounds like you have quite a history. Finding the right mix for each person is sometimes difficult to say the least. I started off on 02 at 7 lpm. That worked for a long time, I finally eased up to 10. My last cycle was the only time I ever had anything strange come up with the 02, not rebounds, just headache after headache, a few minutes apart, although the 02 continued to work. But I ain't never been "right" so I am not a good example :D Welcome, make yourself at home. |
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