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Topic: It was 2:27 am this morning... (Read 868 times) |
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Hunny
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...when the beast woke me but it's different this time.
When I found this site in the wee hours of January 1st this year I had just experienced my first real kip 10. I only THOUGHT I had been there before. instead of lasting 4 or 5 days my cycle had gone on for more than two weeks. Instead of 4 to 7 bouts a day there were too many to count. When you're having cycles every 2 or 3 weeks all year long this is a LONG cycle to go through.
I'm 53 and my headaches have been going on for over 20 years. When I was 37 I was finally diagnosed with TMJ and at 40 gave in and had major (7 hour) surgery. They sawed the bones in my face from ear to ear (going under my nose) and then down from my eye. My lower jaw was cut and moved outward. My mouth was wired shut for 8 weeks, all the nerves in my face were cut so for a long time I didn't feel any pain at all, I still have a numb spot on my lower lip.
This really helped the headaches, a year or so later when they started again I was told it was sinus because my nose didn't heal right and the septum was off center. More surgery to fix that. Again, seemed to work.
Then the ch started. I didn't know what to make of it becuase it was a very different headache. Dr. said sinus, then menopausal migraine. Gave me Imitrex and I ended up on the telemetry floor of the hospital for 5 days, it almsot killed me.
I've been afraid to take anything since then. Just make it through and go on with my life. I'm very scared now though.
The last cycle at Christmas was really bad and so different from what I've come to expect. Today I feel like the beast is playing with me. I have the pressure in my eye (I swear there is someone in there trying to push my eye out), my cheek is hurting me, nose running, eye watering, neck and shoulder is tensing up. The pain was bad enough to wake me but it's not getting worse and it's like waiting for the axe to drop. It's been more than 6 hours and I'm still at a kip4 or 5. Does anyone else do this? I want it to come so it will be over for awhile.
My husband and I are going away for a week on Saturday and now I get to take the beast with us. 21 days without him wasn't enough.
I'm drifting around, sorry. It's hurting bad enough to make it hard to think clearly. But what I want to know is - if I can't take Imitrex what should I take. I'm ready to try again.
I've read all of you talking about oxygen but all of the meds you mention are so different Where do you start? I started with Imitrex and that was obviously a bad choice. Now what? Sorry this is so long, don't really feel like going back and editing it though.
Thanks for being there, thanks for your help. My Dr. will give me what I ask for but he really doesn't know anything about headaches so anything he came up with would be a guess.
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Bob P
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Shut up Bob!
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Re: It was 2:27 am this morning...
« Reply #1 on: Jan 22nd, 2003, 9:41am » |
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Quote:| Instead of 4 to 7 bouts a day there were too many to count. |
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With that many attacks and being female, I'd try indocin (indomethacin) because it sounds a lot more like CPH than CH.
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"SHUT UP HUB!"
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Margi
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Re: It was 2:27 am this morning...
« Reply #2 on: Jan 22nd, 2003, 11:02am » |
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I have to agree with Bob here, Hunny. I mentioned to you in a previous post that this doesn't sound like CH to me either. You said yourself that your doctor doesn't know much about headaches. Ask him or her for a referral to a neurologist who does.
Maybe I read you wrong in another post of yours, but you said your attacks are lasting up to 4 days? Clusters don't do that. However, if you meant that you're having pain free times between the attacks and are having more attacks than you can count in a day, Bob's right - it could be CPH and indocin is very effective for treatment.
Still, the way you're describing your 'cycles', it sounds like it could very well be hormonal. If you do get diagnosed by a neuro to have migraine, please know that oxygen does help to abort those as well.
I really think your first line of defense should be to get in to see a good neuro as soon as possible. At least then, you will know what you're dealing with and be able to plan an effective treatment plan. Cluster drugs taken for non-cluster headaches can be very dangerous. Definately get a second opinion.
Hope this helps you.
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The mad viking
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Re: It was 2:27 am this morning...
« Reply #3 on: Jan 22nd, 2003, 11:16am » |
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I`ll have to copy Bob P on this one
Svenn
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echo
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Re: It was 2:27 am this morning...
« Reply #5 on: Jan 22nd, 2003, 11:30am » |
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Sorry to read you are having a rough dance with the beast.
Hopefully you will find the drug combo platter that will keep the SOB at bay.
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Hunny
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Re: It was 2:27 am this morning...
« Reply #6 on: Jan 22nd, 2003, 12:39pm » |
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Thank you everybody!!
I'm doing better for a while now, maybe I can make more sense. Usually I have 4 day bouts with the beast. I get 3 to 7 "attacks" a day - I'm pain free in between. Usually wakes me up at night around 2:30 or 3 and goes on and off for 4 days or so. Sometime 3 days, sometime 6 or 7.
Then, I go from 2 weeks to 5 weeks pain free until it starts again. This goes on all year long, not better or worse any particulare time of year.
Over Christmas the bout lasted for over 2 weeks. The headaches came and went as usuall but by the end of the 2 weeks they became much worse and for the last 2 or 3 days there were more than usual. Can't tell you how many because I just didn't keep count, I felt like I was either hurting or recovering all the time. New Year's eve was the last one and the worst one. I've never hurt like that before. That's when I found this site.
Looked at the comparison table on OUCH and can see that last time really does seem to be more CPH but previously CH fit much better. Can you cross over??
It's time to go to the neuro. You're right about that - I appreciate all of you trying to dig through my rambeling and coming up with help for me. You're the best 
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ami
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ami manning
 
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Re: It was 2:27 am this morning...
« Reply #7 on: Jan 22nd, 2003, 12:53pm » |
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I'm right there with ya. it's been two years. I've seen neurologists --and they keep diagnosing me with tension-migraines and giving me narcotics. The migraine meds don't work-- narcotics -- i'm becoming addicted to serverely. was hospitalized to get off paxil -- believe it or not -- totally addicted to that by a NEUROLOGIST! I've not made another appt with a neurologist and hope to get in feb. 17th. until then i take xanex b/c it's the only thing that calms me down. i'm a mess -- and have been in this cycle now for almost a month this time. --
i feel your pain.
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ami manning
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