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Topic: Another confused Newbie!! (Read 351 times) |
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Kali...
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Another confused Newbie!!
« on: Jul 23rd, 2007, 10:52am » |
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[color=Purple][/color][font=Verdana][/font]Hello there all, another newbie here!! Not sure where to post or if I have even figured this out yet...
 I am 32 years old, married w/ 3 wonderful teenagers. My headaches began 6 years ago and I just recently got diagnosed w/ ch. I am taking medrol, frova and limictal. Of course, this crap isn't working.
My boss is the one that referred me to this site, since her husband has been suffering from ch for years.
I feel she really does understand my pain, although, I wonder how much time I really can be off of work before I get the boot. That stresses me out as much as the headaches.
I have taken so many medications I have forgotten half of their names. I have had depo infusions and been placed on antidepressants. I hate taking pills and shots suck. Many trips to the er, make them treat you like a freaking junkie and dr's that seem to really not have a clue and use you as a test pilot for their new ideas.
My dr has now told me to stop taking my hormone pills and wants to send me for a sleep study. Ok fine, now am looking at making myself and my family even more miserable. Which scares me thinking these headaches could possibly cause me to loose my job and my husband from being a menopausal, head pounding psycho bitch from hell. I don't want that. I just want to be normal and not stay awake for 2 days at a time to fight away the waking up w/ a pounding headache. But as I have learned no sleep brings them on as well.
Please shed some light my way!!!!
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Guiseppi
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Re: Another confused Newbie!!
« Reply #1 on: Jul 23rd, 2007, 11:40am » |
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Ouch, having a tough run it sounds like. Try and get oxygen prescribed, no side effects and for me it'll abort a headache in less then 10 minutes. Works really well for the night time terrors, I keep the tank leaning against my bed when in cycle!
Have you tried lithium as a prevent yet? I use 1200 mg a day when on cycle and it blocks up to 80% of my headaches if i stay away from my trigers, (alcohol, stress and sleep disruptions). For dosage comparison I'm male, 47, weigh 190 pounds.
Welcome to the board, you have much reading to do. You will find most doctors are woefully undertrained on these things. It will be up to you to manage your care. Start reading and do push for the oxygen!!!
Guiseppi
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Kris_in_SJ
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Re: Another confused Newbie!!
« Reply #2 on: Jul 23rd, 2007, 8:04pm » |
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Hi Kali,
Sorry you're suffering so much right now. Successful treatment of clusters usually means a multiple approach. That means an effective abortive like Oxygen or Imitrex injections, a preventative like Verapamil or Lithium, and sometimes a transition drug like Prednisone.
Here's a link that saved my life a few years ago, and one that you should share with your doctor.
http://www.plainboard.com/ch/chtherapy.pdf
You might also start taking Melatonin (available OTC in any drugstore). You can take from 6-12 every night about 30 minutes before bed. It's all natural and can really help with the night hits. Takes a few days to work up your blood levels, but really helps me.
When looking at abortives, look hard at Oxygen - the primary defense for many aroung here. It must be taken correctly to work, though. See the link to the left of the board.
Hang in there and don't give up!
Hugs,
Kris
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GrandPotentate
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Re: Another confused Newbie!!
« Reply #3 on: Jul 23rd, 2007, 10:51pm » |
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Glad you found us, sorry you had to look.
See if you can find or get referred to a good neuro with experience with CH. Many of us have run the gamut of various drugs that work for other stuff, but don't do diddley-squat for CH. I had a doc who got me goofy as hell as he went through his list of migraine remedies. It would be funny if it wasn't so dangerous.
Speaking of diddly-squat, add extensive sinus exams, MRI, getting new glasses, getting wisdom teeth pulled, etc... Yes, DO have your doc check for other causes, but impress the degree of urgency and pain involved.
Read up on and discuss oxygen with your doctor. You need to hit it hard as soon as the first twinges come on (shorten that denial; yes it probably really is a hit...). It doesn't work for everyone, but works tremendously well for many of us.
We're not doctors, but you will be hard pressed to find a more supportive group anywhere. I've got my kid's bartender to thank for referring me here. Keepin touch,and let us know how things work out.
Jon
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Jon
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Kali...
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Re: Another confused Newbie!!
« Reply #4 on: Jul 28th, 2007, 11:17am » |
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 Thanks for the replies and suggestions. I finally got relief for the moment.
To give you a little in sight on what I have been going through. I can remember getting my first migraine when I was around 12. They seemed to get worse as I got older. Then about 6 years ago I started having them bad for long periods of time. With no relief. Then came the mild black outs and mini seizures. I had a car accident from blacking out and the ct showed I had a pineal cyst on my brain. Long story short, the state this has nothing to do w/ my headaches. They ran a eeg, mri, and many more tests. All in conclusive. So they determined I was having migraines which caused stress seizures. None of the medicines i tried stopped them. I would spend alot of time in the er getting shots of imetrex, phenegan, reglan, benodryl, demerol, etc. You name it they tried it. Then they prescribed lortab for the head aches. It worked for a few weeks and then seemed to make my head hurt worse. Same w/ shots of demerol it ended up causing my head to feel like it was on fire. I finally gave up when I lost my job and insurance. I figured no one understood and I would just deal with it.
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Kali...
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Re: Another confused Newbie!!
« Reply #5 on: Jul 28th, 2007, 11:36am » |
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Sorry this is so long, just figured it would be best to explain.
Then they started getting really bad even worse than before. So I went to the er. They prescribed varapimil (?) w/ benodryl and reglan. Since it worked in the iv. All this does is knock me out and make my head hurt worse when I wake up. Heck, I can't even take a nap during the day without waking up with a bombshell of a headache.
Back to present day. The other day, after not getting any releif or insight from my neuro. I went to my pcp. He said he could tell from looking at me i was in pain and didn't understand why my neuro was not listening. So he gave me a shot of neubane? and sent me home. This finally helped me go to sleep. When I woke up the following day, my headache was gone. I still had a mild shadow headache, but the monster had been tammed. That morning when I got to work my neuro's nurse called and was checking on me, told me the dr had said the exact same thing he did before. It kills me he doesn't remember anything he tells and just tells me to do the same thing over again, as if it was the first time he ever told me to do it.
I then requested to be released as his patient, so that i could see a neuro opthomolgist that specializes in headaches could see me in the same hospital.
The next day the nurse calls me and said he called me in compazine and that he wanted to schedule an appt. w/ The neuro opthomologist for a 2nd opinion and the neurosurgeon I seen several years ago about the pineal cyst. Evidentally, he still doesn't read notes because the neuro surgeon told me to follow up ever year or 2 with a mri and if there was no significant growth then no reason to return. The freakin cyst has budged and through all the research I have done no one will associate the headaches w/ the cyst. I am starting to believe they love taking my money and leaving me in pain. It's frustrating and when I ask about other medications that people tell me work for them they treat me like i am stupid. I have had enough!!! I can't get in to see the neuro that specializes in headaches for another month and a half, so what in the hell am I suppose to do until then. They say stress brings on these headaches, well the dr's will not relieve them so that is stressful, you miss work that's stressful, the pain is ungodly, and all the dr's and medicine prices are outrageous, so what do you do???
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thebbz
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Re: Another confused Newbie!!
« Reply #6 on: Jul 28th, 2007, 2:19pm » |
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Caffeine and 02. Looks like you need to get rid of all the people you have dealt with and start anew.
Most doctors dont have a clue about CH.
Doesn't look like they are treating you for CH
http://www.plainboard.com/ch/chtherapy.pdf
all the best
jb
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Bob_Johnson
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Re: Another confused Newbie!!
« Reply #7 on: Jul 28th, 2007, 3:48pm » |
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The meds you are using are not the standard stuff for CH and, while I'm not up to date on migraine, they do "taste" like meds used for M.
The link you have been given is first rate, written by one of the better headache doc in the U.S. I'd encourage you to print it out and use as a tool to guide a discusssion with the doc.
Given your medical history it's possible that you have "cluster-like" headaches, i.e., a headache with symptoms like those of CH but acutally arising from one of the related conditions you have outlined.
Given the complexity of the situation anything we could offer needs to be worked thru with your doc anyway. But, having said that, I wonder why, given a Dx of CH, you have not been given a trials of several different triptans.
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Bob Johnson
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