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Topic: hemicrania anyone? (Read 806 times) |
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Radha
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hemicrania anyone?
« on: Sep 26th, 2006, 11:32pm » |
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i really think i have hemicrania continua but with some aspects of cluster, do any of you this disorder? and if you do you get any sharp ear pain and sharp aches in the area of the neck right below the ear all on the same side as the eye? i am taking indocin, do you have to take this regulary or only when you have the pain, i have been researching alot, but want to hear about personal experiences, the triptans do help sometimes, so confused as to which kind of headache i have, indocin helps sometimes and then sometimes not, any help would be appreciated thanks
radha
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chopmyheadoff
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Re: hemicrania anyone?
« Reply #1 on: Sep 27th, 2006, 5:33am » |
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hi there - sorry to hear your in pain - sounds like a bit of a mess to me . . .
you do realise that you can have more than one headache going on at the same time ??
i get the ache in my neck before a cluster starts and i feel like i have to stretch my neck to one side.
i think that the indocin is supposed to give complete relief if it is hc that you have but there are others who will be along soon who will be able to give you a more definate answer.
do you see a neurologist ? if so then what was his official diagnosis ??
also, when you say triptans help sometimes , which triptans are you using, and which delivery method ? ie injection etc ??
chop
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BB
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Re: hemicrania anyone?
« Reply #2 on: Sep 27th, 2006, 10:07am » |
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Hi
I thought you have Hemicrania from the symptoms you described to me previously. My DH has CH but he also had symptoms of hemicrania continua. He took indomethacin for about 3 weeks and the pain went .
You have to take indomethacin regularly, even when you are not in pain. Also make sure you eat before you take it as it can cause acid and stomach ulcers long term. The usual dose is 75 mg twice a day but can work from 50 mg twice a day.
Good luck with it all. You should still see a neuro to get properly diagnosed though.
Painfree wishes to you
Annette
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E-Double
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Re: hemicrania anyone?
« Reply #3 on: Sep 27th, 2006, 9:47pm » |
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You take the indocin as a preventative.
I've used it for another headache type I have of which it is also responsive.
IF your attacks go away then you are set 
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Charlotte
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Re: hemicrania anyone?
« Reply #4 on: Sep 27th, 2006, 10:20pm » |
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Radha, I believe we came on baord about the same time. To add to the confusion, we can have more than one type ha at a time.
I now use 75 mg time release twice a day (never miss), in addition to neurontin & kudzu. Also occasionally use 1/4 maxalt mlt & red bull.
The neurologist did not give me a clear diagnosis but a confusing one, and my doc added the indocin because he read about hemicrania continua.
It provided immediate relief, but does not prevent. Nothing prevents, but the med plan I'm on right now has helped more than others in the past.
The thing that makes my ha not hemicrania continua is that I have a pf period in between each ha. Otherwise, it would fit the box.
This is my worst headache period ever. Normally, after a few months at every 3 hours, I go back to 1 or 2 a day, but this time, I went to every 2 hours and have been about 2 hours or so for 9 months, except for the odd end minicycle back to back hits. Right now it is every 2 hours 11 minutes apart.
I see the neuro again 10-5. Wish me luck.
Charlotte
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| « Last Edit: Sep 27th, 2006, 10:25pm by Charlotte » |
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Radha
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Re: hemicrania anyone?
« Reply #5 on: Sep 27th, 2006, 11:30pm » |
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thanks so much for all your replies, i am only take 25mg twice a day so i guess i am not taking enough, and relpax and maxalt helps so i guess taking indomethacin for the actual pain would be useless? you have to take regulary right? i cant thank you all enough for your replies, do any of u get the sharp in the ear and carotid artery in neck all on same side as the eye and head?
radha
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BB
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Re: hemicrania anyone?
« Reply #6 on: Sep 28th, 2006, 4:51am » |
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Hi Radha
Yes, my DH said that he had had sharp pain in his left ear straight down the neck along the carotid, usually felt when the burning and the facial pain with the hemicrania got worse. But he has not had it since on the regular doses of Indomethacin.
You should increase indomethacin to 50 mg twice a day for a bout a week, then if its still not quite enough then up to 75 mg twice a day, that should help the hemicrania pain a lot more.
Take care and painfree wishes to you.
Annette
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E-Double
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Re: hemicrania anyone?
« Reply #7 on: Sep 28th, 2006, 7:06am » |
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To my knowledge, if you have HC or PH or ISH/PSH(was idiopathic stabbing now primary stabbing AKA icepicks...I have these too) or a few others then if you get the proper dosage, you will not need an abortive whatsoever!!!
They will be gone!
Good luck!
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Charlotte
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Re: hemicrania anyone?
« Reply #8 on: Sep 28th, 2006, 9:25am » |
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Ask your doc if you can try 150 mg a day for a week as a trial to eliminate or confirm this general type of headache. You should actually know by day 2.
I think the low dosage is why it did not work for me at all in 2002. This time, 50 mg worked, but the only thing available in my area a month ago was the 75 mg time release, and it definitely lowered the pain. I am using very little maxalt melt or red bull these days, but I use kudzu & neurontin, in addition to the indocin.
No, it didn't prevent, but it has improved my quality of life. The beast is still here, but she's giving me some space.
Charlotte
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| « Last Edit: Sep 28th, 2006, 9:28am by Charlotte » |
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no-one
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Re: hemicrania anyone?
« Reply #9 on: Sep 28th, 2006, 7:31pm » |
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I was told by my neuro I could go up as high as 200mg
According to RX List:
Capsules INDOCIN 25 mg b.i.d. or t.i.d. If this is well tolerated, increase the daily dosage by 25 or by 50 mg, if required by continuing symptoms, at weekly intervals until a satisfactory response is obtained or until a total daily dose of 150-200 mg is reached. DOSES ABOVE THIS AMOUNT GENERALLY DO NOT INCREASE THE EFFECTIVENESS OF THE DRUG.
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Radha
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Re: hemicrania anyone?
« Reply #10 on: Oct 3rd, 2006, 12:16am » |
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i have been trying again again and getting very frustrated for days now to reply, but i keep getting timed out! whatever that means! oh boy was i mad!! then today all of a sudden it works! does anyone else have this problem with not being able to reply?? anyway, i was wondering if any of have any idea what causes hemicrania since i have tried to find out and done alot of reading but cant find any causes, and do any of you know if you have to take the indocin forever? i am getting some relief from this med, but i dont want to have to take it forever daily!! guess if i have to i will, but was just wondering, any input would be appreciated, thanks to all of you for the info you gave me, you have all been a huge help, is there any group or message board for people with hemicrania? thanks again,
radha
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BrianM
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Re: hemicrania anyone?
« Reply #11 on: Oct 3rd, 2006, 12:57am » |
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Yes, I have similar pains - also tried idocin, but it didn't really help me at all. Triptans did nothing for it. One thing I heard from a professor - and this sounds really silly, but actually works for me - put your head in the freezer. I feel the pain starting, and know it's going to be bad, and I close my head in the freezer for 2-3 minutes, and it actually releaves some of the pain for a short period of time. Hope you find some relief.
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BB
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Re: hemicrania anyone?
« Reply #12 on: Oct 3rd, 2006, 9:05am » |
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Radha,
I am sorry but all the researches up to date still dont know yet what causes hemicrania. And yes you are likely to need to keep taking Indocid for the time being.
Hopefully someone will eventually come up with an answer.
Best wishes.
Annette
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BB
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Re: hemicrania anyone?
« Reply #13 on: Oct 3rd, 2006, 9:07am » |
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on Oct 3rd, 2006, 12:57am, BrianM wrote:| Yes, I have similar pains - also tried idocin, but it didn't really help me at all. Triptans did nothing for it. One thing I heard from a professor - and this sounds really silly, but actually works for me - put your head in the freezer. I feel the pain starting, and know it's going to be bad, and I close my head in the freezer for 2-3 minutes, and it actually releaves some of the pain for a short period of time. Hope you find some relief. |
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I am really curious on this one Brian, how do you keep your head closed in a freezer?
Did the Prof explain to you how does it work or is it just the coldness numbing all sensation?
And how long does the relief last for ? hrs or mins?
Thanks for the info.
Best wishes.
Annette
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donoholdt
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Re: hemicrania anyone?
« Reply #14 on: Oct 12th, 2006, 10:03pm » |
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All along I thought I had CH but today a new neuro suggested paroxysmal hemicrania. She prescribed indomethacin, saying it is the only way to differentiate between hemicrania and CH. If indomethacin works, I have hemicrania. If it doesn't, we'll go back to seeking CH solutions. Unfortunately I live in a small town and can't get the drug immediately. Meantime, I'm taking Tylox, although some literature from the neuro said aspirin may provide some relief. Haven't tried that!
The neuro was baffled that past docs had prescribed Sansert. According to her it's very unsafe. She hasn't prescribed it in 20 years. It is what has worked for me, so I hate to give it up, but the heart danger scares me, and I'm almost out and can't get more. Next doc prescribed ergotamine which was useless!
The pursuit continues. Unfortunately, so do the headaches. I'm sure I'm not the first to say, "Why me?"
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E-Double
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Re: hemicrania anyone?
« Reply #15 on: Oct 12th, 2006, 10:29pm » |
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hemicrania just means severe recurring headache.
You mean Paroxysmal Hemicrania.
The indocin will diferentiate.
There are a few other Hemicrainias that are responsive to indocin as well.
Good luck and I hope it works!!!!!!!!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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