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Topic: Now what? (Read 391 times) |
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Dizzie
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First of all - thanks to everyone who posted messages in response to my questions - you guys are the best.
My husband is seeing a new neuro who thought because of the outrageous amount of Imitrex he has taken, he should have a Thalium Stress test of his heart, and it came back positive (which is bad) and so we have to see a cardiologist. In the meantime, the neruo said don't take any more Imitrex. So, now what?
He have him a prescription for Indomethacin to use as an abortive. When I searched the website for posts about Indo, they date back to 2001. Does anyone use it now? As an abortive or a preventative?
He currently takes 480 Mg of Verapamil and 480 Mg of Lithium a day, and for now it is holding the headaches at bay. He is chronic. We are dreading the next siege. They always come.
 ???
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firebrix
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Re: Now what?
« Reply #1 on: Dec 28th, 2002, 2:46am » |
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Greetings Dizzie
Indomethacin is used to treat chronic paroxysmal hemicrania or CPH a type of cluster headache which is identified as it usually responds to Indomethacin.
Maybe your neuro suspects that your husband has CPH and his way of ascertaining this would be to try Indomethacin. If it works, he probably has CPH. If it doesn't work, he probably doesn't. If this sounds hit and miss its because it is! I know this cos its what neuros tried with Mopar. Because he was chronic, and didn't respond to other drugs used for CH, it was assumed that he had CPH.
However Indomethacin did nothing for Mopar except upset his stomach. Badly.
I hope it has more effect on your husband and that these effects are all good.
Many CHers find relief from breathing pure oxygen at 8 -15 litres per minute through a non-rebreather mask. This might help in your circumstances.
To answer your question about what Indomethacin is, I think it is a non-steroid anti inflammatory drug. Someone please correct me if I'm wrong!
I hope things improve for you.
Wishing you PFDAN
firebrix
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The mad viking
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Re: Now what?
« Reply #2 on: Dec 28th, 2002, 3:09am » |
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almost every neuro`s start "the long way" to find the proper clustertreatment with Indomethacin.If you respond to that its almost sure that we are talking about CPH and not Cluster.Oxygene is well documented that it helps a lot of clusterheads but unfortunatly all.If you test oxygene be sure that you get MINIMUM 10l/minute for ca 15 minutes.Try and get the Imitrex-shots.Those are miracles for most of us.
I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway
Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily
Take care
Svenn
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JoeyT
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Hi,
I am new to this board too. I had a heart attack almost 5 years ago and my doc now will not let me take any abortive meds. My CHs stopped for 4.5 years but came back recently. I am here asking basically the same questions as you.
I don't beleive that Indomethicin is generally used as an abortive med - I could be wrong. Has you husband tried Oxygen? It's all I have left as an abortive and it does work most of the time. You can find many details on this board or ask me via email or this board. If you would like to contact me by phone just send me an email. O2 isn't very convenient but, as I said, it works.
If you do find any other answers PLEASE let me know.
Good luck to you both,
Joey
joey.t@attbi.com
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Dizzie
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My husband did try oxygen, and it didn't work at all. But, the kind of mask he used didn't have the bag thing on it, (is it called a rebreather?) it was just the plastic mask, so maybe that is why it didn't work. ???
So far the 480mg of Verapamil and the 480mg of Lithium are holding the CH's back. Does anyone get winded easily from Verapamil? It seems that with any exhertion at all, my husband is short of breath.
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eyes_afire
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Re: Now what?
« Reply #5 on: Dec 30th, 2002, 7:50pm » |
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Hi Dizzie. Although I think verapamil sometimes made me fatigued, I never experienced shortness of breath. The shortness of breath is more likely symptomatic of his cardiac problems.
Concerning O2.... what you need is a non-rebreather mask. It should have a reservoir bag and plastic disks covering the holes. Since your husband did not have the reservoir bag, my guess is that he was not breathing pure O2, and that may be why it didn't help.
I've tried Indomethacin. I don't think it really did anything for me. It's rough on the stomach.
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JoeyT
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I know from experience that verapamil will regulate your heartbeat. Last couple of times I had a stress test they couldn't get my heart rate up to what they wanted. This could cause the fatigue and/or shortness of breath. I am told that it isn't too much of a problem depending upon the other conditions you have. I was taking 480mg of verapamil before I had my heart attack. They tried to reduce it to 240mg last summer and after a week the HAs started resurfacing after over 4 years.
I'm new here and I can't believe what a great bunch of people I've met in the last few days.
Good luck to you both
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hdbngr
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Re: Now what?
« Reply #7 on: Jan 13th, 2003, 4:26pm » |
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The indocin is very rough on the stomach. I think it would be difficult for some Docs to tell if a patient had CPH or Clusters because after two doses of Indocin, your stomach is usually too torn up to handle any more.
Keep trying the oxygen, and save the indocin for the really bad ones. They can be taken with Prilosec to help minimize the stomach discomfort. They also come in suppository form (must be specially mixed by pharmacy) so while it is still metabolized in the stomach, at least it dosn't dissolve there. That may help. Good luck.
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Karla
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Re: Now what?
« Reply #8 on: Jan 13th, 2003, 5:17pm » |
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verapamil made me very short of breath and it was imposible for me to do anything. Plus it did nothing to help my ch. I have heard of people taking indocin 3x daily at 50 to 75mg to prevent ha but not once as needed to abort the ha. Hmmm. I hope the dr knows what he is talking about. Good luck!
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Karla
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Marc
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Re: Now what?
« Reply #9 on: Jan 14th, 2003, 3:14am » |
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About 2 years ago, I took Indo (50mg x 3 or 4) daily as a preventative. At the time I was convinced that it was helping. Never had any problems with my stomach because I ALWAYS took it with lots of food.
Then I only used it to help abort CH's. Now I don't believe that it helped much. My CH's reduced because of the Verapamil that I started taking at the same time.
Good luck.
Marc
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Roxy
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Re: Now what?
« Reply #10 on: Jan 14th, 2003, 3:01pm » |
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Dizzie,
I was just diagnosed two months ago by my family physician. She put me on indomethacin 75mg once a day, and Nexium, 40mg once a day. The nexium is so it doesn't tear up the stomach. Still trying to get in to the neuro.
I hadn't notice any difference with the indomethacin, still the same amount of headaches (I'm chronic ). So three days ago, I decided to hell with it, and stopped taking the indomethacin, I figured it wasn't doing anthing anyway. Night before last, I got hit 5 times between midnight and 9am. Six more hits between 3pm and midnight yesterday. So needless to say, I'm back on the indomethacin until I see the neuro.
I don't know if it is helping, I didn't have that many a day before I started the indo. I also don't know if chronics also go through heavier cycles sometimes. Don't know much period I guess. Normally, my hits vary from one to four a day. I have started taking dramamine every night. Last week I went 4 nights without waking up with one. O2 will stop most of them, but then it seems another will hit within a hour and a half. The only thing seems to be the dramamine makes me so groggy, I almost can't find the 02.
Hope ya'll find something that works,
PFDAN
Roxy
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The mad viking
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Re: Now what?
« Reply #11 on: Jan 14th, 2003, 3:12pm » |
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The only kind of headache that i know of that Indomethicin doing something great for is CPH
They tried that stuff on me,and just about 5 minutes after taking that stuff they could see what i had for dinner 14 days ago on the floor.Even told the doc that i have stomackproblems and using meds for that.
And that bastard called him self neurologist.Crazy vet if you ask me.
But as i told you Indomethicin is the miraclesmedications for CPH.If you dont have that ,its better to stay away from it.
Its common to give you Indomethicin to test if you have CPH or cluster.its the esayest way to separate those 2 headaches
Svenn
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Dizzie
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Yes, chronics go through worse cycles.
My husband usually never goes more than 4 or 5 days max without a ch, but quite often he goes through cycles of 5 and 6 headaches a day for several weeks, and then back to maybe 4 or 5 a week. This is the good part though - he hasn't had a CH since Christmas day!
The neuro upped his verapamil to 480mg a day, along with the 1200mg of Lithium he takes, and he has not had a ch since Christmas day! PTL. This is a good thing, especially since he isn't supposed to take Imitrex anymore, because of diminished blood flow to 20% of his heart. He has to have a angiogram and possibly a stint put in, or else angioplasty.
He had such a bad siege of ch's that the neuro gave him a second course of prednisone to stop it, and then upped the Verapamil and it is working. It's too scary to think about facing another go-around without Imitrex though. That is why we were wondering about the Indocin. He have him some to try as an abortive in lieu of Imitrex. Can't do Maxaalt either (and it didn't work for him anyway).
Thanks so much for all of your replies and for sharing what you know. You guys are the best. This site really helps us. God bless you all,
Dizzie
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firebrix
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Re: Now what?
« Reply #13 on: Jan 15th, 2003, 2:35pm » |
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Hi Dizzy
Just wanted to add that Mopar had absolutely no luck using O2 with an ordinary mask. It was MONTHS later, that it someone listened to me and thought to try it with a non rebreather mask and this time, it worked really well. He now has 7cu.m in the bed room and uses it whenever he feels a ha coming on, and it stops many of them.
Just made me sad that he could've had this relief earlier.
Glad he's pf tho!
firebrix
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