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MarkHW
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DHE Infusion
« on: Jul 16th, 2002, 8:59pm » |
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I have now been on prednisone for 3 months... every time I start to go off of it the clusters start back.
So.. my neuro has signed me up for a DHE Infusion next Thursday. I was told it will be 2 hours of DHE IV and that I will need a driver to take me home afterward.
Anyone have experience with this? What does this do? Has it worked for anyone else?
I read some where they give you anti-nauseants with it... This concerns me because I have had very bad reactions to anti-nauseants in the past.
Thanks for your help!
Mark
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The clusterhead formerly known as williamsmh.
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BobG
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Re: DHE Infusion
« Reply #1 on: Jul 16th, 2002, 9:21pm » |
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I've never had the treatment but it doesn't sound very promising to me.
Under the medical info button is this statement about Dihydroergotamine
For the patient having an attack in the physician's presence, intravenous dihydroergotamine (DHE) rarely fails to about the episode within 5 minutes (Raskin, unpublished observations).
Or click here to see what Georgia said about DHE
http://www.clusterheadaches.com/wwwboard/messages/89366.html
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MarkHW
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Re: DHE Infusion
« Reply #2 on: Jul 16th, 2002, 9:27pm » |
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Thanks!
I'm not sure why my neuro is trying this....
I see him next Friday (the day after the infusion).
I'm on 600 mg lithium and decreasing prednisone (at 20 mg / day right now).
Not sure why he isn't upping the Lithium. It was promising at first, but then stopped working.
Maybe he'll start me on something else the day after.
Something needs to happen... I'm having at least 2 clusters per day, every day! Other than brief breaks while the prednisone was at 40 mg ... this has been going on since early February!
Mark
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The clusterhead formerly known as williamsmh.
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NotH20
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Re: DHE Infusion
« Reply #3 on: Jul 18th, 2002, 1:15pm » |
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Hey Mark - sorry to hear that things are not going well for you. I'm not sure what you mean by "infusion" but I can tell u my experience w/ DHE. I was put in the hospital for a 3 day treatment which lasted for 6 days (they messed up the dosage on day 2 and day 3 so I stayed some extra time on the higher meds). I really believe that this DHE IV stopped the cycle and allowed my other meds to kick in and do the job.
It's really a whacky med and you will get sick if you don't take something like phenergran (sp). You really do need someone to drive you home and if you continue this medicine at home, you may want some help with the kids. After my DHE routine - I was still on high dosages of Topomax, Keppra, Verap and O2 - the combination of the 2 anti-seizure meds anlong w/ the DHE really temporarily messed up my motor skills and constantly made me 2nd guess what I was doing.
I wish you a lot of luck w/ this. Justin just had a similar treatment and it didn't work for him - been chatting with him. On the other hand I've read some posts from Barbara (not sure which one "G" or "D" and she strongly believes in the DHE.
We all know the routine - what works for some that suffer does not work for all that suffer. Sorta like the Russion Roulette Game of Medicine! 
Please keep us posted on your progress - I'm sending out good thoughts for you.
Mia
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MarkHW
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Re: DHE Infusion
« Reply #4 on: Jul 19th, 2002, 7:59am » |
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Thanks Mia!
I'm not sure what an infusion is either... the neuro said it was "like" an IV....
I don't know what to do about the nausea.... I have a horrible reaction to anti-nauseants.... Since the ER always thinks headaches are migraine - they have given me anti-nauseants with other meds in the past... I get horrible anxiety attacks that last days after....
I would rather barf then go through that again.
The funny thing is that my clusters seem to be cutting down at this point... I'm down to about 1 a day instead of 2 or 3. I don't want to cancel the treatment, though because I never go more than a few days between cycles.
Mark
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The clusterhead formerly known as williamsmh.
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NotH20
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Re: DHE Infusion
« Reply #5 on: Jul 19th, 2002, 10:20am » |
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Mark - I think I know what he's talking about with an "infusion."  It's actually like an IV in your arm, but you are not connected to an IV bag that hangs - they just come in a give you the meds right into your vein.
I don't know what to advise you regarding the anti-nausea meds. I can tell you that you will be REALLY sick if you don't take something prior to the dose.
How long are you going to have this treatment?
Mia
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MarkHW
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Re: DHE Infusion
« Reply #6 on: Jul 23rd, 2002, 11:00am » |
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It's supposed to last about an hour and a half....
I can not take anti-nauseants! I had horrible panic attacks for days after anti-nauseants the last 2 times they gave them to me. I literally couldn't sit still, sleep, function.....
So.. unless there is something different that won't have that affect....
Mark
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NotH20
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Re: DHE Infusion
« Reply #7 on: Jul 23rd, 2002, 3:01pm » |
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Mark - I guess 2 more days till D-DAY huh?  I'm sure everything will be fine - maybe there is something that the doc can give you that won't make you sick - there are so many meds out there.
I wish you much luck with this treatment....please keep me posted on your treatment - would love to hear another DHE success story.
One word of caution Mark - I wasn't able to use any abortive (Imitrex, Zomig, Maxalt) for 24 hours prior to the DHE - you may want to give your doc a call and see if it holds true for you too.
Mia
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MarkHW
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Re: DHE Infusion
« Reply #8 on: Jul 25th, 2002, 11:05pm » |
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Hey Mia... It's midnight here and I'm wide awake.
Had the treatment this morning... Got there at 7:45 AM and didn't leave until 11;45 AM. Slept most of the day.
They gave me
1 shot of bennadril
3 shots of DHE
1 shot of toradol
1 shot of cortazone
The bennadril was for nausea and didn't give me the anxiety attack!!!! I almost had one waiting for the drugs to work because I was so worried about going through the same thing I did in the ER the one time.
But it was fine.
So far no cluster or migraine...... We'll see how long it lasts.
They told me no food or drink or meds 12 hours before the treatment... which I managed ok.
I go to the neuro tomorrow. We'll see what he says... I want off all my current meds cause they aren't doing a thing. I'm on 600 mg lithium, 20 mg prednasone (and decreasing), and 20 mg paxil. I've asked about uping the lithium but the nurse keeps saying no... I intend to ask tomorrow. I'm running out of choices.. I've been on all the meds listed except a couple of the anti-seizure ones.
I had 3 clusters on Tuesday (the 3rd was my fault - had a beer with dinner)... so why take drugs that make me tired when they're not working????
Well... we'll see - maybe the dhe bought me some time.
Mark
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NotH20
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Re: DHE Infusion
« Reply #9 on: Jul 26th, 2002, 7:11am » |
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Hey Mark - well I'm glad to hear that yesterday was FINALLY over for you. I'm sure that you were anxious about the treatment - especially w/ the meds that you already know make you so sick. Thank goodness they found something that worked for the nausea. 
Was that just not some of the scariest hours before they start the treatment? I had to be totally med free (no abortives) for 24 hours prior to my treatment - I waited the entire time for the other shoe to drop.
I had to resort to the anti-seizure meds too this last cycle...if they put you on anything, let me know - I'll surely give you my experience with them. You are right though - there is NO reason for you to be on meds that are not working. Chat with your doc today and express your feelings.
Please keep me posted after your appt. today - I'm sending out good vibes for you.
Mia
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Samiam
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Re: DHE Infusion
« Reply #10 on: Jul 26th, 2002, 7:50am » |
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Hi, I did the DHE 45 thing years ago....I was in the hospital for 7 days....first to get me off the fiornal (went through about 150 them in 2 weeks) the latter part for the DHE IV....well it does make you sick as hell....and like you, I can't that the nausa stuff either.....but about 4 yrs ago I was hit with a bad bout out of the blue they started and the first went on for over 2 hrs.....of a number 10 I was going to rip the house apart when hubby put me in the truck and rushed me to the ER...first time in 21 yrs that I ever went there......and the DR listen to me and he too did something like the other person got.....and it worked great.....there is also a new drug out that works with out that...I wanta kick a window out feeling....I'm sorry I don't know what it is but I found that I could take that......as for all the rest I told them there is no way your comin anywhere near me with those nausa drugs.....Good luck, the IV didn't work for me but when I came home the Neuro made me get up everyday an hr before I got my cluster and inject myself with the DHE45 I did that for about a month and it worked out great for me.....but they won't do that again.......Robin
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What doesn't kill you only makes you stronger!
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NotH20
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Re: DHE Infusion
« Reply #11 on: Jul 26th, 2002, 10:44am » |
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Robin - why won't they put you back on the DHE treatments????
NotH20
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Samiam
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Re: DHE Infusion
« Reply #12 on: Jul 26th, 2002, 12:32pm » |
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since then I changed Dr's when I got preg. with my second child old neuro dropped me so fast....he didn't want the risk of me and the clusters I did the preg with no drugs.....seems also that I had some heart problems when I took it like that had a mild heart attack at 32.....new neuro today just gave me the dhe45 nose spray....so we will try that, also gave me a seziure drug to take at night......I also have Stadol but I've not used it yet (too afraid to start) I think as of today I have 3 weeks left in my cycle (I'm sure hoping.....I was in remisson for 4 yrs so this is a new thing).....Robin
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What doesn't kill you only makes you stronger!
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NotH20
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Re: DHE Infusion
« Reply #13 on: Jul 26th, 2002, 12:34pm » |
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WOW Robin - sounds like you've thru the ringer....
Glad to hear that your cycle will be soon ending....
NotH20
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