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cash5542
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dhe limitations
« on: Aug 1st, 2007, 8:15pm » |
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Ok the packages all say to be careful not to use dhe too much, generally 7 injections max a week yet Lisa's doctor has been using it continuously for 2 weeks as many as three shots a day. He is one of the top at Jefferson so I'm trying to trust but I am a bit leary. It also seems to be finallyworking somewhat. Any thoughts on this?
Charlotte
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E-Double
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Re: dhe limitations
« Reply #1 on: Aug 1st, 2007, 8:25pm » |
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I'd trust Jefferson.
It's nasty but most of the meds and the packaging pertain to the fda's regs which pertain to migraineurs.
We have to take more.
Imitrex (yuk) states that one shoul not take more than 2 shots in a 24 hour period.
I remember days taking 4-6 and know others who have doubled that.
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UN solved
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That seems to be a large dose of DHE. If the doc is recommending this, I'd make sure to ask about side effects. It is a powerful vasoconstrictor.
3X a day for an extended period would have to be hell on a body. I wouldn't recommend it  ( But, I'm no doc )
Goodluck
UNsolved
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rolo65
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on Aug 1st, 2007, 11:03pm, UN solved wrote:That seems to be a large dose of DHE.... It is a powerful vasoconstrictor.
3X a day for an extended period would have to be hell on a body.
UNsolved |
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I did the DHE 3 times a day for five days in the pic line. The doc wanted me HA free for 24 hours before quitting. I still had shadow, but said it was gone because the shit was killing me, and I just couldn’t stand the pic line anymore. I was also having chest pains.
I’m going to ask my neurologist about IV Histamine Desensitization, do you have to be hospitalized for it? Where do they do it? How long does it last?
Roland.
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Pinkfloyd
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Re: dhe limitations
« Reply #4 on: Aug 2nd, 2007, 1:22am » |
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on Aug 1st, 2007, 8:25pm, E-Double wrote:It's nasty but most of the meds and the packaging pertain to the fda's regs which pertain to migraineurs.
We have to take more.
Imitrex (yuk) states that one shoul not take more than 2 shots in a 24 hour period.
I remember days taking 4-6 and know others who have doubled that.
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Well I have to disagree with just about everything you just said. 
It's nasty but most of the meds and the packaging pertain to the fda's regs which pertain to migraineurs.
What makes you think that safety regulations pertain differently to migrainers than clusterers? Do we possess some sort of immunity to an overdose of DHE that migrainers do not possess?
We have to take more.
No, we don't HAVE to take more. We have more distinct headaches than migrainers do, and we'd LIKE to take it more often.....but we don't HAVE to.
Imitrex (yuk) states that one shoul not take more than 2 shots in a 24 hour period.
Yeah. 12mg per 24 hour period. Does your package say that is the max for migrainers but everyone else can use all they want?
I remember days taking 4-6 and know others who have doubled that.
Yeah, and you're lucky (as are the many other cluster people that do use more than the recommended number of doses/mgs). Not too many cluster people use 8 or 12 shots per day. Especially not at the 6mg dose.
As far as DHE. It's one thing to use a lot over a short period of time, such as a 3-5 day IV drip or taking 3-5 shots per day for 5 days. Its quite another to do this regularly and for an extended period of time. Who knows...you might be ok but OTOH, if your heart doesn't give out, your toes may turn green and fall off.
Everyone is different and there are some vascular systems that can take it and others that can't. This has nothing to do with either being a migrainer or a cluster sufferer.
I know we often break the "rules" but that doesn't mean the rules don't apply to us. We just say f*ck it sometimes.
Bobw
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E-Double
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Re: dhe limitations
« Reply #5 on: Aug 2nd, 2007, 8:20am » |
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I certainly do apologize as I have written probably a irresponsible message to a darling person and I do thank Bob for the feedback.
It was/is certainly not meant as a recommendation as if you know me I do not ever do so.
What got lost in translation was the fact that what we tend to do is more of the meds that are recommended for people with other headpain and many of the doctors although they would have to be careful in recommendations against what the meds say do allow us to take more if needed.
Other than that I do apologize if 1 post f-ed up any support or proper information that I have provided over the yrs.
All the best,
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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swimchica623
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Re: dhe limitations
« Reply #6 on: Aug 2nd, 2007, 10:02am » |
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Eric, don't worry, your words were almost the same as the nurse at Jefferson. I'm sitting in the waiting room reading this right now actually! Careful monitoring is important (to make sure my heart doesn't stop and my toes don't turn green and fall off!!) and they are doing just that while doing the mega doses of DHE. Now I'm twiddling my thumbs wondering what they are going to do next....thinking I was at my limits of DHE but according to the nurse since my heart and toes are doing just fine I might not be. So like its been said here many time, everyone is different.....
Lots of love from the darling girl with the sore butt,
Lisa (and Charlotte)
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Guiseppi
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Re: dhe limitations
« Reply #7 on: Aug 2nd, 2007, 10:33am » |
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You kill me kid, your sense of humor never falters!!!! Keeping you in our thoughts and prayers at the Guiseppi household, you're going to have "buns of steel" just from the scar tissue of all the injection sites by the time they're done with you!!!!!!! Luv ya kid.
Guiseppi
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swimchica623
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Re: dhe limitations
« Reply #8 on: Aug 2nd, 2007, 10:58am » |
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auugh they are keeping me here! oh well at least that means no more butt shots.....ill get better but then they will have to cure my internet withdraw......
one of the good things about jefferson is this thing called jeffnet...wireless internet in most of the places including waiting rooms, but it doenst reach the hospital rooms, grrrrrrr........
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rbmb
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Re: dhe limitations
« Reply #9 on: Aug 2nd, 2007, 4:45pm » |
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My neurologist told me that long term usage of DHE can cause scarring of the heart valves. Don't know if this is true of Imetrex also.
Rich
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UN solved
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DHE is not to be overused like Imitrex often is !! It can and will kill you !! ( Or your toes could fall off  )
Ask questions and Follow your doctors instructions exactly !
UNsolved
PS. Good post Bob !
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| « Last Edit: Aug 2nd, 2007, 5:27pm by unsolved1 » |
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rolo65
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"Imitrex (yuk) states that one should not take more than 2 shots in a 24 hour period."
These guys are right! If the docs don’t say so, don’t do it ever! It is scary to even think people upping their meds. With Imitrex, if it doesn’t work what take more and more till it does? That’s crazy and a sure way to induce a heart attack. And then there is the rebound K8-10 HA attacks from even using the max daily amount. I won’t even use it or Maxalt any more.
Too much DHE can collapse all the blood vessels in you brain (instant brain death).
I never take more than 1 shot of DHE in a day unless told to by the doc. I also never take it two days in a row because it then becomes ineffective for me anyway.
When I used to use Imitrex, I never used more than 2 - 6mg bottles in a day and at most half a bottle per shot. My heart would go nuts if I did the whole 6mg at once (smoker).
If anyone is doing this, they should get the so called “thinking part of there head” checked out! Maybe on way too much Topamax!
Rolo..
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| « Last Edit: Aug 3rd, 2007, 7:37pm by rolo65 » |
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Pinkfloyd
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Re: dhe limitations
« Reply #12 on: Aug 3rd, 2007, 12:06am » |
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on Aug 2nd, 2007, 8:20am, E-Double wrote:Other than that I do apologize if 1 post f-ed up any support or proper information that I have provided over the yrs.
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No problem E. Really.
No need to apologize.
1 post would never tarnish all the good you've done over the years.
Sometimes we end up typing like we are having a private conversation with someone else and the words, emotions, etc don't always translate well.
I never look at a post like that (yours) as a bad thing. Its all an exchange of information based upon our years of experience and even disputable or questionable information only serves to allow for further discussion and clarification of the correct (from different viewpoints) information.
It's always good to be able to discuss warnings and the problems some of our meds carry with them. If no one ever admitted to doing 8 shots of Imitrex a day, we'd never think of talking about the dangers.
Nothing wrong with 18-20 posts about DHE and its dangers and benefits. IMHO, it beats the hell out of 120 posts on the border patrol.
alls good...carry on my friend,
Bob(10 toes)w
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cash5542
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Re: dhe limitations
« Reply #13 on: Aug 3rd, 2007, 1:29am » |
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I appreciate all of the thoughts and various experiences. I am leary about how fast doctors prescribe without discussing how much, how long, what side effects and all of that stuff. I was told the Verapamil also is prescribed in high doses for CH. I'm going to begin questioning everything from now on regardless of who is prescribing. Lisa has a daily EKGwhile she is inpatient at Jefferson.Thanks again for all the comments.
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cash5542
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Re: dhe limitations
« Reply #14 on: Aug 3rd, 2007, 1:34am » |
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I almost forgot, Rich, what is your doctor's idea of long term use? A month , several months? This is one of the things Im trying to figure out although I know its different with each of us.
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rbmb
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Re: dhe limitations
« Reply #15 on: Aug 7th, 2007, 1:30pm » |
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Sorry to be so slow to reply. I didn't pin him down on the question of what "long term use" is, but as you probably know, CHs can last for some time. My last couple of cycles have been around 5 months long and I've used DHE pretty much throught the whole cycle. I'd consider 5 months pretty long term.
Rich
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brauer100
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Re: dhe limitations
« Reply #16 on: Aug 12th, 2007, 11:09am » |
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I am new to the site, and this is the first thing I decided to post to. Chronic cluster headaches in chronic cycle with daily headaches 12-15 times per day for the past two years, day and night, in extremely bad cycle for past 58 days. (Before that, I had episodic clusters misdiagnosed as sinusitus since the age of 11.) I read this thread and got scared so I decided to post this question to you to see what you think. I got put on IV DHE for 7 days over last week after high doses of nasal Migranal (which is also DHE), which wasn't effective enough. Now I'm back on nasal DHE, which I blow like it's going out of style. Yesterday in park with my kids I thought I was having an aneurism or stroke on the side of my head where I get most of my clusters (mine do bounce from side to side now and then), with this giant throbbing vein in my temple, but since it is the weekend I can't get a hold of my neurologist, right? Well, I didn't bother going to the ER because around here most ER docs unfortunately don't know crap about chronic cluster and think that I'm having a migraine, offer me Imitrex (which doesn't work for me) or more DHE, which I already have tons of in my medicine cabinet, and send me home.
So I just sat there, thinking, "Gee, I wonder if I'm about to die," and then four hours later, it eventually subsided.
So I read this string about DHE blowing blood vessels in the brain and kind of flipped out.
Do you know where I could get more info on this, or can you advise me what I should talk about with my doctor?
My problem is that Imitrex and other triptans make my headaches WORSE now. They used to work before my headaches became chronic, but now that I get the headaches so many times a day and for the past couple of years, triptans actually make my headaches much worse, and DHE was the only thing that helped at all. Oxygen works well I'm using it but as soon as I take the mask off, another headache hits. So I was really relying on DHE. If I lose that, I'm just up a creek without a paddle.
Wow, that sucks. But I'm using DHE every day, and from the sounds of it, maybe that's causing this pounding vein thing in my head?
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Brew
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Re: dhe limitations
« Reply #17 on: Aug 12th, 2007, 12:23pm » |
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Two words: rebound headaches. Sounds to me like you're using too much of it. Way too much. What kind of preventatives are you on?
Also, DHE won't blow a blood vessel in your brain. It's causes vasoconstriction. They shrink, not expand. And therein lies the problem: if you have any blockage in your coronary arteries, it may cause them to constrict too far and give you a heart attack.
Read the meds link at the left to learn about the different kinds of preventatives. Also, you may want to ask your doc about olanzapine as an abortive. Many here swear by it (I haven't had to try it yet).
If you use too many triptans you'll get rebound headaches.
Good luck and welcome!
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brauer100
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Re: dhe limitations
« Reply #18 on: Aug 12th, 2007, 8:06pm » |
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Actually, I only recently started on the DHE because I wasn't on any abortives at all (except O2) because I have so much trouble with triptans...they make my head explode for some reason. I was thinking it was probably a rebound effect. She (the doctor) put me on a massive 7-day course of IV DHE and Depakote (not as preventive, but a high course abortive).
The DHE was like the only thing working at all...I'm chronic now and it's been two years with daily clusters, so anything at all just seems like a godsend.
I didn't take anything today beyond my preventives, just letting my head get a rest. I feel like crap though.
I take 300mg Topamax and 120mg Verapamil, but I think the intention is for my Verapamil to go up...I haven't been on that one for long. I've been on lots of different preventives that haven't worked, the Verapamil is new. Topamax has been the best for me so far. I've been on it for over a year.
I worry about rebound a lot. I ALWAYS have this "background" headache that feels like horrible rebound, even when I'm not taking ANYTHING except preventives. (This was a problem before the DHE, even when I took nothing but O2.) I can't figure that out at all. It's like I've got some heinous hangover. I don't know what the hell it is, and neither do my doctors. My neurologist refers to it as a "secondary headache." It's really frustrating. I knocked everything out of my diet--caffeine, MSG, cheese, all that--didn't make a damn difference, so I just went back to eating what I want and not worrying about rebound for the most part. I think after 25 years of cluster headaches they've just transformed into some crazy, evil menace that is with me all the time.
I agree you are 100% right about that throbbing. That's gotta be rebound. I'm gonna lay off the DHE for a while. Thanks for the sanity!!
Kate
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UN solved
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It's very odd (to say the least) that Triptans make you worse while DHE helps. Doesn't make much sense, since they're both vasoconstrictors.
If you keep using DHE everyday, you'll save a ton of money on shoes and socks (since you're feet will probably fall off) and you won't need gloves either (no fingers).
You'd better learn more about the drugs you take or they're going to backfire and kill ya !!
Goodluck
UNsolved
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