Dihydroergotamine, DHE experience?

[FunTimes]

 Does anyone have any updated information on a Dihydroergotamine infusion treatment? 

I just signed up for a 3 day treatment and am wondering if anyone has tried this? Lookin for the good, bad and ugly effects I may encounter. 

[CHfather]

If you type DHE into the searh bar, you'll see a lot of reports.  This one is from "Boston Headache Doc," (from 2014). As you may know, he is a physician who is strongly committed to patients with CH and to the ClusterBusters organization.

"DHE 45 is dihydroergotamine, hence it is an ergotamine, but one with poor oral absorption. So it is given in other routes- as a nasal spray, under the skin (subcutaneous injection) or intravenously. There is even an inhalation product in late development.

On occasion I admit patients to hospital for DHE intravenously every 8 hours for a few days- works in most people but often the attacks of cluster come back after the therapy. Can give patients a much needed break, emotionally useful, even if the break is only temporary.

I also prescribe DHE vials, then come in packs of 10, and patients can inject under the skin- it is not that hard to do. Patients could use this as a once off abortive, or use it twice to three times a day for 48 hours to try and break the cycle.

While you are on an ergotamine you should not be taking triptans however, and also not any other ergotamine derived substance (hmm).

Those with known cardiac disease or peripheral vascular disease cannot use this treatment."

[Back to me]  From all I've read, and from what BHD says here, I think DHE is mostly effective as an abortive, but maybe it can give a short-tem break or in some cases break a cycle.  I don't know how responsive BHD is to PMs, but I suppose it might be worth trying him to see what his more recent experience has been.

Edited October 12, 2023 by CHfather

[FunTimes]

Thanks for the reply CHF, I have looked at a few posts from the past, I was hopping someone has tried this recently with any long term positive or negative response. I know that if they had a positive response they probably will no longer be hanging around this site but its worth a try. I have reached out to a few of our doc friends up north for some info as well. I will most likely just give this thing a go and report back here how it went. Nothing to lose at this point and being chronic ill take a short 3 day break any time and way I can get it. 

Thanks for all you do here on this site, been reading your posts for quite some time now.. Your a good person!

[Bejeeber]

1 hour ago, FunTimes said:

Your a good person!

Understatement alert! ^^^^ 

I bet you do get some some days of relief @FunTimes. Feeling confident enough to go public with that prediction right here, and looking forward to having been proven right when we get your valuable report on how it has gone.

[FunTimes]

So I did the treatment this week, Monday-Wednesday, Each day I was given 2 treatments that took about 6 hours each day. This is the concoction I was given:

Day 1 of 3 
IV Benadryl 25 mg
IV Reglan 5 mg/5 mg
IV DHE 0.25/0.5
IV Solumedrol 100 mg
IV Mag 2 g

Day 2 of 3 
IV Benadryl 25 mg
IV Reglan 10 mg/10 mg
IV DHE 0.5/0.75
IV Solumedrol 100 mg
IV Mag 2 g
 
Day 3 of 3
IV Benadryl 25 mg
IV Reglan 10 mg/10 mg
IV DHE 0.75 mg/1 mg
IV Solumedrol 100 mg
IV Mag 2 g

No clusters from the start of treatment, during treatment and relief lasted 36 hours after the last treatment. I was hit with a very small cluster that I aborted with oxygen in 5 minutes and than another about 2 hours after that. Hope they are just little slap back type and I can keep thigs calm over the weekend. not expecting a cure here just a little break from the head banging. 

[spiny]

That is pretty positive! Has your break continued today too? You certainly need it!

[FunTimes]

Weekend update is not bad but much better that things were, depending on how you look at it. Friday had 3 what I would call very minor hits lasting about 5 minutes each and killed with oxygen. Saturday had 2 hits but one of the 2 lasted about 20 minutes and needed the help of a 5 hour drink to kill it off. Sunday wad one hit that woke me up that also needed the 5 hr dink helper shot to kill it off in about 30 minutes. 

Weeks leading up to this treatment were getting slammed up to 6 times a day all of them were 30+ minutes and a lot of 5hr drinking, ice and whatever else I could get. This is all after a September that had me looking over the edge of that cliff! Busted a few times to bring it down to the 6 a day then did this treatment to try to get into a better place. Now I can start to think a little better and find a new strategy. I love it when Clusters make a change and kick you in the face to let you know you still have a friend! 

Only a week since the start, Not sure what this will end up costing me yet but overall things are going better. 

[BoscoPiko]

So glad to hear this. Seems like the important part is the simple fact that you are doing better! I'm still really lacking the ability to think all that well..(went to get sweetener to put in my coffee this am and almost dumped some wet cat food in it instead)... my husband telling me that he already fed the cat was all that stopped me from dumping it in.. uff brain fog is serious sometimes! The cost of everything sucks rt now so my apologies to your wallet. I sure hope you get a break!

[FunTimes]

So 2 weeks out from the last infusion day and still feeling much better that before I had this done. I am still getting hit 1 to 3 times a day but they are MAYBE a 3 on the cluster scale and last only 5 to 10 minutes most with using oxygen. I have only had 1 5Hour energy drink in the last 2 weeks and am still on the same M60 tank so that itself is a big help in the pocket. I am thinking about tossing a bust or 2 into the mix next week just to see if I can get this knocked out totally for a few days but am a little nervous that I will F something up and fall back into hell again. Currently getting the little hits overnight and it still sucks to wake up and hit the 02 tank but I can deal, I can work and get a tun of things done during the day again. So far I am pleased and would recommend but I have not gotten the bill or know how long this will last yet so that may change my mind..

[FunTimes]

4 weeks out from last treatment and still hanging in. Not complete pain free but now averaging about 7 clusters a week instead of a day, for me that is as close to pain free I have been in years. Question now is do I do a bust to see if it puts me over the edge to total pain free or do I hold out and see how long this last. I am afraid to rock the boat with a bust and have it set me back. 

[FunTimes]

Just an update on this 3 months out. Still going good. Had a 15 day break from any clusters in December, Small hit on Dec 30th lasted maybe 10 minutes with 02. Jan24th was my next hit that lasted maybe 5 minutes on the 02. 

Not saying this is any type of cure at all but something you may want to look into or ask about. It is a huge improvement for me. 

[FunTimes]

Seems like this DHE treatment finally wore off. Back to daily hits started on the 1st of February and are intensifying each day so far. 

It was fun wile it lasted, time to get back in the game. 

[devonrex]

Sounds a bit like my experience, scrambled them for a month, including less hits and lighter ones, the next month was a random schedule but lessened, the three and fourth month they began getting steadier and came back fully by the end of the 4th month, mind you I had some home dhe injections for a few weeks after.

[FunTimes]

I do have the DHE injections but have yet to use one as I was told they are an abortive and not as much of a preventative. I do have another infusion scheduled for the end or March but do not think I am going to keep it. things are not really that bad at the moment, I am only getting maybe 7 hits a week and not every day so in my book that's a win. I might just try to bust now and see if that works any better for me now that the clusters are kind of held down a little. 

[FunTimes]

Update to this just for notes.. I went back in for another infusion last Monday and Tuesday, only 2 days of treatments this time. No clusters after the first day. I think this did help the last time as it got me out of a bad spot and I did have a few multi day cluster free breaks. they did creep back up to about 2 or 3 a day so I scheduled this last treatment. I have not had to use any triptan or the DHE injections they gave me for home use. I think maybe this time around I will mix in some alternate medications to see if I can just get on top of this crap and keep them suppressed longer.