Macca Posted January 29, 2014 Report Share Posted January 29, 2014 Hi everyone, my POTS doc here in Melbourne, Australia has recently prescribed dihydroergotamine (brand name Dihydergot) as a vasoconstrictor. I am really interested to know if anyone else has tried it and what the experience has been. I've had problems tolerating the more common treatments such as Florinef and Midodrine, but some success with Mestinon. So, my doc wants me to give this a go. Thanks for your help. Quote Link to comment Share on other sites More sharing options...
corina Posted January 29, 2014 Report Share Posted January 29, 2014 I'd be very interested to hear other's experiences with this med too! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 29, 2014 Report Share Posted January 29, 2014 I hadn't heard of this drug so I looked it up and it doesn't appear to be available in the US, so I'm thinking that may limit the number of responses you get. I just didn't want you to think we're ignoring you. :-) Quote Link to comment Share on other sites More sharing options...
Little Miss Bounce Posted January 31, 2014 Report Share Posted January 31, 2014 I tried DHE as a migraine treatment a few years ago, I'm not sure if its used in the same way for pots treatment though? I had it through an IV over a week in hospital, it wasn't a very pleasant drug to receive though for me, I kept having allergic reactions and it caused terrible nausea and vomiting even with the medication they gave to help. Also my IV's kept collapsing so I ended up really sore and bruised and they had real trouble inserting new ones. I had to have mine slower than most people do too but on about the fourth or fifth day I developed a tight feeling in my chest, and I noticed my pulse was quite slow for me, I asked about it at the time and asked if it was the DHE and was told it was impossible it was the DHE! Unfortunately my pulse went back to its usual speed as soon as the infusion was stopped, and it didn't improve my migraine at all! It was after this that I found on dinet that DHE could be used to treat pots, so I thought it might have been possible that the DHE slowed my heart rate! But don't let this put you off, as I think everybody reacts differently and it's probably worth a try.Interestingly Corina, looking back now the feeling with the slow heart rate during DHE infusion was very similar to what it felt like when octreotide did the same thing during my octreotide challenge, although I think the octreotide was better, it lasted longer and was a lot easier to tolerate! Thanks again for all your help and advice before my octreotide challenge, it went quite well, and I have recently put in a funding request for subcutaneous octreotide, and as its the first medication I have felt helped I have my fingers and toes crossed! I hope you are relatively well, thanks again, Siân x Quote Link to comment Share on other sites More sharing options...
Macca Posted February 1, 2014 Author Report Share Posted February 1, 2014 Hi, thanks for the comments. My doc has prescribed a 2.5mg tablet, not the intravenous method. The info with the tablets note that it's for migraines and severe orthostatic hypotension. Quote Link to comment Share on other sites More sharing options...
corina Posted February 1, 2014 Report Share Posted February 1, 2014 So glad to hear that Siân!!!Macca I was wondering what your doctor would prescribe the injections or tablets, thanks for sharing. I'm keeping my fingers crossed for you and hope it will help. Let us know how you're doing on it if you don't mind! Quote Link to comment Share on other sites More sharing options...
Kelsey Girl Posted February 4, 2014 Report Share Posted February 4, 2014 Fwiw, I also use DHE (generic for Migranal) in a "puff type" nasal spray to stop a migraine from becoming rebound migraines. It works wonderfully for me. My neuro converted me to this because all other migraine meds had begun to trigger severe rebound migraines. She also gives me neurological Botox injections every 3 mos too. Not sure if this info is helpful to you but I thought I'd at least answer your question. Good luck to you. Edited to add: my neuro also prescribes topiramate (generic of Topamax) which is a seizure medication as a prophylactic for migraines. Quote Link to comment Share on other sites More sharing options...
Macca Posted February 4, 2014 Author Report Share Posted February 4, 2014 Thank you for the replies. I tried half a 2.5mg tablet and had an allergic reaction to it! So DHE was not a winner for me. Quote Link to comment Share on other sites More sharing options...
corina Posted February 4, 2014 Report Share Posted February 4, 2014 Oh, I'm sorry that happened Macca! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 17, 2014 Report Share Posted February 17, 2014 Hi Macca,I think i know who your doctor is - I live in the same city.Ive taken DHE for many years for POTS. its helpful and pretty well tolerated. My only problem with it is that the first dose works great for about 40 minutes and the second dose almost does nothing. I upgraded to other meds in the end. As a fellow aussie feel free to PM me to discuss in more detail. cheers. Quote Link to comment Share on other sites More sharing options...
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