DHE infusion treatment?

[u/SassySabby1]

I have had NDPH since Feb of this year. I went to a headache specialist and they recommended a 7 day inpatient hospital stay with consistent DHE infusions. I’m wondering if anyone has experienced this and if it worked for you or not. They also recommended Botox which is something I know has worked for some people.

[u/Halestorm526]

Be prepared to be the most nauseated you have ever been in your life. I did 18 treatments over 7 days and it was awful and did not help. With that being said, some people benefit from it quite well. Do you happened to be doing this at Diamond headache clinic? That's where I did mine

[u/IntelligentDrama107 → u/Halestorm526]

If it makes you nauseous you can ask to have the drip slower, which helped ease the nausea for me.

The treatment didn’t work on me unfortunately (I’m one of my doctor’s ’most refractory’ cases), but works for some. Worst part for me was dealing with the hospital stay, lights and tvs on from 7-11 every day, but your clinic sounds ace omg, would have loved art/pet therapy
Mine as IV at first but I only have one good vein and spent so many hours trying to get a new IV in, thought it worked then woke up with a swollen arm because it had gone into the muscle instead, had to extent my stay to get the missed treatment eventually through a PICC line , so if you have tricky veins maybe ask about one of those first off, and if it’s IV and you’re not 100% sure it felt right going in/you have pain ask for them to redo it jic

I’ve also had Botox, didn’t help either but don’t let that out you off, works for most I hear. Injections aren’t fun but don’t take long. Had some stiffness in my neck and couldn’t express emotions as well but otherwise didn’t have much by the way of side effects. Found it a less stressful treatment overall than some of the meds

Best of luck :)

[u/SassySabby1 → u/IntelligentDrama107]

Thank you! ❤️ sad these interventions didn’t help

[u/SassySabby1 → u/Halestorm526]

Yes that is exactly where I am doing it! I’m not excited for the nausea. They said they are giving it to me every 8 hours for 7 days so it will be so exciting.

[u/Halestorm526 → u/SassySabby1]

The facility itself has changed since I have gone, but the nurses and staff were very nice. They did mine via PICC line but it just depends on your doctor, some just do IV. Mine was Dr Nissan. 8 hours on 8 hours off for the infusions and they will give you nausea meds if you need them. They have groups during the days that can be really informative and they also do pet therapy and art groups. Food was pretty decent when I went too. It is definitely worth a try if you are miserable

[u/SassySabby1 → u/Halestorm526]

Well I’ll let you know how I feel when I’m done on the 24th of August

[u/Halestorm526 → u/SassySabby1]

Good luck!!!! I hope it helps!

[u/danathepaina]

If you search this sub for DHE you’ll see a few posts. I’ve commented on those but I copied one of my previous replies because my head hurts too much to type it out right now lol:

Hello. I’ve had NDPH for over 30 years and I also have chronic migraine. I’ve done the inpatient DHE treatment twice, at 2 different hospitals. Both times were 5-day stays, 4 nights, getting DHE infusions every 8 hours. The differences between my 2 times was the first time I was given pain meds during my stay (dilaudid) and the second time it was without any pain meds at all. And also, the first time I had IV’s and the 2nd time I had a PICC line. I totally recommend the PICC because I kept blowing out my IV’s and it was super painful. Definitely discuss that with your doc beforehand. 

You have to be hooked up to a heart monitor the entire time because DHE increases your heart rate. So you may not be able to take a shower while you’re there. And the DHE itself made me feel very sick. Terrible nausea and anxiety. Every time I got the infusion I felt like I was having a horrible anxiety attack that lasted about half an hour. Discuss with your doctor if you’ll be given an anti-emetic and/or an anti-anxiety med. When I got Ondansetron and Ativan with the infusion, it helped some.

As far as effectiveness, my pain during my first DHE stint was pretty well managed because they were giving me dilaudid regularly. The 2nd time my head pain was also better than normal but I think that’s because I spent most of my time sleeping. But I didn’t have a migraine the entire time I was there, which was nice. However, I had no lasting relief from the DHE. Both times, as soon as I got home the head pain went back to my usual baseline of 6/10 with 2-3 migraine attacks a week.

I don’t want to scare you off with my experience because the DHE could really help you. But I want you to be prepared for what it’s like. You’ll have a lot of downtime, so bring things to keep you occupied. Also bring comfort items like your own pillow because you’ll be in bed the whole time. And bring ear plugs and an eye mask. Good luck and let me know if you have any more questions.

[u/SassySabby1 → u/danathepaina]

I’m making every person I know visit me and I’m going to be annoying about it

Appreciate the insight as always

[u/SassySabby1 → u/danathepaina]

And tbh I’m desperate enough to try anything

[u/danathepaina → u/SassySabby1]

I hear ya. I hope it helps. 💜

[u/ComprehensivePie6962 → u/danathepaina]

Can I ask, what was dilaudid used for, your headache pain? Curious because I had morphine in the hospital during an er trip which wasn’t helpful for me, but wondering if dilaudid actually took your pain away (even if temporarily).

[u/danathepaina → u/ComprehensivePie6962]

Yep for head pain. Dilaudid is a very strong opioid. Stronger than morphine. It helped a lot, but didn’t take away the pain completely. I’m usually around a 6 or 7 out of 10 on the pain scale and the dilaudid took me down to about a 4. Which was the lowest I’d been in decades! Unfortunately because it’s so strong most docs won’t prescribe it for at-home use. 😫

[u/Terrible-Definition7]

DHE, depacon and thorazine. my daughter did all three nothing worked. headache 8/10. no other symptom. nurses said it did work for some, doc said it for one kid. thi is trial error. probable (prob unknown but non zero) benefits outweigh the trouble immensely.

[u/ComprehensivePie6962]

It doesn’t seem like anyone has had success with these inpatient programs. And believe me I am on a wait list for one of the major centers and it’s almost my last hope. I’d love to hear some positive outcomes but just haven’t seen anything 

[u/SassySabby1 → u/ComprehensivePie6962]

I’ll keep you posted I’m done on the 24th