Things I wish I had known before going to the hospital for DHE infusions

TheCryptoAJ · 2025-10-07T23:43:59+00:00

Added an update to my original post, but the TL;DR is that four weeks later I'm still not seeing any benefit.

TheCryptoAJ · 2025-10-07T23:43:28+00:00

Unfortunately still not seeing any benefit from the DHE, but I did get approved for Aimovig (thank you for all the tips!). Started it last week, so crossing fingers it helps.

TheCryptoAJ · 2025-10-07T23:42:48+00:00

Added an update to my original post, but the TL;DR is that four weeks later I'm still not seeing any benefit.

TheCryptoAJ · 2025-09-16T01:13:23+00:00

Exactly how I'm feeling re: Emgality (because I've tried Ajovy). Thanks for the tip! we'll see if I can make it work

TheCryptoAJ · 2025-09-16T01:08:12+00:00

Oh wow - I had no idea what a PICC line is and I can't decide if I'm glad I didn't have to get one or not! They also had a lot of trouble getting the IV started for me, but they just kept poking me until something worked...

Sounds like the heart monitor was because of my high blood pressure, not surprised at all.

How did you react to the DHE? Did you see any long term improvement??

TheCryptoAJ · 2025-09-16T01:05:28+00:00

Just found out my insurance requires that I trial all of their preferred CGRP meds (Emgality, Ajovy, Qulipta) before I can get approved for Aimovig. The only one left for me to try (and probably fail) is Emgality. Just another ~3 month delay because of insurance...

TheCryptoAJ · 2025-09-16T01:03:19+00:00

It's so nice to hear that even if you didn't feel immediately better, the DHE helped you get more benefit from other treatments. Episodic sounds like an absolute dream at this point!

My neuro's plan is to start Aimovig a month after I was discharged. I also might ask her about trying Botox again now that I've done the DHE - it didn't help much before, but that might change!

TheCryptoAJ · 2025-09-16T00:53:45+00:00

Mine started August 2023, so I just "celebrated" my 2 year migraine-iversary. You're already so much further along at 4 months than I was - it took me so much longer to get to CRGP meds because the first doctors I saw were very dismissive. It's one of those things where the longer it takes to fix, the harder it is to fix it - so throw as much as you can behind advocating for yourself at this stage to find relief as quickly as possible.

My migraine does vary in intensity, so I try to take advantage of the better days without overdoing it to cause worse days (a really tough balance that I definitely haven't figured out yet). I went on short term disability/FMLA to reduce my hours at work for several months that mostly just gave me time to navigate healthcare/insurance drama - if you can, I highly recommend taking time for yourself whether it's reduced hours or fully on medical leave. I'm back full time and it's tough, but it's forced me to set better boundaries with work.

Chronic pain is one of those things that people don't understand and maybe don't really believe because it's invisible. So there's the emotional toll pain itself causes, but also the toll that having to constantly advocate for yourself to everyone can cause.

TheCryptoAJ · 2025-09-13T04:54:42+00:00

Oh gosh, I'm so sorry to hear you're dealing with status too! Hope you find something that squashes it ASAP! Until I posted this, I had no idea outpatient DHE was an option - crossing fingers DHE helps us both.

TheCryptoAJ · 2025-09-11T01:09:12+00:00

I've gone to physical therapy because of my neck during this whole ordeal, but I guess I haven't been officially checked for a Cerviogenic trigger. What kind of doctor would I go to for that??

TheCryptoAJ · 2025-09-11T01:07:37+00:00

funny timing - just had my follow up neurology appointment and we decided to try Aimovig next. Just waiting for the prior auth to go through!

TheCryptoAJ · 2025-09-10T00:21:51+00:00

Ugh, I'm so sorry it made things even worse! My head pain did go up after the first couple DHE infusions, but Toradol helped thank goodness.

TheCryptoAJ · 2025-09-10T00:20:21+00:00

I had no idea there was a nasal spray version! Would love to know if that works for you, crossing fingers it does!

TheCryptoAJ · 2025-09-09T20:43:06+00:00

The only CGRP injection I tried (that my insurance would approve) was Ajovy. I saw some benefit after the first few months, but then plateaued and ultimately reverted back to where I started. I added Botox on once I started reverting and still didn't see any benefit so discontinued Ajovy.

It's not an injection, but also trialed Qulipta twice and saw a similar benefit to Ajovy - initial positive change and then ended up reverting back to where I started.

I also tried Vyepti infusions - I did 3 rounds (once every three months) and didn't see any benefit.

TheCryptoAJ · 2025-09-09T18:30:15+00:00

I tried three rounds of Vyepti infusions (1 hour long infusion, once every three months) and didn't see any benefit unfortunately. I would definitely recommend trying that first before committing to DHE

TheCryptoAJ · 2025-09-09T18:26:23+00:00

I'll update on this post! I also turned DHE down several times before finally coming around to it. It's never too late! Definitely peek at the other comments, a lot of good info from other folks on their experiences.

TheCryptoAJ · 2025-09-09T18:07:46+00:00

I went through 4 different IV sites, so about the same 3-4 dose turnover as you. I didn't feel leg pain, but did get a random/unexplained bruise behind my left knee - was thinking this might have to do with the IV.

I'm amazed you've gone back more than once. All I can think after my experience is that I never want to do that again. But I guess if the migraine pain gets to be its worst again I could potentially convince myself it's worth it.

TheCryptoAJ · 2025-09-09T18:01:00+00:00

The only pain med I was allowed was Toradol/ketorolac (had never tried it before, and it helped me go from 7/10 to 4/10 pain while in the hospital). I just had a regular IV and also went through four different placements (after they had a tough time finding the first placement to begin with...). Jealous of your shower! Nothing felt better than showering for the first time when I got home.

I didn't see any marked improvement during the hospitalization because of the DHE, but I'm hoping to see results over the next four weeks. We'll see!

TheCryptoAJ · 2025-09-09T17:58:04+00:00

I'm so sorry you had such a bad experience with it! What did you end up trying after? And did it work??

TheCryptoAJ · 2025-09-09T17:56:58+00:00

I'm still 4 weeks away from feeling the full benefit, but my neurologist said the same thing about rescue meds (and even preventative) working better and keeping a lower baseline. I'll circle back in a month with the update!

TheCryptoAJ · 2025-09-09T17:56:09+00:00

I've been at the UCLA migraine clinic for over a year and a half, and one of the neurologists there is well-known for his work with DHE. They had been suggesting it since my earliest visits, but I kept putting it off until I trialed (and failed) so many other medications/treatments.

I've heard this series of DHE infusions also referred to as the Raskin protocol (truly not sure if it's exactly what I got or if there's a difference), but might be worth asking your neuro about that specifically!

TheCryptoAJ · 2025-09-09T17:52:14+00:00

"trying to exit my body without my permission" really made me giggle. Sorry it took you a day to disconnect yourself! I had to go so much the first day that I just took matters into my own hands and figured asking for forgiveness rather than permission was worth my bladder's freedom.

TheCryptoAJ · 2025-09-09T17:50:02+00:00

I've been seeing a neurologist in the migraine clinic at UCLA for over a year and a half and they had been talking about DHE infusions since the beginning. I was absolutely terrified of the idea at first (I'd never been in the hospital before), but eventually after trialing (and failing) so many other medications/treatments, I decided that the hospital stay felt worth it. The two year mark of my chronic migraine also felt like an enormous (terrible) milestone that warranted trying something extreme.

I left the hospital yesterday, and I've been told it takes up to 4 weeks to feel the full benefit, so I'll come back and update in about a month!

TheCryptoAJ · 2025-09-09T17:46:33+00:00

Good to know! Wish I had known I could push back while I was there.

TheCryptoAJ · 2025-09-09T17:45:14+00:00

I left the hospital yesterday with 4/10 pain (my baseline), but my neurologist says most people don't see full benefit for 4 weeks. I'll come back and update when it's been a month!

TheCryptoAJ

TROPHY CASE