Hello from my hospital room

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Hello from my hospital room

Post  Platypus on Wed 22 Jan 2014, 7:06 am

I'm getting the DHE infusion treatment at Kaiser Oakland. Should be 3 days. It all happened quite fast. I told my neuro I wanted to do it, and he booked me in the next day. I didn't even know if he'd approve it. Just checked in this evening and have had first two injections. Definitely need some help here, have had pretty much round the clock high level migraines for weeks. Will let you all know how it goes.

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Re: Hello from my hospital room

Post  tortoisegirl on Wed 22 Jan 2014, 9:44 pm

Wow that did happen quickly. Good luck! I hope everything goes smoothly. Wishing you no side effects, and better yet, some migraine relief. Best wishes.

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Re: Hello from my hospital room

Post  Platypus on Wed 22 Jan 2014, 10:14 pm

Thankyou TG. Not having any side effects. Did have a migraine today - mid-level pain and it was in and out.

BTW I tried Methadone which I know is your therapy of choice. It made me really sick. That was a horrible day. But now I know.
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Re: Hello from my hospital room

Post  Cluelesskitty on Thu 23 Jan 2014, 3:14 am

Good luck with it!
isn't it nice when for a change something goes right for us!

Risa

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Re: Hello from my hospital room

Post  Platypus on Thu 23 Jan 2014, 6:34 am

Thanks Risa. I won't be able to judge the success of the treatment for a while.
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Re: Hello from my hospital room

Post  tortoisegirl on Thu 23 Jan 2014, 9:52 pm

Funny how different meds affect us so differently. Sorry the methadone didn't work out for you, but as you said, now you know. Do you know what dose they tried? A typical starter dose would be 5mg, opiate tolerant or not.

Hope the DHE side effects continue to stay away, and you can get some relief. How is the hospital itself?

They want to have me do an inpatient stay for about a week once I can take the time off (try a switch from methadone to suboxone). Ive never stayed in the hospital, so the idea is a bit scary. Sounds like a combination of boredom and misery (from the withdrawal so they can start suboxone), but its time.

Although the methadone is really good for my headache pain, it is causing a lot of side effects. Hoping I get lucky and the suboxone works for my pain, as I don't know of any other options besides getting back on the preventative merry go round, as I heard it put once; its quite fitting actually.

I've currently having deja-vu with that as I'm on Gabapentin for leg movements in my sleep. I hated it for headache prevention and seemed to get every side effect in the book, but I figured it was worth a try for a low dose at night (vs. a high dose three times a day), plus it had been so long since I tried it.

So far so good actually. Hubby has been sleeping better without me shaking the bed so much from leg jerks! Hoping I see some benefit soon too. Thanks for checking back in! Good luck. Best wishes.

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Re: Hello from my hospital room

Post  Platypus on Thu 23 Jan 2014, 10:03 pm

They started me on 20mg Methadone. I was given 10mg and observed for about 30 min, then the other 10mg. Every oral opiate I've ever taken has had the same effect: nausea, vertigo, anxiety. It was just worse w/ Methadone because it's long acting, and I think more powerful at the dose I was given.

This  is also my first hospital stay and I was very anxious coming in. My blood pressure was high. But it's been fine. Mainly boring. I can't web surf much because looking at the screen aggravates my HA's. It's a problem at home too. I brought my yoga mat and I've been doing yoga -- that's been a life saver.

Everything about Suboxone seems superior to Methadone, except there is the problem w/ the blockade effect. Are you concerned about that?
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Re: Hello from my hospital room

Post  tortoisegirl on Fri 24 Jan 2014, 6:58 am

I think that was way too high of a dose to start you on since it builds in the system over the course of a day. In 30 minutes, it wouldn't even have started to kick in. Its a unique med in that it is long acting in the system, but the pain relief is actually only 4-8 hours, depending on the person.

I'm closer to the 4 hours, and take it four times a day. Sounds like you probably would have got some side effects at even the low dose. Sorry you get that with every oral opiate you've tried. So does it go better with IM or IV? Do you take anything as an abortive?

Yes that would be a concern, but apparently it can be manageable. My doctor claims he has patients who can use extra suboxone for breakthrough pain, but for most whom it works for their pain, they don't need anything extra. I worry as my pain varies a lot. I still want to give it a try though, so there won't be that "what if".

Also, the doctors want to rule out hyperalgesia from the methadone before considering raising my dose in the future. That is when higher doses of opiates cause you more pain. Funny thing is that patients are often switched to methadone for hyperalgesia.

Not sure how much I buy into the hyperalgesia theory. Although I have some of the associated symptoms, I don't seem to meet the main diagnosis criteria, as higher doses decrease my pain and lower doses increase my pain.

If someone on suboxone gets in an accident, they could sedate them until they could administer pain meds. For milder issues, they can just give you more suboxone. The other thing with suboxone is that you have to be in withdrawal to start it (or not on any opiates), so thats a tough one. Best wishes,

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Re: Hello from my hospital room

Post  Platypus on Fri 24 Jan 2014, 11:34 am

Yeah in 30 minutes I wasn't feeling a thing. I think they were just looking for an allergic reaction or something like that. I'm not sure if it's the oral route that makes me sick or the particular meds. Dilaudid and Demerol don't make me sick at all, but I've only had those by injection. Dilaudid is useless, it wears off after a brief time and my HA is back.

Demerol is effective usually. My current neuro refuses to prescribe it. My last neuro prescribed it, but I think I got into a rebound cycle w/ it. My HA's became daily while I was using Demerol as my abortive (and I was using it daily). Now I have DHE which works well, but I can only use it twice a week. My migraines are still daily even though i weened off Demerol. Why? Because fucking Novartis discontinued my preventative (Methysergide) which has kept me functional for the last 12 years.

I've done some research on daily DHE, and it seems to be out there as a treatment (Lawrence Robbins mentions it, some patients mention getting it), but there is VERY little info on it. Oh, and there's a nation-wide shortage of DHE now. When I get out of the hospital in a couple days I won't be able to get it. Isn't that great?

Yeah I guess you can take more Suboxone if you need more pain relief, but it does have a ceiling effect at 32mg. Maybe that's a huge gorking dose?

Since you're transitioning from Methadone you will be in withdrawal right?
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Re: Hello from my hospital room

Post  7777Trinity on Sat 25 Jan 2014, 9:29 am

Platy:
Hoping this works for you!!! Prayers being said for you too!!

Trinity
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Re: Hello from my hospital room

Post  Platypus on Sat 25 Jan 2014, 12:04 pm

Tnx Trin. Procedure is complete. Going home later today.
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Re: Hello from my hospital room

Post  Cluelesskitty on Sat 25 Jan 2014, 3:32 pm

How are you feeling, Platy? I hope it was well worth staying in hospital, and all.

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Re: Hello from my hospital room

Post  tortoisegirl on Sat 25 Jan 2014, 8:38 pm

Glad you are going home too. Any results yet? Do you have any DHE left at home? Hope the shortage is gone soon. Seems like that has happened a lot with a lot of meds lately, or at least I've been hearing more about it.

I heard its at least partly due to the overall increased demand for meds between the baby boomers and people taking more meds in general, but who knows. Wow thats crazy you can't get the Methysergide. I guess there must have not been money in it for the manufacturer anymore?

Any chance they would let you try the long acting form of Dilaudid? Its pretty new. Its called Exalgo, and is typically taken every 24 hours. If they were willing to let you try Methadone, it sounds like they could be willing to try that. Only catch is it is very expensive.

Have they tried you on some of the newer synthetic pain meds, like Opana and Nucynta? Both come in short and long acting forms, but again, are brand only. They hit some different receptors that the other meds, so some folks have success with them who didn't do well on other meds. They weren't for me though (I required too high a dose for Opana and Nucynta made me dizzy even on a tiny dose).

Yes I have also read 32mg is the ceiling. Apparently for chronic pain they would typically use doses much lower than that, but we'll see. No guarantees it will even work for my pain or that I could tolerate it. Yes I would be in withdrawal if I stopped the methadone.

Since it has such a long half life, they are talking about switching me to something else in the weeks before the hospital stay, to lessen the time I'd need to be in withdrawal. They start the Suboxone at a certain level of withdrawal symptoms, not a set amount of time, or else it will precipitate an even worse withdrawal. Best wishes.

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Re: Hello from my hospital room

Post  Cluelesskitty on Sat 25 Jan 2014, 9:32 pm

I just remembered - Sansert (methysergide) is still available in USA in generic form, I think. It is still available in Canada,
and I think it is available in other countries as well. It does have serious side effects,
http://www.rxlist.com/sansert-drug.htm

so perhaps if you could go to,  I dunno,  - Mexico,  you could still get it if it helped you so much?
Just a thought..

Risa

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Re: Hello from my hospital room

Post  Platypus on Wed 29 Jan 2014, 10:55 am

Sansert is gone from the world. There is no brand or generic. The chemical, Methysergide cannot be obtained for compounding. Yes, it was not profitable. Isn't capitalism great?

A lot of reports I've seen on Opana and Nucynta list HA as a side-effect so I'm not real excited about those. I didn't know about the long acting Dilaudid, but it's oral I assume, which I consider a joke. The bioavailability is so poor, I don't know why they even bother to make it.

The DHE infusion therapy worked well in hospital. I still had migraines every day, but instead of round the clock pain at the top of the scale, I had intermittent pain at about #5. Not great, but much better. Unfortunately when I got home, things went back to the way they were.

So I put myself back on the protocol I was on in the hospital -- 1mg DHE every 8 hrs (although subQ, not IV) and I'm getting just as good results as I did in hospital. My doctor is supportive, at least for now, but from my own research I'm placing myself at risk of ergotism, which is really nasty. I can't find any hard data, just a lot of scary warnings. I don't really know what to do...
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Re: Hello from my hospital room

Post  Sara79 on Wed 29 Jan 2014, 6:26 pm

I take Nucynta PRN for ovarian cysts, it's about the only option I'm not allergic to, so it's that or OTC only. I have on occasion gotten a headache the next day, but it's just a headache, about a 2-3 on the pain scale, and it responds well to an OTC NSAID. I know everybody's different, but I wanted to share my experience.

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Re: Hello from my hospital room

Post  tortoisegirl on Wed 29 Jan 2014, 9:54 pm

If you have a doctor willing to support trialing opiate pain meds, I think any meds you haven't tried like Opana, Nucynta, and Exalgo are worth a try. With any med there is a risk of side effects. Just about every medication lists headache as a possibility actually. If it occurred, it would likely be much shorter and less intense than a migraine anyways.

The more important statistic from the study to look at is actually the percent difference in the side effect between the medication and placebo. Once I saw one where a side effect occurred 15% of the time, but the placebo had a 14% incidence!

Poor oral bio-availability just means that the dose would be adjusted. For pure opiate meds, there is no dose limit....its all about your tolerance to the medication and how bad the side effects get at the higher doses.

There is much more data on daily opiate pain meds than daily DHE or even Triptans, so personally, I would go that route first. Its not without its own risks and challenges though. Sorry the pain rebounded back so quickly, but glad the subQ DHE has been helpful. Best wishes.

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Re: Hello from my hospital room

Post  Platypus on Thu 30 Jan 2014, 3:31 pm

Good points TG. I have a rx for Pizotifen on the way from the UK. If that doesn't work I may ask my neuro to try Exalgo.
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Re: Hello from my hospital room

Post  tortoisegirl on Sat 01 Feb 2014, 1:37 pm

Haven't heard of that one; had to look it up. Looks to be a pretty unique, having antihistamine and antiserotonin properties. So did you have a doctor here willing to write a prescription, then you used a UK pharmacy? Hope it helps! Best wishes.

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Re: Hello from my hospital room

Post  Platypus on Sat 01 Feb 2014, 5:37 pm

My neuro is very much a DIY doctor. He will give me almost anything I want, but he never has any suggestions to offer. I ordered Pizotifen through one of the typical Canadian online pharmacies. It's sourced from the UK.
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