So I've started this horrible journey with cluster headaches at the beginning of the year. My neurologist has tried every drug for me and oxygen. I went in for my 2 week check up last week and he told me that he wants to admit into the hospital to run some medication through a IV. I was wondering if anyone else has had this done?

I should be in the hospital at the end of this week, had to get my FMLA paperwork completed. I'm so tired of these headaches. So painful, so exhausting. I always tell myself that that was the worst headache ever. They've gotten pretty bad the last month, so I'm hoping that this medication works.

Please let me know if you guys have been admitted for CH.

Thanks.

Any idea of what the medication is?

Sorry about that. It's DIHYDROERGOTAMINE.

I have not had this done.  However, there are a number of folks here who've been admitted for an IV course of DHE.  I'm hopeful that some of them will chime in before long.

Hope it works well for you. 

Best wishes,

George

Thank you.

I've had the IV DHE treatment twice. The relief was almost immediate. 1mg every 8 hours for 10 doses. 3 days.

Both times the headaches returned within 36 hours of the last treatment. Then a week from hell (almost as if the pain I avoided during those three days was piled on top of the normal course). But within a week after the treatment, they went away. For 9 whole months each time.

Your mileage may vary, but I did get some extended relief after a really bad week once I got home.

Hi Charm.  I just perused your posts and have a few comments or questions.  You can disregard if you want or if you don't find it helpful.

You say your doctor has tried a bunch of meds, is he/she a specialist in the clusters or merely a neuro with a vague familiarity with our condition?  I haven't done the pharmaceutical route, but many here have and I bet if you listed the doses and medications they could have some opinions for you.  There are medications that tend to work for people better than others.

Did you get your O2 setup?  how many liters per minute?  What kind of mask.... Some people have no effect at lower doses as some have already pointed out. 

Caffeine for the daytime hits effective at all for you?  Effective for many here.

Melatonin works for many for nighttime hits.  Tried it?

Also have you checked out the cluster busters website and video/articles?  My preferred method for those hard to break cycles. 

So pardon my inquisitiveness, I am just trying to keep you out of the hospital if possible (I hear the food isn't that great ;)).  I am sure you have read a bunch on this website, but there is a ton of info.  After being here for a few years I think most of us are very similar.  Even though not everything works the same for everyone, there is enough stuff that works for many/most of us that specific things are worth a try. :)

Good luck!! :-/

--Shaggy

Thanks for the information. I will let you know how it goes.

The only other in-patient procedure for CH (excluding surgery) that I remember around here is histamine desensitization.  We had a fellow here a few years ago who'd had it done several times. 

As I recall, it didn't work all that well--provided a couple of weeks' relief each time.  Cost around $20,000 a crack.  Haven't heard anything about the procedure since that time.

Best,

George   

Sorry you are being admitted Charm, hospitals SUCK  ;)
I hope you don't have to stay too long!

Please let us know how the treatment goes.
Best of luck to you!!

I've been in for infusion therapy twice. The first time was a week in hospital... extremely boring and it didn't really help a lot. I slept a lot and had some very vivid dreams. Second time was outpatient for 3 days. I'd go in first thing in the morning and leave around 4. That time it helped a lot, but it didn't last very long.

The idea behind this is to break the cycle of pain.

-Chris

My experience was similar to Brew's. I've had DHE IV twice, and each time it did bring relief. First time, for about a week. Second time, for almost three months. It's pretty innocuous, as such things go. And hey, any relief is relief, you know what I mean? Let us know how you make out. Pax and prayers! lance

I also had the DHE infusion done in the hospital.  I only had one hit in the 5 days I was on the IV.  The day I got out, CHs back to normal. 

Good luck with better success Charm - bring lots to do in the hospital!  :P

Val

Shaggy had some good questions for you.  We are not Drs, but we've spent enough time and money with them to have paid for a Doctorate for many of us.  That being the case we do have a pretty good idea of what levels of medications are needed for CH relief.  For instance, when I was on Verap I was using about four times the dosage a friend of mine was on for very high blood pressure.  In fact my pharmacist called the Dr because he thought the dosage was to high.  A lot of Drs without much experience with CH are afraid to take the dosages high enough to be effective for us. 

Free advice is always worth every penny you pay for it. :D, but most of us have already paid the price.

Jerry

Charm,
I read back over your posts and you said that the headaches started about 6 months ago.  I could be wrong, but I don't think you could have tried all the prevents in that amount of time.  Any idea what drugs you have tried (and their dosages)?

Carolyn

I've had the DHE treatment 3 times First one was in hospital, The next 2 were outpatient. The last one I had went for about 2 weeks. It never cured my Ch's but it gave me a well needed rest. I was getting 3-4 attacks daily each lasting 3 hours. I had been chronic for about 8 years the first time I had it done.

Been there. Done that. The DHE IV broke a 9 month cycle.