Dihydroergotamine (DHE)

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Post by Tee on Mon Aug 15, 2011 2:27 am

Dihydroergotamine (DHE) is an ergot alkaloid. It is similar to sumatriptan but also interacts centrally with dopamine and adrenergic receptors. It can be used to try and break the cycle of a prolonged migraine attack, acute intractable headache or withdrawal from analgesics. It is given via IV over a 5 day (ish) period, hence it is given in hospital. Some people have great results with it. - Anyone tried it?

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Post by akrohn on Tue Aug 16, 2011 7:23 am

I just had it, Tee, last week. Here in the US, some clinics will give the transfusion outpatient. Fortunately, the clinic my neurologist just moved to does that. I had been miserable with a migraine for 3+ weeks before I went in for the transfusion. I do not know the doses, but they gave me DHE, Magnesium, Decadron, and Compazine. It took about 3 hours for the medication to run in. When I woke up the next morning, my headache was gone. Since DHE is usually given several days in a row (3-5 is what I was told), I called the doctor to ask if he wanted me to continue to get the IV infusions. His response was "if it isn't broke, don't fix it". So, I ended up having great results with just one day of medication.

That was not the case the first time I had DHE, about 5-6 years ago. At that time, I had been suffering for about 6 weeks. I went to see my GP and burst in to tears, I was just so worn down. She sent me to the hospital across the street and I was admitted for 3 days of DHE, Phenergan, and Toradol treatments. I had not-so-great results that time. I vomited for the entire time I was there, and as soon as I saw the first sign of my pain letting up, I went home.

So, even given the mixed results that I have had, I think I would still choose to try it if I were in a similar situation. As I'm sure you have felt before, after feeling so bad for so long, I was ready to try nearly anything.
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Post by whitzendJane on Wed Aug 17, 2011 9:04 am

Although not a huge success for me it did give me my only pain free day in 5 years..and as that day fell on my friends wedding I had a fantastic time and danced the night away.

I would have had it again but my body cannot cope with heavy duty drugs these days and it wasn't an option for me.

I tolerated it really well and spent 4 days having the infusions as an inpatient. Had a bit of an upset tum during treatment but nothing that would put me off doing it again if I was able to.

I know of many people who regularly have this treatment and get excellent results. As long as you are properly screened and monitored this is something I would recommend you try.

Jane
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Post by Tee on Thu Aug 18, 2011 9:18 am

Its nice to read people having results with this - something I think most people should try, if the mig is protracted.

I have had it once, via IV over 5 days, and had to have it given very slowly as I had a rapid heart beat with it. But other than that, no side effects. It did reduce my pain a little bit, but really did not work for me Sad

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Post by Laura on Fri Aug 19, 2011 12:38 pm

I tried it - twice. The doc gave me a choice - in the hospital as an IV or at home. I used it at home/work. It was prescribed as a subcutaneous injection given every 8 hours. The first time I did not wake myself in the middle of the night - so the series lasted 5 days. Pain was gone on day 2 and 3 - then it came back. Then the second round - about a week later - I took it every 8 hours around the clock. The series lasted 3 days. Pain was gone on day 2, mild pain on day 3, then it was back full force. I still use it occasionally as a rescue med - sometimes I get some relief sometimes I don't.
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Post by Katie on Sun Aug 21, 2011 7:54 am

Tried once at hospital - never again giove me nerve blocks instead.

The spiders!
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Post by akrohn on Sun Aug 21, 2011 10:41 am

Spiders?
I haven't ever had a nerve block. DO they do these at the base of your skull?
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Post by Katie on Sun Aug 21, 2011 6:44 pm

Yep spiders- I had ergot induced hullucinations of millions of tiny black spiders crawling in and out of my skin.

Nerve blocks- site of injections can vary depending on locus of pain. Normally I need them around my eyebrow and they work backwards tracking the worst of the 'ows'. Do bear in mind I have ECH as well as migraine so I get offered slightly different treatment options to another person who has just migraine. They are best left in the hands of a consultant neuro' though as they carry risks.
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Post by Tee on Sun Aug 21, 2011 8:35 pm

I have had two nerve blocks - here in the UK they tend to block the optical nerve - which runs up the back of your neck close to your ear. They are given by the neuro and it takes skill to do it - as every person is slightly different - some people have them on just one side and others on both side.

My first one worked quite well and reduced my pain down a little the second one was not as good.

Even tough its more injections I would however recommend Botox over a nerve block. But we are all different.


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Post by Tee on Sun Aug 21, 2011 8:35 pm

btw the spiders sounds horrendous - poor you Sad

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Post by akrohn on Sun Aug 21, 2011 11:20 pm

Oh goodness! The spider hallucinations would have probably killed me. I am scared to death of them, after having been bitten by brown recluse spiders twice.
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Post by Sassy_bratt81 on Wed Jan 25, 2012 4:16 pm

Well living in the states it is given a little differently. One time I was given it via IV in ER and was sent home two hours later after it gave me some minimal relief. I had it one other time since and was hospitialized for five days with DHE and Dilauted being given to me via IV and I was really out of it but that 5th day my migraine finally went completely away.

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Post by h.tomlinson on Tue May 08, 2012 10:41 pm

I will hopefully be have having this in the next few weeks. I am crossing everything after 8 yrs of constant pain. I am not wondering why I was not offered this before. My neuro has run out of ideas so I am suspecting he does not think this will work for me and is trying it as a last effort. Crying or Very sad
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Post by Tee on Thu May 10, 2012 8:22 am

Some people have great success with this..... so positive thinking..... I have heard it can upset the tummy in a few (It did not in me)... So pack a few more nightclothes Wink

Lets hope it works a treat and you come out pain free - do let us know how you get on x

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Post by sarlyka on Sat May 12, 2012 3:00 am

I had this last month as an inpatient. I was so optimistic and the first day was fantastic - 24 hours with no pain! Then I got a migraine Sad They stopped the infusions, called the neuro team for advice. I was given some whacking great doses of Oramorph to deal with the migraine then they restarted the DHE. I had to stay in hospital for an extra day, had another migraine too.
Sadly, it didn't work. I had two more migraines shortly after I got home and last week had an absolutely horrendous one.
I emailed my neuro consultant and he's reviewing my case to see what else he can offer.

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Post by Tee on Sun May 13, 2012 8:58 pm

I am sorry to read that sarlyka Sad............it did nothing for me too... so your not alone......... I can ask where you are? Which hospital are you with? x

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Post by sarlyka on Sun May 13, 2012 11:24 pm

Hi Tee: Stuart Weatherby is my consultant at Derriford Hospital, Plymouth.

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Post by Tee on Mon May 14, 2012 12:10 am

Fab - I sat next to him at a dinner last year - nice guy who knew his stuff.... I wanted to make sure you were with a good doctor as that can make so much difference....

Did he say why Botox would not help?

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Post by sarlyka on Mon May 14, 2012 12:38 am

He is one of the best in the country so I'm very lucky that he's also based at my local hospital. He didn't say why Botox wouldn't help but I'll ask him at my next appointment.

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