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Falling in love with Cafergot

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estre004
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Falling in love with Cafergot Empty Falling in love with Cafergot

Post  Sara79 Sat Oct 02, 2010 10:16 am

OK, so I know that this isn't a typical first treatment, but I've tried the triptans, and the only one that gave me partial relief was frova, due to its long half life. My attacks are usually lower pain levels (4-6on the pain scale) but they can hang on for a week, so most triptans won't stay with me through the entire attack. I talked my primary doc into letting me give Cafergot a run.


The pluses-since they're an older med, I can get many more than the frova, plus I can use up to 6 per attack or 10 per week. They're also doing well for me at stopping my attack, so I only have a short attack, rather than a week of symptoms.


The down side- there is no way I could ever try to start my family while on this med-it will either cause me to miscarry, or to give birth to a child with severe special needs. Cafergot also has caffeine (100mg per pill, which is as much as 2 cups of coffee) so if I do take the 6 per attack, I may not sleep. I've also noticed that for me, Cafergot increases my nausea, to the becoming ill point, which is not typical for my migraine pattern.


I guess I mostly wanted to remind us all of another potential tool for treatment. Hope you're all enjoying your weekend, as pain free as possible

Sara79

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Post  Anna's Mom Sat Oct 02, 2010 10:57 am

I have been thinking about this type of medication for Anna. She used to take Bellergal several years ago, which was something that actually helped her. But I know it was restricted as to how often she could take it.

I wonder if you need the caffeine, to make it effective. I would think a compounding pharmacy could concoct a version for you without the caffeine.

Last time I ordered a compounded med, the pharmacist said he usually charges $1.00 per capsule (of what I was ordering anyway).

And I wonder if something like this was in suppository form, would it work even better? A compounding pharmacist could make that also, I would think.

I'm glad you found something that helps!

Cheryl

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Post  Sara79 Sat Oct 02, 2010 12:01 pm

They do have a non-caffeine version, so you wouldn't have to have it compounded, it was mostly my doc saying it would help it kick in faster, and since I'm not extremely caffeine sensitive we went with that. I was at the point where I needed to try something new, and strangely, I'd never been given an ergotamine, since I started having trouble right after Imitrex first hit the market, and they wanted to go with the newest medicine, especially since I'm a woman of childbearing years and ergotamines do cause birth defects.



I figure it never hurts to try a new approach, especially since the triptans were only bringing my episodes down, but not knocking them out completely. I guess as a fair warning, I do have more dizziness with the Cafergot compared to a triptan, but I'd rather be a little dizzy and not hurting.

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Post  milo Sat Oct 02, 2010 5:41 pm

Cafergot is my drug!

I get it compounded with gravol. There is a product called gravergol that has the ergo, caffeine and gravol in it.

This is the best drug I have ever used.

The down side is very limited amount per week, though I just discussed this with my pain spec and he said I could do 14 per week....but I only have a few weeks of the three month cycle that I would need this.

This plus two t3's (minus the caffeine) can break most of my cycles.
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Post  Paradox Sat Oct 02, 2010 6:29 pm

I'm not sure I ever tried cafegot either...

I came in during the Imitrex trials too...

I have no problem with old school. I feel more comfortable with something that's been around a long time and has KNOWN side effects.

I'm well past child bearing and couldn't if I wanted too, so that's not an issue.

Hmmm....
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Post  Ivy Mon Oct 04, 2010 12:51 am

It's my drug.
I've been using it for 15 years and it's the only effective drug.
What dosage do you take? I use the 200mg suppositories. I can use up to 3/attack and 5/week. In Europe standards are stricter...

I spoke with my OB gyno about cafergot and getting pregnant.
She told me that it's - of course - forbidden during pregnancy, but that it's not a problem till the fetus is attached to the uterus (i.e. till the pregancy test is positive).

Bye
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Post  tdu Mon Oct 04, 2010 5:19 am

I tried it a few years ago, and didn't have much luck with it. It works well for my Mom though.

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Post  Sara79 Mon Oct 04, 2010 6:30 am

Ivy, I had to hit the internet to figure it out, but I've got the ergotamine tartrate USP 1 mg and caffeine USP 100 mg. They are oral tablets, which is what I've had almost exclusively, but I am finding that the nausea can be much worse with the cafergot. But, I do have zofran prescribed to ma, so I can always take the zofran with my first dose, to lessen the nausea.

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Post  Ivy Mon Oct 04, 2010 8:39 am

Sara,
you're right about the nausea. It can be bad and sometimes it can turn into vomit, but it's "worth" as it works 99% of the times.

Oral tablets are less efficient than suppositories for me. During migraine, my stomach is not very cooperative and I may not absorb the tablets. Suppositories work much better.

I take ginger tablets along with cafergot and they work.

Take care
Ivy
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Post  estre004 Wed Oct 06, 2010 12:03 pm

I'm with Ivy on this one. It has given me life. I rarely CANNOT abort a migraine. I take it in the form of a nasal spray.
If taken when I'm only having an inkling of one coming on, it wipes it out in seconds. If I wait too long, I end up using the
whole vial and it may take some time 30 minutes to 3 hours but it still works. I've even taken it while suffering a 10 and was
able to abort it within hours instead of days. I don't go anywhere without it. I'm so surprised more people don't use this.
I asked a doctor where I work for advice and that was his number one suggestion. I know some people on the forum have tried it
and it didn't work for what ever reason but from what I can tell, most people have not given it a try.And yes, it is as old drug which
must get lost in all the new ones out there. In fact, it wouldn't surprise me if it is a money thing with all the new so-called effective drugs
out there that don't work for a lot of people anyway. A lot of money is being made off of them.

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Post  Migrainegirl Wed Oct 06, 2010 10:36 pm

Do you need a prescription for this?
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Falling in love with Cafergot Empty I would love to try this class of drugs

Post  lentils Thu Oct 07, 2010 1:26 am

Neither the neuro nor the GP would write a script for me here in Australia. Both gave the vague reason "too many side effects" and GP says they affect peripheral circulation. I'm hoping I can try it when I get to the US.

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Post  Ivy Thu Oct 07, 2010 1:27 am

Estre004,
it's my big fear, too....I am totally SCARED that one day they might decide to withdraw it...I could die!

Migrainegirl, in Europe you can find OTC brands of ergotamine, but I doubt that in the US they're available. It takes a prescription.
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Post  Sara79 Thu Oct 07, 2010 4:02 am

Migrainegirl- Yes, in the US it is a prescription medication, as Estre suspected.

So I began to have another M last night, took my zofran, about 20 mins later took the cafergot. Slept very well considering I'd just had the equivalent of 4 cups of coffee right before bed. Woke up at a 0, which I think is amazing!

I am somewhat light sensitive still, but that's minor, and I can handle wearing my very beloved sunglasses, rather than still being at a 2 and knowing as soon as the frova wears off I'll begin to ramp up again pain wise.

Thank you all for sharing your thoughts! I'm glad to hear that this is helping some of us, and that maybe this can be a possible weapon in the migraine arsenal for some of the rest of you.

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Post  estre004 Thu Oct 07, 2010 8:49 am

lentils - I have no side effects from it. And as for the nausea, that could be from the migraine itself, not the cafergot. I only get nausea when I have a full blown migraine. If I take the drug at the beginning I have never had nausea so probably is the migraine itself. My doctor prescribes nausea pills also that work fast.

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Post  kathy Fri Oct 15, 2010 3:28 pm

I used Cafergot for about 20 years and it was the best rescue med for me. Then I stared to have chest pain and a racing heart slow fast that I couldn't even count. If I was standing and talking to someone I could feel myself slowly passing out. I would cough real hard and get the rhythm back to normal.

I hated losing Cafergot! It worked so well. I had to go through extensive heart tests before I could try a Triptan. I passed but they just don't work as well.

I hope it works for you. kathy

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Post  estre004 Mon Oct 18, 2010 7:13 am

It is my miracle drug. Wish more people would try it. Works 100% of the time if I take it soon enough.

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Post  Sara79 Wed Oct 20, 2010 9:27 am

Thanks all for sharing your thoughts! It took one from an 8 to a 0 overnight, so I'm still a definite fan

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Post  pen Wed Oct 20, 2010 9:38 am

We are getting this inhaler version in UK supposedly "soon".
They seemed very positive about it. It is supposed to nullify some of the side effects used that way.

P

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Post  Ivy Thu Oct 21, 2010 12:16 am

I tried the nasal spray many years but it was not very efficient.
I must try to give it a second try.
Pen, what's called the spray here in Europe? Can't recall what I used
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Post  pen Thu Oct 21, 2010 5:03 am

I think this is it Ivy. Levadex, and it will be inhaled like an asthmas inhaler which is supposed to get it into the body much quicker and avoid side effects.

http://www.news-medical.net/news/20101021/MAP-Pharmaceuticals-to-present-nine-analyses-on-LEVADEX-for-migraine-therapy-at-2010-EHMTIC-congress.aspx?utm_source=twitterfeed&utm_medium=twitter

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