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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Officially diagnosed! Sumavel sounds awful
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Message started by Lightbearer on Mar 12th, 2013 at 1:55pm

Title: Officially diagnosed! Sumavel sounds awful
Post by Lightbearer on Mar 12th, 2013 at 1:55pm
Finally, after 7 years of moron doctors insisting I am getting all kinds of stupid nonsense, a headache specialist has diagnosed me.

He gave me sumavel. It sounds terrifying. It uses air to force the medicine through the skin?

Can someone tell me how this feels? Granted, I'd rather experience this than the CH itself, I can't imagine you can do this over and over without running out of injection sites.

I'm not worried about how painful it is; I'm worried about how strange it is.


Anyone?

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Guiseppi on Mar 12th, 2013 at 4:30pm
The first time I used Imitrex, it was a little spooky. Wherever you inject it, you can feel the medicine, for me it's almost like snakes swimming up my bloodstream. Then it hits the head and WAM beasty is gone!! Pretty amazing stuff.

That being said, read the oxygen link on the left. For me it works almost as fast as the injectors, it's much cheaper, and no side effects.

Joe

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Bob Johnson on Mar 12th, 2013 at 4:32pm
This technology is around 50-yrs old/established. It works so quickly that you don't have time to have a reaction (except anticipation-which is under your control.)

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by ndhillst on Mar 12th, 2013 at 8:15pm
Using it for me was no problem and felt a bit like a bee sting.  If possible, I much preferred O2.  It worked within 15 min for me and I didn't get a "rebound" headache afterwards (better than the CH, but still left me in a bit of pain).

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by wimsey1 on Mar 13th, 2013 at 9:14am
Agreed with all of the above, with one exception. With so much talk of "rebounds" from using imitrex, I want to say I have never had such an experience. I suppose if you are shooting it 3 times a day or more it is possible, but I think most research indicates rebounds are not the issue. What is at stake is recurring headaches. blessings. lance

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Lightbearer on Mar 13th, 2013 at 10:50am
So, the weird puff of air isn't incredible weird feeling? Also, I can't believe how expensive these are. I have extremely good health insurance, actually better prescription coverage than anybody I've ever known, and so I don't worry about the cost but, how can they charge so much for a 50 year old technology that delivers a 30 year old medicine?

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Brew on Mar 13th, 2013 at 11:11am
These conventional meds can be CRAZY expensive.

Why not try to prevent all this in first place:

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Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Lucifer on Mar 15th, 2013 at 3:25pm
Money is not the issue for me. I am almost ashamed of how good my Rx coverage is, thank you SUNY and Aetna.

However, I would prefer to minimize the money I fork over to companies who perform the most unimaginably cruel laboratory tests on helpless animals who don't give consent. (this is not a matter of debate, don't try)

I will be/am trying the vitamin regimen. I am curious, a 50,000 IU loading dose of vitamin D3? Seems high.

PS.

Rhodiola rosea might be worth looking at. I take it for energy and concentration and I swear this has been more manageable the past few weeks.

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Brew on Mar 15th, 2013 at 3:32pm
50,000 iu loading dose once per week is pretty tame compared to what some MS patients take as a loading dose.

I took a loading dose of 50,000 iu once a week for a month while taking 20,000 iu per day all the other days. It took me 2 months of tinkering around with the dosage until I went pain free. That was a year ago.

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Lucifer on Mar 15th, 2013 at 11:00pm
It's just incredible that this can help you *possibly* become pain free.

I looked in the mirror and noticed my left pupil was dilated more than my right, my face has started sweating on the left side, tearing in left eye. It's a fucking countdown now.

This is the worst thing about these headaches. I am feeling worse by the minute and once I get a watery eye I know I'm in for a bad one.

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Bob P on Mar 16th, 2013 at 7:49am
Air injection has been around since I went to boot camp in 1969.  It doesn't hurt as long as you don't move while it's injecting.  Flinch and it will slice your arm open.

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by jess-MTL on Mar 18th, 2013 at 6:44pm

Brew wrote on Mar 15th, 2013 at 3:32pm:
50,000 iu loading dose once per week is pretty tame compared to what some MS patients take as a loading dose.

I took a loading dose of 50,000 iu once a week for a month while taking 20,000 iu per day all the other days. It took me 2 months of tinkering around with the dosage until I went pain free. That was a year ago.


I am curious about this... The highest IU pills for D3 I found were 1000. So what, I would have to take 50 one shot?

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by jess-MTL on Mar 18th, 2013 at 6:56pm
The Imitrex shot is not the best feeling in the world, but with the pain you're in when you take it, who cares.

It works almost instantly; you can feel the medication go through your system, and when you feel that hot feeling in your neck, you know the pain is about to end. I had hubby do the shot for me, so it wasn't worse than  a shot in the hospital. I did start getting rebounds after a while, so I have stopped using it. I bought a great mask, and have learnt to use O2 correctly instead.

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Wayne on Mar 18th, 2013 at 8:11pm

jess-MTL wrote on Mar 18th, 2013 at 6:44pm:
I am curious about this... The highest IU pills for D3 I found were 1000. So what, I would have to take 50 one shot?


Yup, thats what you have to do. It seems many countries have a restriction on the amount they are allowed to sell. Here they even try to track it. For a while I felt a bit like an addict, going from pharmacy to pharmacy to get my D3 fix :)

Title: Re: Officially diagnosed! Sumavel sounds awful
Post by Mike NZ on Mar 19th, 2013 at 4:10am
Never had any issues buying D3 myself, even when buying more than a years supply at once at the "standard" 1000IU dose at a time.

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