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zacsz

Ex Member

Going in for Migranal Infusion.
Dec 8^th, 2011 at 9:07pm

Hey all,

This is a quick post because I'm kind of wrecked from the day. It's been a rough week, to say the least, and I'm now going in for a migranal infusion. This is both a heads-up to all the members who have been so helpful to me, and because I have a few questions. Obviously, I can and will discuss all of these with my doctor, but I'm not being admitted till Monday and they're really nagging at me.

1. Migranal has been given to me many, many times in the ER and has never helped. Is the extended drip any more likely to do so?

2. Because of that concern, does anyone know what happens if I continue getting attacks while on the drip?

3. Has anyone here failed on the Migranal drip, but been given other successful medication during their hospital stay? (I know this is extremely specific to me if it doesn't work, this one is mostly out of curiosity.)

I think that's it. Again, all of these will be discussed with doc eventually... but won't see him until after the weekend is up.

Thanks

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Going in for Migranal Infusion. Reply #1 - Dec 8^th, 2011 at 10:19pm Quote: migranal infusion Are you referring to a DHE infusion??? If not, could you explain further?
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zacsz Ex Member	Re: Going in for Migranal Infusion. Reply #2 - Dec 9^th, 2011 at 1:36am Yes I am sorry!!
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69Strat CH.com Junior Offline Girls, Guitars, German Shepherds Posts: 42 Gender:	Re: Going in for Migranal Infusion. Reply #3 - Dec 9^th, 2011 at 7:36am Had DHE. No headaches while on the drip (3 days). Returned 24 hours after leaving the hospital. I've heard though that others have had longer results. Hope you're one of those.
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zacsz

Ex Member

Re: Going in for Migranal Infusion.
Reply #4 - Dec 9^th, 2011 at 9:52am

Yes, my doctor has been sort of resistant to doing it based on the fact it's never worked in the emergency room and I'm not really on a solid preventative right now, so I don't know why they wouldn't return when I'm off of it. I'm chronic, so there's no exact cycle to break, but I am in a wicked high one. I am in very good hands, though, so obviously I'ma do what the doctor wants and trust he'll figure it out if it fails.

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Brew

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Re: Going in for Migranal Infusion.
Reply #5 - Dec 9^th, 2011 at 3:56pm

I've had the IV-DHE treatment twice, but it wasn't a drip. I was on a constant IV of saline and the nurse would come in every 8 hours and push 1mg of DHE-45 VERRRRRYYYYY SLOOOWWWWLLLYY (otherwise it burns like hell) through the IV right after giving me an IV dose of Reglan for the nausea it will cause.

I was pain free for the entire 3 days in the hospital and about 36 hours after discharge. Then they came back with a vengeance for about a week. After that week had passed I got 9 months of relative pain-free time.

Both times my neuro admitted me it was at the end of an 18-month-long period of chronic multiple daily attacks.

Was it worth it? During the 9 months of pain-free time that followed, it sure was.

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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand

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zacsz

Ex Member

Re: Going in for Migranal Infusion.
Reply #6 - Dec 9^th, 2011 at 4:54pm

Oh, for sure, 9 months of pain-free time would be worth it.

Will the DHE definitely cause nausea? I can't have IV compazine, reglan, or zofran because I have a pre-existing anxiety condition and all of them trigger such severe anxiety for me I have had complete panic attacks in the ER and once tore out my own IV as a result. I'm sure there are probably other anti-nausea medications they can use in any case that might cause less anxiety, or since I am prescribed Xanax already I suppose there's no harm in requesting a low dose of an IV benzo if it has to be one of those medications... the benadryl never helped with the anxiety as they said it would whenever I was given a toridol/benadryl/compazine combo in the ER. I have taken oral compazine before with no issue so maybe they'll just do that. Compazine is the worst for me IV in terms of the panic attacks, but the very thought of IV Reglan literally sends chills down my spine. Undecided

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« Last Edit: Dec 9^th, 2011 at 4:58pm by N/A »

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Going in for Migranal Infusion. Reply #7 - Dec 9^th, 2011 at 5:36pm I really don't know. Talk to your doc. Good luck.
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ssherron

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Re: Going in for Migranal Infusion.
Reply #8 - Dec 9^th, 2011 at 9:46pm

When I get a DHE treatment it usually buys me about 6 months pain-free. Mine is more like a cocktail of medicines. I get 8 medications altogether, and go in 3 days in a row. It takes about 2 and 1/2 to 3 hours each day. They start with Benadryl, then Reglan for nausea (I guess you couldn't do that one.), then Toradol (anti-inflammatory), then the DHE. That is followed by decadron (corticosteroid with anti-inflammatory effects), magnesium (to decrease spasms), Phenergan and finally Zofran(both of course for nausea). I am usually knocked out within the first 30 min. of the treatment, and vaguely aware of everything that is going on in the infusion room. It is well worth the 6 months it gets me.

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zacsz

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Re: Going in for Migranal Infusion.
Reply #9 - Dec 10^th, 2011 at 6:17pm

SSherron, thanks for the reply, and as I see it's your first post, welcome to the board. I'm not sure all my doctor is planning on doing in terms of a cocktail; I saw him last week but mom had to call him to set up the admission because I've been so slammed and just couldn't even find enough PF time to discuss it. Obviously I'll be able to get some more information upon admission monday... I would not be entirely surprised if he does a cocktail on his own, especially given the fact I have in the past had no response to DHE, abortively... both the nasal spray at home and IV in the ER. I know the infusion is a totally different ballgame, but that fact can't help but make me worry. As I said, I'll do whatever he thinks is best and just hope it buys me some time one way or another.

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Imitrex4Breakfast

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Re: Going in for Migranal Infusion.
Reply #10 - Dec 11^th, 2011 at 9:50pm

I've had the DHE infusions many, MANY times before. They claim that an infusion of DHE could possibly abort cluster cycles all together, but it never aborted my cycle. It does usually help though. A single 1mg dose can last up to 24-36 hours for me sometimes.

When I had the IV doses, I'd ALWAYS make sure the nurse diluted the DHE in a saline flush (10ml) so the injection of DHE could go in slower. A 1mg IV dose should take about 3 full minutes to infuse into an IV. The faster it hits your blood stream, the more likely of side effects (nasuea, vomiting, stomach pain, increased blood pressure, etc). It's almost impossible to push a 1 mg dose slowly if it's not diluted. Slower is MUCH better !

I give myself up to two 1mg IM doses of DHE-45 every day to prevent attacks. (That does greatly exceed the recommended dosage of 6mg per week, so I wouldn't recommend that for anyone. It will cause heart problems and vein scarring.)

IV Solu Medrol also stops my attacks for up to 24 hours at a time. (Must use VERY sparingly and ONLY at a hospital)

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PlayDoh

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Re: Going in for Migranal Infusion.
Reply #11 - Dec 12^th, 2011 at 12:51am

Try Batch's Anti-Inflammatory Preventative Regimen for Cluster Headaches. It worked the first night I tried it, and I was pain free on the second night. Been PF since. Batch himself is PF for 14 months and he was chronic also, and there are numerous others. Check the link to his thread and many responses to it. I've added it below. If your willing to try a DHE, this shouldn't be a concern what-so-ever. Grin

A multi-vitamin, covers the Magnesium & zinc, and I haven't even added Vitamin K yet, although I will soon.

Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360 mg/day, DHA 240 mg/day)
Vitamin D3 *    - 10,000 IU/day
Calcium **       - 500 mg/day (calcium citrate preferred)
Magnesium       - 400 mg/day (magnesium citrate or magnesium gluconate)
Vitamin K ***    - 120 mcg/day
zinc                   - 10 mg/day
Boron                -    1 mg/day

This regimen can be taken any time of the day, but it's best taken in the morning with an 8-oz glass of lemonade, limeade, or any fruit juice high in citric acid sweetened with with a little honey. Honey is a natural source of Boron, which is listed as one of the "cofactors" along with magnesium, vitamin K and zinc. by Batch

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My whole hearted advice;
Give it a try if you haven't, it certainly wont hurt. You could be pleasantly surprised as I was. Please if you do give it a try, please provide some feed-back via a quick survey. I would be happy to provide you a link to the survey once your ready.

If possible, perhaps you could have your 25(OH)D serum levels checked prior to trying the regime but certainly not necessary.

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As strong and tough as CH's are, I AM STRONGER!

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zacsz Ex Member	Re: Going in for Migranal Infusion. Reply #12 - Dec 17^th, 2011 at 2:06am Was pain free whole time in hospital. Made it 12 hours in between DHE doses the last full day and the following morning. Was discharged, and no sooner did I get home did I get a nice kip 6... 5 hours after my last DHE dose. Dunno what's wrong with me.
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69Strat CH.com Junior Offline Girls, Guitars, German Shepherds Posts: 42 Gender:	Re: Going in for Migranal Infusion. Reply #13 - Dec 17^th, 2011 at 7:47am Nothing wrong, other than the CH. Same result for me wth the DHE. Fine until out of the hospital. Research other threads for treatment options with emphasis on the oxygen and D3 regimen on this one. It can take some trial and error to find what's most effective for you. Hang tough, good luck.
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anthony g CH.com Old Timer Offline I Love CH.com! Posts: 318 manhattan nyc Gender:	Re: Going in for Migranal Infusion. Reply #14 - Dec 17^th, 2011 at 7:48am Hey Zac So sorry to hear that you have pain again my friend. I have been thinking about you. Im here for you man. I texted you the other day. Im here for you the best way I can. Anthony
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Going in for Migranal Infusion. Reply #15 - Dec 17^th, 2011 at 10:02am Dunno what's wrong with me. Not a damned thing. A slightly different hypothalamus. Hang in there. Joe
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Imitrex4Breakfast CH.com Veteran Offline Posts: 200 Kentuckiana Gender:	Re: Going in for Migranal Infusion. Reply #16 - Dec 23^rd, 2011 at 2:19pm DHE comes in a nasal spray called "Migranal" that can be taken at home with an RX from your doc. Just DON'T over-do it or you'll be asking for a heart attack. Also, don't mix with Triptans within 24 hours.
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