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Brooke

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Hey- Newly Diagnosed and New to group!
Apr 10^th, 2012 at 10:06pm

Hey All, My journey started 9 weeks ago..I was having paid right above my eye that was the worst pain I've ever really felt. Not knowing what it was I took as much advil as I thought was safe. It took the "edge" off but didn't even touch actually making the pain go away. The pain fully subsided about a half hour-45 min later. I got the same headache 3-4 times a day EVERYDAY. After a week of this I was nervous so I went to an urgent care. They told me it was probably just a migraine and gave me imitrex pills. I took it and 35-40 mins later I thought I was dying. I felt like I was having a heart attack. I went back to urgent care and was given benidryl. I saw my primary care dr who said it was also probably just a migraine. I was not satisfied with any of this because I was still getting these horrible headaches EVERY single day 3-4 times. I read online to journal them. I did that and noticed they were always around the same time. I saw an ENT to ensure it wasn't anything sinus related and he did an MRI and suggested that I see a neurologist. Did that yesterday and was officially diagnosed with CH.. lucky me. I will say I've read some of the blogs on here and while my pain has been pretty extreme, I don't think it's been AS bad as some of you yet (knocking on wood). My dr said that she has no way of knowing how many clusters I will have to suffer but that they can change. Ive been on this cluster for 9 weeks now. In an attempt to end it they gave me imitrex injections (not tolerated well but at least I know what to expect), verapamil, seroquel, prednisone, and melatonin. Seems pretty standard from what I have read. Based on my low tolerance for the imitrex though, they said I MIGHT have to be admitted for a few days for treatments with I THINK DHE... has anyone tried this??

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jmag

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Re: Hey- Newly Diagnosed and New to group!
Reply #1 - Apr 11^th, 2012 at 10:57pm

Hey Brooke,

DHE, I've been on it. It worked once in the hospital for me. Gave me relief for a couple of days. Second time in the hospital it didn't work at all. Then I tried it for a week while I was on lithium. It was, to say the least, less than successful.

DHE is a vasoconstrictor like Imitrex. DHE is an ergot based medication.

There are going to be people on here that are more knowledgeable than I am that will be contacting you. One thing most of us seem to agree on, is that you can possibly find something to lessen the pain and make it manageable. Some have actually become pain free. So, there is hope.

Hope it breaks the cycle for you or at least gives you some relief!!!!!

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wimsey1

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Re: Hey- Newly Diagnosed and New to group!
Reply #2 - Apr 12^th, 2012 at 8:08am

Yes, I was hospitalized and given DHE IV, along with a bunch of other stuff, and it did break the cycle for a couple of weeks. I've had good luck using a DHE spray called Migranal. Not as fast as imitrex injections, but tends to keep the beast at bay longer. Your on the right track with the meds, but you don't mention dose levels. I take 640mg/day verapamil and have just added lithium to the mix. The best abortive is high flow O2-and by high flow I mean 25lpm+ with a good nonrebreather mask. Coupled with both imitrex and migranal I have not been hit with anything I couldn't manage for the past three years. Keep writing and let us know how you're doing. God bless. lance

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RichardN

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Re: Hey- Newly Diagnosed and New to group!
Reply #3 - Apr 12^th, 2012 at 4:11pm

Hello and Welcome to Clusterville

ABSOLUTELY get a script for 02, 15-25 lpm regulator (under $30 on ebay), an O2ptimask (links on the site) with the big green 3 litre bag, disgned for clusterheads to give us 100% 02 at a rate high enough to abort the attack.

Re the Imitrex and, "I thought I was having a heart attack". Imitrex is a major vaso-constrictor and if you have artery blockage or high cholesterol (as I do), it can be very (as in heart attack) dangerous. So trex was out for me . . . 02 has been my only abortive for ten years and is a miracle for most of us. Even those that do have scripts for Imitrex abort most attacks with 02 and save the trex for attacks the 02 doesn't reach or for those times when having an 02 tank handy is not practical.

Wish to also report that I haven't had an attack since mid-November (after eleven years chronic) as a result of the D3 regimen you can read about on Batch's thread, "123 days PF and counting . .." on the Meds, Therapies board.

Keep reading . . . keep asking.

Be Safe, PFDANs

Richard

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I can live with the beast as long as I don't have to "dance" with the bastard.

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Brooke

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Re: Hey- Newly Diagnosed and New to group!
Reply #4 - Apr 12^th, 2012 at 4:46pm

Dealing with the beast now at work... flipping out thinking im going to rip my eye out! I am scared to give the imitrex though. 1. I haven't had to do it to myself yet and 2. I had such a strong reaction last time. I dont have high cholesterol or anything liek that just felt like I had a TON of bricks on my chest. was told to try alieve 15 min before injecting so hoping for thes best.. update later. Also- they did give me o2 just hasnt arrived yet Sad

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RichardN

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Re: Hey- Newly Diagnosed and New to group!
Reply #5 - Apr 12^th, 2012 at 6:24pm

GREAT that you have 02 on the way. As soon as you get it, let us know how high your regulator goes. If they provide and 8 lpm regulator and a nasal canula (the nose thingy) . . . pm me and I can give you a trick that may help til you get the right set-up.

You need a regulator that goes to at least 15 lpm, and preferably 25 lpm . . . both can be found on ebay and will look like the 8 lpm reg. If they send you a non-rebreather mask (the one with the bag), it will be a 1 litre bag . . . until you can get an O2ptimask (designed for clusterheads), with the big green 3-litre bag, tape the exhale ports on both sides of the mask. Hold tight to your face when you inhale and crack the bottom of the mask slightly for the exhales . . . this will insure 100% 02. That mask will come with a green strap, good for using while driving and for hanging on your tank, BUT NEVER EVER use at night. It's way too easy, especially if you're exhausted, to abort the attack, lay back down still breathing the 02 to finish him off . . . and fall asleep. . . . to be wakened strangling for air when the tank runs out (remember you've taped the exhale ports). Better to always hold the mask, and if you fall asleep, you'll just wake in the morning (or next hit) with an empty tank.

Be Safe, PFDANs

Richard

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I can live with the beast as long as I don't have to "dance" with the bastard.

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RichardN CH.com Hall of Famer Offline Posts: 963 x1\|Crossville\|USA,Tn Gender:	Re: Hey- Newly Diagnosed and New to group! Reply #6 - Apr 12^th, 2012 at 6:28pm Just re-read my previous post. Need to clarify. You only need to tape the exhale ports on the standard 1 litre bag non-rebreather mask. The O2ptimask doesn't have them. Richard
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wimsey1

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Re: Hey- Newly Diagnosed and New to group!
Reply #7 - Apr 16^th, 2012 at 7:57am

Brooke, the feeling of weight on your chest, or various other descriptions of imitrex getting to work, are fairly common. I found the unpleasant feelings are much reduced by using the imitrex tip at the left. Or, as more recently, using a syringe I fill myself from a 6mg (.5ml) vial, and using only 3mg (.25ml) of imitrex. Same abort but without the nasty feelings. Plus, it doubles the use of the standard application of 6mg. Could be tricky, though, if you're skittish about self-injecting. Still, give it some thought. God bless. lance

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Brooke CH.com Junior Offline :) Posts: 27	Re: Hey- Newly Diagnosed and New to group! Reply #8 - Apr 16^th, 2012 at 1:57pm I'm actually in DHE right now. Figure I have plenty of time to reply... I did the imitrex tip and it helped a lot did 2mg instead of 6- less side effects! I'll post later and update how the dhe is helping, thanks for the support!
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ariel CH.com Junior Offline I Love CH.com! Posts: 83 Long Island new York Gender:	Re: Hey- Newly Diagnosed and New to group! Reply #9 - Apr 16^th, 2012 at 6:35pm Are you using dhe & imitrex at the same time? I may be wrong, so I hope someone else will clarify, but I thought it was a big no no to use them both within 24 hours of each other? Hope you get PF soon.
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Brooke CH.com Junior Offline :) Posts: 27	Re: Hey- Newly Diagnosed and New to group! Reply #10 - Apr 16^th, 2012 at 7:04pm No they made me go without imitrex for 2 days first. I am being treated at cleveland clinic. So I had to go there for 5 hours today to start the DHE and now I finish it at home for 5-7 days. So far its working, but we'll see if it keeps it away.
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ariel CH.com Junior Offline I Love CH.com! Posts: 83 Long Island new York Gender:	Re: Hey- Newly Diagnosed and New to group! Reply #11 - Apr 16^th, 2012 at 7:53pm Oh, I see. That would be pretty scary to me. What do they do if you get hit with a bad headache while on the DHE? What do they do if o2 doesn't help? Thats why I'm afraid of trying that. So glad it's working for you so far
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Brooke

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Re: Hey- Newly Diagnosed and New to group!
Reply #12 - Apr 18^th, 2012 at 9:31pm

If you get a bad headache while on DHE they give you o2... the o2 really does help. DHE is weird though they had me there for about 5 hours while they tried the DHE and figured out what the right dose would be. They then sent me home to continue my own injections of it every 8 hours for a week. The normal dosage is 1ML but I tolerate 1/4 ML better. The side effects can be a lot.

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RichardN CH.com Hall of Famer Offline Posts: 963 x1\|Crossville\|USA,Tn Gender:	Re: Hey- Newly Diagnosed and New to group! Reply #13 - Apr 19^th, 2012 at 9:56pm Have you gotten your 02 yet? Richard
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Brooke

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Re: Hey- Newly Diagnosed and New to group!
Reply #14 - Apr 19^th, 2012 at 10:28pm

No the company bringing me my own o2 has really dropped the ball.. I will say though the DHE is really working...haven't had any headaches in 3 days... not for someone who doesn't like needles since its a semi long needle you have to do yourself each day, but it has really worked for me. I think the verapamil is also finally kicking in.

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Hey- Newly Diagnosed and New to group! Reply #15 - Apr 20^th, 2012 at 8:41am That's great news, Brooke! But...don't let up on the O2. This could have broken your cycle but beware the beast's comeback tenacity. Blessings. lance
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