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Topic: Thinking about going inpatient for the first time. (Read 1187 times) |
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E-Double
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Thinking about going inpatient for the first time.
« on: Jun 27th, 2007, 1:43pm » |
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I don't know what to do!!!!
I need a break so badly but have never gone to hospital with exception to begging to be knocked out.
NECH gave me 2 names in NY not far from me.
one being Noah Rosen ( he was @ dalcon) who is now at the hospital system that I work for
the second is Ira Turner who is also apart of the health care system.
Both want me to come in for a consultation.
I feel that I do not need a consult but a CH knowledgeable doctor who is local that can follow whatever regimen Dr. Tepper suggests (sheftell is out on medical leave)
Any suggestions.?
Scared of DHE drip but may be needed but what if done wrong? then I'm in the shitter.
Anyway, thanks for indulging my whine.
There's a first for everything 
Eric
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LeLimey
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Re: Thinking about going inpatient for the first t
« Reply #1 on: Jun 27th, 2007, 1:55pm » |
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Eric hon - its worth a try and with Noahs background I wouldn't hesitate to let him give me DHE if I needed it. I know he was incredibly highly thought of at Jefferson.
You've got Hannah and Jo - do you really want to waste a minute you could spend with them suffering when something could help?
The DHE isn't like surgery and I'm sure Unsolved and many others can give you lots of tips.
I don't know if you have to have the drip first or not but I know BarbD for instance has had injections she can administer herself so that's someone else to talk to.
In the meantime - make the appointment. You owe it to yourself 
We're with you all the way - whatever you choose and wherever we're going!
lots of love
Helen x
edited cos I can't type today!
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| « Last Edit: Jun 27th, 2007, 1:57pm by LeLimey » |
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E-Double
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Re: Thinking about going inpatient for the first t
« Reply #2 on: Jun 27th, 2007, 1:58pm » |
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I have an appointment on Friday with Noah but was hoping to be admitted now.
I got whacked in a meeting and then the girl I share an office with got to witness the Oxygen tango.
Feelin like a freak.
Been a while.
Thanks 
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lionsound
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Re: Thinking about going inpatient for the first t
« Reply #3 on: Jun 27th, 2007, 2:06pm » |
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on Jun 27th, 2007, 1:58pm, E-Double wrote:
you're only as freaky as the rest of us.
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Brew
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Re: Thinking about going inpatient for the first t
« Reply #4 on: Jun 27th, 2007, 2:32pm » |
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Eric - I've had the IV-DHE treatment twice. For me it wasn't a drip, it was a push. If you do it, don't let some careless nurse drive it all in at once. It has to be done over about 10 min.
The relief was almost immediate and most welcome. The only way I've ever had it was 1mg push every 8 hours, 9 treatments total. So you'll be there for three days. Bring a book.
And by the way, you're only a freak if you don't try whatever you can to rid yourself of the pain and go back to being there for your wife and daughter.
Bill
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Re: Thinking about going inpatient for the first t
« Reply #5 on: Jun 27th, 2007, 2:48pm » |
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There's nothing wrong with needing a break Eric ! The docs should be able to at least give you a temporary break. Tell them you need it ! After all, we're talking about clusters here ! 
DHE always works for me (temporarly). DHE IV dosing shedules vary, but should not exceed 1mg per dose, 2mg per day and 6mg per week. I usually get 0.5mg every 6 hours until the max 6mg is reached. Strongly recommend anti nasua medication along with DHE. Your blood pressure will have to be monitored before and after dosing. Should not take if bottom number is 90+ or if top number is 140+. Given like this, DHE is a very powerful vasoconstrictor. Watch for whitening of the fingers and/or toes or pain in the knees as this is a sign of the blood circulation being affected, discontinue use. Most common side effect is nasua and elevated blood pressure
A healthy dose of Solu Medrol (250 - 500mg, up to 1000mg IV) seems to be very effective also. Must be done sparingly though as this is a steroid.
Goodluck & PF Wishes E !!
UNsolved
EDITED TO ADD:
PS. Bill said that he did a total of 9mg, and I don't doubt that at all (I've done it). Many neuro's do it differently for some reason ... don't know why. But ... 9mg is a pretty hefty dose and you should be watching for side effects. Some people (myself included) have given themselves DHE IM injections ... but you really can't do this everyday. (It would be hard on your blood vessels and circulation). Believe me, if I could do just 2mg everyday, I'd be fixed up !! But ... This is another drug that you CAN NOT overdo !!
Goodluck
Unsolved
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| « Last Edit: Jun 27th, 2007, 6:03pm by unsolved1 » |
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Peppermint
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Re: Thinking about going inpatient for the first t
« Reply #6 on: Jun 27th, 2007, 11:00pm » |
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Eric... don't make me get in my car again.
I'm glad you realize that kickin' it old skool bites the big one and you're looking for the right avenue. These folks gave you some great feedback, and ultimately you will need to trust the doc you see.
People have spoken about Sheftell and Tepper in positive ways many times here. Also, Noah was not only at Dalcon, but he witnessed you getting hit, remember? I think any one of these good doctors will steer you in the right direction. JUST don't forget to communicate, that is key.
Noah, is right near you. If you can get to him, and/or Dr. Tepper, either one, have them get in touch with each other if possible.
Keep us updated ya hear?
Kajingles,
Patty
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chewy
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Re: Thinking about going inpatient for the first t
« Reply #7 on: Jun 27th, 2007, 11:12pm » |
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I went inpatient after a nine month relentless cycle. 6-10 hits day and night, every day for 9 months. Nothing was working.
My usual was 2 cycles a year for about 3 months each until the monster 9 month cycle hit.
2 days DHE IV drip and something, I forget what, that would get me some sleep while I was there.
That was about 5 years ago and I have been cycle free ever since.
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MR_FLOOR
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Re: Thinking about going inpatient for the first t
« Reply #8 on: Jun 27th, 2007, 11:12pm » |
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Eric,
Have you ever tried histamine desensitization if not it's worth a try at least ask about it.It totally worked for me twice the first time I had 8 years of almost total relief.It don't work for all but it works for me.Good luck in whatever you end up doing,I hope it works.
Dave
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purpleydog
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Re: Thinking about going inpatient for the first t
« Reply #9 on: Jun 28th, 2007, 1:23am » |
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Go for it, Eric. As strong as we are, as clusterheads, sometimes too much is just too much. If you go see Rosen, he'll probably admit you, and you can get a break. We've got to do what we've got to do, and sanity is important.
Try not to worry too much, when/ if you're admitted. Get that break, we'll be here for you now, during and after. Keep us updated.
Love ya!
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envirodefender
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Re: Thinking about going inpatient for the first t
« Reply #10 on: Jun 28th, 2007, 1:29am » |
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me too. the docs say thats all thats left after this cocktail. kinda freakin out. can you help me get to the chat room. cant remember how to get there
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George_J
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Re: Thinking about going inpatient for the first t
« Reply #11 on: Jun 28th, 2007, 1:33am » |
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I think you ought to do it, Eric. I know you've been handling it hardcore and medfree, but....there's only so much a person can take. When they're out of control, something's got to be done.
Hope you get the relief you need.
Best always,
George
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birdman
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Re: Thinking about going inpatient for the first t
« Reply #12 on: Jun 28th, 2007, 8:31am » |
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I applaud your ability to go medfree and admit I couldn't do it myself. But everyone needs a break every now and then. Get yourself admitted and take a rest. It could be the thing you need to break it up. Best wishes.
Tim - fellow NY'er
P.S. - If you do, after you are feeling better, let me know how it went and who you saw. My current nuero is good but not great.
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E-Double
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Re: Thinking about going inpatient for the first t
« Reply #13 on: Jun 28th, 2007, 3:11pm » |
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Thanks everyone!!!
I met w/ Dr. tepper today and went over every medicinal option as far as preventative and surgeries which are not really options for me.
He did suggest and perscribe Methergine as a preventative (which I am unsure if I even want to try) and I had 2 greater occipital nerve blocks (each side since I've been ping ponging)
We discussed going in-patient and he said he could call Roosevelt in Manhattan to see if he could get me in.
Tomorrow I am going to see Dr. Rosen and we shall se what happens.
All docs would work as a team.
I was on the verge of tears I am so run down but I am hopeful that I will be back to myself in no time and be back to the driven and positive guy that I am.
PF wishes,
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Re: Thinking about going inpatient for the first t
« Reply #14 on: Jun 28th, 2007, 3:43pm » |
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I have no advice to give, but want to remind you that we all know what you're going through; we feel your pain and want you to share our strength. Keep strong! 
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Brew
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Re: Thinking about going inpatient for the first t
« Reply #15 on: Jun 28th, 2007, 3:45pm » |
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Keep in mind this is just me, but I've done both methergine and methysergide maleate, and the methergine didn't do squat for me. Methysergide maleate (formerly known in the US as Sansert), on the other hand, is a wonder drug as far as I'm concerned.
If you were to go that route, PM me and I will fill you in on the details of what to expect. It works right away (within 48 hours), and there are some short-term side effects. Also, you'll have to have it made at a compounding pharmacy.
Good luck with your decision, bro.
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E-Double
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Re: Thinking about going inpatient for the first t
« Reply #16 on: Jun 28th, 2007, 4:05pm » |
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on Jun 28th, 2007, 3:45pm, Brewcrew wrote:Keep in mind this is just me, but I've done both methergine and methysergide maleate, and the methergine didn't do squat for me. Methysergide maleate (formerly known in the US as Sansert), on the other hand, is a wonder drug as far as I'm concerned.
If you were to go that route, PM me and I will fill you in on the details of what to expect. It works right away (within 48 hours), and there are some short-term side effects. Also, you'll have to have it made at a compounding pharmacy.
Good luck with your decision, bro.
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He did mention Sansert and that they could get it for me from Canada and how it works FAST but the side effects are what caused it to be discontinued in the US
Thanks Bill
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Brew
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Re: Thinking about going inpatient for the first t
« Reply #17 on: Jun 28th, 2007, 4:29pm » |
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on Jun 28th, 2007, 4:05pm, E-Double wrote:
He did mention Sansert and that they could get it for me from Canada and how it works FAST but the side effects are what caused it to be discontinued in the US
Thanks Bill |
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The side effects are the remote possibility of fibrosis of the kidneys, lungs, and/or heart valves. It takes a long time for that to occur (if it even does - like I said, remote), so they make you go off of it for a month after taking it for 6 months.
It's such a remote possibility, in fact, that my doc said he would be more than comfortable keeping me on it for longer. I am an otherwise healthy patient (except my gut - hey, I'm workin' on it), so no big whoop. I started up in August, 2006 and stopped in February, 2007 (about the fourth or fifth time I've taken it). And I still have about two months' worth just sitting there (read: we're going to be seeing each other in just a couple of weeks).
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Tara Ann
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Re: Thinking about going inpatient for the first t
« Reply #18 on: Jun 28th, 2007, 7:44pm » |
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Best of luck Eric. I've been inpatient a few times, at the worst you'll get some peace and quiet (yeah right not in a hospital ) Hang in there though, do what you gotta do to try and catch a break! Tons of vibes to you that you catch one super fast!!!!!
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Re: Thinking about going inpatient for the first t
« Reply #19 on: Jun 28th, 2007, 8:02pm » |
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Eric,
Whatever your decision, please know I'm sending hugs and kisses your way for PF time. Your family needs you, we need you, and it sure sounds like time for a break for one of my favorite family members.
Hugs,
Kris
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Re: Thinking about going inpatient for the first t
« Reply #20 on: Jun 28th, 2007, 9:16pm » |
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Good luck bro. I hope you find the magic pill that works for your particular cluster. I used to be on Sansert. I din't like the way it made me feel. It caused my legs to ache but it did seem to cause the number of HA's I got a day to be cut in half. It looks like you have 2 guys that are willing to work with you and that is a good thing. I have never had the DHE-IV treatment, but I think that if I were you, I would give that a try first. See you in a couple of weeks.
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Maffumatt
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Re: Thinking about going inpatient for the first t
« Reply #21 on: Jun 28th, 2007, 10:02pm » |
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Dang Eric, sorry its hitting so you so bad, do what you have to do. Be well my friend.
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Re: Thinking about going inpatient for the first t
« Reply #22 on: Jun 28th, 2007, 10:54pm » |
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I'm not so sure if you could do that drug (Sansert) and do DHE. Don't think so! Cannot mix it with Triptans either.
For a good chance at an immediate break, better do the DHE IV first. <?> Ask your docs ... you did name off some BIG names ... they'll know !
Whatever you decide to do, Goodluck E ... I hope you get a real break soon !!
PF Wishes
UNsolved
PS. Just incase .... One of the most important things to do as a patient getting DHE is to tell the nurse " ... Push it slowly !! ...". It should take at least 3 minutes to give you the shot ( in your IV line) !!
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| « Last Edit: Jun 28th, 2007, 11:00pm by unsolved1 » |
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Sean_C
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Re: Thinking about going inpatient for the first t
« Reply #23 on: Jun 29th, 2007, 10:20pm » |
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Eric I'm prayin for you to get some relief bud.
If ya need to talk you know my number.
Sean..........................................
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Re: Thinking about going inpatient for the first t
« Reply #24 on: Jun 30th, 2007, 11:28am » |
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Wishing you some much needed and long lasting relief my brother from another mother.
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