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        Cluster Headache Help and Support >> Cluster Headache Specific >> Thinking about going inpatient for the first time.
        
(Message started by: E-Double on Jun 27^th, 2007, 1:43pm)

Title: Thinking about going inpatient for the first time.
Post by E-Double on Jun 27^th, 2007, 1:43pm

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

Title: Re: Thinking about going inpatient for the first t
Post by LeLimey on Jun 27^th, 2007, 1:55pm

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 [smiley=hug.gif]

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!

Title: Re: Thinking about going inpatient for the first t
Post by E-Double on Jun 27^th, 2007, 1:58pm

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 :-*

Title: Re: Thinking about going inpatient for the first t
Post by lionsound on Jun 27^th, 2007, 2:06pm

on 06/27/07 at 13:58:45, E-Double wrote:

Feelin like a freak.

you're only as freaky as the rest of us. :-*

Title: Re: Thinking about going inpatient for the first t
Post by Brewcrew on Jun 27^th, 2007, 2:32pm

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

Title: Re: Thinking about going inpatient for the first t
Post by UN solved on Jun 27^th, 2007, 2:48pm

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

Title: Re: Thinking about going inpatient for the first t
Post by Peppermint on Jun 27^th, 2007, 11:00pm

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

Title: Re: Thinking about going inpatient for the first t
Post by chewy on Jun 27^th, 2007, 11:12pm

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.

Title: Re: Thinking about going inpatient for the first t
Post by MR_FLOOR on Jun 27^th, 2007, 11:12pm

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

Title: Re: Thinking about going inpatient for the first t
Post by purpleydog on Jun 28^th, 2007, 1:23am

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. [smiley=hug.gif]

Love ya!

Title: Re: Thinking about going inpatient for the first t
Post by envirodefender on Jun 28^th, 2007, 1:29am

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

Title: Re: Thinking about going inpatient for the first t
Post by George_J on Jun 28^th, 2007, 1:33am

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

Title: Re: Thinking about going inpatient for the first t
Post by birdman on Jun 28^th, 2007, 8:31am

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.

Title: Re: Thinking about going inpatient for the first t
Post by E-Double on Jun 28^th, 2007, 3:11pm

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

Title: Re: Thinking about going inpatient for the first t
Post by Buzz on Jun 28^th, 2007, 3:43pm

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! :-)

Title: Re: Thinking about going inpatient for the first t
Post by Brewcrew on Jun 28^th, 2007, 3:45pm

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.

Title: Re: Thinking about going inpatient for the first t
Post by E-Double on Jun 28^th, 2007, 4:05pm

on 06/28/07 at 15:45:41, Brewcrew 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

Title: Re: Thinking about going inpatient for the first t
Post by Brewcrew on Jun 28^th, 2007, 4:29pm

on 06/28/07 at 16:05:19, 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

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).

Title: Re: Thinking about going inpatient for the first t
Post by taraann on Jun 28^th, 2007, 7:44pm

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!!!!!

Title: Re: Thinking about going inpatient for the first t
Post by Kris_in_SJ on Jun 28^th, 2007, 8:02pm

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

Title: Re: Thinking about going inpatient for the first t
Post by Jimi on Jun 28^th, 2007, 9:16pm

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. [smiley=hug.gif]

Title: Re: Thinking about going inpatient for the first t
Post by Maffumatt on Jun 28^th, 2007, 10:02pm

Dang Eric, sorry its hitting so you so bad, do what you have to do. Be well my friend.

Title: Re: Thinking about going inpatient for the first t
Post by UN solved on Jun 28^th, 2007, 10:54pm

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) !!

Title: Re: Thinking about going inpatient for the first t
Post by Sean_C on Jun 29^th, 2007, 10:20pm

Eric I'm prayin for you to get some relief bud.

If ya need to talk you know my number.

Sean..........................................

Title: Re: Thinking about going inpatient for the first t
Post by Gator on Jun 30^th, 2007, 11:28am

Wishing you some much needed and long lasting relief my brother from another mother.

Title: Re: Thinking about going inpatient for the first t
Post by Shedz on Jun 30^th, 2007, 12:14pm

Do what you need to do Eric, if a trip to hospital is gonna give you some relief then its gotta be worth the trip. Don't let the beast win.
Sending hugs and vibes across the pond to ya chap [smiley=hug.gif]

Wishing you Peace and PFDAN's.

Paul.

Title: Re: Thinking about going inpatient for the first t
Post by rolo65 on Jul 1^st, 2007, 9:46pm

If you can take (do yourself) a 1" needle in the thigh, see if your doc will let you do it at home. Try to avoid the pic line (very irritating med line into your chest), if you do get a pic line do not push the DHE fast! It will burn your veins in your legs especially. That can be very painful, like your blood vessels shrink so much at once that you can not even move without extreme leg pain. This does not happen with IM injection.

A good reason to avoid the hospital is that I found it depressing to see the chemotherapy patients it the IV dept. It takes a lot of empathy just to talk to them. So if you can just slam the 1 mg in your thigh at home you will sleep for several hours and just have a sore leg for awhile. I find it much better to deal with the discomfort at home with my O2 tank, some solitude, and a warm bed. The DHE will make you feel very cold. It is important not to take any triptans within a 24 hr period prior to DHE. Your Doc will warn you about this hopefully. Read the drug info sheet that comes with the DHE ampules.

Try not to dull the needle in the ampule while extracting the DHE. For obvious reasons (a dull needle hurts more).

I found for me anyway that the DHE is hit or miss. Sometimes it works well other times it is hardly effective at all. It usually works well if I’ve had a break from it for awhile. It becomes ineffective for me after about a week of use. I have been off all meds for 6 weeks now and want to try sansert. Hopefully my doc will let me try it, the only other thing left is lithium and I don’t want to go there yet.

Best of luck! Roland.

Title: Re: Thinking about going inpatient for the first t
Post by UN solved on Jul 2^nd, 2007, 12:56am

on 07/01/07 at 21:46:37, rolo65 wrote:

see if your doc will let you do it at home. Try to avoid the pic line (very irritating med line into your chest), if you do get a pic line do not push the DHE fast!

You can do DHE IM injections at home, but the doc would never let you do DHE through an IV line at home. (Or any other drug through an IV without a nurse) And I've had about 2 dozen picc lines, and none of them were in my chest. Everyone of them were in my arms.

UNsolved

Title: Re: Thinking about going inpatient for the first t
Post by kcopelin on Jul 2^nd, 2007, 2:13am

Eric,
I've never tried the DHE drip, but I can definitely appreciate your need for a break. You've got some great docs there, and ain't it nice to get supported once in awhile? You give so much to others here. Prayers for a break in the pain, a break in the cycle and some rest.
PFDAN y'all
kathy

Title: Re: Thinking about going inpatient for the first t
Post by rolo65 on Jul 3^rd, 2007, 11:36pm

Yes, the pic line went in my arm, up my arm, and into my chest. And yes I did the regiment at home, flushed the line myself. If you are able they will (my doc anyway) let you do it at home.

Roland.

Title: Re: Thinking about going inpatient for the first t
Post by E-Double on Jul 3^rd, 2007, 11:44pm

This is going to be my first experience with this so the hospital it is.

I will be going in on Thursday.

I've been on a decadron taper and DHE spray for the past few days.

DHE seems to be preventing some but certainly not aborting.

Decadron WOW......I haven't eaten like this in ages. [smiley=laugh.gif] and the F-en heartburn eek!

Anyway thanks again and now I just have to buy a laptop tomorrow ;)

Title: Re: Thinking about going inpatient for the first t
Post by ordinary_joe on Jul 4^th, 2007, 12:29am

Hope it brings you peace. I will be thinking of you.

Title: Re: Thinking about going inpatient for the first t
Post by Gator on Jul 4^th, 2007, 12:46am

Here's hoping it breaks your cycle for good. ;)

Title: Re: Thinking about going inpatient for the first t
Post by UN solved on Jul 4^th, 2007, 2:06am

I hope you get the break that you deserve E ! I hope it lasts forever too ! Goodluck !!

Roland, I'm both amazed by what you've stated, and saddened that a doc would authorize a person to do that at home by themselves (without at least a visiting nurse to administor the drug(s)). None of my docs would consider letting a patient administor IV medications @ home themselves. Flushing an IV or picc line @ home is no big deal, but taking medications IV at home is both dangerous and irresponsible! If a person is sick enough to require IV meds --> They're sick enough to be admitted in a hospital !! I'd find a new doctor immediately !!

Goodluck

UNsolved

Title: Re: Thinking about going inpatient for the first t
Post by DennisM1045 on Jul 4^th, 2007, 7:35am

E,

Enjoy your last day of freedom. Let tomorrow be YOUR Independance Day. Good luck...

-Dennis-

Title: Re: Thinking about going inpatient for the first t
Post by Brewcrew on Jul 4^th, 2007, 9:44am

Eric,

I pray this gets you the relief you so desperately need.

Bill

Title: Re: Thinking about going inpatient for the first t
Post by Jonny on Jul 4^th, 2007, 11:38am

Whoop some ass, Eric! [smiley=bigguns.gif]

See you on the PF side, bro!!

Title: Re: Thinking about going inpatient for the first t
Post by George_J on Jul 4^th, 2007, 11:43am

Get what you need, Eric. I hope it provides you with a good, long break.

We'll be here.

Best wishes,

George

Title: Re: Thinking about going inpatient for the first t
Post by Lotus on Jul 4^th, 2007, 9:56pm

Whatever treatment you decide on Eric, I wish you the best and the longest success possible.

Sending vibes and prayers to you and your family.

Annette

Title: Re: Thinking about going inpatient for the first t
Post by Grandma_Sweet_Boy on Jul 4^th, 2007, 10:32pm

Good Luck Eric - praying for a positive outcome for you.

Carol

Title: Re: Thinking about going inpatient for the first t
Post by Sean_C on Jul 4^th, 2007, 10:40pm

Fingers & toes crossed here bud.

Sean..............................