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        New Message Board Archives >> 2006 General Board Posts >> i've just about tried everything (UPDATE)
        
(Message started by: FramCire on Sep 16^th, 2006, 1:51pm)

Title: i've just about tried everything (UPDATE)
Post by FramCire on Sep 16^th, 2006, 1:51pm

I ended up with 40 of nubane and Im feeling OK. It does little for the headache but the nerve pain in my jaw is a bit better.

I was at the end of my rope too. Nothing is working (except the Zyprexa which can only be taken 1x a day) and the daytime headaches today are worse than ever.

ANyway. more prayers/vibes please. My wife has the kids and I have my head.

Title: Re: i've just about tried everything
Post by alchemy on Sep 16^th, 2006, 1:56pm

Hang in there buddy, vibes on the way

Title: Re: i've just about tried everything
Post by zwibbs/Scott on Sep 16^th, 2006, 4:00pm

I'll be praying for you big time---tonight and tomorrow !!! I really hope that you feel better.

Title: Re: i've just about tried everything
Post by nani on Sep 16^th, 2006, 5:33pm

kudzu?
I don't recall seeing that Zypexa is limited to one a day. Are you taking a low dose? I believe that both Eric and BobJohnson were taking lower doses than the psychatric dose.

Title: Re: i've just about tried everything
Post by Carl_D on Sep 16^th, 2006, 7:36pm

Big ass vibes going out to you man. Try to hang in there and fight this. Do you have o2?

Carl

Title: Re: i've just about tried everything
Post by FramCire on Sep 16^th, 2006, 7:54pm

I tried the 2.5 dose that Eric suggested but it didn't work so I went to 5mg and both times I slept a few good hours but got hit even harder in the morning.

This morning was so bad I ended up in my doctor's office getting 2 shots of newbane (20 EACH). the nurses said they were surprised I was walking but it took enough of an edge off for me to ride out the rest of the headache.

It is 6:50 and SO FAR, I haven't got anything more than a shadow. I can't use triptans tonight (used Migranal in the AM) so it is Migranal, O2 and Zyprexa only.

Carl: I have O2 but no clustermasx and it isn't doing crap for me. Plus my tank is out. My wife wants me to try sleeping with it on at 1 to try and get more O2 while i sleep thinking it might make me have a smaller hit when I awake.

Well, I sent my wife back to work so I got to get back to the kids. So far the Beast has only lurked around...... get the **** out!

Anyway, this place ROCKS. Even a guy I am praying for hard (Carl) takes the time to support me.

Sorry for the rambling, I am not thinking straight.

Title: Re: i've just about tried everything
Post by Bethany1 on Sep 16^th, 2006, 8:06pm

Damn E... big vibes headed your way. Sorry your hurtin so bad... :(

[smiley=hug.gif]
B

Title: Re: i've just about tried everything
Post by Jonny on Sep 16^th, 2006, 8:10pm

on 09/16/06 at 19:54:56, FramCire wrote:

My wife wants me to try sleeping with it on at 1 to try and get more O2 while i sleep thinking it might make me have a smaller hit when I awake..

Dont do it!!!!!

Title: Re: i've just about tried everything
Post by georgej on Sep 16^th, 2006, 10:27pm

Hold fast and kick its butt, Eric.

We've got your back. Hang in there.

Vibes on the way from Idaho, FWIW.

George

Title: Re: i've just about tried everything
Post by nani on Sep 16^th, 2006, 11:29pm

Eric, too long on a non-rebreather can be trouble, no? I think the O2 works because it's a gentle vaso-contsrictor anyway. I have to ask...have you even considered, or looked at kudzu? It's safe, legal and works very well for many. I read up on Nubain, and frankly, it looks a lot more serious than an herbal supplement. Why just take the edge off with a powerful narcotic, when there's a possibility for some real relief with a gentle herb? Just my 2 cents...
pain free wishes, nani

Title: Re: i've just about tried everything
Post by Opus on Sep 16^th, 2006, 11:42pm

on 09/16/06 at 23:29:02, nani wrote:

Eric, too long on a non-rebreather can be trouble, no? I think the O2 works because it's a gentle vaso-contsrictor anyway.

I believe O2 works because overdosing with O2 causes the arteries in the head to constrict hard to prevent brain damage.

Running a low flow of O2 won't help CH but could make and lung problems you have worse. They only use O2 constantly if you blood oxygen level is too low, and never at a full concentration like we use.

Paul

Title: Re: i've just about tried everything
Post by kayarr on Sep 17^th, 2006, 12:43am

on 09/16/06 at 20:10:43, Jonny wrote:

Dont do it!!!!!

How come? We were thinking the same thing that maybe his oxygen level goes down really far at night and that is part of the equation. (Fall cycle escalation sucks)

Title: Re: i've just about tried everything
Post by kayarr on Sep 17^th, 2006, 12:45am

on 09/16/06 at 23:42:51, Opus wrote:

Ok, just continue to read........Never mind! Thanks for the information!!!

Kimberly

Title: Re: i've just about tried everything
Post by FramCire on Sep 17^th, 2006, 12:46am

Thanks guys for the advice.

UPDATE: I drank 10 cups of coffee tonight (made a pot into a pitcher of ice coffee). Whenever a HA started, I drank some and so far (11:40pm ish) none have gone beyond shadows.

I am sure dirnking this much caffiene isn't a good thing and will hurt my chances of good sleep, but I am NOT in bigtime pain.

Anyway, I can't use 10 cups of coffee per night every night but I can use imitrex injectable tomorrow night if I need. I wont be using the Mygranal or Maxalt so I have trex available.

Thanks everyone. I hope you all are PF tonight and I hope I dream about each and every one of you (it means I would sleep alot if I dreamt about all of you).

I am somewhat worried about my health after this week. Little sleep, lots of drugs and pain. My heart has never had problems but i am worried about it. Tuesday I go in to see a Pain Management Doctor who thinks my clusters are related to neck/disk problems. Honestly, I don't buy it but they suppossedly have had success with occipital nerve blocks with CH in the past and they might try it on me.

Once I get through this time I am going to focus on losing weight and getting into shape but that's for another thread someday.

Goodnight all... I am going to bed with fingers crossed.

Title: Re: i've just about tried everything
Post by FramCire on Sep 17^th, 2006, 12:50am

on 09/16/06 at 20:10:43, Jonny wrote:

Dont do it!!!!!

Interestingly enough, this comment was enough to dissaude me. I am taking Johnnys opinion over a doctor's. taht's right I seriously am going to do what Johnny said over the Dr.

The rest of the thread didn't hurt either.

Plus I dont have any O2 now (got ot get it refilled monday).

Thanks again gang.

Title: Re: i've just about tried everything
Post by E-Double on Sep 17^th, 2006, 5:49am

on 09/16/06 at 13:51:40, FramCire wrote:

I ended up with 40 of nubane and Im feeling OK. It does little for the headache but the nerve pain in my jaw is a bit better.

I was at the end of my rope too. Nothing is working (except the Zyprexa which can only be taken 1x a day) and the daytime headaches today are worse than ever.

ANyway. more prayers/vibes please. My wife has the kids and I have my head.

Dude!!!!!!!!!!
You can take that little Zyprexa PRN as suggested to me by NECH and docs from MHNI.

If it is working then you should find no need to be taking high doses and certainly can take it more than 1x.

Good luck Eric and if it works than ABORT!

Title: Re: i've just about tried everything
Post by sandie99 on Sep 17^th, 2006, 10:22am

I'll send some more vibes & prayers your way.

PF wishes,
Sanna

Title: Re: i've just about tried everything
Post by FramCire on Sep 17^th, 2006, 8:15pm

on 09/17/06 at 05:49:03, E-Double wrote:

I am taking 5mg at a time because thew 2.5 wasn't working. I am not sure how often I can take it at 5mg but the side effects are scary.

Anyway.... good DAY today, we shall see the night.

Title: Re: i've just about tried everything
Post by chewy on Sep 17^th, 2006, 8:31pm

Hope you sleep well Bud.

Dont forget our PM conversation.

Title: Re: i've just about tried everything
Post by E-Double on Sep 17^th, 2006, 9:50pm

on 09/17/06 at 20:15:14, FramCire wrote:

I am taking 5mg at a time because thew 2.5 wasn't working. I am not sure how often I can take it at 5mg but the side effects are scary.

Anyway.... good DAY today, we shall see the night.

Eric,

Are you refering to the side effects that have been all over the news and the internet?
If so, they do not pertain to us!
We do not use this med for an extended period of time like those who use it for psychosis.
Then again [smiley=gocrazy.gif]

As for side effects my brother.......all these damn meds have side effects.
For some it is relief but for others the long term use can be quite dangerous.
That is why we are monitored.
You are blessed with a resident doc so don't worry.

you could also just give your body a break and see what happens.

None of us can tell ya what to do.
We can only give ya hugs and advice based upon our own experiences and what our docs have told us.

Good luck!

Eric

Title: Re: i've just about tried everything
Post by FramCire on Sep 17^th, 2006, 10:03pm

Eric: My wife refused to even tell me the side effects. She thought they would worry me too much. she agrees with taking it for relief and actually wanted me to take it BEFORE a headache came tonight so that maybe I wouldn't have any pain. So far, no headache yet but at first sign, Ill be taking it.

chewy: I haven't forgot. Thank you.

Everyone else: Thanks for your continued prayers/vibes/support. You all have no idea how much help you have been. *KNOCK ON WOOD* tonight has been great so far.

Title: Re: i've just about tried everything (UPDATE)
Post by FramCire on Sep 19^th, 2006, 8:01pm

Today I got an occipital nerve block and a script for lithium.

Now I know what lab mice go through.

Anyway, I am out of O2 but got more trex inj from my doctor so I should make it through the night.

Thanks for the vibes/prayers/thoughts.

Title: Re: i've just about tried everything (UPDATE)
Post by E-Double on Sep 19^th, 2006, 8:05pm

As you know I used it as an abortive.
During peak times I also used it as a preventative @ bedtime which helped when Night floggings were creeping through the melatonin.
This was rare but it was effective when needed.
Recommended by NECH

Title: Re: i've just about tried everything (UPDATE)
Post by FramCire on Sep 19^th, 2006, 9:06pm

Eric: My docs havea number of concerns about Zyprexa for me but I did use it effdfectively up until now. I am going to try the lithium and verap with O2 and Imitrex for abortives for now.

THANK YOU VERY MUCH! Without you, I don't know if I would have made it to today.