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        Cluster Headache Help and Support >> Cluster Headache Specific >> What can I do, What can I do?
        
(Message started by: LindsayLoo on Aug 26^th, 2007, 1:44am)

Title: What can I do, What can I do?
Post by LindsayLoo on Aug 26^th, 2007, 1:44am

I've been having an awful day today, I would consider it one of my worst yet. The last time it hit this hard I ended up on the DHE.

I just got over my "before bed" attack and I am waiting one my next one, about 2-3 am (10:30p now), that one is indescribeable. They have been getting worse over the past few nights.

My problem, I ran out of O2 yesterday.

Dependable was suppossed to bring it yesterday but didn't. I had welder's O2 but that ran out this afternoon so now I am freaking out. I'm crying as I write this because I think I hit my "I cant do this anymore" point. Hopefully I am stronger than what I think I am.

I've been drinking water, red bull, taking my verapamil, depakote and increased my amitriptyline to see if I could sleep. I have lidocaine jelly, Imitrex spray, Replax tablets and Dilaudid and Oxy pills. I actually just took my Dilaudid and a Ativan because the shadows are that bad and I am that anxious. None of the stuff I have though has been working the last 2 nights.

Is there ANYTHING else I can do?? Anything at all??

I am desperate right about now and am very tempted to go to the ER around my time but I am afraid they will admit me for DHE and that isn't an option because my DH is in his final week of the Police Academy and CANNOT miss to watch the kids and my parents are on Vac. Plus I don't want to have to lug my babies out during a monsoon so dh can take me to the ER.

Thanks!
A very anxious Lindz

Title: Re: What can I do, What can I do?
Post by Lotus on Aug 26^th, 2007, 2:00am

Hi Lindsay

Sorry to hear you are doing it tough. I pray that things will ease off for you really soon.

Have you tried Zyprexa ? When will you get some more oxygen? How high is your Verapamil dosage now? Why arent you using Imitrex injection? The nasal spray works fairly well but its still inferior compared to the injections. Can you go to your GP to see if you can get some Zyprexa to try or to get some Imitrex injections?
Have you tried applying wet ice on your neck, head and face as soon as a hit is looming?

Please be careful about taking Ativan and Dilaudid for shadows, I havent heard that they work for shadows nor do they prevent a shadow from becoming a full blow CH hit. Taking too much pain killers can actually cause rebound headaches.

Hang tough, this too shall pass.

Hugs and prayers.

Annette

Title: Re: What can I do, What can I do?
Post by nani on Aug 26^th, 2007, 2:01am

Sorry you're having such a hard time, Lindz.

First, may I suggest staying off the narcs. Sometimes, they make things worse. (they are a trigger for me)

Second, you need to start breathing... the anxiety just adds to the horror.

Do you use ice? Sometimes sticking your face in front of a cold flow (like the car AC) helps me.
If you prefer heat, getting into a hot shower with your head under the running water helps.

Have you tried melatonin for night time attacks? It's cheap and OTC. Maybe hubby can run out and get you some?

Call the O2 place first thing in the morning...hopefully they'll get on it right away.

Remember...it's hard, but you'll be OK.

pf wishes, nani

Title: Re: What can I do, What can I do?
Post by LindsayLoo on Aug 26^th, 2007, 2:09am

Hi Annette,

Never heard of Zyprexa aside from here. My verapamil is 240mg. I tried calling my neuro yesterday and can't get in till the 10th and that appointment was a cancellation. I don't know why I don't have the injections, that is a question I plan to ask. I had a really REALLY hard time getting the O2 since the neurology clinic doesn't use it for headaches <rolls eyes> I will get more o2 Monday (I guess dependable had no "refills" on my o2 so they need to contact the doc <rolls eyes again>

I have tried the wet washclothes and ice packs, and nothing, even sat in front of the A.C. full force in my car.

I only took the ativan for my anxiety not the shadows and I seldomly take the dilaudid but I figured it was worth a shot. It does, at times, give me nasty rebounds.

Thanks,
Lindz

Title: Re: What can I do, What can I do?
Post by LindsayLoo on Aug 26^th, 2007, 2:12am

on 08/26/07 at 02:01:49, nani wrote:

.

Remember...it's hard, but you'll be OK.

pf wishes, nani

I am trying SO HARD to remember this.

Title: Re: What can I do, What can I do?
Post by nani on Aug 26^th, 2007, 2:14am

Can you get melatonin tonight? It may help you avoid the 2AM hit.

Title: Re: What can I do, What can I do?
Post by LindsayLoo on Aug 26^th, 2007, 2:27am

Yeah, Jon (dh) said he would run and get it, as he still sits on his ass watching MythBusters (he has ALOT of compassion I tell you)

Do you think it would even work seeing as I have already taken 75mg of Amitriptyline and Ativan, both of which have sedative properties??

Lindz

Title: Re: What can I do, What can I do?
Post by nani on Aug 26^th, 2007, 2:32am

My (very limited) understanding of this is that we lack it. When we take it it helps us avoid REM sleep, which is most likely our night trigger.
Or, something like that.

I know it's frustrating... but other people just don't get it, you know. That's why we all love this place...we get it. Hang in there.

Title: Re: What can I do, What can I do?
Post by vietvet2tours on Aug 26^th, 2007, 4:24am

on 08/25/07 at 03:07:01, LindsayLoo wrote:

Sherry, I use lidocaine jelly, I shoot it into my nose with a little plastic medicine syringe.

It helps but it's very messy, gooey and really just a pain in my arse but it's useful as one of my lines of defense for my minor attacks.

PFD,
Lindz

Title: Re: What can I do, What can I do?
Post by Lotus on Aug 26^th, 2007, 5:14am

Melatonin is a hormone but it also acts as a neurotransmiter. It has a very important role in our sleep cycle and REM sleep. During a CH cycle, the level of Melatonin is often found to be low and many people find that when taking Melatonin supplement, they sleep better and have less night hits. However, it doesnt work for all, just like everything else, but its worth a try.

The problem is, it takes time for it to build up the effect. My husband had to take it continously for 2 weeks before the night hits started to reduce. Therefore if you start it tonight hoping that it will block your early morning hit, you may be disappointed.

Apart from effective abortives such as oxygen, imitrex, zyprexa or ergotamine, and to some degree Red Bull ..... everything else works more as a preventive and can take days or weeks to kick in. It would be best if you can get to your GP tomorrow and ask ( demand ) for Imitrex injections and some samples of Zyprexa to try and to get more oxygen as soon as possible.

It is also important to not panic ( I know its easier said than done ). The more you worry about when and how bad the next hit is going to be, the less you will be able to cope with it. Try to concentrate on going about as normal with your life and with your family life, take the hits as they come. They will pass and you will be OK.

You can also chat to many of us in the chatroom. There will be many good people there to give you extra support to get you through this hard time.

Praying for you and yours.

Annette

Title: Re: What can I do, What can I do? O2
Post by purpleydog on Aug 26^th, 2007, 6:19am

Lindsay,
Call your doc to get the O2 refill. Get ahold of the answering service for your neuro, and have someone call you back. Have the phone # for the O2 place handy, and ask them to call it in. Then call the O2 place, and have them deliver it right away. Call your neuro Monday morning, and ask to have them call in a script for Imitrex injections. Ask for vials, and syringes, that way, you can split the shots.

Right now, just try not to worry too much. You already know what happens, and we know there is nothing you can do but ride it out. Try to go with it, try not to fight it too much, it won't last. If you can relax, and try hard to keep your mind on something else, besides your head, it may be easier. Try the nasal trex as soon as you know it's coming on, maybe that will help.

Normally, narcotics won't kill CH, but some here have said it has taken the edge off. If you have a script to use it, you may try it to see if it helps do that... take the edge off. Taking it for one night probably won't give you a rebound.

I know this is late, but you CAN do it. I've been right where you are now, and thought the exact same thing. But I did it. And you can too. Hang in there.

Also, when you call your doc, ask for a prednisone taper, if you can take it. It does stop some of these monsters in their tracks, it works for me that way. And Lindsay, don't be afraid to call your doc in the night. This is an emergency, and that's what he's there for. If you go to the ER, they will call him. If you can get him to call in a script tonight, get it, if there is a 24 hour pharmacy open.

If you can't get him to call anything in, go to the ER tomorrow, Sunday, and explain about the hits, and ask for a pred taper. Then you don't have to be in there with DHE. I hope this works. We are all here for you, and I'm pulling like hell for you. Hang in there. [smiley=hug.gif]

Title: Re: What can I do, What can I do?
Post by Karla on Aug 26^th, 2007, 7:50am

Your verapamil dose is kind of low. My doc raised me to 960mg. If that low dose isn't working for you, you may want to ask your dr to up the dose.

Title: Re: What can I do, What can I do?
Post by 2late on Aug 26^th, 2007, 9:27am

imitrex spray takes way to long to work, get the imitrex injector pen it works for more people than not....good luck and hang in ther!

Title: Re: What can I do, What can I do?
Post by sandie99 on Aug 26^th, 2007, 10:37am

Lindsay,

I'm sorry that you're hurting badly now... [smiley=hug.gif]

One thing I've found useful is ginger ale. It works mostly for the shadows, but it's worth a try. I drink it with ice, because cold helps me.

Lots of PF wishes & [smiley=hug.gif]
Sanna

Title: Re: What can I do, What can I do?
Post by nani on Aug 26^th, 2007, 11:05am

on 08/26/07 at 05:14:34, Lotus wrote:

The problem is, it takes time for it to build up the effect. My husband had to take it continously for 2 weeks before the night hits started to reduce.

Actually, that's not the case for me. It works the night I start taking it.

Lindz...I hope you have a better day.

Title: Re: What can I do, What can I do?
Post by thomas on Aug 27^th, 2007, 1:45pm

on 08/26/07 at 05:14:34, Lotus wrote:

The problem is, it takes time for it to build up the effect.

It doesn't "build up" it's gone shortly after you wake up, it gets changed to serotonin. If it doesn't work the first couple of nights, you have to play with the doseage amount and the time that you take it, but generally you will notice a change immediately.

Title: Re: What can I do, What can I do?
Post by horsegirl on Aug 27^th, 2007, 4:05pm

maybe you already had a pred taper , if not that helps immensly to give you a good break.

Title: Re: What can I do, What can I do?
Post by Kevin_M on Aug 28^th, 2007, 7:13am

on 08/26/07 at 01:44:58, LindsayLoo wrote:

I am waiting one my next one, about 2-3 am (10:30p now), that one is indescribeable.

My problem, I ran out of O2 yesterday.

I have lidocaine jelly, Imitrex spray,

Lindz, in this situation, if you have used the Imitrex spray and it has worked, that would be the first thing I'd reach for, early, when you first feel it coming. (likewise to Lotus' commenting)
Despite the time factor, where oxygen may take 8-10 minutes to start relieving pain, this trex can get out to 15 minutes. If it's well underway, quite longer. Of course very painful, but it should get rid of a hit, much better than suffering through it a minute further.
When it was all I had, it was all I used back when, for many years. It takes faith and enduring but the feeling of a CH diminishing and leaving is like no other. Having something you know will work in time relieves a lot of awful feelings on a temporary basis.

Quote:

I had a really REALLY hard time getting the O2 since the neurology clinic doesn't use it for headaches

Wow. Same with my doc and first neurologist. A designated headache clinic neuro scripted oxygen though without hesitation, and a theraputic level of verapamil, with feedback weekly on progress.

Quote:

(I guess dependable had no "refills" on my o2 so they need to contact the doc

Best if script reads something like "as needed", meaning whenever and however long a time.

Consider a doctor's care who may be more in tune.