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        New Message Board Archives >> Oct-Dec 2003 >> Need Some Hope!
        
(Message started by: Paigelle on Nov 28^th, 2003, 8:05am)

Title: Need Some Hope!
Post by Paigelle on Nov 28^th, 2003, 8:05am

I have been up since 2:00am and my neck and shoulder are still sore as hell. I finished my last prednisone on Wednesday and for Thanksgiving I got the beast back. Yes, I am mad as hell and tired. I don't know what to do. I have so much to do today and none of it is going to happen because of this damn HA.

I am going back to the Dr in an hour (3rd time in 8 days) and I am not sure what to say. I need a preventative that will work. I need to be able to get up in the morning with my 3 yr old and take care of him. What am I going to do if I am home alone with my son and one these things hits me? The Dr. has referred me to a neuro, but I can't get in for 6 weeks! Yippee!!! In 6 weeks, the beast should be gone for another year or so.

I use to just tolerate this beast and endure the 6-8 weeks it hung around until 2 yrs ago and now I want to fight with it. I want my freakin' neck to quit hurting! I want something that is going to work today. I want to go to sleep tonight without fear. I want to be in a better mood.

God bless the ones who are chronic because I am not so sure I could deal with that. I hate complaining about this, considering I am episodic. All I can think is "it will be gone in a few weeks." I hope.

Sorry for bitchin' today guys, needed to get it all out.

Title: Re: Need Some Hope!
Post by brain_cramps on Nov 28^th, 2003, 8:22am

Vent away. Sometimes it seems to help. Its not like anyone here is gonna get pissed at ya. We've all been there and know what you're going through.

I know what you mean about the long wait to see a neuro. I used to have to deal with that all of the time. The situation didn't get any better; I just haven't seen a doctor in years.

Hoping that you get some PF time soon,
grant

Title: Re: Need Some Hope!
Post by J.ten_Dam on Nov 28^th, 2003, 8:23am

no need to be Sorry for bitchin' we all do it and need to get it all out. I wish you strength and hope it soon is over. Feel free to contact me on yahoomessenger if you nead to talk.

Title: Re: Need Some Hope!
Post by mikeyd on Nov 28^th, 2003, 8:58am

Well Paigelle, I am hopeful that there will be something upcoming for us...one day. I mean it isn't an impossibility that they can figure it out...we all have something in common...what is it that is causing these things? maybe an inflamed hormone dispenser ::) A common piched nerve that is periodically agitated? Or chronically agitated in some cases?
I'm also curious to wether a PET scan would reveal anythingbefore during and/or after the CH. ANyone had one of those?
That is where they use radioactive isotopes to track where sugars are being used in the brain. Not sure, but I asked my doc about a few things yesterday. My neuro prescribed me oxygen a few years ago in combination with verapamil. Verapamil lowers BP...I'm sittin at 105/65 right now, the O₂ is supposed to saturate the tissues with oxygen and because it is a natural pain killer when you get a lot of it it seems to abort many headaches.
I was kind of surprised that the girl that deals out the oxygen bottles tells me that there are others that rent O₂ bottles from them that also get clusters :o

I also got a prescription yesterday from my doc that has pain relief for cluster H/A written on it...also told her about the site...maybe she will check it out, we're slowy being recognized out there...awareness of our disorder will get some more research done I hope.

So Paigelle, there is hope! Never give up
http://simo.xpam.de/Funny%20pictures%20by%20Lukas/never_give_up.jpg
Best wishes for PF days everyone!
Mikeyd

Title: Re: Need Some Hope!
Post by Ree on Nov 28^th, 2003, 9:27am

Paige, How did it go at the doctors... could you maybe print up some information from the site or send your doc the link to figure out some new options for you... Dave tried Pred it never worked. Now that you know that toss the idea that it will... all that drug does is leave your body with huge side effects... there is Verapamil and Neurontin among many more Topomax and Cafffergot... Dave is on Clonazepam to sleep... Do you have 02 at your house...??? Good luck honey hope you got some answers this past few days... thinking about you I cannot imagine waking up with a 3 year old with a CH... its hard enough when I have Migraine... love ree

Title: Re: Need Some Hope!
Post by stevegeebe on Nov 28^th, 2003, 10:15am

Ree,

I'm not sure if it was you who suggested Neorontin to me but that, in combination with Verapamil and Cafergot stopped my six month cycle the very day I started new meds. I also took Bellaspas at night.

Paigelle, and others who find what you are taking is not working, do not hesitate to try other meds.

If the jab's not working...try a right cross. If not that, than an uppercut. Keep fighting!

Good luck Paigelle.

Steve G

Title: Re: Need Some Hope!
Post by Prense on Nov 28^th, 2003, 10:42am

on 11/28/03 at 08:05:50, Paigelle wrote:

I want my freakin' neck to quit hurting!

I have noticed that when I use the trex injections it normally kills the HA completely, buy if I have associated neck pain (sometimes I do), that stays. Most of the time, the neck pain goes away after about 30-45 minutes or so, but I have had a couple of occasions where it lingered for hours and became quite bothersome. Anyway, someone here mentioned ibuprofen to me for the neck pain. I had given up on all OTCs a few years ago, but figured I'd give it a shot, and it worked (for the neck pain).

I don't know what you can do for a preventative. Until I found an abortive that worked, I could give a shit about preventatives. I wanted something that could give me my life back without enduring months and months of "tweaking" med combos. Finally, I found a doc that would precribe me imitrex, then I found a doc that would precribe O2 as it is supposed to be prescribed for CH. Now, I am dilligently pursuing a preventative that works. CH sucks, chronic CH sucks...abortives that work seem easier to find than preventatives. If you are just going to continue trying the "unknown" preventatives, then you really don't need to wait 6 weeks for a neuro. Your GP can prescribe all the little tasty treats for guinea pigs. You would probably just have to fill him in on what to try next and how.

Hope you find something that works!

Chris

Title: Re: Need Some Hope!
Post by Opus on Nov 28^th, 2003, 10:58am

Paigelle,
Try heat or cold for the neck and stick with what ever works. unfortunately finding the right preventative is hard for most and is a hit and miss situation, also preventatives can stop working after a few cycles and you have to change. Do you have any abortive, like o2 and imitrex? You need them for the 3 year old situation. One sufferer bought some special toys that only came out when they were hit, maybe this will help, also some easy snakes to get the toddler through the CH. Pregnazone is suppose to be used while you are waiting for your preventative to kick in. Most here have great success with Verapamil and Lithum. Hope things get a little better day by day and the doctor was able to help you a little. Don't be afraid to call back and ask for different meds.

Opus/Paul

Title: Re: Need Some Hope!
Post by ClusterChuck on Nov 28^th, 2003, 11:47am

SHIT!!!!! So sorry to hear!

I just tried to call you a few minutes ago. No answer. You must still be out running around.

You know you got my prayers and vibes heading at you. CathiP turned me on to a great OTC muscle relaxant that has helped a LOT for my back, just wish it would last longer for my back pain. It is called MOMENTUM. Try that for your neck. It might work.

Call me if you need to ...

Chuck

Title: Re: Need Some Hope!
Post by BlueMeanie on Nov 28^th, 2003, 12:06pm

After getting attacked with a cluster KIP 7 or higher, I usually always end up with neck pain. Aleve is what I take to reduce that part of it. Of course it doesn't do anything for the CH, but at least the neck pain eases a little. As far as immediate relief from the beast, Imitrex is fast relief and O2 is pretty quick. It should allow you to be able to chase that little rugrat around when he/she is climbing the walls. Make a list of all the prevents on this site to take to your Dr. You can try different combos over time.

My experience is if you get a good GP. that will allow you try whatever you want, you really don't need a NEURO. Assuming you've already FOR SURE been diagnosed as a Clusterhead 1st.

Good luck and PFDAN to ya !!!

Title: Re: Need Some Hope!
Post by Elaine on Nov 28^th, 2003, 12:27pm

Ask for a mussel relaxer! I take them when I am bad after a attack and it seems to help the soreness. The bad part is they tend to make you sleep. They do me anyway. Get some icey hot and rub on it.
Now your Three year old. Buy you some Microwave breafest only takes a couple of minutes to fiX. If he has to stay in his PJs all day won't hurt anything. Get you a Box and put toys in it or buy some vidios and keep them put up for days like this. Slid them in should keep him happy a hour or so. Time enough for you to sit and drink coffee and get yourself together.
I hope you get better so and remember they wil end and there is HOPE!

Title: Re: Need Some Hope!
Post by Patrick_A on Nov 28^th, 2003, 2:29pm

Ok, I am not a expert.

BUT, Prednisone is not a preventative. It supposedly just breaks up the cycle. Verapamil is a preventative. My Neuro put me on 60mg Prednisone and 240mg Verapamil. That stopped my cycle in its tracks, and once i tapered down off this combo, the CH was gone. Of course, i am episodic!

Patrick :)

Title: Re: Need Some Hope!
Post by Paigelle on Nov 28^th, 2003, 7:28pm

Thanks guys! Still feel like shit. I have been running around all day and had great hopes that would make me feel better. Like I answer in the "teeth pain thread", my teeth hurt and my right jaw is pretty much locked.

I attempted to go to the Dr today, because he told me if I needed to I could just walk in. Well, of course he was freakin' closed today. Just my damn luck!

Does anyone take Verapamil whose blood pressure runs kinda low? I need to know this!

Title: Re: Need Some Hope!
Post by jonny on Nov 28^th, 2003, 7:31pm

on 11/28/03 at 19:28:33, Paigelle wrote:

Does anyone take Verapamil whose blood pressure runs kinda low? I need to know this!

Verapamil is not a good choice for someone that has low B/P.

......................................jonny

Title: Re: Need Some Hope!
Post by Paigelle on Nov 28^th, 2003, 7:32pm

Thanks Jonny! That is what I was afraid of. My blood pressure was 102/64 the other day. It rarely goes much higher than that. What other preventive options od I have? I am feeling a bit lost right now.

Title: Re: Need Some Hope!
Post by stevegeebe on Nov 28^th, 2003, 7:35pm

Mine was low and it went down very little. Just make sure it's monitored.

Make sure!

Steve G

Title: Re: Need Some Hope!
Post by Prense on Nov 28^th, 2003, 7:37pm

on 11/28/03 at 19:32:43, Paigelle wrote:

Depakote, Topamax, Lithium...

There are many more

Title: Re: Need Some Hope!
Post by jonny on Nov 28^th, 2003, 7:38pm

Have you tried Lithium?

like steve says, Verap might work for you but you need to talk to your Doc about it and monitor it.

.......................................jonny

Title: Re: Need Some Hope!
Post by Paigelle on Nov 28^th, 2003, 7:52pm

I will try ask the Dr on Monday. He gave me Prozac, but that doesn't seem to float my boat. Had Elavil once, I was floating then, but didn't really help cycle. I just don't want to have one of these suckers when I am home alone with my little boy. I never worried about such things when this shit started years and years ago. Then I just worried about sleep, now I have to worry about its impact on my little guy. Thanks guys, you all are great.