Author |
Topic: Unrelenting... (Read 1200 times) |
|
Jim R
New Board Hall of Famer
Always question authority....
Gender: 
Posts: 603
|
 |
Unrelenting...
« on: Aug 26th, 2002, 6:19am » |
 Quote  Modify
|
a new high point or low point in my CH history. Ended up in the ER yet again last night with the classic KIP 10. I pounded my head on the wall of the examining room, tears streaming down one side, eye half shut and bloodshot, uncontrollable moaning/crying. My 25 year old son who took me felt so helpless..., said he had never seen anything like it. The pain was almost unendurable...this was literally the worst CH of my life and to top it all off, I had uncontrollable nausea and vomiting with it. I think it has to be the lithium - I'm stopping it today (not helping with CH anyway) and calling the neuro for an alternative. In the ER got another dose of demerol/phenergan and even another whoping shot like this left me with residual CH (maybe a 4) so gave me Percocet for it. I HAVE GOT TO FIND A SOLUTION OR AT THIS RATE I WILL BE A NARCOTIC ADDICT IN NO TIME!
Thanks for letting me vent. I am wiped out and completely discouraged. I can see why Clusterheads so often think of the permanent solution - I'm not - but I can see why.
I hope you all are faring much better and I wish you all the PFDAN's that keep eluding me...
Jim R
|
|
 IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
Banana_Man
Guest
|
Hi Jim,
Don't know if I can say anything to make you feel better but I really feel for you.
I think it always scary when you have a headache that is worse than ever before because you didn't think it could get any worse!!
It sounds as though last night has taken alot out of you and I hope you feel more positive soon.
Its frustrating when all people can do for you is offer words of sympathy but I will be wishing for PFDAN's for you and everyone else out there...
Paddy
|
|
IP Logged |
|
|
|
nancyc
New Board Old Timer
Friends don't let friends post drunk on mbs......
Gender: 
Posts: 384
|
|
Re: Unrelenting...
« Reply #2 on: Aug 26th, 2002, 8:13am » |
Quote Modify
|
It feels so helpless when you see one of your buds getting hit and there is nothing you can do to stop it for him...know that i care, bro...that you are in my prayers ..and that one day the beast will leave again...until a cure is found, this is sometimes all we can hang onto...and DO ASK the neuro about switching your blood pressure med to verapamil ....love you much,  nancyc
|
|
IP Logged |
|
|
|
tlc_39_98
Guest
|
usually when my clusters hit a 10 it means i'm coming to the end of my cycle...hope its coming to a end for u
jerry c
|
|
IP Logged |
|
|
|
Jim R
New Board Hall of Famer
Always question authority....
Gender:
Posts: 603
|
|
Re: Unrelenting...
« Reply #4 on: Aug 26th, 2002, 9:31am » |
Quote Modify
|
Tic,
That certainly would be NICE, but not much chance unfortunately, as it only started a month ago and my cycles run about 6 months. I certainly thank you and the other repliers for your good thoughts and wishes and I'm wishing you all PFDAN's. Jim R
|
|
IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
Mastifflvr28
CH.com Alumnus
New Board Hall of Famer
Freddie's eyes
Gender:
Posts: 3458
|
|
Re: Unrelenting...
« Reply #5 on: Aug 26th, 2002, 12:18pm » |
Quote Modify
|
awww Jim,
Your posts just KILL me.
I'm sorry.
I can't remember if you can take or have tried the
imitrex injections??
And oxygen? Tried that?
Sorry, can't keep track of what everyone has done, not done, can do, can't do, blah blah
Mast
|
|
IP Logged |
Mastifflvr28 (aka Michelle A.)
Be part of the solution
http://www.ouch-us.org
OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
|
|
|
Jim R
New Board Hall of Famer
Always question authority....
Gender:
Posts: 603
|
|
Re: Unrelenting...
« Reply #6 on: Aug 26th, 2002, 12:43pm » |
Quote Modify
|
Good news, I think: doc told me to stop lithium (already done by me), stop my blood pressure med Diovan, and double my verapamil dosage to 480 mgs./day. Also to take two Percocets in an effort to avoid the ER. If all this doesn't work, the next step is antiseizure meds. I'm crossing my fingers!
Jim R
|
|
IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
The mad viking
CH.com Alumnus
New Board Hall of Famer
Always Look on The Bright Side of Life
 
Gender:
Posts: 3135
|
|
Re: Unrelenting...
« Reply #7 on: Aug 26th, 2002, 12:45pm » |
Quote Modify
|
Hi There
Welcome to Clusterville.
Here you will find almost everything you want to know.A lot of friends that really are dedicated to help a fellow clusterhead.Hope you will find what you are looking for.
I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway
Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily
This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway
Svenn
|
|
IP Logged |
Always Look on The Bright Side of Life
|
|
|
paul_b
New Board Old Timer
I love YaBB 1G - SP1!
Posts: 371
|
|
Re: Unrelenting...
« Reply #8 on: Aug 26th, 2002, 1:47pm » |
Quote Modify
|
Sending you my best calming vibes. Finding the right med combo for you seems difficult. While thats unfolding, you can address the anxiety the comes with the onset of attacks. Some take the aggressive "I'm going to fight you, you son-of-a-bitch, approach; others go into the out of body existential approach. If the latter appeals to you, check out the archives. Before many med alternatives were available, many of our brothers and sisters sought this alternative with some success. Hang in there, I'm with you.
|
|
IP Logged |
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
Gender:
Posts: 14968
|
|
Re: Unrelenting...
« Reply #9 on: Aug 26th, 2002, 1:58pm » |
Quote Modify
|
Ya never get a break.
Jim, I know you're tired of this thing but I know it works. I have a half dozen letters that say so. It surely did for me, and during my worst cycles as well. Someone here please tell me they have had some success. It drives nuts...Anyway, you've got nothing to lose. I know it seems impossible during an attack but it killed mine in just a few minutes. It's too late to ask Dr. Wright where he got this thing but I'd kill to know how he learned this. Give it a shot.
Dr. Wright's Circulatory Feedback
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been very helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time for this to take hold but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. I like to keep at it a few minutes longer than seems necessary to insure success.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
echo
CH.com Alumnus
New Board Hall of Famer
Chronic and still alive --- I Win!
Gender:
Posts: 4214
|
|
Re: Unrelenting...
« Reply #10 on: Aug 26th, 2002, 3:27pm » |
Quote Modify
|
Sorry to read your getting hit so hard Jim. Wish I could do more for you than keyboard support. Hope the beast is on his way out the door.
Hang in there. It is so easy to get addicted to the narcotics.
|
|
IP Logged |
"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
|
|
|
Jim R
New Board Hall of Famer
Always question authority....
Gender:
Posts: 603
|
|
Re: Unrelenting...
« Reply #11 on: Aug 26th, 2002, 3:58pm » |
Quote Modify
|
Thank you everyone. Charlie - I will give it a try - a few tries. Yes, I can imagine it is very difficult to focus that much through the pain, but practice can help achieve success. Thanks again to you all and wishing you all BEST life has to offer.
Jim R
|
|
IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
Drk^Angel
Guest
|
Sorry to hear about the troubles you're facing with the beast. I hope the increased verapamil will work for you. If not, hopefully a suitable treatment will be right around the corner. You are in my thoughts and wishes. Good luck!
PFDAN...................... Drk^Angel
|
|
IP Logged |
|
|
|
Jim R
New Board Hall of Famer
Always question authority....
Gender:
Posts: 603
|
|
Re: Unrelenting...
« Reply #13 on: Aug 26th, 2002, 5:00pm » |
Quote Modify
|
My neuro just phoned in a scrip for Topamax, an anti-seizure med. I guess he is starting me out on a high dose. In one day I've had my whole medicine regime turned upsidedown and I sure hope it's for the better... My sincerest thanks to all of you here on the MB and PFDAN's to us all. - Jim R
|
|
IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
Opus
New Board Hall of Famer
(Insert witty comment here)
Gender:
Posts: 2509
|
|
Re: Unrelenting...
« Reply #14 on: Aug 26th, 2002, 5:29pm » |
Quote Modify
|
Jim, Try to keep away from narcotics. I for one know they can make a CH worse. My first 10 sent me to the ER becouse I took a codeine. It made a 10 into a 10 1/2. Fortuatly the ambulance squad put a o2 mask on and saved me a ride in pain. I had a Imitrex shot once while in a 10 and it was reduced to a 5. Hope this helps
|
|
IP Logged |
Zed-Zed-nine plural-Zed alpha,
There is no place like home.
|
|
|
ShariRae
New Board Hall of Famer
Gender:
Posts: 927
|
|
Re: Unrelenting...
« Reply #15 on: Aug 26th, 2002, 6:44pm » |
Quote Modify
|
aww.. hon.. I know this is tough..and it is hard to sit here & read how bad it is & know there is nothing I can do to help. I am so hopin the meds change will do the trick for you. Please hang in there till you find what works for you..and know we are just a click away..
huggzzz
Shari
|
|
IP Logged |
Only two defining forces have ever offered to die for you,
Jesus Christ and the American Soldier.
One died for your soul, the other for your freedom.
|
|
|
Kilo
Guest
|
Jim,
Your post made me cringe. Wish there were something I could do for you...for all of us. I'm glad to hear you're changing meds. Verapamil at 480mg worked for me for a lot of years. Never even needed abortives until my current episode. I hope it works as well for you.
Wishing you PFDAN--or at least nothing higher than a Kip 5!
Kilo
|
|
IP Logged |
|
|
|
Jim R
New Board Hall of Famer
Always question authority....
Gender:
Posts: 603
|
|
Re: Unrelenting...
« Reply #17 on: Aug 27th, 2002, 6:49am » |
Quote Modify
|
Thanks again everyone. Now, for you scientists out there, I have a question: why would my neuro specifically state that he wants me to take the Topamx "right on top" of the verapamil, not separately. What would be the connection/interaction? Thanks in advance...
Had to take 2 Percocets last night, along with a phenergan pill as the CH was rapidly building up to where it was the night before (HELL). If I wait too long, nothing will work but a trip to the ER, but hey - no ER trip last night!!  And yes, I know it is very easy to become addicted to narcs - I code the charts of addicted people all day long at the hospital, so I'm hoping with all my heart that this medication change does the trick. The sad thing is my wife said if there's nothing else that can be done, she doesn't care if I am "chronic pain - narcotic addicted" if I am having no pain. I guess this highlights the helplessness bystanders and supporters experience with this horrible disease. But I don't want to live my life like that and will keep on the doctors' cases until I find a regime that works... PFDANs to you all - Jim R
|
|
IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
Dan H
New Board Junior
AHH!! Not again tonight!!!! RUN!
Gender:
Posts: 99
|
|
Re: Unrelenting...
« Reply #18 on: Aug 27th, 2002, 5:27pm » |
Quote Modify
|
Jim,
This year has been the worst year that I have had in 15 years. I am very sorry to hear that you are having to deal with an intense bout.
My neuro helped me this year allot... verapamil at 960 mg, prednisone and depakote. The prednisone kicked the crap out of me but also knocked the cycle out of me.
Continued with a few shadows the following weeks along with the verapamil which was reduced to 480 mg per day and the depakote. After being PF for 2 weeks all meds were stopped.
Good luck with your meds... narcotics do not help.
........Dan H
|
|
IP Logged |
Dan H (a.k.a. dlh524) - Orting, Washington
Dream as if you will live forever. Live like you only have today. Life is priceless. The richness in life are those we call friends.
|
|
|
MyHeadHurts
Guest
|
Hi Jim. I'm a newbe at this site but I can completely understand how you feel (I was the one who posted the "What do you tell yourself to want to live" post). My husband was in the same situation as your son the other night (he was almost in tears watching me bang my head, turn upside down and contort in various positions) only I couldn't go to the ER because I wouldn't have anyone to watch my 8-year old at 2:00 a.m. So I took a shower in the dark. Not a viable alternative, but the only one I had.
I have the same fears about the painkillers (that I'll be ready for rehab by the time my cycle is done) but since my insurance company cut me off Imitrex injections, I have no alternative.
I hope you get some rest and that you'll be feeling better soon.
Regards and good luck
|
|
IP Logged |
|
|
|
Jim R
New Board Hall of Famer
Always question authority....
Gender:
Posts: 603
|
|
Re: Unrelenting...
« Reply #20 on: Aug 27th, 2002, 8:32pm » |
Quote Modify
|
Hi My Head Hurts,
I am so sorry that you are in the same boat as me and especially that your insurance company has cut off your imitrex. I hear this so much and I don't think it is right! These GD insurance companies should be held accountable - they rake in billions a year in profits and arbitrarily cut people off from the only medication that helps them!! IT REALLY SUCKS! I can't use imitrex myself but this doesn't temper my anger towards these bastards. My heart goes out to you and my best wishes that you find something that helps you in your fight again this most insidious of beasts. PFDAN's to you. - Jim R
|
|
IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
oringkid
Guest
|
There is something wrong with this picture!! They cut you off of imitrex, which is not addictive and hand out narcotics like candy! What the hell is wrong with this world??
Sherry
|
|
IP Logged |
|
|
|
Jim R
New Board Hall of Famer
Always question authority....
Gender:
Posts: 603
|
|
Re: Unrelenting...
« Reply #22 on: Aug 28th, 2002, 6:57am » |
Quote Modify
|
Ueli - I was able to convince my family practitioner to up my verapamil (he chose this rather than going with a different calcium channel blocker such as nifedipine) to 480 mgs/day but this is as high as he would go, saying this was the top of their practice parameters (but that the neurologist could go higher if he wanted to. The neurologist, however, was a bit skepitcal even about the 480 mgs. and muttered something about he guessed it would be okay as long as I didn't feel faint when I got up from sitting in a chair. Then he explicitly stated that he wanted me to take the Topamax "right on top" of the Verapamil each time. Any idea why he wants this done?
Had my first day on this regime yesterday and did have a CH last night. Saw Jonny's post though about Verapamil (or increased verapamil) taking time to get into the body and maybe this is why I still had a CH????
Jim R
|
|
IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
Kilo
Guest
|
Jim: So sorry you're still having problems, but hang in. The verapamil does take a while to get going. You might first start to notice a reduction in the intensity of the pain, or in the duration of the HA. It'll most likely be more of a gradual thing rather than a sudden cessation of CHs. I know it's tough, and I feel for you, pal.
Just read through the whole thread and can't see that you mentioned using any of the standard abortives, like oxygen or Imitrex. Did I miss it somewhere? Or have you tried those already and found they don't work? While the addiction potential of the narcotics is definitely important, what's really critical here is that they don't relieve your pain! Maybe there are some less dangerous AND more effective options out there for you.
Wish I had more to offer.
Kilo
|
|
IP Logged |
|
|
|
Jim R
New Board Hall of Famer
Always question authority....
Gender:
Posts: 603
|
|
Re: Unrelenting...
« Reply #24 on: Aug 29th, 2002, 6:00am » |
Quote Modify
|
Hi Everyone,
First, thank you all for your concern and suggestions. I hope to wrap up all the loose ends with this post...
I've been on 240 mg. of extended release verapamil for years and for years it put me in remission (until last year). Yes, I use O2 but it doesn't always work for me. Lithium worked for me last year (1200 mg./day) albeit with significant side effects but was making me very ill this year and they have taken me off it. They have now doubled my verapamil to 480 and put me on Topamax 200 mg/day and I am happy to say I am PF but I am having a lot a dizziness and don't dare drive. Also have strange taste in my mouth and carbonated drinks taste foul - has anybody else on Topamax experienced these symptoms? Don't get me wrong - they're definitely worth it to be PF!!
Again. thanks for all your good wishes!! - Jim R
|
|
IP Logged |
"Hammer of the Gods..." (pounding on my head...) and isn't Bowie great?!
Proud member of OUCH
Episodic Clusterhead since 1978
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss