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        New Message Board Archives >> 2003 Posts >> PLEASE help me!!!!!
        
(Message started by: islandtimefl on Apr 6^th, 2003, 12:48pm)

Title: PLEASE help me!!!!!
Post by islandtimefl on Apr 6^th, 2003, 12:48pm

I am begging anyone out here. PLEASE help me. I am not physically nor mentally strong enough to withstand one more bout of the severe pain that has hit me five tiomes now since Monday morning. Yesterday it hit twice. This morning it hit again. I've gone from unbearable pain to just severe pain now. I've been having cluster cycles for 14 years now but never have they been this bad. Also for the first time in these 14 years this cycle has come at a time when I have never experienced a cycle. I would go to the hospital but the last time I did a doctor yelled at me for screaming and groaning. I have never in my life honestly wanted to take another human's life like I wanted when he did that to me. I'm now afraid to go to the hospital and I also fear they would try to put restrains on me instead of helping to ease my pain. Twice in 2001 I allowed them to give me a shot of Demerol and another of Valium. It didn't stop the pain but it made me not care that I was in pain. I know this is what I now need but how do you explain this to a doctor without coming off as a drug addict? I have had these exactly twice but I can't ask for them. To complicate matters I am physically disabled. Oxygen isn't working now and I'm unable to take Imitrex for other neurological reasons. PLEASE help me someone. I go from begging God to end my life one second and the next I'm begging God to not let this kill me. This is the absolute pinnacle of pain that my body and mind can endure and I'm not surew I can continue to endure it.
PLEASE HELP ME!!!!!!

Title: Re: PLEASE help me!!!!!
Post by Linda_Howell on Apr 6^th, 2003, 1:19pm

I don't mean to sound harse, but YES you can endure this. The alternative to not enduring it...isn't real nice.

I wish you had told us more about what you can take. Imitrex and other Triptans are the first line of defense, but if you can't take Imitrex, there are other drugs which WORK!!! In the links to the left of where you are now reading this, click on medications and then maybe you and your Dr. can come up with a drug that works for you.

Don't give up on the oxygen just yet.

and yes everyone...I'm getting on my soap box again re: the narcotics. They don't work for cluster headaches. If they dull the pain at all they will give rebound headaches from hell and will addict you and then you'll still have clusters PLUS another problem.

I find it strange that because of your disabilities, you can't take Imitrex, but Narcotics are O.K.? Do you have a GOOD Neurologist? That is a key factor.......

Finally..If you have had clusters for 14 years, then I have to disagree with you that you are not mentally strong enough to cope. You've already proved that you are strong enough. This is the worst pain known to man......and you have dealt with it for all these yrs.

Linda Howell

Title: Re: PLEASE help me!!!!!
Post by catlind on Apr 6^th, 2003, 1:19pm

Robert,

Please check your email. You can use ice, exercise, stick your face in an air conditioner and breathe deep, take a hot shower, drink some black coffee, put tobasco under your tongue, try anything at all to get you through!

Hang in there, there is an end in sight!

Cat

Title: Re: PLEASE help me!!!!!
Post by achinghead on Apr 6^th, 2003, 1:23pm

Im sorry that your going through this.. I really dont know what advice to give you since you cant take imitrex and the 02 isnt working.. I just want you to know that your not alone. I too am having the worst cycle in 16 yrs of having these. Im getting hit almost every 3 -4 hrs and also at different times of the day. Very unusual for me. Fortunately the trex and the 02 do work but it still makes me feel enslaved, Just dont give up. Im sure someone on here may have some type of advice on what you may be able to do. Again.. I just want you to know that your not alone..
GOOD LUCK TO YOU

Title: Re: PLEASE help me!!!!!
Post by Kcir on Apr 6^th, 2003, 1:28pm

islandtimefl,

Please explain how you are using the oxygen.

Rick T

Title: Re: PLEASE help me!!!!!
Post by Sean_C on Apr 6^th, 2003, 2:07pm

I agree, are you using the O2 correctly? Although if your having a 50 then nothing works at all for me either. But I promise you you won't die.... I don't think anyway. When I get a 50 I know what the problem is I'm having, I'm having a really bad cluster. Do you have a supporter at home to help you cope? The best thing I can suggest is to forget the Dem and Val altogether, Linda is exactly right. I've had morphine before anybody knew what these things were and you can rebound wicked with no relief. My advice is try some alternate meds, although they didn't work in that cycle its possable that they might this time. I went 10 + years, no meds at all. So I know you can do it, lots of us have. It sucks, but they come and go. Also, check your diet, something maybe triggering the intensity. Stress level etc etc. Hope this helps.
Just had my 24th CH anniversary Friday guys, "WTF"
Sean

Title: Re: PLEASE help me!!!!!
Post by Sean_C on Apr 6^th, 2003, 2:09pm

Title: Re: PLEASE help me!!!!!
Post by Georgia on Apr 6^th, 2003, 2:10pm

First of all....you are strong enough. You have to be. This is exactly what the beast wants...to tear you down to the point where he doesn't even need to inflict pain on you anymore, he has you on the edge of doing it yourself. Don't. Do not let him win this battle. Fight and we will fight with you. You are not alone.

Tell us if you were using a non-rebreather mask with your 02.

Tell us when the ch are hitting most....day time, night time, waking you from sleep, etc.

Call your neuro. Now. Tell the answering service it is an emergency and you need to speak to the dr NOW. When he/she calls....tell him you need something to stop the pain NOW....insist that he/she calls something in for you...Some abortive that might work...I don't know what you have tried already, but there are lots of choices out there if you can't take Imitrex (does that mean you can't take any of the triptans?)...try DHE-45 nasal spray or Stadol NS or cafergot or a non-rebreather mask if you don't have one. Then ask for a preventative if you aren't already on one...maybe some prednisone to try to stop the cycle...maybe some verapamil....maybe some lithium....just anythhing to break the cycle. Call now. Go. Do it. And then let us know what happened. There is always someone here.

Peace and love,
Georgia

Title: Re: PLEASE help me!!!!!
Post by brain_cramps on Apr 6^th, 2003, 2:21pm

Islandtimefl:

check your IMs

on 04/06/03 at 14:10:59, Georgia wrote:

There is always someone here.

I've haven't slept in months and she's right. (except the other night after MichaelC went running off ;D)

grant 8)

Title: Re: PLEASE help me!!!!!
Post by Wendy1 on Apr 6^th, 2003, 2:46pm

GET ON SOME PREDNISONE!!! A large dose, and do a slowwww taper for a week or so. If you need a taper dosage, let me know. This should give you a break. Also, are they giving you enough Demerol? 50mg will cut the pain, but 100mg should do the trick.

I'm having a hard time right now too. I am on Verapamil 240mg twice daily, also was given some prednisone. But basically I take 750mg Vicodin and an Amerge and wait an hour for it to work. If I can't bear the pain I go to ER. GOOD LUCK, LET US KNOW~~~~!! BUT GET ON SOME PREDNISONE!!!

Title: Re: PLEASE help me!!!!!
Post by brain_cramps on Apr 6^th, 2003, 3:00pm

on 04/06/03 at 14:46:37, Wendy1 wrote:

Also, are they giving you enough Demerol? 50mg will cut the pain, but 100mg should do the trick.

While demerol might give short-term relief, IT IS NOT THE WAY TO GO. IF you have a KIP-10 that nothing will touch... go ahead, BUT DON'T MAKE A DAILY HABIT OF IT. Years ago, that was only semi-effective way I was treated, but the addiction/rebounds can be BAD!!! There are so many other options!!!

(BTW Wendy, when I was getting demerol, 100 wouldn't even come close. At times, I was getting up to 400 to knock me out AND I only weigh 160lbs !!!)

PFDAN,
grant

Title: Re: PLEASE help me!!!!!
Post by cathy on Apr 6^th, 2003, 3:51pm

islandtimefl.....there is light at the end of the tunnel and you will get to it I promise, just hang in there you guys are stronger than anyone I've ever met, you endure pain which is unimaginable to anyone who hasn't suffered with clusterheadaches, and I know your strong enough to get through this..

Wishing you painfree days and nights and a swift end to this cycle.

Cathy

Title: Re: PLEASE help me!!!!!
Post by Roxy on Apr 6^th, 2003, 4:04pm

on 04/06/03 at 13:19:00, Linda_Howell wrote:

I don't mean to sound harse, but YES you can endure this. The alternative to not enduring it...isn't real nice.

Linda stated it better than I could. You can endure this pain. It might not be easy, but you are strong enough to handle it.

Don't give up on the 02, just keep trying it. How have you been using it....do you have the right mask, the right flow rate? Let us help you in anyway we can.

Do what catlind said....use all the other abortive methods you can think of, you never can tell what will work.

The clusterhead family will be here to help you through this, we have all been there, and we know you are tough enough to make it through this.

T

Title: Re: PLEASE help me!!!!!
Post by K. on Apr 6^th, 2003, 5:13pm

on 04/06/03 at 16:04:11, Roxy wrote:

The clusterhead family will be here to help you through this, we have all been there, and we know you are tough enough to make it through this.

I second that! A lot of us went through years of suffering before we were diagnosed correctly and found the right meds. Research all you can and as suggested in other posts, find the abortives that work for you. Ask questions. You CAN do this. Don't use the narcotics, they don't work on clusterheadaches anyway.

Karen

Title: Re: PLEASE help me!!!!!
Post by Wendy1 on Apr 6^th, 2003, 5:37pm

on 04/06/03 at 15:00:56, brain_cramps wrote:

That is a bummer that Demerol did not work for you. I have to use ER/Demerol approx. 3-4 times out of an 8 wk cycle. And 100mg works miracles for me without the rebound effect. So I wouldn't necessaryily rule it out for everyone just because it does not work for you.

Title: Re: PLEASE help me!!!!!
Post by don on Apr 6^th, 2003, 5:46pm

Go the hospital and demand relief. They are ethically obligated to treat your pain.

Title: Re: PLEASE help me!!!!!
Post by jonny on Apr 6^th, 2003, 5:50pm

islandtimefl,

Suck it up!!!!!

You been doing this for 14 yrs.

I've been doing it 28 chronic.

You can and will get through this.

Me?......I will always survive!

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

Title: Re: PLEASE help me!!!!!
Post by amber on Apr 6^th, 2003, 8:29pm

Careful Jonny...I know you mean to help, but by comparing your ability to deal with someone else who is obviously really stressing out right now...just makes it look like they are 'weak' for being upset.

Everyones threshold of pain is different.

Besides, you don't know what kind of physical disability this person has that may be causing the added pressure and stress. People with noticeable disabilities get treated differently at hospitals all the time because people aren't prepared to deal with it.

Having said that, I'm sorry that islandtimefl is having such a shitty time, but I'm glad you came looking for some help and at least to vent. Sometimes that's all we need to do to make it through the day.

take care islandtimefl
Amber

Title: Re: PLEASE help me!!!!!
Post by brain_cramps on Apr 7^th, 2003, 10:29am

on 04/06/03 at 15:00:56, brain_cramps wrote:

on 04/06/03 at 17:37:30, Wendy1 wrote:

Wendy:

Its not a matter of the demerol not working for me. If anything, it worked TOO GOOD.

The risk of addiction/rebounds is too big to consider this a viable option. With ALL of the other options that weren't available 15 or 20 years ago, someone would have to be crazy to reccommend this route.

BTW If you only used demerol '3-4 times in an 8 week cycle', you are hardly in any position to make any judgement about its side-effects (ie addiction, rebound).

Try going more than 30 times during a 8 week period (on top of being prescribed percocets, percodans, fiorinal, codeine, etc...) AND THEN STOPPING!!! You'll definitely have a different view of narcotics!

grant ::)

Title: Re: PLEASE help me!!!!!
Post by islandtimefl on Apr 7^th, 2003, 10:40am

Demerol DID work for me. Not to ease the pain but to relax me and allow me to get through the pain. That plus a shot of Valium. I have no idea what the dosages were. I'm going to try to get to the VA hospital this week to see if I can get some sort of abortive measure for an individual headache plus for a cycle. I guess I have lots of reading and research to do before I go because I'm kinda clueless as to what to suggest to the doctor.

Title: Re: PLEASE help me!!!!!
Post by catlind on Apr 7^th, 2003, 10:58am

That's awesome to hear island,

Glad that you are going to go and talk with the doc. I suspect based on your strokes, and the nature of doctors in fear of lawsuits, the triptans in any form will not be an option for you. I don't expect they will be happy giving you ergots either, but I would think your best bet might be to talk to them about the ergotamine compounds available. Another option might me stadol NS. It's still a narcotic, but several people have had good luck with it. Upping your verapamil is a good choice as well. You may want to get some prednisone until the verap is in full force (not my personal choice, but it's not me in your situation). Read the med section from the buttons on the left, and print out as much info as you can so you can go in to the doc with something hard copy to show him. I deal with the military (hubby is active duty) so I have a bit of an idea how miserable it is to get them to pay attention. I think the VA is even more of a nightmare based on the stories told by some here. Remember, knowledge is power, and in this battle, it is your best weapon.

Good luck and keep us posted!

Cat

Title: Re: PLEASE help me!!!!!
Post by cbolony on Apr 7^th, 2003, 11:17am

i get 3-4 cycles a year went 6 years with no meds
3-4 sometimes more CH a day.Every CH i say to myself WHY ME as i run around holding my left side of my face and my left eye feels like some one put a red hot metal
rod in my eye for about 1 1/2 to 2 hours.The pain will go away hang in there we all do.

Title: Re: PLEASE help me!!!!!
Post by ZAIRA on Apr 7^th, 2003, 3:53pm

Hello, I’m Zaira and I come from Italy.
I know what you are feeling, besides the pain, to have doctors who can’t understand you, it is very very painful... I lived the same situation when I was 14 and I would have killed every doctor who didn’t believe me! >:(
If O2 and Imitrex don’t work, what have you been taking in over 14 years of attacks?

Stay with us... the share of CH with other sufferer has been very important, for me has contributed to improve the quality of my life.... because I don’t fight alone!

Try to be strong, you are not alone!

My preyers are for you, good luck

Zaira :-*

Title: Re: PLEASE help me!!!!!
Post by Wendy1 on Apr 7^th, 2003, 9:00pm

on 04/07/03 at 10:29:43, brain_cramps wrote:

Grant:

Islandtime is obviously desperate. I have been episodic for 20+ yrs and know all too well all the ins and outs. I was not suggesting Demerol as a cure, as I obviously pointed out the prednisone. However, If I am (and it sounds as though Islandtime is) about ready to grab a cleaver, and my Amerge, Toradol, Vicodin, DHE, O2 is NOT WORKING.... I WILL SEEK out ER and I WILL GET RELIEF. This does not happen all the time, as most of the time I choose to endure the pain. AND YES, I do have the 1-3 daily. And I choose my other routes. Don't be such a hard nose about the ER! It has saved my life MANY times.

Title: Re: PLEASE help me!!!!!
Post by Charlie on Apr 7^th, 2003, 11:43pm

I think pain thresholds vary. Still, it doesn't last forever. Here's something to try:

Dr. Wright's Circulatory Technique

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 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. Often, 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 but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on 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. Don’t let up until you are sure the attack has ended.

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

Title: Re: PLEASE help me!!!!!
Post by brain_cramps on Apr 8^th, 2003, 12:28pm

on 04/07/03 at 21:00:25, Wendy1 wrote:

Don't be such a hard nose about the ER! It has saved my life MANY times.

MY point is... narcotics are not only a band-aid, they are a DIRTY band-aid (ie other additional problems)

BTW I've been MED-FREE for more than 5 years!!!

Title: Re: PLEASE help me!!!!!
Post by brain_cramps on Apr 8^th, 2003, 12:31pm

on 04/07/03 at 21:00:25, Wendy1 wrote:

Don't be such a hard nose about the ER! It has saved my life MANY times.

HOW could it possibly SAVE YOUR LIFE from CH? CH or the pain won't kill you. ONLY your reaction to it can!!!

Title: lean on us
Post by rumplestiltskin on Apr 8^th, 2003, 1:19pm

Folks here are willing to argue over certain treatments because they know where you are and what you are dealing with and honestly care about yer well being.....and from that caring tempered with varying good and bad experiences with different techniques often comes a lively debate about how to best help you.

Some go for Painfree at any cost.
Some concentrate on drug free living.
Some view this disease as a red badge of courage...others a curse.

The differences in personalities and the wild diferences in how CH manifests itself and reacts differently to a wide variety of Pain management techniqes and the lack of understanding and info in the medical community seems to be one of the main reasons this site is so important and has spawned OUCH organizations all over the world.

The worst pain man can endure...we take this shit seriously.

Read EVERYTHING on those left links. Things tried once unsuccessfully sometimes work differently when retried in another way or combined with other techniques. It seems to resemble an intricate carburator sometimes...a slight tweaking here or there makes a huge difference in performance.

Walk in the sunshine
den