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        Cluster Headache Help and Support >> Cluster Headache Specific >> I do not think 
        
(Message started by: rapunzel on Mar 15^th, 2006, 11:14pm)

Title: I do not think
Post by rapunzel on Mar 15^th, 2006, 11:14pm

that asking someone to knock you unconscious is a strange or unreasonable request. My husband refuses to.

I hear there is a stupid game that some kids play called Pass Out- tonite I find it appealing, intriguing...like- I wish I knew how to do it correctly-

I absolutely cannot go thru another night like last night. I had a continuous hit from 11:30 until 4:30 this a.m. that never let up- crying, squirming, thrashing, begging to die- bad. Then, I had to work this evening. I have been a half-vegetable all night, with a very uncomfortable pain in my eye and across the bridge of my nose and my temple ALL day/evening long.

I want to sleep- every night I have been taking 12mg of melatonin, my stupid prednisone, and a darvocet for the heck of it I guess, all to no avail.
Tomorrow morning is my doctor appt. My husband is coming with me to demand a neuro referral. Tonite is my last pill of pred. Tomorrow I get to find out that my cat scan came back normal.
I want to go to bed- but there is no way that I can make it thru another episode like last night. I just can't, and I am scared to go to sleep.

Title: Re: I do not think
Post by AussieBrian on Mar 16^th, 2006, 1:05am

on 03/15/06 at 23:14:08, rapunzel wrote:

that asking someone to knock you unconscious is a strange or unreasonable request. My husband refuses to.

The insensitive bastage. Hang tough, Raps, we're with you all the way.

Title: Re: I do not think
Post by Jasmyn on Mar 16^th, 2006, 1:58am

LOL Brian [smiley=laugh.gif]

Rapunzel, good luck with the doc's appointment. I found it is better to sit and sleep, even if you only get an hour or so.

Sit at a 45 deg angle, bed or couch, pillows stacked behind you, an icepack on that side of the head and neck, a fan blowing onto the top of your head and some ice water to swirl around in your mouth.

Hope you get some z's.

Title: Re: I do not think
Post by E-Double on Mar 16^th, 2006, 2:14am

What amazin gsense of humor we must have!!! [smiley=laugh.gif]

We have all been there!

You will make it happen with out being knocked out by your hubby.

If not tell me where you live and I will send over some "friends" who will pay you a visit ;)

Seriously, try different positions to sleep as Jas suggested. Do not try to fight sleeping if you can because that will only bring on the sleep cycle quicker and make the attacks come quicker and more fearce.

Be well.

E

Title: Re: I do not think
Post by burnt-toast on Mar 16^th, 2006, 3:32am

on 03/15/06 at 23:14:08, rapunzel wrote:

I want to go to bed- but there is no way that I can make it thru another episode like last night. I just can't, and I am scared to go to sleep.

I can honestly say I know what this is like and (at risk of speaking for others) believe a lot of folks understand this side effect of this disease.

Sleep - Ch wakes you up. Need to sleep - CH won't let you. Really need sleep - but afraid to.

A referral to a Neurologist specializing in headache disorders/familiar with CH may be you're best bet for finding relief. Keep a good journal and track the effectiveness of each treatment until you find something that helps.

God Bless

Tom

Title: Re: I do not think
Post by rapunzel on Mar 16^th, 2006, 3:53am

i love you guys, I really do.

I managed to get two hours sleep- I feel revived! Who needs eight? Sooooooooooo anyhow I wanted to share a positive side of these clusters with you.

My dogs love it.

Oh, they would never admit to it- the way they kiss me and clamber all over me during a hit- I always thought it was out of concern, but tonite it hit me. After the episode had passed, they all ran to the kitchen- where their food dishes are. Yep...usually after I know that there isnt going to be any more sleep, I begin my morning routine no matter what time it is. You know- make coffee, feed the dogs....in three weeks they have all probably put on a pound each..

Jasmyn- ice would kill me. I cant handle the cold packs, ice water, etc. especially during a hit- no way-heat, on the other hand is better. I bought an extralarge heating pad to throw over my face. I always imagine that anti-drug commercial after a bit of it. You know the one- this is your brain (camera shows an egg), this is your brain on drugs- then they show the egg frying in the pan.

Title: Re: I do not think
Post by Gator on Mar 16^th, 2006, 6:01am

I brought my wife my rubber mallet and asked her to knock me out, too. She wouldn't do it, either. :-/

I'm glad you got some shut eye. I have heard of people here who get the typical wake up call 90 minutes after falling asleep, actually setting their alarms to wake them up just before the beast would normally strike. Then repeating the cycle.

As far as insomnia goes...you see where I still am at 5am in the damned morning. >:(

Hang in there. It gets better.

Title: Re: I do not think
Post by rapunzel on Mar 16^th, 2006, 6:58am

When i was waiting for my catscan, I thought I had fooled the beast- I napped for thirty minutes. Usually, I get hit forty minutes after I fall asleep. Sooooo, ten minutes after I woke up in the waiting room- I got hit.
I had my catscan during the beginning of an episode. Soo, if there is anything to see during that time, it should be on there. I go to the dr today.

Now, if I had a rubber mallet I definitely would have been tempted to try it on myself. I considered the tree this morning. I had a second episode at 6am today, but my son was awake for school so I spent the duration out in the backyard. I probably would have rammed my head into the tree, but my fear is that I wouldnt have done it right and would have remained conscious with an extra head pain.
Gator, hope you get a little sleep,

Kim

Title: Re: I do not think
Post by chewy on Mar 16^th, 2006, 7:18am

That Darvocet may be your worst enemy.

Title: Re: I do not think
Post by karrie35 on Mar 16^th, 2006, 7:24am

Hi--

I was always told to take the prednisone at morning , always before 9:00 a.m. as it interferes with sleep.

Title: Re: I do not think
Post by rapunzel on Mar 16^th, 2006, 7:46am

on 03/16/06 at 07:18:02, chewy wrote:

That Darvocet may be your worst enemy.

WHY??? I am very curious- the only reason why I have been taking it is because I dont have anything to take while having an episode, and we all know any pill you swallow at the beginning of an attack wont have time to work anyhow- so I have taken it before sleeping so that maybe it would take the edge off the first hit about forty minutes later. (of course, it hasnt felt like it has done anything).
But, if you have reason not to, I wont take another one.

Karrie- really???? My dr never mentioned anything about taking the pred at a certain time of the day- they only said after eating something. This two week dosage is over, but I certainly will remember that if there is a next time.

Title: Re: I do not think
Post by chewy on Mar 16^th, 2006, 8:02am

Narcotics,like Darvocet are known triggers.

What dosage of prednisone are you taking? Are you on a taper?

If the Doc Rxed a taper without adding a preventative then he needs some CH education.

Title: Re: I do not think
Post by rapunzel on Mar 16^th, 2006, 8:18am

I had a two week dose of 10mg Pred- started out taking six pills a day, down to one. Took the last pill last night. He also prescribed me Darvocet. Thats all I got.
I am taking my husband with me today to help convince him to give me a neuro referral.

I have been drinking as much water as I can handle, Red Bull, and coffee. Gotta have the coffee. ;;D

Title: Re: I do not think
Post by chewy on Mar 16^th, 2006, 8:34am

You definitely need to see an educated neuro. A predisine taper without a preventative is almost always useless in breaking a cycle.

Try not taking that darvocet at night and consider melatonin.

Dump your Doc. No preventative and a narcotic for aborting is mid evil treatment.

Title: Re: I do not think
Post by MJ on Mar 16^th, 2006, 9:27am

Rapunzel

I second what Chewy says on the Darvocet. Both tylenol and codeine (aka Darvocet,) a narcotic will prolong a hit and often make it worse. At least for me.
The way they work is to make your body feel pain differently so some people often think they are getting some relief but in reality the hits are longer the pain can be stronger aaand you just might want someone to hit you over the head.

Narcotics are generally of no value for most CH sufferers.

Title: Re: I do not think
Post by Pinkfloyd on Mar 16^th, 2006, 9:54am

on 03/16/06 at 09:27:14, MJ wrote:

Narcotics are generally of no value for most CH sufferers.

This is true, although Stadol is probably the most effective and safest if used from time to time.

on 03/16/06 at 07:39:19, chewy wrote:

Quote:But what is wrong with taking narcotics on an occasional basis

Nothing if it helps.

This is true, as long as they don't cause more problems than they help.

on 03/16/06 at 08:02:06, chewy wrote:

Narcotics,like Darvocet are known triggers.

I guess chewy can't make up his mind.
But this statement is bullsh*t.

Bobw

Title: Re: I do not think
Post by Richr8 on Mar 16^th, 2006, 4:35pm

on 03/15/06 at 23:14:08, rapunzel wrote:

that asking someone to knock you unconscious is a strange or unreasonable request.
Nope! Good plan. In cycle, I agree!

I absolutely cannot go thru another night like last night. I had a continuous hit from 11:30 until 4:30 this a.m. that never let up- crying, squirming, thrashing, begging to die- bad. Then, I had to work this evening. I have been a half-vegetable all night, with a very uncomfortable pain in my eye and across the bridge of my nose and my temple ALL day/evening long.
You will survive tonight as you did last night, only to suffer again. Welcome to clusterville home of the toughest f----rs on the planet.

Tonite is my last pill of pred.
Why are you stopping the pred while still being hit? Did it not work? Typically, I increase the dose until the CH responds. How much were you taking?

I am scared to go to sleep.
I use the term, "terrified of sleep" when in cycle. This is an added bonus, or feature , as they like to call it in the business.

Title: Re: I do not think
Post by mynm156 on Mar 16^th, 2006, 4:41pm

"Narcotics,like Darvocet are known triggers. "

I disagree. There have been several posts here regarding Clusterheads having to be on Narcs for some other reason and not getting hit. I have been one of those. If your taking Narcs for the hell of it then then I dont know. CHARMA?

MYNM156

Title: Re: I do not think
Post by rapunzel on Mar 16^th, 2006, 5:41pm

on 03/16/06 at 16:35:21, Richr8 wrote:

I stopped the pred because there is no more. He gave me a two week dose, starting at 6 pills a night, ending at one pill. It didnt help. BUT- it did make me eat- everything. :-X

I have the darvocet that I will use when desperate. I know it probably wont work, but nice to have it in case nothing else is available.

They gave me depakote today, but I am worried about it. The side effects seem pretty severe. My old boss told me there is no way I will be able to take it and work. I guess I will find out.

I have imitrex pills. Ten years ago, I had an allergic reaction to the imitrex injection- but we are wondering if I had a reaction to the injection or if I had just overdosed myself on meds during a hit- it has been too long for me to recall what I swallowed out of desperation way back then.
It will be an experiment when I take one of these pills, with my husband on stand-by if I need help (ie; can't breathe).

I will continue with the melatonin- I have been taking 12mg nightly. So far, nothing has helped. But I am still hopeful. I am so exhausted. Terrified of sleep sums it up perfectly.
I will call the neuro in the a.m. and make my appt asap.

Title: Re: I do not think
Post by marlinsfan on Mar 16^th, 2006, 5:45pm

What are you eating before you go to sleep? I found a bunch of triggers. I stay away from nuts, chocolate, citric acid (oj, mountain dew, etc), aspartame (equal, diet coke).

GOod luck tonite!

Title: Re: I do not think
Post by rapunzel on Mar 16^th, 2006, 5:57pm

I really dont eat anything before bed. I dont thinks so anyhow-
usually at work until late, dinner around five/six. Nothing comes to mind. Lots of red bull and espresso lately though.

Kim

Title: Re: I do not think
Post by marlinsfan on Mar 16^th, 2006, 6:14pm

I can't touch red bull because of the high citric acid content it in. I use Starbucks Doubleshot Espresso & Cream cans, same size, same price, a little sweeter, same about of caffeine with NO citric acid...

I'm not a believer in the single cure/source of the problems, but maybe you're as sensitive to citric acid as I am.

Title: Re: I do not think
Post by chewy on Mar 16^th, 2006, 8:16pm

My mind is thoroughly made up. Narcotics are known triggers but if it helps then occasional usage is fine.

Whats hard to understand about that?

You might want to try Dramamine for sleep?

Title: Re: I do not think
Post by Pinkfloyd on Mar 16^th, 2006, 9:06pm

on 03/16/06 at 20:16:51, chewy wrote:

My mind is thoroughly made up. Narcotics are known triggers but if it helps then occasional usage is fine.

How many known triggers can help?
Alcohol? Known trigger.....can occasional usage help?

Narcotics are NOT known cluster triggers.

Narcotics can cause rebound headaches but rebounds are NOT triggers and they are NOT clusters. Narcotics don't even trigger rebound headaches. A trigger is the introduction of a substance or environmental change that causes a headache to begin. Narcotics can "cause" a rebound effect, but it is the elimination of the narcotic from the system that causes the rebound effect, not the introduction.

Again, narcotics do not trigger cluster headaches.

Next time come back as someone with a clue.

Title: Re: I do not think
Post by chewy on Mar 16^th, 2006, 9:19pm

Anything you say Mr. Floyd. LMAO!

( A 52 yeargrown man who refers to himself as "PinkFloyd". Well.......decide for yourself. To many schrooms Mr. Floyd? LMAO)

Title: Re: I do not think
Post by BikerBob on Mar 16^th, 2006, 10:57pm

Don, the debate is about whether or not narcotics are a CH trigger. You say they are and he says they're not.

You are the one who made the original claim that narcotics are a trigger. Where's your reference material to back up your claim? Got any links to webpages that say so?

You're being adolescent, almost infantile, by trying to change the subject to:

on 03/16/06 at 21:19:39, chewy wrote:

Anything you say Mr. Floyd. LMAO!

( A 52 yeargrown man who refers to himself as "PinkFloyd". Well.......decide for yourself. To many schrooms Mr. Floyd? LMAO)

Show us your backup material for your claim or STFU.

BB

Title: Re: I do not think
Post by nani on Mar 16^th, 2006, 11:01pm

Rapunzel, I'm sorry you're having such a bad time. Hopefully we've been able to help. Please ignore any posts to this thread that are not directly related to yours. We really are here to help. pf wishes, nani

Title: Re: I do not think
Post by chewy on Mar 17^th, 2006, 6:50am

Rapunzel,

Try skipping the darvocet and see if there is a differance.

If the melatonin is ineffective try the dramamine.

Title: Re: I do not think
Post by CHTom on Mar 17^th, 2006, 8:02am

If there is a scientific article that proves that narcotics are a trigger then I'd like to see it; the same for narcotics causing CH "rebound" HA pain. None of my docs-neurologists, internists, neurosurgeons-have ever said to me that narcotic use for CH pain causes "rebound" headaches or trigger a CH attack and there is nothing in the medical literature that supports either contention. Aside from your mind being made up that they do cause these phenomenons, Chewy, what is your proof? I've asked this question before on another post but no answer came and I think that the reason is that because there is no answer, no proof. I'll wait while you dig something up-send the link. Maybe we should follow the advice of the guy-I forgot his name-who recently posted that regular enemas will stop CH pain-"sheeesh "(want to use another word but it would probably get censored out ::)). I think that I'll go have a nice big bowl of Fibre One with prune juice now.

Title: Re: I do not think
Post by burnt-toast on Mar 17^th, 2006, 8:33am

Repunzl - other interested parties. Let's keep things moving in a positive direction.

Here are a few online resources - CH - Diagnostic, Treatments/Medications, Rebound H/A, Narcotics use.
Everyone can make up their own minds about the best treatment option(s) for themselves.

Very well written/illustrated article apparently done privately by someone close to our little CH hearts http://www.miqel.com/clusterheadaches/clusterheadaches.html

Good article covering CH diagnosis/treatment/medications, etc.
http://www.umm.edu/patiented/articles/what_treatments_cluster_attacks_000099_8.htm

Good general CH diagnostic/treatment/medications brief reference to opiates and valid uses http://www.emedicine.com/EMERG/topic229.htm

General headache descriptions/includes CH - briefly cover rebound headache/dependency issue and treatment options http://www.achenet.org/resources/headfact.php

CH specific reference diagnosis/treatments brief reference to little value in opiates
http://www.touchbriefings.com/pdf/1239/rozen.pdf

Good article on rebound headaches/causes, symptoms, prevention
http://www.cnn.com/HEALTH/library/DS/00613.html

Article on medication overuse/rebound headaches http://www.achenet.org/articles/38.php

Good general CH diagnostic/treatment information with links to good sources of CH specific information http://www.rnweb.com/rnweb/article/articleDetail.jsp?id=109931

Typical UPMC article - Brief do’s/don’ts and reference to abortive/preventative treatments for CH http://headache.upmc.com/ClusterHeadache/Treatment.htm

Brief article CH symptoms/treatments
http://www.dizziness-and-balance.com/disorders/central/migraine/cluster_headache.htm

Not an article but in includes a user input 1-10 rating scale on the effectiveness of Vicodin etc. (Hydrocodone; Acetaminophen) in treating CH http://remedyfind.com/rem.asp?ID=16026

General headache article/includes CH, covers rebound H/A, Narcotics and the need to treat underlying causes http://www.milwaukeepain.com/headaches.html

Two very good online prescription drug reference sites to research the meds. from these articles
http://www.nlm.nih.gov/medlineplus/druginformation.html

http://www.drugs.com/

Tom

Title: Re: I do not think
Post by BarbaraD on Mar 17^th, 2006, 8:34am

Tom,

I don't know where it is, but for years (or years ago) we've been proving that analgesics cause rebounds. Neuros will tell you that.

Darvocets have analgesic in them. And they will cause rebounds.

Sometimes I take 3 Excedrin with Coffee to abort (under a Kip-5) but I have to be very careful not to do it often.

Very few CHers are helped by narcs (there are some exceptions). Most of us use vaso-constrictors to abort.

But drugs like Vicodin, Darvocet and the likes have been proved to be mostly useless in treating CH.

Hugs BD

Title: Re: I do not think
Post by CHTom on Mar 17^th, 2006, 8:43am

on 03/17/06 at 08:34:46, BarbaraD wrote:

Barb, analgesics may cause rebounds in regular headaches, but clusters are a whole different ballgame. To say that narcotics cause "rebounds" in CH and that it has been known for years but not being able to cite the source doesn't quite do it. SOME neuros may say that they cause rebounds, but not all do and it needs to be backed up by more than one article that was published somewhere, someplace, some time ago.

Title: Re: I do not think
Post by E-Double on Mar 17^th, 2006, 8:47am

You really have to be on an analgesic for some time consistently and continuously to get the bone crushing REBOUND.

It sucks

Educate your doctor.
Empower yourself!

Title: Re: I do not think
Post by burnt-toast on Mar 17^th, 2006, 9:01am

I agree with your assessment Barbara. Narcotics are not the way to go but I guess everyone has to choose their own path (or poison if you would).

Many studies agree that narcotics have little value in treating our disorder and may in fact lead to more problems. However there is a consistent resurfacing of this issue and some feel that by treating the symptom -"Un-Godly" pain they find relief. About 11 years ago I was doing the same thing - but by maintaing a good H/A journal it became apparent I was barking up the wrong tree and getting nowhere in the treatment of my condition or finding real relief.

With my Neruos. guidance I've experimented extensively with abortives/preventatives for the last decade and tracked the effectiveness of each treatment/combination/dosages/medication schedules.

Guess what - progress in the form of reduced frequency of attacks (not perfect) and reduced severity in most attacks (again not perfect) and for the last 6 weeks remission of what has been a chronic condition.

Most if not all research indicates that abortive/preventative treatments are not 100% effective but are the most effective treatments currently available.

But good record keeping is needed to really determine what is working and what is not and how to adjust treatment to find the best relief.

Tom

Title: Just Curious
Post by Kirk on Mar 17^th, 2006, 9:24am

on 03/16/06 at 20:16:51, chewy wrote:

My mind is thoroughly made up. Narcotics are known triggers but if it helps then occasional usage is fine.

Could you justify that statement for me please. I have been taking Methadone and Oxycodone daily for 6 months, and they have not tiggered a CH yet. Before that I have taken Morphine, Fentanyl and several other heavy pain killers finding the right mix for chronic pain. So far they don't do a damn thing for CH. Nor do they trigger them.
In the 6 years between the old board and the new board, no one has mentioned to me that narcotics has been a trigger for them either. [smiley=twocents.gif]

You just seem so adament about it.

[smiley=smokin.gif]

Title: Re: I do not think
Post by rapunzel on Mar 17^th, 2006, 9:54am

I cant reply to the narcotic usage- because I havent found anything that really works yet...however I have discovered something that i will NEVER take again.

I posted yesterday that the doctor prescribed me depakoteER and topamax.
I took them last night.
I slept all night long. no head pain at all. I was like in a coma. I went to bed at 8:30. I woke up at 3:30 am totally disoriented.
I tried to read, could not make any sense of anything.
I slept some more. I have been an emotional mess- cried, I have snapped at my children, argued with my husband, had some weird pain between my eyes, across the bridge of my nose...my head has been all groggy- foggy
I have spent hours trying to clear my head because I have to go to work in an hour. Im still not right, but I showered, feel better than I did, ate some cereal and at least i can make some sense out of some posts now.. I definitely have a hangover type headache. One thing is for sure, I will never ever take those pills again. Better to suffer from clusterpain than be a vegetable trying to function.

i think.

Title: Re: I do not think
Post by burnt-toast on Mar 17^th, 2006, 10:16am

on 03/17/06 at 09:54:28, rapunzel wrote:

Don't give up on finding treatments that work for you. You're Neuro. went for some of the big guns (depakoteER and topamax) in treating your CH. Based on side effects, etc. I've stayed away from these two and never agreed to take them.

I'm reposting these links. Please take time to look through them and consider all of the treatment options available. Then use the Prescription Drug references to see what you can be comfortable with and then work with your Neuro. to develop a treatment plan that you both agree on.

Here are a few online resources - CH - Diagnostic, Treatments/Medications, Rebound H/A, Narcotics use.

Very well written/illustrated article apparently done privately by someone close to our little CH hearts http://www.miqel.com/clusterheadaches/clusterheadaches.html

Good article covering CH diagnosis/treatment/medications, etc.
http://www.umm.edu/patiented/articles/what_treatments_cluster_attacks_00 0099_8.htm

Good general CH diagnostic/treatment/medications brief reference to opiates and valid uses http://www.emedicine.com/EMERG/topic229.htm

General headache descriptions/includes CH - briefly cover rebound headache/dependency issue and treatment options http://www.achenet.org/resources/headfact.php

CH specific reference diagnosis/treatments brief reference to little value in opiates
http://www.touchbriefings.com/pdf/1239/rozen.pdf

Good article on rebound headaches/causes, symptoms, prevention
http://www.cnn.com/HEALTH/library/DS/00613.html

Article on medication overuse/rebound headaches http://www.achenet.org/articles/38.php

Good general CH diagnostic/treatment information with links to good sources of CH specific information http://www.rnweb.com/rnweb/article/articleDetail.jsp?id=109931

Typical UPMC article - Brief do’s/don’ts and reference to abortive/preventative treatments for CH http://headache.upmc.com/ClusterHeadache/Treatment.htm

Brief article CH symptoms/treatments
http://www.dizziness-and-balance.com/disorders/central/migraine/cluster_ headache.htm

General headache article/includes CH, covers rebound H/A, Narcotics and the need to treat underlying causes http://www.milwaukeepain.com/headaches.html

Two very good online prescription drug reference sites to research the meds. from these articles
http://www.nlm.nih.gov/medlineplus/druginformation.html

http://www.drugs.com/

Tom

Title: Re: I do not think
Post by E-Double on Mar 17^th, 2006, 10:16am

on 03/17/06 at 09:54:28, rapunzel wrote:

Better to suffer from clusterpain than be a vegetable trying to function.

i think.

That is exactly how I feel!

I need my wits!

Title: Re: I do not think
Post by chewy on Mar 17^th, 2006, 12:51pm

Quote:

Everyone can make up their own minds about the best treatment option(s) for themselves.

Absolutely.

I digressed by even responding to Pinkfloyds outburst. Forgot what board I was on.

Sorry about that Rapunzel

Title: Re: I do not think
Post by Melissa on Mar 18^th, 2006, 6:35am

rapunzel- Have you talked to your doctor about Oxygen (O2)? See if you can get him/her to prescribe it for you with a non-rebreather mask. For more info. on O2, click on the button to the left of the screen that says "oxygen info".

If he agrees for you to try it, and it kills an attack within 20minutes, then I'd also consider purchasing a clustermasx (which will make it work even faster).

Take care,
:)mel