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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Pain Medications
        
(Message started by: JaseOH on Aug 7^th, 2005, 11:00pm)

Title: Pain Medications
Post by JaseOH on Aug 7^th, 2005, 11:00pm

OK. First of all I am new to this board and I havent stopped reading it since I found it. It is so emotional finally finding people that understand WTF I am going through. I ahve been accused of drug seeking, hypocondriact, overreacting, and a whimp. Thanks for understanding. In case you dint read my other post, I have been without a serious cluster (more than two or three episopdes in a week) for over two years. BUT the beast is back and making up for lost time. I dont have a neurologist yet here, and after being diagnosed for nine years my GP says, "I dont hink you have Clusters" Time to get a new GP. Anyways. Iused to take Stadol for pain, but it seems harder to get the drug stores dont carry and the docs dont perscribe. Like I said actually I havent had to us pain killers in over Four years but this episode is bad. OK I am rambling.. Any pain killers work, I amy taking LOTS of Ibuprophine (spelling) now, and my stomach kills. I hope this rant made sense. Just looking for a pain med that works.

Jason

Title: Re: Pain Medications
Post by BobG on Aug 7^th, 2005, 11:32pm

Quote:

Any pain killers work, I amy taking LOTS of Ibuprophine (spelling) now, and my stomach kills. I hope this rant made sense. Just looking for a pain med that works.

Hello Jason. Your story has been told hundreds of times on this board. We all have tried anything and everything to stop the pain. Including some very powerful pain killers. But, the truth is, pain killers don't work on clusterheadaches.
I saw your list of meds over on the general board. One question about your Oxygen use…Did you use a non-rebreather mask and how high was the flow rate?
Sounds like you need a good neurologist with knowledge of cluster headaches. Please let us know.

Title: Re: Pain Medications
Post by StressFree on Aug 8^th, 2005, 12:19am

Most pain killers that I've been on quit working completely within a few days or a week at most. Then the attacks are even worse (doesn't seem possible to be worse - hay?). You might try alternating a decent pain med every other day with a good abortive. Some effective abortives are caffergot/ergotamine type drugs or the triptans. Maxalt tabs are a triptan that worked well for me recently. Like Imitrex, it's expensive stuff. Some concern about heart trouble since these constrict the blood vessels quite thoroughly. Another perscription drug that has helped me in the past is Meprobamate (Equanil or Equagesic). It is a mild anti-anxiety agent that the doc may not mind perscribing. If you are at your wits end, it may help you to feel somewhat normal again! I wouldn't mix it with anything else though - it may cause psycological problems (take as directed). Best of luck to you, Rich

Title: Re: Pain Medications
Post by marty on Aug 8^th, 2005, 5:06am

Hi Jason

I don't have an answer for you, just a little bit of advice; Usually, pain meds do not work on clusters. There are some that do work, but the risk of addiction to these meds is very high.

I am not saying that you are a drug seeker (so don't get me wrong here).

When you get hit, there is only one thing on your mind; for the pain to stop and stop NOW. If a pain medication (narcotic such as demorol, Diladid etc) is something that stops the pain (at the ER), that will become your "weapon of choice" simply because it works and it works fast.

You may go to the ER once or twice per week in the beginning but slowly the ER visits will increase. Not because of the clusters per say, but because you know (and your body knows) that after you are given the pain med, the pain will go away and you will even be able to sleep for a couple of hours.

Slowly the addiction will sneak up on you - you will not know this but changes are taking place and the "feeling good" feeling that you get after the meds are administred will become a reason for increased and seemingly uncontrolled cluster attacks.

When reaching this point, you have done nothing wrong - you are only trying to get rid of the pain - but the doctors will cut you off. This will be pure hell on wheels :-/ since you may not realize that you have become addicted and that, at some point, the cluster attacks have become a manifistation of need for the medication - not a means of stopping the attack - that becomes secondary.

Breaking an addiction to pain meds is scary and it can be dangerous.

Jason, it took me a while to write this since I did not want it to sound like you are looking for drugs and I am not saying that. I just had to describe a little bit about what can happen (not saying that it will) and that you don't want to be in such a situation.

As I said in the beginning, I don't have an answer for you. We are all different in how we deal with CH but I do believe that pain medication is not the way to go. As far as I can understand, you are episodic. Seek the advice of some of the people here that are chronic - some have been chronic for years and they are the true survivors since they have learned ways to help them deal with this.

Best wishes

Marty

Title: Re: Pain Medications
Post by Svenn on Aug 8^th, 2005, 5:21am

Hi there Jason

We all have been there-done that.
If your GP or neuro refuse lissen,just kick him the hell out and get a new.

Main thing is to get a proper diagnose

I cant say what will work for you,but i will add my medical "coctail" that have done miracles for me.

6-7X120mg verap "retard" daily
Oxygene with a nonrebreathermask at the flow 12 LPM
Imitrex shots if O2 dont kick in or combined

Prednosolone 80mg daily for 10 days then tapering 5g every 4 days "be ware of the sideeffects"down to 0

I believe the best thing is to talk to a neuro about this instead of a GP

If that dont help there are a few other things that will help.
But thats another story as Marty so well said it

Lets hear how things are going there for you

Best from Svenn

Title: Re: Pain Medications
Post by jcmquix on Aug 8^th, 2005, 5:57am

Welcome Jason...

Sorry you are here, but its nice to meet you. You are in the right place for CH, this site has the most information and the best support people in the entire world.
I found this place after yrs of CH and not getting the correct DX, I was finally DX about 5yrs ago with CH, found this site 3yrs ago, I didn't sign in to about 2 months ago, after being PF for almost 3yrs. I started this last cycle on June 1st.

I have not bothered going to an ER in over 6yrs, the reason was that they had no clue how do deal with CH, I still don't think they have a clue to this day. They always thought that I was there looking for a DRUG fixx. Usually by the time I got signed in at the ER and got to see a Dr, hours later, the CH was usually gone. But the Dr heard that I was thrashing around for a few hrs before I seen him, but I was now acting normal (after the CH hit went away). OR They would give me a shot of Demerol, tell me I had a migrane HA and send me home, with a script for pain killers.

My real point is, I still have pain killers for various other differnet reasons (Hurt Back, Dislocated Thumb, etc..). I have never found a pain pill that will even take the edge off the CH at all, actually I found most times that any Pain Pill will make the CH worse.

I recommend that you Read, Read & Read all the info you can here, check the links to the left, find yourself a good Nero Dr (I may take a couple of times), make certain that he is interested in your CH, not giving you the latest Drug on the market.

Last but not least, Stick around here and stay informed and find a support group for when the CH is getting to you and you need someone to talk to (it helps).

PFDAN's to YOU !!!!
Charlie

Title: Re: Pain Medications
Post by Bob_Johnson on Aug 8^th, 2005, 7:34am

It would be a help to your doc to print this document and use it as a tool for discussing treatment options.

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Pain Medications
Post by JaseOH on Aug 8^th, 2005, 8:55am

Thank you all. arty..I Hear you and you are right. I dont want pain killers if they dont work, and I guess what I was really asking is if anyone found one that worked. I take the answer is no. If this last longer I will go on the prednisone taper, it has worked in the psat. I dont know who asked, but yes I used high flow o2 with a non rebreather mask. works like 10 % of the time. I used to be an EMT so I would use it when I got them at work all the tiime. Well Ill stick to Imetrex I guess till one of you figure out a cure, and I think with the amount of intelligent people on this site, you will come up with a great solution. Thanks for the advice.

Marty..I almost or maybe did have problem with Stadol four years ago thats one reason I dont take it anymore, but in times of severe pain the despiration for a quik takes over my sensability. Ill just stay awake for another week till these go away

Jason

Title: Re: Pain Medications
Post by gore2424 on Aug 8^th, 2005, 9:05am

hello everyone I have been wearing a Duragesic 75ug/h (fentanyl transdermal system) pain patch for over two years now. this has been keeping my clusters at a 3-4 painlevel 24/7 and have (14) per month of 30 mg morphine pills for the bad days I have been chronic since Nov 1999 before that 16 years spring and fall only. since about 1997 I tried 67 different meds in all combos before the patch with only 1-3 weeks relief I even went as far as a operation in Mayo Clinic in Minn. they went into brain and cut the trigeminal nerve leaving the right side of my face numb forever that only gave me 3 months relief then BAMM they were back so i guess what i am saying is the pain meds have been working for me BUT remember everyone is different Terry

Title: Re: Pain Medications
Post by gore2424 on Aug 8^th, 2005, 9:09am

also i wanted to add that i used stadol for about 6 months but i took myself off it i was using almost 1 bottle a week making excuses to get more at work i loved the rush it gave me even when i was not getting hit hard so i told the Neuro no more because i was abusing it big time Terry

Title: Re: Pain Medications
Post by unsolved1 on Aug 8^th, 2005, 2:48pm

on 08/08/05 at 05:21:45, Svenn wrote:

Prednosolone 80mg daily for 10 days then tapering 5g every 4 days "be ware of the sideeffects"down to 0

The key words here are: "beware of the side effects" ... because at this dose, you WILL experience side effects!

UNsolved

Title: Re: Pain Medications
Post by Karla on Aug 8^th, 2005, 8:47pm

I u sed stadol and loved the way it kicked but but seriously it took more and more of it to do the same thing it used to do and I would sleep for hours after taking it. I tried over 35 different meds and nothing worked to prevent the ch. Until I found the duragesic patch 50mcg. I have 0 pain all the time for last 2 years. It has been awesome. I have had no side effects and don't feel high from it. To me it is a miricle drug!

Title: Re: Pain Medications
Post by Margi on Aug 10^th, 2005, 10:32am

on 08/07/05 at 23:00:06, JaseOH wrote:

I have been without a serious cluster (more than two or three episopdes in a week) ..... my GP says, "I dont hink you have Clusters"

um...and then in a later post you say you'll stay awake for a week until they go away.

I think your GP could be right. 2 or 3 a week is close to being a remission for most sufferers. upwards of 2 or 3 a DAY is a cluster cycle. And we ALL wish they would go away after only a couple of weeks.

How long are your attacks lasting, Jason? What does your body tell you to do when you have a headache?

Title: Re: Pain Medications
Post by E-Double on Aug 10^th, 2005, 11:32am

I have had weeks here and there with barely any full blown activity.

I'm still in cycle though.....they always return.

Who knows ;)

Anyway, I haven't found any "pain med" to be helpful with the exception of when I was hospitalized and I got 4 shots of dalaudid......whew......narc withdrawl for a week but gave me a break for a few days.

Title: Re: Pain Medications
Post by CHTom on Aug 11^th, 2005, 2:50am

I would worry more about the effects of long-term use of high doses of ibuprophen than opiates. Ibuprophen can cause serious, permanent damage to the stomach and liver when excessive doses are used for long periods of time. Less than 1% of people who take prescribed narcotics, for a long period of time for chronic pain, become addicted in the classic meaning of the word. They will become dependent, but that is generally not a serious problem provided that they continue to work with their doctor and take only what is prescribed. In addition to ibuprophen, overuse of aspirin and Tylenol can also cause serious medical problems, some life threatening. Do be careful.

Title: Re: Pain Medications
Post by allan_r on Aug 12^th, 2005, 11:19pm

In regard to the cycle- I have the three to five days per week a cycle-- last year it was every fourth week.

Cycles are cycles. Unfortunately some are short.

allan r

Title: Re: Pain Medications
Post by jcmquix on Aug 12^th, 2005, 11:36pm

on 08/11/05 at 02:50:35, CHTom wrote:

I would worry more about the effects of long-term use of high doses of ibuprophen than opiates. Ibuprophen can cause serious, permanent damage to the stomach and liver when excessive doses are used for long periods of time. Less than 1% of people who take prescribed narcotics, for a long period of time for chronic pain, become addicted in the classic meaning of the word. They will become dependent, but that is generally not a serious problem provided that they continue to work with their doctor and take only what is prescribed. In addition to ibuprophen, overuse of aspirin and Tylenol can also cause serious medical problems, some life threatening. Do be careful.

Please do not take this the wrong way, but long term use of even Narc's is not a good idea, they can cause just as many problems as the OTC stuff. None of these are good for long term use.

As from what I understand, myself included in this, none of the present day NARC's can even touch a CH, In my experience when I have tried them, they have made the HA worse and last longer. I found them to be more of a trigger, than too provide relief.

Sorry I do not want to start a debate, I have had to use alot of the Perscription Narc's and had to deal with alot of differnt issues from them as well as the OTC stuff.

Just BEWARE of the side effects of any meds you take, if you have a bad reaction, discuss it with you Dr right away.

OK Bye.. Sorry Again...

PFDAN's to YOU !!
Charlie

Title: Re: Pain Medications
Post by CHTom on Aug 13^th, 2005, 3:37am

No debate, Charlie and no offense taken-just different points of view. PFDANs, whatever you use to ease the pain.

Title: Re: Pain Medications
Post by jcmquix on Aug 13^th, 2005, 9:03am

on 08/13/05 at 03:37:01, CHTom wrote:

No debate, Charlie and no offense taken-just different points of view. PFDANs, whatever you use to ease the pain.

Amen too that I have been there too....

Just be careful with what you decide...

Hope you get relief Soon

PFDAN's to You !!!
Charlie