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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Pain medicines that work?
        
(Message started by: fightguy on Aug 22^nd, 2007, 6:47pm)

Title: Pain medicines that work?
Post by fightguy on Aug 22^nd, 2007, 6:47pm

I have had clusters for around 10 years now, and I have tried just about every medication/treatment available. Basically,I have pretty much just come to the conclusion that I am going to have to live with this forever unless by some miracle they stop. Until recently, I had been taking Percocets 10/325 for pain in conjunction with Imitrex Nasal Sprays, and they were pretty effective in bringing the pain down from 8-9 to around 4-5. With this most recent cluster, which has lasted almost 3 months, the percocets no longer seem to be helping as much. Does anyone have any suggestions as to what I can use to help alleviate the pain during my headaches? What has worked for you?

Anyone used fentanyl, dilaudid or opana for clusters?

Title: Re: Pain medicines that work?
Post by Jonny on Aug 22^nd, 2007, 7:07pm

Opiates dont do shit for CH!

Try the Imitrex injections and get on prevenatives.

You tried 02?

Title: Re: Pain medicines that work?
Post by fightguy on Aug 22^nd, 2007, 7:16pm

on 08/22/07 at 19:07:31, Jonny wrote:

Opiates dont do shit for CH!

Try the Imitrex injections and get on prevenatives.

You tried 02?

Perhaps they don't help with yours, but they definitely decrease the pain to a more tolerable level for me. I have used the Imitrex injections in the past and they don't seem to work any better than the nasal sprays for me. I've also used oxygen for many years but it's never helped abort the headache for me, rather it seems to help me keep from hyperventilating from the pain.

Title: Re: Pain medicines that work?
Post by vietvet2tours on Aug 22^nd, 2007, 10:56pm

on 08/22/07 at 19:16:12, fightguy wrote:

Percs don't work.

Title: Re: Pain medicines that work?
Post by UN solved on Aug 22^nd, 2007, 11:50pm

Fentanyl isn't any good for clusters either. (Actiq)

Narcotics will just make you drowsey, feeding the beast, only to make it harder to beat.

It's NO good ! Find another way and forget about the narcotics !

Goodluck

UNsolved

Title: Re: Pain medicines that work?
Post by nani on Aug 23^rd, 2007, 12:39am

IV morphine didn't even touch the pain during a particularly bad ER visit. I was having back to back attacks. I recently had surgery, for another condition, and the dilaudid they gave me for pain actually triggered a CH episode for me. :-/

Oxygen, imitrex, zyprexa ... even Red Bull have a much better track record than opiates.

Keep reading here, and at the OUCH site (link at left) it has lists of meds and treatments. Look it over.

pain free wishes, nani

Title: Re: Pain medicines that work?
Post by hornedone on Aug 23^rd, 2007, 12:53am

I think that when most of us were finally diagnosed we were informed, and perhaps even experienced that opiates were relatively useless. For me, those that I have tried (hydrocodone 10 and percs) can't touch a KIP 7 or above, but can make anything below tolerable enough for me to deal with people.

Unfortunately, there is no "uniform" treatment that works for everyone.
I mentioned in an earlier thread that after 3 1/2 years my dopamax is starting to wear off (pretty damn fast too). >:(
I've been on verap/prednisone (no luck), had the occipital nerve block (might have made it worse), and at the recommendation of others will push for lithium on my next visit, however if that doesn't work I would not be opposed to try other methods such as fentanyl patches, etc. I am even seeing a PM doc at the recommendation of my Neuro.

PFDAN to all!

Title: Re: Pain medicines that work?
Post by MR_FLOOR on Aug 23^rd, 2007, 2:17am

A couple of years ago I had a severe throat infection.I went to the ER .To make a long story short they omitted in the hospital.Before I got a bed I got hit I felt a monster coming on so I asked if they had any Imitrex they said they were going to give me Morphine the nurse said "if that don't get rid of your headache nothing will"I told her it wont work.Well sure enough I was stoned out of my mind from the Morphine with a kip 10 finally they gave me the Trex.The Morphine did not even phase the CH.

Dave

Title: Re: Pain medicines that work?
Post by UN solved on Aug 23^rd, 2007, 6:33am

fentanyl patches or Duragesic patches are still not well suited for quick, strong action that a cluster attack needs. You may get a 'buzz', but as far as real cluster pain relief, I don't see how it could be of any benefit and probably will just cause more problems in the long run.

Goodluck

UNsolved

Title: Re: Pain medicines that work?
Post by soulroach on Aug 23^rd, 2007, 6:58am

Unfortunately, I agree with the statements being made here, in the fact that narcotics just don't work! I wish it were so simple but it's not. In fact I swear they actually trigger a HA. For me there is no substitute for 02 and Immitrex injections. They are the only weapon I've found to date that actually helps.

Title: Re: Pain medicines that work?
Post by Bob_Johnson on Aug 23^rd, 2007, 8:41am

We too rarely discuss the need for technique in using meds. I suspect that the triptans are not as effective as they can be IF we delay taking them until the attack is well developed. Really quite important to get them into action before the attack has peaked.

Technique is especiially important with Imitrex spray.

Title: Re: Pain medicines that work?
Post by hornedone on Aug 23^rd, 2007, 11:52pm

That is a great point, and a rather expensive one too. Quite a few times I've held out as long as I could in using the triptans, and then when I did, the damn thing started to go away on it's own. Knowing that there was no way in hell it was working in 1-2 minutes or less, at least I didn't think so.

There is so little room for error (esp. for those without insurance), and it really bites.

I have basically gotten to the point where if I feel like I'm going to start yelling and losing it at work (new job btw) in it goes.

Title: Re: Pain medicines that work?
Post by gore2424 on Aug 24^th, 2007, 12:32am

hi all thought about this for hours before I post this and I want to state first that everyone is different when it comes to meds I am 52 had clusters every spring and fall since I was 27 in Nov. of 1999 I got a h/a that wouldnt go away was told I went chronic now before 2002 I tried over 67 different meds in many combos went to ER 3-4 times a month about once a month hospital stays for DHE treatments I was suicidal missing work too much so in May of 2002 I went to Mayo clinic in rochester Minn. to have the gamma knife done but the DR there said no good results but had done 5 trigeminal ryzotomy where (2) complete recovery (2) 70% better and (1) 50% better so came home talked to wifey and decided to have it done well i only got a little over 4 months relief and bamm came back in full force so tried more diferent meds and finally found some thing that has worked for me up til this day I wear a fentynal 75 pain patch and my neuro allows me 12 per month of the 10mg morphine shots for the bad ones I stay at a 3-4 pain level 24/7 and take a shot as soon as i feel it going up and it puts it back down to a 4-5 everytime I also have O2 which works 1/4th of the time too. So i just wanted to tell you what is working for me and has for the last over 4 years I still can function with life take care of my dad and even drive 20 minutes after a shot without any problems once again i want to state that everyone is different with meds and please excuse my spelling Terry

Title: Re: Pain medicines that work?
Post by minipaws96 on Aug 24^th, 2007, 8:58pm

I used Stadol for a few years, but as stated by the others, it only dulls the pain a bit. I am in a cycle right now and am seeing Neuro on Tues. He started me on Neurontin. I haven't seen that mentioned around here, so I imagine it is useless...any comments?? The intranasal lidocaine interests me. I used to work with a doctor in GA who injected it to himself (I guess in his head) when he got migraines. Any experiences with nasal lidocaine? I have been pain free for almost 2 years. Its the longest I have ever gone and I had just been thinking perhaps I am getting too old (55) for the clusters! Oops, my bubble got burst. Thanks for any info on the neurontin and the intranasal lidocaine....Sherry (Ohio)

Title: Re: Pain medicines that work?
Post by Jonny on Aug 24^th, 2007, 9:09pm

on 08/24/07 at 20:58:06, minipaws96 wrote:

He started me on Neurontin. I haven't seen that mentioned around here, so I imagine it is useless...any comments??

Yeah, keep reading!....LOl ;;D

Title: Re: Pain medicines that work?
Post by LindsayLoo on Aug 25^th, 2007, 2:38am

I agree and disagree.

I take 4 mg of Hydromorphone (Dilaudid) during my peaks. I know right when to take it since my attacks are by the clock and it seems to alleviate some of the pain, maybe to a KIP 4-5 instead of a 8-10. I do this very sparingly though. I also take, again sparingly, OxyCodone 5 mg (straight perc, no acetaminophen) on my worst daytime attacks but those seem to do hardly anything at all. <shrugs> I know that when I was in the hospital they gave me 4 mg IV Dilaudid, it knocked out the beast but within minutes it gave me some horrific rebounds, I actually broke the hospital gurney from using the rail to kick off on while writhering in pain so the hospital not knowing what to do (not exp'd w/ CH's) gave me MORE dilaudid. It was a horrible experience. So for me I guess it's hit or miss. I hate narcotics cause for some reason they make me super hyper. Kind of like a meth-y state (or so i imagine) but I hate the beast more.

Title: Re: Pain medicines that work?
Post by Wayne on Aug 25^th, 2007, 2:55am

hornedone wrote - Quite a few times I've held out as long as I could in using the triptans.

I think thats a common problem and it stems from the onset of the hit when you're lying there praying that it will only get to a kip 4 or so and then go away, so by the time it hits kip 5 and rising its too late. I have definitely learned not to waste time, even a hint of a shadow and down goes a Redbull, problem solved.

Title: Re: Pain medicines that work?
Post by LindsayLoo on Aug 25^th, 2007, 3:07am

on 08/24/07 at 20:58:06, minipaws96 wrote:

The intranasal lidocaine interests me. I used to work with a doctor in GA who injected it to himself (I guess in his head) when he got migraines. Any experiences with nasal lidocaine? Thanks for any info on the neurontin and the intranasal lidocaine....Sherry (Ohio)

Sherry, I use lidocaine jelly, I shoot it into my nose with a little plastic medicine syringe.

It helps but it's very messy, gooey and really just a pain in my arse but it's useful as one of my lines of defense for my minor attacks.

PFD,
Lindz

Title: Re: Pain medicines that work?
Post by minipaws96 on Aug 25^th, 2007, 4:26am

Thanks Lindsay- I am trying to compose (at 4am) from a fairly nasty hit. I have nothing here for pain (well except for some grape jelly in the fridge). Nice to know I can still keep my sense of humor tho :-) This neurontin the doc started me on a week ago doesn't seem to be working. I don't know much about that medication, but it isn't working on me yet. :o

Title: Re: Pain medicines that work?
Post by LindsayLoo on Aug 25^th, 2007, 4:49am

I hear ya. I am actually up from my last hit and can't sleep because i'm dreading my next one, which is due in about an hour and a half (it's 1:40 am here) and that is my "Nasty" one where every night I wonder if this will be the one to do me in. I'm sorry you have pain & nothing for it. I thankfully do, and I just took it, but I am OUT of oxygen, Dependable was "supposed" to be here today but didn't show. So, if you want to get technical I have no real pain meds either. if I could send you some believe me I would.

I know nothing of neurontin, I wish I could help you out there. I'm sorry. Hopefully it will start having an effect on you soon.

I' glad you have humor too, you made me smile. If you have any numbing oragel maybe you can squirt that up there...JUST KIDDING, DON'T DO THAT! lol

*hugs* Lindz

Title: Re: Pain medicines that work?
Post by nani on Aug 25^th, 2007, 10:08am

Neurontin doesn't work for everyone. It gave me some relief, but I kept having to increase the dosage. I was up to 1800 mgs a day, along with verapamil and lithium, and I was still getting hit.

Title: Re: Pain medicines that work?
Post by UN solved on Aug 25^th, 2007, 10:08am

After re-reading this thread and my replies, I though I'd write a little more to clarify my position about the use of narcotics in treating CH.

As a general feeling and a general rule, narcotics will not help in the treatment of pain for cluster headaches. However, with that said, I do believe that they're a select few group of people that do benefit from it. But, I believe the process getting to these drugs should be very strictly controlled so that 'newbies' don't go stright for the narcotics, which I think in most cases are only going to complicate the problems and/or create more problems.

I too use some narcotics when dealing with lower KIP hits. Kip 4 - 7 hits may be aborted with my pain meds, or it may just make it worse. It's a real gamble, with lots of pain riding on the bet !! I use 10mg IM injections of Nubain. I only get 10 doses every 14 days, if needed. (So they are keeping a close eye on it for me)

The Stadol NS is supposed to be very addicting and hard to get off of once you started taking it. I'd avoid it or only use in when absolutly neccessary.

As a patient, we should seek out all possible forms of relief, but narcotics use whould be way down at the bottom of the list. You should have to do stop #1, step #2, ewstep #3, and so on ans so forth.

Goodluck ppl & be careful

UNsolved

BTW, The Duragesic and Morphine patches (both) WILL kill you if you take them in an altered many for which they were prescribed. If that dose gets in you too fast, it WILL shut you down and kill you !! Never, never heat them up or chew on them ... it's just asking for a visit from the Grim Reaper !!

Title: Re: Pain medicines that work?
Post by puppylove41 on Aug 25^th, 2007, 10:14am

minipaws, my husband has been taken neurontin for 2 years now, he is up to 3600 mg. It has not helped him he is going to lower it back down why take so much if not helping. We are going to the nero this week and the headache specialist Oct 2. good luck finding what works for you.

Title: Re: Pain medicines that work?
Post by littlefoot on Aug 25^th, 2007, 10:26am

Narcotics can be useful in treating the pain of CH, but I would be very careful. It sounds like maybe you have built up a tolerance to the perc's. For what it is worth, I used narcotics, as well as everything else discussed on this board, and built my tolerance up to 6 - 40 mg. oxycontin tabs a day. That is what the doc was actually prescribing. I ended up with a hell of an addiction that lasted for years and really not that much relief in using the oxy's. It became a real nightmare, as if the ch weren't enough of one. I ended up going on methadone to come off the oxy, which turned into just one more nightmare. If I had it to do over again, I wouldn't go there. Please be careful!!!!

littefoot

Title: Re: Pain medicines that work?
Post by vietvet2tours on Aug 25^th, 2007, 11:39am

on 08/25/07 at 10:26:47, littlefoot wrote:

Sheeeit all ya do is end up a soup sandwich with a kip-10 cluster.

Title: Re: Pain medicines that work?
Post by Kevin_M on Aug 25^th, 2007, 5:30pm

on 08/25/07 at 10:26:47, littlefoot wrote:

Good informative post, thanks.

Title: Re: Pain medicines that work?
Post by minipaws96 on Aug 25^th, 2007, 11:56pm

Lindz- you made me laugh too!, boy we need some laughs for sure. To the others who responded about the neurotin, thank you! I am only at 900 mg, so I imagine it may go higher. Truthfully, after 37 years of clusters, and some very active prescribing from a neuro about 10 years ago, I have come to the realization that you just have to ride out the storm. I sympathize with those who have these daily for years. I cannot imagine years of this. My longest was 2 months straight and I was exhausted. I had to work everyday and my mind was usually mush after a night of the hits and the squirts of the stadol. I will say, as soon as the cycle was over, I was able to set the stadol aside. I would be very scared to take oxy. My husband was on it after his motorcycle wreck and that is some wicked stuff. Oxygen never worked for me, but it was 10 years ago when I used it and perhaps they have perfected it some. Seems like lots of folks use it now. Thanks for that info also. You have all been helpful, and I appreciate your feedback. I am about to go to bed, its almost midnight, I will be back up in about 90 minutes, take a xanax and hold the hot washrag on the right side of my face.

Title: Re: Pain medicines that work?
Post by purpleydog on Aug 26^th, 2007, 7:20am

I was on neurontin too, at 2400 mgs a day, and all it did was erase my short term memory, and made me into a zombie. The topomax didn't do that to me. Narcs aren't real helpful for most people, though there are a few they do help. Fentanyl patches and morphine can help, but they don't kill the hit, only make it a bit more bearable.

Anyone I've known who is taking narcs for CH or any other chronic pain, hates the fact they have to use them to control the pain. Be sure to follow your docs orders to a T, and ask questions if you aren't sure how to use something.

Title: Re: Pain medicines that work?
Post by Lotus on Aug 26^th, 2007, 8:04am

Narcotic doesnt stop the pain of CH because its nerve pain. It only reduces the pain level a few notches. However, as CHers get hit so often, frequent uses of narcotic will quickly cause an addiction which is very hard to get off. Being addicted to narcotics will bring you another set of problems, some may be worse than CH itself. Be very aware of what narcotics can do to your body, both physically and mentally before embarking on its use.

My husband was on Neurontin and he was up to the maximum dose of 3600 mg per day. The last combo that worked the best was Neurontin, Verapamil, Amitryptiline and Tegretol as preventives, and oxygen, zyprexa or imigran ( imitrex) as abortive. It did help reduce the intensity of the hits but did not stop all the them. However, the hits were fewer and slower to build up to he had time to get on the oxygen and the red bull to abort more than 80% of them. The ones that broke through were then killed with either zyprexa or imigran.

In the earlier days while he was still searching for preventives that would work for him, he did have some morphine injections to help cope with those Kip 10. However as soon as he started to ask for more ( ie showing the first sign of dependency ) our neuro and pain specialist stopped all narcotics, yet he coped fine and finally found the right med combo that kept the beast mostly at bay.

Wishing you painfree days and nights. Praying that relief will be here soon.

Annette

Title: Re: Pain medicines that work?
Post by fightguy on Aug 28^th, 2007, 3:45am

I appreciate all of the replies. At my last visit, my doctor brought up methadone as an effective treatment for the pain. My research is showing mixed reviews. Some say it is a bigger nightmare than other pain meds and I also worry that it won't be as effective at helping reduce the pain.

The last thing I want to do is trade in my headaches for a narcotic addiction. Methadone sounds like nasty stuff to me

I am thinking about asking to switch to dilaudid, which I have been hearing many good things about

Title: Re: Pain medicines that work?
Post by fightguy on Aug 28^th, 2007, 3:47am

and just to clarify, this has NOT been my first line of treatment. This is what has worked the best for me out of the dozens and dozens of treatments and combinations of drugs/ oxygen/etc that I have tried over the past decade

I would highly recommend exhausting all other avenues before relying on narcotics to manage the clusters.

Title: Re: Pain medicines that work?
Post by Karla on Aug 28^th, 2007, 11:51am

My dr put me on methadone after the failure of oxycodone. It worked great to stop the pain but I slept all day long and was in a daze. I had to go off of it and that is when they put me on the fentanyl patch of which has kept me pain free for 7 years.

I would be very cautious with dilaudid I overdosed on it in the ER. I had a compationate dr who gave me dilaudid 4mg. It for some reason didn't abort my migraine as usual. He then said I can either give you 2mg more or send you home in pain still. So I said give me the 2 mg more please. I don't remember leaving the ER but I walked out accordingly. My husband undressed me when I got home and put me to bed I was so out of it. He was downstairs watching a movie when the phone rang. He came upstairs and answered the phone across from our bedroom. He looked at me and I was blue and not breathing. He called 911. They said another 15 min. and I would have been nonrecoverable. They gave me narcan and took all the dilaudid out of my system and took me back to the ER. They thought I did it to myself and I told them the dr gave it to me they were surprised. The dr was waiting at the Er door when I arrived. He exclaimed, "She walked out of here ok"! So go lightly with narcotics and be very careful. Even under a drs orders they can still cause lots of grief.

Title: Re: Pain medicines that work?
Post by fightguy on Sep 5^th, 2007, 3:10am

Update: I tried dilaudid. They seem to work pretty well, but they are much slower to kick in than the percocets and they make my breathing feel really shallow and somewhat difficult. When I went back to sleep it made me scared because my breaths didn’t seem to be sufficient and I kept waking up feeling like I wasn’t getting enough air. I don't think I will be taking those again. The risk doesn't seem to be worth it