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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Something that is working
        
(Message started by: Roxy on Mar 6^th, 2006, 3:44pm)

Title: Something that is working
Post by Roxy on Mar 6^th, 2006, 3:44pm

I know this isn't a solution for everyone, and some people aren't going to like that I am posting about this...but, here goes.

They are refusing to do a knee replacement on me, because I am too young. I have never used any pain medication for my knee in the 30 years it has been destroyed. My doctor started me on pain medication for the knee. It was either take the meds or not walk or sleep because of the pain.

He put me on Ultracet (Tramadol/APAP 37.5mg/325mg tabs). The instructions are to take one every 6-8 hours. I am taking one every 12 hours.

It immediately had an effect on my head, but I still had some breakthroughs (maybe 3-4 daily, and up until Saturday, I was still doing daily RC seeds too). I have been on the stuff for 10 days now, and the last 5 days have been totally PF.

There is no "narcotic high" with the med. And, after looking at the side effects online compared with the side effects of triptans.....the Ultracet seemingly comes out as the better med to take.

Has anyone else taken this med, and did it help your head?

Rox

Title: Re: Something that is working
Post by Dragnlance on Mar 6^th, 2006, 3:51pm

I can tell you, that thru the hundreds of docs I went thru, that all perscribed pain killers, I have tried a ton of them. I even have some Darvacets in my med cabinet from 4 or 5 years ago.
All they ever did was mess up my mind. Sometimes towards the end of a hit, they would knock me out so I could catch up on sleep, even if it was drug induced.
As for the pain... nothing worked, nothing slowed it down, the pain was still there just as monstrous as always.

Sorry.

Lance

Title: Re: Something that is working
Post by Roxy on Mar 6^th, 2006, 4:13pm

I have never tried narcotics for my ch, and I never would. I have never run to the emergency room for my ch, because all they do is fill you full of narcotics.

I have no choice but to take the Ultracet. It is either take the medication that enables me to walk, or go to a wheelchair.

All I am saying is that I never expected this medication to affect my head. I don't ever, ever (without triptans or RC seeds) have a PF day.

This is a very unusual and unexpected side effect of a med that I now have no choice but to take. And so far, it hasn't messed my head up (at least that I can tell), Topomax is the clear winner in that department.

I AM NOT ADVOCATING THE USE OF NARCOTICS FOR CH.......I am just explaining what has happened with this medication in relation to my ch's.

Modified to add.....Don't kill me Linda..... ;;D

Title: Re: Something that is working
Post by LeLimey on Mar 6^th, 2006, 5:01pm

Roxy I use Tramadol and dihydrocodeine (NOT at the same time!) for pain caused by a wafty hip, a skanky spine and other bone problems. I have still gtten hit throughout taking both so for me they don't work for CH, it could be that co-incidence is playing a part or it could be that they are working for YOU.. whatever the answer is I hope you continue to get a load of pain free time because you deserve it! (Check with CB'ers though because I've detoxed off both before dosing in the past)
Helen

Title: Re: Something that is working
Post by Linda_Howell on Mar 6^th, 2006, 5:17pm

Quote:

Modified to add.....Don't kill me Linda.....

I see that my reputation on anti-narcs has preceeded me. ;)

Rox, I totally understand and I know how much pain you've been in with that knee. If a side-effect is for you being PF for 5 days......sheesh, I'll take it myself. ;;D

Linda

Title: Re: Something that is working
Post by Karla on Mar 6^th, 2006, 5:35pm

It's about time you got some pain relief! What a wonderful bonus! I am happy for you!

Title: Re: Something that is working
Post by Roxy on Mar 6^th, 2006, 6:42pm

on 03/06/06 at 17:17:44, Linda_Howell wrote:

being PF for 5 days......sheesh, I'll take it myself. ;;D

Well, I'm hoping it lasts longer than five days, but knowing my head, I'm betting I will develop a tolerance to the drug, and my head will bust through and pay me back in spades.

But it is damn nice while it is lasting.... ;;D

I honestly don't know what to do with myself.....my knee doesn't hurt too bad, and the head is great....what the hell is going on....LOL.

Title: Re: Something that is working
Post by Lizzie2 on Mar 6^th, 2006, 8:53pm

Rox,

Glad it's helping you. I used to take Ultracet along with my Amerge, and it nailed them all every time. Dropped my constant migraine down to a 5 or so - very very helpful. I wouldn't get help from bigger narcs like percocet and the like, but the ultracet works GREAT for me.

However, I'm not taking it anymore because we started on MS Contin a few weeks ago. It hasn't stopped the CH's, but it seems like everything is much more tolerable. Not sure if maybe, just maybe, they're a little less painful. My constant migraine is down to an average of 5, and I think that's probably the biggest help of all because when the CH ends, my migraine drops back to its reasonable baseline instead of staying at the mark of unbearable - where it's been for 5+ years now.

It's really changed my life. :) My docs won't do my knee replacements either because of age. He did tell me to start pain management, and I go to PT twice a week now for SI Joint Syndrome due to my "limp" causing severe back problems. ::)

Glad you've found some help with the ultracet - I know that med has helped me a LOT over the past few years. :)

Hugz,
Carrie :)

Title: Re: Something that is working
Post by chewy on Mar 6^th, 2006, 9:16pm

Quote:

They are refusing to do a knee replacement on me, because I am too young

I dont get that one. If you need a new knee then you need a new knee. What differance does it make how old you are?

Title: Re: Something that is working
Post by Lizzie2 on Mar 6^th, 2006, 9:25pm

on 03/06/06 at 21:16:49, chewy wrote:

I dont get that one. If you need a new knee then you need a new knee. What differance does it make how old you are?

Well...as of right now, a knee replacement only lasts 10 years and you can only get it done twice. Therefore, if you're younger, you're looking at a permanent disability possibly requiring a wheelchair within 20 years. They try to postpone as much as possible based on whether or not the knee is functional at all in your current state.

My orthopedic is basing it off of whether or not the knee has started to collapse...which means it has to be incredibly painful before he replaces it. I've AVN throughout the femoral condyles and arthritis on the right tibia, however the knee hasn't started collapsing yet, so he doesn't want to replace.

Complicated, and I can see why he doesn't want the replacement right now, but it resigns a lot of us to walk around in severe pain. But our choice is find some way to deal with the pain now or get the replacement now and be very disabled when we're still young?

Kinda sucks either way... Hopefully technology will keep on improving. :)

Carrie

Title: Re: Something that is working
Post by chewy on Mar 6^th, 2006, 9:27pm

Quote:

Well...as of right now, a knee replacement only lasts 10 years and you can only get it done twice.

Didn't know that. Thanks Lizzie.

Title: Re: Something that is working
Post by Sean_C on Mar 6^th, 2006, 9:52pm

on 03/06/06 at 21:25:49, Lizzie2 wrote:

Well...as of right now, a knee replacement only lasts 10 years and you can only get it done twice.

Carrie my uncle had a knee replaced after nam and had it up till his death 8 years ago. As far as I know it never was a problem. Most recently a friend had a knee replacement. He threw that cane away and was back to work in 4 weeks.

My brother had both hips replaced at age 32, could barely walk anymore. Now he scuba dives, water skiis, downhill skiis, you name it he can do it.

Rox, I'd get a second opinion. Sounds to me like this doc either is cashing in on you or doesn't have a clue.

I'm glad your getting relief with the ch though ;)

Sean.......................................

Title: Re: Something that is working
Post by Lizzie2 on Mar 6^th, 2006, 10:13pm

Glad to hear it Sean...

I think something to consider is that they last longer in people who are less active. For me, there's no way I'd get more than 10 years out of it as I'm on my feet 8-12 hours a day.

My PT and I were just talking about how sometimes people who are older or even people who have less active jobs can have replacements last longer than 10 years simply because they're not getting the wear and tear on it...

But the overall consensus is about 10 years... not saying that some don't get more out of it than that, however.

Carrie :)

*edited to add: The 10 years is just for the knees. I don't know what they say about hip replacements as knees and hips often have fairly different outcomes for a variety of reasons.

Title: Re: Something that is working
Post by Roxy on Mar 6^th, 2006, 11:26pm

The knee replacements are good for 10-15 years depending upon how active you are, and I am (or would be after the replacement) pretty active. It isn't the knee joint that wears out, but where the implant is attached to the bone. Your bone will give out before the steel or titanium...or whatever it is.

When they do the second replacement, they will have to take another two inches of bone off your leg to attached the implant. After the second replacement.....you're going to have a hell of limp... :o.

I've had 8 surgeries on my right knee, and one surgery on my left knee. My doctor for those surgeries was the Dallas Cowboys team doctor (he only worked with sports injuries). My present doctor comes comes very highly recommended (from nurses too....I take their recommendations as highly or higher than other doctors). But, I do understand your concern, I like having a doctor that hesitates to cut....that seems a good thing. The orthopedic doctor for the PBR Association (Professional Bull Riders) is in the office with my doctor, and he along with all the other doctors in office have checked my tests and given their recommendations also. All in all, I've had over 7 different orthopedic doctors/surgeons check my knee.

Basically, I'm not going to be skiing for awhile.

Hip replacements are different than knees, they don't take the beating that your knee does. I have a friend my age that has had both hips replaced. He is doing great. Every situation is different, and from what they tell me, the hips aren't as invovled as the knee.

Not happy that I don't get the replacement....but pretty damn happy they gave me the Ultracet.

Title: Re: Something that is working
Post by sandie99 on Mar 7^th, 2006, 4:32am

Roxy,

I hope that you're still PF! :)

Best wishes & lots PF days,
Sanna

Title: I need a NewDrug....
Post by Not4Hire on Mar 7^th, 2006, 7:49am

Thelma, my dear... glad to hear that y'all found a side effect that is not unpleasant. I take Tramadol when my "rhoomatiz" acts up (actually it's osteoarthritis in my knees) and it seems to help. The indomethacin I've been taking for probably fifteen years helps too.

I also have been told to delay the knee replacement as long as I can stand it--and for the same reasons--but what hit home most with me was .357mag Dan's experience with the surgery. He told me that he was sorry he had it, as he was in a lot more pain after than before. I realize that his experience is not "usual" but it's something to think about.

Of course chronic CHers like you have a pain threshold that's off the scale, so maybe I'm talkin' through my hat again....

Good luck with whatever you decide.....Steve

Title: Re: Something that is working
Post by Roxy on Mar 7^th, 2006, 10:31pm

Hey stranger Steve.....how's it going down south?

Well.....guess five days was all I could hope for. My head has broken through three times since I started this topic yesterday, but that is still good. Normally I would have been hit around 6-7 times in a twelve hour period....so I'm not complaining.

Hoping I just took a bad pill or something, because the knee pain was breaking through quite a bit also.

Title: Re: Something that is working
Post by Mr. Happy on Mar 7^th, 2006, 11:44pm

on 03/07/06 at 22:31:35, Roxy wrote:

Hoping I just took a bad pill or something

BAD pills make you puke or die, or somesuch thing. Maybe you got a PLACEBO. I took an anti-snot pill 3 hours ago. Almost gagged to death on post nasal deluge. Took another one after 2 hours, and was whistling Dixie 20 mintes later, dry as a bone. It could have been coincidence, but what if, WHAT IF, a placebo is thrown in on some meds, once every 20, or 30 or 100 pills......be it pain killers or decongestants. The Conspiracy is everywhere. The long term profit for a drug company would FAR outweigh any fines or penalties, as long as it wasn't a life conserving drug. Even then.......
I'm probably just addicted to decongestants.

Good luck, Rox.
RJ

Title: Re: Something that is working
Post by Roxy on Mar 8^th, 2006, 5:37pm

on 03/07/06 at 23:44:06, Mr. Happy wrote:

I'm probably just addicted to decongestants.

Hmmm......we were under the impression it was an addiction to sex...... ;;D.

Rox (who got hit five times last night damnit and will never, ever post about anything working again)

Title: Re: Something that is working
Post by michellepaul on Mar 13^th, 2006, 1:43am

Hi,

My husband is a hard to treat chronic and he takes Ultram (tramadol) to knock the headaches out. He just started on Innopran (120 mg) and it really has made a difference. He used to have to take globs of ibuprofen with the ultram for it to work, but now with the Innopran, he only has to take the Ultram.

Great luck to you with the seeds, unfortunately, they didn't work for him.

Michelle

Title: Re: Something that is working
Post by Sandy_C on Mar 13^th, 2006, 5:41pm

Roxy - My sister of the knees! I think I have found my soulmate! ;;D

Had my left knee replaced almost 9 years ago, by a highly respected ortho/sports med physician. When I was 18, had a bad skiing accident that completely tore the cartilege in the left knee into little shreds, and damaged the right knee. Had surgery that completely removed the cartilege (this was in the dark ages of medicine - because I'll be 60 in a month). For years, I did whatever I wanted, ski, dance, even taught high aerobics classes five time a week, with no trouble at all. I wore a rubber knee brace when doing these things, but so what, it worked, without pain.

Eventually, time caught up with me and at age 47 I could not even walk out to the mailbox - went down stairs sitting on my butt - needed someone behind me trying to go up the stairs) I could literally do nothing without pain. I found my doc and went in for arthroscopic on the knee. At that time he told me I was too young for replacement, but he also told me that there would be nothing else that could ever be done to that knee short of replacement. He also told me that knee replacement lasted an AVERAGE of 10 years, depending upon activity level. I lasted another 4 years, went back and told the doc it was time. Two days later, it was done (along with arthro on the right knee). The rehab and PT was brutal and painful, but I loved every minute of it, because it hurt less than it did before the replacement. Today, yes, I'm not as active as I used to be - I no longer ski, I sure don't teach aerobics, but dammit, I can still dance! and do most things that I want to. That was the best thing I've ever done and I'll be doing it on my right knee sometime in the future, without doubt. If I have to have a second replacement on the left, I'll do it - no hesitation. I got my life back and that's all that is important to me.

So, Roxy - I don't know how old you are, but hang on as long as you can. But, when you find that your life is no longer the way you want it because the knee is interfering - you will know that it is time. I don't care if you are only 20 years old when this happens - it is time, when you can no longer do the things you love, like walking to the mailbox.

PS - One benefit it, I no longer get down on my knees to scrub the toilet ;;D Hubby does them for me.

PSS - On the downside, insurance companies frown on knee replacements and will either rate you or waive your leg. My poor old left leg hasn't been insured for years

:-/

Sandy

Title: Re: Something that is working
Post by cootie on Mar 16^th, 2006, 11:10pm

Hey Roxy.......tramadol is a synthetic narcotic......they managed to take the adictive nature out of it and alter the substance to fool the brain so the addiction isn't as likely and the brain craveing it ordeal. I took it for about two years for my back and it still worked.....I did rotate with anouther med tho every week or two after a while just cuz I didn't want anything to stop working. I didn't start out takein it daily till the pain got chronic in my back and neck and other joints. (stunt woman lifestyle did it to me)......I took two at a time each were 50 mg's. Then I would stop takeing it after a few weeks to see WHERE I was at with the pain and if it was lesser I didn't take anything. And I didn't take mass quantities either.....took them twice a day IF it was bad enuff. I had NO PROBLEMS when I stopped. It helped the headaches I got when tensed up or out too......so it is one or the safer pain meds. Not that any of them are NOT addicting but it has the least chance for more long term use. Did that make sense ? Chronic pain will drive you insane Pam

A freind of mine also has the knee replacement issues.....she said ins will only pay for it once (that is what she told me) and you can only have it done twice......so if she had it now she'd need it again at retirement age and be stuck with the bill.

PS: almost forgot sumthin here......my doc told us that generic meds are not always 'consistant' and each pill may vary.......I even read where people on siezure meds that switched to generic cuz ins will only pay for generics about died cuz they needed a steady flow of a certain amount in there systems at all times and with the generic they were not getting it. So you may have some variations in yours and why you had the breakthru pain ! I have noticed that myself when I used it and a few other meds which seems to me should be WRONG it can be that way !!!!

Title: Re: Something that is working
Post by stevegeebe on Mar 17^th, 2006, 6:18pm

I heard that building a house will cure all.

Try that.

Let me know if it works.

My best.

Steve G

Title: Re: Something that is working
Post by unsolved1 on Mar 17^th, 2006, 6:30pm

None of the pain meds mentioned in this thread (with the exception of MS Contin that I have never tried) will even touch one of my headaches. Glad you have found something that works!

UNsolved