Prescribed Indomethacin 3X Day

[mot]

I haven't taken it yet because I just read the warnings. Anyone take this for inflammation? It was prescribed for headaches by my neuro. How well is it tolerated? I am healthy and on no other daily meds. Did this or any other NSAID help?

M

[LauraL840]

::sigh::

There are only two things that I know of that will help for your HA pain.

1) Seal the leak

2) Seal the leak

Now, since you're working on that, there is one type of medication that can help, but it's not going to take ALL of your HA pain away. Opiate narcotics help. That's it. Try and avoid taking daily tylenol, nsaids, etc as they can cause rebound HA which is pretty nasty on top of a leak HA and can change the features of your leak HA pretty significantly!

DH's neuro GOT THAT, she really did! She prescribed him oxycodone (without tylenol). The dose strength was 10 mgs and she told him what his daily max was (I can't recall off top of my head, but I think it was pretty high). She Rx'd him for 240 pills! We had to LOCK IT UP! It lasted him 7 months cause he doesn't like narcotic pain relievers and worried about addiction (even though she explained that it was highly unlikely because he was using it legitimately and not to get high).

I'll go get the 'list' of meds he tried so you can get an idea of how MANY he went through! Then I'll post it here.....

[mot]

They gave me vicodin with tylenol at the Mayo, but it did not touch the last headache and just made me dopey. I took 3 of them in a 4 hour period. I finally drank a can of pepsi and the pain abated somewhat, allowing me to sleep, believe it or not! I think this is why he prescribed the indomethacin, because it does sort of the same thing as the caffeine, contract the inflamed
blood vessels, I think. Does that make sense? Most of the time I have very mild head pain. It is only when I lift something I should not have, that I seem to get bad headaches and mostly at night, during sleep. I keep wondering if it is a high pressure HA because I know the CSF production goes up at night. Anyone have any thoughts?

M

[LauraL840]

Brief Summary of Medications to date:

Analgesics/Narcotic Pain Relievers
1. Tylenol - no net benefit, caused rebound headaches
2. Percoset (with tylenol) - moderate pain relief, again tylenol ingredient caused rebound headaches
3. Ibuprofen - no net benefit, caused rebound headaches
4. Aleve - no net benefit, caused rebound
5. Tramadol - some mild benefit, caused rebound
6. Indomethicin (Indocin) - no benefit, caused rebound
7. Oxycodone (w/OUT tylenol) - moderate pain relief, some possible episodes of rebound, but only after 7 months of periodic use ... can't/ won't take this at work, only at home in evenings and on weekends.
8. Toradol injections (in hospital) - seemed to work well in conjunction with other IV medications which were:
9. Haldol (in hospital) - moderate pain relief, was IV medication, knocked him completely out
10. Ativan (in hospital)- moderate pain relief, was IV medication, knocked him completely out

Migraine Headache 'Preventative's' (which take a minimum of 4 weeks to 'notice' any net benefit)
1. Imipramine - no benefit, took medication for 8 weeks
2. Amitriptyline - no benefit, stopped after several days from adverse side effects, was asked to start again and try again. He did and it still didn’t help.
3. Topamax - prior to filling this [$60/month medication that would have taken two full prescriptions to find out that it really isn't going to help since nothing but sealing the leak will TRULY make the HA stop] ... we researched the side effects and decided the 'risk/benefit' pendulum was WAY over on the risk side!!!!! He won't fill this script.

OTHER prescription which fall into varying 'classifications' of uses:
1. Lyrica - not only no benefit, the side effects were horrendous!
2. Carbamazepine (Tegretol) - no benefit, low tolerable side effects
3. Neurontin - never filled after Lyrica experience!
4. Solu-Medrol (methylprednisolone, in hospital) - made him swell up!
5. DHE-45 (dihydroergotamine, in hospital) - migraine 'abortive'; 7-day PICC line IV course in hospital which has to be given in conjunction with phenergine and benadryl to COMBAT side effects .... nasty nasty nasty side effects, did nothing for HA
6. Zanaflex - migraine abortive, mild side effects, no noticeable HA improvement
7. Frova - migraine abortive, mild side effects, no noticeable HA improvement
8. Maxalt - migraine abortive, mild side effects, no noticeable HA improvement
9. Relpax - migraine abortive, mild side effects, no noticeable HA improvement
10. Celebrex – mild improvement, carries high rebound potential

[LauraL840]

They gave me vicodin with tylenol at the Mayo, but it did not touch the last headache and just made me dopey. I took 3 of them in a 4 hour period. I finally drank a can of pepsi and the pain abated somewhat, allowing me to sleep, believe it or not! I think this is why he prescribed the indomethacin, because it does sort of the same thing as the caffeine, contract the inflamed
blood vessels, I think. Does that make sense? Most of the time I have very mild head pain. It is only when I lift something I should not have, that I seem to get bad headaches and mostly at night, during sleep. I keep wondering if it is a high pressure HA because I know the CSF production goes up at night. Anyone have any thoughts?

M

Yeah, the caffeine makes sense. And I don't think there's any harm in trying indomethacin. I just don't think it will work, at least there isn't any supporting documentation that it will. However, there IS supporting documentation that caffeine works! So you could try drinking more caffeine or taking caffeine pills.

DH's HA was worse at night too, not every night, but a lot of nights it got worse. We're not sure why, but that can happen to some people. I think it originally started with rebound HA's which really altered the uniques features of the leak HA.

If you don't already realize this - NO LIFTING, BENDING, TWISTING applies to leakers as well as post-EBP leakers! All of these things greatly exacerbate the symptoms! Don't be all macho and "do what I've got to do" just cause you've always been able to! DH hasn't taken out trash, done laundry, mowed the yard, etc in well over a year. He HATES it and hates that I won't let him do anything strenuous any more ... it makes him feel like a shmuck, but I'd rather bust my 'who-who' than see him hurt cause he just 'had' to help out with stuff!

Go ask your wife and I bet she feels the same! Ask her if she'd rather do things herself or pay someone else than see you do whatever it is that is too strenuous! DH always experienced a 'delay' in increase HA after doing too much. Sometimes it would be 24-36 hours later that his HA would steadily climb and he'd be beside himself in misery!

[mot]

Brief Summary of Medications to date:

Analgesics/Narcotic Pain Relievers
1. Tylenol - no net benefit, caused rebound headaches
2. Percoset (with tylenol) - moderate pain relief, again tylenol ingredient caused rebound headaches
3. Ibuprofen - no net benefit, caused rebound headaches
4. Aleve - no net benefit, caused rebound
5. Tramadol - some mild benefit, caused rebound
6. Indomethicin (Indocin) - no benefit, caused rebound
7. Oxycodone (w/OUT tylenol) - moderate pain relief, some possible episodes of rebound, but only after 7 months of periodic use ... can't/ won't take this at work, only at home in evenings and on weekends.
8. Toradol injections (in hospital) - seemed to work well in conjunction with other IV medications which were:
9. Haldol (in hospital) - moderate pain relief, was IV medication, knocked him completely out
10. Ativan (in hospital)- moderate pain relief, was IV medication, knocked him completely out

Migraine Headache 'Preventative's' (which take a minimum of 4 weeks to 'notice' any net benefit)
1. Imipramine - no benefit, took medication for 8 weeks
2. Amitriptyline - no benefit, stopped after several days from adverse side effects, was asked to start again and try again. He did and it still didn’t help.
3. Topamax - prior to filling this [$60/month medication that would have taken two full prescriptions to find out that it really isn't going to help since nothing but sealing the leak will TRULY make the HA stop] ... we researched the side effects and decided the 'risk/benefit' pendulum was WAY over on the risk side!!!!! He won't fill this script.

OTHER prescription which fall into varying 'classifications' of uses:
1. Lyrica - not only no benefit, the side effects were horrendous!
2. Carbamazepine (Tegretol) - no benefit, low tolerable side effects
3. Neurontin - never filled after Lyrica experience!
4. Solu-Medrol (methylprednisolone, in hospital) - made him swell up!
5. DHE-45 (dihydroergotamine, in hospital) - migraine 'abortive'; 7-day PICC line IV course in hospital which has to be given in conjunction with phenergine and benadryl to COMBAT side effects .... nasty nasty nasty side effects, did nothing for HA
6. Zanaflex - migraine abortive, mild side effects, no noticeable HA improvement
7. Frova - migraine abortive, mild side effects, no noticeable HA improvement
8. Maxalt - migraine abortive, mild side effects, no noticeable HA improvement
9. Relpax - migraine abortive, mild side effects, no noticeable HA improvement
10. Celebrex – mild improvement, carries high rebound potential


Hi, Thanks for the breakdown!
I want to warn you about any prolonged use of benzodiazepines like ativan, valium,diazepam, klonazepam, xanax,etc..
Because of their unique properties benzodiazepines are insidiously addictive and cause symptoms that you would not associate with addiction, listed here:
http://www.benzo.org.uk/manual/bzcha01.htm#9
and Here under symptoms on left of page:
http://www.benzo.org.uk/
They are harder to withdraw from than heroin or cocaine.
If they are used frequently they can cause more problems than a CSF leak.
Check this out if you are interested:http://www.benzo.org.uk/manual/index.htm

I have tried a few of the meds on your list and I concur with your experiences. They all have their drawbacks, and as you have stated, the only cure is cessation of the leak. The one that helped me, but that is notorious for rebound is butalbital w/aspirin and caffeine. We know why this works, but then it will bite you back badly in the end.

Thanks for the info.

M

[mot]

Yeah, the caffeine makes sense. And I don't think there's any harm in trying indomethacin. I just don't think it will work, at least there isn't any supporting documentation that it will. However, there IS supporting documentation that caffeine works! So you could try drinking more caffeine or taking caffeine pills.

DH's HA was worse at night too, not every night, but a lot of nights it got worse. We're not sure why, but that can happen to some people. I think it originally started with rebound HA's which really altered the uniques features of the leak HA.

If you don't already realize this - NO LIFTING, BENDING, TWISTING applies to leakers as well as post-EBP leakers! All of these things greatly exacerbate the symptoms! Don't be all macho and "do what I've got to do" just cause you've always been able to! DH hasn't taken out trash, done laundry, mowed the yard, etc in well over a year. He HATES it and hates that I won't let him do anything strenuous any more ... it makes him feel like a shmuck, but I'd rather bust my 'who-who' than see him hurt cause he just 'had' to help out with stuff!

Go ask your wife and I bet she feels the same! Ask her if she'd rather do things herself or pay someone else than see you do whatever it is that is too strenuous! DH always experienced a 'delay' in increase HA after doing too much. Sometimes it would be 24-36 hours later that his HA would steadily climb and he'd be beside himself in misery!

Wow, Laura, that is just what happens after lifting, except it happens within hours to me. The pain steadily climbs until it is a 6 or a 7. Not fun. You think I would have learned after the first time! My little wife is doing all the heavy lifting now.

M

[LauraL840]

Mot,

He's not on any of these meds currently. All he's on now are meds for the high pressure....

Diamox
Lasix
Ambein (sleep and not nightly, it works TOO well for him)

He really doesn't like pain meds. Doesn't like how it makes him feel!

A note on the valium, for POST OP pain and control of muscle spasms, he used the valium in conjunction with dilaudid (hydromorphone). The two together worked extremely well for post-surgical pain.

However, withdrawal was HELL on earth and he was 2 days into cessation of meds before we both realized he was having withdrawal!

Of course when you go looking into the symptoms, most all you can find are things pertaining to ABUSERS of these meds and not legitimate users. Still, he was legitimately using (sparingly) these for 2.5 weeks post-op and when he quit, it was tough! When we figured out that was what was going on, we flushed the remaining pills!

[mot]

Although ambien is not a benzo, it works very much like one and is very addictive. In the UK the new guidelines for benzos are only prescribed for 2-4 weeks max. Iatrogenic benzo addiction is an unaddressed problem here, and in the UK. Doctors prescribe these for everything from ibs to a hangnail. Some people get hooked on a weeks worth of using them! I was given diazepine to take for headaches by my trusted internist at Einstein in NY, so I know from personal experience about these things. My advice? Use not at all or very,very sparingly.

M

[Concerned Gal]

To address your original question - i wouldn't touch indomethacin. I was prescribed it when they didn't know what was wrong with me. I took it for two days and ended up in the ER by the second day. It didn't change the pain level much but my nervous system type symptoms were severely exaggerated. I felt like I couldn't move my limbs, totally 'out of it' feeling in the body, unstable feeling, my heart was racing. These were all things I felt at various times leaking, however this particular two days on this medication were much worse. Stopping it brought me back to much less symptoms and I won't touch it again. I was prescribed something similar (no I think it was the same thing) post-op csection along with other meds and I 'toughed it out' rather than chance it again.

(For what it's worth, I was sent away from ER with no diagnosis and a 'it'll be alright, there is nothing serious wrong with you' :rolleyes:)

[mot]

To address your original question - i wouldn't touch indomethacin. I was prescribed it when they didn't know what was wrong with me. I took it for two days and ended up in the ER by the second day. It didn't change the pain level much but my nervous system type symptoms were severely exaggerated. I felt like I couldn't move my limbs, totally 'out of it' feeling in the body, unstable feeling, my heart was racing. These were all things I felt at various times leaking, however this particular two days on this medication were much worse. Stopping it brought me back to much less symptoms and I won't touch it again. I was prescribed something similar (no I think it was the same thing) post-op csection along with other meds and I 'toughed it out' rather than chance it again.

(For what it's worth, I was sent away from ER with no diagnosis and a 'it'll be alright, there is nothing serious wrong with you' :rolleyes:)

I wish I would have seen this yesterday! I took one lousy pill in the afternoon and by bedtime my stomach was gone. Like gastritis only worse because overlaid on top of it is anxiety symptoms! I am just resting in bed and drinking water. Man am I miserable!
Thi drug is horrible!!!!@

M

[wobbles]

Mot:
Sorry that I didn't read your post in time to warn you about the gut stuff! I was going write that it can EAT YOUR GUT LINING...as can all NSAIDS! I have a friend that used Viox for a couple of days...years ago...and still has major gut problems. Her new doctor says that the NSAID was the cause and that it will take months to undo what the Viox did. Now the drug you took is older and not exactly the same but they are both NSAIDS so carry similar risks! The good news is that you only took the one pill...so you should be able to ride this one out without any permanent damage to your gut.

Do everything you can to let your gut heal...lots of fluids...foods that are soothing to the gut like oatmeal, cream of rice...that sort of thing can also help.

stay strong-

wobbles

ps...for severe HA pain I like morphine...it is quick to act...doesn't make me feel woozy just reduces the pain. If you take more than your body needs, then it will make you feel loaded, or so my doctor tells me - I haven't experienced that at all. But when they tried Vicoden...yipes...made me feel sooooo leaded...no wonder folks abuse it! I hated that feeling...just want my pain decreased or gone...don't want to feel stoned, thank you very much! A risk of any opiate or other analgesic drug is the rebound of HA pain. I avoid that by taking the morphine in a time release form...unfortunately my pain is 7+ all the time without help (and sometimes with help!) so help is a necessity for me!

[mot]

Thanks Wobbs, the soreness is decreasing. I am really bummed out because I was supposed to take my daughter to a special event today and couldn't.
Oh weell, what are you going to do, right?

M:confused:

[Concerned Gal]

Wanted to also add those of us with inflammatory bowel disease (there are a few) that we can't do anti-inflammatories anyway.

Sorry mot you aren't feeling the best.