Im semi-curious to know what you guys are taking in terms of medication to aleviate pain fue to what symptomes? Also if anyone has had any success in alternate ways of managing pain? Thank you
I have done acupuncture, which helped quite a bit. There were actually days that I left there and almost 90% of my pain was gone!! We're trying many different med combinations, trying to find something that works. It's frustrating because it's taking such a long time. It's a process of elimination. And many of the new meds are not even covered by my insurance! I would suggest trying to see if your docs have samples of the meds that they want to give you. I learned the hard way about that. Everyone is different in whether or not a drug will work for you. Believe me, I've tried a ton of them over the years! I am taking Maxalt for the severe migraines, and that really seems to help. That's the only new med that I found has helped me so far. Most meds tend to make me very sick, woosey, or sleepy. It would be nice to find one that I could take daily, that wouldn't make me feel dopey, and is covered by my insurance! The quest continues.... Have you found anything that has helped you?
Im on Vicodin 3 times a day, Muscle Relaxers 3 times a day, I also take Topamax at night 2 25mg and Restoril 30mg at night to help me sleep thru the night. The only thing that I have found that really helps me get thru the day is the Vicodin, without it I can tell a big difference in the way by body responds. However like most days with the medicine I still have a pain level on 6 or 7 but its lowered enough to get thru the day. Even on the medicine I still have to make trips to the ER to get pain shots and Fluids because after days of Nausea and pain it the medicine I have at home isnt enough to get me thru. Alot of doctors are very hesistate to give Narcotics because I guess in the books they have it says that with Chiari Narcotics arnt good for it or doesnt work, but I find that the Vicodin is sometimes the only thing that will knock thru some of the pain and give me a little relief. Doctors will have their books but sometimes you just need to let them know that their book isnt gonna tell them what works for ME.
I was taking tramadol daily for nerve pain and loratab when needed. but I found nothing helped with headaches most of the time. Now I had surgery about 4 months ago ago and a calf leak 3 months ago ( now that to me was worse then surgery but since I recovered from that after 15 days in hospital. I have only had 2 headaches and firocette worked for those it took them right away.I will be going to a pain management doc this week so we will see what's next
they have me on valuim and flexeril to help with my spasms and muscle cramps... then for my headches and other pains i take percocet, i really hate taking the meds because i once had a prescription drug and alcohol problem in the past before i found out i had CM1... its not hard to get hooked on pain pills... if you are taking any sort of narcotic or possible addictive med just be careful, cause its easier to get hooked then it is to get off
Thank you all for your Replies, its really nice to have people I can reach out to, I'm currently on Naproxen, Tramadol, Amitriptyline, occasional Rizatriptan for when i feel like dying. Doc is now trying Propranolol (blood Pressure meds) to see if it could help my occasional use of Rizatriptan. I am considering starting acupuncture since some have tried and got some relief from it, I feel like a walking medicine cabinet :( just to get trough the day its crazy the amount of meds I need. Has anyone every tried to quit everything cold turkey and get on the RAW foods bandwagon that is going around? I have a lot of people tell me, it would do miracle for me, but i just can't see how... your opinions...?
Thank you all for Sharing
Please be very careful about quitting cold turkey! That can potentially be very dangerous! Please talk to your doctor before you stop any of those meds. You can go through withdrawal, which I can tell you from experience, is a nightmare! You can look up online about each med and what its like getting off of them. Believe me, there’s been days where I feel the same way. I’ve been fighting the whole prescription meds thing for awhile. But I finally gave in. We’re now in the experimentation phase, which is horrible! I feel dopey and tired all the time! Its going to take awhile, but I’m going to give my docs a chance. Just make sure to stand up for yourself, be your own advocate! Tell your docs what they are doing to you! Good luck!
We have some great past Discussions on Pain Management. Our Discussion Search is not working. Ning is working on it. I will find the ones I can.
I have tried every medication known to man I think.
I currently take:
100 mg Tramadol 3 times a day - neck and head, shoulder, arm and spine pain
1 mg Clonazepam 3 times a day - neck pain & Muscle tightness
50 mg adderall XR daily - for POTS and Depression - I can't take anti depressants and it's approved for off label use.
75 mg Amitriptylene at night - neck pain and headaches
100 mg Trazadone - as needed for sleep - Imsomnia
Fioricet as needed for Headaches- Occipital Neuralgia
Arnicare - neck pain, head pain anywhere I hurt or have muscle pain or spasms
Than I have emergency medication if these don't work:
Valium 10 mg - Neck pain, Headaches, Stress, Anxiety
Flexeril 10 mg - Muscle relaxer
Dilaudid - narcotic pain reliever - used for Headaches when nothing else will work
Morphine Cream - neck Pain when nothing else will work - developed by my physiologist & a compounding pharmacist.
If these don't work I then go to the ER.
I have also had Nerve Blocks, Ablation, Acupuncture, Hypnosis by a clinical psychologist, use breathing exercises, visualization, biofeedback, quiet , dark rooms, heating pads, anything for stress reduction, nutritional counseling,
Past Discussions I could find:
http://www.chiarisupport.org/forum/topics/managing-your-pain-management?xg_source=activity
http://www.chiarisupport.org/forum/topics/pain-killers-legal-and-safety-issues?xg_source=activity
Ibuprofen only as needed - acupuncture -seems to work well - it is subjective, though.
I am lucky all my symptoms except for vomiting are transient. The vomiting lasts 36hrs. I vomit up anything I take, so anti vomiting tablets are not good.
I quit eating sugar & bread & have fewer symptoms & fewer aches & pains, but I still have CM :-)
All the best.Sonj
I currently take Oxynorm & Lyrica. Unfortunately I am medication sensitive & am allergic to 90% of pain meds. I've tried everything & my current meds are the only ones that help take the pain from a 10 to 7 or 8. I had thoughts on trying Acupuncture but can't. And nerve blocks are also out. I'm thinking of taking up meditation & will see how that goes.