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Aug 24, 2015 11:47 PM

What medicine is everyone taking to manage symptoms?

Aug 25, 2015 1:14 AM

I take Oxyneo, Percocet, Gabapentin, Naproxen, Cyclobenziprine, Elavil, and Zopiclone. Its a brutal cocktail of drugs but it seems to be a combination that allows me enough relief so that I can live.

I have been on some kind of opiate type drug for 7 years now and they make me life tolerable but they alone cannot deal with the extreme pain. I don't really have any side effects from them except maybe mild constipation. BUT I am dependent on them, my body has become so use to the drug that I am physically dependent on them and I begin to feel withdrawal symptoms if I am late on taking them on my regular schedule . If you are prone to addiction or have family members who are then I would recommend not getting involved with them. Pecocet, which I use as a break through drug, works very well for me. I only take a 2 to 4 of them a day but when the pain gets really bad I take one or two of them and within 20 minutes I am getting decent relief from the extreme pain.

I did take Lyrica at one time but I switched to Gabapentin, as the side effects were bad from me from the Lyrica. I have side effects from the Gabapentin too and they are similar to those of the Lyrica but I feel less BLAA while on it vs Lyrica. Side effects on the Gabapentin for me includes slight blurred vision, ringing in the ears, groggy and foggy head, poor memory, dry mouth and headaches.

I take Naproxen on really bad days but I have been advised that long term use of this super anti inflammatory is dangerous as there are real risks of stroke and heart attack. So I am very reluctant to take them these days. They seemed to work pretty good on what I would call bad arthritic days.

Cyclobenziprine is a super muscle relaxer, so when my muscles are in spasms or all knotted up, usually my back has spasms after doing too much like sitting or walking for too long, thats when I take this drug and it works but works too well and you are under its influence for 16 to 24 hours. Its great at helping you sleep too but you get what I would describe as a drug hangover from them. I feel very weak and lethargic the next day after taking them so its a trade off, if you need relief of muscle spams, you need to know that the next day you will feel terrible.

Elavil is an anti depressant. They found that people who have been taking this drug for treating depression have also found they have less pain. i don't want to take them anymore and will be talking to my doctor about weening myself off them. They actually cause me to feel overly emotional. I am not an emotional type and while on this drug I find myself feeling way too sensitive to emotions. This drug did work for helping me sleep and I also had better blood pressure for some reason.

Zopiclone is a sleeping aid. I don't sleep much, normally just 2 to 4 hours a night. This drug allows me to get more like 4 to 5 hours sleep. I don't use them much as you can become quite dependent on them and they can also stop working as a sleeping pill and cause just the opposite effect if you use them a lot. I only use them after 3 to 4 nights of no sleep. This drug too causes a drug hangover but normally it will clear out about midday then next day.

You and your doctor, if you have chronic extreme pain will likely have to experiment on combinations of drugs to find one that will work for you. I like the opiate type drugs and not because its known as a recreational drug, Percocet or other instant release opiates work wonders but they are addictive so watch your use. I don't like they way I feel on the pain blockers like Lyrica and Gabapentin but they work at providing pain relief to a modest degree. The super anti inflammatories are dangerous and I recommend you seriously try to avoid using them. The super muscle relaxers are excellent but you get a hangover off them and you can become dependent or addicted if you are not careful. I don't like the anti depressants but they can work wonders for some people. And sleeping pills are a drug that you need to use with caution and common sense.

My life circles around when my next set of medications are available. Being dependent on chemistry to make it through the day is not a fun thing and I don't wish it on anyone. But the drugs are the only thing that provide me enough pain relief so that i don't end up taking serious measures. There are times where I don't know how I am going to make through the next hour never mind growing old with this kind of pain. I realize growing old is probably not in the cards for me so I just try and take things day by day or hour by hour. Get mental health assistance if you get like this, I owe my life to that and reaching out for that kind of help was not easy for me. But its the reason I am here to type this note to you and others.

Aug 25, 2015 1:27 AM

DMSO, LDN, Iodine, Magnesium Spray, Cough syrup (ingredient helps nerve pain), ginger, Sudafed, Kava root, magnolia bark, sunflower lecithin, fish oil, vitamin A, C, D, E, manganese, melatonin, valerian, Zyrtec, Flonase, Benedryl, aspirin, rub on menthol/aspirin, inhaled menthol, albuterol, Zinc, raw Thyroid, garlic, Tumeric, lemon balm, Gallium

Accolate, Qvar, Gabapentin / Neurontin, Pregabalin / Lyrica, Advair, Tylenol 3 / acetominaphen, kratom, alcohol, quinine, dozens of home remedies, Ibuprofen(used to work like magic)

For me, I really need DMSO, raw Thyroid, Iodine, (and at home Sudafed) to survive. Haven't found any prescription meds that do as much, but no doc had been willing to give me pain killers besides Tylenol 3/NSAIDS due to my age.

Aug 25, 2015 8:37 AM

I have many asthma meds, some taken several times a day; singular,nasonex, saline nasal spray, zyrtec, qvar, benzonatate (bronchial cough), biotene (sjogrens mouth), carafate or mycelex (mouth thrush), Ventolin (Emerg), epipen. The biggest risk is being short of breath if I forget.

I have nortriptyline for depression & Tranxene for anxiety, both necessary since 2010 surgery and speaking health issues.

I take Plaquenil for sjogrens, Tylenol Arthritis or Naproxen (2xday) for osteoarthritis, regular Tylenol for headaches or Midrin for migraines, oxybutynin for IC & OAB, donnatal for pelvic floor pain & hyoscyamine for pelvic floor spasms, Linzess citrucel & psyllium fiber for IBS-C, Tizanidine for tremors,systane for my dry eyes (sjogrens), levothyroxine & liothyronine (hypothyroidism), iron (anemia), D3, L-Methylfolate & Multivitamin(B vit genetic metabolism issue), medium (GERD), aspirin (vein reflux legs), Chlorzoxazone (muscle spasms), Valium or antivert (vertigo), Tramadol (pain, fibro), Melatonin (insomnia). My gabapentin is on hold until after my Mayo dx.

I have so many bad drug allergies, especially to narcotics, so my pain med choice is very limited. I try to be active with exercise at least 10-30 minutes a day. I've noticed staying active helps with my osteoarthritis stiffness and muscles. On bad days I skill exercise. But since starting the Plaquenil my daily average pain has gone down to a 3-4. My pain doc said he'd like it to be 1-2, but I don't know if it will go lower. Even exercising, I still get fatigued easily with activity. 🙏🌼

Aug 25, 2015 8:40 AM

Medium = Nexium (GERD)
Skill = still exercise

Aug 27, 2015 10:12 AM

I want to try patches instead of taking so much opioids, but doc won't allow me. I'm worried more about the addiction the pills can give me..not sure about patches though

Aug 27, 2015 11:58 AM

Fentanyl patches are just as addictive as any other narcotic. It is just taken into your body a different way. It may take longer too. I was on fentanyl lollipops (1200mcg) and I was taking 8-10 of them a day. It was the ONLY drug I took that made me feel better. Since the prescription was over $15,000 a month, they would no longer cover it and now only give them to dying cancer patients. I was considering going back to the patch which was 150 that was supposed to last 3 days. When I would first put it on, I would sweat and get a rush and then it would settle down but never lasted 3 days. I hope you can find a drug that's helpful. I'm on many myself and would love to not have to take them. Best wishes to you. I hope your pain doctor is able to work with you to help. 🙏🏻🌻

Aug 27, 2015 1:08 PM

Fentanyl has only lasted 48 to 60 hours for me. I have tried every place to apply them and every method even those not approved or suggested same result. If you sweat you will have to change the patch and you cannot because you only have 10 a month. Some doctors are a bit more understanding and will write 15, I guess maybe they sweat too! Even a shower (I have really long thick hair) it would start peeling. Forget long baths or swimming for therapy. As far as addiction ALL OPIATES CAUSE PHYSICAL ADDICTION- PERIOD. When you take a drug daily your body becomes dependant on it. We all have opioid receptors in our brain that like opioids when the brain gets used to having them daily, month after month for years the receptor will scream for more. Ever seen someone try to stop smoking or drinking? Virtually the brain has receptors for almost every chemical we put in our body.Twitching, fidgety, grouchy, shaking, nausea, headache the list goes on and on. Same feelings withdraws do not look much different than dt's. I have actually gotten rebound headaches from taking tylenol daily. Short version: yes, you will have physical dependancy if taken for a long period of time.

Aug 27, 2015 1:43 PM

I've been taking hydrcodone for 5 years since my Chiari surgery. I have become tolerant so it no longer works. I can't get my doc to switch things up at all. I don't want to go stronger just something different.

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