For those on the medicaion merry-go-round..... I've compiled a list - Print it off for later resource if needed

General General TN & GPN (Old Site)
21

How do you get it in WA? Do you need a medical card? You're right across the bridge from me. I'm trying to get a medical card in OR, but you need to fill in grower information (?). I'm going to have to find help in how to fill out the application. I think my Dr. will sign without a problem...she's great and willing to try whatever might help me. Please message me.

shindig said:

The dispensaries here in WA state sell a variety of non smoke-able products, and they are everywhere now. They even sell teas, and different oils.

The edible butters/oils are probably the best way to take it. I usually make granola, oatmeal cookies, or even rice crispy treats. heh

They also have extracts called RSO oil that you eat, it's expensive though, takes a pound of pot to make several grams of it.

I find water hash to be the best for me. Just a single puff at a time. It has a lot of punch for pain relief... :)


Not Again said:

Where do you get the cannabis salve? Medical MJ is legal here in OR, but I didn't know it came as a salve. Just thought everyone smoked it.... and I didn't want to go there.

22

Wow that's some list! I'll keep trying!

23

Thank you so much I have printed the list scratched off what I have tried and will take to doctors to try others

24

Oooh thank you ... handy!!! x

25

You can add Nucynta (tapentadol) to your pain med list. It comes in regular form and also ER (extended release). It is similar to tramadol (Ultram), but it is still considered a narcotic, controlled, schedule II drug. It also has a nor-epi reuptake inhibiting effect, so they do not recommend taking it with other SSRI type drugs.

I just started it yesterday (switching from oxycontin ER 10 mg) and have already had to take breakthrough meds, but I know they started me at the lowest dose too.

Asked my doc to sign for me to get a medical MJ card...thought I would like to try the salve I've read about on this site. But she said I could not have a card AND take other pain meds.....either one or the other. Geesh. They prescribe multiple pain meds together! I am really po'd about it! Because I know I can go to one of the state clinics and get a card..but I'll have to pay their doc $175 for a "physical need evaluation" in addition to the state fee. It SUCKS. My Dr. visits are only $20.......and I just want to try a salve, not smoke pot just to get high :(

26

I made a friend request for a different question. : )

27

My current RX combo is:

120 mg Cymbalta per day - taken 60 mg at 8 am and 60 mg at 8 pm. This is what my neurologist considers the maximum dose for this med.

400 mg Topamax per day (brand name works better than generic) - taken 100 mg each at: 8 am, 2 pm, 8 pm, and 2 am. This is what my neurologist considers the maximum dose for this med.

200 mg Lamictal XR per day (brand name works better than generic) - taken 100 mg at 8 am and 100 mg at 8 pm

When I get break-thru pain (usually only happens when I am under a lot of stress), I take extra Lamictal in 25 mg increments, usually at bedtime. My neurologist says that I have room to increase the dose of Lamictal if this schedule proves insufficient to control my pain.

At one point (when my TN seemed to be in remission), 60 mg per day of Cymbalta and 50 mg per day of Topamax were enough to control the pain (ah, I long for those good old days!)

Giving up all caffeine (which revs up the Central Nervous System and therefore works contrary to all of the anti-convulsants) has really helped control my pain, as has trying to control my stress levels thru conscious breathing exercises (and avoiding stressful situations / people!). But obviously that won't eliminate the need for meds.

Has anybody had any experience with Yoga? Acupuncture?

When I first got TN about 8 years ago, I was on Tegretol, which worked wonderfully, but after about 2 1/2 years got back some questionable blood work and the neurologist switched me off, just to be safe. With Tegretol, the generic required a much higher dose than the brand name to deal with the pain. I had to visit the Mayo Clinic in Rochester, MN this past summer for my TN and they said that the "questionable blood work" was what they considered just at the high end of the normal range and they would NOT have taken me off Tegretol, but would just have monitored my labs more frequently for a while. So I now have that alternative in my back pocket if needed.

If anyone wants a 2nd (or 1st) opinion, I highly recommend the Mayo Clinic. You can self-refer just by e-mailing them a brief history of your situation. They called me back the next day and I had an appointment within 2 weeks. And they were "in network" for my health insurance. Now I am "their patient" and the neurologist and neurosurgeon said that if I need to come back, I can call them directly and they will work me into their schedule within 3 to 4 business days, even for a surgical option. They are also great at coordinating with my local neurosurgeon. By the time I got home they had sent her all of the reports from my visit.

28

Bump

29

Just a note- trileptal (oxycarbazine) different than tegretol (carbamazepine)
they are related but different and many people have one work and not the other

Thanks for the list!

30

I’ve had too many doctors who are eager to knock each other’s recommendations and change my meds without regard to the side effects. I’ll be doing better but not great and my meds will be changed because the new specialist doesn’t like the drugs I’m on and I’ll be worse off than before. Even working with multi disciplines at OHSU that are supposed to work together has been a big experiment in one step forward, five steps backwards. It’s very hard to stay positive when no one has my best interest at heart and they’re each ready to shrug their shoulders and give up on me because what usually works for their patients doesn’t work for me. No one is willing to think outside the box and stop practicing defensive medicine. I’m now totally disabled and spend every minute of every day coping and not living. I want so much more.

31

Depakote has and a low dose of tegretol has kept me almost pain free for the past 4 years.

32


There are places that make the salve, I'm in Oregon also there are clubs that you might be able to check with. I drive by one every day about 50th and SE Powell, it's got the Green Cross on the side of the building. Not sure where you are located in OR.

Danna


Not Again said:

Thanks for the info. I'll see what I can find.

Bellalarke said:

Find your local Compassion Club if you have them down in OR. You tell them what kind of pain you have and the knowledgable ones will suggest something. many, many different strengths and varieties. There are many ways to take cannabis. Even oils, tea, vaporizers. Also a pharmaceutical drug called Sativex. />

Not Again said:

Where do you get the cannabis salve? Medical MJ is legal here in OR, but I didn't know it came as a salve. Just thought everyone smoked it.... and I didn't want to go there.

33

Thank you for the list…
I’m in Israel and the TN it’s very rare disease here, I have I and II TN and I’m after 4 years of suffering !
Unfortunately I’m taking today
2800mg GABAPENTIN !!! And my neurologist ask me to take 800mg more, but I prefer not.
450mg PREGABALIN (lyrica )
10mg ESCITAlOPRAM
And I have all day pain that I can handle with.
When I have “electricity attack” (out of nowhere) I’m taking Oxycode syrup 5mg every 3 hours. And if it continues more than 3 days, FENTANYL patch replace the syrup for 3 days more, and I just want to dye in those attack days.
My feeling is that every Doc. That meet me is confuse and not really meet this TN at all, especially In the worst situation as mine.
Sorry for my English mistakes… I’ll be happy to any idea,
Dalit

34

Sometimes is best if possible,
to travel to a MOST EXPERIENCED
MVD surgeon for TN.

many are trying to give up on the meds, meds are not working.
to see if a surgeon can make them better.

It has for many of us!

Don’t give up and research all you can for your options!

35

i really love my diclofenac 10% cream. Vitamin B complex sublingual heals nerve endings and has helped me a lot too.

36

Thanks for the list. It's interesting so see how many I tried that did not work, caused an allergic reaction or sent me to ER. I truly don't think there is a common cure. It also depends on if you are working, retired or on disability, what your accountability for the day is etc. I know that I take 400 mg of Lyrica and 100 mg on Nortriptyline each day with 6 10-325 Percocet/Oxycoten. I have tried to come off the Nortriptyline with terrible results. The same for the Lyrica. I am never not in pain, 24/7 for almost two years and I have one of the best team of doctors in the Country. Everyone is different. I am single dad with two teenage sons, two dogs and a cat. I would love to zone out, they would love for me to zone out but I have no choice. I had to leave a very high paying job and go on Disability, lost my health insurance etc. My friends and family think i look fine so i must be making it up. I can manage all the sensations but the burning. There is nothing for the burn but laying down and doing breathing exercises until it passes. Luckily, I will have the same excellent health care again (thank you Mr. president) on 01/01/14. My doctor is thinking of a fifth radio frequency surgery with a new type of needle or the gamma knife brain surgery. it's just a big miss yet my long term disability carrier doesn't understand why i need to stay home. It is kind of hard to work when I need to take a nap from waking up and then take a nap after that. what i sucky post. sorry :-)

37

It’s okay, this site is for the good,the bad and the truth!

Have you been treated with topical meds?

38

topicals have very little effect on the overall pain and no long-term for me. I have a night retainer to keep my teeth in place and i put topical ointment in that and put it in for comfort. The pressure feels good. I wear it as often as I can when I am around the house.

39

and what a better way to loss some hair I have been told ;-)

Richard A. "Red" Lawhern said:

Now that I have my grand kids out of my little remaining hair, I'll try to start analysis of the data we've collected on medications for ATN pain. Dancer's consolidated list overall gives me a leg up on the project. Thanks, Dancer...

Regards, Red

40

"I also seriously would add 70-80 % dark chocolate in small squares throughout the day. I swear it keeps my serotonin levels steady, better than something like cymbalta. Just a thought." and a very good thought ;-)

Bellalarke said:

Okay, so your comment NA sent me straight to wiki and I am pasting the the adverse effects here because I want to bring something up about vitamin B6.

Serious side effects may include depression, hallucinations, suicidal thoughts, seizures that are worse or different, fever, sore throat, signs of infection, double vision, itching, rash, swelling of the face. A study published in 2005 suggests that the addition of pyridoxine (vitamin B6) may curtail some of the psychiatric symptoms.[7]
A rare side effect of Levetiracitam is a pins and needles sensation in the patient's legs, similar to neuropathy.


So my comment about B6 is that I started taking it as 5P5 in the morning before food with my other meds, without missing a day, and after a couple of months I felt an improvement in how well I tolerated - not Kreppa - but gabapentin.

Anyone else taking 5P5?

I also seriously would add 70-80 % dark chocolate in small squares throughout the day. I swear it keeps my serotonin levels steady, better than something like cymbalta. Just a thought.