Hey Jon,

Looked up Topomax and it wins for having the longest list of side effects I've ever seen. (Reading disorder?)! Glad a low d I see work k s for you. Luckily, or unluckily, my dysautonomia is worse than my pain at this point in time.... I'm going to give the Cymbalta just a few more days...

I also have a lot of fatigue.....really a sea change for me. I'm adjusting though...slowly. I've written about this here before, but the thing working best for me now is yoga and body work....one-on-one. I bet this would be cheaper in Buffalo!

http://neurotalk.psychcentral.com/thread203096.html

I didn't last a week on Cymbalta.

I am on 50 mg twice a day. I still have the metallic taste too. Despite that it has reduced my shooting/electric jolt pain down by 80-85%. I usually only get it while taxing myself. So it a quid pro quo is disgusting ilk, really. When starting up I also could swear there were traces of its own light buzzing when my usually present symptom was low.

If I had something else to help with the pain or the shocks were not so random and awful I'd dump topamax, but I don't and they are and as such so it goes.

i don't think my buzzing has been low enough of late though or I've just gotten used to it. I found out how used to brain fog I became from Lyrica. I would go back if my symptoms grew much, much worse, but I'd wrestle with the decision and dosage would be as low as I could get with benefit.

I think mindfulness has been my best ally of late. I require everything else I have had at my disposal and used, but being mindful of these past 4 plus years, the journey, the changes and struggles and how to use that going forward.

I'd imagine everything would be cheaper here than NYC, yes. Lake Erie is unfrozen so we are expecting a week of lake effect. I stocked up today making sure my vehicle has a shovel and salt too.

Rambling off for a tad. Thankfully their snow estimate is off so far.

Jon

Hi Antonina,
I live in Connecticut and have been using medical Mj for several months.

My pain doc told me to get CBD only and avoid the THC because it is the THC that makes you feel high. My doc knew I was trying to cut down on my opiates and Lyrica with Med MJ.

When I got to the pharmacy, they claimed the CBD oil and THC worked synergistically for pain and that is what I should use. So, they gave me four different things to try...

..a vape with THC:CBD with ratio much higher CBD , for daytime use, I think it is 1:5
..a vape with THC:CBD with ratio quite a bit higher THC for nighttime use

they both help with neuropathy BUT, the THC makes me way too high if I smoke too much of either and there is no way I could drive and be normal on either vape. I told my PM doc and he said to insist on only CBD next time I go.

They also gave me something called "breath strips" which you melt on your tongue. I did not like them at all. They also had a mix of CBD and THC.

They also gave me drops of CBD/THC oil in a 1:1 concentration that can be put on a cracker or any small food item. I was not crazy about that either.

I liked the vapes best, especially the one lowest in THC. I was able to control the inhalation better. It definitely takes the edge off neuropathy and I generally feel better overall the next day. It helped with intense neuropathic pain, some with burning but it didn't help with numbness or balance. I did get deeper sleep with it.

I did get to my appt early and the waiting room was full. I asked all the folks in the waiting room what they took and what did they recommend. Of the 3 folks who sounded most intelligent and expepriencd, they all liked vaping best and recommended. One gentleman who had a degenerative nerve disease told me it was the only thing that helped him truly sleep since he was hit with his illness so I was happy for him and thought that was good news.

I was NOT happy with either the instruction or the printed materials I was given at the pharmacy. Both were poorly done and the labels on all the meds are not clear at all. I also had to pay a $100 registration fee to get my Med MJ ID card.
They also wanted me to jump through hoops to get a specific photo of myself for my ID and other stuff. I finally emailed and said LISTEN, I am out of work on disability, you are asking for WAY too much from folks who are ill. Here is a pic I took with my IPad and here are pictures, not copies of all the documents you asked for. Luckily the person receiving them took them via pics and I got my card in a few weeks. MAKE SURE YOU UNDERSTAND WHAT YOU ARE SPECIFICALLY GETTING AND HOW TO CLEARLY USE THEM.
The first night I vaped I burned my throat and the next time I took way too much and got WAY too high, like, tripping high. Take it slow when u start.
They told me to drink milk or something thick before vaping to coat my throat and that worked great.

This week I will be getting straight CBD oil.

My pain doc told me at my last visit, after he asked how the med MJ trial for me went, that the pain mgmt medical community was disappointed in the results that patients have been getting and the study results. Apparently there had been much higher hopes for med MJ.

Ithink med MJ it is a tool to add to ones arsenal of pain mgmt treatements and I am sure once I am more experienced, I can start cutting back on pain meds like opiates etc.

I wish you luck with your med MJ journey.

Personally, I think it has been hyped a bit to push sales. I was a bit disappointed but still glad to have it, as I need all the help I can get.

Good luck,
Diandra

p.s. to anyone who tries med MJ...you have to remember, most of these items are concentrated oils and much stronger than smoking a joint for pleasure. I thought I was starting out easily and slowly but I vaped way too much. Also, I did exactly what they told me NOT to do...they said, when you vape, if you don't feel it right away, DONT vape again immediately. I foolishly vaped 3x within 30 minutes and was SO high, I thought I could see my blood pulsing through the veins in my hands. Luckily, I don't get anxious or paranoid easily or I would have flipped...I knew I was just too high and it took several hrs to wear off. I did sleep like an infant though!

Ct is clearly a much more rational, humane state than ny. i cannot imagine any bureaucrat here accepting pix of documents & ipad fotos! good for you.

i am very definitely going to pursue mj...even if the best i can hope for is to get at least 4 hours sleep at a time. when i sleep well i notice that i am 'way less dysfunctional.

thanks again for the advice & sharing your experience.

I did want to add I found it useful for my muscle spasming in the past as well and look forward to some help in that area as well. I'm obviously not expecting it to nuke these symptoms out of existence, but relief in any percentage is valuable.

Could you let me know what you tried that worked for you?

It seems strange to me that they would recommend higher THC for nightime use as imo that's what gets me high and keeps me up. I have been told by many that some THC is necessary for pain relief. I did try a CBD edible that made me dizzy and didn't help as much with my symptoms as vaping with a CBD/THC combo. I have found that vaping is the fastest way to relieve the pain and as long as you don't overdo the fastest to exit your body.

For nighttime the best results for sleep has been making my own edible cookie and eating it about an hour before bedtime. I got a good 6-8 hours of sleep. Unfortunately when I left LA I could not replicate that recipe as my home state is not mm friendly. Even if I was so inclined to buy product here I would not be able to get anything except straight THC.

I just wanted to throw that in. My sleep came from Ambienand I am still getting my body to reset to life without it. I took it for about two years. I am still in a home trial of Marijuana as a pain medication. So far I conclude that the smoking of MJ does not lessen my pain but lessens my focus on the pain. I am able to escape for a while. When I run out of product, I will probably quit as it is quite illegal here. On the flipside, my friend swears to the reduction of pain. Good Luck, Ken in Texas.