Good evening @possiblecidp and thanks @amandajro for the introduction. First, Steve @possiblecidp have you been diagnosed with CIDP? Are you taking any medication for pain other than the medical cannabis vape? And second, another question for which your post appears a bit disconcerting. One single vape puff of medical cannabis reduces your pain to a tolerable level and you now are using it up to three nights in a row. Question #1....how many nights in between the three-night dosages? And #2.....are you really saying that one single draw on a vape is enough to reduce your pain and put you to sleep within 90 minutes?
The reason I am asking is this.......when I started with medical cannabis, I used a vape, and one draw was not able to reduce my pain so that I could sleep. So....you are way ahead of my journey which might be interpreted that you can always add another draw if your pain level continues to become higher.
Since you are in Florida and can visit a medical cannabis dispensary, perhaps the staff "pharmacist" could help you with that answer. And finally, are you familiar with the strain or strains used in your vape? If you are using Indica, that would potentially have less strength than a Sativa strain. So....changing strains can also be a way of increasing the potency of your vape.
I no longer do any vaping because of the danger to other parts of my body, e.g. lungs. However, I can tell you that as my neuropathic pain progressed, my dosage had to progress also. So...I may have stayed with the 2:1 CBD/THC dosage but upped the tincture amount used to 1/2 a dropper as opposed to 1/3 a dropper.
Hopefully, this will make sense and show you alternative ways to increase the pain dosage in one way or another. A final example: As you probably know, pain can create anxiety and anxiety can heighten pain. I began taking Duloxetine 3 years ago and was prescribed 30 mg every morning. It worked better with my anxiety than any other medication. So....as my pain began to ramp up so did my anxiety. My PCP and I made a shared decision to keep the medical cannabis at the same dosage and increase the Duloxetine. I am now at 120 mg every morning.
Please remember that neuropathy in all of its forms is symptom progressive. We must carefully increase our "treatments" to ensure that we can live with the degree of pain and discomfort that we encounter.
How does this sound to you? Helpful?
May you be safe, protected, and free of inner and outer harm.
Chris
Hi Chris, and thank you so much for taking the time to respond. I'd like to respond to your comments/questions one at a time, so that I don't miss anything important.
CIDP - in asking/pushing one of my neurologists (I've seen 4 now) to PLEASE try and think of anything that might be causing my NP (because I've been told it's idiopathic), he suggested I take a blood test to check for markers for any banding that would show in my spinal fluid. When something showed up in the blood, I had the spinal test and there were 'multiple bands', so I then went to the Mayo Clinic to see if CIDP was a possibility. From the time I got those results to the time I went to the Jacksonville clinic, I signed up for this forum with the name "@possiblecidp". Since then, it was confirmed that regardless of the bands found, there's no way my NP could be considered CIDP... but I haven't figured out how to change that part of my profile (any ideas on how I can change that would be helpful).
Other medication - I take 2400 mg of Gabapentin a day, which eases the pain by a point or two. I'm told I can go up to 5,000 mg/day, but just as with cannabis, I don't want to go to the limit now, when I may need it even more as I get older.
1. That three night in a row thing only happened once, and it was after a two day break from it.
2. Yes, a single draw on a vape with a medical marijuana cartridge gives me 90 minutes of pure relief, with sleep always following it. The info on the box is: Cartridge-0.5g, Purple Punch Distillate, Indica, THC-77.18%, CBD-0.0%, Total Terpenes-5.74%. I have tried many different options, from flower to oils under the tongue to creams, including different cartridges for the vape, and this is the only thing that I have found to work.
3. I have asked both my doctor and two dispensaries, and while they all said that I shouldn't be shy about using what makes me feel best now, in whatever quantity worked best... that was from the point of view of someone who sells it, and not from someone who takes it. Hearing from someone with actual experience is important to me.
4. I have tried two other Sativa strains, and neither of them gave me any relief or the ability to sleep through the pain.
5. You mentioned a 2:1 CBD/THC oil. I only tried one oil, the info on the box is: Hybrid, Total THC: 300 mg, Total CBD: 300 mg, THC:109.4%, CBD: 110%. I'm guessing that means that it's 1:1, instead of 2:1. Do you think a 2:1 would allow for more pain control during the day? The reason I ask is that on a bad day (of which there seem to be more lately), I am just trying to hang on until it's 8 or 9 o'clock when I can take that one draw on the vape, and if an oil would help get me through those bad hours, it would be great.
6. One of my neurologists told me that certain anti-depressants have been known to help with NP pain, and so I've tried Duloxetine (as Cymbalta), Amitriptyline, and am now trying Wellbutrin - each for a minimum of a month, and there was no discernable pain relief while taking, and no increase in pain when I stopped. They DID have the effect of making me very emotional, especially as I watched the Hallmark Christmas in July movies.
I understand that neuropathy is progressive, as this started 6 years ago with just painless pins and needles, and has ramped up to the point where I can no longer work, walk for any appreciable distance, stand for more than 15 minutes, etc.
As I said, I am just concerned that the more I use the vape, the more I'll need as I get older and the pain grows worse... maybe until it no longer works, and I really need to know that this will be long term relief.
Yes! You were every helpful, and I'm so glad I finally found the right section of this Mayo Clinic forum. I look forward to hearing from other people with PN, as there's no one I personally know with this, and it is sometimes very hard to go through this without learning from others. My family is very supportive, but to discuss it with someone who knows what it's like will be very helpful indeed.
Thank you, Chris.
Steve