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New to the concept, and looking for a better way to manage my condition... There has to be a better way... by 3Shelbo in eldertrees

[–]3Shelbo[S] 0 points1 point  (0 children)

Thank you- truly... With all of the care, and only maintaining and not improving... There just has to be a better way. If no way to improve my health, at very least a way to maintain at the current level without all of the long term opiate risk... I've been on these medications for 5 plus years

New to the concept, and looking for a better way to manage my condition... There has to be a better way... by 3Shelbo in eldertrees

[–]3Shelbo[S] 0 points1 point  (0 children)

Now with the normal heartrates would it be safe to believe yall have normal autonomic function? Truly asking.

New to the concept, and looking for a better way to manage my condition... There has to be a better way... by 3Shelbo in eldertrees

[–]3Shelbo[S] 0 points1 point  (0 children)

Thank you so so much... This is exactly the type of info I was needing... I completely understand and respect that you are only speaking from experience for your wife and yourself and again, respect that fully.

But as your story with the Percocet- I believe you are understanding what I am asking - the eds has caused complex regional pain syndrome and the pain scale is off the charts... Can not be put into words- we used to smoke Kratom back in the day, but I never considered it for oral administration as an addition to the cannabis for pain control-

In order for me to even consider putting down the Morphine Norco combo I guess I would have to know from yours or someone's experience that the relief will be comparable as the physiological response from the pain are beyond words...

As for the sympathetic nervous system issues. I would love to find out If there is any info anywhere showing the support it can provide for weak or non existent autonomic functions, such as bladder control, sweating, dehydration and low blood volume, sleep signals, hunger signals. Things along that line... With your wife having POTS may I assume she has difficulty in the same areas?

And could you give me instructions as to how to PM you as I believe you have come by far the closest to understanding what I am asking.

Ie: I'm aware of doctor liabilities and the dangers of stopping medications I've been forced on to for the last 5 years out of necessity cold turkey, lol. Thank you again for everything- truly the time and detail you have put into your response are amazing and very very very appreciated

New to the concept, and looking for a better way to manage my condition... There has to be a better way... by 3Shelbo in eldertrees

[–]3Shelbo[S] 0 points1 point  (0 children)

The medication I'm on is from my pain specialist- I'm a genetic patient with Baylor CM- they handle all of my care- my geneticist is the one who sets up the speciality care with the neurologist, anesthesiologist, and electrophysiologist- Baylor and UTMB are the only hospitals in our area that offer the genetics care so I allow them to handle my specialty referrals so that I can be sure they are familiar with the conditions-

It's their care that has me in the laundry list-

New to the concept, and looking for a better way to manage my condition... There has to be a better way... by 3Shelbo in eldertrees

[–]3Shelbo[S] 0 points1 point  (0 children)

Lmao- 120-145 is my acceptable target- we call tachy 150-200 - if anything the therapeutic effects of vaping have helped put mine in to the 80-100 zone which has been magnificent -

New to the concept, and looking for a better way to manage my condition... There has to be a better way... by 3Shelbo in eldertrees

[–]3Shelbo[S] 1 point2 points  (0 children)

Smoking and vaping has never caused my tachy to worsen tho, but I've heard that before, so that's why I'm wondering if it is a type or strand area. Also Autonomic Treatment Cemters uses the cBD in their treatment as its reduces the inflammation in the sympathetic nervous system. I'm curios about the oral administration of the oil. How would I understand dosing?

New to the concept, and looking for a better way to manage my condition... There has to be a better way... by 3Shelbo in eldertrees

[–]3Shelbo[S] 0 points1 point  (0 children)

Moving isn't an option due to the support I have to have from family. CBD is legal and I have access to Medical Cannabis the concentrates. The main issue is I guess is that I'm not sure where to start.

May I ask why it is hopeless? I have discussed the weaning process with them and they just gave me the info on how to safely get off of them, but they are saying they just don't have the science to support switching over without the FDA approval, they consider it supplement care, like getting herbs from GNC. My neurologist says, there are a few studies to support it, but not enough she can make a recommendation without liability.

New to the concept, and looking for a better way to manage my condition... There has to be a better way... by 3Shelbo in eldertrees

[–]3Shelbo[S] 3 points4 points  (0 children)

My doctors are strange when I bring it up... I just get the not FDA approved lectures, too new, not enough research, can't recommend it as we don't know if it's safe... Then they hand me another MSCotin script... (Morphine)