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-   -   cbd oil and Lion's Mane (https://www.neurotalk.org/peripheral-neuropathy/227130-cbd-oil-lions-mane.html)

icelander 10-08-2015 01:06 PM

cbd oil and Lion's Mane
 
Recently someone here put up a thread on CBD oil and a blog from two folk with fibromyalgia and SFN and used Bluebird Botanicals for CBD oil. So I decided to try it. I got my sample supply three days ago and I've been taking 15 drops three times a day. So far it's been a success but I want more time to confirm it. I've cut my Gabapentin dose in half replacing it with the oil. Last night for the first time ever I was 95% pain free in bed. I was beside myself and quickly fell asleep and slept for 6 hours pain free.

This morning my friend told me about Lion's Main mushrooms which contains compound called Erinacines which are isolated from the fruiting body and Hericenones isolated from the mycelium. These two compounds are unique in that they easily pass the blood brain barrier. They have been shown to stimulate production of nerve growth factors (NGF). Supposedly there are numerous studies verifying this. (I'll do more research) This also improves memory and no mention of side effects. So I just wanted to put it out there in case you were interested. I'll get some on tuesday and I'll share any results over time.

Much love to you all. :hug:

Marlene 10-08-2015 02:43 PM

Thanks
 
I've wondered if they would work....how did you decide on which one to try?

icelander 10-08-2015 02:52 PM

Quote:

Originally Posted by Marlene (Post 1176386)
I've wondered if they would work....how did you decide on which one to try?

Guesswork. I tried the CBD Complete. I'm not ready to fully endorse it just yet. I'll give it 10 days to decide if I'm buying more.

KnowNothingJon 10-08-2015 03:29 PM

Was that available nationwide, the formula you tried, or only in legal states? Either way I am very excited for you.

icelander 10-08-2015 03:55 PM

Quote:

Originally Posted by KnowNothingJon (Post 1176400)
Was that available nationwide, the formula you tried, or only in legal states? Either way I am very excited for you.

Thank you. They ship to all states and overseas. There is no THC (psychoactive properties) in this oil and it's derived from Hemp rather than the female MJ plant. Hemp is used to make paper, clothing, etc. It's not as expensive as I feared and so worth a try.

baba222 10-08-2015 08:07 PM

Could you please share and be more specific with dosages and times, etc.

My SFN has continued to progress.

TIA

icelander 10-08-2015 08:11 PM

Quote:

Originally Posted by baba222 (Post 1176451)
Could you please share and be more specific with dosages and times, etc.

My SFN has continued to progress.

TIA

Like Gabapentin I take it three times a day and 15 to 20 drops each time. The 20 is at night. You'll (and I) need to adjust for effect but the 15 drops is their general starting point. You might need more or even less. If it works for you that is.

So I take a dose at about 7am then one at 3 or 4pm and then the last one before bed at about 11 pm. I don't think the timing is critical.

icelander 10-08-2015 09:06 PM

Today was a good one for me. No noticeable burning or cramping today which again is unusual. We shall see about the night. I want to add that this is only one part of a comprehensive program that I'm doing. Like I said however I've cut the gabapentin in half and if this continues in a week I'll cut it down to 600 and then 300 and hopefully 0/

But it might be wishful thinking as this is only the 4th day. It's encouraging that it seems to be working a little more each day. I'm prone like many to the placebo effect and it usually takes a few days to a week to get past that.

I'd like to speculate on the Placebo effect. If it happens and it does to me then it must be that some of what is going on is psychological. And then the massive attack on my anxiety and fears by using relaxation cds several times a day is going to have great effect. Which it seems to have been doing for me. My symptoms even before the CBD oil have been decreasing for about two or more weeks now. That's a very good indication that they are having good effect on my disease. And I feel emotionally pretty darn good these days.

KnowNothingJon 10-08-2015 09:33 PM

Well, whatever is working may it continue on!

bluesfan 10-08-2015 11:30 PM

Thanks icelander for sharing your experience with the CBD oil (and for being willing to try something different from orthodox meds).

I'm interested in finding analgesic alternative's as many conventional painkillers I either react badly to or I'm restricted from use due to interactions with my other meds. Basically at the moment all I can take is paracetamol :rolleyes:

I did a search for CBD oil interactions with hydrocortisone (one of my main meds) and came across these articles which I thought might be of interest to others following this thread:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2503660/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3165946/

Just out of curiosity are you expecting any flare-up as a result of reducing/stopping the gabapentin?

Look forward to reading about your progress.

icelander 10-09-2015 12:37 AM

So far I've had no flaring, just the opposite, although it's only been a few days and more time is needed to see just how far and how much this will help.

Personally I have some cognitive dissonance around the medical profession and big pharma. If I can quit supporting them I'd love that as I think they often do a grave disservice to many people all in the name of making more and more $$ no matter what the cost to the patient. Of course this is not a blanket condemnation of the whole of the medical establishment but as I said enough cognitive dissonance for me to want out if possible. Not to mention the drastic reductions in so called side effects of most herbal substances. And the truth is IMO that some of them work better than pharm meds. And it's growing. Not fast enough for me but it is happening. And I'm lucky to have chosen Oregon as my home state. I fell in love with my little town in the Mountains and have never looked anywhere else. I love this state for many reasons.

baba222 10-09-2015 11:12 AM

I went on the web site.
I found what you ordered-edited.
Am considering it too.
TIA

icelander 10-10-2015 09:29 AM

Well I was flaring last night likely due to the quick reduction of the gabapentin. I took a double shot of cbd oil and some kratom and it settled down by bed time. I'm hanging tough so far as I really want to get off the gaba. I'll take it more slowly from here on out.

icelander 10-11-2015 07:39 AM

Last night I was flaring again. Much worse this time. I broke down and took my full dose of gabapentin. I'm ok so far this morning. So cbd oil may or may not be the minor miracle I always talk myself into hoping for. I may need to increase the dose dramatically. I've been taking only the recommended starting dose and occasionally doubling it. So there is that, and I may have done too drastic of a drop in my gabapentin dose. Or it's just another minor player in the tool kit. It does seem to help but I can't say how much yet due to all the variables. But I admit to some disappointment at the events of last night. More to come.

mrsD 10-11-2015 07:45 AM

Quote:

Originally Posted by icelander (Post 1176874)
Last night I was flaring again. Much worse this time. I broke down and took my full dose of gabapentin. I'm ok so far this morning. So cbd oil may or may not be the minor miracle I always talk myself into hoping for. I may need to increase the dose dramatically. I've been taking only the recommended starting dose and occasionally doubling it. So there is that, and I may have done too drastic of a drop in my gabapentin dose. Or it's just another minor player in the tool kit. It does seem to help but I can't say how much yet due to all the variables. But I admit to some disappointment at the events of last night. More to come.

I believe you will need to taper off completely, the gabapentin.
Then you will discover more clearly the effects of the CBD oil.

There can be a withdrawal period with gabapentin tapers, which may result in increased pain perception.

icelander 10-11-2015 08:01 AM

Quote:

Originally Posted by mrsD (Post 1176876)
I believe you will need to taper off completely, the gabapentin.
Then you will discover more clearly the effects of the CBD oil.

There can be a withdrawal period with gabapentin tapers, which may result in increased pain perception.

So I have heard. I'm going to go down more slowly. Thanks for the encouragement to keep going.

madisongrrl 10-11-2015 11:48 AM

Quote:

Originally Posted by icelander (Post 1176877)
So I have heard. I'm going to go down more slowly. Thanks for the encouragement to keep going.

Every time I've been tapered on/off Gabapentin, doctors told me to do 300 mg every 5 days. I would imagine that tapering at even slower than this recommendation would be helpful. I'd maybe even try reducing it only by 100 or 150 mg every 5 days, if you can get your hands on 100 mg tabs or cut 300 mg tabs in half.

icelander 10-11-2015 06:10 PM

Quote:

Originally Posted by madisongrrl (Post 1176909)
Every time I've been tapered on/off Gabapentin, doctors told me to do 300 mg every 5 days. I would imagine that tapering at even slower than this recommendation would be helpful. I'd maybe even try reducing it only by 100 or 150 mg every 5 days, if you can get your hands on 100 mg tabs or cut 300 mg tabs in half.

That's my new plan. I'm fine today, thank god. That was scary last night and I wasn't expecting that. I did a search on getting off gabapentin and I read enough horror stories to convince me that I want off and I need to take it slow.

KnowNothingJon 10-12-2015 02:41 PM

I had a bad time on gabapentin but not so on Lyrica, until I did. So I titrated off, really bad horror stories there too.

I did have increased symptoms and still do to an extent. Lyrica did a marvelous job on the buzzing, but the side effects were too much.

While it is possible you will have the same experience as you have read about everyone is different. I hope you have all the benefits of the positive stories and minimal effects of the negative stories.

I look forward tothe further chronicles of cbd oil.

Jon

icelander 10-12-2015 05:28 PM

Quote:

Originally Posted by KnowNothingJon (Post 1177122)
I had a bad time on gabapentin but not so on Lyrica, until I did. So I titrated off, really bad horror stories there too.

I did have increased symptoms and still do to an extent. Lyrica did a marvelous job on the buzzing, but the side effects were too much.

While it is possible you will have the same experience as you have read about everyone is different. I hope you have all the benefits of the positive stories and minimal effects of the negative stories.

I look forward tothe further chronicles of cbd oil.

Jon


Well I'm definately flaring today. I've gone back to my full dose and will try later to see if I can come off it but not now. The CBD oil is having trouble handling this one. And so it goes in the life of the SFN prisoner. Some times it's hardly a life but I try to keep it in perspective. I have a lot of good days so I guess I'll have to take a few that are not. As long as it's a few I'm good to go. If (when) it ever becomes a lot that will be a game changer for me.
The future does not look that interesting from here on out. Just a long and likely fruitless struggle. I was kind of hoping for a different kind of retirement. :p

KnowNothingJon 10-12-2015 06:48 PM

I hope that flare mellows out. So sorry to read that. I can fully empathize though.

I know you said in some post you had never noticed a weather connection. Anything out of the ordinary or perhaos different than the past week going on today?

icelander 10-12-2015 09:29 PM

Quote:

Originally Posted by KnowNothingJon (Post 1177170)
I hope that flare mellows out. So sorry to read that. I can fully empathize though.

I know you said in some post you had never noticed a weather connection. Anything out of the ordinary or perhaos different than the past week going on today?


Actually it's been one of our picture perfect late summer days here. Temps around 80 and not a cloud. Should last all week. I'm sitting here inside thinking about all the mountain lake fishing I'd be doing were I well. It all seems like someone else's past now. It's so far away from me. :eek:

Thanks for your support. I'm feeling a little better at the moment even with the flaring. A combo of gabapentin, kratom, vicodin, and cbd oil. I might even be able to sleep. I have ambien but I hate the stuff.

One of the nastiest things besides the burning for me is that I get numbed out areas on my face and upper arms. It's almost like a mask and feels so weird. The tightness. Fortunately none on my face has pain yet.

And on and on I could go but I'm teaching myself not to dwell on the stuff I can't fix. And it's time for another relaxation CD. The interesting thing is that they are in part hypnosis and when I get into the zone, even with the flaring, for the time I'm in trance there is very little pain and a fair amount of bliss like feelings. Sometimes I feel like I'm off the bed floating. I wish I could stay there permanently. But eventually you gotta get to the bathroom and do the dishes. :(:winky:

baba222 10-16-2015 02:08 PM

Quote:

Originally Posted by icelander (Post 1177200)
Actually it's been one of our picture perfect late summer days here. Temps around 80 and not a cloud. Should last all week. I'm sitting here inside thinking about all the mountain lake fishing I'd be doing were I well. It all seems like someone else's past now. It's so far away from me. :eek:

Thanks for your support. I'm feeling a little better at the moment even with the flaring. A combo of gabapentin, kratom, vicodin, and cbd oil. I might even be able to sleep. I have ambien but I hate the stuff.

One of the nastiest things besides the burning for me is that I get numbed out areas on my face and upper arms. It's almost like a mask and feels so weird. The tightness. Fortunately none on my face has pain yet.

And on and on I could go but I'm teaching myself not to dwell on the stuff I can't fix. And it's time for another relaxation CD. The interesting thing is that they are in part hypnosis and when I get into the zone, even with the flaring, for the time I'm in trance there is very little pain and a fair amount of bliss like feelings. Sometimes I feel like I'm off the bed floating. I wish I could stay there permanently. But eventually you gotta get to the bathroom and do the dishes. :(:winky:

Any news with the hemp oil working?

baba222 10-17-2015 05:44 PM

So, I bought the CDB complete oil.
Tried it this afternoon( 15 drops )
No changes. Will try again before bed.

pinkynose 10-17-2015 05:58 PM

Quote:

Originally Posted by baba222 (Post 1178127)
So, I bought the CDB complete oil.
Tried it this afternoon( 15 drops )
No changes. Will try again before bed.

Thanks for posting. I bought it also and will start the middle of next week. Please let me know if it has any effect on your sleep. I had tried a different one that gave me good energy but I couldn't sleep. I am a troubled sleeper under the best of circumstances so that doesn't necessarily mean anything....

icelander 10-18-2015 06:45 PM

Quote:

Originally Posted by pinkynose (Post 1178131)
Thanks for posting. I bought it also and will start the middle of next week. Please let me know if it has any effect on your sleep. I had tried a different one that gave me good energy but I couldn't sleep. I am a troubled sleeper under the best of circumstances so that doesn't necessarily mean anything....

I have found that I've needed much higher doses for reasonable effect. 15 did little unless I take it maybe 4 or more times a day. I often use 45 drops at a time and have found it more helpful for pain and sleep.

pinkynose 11-15-2015 10:06 AM

I started CBD Complete today!
 
I began with 5 drops this morning. I will take 5 more drops early afternoon. I know 15 drops is the beginning dose, however I can never take full amounts because I am very petite. I do not want to take any too close to bedtime for now. I will gradually up my dose to 15 drops as long as it doesn't interfere with sleep. I am sorry it took me so long to start but hopefully I will have good information to share next Sunday :)

pinkynose 11-16-2015 01:56 PM

Sorry guys but after only 1 day I'm putting the CBD oil on the shelf. I'm having a horrible flare and although I can't imagine 10 drops of CBD oil could be the cause I am not going to continue with this product for now. I had been having a 3 week almost symptom free run and last night I was burning, itching and twitching. :eek:

janieg 11-16-2015 08:08 PM

Ugh. Sorry to hear that.

icelander 11-25-2015 01:27 PM

Quote:

Originally Posted by janieg (Post 1183967)
Ugh. Sorry to hear that.

I have found cbd oil to be of minimal help internally. It does help some however. It does seem to work better for me topically as a salve on my worst burning areas. So anyone might try that.

HEIDGAR 07-02-2020 07:43 AM

Quote:

Originally Posted by icelander (Post 1176371)
Recently someone here put up a thread on CBD oil and a blog from two folk with fibromyalgia and SFN and used Bluebird Botanicals for CBD oil. So I decided to try it. I got my sample supply three days ago and I've been taking 15 drops three times a day. So far it's been a success but I want more time to confirm it. I've cut my Gabapentin dose in half replacing it with the oil. Last night for the first time ever I was 95% pain free in bed. I was beside myself and quickly fell asleep and slept for 6 hours pain free.

This morning my friend told me about Lion's Main mushrooms which contains compound called Erinacines which are isolated from the fruiting body and Hericenones isolated from the mycelium. These two compounds are unique in that they easily pass the blood brain barrier. They have been shown to stimulate production of nerve growth factors (NGF). Supposedly there are numerous studies verifying this. (I'll do more research) This also improves memory and no mention of side effects. So I just wanted to put it out there in case you were interested. I'll get some on tuesday and I'll share any results over time.

Much love to you all. :hug:

Hi Icelander!
did you try cbd oil and lion's mane together? did it work? if not, did the cbd oil work in the long run. it has been 5 years since your last post. so I wonder. Thank you for your reply
I have been prescribed nortriptyline (I haven't taken because I'm trying to find something more natural) for burning and pain in upper back and shoulders, also carpal tunnel. I tried CBD oil and cream and it helped but it is not perfect of course.
I want to try lion's mane with the cbd oil. do you have any recommendations?
did you try acupuncture at any point?

caroline2 08-08-2020 04:09 PM

Just discussing Lions Mane with a member re: MS and now find it's used for Neuropathy as well, makes sense.... I have been using Inosine but believe I'll give Lions Mane a trial and we never know until we try. I'm not into CBD and have tried various kinds, topicals and drops, but not enough relief to continue.

There is lot of info on L.M. for neuropathy, so just do some searching..I just have.


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