CBD

[Ehle, Dave]

Has anyone tried CBD for symptom management?  Has it helped?  The Drs I have asked tell me there isn't any research on its usefulness, and I figure there might be some experience to be found here.

[donjehle]

It has been a month since you posted this, Dave, and I see that no one has responded.  Have you tried CBD for symptom management?  If so, have you seen any difference?  I have relatives who use CBD for their pain, and they claim it really helps them.  But I have no idea how CBD would help with AN symptoms.  I'm skeptical that it would help with balance issues, but I really don't know.  Would it help with tinnitus?  I don't know, but I haven't heard of anyone having tried it for that.  Would it help with hearing loss?  I don't see how it could, but I don't know.  Would it help with headaches?  That seems to be the best option, in my opinion, but then I don't know.  If you have tried it, Dave, please let us know what your experience has been.

Thanks,
Don

[Ehle, Dave]

Hi Don! 

I have tried some, 3 or 4 drops of an oil, on 4 or 5 days, of a full spectrum CBD oil.  It has a high level of CBD, and negligible THC.  I am completely uninterested in getting high, and this stuff did not have any intoxicating effects.  I tried it several times during daytime hours, and several others at night.  I didn't try it while working, as I wanted to get a read on any strange effects first. 

I can't say that i have noticed any definite improvement in any of the various symptoms.  I was hoping that there would be an reduction in that sense of wonkyness in balance.  no such luck.  I don't have a lot of headaches, but I do have a degree of nausea, which has led to about 15 lbs of weight loss since christmas.  there may have been a marginal improvement with that and with appetite.  not the munchies.  I have had tinnitus for decades; if it had gone away I would have noticed.  Anxiety?  I didn't notice a change. 

If there has been a benefit it has been with sleep.  I think I have had a better sleep when I have taken it.  Could be pure placebo. 

At this point though I would say that its not worth the money.  Now this is all pre-treatment; I may try it again post treatment to see if there could be benefit in the recovery stage.  There is some medical support is using CBD in MS treatment, so perhaps in a post surgery (or radiation) brain healing up situation?  I will save some of what I have and give it a try.

[donjehle]

Thanks, Dave, for sharing your honest appraisal of your experience with CBD oil.  If it helps with having better sleep (even if it is a placebo effect) that might be a good thing, although I guess it depends upon the cost of the CBD oil.  And it sounds like you used some high quality stuff.

I like what you said about pre-treatment versus trying it again later post-treatment.  Who knows whether that would make a difference? But it certainly doesn't seem to hurt to try it (except in the wallet).

I know what you mean about losing weight.  I lost 20 lbs. since my initial diagnosis in November.  Mine has not been from nausea, however.  Food just does not taste the same as it used to for me.  I can taste food, but it all tastes sort of stale to me.  I have read about those who have had a metallic taste post-treatment, but all my food tastes stale, not metallic, and I'm just not interested in eating.  I don't know if adding any CBD oil would make it taste better or make it worse!

Anyway, I really appreciate you sharing your experience for the rest of who haven't tried CBD oil yet.

[Ehle, Dave]

I can understand what you mean about food.  It doesn't taste right at all.  I do get the more of a metallic taste than a stale one. Coffee!  it makes me feel sick and it tastes weird.  The other thing with food is the texture is all off too.  Well, I had a few pounds to loose, so I am not going complain too much. 

Any movement on treatment for you?

[donjehle]

You are right -- the texture of the food is a little off, too.  I don't receive any pleasure from eating my favorite foods anymore.

I get fitted for my CROS device later today.  I'm looking forward to being able to hear what people say on my left side (even though it will be in my right ear).  I hope it works well.

I also have a video conference set up with Doctors Link and Carlson from the Mayo Clinic later this month.  I will receive a second opinion from them regarding treatment.

What is the latest news regarding your situation?

I want you to know, Dave, that your thread motivated me to purchase some CBD oil and try it . . . . on my dog!  I hope it calms him down. 

Best wishes on your health and well-being!  I'm rooting for you!

[donjehle]

Thanks for sharing that in this thread, Michele!

Now you have me wondering if the lemon balm tincture could also calm down my puppy?  That would be amazing if it could help both of us!

[mwatto]

I take compounded melatonin and I also take lemon balm tincture (iHerb  herbPharm brand)  at night. I also take lemon balm in day x2 if stressed. At moment re supplements I take D3 K2, fucoidan (Prof Maruto says this will help re AN PAK-1 pathway) and bromelain and boswellia. I juice veggies such as beetroot, snow pea shoots, celery, carrot, apple, broccoli (high in sulfurophane) and have daily ginger shots with fresh blueberry or pomegranate. Other supps occasionally as needed. I also take antihistamine sometimes especially as it helps with the vx side effects I had. Lemon balm tincture has really helped with nerve pain, its anti viral, anti inflammatory, anti histamine.

[donjehle]

I appreciate your natural and healthy approach to it.  I take a number of supplements for overall health, but you have studied more into which ones can be beneficial for the AN.  Thanks for sharing!

[ChrisBowman]

I have personally tried using CBD for symptom management and it has been incredibly helpful for me. I would advise doing your own research and talking to a medical professional to make the best decision for your health, but it is definitely worth considering. I'm not sure if there's much research available, but I can tell you from my own experience that it has been an effective treatment. In terms of resources, I've had great luck finding cbd oil boston ma and I'm sure there are other good places to go as well. I hope this helps!

[donjehle]

Thank you, ChrisBowman, for making your first post on the forums!  And thank you for sharing your personal experience with CBD!

[mwatto]

I am having EXCELLENT results with a 3000 full spectrum CBD THC (around 13-16Percent). For past ten days no nerve pain and sleeping soundly first time since treatment 4 years agao no stabbing pain. Yes to this! I tried medical cannabis but it did not work- this is from a grower and the tincture worked from first night in. Also I can add on 2 mg melatonin (compounded) and that works well with it.

[SP]

Hi Michele ,

Happy 2023!
It's awesome that  you are getting such a great result from full spectrum CBD THC -- that is great news. Does it help with tinnitus too?

I am just starting on compound melatonin to help with sleep -- I hope it works...
any tips on where to source the full spectrum CBD in Sydney?

my best ,

Stella

[mwatto]

Happy New Year Stella! Yes in fact I think the grower is yr side- can you PM me on messenger so I can share with you? I am in Perth so he posted to me- it was a third of price of medical cannabis- and I am so impressed honestly! He is also very knowledgeable. I had no luck with medical cannabis at all big waste money for me- I can feel this tincture working from day one. He explained to me its full spectrum and has THC in it in the right ratio- no side effects at all- just pain free and better sleep.

Hey Stella- just an update I am now using CBN by Humacology (prescribed Australian brand ) and its really the best I have ever used. I combine it with melatonin for sleep. I am now also looking at their CBG which is THC. Excellent brand as has full spectrum terpenes in. Their customer service is also excellent. If you email me I will send you their catalog.

[adrianruther]

I'm so glad to hear that CBD has been helping with your symptoms! It's frustrating when doctors dismiss it due to a lack of research, but it's awesome that you found something that works for you.