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Living with Polyneuropathy CIDP, GBS, & CMT

Am I losing my marbles?


#1

I don’t know about everyone else, but there are times when I think I’m losing my marbles. Sometimes while doing simple tasks I feel like I’m walking around in circles and wondering what I’m doing. I am unable to concentrate or process simple procedures. This week I went grocery shopping and got so confused I finally had to check out and go home. What the heck?


#2

Perhaps the confusion is a result of medications and not an indication of marble loss! Consider what else might be involved besides the marble losing! I’m not aware of research linking cidp to brain malfunction.
I’m sure that my marble loss is related to pain management efforts including fentanyl, hydro codone and the green herb medicine. I hope you are able to reclaim your ability to focus on the task younare working on. Focus and deliberateness. Bless you and heal you! Bill


#3

Hi Buster, I had forgotten all about that phase until I read your message. I used to be like that. I wasn’t on medication but it was the awful tiredness I used to have which has gone now I’m pleased to say and I hope that you get that function back soon.

I like to read in bed but as I’m tired at that time I’ve cut out books with lots of characters but again, hopefully I can soon get back to my Jeffrey Archer books.

Keep positive.

Mary Denmark


#4

Hi Bill, maybe some of my trouble stems from over medicating with the green herb as a younger man! Lol!


#5

Wouldn’t be a bad idea for a bunch of us to take a break from this s*** we deal with every day and get together for a green herb fest. I’m a sixties guy so it’s only fair for me to supply the lava lamps and bean bag furniture like in my first apartment. Someone might even bake some brownies. ;-).


#6

Secondchancer, count me in!


#7

I d9nt knòw what causes it, but being a “young” 70, assume it to be age related. Glad to hear that it may be disease related - meaning it may go away as I heal.


#8

I had a similar thing on gabapentine and Lyrica. Right down to things flying around the room, etc. Got off of those drugs real fast…


#9

I’ll bring my Dark Side Of The Moon vinyl.


#10

“Groovy!” Anyone got bongos?? Ladies, don’t forget to wear flowers in your hair. Anyone arriving in a VW Microbus admitted free.


#11

Right on, my brother!


#12

Loved that album but Highway to Hell is mine!


#13

My CIDP started one year post back surgery with screws, spacers and wires were put into my back. I always thought my CIDP was a result of that surgery; but too much green herb could be a culprit too.
Study by State of CA showed the pain relief effect of THC was particularly effective at decreasing peripheral nerve pain. Bingo me for foot and leg pain. I’ve cut hudrocodone intake by 50%! I apologize for advocating the use of illegal stuff. Please forgive me, if this offends anyone.


#14

Interesting to me that several of you reference green herbal use. I was diagnosed with CIDP 4 years ago, and thankfully have been able to keep it reasonably at bay with weekly infusions of 35 grams Gamulex via IVIG, once we knew what we were dealing with. I have smoked weed for 40 years, and live in Colorado where it is not only legal, but available in amazing quality, especially medicinally. My neurologist never inquired about cannabis use, but my first symptoms appeared 5 years ago immediately after a crazy, long weekend of partying like Bob Marley. Is regular/heavy marijuana use prior to CIDP a common denominator with others?

Peace & Blessings!


#15

Check carefully for Drug and Supplement Interactions. For 5 years I suffered with forgetfulness, confusion such as when approaching a traffic circle not being able to remember which way to turn to my destination. A feeling of out of body, brain fog. Imbalance, even to being on crutches to prevent falling. In the end it turned to be Lyrica combined with taking St. Johns Wort. I only discovered it by chance when reordering St. Johns wort on vitacost and a drug interaction warning popped up and I saw Lyrica in the list. It takes a long time for the St. Johns Wort to completely wear off, 3 weeks or more. But what a difference.


#16

Wish I lived somewhere like Colorado so at last I could try it for some relief
Back in the day…I was just enjoying it’s other benefits


#17

Recently my son (17) and wife advised me that my personality changes when using pot were unacceptable, and they wanted me to know that my usage was definitely affecting/effecting our relationships. I was initially mad at them thinking they just didn’t understand my plight and screw them!
Then after careful reflection and my deep love of family, I became very upset with myself that what I was doing to feel better made them feel worse! I didn’t want to stop using, but I didn’t want my relationships to suffer at the same time. So I ha fed over my supply and devices for vaping and let the family know that they were more important to me than anything. I quoted the line from a movie “I choose us” and gave up my daily chronic use.
Whoever said it wasn’t addictive never smoked a lot and then quit. Insomnia, irritability, pissed off, mad and higher pain levels all occurred immediately. After a week or two the insomnia was better and after ratcheting up my hydro intake my pain level was more manageable.

After a month I asked the fam how I was doing and they both said 100% better. I still don’t understand why the usage made me more difficult to live with when the reputation is more calming effect. Through the grace of my creator the urges to pick it up again have reduced. If it were not for the family’s objections, I would still use it for the beneficial help it provided. But like I told them “I choose us” I think it’s a Nicholas Cage movie titled “family man” but that’s a guess. I pray that you all have reduced pain, reduced cidp symptoms and brighter days ahead.
Your Brother In CIDP. Bill Scott


#18

Hi Bill,
Thank you for that info bro, I’m new here, I started using CBD awhile ago, the rub, the tongue drops and the vape, think it might work for me, not sure yet though (Low resistance to meds!)
So, I’m low on the usage charter! I smoke cigarettes though, so I’m clearly categorized as one of the social degenerates!
Impolite of me to ask I know, but did it help with the pain??

Pete


#19

My pain was reduced with canibis. Yes. Not with cbd oil


#20

Bill,

Thanks, good info.

Pete.