Living with Neuropathy - Welcome to the group

@jakedduck1 @sunnyflower i feel very strongly about lamictal/lamotrigine. While on it I first developed a rash, next time blisters started appearing on my neck and the ER doc wat bed as they spread rapidly down my arms and torso. He showed me a pic on his cell
And said it was flesh eating bacteria nothing he could do pumped me full
Of Benadryl and sent me home 8 hours later. Then the seizures started and my psychiatrist still said to stay on my lamictal. After one seizure I had to crawl like a snake to get around my house and laid on the door jamb to let my dog pea. After a week no exaggeration I could finally recite the alphabet and read some words. It took many weeks to learn to read again. I simply lost knowledge of some letters of the alphabet and couldn’t sound out words. I then started flopping on the floor seizures with still having to crawl like a snake that lasted for days. I stopped
The lamictal and have been seizure free for 3 years as of April 2021. My psychiatrist never agreed with me.

@sunnyflower
Here are some seizure meds that can cause Neuropathy.

Dilantin/Phenytoin
Phenobarbital
Tegretol/Carbamazepine
Depacote/Valproic acid
Trileptal, Oxtellar XR/Oxcarbazepine
Lamictal/Lamotrigine

I believe that Neurontin/Gabapentin may also contribute to Neuropathy just like some seizure meds have increased seizures in some people.

Take care,
Jake

@bustrbrwn22
Okay, now here’s something that I almost didn’t believe when I first saw it…

Different foods have what’s called an ORAC score that measures antioxidant activity.

The higher the score, the better that food fights free radicals in your body.

Now get this…

Broccoli has an ORAC score of 890…
Kale has an ORAC score of 1,770…
But raw cacao powder has an ORAC antioxidant score of 95,500.
That’s nearly 107X MORE free-radical fighting-power than broccoli!
Don't feel guilty about eating chocolate.

Jake

Hi there Jake. I have almost 500 emails in my neuropathy group! Yikes, I will never catch up! More poor health and more self care for it takes away a lot of time out of the day! I've had neuropathy for a long time before I took Gabapentin for it. I used to make my own CBD from real CBD oil at the dispensary but it took a long time to make 90 or 93 capsules 4 the month. It didn't seem to be helping. I've used the treatment plan that dr. Alan Frankel from greenbridge Medical in Santa Monica California gave to me. Anyway I couldn't take my pain anymore so acquiesced to use Gabapentin. It really does help the brain perceive pain to be a little more doll and since without it might being was intolerable and I guess really still is a lot of the time, in spite of the many side effects from the medication that I can't stand, I stay on it and even consider increasing when I can't take my pain anymore. I'm at a low dose 300 mg 3 times a day. Some people are over 3,000 mg. I hope you're doing well and I appreciate the list of medications you sent to me that can cause neuropathy or make it worse. I definitely will give them much consideration. Take care of yourself! Sunny flower

Hi there Jake. I have almost 500 emails in my neuropathy group! Yikes, I will never catch up! More poor health and more self care for it takes away a lot of time out of the day! I've had neuropathy for a long time before I took Gabapentin for it. I used to make my own CBD from real CBD oil at the dispensary but it took a long time to make 90 or 93 capsules 4 the month. It didn't seem to be helping. I've used the treatment plan that dr. Alan Frankel from greenbridge Medical in Santa Monica California gave to me. Anyway I couldn't take my pain anymore so acquiesced to use Gabapentin. It really does help the brain perceive pain to be a little more doll and since without it might being was intolerable and I guess really still is a lot of the time, in spite of the many side effects from the medication that I can't stand, I stay on it and even consider increasing when I can't take my pain anymore. I'm at a low dose 300 mg 3 times a day. Some people are over 3,000 mg. I hope you're doing well and I appreciate the list of medications you sent to me that can cause neuropathy or make it worse. I definitely will give them much consideration. Take care of yourself! Sunny flower

@sunnyflower
I took the maximum dose (3600mg) of Gabapentin, although I took the brand name Neurontin but it didn't help my seizures or Neuropathy. My brother currently takes 3600mg of Neurontin and he gets some relief. If it’s helping you, perhaps you might consider increasing the dose to see if it's more effective unless side effects preclude it.
Take care,
Jake

@sunnyflower Hello, Sunny flower. I've missed you. Hope you're better and didn't suffer all this time with the vaccine side effects. My reactions lasted about 18 hours, then when fever broke, so did all the problems and I began to improve. No fun, but I know for sure I have antibodies in this body! A good thing.....

I can't wait to get your response to my post to you several days ago, Lady, when you were discussing the posh, funky new rollater your husband just put together for you. Well, I went nuts reading that and immediately went online and bought one for myself. We live, I think, around the world almost from each other, so won't be 'knocking' into you, but wouldn't matter. We'd just end up in a race or whatever....

I hope you are better and energy is up. We're getting into the lovely time of year for flowers......let me know how you're doing and after you read my message. We really are 'sisters in 'bling'...Blessings your way and you get better and better! elizabeth in Florida

Hello Elizabeth! Thanks for reaching out! I have over 500 emails from my Connect groups. I am so far behind I'm not seeing people's messages to me. I'm don't want anyone to think I"m ignoring them!

I haven't been feeling well for a long time now so I have even more limited opportunity to talk to people on Connect. I feel worse since my 2nd dose of Moderna. No fever just malaise.

Over time my neuropathy is so much worse. I have it from head to toe. Burn/sting/numb/pins/needles. Only ice gels help. I sit w/heat at my feet, thighs and hands, and ice on my knees and lower legs. Tucked under my winter weight down comforter. Ug, stuck to my bed most of the time. I have Raynaud's disease so between that and my neuropathy, I am very hot and cold in places, sometimes at the same time!! Burn so hot it feels cold. Or wait, is it the other way around? Oh my!

I have several diseases as well and am very weak. No complaints; just info.

I am a woman of faith and God's ever-presence, comfort, and peace through Christ which transcends all understanding (Philippians 4:7), is what gets me through. Just the right verses at the right time!

Thanks you for reaching out! I enjoyed reading your message about the rollator, etc. I live about 25 minutes north of Seattle. Do you live in Florida? I thought I read that but can't find it or recall. I hope the rollator works well for you.

I also have severe osteoporosis and have broken 3 pelvic bones, a rib, etc. so am really not supposed to life my walker. I can't slide it out of the car but not hoist it up into the back of the car. I can almost always find someone to help.

I hope and pray the very best for you! Warmest wishes, Sunnyflower

Thanks Jake. Yes, I think about increasing my Gabapentin dose every day. I think it works somewhat; makes my pain tolerable most of the time. However, I could do much better. I just can't stand the side-effects; my balance is off so bad I almost fall every time I turn around. My memory is terrible since the Gaba. Thoughts leave my mind even before I finish thinking them. It's embarrassing! There's more. Ug! I'm also on morphine; Kadian, the kind reserved for cancer etc. patients; rarely given. It's a long-acting morphine. It doesn't take away pain, just makes it tolerable. But not always. Anyway, my faith gets me through. God gives me just the perfect scripture verses that I need at the right time. Were it not for His ever-presence, comfort and peace of Christ that transcends all understanding (Philippians 4:7), and my hope for things to come, I wouldn't have made it this far!!!!!!! Many blessings to you, Sunnyflower