Living with Neuropathy - Welcome to the group

I am so sorry to read of your multiple sufferings. You truly handle things so well, it is an inspiration. You also replied very quickly, especially for someone that has so many emails; so no need to apologize for the length of waiting times. I live right outside of Denver, Colorado. We are expecting a large snowstorm this weekend, so today I busied myself with getting a roast on. It is just my husband and myself so a roast will be more than enough for a few days.

Like you, I had some health issues prior to getting neuropathy. It seems that they were all under control until I had sepsis. It has been a few years ago, yet I haven't gone back to pre-sepsis health. Oh well, also not complaining just informing. My seizure disorder has done the worst. I now just have to expect waking up on the floor at times. It is what it is. I do have great physicians and they respond fairly quickly when I need new changes in my medication regime. Well, It looks like I have not done a good job of not complaining. So, I will close. I wish you the best of health or improving health anyway. Thanks for listening or reading my note,
Beth or Elizabeth, either one. will do.

@sunnyflower, @bethunger Helllo, Ladies. We 3 have many things in common, it seems. Sunny, when you mentioned Raynaurd's, I ck'd the mayo site and learned so much about it. What a horrid group of symptoms for you to deal with, and you live north of Setttattle! Not the warmest spot. Yes, I'm in Florida, Jax, north Fl. Atlantic Ocean, St. John's River, World Golf Village, TPC Golf Tournament, St. Augustine -oldest city in country....tropical weather w/touch of South Ga., a little winter, lots of humidity and quite warm summers. I live in air conditioning and require it, usually pretty cool. But, recently, I've been setting temp warmer, not doing as well this winter with any cool temps. My feet stay icey, even in warm weather at times, tough to warm up and wear socks now. When they do warm up, they're red and swollen and uncomfortable. Weird....feet are numb on bottom, toes and top of foot, ankle and my shins are numb. Hands stay icey most of time now also. Certain fingers more than others....lots and lots of pain and aching in both feet and hands. I noticed years ago my fingers actually hurt when I touch ice or pick up anything frozen, etc. Now, I just don't do it. It's extremely painful and causes me to jerk and skin to get pale, not white, and then when warm, just like the feet, they get red and swollen!

Sunny, I'm amazed and not pleased. Don't want nor need this addition to my health issues. POOH! I am keeping my home warmer now, and had some trouble staying warm this winter.....First time for that except when in cold climes.

I attribute all this to getting older. But, it's not. More to it and I will eventually chat w/one of my docs, which one? But, nothing to do at this point I doubt.....ideas? I have sarcoid autoimmune disease, epilepsy since I was 11, on most of the meds Jake discusses, but now after 60 years of nocturnal seizures and all that covers, especially include the societal attitudes 60--50 years agol That was so difficult for this young girl and woman. Beth, it seems you and I have that in common as well. But, after 5 days with eeg hooked up in Mayo hospital seizure floor, I found me seizures now are not epileptic. And, I have very few and very small seizures when I do. Always have been when sleeping. With petit mal during wake and other issues.

Now, I'm having frequent UTI and just over a bad infection w/sepsis. Since, my neuropathy is worse. Didn't realize the timing until I read Beth's message, but it hit me head-on. Haven't felt the same since. More numbness, more pain and discomfort.....

OK. That's it for now. Sunny, I can't lift and shouldn't at all the walker into or out of my car, but it's light enough I can if I must. I love it and pretty much leave it in the car since it's lighter. Your find has made me such a happy, wild and !crazy woman. Love the added fun and comments w/smiles.....needed so at this time.

Wow! Must stop....whole lower body is cramping like crazy.....need to get warmer, 'hop' in bed and snuggle in prenatal position with my kitty and get some sleep. Take some potassium. Melatonin, mj which helps everything be better and gets me good sleep, and enjoy thinking about this day.

You take care of yourself, Sunny, and no more broke bones! Beth, good meeting you a sister in lots of ways......sleep with pillows all around . I have king bed and sleep with 5 pillows on the sides and surrounding my head...in the middle-ish of the bed. No hubby now, son must take care not to get hurt. I've done these things for years and so far haven't been hurt in seizures.

Blessings, my friends. God is good, is in your hearts and covering your body with His love and grace and healing power. elizabeth (beth)

love Seattle! Fish market and aquarium and downtown of course.....had salmon every day when visiting.....chat soon. e.

@tigreyes2004
I was already taking a lot of seizure meds which affected my balance and Lyrica increased that. but my main problem was when I woke up my arm was paralyzed, it was stuck up in the air and I couldn’t move it. Also muscle pain which I didn't have on any other seizure meds. I didn’t gain any weight. I filed a complaint with the FDA.
If you have been on Gabapentin for a few months your side effect may improve but unfortunately not always. Good luck,
Jake

@ess77
You aroused my curiosity. If you’re not having epileptic seizures (abnormal electrical activity in the brain) what is your current diagnosis as related to these seizures/attacks.
Have your doctors suggested it is or could be PINES (Psychogenic non-epileptic seizures?) Do you get easily stressed or have anxiety or depression? Did your seizures begin with the @ess77
You aroused my curiosity. If you’re not having epileptic seizures (abnormal electrical activity in the brain) what is your current diagnosis?
Have your doctors suggested it is or could be PNES (Psychogenic non-epileptic seizures?)
Both Absences and nocturnal attacks/seizures are possible with PNES but not common. Did your Absences and nocturnal attacks start at age 11 or just one or the other? Did your absences continue into adulthood? Did any of your seizure medications ever control or decrease the number or severity of these incidence? Have they definitely ruled out sarcoid autoimmune diseaseas a seizure cause? Y Okay, the Inquisition is over.
Although rare S.U.D.E.P. (Sudden Unexpected Death in Epilepsy) is possible with Psychogenic nocturnal seizures. You might want to consider an anti-suffocation pillow and not having so many pillows around your head.
I wanted to invite you to participate in the Epilepsy/Seizure thread. Please join us here, https://connect.mayoclinic.org/group/epilepsy-2bb359/
See you there!
Take care of yourself,
Jake

@jakedduck1 Hello, Leonard!!! Well, I do feel like we're friends, from all your messages I've read and enjoyed . I didn't respond to you or join the discussions...interestingly....I think because I've been focusing so on other health issues, on enjoying so many wonderful folks on Connect, getting so much better with Mayo and lots of work, and epilepsy took so much energy all my life, I think I didn't want to give it any more precious energy. Can you understand that?

For my entire life, epilepsy was at the center of my life. It forced itself on me and in that place in my life. I hated that! I was only 11 when I had my first grand mal seizure, during sleep and I don't remember where I was. The first seizure I recall was being at camp when we lived in North Carolina, away for 2 weeks of fun and horses and lake swimming and new friends......after a few days of excitement, away from home for the first time, eating different foods, lots of elevated emotions and loss of sleep!!!!!! always a key element....I found myself off the top bunk where I loved sleeping, and on the floor, with gobs of faces looking down at me, so close and scary. Then, naturally, I was whisked off in an amblence to hospital for several days, then home and never away at camp again.

As you well know, it was frightening, physically devastaing causing many changes in my body and life, invaded all areas of my life. And, of course, my self esteem went into the basement. I was cute, fun, talented, pretty, and had lots of friends. Suddenly, I was scared of life, of what people were saying or thinking about me, that I was scary different, some friends and their parents were scared and avoided me. We as kids deal with these things on some level anyway as we grow, but epilepsy colored it all. And, it was then considered devil possession, evil. Think of that....what it does to the child and family....

So, you see, for me to discuss it even now is dificult for me. I've dealt with those feelings through thr years, more so recently, but memories are still there. Memories is an interesting subject. I've lost most of my childhood, and some adult memories. I think due greatly to the seizure medications over so many years. Beginning with dilantin and phenobarbitol. I was on them, in varying and increasing doses, for many years. That was the treatment. Well, Jake, those meds harmed me in many ways. My gums, teeth, thinking, emotions , personality and much more....then finally my liver functions were so wild and wonky when I was in hospital in my late 20's and docs thought I was an alcoholic! Had hepatitis and everyone had to suit up and wear masks in my room!

I didn't and don't drink alcohol. At that time, I might have a couple times a year have half a glass of wine or southern comfort w/something, couple of sips, but that's it. So, finally my family doctor determined this was a reaction to the seizure meds. I may be one of the earliest patients with that diagnosis. I was changed to another med and liver functions were normal! My personality improved as did seizure control, thinking, etc.

I had horrid experiences in hospitals through the years taken off one seizure med due to side effects or reduced seizure control......cold turkey stopping the med. I experienced withdrawal, often horrible, seeing spiders on the walls and on me and no sleep, emotions totally out of control, etc. I went through these experiences several times, used 6-7 different meds as they came out or as I needed a change.

Finally, when in my 40's I think, I started on Tegretol. It was a breath of fresh air, had fewer.....some, but fewer side effects. My personality wasn't affected much, seizures were well controlled. I've always had a seizure now and then, if I lost a lot of sleep or didin't eat well or too much junk, extreme emotional stress like divorce or whatever.......but they were much better on Tegretol. Fewer by far, no defecating or urinating during seizure, fewer after effects and could often go to work the day after. I thought Tegretol was a gift!

Then, after 20 years on Tegretol, I began to have more seizures and other side effects. It became serious and I was changed to Lamictal......gradually reducing the Teg and adding the Lamictal!!!! No hospital! No withdrawal!! Wonderful. Lamictal was good for me. Worked well with good results and few side effects for several years. Then, a couple years ago I began having more seizures, several monthly by the time I was seeing neurology at Mayo for possible MS. Balance, walking, tremors, etc for over 12 years w/no definitive diagnosis nor treatment.

Now, tapered off Lamictal and Lyrica and Neurontin and Oxycodone and 800mg ibuprophen 4X daily and other serious drugs - seizures, neuropathy, pain, nerve pain, arthritis/chronic pain/fibromyalgia, etc. I take 120mg cymbalta and will forever I hope as it truly helps reduce the pain, all over. I use MJ 1:1 tincture, CBD tincture and THC spray. and lotion. Wonderful!

Re sleeping: the pillows are a good safety addition. I use a c-pap so breathing is constant and not an issue. It was, severe apnea, but I love that c-pap and it works wonders. The pillows are also a bit on the sides, as I use them to protect my from a fall off the bed or hitting my head on the side table. You know, they are also quite comforting.

Seizure diagnosis.....I had multiple nocturnal seizures for several nights after meds taken away when in hospital last year at Mayo....I think these were and may have been for a few years psychogenic seizures. Don't know about sarcoid. Good question. I believe I did have epileptic seizures for most of my life. I have no indication yea or nay, but the eeg's and testing did show irregularities. The last 25+ years were filled with enormous emotional & physical stress as I oversaw my mother's altzheimer's care, with her daily while owning/running my shop for 10 years. Last 17 years, son disabled with dystonia and in his own living hell. I'm his cargiver. He's as of 2 weeks ago under the care of Mayo neurology, dystonia specialist! HOPE!

I will join the epilepsy thread, thanks for the invite. I can do it now. It's been quite a journey. I'm able emotionally now to deal with the shock and changes and am off so much 'stuff', doing much better all around. Still muscle issues, balance and such, but Requip/dopamine is helping so much!

Long message!!!! But, now you know the story. Enjoyed sharing with you, Leonard, this journey with epilepsy isn't one I share easily or often. You, sir, are special. You understand, really. You've been there.....blessings, Leonard. Keep up your fight and winning! You are remarkable, you know. elizabeth

@sunnyflower
How much Gapapentin are you taking now?
Hope you’re feeling better,
Jake

@jakedduck1 Hello, Leonard!!! Well, I do feel like we're friends, from all your messages I've read and enjoyed . I didn't respond to you or join the discussions...interestingly....I think because I've been focusing so on other health issues, on enjoying so many wonderful folks on Connect, getting so much better with Mayo and lots of work, and epilepsy took so much energy all my life, I think I didn't want to give it any more precious energy. Can you understand that?

For my entire life, epilepsy was at the center of my life. It forced itself on me and in that place in my life. I hated that! I was only 11 when I had my first grand mal seizure, during sleep and I don't remember where I was. The first seizure I recall was being at camp when we lived in North Carolina, away for 2 weeks of fun and horses and lake swimming and new friends......after a few days of excitement, away from home for the first time, eating different foods, lots of elevated emotions and loss of sleep!!!!!! always a key element....I found myself off the top bunk where I loved sleeping, and on the floor, with gobs of faces looking down at me, so close and scary. Then, naturally, I was whisked off in an amblence to hospital for several days, then home and never away at camp again.

As you well know, it was frightening, physically devastaing causing many changes in my body and life, invaded all areas of my life. And, of course, my self esteem went into the basement. I was cute, fun, talented, pretty, and had lots of friends. Suddenly, I was scared of life, of what people were saying or thinking about me, that I was scary different, some friends and their parents were scared and avoided me. We as kids deal with these things on some level anyway as we grow, but epilepsy colored it all. And, it was then considered devil possession, evil. Think of that....what it does to the child and family....

So, you see, for me to discuss it even now is dificult for me. I've dealt with those feelings through thr years, more so recently, but memories are still there. Memories is an interesting subject. I've lost most of my childhood, and some adult memories. I think due greatly to the seizure medications over so many years. Beginning with dilantin and phenobarbitol. I was on them, in varying and increasing doses, for many years. That was the treatment. Well, Jake, those meds harmed me in many ways. My gums, teeth, thinking, emotions , personality and much more....then finally my liver functions were so wild and wonky when I was in hospital in my late 20's and docs thought I was an alcoholic! Had hepatitis and everyone had to suit up and wear masks in my room!

I didn't and don't drink alcohol. At that time, I might have a couple times a year have half a glass of wine or southern comfort w/something, couple of sips, but that's it. So, finally my family doctor determined this was a reaction to the seizure meds. I may be one of the earliest patients with that diagnosis. I was changed to another med and liver functions were normal! My personality improved as did seizure control, thinking, etc.

I had horrid experiences in hospitals through the years taken off one seizure med due to side effects or reduced seizure control......cold turkey stopping the med. I experienced withdrawal, often horrible, seeing spiders on the walls and on me and no sleep, emotions totally out of control, etc. I went through these experiences several times, used 6-7 different meds as they came out or as I needed a change.

Finally, when in my 40's I think, I started on Tegretol. It was a breath of fresh air, had fewer.....some, but fewer side effects. My personality wasn't affected much, seizures were well controlled. I've always had a seizure now and then, if I lost a lot of sleep or didin't eat well or too much junk, extreme emotional stress like divorce or whatever.......but they were much better on Tegretol. Fewer by far, no defecating or urinating during seizure, fewer after effects and could often go to work the day after. I thought Tegretol was a gift!

Then, after 20 years on Tegretol, I began to have more seizures and other side effects. It became serious and I was changed to Lamictal......gradually reducing the Teg and adding the Lamictal!!!! No hospital! No withdrawal!! Wonderful. Lamictal was good for me. Worked well with good results and few side effects for several years. Then, a couple years ago I began having more seizures, several monthly by the time I was seeing neurology at Mayo for possible MS. Balance, walking, tremors, etc for over 12 years w/no definitive diagnosis nor treatment.

Now, tapered off Lamictal and Lyrica and Neurontin and Oxycodone and 800mg ibuprophen 4X daily and other serious drugs - seizures, neuropathy, pain, nerve pain, arthritis/chronic pain/fibromyalgia, etc. I take 120mg cymbalta and will forever I hope as it truly helps reduce the pain, all over. I use MJ 1:1 tincture, CBD tincture and THC spray. and lotion. Wonderful!

Re sleeping: the pillows are a good safety addition. I use a c-pap so breathing is constant and not an issue. It was, severe apnea, but I love that c-pap and it works wonders. The pillows are also a bit on the sides, as I use them to protect my from a fall off the bed or hitting my head on the side table. You know, they are also quite comforting.

Seizure diagnosis.....I had multiple nocturnal seizures for several nights after meds taken away when in hospital last year at Mayo....I think these were and may have been for a few years psychogenic seizures. Don't know about sarcoid. Good question. I believe I did have epileptic seizures for most of my life. I have no indication yea or nay, but the eeg's and testing did show irregularities. The last 25+ years were filled with enormous emotional & physical stress as I oversaw my mother's altzheimer's care, with her daily while owning/running my shop for 10 years. Last 17 years, son disabled with dystonia and in his own living hell. I'm his cargiver. He's as of 2 weeks ago under the care of Mayo neurology, dystonia specialist! HOPE!

I will join the epilepsy thread, thanks for the invite. I can do it now. It's been quite a journey. I'm able emotionally now to deal with the shock and changes and am off so much 'stuff', doing much better all around. Still muscle issues, balance and such, but Requip/dopamine is helping so much!

Long message!!!! But, now you know the story. Enjoyed sharing with you, Leonard, this journey with epilepsy isn't one I share easily or often. You, sir, are special. You understand, really. You've been there.....blessings, Leonard. Keep up your fight and winning! You are remarkable, you know. elizabeth

@jakedduck1 Hello, Leonard!!! Well, I do feel like we're friends, from all your messages I've read and enjoyed . I didn't respond to you or join the discussions...interestingly....I think because I've been focusing so on other health issues, on enjoying so many wonderful folks on Connect, getting so much better with Mayo and lots of work, and epilepsy took so much energy all my life, I think I didn't want to give it any more precious energy. Can you understand that?

For my entire life, epilepsy was at the center of my life. It forced itself on me and in that place in my life. I hated that! I was only 11 when I had my first grand mal seizure, during sleep and I don't remember where I was. The first seizure I recall was being at camp when we lived in North Carolina, away for 2 weeks of fun and horses and lake swimming and new friends......after a few days of excitement, away from home for the first time, eating different foods, lots of elevated emotions and loss of sleep!!!!!! always a key element....I found myself off the top bunk where I loved sleeping, and on the floor, with gobs of faces looking down at me, so close and scary. Then, naturally, I was whisked off in an amblence to hospital for several days, then home and never away at camp again.

As you well know, it was frightening, physically devastaing causing many changes in my body and life, invaded all areas of my life. And, of course, my self esteem went into the basement. I was cute, fun, talented, pretty, and had lots of friends. Suddenly, I was scared of life, of what people were saying or thinking about me, that I was scary different, some friends and their parents were scared and avoided me. We as kids deal with these things on some level anyway as we grow, but epilepsy colored it all. And, it was then considered devil possession, evil. Think of that....what it does to the child and family....

So, you see, for me to discuss it even now is dificult for me. I've dealt with those feelings through thr years, more so recently, but memories are still there. Memories is an interesting subject. I've lost most of my childhood, and some adult memories. I think due greatly to the seizure medications over so many years. Beginning with dilantin and phenobarbitol. I was on them, in varying and increasing doses, for many years. That was the treatment. Well, Jake, those meds harmed me in many ways. My gums, teeth, thinking, emotions , personality and much more....then finally my liver functions were so wild and wonky when I was in hospital in my late 20's and docs thought I was an alcoholic! Had hepatitis and everyone had to suit up and wear masks in my room!

I didn't and don't drink alcohol. At that time, I might have a couple times a year have half a glass of wine or southern comfort w/something, couple of sips, but that's it. So, finally my family doctor determined this was a reaction to the seizure meds. I may be one of the earliest patients with that diagnosis. I was changed to another med and liver functions were normal! My personality improved as did seizure control, thinking, etc.

I had horrid experiences in hospitals through the years taken off one seizure med due to side effects or reduced seizure control......cold turkey stopping the med. I experienced withdrawal, often horrible, seeing spiders on the walls and on me and no sleep, emotions totally out of control, etc. I went through these experiences several times, used 6-7 different meds as they came out or as I needed a change.

Finally, when in my 40's I think, I started on Tegretol. It was a breath of fresh air, had fewer.....some, but fewer side effects. My personality wasn't affected much, seizures were well controlled. I've always had a seizure now and then, if I lost a lot of sleep or didin't eat well or too much junk, extreme emotional stress like divorce or whatever.......but they were much better on Tegretol. Fewer by far, no defecating or urinating during seizure, fewer after effects and could often go to work the day after. I thought Tegretol was a gift!

Then, after 20 years on Tegretol, I began to have more seizures and other side effects. It became serious and I was changed to Lamictal......gradually reducing the Teg and adding the Lamictal!!!! No hospital! No withdrawal!! Wonderful. Lamictal was good for me. Worked well with good results and few side effects for several years. Then, a couple years ago I began having more seizures, several monthly by the time I was seeing neurology at Mayo for possible MS. Balance, walking, tremors, etc for over 12 years w/no definitive diagnosis nor treatment.

Now, tapered off Lamictal and Lyrica and Neurontin and Oxycodone and 800mg ibuprophen 4X daily and other serious drugs - seizures, neuropathy, pain, nerve pain, arthritis/chronic pain/fibromyalgia, etc. I take 120mg cymbalta and will forever I hope as it truly helps reduce the pain, all over. I use MJ 1:1 tincture, CBD tincture and THC spray. and lotion. Wonderful!

Re sleeping: the pillows are a good safety addition. I use a c-pap so breathing is constant and not an issue. It was, severe apnea, but I love that c-pap and it works wonders. The pillows are also a bit on the sides, as I use them to protect my from a fall off the bed or hitting my head on the side table. You know, they are also quite comforting.

Seizure diagnosis.....I had multiple nocturnal seizures for several nights after meds taken away when in hospital last year at Mayo....I think these were and may have been for a few years psychogenic seizures. Don't know about sarcoid. Good question. I believe I did have epileptic seizures for most of my life. I have no indication yea or nay, but the eeg's and testing did show irregularities. The last 25+ years were filled with enormous emotional & physical stress as I oversaw my mother's altzheimer's care, with her daily while owning/running my shop for 10 years. Last 17 years, son disabled with dystonia and in his own living hell. I'm his cargiver. He's as of 2 weeks ago under the care of Mayo neurology, dystonia specialist! HOPE!

I will join the epilepsy thread, thanks for the invite. I can do it now. It's been quite a journey. I'm able emotionally now to deal with the shock and changes and am off so much 'stuff', doing much better all around. Still muscle issues, balance and such, but Requip/dopamine is helping so much!

Long message!!!! But, now you know the story. Enjoyed sharing with you, Leonard, this journey with epilepsy isn't one I share easily or often. You, sir, are special. You understand, really. You've been there.....blessings, Leonard. Keep up your fight and winning! You are remarkable, you know. elizabeth

@ess77 Hello Elizabeth. My goodness, you've been to hell and back. You (and @jakedduck1) really do deserve a medal for your courage and tenacity.
I can relate to some of your journey because my middle son began to have seizures at the age of ten. Three years later, after many seizures which the doctor called atypical of epilepsy, it was discovered he had a malignant brain tumor. After surgery, he had radiation therapy, and the worst part for him as a young teen, was losing his beautiful long red hair. That was in the Seventies, when long hair was so crucial for teenaged boys. Eventually, we got him a nice red-haired wig, which he promptly lost when diving into the pond in a field where we lived. The local police diving team recovered it! My boy has continued to have seizures to this day, because of scar tissue from the surgery. We've had lots of heartbreak over him.

What gratitude I have for you @ess77 and your ability to record and share your unique and pretty challenging life. Were you ahead of medications that could be more helpful? What clinicians hung in there with you? Would you be your own advocate or did you search for trust and care from your medical providers?

I can see why you were happy and chatty and everyone’s friend. You still are.

And I am glad you have been able to design a medical cannabis protocol that fits you to a tee and relieves you from dealing with side effects and miss-matched medications.

We need to place you on our achievement pedestal. You belong there.
May you have joy and a world at peace.
Chris