Tylenol made it worse for my neuropathy. I have taken Tylenol all my life. I thought my legs burned before but Tylenol set it off. I have some CBD HEMP CREAM but it doesn’t work either.
Hi Pamelaz.......did you know that the trade name for Nortriptilene is Pamelor? Just an occurrence that I noticed.
Unfortunately the total Hemp cream with only CBD.....has not been helpful for me either. That is why I use Papa and Barkley, 3:1 CBD/THC for chronic pain and 1:3 CBD/THC for acute pain. If, by chance, I forget it at night, my hands will keep me awake.
Good luck to you.......glad you have so many folks responding to your posts. It always helps to hear from those who have tried the same treatments and medications. We are all different as you can see.
Stay in touch, I would love to hear more of your discoveries.
Yes, of course, I went to the doctors and specialists. I was surprised Mayo Clinic would suggest trying ALA and even more suprised that is actually worked. This is a quote from the Mayo website under alternative treatments: "Alpha-lipoic acid. This has been used as a treatment for peripheral neuropathy in Europe for years. Discuss using alpha-lipoic acid with your doctor because it can affect blood sugar levels. Other side effects can include stomach upset and skin rash." I personally never had any side effects at all, and it has been nothing but helpful for several years now. I noticed a difference after a few days and it just got better with time.
I’ll do research, but I’m wondering if you know off the top of your head how ALA might affect blood sugar levels? I’m assuming that the warning is more for those having issues with high blood sugar; but I have low blood sugar and have to watch as well. Thanks for anything you might know offhand!
I’ll do research, but I’m wondering if you know off the top of your head how ALA might affect blood sugar levels? I’m assuming that the warning is more for those having issues with high blood sugar; but I have low blood sugar and have to watch as well. Thanks for anything you might know offhand!
Hi Debbie, Here's some information on the topic...
"Alpha-lipoic acid can lower blood sugar levels, so people with diabetes or low blood sugar should take alpha-lipoic acid only under the supervision of their health care provider. Animal studies suggest that people who don't get enough thiamine (vitamin B1) should not take alpha-lipoic acid." --- Alpha-lipoic acid: https://www.mountsinai.org/health-library/supplement/alpha-lipoic-acid
Hi Debbie, Here's some information on the topic...
"Alpha-lipoic acid can lower blood sugar levels, so people with diabetes or low blood sugar should take alpha-lipoic acid only under the supervision of their health care provider. Animal studies suggest that people who don't get enough thiamine (vitamin B1) should not take alpha-lipoic acid." --- Alpha-lipoic acid: https://www.mountsinai.org/health-library/supplement/alpha-lipoic-acid
I’ll do research, but I’m wondering if you know off the top of your head how ALA might affect blood sugar levels? I’m assuming that the warning is more for those having issues with high blood sugar; but I have low blood sugar and have to watch as well. Thanks for anything you might know offhand!
I am a senior who has been hypoglycemic (low blood sugar) since I was about 18. I can't eat anything sweet without eating a regular meal first or go too long between meals. ALA hasn't bothered me at all, but I take it in the morning with breakfast. I also take a super B vitamin everyday at the same time so I get the thiamine also mentioned by another as well as B-12. ALA doesn't cost much, but as with all supplements, go for a good brand that is independently lab tested, otherwise you may not be getting what you think you are. I use NOW brand or Natural Grocers store brand and they work for me. Anyhow, it's worth a try if your feet are stinging the heck out of you. For me, that stinging pain is unbearable and my doctors were clueless about anything but prescription meds that may or may not work and can have a lot of side effects I didn't want. The pain doctor said I could get a nerve block, but that has its own problems too. So I am glad I found a way out for now that is simple and effective.
I am a senior who has been hypoglycemic (low blood sugar) since I was about 18. I can't eat anything sweet without eating a regular meal first or go too long between meals. ALA hasn't bothered me at all, but I take it in the morning with breakfast. I also take a super B vitamin everyday at the same time so I get the thiamine also mentioned by another as well as B-12. ALA doesn't cost much, but as with all supplements, go for a good brand that is independently lab tested, otherwise you may not be getting what you think you are. I use NOW brand or Natural Grocers store brand and they work for me. Anyhow, it's worth a try if your feet are stinging the heck out of you. For me, that stinging pain is unbearable and my doctors were clueless about anything but prescription meds that may or may not work and can have a lot of side effects I didn't want. The pain doctor said I could get a nerve block, but that has its own problems too. So I am glad I found a way out for now that is simple and effective.
Thanks so much! I had a near zero hypoglycemic incident a few years ago; came as a surprise, I remember trying to park my car then waking up hours later in a hospital. So I’m still learning about the signs of low blood sugar; I think I’m catching on, and I test when I feel odd. The meals make a lot of sense, as going without gives me an odd feeling that I’ve learned a cookie or Twinkie doesn’t help. I just bought ALA, and am ready to try, so I am so glad for your advice from experience. Thanks again!
I have non-length dependent small fiber sensory neuropathy, which means it is from the top of my head to the soles of my feet. Sometimes i’ll have neuropathy that is in my mouth and its almost impossible to eat or brush my teeth. Because of that I have gotten yeast infections ( thrush) in my mouth. It’s hard for me to walk or put pressure on my feet in the mornings and at night.
I also have Automatic Neuropathy. It attacks nerves that you do not control. Like pupil dilation or constriction, your heart……. My top part of my heart is almost dead. I had a pacemaker put in about seven years ago and at that time they gave me five years to live. It is getting to the point where my electrical system in my heart works sporadically. It has gotten so bad there is no longer any treatment for me and I am on hospice. I have been given less than six months to live. This disease has attacked my vision, my heart, bladder and kidneys. I can hardly pee anymore and will soon have
To put a catheter in every 4 hours to pee. Once
you start using the catheter you can’t go back and I will also have to wear depends for leakage. I have been dealing with neuropathy for 15 years now. I fall, I pass out I’m on oxygen full time.
I do not have gerd but I have terrible acid reflex. About five years ago I had some seizures.
My friends who are dying of cancer feel bad for me because they have very little pain and I am always in horrible pain. This disease has to be one of the worst diseases to have. I also get autonomic storms. This is where your electrical system goes haywire and you sweat profusely you get unimaginable pain. You vomit profusely and I usually make 30 trips to the emergency room a year. I haven’t had one since being placed on clonazepam and Valium.
What terrible is my son has it and in some respects his is worse because of none stop seizures. It’s affected the electrical pathways in his brain. He is 37 and was told he will not make it to 40. He also deals with tons of blood clots and they don’t understand why this is happening. He smokes pot non stop to control his seizures. He use to love getting buzzed but now that he has to use marijuana constantly he hate it.
Does this answer your question
Yes, of course, I went to the doctors and specialists. I was surprised Mayo Clinic would suggest trying ALA and even more suprised that is actually worked. This is a quote from the Mayo website under alternative treatments: "Alpha-lipoic acid. This has been used as a treatment for peripheral neuropathy in Europe for years. Discuss using alpha-lipoic acid with your doctor because it can affect blood sugar levels. Other side effects can include stomach upset and skin rash." I personally never had any side effects at all, and it has been nothing but helpful for several years now. I noticed a difference after a few days and it just got better with time.
I have non-length dependent small fiber sensory neuropathy, which means it is from the top of my head to the soles of my feet. Sometimes i’ll have neuropathy that is in my mouth and its almost impossible to eat or brush my teeth. Because of that I have gotten yeast infections ( thrush) in my mouth. It’s hard for me to walk or put pressure on my feet in the mornings and at night.
I also have Automatic Neuropathy. It attacks nerves that you do not control. Like pupil dilation or constriction, your heart……. My top part of my heart is almost dead. I had a pacemaker put in about seven years ago and at that time they gave me five years to live. It is getting to the point where my electrical system in my heart works sporadically. It has gotten so bad there is no longer any treatment for me and I am on hospice. I have been given less than six months to live. This disease has attacked my vision, my heart, bladder and kidneys. I can hardly pee anymore and will soon have
To put a catheter in every 4 hours to pee. Once
you start using the catheter you can’t go back and I will also have to wear depends for leakage. I have been dealing with neuropathy for 15 years now. I fall, I pass out I’m on oxygen full time.
I do not have gerd but I have terrible acid reflex. About five years ago I had some seizures.
My friends who are dying of cancer feel bad for me because they have very little pain and I am always in horrible pain. This disease has to be one of the worst diseases to have. I also get autonomic storms. This is where your electrical system goes haywire and you sweat profusely you get unimaginable pain. You vomit profusely and I usually make 30 trips to the emergency room a year. I haven’t had one since being placed on clonazepam and Valium.
What terrible is my son has it and in some respects his is worse because of none stop seizures. It’s affected the electrical pathways in his brain. He is 37 and was told he will not make it to 40. He also deals with tons of blood clots and they don’t understand why this is happening. He smokes pot non stop to control his seizures. He use to love getting buzzed but now that he has to use marijuana constantly he hate it.
Does this answer your question
I'm so sorry for all you are going through and the emotional pain of knowing that your young adult son also has this condition.
My understanding is that small fiber neuropathy is a rare condition. Is your condition rare? Have you or your son had genetic testing?
I'm so sorry again. I'll pray for you both.
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I rewrite my note to you tomorrow. But I don’t have gerd but I have bad acid reflux.
Hi Pamelaz.......did you know that the trade name for Nortriptilene is Pamelor? Just an occurrence that I noticed.
Unfortunately the total Hemp cream with only CBD.....has not been helpful for me either. That is why I use Papa and Barkley, 3:1 CBD/THC for chronic pain and 1:3 CBD/THC for acute pain. If, by chance, I forget it at night, my hands will keep me awake.
Good luck to you.......glad you have so many folks responding to your posts. It always helps to hear from those who have tried the same treatments and medications. We are all different as you can see.
Stay in touch, I would love to hear more of your discoveries.
Chris
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1 ReactionI’ll do research, but I’m wondering if you know off the top of your head how ALA might affect blood sugar levels? I’m assuming that the warning is more for those having issues with high blood sugar; but I have low blood sugar and have to watch as well. Thanks for anything you might know offhand!
Hi Debbie, Here's some information on the topic...
"Alpha-lipoic acid can lower blood sugar levels, so people with diabetes or low blood sugar should take alpha-lipoic acid only under the supervision of their health care provider. Animal studies suggest that people who don't get enough thiamine (vitamin B1) should not take alpha-lipoic acid." --- Alpha-lipoic acid: https://www.mountsinai.org/health-library/supplement/alpha-lipoic-acid
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4 ReactionsWow John - I would have thought the opposite! Thank you so much for the link!
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1 ReactionI am a senior who has been hypoglycemic (low blood sugar) since I was about 18. I can't eat anything sweet without eating a regular meal first or go too long between meals. ALA hasn't bothered me at all, but I take it in the morning with breakfast. I also take a super B vitamin everyday at the same time so I get the thiamine also mentioned by another as well as B-12. ALA doesn't cost much, but as with all supplements, go for a good brand that is independently lab tested, otherwise you may not be getting what you think you are. I use NOW brand or Natural Grocers store brand and they work for me. Anyhow, it's worth a try if your feet are stinging the heck out of you. For me, that stinging pain is unbearable and my doctors were clueless about anything but prescription meds that may or may not work and can have a lot of side effects I didn't want. The pain doctor said I could get a nerve block, but that has its own problems too. So I am glad I found a way out for now that is simple and effective.
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Helpful -
Hug
1 ReactionThanks so much! I had a near zero hypoglycemic incident a few years ago; came as a surprise, I remember trying to park my car then waking up hours later in a hospital. So I’m still learning about the signs of low blood sugar; I think I’m catching on, and I test when I feel odd. The meals make a lot of sense, as going without gives me an odd feeling that I’ve learned a cookie or Twinkie doesn’t help. I just bought ALA, and am ready to try, so I am so glad for your advice from experience. Thanks again!
-
Like -
Helpful -
Hug
2 ReactionsI have non-length dependent small fiber sensory neuropathy, which means it is from the top of my head to the soles of my feet. Sometimes i’ll have neuropathy that is in my mouth and its almost impossible to eat or brush my teeth. Because of that I have gotten yeast infections ( thrush) in my mouth. It’s hard for me to walk or put pressure on my feet in the mornings and at night.
I also have Automatic Neuropathy. It attacks nerves that you do not control. Like pupil dilation or constriction, your heart……. My top part of my heart is almost dead. I had a pacemaker put in about seven years ago and at that time they gave me five years to live. It is getting to the point where my electrical system in my heart works sporadically. It has gotten so bad there is no longer any treatment for me and I am on hospice. I have been given less than six months to live. This disease has attacked my vision, my heart, bladder and kidneys. I can hardly pee anymore and will soon have
To put a catheter in every 4 hours to pee. Once
you start using the catheter you can’t go back and I will also have to wear depends for leakage. I have been dealing with neuropathy for 15 years now. I fall, I pass out I’m on oxygen full time.
I do not have gerd but I have terrible acid reflex. About five years ago I had some seizures.
My friends who are dying of cancer feel bad for me because they have very little pain and I am always in horrible pain. This disease has to be one of the worst diseases to have. I also get autonomic storms. This is where your electrical system goes haywire and you sweat profusely you get unimaginable pain. You vomit profusely and I usually make 30 trips to the emergency room a year. I haven’t had one since being placed on clonazepam and Valium.
What terrible is my son has it and in some respects his is worse because of none stop seizures. It’s affected the electrical pathways in his brain. He is 37 and was told he will not make it to 40. He also deals with tons of blood clots and they don’t understand why this is happening. He smokes pot non stop to control his seizures. He use to love getting buzzed but now that he has to use marijuana constantly he hate it.
Does this answer your question
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2 ReactionsWhat ALA brand and dosage do you use?
I'm so sorry for all you are going through and the emotional pain of knowing that your young adult son also has this condition.
My understanding is that small fiber neuropathy is a rare condition. Is your condition rare? Have you or your son had genetic testing?
I'm so sorry again. I'll pray for you both.
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1 Reaction