Help in dealing with neuropathy

Junior_Jones · Apr 1, 2015

Despite having excellent control, it seems I've developed neuropathy. There is currently a shortage of Neurologists in the NHS so I have been waiting to see one since November and when I went for the appointment, the consultant was absent from work (no reason given) but I have an alternative date. I am finding the sensations I am getting unbearable as they are so intense it's hard to function. I have developed clinical depression with it all. Is there any hope of some relief?

Spiker · Apr 1, 2015

The neurologist will almost certainly prescribe pain relief drugs so you could go to your GP and explain the situation and get him or her to prescribe neuropathy pain relief meds in the interim.

Omnipod · Apr 1, 2015

I just been through this and have done tons of research.
Neuropathy starts when your BS post prandial goes higher than 7.7.
My neuropathy was so bad that I could not wear shoes and I could not sleep. The dr's put me on Amytriptiline but then I could not wake up in the mornings. It left me too drowsy that I could not function 100%

I went back to the dr who sent me to a neurologist and podiatrist. They then prescribed Gabapentin. I went to collect the pills and when I got home, i started reading the leaflet. There was no way I would take take these pills. I googled them and read many reviews. I did not want to feel like my brain is numb, halucinate or appear slow.

I then was advised to read 'The antioxidant Miracle' by Lester Packer. I bought the kindle version and started reading. I read the book cover to cover in a single day and was so inspired by the stories and research that I was reading.
I went to Holland and Barret and bought Alpha Lipoic Acid and Vitamin B12, Vitamin C, D and E. Tripple Omega and Co Enzyme Q10.

I started low carbing and keeping my bloods as low as possible. I did everything to avoid a post prandial spike. Within 1 week, my neuropathy pain was gone.

I now find that if I have a bout of high blood sugar, even if it goes up to 12 after a meal, the tingling and burning comes back. The other day I had a blood sugar or 26 and the pain returned even worse.

The ONLY way to treat neuropathy is to keep you BS under 7.7 and to take alpha lipoic and vitamin B12.

In Germany all diabetic patients with neuropathy are prescribed alpha lipoic and Vit B12.

I have also been reading stories about men in particular with neuropathy. Most of them have a degree of erectile dysfunction. Some of these men started taking viagra / cialis which improved the flow of blood into the microvascular veins which inturn also seemed to improve neuropathy.

Neuropathy is a serious condition and will only get worse if you just take stuff like gabapentin and do not deal with the cause. You really have to stay below 7.7 at all times.

Hope that helps.

hanham97 · Apr 1, 2015

My senior doctor has put me on Amitriptyline. It works on Neuropathy. Taken at night.

Brunneria · Apr 1, 2015

Omnipod said:
I just been through this and have done tons of research.
Neuropathy starts when your BS post prandial goes higher than 7.7.
My neuropathy was so bad that I could not wear shoes and I could not sleep. The dr's put me on Amytriptiline but then I could not wake up in the mornings. It left me too drowsy that I could not function 100%

I went back to the dr who sent me to a neurologist and podiatrist. They then prescribed Gabapentin. I went to collect the pills and when I got home, i started reading the leaflet. There was no way I would take take these pills. I googled them and read many reviews. I did not want to feel like my brain is numb, halucinate or appear slow.

I then was advised to read 'The antioxidant Miracle' by Lester Packer. I bought the kindle version and started reading. I read the book cover to cover in a single day and was so inspired by the stories and research that I was reading.
I went to Holland and Barret and bought Alpha Lipoic Acid and Vitamin B12, Vitamin C, D and E. Tripple Omega and Co Enzyme Q10.

I started low carbing and keeping my bloods as low as possible. I did everything to avoid a post prandial spike. Within 1 week, my neuropathy pain was gone.

I now find that if I have a bout of high blood sugar, even if it goes up to 12 after a meal, the tingling and burning comes back. The other day I had a blood sugar or 26 and the pain returned even worse.

The ONLY way to treat neuropathy is to keep you BS under 7.7 and to take alpha lipoic and vitamin B12.

In Germany all diabetic patients with neuropathy are prescribed alpha lipoic and Vit B12.

I have also been reading stories about men in particular with neuropathy. Most of them have a degree of erectile dysfunction. Some of these men started taking viagra / cialis which improved the flow of blood into the microvascular veins which inturn also seemed to improve neuropathy.

Neuropathy is a serious condition and will only get worse if you just take stuff like gabapentin and do not deal with the cause. You really have to stay below 7.7 at all times.

Hope that helps.

I REALLY like this post.

I fight the onset of neuropathy every day, by keeping my blood glucose as low as poss at all times - because I've had the odd stabbing pain in the soles of my feet - always after higher BG levels. And that means that there is damage already present, even if I'm not normally aware of it.

My personal goals are near normal BG - and that means tight dietary control. I aim to never let my BG rise above 7 mmol/l, but don't always get there.

I find Bernstein's Diabetes Solution very inspiring.

gemma6549 · Apr 1, 2015

Amitriptyline and gabapentin didn't do the job for me, but the combination of duloxetine and pregabalin was amazing.

I found that the neuropathy was particularly bad should my sugars go above 8, so I did my best to always keep them below that level.

Referrals can take a long time, particularly to find the person with the right knowledge, but please don't worry you will, once seen by the right person, get some relief.

Omnipod · Apr 1, 2015

and I firmly believe that most of this damage caused by diabetes can be reversed. The body produces new cells all the time so I have no doubt that damage can be reversed.

Junior_Jones · Apr 2, 2015

I am seeing the neurologist this afternoon. Some tests have been done and not all the results are back though. It's been a tough few months as my presentations with neuropathy is atypical and other avenues such a medication side effects were thought to be the main problem.

I have prepared a list of things things to be discussed.

gemma6549 said:
Amitriptyline and gabapentin didn't do the job for me, but the combination of duloxetine and pregabalin was amazing.

I found that the neuropathy was particularly bad should my sugars go above 8, so I did my best to always keep them below that level.

Referrals can take a long time, particularly to find the person with the right knowledge, but please don't worry you will, once seen by the right person, get some relief.

Junior_Jones · Apr 2, 2015

Thanks every one for your input. I will consider the pros and cons of your suggestions but the main thing is that you have given me some hope as there are a range of options and some success stories.

The neurologist gave me some suggestions and some options of treatment. He was a very pragmatic and humane doctor as opposed to the ones who like giving you likelihoods etc. and being very clinical. It was his understanding of how my mood s being affected by the intensity of tingling pain I experience which didn't make me think bad about being depressed.

My control as I said is good with my Hb1As running consistently between 4.5 and 4.8. I am on metformin which dramatically improved the sugar levels alongside with exercise. I do at least an hours walking a day and having a dog who is a good walker does help. I am pretty good with my diet as I had high bad cholesterol and high triglycerides. The exercise regime also dramatically improved these too and with the medication I am on,.

Interestingly, metformin can cause malabsorbsion of vitamins and my GP checked my B12 levels and folate which were low but normal despite taking supplements. I am also on PPIs for GORD caused by a hiatus hernia and the reduction in stomach acid also causes problems with B12 absorbsion. I am not prepared for the surgery which is extremely painful, dangerous as the chest wall is invaded and cause nerve damage and only controls the reflux for a very short period of time.

I am on Omicor for the lipid problem too. This is a very high potency Omega 3 medication and is highly regarded by my consultant. The NHS though has recently stopped this as a routine treatment for certain conditions but my GP has kept me on it to keep the cholesterol at bay. I am interested in exploring the options re the other supplements.

Part of the treatment for neuropathy is tight control and my docs are saying that my control is outstanding for type 2. Despite good blood sugars between 6-8 my symptons have not gone away. I have discussed this with the docs and they say that neuropathy can occur even with good control. Vit B12 deficiency also causes nerve pain but I have never been anaemic with good HB levels so it's unlikely that I had folate defficient anaemia.

jack412 · Apr 2, 2015

I put house bricks under the head of the bed, so it's on a 4 inch slope down to the foot..... together with LCHF diet fixed a lot of things for me

it’s a long page and a few good video’s
http://www.dietdoctor.com/lchf

Brunneria · Apr 2, 2015

Looks like you have got your head around it nicely.

The only thing I want to add is that 'good control' according to NHS thinking is not necessarily good enough to prevent the development of neuropathy.

My idea of 'good control' is drawn from Jenny Rhul's evidence on the www.bloodsugar101.com website, and Bernstein's thinking. Bernstein has been a T1 for 60+ years, I think. And by his 40s he had a whole range of D complications. Since then his dietary and BG control have led to the reversal/improvement of nearly all of the complications.

Wishing you all the best in this battle - because it is one we all share.

gemma6549 · Apr 2, 2015

When my neuropathy was bad i started taking Thiamine, this is a very high dose of Vitamin B12 and this really made a difference.

Even though my bloods showed my B12 levels to be fine, it still made a significant difference to the pain.

I maintained good control and the neuropathy resolved itself after 12 months. Sometimes the body just needs time to repair itself.

Clivethedrive · Apr 2, 2015

Omnipod said:
I just been through this and have done tons of research.
Neuropathy starts when your BS post prandial goes higher than 7.7.
My neuropathy was so bad that I could not wear shoes and I could not sleep. The dr's put me on Amytriptiline but then I could not wake up in the mornings. It left me too drowsy that I could not function 100%

I went back to the dr who sent me to a neurologist and podiatrist. They then prescribed Gabapentin. I went to collect the pills and when I got home, i started reading the leaflet. There was no way I would take take these pills. I googled them and read many reviews. I did not want to feel like my brain is numb, halucinate or appear slow.

I then was advised to read 'The antioxidant Miracle' by Lester Packer. I bought the kindle version and started reading. I read the book cover to cover in a single day and was so inspired by the stories and research that I was reading.
I went to Holland and Barret and bought Alpha Lipoic Acid and Vitamin B12, Vitamin C, D and E. Tripple Omega and Co Enzyme Q10.

I started low carbing and keeping my bloods as low as possible. I did everything to avoid a post prandial spike. Within 1 week, my neuropathy pain was gone.

I now find that if I have a bout of high blood sugar, even if it goes up to 12 after a meal, the tingling and burning comes back. The other day I had a blood sugar or 26 and the pain returned even worse.

The ONLY way to treat neuropathy is to keep you BS under 7.7 and to take alpha lipoic and vitamin B12.

In Germany all diabetic patients with neuropathy are prescribed alpha lipoic and Vit B12.

I have also been reading stories about men in particular with neuropathy. Most of them have a degree of erectile dysfunction. Some of these men started taking viagra / cialis which improved the flow of blood into the microvascular veins which inturn also seemed to improve neuropathy.

Neuropathy is a serious condition and will only get worse if you just take stuff like gabapentin and do not deal with the cause. You really have to stay below 7.7 at all times.

Hope that helps.

The great dr r bernstein recommends bs 4.4 to 5.5 max , for every .1 over there will be neuropathy consequences.

mikej3252 · Apr 3, 2015

Junior_Jones said:
Despite having excellent control, it seems I've developed neuropathy. There is currently a shortage of Neurologists in the NHS so I have been waiting to see one since November and when I went for the appointment, the consultant was absent from work (no reason given) but I have an alternative date. I am finding the sensations I am getting unbearable as they are so intense it's hard to function. I have developed clinical depression with it all. Is there any hope of some relief?

Have a word with your GP. Mine gave me some amitriptiline. This is actually an anti depressant, but it works on my neuropathy.

hanham97 · Apr 3, 2015

I.m on it too but still in pain.

LucySW · Apr 4, 2015

Junior_Jones said:
Thanks every one for your input. I will consider the pros and cons of your suggestions but the main thing is that you have given me some hope as there are a range of options and some success stories.

The neurologist gave me some suggestions and some options of treatment. He was a very pragmatic and humane doctor as opposed to the ones who like giving you likelihoods etc. and being very clinical. It was his understanding of how my mood s being affected by the intensity of tingling pain I experience which didn't make me think bad about being depressed.

My control as I said is good with my Hb1As running consistently between 4.5 and 4.8. I am on metformin which dramatically improved the sugar levels alongside with exercise. I do at least an hours walking a day and having a dog who is a good walker does help. I am pretty good with my diet as I had high bad cholesterol and high triglycerides. The exercise regime also dramatically improved these too and with the medication I am on,.

Interestingly, metformin can cause malabsorbsion of vitamins and my GP checked my B12 levels and folate which were low but normal despite taking supplements. I am also on PPIs for GORD caused by a hiatus hernia and the reduction in stomach acid also causes problems with B12 absorbsion. I am not prepared for the surgery which is extremely painful, dangerous as the chest wall is invaded and cause nerve damage and only controls the reflux for a very short period of time.

I am on Omicor for the lipid problem too. This is a very high potency Omega 3 medication and is highly regarded by my consultant. The NHS though has recently stopped this as a routine treatment for certain conditions but my GP has kept me on it to keep the cholesterol at bay. I am interested in exploring the options re the other supplements.

Part of the treatment for neuropathy is tight control and my docs are saying that my control is outstanding for type 2. Despite good blood sugars between 6-8 my symptons have not gone away. I have discussed this with the docs and they say that neuropathy can occur even with good control. Vit B12 deficiency also causes nerve pain but I have never been anaemic with good HB levels so it's unlikely that I had folate defficient anaemia.

Dear Junior Jones,

This sounds so tough. We all feel with you. It shouldn't be this way. But don't give up - and maybe try out some of Omnipod's responses. All the very best with it.

Lucy

Emmotha · Apr 4, 2015

Omnipod said:
I just been through this and have done tons of research.
Neuropathy starts when your BS post prandial goes higher than 7.7.
My neuropathy was so bad that I could not wear shoes and I could not sleep. The dr's put me on Amytriptiline but then I could not wake up in the mornings. It left me too drowsy that I could not function 100%

I went back to the dr who sent me to a neurologist and podiatrist. They then prescribed Gabapentin. I went to collect the pills and when I got home, i started reading the leaflet. There was no way I would take take these pills. I googled them and read many reviews. I did not want to feel like my brain is numb, halucinate or appear slow.

I then was advised to read 'The antioxidant Miracle' by Lester Packer. I bought the kindle version and started reading. I read the book cover to cover in a single day and was so inspired by the stories and research that I was reading.
I went to Holland and Barret and bought Alpha Lipoic Acid and Vitamin B12, Vitamin C, D and E. Tripple Omega and Co Enzyme Q10.

I started low carbing and keeping my bloods as low as possible. I did everything to avoid a post prandial spike. Within 1 week, my neuropathy pain was gone.

I now find that if I have a bout of high blood sugar, even if it goes up to 12 after a meal, the tingling and burning comes back. The other day I had a blood sugar or 26 and the pain returned even worse.

The ONLY way to treat neuropathy is to keep you BS under 7.7 and to take alpha lipoic and vitamin B12.

In Germany all diabetic patients with neuropathy are prescribed alpha lipoic and Vit B12.

I have also been reading stories about men in particular with neuropathy. Most of them have a degree of erectile dysfunction. Some of these men started taking viagra / cialis which improved the flow of blood into the microvascular veins which inturn also seemed to improve neuropathy.

Neuropathy is a serious condition and will only get worse if you just take stuff like gabapentin and do not deal with the cause. You really have to stay below 7.7 at all times.

Hope that helps.

This is the best and most hopeful reply I have read about neurothapy. Thank you!
My blood has just gone up to 12 and it's here with a vengeance. Time to take it seriously now. And your post gives me hope that it can calm down.

Spiker · Apr 4, 2015

It's Viagra twice daily for me now, whether I need it or not.

Brunneria · Apr 4, 2015

Spiker said:
It's Viagra twice daily for me now, whether I need it or not.

Did I ever tell you that you're my hero?

LucySW · Apr 4, 2015

He must know - all the gush we write about him. I want Spikey. PS I am having a really awful feverish shakey cold in Barcelona so I'm not compos mentis. Your batcave is probably superior tho Brunneria.

Hic shiver

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