Any advice/help appreciated ? Treatment induced neuropathy

[Docb]

@ridder - As I said in my earlier post, I have tried all of them and nothing has worked either alone or in combination. Again, as far as I can see, reactions to the various medications is highly individual so don't raise your hopes over something that worked for somebody else, or put off by those, like me, who have found no relief. Keep trying and I hope you find something that works for you. There are loads to go at if you have a helpful, and interested GP.

Amitriptyline was quite interesting for me. It did nothing for the neuropathy but when I stopped it I had a few weeks of the most amazing psychedelic, technicolour dreams. One of the more interesting side effects of that medication.

Also, my experience of all these medications is that that dosage is built up very slowly until you find a dose that either works for you or the side effects are worse than the neuropathy. Never got much higher than half the recommended maximum dose on any of the standard medications before I had to stop them as they brought me to a grinding halt.

Not tried Alpha Lipoic acid. All my experimentation has been done under the guidance of my GP and that is not on his radar.

 

[Pollyanna]

I take pregabalin but going to talk to my GP about amitriptyline or duloxetine to take alongside it. What doses of each are you taking? Anything to help!

2x10mg amitriptyline taken at night...they a good muscle relaxant.
1x150gm pregabalin in morning and at night. If in pain over and above I can take an extra 1 midday ish; tbh that's rare these days, can cope with legs and feet but when the face gets an attack it drives me up the wall. The attacks in general do build up regardless but then stop more or less until next time.

 

[everydayupsanddowns]

Fingers crossed you find your own personal combination of meds to bring you some relief @ridder

 

[ridder]

Fingers crossed you find your own personal combination of meds to bring you some relief @ridder

Thank you.
I've taken my first 300mg R-Alpha Lipoic Acid this morning so guess it's just wait and see with this! Seeing a GP next week to discuss adding amitriptyline or duloxetine to pregabalin so

 

[ridder]

2x10mg amitriptyline taken at night...they a good muscle relaxant.
1x150gm pregabalin in morning and at night. If in pain over and above I can take an extra 1 midday ish; tbh that's rare these days, can cope with legs and feet but when the face gets an attack it drives me up the wall. The attacks in general do build up regardless but then stop more or less until next time.

Can I just ask what your symptoms were before taking the combination of pregabalin and amitriptyline? TIA

 

[Pollyanna]

I'd been having painful stinging sensations in my feet and calves and on my face. Then it worsened to nerve type pain...I'd been suffering a bad back on and off after a RTA years ago so I knew what nerve pain felt like.
I'd had my feet check up and doc said they were fine so I thought ok...maybe coming from my back.
I then broke out in shingles...I thought I had midge bites from working in the garden but when the pain of those hit my OH called for a home visit from GP who took one look said shingles too late for anti virals... prescription for pregabalin.
The symptoms were all mixed up by that time. Had pain from the shingles rash had stinging and prickles in legs, feet and face.
All stopped after pregabalin
Stopped the preg when shingles went, two weeks later ...stinging tingling, numbness, pain in face feet calves.
Went to GP who immediately said neuropathy and put me back on preg.
It's very difficult to explain to be honest...it starts with pin prick feeling then to an exploding stinging, itching, cramping, sciatica type pain or tooth ache in legs and feet.
It also comes and goes ...builds up then dies down then next time it's a different nerve path.
Hope that helps....sorry it long winded.

 

[ridder]

I'd been having painful stinging sensations in my feet and calves and on my face. Then it worsened to nerve type pain...I'd been suffering a bad back on and off after a RTA years ago so I knew what nerve pain felt like.
I'd had my feet check up and doc said they were fine so I thought ok...maybe coming from my back.
I then broke out in shingles...I thought I had midge bites from working in the garden but when the pain of those hit my OH called for a home visit from GP who took one look said shingles too late for anti virals... prescription for pregabalin.
The symptoms were all mixed up by that time. Had pain from the shingles rash had stinging and prickles in legs, feet and face.
All stopped after pregabalin
Stopped the preg when shingles went, two weeks later ...stinging tingling, numbness, pain in face feet calves.
Went to GP who immediately said neuropathy and put me back on preg.
It's very difficult to explain to be honest...it starts with pin prick feeling then to an exploding stinging, itching, cramping, sciatica type pain or tooth ache in legs and feet.
It also comes and goes ...builds up then dies down then next time it's a different nerve path.
Hope that helps....sorry it long winded.

So, you really are going through it. Hope you find some relief. I'm only taking pregabalin 300mg a day and now alpha lipoic acid, although unsure what dosages I should be taking? Got docs on Thursday to see if I can add duloxetine to help with numbness mainly.

 

[ridder]

Just back from Docs.. Why have no GPs I have seen ever heard of treatment induced diabetic neuropathy (TIND)!!

 

[rebrascora]

Because GPs are General Practitioners not specialists.

It sounds like your appointment was frustrating and I can understand that and sympathise but GPs know very little about diabetes let alone the complications of it. If they don't know and can't help you then they should be referring you to someone who does though.

 

[Pollyanna]

Im lucky ...my GP is brilliant, we get alloted GPs based on conditions and my GP does one day a week on duty at our university hospital diabetes clinic.
My friend's GP is useless ...he doesn't think that type 2 can become type 1...he told her if she was type 1 she would have been so from childhood.

 

[rebrascora]

he doesn't think that type 2 can become type 1

Type 2 cannot become Type 1 so he is right in that respect. But Type 1 can develop later in life and often be misdiagnosed as Type 2.

 

[ridder]

Because GPs are General Practitioners not specialists.

It sounds like your appointment was frustrating and I can understand that and sympathise but GPs know very little about diabetes let alone the complications of it. If they don't know and can't help you then they should be referring you to someone who does though.

Thank u. My thoughts exactly, The whole appt was frustrating and very deflating. Felt really low last night as not getting any support or help. I saw a different doc (only one I could get to see!) She did agree to start me on duloxetine tho so guess that was a win!! I asked to be referred to an endocrinologist but was told it wouldn't be worth it as my bg's were in a good place!!(When this first started) I am tho seeing a DSN and neurologist in a few weeks so I guess that's something!

 

[ridder]

Thank u. My thoughts exactly, The whole appt was frustrating and very deflating. Felt really low last night as not getting any support or help. I saw a different doc (only one I could get to see!) She did agree to start me on duloxetine tho so guess that was a win!! I asked to be referred to an endocrinologist but was told it wouldn't be worth it as my bg's were in a good place!!(When this first started) I am tho seeing a DSN and neurologist in a few weeks so I guess that's something!

Has anyone taken both pregabalin and duloxetine (cymbalta) for neuropathic pain? Just wondering if it was successful? I'm just starting the combination so ...