It's all about balance

[Docb]

As many of you will know I have some sort of slow burn neuropathy going on in my face. Over the years it has got steadily more intense.

The neurologists cannot pin it down to being a result of one of the few things they can diagnose (apologies for the cynicism) but my GP is at least been seeing me and is happy to experiment with both licenced and off licence medications to try and get me some relief. The difficulty with these meds is that they all have side effects, the most common being what I will call brain fog. The brain fog manifests itself as a general slowing down, forgetfulness, inability to think as quickly and as straight as you used to and physical things like lack of balance.

I have experimented before with various drugs for neuropathic pain with no clear outcomes but the neuropathy had got to a point a year ago that with the GPs help I started down the medication route again. Tried the standard stuff (gabapentin) building the dose very slowly until the side effects were intolerable and then cut that back and added in some other things. A couple of weeks ago I got to the point where I had no real idea of what was neuropathy and what were side effects. I then took the executive decision to stop the medications. I did it simply to get a new baseline and when I reported to the GP he was quite happy with what I had done. I could also report to him that the underlying neuropathy was much worse than a year ago having spread into the lower part of my face and I felt was beginning to affect my speech.

My conclusion was that the various medications were having some effect but only dampening things down rather eliminating the symptoms. As I increased the dose then that improvement was negated by their side effects.

The upshot is that I am going to start again with the gabapentin but armed with this years experiences, I will be trying to find a balance and take a bit of relief from the neuropathy rather trying to push things to the point where the major neuropathic relief is off set by the debilitating side effects of the medication. We will see what happens.

I relate this anecdote because we get quite a lot of discussion on the forum where things are said to be either "good" or "bad". Just about everything has up sides and down sides, you just have to find a balance.

On a brighter note...got some bloods back yesterday. Hba1c of 47 - I predicted 48+/- 2 and everything else normal. See the DSN for annual review early Jan. Our surgery is really well organised!

 

[Vonny]

Great news on bloods @Docb. I hope balancing the gabapentin will bring some relief - neuropathy must be awful.

 

[trophywench]

CBD oil doesn't work for every one and every thing its perfectly true but I believe can be very successful relieving pain. Not a thing I spend much time thinking about normally - but we watched Clive Myrie in Jamaica last night.

 

[JITR]

@Docb
Encouraging Hba1c at 47? As I recall your answer to my question some time ago, you were happy to maintain 55. Might a further reduction help gabapentin alleviate your neuropathy? Just a thought.

 

[Leadinglights]

As many of you will know I have some sort of slow burn neuropathy going on in my face. Over the years it has got steadily more intense.

The neurologists cannot pin it down to being a result of one of the few things they can diagnose (apologies for the cynicism) but my GP is at least been seeing me and is happy to experiment with both licenced and off licence medications to try and get me some relief. The difficulty with these meds is that they all have side effects, the most common being what I will call brain fog. The brain fog manifests itself as a general slowing down, forgetfulness, inability to think as quickly and as straight as you used to and physical things like lack of balance.

I have experimented before with various drugs for neuropathic pain with no clear outcomes but the neuropathy had got to a point a year ago that with the GPs help I started down the medication route again. Tried the standard stuff (gabapentin) building the dose very slowly until the side effects were intolerable and then cut that back and added in some other things. A couple of weeks ago I got to the point where I had no real idea of what was neuropathy and what were side effects. I then took the executive decision to stop the medications. I did it simply to get a new baseline and when I reported to the GP he was quite happy with what I had done. I could also report to him that the underlying neuropathy was much worse than a year ago having spread into the lower part of my face and I felt was beginning to affect my speech.

My conclusion was that the various medications were having some effect but only dampening things down rather eliminating the symptoms. As I increased the dose then that improvement was negated by their side effects.

The upshot is that I am going to start again with the gabapentin but armed with this years experiences, I will be trying to find a balance and take a bit of relief from the neuropathy rather trying to push things to the point where the major neuropathic relief is off set by the debilitating side effects of the medication. We will see what happens.

I relate this anecdote because we get quite a lot of discussion on the forum where things are said to be either "good" or "bad". Just about everything has up sides and down sides, you just have to find a balance.

On a brighter note...got some bloods back yesterday. Hba1c of 47 - I predicted 48+/- 2 and everything else normal. See the DSN for annual review early Jan. Our surgery is really well organised!

There is something called Ramsay Hunt Syndrome which is a complication of the shingles virus and the symptoms sound quite similar to what you describe. Apparently it is quite rare.

 

[Martin.A]

Well done on your HbA1c result but sorry to hear about your neuropathy issues. Hopefully your 'reboot' will have a positive outcome.

 

[Satan’s little helper]

Sorry to read that @Docb . But well done on the HBA1c. I had no idea you were struggling? Hope you find resolution to your problem soon.

 

[Docb]

Thank you @Satan’s little helper and thank you to all.

The post formulated itself on a walk this morning. Walked into Longridge, did a bit of shopping and caught the bus home. Total walking about 3 miles. On this walk i realised I had not even considered taking it this year although over the last few years I would do it at least once a week. I reasoned that it might be that it was the brain fog which had stopped my walking since through this year I have been experimenting with the neuro medications.

This then left me with the notion that I could maybe get back to walking more but only if I could live with the neuropathy. Which then led me asking the question, where might the balance lie and my ramblings above.

I do not think there will be the resolution I would love to see - freedom from the neuropathy with no brain fog. The only option I have is to experiment until find a balance that suits me.

 

[Satan’s little helper]

Thank you @Satan’s little helper and thank you to all.

The post formulated itself on a walk this morning. Walked into Longridge, did a bit of shopping and caught the bus home. Total walking about 3 miles. On this walk i realised I had not even considered taking it this year although over the last few years I would do it at least once a week. I reasoned that it might be that it was the brain fog which had stopped my walking since through this year I have been experimenting with the neuro medications.

This then left me with the notion that I could maybe get back to walking more but only if I could live with the neuropathy. Which then led me asking the question, where might the balance lie and my ramblings above.

I do not think there will be the resolution I would love to see - freedom from the neuropathy with no brain fog. The only option I have is to experiment until find a balance that suits me.

I’m no expert on these things. My priorities would be the brain fog? (Favour what I have as “me.” But neuropathy if I was subject to it would be hell of a distraction in itself & probably mix my emotions where I am currently in life? But you are not me. I sincerely wish you all the best. You have my respect in what you are doing.

 

[silver minion]

Thank you @Satan’s little helper and thank you to all.

The post formulated itself on a walk this morning. Walked into Longridge, did a bit of shopping and caught the bus home. Total walking about 3 miles. On this walk i realised I had not even considered taking it this year although over the last few years I would do it at least once a week. I reasoned that it might be that it was the brain fog which had stopped my walking since through this year I have been experimenting with the neuro medications.

This then left me with the notion that I could maybe get back to walking more but only if I could live with the neuropathy. Which then led me asking the question, where might the balance lie and my ramblings above.

I do not think there will be the resolution I would love to see - freedom from the neuropathy with no brain fog. The only option I have is to experiment until find a balance that suits me.

Sorry to hear that the facial neuropathy has been so debilitating. As you said taking drugs to relieve symptoms is always a trade off against the side effects and finding a balance that suits you. Glad to hear your hbA1c is coming down. Hope your review in January goes well.

 

[everydayupsanddowns]

Thanks for an interesting and thought-provoking thread @Docb

Congrats on your reduced Hba1c, and hope you find an optimal balance between improvement in symptoms with acceptable levels of side effects.

 

[Docb]

@Leadinglights - all sorts of things have been considered but Ramsay Hunt Syndrome is a new one. A quick google shoves it on the back burner - I don't have the ataxia and trembling which seem to be markers.

If i can expand a little on the annoying thing that is neuropathy. Only one who has it knows what it is like. The medics have nothing they can measure and so simply have to take your word for it. Some trust you, some do not, and some give the impression that you are being a bit of a wimp. If a brain scan does not show massive problems (stroke, tumour, or major brain decay), a lumber puncture and nerve conduction studies do not show anything obvious then they seem to be at a loss and the view they take depends us much on their personalities as their medical expertise.

Another issue is that there is no vocabulary to describe the various sensations that come under the heading of neuropathy. Makes communication very difficult.

I have great empathy with anybody on the forum (and anybody else for that matter) with neuropathy that has no clear and obvious cause. I take a pragmatic approach, working with what is available to make things as best they can be, accepting perfection is never to going to happen.

Finally a point which might amuse.... In my last conversation with a neurologist he suggested that I should rejoice in the fact that they had not found any underlying cause. I guess that's because he thinks that if they had found anything, it would probably be terminal. Me, I thought it odd that I should rejoice in the idea that the understanding of neuropathic systems had only advanced to the point where only very big things could be diagnosed. Hiding ignorance behind bonhomie is not a good way to build confidence methinks.

 

[Proud to be erratic]

I relate this anecdote because we get quite a lot of discussion on the forum where things are said to be either "good" or "bad". Just about everything has up sides and down sides, you just have to find a balance.

I only got to your post, @Docb, this morning. It reminds me that I was going to prolong an observation made by a member (in my age bracket) a couple of months ago - and add further commentary then. The nub of his remark (apologies I can no longer recall who, or his exact vocabulary) was that sometimes he couldn't decide if some effects of aging were screening some effects of diabetes OR vice versa. I immediately empathised with that observation then.

Yesterday, during a face to face Consult with my Endocrinologist, your remarks about "balancing up sides and down sides" bubbled out twice:

​

First, in the context of how I was doing with my own D management (very well, in her view); her limited concern was that I needed to balance the gain (great TIR) against the pain or angst of getting great TIR.​

​

Then in the context of my eligibility for a pump (not so promising, alas). The "balance" here is that managing my BG well, means I'm reducing my eligibility with the regional ICB for extra tech.​

​

Meanwhile the 5 year programme for the roll out of HCL is struggling right now; partly because of funding issues, but mainly for personnel challenges. Staff shortages are real and training those staff for the changing emphasis with increased use of tech is vital. Patients want and need the tech. Expectations are high, thanks to publicity. Managing those expectations is a big challenge and that in itself needs "balance" in how the Department sustains hope within patients for the longer term, but nothing tomorrow. I detected that the financial commitment has its own fragility: the spirit was willing, but with so many conflicting demands for funding programming funds for HCL, when the spend would be actually achievable, had its own challenges.

Now I'm rambling - sorry. But as you so astutely remarked "Just about everything has up sides and down sides, you just have to find a balance".

I also hope, @Docb, you can find that "balance" in coping with your facial neuropathy. Great HbA1c; that doesn't come without your own due diligence. This thread gets deeper with the various responses.

 

[silver minion]

Finally a point which might amuse.... In my last conversation with a neurologist he suggested that I should rejoice in the fact that they had not found any underlying cause. I guess that's because he thinks that if they had found anything, it would probably be terminal. Me, I thought it odd that I should rejoice in the idea that the understanding of neuropathic systems had only advanced to the point where only very big things could be diagnosed. Hiding ignorance behind bonhomie is not a good way to build confidence methinks.

The well worn medical adjective "idiopathic " springs to mind. Or " we don't know what is causing it" in layman's terms. My husband has been told this about his paroxysmal AF following several tests on his heart and cardio vascular system in the last nine years.
As you say, it really doesn't make you feel any better.

 

[silver minion]

Sorry @Docb couldn't get the pasted content from your post to go blue. Hope it doesn't confuse anyone

 

[JITR]

If i can expand a little on the annoying thing that is neuropathy. Only one who has it knows what it is like.

A) The medics have nothing they can measure ....

B) Another issue is that there is no vocabulary to describe the various sensations that come under the heading of neuropathy. Makes communication very difficult ....

C) Neuropathy that has no clear and obvious cause.

Out on my evening walk, I remembered the unpleasant itching in my legs I used to get before my T2 diagnosis. Back home Google AI said there is a link between prediabetes, metabolic syndrome and neuropathy. It came up with the following paper which seems to go some way towards answering points A), B), C) above. The University of Utah Cutaneous Nerve Laboratory provided some fascinating images.

Peripheral neuropathy in prediabetes and the metabolic syndrome - PMC

Peripheral neuropathy is a major cause of disability worldwide. Diabetes is the most common cause of neuropathy, accounting for 50% of cases. Over half of people with diabetes develop neuropathy, and diabetic peripheral neuropathy (DPN) is a major ...

pmc.ncbi.nlm.nih.gov

 

[Docb]

@JITR The paper you have picked out sort of illustrates my point. I have quickly skimmed it, but in order to understand it I would need a couple of days, and a lot of googling to try and get to grips with the terminology. Even then I am not sure if it would help me to communicate the sensory effects of my neuropathy when sitting in front of a medic. I also doubt there is anything in the paper that would lead to method whereby a medic an independently assess sensory disturbance levels independently.

My thoughts are more a comment about where medical science is than how competent the medics are. Alongside my facial neuropathy I have continuous tinnitus, an acquired nystagmus and diabetes. All kicked off at around the same time.

I am confident that if you googled the symptoms you would find somewhere, something that would relate them all together and suggest they have a common cause. I have seen specialists in all the areas and they cannot do that with current understanding of the way the neural systems work. In particular there is no suggestion that the neuropathy and diabetes are related.

On balance (there's that word again) I prefer to work with their assessments rather than something turned up by google. I am sure that sometime in the future, techniques will be devised and developed to independently measure the things we call sensation and pain. I doubt I will be around long enough to see it.

 

[JITR]

@Docb. Yes, I take your point. I thought the links the paper describes between metabolic syndrome and neuropathy were interesting. I need to think about the amount of effort spent on all these fundamental research papers versus that spent on putting the pieces together into practically useful guidance for HCPs amd their patients.

 

[harbottle]

Out on my evening walk, I remembered the unpleasant itching in my legs I used to get before my T2 diagnosis. Back home Google AI said there is a link between prediabetes, metabolic syndrome and neuropathy. It came up with the following paper which seems to go some way towards answering points A), B), C) above. The University of Utah Cutaneous Nerve Laboratory provided some fascinating images.

Peripheral neuropathy in prediabetes and the metabolic syndrome - PMC

Peripheral neuropathy is a major cause of disability worldwide. Diabetes is the most common cause of neuropathy, accounting for 50% of cases. Over half of people with diabetes develop neuropathy, and diabetic peripheral neuropathy (DPN) is a major ...

pmc.ncbi.nlm.nih.gov

That's an interesting paper.
I have had a lot of strange changes in my body since diagnosis and getting it under control - sweating was one. It sort of stopped for a while, but last year started up again.

 

[Nige13]

As many of you will know I have some sort of slow burn neuropathy going on in my face. Over the years it has got steadily more intense.

The neurologists cannot pin it down to being a result of one of the few things they can diagnose (apologies for the cynicism) but my GP is at least been seeing me and is happy to experiment with both licenced and off licence medications to try and get me some relief. The difficulty with these meds is that they all have side effects, the most common being what I will call brain fog. The brain fog manifests itself as a general slowing down, forgetfulness, inability to think as quickly and as straight as you used to and physical things like lack of balance.

I have experimented before with various drugs for neuropathic pain with no clear outcomes but the neuropathy had got to a point a year ago that with the GPs help I started down the medication route again. Tried the standard stuff (gabapentin) building the dose very slowly until the side effects were intolerable and then cut that back and added in some other things. A couple of weeks ago I got to the point where I had no real idea of what was neuropathy and what were side effects. I then took the executive decision to stop the medications. I did it simply to get a new baseline and when I reported to the GP he was quite happy with what I had done. I could also report to him that the underlying neuropathy was much worse than a year ago having spread into the lower part of my face and I felt was beginning to affect my speech.

My conclusion was that the various medications were having some effect but only dampening things down rather eliminating the symptoms. As I increased the dose then that improvement was negated by their side effects.

The upshot is that I am going to start again with the gabapentin but armed with this years experiences, I will be trying to find a balance and take a bit of relief from the neuropathy rather trying to push things to the point where the major neuropathic relief is off set by the debilitating side effects of the medication. We will see what happens.

I relate this anecdote because we get quite a lot of discussion on the forum where things are said to be either "good" or "bad". Just about everything has up sides and down sides, you just have to find a balance.

On a brighter note...got some bloods back yesterday. Hba1c of 47 - I predicted 48+/- 2 and everything else normal. See the DSN for annual review early Jan. Our surgery is really well organised!

HI

I got shingles at the back of my eye and on top of my head and the pain was horrific - the only thing that got it under control and pain free was amitriptyline 🙂