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Robert1

Member
Relationship to Diabetes
Type 2
Hi all,

This is my first post on this forum. Well, it's actually my first membership on a diabetic forum. I normally rely on advice from my doctors, and I spend a good deal of time trawling the web and medical papers, but I thought that perhaps some anecdotal evidence from other diabetics may offer me an alternative insight into my conditions.

Some background stuff about me:
I'm a 46 year old Caucasian male, type II diabetic (diagnosed 2017, but probably undiagnosed 15 years previously)
BMI is 26.7, weight is 82kg (12st), so I need to lose at least 4kg (0.6 stone)
December 2020 Hb1Ac: 94, started Gliclazide 80mgx2 daily.

I have severe, permanent Small Fibre Neuropathy (SFN) in all my limbs (entire legs and arms), hands, feet, face and Fibromyalgia (FM) mainly in my torso. I also suffer from Hemicrania Continua in the left-side of my head.

Until 2017, I was with a terrible doctor surgery who were reluctant to test me for diabetes despite a prevalent family history and a twin brother testing positive for the disease just months earlier. Both of us had also been complaining of nerve pain, mainly in our feet, since our twenties, which most doctors fobbed off as plantar fasciitis and various other conditions. After insisting to having an Hb1Ac test and testing above 49 I immediately moved to a recommended surgery where I am seen by a very thorough doctor who has referred me to neurologists and various specialists.

Both my brother and I, believe we have now been properly diagnosed with SFN, although mine is more progressed throughout my entire body and his is still only in his legs. I have recently also lost sensation in all finger tips and my body almost always feels like it has been doused in petrol and set alight. We're both convinced that our nerve pain is a result of diabetic neuropathy and so do our neurologists who gave us entirely independent diagnoses. Yet, in a recent PIP application, which was fortunately successful, my doctor stated in a supporting letter that he was unsure if the neuropathy was diabetic related. Despite being very supportive and thorough on everything else, I find my doctor's stance on my nerve condition utterly bewildering. I accept that SFN/diabetic neuropathy is probably rare in prediabetes but it is not unheard of and we also have a family history of it.

I was wondering if anyone here has had difficulties with nerve pain in their early diabetes and if they would be willing to share their experience?

Also, during lockdown, I lost control of my diet so my Hb1Ac in December leapt to 94 from 48. Of course, this has had a detrimental affect on my pain but I am now on Gliclazide and my blood sugars are starting to look more normal. I only have myself to blame, but I was also wondering if anyone had experienced any reduction of nerve pain after getting their sugars under control because I'm not noticing much change. Although, I do understand that nerve damage is permanent. I'm on 3x1200 Gabapentin daily. Each dose lasts about 4 hours and shaves off about 30-40% of the pain. It also makes me extremely high a lot of the time. Existing in this state is simply unbearable and at times it seems impossible to live with.

Even if it's purely anecdotal, I would be extremely appreciative of any insights that people would be willing to share with me.

Many thanks
Rob

(My replies may be a little slow as typing is an agonising exercise and I don't have a lot of luck with speech-to-text apps)
 

Docb

Moderator
Relationship to Diabetes
Type 2
Hi @Robert1 and welcome to the forum.

Well, I can relate to a lot of what you say. Briefly, about 12 yrs ago several things kicked off at around the same time. Type 2 diabetes, odd sensations in my nose, a nystagmus and tinnitus. All crept on over the years. A couple of years ago the diabetes went awry but with the help of this forum I have that under control. The sensations in my nose now cover the whole of my face but the nystagmus and tinnitus have not changed much.

I spoke to the neurologist I have been seeing a couple of weeks ago and asked again whether he thought the neuropathy was related to diabetes and he thought not. It's in the wrong place, it's likely related to the nystagmus and tinnitus and they are unlikely to be related to diabetes. In answer to your point about whether getting diabetes under control affected the nerve pain, my experience is that it did not, again supporting the idea that it is not diabetes related.

That's my experience for what it is worth. My own assessment is that treating neurological issues which do not show anything sinister on any sort of scan is, based on the experience of the neurologist. Another way of putting it is that it is largely based on guesswork. I have come to terms with that and hope that the progression of the neuropathy will not outpace the general deterioration that comes with advancing years (I'm 75). I appreciate you are in a different age bracket.

By the way, I've tried all the neurological pain pills - amytryptylene, gabapentin, and one other, I can't remember what it was - and none had much lasting effect.

Not a lot of help I'm afraid but you are not alone when it comes to being frustrated by the fact that there are far more unknowns in neurology than there are knowns.
 

mikeydt1

Well-Known Member
Relationship to Diabetes
Type 2
before even registering on here as a diabetic i have been on gabapentin for many years it was last increased a few years ago they wanted me to try 6*300g but it started making my hands shake so it was reduced to 5 a day then it was juggled around a bit. i never really know if it works or not.

i do like the intro of Caucasian sounds like some kind of police thing :cool: any way welcome to the forum Robert and i do hope you get the information your looking for.
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Well it's not a word commonly used in the UK, until watching eg Cagney & Lacey on TV was only a word I'd ever heard or seen used in the title of The Caucasian Chalk Circle - they were right though - The White Chalk Ring doesn't sound half as interesting as the title of a play, does it!!
 

Robert1

Member
Relationship to Diabetes
Type 2
Hi @Robert1 and welcome to the forum.

Well, I can relate to a lot of what you say. Briefly, about 12 yrs ago several things kicked off at around the same time. Type 2 diabetes, odd sensations in my nose, a nystagmus and tinnitus. All crept on over the years. A couple of years ago the diabetes went awry but with the help of this forum I have that under control. The sensations in my nose now cover the whole of my face but the nystagmus and tinnitus have not changed much.

I spoke to the neurologist I have been seeing a couple of weeks ago and asked again whether he thought the neuropathy was related to diabetes and he thought not. It's in the wrong place, it's likely related to the nystagmus and tinnitus and they are unlikely to be related to diabetes. In answer to your point about whether getting diabetes under control affected the nerve pain, my experience is that it did not, again supporting the idea that it is not diabetes related.

That's my experience for what it is worth. My own assessment is that treating neurological issues which do not show anything sinister on any sort of scan is, based on the experience of the neurologist. Another way of putting it is that it is largely based on guesswork. I have come to terms with that and hope that the progression of the neuropathy will not outpace the general deterioration that comes with advancing years (I'm 75). I appreciate you are in a different age bracket.

By the way, I've tried all the neurological pain pills - amytryptylene, gabapentin, and one other, I can't remember what it was - and none had much lasting effect.

Not a lot of help I'm afraid but you are not alone when it comes to being frustrated by the fact that there are far more unknowns in neurology than there are knowns.
Hi Docb

Thanks for sharing.

Yes, I've had countless more misdiagnoses than correct ones. I've always had so much more respect for a doctor who just says they 'don't know' and then refers me to a specialist. I've seen several neurologists but the one I see now is incredibly bright, curious, humble and honest. I met him at a pain conference two years ago where he was a guest speaker. I immediately asked to be referred to his clinic and 6 months later found myself sitting in front of a panel of 7 neurologists which he was heading. It was then that he made a diagnosis of diabetic related SFN, the same as my brother who I had not mentioned yet. So it's strange to me that my doctor still seems unconvinced. But, anyhow.

I'm coming round to the fact that my pain conditions may never be fully diagnosed. I just need to focus on how to stop them from getting worse and how to treat them. Previously I had been prescribed everything from mild pain killers to every kind of NSAID. Morphine is the only drug I haven't tried yet. I want to try Pregabalin again as I never took it at a high dosage and have read that the cognitive impairment is milder. But you're right about no drug is ever going to be 100% effective though and they weaken over time.
 

Robert1

Member
Relationship to Diabetes
Type 2
before even registering on here as a diabetic i have been on gabapentin for many years it was last increased a few years ago they wanted me to try 6*300g but it started making my hands shake so it was reduced to 5 a day then it was juggled around a bit. i never really know if it works or not.

i do like the intro of Caucasian sounds like some kind of police thing :cool: any way welcome to the forum Robert and i do hope you get the information your looking for.
Haha, my background info was a cut and paste job from a previously written and more formal text. How embarrassing.

I spoke to my GP today after reading your reply and we've agreed to adjust the times and dosages. Thanks.
 

Robert1

Member
Relationship to Diabetes
Type 2
Well it's not a word commonly used in the UK, until watching eg Cagney & Lacey on TV was only a word I'd ever heard or seen used in the title of The Caucasian Chalk Circle - they were right though - The White Chalk Ring doesn't sound half as interesting as the title of a play, does it!!
Haha. I have a German grandmother.
 

mikeyB

Well-Known Member
Relationship to Diabetes
Type 1
SFN can be caused by multiple conditions, not just diabetes. In your case in particular the fact that your brother developed the identical condition more or less at the same age makes it almost unlikely that it is due to diabetes. It’s unusual for this rare condition to be a presenting feature of diabetes, for sure, and pre-dating the diagnosis of diabetes makes it very unlikely. As @Docb comments, there are more unknowns than known in neurology, and I would think it is more likely that this is a familial condition.

This is why your doctor commented that it may not be due to diabetes, and just because a neurolgists have said it is, that is because it is easy to say. I had that said to me when my neurological problems started. I’m now in a wheelchair because I can barely walk, and that’s because I’ve got Progressive Lateral Sclerosis, which is a very rare (non fatal) type of MND. Sod all to do with diabetes. To be fair, it’s a diagnosis you reach by excluding other diagnoses. And the only way you can distinguish it from MND is the fact that it started 5 years ago, I’m still alive, and it only affects my legs at the moment. It doesn’t matter what the cause is in any event, it’s treatment you’re looking for.

To stop my nerves misbehaving, the muscle twitches and cramps, I have never used any of the standard medications, because they all have horrible side effects, both using them and stopping them. I can suppress the symptoms almost completely using higher strength CBD oil, which has no side effects at all. Just tastes odd, and is expensive. No carbs, mind.

I used to be a Doctor, but before I ever had diabetes I had neck and back problems. I went to an osteopath who did acupuncture as well as twist me round. The acupuncture worked a treat, but I don’t suppose you’ve even thought of trying that to see what happens. You never know. You’ll come away from that with a lighter wallet, for sure. That would be less likely to work than the CBD oil, though.
 

mikeydt1

Well-Known Member
Relationship to Diabetes
Type 2
Jenny me and my partner loved all the old American police crime programs lost count how many times we watched them over the years.

Robert don't be embarrassed that was one of the best new member intros done and it gives people on here the knowledge to try and help you.

i am curious as the Gabapentin dose seems very high 3*1200 i struggle with 5*300 has yours been reviewed recently? at those levels it will certainly be giving you highs. mine is supposed to be 2 1 2

Mikey i have wondering about the CBD oil as an alternative as i am getting riddled with pain and it is so not healthy.
 

Robert1

Member
Relationship to Diabetes
Type 2
SFN can be caused by multiple conditions, not just diabetes. In your case in particular the fact that your brother developed the identical condition more or less at the same age makes it almost unlikely that it is due to diabetes. It’s unusual for this rare condition to be a presenting feature of diabetes, for sure, and pre-dating the diagnosis of diabetes makes it very unlikely. As @Docb comments, there are more unknowns than known in neurology, and I would think it is more likely that this is a familial condition.

This is why your doctor commented that it may not be due to diabetes, and just because a neurolgists have said it is, that is because it is easy to say. I had that said to me when my neurological problems started. I’m now in a wheelchair because I can barely walk, and that’s because I’ve got Progressive Lateral Sclerosis, which is a very rare (non fatal) type of MND. Sod all to do with diabetes. To be fair, it’s a diagnosis you reach by excluding other diagnoses. And the only way you can distinguish it from MND is the fact that it started 5 years ago, I’m still alive, and it only affects my legs at the moment. It doesn’t matter what the cause is in any event, it’s treatment you’re looking for.

To stop my nerves misbehaving, the muscle twitches and cramps, I have never used any of the standard medications, because they all have horrible side effects, both using them and stopping them. I can suppress the symptoms almost completely using higher strength CBD oil, which has no side effects at all. Just tastes odd, and is expensive. No carbs, mind.

I used to be a Doctor, but before I ever had diabetes I had neck and back problems. I went to an osteopath who did acupuncture as well as twist me round. The acupuncture worked a treat, but I don’t suppose you’ve even thought of trying that to see what happens. You never know. You’ll come away from that with a lighter wallet, for sure. That would be less likely to work than the CBD oil, though.
Thank you, Mike.

Your comments are very interesting and I think I will definitely consider that the conditions may be unrelated and that it could just be an unfortunate coincidence. I think this study suggests what you say is true, https://n.neurology.org/content/88/16_Supplement/P5.118. Although, any consumption of high sugar foods does set off our nerves to excruciating levels for several hours of agony. I don't know if anyone else has similar response to sugar?

I'm sorry to hear about your PLS. I can only imagine how challenging it must be to live with.

The only reason I am curious about the cause of the nerve damage, is that if it is something I'm doing, such as eating the wrong foods, then I will know how I can possibly halt the damage and prevent the progression of the disease. But never knowing the cause seems to be something that I may have to eventually come to terms with. I've spent 20 years looking for answers and I'm not sure if any of the ones I have are correct or are doing me any good.

What I do know is that the neuralgia/neuropathy (whatever it's technically called) has progressed at an alarming rate over the last 3-4 years and, at 46, I am utterly terrified of what this means for my future. I am hanging onto my job by a thread. I'm a ceramics teacher and I have had to give up all machine demonstrations and almost all other practical lessons. I've reduced my hours of practical teaching to once a fortnight and now typing coursework and instructions is also sheer torture. Typing this post is torture. My fingers, my torso, my face are all burning with sharp piercing pains.

Actually, I realise how exhausted I am as I type this. I'm so grateful for all your answers though. But I am so tired. Because I am not winning this battle and not long from now my life is going to be worth so little.

And yes, I have tried almost everything I can think of - CBD, acupuncture, osteopaths, medications, even mushrooms. Nothing really works long term unless it completely intoxicates me.
 

Robert1

Member
Relationship to Diabetes
Type 2
Jenny me and my partner loved all the old American police crime programs lost count how many times we watched them over the years.

Robert don't be embarrassed that was one of the best new member intros done and it gives people on here the knowledge to try and help you.

i am curious as the Gabapentin dose seems very high 3*1200 i struggle with 5*300 has yours been reviewed recently? at those levels it will certainly be giving you highs. mine is supposed to be 2 1 2

Mikey i have wondering about the CBD oil as an alternative as i am getting riddled with pain and it is so not healthy.
I must rest my hands after the last post, but your 5*300 has given me the idea of dividing my daily dosage into 4 as apposed to 3. Thanks.
 

Yendor

New Member
Relationship to Diabetes
Type 2
Hi all,

This is my first post on this forum. Well, it's actually my first membership on a diabetic forum. I normally rely on advice from my doctors, and I spend a good deal of time trawling the web and medical papers, but I thought that perhaps some anecdotal evidence from other diabetics may offer me an alternative insight into my conditions.

Some background stuff about me:
I'm a 46 year old Caucasian male, type II diabetic (diagnosed 2017, but probably undiagnosed 15 years previously)
BMI is 26.7, weight is 82kg (12st), so I need to lose at least 4kg (0.6 stone)
December 2020 Hb1Ac: 94, started Gliclazide 80mgx2 daily.

I have severe, permanent Small Fibre Neuropathy (SFN) in all my limbs (entire legs and arms), hands, feet, face and Fibromyalgia (FM) mainly in my torso. I also suffer from Hemicrania Continua in the left-side of my head.

Until 2017, I was with a terrible doctor surgery who were reluctant to test me for diabetes despite a prevalent family history and a twin brother testing positive for the disease just months earlier. Both of us had also been complaining of nerve pain, mainly in our feet, since our twenties, which most doctors fobbed off as plantar fasciitis and various other conditions. After insisting to having an Hb1Ac test and testing above 49 I immediately moved to a recommended surgery where I am seen by a very thorough doctor who has referred me to neurologists and various specialists.

Both my brother and I, believe we have now been properly diagnosed with SFN, although mine is more progressed throughout my entire body and his is still only in his legs. I have recently also lost sensation in all finger tips and my body almost always feels like it has been doused in petrol and set alight. We're both convinced that our nerve pain is a result of diabetic neuropathy and so do our neurologists who gave us entirely independent diagnoses. Yet, in a recent PIP application, which was fortunately successful, my doctor stated in a supporting letter that he was unsure if the neuropathy was diabetic related. Despite being very supportive and thorough on everything else, I find my doctor's stance on my nerve condition utterly bewildering. I accept that SFN/diabetic neuropathy is probably rare in prediabetes but it is not unheard of and we also have a family history of it.

I was wondering if anyone here has had difficulties with nerve pain in their early diabetes and if they would be willing to share their experience?

Also, during lockdown, I lost control of my diet so my Hb1Ac in December leapt to 94 from 48. Of course, this has had a detrimental affect on my pain but I am now on Gliclazide and my blood sugars are starting to look more normal. I only have myself to blame, but I was also wondering if anyone had experienced any reduction of nerve pain after getting their sugars under control because I'm not noticing much change. Although, I do understand that nerve damage is permanent. I'm on 3x1200 Gabapentin daily. Each dose lasts about 4 hours and shaves off about 30-40% of the pain. It also makes me extremely high a lot of the time. Existing in this state is simply unbearable and at times it seems impossible to live with.

Even if it's purely anecdotal, I would be extremely appreciative of any insights that people would be willing to share with me.

Many thanks
Rob

(My replies may be a little slow as typing is an agonising exercise and I don't have a lot of luck with speech-to-text apps)
I’m type 2 diagnosed in January. Age 71, 90kg, 190cm tall. I had loss of feeling and dry skin in my toes/ feet about five years ago and brought it to the attention of doc who suggested furthur tests but nobody suggested diabetes until I had a blood test around xmas’20. I exercise lots, walks, bike rides but winter is long and slonking on the setee in front of the woodburner is easy on long winter nights. I loved craft beers but sadly they will now have to be cut out. I have a serious question which may cause mirth. I’ve been sent a blood sugar tester by Contour. Here’s my idea. Can I use this gadget to test the sugar content of draught beers?
 

Robert1

Member
Relationship to Diabetes
Type 2
I’m type 2 diagnosed in January. Age 71, 90kg, 190cm tall. I had loss of feeling and dry skin in my toes/ feet about five years ago and brought it to the attention of doc who suggested furthur tests but nobody suggested diabetes until I had a blood test around xmas’20. I exercise lots, walks, bike rides but winter is long and slonking on the setee in front of the woodburner is easy on long winter nights. I loved craft beers but sadly they will now have to be cut out. I have a serious question which may cause mirth. I’ve been sent a blood sugar tester by Contour. Here’s my idea. Can I use this gadget to test the sugar content of draught beers?
I have no idea, but you definitely win Post of the Day! Bravo! :D
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
No, there used to be some glucose test sticks you dipped into your urine which I've heard people say they dip in their Coca Cola etc in pubs to make sure they have the Diet version, so presumably you could used them on beer. In a human the excess glucose doesn't spill into our urine until it measures around 11.0 in our blood - so how accurate these sticks might be I haven't a clue.
 

Docb

Moderator
Relationship to Diabetes
Type 2
@Robert1, I have an idea that the intensity of my neuropathy has something to do with blood glucose. It tends to intensify in the hour or so after I have eaten either breakfast or evening meal, the two higher carbohydrate meals I have in the day. It is not as simple as blood glucose level, higher intensity simply does not correlate with higher or lower blood glucose levels. I have done enough tests to be sure of that. I am wondering if it has something to do with changing levels of blood glucose, the sort of thing that happens as blood glucose rises, peaks and falls after eating. Must work on trying to devise some sort of testing regime to see if the idea has any merit. In the mean time, don't give up thinking about what is going on. I am sure it is noting to do with what you are doing.

And @Yendor, time to do some experiments and find out if there is any correlation with what number you get on your meter and how much carbohydrate the manufacturer says is in the beer. If you go down that route then don't waste the beer. More seriously, in my world you don't have to give up your beer. Limit it yes, drink gills rather than quarts, go for quality rather than quantity, reduce something else to compensate but don't think about giving something you enjoy in its entirety. It's all about balance and finding what works for you in the round.
 

Robert1

Member
Relationship to Diabetes
Type 2
@Robert1, I have an idea that the intensity of my neuropathy has something to do with blood glucose. It tends to intensify in the hour or so after I have eaten either breakfast or evening meal, the two higher carbohydrate meals I have in the day. It is not as simple as blood glucose level, higher intensity simply does not correlate with higher or lower blood glucose levels. I have done enough tests to be sure of that. I am wondering if it has something to do with changing levels of blood glucose, the sort of thing that happens as blood glucose rises, peaks and falls after eating.
We also think that this is probably true. Our neuropathy flares up quite severely as soon as 30 minutes after eating something with high sugar or carbs. For dinner, I don't touch anything with more than 10 carbs and 2 sugars in a portion. I also avoid saturated fats. Lunch is lettuce, avocado and protein strips. No dairy at all and I snack on seaweed, olives, and a few nuts. Fortunately, I absolutely love seaweed.
 

mikeyB

Well-Known Member
Relationship to Diabetes
Type 1
I forgot to ask, are you two identical twins, or were you part of a buy one, get one free deal?

The reason I ask is that 30% of folk suffering from SFN have a defective gene, and I think it’s likely that both of you have that defect. It doesn’t matter what the cause is, it will always behave like all peripheral neuropathies, and be worsened symptomatically by high carb food. That said, there is no diet that will make the condition worse, it’s the symptoms that get worse with certain foods. Treatment is, of course, purely symptomatic.

The other info that I would like know, and this is have you been referred to a pain clinic at the hospital? They are the folks who have expertise in this field. From what you have said, you haven’t yet tried opiates, which like Gabapentin work on the brain, but that is the next step upwards to try. Pain clinics also use Ketamine infusions, which can give more prolonged relief.

By the way, I use a fair amount of seaweed in cooking. I always put a couple of strips of dried Kelp in casseroles or stews, removing it before serving. I use it to add an Umami flavour to enhance the flavour of other ingredients. I made a creamy seafood sauce last evening using kelp as a herb. I get my supplies from Mara in Edinburgh, and did even when we lived on the Isle of Mull in the Inner Hebrides, where farmers use seaweed as fertiliser to improve the soil to grow Highland Coos and whisky. Seaweed has more vitamins and trace elements than fillet steak, and is a sight cheaper.
 

Robert1

Member
Relationship to Diabetes
Type 2
I forgot to ask, are you two identical twins, or were you part of a buy one, get one free deal?

The reason I ask is that 30% of folk suffering from SFN have a defective gene, and I think it’s likely that both of you have that defect. It doesn’t matter what the cause is, it will always behave like all peripheral neuropathies, and be worsened symptomatically by high carb food. That said, there is no diet that will make the condition worse, it’s the symptoms that get worse with certain foods. Treatment is, of course, purely symptomatic.

The other info that I would like know, and this is have you been referred to a pain clinic at the hospital? They are the folks who have expertise in this field. From what you have said, you haven’t yet tried opiates, which like Gabapentin work on the brain, but that is the next step upwards to try. Pain clinics also use Ketamine infusions, which can give more prolonged relief.

By the way, I use a fair amount of seaweed in cooking. I always put a couple of strips of dried Kelp in casseroles or stews, removing it before serving. I use it to add an Umami flavour to enhance the flavour of other ingredients. I made a creamy seafood sauce last evening using kelp as a herb. I get my supplies from Mara in Edinburgh, and did even when we lived on the Isle of Mull in the Inner Hebrides, where farmers use seaweed as fertiliser to improve the soil to grow Highland Coos and whisky. Seaweed has more vitamins and trace elements than fillet steak, and is a sight cheaper.
Identical. To be fair, I think all twins are buy get one free. :D

Yes, we've certainly noticed the symptomatic repercussions of eating high carb foods.

Before I answer your next question, full disclosure. I should have mentioned that I have non-alcoholic liver disease, which also flared up in December to an ALT of 284. Pretty bad. With the combination of liver disease and diabetes the doctors reckon I have metabolic syndrome. So my situation is a little complex. I've been seeing neurologists for several years and it has not been easy to assess me.

When the pain was only in my feet and face, and they were considered separate conditions, I was referred to the National Hospital for Neurology and Neurosurgery at the suggestion of The Migraine Clinic (or Centre, not sure now) in about 2012. At the NHNN, for about 7 years, I was seen by the same head pain neurologist every 12-18 months and in-between by several different registrars. The neurologist kept the scope of her investigation quite narrow and the treatments were limited to a range that was expected for rare headache conditions. Two MRI scans of my head produced no answers. After responding positively to a drug called Indomethacin, I was diagnosed with Hemicrania Continua but I was still presenting other pain symptoms that were not typical of the condition. The neurologist was not willing to discuss and consider the possible impact of my other conditions. She would become quite angry and impatient when I mentioned symptoms that didn't quite fit her textbook descriptions. The last time I saw her, in 2019, she shouted at me because I said 'stress' was one of the main triggers of my pain. In fact, she had shouted at me on many occasions and I always felt intimidated to give the answers that she expected. I learnt later that this was quite normal for her, but, obviously, this didn't help in achieving an accurate evaluation.

In 2019, after going to a pain conference on cluster headaches, I asked my doctor to refer me to the Pain Management Centre at St Thomas Hospital, after meeting a neurologist who was friendly and curious about my case. As mentioned in a previous post, I sat in front of him and a panel of about 7 other neurologists when he diagnosed that all my pain was likely connected to SFN, and that the combination of my other conditions was a factor that needed to be considered. The St Thomas team have been brilliant, friendly, kind and keen to explore several options that were never discussed at the NHNN. At the beginning of 2020, I started with nerve blockers at the back of my head for the Hemicrania Continua and there has been some success with these. Unfortunately, St Thomas is currently overwhelmed with COVID so my consultations and treatments have been halted since March. This is understandable though. The Gabapentin has being working quite well anyway, despite the intense highs. I am due for a phone consultation soon and I am looking forward to starting the conversation with them again.

I have to say that all the responses here have been so informative and insightful. It's really opened up my mind and I can't express enough how much I appreciate everyone's input.

So, thank you everyone.
 
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Robert1

Member
Relationship to Diabetes
Type 2
Pain clinics also use Ketamine infusions, which can give more prolonged relief.

By the way, I use a fair amount of seaweed in cooking. I always put a couple of strips of dried Kelp in casseroles or stews, removing it before serving. I use it to add an Umami flavour to enhance the flavour of other ingredients. I made a creamy seafood sauce last evening using kelp as a herb. I get my supplies from Mara in Edinburgh, and did even when we lived on the Isle of Mull in the Inner Hebrides, where farmers use seaweed as fertiliser to improve the soil to grow Highland Coos and whisky. Seaweed has more vitamins and trace elements than fillet steak, and is a sight cheaper.
I'll look up those infusions.

You've inspired me to experiment a lot more with seaweed. It's a very underrated ingredient!
 
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