Terrible Neurological Symptoms

[knitty kitty]

@HectorConvector,

Please try adding Niacin to your supplements.  Low Niacin has a connection with suicidal ideation.  Been here, done that.  Niacin made me feel better mentally and physically.  Omega Three fats will help, too.

For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together.  I know this works because I've cracked some vertebrae and this combination relieves the pain.  I was prescribed opioids, but couldn't function or poop, so... I can highly recommend these vitamins for pain relief.  

I adopted a paleo diet, the Autoimmune Protocol Diet which has been shown to improve intestinal health.  Improving intestinal health improves mental health because of the gut brain-axis.  Important neurotransmitter Serotonin is made in the digestive system.  

Please Read...

Association between dietary niacin intake and suicidal ideation: mediating role of C-reactive protein

https://pubmed.ncbi.nlm.nih.gov/40859220/

Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review

https://pubmed.ncbi.nlm.nih.gov/35156556/

Edited March 2 by knitty kitty
Typo correction

[trents]

Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?

[knitty kitty]

@HectorConvector,

Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.  

Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature

https://pubmed.ncbi.nlm.nih.gov/30862772/

Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis

https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/

A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes

https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/

[HectorConvector]

So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry.

On 3/3/2026 at 7:37 PM, knitty kitty said:

@HectorConvector,

Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.  

Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature

https://pubmed.ncbi.nlm.nih.gov/30862772/

Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis

https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/

A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes

https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/

I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.

[HectorConvector]

This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK.

I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I know lol)  and supplied it with all the clinical evidence I've had from tests etc.... After hours of "discussing" with it and finding research it "concluded" it's a chronic neuroplastic sensitization syndrome but of course said I should only get a proper diagnosis from a  doctor. When I saw the doctor on 9th February because this got worse he looked through all my medical history and the course of the "condition". I didn't tell him I'd used ChatGPT or mention what I thought it is because I still don't really know until I have a formal diagnosis. He came with the same conclusion as ChatGPT. Just thought it was an interesting co-incidence perhaps.

As for myself, I'm not forming any conclusions til I can really know exactly what's happening and why and what stops it. Only then can I truly know.

[knitty kitty]

@HectorConvector, 

Have you tried taking 500 mg of the Thiamine Mononitrate that you have left?  

Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand.   

Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency.   No harm in trying it.

Neuroplastic changes in the brain may be caused by thiamine deficiency.   These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's.

I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says.  

Try taking 500 mg Thiamine Mononitrate and look for health changes.

[HectorConvector]

10 hours ago, knitty kitty said:

@HectorConvector, 

Have you tried taking 500 mg of the Thiamine Mononitrate that you have left?  

Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand.   

Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency.   No harm in trying it.

Neuroplastic changes in the brain may be caused by thiamine deficiency.   These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's.

I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says.  

Try taking 500 mg Thiamine Mononitrate and look for health changes.

Yeah I can increase the amount to 500mg/day and see what happens. I know I haven't been consistent enough in supplementing vitamins. 

[Scott Adams]

On 3/6/2026 at 5:16 PM, HectorConvector said:

So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry.

I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.

Severe nerve pain and symptoms like barely urinating for many hours, dry mouth, and sudden swelling are definitely things a doctor should know about as soon as possible, especially if they’re new or getting worse. Neuroplastic pain can be very real and intense even when tests don’t show clear structural problems, but it’s still important that your doctors keep evaluating you and monitoring these symptoms. It’s good that you’re staying open-minded and waiting for proper medical guidance—hopefully the upcoming treatment changes will give you some clearer answers and some relief.

[Tobo]

On 11/21/2021 at 1:26 AM, HectorConvector said:

Hello.

34 year old man. In 2010, I was tested for celiac disease due to having a sister who had it. I never suspected I'd have it as I had more or less no symptoms then. The antibodies were present in the blood test and the gastroscopy revealed the typical damage. 

I immediately went on a gluten free diet, which I've maintained in the 11 years since.

Back then, I had mild shooting and tingling in my feet and sometimes hands. Over most of the next 8 years or so this was manageable and at a low level. It always seemed to get worse after eating, however. The more I eat (of anything, all gluten free), the worse it would get. 

I am also chronically underweight, and so when I try to gain weight, my nerve symptoms get worse.

However, in the last 2 years my neurological symptoms have totally gone out of control, for no obvious reason. I have multiple violent attacks of nerve pain in my feet mostly, every day. It gets violent after meals of any kind, and terribly violent in the evenings. I get stabbing, crushing, burning pains in both feet and sometimes hands. I also started developing painful stabbing headaches behind my eye area and in the frontal part of head. All this gets worse with food intake. 

I've been seeing doctors about this and been on multiple medications to control the pain. Carbamazepine, Gabapentin and Pregabalin, the anti convulsants, had been useless. Duloxetine has been the best so far, and I'm going back on it next week. 

I had a skin biopsy to look at small fibres but the result was normal. There is no diabetes, as all that was tested and I test myself with a blood sugar meter several times a year, everything is normo-glycaemic. 

I don't know why this has got so out of control in the last two years despite being gluten free. My immune system is reacting to everything I eat giving me terrible nerve pains that are getting worse by the very month. I don't know where this will end. Things that trigger the pain include food obviously, heat (I have to sleep with my feet outside of the bed or they burn like hell), dehydration, concentration and excitement of any kind. It's hard to work on anything as the pain will get intense. 

Somehow I get no digestive symptoms at all but I get awful nerve pain every day. Is the the celiac disease do you think, or something else. If it is, why is it so bad after 11+ years on a gluten-free diet? Everything I read about suggests it would get better. Yet it was barely there at diagnosis and now it's extremely violent and far worse since going gluten-free.

Does anyone else have this problem?

I'm 63 and was diagnosed in 2010. Prior to diagnosis I was suspected of having to strokes and medicated according each time. A neurologist called me in to discuss my scan. From that discussion I had a camera down and celiac disease was confirmed. I suffered continued pain and numbness down my left side and was offered amitriptyline, and antidepressants that was also diagnosed for nerve pain. I said no as I didn't want the stigma of being on antidepressants. Seven years later I begged my GP to prescribe them and my life was changed almost immediately. If I'm glutened accidentally whilst eating out then my nerves pain/symptoms get worse but it's nothing compared to taking the medication and feeling a little drowsy every now and then. 

The best of luck for the future.

[knitty kitty]

@Tobo,

Have you been checked for nutritional deficiencies?  Do you currently take a multivitamin or other vitamins or supplements? 

Amitriptyline is one of the medications I was  prescribed.  Amitriptyline is one of the drugs that can cause thiamine insufficiency by blocking thiamine uptake and preventing thiamine from entering cells. 

Fatigue, drowsiness, are symptoms of thiamine insufficiency.  Thiamine is Vitamin B1, one of the essential vitamins our bodies need every day.  

Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet

https://pubmed.ncbi.nlm.nih.gov/19154566/

[HectorConvector]

On 3/8/2026 at 10:50 PM, Scott Adams said:

Severe nerve pain and symptoms like barely urinating for many hours, dry mouth, and sudden swelling are definitely things a doctor should know about as soon as possible, especially if they’re new or getting worse. Neuroplastic pain can be very real and intense even when tests don’t show clear structural problems, but it’s still important that your doctors keep evaluating you and monitoring these symptoms. It’s good that you’re staying open-minded and waiting for proper medical guidance—hopefully the upcoming treatment changes will give you some clearer answers and some relief.

I think it's just part of the natural water retention/release cycle that happens, just in my case the retention part hurts my hyper-sensitive nerves. So its just another thing to add to the huge list of "irritants" rather than the cause. I tend to underhydrate a bit by habit. I don't have any health conditions according to any testing other than celiac disease, at least nothing serious (I have Gilbert syndrome but it's harmless apparently). 

With central sensitization, what should be normal changes in vascular contraction etc... (so including with exercise, and temp changes, changes in blood viscosity etc...) triggers pain in me, generated in the brain, which it doesn't in "normal" people.

[HectorConvector]

I have now been taking 500mg of Thiamine every day for two weeks. No difference in nerve pain intensity/frequency. Should I notice anything by now? Or would I expect this to be a matter of months given nerves heal slowly?

[knitty kitty]

Are you taking the 500 mg all at once?  Higher doses all at once are needed. 

Try taking 500 mg in the morning and then add 500 mg in the afternoon.  

Some people don't get the best effects at first until they get their dosage up to 1500 to 2000 mg a day (in two or three doses).  

I had been taking 100 mg several times a day, and it didn't didn't kick in until I started with the higher doses as recommended by Dr. Derrick Lonsdale.  I've even taken 1000 mg all at once to see what would happen.  Nothing like being your own lab rat.  I found it was better to take it with food than on an empty stomach, but, wow! what a difference!  My brain came back on line!  

Dr. Lonsdale and Dr. Chandler Marrs' website is here...

https://hormonesmatter.com/beyond-deficiency-thiamine-metabolic-stimulant/

https://hormonesmatter.com/thiamine-deficiency-causes-problems/

Edited March 15 by knitty kitty
Typo correction

[HectorConvector]

30 minutes ago, knitty kitty said:

Are you taking the 500 mg all at once?  Higher doses all at once are needed. 

Try taking 500 mg in the morning and then add 500 mg in the afternoon.  

Some people don't get the best effects at first until they get their dosage up to 1500 to 2000 mg a day (in two or three doses).  

I had been taking 100 mg several times a day, and it didn't didn't kick in until I started with the higher doses as recommended by Dr. Derrick Lonsdale.  I've even taken 1000 mg all at once to see what would happen.  Nothing like being your own lab rat.  I found it was better to take it with food than on an empty stomach, but, wow! what a difference!  My brain came back on line!  

Dr. Lonsdale and Dr. Chandler Marrs' website is here...

https://hormonesmatter.com/beyond-deficiency-thiamine-metabolic-stimulant/

https://hormonesmatter.com/thiamine-deficiency-causes-problems/

I have been taking 500mg all at once and around lunch time. Not sure I can do more than that because of the cost. I got the B1 hydrochloride version starting tomorrow. Anyway, so far I've noticed no difference energy/mental wise or nerve pain wise. It just seems to be the same. Regardling energy im in a pretty peak fit condition already so maybe that's why no difference there, though I am a bit skinny. But if there was nerve damage I'd have expected that would take months to heal wouldn't it?

[knitty kitty]

Thiamine Mononitrate isn't absorbed nor utilized well. 

I'm sure you'll get better results with the thiamine hydrochloride!  Let me know how it goes!  

[HectorConvector]

I've been on the hydrochloride for over a week now. No difference in nerve symptoms so far. Only difference I've noticed is my it smells a bit different, less umami and more "musty" or pungent smelling both in the bottle and in my pee lol.

[knitty kitty]

Are you taking your B Complex a magnesium, too?   Thiamine needs B 6 Pyridoxine, Riboflavin B2 and Niacin B 3.

There's sulphur in thiamine, so it can make urine smell funny.  Asparagus does the same thing.  It's harmless.  Molybdenum helps process sulphur out of the body.  

Have you tried taking 500 mg twice a day?   

Have you tried taking a combination of thiamine, B12 and Pyridoxine B 6?  

How's your Vitamin D?

[HectorConvector]

2 hours ago, knitty kitty said:

Are you taking your B Complex a magnesium, too?   Thiamine needs B 6 Pyridoxine, Riboflavin B2 and Niacin B 3.

There's sulphur in thiamine, so it can make urine smell funny.  Asparagus does the same thing.  It's harmless.  Molybdenum helps process sulphur out of the body.  

Have you tried taking 500 mg twice a day?   

Have you tried taking a combination of thiamine, B12 and Pyridoxine B 6?  

How's your Vitamin D?

I take B12 and Vitamin D (1000 I.U) as well. I can't take 500mg twice a day, only once due to cost reasons. I'm getting more than the minimum rda of Niacin in my diet but not supplementing it. 

[knitty kitty]

Stick with the thiamine hydrochloride.  Nerves heal and grow back slowly.  

I do wish I could borrow Enterprise's transporter and beam some Benfotiamine and Neuromag to you.  Benfotiamine is great for neuropathy.  

Do you have a B Complex?  Are you getting healthy fats, Omega threes?  Olive oil, flaxseed oil, sunflower seed oil?  The Omega threes help heal the nerves, too.  

[HectorConvector]

14 minutes ago, knitty kitty said:

Stick with the thiamine hydrochloride.  Nerves heal and grow back slowly.  

I do wish I could borrow Enterprise's transporter and beam some Benfotiamine and Neuromag to you.  Benfotiamine is great for neuropathy.  

Do you have a B Complex?  Are you getting healthy fats, Omega threes?  Olive oil, flaxseed oil, sunflower seed oil?  The Omega threes help heal the nerves, too.  

I don't have a B complex but I am getting the required amounts of all the B vits after looking what my diet contains. Yeah I eat a lot of omerga 3 fatty acids as I know they're good and I've always eaten quite a lot of that sort of thing.

[Stegosaurus]

I have tons of food sensitivities from a 4 year stint of dysbiosis and resulting leaky gut.  I don't have nerve issues.  But boy do I have painful duodenal inflammation and fatigue.  I've steadily lost weight and got down to 109 lb (I'm 5'10" and in good form at 140 lb).  It's taken 4 months, but I finally have been able to gain a little, up to 119 lb.  I have to get healthier before I can withstand killing off the dysbiosis.

I have the MFTHR gene, so I need the methylated B vitamins at high doses.  

[Sue7171]

On 11/20/2021 at 5:26 PM, HectorConvector said:

Hello.

34 year old man. In 2010, I was tested for celiac disease due to having a sister who had it. I never suspected I'd have it as I had more or less no symptoms then. The antibodies were present in the blood test and the gastroscopy revealed the typical damage. 

I immediately went on a gluten free diet, which I've maintained in the 11 years since.

Back then, I had mild shooting and tingling in my feet and sometimes hands. Over most of the next 8 years or so this was manageable and at a low level. It always seemed to get worse after eating, however. The more I eat (of anything, all gluten free), the worse it would get. 

I am also chronically underweight, and so when I try to gain weight, my nerve symptoms get worse.

However, in the last 2 years my neurological symptoms have totally gone out of control, for no obvious reason. I have multiple violent attacks of nerve pain in my feet mostly, every day. It gets violent after meals of any kind, and terribly violent in the evenings. I get stabbing, crushing, burning pains in both feet and sometimes hands. I also started developing painful stabbing headaches behind my eye area and in the frontal part of head. All this gets worse with food intake. 

I've been seeing doctors about this and been on multiple medications to control the pain. Carbamazepine, Gabapentin and Pregabalin, the anti convulsants, had been useless. Duloxetine has been the best so far, and I'm going back on it next week. 

I had a skin biopsy to look at small fibres but the result was normal. There is no diabetes, as all that was tested and I test myself with a blood sugar meter several times a year, everything is normo-glycaemic. 

I don't know why this has got so out of control in the last two years despite being gluten free. My immune system is reacting to everything I eat giving me terrible nerve pains that are getting worse by the very month. I don't know where this will end. Things that trigger the pain include food obviously, heat (I have to sleep with my feet outside of the bed or they burn like hell), dehydration, concentration and excitement of any kind. It's hard to work on anything as the pain will get intense. 

Somehow I get no digestive symptoms at all but I get awful nerve pain every day. Is the the celiac disease do you think, or something else. If it is, why is it so bad after 11+ years on a gluten-free diet? Everything I read about suggests it would get better. Yet it was barely there at diagnosis and now it's extremely violent and far worse since going gluten-free.

Does anyone else have this problem?

I had lyme disease for about 14 years and was also diagnosed with celiac disease about midway through.  I had bad leaky gut food and chemical sensitivity like crazy dental issues I had to go on a really strict diet for 4 years to heal my gut and see a lyme Dr to heal the lyme disease 

Both sides of my family are celiac 

[Scott Adams]

17 hours ago, Stegosaurus said:

I have tons of food sensitivities from a 4 year stint of dysbiosis and resulting leaky gut.  I don't have nerve issues.  But boy do I have painful duodenal inflammation and fatigue.  I've steadily lost weight and got down to 109 lb (I'm 5'10" and in good form at 140 lb).  It's taken 4 months, but I finally have been able to gain a little, up to 119 lb.  I have to get healthier before I can withstand killing off the dysbiosis.

I have the MFTHR gene, so I need the methylated B vitamins at high doses.  

That sounds really rough, and losing that much weight with ongoing duodenal inflammation and fatigue is a lot for your body to handle. It is encouraging that you have managed to gain a little back, because that at least suggests you are moving in the right direction. Many people with gut damage seem to end up juggling multiple food sensitivities while trying to calm inflammation and rebuild strength, so your situation will probably sound familiar to others here. The part about needing to get stronger before tackling the dysbiosis also makes a lot of sense, and I hope the progress continues steadily for you.

[knitty kitty]

I respectfully disagree, @Scott Adams.  

Thiamine deficiency (and deficiencies in other B vitamins) can cause unintentional weight loss.  The body will use stored fat and muscle to provide energy in thiamine deficiency.  This results in muscle wasting, fat loss, fatigue, and difficulty putting on muscle mass.  Using stored fat and muscle for energy requires less thiamine than the amount of thiamine required to process carbohydrates. 

Thiamine deficiency causes gastrointestinal Beriberi, a localized thiamine deficiency in the digestive tract, which results in dysbiosis, inflammation, and abdominal pain.  Carbohydrates can remain undigested in the intestinal system, which bacteria feed on, encouraging SIBO, and prompting dysbiosis, leaky gut, and inflammation.  Following a low carbohydrate Keto diet, like the AutoImmune Protocol diet, can help because it removes excess carbohydrates that the bacteria feed on.  SIBO can cause weight gain due to inflammational edema of the intestines (water retention in the tissues of the intestines), gas, and slowed transit times.  SIBO bacteria can absorb nutrients from your food before you can, resulting in additional deficiencies of other B vitamins and nutrients.  

Thiamine deficiency is corrected with high dose Thiamine Hydrochloride, Benfotiamine and/or Thiamine TTFD (tetrahydrofurfuryl disulfide).  High dose thiamine in the form Benfotiamine has been shown to promote intestinal healing.  It improves "leaky gut".  High dose Benfotiamine will improve the gut microbiome in favor of beneficial bacteria.  Thiamine TTFD is beneficial for neurological issues.  Thiamine TTFD improves brain function and is beneficial for mental health issues such as depression and anxiety, and other neurological problems like Ataxia and Brain Fog.  

 Methylated (activated) B Complex vitamins help correct Thiamine deficiency because all eight B vitamins work together.  Vitamin C and the four fat soluble vitamins (A, D, E, and K) are needed as well.  Minerals like Magnesium, Calcium, Iron,  Potassium, and others may need to be supplemented as well.  Thiamine and Magnesium make life sustaining enzymes together.  

Supplementing with high doses of Thiamine and other water soluble B vitamins will lower pain and inflammation, improve fatigue, improve muscle mass gain, as well as regulate the intestinal microbiome! 

So, @Stegosaurus, you can get healthier while improving gut dysbiosis at the same time!

References:

Thiamine, gastrointestinal beriberi and acetylcholine signaling

https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/

Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids

https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/

[Stegosaurus]

I've been following a low carbohydrate Keto AutoImmune Protocol diet.  It's all I can handle.  I'm so excited to learn about thiamine from you.  The benfotiamine should arrive today.  I sure hope it's my missing piece!!!