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I can’t have caffeine as it overstimulates my nervous system. 

That’s interesting to read. Thank you. I’ve recently started injecting growth hormone as I have a deficiency and it’s slowed down my tachycardia enough to stop taking Nebivolol. 

Hi. I have EDS and POTS. I’ve got varicose veins around my rectum and butt cheeks. I’m guessing they are there as I sit a lot and have my legs elevated. Other people I know get them around the back of their knees as they sit normally. 

Caffeine is a stimulant and it over excites the nerves

I’m low carb, vegan mainly an anti inflammatory diet. No caffeine, gluten, dairy, sugar, processed, spice, alcohol. Lots of veggies! 

Yes, makes my nerves more comfortable and gives me a bit more energy. I’m vegan anyway so always topped up a bit and I’m glad I did as I can show deficient in iron and D3 as I have some absorption issues. 

It helps me. I inject weekly and take sublingual B12 daily 

When my dysautonomia reared it’s ugly head at the same time as Small Fibre Neuropathy in 2007 I was told it was the way I was thinking caused it. I was shocked but not surprised. Doctors often say things are psychological when they don’t know what it wrong or how to treat it. Every condition I’ve ever had have often been documented as being from a psychological origin. I’m wary of doctors. The good ones do all they can for us the poor ones haven’t got the guts to say “I don’t know”, as their egos won’t let them so they imply it’s created in our minds. 

My BP has been up and down for years. It can fluctuate several times per day or be specifically low/high for days/weeks/months on end. 

I’ve been getting this problem and linked it to my vagus nerve. As I have EDS my neck isn’t in great shape so I’ve been working with an osteopath to help with the neck nerve entrapment 

Yes. Many have mast cell/histamine issues. I’ve had to radically overhaul my diet to cope. I also get reactions to meds and household items like cleaning products and toiletries. I eat low carb, no sugar, dairy, caffeine, spices, gluten or processed. I eat low histamine foods. I take a antihistamine if I can’t avoid certain foods like in hospital etc. i supplement where possible. 

I stopped drinking caffeine drinks years ago as I was getting very jittery and sick. Of course I realised why when years later I was diagnosed with AD and POTS. The caffeine is a stimulant and makes nerves buzz! 

Keep hydrated. I drink 8pts of mixed fluids 

I was diagnosed by a rheumatologist at my request. Based on my clinical history, examination and Brighton Scale. Link through my family is IBS and spine/neck degeneration. 

I have one I don’t use it every day but when I have a flare of neck/heart/chest/gut issues I use it on a low setting. I found out about it on social media. Some people have an implant of a vagus nerve stimulator. 

I saw one cardiologist who was clueless about POTS. I had two tilt table tests but the results were interpreted by a doctor who sat on the fence and wouldn’t commit to a POTS diagnosis. Finally I saw a cardiologist electrophysiologist and he looked at both TTT results and diagnosed POTS straightaway. This particular doctor was highly skilled in arrhythmias and knew even from my clinical symptoms I’d got it. 

I have a lot of gut issues like gastroparesis and IBS. I also have mast cell problems which mean I have a lot of intolerances and allergies. I’ve had to re-jig my diet to a low carb, no gluten, sugar or dairy, low inflammatory. 

I know it’s upsetting and annoying. I would have told them that they were being unkind and rude that Its not my wish to be unwell and if they were in my shoes they would feel differently. Illnesses can affect anyone at any time and maybe one day they will have health problems. 

You sound pretty similar to me. I was originally diagnosed with ME many years ago and decades later the actual diagnosis was Ehlers Danlos, POTS, autonomic and peripheral neuropathy. I also have mast cell issues. 

I was just told to take 10gs per day and 3.5litres of fluids. I was told to drink a mix of fluids so I drink soup, water and herb teas. I couldn’t take that much salt as it would have made me so sick so just sprinkled in my food and that was it. 

Sadly that’s the nature of the beast. I know it gets worse with stress, fatigue, Illnesses, vaccinations, foods, meds and pain etc. Each day can be different and sometimes the symptoms can plateau, worsen or lessen over time. 

I'm 61 now and my symptoms have now worsened after surgery and the first Pfizer jab. 

Yes, I see that a lot on my reports. It usually means nothing to concern or worry about. 

If you have Mast Cell Activation/Histamine Intolerance then antibiotics can often help with the symptoms. I think Yasmina Ykelenstam mentioned them also acting as anti-inflammatories. 

I've had problems with overheating since 1984 and it's gotten worse over time. I cannot tolerate heat and also as I have neuropathy the cold makes my limbs freeze. This is odd when my torso and head overheat and my limbs freeze. My hands and feet burn and freeze. It's all so much worse since the pituitary tumour and taking hydrocortisone. I can run a temperature and also have low temperature at times. I can feel feverish and shiver a lot.