TCP

You've actually described Small Fibre Neuropathy which is present in people with Autonomic Dysfunction, Ehlers-Danlos, POTS etc. There is small fibre loss and it affects the organs and skin. There's a lot of information about this online and many research studies. 

I can't lie on my left side as it makes me feel very unwell, plus I have pelvic adhesions that side and a bent spine. 

Yes lying on the left side shifts stomach gas and moves bowel movements along. 

Congrats on the baby x

I've had this for years and now have smaller meals and cut out sugary foods and reduced carbs. The gut makes the whole of the nervous system go haywire. I know I used to feel awful after eating. Smaller meals definitely and avoid gas generating foods. 

Hi!

Hi! I ordered mine off eBay and they were surprisingly good. I bought from proper medical supply companies or chemists. 

I hope you are feeling better now? I often have issues with blood test results and being slightly anaemic. I have put it down to my losing some blood in my urine as every time I have a urine test there are traces of blood in it. Also I am on Gabapentin and in the blurb it says that blood test results can be affected by taking it. 

I certainly don't think you are overreacting as there are signs that something is happening. I would arrange a specialist check-up as the sooner she is checked out the better. Don't leave it. Good luck! 

I get low iron and vitamin D. I am vegan so take sublingual vitamin B12 supplements. I have noted that many people seem to be low in these vitamins and minerals, especially those with health problems, including neurological ones. Plenty of friends diagnosed with MS, Fibro and ME/CFS have had low D, B12 and iron. Many people are deficient in magnesium, but most don't get any tests for that. It could be related to poor absorption or even Mast Cell/Histamine as that would interfere possibly. 

As regards D, many people who are sick don't go outside as much so maybe we need a healthy top-up with the sun? 

Hi Amyk

I get the whole bloating stuff, discomfort etc. I found cutting down on carbs and big meals helps no end. I also drink lots of fluids. I also re-jigged my diet and am no dairy, gluten, processed foods or sugars. I am vegan anyway but eating well. A lot of people with dysautonomia get bloating, gastroparesis and IBS. Nausea is a tough one and I get it every morning and it seems to improve when I have eaten a bit. I think I have the histamine/mast cell issues and that means a lot of food trigger problems. I have found Yasmina Ykelenstam and her website and Facebook page helps with the diet and eating well to keep well. 

I don't know if any of this helps, but it might be worth cutting out the carbs to begin with such as bread, pasta, potatoes etc. Good luck! 

Sorry to hijack!

Ah! You have EDS, too. I was healthy until Epstein Barr gave me glandular fever. I then got ill with autonomic problems and fatigue. Then I seemed to improve a lot, but 20 years later developed POTS and Small Fibre Neuropathy. I have Mast Cell issues, too. 

11 hours ago, yogini said:

This forum would tend to have people who are still sick, so I'm not sure it's an accurate representation of everyone with dysautonomia.  The studies show people who develop it in childhood do improve.  If you got it in your 20s that doesn't count as childhood.  I've had POTS for 14 years and became much better after 3-4 years.  I still get symptoms, am not climbing any mountains but can live a full life.  Many people get better enough to function and leave the forum.

I am pleased to hear that you have had some good improvement, but I've yet to hear of any adult being completely cured of POTS, even ones who are living very full lives. I have noted that Deliciously Ella (Ella Woodward (Mills)), who has worked hard on her lifestyle enough to run a successful company in the UK, still has relapses when she gets stressed, tired and hasn't had time to exercise. I think for most people it is down to good management. 

I had autonomic dysfunction after EBV in 1984, but the POTS symptoms appeared in 2007. I think some people can manage the symptoms through diet, exercise, relaxation and lifestyle changes but I haven't heard of anyone being fully cured without making the changes and maintaining them. Even then they still get flare-ups. 

My cardiologist says younger people respond better to meds, exercise, compressions stocking, raising the head of the bed, lots of fluids and salt etc. He said he finds less success with people with EDS and if you are older.

I have heard of the hormone link and now that I have a pituitary tumour, I am more aware of what hormones can do to the body. I get the idea of POTS coming on when hormones are raging during pregnancy and adolescence. Years ago when I was diagnosed with ME/CFS (now I know it is autonomic dysfunction/POTS, EDS and Mast Cell) I had heard of many women who had developed ME/CFS after pregnancy while others found they were well during pregnancy and it flared again after the birth of their child. Personally, for me, my hormones went haywire after the Epstein Barr Virus and I had all sorts of hormone-related issues. Now with the tumour I have three hormone-related meds to make up for deficiencies or excesses. 

I would certainly look into Ehlers-Danlos type 3 and Mast Cell Activation/Histamine Intolerance as there is a link and it's taken me over 50 years to find out the link. 

I've always believed it is because of the drop in the blood/oxygen flow for brain health. I have noted that people who have improved through diet, upping fluid intake and exercise say that their brain fog improved too. 

PS< I've had it since 1984 and I am still pretty bright and also the fog comes and goes. 

I tried Ivabradine and it upset my large bowel with niggle pain and cramps. I have ibs and gastroparesis. I'm now on beta-blocker Nebivolol and it's the first BB that hasn't upset me. 

I'm in the UK and see Dr Hayat at University Hospital Coventry and Warwickshire. He is a cardiologist and electrophysiologist. He is a good listener and very open and honest. He also doesn't have a closed mind. 

Yes, I feel awful when bathing/showering. I use a stool to sit on and have the water just warm. I try not to stay in too long. Before I get out I run the water lukewarm or even colder to get my temperature down. I then carefully get out and dry myself gently. Sometimes I lie down for 20 minutes until my heart and BP settle down. I often shower before bed and that gives my body a chance to rest and regulate. 

I currently have a pituitary tumour and I'm pondering the POTS/pituitary tumour link. 

I've had joint issues for years and I know now that I have Ehlers-Danlos type 3, neuropathic pain and mast cell issues. All of these cause joint pains. 

UPDATE

I have had more MRI's and field vision tests. I was put on Cabergoline last November as the endocrinologists say I have a macroprolactinoma. My prolactin levels were 3000 and three weeks after taking Cabergoline the levels came down to 11 which is normal. Unfortunately, the tumour hasn't shrunk, which can happen in cystic types and my field vision test showed some defects, this means I will most probably have surgery. My greatest concerns are because of my underlying health issues, the 20% - 50% chance of tumour recurrence and the recovery.  I may also develop diabetes insipidus. I will talk to the neurosurgeon next month. 

I diagnosed myself with EDS and POTS ahead of a rheumatologist and cardiologist confirmed later on. I'm guessing there isn't a genetic marker for EDS type III and so diagnosis is based on clinical signs and patient history. I asked my GP for referrals and she referred straight away.  The rheumatologist went through the whole of the Beighton Score and checked all of my joints and I gave her a full history of my life and health issues. I scored 7/9 hich is high for someone my age. She recommended physiotherapy which I wasn't able to do because the POTS hadn't been treated at that time. I only saw the rheumatologist once. I also have IBS, gastroparesis, scoliosis, mast cell/histamine issues and whole body neuropathic pain. 

My cardiologist says he doesn't get such good results with patients who also have EDS. I am currently taking Nebivolol. I was going to see an immunologist about mast cell issues/histamine intolerance, but I now have a pituitary tumour and that has put the kibosh on things. 

Obviously EDS is for life and POTS seems to go hand in hand with it. My sister has some symptoms of EDS and some autonomic dysfunction. Three generations of the family have IBS which seems to be the link. 

The only people I have spoken to that seem to improve have overhauled their diet and exercised, which means strong core work to help balance the autonomic nervous system. I am hoping yoga will help once my pituitary surgery is done and dusted. 

I wish you well. 

On 31/01/2018 at 1:26 AM, Jessica_ said:

@TCP Wow how scary! Do they think your tumor was the cause of your autonomic issues? Did you have it removed? 

Hi Jessica

No, I won't have surgery and am on meds that might shrink it. Surgery would be last option. I've no idea if the tumour caused POTS, although there are people who have found a link. 

I have secondary adrenal insufficiency and some websites about Adrenals/Addisons/Adrenal Crisis mention adrenal fatigue.

Initially my cardio wanted me to do cardiovascular exercises. I wasn't so sure about this as I am pretty unwell and I've never really exercised. I started on the recumbent bike a few minutes a day and built up to an hour a day. My cardio wanted me to step it up, but as I didn't feel too well and the neuropathy and joint issues got worse. Then I found out I had a pituitary tumour and that has messed with my cortisol levels, so I cannot do any rigorous exercise. Now I do gentle stretching and I am trying to work on my core, as that is key to success with autonomic issues. I can do this without too much exertion. ~
 

I'm sorry to hear about your daughter.I have heard about seizures with Chiari that is linked to EDS and POTS. I found this: https://www.epilepsydiagnosis.org/epilepsy-imitators.html

17 hours ago, Missy M said:

I’m not at all saying that seeing a neurologist may not be helpful. It may prove VERY helpful!

I’m only adding that, in my case, it was an electrophysiology cardiologist who was the specialist that ID’d my issues as dysautonomia and confirmed his diagnosis with appropriate medical tests.

So electrophysiology cardiologists (a type of specialty cardiologist) can also be helpful. They earn extra certifications in how the nervous system impacts the cardiovascular system. Most electrophysiology cardiologists will list this specialty in their listing on their clinic websites since they have to go to so much extra trouble to earn that certification. 

I totally agree, as neurologists were pretty useless in my diagnoses. They either saw the problem as not in their field of expertise, i.e. cardiology or wanted to send me to the pain clinic. 

As above reply. That's what I thought. Check out Dr Diana Driscoll as she has fully researched this area.