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Firstly, please DO NOT PANIC! Stress will make it far worse, as I found out to my cost. I feel your pain and I KNOW what you are going through. I had all of this happen to me 9 years ago and I went to ER (A&E in UK) 7 times and admitted twice. The doctors were clueless at the time. I have since been diagnosed with EDS 3, POTS, Neuropathy (I am guessing Small Fibre, but the Neurologists do not want it investigated). I also have strong signs for Mast Cell Activation and I am in the process of getting that sorted. Knowing what I know now, I would say you have Mast Cell Activation. I wish I knew years ago that when I had Glandular Fever in 1984, (plus an operation and miscarriage), that this was causing most of my symptoms which got worse and worse. I now follow a lifelong eating plan with supplements to help with the condition and I am starting to feel much better. Message me if you want any details and help. Don't worry, as it will improve.

I've read that if you have Mast Cell Activation issues with POTS, then taking antibiotics will improve the histamine problem, which could be at the root of all of the issues.

I personally find that once I am in bed, I try to relax my whole body and have some lavender essence at hand should I need it. If I wake up, I go straight into meditation mode and that stops me from mulling things over. Relaxation is key. I know if something is troubling me then it means my sleep will be fitful. I do go through phases of using wax earplugs, that's if my sleep is shallow and I'm easily being disturbed. Some people like to read and sometimes it helps me as my eyes get droopier quicker. I hope you can find something that helps.

I have severe head and eye issues, but in my case they have improved with massive changes to my diet and eating low histamine, low inflammatory foods. I have read a lot about these head and eye issues and I would suggest you read up a bit about Dr Diana Driscoll who has EDS and did have POTS. She has looked into the head and vagus nerve issues extensively.

Hi Bren I am sorry to here you have been having problems. I have EDS and it's known that there are issues with organs. I had terrible periods over the years. I had an ovarian cyst that was about to rupture and my ovary was scraped that left a lot of adhesions. I continued to have problems and eventually at 38 I had a hysterectomy and the damaged ovary removed. I went onto oestrogen patches. All of my symptoms made my illness worse and even years later I have cyclic breast pain and more discomfort and gut upsets. I read my medical records from years ago and apparently I had endometriosis and no one told me. When I had the cyst I felt really ill. I am also prone to breast lumps. I hope you can get some help and support to feel better. Trish

Hi joshrandall I'm not sure about the coconut oil pulling. I haven't tried that but do use coconut oil. Maybe it was too rich? I was on a diet similar to Ella's and when I discovered her it helped with knowing what to have and enhanced my recipes. I dropped gluten, already vegan, no sugar or processed and low carbs. Didn't feel much different and still had gut issues. Then cottoned onto the fact that I may have Mast Cell Activation and or histamine intolerance and have followed Yasmina's dietary advice since. My gut is a lot calmer and that helps no end as I feel less yucky. My weight is also coming down which helps as I put on a lot of weight. All the best Trish

An hour on the recumbent and then working on core.

Yes, when the POTS and neuropathy came on ridges and splits came. I also noticed that my nails were starting to flatten at the ends. It seems people with EDS get this too and I have EDS.

Hi Nymph I was originally prescribed some salt tablets via my cardio (I'm in UK), but my GP never mentioned it. I was upping my salt intake in food. Some people eat salty snacks. I found no difference to be honest when taking a fair amount. I think if you need salt it is probably better to try the more natural forms anyway. Now I am on the MCAS, very clean and healthy diet, I occasionally use pink Himalayan salt.

I've had nausea every day for around ten years now. All gut/autonomic related. I have slow motility 'gastroparesis'. Gut has greatly improved on low histamine diet. I'm not so constipated and the nausea not so intense.

Give it a bit longer and see how you feel. I haven't tried this drug yet, but sometimes there may be a little shuffling around of meds until you find one that helps. I've been on Propranolol and Now Ivabradine. I wouldn't say that I have improved on either, so I'll see what the doctor suggests next month when I see him.

Hi I have been exercising for well over a year now and I built up from lower leg exercise and then incorporated other exercises in order to focus on the core. All was going well with the exercises although it hasn't made me feel dramatically better, as yet, and I've not been able to live my life any more normally in any sense (I have been pretty disabled). Lately my knee joints are getting more and more uncomfortable with gurgling and grinding and my spine (longstanding spinal issues) is causing me more discomfort. I guess it is to do with EDS and I'm being careful not to over-stretch my joint or stress myself too much. The neuropathic pain also intensifies after exercise. Has anyone else found problems like this? I'm doing as I am being advised and I don't want to give up now.

My cardiologist (area of interest is POTS) says to keep building up and lower leg was the best start and then work on the core as that was vital. I personally have to be careful as I have EDS and neuropathy, plus spine problems, so have to be very cautious and not to do any high impact. My heart beats too fast anyway and any exercise makes my heart go nuts. Go with what you can cope with and listen to your body.

I agree it must be very gradual from floor exercises and recumbent bike. No high impact, all low. Need to build up and not overwork the heart.

I am also borderline glaucoma. My pressures go up and down.

Stress will make you feel more unwell and if too bad bring on a relapse. For me, this is where meditation has really helped calm my mind. I'm sorry you are going through a bad patch, but things will get better. I can barely remember over the years all the times I have stressed over life's events and made myself very ill. I work at stopping myself from getting that bad. Even listening to some relaxation music, lying down and concentrating on your breathing can help wonders. Take care.

Do you sit down a lot with your feet on the floor?

I believe EBV which gave me glandular fever activated the mast cells in 1984 and resulted in ME-type symptoms (autonomic dysfunction). Nine years ago I had a relapse and the more severe symptoms came on including POTS and neuropathic pain.

I had problems for years, but now I'm on a healthy clean diet, with no nasty foods, I have improved 100%. I have no yeasts, sugars or inflammatory foods in my diet. All meals cooked from scratch with fresh organic veggies and all are low histamine and anti-inflammatory. I'm vegan, so no dairy and no gluten. I wash with a PH neutral feminine wash. Avoid harsh soaps and detergents.

I would say that in the 32 years of illness that I am exercise intolerant, however, it does depend on the type of exercise. I would not be able to tolerate walking, jogging and higher impact exercise, but can tolerate low impact exercises and it doesn't make me feel awful and in pain. I started with recumbent bike for a few minutes a day and built that up and then incorporated some work on my core muscles. I don't overdo any of it. I work at about an hour a day. Recumbent/supine exercises are a help. As I have EDS and neuropathic pain, I have to be careful not to make nerve inflammation worse or overstretch ligaments. Taking it steady is vital.

Hi cmp37 Firstly let me say how sorry I am to hear your story. Secondly it has many similarities with mine. Your symptoms are not psychological. I have EDS only diagnosed a few years ago and I'm in my fifties. I had ME diagnosed 8 years after contracting glandular fever in 1984. I had POTS diagnosed last year. I also have widespread neuropathic pain. I believe I also have Mast Cell Activation Disorder caused by the glandular fever and that brought on autonomic dysfunction or the ME symptoms. My EDS symptoms weren't very apparent with just a few dislocations before 1984. No one else has it in my family and only IBS being a familial link. I see a cardio who is experienced in POTS and I take a low dose of Ivabradine. He set me drinking 3.5L of fluid a day. I also exercise starting with lower leg building and also the core area. A rheumatologist diagnosed EDS but only offered physio. You don't have to dislocate to get diagnosed. Have you checked out the Beighton Scale? The Neurologists were all clueless about anything and refused to help with the neuropathy. I take Gabapentin and Nortriptyline for the pain. For MCAS I take supplements, low histamine/anti-inflammatory foods and it is helping me a lot. I follow Yasmina Ykelenstam on her website as she has had many of my symptoms. I have had multiple issues with foods and meds and that's been a strong indicator for MCAS. I hope you can find someone to help you and you're already clued up about a lot of it. To be honest, I've had to do more for myself than anything as doctor's can only do so much. Diagnoses are important and if treatment is offered then take it. I've found being proactive is the best thing. Good luck!

Some people get white spots on their vision. I didn't, but it did upset my gut, so remain at a very low dose 2.5mg per day.

MCAS and POTS. I get very itchy are eating. I have had to change my diet so much in the past year. I will get there. Avoid high histamine foods.

The only things that I have read recently is the role of the vagus nerve in autonomic dysfunction and also intracranial pressure.

Yes, I get the vibratory feeling. Feels like circulation and nerves. Weird.