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If I get up fast my vision goes black and I fall and sometimes I can walk a few metres and then I go dizzy and start to go. It really depends on many factors. 

I take a probiotic daily. I think it helps my gut. It took about 3 months to notice any difference. 

I am one of the oldies that checks into this forum. I have EDS 3, POTS, MCAD, scoliosis, cervical stenosis, neuropathy, secondary adrenal and thyroid deficiencies, IBS, gastroparesis and lots of other issues. I have increasing pain in and around my dowager's hump on my upper back. I am deteriorating fast, with worsening nausea and weakness (especially in my arms and hands), POTS worse/autonmic dysfunction, and my gut (bowel) is being affected, too. I am hoping to see my GP tomorrow to get re-referred to the rheumatologist. Has anyone else had similar issues? Thanks in advance

She sounds like a complete a*******! I would have been livid with her dismissive attitude and tone. She doesn't know what to do to help so is fobbing you off. She's not helpful or the right person to have around you as she clearly is on another planet! I would put in a complaint if possible, but if not you are well shot of her. 

That is low and you need to tell your doctor. I went completely off my legs in 2007 when it got as low as 65/32 the hospital ignored it until I saw the neuro who said that should have raised alarm bells. Keeping hydrated helps 

I can't bend over as I get weak and lightheaded. I fall sometimes. I avoid it at all costs.

I totally get this and understand your hurt, anger and frustration. Educate them the best way that you can and show them the test results and doctor reports. I print off things on the internet, too, if I want to explain certain things. I tell them about The Spoon Theory, too, as that may give people an idea of having to choose what you do and what you cannot do. Some people will remain blinkered and deaf to your words and that is their problem, as they cannot hack you being ill and their ignorance means they aren't interested to learn. They are doing a great disservice to you by speaking and behaving in an inappropriate way towards you and if it comes from a close friend or family member it can be very hurtful. I have had to give up on many people who did not get it because they chose not to. I got the whole, 'get out and meet people', 'some fresh air will do you good, 'take up sport', 'a positive attitude would help' etc. I told them that they lack medical knowledge and I questioned what they really thought of me if they chose to disbelieve the problems that I am facing on a daily basis. I find only a few family members get me and only friends with similar problems, too. I have numerous health problems and combined they can be very hard to live with and because I am overweight from steroids and immobility, and look robust (I'm not), people think that I am fine. 

I would be very upset if my mum said that to me and I would tell her that I am disgusted that she would think that.  I got a wheelchair and I am glad that I did. Don't let her words stop you from getting one. I wish you well and don't let the dissenters get to you. 

PS I now have Secondary Adrenal Insufficiency and that can be life threatening and it's amazing that many people, including the medical profession, play that down as being nothing. 

I only take it in food or it makes me feel sick. I use pink Himalayan salt. 

I have really vivid dreams and nightmares and this has happened since I got Autonomic Dysfunction/POTS. I wake up clenched up, feeling dizzy and sweating. 

I use Nortriptyline which is less sedative than Amitriptyline. 

I have neuropathy and compression tights or socks do hurt especially if on for some time. I had to wear thigh high after an op recently and I actually found them ok after a day wearing them. I think my body got used to them. I found this surprising and reassuring after trying different kinds quite a few times over the years. 

I use a cooling vest in the heat of Summer and keep the extra ice packs in the freezer so I have a constant supply. 

Changing my diet has been the biggest help with low carbs, vegan, no gluten or sugar or fruit.  I eat low histamine foods and alkaline. 

Prof. Qasim Aziz is a professor of neurogastroenterology at Barts and The London School of Medicine and Dentistry, and specialists in disorders of gut function. I researched some years ago and I would have gone to see this man but realised in my case it is Mast Cell Activation/IBS and I am seeing an immunologist next month. 

Hi. I have autonomic dysfunction, EDS, POTS, Small Fibre Neuropathy and mast cell issues. TTT twice and conclusive POTS. I'm on Nebivolol for tachycardia. Diagnosed late in life. I don't black out too much now. Have constant nausea, dizziness etc. 

I've had this for years. My left pupil is always larger. It got worse when I took Cymbalta. 

I have a tight chest all of the time and struggle to breathe sometimes. About five years ago tests showed that my lung volume had decreased. It doesn't help that I have large heavy boobs! 

I have a macroprolactinoma, a tumour on my pituitary gland. They are mostly benign. Wonder if that is what you have? I had most of mine removed last year. If you need any info just message me. They should be able to tell you what it is. I see a team consisting of Neurosurgeon and Endocrinologists. I've been seeing them for two years now. 

https://www.dinet.org/forums/topic/13852-albumin-as-a-potential-biomarker-of-potsoi/

How long have you had POTS ?

I think signs of autonomic dysfunction came on after the Epstein Barr Virus back in 1984. I was wrongly diagnosed with ME/CFS 8 years later. Symptoms remained there and changed little until 2007 and then POTS came on with a vengeance along with Small Fibre Neuropathy (now linked to Ehlers-Danlos that I didn't know I had).

Has the symptoms got better since you 1st got POTS as time went by? 

They've changed and I've got used to them. I am also on Nebivolol now and my HR is lower. I think it helps. The problems with pain, digestive issues, and allergies are the most problematic. 

How much are you able to do? (Drive, stand, walk, shop, get out and about) ?

I can walk short distances. I mostly sit with my legs elevated. I don't drive anyway but go out mainly to hospital appointments. I also have Mast Cell issues and pituitary problems and I am on hormone replacement (hydrocostisone, thyroxine and HRT).  

What are your Pulse and BP readings?

They vary but HR is lower now on meds. 

That's how mine go.

I tried Propranolol and Ivabradine. Not great. I'm on Nebivolol lowest dose really helps. 

Hi. Mitral valve issues can be linked to Ehlers-Danlos, which in turn is linked to POTS. I know of lots of people with POTS who get seizures, too. I get the shakes and temors a lot. When they flared up I was hospitalised several times. I hope you can get some help soon. 

Adrenaline surges sounds like it to me. Very common with POTS and they can happen at night. Mine came on worse if I'd been overdoing it and if I was overtired, stressed or anxious.

I have neuropathy all over and I also get a tingling and then numbness on my left side. It feels weird. I have mentioned it to doctors over in the UK but no one seems interested. It happens to me when I am sitting or lying down. I have no idea what causes it.