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Hi Jake, welcome to DINET! We're practically neighbors as I'm in the Netherlands! I'm glad you found a regiment that works for you, and thanks for sharing.  Hope someone will benefit from your experiences!

Jemima, Naomi isn't around much anymore as far as I know. She's not in the UK

Hi Sam123, welcome to DINET! Considering the numbers it seems to me this could be POTS. Perhaps this brochure could be helpful. You could print it or have it sent to a doctor of your choice

www.dinet.org/physician-brochures 

Hope this helps!

Edited to add: for some reason the link doesn't work, hope you will be able to find it!

I had very early menopause and can't actually remember how it felt or whether is was different. You can get your blood checked to find out if you're menopausal. For me I was in my early 30's and was lucky my gyn wanted to go ahead with treatment so that we we could have another child, we were só grateful! Hormone wise I was on the edge of not having anymore periods when things got back to normal (not menopausal) which was really odd (my doc couldn't believe his eyes when he saw the lab results) but after a few more years menopause was definite.  We think this is/was related to my dysautonomia. Hope this helps!

Regarding to your heart rate rising upon standing, it does seem like POTS. You may want to see a doctor from our physician's list to get more answers!

Here's a link to our list:  https://www.dinet.org/physicians/

Welcome everyone, glad you found us!

Sending good thoughts and hope things will go smoothly. I've been having hernia repair surgery 4 years ago and came out quite bad (dys wise). Fortunately upping octreotide got me back on track. I'm not at the point I was pre-surgery but quite happy to be back on my feet again!

Welcome everyone!

Hi VAlady85, as you are answering an older post (over a year) I'd suggest to contact agragory757 via personal message

Hi Ashleigh, welcome to DINET! It may be an adjustment period but I'd advice to always contact your doctor when in doubt!

I'm not in the USA so do not have any idea where Charlotte is but have you checked our physician's list? Here's a link:

www.dinet.org/physicians

Hope your sister will find answers, it must be awful for her to be so ill  after giving birth.

I agree with the others on getting more data. Also, for me mestinon works wonders on keeping my temp up. You may want to ask your doctor about this. 

Welcome everyone!!!

Hi, what works best for me is lying down for some time (say half an hour), get back up and see if it stays normal, if not I lie down again. I repeat that until my resting hr is back to normal. Hope this helps!

I don't know how much you are taking but I researched on what could be taken at most some years ago (when I was increasing the dosage to find out what works best for me) and was surprised to find out how much you could take before getting in trouble. I can't remember the specific dosage but I guess that you feel whenever it's more than you're used to. I remember increasing always brought back the side effects for a few days. Of course whenever you think you've taken too much it's best to call your doc!

Welcome everyone!

Hi Jim67, welcome to DINET! I'm sorry you are experiencing this. Have you been able to see an autonomic specialist? I've been having periods of not sweating in the past (I think up to several years) but things came back to normal. Not sure why but it sure makes my life easier. Not being able to sweat can be quite dangerous I've been told. Hope you will find some answers.

I've been having the swallowing problems on and off. They have been pretty bad up till a moment I was in a restaurant having lunch, starting to cough and really thought that was it. Fortunately I got through but I do understand the scariness! I agree it may be an idea to get things checked out but MSA is quite uncommon fortunately!

I started off with a cardiologist who recognized POTS and was send to a neurologist who did a TTT and other tests and diagnosed me officially. The neuro is my primair specialist but depending on the problem I see other specialist (endo, intern, cardio). Hope this helps!

So sorry you are experiencing these problems. I hope your doctor will come back to you soon, if not you may want to try call again in case you are really worried/scared. Sending good thoughts!

Welcome everyone!!!

I use salt tablets when needed. I can't take them in the evening though as I start getting excessive saliva and start throwing up.

Earthing (sheets) has (have) been discussed before. In case you want to read just type in Earthing in the search box (top right under username) and topics on it will come up

Welcome everyone! 

Welcome!

I'm not sure where you are located but here's a link to DINET's physician's list, perhaps there's one you hadn't heard of!

https://www.dinet.org/physicians/