corina

I agree with the others, I would be scared too! Do know that we highly appreciate you volunteering at our forums! You do make a difference! Take care!

I hear you Becia, on everything you wrote. I hope and I know from experience, in time you will feel better, tears will dry and you will be able to make new plans. I so hope you will be back home soon being able to do the things you love most. Warm wishes

For me it works best to put them on the moment I get out of bed when my legs are "thin" and dry. If I'd wait a few hours they will get warm, swollen and clammy which makes it more difficult. Special devices make it more easy to help put them on. Good luck!

Good luck in finding a good doctor Roxy! I have heard from other members that cooling vests can be really helpful. I was in Las Vegas several years ago and boy it was HOT!!! This is what I copied and pasted for you from our "What Helps"section (to be found on our main website): Cooling devices can help POTS patients. Cool Sport* sells personal body cooling vests that may help patients tolerate hot environments.

I'm doing bad with high altitude also, you know when you have a plastic bottle halfway filled with water? And it shrinks? That's how I feel when I travel over 800 meters. Like Bigskyfam I need to ly down in the car, feet up and wait until we're beneath 800 metrs again. I live below sea level

For me I can be as low as in low 30's (during the night) but it doesnt concern my cardio. If ever you feel uncomfortable you'd best ask your doctor!

Happy for you Ancy!

Sending good thoughts your way DizzyGirls, it seems you're on the right track! Best of luck reading the article and tying up loose ends!

Glad to hear you're feeling better Ancy! Now onwards and upwards! (after resting up and recuperating from all this of course!)

Hi cemp, welcome to the forum. I'm sorry your doctor ist not very cooperative thinking your problems are psychological. I think it would be very worthwhile to ask for the TTT or (perhaps even better) a second opinion. In London is Dr Mathias (not sure if he's still taking on patients) and his specialized clinic so if you are able to travel there that might be the best place for you to go. I have checked our Physician's list for you but we have no one listed in Ireland (which doesn't mean there aren't any of course!). Hope you will find answers!

That is SO sweet Draven!

I was told so Draven, unfortunately, for me it doesn't work like that. Other problems have popped up like blood sugar issues and my cognitive skills are getting worse (Alzheimer's has been ruled out). Do remember we are all different, so this doesn't need to go for you!

Sending good thoughts Ancy!

Welcome everyone!!!

Cognitive impairment makes me feel so sad, I so miss the old me! I think I can deal with physical limitations better than the cognitive problems. It often leaves me feel "stupid" which I find quite hard. Over the years I've had about three neuro cognitive tests (to compare) and the outcome is that I'm getting worse. I refused when they wanted to do another one a few years back, I know the outcome, no need to add the stress and bad feelings re this to my life!

I'm so sorry Ancy! Hope approval wil come through soon!

Sending good thoughts your way Ancy! I'm very hopeful the pacemaker will help you back on your feet again!

I haven't tried one myself but noticed lots of people carrying them. It seems a great idea!

Sounds really good, glad you have found yourself a great Dr Dancer!

I start my day drinking a large glass of water (salted if needed), which helps me stay up to make breakfast. After I finish breakfast my meds (octreotide) are ready to inject and keep me going for about 3 to 4 hours!

Welcome everyone!

Seems like a great doctor! I hope things will work out just as he thinks and once the concussion heals the brady will heal too! Sending good thoughts Ancy!

Hi everyone! As I'm sure you all have noticed we've had a forum ugrade last week. I think the new forum looks really nice though it gave us quite a few struggles as well! Most of the problems are in control now, there is still some work left but do know that our volunteers are working really hard to get things fixed! Other than that we have made a few additions to our rules (which can be find under Guidelines on top of the forum and in the pinned section in Dysautonomia Discussion). One of the most important new rules is the following: Links to commercial websites or websites that otherwise contain advertisement are prohibited. We are aware this is quite a change! Inserting links has been an easy way to help others find (important) information. As DINET doesn't allow solicitation it's been difficult at times for us to decide what could stay and what not. For some years we decided that what would be helpful to most members could stay, ie links to sites that sell compression stuff etc. Links to blogs that gave information on commonly used diets were okay too. Fact is that those websites/blogs contain lots of advertisement which can't be considered to be "useful information" for our members. So together with the Board we decided it best to be consistent and came up with this new rule. Of course you are allowed to mention which brand you use re compression garments, supplements etc (as in: "I use x" or "For me y works best") etc! There are a few more new rules that we needed to add/change. You can read them here: We really hope you'll understand that the rules aren't made to nag; they are necessary to keep DINET a safe place for everyone to enjoy. Where other forums have burned down, I'm very proud our forums are still up and running and helpful to everyone who is in need of help, a listening ear, understanding and words of encouragement! Happy reading (if you have any questions please let us know!) and hope you'll enjoy our new forum lay-out! On behalf of our moderator's and admin's team Corina

I'm so sorry Ancy. I think you're passing out due to brady. My doc told me that when I get to this point we will talk seriously about getting a pacemaker. I hope you can be seen by your doctor asap and that s/he will be able to figure things out and come up with a treatment plan. Warm wishes, Corina

Josh, I'm so sorry you are feeling so bad. I have trouble carrying stuff let alone up stairs! Like Macca mentions POTS symptoms can be very scary. Do know though that POTS in itself is not life threathening. My cardio told me that eventhough my heart may be running wild, it is healthy and there are no riscs of me getting a heart attaque or dying from it. I found it reassuring and told myself to stop worrying about it. That was easier said than done but it did help me to just take his word for it and move on. Talking to a psychologist can help you deal with the scary symptoms but may also help you in relation to your family's attitude to you being sick. Have you ever shown them the "Changes"video? That may be helpful as well! Sending good thoughts your way Josh!