These posts made me cry- I left work early today because I felt so terrible and out of desperation turned to the internet. It was so nice to read all your posts and finally feel like I'm not crazy. I have had POTS for almost a year now (well, had it longer, but diagnosed for a year. I am so frustrated by the unpredictablity of it! How can I take the same meds each day and feel so different? I think my cardiologist is losing patience with me. I am on midodrine (which makes me feel like I cant take a full breath) and pindolol. Every day is different- sometimes the dose of Pindolol drops my heart rate into the 30s so I have to stop taking it while other days (like today) my heart rate is over 160 on it.
Here's my biggest issue I am facing: I feel horrible in heat (new realization) and I leave in 5 weeks to lead a mission trip in Mexico. The temps will be about 120 degrees and there is no air conditioning. Theres no way I can get out of this trip - I am leading it. Do any of you have any techniques that work with heat? Do you up your meds? Meds are such a catch-22 because if I have them high enough to work while standing I get into trouble sitting or lying down. At least I feel like I'm not so alone in this now. Thank you for sharing your experiences here- I really appreciate it!

Thanks Rosie! I will ask my Dr. about the catachol. and the sleep studies- definately two things not tried yet!

Hi zeph,

Welcome. No real suggestions for you except that you can buy body cooling vests. I'm brain foggy at the moment but I think they might be called Arctic Vests. Damn this brain fog. I've had one on hold for so long at a store that it's now winter in Australia and I don't need it now. I will however have one before the weather gets warmer again as people on this site have testified to how much they help cool the body.

post the question on how to deal with the heat and enquiries about the cooling vest to the general dysautonomia forum and you sould get some informative responses.

Oh, and I have a new attitude. If I feel a doctor is getting impatient with me, I tell them exactly how I'm feeling. Very often something else is going on in their lives and we think it's about us when it's about them. Sometimes, though, we do come across impatient docs (I have) and when I'm sure that it's them being impatient and not me misreading them, I find another doc. If we choose to have medical care we need to trust in our docs.

Having said that about docs, I haven't received much help from specialists and am now just working with my general practicioner.

Dear Zeph3.17
I am told that getting very weak and sometimes even collapsing with heat, is a major sign of of a type Dysautonomis. If you cannot find a cooling vest befor you leave, ALWAYS wear a scarph filled with ice cubes or an ice water container around your neck. I too am desperate to find a cooling vest. If you get any info on one would you please pass it along to me? Thank You and Best wishes on your trip.
Of Course the best thing would be to not go on the trip but you sound committed, that is why I wrote about the neck wrap, at least that is better than nothing.

Hugs and welcome to this site and good luck. Guess this stuff is obvious but I'll say it... Stay hydrated with good beverages, not sugary sodas but the electrolyte drinks and water. And if you can fill bottles with a lot of ice and not much water, so in a little while you aren't left with warm water but it's cold water.

Thanks for the advice- I am doing SO much better by just changing a few things- hydration being one of them. After reading some of the "tips" here I got a 1L water bottle and just fill it 4 times a day. One of the articles suggested that a quick 16oz will slow your heart rate when its not really possible to sit- and it does! I also am trying (yet another) beta blocker- Toporol- that seems to be working much better than previous ones- my heart rate is still really low (in the 30's) for a portion of the day if I am seated, and I'm on such a low dose---I think I must be really sensitive to meds- but other than that I'm feeling MUCH better! Thanks for all your help!

What dose of Toprol are you on? The lowest dose they make is 25mg but most of us that are sensitive to medications can half that and take 12.5mg. I was on that dose for years and the heart rate didn't drop so bad.

This is link for the vest that we are purchasing for my son...I hope this can help you in your search. It is pricey, but all of them are around that price. Hope it helps with all the other advice others have given you. Keep in touch with us if you can.

Take care,

Judi


http://store.coolvest.com/merchant2/merchant.mvc?Screen...A&Category_Code=RCVC

The water thing is amazing. For years I have carried around a bottle of water (long before it was fashionable) which I'd fill and refill all day long.

When I start to feel heavy and like I'm fighting gravity I start guzzling water like it's going out of style and can get through nearly two litres of it very quickly. I found out recently that the need to guzzle the water like that was actually very effective -- it raises blood pressure. Seems like the body often knows what it needs. And it this case, with me, it does. Just wish my body would behave itself the rest of the time.

Just wanted to let all of you know that i am back from MX and it went GREAT! It was hot- around 120 degrees during the day and I didn't have even one spell (not even any brain-fog) I drank gallons of water and took salt tabs plus my meds-- no cooling vest b/c I didn't have the $ for one- but did really well. I felt better than I have in like a year which is SO crazy that I am just going to call it a miracle and give God the credit I had so many people praying for me those 2 weeks and there is just no other reason that I would do BETTER in all that heat than I do here... by the end of the week I just threw my hands up and went out and played volleyball with the kids
Thank you for all your support here. I continue to read your letters and I have learned so much about how to change my lifestyle to live with this Thanks thanks thanks!!!!!! z-