1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Cooling vest???

Discussion in 'Lifestyle Management' started by Sacajawea, Jun 3, 2010.

  1. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    this is really interesting, i may look into it - not for myself but for my father who really has trouble tolerating the heat.
    thanks!

    so, do we know why we have heat intolerance just like people with MS?
    can one of the sciency people answer that for me?
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,269
    Likes:
    6,330
    Albuquerque
    Yes, many of us have heat intolerance--particularly if you have a lot of autonomic dysfunction. Often intolerance of cold and heat go together--this is not very scientific but it is like we have a reduced zone of temperatures that we can tolerate. Our thermostats can be dysregulated as part of brain dysfunction. Heat intolerance also goes with orthostatic intolerance--at least in my experience.

    My autonomic specialist got all his patients handicapped parking permits--both to allow us to park close to stores and thus not have to carry things far, and to minimize our exposure to heat.

    Sushi
     
  3. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    ok, autonomic specialist - that is new to me. but the part about our inner thermostat being messed up just like everything else makes sense. thanks!
     
  4. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    Where is the Dinet forum? Never heard of it

    I know what you mean about extra weight, but for me the pros will far outweigh that if I can find one that is a material that won't bother me....oh and the arctic heat ones weigh less
     
  5. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    Yeah, I am in the midwest, near Chicago....very humid

    I didn't see a ph number, but I can be very unobservant when foggy, so it wouldn't surprise me to find I missed a ph number.....I do start to get a little leery though if their customer service is so lacking online.....worry about problems if I need to return it (had bad experiences with T-shirt company and that was substantially cheaper - really cannot afford to waste the money for a vest.....still if I can find a ph number I will try calling them)

    as to the material, I am wondering if it is anything like smartwool (they call the vest material sportwool).....smartwool is used in socks and some athletic appareal and I can deal with it in the socks if I put another pair under them and only wear them while I am outside if it is really cold.....otherwsie they still bother me a lot & I cannot wear that stuff anywhere else on my body......wool gives me hives

    I actually like the idea of the velcro parts bc I think it might be a bit more adjustable

    anyway, thanks for getting back to me......besides the passing out and other increased symptoms with the heat, I actually almost died from heat stroke a couple of yrs back, so I really, really, really want/need to get a vest
     
  6. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    sushi, is the band thing the same material?
     
  7. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    Thanks, I book marked it to look at tomorrow.....had not seen this site before
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,269
    Likes:
    6,330
    Albuquerque
    Yes, it is...and I am also allergic to wool and this material doesn't bother me at all.

    Sushi
     
  9. kerrilyn

    kerrilyn Senior Member

    Messages:
    246
    Likes:
    2
    The Dysautonomia Information Network http://www.dinet.org/ Lots of info about POTS. The links along the left side, under the support category, there is one for the forum link.

    Thanks Sushi, I missed that those vests are lighter.
     
  10. belladonna

    belladonna

    Messages:
    23
    Likes:
    1
    D/FW TX
    I have been using kafka's cool ties when I go out of the house.

    I usually keep several frozen and one in the fridge.

    When I go out, I wear the fridge-one, and put the frozen-ones in a small cooler with an assortment of cold drinks. They keep the drinks cold as they thaw and soften. I'll usually leave one frozen one out of the cooler so it will be ready-to-wear about the time the fridge-one is getting warmish, and by the time it warms up, I can grab one of the others out of the cooler.

    I shopped for a vest, but as you said - the shaping is just never, ever going to work on someone built top-heavy like me, and the weight issues seemed a bit much. The cooling ties can be worn as a headband or scarf if I need to look "normal", but if I really get hot, I am not afraid to tuck them under my breasts, in my armpits and in other unmentionable areas ;-p They work a lot better when placed near the major arteries.

    The ones I bought came from an REI store, and there was no significant packaging or outgassing to deal with.
     
  11. Tammie

    Tammie Senior Member

    Messages:
    760
    Likes:
    10
    Woodridge, IL
    good to know belladonna.....thanks for the info
     
  12. Sacajawea

    Sacajawea slightly bedraggled

    Messages:
    50
    Likes:
    4
    Hi All, sorry it has taken me so long to get back to you. I went to a convention for one day two weeks ago and have been flat ever since. I did get the cooling vest in the new size. This time the bag it came in had VERY little odor, nothing compared to the first vinyl bag.

    I've used the vest only a few times, not being able to do much the last few weeks. I love it! At first it felt like a wet swimsuit next to my skin but now I'm used to it. I'm not thrilled about the size still-- they do a poor job in their sizing and certainly need to make a woman's vest available. I've only worn it out to quickly drive to the bank or once to a drive-thru but it was so hot out that normally I wouldn't have been able to do it that time of the day. It's very lightweight and comfortable enough.

    Tomorrow I may be going to a graduation party-- I will probably get a chance to test it out (not sure if it's indoor or outdoor). It keeps me cooler if I wear it under my shirt but I've done both-- if I were to stay outside I'd wear it under. I forgot I did wear it outside for about ten minutes last week or so when I had to inspect some work I had done to my home (repairing storm damage). I would love the hat or headband as well.

    Sushi, do you still use the original bag it came with? My bag, well, the zip thing broke off the other day and then today it ended up ripping when I tried to unseal it. I had such a bad experience with the customer service I don't know if I have it in me to complain right now.

    Any other questions, feel free to ask...I wish I could give more info but maybe if I do go tomorrow and it's outside I'll have something to report. My girls are on vacation w/ their grandparentsso when they get back I will be able to take them to the park or lake (right next to our house, few minutes in the car)--something I could never do before this time of the year by myself. Our park has a new water feature and they will love that and I can stay in my antigravity chair or scooter or van and enjoy watching them play!

    SJ
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,269
    Likes:
    6,330
    Albuquerque
    Hi Sacajawea,

    Glad you like your vest. Yes, the sizing is hard to get right. I finally took mine in at the sides (they said you could do that) so that it fits "skin tight." This means that for the first few minutes, when it is frozen solid, I can't zip it up all the way, but afterwards, when I zip it fully, it is a good close fit--which is important.

    My original bag also bit the dust and I just use a big zip lock. I do like the headband for really hot days. Also, when I go out I take a cooler bag with ice bricks and when the AC in the car has kicked in, I pop the vest into the cooler bag to extend its cooling time. And if I a out and visiting where there is a freezer and AC, I pop it back in the freezer to recharge it.

    You need to also soak it in water for about 3 minutes when you notice that it is drying out and the "ribs" aren't as plump--depending on how much you use it, maybe once every week or two. (but don't soak it too long as the gel can expand too much and strain the seams) Then put it through the spin cycle on your washer. This vest does allow me to do a lot of things I couldn't do before and it actually doesn't look too weird. I can take a walk or do a short bike ride or just be outside in the heat for a while--not possible before.

    Sushi
     
  14. Sacajawea

    Sacajawea slightly bedraggled

    Messages:
    50
    Likes:
    4
    Sushi and others...oh boy do I love my vest! When I first got it out of the freezer it refused to zip and I totally freaked out thinking I made a mistake but it's fine now. I was able to take it to the party and had a good time (can't remember if I wrote about that). I've worn it in the car a few times. I don't have working air cond. in my van. I need to get some ice packs to keep it cold. When I went to visit a friend the other day it was so hot there is NO WAY I could've made it w/o it...I wouldn't have tried. It doesn't feel cold to me but friends who've tried it on say it's feels cold to them (not sure why).

    I bought some bigger ziplock backs. So do you just keep it in the freezer until you need it? One day it was frozen onto itself (with the holey bag) and that was frustrating but hopefully with the new bags I won't have that problem. It keeps me from sweating by about 80%. I just love it. I still sweat a bit in the face but nothing like before. And it's been a HOT week!


    I had another question for you but it's slipped my mind for the moment.
     
  15. Sean

    Sean Senior Member

    Messages:
    1,307
    Likes:
    2,338
    It has been hot and humid here, and it is the middle of our tropical 'winter'! Breaking records all over the place. Feels like early summer. This coming summer is going to be a scorcher for us.

    I find I still sweat a bit using my denim jacket, it would be hard not to in the high humidity here in summer. But it keeps the body core temperature down nicely, which is the important thing.

    The jacket does need washing every 2-3 days, but that is a small price to pay. (I don't wear anything under it, just straight over bare skin. Might try it with a wet t-shirt underneath and see what happens. At the very least it will extend the time before it needs re-wetting.)
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,269
    Likes:
    6,330
    Albuquerque
    Sacajawea,

    When you keep it in the plastic bag in the freezer it doesn't freeze to itself much--but I usually take it out a few minutes before I use it and let it thaw a bit. Then, when I first put it on I can't zip it all the way until the "ribs" soften up but if it were bigger, it wouldn't hug the body the way it needs to.

    Yes, it really helps me too. And mine has lasted several years so far.

    Sushi
     
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,117
    Likes:
    960
    Concord, NH
    Perhaps you should enter a wet Tshirt contest?:eek: LOL;)
     
  18. Sean

    Sean Senior Member

    Messages:
    1,307
    Likes:
    2,338
    I can assure you it would not be very exciting viewing. :Retro redface:
     
  19. minkeygirl

    minkeygirl Narcissism = lack of self awareness

    Messages:
    2,328
    Likes:
    1,513
    Left Coast

See more popular forum discussions.

Share This Page