I hate This MS

[Sailorsong]

Well I almost made another trip to the ER tonight.

It was 110 here today and if that wasn't enough t I lost power for about 2 hours. Luckily I was out shopping during the power outage but my house was up to 98 when I got home. It still is at 91 right now as my AC just doesn't do that good of a job with cooling my home. Anyway around 8PM I was having my usual heart attack symptoms (have had 2 in the past) but since they had determined the last time it was my MS causing them I decided to try cooling off.

I keep my bedroom at around 60 with a room AC since I tend to get a lot of muscle cramping if I'm too warm so I headed for my bedroom. After about 20 minutes the symptoms went away and I was feeling better. But I stayed in my bedroom for about 1 hour. It only took about 15 minutes in the heat of the rest of my house for the symptoms to return so I am pretty sure that it is this heat causing it.

I sure wish the VA had given me a cooling vest. I sure could have used one today!

Dennis

[Sailorsong]

Since I don't have a bathtub in my home that one is out for me. But I do take cold showers and sit in front of a fan on high to keep at least a little cool between my trips to the bedroom.

I have tried several times to get my doctors to give me a muscle relaxer. But they just try to give me antidepressants instead.

Dennis

[jensequitur]

I've tried the cooling neck wrap, but it's so huge that you feel strangled while you have it on.  My vote is to take a cool bath.  I always feel more like myself after running cold water on my head.

I also think if you're having that much trouble with the MS hug, then you need to be on some sort of muscle relaxer.  You're probably not aware that I just titrated off Baclofen.  One of the reasons was that it really didn't seem to do much for the chest spasms. Tizanidine works really well for the spasms - I would try and see if you can get a scrip for that.

[HVAC]

You can make a cooling vest using a fishing vest with all the pockets and the ice packs you can cut up. I got my fishing vest from ****'s sporting goods. They sell the ice packs at Wallmart. I used a homemade vest before I got my vest from MSAA. In someways my home made vest is better than the MSAA one. It is lighter for one thing.

Alex

[Sailorsong]

Lulu & Michelle

I tried looking into the fishing vest Idea last year when it was so hot. All of the vest I could find had built in life vests that are between you and the pockets. Therefore the life vest becomes an insulator to the ice packs.

Dennis

[Lulu54]

Wow, Dennis. You might try being bored for a while to stay cool. I see Michelle gave you the tip on the fishing vest.  You might give that a try.  Stay cool, L

[michelleric]

Hey Dennis,

I have a suggestion, that I think came from Alex originally.  You can get a fishing vest, the kin with tons of pockets.  Buy a bunch of cooler packs, the mushy ones that come with meds sometimes.  Or even the hard ones, if they are small enough for the pockets.

Fill the pockets with the packs, and there you have a cooling vest!

Stay cool,  really hot here.  Didn't go to sons baseball tournament this weekend which is 2 hours away.  We have a nice hotel booked for a weekend " vacation" which I am missing. :(.

Apparently the 1st game, my son came in 7 th inning to be the closer, and shut them down!  I hate missing his games.

Oh well, better off here than end up not being able to Walk in this heat.  Just another loss with this nasty MS.

Michelle

[Sailorsong]

Thank you for your response as well.

I would have stayed in my bedroom but that is just so boring. No computer, TV, or anything else to do there except sleep or twiddle my thumbs. :)

Dennis

[Sailorsong]

Thank you for responding!

I have too much income to get one through MS society. I probably could lie about that but that is just not in my nature. I also am not on any of the DMDs so that option is out as well.

Today the heat is again brutal (103 already) but at least the power is still on so my home is not quite as hot as yesterday. Thankfully the bedroom is keeping things under check today. But it also means I'm not getting anything done around the house. I really wanted to go out to eat tonight so this gives me a good excuse for that at least. :)

Dennis


Dennis

[LisaJF]

Sorry you went through those symptoms with heat, but am glad they resolved after 20 minutes of cooling off.  Should of remained in your bedroom! :D

Jen gives great sound advice!!!

Here's to keeping cool!

[jenphilly]

Dennis,

Have you tried the National MS Society for the cooling vest?   Are you only dealing with the VA for your care?   My neurologist told me to let her know if I needed one, her office will help getting one for me.

Also, what med are you taking?   Shared Solutions offer the cooling neck wraps, kinda like a long bandana with the beads sewn in.  You soak it in cold water.  I personally don't think the water alone helps that much, but I throw them in the freezer and take them along frozen, so they really last a while :)  

If you can't get one on your own, let me know, Shared Solutions sent me two for free, I will call and ask for another.   Send me an off post message and I'll be happy to help if you can't get anything ;)

Jen