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klconner

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Reply with quote  #16 

I'm so happy you found something that works for you.  Hope you're feeling better soon.

kate


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Horanimals

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Reply with quote  #17 

Glad you are able to stop the every morning thing too Sheryl...that's awful.

May I ask?  Does the hot bath help everyone in a "nausea phase" only?  Or do you do it during a full blown cycle as well?  I'm just curious here.  Thanks!


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~Lesley
mom to Riley-12, CVS since age 2, & Autism, Jake-21, and Josh-16

There are two ways to live your life:
One as though nothing is a miracle and the other as though everything is.
~Albert Einstein
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klconner

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Reply with quote  #18 

If it's a little nausea, I use an ice pack on the back of my neck.  If it's alot of nausea I jump  in the hot bath, sometimes keeping an ice pack on the back of my neck.  When I'm throwing up I have been known to get out of the water just long enough to throw up, but after a while I run out of energy and patience and just flop on the floor and bow to the porcelain god as needed.

kate


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Chopinmrl

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Reply with quote  #19 

Hey Kate,

 

This may sound crazy but it works for me.  The vagus nerve (a cranial nerve that innervates the stomach among other things) runs down the left side of your neck.  For me, putting the ice pack on the back of the neck helped but when (at the advice of a nurse) switched it to the left side of my neck (particularly between the tendon that runs down from behind my ear and my trachea) it really helps.  It reduces the frequency of the dry heaves & retching possibly by cooling down the nerve and slowing down action potentials telling the stomach to heave.  Sometimes I use two ice packs: one of the back of my neck (for comfort) and one on the left side to slow down the heaving.

 

MR


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Mary Rachael
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BDavis

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Reply with quote  #20 

Sheryl,

I'm glad you found something that is helping!    I hope it works for you for a long, long time!

 

Lesley,

I can't even imagine taking a hot bath while cycling, or while feeling nauseated.  Not only would I pass out, I get warm when I'm cycling, so the thought of heating me up even more kind of makes me queasy just thinking about it.  When I'm cycling (I only have her do this for me during the really tough ones) my mom will get a big bowl and put a lot of ice and water in it.  I dip a wash cloth in the water and ring it out on my face.  I would take an ice bath if I could!  Does anyone else get warm while cycling??

One thing I find interesting is that when I am cycling I run a low temp. (at most 96.5), and it seems that sometimes the people who like the heat while cycling run a mild fever.  I think there is probably an explanation for that, it is just a pain in the butt to find the answer.

 

-Britt


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klconner

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Reply with quote  #21 

I am gonna go try the ice trick as soon as I get off!  That is if I can get my ice packs away from Jake.  He is sleeping on them and purring contently at the moment.   My AC broke and it's still over 90 degrees in my house. (note the time is after 11pm)  I haven't felt like eating all day.  I just sit here and sweat and pray that this doesn't land me back in the hospital.  Meanwhile I have a tension headache and that queezy feeling. 

 

Britt, this is one time I can definately say a cold bath has helped more than even thinking of a hot bath.  I usually have a low body temp all the time.  If I can hit 98.6 I am running a fever.

 

kate


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mahler1987

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Reply with quote  #22 

Mary thanks for the tip on the left side of the neck.

 

As for body temp, with the lupus I seem to run low much of the time by a degree  or so. It takes a whopping infection and inflammation to make it rise to the degree most ppls would. The combination lupus/fibromyalgia I am sensitive to cold, so thats why I think I find comfort in the warmth of a bath.  Hot showers make me weak in the knees literally. So i find comfort in the tub where if i pass out.. well i'm already on my behind.

 

I know tho that as of recent I feel like I am fighting this battle every day, nausea and just feeling like dirt.  Then once a week -10 days I go full blown.

 

But I will say its a dream treating at home and only heading to the ER for the really bad ones.

 

We are in for a major heat wave this weekend.  Bill and I are heading back up to my mom's, the county fair is in town there and that was our first date 20 yrs ago. Its an anniversary thing I don't want to dissappoint him but, I am scared.  We just came back from there late last week. 

  I really had one of the worst episodes in awhile.  He took me to the local ER there, where I was made to wait in chairs for well over 3 hrs.  We had my cvs stuff, told then time was of the essence that this needed to be stopped or I was in for a week or more of this.   Well they hadnt treated it as CVS.   So I sat there and sat there while they took ppl in with a facial swelling not painful... just swelling, another who was simply a drunk diabetic and their family was upset he was in that condition.. and I can't even begin to describe some of the conditions/complaints seen before me.  Bill was livid. I was too sick to care.  At one point we were going to leave and drive the 2.5 hrs back to my ER.

 

 Once I finally got the fluids and meds I needed, they woke me up 90 min later saying I wasnt vomiting/wretching anymore and I needed to go home.

 

  What I am concerned most about is going back this weekend, what do I do if this happens again?  I surely dont want to have to return to that ER.  What do the rest of you heat sensitive people do.  One thought I had was to stay in the pool as much as possible.

 

Any thoughts??

 

Pattie

 

 

 

 


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klconner

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Reply with quote  #23 

A nice cool pool sounds real nice, especially if it was indoors.  Some of the meds I take don't allow me to be in the sun.  You could invite all your friends to join you in the tub, but that could be a little crowded. 

 

Seriously, right now I could use all the tips for staying cool and cycle free I can get.  I don't know how I am going to handle the AC situation.  SSDI doesn't get here until the 26.  And when it does get here it goes to things like meds and food.   With the high gas prices eating up all of my "disposible" cash this could be one rough summer.

kate


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BDavis

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Reply with quote  #24 

I always run a low temp as well- usually about 97.1.  but it drops at least one degree while cycling (they take my temp in the ER, so it is long after the ice bath lol).  

 

I'm so sorry you guys aren't feeling well.   This summer isn't going all too well for us, eh?  I don't know any great tips on keeping cool other than the obvious ones you guys already know.  I'm sorry I can't offer more help!

 

Pattie, I hope you can enjoy your anniversary feeling well!  Good luck, and I will be sending positive thoughts your way!

 

-Britt


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mahler1987

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Reply with quote  #25 

Thanks Kate and Britt

I agree this summer is being a rough one all the way around!


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Horanimals

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Reply with quote  #26 

Thank you all for the insight...I'm with Britt, I can't imagine Riley wanting a hot bath during a cycle, and he has very few moments of nausea, he usually just starts vomiting...so that's what I was wondering, is it the nausea. 

MR - thanks for that tip, I will definitely keep that in mind for Riley next time. 

 

I remember when Kevin (hubby) used to have migraines, he would always do a hot cloth on the back of his next, and a cold one on his forehead.

 

Kate, I'm SO happy your AC is back, crazy weather and all, that's just not good to NOT have right now!

Pattie, good luck on that your trip...It seems ridiculous to me that people don't just do what is asked, what is proven to work over and over for them.
I'm doing the dance to the CVS gods that they just leave you alone...let you celebrate your 20 years!   Congratulations!!!

 

This has been a crazy summer for everyone, I've been thinking that too.  Keeping you all in my thoughts...


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~Lesley
mom to Riley-12, CVS since age 2, & Autism, Jake-21, and Josh-16

There are two ways to live your life:
One as though nothing is a miracle and the other as though everything is.
~Albert Einstein
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mahler1987

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Reply with quote  #27 

Thanks Leslie...

I sure appreciate that 20 yr anniv of our first date, will be married 19 yrs in October.  I so dont want to dissappoint him.  Tho he can tell hes already comment  that i'm white as a sheet.

Pattie


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Chopinmrl

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Reply with quote  #28 

Lesley,

When I was little, I had very little anticipatory nausea.  Basically I woke up vomiting.  There is no way that I would have agreed to get in a bath.  However, after starting amitriptyline, I now seem to have a window where I don't really feel nauseous per se but I wake up and don't feel right.  If I take my meds immediately, I can abort the cycle.  Hopping in the tub (with a bucket right next to it, with an ice pack, and the lights off (I leave the hall lights on)) help me keep from going into a cycle long enough for the meds to work. I'd suggest explaining to Riley when he is not in an episode that hot baths help some people with CVS and see if he thinks it sounds like something he thinks would help.  At the very least he would know the option and maybe try it sometime.  I didn't think to try it until I read about it on the message board. 

 

Something I've noticed that is a little odd, but if I've had a stressful day (aka lots of excitement, etc) I always take a bath before bed.  Even if I come in from a dance at 12:30 AM, I soak in the tub for 10-15 minutes.  I used to just head straight to bed since I don't deal well staying up late, however, the bath seems to calm my body down and I am less likely to wake up and need the abortive meds.

 

MR


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Mary Rachael
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Reply with quote  #29 

I remember in reading something about insomnia that a warm bath starts your body's natural cooling system.  Maybe that's what the body needs?  Mary Rachael, that's so interesting about the vagus nerve.  I was saying on another thread that both my sisters have a condition where they faint because of the vagus nerve, and maybe Maggie inherited that but it presents in a different way.  I'm definitely putting a cold pack on the left side of Maggie's neck if she ever seems to be heading for an episode.  Love, Marie

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Horanimals

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Reply with quote  #30 

Riley's currently not feeling well (hasn't started the vomiting, but he's been clutching his bucket for a few hours).  As usual, he is complaining that he's "hot"...

I'm going to try both your tips Britt and Mary Rachael ... and hope that something kicks in for him.  Thanks all for shedding a light on this for me.


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~Lesley
mom to Riley-12, CVS since age 2, & Autism, Jake-21, and Josh-16

There are two ways to live your life:
One as though nothing is a miracle and the other as though everything is.
~Albert Einstein
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