msauve

Hello

I too seem to need it not to hot and not too cold. I really hated the cold
last winter - even more than I normally did which is a lot! ) But this is my
1st summer with CFS and the last few days I hae had the worst case of nausea
and dizziness. I have found it even worse than the fatigue. I looked up NMH
on the net and found it is a common symptom of CFS which can be brought on by
heat. The last few days have been VERY hot so it seems to fit. It also says
It can be brought on by stress and eating can make it worse. I do feel worse
after I eat so now I don't want to eat. And I AM STRESSED LATELY B/C MY
GENERAl illnes benefits are up at work so now I have to apply for long term
disability and they are giving me a lot of grief re. it. Sigh... It's bad
enought to be so sick but to have people not beleive you is worse! The
article is basedon Dr. Cheney's recommendtions and says if it is mild then it
can be treated with salt water which I am now drinking. My doc is going to
trey a saline IV on me this week so I'll let you know how that goes. He also
says that people with CFS should be tested for Diabetes Insipidis (sp?) as 50%
of them have it. He says if you ahve that hte NMH can be treated with
vasopressin nasal spray. Anyone else have that?

Thanks for listening. May we all feel at least somewhat better soon.
Monique


<CFS-L@MAELSTROM.STJOHNS.EDU> =====

dawns.rose

Hi Monique.

I'm so sorry you are struggling so.

Now that you mention it, I do get dizziness and nauseous, however, for some
reason for me it is less intense overall than the way I feel in winter. I
also have had phases where the sun gives me horrible head and eye aches so
who knows. I also get sparkly lights in my eyes almost every day when it's
warm/hot. I drink a lot of water and eat right, however.

Thanks for sharing the info on Diabetes Insipidis and also Dr. Cheney, I
will look it up on the web right now. Sounds like you have a good Dr.

Perhaps salt water WILL work...I had to go to the E/r this winter and the
general IV (whatever is in it!?) helped me feel better!

It must be awful for you to deal with everything physically and then work,
too. There may be people here that can help you specifically with the
disability issues.

Good luck (to all of us!).

Tammi

----- Original Message -----
From: "msauve" <msauve@ualberta.ca>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Monday, July 14, 2003 12:05 PM
Subject: Re: MED: Heat and NMH

cold

is my

nausea

NMH

by

says

worse


term

it


also

50%


far

dawns.rose

BTW, even with dizziness and vertigo, when I had the NHT tilt table test, it
came out fine. Go figure. Has anyone else had that experience? ie.
normal tilt table yet dizzy, nauseau, etc? (I've had this for 15 years and
have had dizziness of varying degrees from the beginning).

Tammi
----- Original Message -----
From: "msauve" <msauve@ualberta.ca>
Newsgroups: alt.med.cfs
To: <CFS-L@MAELSTROM.STJOHNS.EDU>
Sent: Monday, July 14, 2003 12:05 PM
Subject: Re: MED: Heat and NMH

cold

is my

nausea

NMH

by

says

worse


term

it


also

50%


far

msauve

my gp won't do the tilt table test with me. he said he has seen it done and it
made people really sick so he didn't want to put me thru it. what else could
the dizinnes and nausea be caused by? have you found anythign that helps them?
what do you find brings it on? i noticed in the new yorker story by
hillenbrand that she had those symptoms really badly.

monique


<CFS-L@MAELSTROM.STJOHNS.EDU> =====

msauve

Hi Tammi

Thanks for your reply.


Yeah the last few days it's like the sun burns my eyes which also hurts my
head. Strange as I used to love the sun.

He's good in that he cares and tries things I want to try but he doesn't know
that much. I find things on the net or in books and then ask if we can try
them.

Yeah last time I had my adrenals tested they used a sline iv and i fetl really
good for a few weeks after that. wouldn't it be great if a simple thing helped
so much?

i will get ahold of my mom's friend and find out re. the nasal spray.

take care monique

kanon11

I took vasopressin for a while for Diabetes Insipidus, but didn't know it
would also help NMH. My NMH wasn't so bad at the time though. (It was much
worse in my early years of CFS. Now, I'm more in the brain fog area.) I
stopped the vasopressin though because after more research, I decided
hormone replacement wasn't for me. My approach to healing myself is to fix
the endocrine glands themselves, not just take the artificial hormones.

I was diagnosed with Diabetes Insipidus because I was getting really
thirsty and urinating a lot. A test showed a low hormone level (I don't
remember the exact name, but it's the pituitary anti-diuretic hormone.).
After stopping the vasopressin, I thought some more and realized that the
thirsty/urination times corresponded with times I was over-exerting or
under stress. Realizing that and making the appropriate lifestyle changes
enabled me to control the symptoms.

Of course, maybe not everyone here can change their lifestyle like that.
I'm lucky in that I don't work or have a family, so I have that freedom. My
feeling is that unfortunately, this is the only way to really help CFS
sometimes. You must somehow reduce stress to very, very low levels and get
a lot of rest--so much rest that you can't stand it and go out of your mind
with boredom, which is in itself a stress, which requires a radical change
in attitude. You have to decide to relax and enjoy each moment instead of
always having to be productive, give yourself a break, listen to your
body's needs, all that stuff we CFSers tend not to do! I think it's a big
part of the reason why we got sick in the first place.

Kanon

bliss

KK> At 08:47 PM 7/14/03, Rachel Stein wrote:
KK>> Are you familiar with the US Women's Soccer star, Michele
KK>> Ackers? She was an amazing player despite fighting CFS --
KK>> she would rest quietly for most of the game, and they would
KK>> save her for the moments they really needed her.
KK> I've always wondered about this person. To excel at a sport,
KK> one needs continual training, usually at least a few hours
KK> 5-6 days a week minimum. (I was an athlete too before I got
KK> CFS, but I had to quit everything.) How in the world could
KK> someone with CFS do this???

Well she had assistance and got saline ivs frequently right
in the clubhouse as I was given to understand at the time.
KK> I mean, I can summon it up like you describe, bursting out
KK> 5-10 minutes of intense energy before collapsing, but I can't
KK> maintain anything even approaching a normal
KK> day-in-and-day-out training of a top level athlete. I know,
KK> cuz I've tried!
KK> Kanon

Yes I tried to resume my normal health oriented training and
because I kept trying and not getting what my body thought was
adequate rest I kept crashing. Akers would go out and play then
head into the clubhouse for her saline iv post exertion. But she
finally decided it was too much to continue and retired from
competition.

Wish I could go to the ER and get a nice cool saline iv right
about now. ;^) Yesterday about this time as I was climbing the
stairs in the SF Public Library I really decided I was at the
edge of a crash. Now I have to take care of some business
with a raw chicken and a hot oven I hate to deal with it now
but "needs must as the devil drives". Then I intend to collapse
on the bed with a 150 minutes of Anime! Will I move more than a
finger on the remote control? I hope not.

later
Bobbie Sellers

--
bobbie sellers - a very tired & retired ex-nurse in San Francisco
bliss at california dot com

"Life, liberty, and property do not exist because men have
made laws. On the contrary, it was the fact that life, liberty,
and property existed beforehand that caused men to make laws in
the first place." -- Frederic Bastiat

hesapa

LOL. I get a kick out of it when people tell me I must "listen to my
body." These people invariably mean well and don't know me. My doc of ten
years tells me I'm the most "Body Wise" patient she's ever had. What the
well-meaners are used to is a body which will slowly recover, get stronger,
with very gentle stretching and work. Don't push, listen to your
body. What they can't, experientially, understand is that our bodies don't
recover. Push, exert, and you just build up muscle toxins and anaerobic
deficit. Don't exert at all, you wither. Do only what your body can
support at that moment, you wither more slowly. And sometimes the raw
chicken is as much exertion as you can manage. I am becoming adept at
soups made with canned/frozen ingredients, or "cooking" the ingredient in a
strainer, in a bowl, with a tea kettle of boiling H20 poured over and left
to sit 3 or 4 minutes. Great for frozen veg or raw shrimpettes. Douse 'em
with olive oil and they keep in the fridge for a day or two without getting
all bendy. I think we could merge our strategies, all of us, for a
compendium: Low Impact Living. best & cheers, Marnia who never even
owned a tv till laid flat out by CFS.

tony23

Kanon, there are degrees of illness. Ackers was given glucose injections during the game to help her. She is ill and deserves a lot of credit trying to participate, but I feel she is just hurting herself in the long run.
----- Original Message -----
From: Kanon K.
Newsgroups: alt.med.cfs
To: CFS-L@MAELSTROM.STJOHNS.EDU
Sent: Tuesday, July 15, 2003 2:31 PM
Subject: Re: MED: Heat and NMH

I've always wondered about this person. To excel at a sport, one needs
continual training, usually at least a few hours 5-6 days a week minimum.
(I was an athlete too before I got CFS, but I had to quit everything.) How
in the world could someone with CFS do this???

I mean, I can summon it up like you describe, bursting out 5-10 minutes of
intense energy before collapsing, but I can't maintain anything even
approaching a normal day-in-and-day-out training of a top level athlete. I
know, cuz I've tried!

Kanon

andrea

You're right, there are definitely degrees of illness. And what we are
capable of doing after being struck by this DD has to be seen relative
to what we were able to do before.

A friend of my ex's used to ride centuries (that's bicycle races 100
miles long!) and do other similarly athletic things almost every day
before becoming ill. After several years of doing everything he could
think of to recover, he is able to go on slow bike rides of 3-5 miles on
occasion, and do some yoga or Tai Chi most days. That's still more than
I can do, and is closer to what I could do before CFIDS. But for him,
it's a major decrease in functionality.

So I cringe when I hear people say "oh, s/he couldn't possibly have
CFIDS if they can do THAT". We are not in a competition as to who can
suffer most or be most impaired. I'm sure Michelle Akers is greatly
impaired from what she used to be.

--

Andrea Frankel (andrea at oro dot net) Nevada City, CA, USA
"...wake now! Discover that you are the song
that the morning brings..."

"One is taught by experience to put a premium
on those few people who can appreciate you
for what you are." - Gail Godwin