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Re: temperature regulation

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I too have temperature problems.

I get VERY hot and sweaty easily and for NO apparent reason (i get

bad night sweats and VERY hot in bed sometimes) and my temperature

seems to naturally run that way (I also have RSD and this can cause

temperature regulation issues too I am told) but I have a thermometer

to keep a check on it and when ever I am sick I tend to get the fever

but not always with a noticible temp spike.

On the other hand I also feel that cold badly (I also have Raynaud's)

and have to be careful not to allow myself to get cold (especially my

hands).

I wonder if it is EDS related as so many of our systems seem to be

interfered with by the EDS (more than most doc's think).

As we seem to be sensitive to many drugs it seems likely to me that

the drug WAS responsible for your son's reaction. I have

found/developed many allergies in my life (especially now in my

30's), and am very careful when trying new medicatins (and even keep

prednisilone on hand to combat serious drug reactions (I have had my

face swell up like a balloon froma dose of antibiotics etc).

Good Luck with finding another med to use for your son's asthma and

with finding out about the temp regulation problems. I would be

interested in anything you find out about it.

Sharon (shazinoz)

> Temperature regulation problems?

>

> Yes but not as you describe.

>

> I have dysautonomia and my hot and cold is all whacky.

>

> My brother when he was a very little boy used to spike temps as you

> describe.

>

> 50+ years ago all they did was a spinal tap and that was neg.

>

> No temp problems for him since then.

>

> He gets really bad migraines like me and my dad used to too. Not

sure if

> that is at all related.

>

>

>

> My temp spikes have more to do with environmental issues coupled

with my

> autonomic system overreacting. more complicated that that but that

will do

> for now.

>

>

>

> I run a low normal @ -97 degree but I have heard that is pretty

typical for

> most of us.

>

>

>

> Debbi

>

> AKA: jetskideb

>

> SoCal EDS'er

>

>

>

> questions

>

>

>

> Hi all, I have a few questions.

>

> My daughter Kaitlyn, was dx Oppositional defiance disorder in june.

Does

> anyone know if this could have anything to do w EDS? Also does

anyone else

> have temperature regulation problems? When we get a fever it

skyrockets and

> can easily produce febrile seizures. My son Lodin was given

singulair

> granules to begin treatring his athsma. He is 15 months. We gave

him 1 dose

> and he got hotter and hotter, and went from being healthy to

seizing from a

> 105-106 temp. he was seizing for almost 2 minutes and was rushed to

the

> hospital in an ambulance. according to the papers that came along

with the

> meds it said fever was a serious side effect, and possibly

seizures, however

> the dr.'s have sworn up and down that there is no way that it could

have

> caused this. However within 4 or 5 hrs after this happened and he

slept for

> most of this time he was perfectly healthy again. I have not given

him more

> after that one dose.

>

>

>

> Any ideas? I applied for my hubby and both kids when I sent my info

to nih.

>

>

>

> Thanks in advance,

>

> Autumn

>

>

>

>

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In a message dated 8/26/2004 9:12:06 PM Pacific Standard Time,

jetskideb@... writes:

I run a low normal @ -97 degree but I have heard that is pretty typical for

most of us.

Subnormal temps do seem to be common, as do the temp regulation and the

migraines too. All of those symptoms are called 's Thyroid

Syndrome.....check out 's Thyroid Syndrome -- Hypothyroidism --

Hypothyroid -- Thyroid

disease for details and how to correct this without meds. This is one of the

issues that makes some suspect EDS has an autoimmune component, as this syndrome

is common in all autoimmune disorders too.

A couple of the underlying factors in thyroid malfunction are flouridated

water and chlorine. Check out the chapter on water at thedoctorwithin,

vaccines,

holistic nutrition, enzyme therapy, chiropractic, mercury in vaccines, FDA,

immunizations

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These are also symptoms of dysautonomia

Debbi

AKA: jetskideb

SoCal EDS'er

Re: temperature regulation

In a message dated 8/26/2004 9:12:06 PM Pacific Standard Time,

jetskideb@... writes:

I run a low normal @ -97 degree but I have heard that is pretty typical for

most of us.

Subnormal temps do seem to be common, as do the temp regulation and the

migraines too. All of those symptoms are called 's Thyroid

Syndrome.....check out 's Thyroid Syndrome -- Hypothyroidism --

Hypothyroid -- Thyroid

disease for details and how to correct this without meds. This is one of

the

issues that makes some suspect EDS has an autoimmune component, as this

syndrome

is common in all autoimmune disorders too.

A couple of the underlying factors in thyroid malfunction are flouridated

water and chlorine. Check out the chapter on water at thedoctorwithin,

vaccines,

holistic nutrition, enzyme therapy, chiropractic, mercury in vaccines, FDA,

immunizations

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In a message dated 8/27/2004 3:37:45 PM Pacific Standard Time,

rd2retirenow@... writes:

Hi Liza,

Ditto for me on the temperature regulation thing.

Normally run a low temp about 97.4 but paradoxically

have problems with night sweats and hot flashes

despite maximal doses of HRT. Another frustrating

problem is the reoccurence of headaches either

migraine or cluster, not sure after many years

abscence. All thyroid functions are completely normal!

Pam>>>>

Yup....but those tests they run only test the levels of thyroid T3 & T4, not

the ACTIVITY between them. Our activity level of thyroid hormone seems to be

the issue, and most docs don't test that routinely. They run the one test, it

comes out normal, they assume we are fine. My insurance wouldn't pay for the

proper test....but I have a similar issue with my old cat, so I paid to have

the same type test run on him & Voila! Major hyperthyroidism! We put him on

an herbal product for thyroid & it seems to be doing very well. So I tried Dr

's supplement regime & within a couple weeks my body temps went from

96.6 average to 98.2. Same with my daughter. Our energy level has improved,

her depression is much less....the only issues it hasn't cleared up for us seem

to be GI sensitivity and reactions to some foods, so that could be something

we haven't found the reason for.

Liza

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In a message dated 8/27/2004 3:37:45 PM Pacific Standard Time,

rd2retirenow@... writes:

Hi Liza,

Ditto for me on the temperature regulation thing.

Normally run a low temp about 97.4 but paradoxically

have problems with night sweats and hot flashes

despite maximal doses of HRT. Another frustrating

problem is the reoccurence of headaches either

migraine or cluster, not sure after many years

abscence. All thyroid functions are completely normal!

Pam>>>>

Yup....but those tests they run only test the levels of thyroid T3 & T4, not

the ACTIVITY between them. Our activity level of thyroid hormone seems to be

the issue, and most docs don't test that routinely. They run the one test, it

comes out normal, they assume we are fine. My insurance wouldn't pay for the

proper test....but I have a similar issue with my old cat, so I paid to have

the same type test run on him & Voila! Major hyperthyroidism! We put him on

an herbal product for thyroid & it seems to be doing very well. So I tried Dr

's supplement regime & within a couple weeks my body temps went from

96.6 average to 98.2. Same with my daughter. Our energy level has improved,

her depression is much less....the only issues it hasn't cleared up for us seem

to be GI sensitivity and reactions to some foods, so that could be something

we haven't found the reason for.

Liza

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http://www.wilsonssyndrome.com/

Go check out the products pages, he has several supplements there. I worked

with one of the osteopaths listed on his site to see just what I was deficient

for. There is a list of all ingredients for each formula. Each symptoms you

have can be looked up to see what might help.

Liza

http://www.wilsonssyndrome.com/Products/HealthyFoundation.htm

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