spinner

Im dreading it too. I HATE heat and it makes me weak and dizzy and sick.

Early on I learned to get a good quality portable thermometer to carry in your backpack. You can check temps various places.

Gatorade is your BEST FRIEND if you cant avoid heat. Or powerade zero.

Clothing is essential for me. I wear only cotton, light shortsleeve thin shirts and light khakis.

Drinking water is huge. A little salt if needed.

Places like the Cleveland clinic can perform sweat tests. You might want to rule out anhidrosis.

INFLAMMATION for me was also crucial. Dr. Hyman's "inflammation is burning up your body" is good.

I suspect vessel constriction is key here.

What kind of apnea do you have?

Should you be on bipap or cpap?

Are you snoring and if so, caused by tongue or weak/narrowed midneck muscles collapsing?

You have to have these answered before making much progress in my exprerience

YES, AND LOOK INTO DR. CHENEYS WORK WITH excitotoxins such as MSG and autoimmune.

Some people are HYPER sensitive to excites, and it makes them desperately ill including DYSPNEA

Just guessing that some people can suffer breathing problems with chest muscles.

The "miracle" rarely happens.

But improvement/management DOES. We have to do constant research--why we're all here.

Solutions are individualized. You will find others just like you and find things that helped just like they did.

APNEA DOCTORS ARE PRETTY CLUELESS BECAUSE MOST OF THEM DONT HAVE APNEA. THEY HAVE NO IDEA HOW DEBILITATING IT IS--IT CAN KILL AND CAUSE STROKE. I HAD TWO TOP RATED ENT DOCS TELL ME ABSOLUTE GARBAGE. APNEA UNTREATED CAN RUIN YOUR CENTRAL NERVOUS SYSTEM.

I had a respiratory doctor say something similar to me last year. I was undergoing sleep studies as I have lots of problems sleeping and have wakefulness, nightmares, twitching/jerking, apnoea and cessation of breathing, tongue-biting etc and he didn't think there was anything abnormal about my sleep and said it was just about my perception of the problem being different to other people. So is it normal to stop breathing (three people have witnessed this happening)? Is it normal to bite my tongue to ribbons as my head violently jerks? It is unbelievable what people say....

My sister a nurse told me "you just have the same aches and pains of anyone else your age"

Sorry about your situation. Im not giving advice. But i will say klonapin has helped me with "exertional intolerance" problems. What i call a sudden spike of blood pressure.

Benzos are controversial and have to be carefully used, however, for some of us here they make horrible triggers

bearable, apparently by binding to nerve receptors in the CNS and ANS.

Yep, we just have to learn that. Especially with "nurse experts" or ilk.

NOt to typecast.

But she's been simply unbearable.

I sent reference to dysautonomia and she said "so youre saying youre suffering from an infant disease"??

She's just a really obnoxious person beyond this whole thing.

How long did it take for them to stabilize the heart beat? How did they do it?

My sister is a nurse. And i wish id never even begun to describe any of my medical problems because she considers herself

some kind of Neurologist with a Psychology degree.

She blurts out any kind of advice/thoughts that cross her mind and i had to basically cut her off.

I've tried to recently reconcile but even then she emailed some more unsolicited advice.......both medical

and observational (everyone has chronic disease!)

Moral of Story: If ANYONE starts this barrage of infuriating behavior, make it immediately clear that you love them

but you have no intention of letting them giving any advice whatever.

"My Neurologist. at Cleveland Clinic is handling it" or whatever is best.

A few of these people you will probably have to cut out of your life entirely.

This can be perfectly normal---as in a perfect EKG--for some people with lower beats. But it could also be a sign of other

things so its important to differentiate.

I can only speak from experience. I have this condition myself. I personally believe one time I went "low" due to dehydration. Wonder

if salt is a factor with others?

Googling helps. I came across this link recently The brain gut axis is vitally important to all of us. Understanding how it basically functions is really a study in how our liver protects us. Our liver is the last line of defense before the brain is assaulted. Once the brain is involved , hormonal disruption ensues first with leptin resistance and then cascades to every other hormone in some fashion. Once this occurs the brain loses its control over cellular homeostasis and neolithic diseases become prevalent. We can understand this process dynamically when we look out our VAP profiles.

For more Paleo Diet hacks: http://paleohacks.com/questions/65534/how-do-you-hack-a-leaky-gut.html#ixzz2rFCANj7Q
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When googling i always correlate all kinds of words and see what comes up

http://paleohacks.com/questions/65534/how-do-you-hack-a-leaky-gut.html

This is an interesting article about a suspected cause of chronic disease. This reads like a flow chart on the interaction from autoimmune disease, nervous system breakdown, and finally to the harm to liver and brain and gut axis.

""""The brain gut axis is vitally important to all of us. Understanding how it basically functions is really a study in how our liver protects us. Our liver is the last line of defense before the brain is assaulted. Once the brain is involved , hormonal disruption ensues first with leptin resistance and then cascades to every other hormone in some fashion. Once this occurs the brain loses its control over cellular homeostasis and neolithic diseases become prevalent. We can understand this process dynamically when we look out our VAP profiles."""""

I've been dealing with this for a long time, my physician is Dr. Shields at Cleve Clinic. in neurology.

A couple thoughts but not advice of course.

What are your thyroid numbers? Have you been tested for lupus? Have you had a heat stroke before?

Do you have inflammation???? A c reactive protein test? Tested for ganglionic antibodies?

Just throwing out some things they "look" for, thyroid, blood vessel contraction issues, inflammation and autoimmune, hormones various

with ageing, the ability to sweat (also called anhidrosis),

but ive read a lot about LOW BODY TEMP (which i have) related to thyroid but still feeling hot. You've got a lot

of homework to do.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671239/

"Autonomic Neuropathies Associated with Ganglionic Antibody"

Just had TST sweat test at CC with Dr. Shields (diminished sweating), and he wanted to re-do my test for ganglionic antiobody, which i scored high out of range on again.

Also have scored high for inflammation with C REACTIVE PROTEIN. Lactase is also low, out of range.

Anyone else dealing with this? They've scheduled a body catscan to rule out various cancers, although the likelihood is small.

PIC BELOW: (please advise on how to post image from desktop) Finally had my TST test at Cleveland Clinic today in Neurology in J Building. Dr. Shields is my Physician, autonomic neuropathy testing--- http://my.clevelandclinic.org/staff_directory/staff_display.aspx?DoctorID=505

117 degrees (highest temp) in the chamber shown in pic. Body temp went up to 102 (closely monitored). I lasted an hour, which shocked me. My sweat glands seems

to be functioning, but at barely a trickle. Was basically "damp" after an hour. Other tests show a lowered lactate (lactic acid), an elevated

CProtein inflammation, slightly lower c02,

Wonderful Doc, very thorough and caring. This was a follow up to a previous test that indicated limited sweating. I dont have POTS but I have every other symptom of DA. Should be interested to see the results, how i campare, and what they can do. I simply cannot cool off at anything above 75 degrees which makes normal life impossible.

There are many of us. I dont have class POTS. My cardio events are not usually an explosion of heartbeat, low blood volume,

or BP problems. In fact i have brady cardia usually--low beats.

Ive never actually fainted straight out although thousands of times ive felt like i was going to do so.

I also had sudden onset, im guessing brought on by severe interruption of my autonomic/sympathetic nervous system initially

caused by leaky gut and sleep apnea.

I have beyond severe heat intolerance. I went from a tennis player to only walking and NEVER suddenly exerting.

I get dizzy and weak.

I have shortness of breath.

Ive learned to manage with a myriad of things but i also use klonapin-----amazingly this drug helps so many people

with chronic illness. It seems to bind to nerve receptors in the central nervous system.

Im also a big believer that we ALL have co-existing syndromes. Allergies, leaky gut, apnea, deficiencies, hormones,

vessel constriction, thyroid, and on and on.

Be encouraged in the fact that you have this board to come to when you feel at wits end.

We have ALL been there, and at the end of our ropes. We survived those times.

This disease is very much about management and experience.

Dont quit while your still acquiring information, how to avoid triggers, and while youre acquiring information.

It takes patience. Very few people here get continually worse, because they learn early on that as

they gain knowledge they gain more power over it.

Me for example. Beyond this problem, i have sleep apnea. This makes feel HORRIBLE but im CONTROLLING

it with cpap technology. This technology is new, imagine having this problem 100 years ago!

So i feel BETTER as i grow in the use of it. I also know how to avoid triggers now, and i have a medication

that fights off the worst of it when i feel awful.

I know im making progress, and keep coming here for help when you need it. Knowledge and experience

will lead to results. Everyone here will help.

E Soskis:

Ive been there. My ex wife divorced me----it was a number of problems and i did NOT sign the divorce

papers as i dont believe in it. However, she told other people she didnt think I was really that sick.

Fortunately Cleveland CLinic disagrees.

As you say, Ive driven myself to ER for palpitations, breathing problems. Many of those times I didnt

go in, i just sat outside "waiting it to pass". Sometimes it got worse and i had to go in. My ex wife

got angry for not awakening her, but i did it as to not bother anyone. One night, i left and came

back two hours later and nobody knew.

There is no way to describe to someone else how desperately sick you can feel when the bottom

drops out of your regulated heartbeat, bp, cooling system, respiration. Sure, it SOUNDS like

a panic attack, but i went 50 years without medical issues.

I wish I could be there to help you in the middle of the night like everyone here, but i wonder

if a local church or neighbor would be "on call". Believe me, there are plenty of people

who would help you at all costs at any time. I know this because I'd do it myself if it

were in my power. Sickness has its benefits---it demonstrates to us our mortality while

everyone around is busy much of their life away with trivialities.

It also makes us empathetic to those in need. And thats a good thing.

Hope youre feeling better soon. That can be scary. Im throwing out ideas for you to research, since with DA so many

other things can interact/cause/relate to original causation. This is not medical advice, im simply listing

things ive researched myself and found lots of information about

-allergy/gluten/MSG/ leaky gut/inflammation/autoimmune response

-salt/deficiencies/d3/magnesium/

-sleep apnea (where your 02 plunges overnight can cause ALL kinds of problems, muscular and 02)

-cardio, arrythmia, angina, valve,

DA/POTS, circulatory issue, constriction, pooling, hypovolemia, mast cells, eds

-asthma,

-adrenaline, adrenals, thyroid causing a "seizing" feeling, tightness in neck, agitation

-hydration

-neuromuscular issue (muscles in chest), enzymes,

-parasite/infection/lyme disease

-anxiety (low serotonin)

-hpa axis, vagus nerve

--question: if your cardio checks out have you ever sampled klonopin? Cautiously used it can

help with these types of things depending on your body. It helps me.

Then theres the issue of causation. How many have had dysautonomia onset because of gut issues- leaky gut,

exposure to something into their bloodstream, or made worse by sudden allergic autoimmune responses

to gluten or excitotoxins? Or damage to stomach lining, antiobiotics destroying gut lining. Or even lyme disease

or a parasite or even the protozoa theyre researching.

Maybe in most people that came first and then dysautonomia. I recently read that the average American's

diet is 20 percent wheat, which is a grass.

The tennis play Novak Djokovich has a book out Serve to Win, where he talks about extreme

weakness, dizziness, and onset asthma that caused him to have to retire matches early in his

career. Many of the same symptoms we have here.

It wasnt until he gave up gluten that he overcame it.

Yeah, doctors. I'll tell you one thing, once you tell them you use klonapin (in my case for adrenaline reactions in sleep apnea or for nervous system disturbances, agitation, heat intolerance)..........

they immediately peg you as an anxiety hypochondriac. They can only think one thing: this person has anxiety and thats causing the problem.

They cannot comprehend that you take the med in REACTION to your sickness---in my case "as needed".

One doctor who i wont name but is involved with DA cardio told me "so youre on a tranquilizer"???

But the thing is, i was healthy for 50 years with no breathing problems and no heat intolerance. So suddenly I overnight

started needing tranquilizers? We all know that our bodies are fundamentally different after onset, but they dont

Ive used doxepine (seroquel) and ive used klonapin.

The seroquel definitely seems to slow me way down and im going off it. I only used it 2/3 times a week.

Klonapin seems to HELP breathing problems, not sure why, but it must be the anti anxiety aspect or the binding

to histamine??? or just the calming of the central nervous system?

I dont really know but i have sleep apnea, and while it may technically worsen the possibility of central apnea events,

its pretty much the only med that works when i have a bad episodic apneatic event in the night and i feel like ive

been injected with pure adrenaline.

Its probably a catch 22 in my condition, obviously id love to go off all meds, but with chronic illness its always a

balancing act.

Queston: do you have a thick neck and have you had a sleep test for apnea?

One ENT i consulted with told me he knew i had apnea because of my thick neck. Weightlifting

type activity for a long time made it thicker, as can gained weight there.

Sleep apnea can cause a severe disturbance in your nervous system, and in your respiration.

Respiration issues can be related to or signify cardio issues.

Is there a potential correlation?

Through experience, its probably best to keep it simple. "I have a neurological disorder and my nervous system cant regulate my vitals".

Short and sweet.

To the above comment, yes people are obsessed with "living life", keeping it fresh, staying young. Ive done a lot of work around

very elderly people and i was very surprised that they NEVER talk about their mortality. They do talk about their latest test and how

to beat some particular ailment. But they dont admit they have few years or months left.

Since getting sick i talk about it with those who understand. Its very matter of fact. "when im gone, such and such". Not that im leaving

any time soon, but nobody has any lock on this planet. We all have an appointment coming up.

I have one particular friend who completely gets it, and we support each other, drive each other around, the ball of wax. Not sure

what i'd do without that one person.