spinner

I got to thinking---with chronic illness there seems to be a handful of faithful friends or family that stick with you. And then theres usually that ONE megafriend who went through a chronic illness, were told they had anxiety at first, and were told by everyone else that they "looked fine". So they actually get it, and they stick to you like glue, take you to the ER when you cant move at 2 am, bring you healthy food, and ask about your last test result for dysautonomia.

Im wondering how youre own percentages break down of the people that you THOUGHT were your friends, but to put it bluntly, by their actions they either seem to not believe you or they really just dont care.

For me, I'll say 75 percent dont care, and 25 percent dont believe it. And Im not attacking the 25 percent because until I went through it, there was a part of me that didnt believe in "chronic fatigue" types, people with "gut" issues, palpitation problems ('theyre just hypochondriacs).............much less a serious neurological or autoimmune disorder.

Whats your percentage break down to, or do you just have much better friends than I do? lol

Well, I've weeded most of those out.......or should I say they weeded themselves out of my life. This includes

family members btw.

Thanks for that distinction re FM and CFS.

I seem to be like you in that Klonopin is not addictive, nor does it give me a buzz of anykind. If anything, it can make me sleepy.

I realize that many people have gotten addicted to it and had a nasty time of it getting off it. It can also be dangerous mixed

with alcohol or going off "cold turkey". Very bad idea.

Fortunately each med seems to help us individually, which must unmask the truth of the correlations between autimmune,

neuro, endo, gastro, etc.

Physicians were confounded when i refused to use Ativan, lol, because at first i got the old "you have anxiety" **. But

when I refused meds, it got their attention. They see so many druggies in the course of a day.

I wouldnt be here without Klonopin.

I have no idea why Ativan acted like an adrenaline spike.

If I had that answer, I might have a lot more.

Its almost a crapshoot with many of these, trial and error.

1mg klonapin can be a heavy hit depending on your body weight. I imagine most people split them

in half, or do lower milligrams.

I first got sick 3 years ago, got into the medical grindhouse, and while looking for a "cure" was prescribed 5 meds that couldnt help me with my breathing problems including Ativan. I was desperate, because while feeling dizzy, weak, and brain fogged I could not really stand feeling like I had to work so hard to breathe. True memory-, one night in the ER I begged the Physician to put me to sleep so I could rest. Later I was able to rule out cardiac, blood, pulmonary, and endocrine problems.

After 4 months of that and a trip to Mayo Jacksonville (where i was still eating cheerios and milk everyday--bad idea b/c of sudden onset allergy to dairy and gluten) an older physician finally prescribed clonazepam. I finally had a shred of my life back with this sudden onset Dysautonomia and Sleep Apnea (I was to find out later) because I didnt feel practically panicked 24/7. Which naturally led to theories i was having panic attacks, except for later diagnoses of Autonomic problems/AI/Rheum. diagnoses such as heat intolerance, syncope, couldnt climb stairs, couldnt work, etc, bad adrenal function etc. The elderly Doctor that described Klonapin told me: Ive been around a long time but nothing compares to this drug for certain patients---its like the miracle drug aspirin in a lot of ways".

I got on the chronic illness forums (POTS, FM, Nervous System, HPA Axis, Vagus, MS, Inflammation, Autoimmune, etc) and noticed a strange correlation--a lot of people were made functional by its use. In fact, my wifes friend with MS had been on it for 25 years. Even famous docs like Cheney (FM pioneer) used it as a frontline drug against excitotoxicity. A benzo apparently it has universal value to calm--not cure-- many and varied ailments within the AI and Central Nervous Systems of many chronically sick people. And I started wondering- Why?

Im wondering what other theories are as to why it can be effective (although obviously prescribed cautiously and most times short term because its addictive for some, and very powerful) but wikipedia had the general statements:

1. drug having anxiolytic, anticonvulsant, muscle relaxant, sedative, and hypnotic properties.

2. enhancement of the neurotransmitter GABA via modulation of the GABA_A receptor

There are tons of other theories on why and how it works in the chronic category, but Im curious to hear your own. My own is pretty lame--that it simply calms the central nervous system from its condition of hyperstimulation from a multitude of causes.

***If anyone has any information on the interaction between clonazepam and norepinephrine, id be very interested, based upon the studies of vasoconstriction and sudden BP spikes:

When norepinephrine acts as a drug, it increases blood pressure by increasing vascular tone (tension of vascular smooth muscle) through α-adrenergic receptor activation; a reflex bradycardia homeostatic baroreflex is overcome by a compensatory reflex preventing an otherwise inevitable drop in heart rate to maintain blood pressure.

Norepinephrine is synthesized from dopamine by dopamine β-hydroxylase in the secretory granules of the medullary chromaffin cells.^[10] It is released from the adrenal medulla into the blood as a hormone, and is also a neurotransmitter in the central nervous system and sympathetic nervous system, where it is released from noradrenergic neurons in the locus coeruleus. The actions of norepinephrine are carried out via the binding to adrenergic receptors.

Bellgirl, yah, theres plenty of us that dont have all the classic symptoms-----i tend towards bradycardia so my problem is almost always a slower heartbeat. Ive had palps and pvc's but its more rare.

My blood volume was normal at cleveland clinic but sweating diminished.

I seem to have just about every other DA symptom. I know I dont have mast cell problems, but i just havnt been sufficiently tested for

the more advanced POTS blood tests.

My condition presents as much as anything like Lupus--but the CC ruled it out. In the end, rheumatology labeled me with fibromyalgia,

but we all know thats a symptom, not a diagnosis.

I find that my worst symptoms rotate. The past 8 months it has been EXTREME heat intolerance. Im talking about cannot tolerate

74 degrees. Any kind of harsh sunlight directly on my arms makes me go weak at the knees. I have late onset asthma and sudden

allergies to foods. Alcohol of any type makes me completely sick.

I cannot spike my BP suddenly or it will flare me for 24 hours and yet my blood pressure itself is usually quite normal, 120/80. Im an

anomoly, which is the bane existence of chronic disease. A lot of us here just want to be finally specifically diagnosed no

matter what it is. But its been 3 years, so Im certainly hoping that I wont have total DA failure but nobody really knows.

Believe me, Ive been there. Its as bad as it gets with this stupid disease. It has affected my ability to work, and to work out--having been athletic

my whole life.

I'll throw out the list of stuff I've invested/tested for and see if something sticks out?

1. humidity. breathing hot or saturated air takes more effort. A dehumidifier? COLD air is easy to breathe.

2. asthma. Many of us here have late onset

3. diet: allergies, late onset, eggs, peanuts, gluten, MSG?

4. muscular: are the muscles behind your lungs working?

5. meds: can slow breathing and heartrate

6. sleep apnea: have you had a sleep test--snore?

7. cardio: is your circulatory system working right? oximetry?

8. Lyme, anything infectious?

9. Virus

10. Leaky gut--causing autoimmune repsonse?

11. Hormones-- thyroid, dhea, adrenals? That can cause dyspnea

What triggers you? Is a question we all ask. We keep diaries. When symptoms worsen many times we can

trace it back to WHY.

Is it morning? Late at night? After eating?

I hope i can give you some thoughts, without advice, based upon experience. Im 53 which should sound ancient to you, but like most people I still feel 18 mentally, albeit DA makes me feel old sometimes.

1. Revealing medical issues many of have learned the hard way is a trick pony. Especially with chronic illness. Stuff like "you LOOK fine to me", etc. Or the "you have anxiety" stuff because they couldnt diganose you right away and dumb azz doctors were admitting they didnt know much other than how to prescribe drugs for a cold. We ALL know here a neurological specialist at Mayo has the same title as a chiropractor: DR. One may have graduated cum laude, the other barely. Doctors are frequently dumb, and mostly uninspired creatively. They are not "trained" to think outside the box. They operate on data, not intelligence.

2. Why would the man you love allow ANYONE to disparage you like that so disrespectfully? Its one thing for a mother in law,,,but again, that brings up another question. Is he too weak to stop her, doesnt care, or she runs the show? You MARRY the family, trust me, not just the person. Im wondering out loud to myself, why would my spouse allow anyone to speak to me like that? And if theyre doing it now, whats it going to be like in two years?

3. Dont ever "respond" to someone like that. Its better to act as if they dont exist, and i hate to say that but ive been there and done that. Theyre looking for an emotional outburst from you. Confidence is the key here. Youre BETTER than that, and you dont even need respond to it. You werent raised that way. The more that dingbat talks, the more she looks like someobody

on Maury Povich. Enough said.

4. Fight fire with fire. I know this isnt exactly biblical, but you will learn in life there are certain people who enjoy sticking a needle into a sensitive person. If you dont fight back, they keep doing it. If I was in that situation I might be tempted to say (after the third time they've done it) well, at least I..........wont be dead in 20 years............ dont look like the bride of frankenstein............whatever. You hate to do it, but if you up the ante big time, they get the message fast. Its a last resort but it works. Turn it around on them. "So youre saying things in your life turn out perfectly? Well how about ____________. Howd THAT turn out for ya" in an subtle tone.

These are things ive been forced into using, theyre not advice. I only use them when somebody decides theyre going to pick on me. And Im a big guy, 6ft, 225. People dont threaten me physically, so they resort to words. And with chronic illness, ive heard it all---"they havnt cured THAT YET"???? You learn who loves you real quick and who doesnt. And you may quote "turn the other cheek" however that was mostly to do with entering an earthly kingdom where all rule was absolute. You have to know how to defend yourself or they'll keep coming. NEver start it, but occasionally I've had to "finish it".

Yes Rachel, well im stubborn and wont admit I cant do stuff anymore. Not getting any younger either.

Used to be very athletic like many here. Hard to admit cant do it.

Better that than flare for 2 days.

My son's vitamin D level, a couple of years ago, got down to 7. He could barely get out of bed. He takes a supplement daily(2000 IU) and he saw improvement quickly.

my ex mother in law was down to 6 one time.

I had asked her about it before i knew that number.

She was quite stubborn, but i tried to help her get on oxygen, but she refused.

Its important that vitamin D, B complexes, magnesium and DHEA is mentioned here so people can check their levels. This seems to be a universal problem.

Ive been experimenting with DHEA for heat.

But in reading the literature many people are deficient in those two areas.

Sorry about your flare. Did anything outside your normal routine set it off?

Myself, i have to be very wary of diet, gluten, and MSG. They can set me off fast.

Another thing about all this is that-----many of us here dont have traditional POTS. We may have dysautonomia and related

chronic diseases.

Ive never had uncontrolled heartbeat/BP upon standing, but only upon exertion. But i have EVERY other symptom, confirmed sweating issues, the entire lot of problems.

Ive even got sleep apnea, and have been using klonopin for 2.5 years like so many people here. Seems to be the only

drug that works in the various nervous systems during a flare. And like Rich im constantly doing research looking for

these correlations that will lead to a final dx, and it would be nice to discover a cause too---although unlikely

Rich, you inspire us to all

1. be unendingly persistent in our research, diaries, etc

2. more of less become "our own doctors" in the sense that we are more likely to ultimately diagnose ourselves before they do since the battery of tests to determine an unending list of chronic illnesses is inumerable.

Who knows who can be helped by something someone here posts?

Ive been through rheumatology and been given the old "fibromyalgia" junk diagnosis that they give to

so many people who DO NOT have that.

My primary problems are breathing, heat, weakness. I dont have the traditional POTS. I tend toward sinus bradycardia, slowheartbeat. Cleveland Clinic at least found partial anhidrosis--sweating issues in a part of my body. Ive ruled out mast cell via bone marrow biopsy.

And supposedly they ruled of Sjogrens.

But you've given me something new to research. I certainly fit into the "late onset" aspects of these problems. Dairy was almost an

overnight flare.

I wish I knew if it was DA related. Ive always concluded it was POTS itself since that implies out of control cardiac upswings right? But with

disregulated autonomic, Ive read here and there that it could be a less likely symptom.

Ive struggled with it since i got sick, but didnt pay much attention before so i dont know the numbers. I DO know that one night in the ER they had to speed up my HR. Im VERY careful about hydration and heat. And yes i think the klonopin i use that helps with my dysautonomia slows it down some depending on how much had to use that day. Some days almost none, other days up to 2 or 3 mg.

I have all the other classic symptoms of DA INCLUDING palpitations, an increasing systolic bp during triggers, heat intolerance, dizzy, weak,

nauseaous, various neuromuscular issues, blood pooling, sudden onset allergies, heart PVC's, etc. etc.

I tend toward a slow heartbeat but it can get WORSE and then i can trigger into something more scary as you said. I keep potassium on hand high strength fro Dr., salt, power ade zero, etc for when the symptoms come.

Exposure to excitotoxins such as MSG and aspartame make it MUCH worse. I Avoid those.

I seem to be the exception to a lot of things in DA. I dont have POTS per se, i have sinus bradycardia, slow heartbeat. I tend toward dehydration. So i describe my condition as disregulation of autonomic/sympathetic neurology.

I can raise my hands over my head but I cant sing or climb stairs. I cant suddenly bump my BP. That triggers me instantly.

I take klonopin for a sudden trigger---its an amazing med for me.

Im certain that these triggers are related to our circulation system and this constriction aspect. Perhaps it also

triggers palpitations or a release of adrenaline.

Im very curious if anyone has improved this circulation constriction problem somehow. Maybe salt and water play a big part. Or beta blockers although i cant do that, already have a slow heartbeat.

Its possible to have an enlarged thyroid--i have one.

There is another condition known as laryngeal reflux. Usually affecting older folk but the

acid makes its way all the way up to the trachea and seeps into the lungs.

Might be worth investigating since you have breathing issues.

By the way, have you done elimination diet of gluten? So many of us have multiple chronic

problems.

It can go something like virus- leaky gut- reflux- apnea- DA - asthma -- hpa axis, etc etc etc

I havnt done enough studying on circulatory constriction and DA. Ive heard the theories but I dont understand the

science. Im hoping somebody can explain it.

THIS MORNING: I foolishly carried an air conditioner up TWO flights of stairs. Major no-no. Knew I triggered something nasty. Breathing problems all day. Exhausted dizzy weak. Some palpitations at the left side of my heart. A few angina

pangs that i get occasionally.

Can anyone explain specifically whats going on with out circulation, blood vessels, and why it wipes us off the map

when we go "Under a Load" so to speak?

I have no trouble riding a bike or swimming incidentally on horizontal surfaces or even some inclines. But when i put a severe load on my body combined with carrying something heavy im toast. It will be a couple years before i do

something that stupid again.

Please post any previous links to articles here if you know them. Blessings.

I havnt done enough studying on circulatory constriction and DA. Ive heard the theories but I dont understand the

science. Im hoping somebody can explain it.

THIS MORNING: I foolishly carried an air conditioner up TWO flights of stairs. Major no-no. Knew I triggered something nasty. Breathing problems all day. Exhausted dizzy weak. Some palpitations at the left side of my heart. A few angina

pangs that i get occasionally.

Can anyone explain specifically whats going on with out circulation, blood vessels, and why it wipes us off the map

when we go "Under a Load" so to speak?

I have no trouble riding a bike or swimming incidentally on horizontal surfaces or even some inclines. But when i put a severe load on my body combined with carrying something heavy im toast. It will be a couple years before i do

something that stupid again.

Please post any previous links to articles here if you know them. Blessings.

Have you tried breathing excercises?

Also confessing logical thoughts out loud can help.

"ive had this before many times and i'll have it again. But i made it through fine last time no problem"

We tend to panic when we lose all control of something, but the only good thing about DA is that

its repetitive and therefore predictable

Good idea. We all have tricks that bring us back from the brink or prevent a trigger.

One of my is my oxygen concentrator. 20 minute on that helps.

53

were you checked for laryngeal reflux or acid reflux?

Hi everyone. Do any of you have chronic cough. I have chronic cough for a year. Had pulmonary ct scan, pulmonary tests, and methacholine challenge test (to check for asthma). All negative. Also, had skin allergy test done and nothing. Have been checked by ENT doctor and all he saw was a little redness of my vocal cords, so was on Nexium for acid for 2 month, but still cough. Its driving me crazy. Sometimes i feel like i have to cough to get my air out. Also, sometimes feel stabbing chest pain when I inhale deeply. Pulmonologist doesn't see anything wrong with lungs or bronchus. ENT doctor recommends to do bronchoscopy, but I do not understand whats the point if I had pulmonary ct scan done and there was no obstructions.

Im so sorry youre frustrated, all you want is a diagnoses, and a cure.

I definitely demanded breathing tests, normal, at mayo clinic.

The problem is that the "RESULTS" dont indicate your level of exertion to get enough air.

You could be at 99 percent saturation with a normal heartbeat. But how hard are you struggling to breathe?

This can become an issue in very rare conditions such as guillame barre. I may have spelled that wrong.

Ok, so some of this stuff SOUNDS like a cheesy miracle cure for "chronic" illness. But I'm intrigued by the theories and in particular the holistic integrated approach of leaky gut syndrome. For one thing it addresses the hpa axis, and also the fact that these fungal bacteria or parasites can virtually take over parts of your circulation system.

And we all know that much of our struggle comes from disregulation of our blood vessels etc. as well as blood pooling, etc.

I want to try it because I believe that leaky gut is one of the most common, if not THE most common cause of chronic disease alongside deficiencies such as magnesium or dhea or d3. These issues also cause allergic reactions and the release of adrenaline among many other issues.

And who's to say that a bacterial fungal explosion in your system isnt the "trigger" that many people are trying to track?

And who's to say it doesnt cause other diseases such as guillaine barre? Which is described as usually caused by infection. Or mitochondria?

Anyone had any luck whatsoever with one of these cleanses? Or improved dysautonomia by improving leaky gut?

Sarah, the thing of it is, from what i know not everyone has classic POTS. I tell physicians i have dysautonomia which i describe as uncontrolled automatic nervous system issues. Grubbs calls it like having a perfectly functioning

furnace but a faulty thermostat from what i hear.

I tell other people now that i have a neurological disease where my involuntary cardic and respiration are not controlled.

As far as heat, if youre in buffalo be thankful. Mainly because the summers are short. You can function in the other 9 months but summer is scary. My worst fear is getting stuck in a traffic jam without air condtioning because within 5 minutes of overheating i get pre syncope. I would become very sick very fast.

DA is incredibly infuriating because it seems symptoms change overnight. This whole heat thing was never as bad as this year. If its over 72 degrees or 60 percent humid i cannot function. Unless theres a good bit of air moving.

The ironic part of this is that in winter people blast natural gas heat indoors and that saps me as bad as the sun.

I spend the summer inside and the winter outside.

Im currently experimenting with DHEA and potassium. It seems to help some but doesnt eliminate heat

intolerance.

I also swim which cools my core temp down. Doctors dont seem to understand that its NOT your base temp

that matters with DA-----its your organ temps.

maybe a treadmill at home with someone right there is best before you attempt

running???? Just a thought.

I always err on the side of caution.

For example, i never excercise when its hot, i wait for dusk.

I walk uphill, often walking with a bicycle in case i need to coast home.

We need to really know our symptoms and triggers, and be in our best condition that is possible

before attempting anything more challenging than we're really prepared for or dont know

how will turn out.

Not giving advice, but following how i do it.