julieph85

Hi Rich, this is what I've had: Cardio- ekg, stress echo, two week event monitor: all were normal except the tachycardia episodes but no explanation for it neuro- CT angiogram, mri, tilt table, baroreflex test, heart rate variability test- all abnormal but not specific for any known autonomic disorder (according to that doctor) endo- thyroid, aldosterone, cortisol, chromogranin A, tryptase, metanephrines, urine catecholamines, glucose tolerance test, insulin, 5-HIAA: all normal nephrologist- ultrasound of kidneys, cpk, creatinine, bun, proteins- all normal rheumatologist- ana, ccp, ss-a, ss-b, cardiolopin antibodies, cbc, metgabolic panel, urinalysis, rheumatoid factor: ccp positive, rheumatoid factor positive, ana positive: only new find was the ana, I already knew I had rheumatoid arthritis (ccp antibodies) psychologist- positive for generalized anxiety disorder pulmonologist- sleep study, ENG,= all normal, he would not check my lung function cause my oxygen saturation is normal

Sue, I've had the antibody tests for Celiac but not a biopsy. I need a colonoscopy very bad because I have horrible IBS/Chron's like diarrhea and constipation for the last 4 years. I'm so scared though to get the colonoscopy because of the propophol and not knowing what is causing my dysautonomia. I'm scared i'm going to have a tachycardia or BP problem during the procedure. But.... my gastroenterologist says i do need one, but he doesn't think i have celiac cause i don't have the antibodies. He thinks i have IBS or chron's, especially cause my dad has chron's and i have other autoimmune disorders

Rich, but they do dialate the deep muscle vessels, that's parly what makes them lower bloodpressure. Their effect changes depending on which muscrinic fibers they are working on

Sue, that is very interesting stuff. I thought for sure I had a pheo because of how similar my symptoms are to it but my 24 hour urince catecholamines always come back normal. My interpretation of this is that I must be over sensitive to the catecholamines instead of producing too much. Almost like I have alpha andrenergic hypersensitivity or something. I was put on labetalol when my symptoms first started. I didn't notice an improvement in my orthostatic intolerance but it did lower my bp. It tended to lower it too much at night though and I would get really low bp with bradycardia.

i was put on a metropolol ( a tiny dose by the way) when my symptoms first began. It made my orthostatic hypertension, chest pain, and dizziness soooooo much worse. It made me feel like I was in a constant adrenaline rush even from moving my muscles slightly. Why does it make things so much worse for some of us but helps others? I have orthostatic hypertension so you would think I would be in a the group it would help....I read something from Grubb that it causes unopposed alpha blockade as well so that could cause the hyper sympathetic response.... anyone else have thoughts? i feel like it is a key to the cause of the illness for some of us.... thanks!

rama, i agree. salt does nothing for me, but carbs help tremendously.

I also have Sinus tachycardia which my cardio says is the "normal" kind because it is coming from the correct place in your heart. when not flaring: laying: 70's sitting: 80's standing: 90's flaring: laying: 70's sitting: 90's standing: 100-120's

ramkentesh, I have heard that about the low BP in the morning as well. Interesting though that I suspect i have hyper pots because i have orthostatic hypertension but my BP is always the highest in the morning and gradually decreases throughout the day... i wonder if the low bp in the morning only applies to the people who have orthostatic hypotension...

is your morning urine yellow? If it is it is likely not DI. With DI all your urine is chrystal clear throughout the day and night.

ramakentesh, I could not agree with you more. I have had RA for 6 years and this new illness reminds me so much of it in the way it flairs and goes into remissions. You can't argue that fact or the fact that it can be triggered by pregnancy (which is what happened in my case) or a virus. Pregnancy is also what caused my RA 6 years ago! I absolutely believe it is an inflammatory autoimmune process.

Hi Naomi, yes my rheumy doesn't put much wait in Rheumatoid Factor because like you said it can be both positive or negative and is not indicative of the presence of any specific disorder. My rheumy says the only thing it is really a marker for is how severe your particular disorder is. Usually if you have a positive RF it means your rheumatoid arthritis is more severe. ANA is also very general but is more common in certain disorders like Lupus. There is a specific antibody test for sjogrens (SS-A and SS-. Has yours been tested? I had a positive sjogrens antibody test 2 years ago but it is now negative. It is common to have sjogrens with RA so my rheumy didn't think much of it. My antibody titer was also low so it's unlikely the sjogrens would have caused the dysautonomia. Do you have problems with dry mouth? I doubt I have sjogrens because i actually usually have an excess of saliva...

When I first wake up I always notice i'm extremely thirsty and my mouth and eyes are very dry. When I first sit up in bed I feel lightheaded but usually stops after a minute or so. When I go to stand up I intstantly feel short of breath and I get a sudden pressure in my chest and head. My heart rate also goes up suddenly. These symptoms usually dissipate once I start walking around but the dizziness/lightheadedness stays no matter what unless I lay back down. I usually feel a little better when I first drink my coffee but then the jitteryness sets in about 10 minutes after and I feel like I'm on speed. Interesting to note- if I don't drink the coffee I get presyncope and almost faint even while sitting so i obviously need the coffee to constrict my vessels even though it makes me feel anxious! The morning then progresses to where i'm drinking water constantly, peeing constantly, and feel like i've drank a gallon of coffee even though I only had that one cup. Once I eat my morning yogurt the real fun begins- flushing and tachycardia that lasts for an hour and then I feel like a thirsty zombie! Mornings ****!!! Oh, and the dizziness progresses all morning till about 11 am when it is at its worst then gradually lessens throughout the afternoon till the evening when it usually ends, but of coarse by the evening I then have the horrible headache that started after the morning yogurt!

I agree Todd! and i also get eophageal spasms by the way, it hurts!

i'm not taking any

If it is DI that would likely explain your POTS. DI is usually a differential diagnosis workup because the symptoms are so similar.

does anyone else's gums bleed as a result of their disorder? Mine never bled except a little while brushing but since i've been sick they bleed so easy, if my tongue even puts to much pressure on my upper palat my mouth will be full of blood. Not to mention how bad it is after i brush... even eating a peice of toast cuts up my upper palat so bad it will be soar and raw for days and bleed. I have never had a cavity and take good care of my teeth so I don't believe it is gingivitis.

Hi emma, he was quoting me. I call it lactic acid pain cause it feels just like that- you know how your arm hurts real bad if you hold it in the air too long? I get that feeling in my face, chest, upper back, and arms. I've also noticed my muscles twitch and tremmor from even a small amount of activity. The other night my arms and face burned so bad just from holding my kindle up in bed to read it.

I have had RA for 6 years. My rheumy has taken my blood every year to check my anitbodies. Before I developed this severe dysautonomia 2 years ago I ALWAYS had a positive CCP (specific antibody for RA) and positive Rheumatoid Factor. I NEVER had a positive ANA. When my symptoms were at their worst 2 years ago my rheumy re-ran my antibodies and they came back that I had a very high ANA (1:1280) as well as my usual CCP antibodies. She thought that was odd. Last spring my dysautonomia was at an all time low and my symptoms were greatly improved. She re-tested and my ANA was negative and my ususal CCP was positive. Here I am very sick again in a bad "flare" of whetever is causing this dysautonomia and my ANA is very high again (1:680). I think this is not a coincidence and points to my disease being auto-immune in nature. Has anyone else experience this same thing with their ANA? Also, what antibody tests could dr.'s do to find out what autoimmune problem this is? I'm testing negative for sjogrens and lupus....

This same thing happens to my legs, especially if i'm walking outside in the cold. They will itch horrendously and turn bright red, also has happened to my hands if i'm wearing gloves. i think it is blood rushing to the capillaries..

sounds to me like you had a massive drop in blood pressure. That can cause sweating and nausea. Did you take your BP when you woke up? Metropolol gave me very low BP at night. I would bet it was a side effect from one of your meds...Also, I agree with Brethor9, adrenaline surges can cause me to shake violently in my sleep. I hope you feel better and know how you feel. i wake up sometimes with horrible tachycardia and dizziness. It also makes me scared to go to sleep. Lately i've been getting terrible waves of pressure in my head when trying to fall asleep so even though I want to i can't. I really feel for you.

momtoGiuliana, with either your hashi or your pots do you experience upper body muscle weakness? My muscles are so weak they burn with lactic acid pain even from doing a minor activity...

I have all of your symptoms to a T. Especially the arm/upper back neck pain and weakness. my muscles are so weak they burn from lactic acid pain just trying to read a book. I've never been given a diagnosis of Fibro but I have RA. I'm also going to see Dr. Goodman next month!

Since I've been sick for the last two years I have researched the crap out of my symptoms. I always come back to the same diseases. I'm thinking there is a connection if we all keep looking at the same things. My tests always come back normal. What is the missing peice we have here? Diabetes Insipidus RAS problem Pernicious Anemia Hyper/hypo thyroidism carcinoid MS I have also noticed that several women on here also have Hashimotos. I have RA and test negative for Hashi antibodies but my father has hashimotos and his started with almost the same symptoms I have. What is the connection between the Hashimotos and the POTS? It is undeniable that our symptoms almost match exactly someone suffering from thyroid disease. Especially the hyperandrenergic response and fatigue as well as symptoms after eating as well as the dirunal (worse in the morning) pattern of illness. I guarantee almost everyone on here has had their thyroid checked a million times. I just can't let the thyroid thing go, I feel like there is something to this, it feels so autoimmune endocrine to me...

dani- no i haven't. my dr gave me an antibiotic but i stopped taking it because it hurt my stomache real bad. Are the steroid sprays stimulants? I can't handle any type of stimulant because of the tachy i get.

My TSH runs borderline low, usually about .50 ,when i'm in a flair my free T3 also tends to be low and my free T4 is in normal ranges.