IDreamInColor

Yes, I had a tilt test, but I had been on fludrocortisone for 3 weeks prior to the doctor running the test. The fludrocortisone made my blood pressure behave while on the table, however I did experience myoclonic leg jerks, and a nauseous hot flush. I have no idea why the doctor didn't run the test before he put me on fludrocortisone. The doctor diagnosed the dysautonomia just after the test.

I had the test at the end of September, I have declined quickly since then and I have no doubt whatsoever that I would definately pass out if I were to do the test again.

The symptoms all seem so similiar with the various forms of dysautonomia. My doctor diagnosed me with dystautonomia, and when I inquired on which form he said it was "probably" pots.

How can they know for sure? All the symptoms seem so simiiar. With my intense myoclonic jerks I'm thinking it's something more than POTS, because not too many of you people with POTS seem to have these jerks.

UGHHH< I need Dr House,,,LOL, he'll make me cry, but at least he'll figure out whats wrong with me

I have heard mention of some of you having adrenalin surges. I am wondering if maybe what I'm experiencing might be adrenaline surges. It's a strange feeling that consumes my body but only lasts a few seconds. It starts with instant nausea, and then a strange feeling in my head, and then a strange undescribable feeling runs up my back and thru my head. Could this be adrenaline surges?

I have an appt coming up next week, and since my recent diagnosis I have learned their are many forms of dysautonomia, as well as possible underlying causes.

Are their any tests I could ask for that might help determine anything of significance in helping to pinpoint exactly what I have?

Thank you so much, you all have been such great support, and I'm so glad I found you.

Potsgirl, yes, my jerks have become more severe also. They started 6 years ago, but they just came occasionally, and sometimes I would go weeks without any, I didn't think much of them at the time. But this past September I was diagnosed with dysautonomia and the jerks have become severe. They happen all day long, and are becoming more violent. They used to only happen to my legs, now they are full body. I don't have any meds for it, I don't even know what people take for it.

I know dysautonomia affects everyone different, so I'm curious on what your top three worst symptoms are? For me it's the debilitating weakness, the dizzyness in my eyes and in general, and the nausea.

The symptoms that I have most often is the myoclonis jerks, however, those don't hurt or anything, so it's tolerable, just embarrassing.

First question..are we at risk for blood clots forming due to the orthostatic stuff? A few days ago I experienced a pain at the very top of my leg, groin area, the pain was centered at the groin, but traveled thru my lower abdomen and down thru my leg. The intense pain let up, but now i'm having very minor pain right in that groin area, it feels like vein pain, if there is such a thing. Its really making me nervous about moving about much,,not that i can anyway, I'm mostly bed bound right now....I just can't help but worry.

I have had myoclonic jerks for about 6 years now, but when I got real bad and diagnosed with dysautonomia this past September the myoclonic jerks became severe. Some days I jerk all day long, and other days just here and there. In the past month the dysautonomia has become severe, and I am unable to stand for more than 5-7 minutes. In the past few days I have noticed that any time I stand for a few minutes the jerks get very severe, standing is triggering the jerks.....is this normal for dysautonmia? And for that matter, are myoclonic jerks common with dysautonomia?

Just trying to figure out why the doctor put me on such a low dose of the paxil, he started out with 5mg, then bumped it to only 10mg, are lower doses more helpful than higher doses when it comes to dysautonomia?

I'm just curious how many of you have gotten better, gotten worse, or stayed the same?

I keep reading where exercise is important for people with pots, but I'm wondering where you all find the energy to do so? I have been incredibly weak, and can't stand up for more than 7 minutes without problems. I noticed some of you here walk, how do you not pass out while walking? Just bringing a load of laundry up the steps shoots my pulse to 160, I imagine exercise would shoot it way higher, and I must admit I'm afraid of that. Am I just being a pansy? Do I need to put my combat boots on and do it anyway? lol

Two nights ago I was having a really bad day, I had another meltdown and started crying, and then I got mad at this disease and at that moment I wanted to put my shoes on and take off down the sidewalk, and just walk until I passed out,lol I didn't of course, but I sure wanted to.

How do you do it?

When I was diagnosed by my cardiologist, he said I had dysautonomia, I then proceded to ask him if it was "pots", and he said "most likely." But thats not good enough for me, I need to know if I have something underlying such as shy-drager, or pure autonomic failure, or any of those. I have also realized I need to take this into my own hands and and this is where you wonderful people come in.

I will be seeing my cardiologist on the 3rd, are their any particular tests that I should ask for that might be helpful in determining what I have. I have also been reading about mast cells and I think it might be a factor here based on all my diagnosis's and symptoms.

Also, I am located about 20 miles west of cleveland Ohio, does anyone happen to know of a dysautomia specialist in this area?

I'm kinda feeling lost and don't know where to start or what to do. Everyday brings more and more symptoms and worsening of my current symptoms. I had another meltdown today and I'm having trouble "getting a grip." This is no way to live, I stopped living in 2005.

Im having a really bad day and whenever i get this bad i run a low fever, like 99.5. I normally run 97.6. Is this a normal thing with pots?

This could be another piece to my medical puzzle,lol Ok...so last year I became very ill with diarrhea, and please forgive the graphic details here, but I feel it's important in my case and trying to figure it all out. I'll call it "D" just to try to lighten the word here, because I'm sure you all don't want to hear about this,lol

Anyway, the D started a year ago, came on suddenly, and I am not exaggerating when I tell you that I spent 6 solid months in the bathroom, expelling water up to 12 times per day, I was extremely weak, and did not want to eat, and nothing stopped it. After many tests I was diagnosed thru a colonscopy with biopsies as having something called "collagenous colitis." From what I understand it's not much more than inflammation in the colon.

Which is why I am connecting it with pots...I mean if gerd, which is also inflammation is caused by pots, couldn't collagenous colitis also be caused from pots?

I seem to have inflammation all thru my body, I have been diagnosed with...collagenous colitis, chronic sinusitis, gastritis, gerd, and pots. What roll does pots play in inflammation thru the body?

Again I do apologize for the TMI information, I'm just trying to figure this whole mess out.

I was diagnosed with gerd a few months ago, before I knew I had pots. I've noticed quite a few of you have mentioned having this as well, is there a connection? Why would pots cause gerd?

I'm glad to hear I'm not the only one with this problem, although I dislike you all have to deal with it also. And Katy you described it perfectly, I'm going to write that down because I've been trying to explain what it feels like to my doctor and I never could find the right words.

For me it lasts for days on end, sometimes over a week, and then I'll get a day or a 1/2 day break from it, but then it comes right back. And it's always worse in the evening time and when I'm tired.

I don't even know if this is related to pots, or what is happening. It's hard to describe, but i'll try....if you can imagine your eyes being dizzy, different from head dizzyness. It's like the muscles holding my eye aren't working propery, when I shift my eyes to look at something it's like they are shifting quick enough. I also have alot of pain behind my eyes, like a headache in my eye. And lately my vision is becoming blurry.

Does anyone else have these problems? Have you found anything to help alleviate it? Is this a pots thing?

Thank you

Hubby mentioned running to the store to find me some compression stockings. I have no idea what they look like, how they are sized, or what size I should get, or even if this is something that would help? Anyone?

I was just at the Cleveland Clinic website who apparently has an autonomic center, and this was on their website

"

What is the prognosis?

The outlook for patients with dysautonomia depends on the particular diagnostic category. Patients with chronic, progressive, generalized dysautonomia in the setting of central nervous system degeneration have a generally poor long-term prognosis. Death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest in such patients."

What does that central nervous system degeneration mean? Can someone please elaborate on that?

The doc had me on florinef, but took me off it when my blood pressure was staying too high. He then gave me a prescrip for proamatine which I never took because I was afraid of raising my blood pressure even more. My blood pressure has been ok, for some reason its decided to stay pretty normal lately it's been hovering around 127/85,,but my pulse is going crazy everytime I stand up it shoots way up.

So my question is...was I right in deciding "not" to take the proamatine? What medications do they try when your blood pressure is behaving but your pulse is not?

Tarastomsgirl, that would be awesome! You can email me directly when you find out at Wilow33L@aol.com if you'd like

I'm 45 yrs old now and looking back I believe the dysautonomia started very early in life. As a little girl I had quite a few bouts with anxiety, to the point of actually running off the school yard, crying the whole way home.

By 7th grade I was having aura migraines, and extreme weakness and fatigue, lightheaded, and blacking out during excersize. By 10th grade I was admitted to the hospital because I was feeling so unwell, the only thing they found was protein in my urine.

In my 20's the anxiety was becoming severe and the fatigue continued. In my 30's I quit my job due to panic attacks and extreme fatigue. At age 39 I was diagnosed with graves disease.

I was hospitalized in 2005 because I had become so weak, barely able to eat, losing weight, hair falling out, extremely weak, tremors, couldn't get out of bed, and having very scary flushing feelings consume my body, etc. Their diagnosis was of course anxiety and they prescribed paxil and sent me on my way.

August 2010 I was diagnosed with microscopic colitis, I spent over 5 months expelling water up to 12 times a day, everyday. I quickly became very weak. I was put on entocort which helped get that under control. A few months later I was diagnosed with gerd as well.

August 2011 I ended up in the ER due to vertigo, while at the ER my blood pressure dropped to 70's over 40's, and my body wouldn't stop shaking. Their diagnosis was dehydration. They held me for 2 nights until my blood pressure improved.

September 2010 the nausea was fierce, and I'm feeling a huge list of symptoms. I had a major breakdown because I couldn't take another day of feeling so ill. I drove myself to a different hospital and was admiited for testing for 5 days. While at the hospital the doctor prescribed fludrocortisone. Two weeks later the doc ran a tilt table, and while I didn't pass out (probably because I was on fludrocortisone) I did become very shaky, sweaty, and my legs started jerking uncontrollably. It was at that point he diagnosed me with dysautonomia and put me on paxil 10 mg.

So here we are now and I'm continually getting worse. The jerking in my legs is happening all day long and has gotten worse. I feel extremely weak, nausea, daily headaches, tinnitus, tremors, shaky, no appetite, chest pain which is getting worse, I've lost 50 pounds in the last year. I can't seem to stand up for longer than 7 minutes without problems. And the list of symptoms goes on and on.

Last night I had a meltdown, I'm finding it more and more difficult to live feeling like this, I spend most of my time in bed, too weak to get up, I am grieving the person I used to be, and I'm losing hope that I will ever feel better. Will it ever get better? Is this how I will have to live for the rest of my life?

If I was feeling better, I would totally commit to that.

I found this video on YouTube which does a wonderful job of explaining the syndrome in depth, and tells what it's like to live with it. Since the video advertises Dinet at the end I was wondering if anyone might happen to know if it's possible to obtain a copy of this video on disc, I really want my family to see it to help them understand.

Here is the video

http://www.youtube.com/watch?v=Fx688XLvA8k

Thanks so much