Mary, Mary, Quite Contrary, How Does Your Symptoms Go?

[all4family]

I know we all experience our symptoms quite differently and in many different patterns. I thought it would be interesting to see how different, or maybe even the same we all are.

Ok...when I tried to vote in my own poll I fit more than one catagory ! So I have made them all multiple choice. You can check more then one if it applies to you.

[janiedelite]

Great poll! The Mayo doc says my POTS was probably triggered when I had mono at the age of 32 in 6/06. I was fatigued after the mono (of course ) but didn't notice POTS symptoms til 10/06 while I was working as a nurse and felt horrible one day then almost passed out. I put myself on a monitor and my heartrate was 160. Went to the ER... yadayadayada...

During 2006 I noticed more fatigue, especially after meals, accompanied by high heartrates. I also developed mild perniosis (frostbite) that winter that lasted 4-6 weeks, even though I spend most of my time indoors. The next year, the fatigue progressively worsened and the perniosis lasted 4 months and caused chilblains, purple toes, blue feet, and no doc could really help me. That winter, my feet also began to burn and get red and itchy at night.

Then in 6/08, the burning feet returned 24/7 and spread to my hands, face and mouth. It now affects my whole body. I've been officially diagnosed at Mayo with small fiber neuropathy, which the doc there says is what caused my POTS. He says it's probably post-viral. However, my mom and brother came down with rare neurological diseases in their 30's, and my mom also has small fiber neuropathy with no known cause. Personally, I think there are genetics involved.

And, I thought that post-viral POTS cases usually has a more sudden onset? Mine has slowly gotten worse. I was able to work for 6-7 months after the first tachycardia episode in 10/06 but have too much fatigue, brain fog and pain to work anymore. I wonder if the trauma of mono 6/06 and then being in a bad car accident 9/06 triggered something in me that caused POTS?

[all4family]

Hi Thankful,

Thanks for sharing that! I was also 32 when my symptoms started. At first I remembered only the first night it started, and thought it was a fast onset. But when I first started trying to figure out what was wrong I remembered that I had gotten the flu shot about 6 months before that first night. After this I started having what I called heart spells. My heart would just feel like it was doing gymnastics in my chest. Then about 2 weeks before the first night, I was outside in the evening, and when I came in I had something like 15 mosquito bites all over me. (I later looked up the information, and that was the year that West Nile Virus was the biggest in our county. I think it was the next day I had an episode like side to side whiplash on my neck. For the next couple of weeks I had a few of the heart spells, and then I almost passed out 3 times. I was walking on a treadmill, and it has a heart rate monitor on it. I took my heart rate in my first 5 minutes of walking, and it was 190. Then when the first episode happened that I went to the ER for They said I had a slight fever, and my blood work showed I was fighting virus of some sort. But it never went away! My father also used to faint. The reason as far as we knew was attributed to low blood pressure.

It seems like maybe multiple things may be at play in people with the genetics to predispose them. I always wonder if I had done just one thing different would I have ever had this happen?! But I guess I'll never know!

Suzy

[Ernie]

Hi,

I am getting worst as I get older and I know I will never get cured because it is genetic.

[iheartcats]

I think mine was viral. I was healthy enough growing up (asthma/allergies/etc but not fainting and things).

I had a severe flu and went downhill after that. I do wonder if a couple good viruses get those of us who are pre-disposed genetically to this stuff. I know my mom has symptoms (she's in her 50s and won't fully admit it - my sister tries to corner her and take her heart rate!).

I assume it's like other diseases that have genetic predisposition to be triggered: cancer, heart disease, diabetes, etc.

My big question. Those of us who don't seem to have this as a progressive disease...is there really a chance to get better? I'm losing my hope and lately I've not been as 'on' for taking my medicine (cut down Midodrine to 1 to 2 times a day, not taking Mestinon). I really hate depending on drugs. :/ That's just me. But it's just helping the symptoms. I need to feel better to do things so I'll get back on the medicine bandwagon soon, I've just been frustrated.

Interesting to see how this bothers a lot of us daily but we seem to just adapt. I guess that's all one can do.

[jump]

I had vague symptoms all my life, with a marked increase in symptoms when I developed anorexia -- but, I had an eating disorder at the same time I started growing tall/going through puberty, so I don't know if the physical trauma of the eating disorder triggered the increase in symptoms, or if it was something that would have inevitably come with adolescence (since a lot of people experience onset during adolescence). Since the noticeable increase, my symptoms got slowly but steadily worse over time, even after I recovered from anorexia and stopped growing. Then for about the past year they've seemed to taper off and stay the same -- but that could be because in the last year I started medication and serious life-style changes.

I like to think maybe someday my symptoms will improve, but practically speaking they've been bothersome for well over a decade now, and serious enough to interfere with my life for over five years now with no real improvement. So I'll feel pretty lucky if I just don't get worse!

[ramakentesh]

'I am getting worst as I get older and I know I will never get cured because it is genetic.'

What exactly is the genetic cause of your POTS? Faulty Norepinephrine transporter protein?

Then perhaps you might be interested in this study:

http://circep.ahajournals.org/cgi/content/abstract/1/2/103

This demonstrated that in POTS patients with faulty reuptake of NE, their symptoms were caused by disfunction that went BEYOND faulty NET expression. Perhaps the faulty NE uptake is a consequence, rather than the cause of POTS.

i was one of the patients involved in this study. I had very little NET protein and it was theorized that this was due, not to a genetic fault, but hypermethylation of the gene promoter for this gene. However, the jury is still out on this theory. It could also be possible that the NET protein is subject to an autoimmune attack, or that its just a consequence of other problems.

As an example, Dr Julian Stewart believes the excessive sympathetic overactivity and elevated E and NE levels in some POTS patients is caused by high levels of Angiotensin which is a potent stimulant for the Sympathetic nervous system, as well as decreasing the bioavailability of nitric oxide, leading to excessive vasoconstriction in response to orthostatic challenges.

If you have Hyper POTS why do you faint? Why do you experience excessive blood pooling? If NE was excessive it would result in whole body vasoconstriction which would help POTS. Unless the carotid vasoconstriction is so excessive that it reduces blood flow to the brain.

There are studies that have demonstrated that certain chemicals improve NET expression and NE turnover. As an example:

http://www.biomedexperts.com/Abstract.bme/...omocytoma_cells

Also even if they cant fix the faulty NE reuptake and it is proven as the cause of POTS in your case, they may be able to mediate its effects through the use of chemicals that increase the bioavailability of nitric oxide, leading to improved circulation. But the jury is still out on whether there is even a form of POTS caused by faulty NE reuptake.

[ramakentesh]

Most patients with POTS experience waxing and waning of their symptoms. Some are progressive and some experience spontaneous recovery according to older studies.

Some theorized that the onset of symptoms was an indicator of how the condition develops or improves over time. But this is more guesswork than based on scientific fact, since the causes of POTS are - with the exception of the blood pooling leg form - very much still contentious.

[Ernie]

Hi Ramankatesh,

I don't have the NET genetic mutation. My family and I have another type of genetic mutation but the researchers have not found it yet.

I faint even if I have hyper POTS because I have severe vasodilation when I stand up and this is why my blood pool.

The researchers don't know our etiology yet but I am sure looking forward to find it.

I am meeting my family's researcher this coming Monday and hope to learn more about what is wrong with us.

[Sunfish]

definitely interesting. though based on my familiarity with forum posts (and the folks posting them ) i can guarantee that even within the "same" category/ designation/ choice (on the above poll/ survey) there is still a LOT of variation. NOT something that i'm saying to in any way criticize the poll or its options - i'm impressed that you were able to break things down as well as you did! - but just a reality check from someone research-minded before anyone jumps on the "wow look at how so many of us ______________." in other words, while interesting & not by any means worthless, it would be easy to quickly glance at the results (numbers, percentages, etc.) & make more of them then what they actually say or represent.

b/c symptom reporting is so subjective it is very likely that some with far fewer &/or less severe symptoms who are new to living with illness (& thus haven't yet learned to adapt as well as possible) would report their day-to-day symptoms as being far "more severe" than someone with the same symptomology who has learned to live as well as possible with said symptoms & limitations for years on end. and of course the same could be the case (aka that they would report their severity quite differently) even for two (or more) people with the exact same symptom profile, length of illness, etc. solely b/c of the mere fact that we're all going to report our subjectively realities a bit differently. similarly the definition of progression encompasses a vast realm of illness severity as getting worse "slowly but surely" could for one person mean that what used to be occasional symptoms is now some degree of fatigue 24/7 while for another the same REPORT of illness progression could encompass a "slow but sure" deterioration of every system of the body to the point of beginning signs of organ failure. etcetera and so on. i'm sure you get my point. my intent is certainly not to nauseate anyone with statements of the obvious but having witnessed some past polls with folks got overly excited about "findings" to the point of wanting to send "results" to researchers, etc. i just figured i'd get on my soapbox before that happened rather than waiting until after .

all that aside, though, it's certainly still interesting - and in my opinion, at least - worthwhile to explore the issues encompassed & raised in this poll. though it may seem hard to believe for any of you who are new to the world of dysautonomia, with all the unknowns that still exist there is actually far more knowledge & understanding now than there was 12 years ago (when i was first diagnosed) and i am confident that someday there will be far more understanding than there is now. certain similarities (&/or differences) reflected in the above poll (amongst other things) may become key in categorizing (&/or diagnosing &/or treating &/or understanding the course of) any number of "sub-sets" of dysautonomia that may or may not fit within our current understanding & categorization of & within NCS, POTS, OI, PAF, etc.

melissa

[all4family]

Thank you everyone who has answered the pole so far. It is very interesting to see. I can see the first several questions may not even have been needed!

Melissa, Thanks for the advice. It's well taken. I am not really interested in a "medical" study. But more how this disease affects someone on a personal level. (I've had plenty of "medical" people to tell me how I feel!) And I did consider just the point you made that everyone's input would be of their view of their symptoms. But that was what I was more interested in. Their view. There are many tests to measure ones disease's and levels, and numbers, but that doesn't give us a bigger picture of how this is affecting ones life. And really if one person has say a severe headache, and the other has say a mild one, but they both view it as a five on a pain scale, does that change the pain to either person? And how do we measure ones pain anyways? The only real measure is by how they say they feel. I love when you go to the ER, and they ask you to rate your pain. What if I handle pain well? And get ignored? Or what if I don't and get emergency treatment I may not need. I guess what I am saying is that I have heard medical facts, and looked at symptoms lists for the last 5 years. But nothing makes me feel better then when I come on here and say "does anyone have this?" And I get "yes. I get it all the time. Don't you hate it?" Then I can just breath a sigh of relief, knowing I am not alone. And no medical study can give me that. That is why this sight is so valuable.

And really many of us, if not most of us on here have suffered, waiting for some test to tell us what is wrong. Waiting for something to say we may get better. Waiting for some medical answer. I still hope I will find one. But in the meantime while we are waiting it is good to explore how it makes us feel. And more important to me, that I am not alone.

Thank you so much by the way for saying you are impressed with how I broke things down. It is the first pole I did, and I was just happy to have gotten the technical stuff right.

Suzy

[mountain girl]

Thanks for doing the poll. I always like to see how my experiences compare with others and a poll makes it kinda fun and easy to see at a glance.