HopeSprings

Ok I just watched a little video on this - this thing looks cool! I just don't get how it inflates?

My first round of disabling symptoms hit in 1997 while I was in my last year of college studying behavioral science. I was so bad I couldn't even read the text books to study for final exams. It felt like I was brain blind? - I couldn't focus my eyes, the words had no meaning... I couldn't get the info into my head. My mother had to read to me. Somehow made it through that, then went onto a Masters program in Criminal Justice. I have no clue how I did it - I was SO sick. After that, I got a job as a private investigator with an Atlanta company that had an office in NY. After two years, I just couldn't do it anymore. I got seriously ill on a business trip in Miami, contemplated suicide while alone in that hotel room -sorry, it's the truth. I had been so ill for so many years - I just felt like I couldn't take it anymore. I came back and told my boss I needed a leave of absence and never made it back to work. The following year I married a man I met in college and he has taken care of things financially ever since. I hate that my education has been wasted and feel so frustrated that I cannot contribute financially.

I had several of the ones you mentioned pre-POTS. Frequent urination at night, very low blood pressure, weird/bad feeling after naps, always tired/low energy, couldn't tolerate the heat, sensitive to the cold. Then in highschool started getting weird dizzy/surreal feelings, had a hard time focusing my eyes (to read for example). Then in 1997 was hit with a barrage of neurologic symptoms - thought it was protracted withdrawal from benzodiazepines (maybe it was). Then in 2006 hit with the adrenaline/rapid heartrate/chest pain/breathing symptoms - I think this was the start of POTS for me. I don't know if all the other symptoms were pre-POTS (dysautonomia symptoms) or totally unrelated.

Can I ask when you guys get the burning pain in your feet? Mine only appears at night when laying bed. Not sure if that fits with SFN.

Oh sorry, Issie that's frustrating. I know I overreact to everything too. I usually get the lowest possible dose (or pediatric dose when possible) and then take that pill and quarter it (when safe to do so). Keep us posted.

I'm sorry, I don't have great advice for this. Just wanted to let you know I completely empathize with you. Actually you deserve a lot of credit for going in the first place and trying to have a life. I've sworn off travel and it's sad because I have close family living in another state and I never get to see them unless they come to me. I would say to try to make this vacation your own. Do as much as you can, without pushing so hard, you crash. It's hard to accept our limitations, but you don't want to make yourself feel worse. So just try to go at your own pace and enjoy as much as you can. It's good that the people around you understand. Let's hope you will be better one day and can return to this spot and do all the things you want!

Thanks for this. I've been thinking along these lines lately.

I like this article for an explanation of it: http://www.ccjm.org/content/76/5/297.full

I thought cutaneous meant that it just affects the skin. If your biopsy is positive for cutaneous mastocytosis, does this mean you also have systemic MCAD? I don't get it. I saw a dermatologist about a month ago - I have a bunch of brown spots - one turned red, raised and itchy so I thought it was worth looking into. She diagnosed it as something else and wouldn't even entertain the conversation of Masto/MCAD with me. I don't know of a Dr. around here who's gonna give me a skin biopsy. You're lucky to have found these Dr's.

"I know that I pool because I have very bad blood vessels and my feet swell and hands too. My feet and arms turn purple with being upright and standing." This happens to me too, but I took this as a sign that my blood vessels are NOT constricting - allowing the blood pool, which causes the color changes - blue, purple or red (mostly bluish/purple). If I elevate my legs, my feet go back to normal color. Unless the color change I am seeing ISN'T pooling, but something else?? My BP is generally low, but it does go up (a normal amount) when I stand, so there is at least some constriction going on. Alcohol makes me feel much worse and I assume that's because it's a vasodilator. Coffee helps - vasoconstrictor. But Midodrine (which theoretically should have worked) did NOT agree with me. Just thinking out loud here. This is a hard one to figure out.

Don't know if this one has been posted before. I thought it was really good and easy to understand. Especially love the illustration - the visual gave me a better understanding of what happens when we stand. http://knol.google.com/k/postural-tachycardia-syndrome#

I was thinking about this this morning. (well sorta the same topic, not really) It's bothering me how many children are getting POTS - I just can't believe it. And what do children get alll the time - viruses! It may be overly simplistic, but I wonder if there's some nasty virus that targets the ANS.

Just to make sure I understand correctly - you are thinking some are overconstricted and HIGH BP is the evidence for this? Just trying to figure out how you would know (what bodily signs would tell you) whether you are over or under constricting. Thanks.

Can't help myself on this one. Could it be constricted blood vessls causing the slow down of blood flow and not the lack of blood volume? Hi Issie! Why overly constricted and not overly dilated? This has been a point of confusion for me because I thought THE main issue was blood vessels that don't constrict properly.

"I'm like Lady, Nothing is Wrong with my muscles!!!!" LOL! You're my new hero - I love you! I totally understand where you're coming from. Doctor frustration is almost as maddening as the disorder itself sometimes. It's true about endocrinologists - most are all about diabetes and it's so hard to find one to look at the more unusual stuff. For autonomic neuropathy, I think you want a neurologist who specializes in neuro-muscular disease. Oh, good luck - I hope you find someone.

Tinks, I'm in the U.S. My main symptom is weakness of the left arm and hand - and I have a hard time doing any activitiy that requires me to raise my arm - like shampooing my hair for example. My arm and shoulder start to ache and burn immediately. There are many other symptoms that can be caused by TOS including dizziness, chest pain and tinnitus. I have those symptoms and thought maybe TOS could explain some of that. I saw a neurologist and told her about my white hand and she sent me for an MRA of the chest (the aortic arch). It showed stenosis of the subclavian artery - thought I had my answer... but then the radiologist changed his mind and said he thought my artery was normal and it may have been "artifact" on the MRA and suggested I follow up with an angiogram. I followed up with a vascular surgeon who did a few tests and decided I was ok. Yeah, but then why is my arm so weak and why does that hand turn white??? This is the story of my life. Now your differences in BP between arms sounds more like Subclavian Steel. I hadn't heard that TOS could cause this (maybe it does). I hope the Dr. you saw checked your BP in both arms? Maybe you should get an MRA to see what's going on with your veins and arteries in that area? If I were you I would want to make sure Subclavian Steel is ruled out and look up every single thing that can cause Thoracic Outlet Syndrome (there are several) and get each of those things checked out. Don't ya love how it's up to us to guide Doctors through the process. Hope they're better in the UK. Sigh...

I am certain I have thoracic outlet syndrome in my left arm, but it's another one of those difficult conditions to find a Doctor who knows about it or to get help for. If I remember correctly I was diagnosed with this, based on loss of pulse when I turned my head a certain way? Diagnosis brought no help however. I think it also depends on what is causing it - either nerve or blood vessel entrapment. If you raise your arms above your head, does one of your hands turn white? Can I ask what tests they did to diagnose it?

Is this from a recent MRI? What does your Doctor say? I interpret this to mean that the MRI suggests as possibilities: MS, Vasculitis and/or (based on a little article posted below) changes due to some predisposing condition (like hypertension) that could cause these changes. It also says (if I understand correctly) that it can happen with age and cause no problems (let's hope for that one). Here's the article: http://www.netwellness.org/healthtopics/brainattack/svidmri.cfm

Same here. My hands especially get scary looking with veins very engorged and popping out.

Sue said: Naomi, I know that high catecholamines can produce hypovolemia. Oh interesting, I did not know that! I totally get where you're going with it. Darn it, why can't I be hypovolemic?? It would all make so much sense then! I just need things to make sense...

Tearose said: She will see over time that you had times of weakness and times of strength but that you have this incredible spirit filled of perseverance and love. Oh I missed this earlier. Beautifully put!

Sue1234 said : She was the one that diagnosed hyperPOTS and said, "Well, there's not alot we can do for it...". I want to enlighten her. And, BTW, she is part of the medical institution that has access to the Daxor equipment. I'm pretty sure I have hyperPOTS too based on Norepi results. Are you making a link between hyperPOTS and blood volume? If so, what are you thinking the connection is? It's not computing. I'm thinking HyperPots has some completely other cause not identified yet. Doozlygirl said: The authors recommend that blood volume measurement should be added to TTT for comprehensive testing of syncope. Do you interpret this to mean that BOTH should be looked at independently? Not at the same time, right? Position shouldn't affect blood volume results?

I face a similar dilemma. My daughter is going to be 3 in August. She has been home with me all this time and has never stayed with anyone, except my mother a few times and that was under very strong protest (on the part of my daughter). She is really freaked out by people and I feel partly to blame because she has been stuck in the house A LOT with just me (and her father and brother) - but mostly just me. I have tried to do library story time, tumble tots class, the park etc., but honestly it has been sporadic and dependent on how I am feeling that day. This is not fair to her. I decided to put her in part time preschool this fall and I struggle with feelings of guilt over this. At 3, she doesn't have to go. And she's gonna be UPSET. If I was ok, I feel I would be able to give her all the social outlets and educational experiences she needs. But I'm not, so I think this is what is best for her. Plus, it will give me time to go to a Doctors appointment, do some research, rest or whatever. So Dani, as difficult as it is - I think we're making the right decision and it is only part time (if that helps). I'll bet she will get a lot out of it. Momtoguiliana: you said it all very well and made ME feel better about this! Sue: I have a 7 year old also and his activities are picking up. I worry about the things he is going to want to do and whether or not I will be able to come through for him? I hope your children understand. I hope my children will understand. I am hoping if anything, this will make them more compassionate human beings (and hopefully not totally resentful human beings.) I worry that one day when my son gets married I will still be dizzy - at his wedding. I guess this is part of the frantic need to get answers - I want to enjoy them more and I want them to have a normal Mom. Brye- I'll bet you're right and they wouldn't trade us for the world.

Thank you wonderful people for all the warm support. Lots of really good coping advice in there too. I feel emotionally better and more focused today. I think in the future when it all gets to be too much, I'm just gonna have to shut off the brain and take a break.

I have been sick all week and it just makes everything worse. I feel emotional, frustrated, depressed. I have been feeling like what is the point of all this reading, researching, seeing all these Doctors. I have gathered an overwhelming amount of information here - that goes in fifty million different directions - it's over my head. Everything from gut bacteria to MCAD, some non-obvious ehlers danlos, mitochondrial disorder, neuropathy and on and on. I'm spinning. And even if I want to explore some of this, I have no Doctor to do it with because no ONE Doctor knows about ALL these things. And the top medical minds that are working hard on it, simply don't have the answer yet. They've been researching for what, 10 years at least? Like I am going to figure it out? Do I just finally come to a point of acceptance that this is my life and forget looking for answers? That's really hard to do, but so is trying to figure this out. I went to get my stockings today - decided on the knee highs - after an hour of pain digging into my ankle, I ripped them off and threw them across the room. This is the solution? more discomfort? Any medication I have tried only makes things worse. I just don't know where to turn anymore. I am 38 - life expectancy of at least 70 -- so that's another 30? years like this. Oh my. I don't want to bring anyone down. I'm sorry - I just had to get it out.