HopeSprings

Wow, I am sorry about your son. I continue to be amazed how this thing just strikes people out of nowhere. You and your wife seem very smart and resourceful. Just wanted to mention there is also Dr. Julian Stewart who works with pediatric dysautonomia patients. He's in NY. I sincerely hope you get all this sorted and your son gets back to full functioning.

My biggest problem is vestibular symptoms. Definitely let us know what type of testing they do and what your results are. Also, if they make a connection between the vestibular system and the ANS, I'd love to hear their take on it. Hope they can pinpoint your problem and help you.

I'm sorry about your son. It sure sounds like POTS or some form of autonomic dysfunction. Are you saying he has a high resting heartrate and then it jumps up from there when he goes upright? If it goes up at least 30 beats (or I believe over 120) it meets the criteria for Orthostatic Intolerance. I do think the heartrate is supposed to come down at least somewhat when laying down, however. Sounds like he is taking all the right conservative steps. Maybe medication would help? I was just curious since this the symptoms are relatively new... were there any precipitating factors that you can think of? Any injury, trauma, illness, new medication before the symptoms began? I just always wonder how a perfectly healthy person can suddenly develop all this dysfunction out of the blue.

Good question. I read (somewhere) that all these rapid heartrate episodes is like constantly running in place - that would be tiring! Also, a lot of us seem to have sleep problems, unrefreshing sleep, not enough deep sleep or REM sleep and other sleep disorders. For me just trying to get through a day dealing with all these symptoms is exhausting. I spend so much time just trying to FOCUS. I am trying to focus my attention, my eyes, work through the dizziness and brain fog. It's tough. And I would think fatigue is just a classic symptom of most illnesses. We're sick. I'm sure there are a dozen other reasons... which I'd also like to hear about.

I'd love to hear too.

Wow, how did I miss this article and all the discussions about it!? It sounded so out there. It's a good point that the heart "shrinkage" could have occurred after (or as a result of deconditioning) from the POTS. Does this actually happen when someone doesn't get enough exercise?? One's heart literally shrinks? I wish I could test his exercise theory-- it's just sooo hard.

This Dr. decided we have smaller than average hearts and can be cured with exercise? Grinch Syndrome? Is this a joke? It seems like a real article. Help me out here. http://content.onlinejacc.org/cgi/content/short/55/25/2858

Did the Dr. say they want to do a Tilt Table Test? Google it --it's not a bad test at all and can give lots of useful information.

I am in the middle of exploring the same thing. I have lots of neck issues and wonder if it could be contributing to the POTS. I have been in lots of pain and discomfort for over a week and decided to take another look into this. I found a neuro-surgeon who specializes in the spine and will be making an appointment to see him. He requires the MRI be less than a year old, so I am actually going tonight to get a new cervical spine MRI. I am not confident that he will know anything about the spine/autonomic connection, but I would think if anyone would know -- a neurosurgeon SHOULD. If you ask your neuro that question ...I'd love to hear his response.

Does this make anyone else wonder if "POTS" - main criteria being orthostatic intolerance (which 90% of "CFS" people have) is really CFS? Is this all really one illness?

Oh how I dread getting out of bed in the morning! I lay there -as I am just waking up- knowing that as soon as I stand things are going to go all haywire. I think it has to do with the blood dropping down and pooling. I am not sure, but I just picture while laying down the blood is all evenly distributed and then once we stand -because we don't properly constrict - it drops and causes this overreaction with the heart trying to pump to get it upwards. Also for me, my blood pressure drops really low at night and while I'm sleeping, so I think the body knows it's got to get BP higher to function properly-- so it does whatever it does to get it to rise rapidly. This also might be related to the whole norepinephrine/epinephrine over response... which is true for some of us. These are probably oversimplified explantions, but it's how I understand things in layman terms.

Did he have you collect urine directly after a flushing episode? Supposedly this is how the test is to be done. I have all the MCAD symptoms, but my urine came back negative. Congrats on the diagnosis (always feel awkward saying that!). Hope he can help you.

HOW do you guys figure out what foods you are reacting to? I am sensitive to everything -- chemicals, alcohol, medications. I have to assume food is probably on the list. It's just so hard to tell because I feel so bad everyday and you have to EAT everyday! If I knew certain foods were a problem, I'd eliminate them.

Good I hope the pressure stays on them to figure this thing out. It's been too many years with no answers.

I think I have salivary dysfunction too, but it is the opposite of dry mouth. All through the day I get sort of these squirts of liquid come through the glands that has an odd taste --kinda salty? It started with my first POTS crisis 5 years ago, so I assume it's related. I saw a mystery diagnosis episode about a woman with Sjogrens and the way they found it was through a lip biopsy. I think it's very painful though. Everything else is dry though, skin, hair and especially my eyes.

Well said Julie... and personally helpful.

Ugh, you poor thing. Pregnancy made me worse too. The one thing that stood out for me is that you are coming off Klonopin(or recently came off?). Have you thought about the possibility of benzo withdrawal? I went through it with Klonopin and it was extremely bad for me. I would think the fluid retention has to do with the pregnancy? I was verrrry POTSY my first trimester. Things settled a bit during the second, but really I was pretty sick the whole pregnancy. It's good at least that you are in the care of Doctors who can monitor you. I hope they can help you to feel better soon.

Yes, I am scared too. Things were really bad in February of '06. I was in really bad shape and thought I might die -- at times wishing I would just die because I so sick and so terrified by the symptoms. I demanded to be hospitalized, begging for them to figure out what wrong with me. I hadn't slept for 12 days because everytime I started to doze off I would be jolted awake, heart racing and feeling like I could not breathe. This happened one night in the hospital and I tried to scream for help, but my voice was like paralyzed and all I could do was whisper "help, help." Oh my god it was terrifying. They never figured out what was wrong and I was discharged as sick as when I went in. Things slowly improved in the month that followed, but I still had (and have) lingering symptoms --later found out it's POTS. What scares me is being back in --THAT place-- at a crisis level. And what was just as bad was the Dr's not really beleiving me. In a three day period I had been to three different hospital Emergency Rooms. Each one did an EKG and each one sent me home with an anxiety diagnosis. I knew it wasn't anxiety -- but they would not listen. It was like being in a bad twilight zone episode. I feel traumatized by the whole thing. I wonder if this is what like post traumatic stress feels like? The good news is that the more years that pass, the more removed I get from 2006, the more confidence I have that it probably won't happen again --to that extreme. I try my best to ignore the symptoms, to work with them and live my life, but it is hard. In the end we have no control over this, so I guess all we can do is try to have faith.

Lieze -- have you had a gastric emptying study? Dumping syndrome actually does sound like what you've been describing. I get symptoms after eating too. I get lightheaded, feel really spacey and confused... especially after large meals like Thanksgiving. I had the study done, but it was normal. I told a cardiologist about these symptoms and she said I should see some Dr. who specializes in metabolic disorders... but that guy didn't accept my insurance and was too expensive. Maybe you could see someone like that -- an endocrinologist who knows about metabolic problems? Have you tried just eating little bits spaced out through the day? I don't know -- just trying to think of ideas for you.

KC -- I have no idea how to keep warm. I have to give you a lot of credit for attempting to sit outside in 27 degree weather. You're a great mom! It was in the 40's here today and I was so cold in my house (which was supposedly 71 degrees)... I wanted to cry at the thought of having to go pick my son up from school. Those warmer things Firewatcher mentioned sound really good. I'll have to look for those. CAN'T WAIT FOR SPRING!

((hugs)) I FEEL your frustration. Let us know what the Dr. says.

A lot of us here seem to have spinal issues. Although this is probably a common complaint in the general population, so I don't know if it has anything to do with POTS. I have two herniated disks in my neck, degenerative disk disease, reversal of the curve in my neck (is this spondylosis?) and an osteophyte pushing on my spinal cord which compresses a nerve. One Dr. recommended surgery, two said I didn't need it -- so I'll go with them for now. I have wondered if it's related too because of all the nerve running through the spine (vagus nerve etc.). I think there is a reference to cervical stenosis being a possible cause of POTS in the Dinet "list of possible causes." Like you said -- there is so much overlap of symptoms, it's really hard to know.

Don't know if this has been posted here yet. There is a new study which looked at spinal fluid of CFS patients and Lyme patients and found unique proteins in each as compared to controls. Sounds promising. Here is the long complicated version: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287 And here is a synopsis: http://www.washingtonpost.com/wp-dyn/content/article/2011/02/23/AR2011022305444.html

Yes to brainfog, lack of concentration and dizziness. Reading or any activity requiring eye focus makes all this worse. No nausea here, although I think it often goes with dizziness. The only thing that helps me is to lay down. I also feel somewhat better after my morning dose of coffee, but things steadily get worse as the day goes and the more tired I get. This is my most challenging symptom. If I could get rid of the dizziness I think I could handle all of the other POTS symptoms. Wish there were answers for us.

Lieze: I was just worried that they might ignore the physical symptoms and label you with a psych diagnosis. Mack's Mom said it well. Obviously 89 lbs is not good and poor nutrition can make matters worse. Oh how frustrating this POTS thing is -- it can just cause a whole new set of problems. And more frustrating that Dr's don't really understand it or know what to do for us. I hope you will get some real help. Keep us posted.