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Elizabeth
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My name is Elizabeth & Iam a single/recently divorced mom to 4 children, Lindsey 17, Ryan 16, Jonathan 12, and Marina, 11. Since early June 2005, Ryan has been experiencing extreme back pain and weakness, leaving him unable to attend school(10th gr) and do much of anything. He lays on the couch with his laptop (purchased so that he could attend school via internet) and sleeps in between classes. We have seen every type of doctor one could imagine, including most recently an acupuncturist and faith healer. He spent 3 days at Rainbow Babies & Children's Hospital In Cleveland, Oh this past August in hopes of determining the cause of his pain. The Neurologist there concluded that his problems were most likely psychological and directed us to a psychologist and pain management physician, Howard Hall at RB&C who trains pt's in self hypnosis and bio-feedback. All very nice and relaxing, but he's still in extreme pain. As I write he, he has just had a "spasm" type episode with back pain that originates at the same spot, to the rt of his vertebrae in the thoracic region. This pain occurs throughout the day, incapaciting him.

On Nov. 28th, I found a 3 page suicide note from Ryan and found him attempting to hang himself, fortunately he is okay, ...I found him in time. His letter spoke all about the pain and how he can't stand it anymore. He spent a few days at a peds psych. hospital. He's now on prozac 20mg every a.m. and elavil 100 mg @ bedtime, as well as a muscle relaxer prn

The only med or intervention that relieves his pain is vicodin and percocet or morphine. Physicians will not prescribe any more narcs for him due to his age and their lack of dx of why he's in pain. We have some meds at home (vicodin, etc) that we give him when the pain in unbearable.

I'm at my wits end. I found your website after a pediatrician at work (I'm a Pediatric RN at a local hospital) mentioned POTS to me. I had never heard of it. I checked his BP and pulse rate when standing. His heart rate sitting was 100, upon standing for about 2 minutes it was 130-140 and he felt weak and dizzy.

I would so very much appreciate a note to help Ryan see that there are others out there who can understand

what he's going through. He was an active teenager, skateboarding and hangin out with friends before all

this began. Now he just sits at home, hardly able to do anything.

Is pain usually associated w/POTS?

Thanks for listening.

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Hi Elizabeth,

I'm so sorry you're going through this, especially around the holidays it must be very difficult. My daughter has POTS and was dx'd prior to her 16 b-day and also missed her entire sophomore year. She is 20 yrs. old now.

My youngest son, who is now 16, had a lot of extreme stomach pain until he was about 14 1/2, and he too saw Dr. Howard Hall.

To this day, he'll still say that was his favorite Dr. of all time. The breathing techniques, bio-feedback, etc. didn't do much for my son either. He was put on florinef and elavil, and felt relief almost immediately. This was after years of not knowing what was wrong and countless Dr.'s later.

Have you had MRI's, Cat scans and the like done? Can you go to either UH or CC? How about Dr. Cohen, he's the pediatric neurosurgeon at UH. If you live on the east side of Cleveland (at least I'm assuming you live in Cleveland), we have a wonderful neurologist we see in Mentor. Maybe a second opinion would help? He's very aggresive as far as getting to the root of a problem, he has never let us down and he isn't shy about ordering tests.

Could his pain be related to something as simple as a pinched nerve? Or some type of siatica (sp?)

If you believe in any way that your son may have POTS, call either Dr. Thomas Chelimsky at UH or Dr. Fouad at the CC. They will do a Tilt table test and are both very thorough, if you need other testing done they will do it. Dr. Fouad isn't the greatest at follow-up, although some people have had better luck than others. Once you get a TTT--and if it's positive, I would make an appt. with Dr. Blair Grubb in Toledo. Bring all your test results to Dr. Grubb or Beverly (you can probably get in to see her fairly quick). We have had the best luck with Dr. Grubb as far as which meds have worked best for our daughter.

If you need any phone numbers or would like to talk...please PM me and I'll give you my phone number.

I wish the best for you and you son. Please tell him to hang in there. My daughter was so upset b/f we had a dx's too, it WILL get better. Hopefully it won't take too long to find the right Dr. that can help him.

Patti

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I'm sorry you are going through this with your son. It certainly is hard to deal with at any age. I think Patti really gave some great ideas on where to start, if you have not gone down that road already. Wish I could give you some input but please tell him not to give up, you will do whatever it takes to get answers and then you can both work from there.

I remember when I was about 17-18 and started having strange symptoms. Back then my family dr. just told me it was anxiety. At that age I could not believe I had anxiety, but since I did not have symptoms severe enough, no other tests were done. It was until I was about 23 that I had some more significiant symptoms and pursued more agressively other drs until I could get some answers.

I hope you both can get some solid help and answers soon :angry:

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Guest Belinda

I had pain and it pretty much started withit, it was in the middle of my spine and and sometimes I felt it in my chest it was the most horrific pain I have ever endured and I was also misdiagnosed with anxiety psychological issues after going to many many docs.

I went to pain center at Cleveland Clinic and immediately they wanted to do spinal blocks and told me that I had soem disorder of the spine after MRI revealed id idn't, I did not pursue spinal blocks.

Honestly the biggest symptom was pain in back and chest in thoracic region. So not that I am a doc. but I beleive that is how my POTS started showing itself up until then I was vaery healthy, I mean I had trouble with tachycardia in the past but symptom wise nevera problem, I was very active.

It took an endocrinologist to recognize that it was Pots and then TTT test confirmed it. I had mine doen at University Hospitals under Dr. Chellimsky.

This was just diagnosed within the last two months or so. But I can relate to your frustration and your son's despair I have been dealing with this for about a year.

I hope that your son start getting soem answers and relief soon.

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I agree with the others about getting a tilt table test done. Also, POTS symptoms can occur in anyone who is mostly bed bound for a long period of time because the body, heart and ANS become deconditioned and not used to sitting or standing. In a healthy person, the POTS symtpoms will go away once the person becomes conditioned and active again. It could very well be POTS, but if he's been couch/bed bound for a long time now, then the POTS symtomps may just be a temporary condition and not related to his back.

I would definitely look into getting a TTT done though. So sorry for all that you are going through. Keep us posted on what you find out!

Hugs,

Gena

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Lots and lots of people with POTS (and, I imagine, other things drs. can't explain) have been diagnosed with psychiatric issues. My daughter was actually on meds for bi-polar by the time we hit Mayo and got the correct diagnosis. POTS seems to start in many diff ways. We didn't start out with pain, but we have it now. Mayo is very good at diagnosing things, but the CC is , too, I hear. Good luck- and keep searching. Joanie

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Hi Elizabeth:

Sorry to hear that your son is in such horrible pain!

Pain is not necessarily normal in POTS. Pain is not necessarily normal, period. Why on earth is he in such pain that he is suicidal? Something is not right. Is there a spinal problem? That could account for autonomic problems and excruciating pain.

Maybe the only thing they can do in the short run is ramp up his morphine until he is comfortable. Have you seen a pain specialist? Many people have excruciating pain with no identifiable cause. The fact that the doctors aren't clever enough to figure out the cause of the pain is no reason to be stingy with the pain meds.

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