Christy_D

My son goes back and forth with insomnia and hypersomnia. Right now he is dealing with insomnia more so. When he has the hypersomnia, he can be extremely hard to wake up and is disoriented when he starts to come around.

My son is experiencing more fatigue right now. He says he is always tired. I figured it was due to the heat and POTS. He is sleeping more, other than that, I don't know what else to do for it. He also started doing water jogging last month, a couple of times a week. So the exercise could also being having an impact.

My son had the thermo regulartory sweat test done. He was diagnosed with small fiber neuropathy from this test. I asked the doctor the signifigance of the test, he said it added to the diagnosis, gave more evidence to the dysautonomia. My son is also not being treated for it. It was for further diagnosis only is what I understood. I am glad we had the test done. My son did not sweat anywhere on his stomach/admonial area or upper left arm. By seeing where he didn't sweat, it explained why he was cramping up when he was playing sports(can no longer play anything unfortunately) and why he hates any heat, including sunlight, on his stomach. The thermoregulartory sweat test was uncomfortable temperature wise, but he didn't complain too much about it.

What prep did he use the day before? My son had the same deal, endoscopy, colonoscopy & antroduodenal manometry the same day....then a TTT while the manometry probes were still in place . Julie He had to do several doses of miralax, over like a 2 hour period, plus ducolax(sp?). So, yeah, I guess he drank a gallon of water, but over like a 2 hour period. Wow, sounds like your son had a fun filled day(ha). My son, Cody had all those tests, but not on the same day, or visit. Plus his probes came out, so he had to stay an extra day to redo it. He was complaining about being tired of being a lab rat!

The doxepin wasn't prescribed him for the hot spells soley, but for dysautonomia symptoms in general. Since starting the doxepin last October many symptoms have stopped, hot spells being one of them. I don't know if that is coincidence or from the doxepin for the hot spells. He also no longer experiences weak legs, where he had trouble walking without help, abdominal pain signficantly decreased, no longer does he have a 'heavy head' where he would rest it on my shoulder if he had to be upright. It also helped him with his insomnia for a period of time, but no longer(it has a sedative in it-or something like that). So, the doxepin has had a big effect on many symptoms. The main symptom that we are unable to get a grasp on is nausea.

My son had a colonscopy, and didn't have to drink a gallon of water? He had one the same day they did an endoscopy, all he had to do was clean out the day before.

I'm sorry your baby is going through this! My son (15 years old) used to have what we called 'hot spells' before he was finally diagnosed with dysautonomia. Since starting doxepin last October, he has not had a single hot spell. He is still dealing with many symptoms, but the doxepin has taken care of several of them.

My son's dysautonomia started with GI symptoms. He would curl in a ball from abdominal pain. He was diagnosed with gastroparesis and takes the Miralax daily. Since starting on doxepin and erthromycin(sp?) his abdominal pain is under control. He still has nausea, but they have determined that is a neurological problem. They have also discovered he has small fiber neuropathy on his torso. He does not sweat anywhere in the abdominal region, plus, he doesn't have any reflex movement on the right side of abdomin. He can't stand any heat what so ever on his stomach, even sunlight through a car window hurts him.

Fludrocortisone helps my sons dizziness. And Doxepin has taken away many symptoms completely. He is still nauseated daily though.

This is weird, my son, who doesn't complain of dizziness asked me last night if I stopped giving him his Fludrocortisone. I told him no, he said he has been really dizzy the last couple of days so he was just wondering. It has been extremely hot here, but he hasn't even left the house. I don't know what to think?

My son complains of his hips hurting. He also experiences pain in his heals.

Dr Kinsella at Forest Park Hospital is a neuroligst who also specializes in autonomic dysfunction. I live in St Louis and didn't discover this doctor until my son was already being treated by doctors in Cleveland. After our appt in Cleveland in August, I plan on making an appt for my son to see him. It would be great to have a local doctor rather than the 9 hour drive to Cleveland. I have heard very good things about him too.

My son used to have that, at any time of the day or night. That is one symptom that stopped upon starting Doxepin. He no longer complains of being hot, when everyone else is just fine. He used to strip down to shorts and stand outside in the middle of winter.

I myself have a softside waterbed. Can't live without it, I hate staying in hotels because I can't sleep a wink! Boyd is a bed manufacturer, they make air beds, waterbeds, latex, memory foam, adjustable beds,etc.. My husbands Boyd adjustable bed is not like the temperpedic. It is more of a pillow top style but with an adjustable base. If you had an adjustable base, you could raise it before trying to get out of bed??

What brand of adjustable bed did you get? There are so many of them. We got him a Temperpedic, but only because I work for a bedroom store retailer and get a good discount. The other brand was out of stock and we would have had to wait a month for it to come in. Otherwise, I would have bought him the store brand that we carry, which is still a good brand also. My husband has a bad back and he has the other brand as well, Boyd, and it is just as good. One has a wireless remote and the other has a wired remote, other than that, they are comparable. When my son's friends spend the night, they kick him out of his bed because they love it.

For my son, we purchased him an adjustable bed. He can raise his feet, if they start turning purple or raise his head. He loves it. Since he spends so much time in bed anyway, it makes him more comfortable to be able to sit up when he wants or is able. I kind of looked at it as not a luxery, but something medically that he needed. Christy

My son's vitamin D level was below 10 in March, so the doctors started him on 2000 iu daily. After one week, his insomnia subsided completely and he was less sick. He was not able to get out of bed before 3:00 in the afternoon, after starting vitamin D, he could get up by noon. BUT, this only lasted for about 2.5 months and he is reverting back to insomnia now and sick longer. He is due to have his vitamin D levels rechecked, so we'll see what they are now.

My son did a sleep study, he has insomnia. They did discover he has restless leg syndrome, but wouldn't treat it with meds because they didn't know if it would interfere with his POTS. So, basically for us, it was just one more diagnosis to add to the list. (By the way, he didn't have insomnia the night he did the study-par for the course). They wanted him to see a sleep psychologist to change his habits. This had no effect, they didn't understand anything about POTS and how he is sick daily and needs to lay down, etc.... Christy

For my son it went: Abdominal Migraines Migraines He just doesn't want to go to school Anxiety Autonomic Dysfuntion(no tests ran) Depression/Anxiety(even after psychologist ruled this out) POTS after TTT + Gastroparesis + Small Fiber Neuropathy Plus-Sleep Study done-Restless Leg Syndome-Told not to nap during the day even though he is so sick (Took 3 years for correct diagnosis. We saw 1.Gastroentrologist who referred us to- 2.Neurologist who referred us to-3.Biofeedback Internist who referred us back to- 4.Gastroentrologist who referred us to- 5.Psychologist who referred us to 6.Cardiologist who diagnosed but was no help-Pediatrician referred us to- 7.Diagnostician(he was definietly no Dr. House). I then called Cleveland.) Christy

Cody also took Reglan(not daily) for a couple of months when they thought he was suffering from abdominal migraines. I wonder if he took enough of it to also cause his tremors? Plus, 3 times when he was in the emergency room with migraines that wouldn't stop, they gave him an IV of Toredol, Reglan, and Benedryl. I imagine an IV of reglan is a pretty good dose of it.

I can't pick any of those for my son. His was not a sudden onset of symptoms, but a gradual increase in symptoms. He started off when he was in the 5th grade with frequent stomach aches. He missed 20 days of school in 5th and 6th grade, 30 days in 7th grade. The first half of 8th grade missed 30+ days before becoming sick on a daily basis and has not returned to school since (1 1/2 years). His symptoms added one at time also. First the stomach issues for 2 years before migraines started. Then dizziness and all the other symptoms(2 many too list). They believe it is hereditary as I have some symptoms, as does my daughter. But they don't interfere in our daily lives like it does my son. Christy

My 15 year old son used to get the weak legs and couldn't walk without help. He called them 'licorice legs'. He hasn't had it happen since starting Doxepin last October. Christy

Yes, Cody has tremors in both hands. His has been non-stop for over a year now that he doesn't even really notice it. He can't hold his hands still for anything.

My son didn't have meds or an IV at University Hospital in Cleveland. We were also allowed to stay with him for the entire test. In fact, every test he has had done we were allowed to stay with him so he had support in the room.

When my son had his Tilt Table Test, he was not given anything. He stopped taking his meds several days before, and they did not give him nitroglycerin(sp?). I don't know the difference of why some people are given it and some are not or whether or not some doctors prefer to use it during testing. So not all Tilt Table Tests are done with drugs involved. That might be a question to ask when scheduling the test?