kclynn

He does get flushing, rashes, hives, sometimes a lot, then he won't have any for awhile. He does take a clariton in the morning. Maybe he should take it at night? His arms were sore the next day, even. He has started exercising and lifting weights before bed (doesn't work for everyone but he likes it). He did NOT exercise the last two nights when he had the sweat episodes. I think there are times he did exercise and had them though, so don't know if there is anything with that or not.

I should add, I believe his BP drops during these episodes. I caught a couple of low readings (79/34, 75,39 and several just a little higher 70's over 40's) last fall. I haven't been able to take his BP because it causes him pain and distress and it doesn't really matter now that I know that is a probability. I had taken his BP many times previously and not gotten those readings so I think it is a brief occurance then raises back up.

My son has been having a great summer, symptoms are way down, BUT he has been waking up a lot lately with those excessive sweats and total body fatigue/exhaustion and now you can add muscle pain to it. His muscles in his body and his arms hurt and ache! Then 10 minutes later he gets very nauseous/stomach upset. Anyone know what is happening with his body that causes this symptom? Any meds that can help to ask the Dr. about? I hesitate to add meds when everything else is going good but the episodes are increasing right now. If this keeps up he will start getting anxiety over going to sleep (it has happened before).

Yay, Glad the Dr. was able to put you at ease a little. Funny, that is what they used to tell me about the kids high fevers - if they are responsive they are ok, don't worry, if lethargic, could be trouble Hope you are able to get answers.

Make an appt with Beverly at Dr. Grubbs. If you send in your paperwork, it will be about 4 months. Then you can continue to try to get in with someone sooner but you will have that in the works. Also there is Dr. Chelimsky (sp?) in Ohio also. Just a few suggestions. Once you see them, get diagnostics maybe you can go back to your Milw. Drs. Sorry you are going through this. What reason did he give that he didn't want to see you? Sounds like miscommunication. Maybe write a letter explaining your situation?

Don't have anything helpful to add. My son has terrible trouble with itchy skin after showers.

I seem to remember reading that he determines the heart size with an MRI and has said that echo cardiograms would not determine the heart size. Anyone else read this?

You didn't say if you are taking any meds? My son had severe memory lapses. His homebound teacher commented that he seemed like an alzheimers patient! We were very worried also. Once the Dr. put him on florinef and midodrine he really improved and memory lapses are rare and very mild. Also, he would remember the things he was having trouble with later, which was a little reassuring that the info was there, he just couldn't access it for awhile. When you get your symptoms more stabilized you will feel better!

My son had many of these multible times during the day during the winter. They slowly tapered and I think the florinef and midodrine helped also because he has had only the most minor occasional jerks (probably not very noticable to other people except me and him). I don't know how, maybe getting his body more stabilized. But once in awhile he will have a huge jerk, more so lately. Sometimes he is standing and talking and it will literally lift his feet off the floor. The stormy weather this week brought a short episode of these which we hadn't seen for quite awhile

I have a teen who has POTS who is actually feeling really, really great right now. He does have some mild symptoms, usually daily but can also be out and about with friends and feel mostly "normal". He his chomping at the bit to go do things like ride a BMX track or ride rollercoasters and rides at the amusement park near us (6 flags type, big rides). Last summer he told us he blacked out briefly on the rollercoasters twice. That was pre-diagnosis and his symptoms were pretty sporatic and mild then also (less than now even). He is taking midodrine and florinef. I just worry that these types of activities are too much. I won't let him do the track because he could really get hurt or hurt someone if he suddenly felt weak. But the rollercoaster I am not sure. I have watched some of the videos on youtube where they show ppl passed out briefly and they don't look like their in any danger of injury (they are held in really tight and have pads on each side of their heads) which is my concern. I just don't know if there is something else I should worry about. Any resulting crash or symptoms would be worth it to him

I thought I just added this but it isn't there so if it shows up later as a double post, sorry. He just takes the florinef.01 1x and also the midodrine 10 gm. Dr. had a huge preference on the Mylan brand for the midodrine. He was non functional when we went. It wasn't instant but a month later he was doing a lot more, finishing homework (I think he did a semester of biology in from the end of April to the end of May and got a B! I was amazed!) The jerks tapered off, the balance problem became less and less - there had been times when we couldn't get him upstairs and he slept on the couch downstairs. We can tell when the meds wear off and he might have some symptoms but they never get to where they were and actually usually pass in a short time. It will be interesting to see how much summer is having a positive influence on his symptoms, also, but I know the meds improved things in a major way and gave him his life back. I saw where you can't take midodrine, but could you tolerate florinef? Since that helps with his bp and retaining his fluids I think that may be the one with the biggest influence on his balance issues.

Elizabeth, He has been on this dose since the end of March. It has made such a huge difference for him. Nausea has been a constant for him even before he went on it. Dr. A asked him what were the two things that bothered him most. He told him loss of balance (he couldn't walk a straight line) and nausea. Dr. A told him he could take care of the balance issue but the nausea would be much harder. His primary put him on the stomach med. He has had many of those symptoms just with his pots but most of them are much better right now.

The meds he takes don't have a dangerous interaction but concerned about absorbtion. The med also supposedly binds with food and could affect the digestion. I think I will have him take his morning meds with a protien shake (I figure that will move through faster than food so can skimp on the 2 hour threshold). Hour later take the sucralfate, hour later lunch, 2 hr later midodrine, hour later sucralfate, hour later eat, and so on. This is a pain in the butt ... Sarah, he has been having some mast cell type symptoms and I did bring it up to his pcp yesterday... She was aware of mast cell disorders and was going to look into it - Yay! I know we will have to keep after her to get this addressed, however.

My son's Dr. prescribed Sucralfate for my son. He has had extreme nonstop burping the last couple of weeks. Reading labels and I see he is not to eat or take any meds with this, is supposed to take 1 hour before eating or 2 hours after eating and is supposed to take it 3 times a day. He takes Florinef in the AM and Midodrine 4 times a day.... The pharmacist did tell me he should be taking Florinef with food and I don't remember anyone saying that. Maybe that is why he is having such bad gastro reflux (burbing). Really trying to figure out how to juggle these and wondering if anyone else takes this med and how you manage it.

My son has these. He says he feels almost paralyzed when he first wakes up. As soon as he can he calls us on his cell, though he usually has trouble talking. He will be soaked from head to toe and we have to change sheets, and clothes. They used to be really infrequent, once every month or so, then more often, then we didn't see any for quite awhile, then very frequently, once a night most nights, for a few weeks, then much better, now lately once every few days. Can't really predict them and he wasn't taking any meds during lots of these so wouldn' really associate that for him. The couple of times they went away the Dr. had put him on Amitriptyline for migraines (pre pots diagnosis)

Enko, I have been reading this thread and so sorry you are going through this. Are the autonomic tests scheduled? If they are then you should be able to find out the names of the tests by asking. If it isn't then maybe you can tell the person your heart rate definately goes up when you stand up so perhaps it would be a good idea to include that. There is a "proper" way to do the poor mans tilt test. You need to make sure you move as little as possible, don't watch tv or talk to someone during the test. Also, I believe you should take several readings while standing up. My son's Dr. takes 3 readings over 5 minutes after he has been laying quietly for 10 minutes. Now, you may not be able to stand for 5 minutes, either. I think you should write down everything you were feeling during the test. This is because it is possible for someones HR to go up when standing but come back down. Someone with POTS their heartrate would not really come back down (might jump around quite a bit, though). Also, I believe most people will have the most symptoms earlier in the day rather than later, though this isn't true of everyone, so you might want to make sure you do it during a time of day you are most symtomatic.

For those who take Florinef, do you take it AM or PM? At first my son took it PM but thought maybe it was causing trouble sleeping so switched to AM. That was a couple months ago, but now my son is waking up with tachy heartbeat (110 bpm at least by the time I get in his room, may be higher) and I assume drop in bp. A few times I did catch very low bp with this exact symptom but most of the time when I take it it has returned to low normal 90's/60's. I don't take it anymore because it distresses him terribly because it causes pain. Also last night his hands and arms were cold and his fingers hurt. Would switching to PM help this?

K'smom, You are right. There is that "teen" thing also I know there are probably a lot of adults, too, who don't want to go "talk to someone" But our teens have so much going on and their HUGE desire for independence has been shattered, regardless of whether we tell them they will most likely be better in a few years. That is lifetime to them. And thanks Mack's Mom. It IS good to be reminded of the successes and also the getting through it can be really awful, but we will get through it It is almost 12 and MY teen won't get out of bed

I have only rarely gotten a low reading on my son (84/34). Now that we have his diagnosis and also the fact that the bp cuff causes him extreme pain I don't take it anymore. On the tilt table test he had a low reading similar to that also, but quite delayed. I have wondered about something. Since he has symptoms of low bp but I could only "catch" a low reading a couple of times, I feel like perhaps his bp dipped very low but by the time I tried to get a measurement it went back up but left him with symptoms of tunnel vision, blurry vision, weakness, dizziness, loss of balance... etc. which would last a very long time sometimes. It can take him quite awhile to recover from an episode. With the florinef and midodrine, this is much more rare (which maybe validates my theory?)

My son had a very bad phase of skin pain over the winter. If I lightly touched him anywhere he was in agony. That seems to have gotten better, but was there for a couple of months.

My boy doesn't like seeing a psychologist either. The one we saw was wonderful though. She saw us together, esp. since he was having so much cognitive trouble. I always asked him if that was ok with him. He could really care less. So we all talked. I gave her the big brochure on teen dysautonmia our first visit, and on our second she gave it back after having read it cover to cover and made a copy. She also made some comments that I know she has a very good understanding of his symptoms and what he had to deal with. She offered ideas, gave him a card with something to look over later and off we went. I think we have been 4 or 5 times in about 4 months (not recently) He always felt bad when we were there and I know it stressed him to go (it was about 1/2 hour from home). BUT, I saw changes in how he coped with things later and because I was there with him, I was sometimes able to gently coach him. Anyway, just because they don't want to go doesn't mean it won't help them, but the idea that opening up to someone about all their worries will be helpful probably isn't what the expectation should be. Yeah, boys don't talk about feelings, that is for sure. But they do like tools and a psychologist can give them tools for later when they need them. Nobody likes to go to the dentist, either, but you need to if you want to keep your teeth healthy. Just my .02

Love the poem. Christy, you're not odd, winter was horrible for us also. SOMETIMES he did get out and did enjoy a couple of times sledding but it was very rare. Mostly he couldn't get off the couch. I wonder how he will cope with hot weather. Not good, I am guessing. We see now that last summer he had trouble being outside doing his mowing jobs and it puzzled us, now we know it was pots, even then. Isn't is strange how some are so severely impacted by weather? Some can't take cold, some can't take heat.

It took my son a couple of weeks to truly see improvement on the Midodrine and Florinf so I would say don't judge too quickly. Also, the side effects of Midodrine, if they bother you, can decrease as your body adjusts but this also takes a couple of weeks.

PetuniasMom, I haven't written you yet and I plan to write more as we have been and are where you are, just having been diagnosed this winter. What I wanted to say tonight is to strongly encourage your daughter to join the Dynakids forum. They are a very positive group. They make room for feeling bad then help one another pull themselves up to keep going. Many of them have been and are where your daughter is right now and are now going to college. I have recently heard of some of them graduating law school, medical school and following their dreams, even though they may have a different path to get there than they expected. I also think that as moms we absolutely hate to see our kids suffering and now you feel you have to be the one to help her face the reality. I struggle with this too! How do I communicate and balance optimism with reality (when I don't know what that is going to be from day to day). I am trying to think of what to recommend to my son for school next year and I have no idea what he will be able to do. Will he be able to stand for choir (I know they will accomodate him and allow him to sit but will he?) I can see him toughing it out then the rest of his day being trashed. Oh, well. I know that you get what I am saying. We have to do the best we can with today. I will tell you he could not get off the couch during the winter and now he is able to ride his bike most days for awhile, walk the dog, hang out with his friends. We did go through a period where he was really, really angry, but with help and prayer he is better. Some days better than others. Now is maybe a good time to work this out with her, without the pressures of school day to day. That really made things harder, even with him being homebound. Feel free to PM me if you want. Hang in there!

Is it just me or is this a sensationalized title to draw people in and then there isn't any information to back it up? All I see it this title then a bunch of links about sudden cardiac arrest. Did I miss something? Is there a study or factual information linking this? I think people need to be really careful about where their medical information comes from. Just my .02