kclynn

Good advise. My son takes magnesium and riboflavin. Before that he took amitriptyline which did work (similiar to the nortriptyline). The amitriptyline took several weeks to start seeing results and up to a couple of months so stick it out. Also, Provigil caused me huge headaches! Headache specialist is probably a good idea.

He has an appt with his family Dr. on Thursday. I am really beginning to think it is related to reflux/GI issues. He also burbs, had had nausea, GI trouble pretty badly for the last year when his POTS is symptomatic. I had been thinking of asking for a GI referral and none of the POTS Drs we have seen really want to address it. We don't live close to them so I understand. They say see a GI Dr. at home. He has lost 35 lbs in the last year and a half, some of it was intentional in the beginning. He was a little heavy and now is perfect for his height but we are concerned that he has lost much of this weight through not being able to eat. 16 yr old boys usually have big appetites. Anyway I have read how the reflux can be causing symptoms of coughing, his is worse at night, when he lays down, then he has trouble breathing and I guess the throat can close some because of trying to protect the lungs from the acid. His Dr. over the years has prescribed zantac every once in a while, so it isn't a new thing. Thanks for the replys.

I know this is discussed a lot. I know it mostly that the ANS is affecting this, though from what I have read of studies it is poorly understood just how it is doing that. But my son has had so much trouble with this lately, and I am sure once it starts that he then gets anxious about it and it all gets worse. Dr. says to increase his Clonidine, which he has been taking just a small amt of and doing good on it. But I can hear him coughing as as well as he is struggling (he isn't turning blue or having significant oxygen deprivation that is visible) and what I am wondering is if he could be having asthma issues? Anyone else?

I hope you get your answers and a good plan. My only advise would be to try to collect that reports if you can before you leave. There will be so much information that it can be overwhelming. Hopefully your husband can be there when the Drs. are talking to you and take notes.

Does the company that makes Lexapro have a program to pay for it if you cant afford it? I was on Provigil at one time (another very exp med) and they had a program like that.

Wow, such a smart Dr who knows it all and doesn't need to respect the most respected Drs! Being in LaCrosse my opinion is that you should make the Mayo appt. At this point an appt. that takes forever is a good thing since you have no symptoms right now. When the appt comes around if you still have now symptoms, reschedule it and then after that perhaps you may want to cancel it if you still have no symptoms. Keep it like an insurance policy since these appts. do take so long to get. I would also do the same with your January appt. Keep it untill much closer to the appt time and then weigh whether you want to see them at that time. I think there are many, many people who have shorter episodes of pots and then recover. As some here have said, they aren't here, they are off getting on with their lives. Praying you are one of them I love this quote - 'yesterday' is the past. 'Tomorrow' is the future. 'Today' is a gift and is why it is the present

Christy, That is so great to hear! I know your son had lots of trouble with insomnia (as does mine). What did they say to address that?

Pray for knowledgeable Drs., that they quickly determine what the problem is and are able to come up with a successful treatment plan. He has what he has, the best think is to figure it out and that will help him most. I hope they figure it out!

Still trying the battle the symptoms. Two medications we discussed at the last Dr. meeting was Scopolamine or Norpace. Since the BB was a fail we will be looking at trying something new. Anyone used either of these two? He said he uses Norpace on his most resistant patients Lovely. The side effects of this scare me but he said they would actually start him with it in the hospital for 3 days - just in case. Yikes! He also was thinking of a scopalmine patch. We spent quite a lot of time talking about his IBS like symptoms and how sometimes after a visit to the bathroom he comes out all sweaty, flushed, and weak and sometimes his jerks go crazy or are at least increased. So hard to say if these are from the physical processes or if the increased symptoms are from sitting upright for an extended time. I read that the Norpace is an anti-cholinergic which might have a good counter effect to the jerking and other symtoms but I really am not sure. Just trying to gather some info for next week.

We use Ebay a lot. Probably easier once you know the exact brand and size though.

Claire, Your baby is beautiful! What Joy You need some company for sure but that is hard, too. Can I suggest you call around to some of the mom's groups that may be in your area? I would explain your situation and see if there might be another new mom who would come for "playdates" at your place? Explain that a short visit would be very welcome but long visits are beyond what you can handle. I know dysautonomia can be very lonely. It is just a thought.

Good topic. I have been wondering about these for my son as well. I see in the category when you look them up they are listed as compression tights but then some just say running tights. Do they all do pretty much the same. And of course there are different brands and prices. There were some Adidas for around $40 - would they do as well (for the potsys) as say the the $90?

For headaches my son was told by a Mayo neurologist and a headache specialist Magnesium Citrate, Magnesium Malate, 400 mg was suggested to us but you can experiment (Citrate might be better to start) B2 Riboflavin, 400 mg also suggest to us (some would say increase all b vitamins so they don't become unbalanced). He stopped taking these for awhile and had no trouble but then had huge flare of screaming headaches. He has resumed the Magnesium and he has had fewer and much milder headaches since.

No Sorry, He didn't have ear pain that I recall. The Magnesium should be one of the "ates" not the magnesium oxide with or with out calcium which is poorly absorbed. Kinda hard to find. Your regular chain stores probably won't have either one, try whole foods or a supplement store though GNC didn't have it, Vitamin world did and another one here did as well. You can also try amazon which is where I ordered some from. GNC did have the B2. My son also took Amytriptyline with some limited success but stopped that when we went to the supplements.

No instant ideas to help, but my son takes Magnesium Malate 400 mg, and he also took B2 (riboflavin) 400 mg. The Dr. had told us Magnesium Citrate 400 mg which is what he started with and took for months. His headaches, migraines declined significantly. We just switched to Malate because it is supposed to be a little better for the muscles which is a bigger need for him right now. My son was having extended multi day migraines (even 9 days once) and we went into the urgent care to get the IV meds.

Jan, he has been on Midodrine and Florif for a long time, since last spring. Cardio has been raising his Florinf since Sept to the max dosage last month and still missing lots of school and declining. Today he is very weak and says he feel awful, can't describe it but from what everyone descibes and watching him surges of some kind. And he said yes to something surging through his body. I did take his bp last night in the car when we got home, right after he became so week and couldn't even lift a hand. It was perfect. 122/78 pulse 80 something. Cardio says that if he wasn't on meds his bp would be dropping, that whatever physiologically is going on with him is there making him feel bad but the bp does not drop because of the meds. Does that sound right? I do like the cardio and trust him, just not sure of my own understanding, you know?

How do you know? My son has been on Atenolol for a week and a half. Not sure what it is supposed to be helping but he sure isn't feeling better and his insomnia is horrible which, as you know makes all other things worse. Last night he was having shortness of breath, hard palps, extreme weakness. He had had a bad day all around with being extra tired and fatigued. Seems most on here for whom BB did not work got worse after a week or two. He also takes Midodrine and Florinef, magnesium malate and potassium.

The Midodrine should help with the pooling. If you have side effects try really hard to get through them because they should go away after awhile. Midodrine helped my son be able to get up and do things. My son is worse also when he is still too long. Actually he is worse if he does anything too long, sitting, laying, walking around and being upright, so he has to change up his activities. We did notice thought that if he was moving, at friends etc... he would be less symptomatic, and when he settles he can be more symptomatic. I hope the meds help!

Alyssa, How do they locate dogs that have this sense. Also, we have a golden retriever/sheltie mix who has been my velcro dog since we got him at the age of 5, and though loves the rest of the family he is obviously most bonded to me. BUT, when my son has jerking and especially last winter when he had prolonged jerking episodes, he jumps on top of him! He gets a bit agitated but wants to stay by my son until he stops. He also licks his arms and face. He provides my son enormous comfort during these times. He is an old boy of almost 16 now so I am very worried about him, also.

Hi CC, So sorry to hear you are going through this. Maybe you could find someone in Chicago? Also, Dr. Thomas Chelimsky is moving from Ohio to Froedert in Milwaukee which, though a drive, should be doable from where you are. I know that a lot of people really love Dr. Chelimsky and he is very thorough. Can your company shift you to another position that isn't as taxing on you? Or even part-time while you figure this out? I know it will decrease your income but you may have to do that for now. Also, stay as active as you can. Figure out a routine you can do, even if it doesn't seem like much. Some days you may not be able to do anything, others you can do more. Try to keep your body from being deconditions as much as possible. I know easier said than done. It sounds like you are doing all the right things. You can add lots of salt and increase your fluid intake to over 100oz a day.

Dani, Dr. Grubb has a paper that addresses convulsions with syncope.

We stayed at Homewood Suites. It was nice, 2 separate rooms, and has heated underground parking. They also have a crock pot type dish during the week so if you don't feel like going out for dinner or cooking you can have that. It is a cross from St. Mary's but most of the autonomic stuff is in the main building. They have shuttles that run every hour to half hour, though so that is what we did. Middle of winter and they drop you off at the door. The sidewalks around the clinic were heated so no ice or snow there, either.

Its just that I don't know what to do next? I should clarify that though he is active, lately he has missed 4 out of 5 days of school last week, and now he has missed everyday so far this week. His jerks were better the first couple days after starting the BB but are back with a vengence.

Sandy, what is so hard is that you can appear "over educated" and the medical professionals do not like that and are very suspicious of it even if they aren't personally challenged by it.

I apologize right up front if this sounds confusing and a bit long. It has to do with meds and controlling symptoms. My son has pots and nmh, March ttt hr went up 50 bpm, bp stayed pretty level then dropped after a delayed period. He started florineff .10 and midodrine 10mg 4X day, which he tolerated and improved and then came summer and he improved more to having a very nice summer with periodic symptoms that didn't really slow him down. Then August came, and even before school the symptoms started increasing, slowly but steadily, reduced to part-time, tolerated better but still missing. Dr. increased florinef to .20 and then to .20 twice a day. Seemed to help a little, but overall he feels rotten, weak, burning and freezing at the same time, insomnia, ibs with flushing and sweating especially immediately after spending an hour in the bathroom regularily (the Dr. seemed particularily interested in this), extremely itchy after a shower benedryl before the shower helps this, nauseous sometimes, tons of brain fog, loopy when he has been upright for a long time sometimes. Also his myoclonic type full body jerks (adrenaline?) are back with a vengence (he had them last year but they went away when everything else improved last spring). The loopiness subsides after a bit when he lays down on his back feet up, the brain fog not so much. Now the Dr. has added a beta blocker (50 mg atenolol) 6 days ago, and I do think it has helped with some of his anxiety and his sleep, though not super wonderful is much improved. He doesn't want to start with any bb that cross blood brain barrier because of school and trying to avoid too much drugged up feeling. His heart rate is great, his blood pressure has been good, a little high but Dr. tells me not to worry and that if it were dropping low would be more of a problem right now. It hangs in the 130's over 80's and he is 16. If is heart rate and blood pressure are controlled what would be causing the continued symptoms? The Dr. seemed to think some other part of his dysautonomia that we haven't identified yet. I believe his blood still pools because he tells me it does and I see him fidget when standing, doing squats, etc.. We do like our Dr., he is working hard to help us try to figure this out (no god complex whatsoever). He has days where he is fairly active, goes to school, goes to friends, rides bikes, etc... He says he doesn't feel great, but is able to do these things, though sometimes he feels good just because he was able to do these things, if that makes sense. I told you this would be long. Is this why people have to try to find the right meds? Have others tried meds that actually did what they were supposed to but still didn't control the symtoms? What other direction should we be looking at? MCAD? Dr. pointed out some of his symptoms seemed to be cholinergic but I am not sure how significant that would be.