Symptoms And Finding The Right Meds

[kclynn]

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.

[kclynn]

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.

[Dizzysillyak]

hi kcmom,

Your son.s experienes with meds mirrors mine and why I say i'm drug intolerant. On the upside, I respond well to foods and certain supplements. I'm not sure why this is, but it's not that uncommon.

I have myoclonus, jerking, and after 6 years of monitoring this can only relate it to gluten exposure. I'm not sure what other people have linked theirs too, but glutamates are a suspected trigger in seizures.

Theanine will stop this for me if i've been exposed. This is the natural alternative for klonopin. Klonopin makes me too loopy tho. I take between 100 & 300 mg depending on my symptoms.. Sun theanine is the recommended type.

Have you had him tested for food intolerances or tried the elimination diet ? A lot of people discover that dairy and gluten make their allergies worse. I have a freind who only sneezes non stop if she's near her cat IF she's eaten any dairy.

hth .. D

[sandymbme]

I would wonder about food triggers as well. Although I would stress it is VERY important to discuss with his doctor before trying an elimination diet. For instance, celiac disease, (which I have) can cause a lot of the symptoms you describe, but if he has gone on a gluten free diet before testing is done it will come back falsely negative. It takes gluten to stimulate the response that shows up on the blood test, and even then, the blood test is by no means precise. My was negative, but my low IgA meant that no matter how much gluten I ate it would never read positive. The other "standard" test, an endoscopy, will again only show intestinal damage if he is currently eating gluten in his diet. So testing for this needs to be done first.

That said, there are a laundry list of GI and digestion issues that are very common with POTSies. Digestion is an autonomic function, so it pops up as an issue for a lot of us. The main DINET web site has lots of great info on common symptoms, as well as suggestions of things you can try to help him cope. And as they don't understand the mechanisms of this illness very well, it can be very difficult to get a med routine that works. It usually takes a lot of tinkering, and even when you have a good one, it occasionally needs adjustment. Good luck!

Sandy