Running Out Of Gas

[marthamoss]

There was a thread in August about "running out of gas". My 17 yr old son has had POTS for the past year. He manages his day by what he calls "dying" when he holds his arms and legs completely immobilized. they are not really paralyzed because if he has to, he can move them, but if he tries to move them when they are like that, he gets chest pain and shortness of breath. His arms and legs also feel stiff. He goes all day with alternating hours, one hour moving around and one hour totally immobile. I guess it's his way of recharging because if he moves around prematurely, he sets himself back with extreme fatigue. We have just been to Mayo to see Dr Fischer,and I was hoping he had seen someone with similar symptoms, but he hadn't. Just wondering if anyone has experienced anything like this- kind of a pseudoparalysis?

[juliegee]

Welcome Martha- don't think I've seen you post before. I also have a 17 year old son with dysautonomia too. Mack is fairly well managed (60% of normal) with his meds. Wow, your description of what your son goes through & is forced to do to cope is heart wrenching. I have never heard of anything like this before. I will do some searching on the internet and let you know if I learn anything helpful. I hope he's had a good work-up at a major teaching hospital. It's so hard to know if this is dysautonomia related, neurological, or even endocrine, or some combination of all three. How long has he been like this?

This is probably a stupid analogy, but I rescued a chipmunk who had fallen into my swimming pool this summer. I just happened to glance out the kitchen window and saw him frantically swimming, his little nose barely sticking above the water. I have no idea how long he'd been like that. I raced out of my house, with a broom in my hand and was able to scoop him out. When I plopped him down on the deck, he was completely paralyzed- like he had spent every ounce of adrenalin trying to stay alive. He didn't even blink, but I could see him breathing. I worried and worried about him. He didn't move an inch for a long time. Finally, after about 30 mins. I decide to put a peanut butter smeared cracker next to him. I guess the sight of big old me scared him enough to haul tail into the woods surrounding the house. Your description of your son's paralysis reminds me of that chipmunk. It's like he spends every ounce of his energy simply maintaining homeostasis and he must conserve any reserve by not moving his peripheral limbs. This sounds very extreme.

Let us know what meds he's tried & what if anything has helped. You're both in my thoughts and prayers.

Hugs-

Julie

[lissy]

Welcome,

I know in the beginning of my severe symptoms I managed my symptoms with laying and staying in a certain position and I had alot of shortness of breath and those specific feelings drove me to do none stop searching to find what was wrong with me. I never got an answer and it took about a year for those intense symptoms to subside . And describing the recharging is exactly whats its like eventually my battery stayed low with few and far between spurts of short term energy, and thats where its stayed. Has he had his lungs examined yet?

I hope you find answers soon!

Lissy

[marthamoss]

Hi, Julie,

thanks for your response. Alex has been extensively worked up here in Boston and we also had a wk long visit to the Mayo recently. He doesn't seem to have any other diagnoses at this point except POTS. At first, we were trying medicines like crazy, probably too quickly and not giving them enough chance to work. He tried Midodrine, Inderal, Paxil, Effexor, Mestinon, Provigil,antidiuretic hormone and even had two courses of IVIG. Currently, he is on Adderal which helps a little, Metoprolol which has really been keeping his heart rate down, and Ambien because he has very bad insomnia. He has been sick for a little over a year. Dr Fischer at Mayo stressed the need to exercise and push through the postexercise fatigue, and I think taking that advice to heart has made him ever so slightly better. We stored the wheelchair away two days ago which was a big step!

How is your son doing and what has been helpful to him?

Martha

[juliegee]

Hi Martha-

I'm happy to hear that you've had the opportunity to get a good work up for your son- although it doesn't sound like it's done much good I agree with Dr. Fischer about pushing through and trying to stay conditioned- something my son isn't doing very well these days. When Mack was VERY sick, evenings were better for him. So we'd walk a mile or so around the neighborhood every night. Every night, we'd go a little more, a little faster. That little bit of exercise definitely helped. Mack got to the point where he was riding his bicycle long distances, but he's pretty much given that up. He says it's too hard- he doesn't feel like it. It's so hard to motivate a teen He does attend school full-time and says that wears him out.

Your son's stuff started about a year ago- after a virus, a growth spurt, onset of puberty (little late for that)??? I ask because sometime the onset points towards the cause. Mack first presented at age 12 with really severe stomach stuff. He had all 3: a severe GI virus, a huge growth spurt, and the onset of puberty that set his dysautonomia off. He got to the point where he could barely eat He was vomiting and nauseous all of the time. He lost oodles of weight. Then, the lightheadedness, intermittent anxiety, and the incessant fatigue started. He rarely left the house for a year. He finally had a good work up at Johns Hopkins where he was DXed with small bowel dysmotility secondary to his autonomic dysfunction- NMH. They hooked him up with a chronic fatigue specialist, Dr. Peter Rowe, whose been a godsend. At this point, Mack still takes a bunch of stuff for his GI (Nexium, Liquid "E" as a prokinetic, Culturelle, and he swigs liquid Maalox throughout the day. For the NMH, he takes florinef, salt, lexapro, and concerta. Because he flushes and has lots of skin inflammation, he takes an H-1 (claritin) and H-2 (ranitidine) and and minocycline daily.

I know what you mean about wondering if a certain med helps. We started with low doses, one med at a time & titrated Mack up to therapeutic levels on everything and have them a few weeks to see if they helped. Every once in a while, we withdraw a med (as a test) to see if a symptoms returns, etc. It's such a balancing act

Tell me why they tried IVIG on your son? Has he tried florinef? That one really helped Mack turn the corner. Your description of your son's extreme conservation of energy really pulled at my heartstrings. Does he attend school at all at this point? What are his plans for next year?

All the best-

Julie

[marthamoss]

Hi, Julie,

I'm a little confused about how to reply to posts- not sure if I'm hitting the right reply button.

anyway, it's very helpful to hear about other teenage boy's experiences with POTS.

Alex tried IVIG out of desperation a few months ago when he seemed to be going downhill and we had tried everything else. He did try Florinef early on- if I remember correctly, he first started Inderal which helped his tachycardia but dropped his blood pressure- then his doctor added florinef to try to counteract the blood pressure drop.

Support stockings (20-30 waist high as well as compression sleeves on his arms) have helped Alex the most and he wears them all day.

Currently he is on Metoprolol for the past few wks which seems to be very good at controlling his heart rate w/o dropping his pressure. He tried a tiny dose of Midodrine but had very severe side effects.

He got sick all of a sudden in the middle of a school day in october of his junior yr of high school- not sure what caused it. but in retrospect, he was unusually fatigued for about 6 mo prior to that. He was able to keep up with classes with home tutoring through about 3/4 of his junior year, but then got worse in June and hasn't done any school work since then. We're not sure what we will do about school- his class and all his friends are graduating this year.

I hear so many good stories about Florinef- we may try that one again.

How old is Mack? Excuse my ignorance, but what is NMH?

Best,

Martha

[juliegee]

Hi Martha-

How sad to see his friends graduating.... I can only imagine how heartbreaking that must be for you all- knowing that Alex should be among them

Mack is now 17y/o. He will graduate this year (God willing!) and plans to attend college in a different state- yikes. He takes around 20 doses of meds a day- not sure how he'll manage that. I think I'll do a few road trips next Fall, just to make sure he's staying on track. I can so easily see him forgetting a med and becoming bed-bound w/o anyone knowing. Scary.

NMH is neurally mediated hypotension. That's when your BP drops, sometimes to an immeasurable level. Lots of patients actually faint. Mack usually hit the floor before that happens. Mack's HR was quite high during his TTT, but not during the first 10 mins- so he doesn't carry the POTS DX. Both have similar symptoms and are treated similarly.

If Alex is getting benefit from compression on his arms and legs, it seems to me that he WOULD benefit from florinef. That helps to build blood volume. It's important to start with a low dose, like 1/2 of a 0.1mg tablet for a few days to see how he tolerates it before moving up. He must drink lots of extra fluid and take lots of salt for it to work.

Your poor son will be in my prayers. I hope you find a regimen that helps him be able to return to school.

Hugs-

Julie