Going Downhilll... But Why?

[PetuniasMom]

Things were bumping along, with good days and bad, managing with school most days, tired but able to cope....and for about 4 weeks now, my daughter has been worse. Nausea is back, tummy pain is bad, exhaustion - not just tired but exhausted...and color ranges from gray to white. Her heart is doing funny things again too - in the middle of the night she has come to get me because she is scared - she feels like her heart is racing and her breath can't keep up - she says she cant describe it any other way.

Nothing has changed - still taking florinef, drinking as much as she can but its hard when she feels this way.

Just wondering what might make the florinef less effective all of a sudden?

[Dizzysillyak]

I'm not sure if this will help, but I crashed in sept due to an h pylori infection. Your daughters symptoms are very similiar to what happened to me. I don't know if other bacteria can cause this but

your doctor will know.

It's interesting that her color is off too. Mine did that for 16 years while I was eating gluten, but not since I stopped. If you try this, be sure to Go slowly eliminating gluten.

She may feel better by drinking some room temperature lemon water. A full glass with 1/4 of a lemon works for me. This will help her stomach and her liver.

Over the weekend you may want to consider feeding her bland meats and cooked veggies to see if

it helps. Hope she feels better soon. .. D

Ps. I'd slowly wean her off all caffeine too. It's known to make our hearts race.

[Katybug]

Has her salt intake stayed high enough to keep the florinef working? Just a thought...

[ramakentesh]

She might be just going through a worse period or the florinef is become less effective. What dosage is she on?

[PetuniasMom]

Thank you... Dizzysillyak, I will try the lemon water, we make sure she ingests noooo caffiene, and will maybe reconsider the gluten. She did have a biopsy and was negative for celiac, but I understand that her digestion is different, so maybe it is just harder for her to digest gluten?

Katy - I will have to think about her salt intake a bit more - we try to fill her diet with lots of high sodium foods, cheese, prepared salad dressings, pickles and soup...and lots of salt with her meals. But, when I think about it, she hasn't been eating as much maybe, because she hasn't been feeling well. But thats something I will watch for sure, because I guess too much is never enough, right...?

ramakentesh - I wondered if your body develops a tolerance to florinef and it becomes less effective? She is on .1mg per day, and has been on it for 5 months now.

[Rachel]

I wonder if the level of activity was too much for her to maintain. Maybe her current level of activity is something she can do for a short time, but not for the long run.

Personally, I can have a couple of weeks were I can push myself and do more than my normal. My health seems pretty stable at first, but I can't maintain that level of activity for weeks on end. If I give everything my body has to give every day, then I always get worse in the long run. I can only push myself to my absolute physical limit 2 days a week or less. I have to pace myself and find the right balance of activity and rest.

I hope you can figure out what is going on with your daughter, and I hope she'll be having some better days again soon.

Rachel

[Katybug]

Rachel,

Its interesting you mention this because I have decided that the thing that manages my POTS the best (way more than any of the meds) is me managing my activity very carefully. If I only do 2-3 hours of anything useful each day (which includes showering, getting dressed, etc.), then, even though I have symptoms, I can maintain those 2-3 hours each day. If I push myself and do a couple of days (or even just one day sometimes) of more than those 2-3 hours...I'm toast! So, even when I feel like I can do a little extra, I have had to train myself to say no and go home and rest or it could mean days to weeks of recovery.

PetuniasMom,

Maybe once she recovers from the acute flare, this is something to consider. It was some trial and error with me to se what my limit was without going over my "POTS" limit. I had to learn to stop well before I feel symptomatic because the activity seems to have a cumulative effect on my system.

[ramakentesh]

There was a group working with CFS patients in Australia that were trying to teach them to try and do more when they are acute and less when they feel well and tend to overdo it.

[kclynn]

Katybug and All,

I agree about the activity level having an impact. My son has been feeling better, other than constant nausea and intestinal symptoms, since Christmas and his activity level is up, even doing a couple overnights with friends, mild crash and good recovery. He has been waking every morning at 8:30 and up by 9. These past few days he is having many more tremors, mild jerks (which have been 95% gone) and chills and fatigue. His mood has been great. Other than the overnights he hasn't been doing anything extra, just average activity. So I agree about the activity - its just that POTS keeps moving the line and for us, anyway, you never know how much is too much! Sigh....

Of course the weather changed pretty drastically this week, so that could be it, too. Petunia's Mom, has your weather changed a lot the past month and also, Christmas is a really stressful time. It could be that tipped the scales to make her feel worse, just as a lot of the kids have a downhill slide in sept/oct when school starts because of all the stress.

.1mg is a very low dose. It could be she needs a little more. Has she tried Midodrine or any other meds?

[Hope]

Just a thought, I try to get my extra salt without Nitrates. The nitrates will always make my heart rate increase even with my meds. The only lunchmeat I eat is Hormel Natural Choice Turkey (I eat the turkey I'm not sure if other meats have the same ingredients, you would have to check). Not only is it gluten free but it is nitrate free except what occurs naturally in celery juice powder and I do well with it. I can't eat olives, or pickles, or anything with nitrates. Apple Gate Farms is suppose to have a turkey bacon without nitrates, but I haven't gotten any yet. I do most of my salting with table sea salt, and Regular/original Better Made potato chips are always next to my bed. And like the others have said, I have to control my activity on my good days, or I will pay for it. Also I eat gluten free and dairy free for easier digestion, and I feel it very quickly if I cheat! Then there's the monthly cycle that throws everything off. I don't know how old your daughter is, but if she has a cycle or is even getting close to the age of having one, that could have an impact. I hope she's feeling better again soon!

[Friedbrain]

A few thoughts.....one is that, for whatever reason, I have more problems at night with re to heart racing. I have found that on particularly bad nights, even trying to lie down on my pillow will get my heartrate going. On these nights, I sleep with my head up, raised by several pillows. When it's really bad, I sleep on my back almost sitting up. When I can (because I hate sleeping on my back), I will sleep on my side but using two pillows (arranged to make a kind of ramp, if that makes sense; I've also seen actual pillow "wedges" available on the internet) so that my head is up as much as I can get it without being uncomfortably bent.

Second....along with what Hope said about the monthly cycle, I JUST realized that progesterone may be exacerbating (or even causing) the heart racing. Because of a long side-story, my famdoc and Gyn agreed I should go on progesterone mini-pill (which I'd been on in the past, years ago, successfully). I started on Sunday, and Sunday night experienced heart arrhythmias, and heart racing all night. Monday, I experienced severe dizziness (and accompanying numbness in my fingers, etc) all day; heart racing and arrhythmias all night. My docs both told me to go off it. And I slowly recovered (not right away, but symptoms lessened daily) over the past week. Thinking about it, I realized that my worst times for experiencing nocturnal heart racing would map to the time when my progesterone is peaking (after ovulation, before my period).

The third thought.....which is based on advice I received from here......was to do some kind of activity (to burn off excess adrenaline?) to naturally get my heart up. I have a set of arm weights next to my bed. When I wake up like that, I get out of bed and do under-arm pumps with the weights (arms down and back; bend arms and straighten, pushing as far back and up as I can) until my heart is racing from the effort. When I get back into bed, my heart is racing but I find I'm much calmer and the reduction in heartrate is a sleepy/relaxing feeling rather than scary feeling (if that makes sense).

Good luck!