writerlymom

Cooling vest fashion show- haha! Raisin, do you have one to recommend? I looked recently online and felt I had to draw the line with those. I already look like a yodeler with athletic compression socks.

Oh my gosh, even at my best I wouldn't have been able to handle a morning day camp drive. rgny, my heart goes out to you! In a completely non-POTSy way. Maybe more will post about what they did or didn't do to climb out of this. One of the things I'm wondering is what to eat that will actually taste good and keep me from turning to a waif again! No appetite.

Lyla and others who might benefit from this info- just thought I would share. I talked at length with my cardiologist again today. He has seen many POTS patients over the past 12 years or so. A prolonged crash is not unusual and all of his patients have come out of it and continued to get better. It would be nice to have definitive answers but the best guess in my situation is having been pushing so hard coupled with our fairly dramatic change in the weather.

Thank you so much Lyla. I hope you have more and more better days very soon.

Thank you so much! I've been very emotional about this and I'm sure that doesn't help.

I sure hope you can get some answers and a treatment plan that helps!

Sue, thanks for commiserating. I hope things turn around for you again! My docs say unequivocally that the rule is improvement. With this being my first sustained crash I'm a little confused on how active or non-active to be, etc. If stress was the primary trigger - shoot, I don't know how to avoid that in life exactly! Have been thinking about meditation... I think I have seen other posts by people who have gotten pretty well despite long crashes but I can't seem to find that info easily.

I should clarify that I'm not looking for medical advice, of course. Just wondering about others' experience! Thanks so much.

A friend of mine had trouble with Trazadone due to headaches. Wish I could be of more help. Hang in there!

Hi, I just wondered if anyone had experienced this and knows how to handle it. I had made tons of progress - was not "good" but could do so much more. Driving short distances, sometimes even in the morning; walking 20-30 minutes regularly plus light weights at the gym; grocery shopping on my own ... generally just managing life better. A series of stressors started hitting in March- ironically, around the time I posted here about my improvement...financial worries, a dear relative was diagnosed with cancer and passed away, significant work pressure (I write from home), teen friendship dramas, helping my other child start talking to colleges, navigating all kinds of stuff. At the end of May I was still feeling OK enough to try - wasn't smart but I did it - to jog longer than I have since becoming ill. CRAZY heart pounding with that but I didn't have an immediate crash. However, since the beginning of June I've been getting worse by the day. It's like my legs have gone to jello again, have dizziness/spaciness, blurry vision, extra tachy, no appetite, etc. I've talked with my cardiologist and neuro, seen my primary, and they have me playing around with dosages of midodrine and beta blocker but it doesn't seem to make a difference. I'm also very gradually increasing Paxil, which had been at 5 mg since February. (15 mg last winter, tapered down to try to have more energy.) I'm sure the hot weather doesn't help but I have AC so don't see why that would be a major factor. Does anyone have any thoughts on how to manage this or what to expect? Sorry to ramble and thanks for reading!

jknh9, just wondered how you're doing?

Just thought it would be nice to keep this thread alive. : )

Kitt- what did you do to resolve the sleep issues without meds? What meds did you end up with after the sleep was resolved? Just wondered, because so many people (including me) can't get to Mayo and most docs don't know to do these tests. I suspect Paxil helped me because it suppresses norepinephrine... however I also think that's why so many people have trouble going off it- it's as if there is a magnified charge of norepinephrine when weaning off.

I've had that too- definitely a POTSie thing. Beta blocker and midodrine are helpful for me. Also helps if you can remove some of your stressors at least temporarily, take a break. The beta blocker helps blunt the adrenaline response...just have to watch blood pressure. I think antidepressants help a lot of people but it can be challenging to find the right one. Hang in there!

Thanks for sharing - that's great news!

An antidepressant can help regulate this if you are willing to try that. I have mixed feelings about antidepressants but Paxil helped get my sleep regulated after I came down with POTS. I had been waking up at 2 a.m. every night for months. I would be on fire if I was lying down and cold if I stood up. Went down on the Paxil in Feb...hit major stressors March through now and the sleep is disrupted again so am going up a bit. I have mixed feelings about Paxil because I have learned it's one of the hardest to go off of.

I upped the midodrine this morning and it seemed to help ... I think one factor in all this is the anxiety/fear of a major relapse. That's not all of it - a crash is a crash - but I'm sure it doesn't help when you're already having wacky stuff going on with adrenaline and nerve function. Really grateful there is support on this site, people who understand it.

I wondered about this too- I have been on the downslide since late May and it's reached a point where I'm kind of freaked out. There has been huge stress this spring and I had been pushing myself hard, plus we've had spells of hot weather and the kids are finishing school so the routines are off. Paranoid about not doing enough and getting completely deconditioned again - not that I was anywhere close to "conditioned." Any tips welcome! Chaos, when you're in a flare how long does it typically last? And your previous bad spells- were they long? This one has been the longest I've had since when I was sickest last spring and summer.

This has happened to me and continued for days. I don't know the reason or a way to prevent it! In April I pushed it too hard and ended up visiting the doc, wore a Holter to make sure nothing had happened, which it hadn't.

Interestingly, I read somewhere that POTS tends to hit people who are very driven. I've wondered what that means biologically! Take care jknh9, things are going to work out for you.

Everything makes sense except the part about feeling pathetic. What you've done here is very courageous. It's enough to go through all the physical stuff; try to not let POTS beat you up emotionally. Lots of emotional factors coming in to play and it's important to give yourself a lot of credit. You might have a crash for a bit but will be back to where you were. Things absolutely will be OK.

jknh9, just want you to know I'm thinking of you! No matter what you do things will work out fine. The lighting, anxiety, the weather- POTS reacts crazily to so many things and you have a lot of new stimulation. Sometimes I think POTS wants to scare us out of doing what we want to do. Touch base by phone with your doc re: the med dosage maybe? Take care and keep us posted. You have come a very long way even if this experience is frustrating. Hug!

Midodrine only stays in your system for about 4 hours... I take 2.5 mg three times a day, have been doing it for a year. Seems to help with some symptoms. The only caution with it is if you have any tendency toward high blood pressure you shouldn't take it if you're going to be lying down. My BP is low so it's never been an issue. At first I had the goosebumps/chills but that wore off after a while- maybe after a couple of months, when I became more active. I hate taking meds too! Good luck.

Thanks everyone! I had tried Gatorade first thing early in the illness but it didn't make a difference; maybe will try that again plus something salty. I haven't checked BP in the early morning but even late morning I feel crummy and the BP is fine. I do get up slowly, etc. It's as if the cloud doesn't lift until the afternoon no matter what! I have been toying with upping the morning midodrine dosage.

Lewis, what do you do for exercise in the morning?