Relapses

[MomtoGiuliana]

I am curious, has anyone on this forum who became housebound/bedridden with POTS recovered to a functional level and then gone back to being housebound/disabled--or swing back and forth at this extreme level, once on medication?

The other question on this--has anyone noticed over a period of years, increasingly forceful palpitations/PVCs, even with no other symptoms, or no other noticably progressive symptoms?

Thanks, Katherine

[Sue]

Hi

I definately have done that!! I have had an awful year, only I have NCS not POTS, at the beginning of the year, right after Christmas I was doing great!! Went to the store one day to pick up something for dinner, collapsed in the store and my life changed for 6 months!!! By April I had been bedridden for approximately 6 weeks, and in the hospital three times. After quite a few medication changes I am somewhat better!! I am totally functional at home, but now panic everytime I leave the house. I am not driving anymore either!!!! My symptoms came on so sudden I don't think I will ever take the chance of driving again, but never say never...

Hope you are in the "good zone" right now

Take care

Sue

[MomtoGiuliana]

Sue, I know about some of the problems you are facing based on your recent posts. I am really sorry you are going through all of this.

Is your dysfunction primarily related to unpredictable fainting episodes at this point, or are there other symptoms that are making you non-functional right now?

I am going through a minor relapse right now. I don't really know why except that I did decide to discontinue all my medications back in June. All was good until last week. I have restarted the meds, but not feeling as good as I was for most of the summer.

I do realize that relapses are common for most people with this. I guess I am just kind of scared that I could get *really* sick again, and I am curious whether that has happened to anyone. I do also understand the value of positive thought, so am working hard on that front too.

Without this forum, truly, it would be so easy for me to get discouraged. I am so glad that if we are all in this--we are at least in it together.

[blackwolf]

I have to say Yes and Yes.

I'm on my way down now. I had started a new drug and thought mabey I wouldn't go down so far, however, I seem to be still going down. I must admit though, it is slow and easy, not the crashing I'm used to. This has been much easier to adjust to and I still don't feel completely wipped out, just get tired easier and need to rest longer, a little more brain fog too.

Good luck and hope you can see the light at the end of the tunnel.

Blackwolf

[morgan617]

yep, it's all been said. morgan

[ethansmom]

Katherine,

I would have to say that I've never had a severe relapse that made me feel as awful as I did befor I had a diagnosis. I do have the normal ups and downs, but have not been bedridden since my son was born. There have been 2-3 episodes that I can think of that were bad enough to give me a good scare, but I was back on my feet within a few days. There were also times when I felt as though I was on the downhill slide, not extremely so, but I would gradually climb back uphill again. I hope this is what is happening with you! Have you started back on all your meds that you were taking before (i.e the same regimen)? Maybe it'll take some more time for them to get into your system. I hope you feel better soon! I know it can be tough trying to work and run after a little one when you aren't feeling so great, but hang in there.

[MomtoGiuliana]

Jessica

I'm in the midst of something--don't know really what to expect or what to make of it, but hoping for the best! I did restart both the SSRI and the beta blocker and I know from before that there is a period of adjustment. I keep having episodes of the old symptoms--bad tachycardia, dizziness, lightneadedness, feeling cold and hot, weird weak feelings in my arms and legs, bad palpitations--it will last for hours and then I feel better again. Especially if I drink plently of fluids and consume some salt. So far, I am able to function reasonably well--but there have been some times I have had to sit down.

I think I tried to go off the meds too soon? I don't know. My doctor did warn me that this could happen, and I took the chance anyway.

I'm glad you made it through your 2nd hurricane ok. Wow, you have been through so much since you've moved down there. That certainly must be challenging you physically and mentally! Take care and hugs for Ethan.

Katherine

[EarthMother]

Over the last 10 years, I have probably had three periods of severe "down time" with what we now call POTS. Each lasted between 3-6 months and was followed by a few years of much improved health. In the early days I recovered "completely" unaware that it could ever strike again. But this was before we called it POTS and had any coping techniques.

Good news is yes, you can recover even from another total wipe out. The body is amazing and it can heal with or without a doctor's empathy and understanding. Lucky for us.

More good news is, that sometimes we feel a total collapse coming on ... and dread that this is going to be one of the "long hauls" that takes us out of play for weeks or months .... only to be happily surprised that we rebound in a matter of days.

For me this is hardest part of this dis-ease. Not knowing and fearing the worst. Each time I learn a little more about what helps and my bag of tricks has gotten bigger and more fortified with remedies that help lessen the severity and perhaps even length of a crash.

Good luck to you. Keep us posted on your progress and we will keep you close in our thoughts.

EM