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Hi Everyone......feeling Better!


mvdula
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Hi all,

JUst dropping in to say hi, and share my good news (to give hope to some of you maybe!). I was on here in late 07 and early 08 (was diagnosed by Dr Grubb in Feb 08). My POTS was postpartum (and I think somewhat before that...timeline: PSVT, PVCs, ablation, pregnancy) - my hellish time being when I cut down and then stopped nursing my then 1 yr old. I really thought I would NEVER be THIS much better. I still have POTS, but it is recently very mild. No, I could not do exertional exercise for any meaningful period of time, but can do what I need to do in my house and for my 4 kids with virtually no problem. This was not the case befor. The best news is: I used to have EXTREME heat intolerance - I would easily get too hot and apparently had no internal regulation (had to try to get in the freezer or right next to the AC for a long time - and that still wouldn't fix it), and felt like I was dying for about 1.5 hrs (the average length of my 'spell' - also brought on by exertion and hormone shifts). Just recently we have had temps in the 90s (yes, in Chicago!); since I have been ok, I decided to get over my fear (of having a terrifying spell while driving 4 kids around in a hot car). I have been FINE. IN fact, this morning, I was cleaning out the deck box - a very gross deck box by taking out the toys and cleaning them - bending over -= and doing this in the sun for a good hour and a half - dripping sweat. I felt great - I just keep thinking this seems like a miracle to me - I was enjoying sweating profusely (before I would get so hot so quickly I never even got to the point of sweating). I do have Klonopin and take .25 mg when I have an off day, or feel physical anxiety (a POTS symptom for me - dont know how else to describe it), or when I have a minor spell (none in a few months) - like 20% of the intensity of what I used to have and very rare. I probably take it only once amonth at most. Oh, I have had a lot of PVCs recently - like probably up to 20/day on bad days - but it almost seems like my symptoms are going in reverse from my onset - strange, who knows. I can pretty much blow them off and move on as long as they feel like what I am accustomed to and not some weird new thing.

Just wanted to share my good news - I hope it gives some hope to some of you who may be going through similar things.

We are blessed to have a forum like this where everyone is so kind and understanding - it really sustained me through the worst times - to have people who understood. Thanks to all who were so kind and took the time to reply at my worst time.

Maggie

PS also just realized I have not had the migraines as regularly (they started before the PSVT and were once amonth before my period). I still take the Fiorinal if I am getting one - but can only remember one in the last few months. One other note, I do not like meds at all - it helped me to get over that a bit - I take Klonopin if I need it - and Fiorinal at the first sign of a migraine - and don't worry about it.

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Good stuff! Wish I could get back somewhere similar. I am improving, but slowly.

Im like you in that I came down with POTS and then it improved to where i was quite functional, and felt ok - maybe a little dizzy most days but that was it.

Then I went overseas travelling and the flying and stuff seems to set me back and i was actually worse than ever before. Slowly getting back to normal though. patience.

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Thank you! Thank you! And Thank you!!

You don't know how much I needed to hear that someone was really feeling better. I can accept if I am never going to be 100%...but I really like to think that I can improve....and don't have to get nervous about doing too much and not being able to wash and dry my hair...or not being able to ge to off the couch!!

I love to hear from you folks who are doing better. it gives me hope. I am so happy for you and for your kids! It is a family disease as it not only affects us but everyone around us who love us..and our kids are so vulunerable and needy and too young to understand...

Please keep posting all those wonderful inspirations.

Erika

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I agree it's so good to read about those who improve. Could you explain the process in short form as to how this took place. Did your symptons slowly start to go away? Did you have longer periods of goods then bad and kept improving that way. I am so curious to know the process that you went through to get to this point. Could you share a little more detail of these?

Maggie

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Congratulations!!! Sounds like things a A LOT better!!! WOW! That is great! Thank you for sharing your story! It really helps to see that some people do get to feeling better and things CAN improve! Sometimes this is the kind of information that someone really needs to see to help them see some light at the end of the tunnel! :)

Congrats! Keep us updated! :)

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Thanks for sharing!

I have 4 kids also and was DX with POTS 1.5 years ago after having my 4th. It's great to hear how much you've improved. I also have horrible heat intolerance and we live in Arkansas. My kids love the park but that's not even an option this summer. It's nice to hear there's hope for improvement. Hope your better health continues!!!

Brye

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I too have started feeling better....it is such a great feeling. I just fear that it will go away and I will be back in bed :)

My good feeling came with the start of Florinef. I have my fingers crossed it lasts. I want to go back to work so badly

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  • 5 months later...

Hi all,

A little update - I have been in a bit of a relapse - just in the past couple of months. Still not awful tho - have had some chest pain 'episodes' - which I have described in recent posts. Still haven't had the major weakness episodes I used to have (those were terrifying & awful) - I might get a more minor one - still nasty, but not as bad. Not sure about the heat since it's not summer anymore, but I haven't noticed any intolerance. Have had a couple sudden spells - like walking thru target with 4 kids and suddenly weak & hot. But I took off coat and had my son push cart - felt better in a couple minutes - so I can handle that, but certainly not fun. Also have lots of PVCs recently. So, still a lot better overall than in the beginning of my POTS, but not as good as past spring/summer. Just the fact that I had such a great remission period gives me a lot of hope - and I didn't even realize how good it was until recently when I looked back at what I was doing - fast-dancing for at least 30 minutes at a wedding (out-of-state - having travelled and walked what seemed like miles the previous day with luggage!) - I couldn't do that now - or before that period of time either. Hopefullt, I'll get another great remission soon! I hope we all do - Brye - PM me if you want - I was also Dx after I had my 4th.

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