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Dealing with POTS


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Hello Everyone, It has been a while since I have posted anything. I was helping my Mom who was the primary caregiver for my Grandmother who had Alzheimers. She recently passed away. I also have 3 jobs. I'm a Wedding DJ, I have an Ebay store, and I work part time at a Womens clothing store at the Mall. I also just moved. I really have a hard time with accepting I have POTS. Yes, I do have bad headaches, Dizzy, Nauesea, massive tingeling on my scalp. I always still push myself. I do like to work and find there is never enough time for all I like to do. I'm so Fatigued no one would believe it. I"m from Cleveland, Ohio and I see Dr. Stilman from the Cleveland Clinic. He even did Botox on me. That helped some but boy do I feel bad after a few months when the Botox wears off. He tells me I need to take a break from working to figure this all out. He feels I have Full Blown Pots. Yes I had a Tilt Table Test Lasted 4 Minutes. I always think WOW, I made it through the day like it was the hardest thing. This is very hard to accept that this POTS is going to change my lifestyle. I'm on effexor 150mg a day. Stopped beta blockers. I've really gotten used to feeling I'm gonna faint at any time, and I feel like I have the worst flu known to man kind ALL THE TIME. and My Fatigue is Unreal!!!! I have to go back to Dr. Stilman on the 15th. Please do not get me wrong. I love checking in to see what everyone is saying. I do not feel I will ever escape this EVER. Does anyone understand what I'm saying? I know it must be hard to believe when I say I have all these symptoms and still push on, but it is true. I have no Idea what Dr. Stilman will do on this Visit. Thanks to anyone for reading this. I hope everyone else is doing OK.

Kimberley

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Kimberly

I think I understand what your saying. I too push through day after day and many days I feel like death, in fact I'm starting to feel like my days are numbered. I know I have to work to support my family. It would be so easy to give up and just lie in bed and whither away. There were many days when I had full blown POTS that it would take me hours just to be able to stand long enough to get ready for work. I would sit on the floor in the bathroom to do my hair and put my make-up on.

I would imagine that maybe you don't get as much from the forum now, I'm guessing though. I know that when we first come here we have a million questions. It's a great place for information and support. But then we reach a plateau and kind of fall off a bit, if you know what I mean.

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Kimberly,

I think I know what you are saying.

Wow, it sounds like you have had a lot on your plate too.

Everyone has a different "threshold" of what they can do. I have been dealing with NCS and POTS for a long time. I was able to work for a long time although it took all I had to do it. For over a year I have not been able to work and I miss it terribly!!!! At the same time, in some respects I feel better since not working. The fatigue factor is what has been improved the most. Every time I try to get out and do things and keep a "normal routine or schedule" I crash and the fatigue is the worst part.

So, I think I understand what you are saying. It is hard to know sometimes how much to push yourself and when to back off and see if resting more would help. Maybe to start you could reduce your workload some to see if they gives you any relief. I do think for many of us it's a delicate balance between pushing yourself to do all you can and allowing yourself time to rest and heal as well.

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I'm at the same point as you all. It is hard to realize that my life is changing because of this condition. I will be out of sick leave and vacation leave in August at which time I will will have been off work for a year. The doctor thinks he can still get me back to work after some cardiac rehab but I was in good shape when this mess started. The only difference now is that he has raised my bp with florinef. My work is going to terminate me if I do not return soon or at least have a firm date. It is also hard not to do the things at home that need to be done.

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I had my job held for me for a year also. There was no way I could go back to it and I'm glad I didn't even try because there has not been one day when I could have made it through a work day. I could barely make it out of bed the entire first year! In the meantime, I've been able to keep myself focused on recovering. I do miss working also. However, I am also somewhat older (52) than I suspect some of you are, so I am truly worried about the stress of POTS on this old heart of mine if I push myself too hard. Maybe if I was in my 20's I would feel differently. Martha

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