Wave Formation

[Kitsakatsa]

My Pots symptoms have changed from just constant to now waves. So I will have 2 or 3 better days, then a wave of 5-7 days of Potsiness.

Has anyone had this? Does it mean that its going away?

[Jacquie802]

Hi, I have something similar. When I go shopping for an hour or so, I sure do pay for it the next few days. This is me being on a Beta Blocker and Midodrine (before I was on Midodrine 2.5mg, now I am on Midodrine 10mg).

I am fine in stores for about 20 minutes then my symptoms flare up. Do you notice you are worse after days where you go out and about?

My cardio also told me that I most likely will have symptoms that are less severe for about 5 years or so then I am going to get worse, then be less severe, etc. So basically I am going to have waves my whole life.

Jacquie

[willows]

Yes, I to get waves of the condition.

If I do to much one day the next day is really bad , so I try to pace myself very slowly.

I also have this over powering feeling of flu coming every four to five weeks aching joints all over, head-achy ( more than normal ) I run a temperature and then boy oh. boy its two days in bed .

I just want to sleep all the time , taking very high powered pain killers ( controlled drugs ) as the pain just moving is horrendous and I shuffle about to the loo like a 90 year old.............

Willows.

[Kitsakatsa]

Yes, I do notice that it is worse after heavy activity days. But now, I feel a break in the clouds. One problem is my doc seems to take it less seriously now that there are two things happening: fluctuation of good bp and days when I feel a little more back to normal. I'm so happy when things are good, but then I feel bad again also feel emotionally bad because maybe I've lost my medical support in the process.

I went to a GI doc yesterday for the 1st time who concluded that I don't have POTS anymore because of those two things and my tilt @ mayo was not as dramatic as 2 years ago before any of the meds. I really think it has alot to do with altitude- I live @ high altitude, Mayo is very low. Also, I'm on 9 meds. I don't know what to think anymore- I just know that I feel pretty lousy.

[Dizzy Dame]

Hi there,

I used to have "waves" of symptoms, but I realized it was something I was doing. Whenever I had good days, I'd overdo it (without even realizing it) and then have four or five bad days.

Now I pace myself every day. I've discovered (through lots of trial and error) the exact limit for what I can do, and if I stick to that limit, I can keep from having those crazy fluctuations in symptoms.

I hope you find some relief though. It stinks to feel like you're on a symptom roller-coaster!

Hugs,

Lauren

[Jacquie802]

Is your GI doc an "expert" with POTS??? I'm just curious how he can say you no longer have it. Were you on your meds when you had your TTT? I'm asking because my GI doc tries to help me work with the symptoms I have DUE to POTS, he doesn't try to change my diagnoses if I'm having a few good days.

[Kitsakatsa]

Well said. No he is right out of his residence and ridiculous. Given a few days perspective I can now see his opinion for what it really is!

[jhjd]

The wave thing is def. true! I was very sick freshman year of college- then better, but still have bad days for about three years- then was very sick and mis (?) diagnosed with PCOS- then finally got better- then got worse this past spring (which, now that I think about it, was three years after the second attack), which sent me back to the whole round of doctors and the POTS diagnosis.

The thing is, it's not like you're just ever 'cured.' Because even when I was relatively asyptomatic (sp?), I always was more sensitive to temp., tired more easily, easily got colds/flu/etc. that would knock me out- basically 'normal' things were just always harder then they seemed to be for others. People would tease me that I'd get horrible hangovers nobody should get from the little I drank- but it was just because going out would totally wipe me out. If I'd gone to a doctor then, I would have probably just barely "passed" the ttt/echo, but it's not like you're normal. But I think you do learn how to handle things better and prevent the lowest of the lows.