Symptoms Worse After Ttt

[Tessa]

You know already about the TTT I had on Monday... I thought I was feeling better, but of course I have been at home all this time, resting and sitting at the computer or watching Tv...

I have started doing some housework today (cooking) and went to the Post Office (walked for a few minutes)... I have never felt this way before. I have always had symptoms and dizziness but it has been much worse this time, with a lot less excercise... Oooooggh

Chest pain, lightheaded, dizziness and pre-syncope. My movements were slow, I fealth "heavy", confused... And thought I would pass out. (Thanks God, my husband was with me)... We sat down for a while...

Before the TTT, it was always pre-syncope symptoms,... But now when I was walking, I felt that I was going to pass out. And I am feeling more or less the same when I keep standing for a while...

What is going on with me now? Has this been caused by the TTT? There is nothing else that could have changed my symptoms to worse but the syncope I had at the TTT...

Any suggestion? I am feeling more disabled than ever...

We had to turn down an invitation for tomorrow with some family to have a day out and a BBQ... And it is supposed that I have to go back to work on Thursday...

:(

Thanking you in advance for your answers,

Love,

Tessa

[Rachel]

Dear Tessa,

I'm so sorry that your symptoms are flaring up. It is probably just because of the ttt. Should we rename it tilt table torture?

Everyone reacts differently to the ttt, but I think most of us need a little while to recuperate. You might just need to keep taking it easy for a few days. Just two days ago I spoke with a lady who said that it took her three weeks to get over the chest pain after the ttt.

Again, I'm so sorry, and I hope you start to feel better soon.

Love,

Rachel

[pat57]

I can offer an opinion based on knowing myself?

After seeing how low the bp can go, and hearing a medical proffessional say "near shock" (for God's sake). Now feeling the symptons scares you all the more and of course effects your bp more too. You might now think you are in serious danger. Well your not. when you faint-(IE lay down) the bp increases and you will not be near shock. This is why the body faints, its needs to be supine.

you are not strapped in the upright position now!

[flop]

Hi Tessa,

sorry to hear that you are feeling so rough after your tilt.

As pat57 said you are not on the tilt table now so if your body desperately needs to lie down it will make you faint just the same way that it would have done before the TTT.

I always find that after a faint I feel dreadful and it can last from hours to days - this will be the same type of feeling that some people get after a TTT. Don't forget that during the TTT the patient is forced to stay upright for as long as possible or until they faint - in real life you would have sat down long before getting that dizzy so it is logical that it will take longer to recover from a TTT than a normal POTS episode.

My cardiologist always insists that I must never rest in bed all day. For example, if I get the flu I should make myself get up and sit on the couch / reclining chair. He says that allowing my body to stay lying down too much will make the POTS symptoms worse as my body won't be used to trying to get the blood up to my head against gravity.

Take it easy and do what you can. Don't push your body too hard, little increases in standing / activity are much better than trying to go straight back to what you could do before.

Hope you are feeling better soon,

flop

[Tessa]

Rachel, thank you. It is a relief to know that my current symptoms are not unusual.

Before the TTT, most part of the day I had to be sitting. My work (thanks God) is sitting (for around 6 hours). After this, during mainly the whole afternoon-night I rest at home: watching Tv, writing on my PC, etc. (sitting, of course).

When I really need doing some homework, I always try to do one or two things (if I am feeling ok that day) and sit from time to time. If I have to do some shoppings, sometimes I can carry it out without any further problems than feeling some chest discomfort. It takes about 30 minutes to buy all the things we need. When we finnish, my husband rides me back home, (because I do not feel that I am able to drive... I have not been able to drive our new car yet ).

Then I try to store everything we bought without feeling too dizzy... I cannot travel by car for a long distance (symptoms get worse) and of course, I cannot dance, excercise, speak loud... Sometimes, even taking part in a conversation with different people (therefore talking louder), makes me feel

Symptoms were always the same, sometimes stronger making me rest in bed for a whole afternoon, but I could more or less cope with them (even though our lives - as you can see - are very limited). I even cannot have a bath without feeling weak and/or dizzy... Before knowing about POTS I thought I was too lazy...

It has been years that I do not feel I am going to pass out (except when I had a blood test done). I always feel the usual symptoms (chest discomfort/pain, dizziness, lightheaded, breathless...) but though it has disabled our lives, we were - more or less - able to control the situation.

But now...

I do not think we walked 1 km from where the car was parked to the Post Office... And I had chest pain, felt extremely dizzy, lightheaded, "heavy" and... felt as if I were going to pass out.

It was not scary, because I know the symptoms, I know about POTS and so one, but I could not understand why it had been worse and it made me worry... Because I do not want it to keep this way... Even cooking I had to sit down...

I apologyze for venting, but I am frustrated, desperated, worried and sad. It is not one of my best days.

Thank you Flop, because you make me look at it in a totally different way, hoping it is just caused by the TTT and it will be back to "normal" after a few weeks...

Whatever it is, POTS, Vasovagal, NMS, etc. It is affecting my life, our lives... And it is not going better...

I just hope to find the help I need from the Cardiologist on Tuesday.

Thank you for your support,

Love,

Tessa

[deucykub]

Hi, Tessa:

You are still in my prayers. I am just so terribly sorry to hear your symptoms have gotten worse. Come to think of it, I think mine did too after the test. My brain is so fogged most of the time that I just don't put 2 and 2 together anymore very well. But forcing myself to stand up that long with the TTT did put me in a pretty bad place for a while. It has been getting better, though, and now that your doctor is willing to listen to what is going on, hopefully, you will have some good treatment soon to help with the awful symptoms. I do understand how frustrating it is, though. I was never athletic, but I could at least WALK! LOL I find myself having to stop and rest like a little old lady, and I'm not young (32), but I'm not old yet, darnit!

The thing that has helped me most has been to get lots and lots and lots of rest. Don't push yourself too far, particularly as soon as you feel a little bit better. It sounds like the TTT brought on a very nasty flare for you. I've pushed myself too far more times than I can count, and for me, it always snaps me back to where I was before. I was on a constant decline for a couple of months after my TTT, but that was because I kept pushing myself when I thought I felt a little better. Finally, about 3 weeks ago, I did nothing for about two weeks, tried to stay in the living room on the love seat with my feet propped up. I tried to keep myself from having a lot of orthostatic changes - only getting up to use the ladies room or fix a quick meal. My husband took over everything else - did the shopping, fixed meals, even fixed my salty crystal light for me. I'm still no where near where I'd like to be, yet, but it is much better than after the TTT. It helped me feel stronger. This week I was able to work 3 hours a day from home, which was a big victory for me!

My suggestion is before trying to walk a km, make sure you can walk to the ladies room without major orthostatic symptoms. Next, go for 50 meters, then 100 and so on until you are back to your norm again.

You know, at one point I was excited that I was getting better because my pulse had started to go down, and it was taking a couple minutes to reach the 30+ beats on standing instead of jumping up immediately. So... brilliant me (and I say that with the purest sarcasm) decided to try a poor man's tilt table test, thinking maybe the POTS was going away and the NMH, too! I forced myself to stand upright taking my vitals every minute (pulse and bp). Before I knew it the nausea, dizziness, vision darkening, weakness, shaking, and shortness of breath struck really fast, and I collapsed on my bed, feeling miserable! Because I pushed myself for those 12 minutes, I was down for another couple of days.

Your body went through such an ordeal that it tried to force itself into the lying position by actually fainting. Your organs were deprived of oxygen, and from what I've read on hypovolemic shock (which seems very similar to POTS to me), the episode lasts longer than just the few minutes your organs are deprived. The body actually goes through re-perfusion (meaning the blood is returning to the organs), and I've read (somewhere...) that the process of re-perfusion is actually very trying on the organs (even more than the initial lack of blood/oxygen, also called hypoperfusion). Your body is in a serious healing process right now. Even though you can't see it when you look in a mirror, your insides are healing from a major ordeal.

Remember not to ask too much of yourself right now. Most people won't drag themselves out to the store on their worst day of the flu, and your body is telling you it is feeling just that sick. You'll get better though! I truly believe that!

Hang in there. I really hope you are feeling much better soon! Take it easy on yourself.

(Sorry this is so long... gees, I can't type a short post today! )

[bttrflyamby1981]

How you have been feeling Tessa is how I feel now. I really hope I don't become worse after the TTT. I always wondered if you feel worse after the TTT because your body goes so out of wack (normaly we can adjust enough to tolorate) and it now has a hard time recovering.....so I agree with flop.

Do you know why they made you wait for the results? Is it because he's not very informed or something? The reason I'm asking is because I was told I will have my results right then and they would change or adjust my meds at that time.

It's great we will have our results on the same day though!!

[Tessa]

Thank you for your answers, Deucykub & Amby

All of you have done a great job with your support. I was feeling down, but I am more positive right now. Thanks to you.

I think you are right, Deucykub. You could not have explained it better. My body has gone through a terrible experience and it cannot heal in one day. I never thought about it the way you have explained it, but I would say it is exactly the process I am facing right now.

When my heart rate went down to 60 bpm, thanks to the Beta Blocker, I wrongly thought I was fine. But I have to remember that hours after the TTT (without the Beta blocker) my heart rate was around 100 (horizontal). Therefore, even though my hr is low, my heart is supposed to be working more to balance and recover... I cannot feel the process of healing inside, but there are many organs trying to recover... I should not have walked so much today... I had no idea until my body showed all the symptoms, worsened and I nearly passed out.

Thank you for opening my eyes. I?ve talked about your post with my husband and we are feeling much better now that we can understand the process that my body is going through. It is not just a day of healing after the TTT, it can last for weeks until the body recovers.

It is a relief to know.

Your suggestion is excellent. I noticed I was dizzy on the first days after the TTT when going to the ladies room, even sitting at the PC and typing. A few days later, I did not felt dizzy when going to the ladies room, but only if I kept coming and going from the kitchen to the living room and cooking (standing). I have been able to wash some dishes today without feeling dizzy...

I?ll take it easy from now on.

I have the app. with the Cardiologist on Tuesday. Wednesday is a holiday here, but it is supposed that I have to go back to work on Thursday...

I am so sorry that you are having such a bad time, Deucykub and hope you will feel much better soon. I will try to follow your suggestions. It is good that you can take your time to recover.

Amby, we are sure that the Cardiologist made us wait for the result because he is not very informed. He might be looking for some information on POTS in the meantime and read Dr. Grubb?s report (we gave it to him after the TTT). When I was trying to recover from the TTT and still dizzy, he mentioned we would talk about changing the meds and maybe adding Florinef, Midodrine, etc. Though the problem is that Midodrine is not being sold in Spain...

Isn?t it "funny"? We both have an important app. on Tuesday. I am looking forward to it to share it with you.

Thank you for your support.

Take care,

Love,

Tessa