Tessa

Hi

I love music. I used to be a person who was unable to listen to music without moving part of her body... And loved to dance until late at night (stopping to rest, eat, drink, etc.)...

On a Christmas Eve some years ago, we had a nice family party. We danced for a while and everything seemed to be Ok. but then, the following day, I felt sick (you know all the symptoms we have with POTS)...

I had no idea about POTS but my body was telling me that I could not dance... (That was the first step to a Potsy life of disabilities...)

It has been very sad for me not to be able to dance anymore. I felt so sick that day (The whole day in bed, unable to move, dizzy, with nauseas, headache...) that I had not dared to dance again... until today.

Today (while I am without treatment because I am waiting for a special blood test), I could not resist to dance slightly during (about 30 seconds)... Suddenly I was feeling my heart beating too fast and decided to check my hr: 95 bmp (this has not been this way for a long time as since the treatment started my hr was about 60 bmp at rest)...

Isn?t 95 bmp not a lot just for a little dance of 30 seconds?

It might sound stupid but dancing is something that I miss a lot. I know, I should not have danced. In fact, sometimes I even cannot keep standing without feeling dizzy, lightheaded, with chest discomfort, etc...

What about you?

Can you dance?

Did you dance before and how do you feel not being able to dance again?

What do you feel when you dance?

Comments are welcome.

Thank you for participating.

Take care,

Tessa

P.S.: With regard to the poll, I hope to have selected the most accurated answers, but please, feel free to improve it. thank you.

Hi

I am on a beta blocker (bisoprolol) twice a day and it helps lowering my heart rate.

It is working well. Now my hr is about 60 and although it increases a little on standing, never as when I had no betablocker.

Tessa

Hi Cardiactec

I am so sorry to know that you have that bad last weekend, but hope you are feeling better now.

It seems that they are close to something important about your health. I hope you can get the clues to deal with it as soon as possible.

Take care,

Tessa

P.S.: Happy Thanksgiving to you all!

I was the one who posted about gluten free diets recently. Thanks for asking some of the questions that are also on my mind. I've been gluten-free since last Sunday and I definitely had really bad gas for the first few days. Though it was bad before I started the diet, it was even worse after I started...though now it seems to have calmed down. My hormones are raging all over the place and I'm having strange cravings - cravings for carbs, but also for red meat and lamb chops, which I never eat at home. I'm still eating a fair amount of carbs - corn, potatoes and rice. I haven't really see any improvement in my POTS symptoms or energy level so far. Unless I see some effects soon, I'm not sure how long I will be able to keep this up, especially with the holidays coming up...so I'd really be interested in getting input from anyone else who has tried this diet. Good luck with your diet!

-Rita

Hi Rita

I am following a gluten and dairy free diet for about 2 years.

First of all I would like to point out that many of the products sold as gluten free contain a minimum percentage of it, which is supposed not to harm those who have a sensitivity to it. The best is to use products naturally free of gluten (not processed meat and fish, eggs, vegetables, rice, fruits, etc.)and/or to take the less possible products manipulated by others, because some of us are very sensible to even a small amount.

Starting a gluten free diet does not mean that you will be fine the following day. Think about all the time you have been eating and drinking gluten. Your body needs time to heal.

According to the doctor I had, very likely I would feel even worse when starting the diet.

If I got it right, this happens because on one side the body is wrongly used to gluten and on the other side the change produces many different effects.

Before the diet, I had problems with gases most part of the day. Now I use to have gases when I eat or drink gluten. Some food produce gases too (even if it is gluten free).

I know people who felt better 1 year after starting the diet, others started about 6 months later.

I felt better just a few days later.

With regard to my energy and hormones, I am having problems and have asked for an appointment with an Endocrinologist. But that?s supposed to be different to my gluten and dairy problems...

I hope that this information can give you a light on the gluten free diet.

Take care,

Tessa

Sorry about that, but glad that you have been able to know. At least you know what to do now and what to avoid.

I hope you can control it.

Take care,

Love,

Tessa

Keep crossing my fingers and sending possitive thoughts to you, Melissa.

I hope you can get the best and appropriated treatment to resolve this as soon as possible,

Take care,

Love,

Tessa

Glad about your possitive meeting, Flop and hope that you will get to the most suitable treatment after an accurated diagnosis.

Thank yo for sharing your experience. It really gives hope.

Love,

Tessa

Sunfish!!!!! So happy to see you again (read)

I was wondering about your health when I saw your post. Glad to read un update, though I am sorry that you are feeling unwell.

Always thinking on new and old members, even being ill. You are a saint.

I keep you in my thoughts and hope you can feel better soon.

Take care (I know you do)

You are a possitive fighter and winner.

Hugs and love,

Tessa

I am so sorry

Do you know why you have the migraine? Sometimes it is related with a stomach issue... Even though, can you try going to another doctor? Maybe your GP can suggest something... I wish I could give you the best solution.

Hope you feel better soon,

Take care,

Tessa

I am so sorry that you had such a reaction, ending again at the ER.

I hope you are feeling better now.

Take care,

Love,

Tessa

I have no overprotecting problem.

I lack of words to express my husband?s support. He helps whenever he can and leaves me doing what I can. He uses to be the first to know when I am starting to feel bad (sometimes even before I am aware of!). He is always close, but not overprotecting.

On the contrary, my parents think that I am healthy and do not want to accept this "illness".

Well, what can I do? They use to deny having a cold...

My husband is the only person of my family who helps at home and cares about me. He is the only one at my side, supportive, patient,...

I am very lucky.

I drink Aquarius (similar to Gatorade I guess)

Really helpfull (though a lot of sugar, that is true)

Except the Manometry, I have been through all the tests you mention (some of time even twice) and I can assure you that your doctors seem to know exactly what they are doing and therefore, I am quiet sure that they will take all the precautions needed.

The best suggestion for all the tests is not to be nervous. Tell her to think about something nice while doing them and to remember how important they are for her health and wellbeing.

Furthermore, it is very important to know that someone cares about you while you are having the tests done. With your love and care and the doctor?s care, I am sure that she will be fine.

Please, keep us updated,

Love,

Tessa

Good luck Cardiactec!

I wish you the best

Love,

Tessa

Thank you for the update, Emily

I am glad that you she has no fever and hope that they will get the treatment needed to help her recover as soon as possible.

I will keep her in my possitive thougths and prayers.

Hughs for you, Melissa

Love,

Tessa

You know you have dysautonomia when...

Your doctor writes an official Medical Report forbidding your teachers to take you to the Church because you pass out everytime you have to listen to the Mass standing...

Nurses are this way everywhere, Nina... I got a similar experience...

You know You have Dysautonomia when...

after getting multiple readings on the hr monitor that indicate your pretty much dead, while you're still talking, the nurse proclaims "this one is broken", gets and new one, puts it on and gets the same reading, then says "this one must be broken too...

Hope you can get some answers from the tests and/or the doctors, though never forget that no one will know your body and your symptoms/reactions better than yourself.

Try to rest a lot these days, increase fluids, check your bp and avoid stress...

Take care,

Love,

Tessa

I wish I were there to give my support and help.

Send you a big hug from Spain.

I will keep you in my possitive thoughts and prayers, Melissa.

Take care,

Love,

Tessa

Thanks for the information & updates Nina & Emily

I entered the forum today to take a look and came across this sad news about Melissa.

I am so sorry that you has gone to the Hospital again but at least they will help her there to recover.

Dear Melissa,

You are in my thoughts and prayers. Rest and give yourself the time to heal. You will be soon swimming again in your bowl.

Take care,

Love,

Tessa

Hi flop

Of course you are not "nasty". All your comments (and the suggestions of others) have been most helpful and not "nasty" at all. Please, do not apologyze for giving your opinion. It is what I asked for

Now I know how important it is to determine if it was a bad reaction or an allergic one and that the notes from the ER are not enough to confirm it.

If it was a bad side-effect, it was really scary and it it was an allergic reaction, well...It was scary no matter the reason. The most important is knowing for acting in the future.

Thank you and all for taking your time to answer my doubts.

As mentioned before, I promise to keep you all updated after my tests next month.

Take care,

Love,

Tessa

Thank you Flop

Your answer resolves many doubts and questions that I had and makes me feel more comfortable, even less worried.

You are right, the Nitroglicerine was given when tilted and was used to provoke the fainting.

Now I understand why the allergist wants to carry out the test, as if they were only bad reactions to the drugs, it would be "more or less" safe to use them if needed. Therefore, I assume that he wants to rule out and/or confirm. It is thus very important to see if it was a bad reaction or an allergic reaction...

All your help has been most helpful for both, feeling less scared and less worried, as well as to better understand the testing and the need of it.

I promise to keep you all updated on the testings and the results.

Love,

Tessa

I have been reading some latests and new posts and found the one talking about chest pressure and breath discomfort...

It all started months ago. From time to time, I had chest discomfort. Episodes increased gradually and the more time I was standing, the sooner I got that feeling and pain and had to sit down or lay down. But it had never happened while sitting. Even though, when the pain started it was more and more hard to cope with.

Then one day, at work (my collegues used to smoke at work by that time) I started with the same feeling. Chest pain and shortness of breath. Breathing in made it worse and I could not breath in deep because I got such a hard chest pain. It became unbearable and we called my husband to take me home. I thought it would go away after resting for a while, but while we were in the car going back home and my husband asked me if I prefered going to the ER, I accepted.

At the ER they did a blood test and a Xray and I had an inyection.

They said I had Pericarditis and prescribed a treatment + rest at home.

Other Cardiologist have seen the same Xray done at that time and said they did not see Pericarditis, but I still wonder what it could have been, as I have the same problem from time to time (but not so accute).

I can still not take the stairs up or I will feel out of breath, with a fast hr (faster than it should) and for a longer time, and chest discomfort... But I have not had it again while resting.

When do you get the chest pain and shortness of breath? Is it walking, at rest, sitting?

What seems to be worse is my sensitivity. I feel as if I am hypersensitive now.

For the first time in my life I scared the other day, while I was cooking. A teaspoon fell on to the floor closeby and I felt as If I was going to pass out. It happened quite fast: some Pre-syncope symptoms and... I had to sit and calm down.

I am on Licorice Root (= Florinef) and a Beta Blocker.

Love,

Tessa

Nina, I also got my hair cut shorter than usual this summer for the same reason.

This could have been an excellent poll.

Interesting question as well as the answers.

Yes, I usually have more gas when I am going to have / or having an episode.