Stormie74

After being a very fit person, I am with this disease, dealing with all the symptoms.... and gaining weight!! I have been sick for about 6 years, but since 3 years ago I can't stop of gaining weight, no matter what I eat, I have always eaten weel, taking care of what I eat, usually healthy things, almost nothing of animal fat... etc....but keep going up on weight.... now I am in the same situation before I was diagnosed with dysautonomia, nutriologist I have seen they simply can't belive I can't lower my weight, or don't belive I follow my diets..... I am now, 10 kgs overweight..... and it seems nobody can help me..... at least to understand why..... I wonder if this thing also comes from dysautonomia. I am thinking on see a bariatric doctor.... anybody with the same problem?......

Now, I am taking efexor (18 mg), and concor (bisoprolol 1.25 mg).

I have had the same problem... and this October will be having bariatric surgery. I am hoping to see marvelous results that will have me so much healthier! HAs anyone else on here had bariatric? Can you let me know how it went?

Has anyone on here taken Macrodantin? I read that one of the symptoms is dizziness, but holy cow, Batman! I thought POTS made me dizzy, but this stuff is crazy on top of the POTS! I'm so sensitive to medications, particularly antibiotics, and this was one of the few things my doc could try to get rid of a UTI.

Your thoughts?

I ALWAYS have a problem with inflammation. Always. Doctors are always alarmed by my high C-reactive Protein results. In fact, I have an appointment tomorrow to find out what it is now... just had it taken a week ago. Interesting article!

Hi Noreen!

Welcome to the group! This has been a great place for me to find a lot of information and, even better, people who understand and accept me for who I am. Never hesitate to ask a question. We might not know the answer, but we'll be as helpful as we can.

Hugs,

Caron

Yesterday I had a terrible time staying awake. All afternoon and evening, I fought the sleep monster. Couldn't focus on anything, not alert... complete fog, then sleep. Hubby made us a delicious dinner, and I have no idea what we talked about, I was fighting to stay awake. This morning, I still feel foggy. I took my temperature when I woke up... 97.0. No wonder I'm so foggy! I read somewhere that an iron diffiency can contribute to this. Does anyone know anything more about it? I'm not sure how I'm going to stay awake at work today!

Caron

I get dizzy riding the escalator. I'd love to ride a horse, but don't dare with this POTS.

I went through a few months of if I laid on my left side my heart rate would go real high and then if I turned over it would settle down. I dont know why it happened but it definitely happened! Of course my doc looked at me like I was from Mars and I just chalked it up to the lovely world of dysauto!

KC

You're not alone... mine does that too!!!

After being a very fit person, I am with this disease, dealing with all the symptoms.... and gaining weight!! I have been sick for about 6 years, but since 3 years ago I can't stop of gaining weight, no matter what I eat, I have always eaten weel, taking care of what I eat, usually healthy things, almost nothing of animal fat... etc....but keep going up on weight.... now I am in the same situation before I was diagnosed with dysautonomia, nutriologist I have seen they simply can't belive I can't lower my weight, or don't belive I follow my diets..... I am now, 10 kgs overweight..... and it seems nobody can help me..... at least to understand why..... I wonder if this thing also comes from dysautonomia. I am thinking on see a bariatric doctor.... anybody with the same problem?......

Now, I am taking efexor (18 mg), and concor (bisoprolol 1.25 mg).

Ana,

I can REALLY relate to your post (that I just read). I am on Metoprolol, and so much of my added weight is water weight! I am also doing research into bariatric surgery (duodonal switch). I try to get to the gym three times per week, but have to use the weights and recombant (sp) machines as the treadmill nearly kills me. People keep saying "Count your calories," "watch the sugar," "watch the carbs," etc. like it's MY fault. Everyone who knows me tells me I eat like a bird.

Caron

This Dr. thinks everyone with Dysautonomia has an underlying infection whether it be Lyme, Mold, Heavy metals, etc.

Dustin

I'm pretty sure I have an underlying infection! I feel 95 percent better when I am on Augmentin (antibiotic). I've been tested several times, and I am a strep carrier. No, not strep throat, but strep throughout my system. It shows up in blood tests all the time. Sure would love to have the work-up that you have had. It would be very interesting to know all the details of all those tests!

Caron

Lieze,

Your symptoms sound very familiar! The longer I am on my feet, the more light-headed I feel, sometimes feeling like I'm going to pass out. My symptoms usually start by feeling like I have lots of gas - which is usually the case. I can burp up a storm! It feels like my stomach is pushing up on my lungs and heart so hard I can't breathe. I had that problem Sunday in church. It was my Sunday to go up and read the scripture, too... I got to the potium, opened the bible, read one sentence and felt like I had no air to go on. I stopped and tried to catch my breath, smiled, and kept going. Fortunately nobody noticed.

Stop the very hot baths!!! Those are not good for you. I also find that I'm better when I get up and move around. It keeps the blood moving, and if the gas is a problem, it will help move that around, too! Tums are my best friend.

Hang in there!

Caron

Regardless of my position (on my back, on my side, or on my stomach), I normally have difficulty breathing (along with bad chest pains) while lying down, thus making going to sleep very difficult (why I am writing this at 1:30 am when I need to be awake by 8:00 am). I feel like I am suffocating, and it only is relieved when I sit back up again. I currently can't raise the head of my bed, as it is part of a bunk bed and would be too unbalanced to raise up. Does anyone else get this, and if so, do you have any tips on how to deal with it and maybe help my breathing and chest pains?

I am a "strep carrier" and when I have a flare-up (not strep throat) I get that way. Once I start taking an antibiotic to kick it in the butt, I don't have the night breathing problems anymore. Also, I find that when I have problems breathing any time of day or night, I am usually retaining a lot of fluid... rings are tight, shoes are tight, face puffy, etc.

I feel worse the longer I am vertical. If I am lying down or sitting, I seem to be 80 percent better than being on my feet. I get so dizzy and spacey when I'm up for very long, and develop this fear of losing control that makes me panic. I don't want to pass out in public or at work... I don't want to end up with someone calling an ambulance for me when I know that usually the lying down will FIX the problem!

I had the severe shortness of breath this time last year. I was diagnosed with POTS after a TTT, and am now on Metroprolol, which helps. But I still get times when the shortness of breath comes back. For example, I was feeling really good Saturday. We had tickets to the symphony and decided to go to dinner first. Went for Chinese food, which was yummy. Then we went to the symphony and had to park a little ways away. I could hardly breathe walking to the door! Hubby kept his eyes on me and held my arm. We went inside, gave them our tickets, and sat down in the lobby so I could catch my breath. It took quite awhile, and we finally left and missed the show. I was up most of the night... couldn't sleep and felt terrible. Sunday, I slept most of the day.

I have to fly to Orlando from Michigan for a work conference in another month. I've heard that flying is not good for people with POTS, but I don't have any other option, as it's for work. Any suggestions? Have you flown? How did it bother you?

Thanks!

What a fantastic idea!!! And they are so small, they would fit easily on your keychain or necklace. It would be perfect for hospital staff to look at, but not be immediate help for the EMT if you had to get emergency help. But it's a super great idea!

Yes... I tried it about three years ago. I felt great for two weeks, then got a SEVERE rash from top to bottom and felt horrible. Doctor took me off it right away, but it took three weeks for the rash and other symptoms to go away.

Yes, that happens to me as well. My body tells me when I've had enough!

I am up to 8 minutes myself on walking. Then I get that dizzy, lightheaded feeling and have to stop.

I have POTS and am gradually working on increasing my time on the treadmill at the gym. I've been working on the weight machines too, slowly increasing weights in hopes of "decreasing my own weight."

I notice when I'm on the treadmill that the palms of my hands turn a bright red, and it takes a few minutes for them to return to normal.

Any idea what's up with that?

I'm only walking 6 or 7 minutes right now... doesn't seem like much, but it is a huge improvement for me.

I wish I didn't have so many allergic reactions to antibiotics! It seems like no matter which one I take, I get a reaction to it. I'm a strep carrier, so I get strep problems all the time. Feel better!!!

Caron

I've had a terrible time with reflux. For years I was on Nexium and then Prilosec, and it helped. BUT, my Endo had to keep increasing my thyroid meds because of the changes in my digestive track due to taking the meds to control reflux. She said when you are on meds to change the ph of your digestive system, it alters how your body absorbs nutrition and meds. Now, I only take a Prilosec when I need it, and I find I'm better if I take it before I go to bed rather than in the morning. I also find if I don't need a Prilosec at night, it helps greatly if I take 2-3 Tums just before bed. I sleep much better with very little reflux.

Caron

I am on Metoprolol (Lopressor) and it seems to really help.

Caron

Standing up and waving hand. I do! I have a desk job.

Yesterday I got the results of my Cortisol Stimulation Test. It came back normal, which I guess is good. So we don't know WHY I have POTS, only that I have it. What's the next step?

Caron

From what I've heard and read, adequate sleep is important for POTS patients.... Why is it that being just a tad sleep deprived sends some into a tail spin?

Maisie

If I get too little sleep, I am a mess. But likewise, if I get too much (like on a weekend), I am just as messed up!

The same thing goes if my eating schedule is tweaked! If I sleep in a little longer on the weekend or alter my eating, yikes! I feel like I have to watch a clock all the time.

Caron

Rachel,

Her response to you was totally uncalled for.

I am a former elementary teacher, principal and university instructor. I have lots of experience dealing with other teachers, parents, administrators... well, you get it. Under NO circumstances was her response appropriate, either about talking with you OR about your child.

Step 1: Go to the person who spoke like that to you and tell them calmly how what they said made you feel. They need to first hear it from you. If you don't get satisfaction, then...

Step 2: Go to the building principal, and let him/her know what happened, and that you have gone back and spoken to the person responsible. Explain again how it made you feel, and how inappropriate it was. Have a conversation with the principal. HOPEFULLY, he or she will be compassionate and things will go well. If they do NOT go well...

Step 3: Go to the superintendent. Repeat Step 2.

Here's why you need to start the whole thing with Step 1: You always want to be on a good rapport with the child's teacher. Always. Never go above the teachers head without first speaking with the teacher. That sets you up for a struggle for the rest of the year with that particular teacher, and more importantly, teachers talk to each other. The next year's teacher will hear the story, and on and on.

BUT, if Step 1 does not work to your satisfaction, then by all means go to the next step up the ladder.

Let me know if you need help!

Caron