New to forum

[carmen]

Hi everyone,

Recently I have been going through a rough time. I am a teacher and I started having these attacks while I was teaching. What would happen is I would get extremely lightheaded, my vision would go blurry, my hearing went muffled, I felt like I was losing control of my whole body. I felt like I was going to pass out or die. I was shaking and sweating. It was a terrible feeling!

These episodes started happening more often. I went to the doctor all the time, we checked for blood sugar problems, panic attacks, and all sorts of other things. Then we started to monitor my pulse. We realized that upon standing, my heart races to around 150 bpm. I never noticed my heart was racing through all of this, I just knew that I felt awful.

So I had several ECG's taken, and I wore a holter monitor. I had another attack a couple of days ago, this time I had chest pain too. I felt like I was going to die. It was so scary. I ended up staying in the hospital for 2 days. The cardiologist did an ultrasound of my heart and after being monitored for 2 days, everything was normal. Well, of course it was, I was lying down the whole time. When I stood up, my pulse would go from 80 to 130. My blood pressure sometimes gets lower upon standing too. But the lightheadedness does not happen every time my heart races upon standing. the lightheaded attacks where I feel like I'm going to die come out of the blue (usually after I've been up for a while, or have had a normal day).

The cardiologist has ordered a tilt table test for me. I asked him if what I had could be POTS, he said it could be (but I didn't get the feeling that he knew what I was talking about). He didn't take the ultrasound while I was standing up either.

So I was sent home from the hospital, and I still don't know why all of this is happening!

I am feeling so frustrated and discouraged at this point, and am questionning my sanity. THe doctors can't find anything wrong, yet I am totally debilitated because I feel so awful. I am terrified of having those attacks, and the doctor has told me not to work or drive a car or be alone until we find out what is going on. the doctor also gave me a beta blocker called metoprolol. This has slowed my resting heart rate from about 100bpm to around 75.

The morning time for me is awful. I feel like a truck has run over me when i wake up. I usually sleep all night very well, but when I wake up I feel awful! I try to stretch before I stand up, and then by the time I walk to the bathroom, my pulse has gone up to 140bpm. I get extremely shaky, feel nauseaus, and need to go lay down again for fear that I will pass out.

I have been off work for 2 weeks, and it is not looking like I will be going back to work any time soon. Nobody around here (I live in saskatchewan, canada) seems to have ever heard of what I'm experiencing, and I feel like I am losing the respect I have earned because people are skeptical about what I'm going through. Most people around me think it's stress.

I never had these feelings before. I had a terrible stomach flu at Christmas time and it has been happening since then. I am so scared and frustrated and the only thing I could identify with was POTS. Can somebody please tell me what happens to them when they have an episode? How do you feel all the time? How do you carry on a normal life? I need to know how to cope with this, I am getting married in 4 months and I love my job. I just want things back to normal. Is there a cure for this? Please help, anything would be appreciated.

[sally]

Hi Carmen,

Sorry to hear you feeling so badly, I'm new this forum as well but felt I had to write you. I can relate to what you are feeling as well as many on here I'm sure. It is a frustrating journey to find out what exactly is wrong and then try to fix the problem so a person can function somewhat normally (whatever that is). We have orthostatic intolerance problems in our family as well as Ehlers Danlos Syndrome and both can make you feel terrible. Hopefully once you get your tilt table test they can figure out which medication will make you feel better so you can get through your day teaching. We also experience the increased heart rate to the point of breathlessness and having to lay down frequently.

I've dealt with this almost my whole life feeling like this and it wasn't until my daughter started displaying the same symptoms that we were lucky to finally find the right doctor to find out why. Doctors in my past didn't have a clue what was the matter with me, so I finally gave up trying to figure it out and adjusted my lifestyle around my body which means I work only a few days a week and slept alot. We don't plan any activity in the morning hours only in the evening when I feel better.

We now (after diagnosed) are taking a medication called midodrine which helps us function and have more energy, I only take it in the AM (which is my worst) but our girls take it all throughout the day (3x) just to feel normal. We had the TTT to find out and I am so glad we did it even though it was not a pleasant test, it is necessary. Another aspect of this is (in some people) is what you are eating in the morning hours may make the symptoms worse. I had to cut out all carbs & sugars in the morning and eat just protein, just until I leveled out. The carbs were causing too much digestion to occur which pulls blood into your intestines and away from an already low source. I noticed a big difference in symptoms when I changed my eating habits in the AM as well (although sometimes I cheat with this but usually pay dearly for it) Pancakes for example are a killer for me in the morning, it messes with the blood pressure and blood sugar at the same time. I would be ready for bed and had trouble functioning about an hour after eating it. But check with your doctor on this and keep a record of what you are eating and compared to when you start noticing symptoms. I don't think this happens to everyone but for me it causes an increase in my symptoms.

Good luck and I hope you feel better soon.

[Michelle Sawicki]

Hi Carmen,

Probably most everyone on this forum has been through a period where they were frustrated, discouraged, and possibly questioned their sanity. These disorders have so many odd symptoms, and few doctors understand them.

One thing I have found that helps me greatly is drinking a glass of water before I get out of bed in the morning. Also, like Sally, I avoid sweets. Compression stockings help too.

There are several different meds that are used to treat these disorders. Beta-blockers work for some, but not all. There is a list of meds on the "what helps" page of the www.dinet.org website.

I know there aren't many docs in Canada that treat dysautonomia. If you can, I encourage you to see one of the doctors that does.

Best wishes,

Michelle

[MightyMouse]

Hi Carmen, I just posted a bunch of links geared toward newer members or newly diagnosed folks. You may want to check them out to see if they seem to match what you're going through. Here's theh post:

http://dinet.ipbhost.com/index.php?showtopic=220

Welcome to our board and I hope you find information that leads to you feeling better. Nina

[MomtoGiuliana]

Just wanted to say that your experiences are very similar to mine. I was told I was having panic attacks for months before I was diagnosed with POTS. When I told my general practitioner and my ob/gyn some of my symptoms, they acted like I was being an extreme hypochondriac and insisted that nothing was wrong, except that I was depressed and anxious. I also experienced the isolation I think you describe--people in your life turning away from you b/c they think you are having some kind of bizarre mental stress reaction.

It must be particularly difficult to have these symptoms in your profession (I worked as a teacher, too, for 4 years).

POTS patients do tend to feel worse in the AM (as you describe).

The good news is that most people with POTS do eventually recover to a functional level. How long that takes will vary from person to person. I was out of work for almost a year.

Your attempt to educate yourself on this condition will go a long way to helping you improve your health (if indeed this is your condition)--as will finding a specialist who understands how to detect and treat it.

Best wishes.