New To The Whole Thing

[ed.lippman@gmail.com]

I have not been given an official disgnosis yet. Last year a GI doctor described my stomach issues as being dysautonomic. Over the past year, the issues have gotten worse. Now I have all the symptoms of IBS with the brain fog, lethargy, stomach issues, dizziness, tremors and weakness, but they've become much more pronounced but we can find nothing physically wrong. After a bout of antibiotics a few months ago, I developed hypoglycemic symptoms and severe tremors brought on by any kind of physical exertion. Even vacuuming can cause them. I was recently diagnosed with Rapid Gastric Emptying. My endocrinologist figured out my dizziness is likely caused by rapid changes in my blood pressure. Since the antibiotics, there are times where bending over, standing up from sitting or just walking up steps will make me light headed and dizzy.

I'm pretty sure this has developed into POTS. And it gets worse every time I'm prescribed antibiotics.

I'm trying to find a physician in Los Angeles covered by my insurance who believes in dysautonomia and POTS. There are a few people here but I have to work my way through the system before my insurance will cover them. My primary physician agreed to refer me to Dr. Friska Yango. I'd read about her on line and figured it would be a good place to start.

I'm currently on disability. It began as a stress and anxiety leave and was just extended. Now with the possibility of POTS, I'm very nervous that it may be longer term. I do not want that. The career I've had for the last 20+ years is very stressful. There is no way I can go back to work doing what I've been doing. At least not yet. I've begun looking into graduate schools as a way to change my career and reduce that stress.

I'm trying to maintain a good attitude but it's difficult. Four years ago I was a semi-professional dancer. I had to stop that because of tremors and weakness in the legs. Then I had to give up swimming. I got into biking and loved it and was doing well until the antibiotics. Now I can't even think of getting onto my bike. Within moments of starting a ride I have pronounced full body shakes. Some days walking up the stairs to my apartment is enough to make me lightheaded. The loss of the dance is the thing that tortures me. I loved it and was pretty good for someone who wasn't a full-time dancer. Having to stop that hurts. I would love to be able to go back to class some day and take a barre without feeling like my legs were going to turn to jelly under me after only a few moments. I miss that one the most.

It's been a long road. It started almost 9 years ago as dizzy spells after anitbiotics for a severe sinus infection. Over the years it's become worse and worse, impacting the quality of my work, effecting most decisions I make on a daily basis. The idea of finally having a tangible diagnosis is wonderful because now I might have something solid to work with. The idea of this diagnosis is not appealing.

I refuse to give in to this. I keep my bike sitting in the hallway to remind me that I will one day (soon I hope) get back on it again.

That's me. That's my story. Hoping this site can give me some guidance in how to cope with this and eventually heal.

Ed

[skiberthoud]

Welcome! I'm sure you will be able to find hope and help from this forum. I commend you for your positive attitude. I agree that it is entirely helpful! Being negative helps nothing. I hope you are able to find a doctor who is knowlegable and helpful and that you are able to find things that help you maintain the best quality of life possible - your attitude will do much for that! Keep that bike there - it defines you more than your "illness."

[sue1234]

Welcome. First off, when you say you have hypoglycemic symptoms, have you documented low blood sugar at these times? Or, does eating get rid of those symptoms? That is important to know. If you truly have hypoglycemia, you need an endocrinologist to work that up and see what's going on. If they can figure that out, it may eliminate some of your symptoms.

Let us know how all your investigations go.

[issie]

Welcome. You will enjoy it here with having people that understand what you're going through. I'm sure you will find SOME of the answers you're looking for.

As far as your illness. Have you tried probiotics to put the good bacteria back into your body? When you take antibiotics, it imbalances the bacteria, both good and bad. The bad seems to take over and then you really get sick. You may need to work on a possible yeast problem and getting the gut ecology in better shape by the probiotics. Kefir is also a good thing to drink to put back the good bacteria.

I have the tremors and shakes too and don't really know why or what to do for them. I'm assuming it's due to an adrenal surge that goes along with the dysautonomia. Some people have found propronolol to be beneficial for this, I know it also calms the nervous system. Sometimes it's given for anxiety, so it would calm down an adrenal surge. I plan to find a doc. and try this one.

I miss dancing too. One of the biggies for me is singing. I no longer can. When I try to sing, it brings on an attack and I get light headed and dizzy. Talking sometimes will do this to me. It's so frustrating. I loved to sing and dance and now it's just not possible. Maybe SOME DAY.

Hope this helps a little. WELCOME!

[ed.lippman@gmail.com]

Sue1234: I was seeing an endocrinologist for the blood sugar. There were a few times we documented low sugars with the symptoms, the lowest being 56. Those were fixed by eliminating certain simple starches from my diet. The majority of the times the symptoms had no connection to blood sugars. My sugars were in the healthy range for those times. These attacks remain a mystery. CT scans show nothing wrong with the pancreas.

The endo's been great. He still teaches so he's into the mystery of it. He's been calling on weekends with ideas and is referring me to a top GI motility guy in LA. Thank god for this guy!

issie: The endo also did a Cortrosyn study to see if there was anything funny happening with my adrenals. They came back normal. I think the adrenal surge thing is right on. That's what it feels like, but the test showed nothing. Curious what it would show today. I've felt shaky and anxious all morning.

I've had to back off on the probiotics. I only take them when I really need to. They make my digestive system speed up which aggravates the shakiness I get after a bowel movement. With the rapid gastric emptying, I need to avoid things that speed up my digestion.

I didn't mention earlier, one thing that will bring on the shakes and lightheadedness is any activity that involves lifting my arms above my chest. If I try to get something out of the closet, I have to make sure I've got something nearby I can grab onto because I'm definitely going to get lightheaded. I've always had very low blood pressure. Curious if there's a connection. Sometimes washing my hair is enough to do it.

Yeesh!

[issie]

What about using fiber, like Beneifiber, to give some bulk. Would that help? I know you need to get the good bacteria in there. Try drinking the Kefir. At one point, I had ulcerative colitis, so I know about the loose, frequent runs. (Literally) It is no fun. The kefir and probiotics helped me alot. Also, getting off of wheat and sugar.