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Finally saw Dr. Yan Go at UCLA. She was a wealth of information. She asked me to get a BP monitor so I could do my BP in the AM laying down, then stand up and take my BP again. She wants me to track BP over two weeks to see if there's any drops or weirdness going on. She felt this is more accurate than a tilt table test. This morning I took my BP. When I got up, I was really dizzy. My BP shot up but the pulse was exactly the same as laying down. Is this normal? Should it have gone up as well?

Which SSRI's help with your symptoms? I used Effexor years ago and had no problems. I tried it again recently and had to stop after two days due to side effects. Weird because I don't recall having those issues before: chest tightness, extreme fatigue, stomach upset. Celexa works great but after 3 - 6 weeks it feels like it eats a hole in my stomach and I have to stop. Which SSRI's have helped your symptoms?

Mack's Mom: Thanks for the Dr. Rowe document. I learned a lot reading it this morning! Very thorough.

Tremors are one of my worst symptoms. I was told a year ago it as an essential tremor. Back then it was just in my hands. I also was experiencing weakness in my arms with the tremors. Over the past year they've gotten a lot worse and they've spread to all of my limbs. It takes very little to trigger them and has forced me to cut out most physical activity. It's been brutal because when it hits, it can either be just an annoyance or it's so pronounced I wipes me out and I have to go lay down until they calm down. I suspect mine are tied to my Rapid Gastric Emptying. I think that when I start to get active, my digestive system somehow kicks into high gear. I think that's what's really driving my tremors. Hopefully a new GI Dr I've been referred to will be able to help me figure this one out. I do notice they are worse after eating high-carb foods, sugars or not getting enough sleep.

I was wondering if trying a cleanse or detox would be a wise thing to do. If so, is there one that's recommended? My symptoms are always so much better when my system is clean but how to clean it without causing more harm? I had a colonoscopy a few weeks ago. The prep was really tough but for a few days after I had no symptoms at all. But once my system got back to normal the symptoms started appearing again. But for about three days I felt like my old self again.

Thanks for the ideas. I made an appointment with my primary physician for Monday. I plan on telling him that I need the disability extended and see if he can do it for me until I finally get into a neurologist. I chose to cover my bases. Neither neurologist can see me for some time. I'm on a wait list for Dr. Yango, maybe as soon as late September. I made an appointment with the old neurologist who also can't see me until late September. I figure if Yango's office calls I can cancel the other one. Thanks for the advice!

I've been waiting for a referral to come through to see Dr. Yango at UCLA. It's starting to look like it could be months before I can see her. My disability insurance is making noise that they want an official diagnosis. I'm nervous they might cut me off before I get in to see Dr. Yango. I already have a referral to a Neurologist I saw in LA several years ago. I'm wondering if I should go to him in the meantime to try to get something going treatment-wise. I'm not sure about this guy because he's a bit gruff and I doubt he gets the whole POTs thing. Last time I saw him he said it was stress and it would go away in time. Well, I'm no longer working so that source of stress is gone and it's only gotten worse. Not sure I trust him but he may be the only thing for the time being. Thoughts? Advice?

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!

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