violahen

Hi Beverly: Dr. Grubb has a great facility and can do whatever tests might be needed. He is also an excellent listener and does prescribe based on what I tell him I am experiencing. When I first met him I brought my entire chart which is bigger than the phone book(!). He looked over the entire thing. He also spent several HOURS talking to me and gathering info about me. I have also had tests run at the Medical College of Ohio where he is based. I can't say enough good things about him. He is an incredible doctor and an incredible human being...so caring and compassionate. ALSO, he is very dedicated to disautonomia research and always knows about the most up-to date data and info. Many of the medical reports written about POTS/disautonomia are written by him. Best wishes! Kristen

Hi Beverly: I had taken beta-blockers on a consistent basis for a period of many months. During this time I would experience the "rebound" effect...it would help to slow things down at times, but other times I literally felt like my body was saying "no" to it and fighting it by sending me into hugh adrenaline rushes. After discontinuing a regular schedule of beta-blockers I began taking it "as needed". In other words, if I was having an adrenaline "attack", I would take it. Usually within 30-45 minutes it would slow things down. The only problem was that I would then slow down too much. I no longer take any beta-blockers. They just don't work for me. (By the way, I also tried Toprol. It did not help me....this was several years ago.) Another thing to consider is the amount of time the drug is in her system at a given moment. It depends on the beta blocker, but some stay in the system for a very short time. For example, inderal stays in the system for only a few hours. At that point it would still be likely to have adrenaline rush problems. Considering how sick your daughter seems, I wonder if you are getting the best care possible. The only reason I ask is because for years my docs in San Francisco told me I should go to Toledo to see Dr. Blair Grubb...I was too scared to hear what he would tell me. However, two years ago I moved to Ohio and felt I had no excuse but to see him...He has been an absolute godsend for me. He is not only brilliant and knowledgeable about all of this stuff, but he is also so tuned into every aspect of living with this type of illness. Next to my husband, he is my BIGGEST source of support and hope. Good luck! Kristen (violahen) before it beta-bloc

Hi: I used to take beta blockers many years ago for POTS. I finally gave up on it. I definitely slows things down....(for me it was too much so.) But I also found that my body would have sort of a "rebound" effect at times as well. It seemed to be fighting what the beta-blocker was trying to do and as a result my body would do the adrenaline-rush thing that you describe. Don't give up though! Wishing you all the best, Kristen

Hi: I am new to the forum, and LOVE it. What a great outlet! Thank you ALL for your participation. I just wanted to let you all know of a product I have discovered that really seems to help me with hydration and electrolyte issues. It is called Hydralyte. It is a Gatorade type product but without so much of the sugar and additives. It was designed specifically for people who need to replenish fluids and electrolytes FAST. It comes in a powder form. You just add water. I found it online...if you do a Google search for Hydralyte you'll find it. You could probably find it in some health food stores as well. I have real issues with keeping fluids and electrolytes in check. My body doesn't seem to be able to regulate electrolytes at all anymore, so this stuff is a big help. If you have similar issues, I REALLY recommend it. Kristen

Hi: These sound like typical POTS symptoms to me. I have had many of this type of episode...always at night in bed. My body tends to be extremely sensitive to postural changes like lying down. I know lying down is supposed to be helpful, but my blood volume and BP tend to be so low that lying down is problematic. It just makes everything even slower/lower. Ther body's reaction is then to try to conteract it....that's where the racing heart comes in. The disappearing veins sound like a drop in blood pressure. For this all I can suggest is super-hydrating yourself. Drink A LOT of fluids. OFTEN. This can help boost up the volume. In terms of the postural stuff. I ALWAYS need to lie down with at least two pillows under my head. I actually can't lie down with anything under my head without fainting. I recently found out that the reason why is because my heart actually STOPS beating if I lie flat. This was documented in the hospital after I complained about the problem. You may have a similar type of problem. Again, the body's reaction to that type of thing is to freak out and an have the heart race out of control. Good luck! Kristen

Hi: I have been taking provigil for about a year. I definitely helps with fatigue. Over the last year I have had to bump up my dosage....I don't know if that means that my body is getting too used to it or if I'm just getting worse. I can especially vouch for it's effectiveness based on a couple of times when I have had pharmacy screw ups and couldn't take it for a day. I was an absolute mess!! I could barely function. My fatigue was immense and my brain fog was completely debilitating. I currently take provigil, cerefolin (for brain fog), MagOX 400 (for nervous system stimulation), and lexapro. The lexapro doesn't seem to do a thing. I feel the provigil is most beneficial for me. However, I am still symptomatic. Dr. Grubb feels that I am definitely getting worse. (I've had POTS all my life. I am 38.) BUT, the provigil definitely helps my symptoms and quality of life. Kristen

Hi: I've had POTS all my life. I am now 38. It's been quite a rollercoaster for me as I'm sure you can all understand. Over the past year or so my condition seems to be worsening. My doc is not sure why...perhaps pre-menopause? In any case, I am currently taking lexapro, provigil, MagOx 400, and cerefolin. I'm still pretty sick and symptomatic. I really feel that the lexapro isn't doing anything for me. I remember when I first started it over a year ago my doc asked if it was helping. My response was that I still had just as many symptoms as ever, but I didn't seem to "care" or worry about them as much...I felt more "blotto" and unemotional, but not without symptoms. I have now decided that I would like to try to go off of the lexapro. My brain continues to become more and more foggy and unfocused and I wonder if the lexapro contributes to that. (The cerefolin is supposed to help that) I want to see how much of it is the lexapro and how much is just me. Has anyone had any good or bad experience with the lexapro tapering process ? Thanks. Kristen