JacobyD

Welcome SusieQ! I'm an old veteran, but haven't posted much here lately because I have been treating some other health issues besides my autonomic problems. I know you will get some great advice and support here. I'm from Richmond, Virginia as well and would love to hear more about how you were diagnosed. I was diagnosed with POTS in 2001 at MCV, though I don't faint and most of my autonomic problems are secondary to another condition. Welcome and best of luck to you! Dan

Praying for you Morgan and Jake. Morgan, you are always in my thought. Dan

Hi Michelle. Yeah, that's my "sick" humor! I gave stand-up a try in Ft. Lauderdale when I was in college. Fun, but I liked being a computer geek better It's all yours to use as you please. I'm hanging in there. Day by day sometimes. Hope you (and everyone here) are doing well. Best, Dan

Keep pushing, Julie! I finally got mine after re-applying 3 or 4 times. I know you deserve it. You're still in my thoughts and prayers Julie. Best wishes with your continued fight, Dan

Thanks Gena. I grew up in Miami Beach and have to agree with your choice. Yikes! I wouldn't last 5 minutes!

HAH! Good one! I would have to say a guard at Buckingham Palace for sure!!! How about the top 10 reasons POTS sufferers don't date: #10. Your date might think they're too good looking if they show up and you faint after answering the door # 9. It's no fun having your blood pressure go down during your first goodnight kiss # 8. Your date thinks you always need to use the bathroom because you can't stop crossing your legs # 7. When you finally get the nerve to tell them you have POTS, your date says "Let's light one up and party!" # 6. Tired of having them cry because when you say "I need to sit down." they think you're gonna dump 'em # 5. Florinef is not Viagra # 4. Tired of telling them you have autonomic failure and they recommend a good transmission repair man # 3. Afraid there will be one to many "standing ovations" at the show you're supposed to go to # 2. Your heart races even if they're ugly # 1. You can't take being stood up

Hi Morgan. I can totally relate. I didn't get in to any of the autonomic studies either because I don't faint either and I never had much low blood pressure. I did go for a study on dysphagia (trouble swallowing) and it was wonderful. They finally validated me and confirmed I had some nerve damage and/or autonomic failure that was causing my problems. Phooey to all you psychologists and rookie neuros that told me it was "All in my head"! I am now about to go to Johns Hopkins to see if they can pinpoint the source of my problem and provide the proper treatment (besides just throwing pills at me that have made me sicker and I have built up a tolerance for)! Thinking of you Morgan. Hang in there! Your day will come, Dan

Hi Caitlin. I have been on and off a G/J tube for almost 4 years now. Things got real bad at one point and I was on a TPN line for a month, but my motility seems to have returned and I am only using a G tube now. My biggest problem is getting enough calories without taking in too much sugar. I also have trouble swallowing (though that is returning as well), which is the main reason I use the tube still. Overall I would say things have improved greatly for me over time. I hope things get better for you too. Best wishes, Dan

Hi Janet! I haven't been around much myself but think of you often. I've been pretty sick the last few weeks and am still tapering off some meds. So nice to hear good things from you. Take care, Dan

I am praying for him. Though he is always busy, he never failed to return my calls even if it was from his car on the way home late at night. I only visited him once, but he taught me so much and relieved a lot of the anxiety I was feeling about my condition. I still have about 90 minutes of digital video tape of his sessions from the 2002 NDRF conference in DC that I hope to make available once I am feeling better if anyone is interested (I'll post about it when I'm up to the chore!). I pray he is resting comfortably and gets some good news.

Welcome back Nina! Glad you had a good time. If anyone deserves it, you do. I love your pics and can't wait to take a nice trip like that myself someday soon. You're the best kiddo! Missed you, Dan

Hi Dr. Grubb! Hope you are doing well. I wish I could make more trips to Toledo to bug you (and break your Macintosh again with oddly-shaped CD-ROMs !). Get well soon. You are a gift to so many people. Best wishes, Dan Jacoby

Hi Nina. Whatever you do, please enjoy your trip to Mexico. I miss you Nina! You are always in my thoughts. Dan

Dear Morgan, I will say a prayer for you and Gene. Such sad news. I pray you will find peace during this very difficult time.

I'm thinking of you Julie. Still following your story with great interest. Sorry I haven't been around much as usual. I have been focusing on getting off of my meds which has been a problem. One of the main w/d symptoms is neck and shoulder pain, and since you and I had similar surgeries its hard for me to know what's really causing the pain. Like you, I guess all I can do is be patient. Sending lots of thoughts and prayers your way Julie. I know you will be fine. You are nothing less than a true fighter. All my best, Dan

Hi Emily. Amy is right, I did have a pretty bad experience with benzos but it has been said many times we all seem to react differently to different medications. Our condition is also very rare, and most people are prescribed benzos for anxiety or muscle spasms. Regardless, my personal experience has been a bad one. A lot of people say it is because I was on then for a long time or at higher than normal doses. The fact is that I was on a very low dose and went into tolerance withdrawal. The doctors did not recognize the fact that the benzos were making me feel worse and just kept upping my dose. I am currently tapering very slowly off of my benzos, as this is the best chance for a smooth landing as your brain needs to re-train itself to use GABA and calm your nervous system naturally. Best advice is to just keep a close watch on your intake and possibly only take them as needed. I don't want to frighten anyone from seeking medication that may make them functional. My benzos made me functional again, but when I became tolerant of them my symptoms were very similar to my worst autonomic symptoms and I did not realize that my nervous system was healing and the benzos were making me ill. Just try and keep your dose low and infrequent. I hope you can find some relief. Best, Dan

Hi Nina! Just wanted to let you know I am thinking of you and wishing you the best on your MRI this Friday. I am very curious to hear the results. I've had a lot of neck and shoulder pain myself over the last few months. This is also a fairly common symptom when tapering (or hitting tolerance) off a benzodiazepine due to muscle tightness. Hopefully it will pass. Julia and Diana, I think of you both every day and want you to know my thoughts are with you. I will never be able to thank you enough, Diana, for stopping by and visiting me at the hospital. I know I was in pretty rough shape at the time, but you brought a smile to my face that stuck with me for quite a while. Lots of love and good thoughts all around, Dan

Wow geneva. I would have lost it myself. I had a similar experience a couple of years ago. I got out of my car which I parked in a handicapped spot (HR was hitting 170+ at the time) and this "gentleman" yelled at me "You sure don't seem physically handicapped." Looking into this idiot's face it only took me a second to reply "That's funny. You sure seem mentally handicapped. How come there isn't a special parking space for you?" Momma always said "Stupid is as stupid does.". Sure wish people would find more important causes to pour their energy into. Best, Dan

Ditto! Zofran rocks for sure. I use the sublingual pills as needed. Works like a charm. Good luck!

Hi Nina I'm sure you remember I had quite a fight with gastroparesis a while back. The only thing that worked for me was liquid Domperidone, which I had to get from the local compounding pharmacy since it is still not available in the US (under the brand name Motilium) as far as I know. I never had any side effects from this med and it did work for me. I will still mention the usual disclaimer that we are all on different meds and all seem to react differently to them. You should at least mention this option to your doctor and tell him you know at least one person that it worked for! Thinking about you and hope things improve for you very soon. I'm glad you have a diagnosis that can be treated and will certainly resolve itself over time. Best, Dan

Hi Nina! Been thinking of you and following your story. Glad you made it through the test without discharging any firearms. Do you think your pelvic pain might be from the bone harvest Dr. Heffez did? Every once in a while I get some mild pain there if I sleep all night on my left side. Wishing you some good days in the near future. Best wishes, Dan

Hi Justin. Michelle and Nina are correct. If you need more info on benzodiazepines (Ativan, Valium, Klonopin), check out The Ashton Manual. When taken once or twice or for less than a week as prescribed by the AMA, you might not have any trouble. My problems began whenever I had new or increasing symptom. I would call one of my doctors, and their answer would be "Just add another mg of Ativan a day to your dose". Before I knew it I was going through what is called "tolerance withdrawal". The symptoms were so bad, that I was bedridden for a few months and thought I was having a major autonomic relapse. It wasn't until I found The Ashton Manual that I realized that my symptoms were caused by Ativan taken over a longer than recommended period of time. Mine is an extreme case, but this does not mean that you should use this drug regularly and/or for a prolonged period of time without accepting the possibility of a serious addiction and a difficult withdrawal experience. I am in the process of tapering off this "poison". The tapering itself will take several months. Healing (and the possible painful withdrawal effects) doesn't usually begin until you are a few weeks off of the drug, as your brain's GABA receptors need to re-train themselves how to function without the medication. This recovery period can be mild and short for a lucky few, but can often take from 18 months to 3 years before your GABA receptors completely repair themselves. This does not mean that everyone who takes benzos will go through this ****, just like it does not mean everyone who plays Russian roulette will blow their brains out. However, this medication is very dangerous and doctors seem to know less about its dangers than they do about Dysautonomia. I am not saying that there are not medications out there than can make you functional, but I would love to hear from anyone who has taken a therapeutic dose of a benzo for any extended period of time who was able to cold turkey off of them and not experience any negative effects. If you have any specific questions, feel free to email me at VaAspMan@Hotmail.com. Hope you find something that works for you and that you can begin feeling better. Dan

Miss you Nina and Teri! Thinking about you and hope you have a safe trip home. Lots of love, Dan

Hello all. Hope everyone continues to improve. I am fighting some other health battles that seem just as hard as all of my autonomic fun. Just wanted to let you know that one of my business partners (Lt. Commander Paul Galanti) will be on Larry King Live (CNN) this Saturday night at 9pm and midnight. His fighter jet was shot down over North Vietnam in 1966 and he spent nearly 7 years as a POW in the infamous Hanoi Hilton POW camp. He was brutally tortured repeatedly and spent 2 years in dark solitary confinement. He was able to somehow emerge as one of the most generous, loving, caring, and happiest people I have ever known. He will be on with a couple of other POWs and Ross Perot. I know it is the 4th of July weekend, but I'm sure these POW's stories will be an inspiration to all of you "fighting the fight and looking for hope". I hope you are all behaving yourselves! Love and healing, Dan

You people sure are kind! I have will certainly stop by and say hello and offer any help if I can. ethansmom, congrats on your move. I hope it goes smoothly for you. I think you will end up living pretty close to my folks, who now live in central Florida (I grew up in Miami Beach). Michelle, you know I can never thank you enough for all of your hard work in putting together such a great resource for sufferers of Dysautonomia. I don't think people realize that you have put the majority of this site together all by yourself (with the help of some wonderful volunteers) and that the only thing that has kept it running is your sweat, dedication, and all too often your own money. I would hate to see this community disappear, so even if you have to sell your toaster, please make an effort to support this site financially and send whatever donations you can to this great non-profit oasis. This site is not sponsored by any corporation, other medical organization, or grants. It is up to those of you who benefit from this great place to keep it alive. I would hate to check back in a month or so and find it gone forever. It is too precious a gift to all of us. Best of luck to all of you and especially those who have been such a big help to Michelle. Sorry to sound like a pitch man for public television! Like Ah-nold says "I'll be back!". Dan