JacobyD

Hi Michelle. I've had several endoscopies and will continue to have one at least once a year for now. I've had some with no anesthesia (not fun), some with "laughing gas" (still not fun), and a couple where I was completely under. If you are going to be put under, you may want to request they use Propofil. It's very short acting, and I bounced back from it right away. No after effects or interaction with my other meds. The good news is its a pretty short procedure, even when I had my feeding tubes installed. Good luck! Dan

I'm with Ernie. I'm still housebound and whenever I have a hospital stay (lost count) it takes days to recover - even if its an outpatient procedure. Please taper off that Ativan very slowly. The larger the cuts you make, the greater the shock to your system. Feel better soon.

Hi Linda. Yes, this is a very touchy subject - but one you should have all the information you could possibly gather at your disposal to determine if your problems are medication-related. This is a long-winded post, but my health problems ending up being centered around Ativan. Since choosing to slowly taper off this medication, I am feeling 110% better and know that my original autonomic problems have faded and were replaced by the adverse effects of the long-term use of Ativan. My problems began with extreme tachycardia, orthostatic intolerance, slow gut motility, and dysphagia (swallowing problems). When I began having serious throat spasms, I was prescribed Ativan. I never abused it or took more than I was prescribed. I most certainly never experienced a "high" from Ativan, nor was I looking for one. Ativan is a very short-acting drug. Unlike Valium (which has a half-life of about 30-200 hours), Ativan has a half life of about 8-24 hours. This can often lead to a phenomenon known as "interdose withdrawals". The word "addiction" can also be extremely misleading. This class of medications (benzodiazepines) works by "blocking" nerve receptors that accept "stimulation". As the medication wears off, the rebound effect can actually cause intense anxiety or even magnify the reason it was prescribed for in the first place. This type of withdrawal can occur in as little as 14 days. I was prescribed Ativan for muscle spasms in my throat. It worked great for a few weeks, but unlike a "constant" medication like insulin (not something you can become "addicted" to or whose effect wears off, but more like something your body needs like food, water, and oxygen!), your brain will try harder and harder to overcome a benzodiazepine's "blocking" effect. This means you either need to take more of the medication, or stop using it all together and let your brain re-train itself to function normally. True, some people don't ever develop this problem, or don't realize they have a problem because they write off any current symptoms as being a part of their original diagnosis. The FDA recommends that benzodiazepines not be prescribed for more than a 2-3 week period. I wish I had this information when my doctor gave them to me without any indication that there is a very high likelihood problems with long-term use. I drank like a fish in college. I stopped the day I graduated. No problems. I smoked occasionally in my early 20s. I stopped cold turkey without a single tremor or urge for another. I don't have a single alcoholic, drug addict, or smoker on either side of my family. Its not the chemistry of the body that puts you at a greater risk of problems with these medications, but the chemistry of the medications. I have always taken less medication than I was ever prescribed. I even stopped taking my beta blocker cold turkey after 2 years (more bad advice from a doctor) without any effect. My case has been followed closely by one of the best neurologists at Johns Hopkins. After repeated tests and a review of my case history, it has become very clear that the majority of my symptoms for almost 4 out of the last 5 years of my illness were actually being caused by my medications and not my original dysautonomia, which even according to Dr. Grubb was most likely of viral origin. To feel shame or be looked upon as a "drug addict" because of what this medication has done to me is as ignorant as any of our friends, relatives, doctors, or loved ones telling us our POTS or dysautonomia problems are "all in our heads" and we should just "toughen up and move on with our lives". I made the decision to cross over from Ativan to Valium and slowly taper off the medication. The withdrawal process is slow and I have had some rough times as my benzo-receptors fight to re-train themselves. The tolerance and withdrawal symptoms so closely resemble autonomic failure in that there can be many unexpected episodes of adrenaline rushes, anxiety, severe problems with gut motility, blood pressure fluctuations, and all sorts of other "fight or flight" malfunctions. Does this mean this medication doesn't work for some people? No. I am totally convinced it should be used in moderation. If you feel like you're developing new symptoms as a result of being on Ativan for more than two weeks, most likely you should consider an alternative that is designed for long-term use. There as absolutely nothing wrong with taking Ativan, Valium, Xanax, or Klonopin every so often if you're having trouble sleeping, need to chill for an MRI, or have occasional panic attacks. Is it the "insulin" of autonomic medications? Not a chance. One thing I have learned is that most doctors don?t like complicated cases or conditions they can't diagnose. Throwing a med like Ativan or Valium at us is an easy "out" for them. Nothing like a tranquilizer to keep you from buggin' em! I'm not debating whether some people who use this class of drug long term don't have any problems or not. I'm just trying to share my experience, which is just as real as those who defend its daily long-term use. I've met many people who have come out of their illness after discontinuing long-term benzo use, but have yet to come across anyone who has said "I've been talking Ativan for 10 years and I just keep getting healthier and healthier!". There is only one long-term clinical study on the effects, use, and withdrawal of benzodiazepines that wasn't performed by the pharm companies themselves. More information on this study, along with some great news articles and other information can be found at www.Benzo.org.uk. Bottom line... find something that really does make you healthy, functional, and happy. If that means popping a benzodiazepine, more power to ya! Maybe simply taking a dose when you feel your POTS symptoms are really hitting hard might be a good idea? It has already been said here that if the drug is helping you, take it. If you think its making things worse, better stop taking it sooner rather than later. Above everything else, I hope you find something that makes you feel great. Feel better soon, Linda. Cheers.

Hi Melissa. I'm sorry to hear of your GI problems. I had very slow gut motility at one point and was put on TPN. It is vital that you keep the line sterile. This is something that most hospital staff members don't realize. I had mine for a couple of months with no problems, but during a stay at University of Texas Southwestern Medical Center for autonimic testing one staff member treated my line like a V-8 dipstick and got it infected. I had a temp of 105 and it broke just as they were about to put me in a tub of ice. I'm still on a PEG feeding tube, and you did the right thing by giving your stomach a rest. After mine was removed I started feeding directly into my stomach. Other than not being able to tolerate sugar I haven't needed to go back. If I lose another pound or two it may just happen though, LOL! best of luck and feel better soon!

I have trouble just being a passenger these days. I used to race semi-pro, and driving was my joy. My driver's license expired last summer. Hoping as things improve I will be back on the road soon. Sold my cars. Not fun, but I'm still trying to grin.

Lots of prayers coming your way, Jan. I have Barrett's Esophagus and have my throat monitored very closely now. Please keep the faith. You and your husband have been in my thoughts and prayers for a long time now. Dan

Corey, I posted on your other thread.

Hi Corey. I live near Richmond (Midlothian, near James River High School). I don't have classic POTS, but have autonomic problems. I don't have a speaking voice and am homebound for now, though I am very interested in sharing your medical story. Maybe we can help each other out. I've glot plenty of local doctor horror stories, as most of us do. I hope you're all feeling better.

Nicole- I was also put on a very high dose of benzos almost 5 years ago. At one point I was taking upwards of 10-12 mgs of Ativan (Lorazepam) per day. That's about a 100-120 mg Valium equivalent. The Xanax equivalent you mention is also an extremely high dose. When taken "as needed", or for a short period of time, there is usually never a problem with this class of meds. When taken for extended periods of time, it is more likely than not that you will run into tolerance problems (meaning the dose you are on no longer has the same effect). This "tolerance" can also bring on symptoms that effect every aspect of your nervous system - including autonomic problems. Some people seem to "function" fine taking small doses for years, but if they still have autonomic problems they may never know if they're caused by the benzos or their original trigger. It can be a "catch 22". I crossed over from 10 mgs of Ativan to 60 mgs of Valium (Diazepam) and started tapering from there. I am now on 14.75 mgs of Valium and find the symptoms I originally had have all but disappeared. All I have now are withdrawal symptoms from the benzos, but I am feeling better and better as my dose slowly decreases. You should visit www.benzo.org.uk for more information, print out the equivalence and tapering information, and discuss it with your doctor. I hope you feel better very soon. Dan

Hiya Morgan! Your hubby's a lucky man. I miss the racing business more than anything! The Grand Am Rolex cars will be coming to Virginia International Raceway in April. That's me racing there in my avatar (first race I ever won!). Can't wait to see more pix and get the game when it comes out. Been reading up on it on the web, but most of the sites are in German... where Grand Am racing is as popular as NASCAR! Dan Me and Ricky Rudd before everything turned to doo doo

Hi again. Yes, he is. A very good one. Here's his info: http://www.neuro.jhmi.edu/profiles/rumbaugh.htm Dr. Ben Carson is in his group - one of the world's best. Too bad they couldn't help me though! Jope you're doing great. Dan

Hi futurehope. Sounds like you're getting some decent treatment. I see Dr. Rumbaugh at Hopkins. While they still haven't found the "cause" of my problems, he was the first doc (besides Grubb!) to spend time THINKING about my condition and considering real treatment to help improve the quality of my life. I hope you get some answers, see improvement, and are able to make that trip!

I don't have many "good" days. I'm mostly bedbound. I can never tell just how bad things will be by how I feel in the morning. Sometimes I'll wake feeling optimistic and get slammed by 9 am. Other times I wake feeling like death, but things slowly improve during the day. Sometimes I just feel rotten for days in a row and don't sleep at all. I have burning around my mouth, but I think its from some meds I've built up a tolerance to and am discontinuing. Yours may be related to medications, too. Hope you're feeling better soon. Happy ****** New Year!

Kim, futurehope has a point. Benzodiazepines (Xanax, Ativan, Valium) can often have a paradoxical effect or rebound effect as they wear off or between doses. Many people who take them regularly don't even realize that many of the symptoms designed to be controlled by these meds (anxiety, anger, muscle spasms, etc...) can often be caused by them, especially over time. This isn't the case for everyone, but for very many. All meds can do crazy things to different people. Ativan has caused me many problems after working well for several months, even though I have no history of "addiction problems" on either side of my family. Just a thought. We're all different. Xanax has worked wonders for many. Good luck!

Radha- I hope someone can answer this. I've had the same thing on the right side of my neck for a long time now. Doctors have been no help, and when it hurts my other symptoms often kick in soon afterwards. I would like to rule out Carotid Artery Stenosis, but don't think that's it or I probably would have had more problems develop by now. I tend to believe mine is neurological. Hope you (we) get some answers. My pain was there just before all my other autonomic problems started. Dan

Bring it on! Lemme know if ya need my email address. Been having a rough time. I miss you too, kiddo. Give my best to Teri. Still love our photo with Janet from the 2002 conference in DC. Dan

Nina, Im so proud of you, but you already knew that. I think of you often and always follow your progress even though I've been very quiet for so long. This story is amazing. You rock, mouse! Love, Dan

Got mine! Will be handing them out to all my docs. Thanks Michelle and everyone involved!

Looks OK to me, Ernie! Hi Michelle and Morgan!

Hi all! I hope this post finds everyone doing as well as possible. I haven't posted in a very long time, but have been following everyone's progress whenever I can. There are so many posts referring to "symptoms" that could have so many causes, be it our diagnosis, the medications we take, or any combination of these. I quite often read posts that start out "I recently started feeling symptom X. Does anyone else get this and if so, what can I do about it?". Usually the first reply is something like "Hi. I have heard of this. What is your current diagnosis? Are you taking medication X?". I thought it might be a good idea to use our signature lines to briefly describe our condition and list the medication(s) we are taking. It might help people recognize a symptom and relate their own experience. For example, some of us get very agitated from medications like SSRIs. Just a thought. I would like to start contributing again and its difficult to keep up with everyone's diagnosis and current medications. You can edit your "signature line" by selecting "My Controls", then "Personal Profile", then "Edit Signature". I just updated mine as shown below. Best, Dan

There are voluntary and involuntary aspects to the entire swallowing process. Any autonomic disturbance can certainly cause problems. Certain medications can also contribute. I've had terrible swallowing and gut motility problems and have been on and off a feeding tube. I'm tapering off some medications now that aren't helping, and while I still cannot eat solid foods I can swallow liquids most of the time, though it is still very labored.

Sending prayers your way Stacey. My mother's husband is also in a hospital in Orlando and is finally doing better. I hope good things come your way. Dan

I know I haven't been around much, but I've never stopped sending good thoughts your way. Even a superhero needs a break sometimes. Be good to yourself Nina. Love ya, Dan

My heart goes out to you dear morgan. What happened to you certainly is not uncommon. In the last couple of years I was handed an EKG that reported I had a heart attack. Turns out the EKG they put in my file belonged to a "74 year old African-American female". I also had a neuro test that was misread and I was told I had a major brainstem lesion that would mean I would eventually wind up blind and on a respirator. I had to have the test repeated and it was one of those fun "shock" tests. Give 'em **** kiddo! We love ya and just want you to feel better. Dan

Hi Susie. Driving was my passion before I became ill. I don't faint, but driving does make me very symptomatic. For me it causes problems with my neck and shoulders, which can be pretty painful. My heart rate also increases quite a bit, though my blood pressure is stable. I bought a new car in May of 2002 and it only has 2,000 miles on it. That's how little I've been driving. I have no problem being a passenger. I know there are many here who have problems driving, though they seem to get enough of a warning before syncope. Still sounds dangerous to me, so use good judgement and be safe! Good luck, Dan