JacobyD

You all are the best. I am so glad that I found this place, and will never be able to thank you enough for helping me through some tough times. I will pop in and make sure you are all behaving from time to time. I am always amazed that so many of you are so willing to dedicate so much time to helping each other out with such a confusing and ever-changing syndrome, and will pray for all of you whether you believe in prayer or not. I am tapering off a lot of meds right now, and am keeping my fingers crossed that my autonomic problems are not being 'masked' by all the fine medications my doctors so kindly dumped into my body for no particular reason other than to 'do something' for a condition they know nothing about. I hope you all see improvements in the coming months and years. Best wishes, Dan

I am so sorry, Nina. Such sad news to wake up to. I hope they can grieve and find comfort and peace over the coming weeks. My heart breaks for Kelly and her family. A very sad loss for them and you. You will all be in my thoughts today.

Just wanted to say thanks to everyone here who has helped me through the last couple of years. I still have many health problems, but for the most part none of them are 'autonomic' in nature. I will be concentrating on getting stronger and focusing on my remaining health problems, and will probably not be posting here very much if at all. I will continue to keep all of you in my prayers and hope you are lucky enough to meet and get support from some of the great people here like I have been blessed with. Love and healing, Dan My Online Journal

I will be sending whatever positive energy I have to Kelly and her family. Thanks for the update Nina. I hope you are feeling well also. You are a great friend to a lot of people. Dan

My thoughts are still with them. Thanks for the update, Nina.

Hi Michelle. Don't know what part of the country your friend lives in, but during the last 4 years (as you know) I have had my share of symptoms. Migrating joint pain is a common symptom among those with Lyme disease. Usually this is also accompanied by a fever, but not always. Also, it has been reported that ticks are especially active this season and that about half of all those who receive a tick bite resulting in Lyme never know they were bitten nor will many of them ever see the tell-tale 'bullseye' rash. Lyme is also no longer limited to the northeast, even though it is still more common there. Hope she has something else, but I am only posting what I know. I'm starting to feel like that isn't very much any more since I have heard so much! D

Nina- You know I will be praying and sending all the positive energy and hope I can to Stephanie. I will save a little and send it your way as well. Love ya, Dan

Nina you always amaze me! You deserve a full-time on-site cheering section. You are the biggest inspiration I know and what you thought was 'cheering' by me was just stunned amazement. You rock. I hope you take some well deserved time for yourself and enjoy your achievement. Love and healing, Dan

Hey lilbanana- What is your actual dx? Do you faint? Do you have low blood pressure? I was put on Florinef after my POTS dx and it made me feel much worse. I never fainted, and as it turns out even though I had severe tachycardia my BP actually rose when I stood up. Florinef only made my BP increase more and made me feel worse. As far as relaxing (without becoming addicted to tranquilizers), you could try some breathing techniques. Basically, just relax and take a very slow breath in through your nose using your abdominal muscles. Hold the breath for a couple of seconds and then release the air back out through your nose very slowly (about 4 seconds as well). You can also try simply sitting back and closing your eyes and concentrating on relaxing your muscles one at a time. Start by relaxing your fingers and hands, then your arms. Then mentally work your way across your body relaxing your toes, feet, legs, stomach, etc. This can take up to 20 minutes but once you finish and realize that all of your muscles are relaxed much of your tension and stress will disappear. Hope this helps. It works well for me sometimes, and sometimes just a little. Either way there is always some improvement. Hope you so well on your exams and can find some time for yourself to unwind. Best, Dan

Hi again. I had a sleep study performed quite a while ago and it was determined that I had 'very mild' sleep apnea. I am not too concerned, as I was on a high dose of meds a the time that seemed to be the cause and have recently begun tapering off. The most common treatment for sleep apnea - assuming that is your problem - is the use of a machine called a CPAP. It is basically a very small mask that you wear over your nose and/or mouth that gently forces air into your lungs to make sure you don't stop breathing during the night. I don't use one, but I had two sleep studies. One without a CPAP and one with. They prescribed one for me (Its in my closet), but I have not needed it. The most important thing you will learn from a sleep study is whether or not you actually have periods where you do stop breathing temporarily during the night. Many people have this condition and are not even aware of it, unless they wake up gasping for air like you did or just move around enough so that they start breathing again. As for the numbness, I used to get this and was told it was another symptom of Dysautonomia probably caused by decreased blood circulation. Fun, isn't it? Hope you feel better, Dan

Merrill- I am so sorry to hear you have had such a terrible experience. Have you had a sleep study to determine if you may suffer from sleep apnea? What kind of medications are you on? Some sleeping aids can really 'weaken' your respiratory system. I hope this is a one-time thing for you. Best, Dan

Hi Michelle. I have this problem every time a hot or cold front passes through. I don't think there is much you can do about it, since our 'automatic' ability to adjust to pressure changes has been compromised. I have asked a few of my favorite doctors about this, and they say there is no real way to deal with it. They say even 'normal' people experience subtle changes during barometric changes. Like everything else, we seem to be more sensitive to it. The best 'cure' would be to move to Arizona. Hmmmmmm....... Dan

Hi Shari. I signed up for a clinical study at the NIH - #87-CC-0160. http://clinicalstudies.info.nih.gov/detail...87-CC-0160.html The doctor (Dr. Barbara Sonies) is fantastic, though I know she will be out of the country until the end of the month. During the study, she performed a modified barium swallow. This entails swallowing different textures of food/drink while they video-x-ray your swallowing in real-time (fluoroscope). She also performed ultrasounds on my throat and under my chin, which demonstrated a mild tremor in my tongue. My swallowing problems are most likely due to my 2002 surgery on my cervical spine. Dr. Sonies believes the doctor 'knicked' the nerve and caused some temporary damage that should heal over time. She did ask if I had ever taken any radioactive iodine, so I am sure she would be interested in seeing you. Also, do NOT start taking tranquilizers - especially if they are in the benzodiazepine family (Valium/Ativan/Klonopin)! They are highly addictive and can actually cause your throat problems to be greatly magnified. Hope this helps. Tell Dr. Sonies I sent you - she is the best! Good luck and let me know what you find out, Dan

Hi Lisa. I have been having throat spasms and serious swallowing problems for more than three years. Over that time, I have seen almost 2 dozen doctors. Every single one of them told me "I see no cause for your throat problems. It's all in your head. Go see a psychologist". Eventually I did see I psychologist and after the first session he told me "Your doctors are crazy". Even he felt the source of my throat trouble was "organic" and not psychological. In January of this year, I made a short trip to see a neurologist who knew a bit about dysautonomia. When I arrived I told him I already knew the status of my dysautonomia but wanted to know if he could help diagnose my throat problems. He didn't spend 60 seconds focusing on my throat. He gave me the standard neuro tests and a tilt table test. After waiting almost all afternoon, he finally sat down and told me my autonomic nervous system was improving, but was not robust. He then had the nerve (no pun intended) to tell me that as for my throat problems "I was oversensitive to my body's normal functions". That was the straw that broke the camels' back. I lost it. I looked him in the eye and said "So if I were to wrap my hands around your throat and choke the life out of you the police report would read that you were 'oversensitive to my hands being wrapped around your neck'?". He got angry and started to say something but I put my hand up in his face and told him "Don't even waste your breath" and walked out. A couple of weeks later I took part in a clinical study at the National Institutes of Health and finally got confirmation that I do in fact have some nerve damage in my neck that is causing my throat and swallowing problems. Most doctors do not want to tell you they don't know what is causing your problems. Even fewer want your opinion on what you think is causing your problems. Keep looking. There actually are some health care providers out there that are concerned about your health and your care. Good luck! Dan

Hi Jessica. I was lucky enough to have a friend of the family that had his own camera store/photo lab and also worked for the Miami Herald. I went to work in his store after school when I was about 14, and learned everything on the job. It was the best way to learn because I was exposed (no pun intended) to all kinds of equipment and different styles of photography, so I wasn't limited by taking a photo course from a photographer that was biased towards a certain brand of camera, film, and/or style. I eventually learned how to process film and started spending more time taking pictures. At first, I went to the football and baseball games just because it was great to watch the game from the sidelines. I have a picture of O.J. Simpson holding me in a headlock that was taken back in the days when the Pro Bowl was sometimes held at the Orange Bowl in Miami. Creepy. I will have to find that one and scan and post it! I still do photo work when I am able for my interactive software projects. I do a lot of QuickTime VR/iPIX type panoramic stuff and digital video for CD-ROMs and web sites, but it isn't the same. You might want to start by searching for some good books on beginning photography. There might even be some decent web sites out there. You can always take a class at a local community center or college. Once you learn the basics, you will soon develop your own style. I'm really thrilled for you and hope you are able to make something happen with it! Best, Dan

Congratulations Jessica! I read about accomplishments like this on these forums and I just don't know where you find the strength and determination to achieve these things. I do think that photography is a great field to be in. Before I got into interactive media, I was a professional photographer for years. I worked as a sports photographer for the Miami Dolphins, The University of Miami Hurricanes, the Texas Rangers, and the unlimited hydroplane boat racing series. I also covered the Miami riots over 20 years ago and had one photograph of a lighthouse on Key Biscayne published in the National Geographic magazine. I preferred the sports work! I worked from home then, even though I was in my late teens and very healthy. it might be a great choice for you. I still have all my original Nikon camera gear, though I no longer use darkroom equipment. I have everything put on hi-res Photo-CD. Sorry to get off on a long photography ramble, but it is a great profession and fantastic hobby. Again, congrats on your degree! Best, Dan

I have had a long history of GI motility problems from Dysautonomia and some over-medication problems that I am currently addressing. The only thing that ever worked for me was Domperidone. It is not available at your regular pharmacy, you will have to have it made at a compounding pharmacy. I usually get the liquid form and it has worked well for me (though you should talk to your GI doc about it as we all react differently to medications). It works by stimulating the muscles that empty your stomach. It is due on the regular U.S. market under the brand name Motilium sometime soon. Hope you find some relief and feel better soon. Best, Dan PS: I am also on Synthroid (137 mcg) as I had thyroid cancer and a complete thyroidectomy back in 1996. My doses have ranged from 125 mcg to 175 mcg. Sometimes I wonder if my higher doses didn't help contribute to my 'day of sudden onset', but will never know for sure.

i founded and co-own a small interactive media agency (http://Eye-Q.com). i work when i can, though i am having a lot of trouble lately as i am tapering off a high dose of ativan. stay away from that stuff if you can! poison! one of my business partners was a pow in the hanoi hilton for almost 7 years and has been an amazing source of courage for me. its hard to complain about being housebound when i listen to some of his horrific stories. there is always someone out there worse off than you are!

Thanks Julie. I miss talking to you about our Heffez experiences! I am also hoping that there was no cranial nerve damage done during that procedure. I have had a rough last couple of days but am looking forward to going to NIH. I was just chatting with my sister and she has invited me to spend some time with her family in the Florida Keys . If I can get any relief at all I am going to head down there for a while. Maybe the salt air, visiting some old friends, and a bit of sailing will do me some good! I can only hope... Dan

Thanks Jackie. I am already tapering off Ativan (by crossing over to Diazepam first). It will not be easy, but I have dealt with worse things in my life. The doctor I am seeing at NIH next Tuesday wrote a book on Dysphagia including an entire chapter (which she sent me) dedicated to medications that can cause swallowing and throat problems. Benzos like Ativan were at the top of the list. My only concern is that I had mild swallowing/choking problems before I started the Ativan. I can only hope those problems were ANS-related, as my autonomic nervous system has improved a great deal over the last few months. I am spending most of my forum time at a Benzo withdrawal support site these days, but will post what I can about my NIH experience and whenever I feel I might have something positive to offer. I am very tired of living with the fear of choking to death, and every day things seem to get worse. I am looking for some good news sometime soon! Thanks for thinking of me . Dan

Great Cathy! I look forward to hearing about your progress. Best of luck, Dan

Oh yeah, I can talk about swallowing problems. They have plagued me constantly during my stint with Dysautonomia. I have had a feeding tube installed twice, and was even on a PICC line (intravenous feeding) for a month last year. My swallowing problems were actually my first symptom to appear. When things became unbearable during the summer of 2001, my doctor prescribed Ativan. This worked great for a few months, but before I knew what hit me I built up a tolerance and was addicted. Not a good combination. I 'crashed' in January of 2001, and was diagnosed with Dysautonomia shortly after that. Since then, none of my doctors have had any explanation for my swallowing difficulties. Over the last few months my autonomic problems have improved a great deal, but the swallowing (and choking) problem remains. The problem is worse when I don't sleep well, try to exercise too much, or just plain overdo it. Here's the good news. There is a Clinical Study at the National Institutes of Health. You can click here to read more about it. I am scheduled for preliminary diagnostic tests this coming Tuesday March 2nd. The outcome of these tests will determine if I will participate in further Studies and/or if I am eligible for one of their Clinical Trials which would involve some sort of groundbreaking new treatment. The bottom line is if your swallowing is so difficult that you are losing weight, you need to see a GI doc. If you are choking, you should see an ENT, but keep in mind that an ENT only knows so much about the complex process of swallowing. They usually right it off to acid reflux and hand you a prescription for Nexium (as they sip coffee from their stainless steel Nexium coffee cup ). If things get unbearable, I would look into the Dysphagia study at NIH for sure. After rambling on forever, you can find some comfort in knowing that of all the people I have seen that have encountered swallowing problems on these boards, I am the only one who has had it chronically. Most everyone else has reported that the problem goes away after a short time. I hope you are one of those people! Let me know if you have any questions, and I hope you feel better soon. Best, Dan

Thanks for the support! I will be tested on Tuesday, March 2nd and will spend the night with relatives in the DC area and return home on Wednesday. Keep your fingers crossed!

Just an update for those of you who know how much trouble I have been having with my throat and swallowing. I was just accepted into a Clinical Study at NIH specifically for diagnosing Dysphagia (Protocol # 87-CC-0160). I will be spending about 6 hours at the hospital while doctors who specialize in swallowing disorders (not just regular ENTs) perform several tests to try and determine the source of my throat 'episodes' which prevent me from swallowing, talking, eating, and which often lead to choking. I have been fighting this symptom for a very long time and feel this is my best chance at getting a diagnosis and possibly finding some relief as there are also Clinical Trials at NIH that include new technologies for aiding people with swallowing difficulties. I know its not the OI study, but I thought I would post here as I have received so much support in the past when dealing with all of my autonomic related symptoms. I will post the results when I return next Wednesday!

Michelle- Thanks! Nina- You are scaring me again! I REALLY hope you can get control of your GI problems. They can be the WORST!!! You know I am thinking about you, with all the brains in my bag! I've got my toad on a Harley to remind me of you as well. Feel better! Louby- Thank you so much for your thoughts. I think everyone here deserves a Guinea Pig award! When was the last time your doctor tried something on you and said "I'm SURE this will solve your problem" before proceeding? As for ToadGames.com, I built this website with a friend since I became homebound. It's a totally free site. Even the 'sponsors' don't pay for their ad banners. We have thousands of members and average 22,000 games played per day with millions of visitors each month. SO hopefully we can keep it growing and turn it into some $$$ someday and help out DINET! Who knows... I wish everyone improved health! -Dan