MightyMouse

Tim, I used to get twitches and jerks all the time until I had my spinal surgery. I think mine were not ANS related, but rather, were due to nerve compression. Nina

If you're in Northern NJ, it's only about an hour and a half. I'm in far southern NJ, just outside of Philly and it's less than 3 hours for me. nina

Nice to have another resource to refer to. Greenwich is about 2.5 hours from my home, and only about a half hour from my mom's & both my sister's homes in CT. Thanks for sharing the info. Nina

I think that there are a sizeable group of people with dysautonomia who have problems with local anesthetic. Like you, it wears off quickly for me. As for being more lightheaded, yes, that could be from the epi... BUT...keep in mind, even minor procedures can produce intense emotions, which can cause as much if not more dizziness. I'm PETRIFIED of dental procedures and have a bad habit of tensing up and/or holding my breath. NOT helpful to me, as it makes me even dizzier than I otherwise would be. I've learned to not cross my arms and to keep my hands open, not clenched. The worst part is my fear of getting injections in my mouth--I had a few as a child that were excruciating. I try to think relaxing thougths. I've even run buddhist meditations through my head in order to get through the shots. Some people are genuinely oversensitive to epinephrine and getting it in a local might provoke a tachy episode. For me, that's never happened. Rather, I've just been a bit more symptomatic for a few hours or days depending on what I had done. Also, the post operative painkillers caused me more problems than any other single thing--make me groggy and off-kilter for days after stopping them. I guess the bottom line is to be careful not to assume a causal relationship between local anesthetic and feeling symptomatic--it's more complex than that. Again, the epi is in there to slow bleeding. However, it may not be needed as much in the ankle area--it's not as densely vascular as the mouth. Just ask your doctor. Nina

I've had both done. I didn't have any adverse reactions to the drugs--the worst part, as most folks with or without ANS problems will tell you, is the preparation for the colonoscopy. You have to have clear liquids and use loads of laxatives--despite all the fluids, I got dehydrated and my ANS issues flared up for several days afterward. I would suggest having the procedures done if you haven't ruled out things like ulcers, or other serious GI problems. My best suggestion is to have the procedures done at a hospital, with a real anesthesiologist who can be made aware to treat you as they would any cardiac patient. Many doctors now do endoscopies and colonoscopies in their office--but my doc doesn't feel comfortable doing that with ME, even though that's his routine for most patients. I was going to ask to have the stuff done at the hospital, but he suggested it first. Nina

Hi Vickie, good to have you here! The more the merrier--well, I dont' mean more people should have ANS problems , but you know what I mean...the more to share their strengths and to help when things get tough. Nina

Hey there--don't have any clue about how to answer your question, but just wanted to say that I hope you find some relief. Let us know what you choose to do and how it works out. Nina

I've had local anesthetic WITH epinephrine many times, and have had no diffiulty with it. One of the reasons that epi is mixed with the other drugs is to help limit bleeding at the surgical site. Nina

From everything I've read in my Ed.Psych Ph.D. program, any activities that keep your brain active, solving problems, etc. will help with memory. I think I've also read somewhere that regular exercise also helps with memory. Things that I can think of that might keep your brain active: crosswords, word puzzles, reading, playing a musical instrument. Here's a decent article: http://www.fcs.okstate.edu/aging/topics/Al...n%204.10.02.doc

Here's a link that's been shared before--you can buy support hose that don't look like old-lady ugly socks here: http://ameswalker.com/amwalsigcol.html If those are too expensive, I've done pretty well with some of the ones you can find at the grocery--not quite as useful as the real deal, but better than going without. Nina

I've flown to Europe. Here's what I did: I talked to my doctor ahead of time, and she gave me ambien, a sleeping pill, so that I could use to help sleep at the right times, including on the plane. I also used Enada (aka Nada) in the mornings to help me be more alert. I drank lots of water and ate enough salty snacks to keep my hydrated. Stayed away from alcohol and caffiene, which are dehydrating. Also, once you get there, try to spend sometime out in the sunshine for at least a bit each day to help re-regulate your body clock. Coming home was harder for me than going there and took me longer to recover from. Nina

Oh, as far as low carb and no animal products, you would have to rely on other protien sources for your primary intake, such as nuts and legumes. If you're not fully vegan, you can also have things like dairy and eggs, which are low carb and high protein. Nina

My immune system has been very overactive for at least 10 years now. Prior, it was the opposite. The doc who originally dx'd my POTS had me taking a whole bunch of dietary supplements to help with fighting infection: CoQ10, Magnesium & B6, and a bunch of other things. This was when I was before she concluded I had POTS and not just chronic fatigue. Nina

that's correct--you not all types of EDS are able to be tested gentically. Currently, EDS III is diagnosed via the Beighton Scale, which gives a rating based on how mobile certain joints are. You may want to peruse the EDS links that Michelle has under the "causes" section of the main DINET site. I've cut and pasted a bunch of them below: http://www.nlm.nih.gov/medlineplus/ency/ar...icle/001468.htm http://author.emedicine.com/ped/topic654.htm http://www.ednf.org/ http://www.dinet.org/links.htm#Ehlers-Danlos Nina , who also has EDSIII

Hi Carmen, I just posted a bunch of links geared toward newer members or newly diagnosed folks. You may want to check them out to see if they seem to match what you're going through. Here's theh post: http://dinet.ipbhost.com/index.php?showtopic=220 Welcome to our board and I hope you find information that leads to you feeling better. Nina

Welcome to our little corner of the internet! Bummer of a birthday present though On a good note, there's lots of good information out there for you. Sift through the main DINET site. These links have some of the info you've said you're looking for: Symptoms: http://www.dinet.org/symptoms.htm mechanisms-how the symptoms are believed to occur: http://www.dinet.org/what_are_the_mechanis...sms_of_POTS.htm things that are believed to cause autonomic problems: http://www.dinet.org/what_causes_pots.htm and most importantly, what kinds of things can help: http://www.dinet.org/what_helps.htm when reading about what treatments are out there, you must understand that many of us have unique combinations of treatments to get the optimal effect. Other places to get good quality info: Free PDF download of the Dysautonmia Handbook http://www.ndrf.org/NDRFHandbook.htm Please feel free to email me if you want more! I've collected quite a number of links over the years Nina

Debbie and Susie, we're so glad to have you here. I wish that when I was growing up, there was something like DYNA for me!! I just posted elsewhere on the board that I've had POTS/NMH all my life--and started fainting at age 10. I didn't get diagnosed until I was 31!!!! What a blessing for all your members to have such a resource. As an adult with dysautonomia, I'd like to share with you my thoughts on having this all my life. This may sound strange, but I think I've had it easier that most because I never was "normal." Since this is the way my body worked from the beginning, I've got nothing to miss--for me this IS my NORMAL. I was an older teen by the time I realized that other people didn't feel like me inside when they did things like go outside in the summer, or when they exercise, or when they get out of bed in the morning. I sometimes feel really badly for those who've suddenly developed dysautonomia--they've had a good taste of how it feels to have a body working correctly, and then lose that and have lots of limits that weren't there before. I'm sure this makes them very sad, angry, and maybe even leaves them feeling a bit helpless because they have no control. This is where I feel most lucky; I don't really get sad about my illness. I think that your info page on "what is dysautonmia" and why most folks don't know what it is or what it looks like will be so very valuable. It will really help the people who live, work, go to school or take care of (like doctors and nurses) people with autonomic problems to understand. That goes for kids with dysautonomia and grown ups too!! Again, so glad to have you here Nina

I've had POTS & NMH (aka NCS) since birth...so that makes 39 years and counting. I've always been heat intolerant. My first faint happened at age 10. The cause is not completely clear, but is believe, in my case, to be related to having Ehlers-Danlos III. Not sure if that completely explains things, because Michelle also has EDSIII and didn't have onset until her 20's. Nina

A nonprofit I used to work for did this for parents of children with autism. We had an advocay training program and would offer mentoring services to those who needed help with either the medical or educational system. All the mentors were parent volunteers. Worked great--they still have it operating today...like 10 years later? Cool, huh? Nina

There are several tests -- you need to be more specific. There is GI motility as mentioned about, then there are allergy tests, and then there are "food challenges" which is used to find "sensitivities", not allergies. There are others, but these were the first that came to mind when reading your post. Can't speak to the sweat test. Never had it done. Nina

Dan, I think it only slows motility temporarily--but you should check. I'm allowed to take the drug every four hours, hence, my guess that it's not long acting. You and I share the gastroparesis issue, but yours has been way more severe than mine. Nina

Dan, at some point, perhaps the throat spasms will resolve as well? (hey, a girl can hope! ) Glad that you passed the tilt, now lets hope for the rest! And until then, are there any effective anti spasmodics that help? Have you tried hyoscyamine (levsin), which I take for GI spasms? Isn't the throat controlled by smooth muscle too, just like the rest of the GI tract? Perhaps that might help you??? Nina

I never had a pre-pots life--I was born with it, so my report of my side effects is w/ full blown POTS. I do have to say, that within about 5 minutes of ingesting my first tablet, I needed to lie down for several hours. Be prepared for that. Nina

I've had all of the possible forms of imitrex: nasal spray, pills and injection. Here's what happens for me: It DOES work, but only after about a half our of feeling as though I'm going to die: chest heaviness, then all over body heaviness, like gravity has doubled and I just can't muster the effort to lift my hand. Also, I get nauseated, and feel warm for the period just before the headache stops. After that passes, I do get relief. We both get migraines here at home, and both of us have the same side effects. We have an inside joke about it: Imitrex really doesn't take away the migraine, it only changes your perspective on life such that after taking the drug you're just glad your not DEAD so you don't notice the headache as much In the same group of drugs, I've taken Amerge. Much less side effect with that one. Only a few minutes of discomfort. If you haven't tried Migranal nasal form of DHE, it's the one thing that gave me relief during a 3 month long migraine--and almost NO side effects, just a little lightheaded for a few minutes, and then relief. Hope you find something that works well for you. Nina

Just a couple of things on this topic...(can you tell I'm procrastinating with my homework??) A physician is nothing but a consoler of the mind. [Lat., Medicus nihil aliud est quam animi consolatio.] -- Petronius (Petronius Arbiter) Source: Satyricon The art of medicine consists of amusing the patient while nature cures the disease. --Voltaire Nina