MightyMouse

You could probably sew your own vest and then buy the inserts; maybe even use inserts that are not intended for cooling vests, but are gel packs you find at the pharmacy and/or camping supply

They mentioned during the segment that those who have type I diabetes are, for some reason, much more likely to develop the syndrome. Interesting. Perhaps you can watch it online either via the website http://health.discovery.com/tv/mystery-diagnosis/ or Hulu. Nina

Mystery Diagnosis had Stiff Person/Stiff Man Syndrome on their show this week. Nina

All birth control pills come with inherent risk of blood clots; in fact, if you have a history of blood clots, many US doctors will refuse to prescribe birth control.

I hear ya. This is the hottest summer on record where I live, just outside of Phila, in NJ. And, feeling awful after heat exposure is pretty normal for those with autonomic problems. It's been an awful time for me--3 weeks without AC took it's toll on me, and I have had the AC back for 3.5 days and I'm still needing a ton of sleep, struggling with being nauseated, etc. I love the cold weather! Nina

Wow... glad you made it to Mayo, and even more glad that you had treatment that got you feeling a bit better. Now, let's hope they get stable for the long term. Sorry your immune system is being such a beast I just posted a quote on my facebook page this morning that I think is appropriate to share with you today. ‎"I cannot make the universe obey me. I cannot make other people conform to my own whims and fancies. I cannot make even my own body obey me." ~Thomas Merton

Okay, it took me a gosh darned while, but I finally found the alternate recipe for the pancakes that used ricotta; this is the link, which suggest yogurt but I blend some ricotta instead, then use it. http://www.the-gluten-free-chef.com/almond...r-pancakes.html you can get blanched almond flour and many of the big groceries like Wegmans, Whole Foods, Trader Joes, or make your own by using a mill or grinder and blanched almonds.

CL, I would take that last paragraph you wrote and paraphrase it: "I'm overweight (working on it) and I really want to emphasize to my PCP I'm not lazy. Any tips on approaching this with him when I get a job (or close to getting a job - I know it takes a bit to get the placard)? I assume I could have him call my prior doctor in the other state to verify it is crucial in helping me work. Even if I don't have to always use it, it's there if I need it. POTS isn't predictable." Your last sentence is the key. Your illness isn't predictable, and when your symptoms are high and the weather is warm, it's a recipe for disaster if you're far from the office when you park your car. Nina

No, your response will be different at different times of day because the hormones in your body that keep bp low are at their peak in the morning and then lessen across the day. Check out information on cortisol, as well as catecholamines--you can find all of this on the main DINET/POTSplace website. This is why mornings tend to be so hard for so many of us. Nina

I eat bread, pizza and pancakes that I make using recipes I've found online; all of them are very low carb, high protein and fiber, and completely gluten free. This morning I had my homemade toast with sugar free apricot preserves. Last night I had pancakes and sugar free syrup. If you choose to try this method, you can look at the website called "chow", and look up recipes from Elena's Pantry; I've found her stuff to be really tasty. Also, there is a modified pancake recipe of hers I found elsewhere, but cannot locate the original link-- it has about a 1/4 cup of ricotta cheese added, along with using seltzer to make the pancakes fluffier--it's the version I use when I make them. I usually make a double batch, and wrap up extras each in single servings so I can reheat quickly in the morning. Nina

It may not be blood sugar at all... post prandial hypotension can cause all those symptoms--and it is set off by eating, when the stomach starts to utilize more blood flow in order to start digestion; this can pull blood volume away from your general flow, causing a quick drop in BP that can make you feel awful. http://www.merck.com/mmhe/sec03/ch023/ch023d.html small, low carb meals may help. I have personally found that I have much more energy since dropping many carbs out of my diet and eating mostly protein rich meals, with fiber and a small amt of carbs.

Hello Lina, and yes, I do remember you. I'm so glad to hear that you've made some improvements over the years. That's awesome. I hope your journey continues to lead you to better health. Nina

I would just like to add my own cautionary tale. I have really bad cervical stenosis. I've also had surgical repair--and because we didn't know that I also have a collagen defect, I had a terrible outcome of my first surgery at c5-6--the graft never mended with the surrounding bone, and actually collapsed. I had a 2nd surgery seven months after the first one, this time taking the graft out of my hip. I was out of work well over a year. And, most importantly for you to note: fixing the spinal stenosis issued did not change anything for my POTS and NCS issues, it only helped with the pain, numbness, swallowing and digestion. It took me about a year or two to really process what happened to me because I was simply in survival mode when the graft broke. I didn't cry, worry, get upset, I just came up with a plan of attack. Months later I started freaking out because I realized how close I was to dying. The graft broke into shards of bone, which thankfully shot out away from my spinal cord when it broke. I heard it collapse--make a horrible pop, then crunching, and then I started feeling like I was spinning and falling even though I was stilling still at my desk, having just returned to work only 3 weeks earlier. When I think back on it now, it still upsets me, and I have a sense of amazement that I'm still alive, but also now have some fear and anxiety about medical procedures. I would also like to share with you that before I opted for surgery, I tried EVERY less invasive procedure first. Physical therapy, occupational therapy, speech therapy (for the swallowing problems), epidural shots with steroids to try to improve the inflamation of the spinal nerves, disc, and cord, ice packs on my back and neck, exercises, pilates, inversion, accupuncture, etc.. I wore a soft collar to sleep in, then advanced to a hard collar to sleep in. It was only after I exhausted all options that I went on to consider surgery. All this being said, there still remains the possibility that your spinal problems could be the cause of your symptoms... my only suggestion to you is to proceed with great caution, but keep your hope going, and investigate each thing you try to make sure you understand the side effects or possible bad outcomes. Nina

I used to give blood when I was younger, before I was diagnosed. I gave 3 times, and each time I went into shock afterward and took hours to bulk my volume up enough to be able to get home. Personally, I would suggest you not give blood if you tend to have blood pressure drops already. Nina

Nice. I posted a comment praising ABC for carrying this story.

Oh wow, thanks for the shout out... and you're very welcome. I'm glad you have more good days now than you did beforehand, and that you're able to have time to fit in daily life most days. Folks who aren't sick have no idea what value completing the simplest of things can have if you've not been able to do them for a while. Nina

The place I bought mine, CoolSport, ships anywhere. I have a cool vest lite, in white. Here's what they have listed for international buyers: Orders from outside the United States are subject to additional shipping charges and custom duties. For all international purchases, contact CoolSport by phone (1-310-618-1590) or Fax (1-401-712-5545) I really can't recommend other types of cooling vests b/c I haven't used them, other than sharper image personal cooler, that was a piece of junk and not worth the 50$ I paid for it. Also, the ones that use a water based cooling gel sweat as they warm up, leaving your clothing wet/damp. The coolsport's inserts do NOT do this, which is why I ended up buying that brand as opposed to others. I know that the owner of the company has given a small discount to those buying for medical reasons in the past. Not sure if they continue to do so. Nina

I will reiterate what others here have said: you may get a mild response to florinef in the first few days, but it can take a few weeks to get full effect. If you're not hydrating and eating loads of salt, none of that matters. Personally, I snack on salted nuts--that way I get good healthy fats and protein, low sugar, and enough salt. My personal favorites currently are smoked almonds, and cashews. I also like to eat pickles, not just cucumber pickles, but pickles tomatoes too... when I'm in huge need of salt, love to eat Indian food, so I'll try to keep some takeout leftovers frozen. It's a bit hot right now, but I also keep salty soups in my car when I travel for work--lentil soup, tomato, etc. Personally, I do very badly on beta blockers, as well as some other drugs that sink my bp like a stone. For example, I feel hungover for days afterward with certain meds used to help regulate sleep, one of my docs had me try elavil, and it took me days to get my bp back up.

I'm so sorry that you're going through all this emotional distress--I only partly understand, as my relationship of 18 years ended in April. We have no kids, just pets; and because my partner was feeling guilty for leaving to be with someone else, I got zero resistance when I said I was keeping the all the pets. However, there is plenty of mental and physical stress from all this crazy emotional roller coaster riding--it wreaks havoc on the autonomic issues. I've been stressing so much about money and the house. I don't want to sell right now because we'll lose a lot of money (and I have none to give) and I'm being pushed big time to sell. All I can wish for is to break even, but I doubt that will happen. I would suggest you keep a journal of what your husband is doing that is damaging/selfish, etc. Take photos of your living situation, your kids lack of space, and all his excesses (cycles, cars, etc.). Document all the instance of the verbal abuse, and note if any of it was in front of your children. Try not to let him rile you up, it will only make you physically crash more easily. For me, I have practiced trying to stay calm and breathe more slowly, focusing on my breathing and trying not to "react" when it gets hard at home. Plan ahead if you can--see what resources are out there for you regarding legal assistance, disability assistance, medical insurance coverage for you and your kids. Knowing what your options are can help you feel less panic if things get to the point where you are deciding to end it rather than your husband saying it. I know it may no seem this way at the moment, but it sounds like, long term, that being away from him may be better for you and the kids. Do you have any family or friends who can help you? Are you doing everything you can to care for yourself and manage your symptoms without the meds? (getting enough sleep, using compression hose or an inexpensive version of pantyhose with support, eating enough salt and drinking enough water, etc.). Hang in there as best you can. I feel for you.

actually, tetanus is the least of your worries with a cat bite--cat bites can carry some really serious bacterial infection risk; usually if you've had a full thickness bite, even with good cleaning of the wound, you typically would be placed on an antibiotic as a precaution. You should call your doctor's office or go to the ER

certainly your grouping of symptoms could be a fit for a diagnosis of dysautonomia, but the problem is that there is so much overlap with other disorders that it's important for you to try to find a good diagnostician to sort it all out. DINET has a listing of physicians and centers that are accustomed to complication patients like us, and can get you closer to knowing the name(s) of what's going on with your health. http://www.dinet.org/physicians.htm

My cooling vest (mine is by coolsport) and my misting fan, which is about the size of a standard room oscillating fan, but is for outdoor use and has a fine mist that comes from attaching to your watering hose. It drops the temperature around it by 15 degrees F (9.5 C).

fluid in lungs is NOT a symptom of autonomic issues and should be checked immediately. I thank the other members who noted this before I did. Get to see a doctor ASAP...seriously. ASAP.

My pulse pressure can be as close as 5 ticks apart (millimeters of mercury). I've never been given any advice about dealing with it, but when I do get that close, I usually feel my most miserable.

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