amyksmith

One thing you don't ask about is BP - The propanolol decreased my BP too much, causing trouble with syncope, even though my tachycardia and shortness of breath were much improved. I'm on Florinef again now (third time trying it, with a few years between each round). It's week nine and the leg cramps aren't alleviated by the potassium supplements and my anxiety is absurd. But, it does give me some help with the hypotension.

Right now my neurologist has me trying prescription (obviously) amphetamine salts. I do not recommend this at all. It feels dreadful. I'm on week 8 and I'm about ready to beg to quit. Also, it's not particularly effective.

Hi - I've purchased my medical alert bracelets from an online place weirdly called sticky jewelry (stickyj.com). Weird name, odd-looking website but completely legitimate. I liked the variety of choices in chains and shapes for the actual engraved piece. I definitely agree with FaintingGoat, that it is much easier to read if you get the black paint put into the engraving. I have one that's the engraved piece as an oval shape with a stainless steel chain and a second one that's easily washed for working in the garden or exercising as possible etc. Neither cost more than $25. I've replaced the engraved oval on the chain one once because I didn't get the black in the lettering and it got too difficult for anyone to read (replacement needed suggested by an ER triage RN). Otherwise I have no complaints at all. I had mine engraved with exactly the wording my POTs doctor told me to use, so ask yours before you do it. But, for what it's worth mine says on four lines in all caps..... Orthostatic Tachycardia & Hypotension Freq Syncope He had all his POTs patients use that phrasing because he said too many EMTs didn't know what POTS was and the "orthostatic" bit prevents them from pulling you up too quickly. In my wallet and on the locked screensaver of my phone there's an "in case of emergency call" note. Good luck - Amy

I highly recommend getting a step ladder that is tall enough that you can sit on it while you prepare foods. I tried a stool but it doesn't help as much with blood pooling as the step ladder since with the ladder I can put my feet higher (closer to my butt) and that helps a lot. Otherwise I can't really manage too well with cooking/ food prep unless I can do everything sitting down at the table and just put a dish into the oven. No stove-top cooking for me at all anymore. As for dietary changes, mine were made mostly for my GI problems, but I saw some changes quickly and then the better changes after about 6 weeks or so. Good luck and try to adapt your environment so it is easier to stick with it.

Hi Gemma - They were unable to determine a precise underlying cause other than "auto-immune disease", but that's not for lack of testing/ trying/ looking. My primary care physician and I supplied them with all the medical records they asked for prior to me getting an appointment. She spoke directly with a coordinating neurologist, not me. But I know she told them about all my undiagnosed symptoms and illnesses in all organ systems. When I went there, my appointment was a time to "check-in" at the Neurology Desk. What followed was a consultation with two neurologists who also gave me an itinerary for five days of testing and appointments in various departments. I stayed in a hotel near the clinic and had nearly a full day's schedule for each day. It was all arranged prior to my involvement in person. It was like being on some kind of vacation tour where every moment is scheduled for you except for meals and sleep. I was kept quite busy and got exhausted. But, it's the Mayo Clinic so they know that might happen and they have people who can assist you in getting to your next appointment or test with wheelchairs or whatever you need. It's a full-service kind of place. If you want more detail about my experiences at Mayo, I'm happy to answer any questions, just PM me.

I also had the full paraneoplastic panel of blood tests done because one neurologist was convinced that was the only explanation. All mine came back negative. If there's a question, have them do the blood tests.

I can't speak to whether any of the Mayo Clinic locations is more fully equipped to evaluate Dysautonomia than any other, as I only ever went to the Rochester, MN location. I was there 5 years ago and I believe at the time that the Mayo Clinic website specified the MN location as where what they call the "Autonomic Neurology Subspecialty Group" was located, or so I assume because that's how my primary care doctor at the time and I chose the location. I just checked the website now and there is no particular location given. If I were wondering whether the location to which I'd been referred has an arm of that autonomic neurology subspecialty group, I would simply call and ask. They won't lie to you. Similarly, I believe that every location will consider all your conditions/ symptoms/ illnesses if you tell them when you're making your appointment what's going on with your body. In my experience, the Mayo folks wanted to know everything and wanted to send me from Neurology to Gastro to Endocrinology to.....all the departments they determined needed to see and test me so that they could make the best possible diagnosis of my health problems. It's great and it's also exhausting. Really just call them up and ask them if they have the autonomic neuro group and/or if, for example, you have a lot of GI issues, you can be seen by GI at the same visit as neurology (assuming you're making an out-of-area visit and it will be multi-day which is the only experience I have). Edited for grammar and also to add that I was in my mid-30's and undiagnosed when I went. I did not wait very long for an appointment -- about 2 months from initial contact which was made by my primary care physician (though that is not necessary). If anyone wants to ask me more specific questions about my experience, you can send me a message.

June Flower - Sounds like she has some of the same symptoms as I do, though mine have a different origin. Whatever else, please do what you can to counter anything other people say to her about her disease being "all in her head" or "only a psychological problem". Thirteen is such a challenging age to begin with and as everyone here would tell her if we could, her illness is very physical and very real. Undermining her self-awareness by telling her that her experiences aren't "real" is potentially as destructive as anything. I'm so sorry she hears that as a kid. It's challenging enough to hear that stuff as an adult. Good luck with everything. - Amy

Looneymom - Thank you very much. My doctors and I have been so focused for so many years on my symptoms but there's been no effort put into understanding the underlying auto-immune problem since before my Mayo diagnosis when I had a ten-day round of IV Ig which made no difference. Thanks for sharing your son's situation with me, it's given me something to think about and talk to my doctor about too. Docradmd - My tachycardia also improved with exercise but unfortunately exercise worsens my blood pressure, so I'm limited to nothing more than moderate exercise which is difficult since I miss it. The GI stuff is hard. I'm sorry to hear you're struggling with that. I too often wish it would all go away. But, if wishing made it so.... Good luck and thank you for sharing your experience. -- Amy

I look sick. I look very pale, kind of ashen at times and have almost bruised-looking areas around my eyes that don't go away no matter how much sleep I get (and they aren't from allergies). People who don't know about my illness often comment that it looks like I'm about to get sick (throw up) or "must be coming down with something". Then, since I don't sweat properly, in situations where it's hot and/or humid, I quickly turn so red in the face that it's more magenta/purple at my cheeks, areas on my neck. Also my head and neck get dripping wet -- like soaking the collar of my shirt, even though I'm just standing or (more likely) sitting there. That typically gets comments only from children so I assume it looks so awful that adults are too embarrassed to say anything. Hope that's helpful in some way. - Amy Edited to add: Oh, but I do not only have POTS which I see if your concern about your daughter's situation. I can't help you there, obviously, but I have autonomic dysfunction with GI, cardiac and peripheral neuro symptoms.

Hi - That's a lousy topic title but here's my question: Has anyone else had some kind of progression in their autonomic dysfunction that has changed their cardiac symptoms? I have auto-immune related autonomic dysfunction that affects multiple organ systems. My original diagnosis and clustering of symptoms was done at Mayo Clinic in MN. At the time my cardiac symptoms most closely resembled POTS and so I began the reommended treatment plan for that. Since my illness was sudden onset, auto-immune related, they advised me that with proper treatment and lifestyle adjustments, likely my illness (really sets of symptoms in three organ systems) would resolve over about 18 months as my immune system returned to normal following a massive viral load. That was five years ago. Recently my POTS symptoms became increasingly difficult to manage and I had five complete syncopal episodes (suddenly fainting with none of the light-headedness/ warning signs I usually get before my BP drops) that resulted in a series of concussions and ultimately post-concussion syndrome. Yuck. The post-concussion syndrome brought me to a different neurologist than previously, and anyway my POTS symptoms have always been followed in my current location by my cardiologist. Anyway after a series of trials with different medication combinations trying to keep my BP more consistently high (which is still low for a healthy person) so that there's enough "room" for a sudden drop in systolic that I don't faint completely, my neurologist posited that my cardiac symptoms no longer resemble POTS and for a trial period we reduced my very low dose BB that was supposedly treating my tachycardia. Indeed, I do not meet the criteria for POTS anymore with regard to tachycardia. So, here's my question -- has anyone else had their autonomic dysfunction progress such that their set of symptoms changed, particularly their cardiac symptoms? My neurologist confessed today that he is at a total loss now for how to keep my blood pressure consistently high enough to keep me consistently conscious. I've been homebound with a helmet on my head unless I'm lying down for seven weeks now and there's no end in sight. It's getting really frustrating. I'm on the verge of going back to Mayo, but as I do not need a diagnosis exactly (I know the underlying cause is dysautonomia) and my experience there taught me that they are terrific about diagnosis and testing, but as they can't follow up I'd rather not go back. Also, I'm now on SSD and no longer have the salary nor savings I did to help with the OOP expenses involved in going there. What I *think* I need is a neurologist who is more about being a clinician than into testing and who maybe has experience with other patients whose autonomic dysfunction progressed. But, really I'm asking you all for help since who else is there? For reference, my other symptom clusters have not changed and are still reasonably well managed by the same meds and lifestyle changes. Also for reference, my blood pressure does not response to stimulants anymore. For a long time I took midodrine every four hours and it was ok, uncomfortable but ok. More recently, my BP doesn't consistently nor predictably respond to midodrine, or other stimulants that my neurologist is prescribing off-label, like amphetamine salts (adderall basically) taken several times a day at max doses. Believe me, I feel effects of these medications in my head (ugh) and my GI tract (ugh) particularly, but careful monitoring and even graphing the readings shows that my BP isn't necessarily higher during the periods when those stimulants are most concentrated in my bloodstream. In fact, sometimes, my BP is at its lowest daytime levels during the medication peak concentrations. I'm on 0.1 mg Florinef daily and have been for 6 weeks, no BP benefits evident yet - but the side effects really stink. Well, any shared thoughts or related experiences would be appreciated. Thanks -- Amy

Hi - I have a lot of trouble with showering and especially with washing my hair (arms over head worsening the general trouble). I have tried taking lukewarm showers but it's both unpleasant and not all that helpful. Finally I've given up and I just sit. I can't fit a shower chair in my shower (bathtub) but I bought a plastic stool and use a rubber matt in the bottom of the bath tub. I can handle a warm (not hot) shower and wash my hair providing I sit except for turning around back-front once. As for drying my hair with a blow-dryer? Forget it. I don't. It's not worth the exhaustion it causes even if I sit while I do it. I bought one of those super-absorbant towels to get as much water out of my hair as possible and then it's air-dry. I know it's not very professional looking to show up at work with wet hair, but I'm on SSD at this point, so that's no longer an issue for me. Good luck - Amy

His office isn't so close to Philly, but I recommend Dr. Nicholas Tullo in West Orange, NJ (I think) -- check the list of docs as he is on there. I saw him when I lived in the area. - Amy

Hi Gemma - I went to the Mayo Clinic in Rochester, MN and had a full work-up for autonomic dysfunction in neurology as well as seeing doctors in gastroenterology and a neurologist who specialized in migraines. If your initial request/ inquiry for an appointment specifies which areas of specialists you need/ would like to see, they will arrange an itinerary of appointments and tests with multiple specialists -- at least that was my experience.

Ha! I had mine five years ago and I still cannot hear a certain Sarah McLaughlin album without feeling nauseated!!