Heiferly

Addison's shows up as low cortisol, low sodium, high potassium, *I think* (I am SO not a doctor so I could totally be wrong somewhere in there). That is UNDER functioning of the adrenal glands, right gang? But there is a test for Addison's and it's not just testing potassium it's that adrenal gland stimulation test that someone else mentioned above. That's the association I know of between potassium and adrenal gland, although I'm guessing there's more to it . . . anyone else know more on this and can fill in my blanks?

Ernie, do you have a form of periodic paralysis, or is it something different that causes your paralysis? You had genetic testing, right? Did insurance pay for it?

They said they have ruled out periodic paralysis but I'm still not perfectly clear on whether the test they did is 100% conclusive. First we decided that trying to test potassium during an episode was pointless because there is so much research showing that that is inconclusive, and I'm already hypokalemic much of the time anyway. So I said I wanted them to rule out HypoKPP some other way, considering I fit the symptoms so well. Well they did an EMG. But then I found out that that would most likely be negative between episodes even if I did have HypoKPP so I told them I wasn't happy with them using that to rule it out because it was meaningless. (They did it when I wasn't having paralysis because it's so hard to "catch" an episode.) So I found in a journal article about the SET/LET type of EMG, and asked that they do that. I got that done, but they said it was a test they about never did there so how can I be so sure they did it properly?? And is it 100% definitive for ruling out periodic paralysis if done between episodes?? I can't find the answer to that anywhere, though the neuro-musc specialist said it is. Medicaid will NOT pay for genetic testing. So I just gave up. The docs all thought I was crazy pursuing such a "zebra" diagnosis anyway and the neuro-muscular doctor told me NO WAY I would have HypoKPP at the same time I had the syncope going on . . . I brought him a journal article of a case study to prove him wrong. It's still in the back of my mind, probably always will be because I can't get the genetic test and my grandma had "MS" but back then the diagnosis was based on guesswork so it could've been periodic paralysis.

DD, do you know how to apply for emergency assistance here in Cbus? Is there a reason you are ineligible for assistance through Job and Family Services? Food stamps would help get you a more varied diet. They might be able to help you keep your apartment until you find a job--they do have emergency money funds but I know it can be a real pain to access. (I had to apply once to get help to keep my heat on one month in an emergency situation.) Let me know if I can help you navigate that at all if you want to apply for help. I don't know about jobs, but craigslist does sound like a good starting point. The Lantern (OSU student paper) may also have listings or the Dispatch, and both have their classifieds online. HUGS, Heather.

The odd thing about the hypokalemia is that if you wanted to explain the reading TODAY, it would be easy to explain away. I'm salt-loading and taking fludrocortisone, so those in combination could easily explain hypokalemia. However, the hypokalemia started way back when I first got sick two and a half years ago. Back then, they had no clue I had dys, so I wasn't on fludrocortisone (just started that perhaps late august this year) and I wasn't salt loading (that too was relatively recent with the addition of midodrine to my drug regime). In fact, due to growing up with a father in renal failure, I'd lived a life devoid of salt shakers and surrounded by unsalted potato chips, etc. so my salt intake was WAAAAAY below a normal US diet. I kept telling the docs that I was a vegetarian and got relatively much more potassium in my diet through fruits and veggies than a "normal" person does, yet I kept testing low over and over. They're FINALLY sending me for more testing now, but I get the feeling the specialist is just going to say "oh, it's because of the salt and fludrocortisone" and blow me off.

I think it's actually more than 3g daily, isn't it? If you are drinking tons of water, you could easily need more salt than that, I believe. Someone else want to help out on this one? I think the nutritionist I talked to said upwards of 5g of salt for the high salt diet if drinking 2+ L of water . . . or is mine just higher because I'm running the fluid deficit? At any rate, the nutritionist said fast ways to get dietary salt: -pickles -olives -soy sauce

Ugh, mental lapse . . . I forgot to say: WELCOME!!!!! I hope you find lots of help and information here. It's a very supportive place!

Does anyone feel nauseated by the blood pooling in your abdomen? I don't know if it's my imagination, but I get the sense some days that when blood starts pooling too much in my abdomen that THAT is what is causing my nausea more than anything else. Maybe it's just coincidental with my other orthostatic intolerance symptoms from too much being upright that day and I'm just making that up, but some days it really seems that way to me and I wish there were a quick-release to get the blood out of my abdomen to stop the nausea. When I get that feeling, the promethazine (phenergan) doesn't even touch the nausea. Anyone else ever get that? Has anyone found wearing compression/shapewear over the abdomen to HELP with nausea rather than exacerbate it?

Florinef is (and please, by all means, someone jump in here and correct me if I've got this wrong!!) supposed to cause us to retain more fluid. If there is more fluid in the circulatory system (more blood volume), there should be less of a drop in blood pressure upon standing from blood pooling. Theoretically . . . some people just don't see results from it. Some people have side effects they deem intolerable. Some people love it. Your mileage may vary. :-p Some docs seem to swear by the stuff though whenever they see orthostatic intolerance! It is by no means an across-the-board treatment for dysautonomia, so unless I'm way off base here and someone needs to jump in and set me straight, I don't think it'll do anything for nerve problems. In general, nearly all of the meds they give us are targeted to a specific pathway and thus address one set of symptoms or another but I have yet to hear of anything that acts as a miracle cure to fix all autonomic woes in one fell swoop. Rather you have subclasses like drugs for serotonin, norepinephrine, vasoconstriction, blood volume, pain, nausea, insomnia, IBS, etc . . .

I am so glad to hear that you are safe and sound!!! How scary!!! I don't drive any longer. I kept my car for a few months after I stopped driving in case it was going to be a temporary thing, but once we realized this wasn't just going to pass quickly, my mom took my car so I wouldn't have the burden of paying insurance etc. Admittedly, I have lost quite a bit of freedom in not being able to drive, but I willingly surrendered my license because I couldn't stand the thought of being responsible for hurting or killing an innocent person. On the bright side, there are programs out there to help transportation needs for people who can't drive due to disability. Finding even one of these programs that you can qualify for can take some of the strain off. I'm sorry to hear that happened to you, but so happy to know that you are safe and didn't get hurt!!

Sandy, I had to laugh when I was reading your post. I have been hypokalemic on my labs for 2 years now and I was getting copies of the labs myself. The doctors would say "everything is normal" and I would say "no, this is LOW." For two years, this goes on and no doctor really would take it seriously. I did get them to test for hypokalemic periodic paralysis but I could tell they were just humoring me and after that came back negative, they ignored it again. Finally, I was inpatient in the hospital and they get the same low reading that's been coming up for years and a doc there goes OH MY this is too low! IT ALL DEPENDS WHO IS LOOKING AT THE TEST RESULT AND WHAT THEY CONSIDER TO BE "GOOD ENOUGH." Once the hospital said it was too low, suddenly my regular docs take an interest in it. After 2 years of ignoring my pleas to pay attention to it. You are so right. It has to be a lesson to us all to always get copies of our own test results and double-check to see if the are borderline. Sometimes you have to pursue these things on your own!

I wear the 20-30 mm/Hg waist high compression hose (Rx) . . . that is, when I can get them on, LOL. The tactile allodynia makes getting them on disagreeable pain-wise, so I need help. I have one pair that are black and I think are vastly more attractive than the "nude" (medical-looking) ones. The black ones, paired with thigh-high boots and a cute skirt look like normal tights for winter.

I'm on depo also, and haven't had a period in years. I can't say anything but good things about it. I don't think I have weight gain because of it. I battled extremely heavy 10-day long periods since I hit puberty with cramping so bad I couldn't function. I started BC pills very young to control that. But the pills had so many other issues, side effects, interactions with antibiotics, and on and on . . . no matter which ones I tried. Then I had surgery on my ovary and I was having even more pain, and my doc suggested I try depo. Depo has just been great. It took several months to get adjusted to it where I was still having some bleeding, but once I got to having no periods--woohoo!!! My sister has been on it even longer than I have and also swears by it.

Disclaimer: This may be TMI for some folks. It's all about my urinary habits with my paralysis, LOL. So skip this one if you want. I get paralysis too. It's hard to say about feeling like I'm going to wet myself after the paralysis because I know a lot of times I do, but some of those times I know why. Some of the times I end up in the ED and they pretty much always put a catheter in and when they take that out then I feel like I'm constantly going to pee myself for the next day or two. But I'm trying to think of the other times that it happens . . . I know that while the paralysis is just wearing off I get a VERY strong urge to pee but then if I have a bedpan it will be the tiniest trickle not the huge gush I thought was coming. And then after I'm done I'll feel like I still have to go but nothing is there. But that wears off pretty soon once I'm fully up and at it, I think. I feel for you when you say you've given up on getting your local docs to take you seriously. A couple of my docs do, but I saw the turning point when my neuro decided I was a total nutcase the end of this summer. And I wonder more and more if my other docs are beginning to think that at least the paralysis is more in my head than anything, and that maybe I'm a bit crazy. It gets to a point where all their tests come back negative so it MUST be all in my head. Sigh.

I think I paid about $50 or $60 for mine, it's a Mio Breeze. It is VERY useful for being out and about--exactly as said above--you can know when you're getting into trouble standing too long! You do have to push the buttons to get a readout, but I've made a habit of checking regularly since I got it and I have found it to be worth the money. Also, it's quick "proof" to friends/family members if I say I feel sick and need to quit doing X that something really is going on. Not that I should need proof . . . but you know how things go sometimes . . .

It's after 2 AM and I can't sleep. (Normally I would've just collapsed from exhaustion by now.) I've got myself all stressed out over the stupid neurocog tests. They told me it'll be three weeks to get the results back in the mail, but I already know the gist of everything from being in a related field myself. And I think I liked it better when I knew things were getting worse, but it wasn't in such stark detail right there in my face, you know? Now I feel stressed out and I can't stop wondering if there is some damage to my brain as my GP seems to be suspecting. :'-( I just can't calm down enough to sleep, even when I'm not directly thinking about that stuff, I'm still feeling anxious and upset and I know that's why. Ugh!!

Flop, Thank you so much! I am emailing my doctors right away!! I used to have a medtronic Reveal; now I have a Transoma Sleuth. (Long story on why I got a second ILR after the first one was removed, LOL. I'll save that for another time.) But I will have them contact Transoma to see if they can do the MRI with the loop recorder in place. This would be very helpful! Thank you, thank you, thank you for this info!! Heather.

I feel better with MSG. And I'm a migraineur . . . so you would think it should trigger migraines for me . . . but so far I've never seen that correlation. There are other food additives that have similar properties to MSG so if you are sensitive to MSG, do you also have reactions to those? Those who do react might want to watch out for: "hydrolyzed vegetable proteins, autolyzed yeast, hydrolyzed yeast, yeast extract, soy extracts, and protein isolate, any one of which may appear as "spices" or "natural flavorings." The food additives disodium inosinate and disodium guanylate are usually used along with with monosodium glutamate-containing ingredients, and provide a likely indicator of the presence of monosodium glutamate in a product." (from wikipedia)

This may not be what you want to hear, but it may be an issue of pacing yourself and conserving energy. I know when I had my sleep study they didn't find any apnea or anything, and when you read about POTS you see the statement "POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time." To me it's a no-brainer: for those who don't have good symptom control, fatigue is going to be a major issue. I imagine almost everyone on this forum has had to give up certain things and make changes in their lifestyle at some point because they didn't have the same energy they had when healthy. I hope I don't sound terribly negative; I just think that is the reality of it and I think we can find inspiration in the people who are creative with it and manage it with a positive attitude. It may be about letting the dirty laundry pile up for an extra day or two so you can squeeze in the nap that gives you the energy to do something that's a higher priority; some people have worked out ways to take naps at their jobs or in their car if need be. Definitely talk to your docs and explore your options as to what can be fixed, but I think that fatigue is pretty inherent to POTS until they get your POTS symptoms under control.

Great day for this topic to come up--I just had the test done today! Mine was for purely medical reasons, not educational. I can perhaps have a little more insight on what was being tested because before becoming disabled I worked in a peripherally related field and occasionally assisted in the administration of similar tests to some of my students. I know that one of the tests was a non-verbal IQ test based on visuo-spatial skills and a couple of other sections relied on similar skills (like where there are three pictures of complex color/shape forms and you must pick from the choices the fourth one that completes the set). There was a test involving placing pins with either the right or left hand, and I am not entirely clear on what this assessed but I know handedness (whether you are right or left-hand dominant or ambidextrous) gives them some insight so perhaps a problem with motor skills, particularly unilaterally, would indicate a certain type of dysfunction. (Different tasks are localized in either hemisphere of the brain, so damage to say the left hemisphere might affect the right hand as well as certain types of reasoning that rely on that hemisphere.) There were several tasks that tested working memory including visual, phonological loop/auditory (remembering as many words as you could from a long list that had been read to you or numbers or letters), and kinesthetic/tactile (touching blocks in a certain order, doing a dot-to-dot). There were a couple of sections that tested your ability to learn new things (stories told to you, things from the list that had been repeated several times, figuring out the rules of a game by trial/error--maybe that was more IQ related?). There was one test of remembering people's faces that you had been shown and I BOMBED on that, LOL. The forms they had sent me in the mail said the testing would take 2 1/2 hours, but it only took me an hour and 45 minutes. I'm pretty sure I finished so quickly because there were several of the tasks that we stopped after just two or three tries because I was unable to do them once they reached any real level of complexity. For example, for one task she would say a sequence of randomly ordered numbers and letters aloud and then I would have to say them back to her, but in order with all the numbers first from least to most and then all the letters in alphabetical order. Once there were more than three she was saying at a time, I couldn't hold them in my head long enough to reorder them and say them back, so we had to quit. I can't really say if brain fog would show up for everyone or not, because my cardiologist says the rapidly progressive memory problems I am having are not typical of POTS. My GP sent me for the testing because he is very concerned about what could be causing the problems. I personally feel that my brain is being starved of oxygen over and over again when I pass out and go into tonic clonic seizures and what have you, and that maybe this is causing damage, but when I have hinted at this by asking questions the docs have given every indication that they think this is a stupid idea so I have dropped it. However, if you read what Dr. Grubb has published in articles, it does talk about poor cerebral perfusion during syncope and I read elsewhere of doppler studies of cerebral perfusion during TTT and those showing poor oxygenation of the brain; perhaps Dr. Grubb will know if it is possible that having so many syncope episodes and seizures may have damaged my brain. At any rate, I haven't had an MRI/MRA in two years because of my cardiac implant but my GP said depending on the results of this testing he may ask my cardiologist if they can do the surgery early to remove it so they can get an MRI to see what is going on to cause the progressive memory loss. I also really wish they would do the testing with me lying down and with me sitting up, as I suspect I think at least 50% more clearly when I'm lying down flat and not having any orthostatic symptoms! Sorry for blabbing on . . . ask me more questions if I didn't describe it well enough. It's really not too grueling, just kind of embarrassing when you just can't do things that you know you should be able to.

Is there any chance you could get evaluated by one of the big-time autonomic experts--Mayo or Grubb or something? It just seems like something autonomic but something different than POTS is going on . . . might take a real autonomic "guru" to pin it down?

When you say you don't have the rise in heart rate upon standing, are you comparing only to sitting? I ask because when I first got sick I had a normal resting heart rate when sitting. But I have gotten progressively worse over the past two years, and now I rarely have a resting heart rate when sitting up. My heart rate is normal when I lie down (about 65) but sitting up bumps it up to about 90 and I start getting some orthostatic symptoms like nausea and a little dizziness. Standing bumps my heart rate instantly to 110, and it just goes up from there depending on how long I stand and if I try to do something active. So, the short of it is that I don't consider my sitting heart rate as my "resting heart rate" these days because I know I'm having orthostatic intolerance symptoms and have already had an increase of 25 bpm by the time I'm sitting fully upright. Do you take your heart rate lying down compared to standing to see if the difference is between those two?

I have read in various places either 6 months or 1 year without any seizures or faints before you should be driving a car again, and even then you should get the "green light" from your neuro or cardiologist before resuming driving. You definitely can faint while driving. I do not have a driver's license or car anymore because of syncope and seizures though I never had one behind the wheel--just having them at all is enough to know that you don't want to put your own and other people's lives at risk. To me it is a cut and dry issue because it would only take one time to pass out and cause an accident and harm or kill an innocent child and I could never live with myself. It just isn't worth it, no matter how much hassle it is to get around without a car. There are different agencies available to help provide transportation for people who can't drive due to disability. City buses often have programs that will do door-to-door transport for people who can't get to/wait at bus stops for whatever reason, so if you live in a city near bus lines call the bus company and ask about handicapped programs. Cab companies, as mentioned, may have special programs too. Social services agencies may have special programs. Epilepsy foundation may be able to refer you to programs as many people with epilepsy need to seek alternate transportation arrangements. Insurers may provide transportation to/from Dr. appointments.

I've fainted after peeing before. Fell right off the toilet, and of course it just HAD to be one of the times I didn't come to right away. So Alex came looking for me. Pants around my ankles, TP wrapped around my hand, flopped on the floor and I was aspirating my saliva so he had to call an ambulance. I'm glad I was out so I couldn't be embarrassed for myself! Oy vey ismir! Yeah, apparently it's part of the whole vasovagal thing.

If you are willing/able to travel to the US, I would recommend Dr. Grubb. I am already at one of US News and World Report's "Top Hospitals," and even so, my cardiologist is sending me to Dr. Grubb because he said Dr. Grubb is THE guy to go to for autonomic stuff. He has published textbooks on this stuff, and many articles in medical journals. My cardiologist says he has sent other patients to Dr. Grubb who were not doing very well, and Dr. Grubb helped them immensely. As I believe someone else mentioned, there is a long wait to see him so if you do decide to, try and get the referral as soon as you can.