Heiferly

If it's an electronic machine that is reading "Error" it may not actually mean that your BP is too low to measure, but that your pulse pressure is too narrow. Many of the machines will throw an error reading if the systolic and the diastolic BP are too close together. This happens not infrequently to patients with certain types of dysautonomia when they are upright. (I've nearly tossed my machine through a window for this reason.) If you call the company that makes your machine, they can usually tell you the lower limit of blood pressures it is guaranteed to be accurate down to; I was surprised to find that my machine was capable of taking extremely low readings (which left me with the conclusion that my "errors" were due to my unusually narrow pulse pressures).

Can you talk to your supervising doc at cardiac rehab (or your cardiac nurse if that's who decides what your exercise program there is) about your concerns? It sounds like maybe your goals there need to be revamped a little? When I did cardiac rehab I never did manage to graduate up from the recumbent bicycle to any of the upright machines, even though other dysauto patients they'd had there in the past had done other machines (even the treadmill). Things have to be individualized to what each of us can tolerate and what makes sense in each case. I was still fainting from time to time just using the recumbent bike, and they were still having a tricky time keeping my HR in my target range on there, so that's where I stayed! Here are some tips that helped me make progress over the time I was in cardiac rehab: 1. They kept a "crash mat" (gym mat) right next to the machine where I exercised, and always reserved a bike RIGHT next to the nurse's station for me so they'd be ready to assist me down onto the mat if they saw from my EKG that I might be about to faint. If my HR got too high, I was told to slow down (or stop as the case may be). If I looked "fainty" (skin discolored either flushed or pale, eyes glazed over, speech slurred or not able to clearly answer questions, etc.), they put me down on the mat before I had a chance to actually faint, and elevated my feet. 2. We found that a REALLY long and slow warm up and cool down period significantly extended the period of time that I was able to tolerate exercise, and cut down on exercise intolerance. I mean about 10 minutes of going *painfully* slow, like barely moving slow and really gradually building up to actual exercise. Another 10 minutes of really slow, gradual cool down. Very, very, very boring but it did seem to help a ton. 3. I cannot overstate the importance of my 40-50 mmHg thigh-high compression stockings. I only forgot to wear them to cardiac rehab once, and it was a total disaster. 4. Powerade Zero and I were also best friends throughout cardiac rehab. I tried my best to drink, drink, drink whilst working out which also seemed to help (except for making me have to pee too much). The downside of this was that I noticed my BP would shoot up whenever I got a full bladder and I'd have to stop to use the restroom or else my BP/HR would start to go haywire. Weird ... All that being said, I'm surprised they let you work out when you started with a BP of 90/60ish. Was that sitting or standing? I don't think I would have been allowed to participate if I were having that bad of a day, unless I sat and rested and drank something and managed to get it to go up somehow first. Also, did they really let you keep going after passing out on some days? Are your HRs being monitored just on the machine, or are you on telemetry and the nurses watch your EKG on a screen to monitor you? What target heart rate range did they say they want you to stay in when you got your evaluation for cardiac rehab (because it sounds like your HR is bouncing around a ton)? I'm sorry you're having a hard time with it. I really enjoyed cardiac rehab and I think I benefited a ton from it; it sounds like maybe they're just having you go for too much all at once instead of pacing yourself. I hope you can talk things over with your doc/nurse there and see if you can re-evaluate your treatment plan to something that's a better fit for you.

I don't have a definitive answer as to why, but yes, I've done the ptosis thing too. I had it intermittently for over a month (if I remember correctly...it's been years now) when I first came down with POTS. I also have migraines, which could possibly account for the ptosis, particularly since it was unilateral; however, this explanation doesn't resonate with me particularly strongly because of the timing of the episodes I had. I also have narcolepsy with cataplexy, and while cataplexy can manifest in all sorts of weird ways, it seems unlikely that it would be one-sided. All things considered, having POTS, cataplexy, and migraines, I suppose I should be surprised I'm not having more odd bouts of weakness, paralysis, and altered sensation than I do. :-p But for what it's worth, it could be the POTS that caused my ptosis, in which case you're not alone. (I should add that MG was ruled out in my case.)

Have you tried anti-nausea/vomiting meds like phenergan, zofran, or reglan--perhaps that would stop the dry heaves? Perhaps your GP would be willing to help you out with medication to try and tide you over until your appointment with the GI doc since it's so far off?

I take a baby aspirin every day since I started in with the POTS. Haven't had any problems with it, so can't really advise on what to do in your circumstance. What type of allergic reaction do you have with it? A rash or something more severe? Please be careful and don't make yourself sick if you've got a bad allergy! HUGS!!

I take Provigil for narcolepsy. I found the overall increased HR and increased tachycardia tolerable, since I deal with postural tach daily anyway. However, a couple of weeks into taking it I started struggling with respiratory side effects as well and had to cut back on the dose and divide it into two separate doses each day. At this dosage, it isn't as effective at increasing alertness, so I'm not sure what I'll end up doing. I did have loss of appetite at the previous, higher dosage.

There's also PubMed: http://www.ncbi.nlm.nih.gov/pubmed/

I'll be keeping you in my thoughts. So sorry this happened to you. Glad he won't be practicing anymore. HUGS.

I have heard autoimmune as an explanation, but have not heard of people being put on that kind of antibiotic treatment with the presumption of an infectious agent. I would definitely want to know the risks involved before trying anything.

I'm so sorry you had to go through this. I know how frustrating it can be. My only tip is that I usually try to shower the day before I know I'm going out to conserve energy the day of. But when all else fails, I think Mae has the right idea!!

"Please print that out, so I can add it to my many mis-diagnosises binder." May I quote that? That's my favorite thing I've heard in eons! It might even make a soothing mantra on some days. :-D

I saw a different doc there, Dr. Jaeger. You will get a folder in the mail from Cleveland Clinic that will contain information on numbers to call to inquire about discounts at nearby hotels (if you haven't already). I didn't stay overnight, so I'm not sure how that works. Hopefully someone with experience going there from out of state can give you more information on how quickly the scheduling works, too. You definitely want the doctor to know about your symptoms, but I understand your concern about coming in with a huge list to bombard the doctor. It can't hurt to have everything written down, but maybe highlight the things you feel are most important and realize that you may not get to everything in your initial meeting with the doctor. Good luck with everything!

Babbette, I'm sorry I don't have any insight into the breathing/choking spells you're having, as the breathing problems I'm currently having seem pretty different in nature to what you're describing. I did, however, want to say that I can relate to your swallowing difficulty. I, too, have problems with swallowing, particularly with thin liquids. It's like they're too fast for my throat to keep up with, and before I can coordinate to swallow properly, it starts going down wrong and I end up choking. It certainly doesn't happen every time I drink, but it's definitely frequent enough to be abnormal and disconcerting. At any rate, I wanted to let you know you're not alone on that one. My doctors locally said that can be autonomic-related, so I mentioned it up in Cleveland and I'm waiting to see if they'll do/say anything about it up there. I hope you get help with the choking spells soon! I'll be keeping you in my thoughts.

(To reply without quoting, hit the "add reply" button at the very bottom of the page instead of the "reply" button that has the picture of the quotation marks on it. I'm not sure everyone is always aware of the difference, or is purposely putting the quote in their replies.)

I can't give you any advice on the ablation, but just wanted to say I'm sorry you've been through all this and are still having problems.

I'm about to have the same test at Cleveland Clinic; this is an excerpt from the pamphlet they gave me regarding the test. "During the Test IV Placement: An IV (intravenous) line will be placed in a vein in your arm. The IV is used to take blood samples for blood tests ordered by your doctor, and to inject the radioactive isotope and tagging agent. If necessary, medications are delivered through the IV during the test. Blood Volume Analysis, Blood Tests: During the blood volume analysis portion of the test, a small amount of a radioactive isotope, or tracer called iodinated-RISA, is injected. If you are allergic to iodine, IVP dye, shellfish or eggs, the test will be modified to minimize any potential risk of an allergic reaction. Blood samples are then taken and analyzed. The blood volume test is used to evaluate if the amount of blood in your body is appropriate for your gender, height and weight. A hematocrit measurement is also taken. This blood test calculates the percentage of red blood cells in the bloodstream. A low hematocrit reading may indicate the presence of anemia. Other blood samples may be ordered to determine the level of certain blood pressure-regulating hormones produced by your kidneys and adrenal glands or to test for electrolytes in the blood, such as sodium and potassium. Will I be awake during the test? Yes. You will be awake during the test. You will lie on your back on an exam table for the entire test. Minimal movement is allowed during the test, except for sitting up, to allow accurate recording of the test results. We will try to make you as comfortable as possible during the test. How will I feel during the test? Throughout the test, the nurse or technician will ask how you feel. You may not have any symptoms, or you may experience pre-syncope symptoms (called premonitory symptoms), such as light-headedness, nausea and palpitations (fluttering in the chest). It is important to tell the staff how you are feeling throughout the test. Adjustments can be made between sets of images if necessary to make you more comfortable."

Because my appointment was scheduled for 3 PM and I have to see the doctor before any tests can be performed, they said they won't be able to schedule any testing for the same day. So they will schedule them all for another visit and I will have to drive out another time. Oh well, at least I got a definite answer so I knew whether or not to stop meds. (I was particularly concerned because I just started Provigil yesterday and figure I'll have to go off that because it is accentuating my tachycardia and will skew test results.) For anyone considering going to Cleveland Clinic for testing, I should add that Patty, Dr. Jaeger's secretary, has been extremely kind and helpful over the phone. If I could choose a model for how I wish every Dr.'s secretary would treat me as a patient, she would definitely be it. To be quite honest, so long as the people there continue to treat me with such respect and kindness, I'll gladly overlook a few inconveniences.

I got a call from my doctor's office saying that I have an appointment with a Dr. Jaeger at 3 PM. That sounds suspiciously late for a full day of testing ... do they insist upon you coming out for an intake appointment first (and thus having to make more than one trip)? Is anyone familiar with this Dr. Jaeger? I asked her when she called what she had scheduled for that day and she said she didn't know; I wish I could say I'm surprised to hear that they accomplished the feat of scheduling me for an appointment without knowing WHAT they were scheduling. *Sigh.* I'll try calling Cleveland tomorrow to find out from their end what ended up getting scheduled.

My cardiologist decided to give me a referral to get an autonomic workup at Cleveland Clinic. How do they decide what tests they are going to run? Is there a set battery of tests they do on POTS patients? Or does my doctor need to specify what tests he is referring me to have performed? Or does CC decide what they think needs to be done? Is it all decided in advance, or do they possibly add more tests while you're there depending on how things go? I just want to make sure this is all set up properly before my family makes the trek to cart me up there, and I don't think my doctor's office has any experience scheduling these so I'm a little apprehensive. If I call to confirm once the appointment is made for me, are there specific tests I should make sure they've lined up? One thing that my doctors here have not addressed at all is my skin pain. Does the autonomic clinic there test for small fiber neuropathy? Sorry to ask a million questions. I just want to be sure that I make the best use of this opportunity to get more sophisticated testing than what I've had locally.

I'm in too. I have to say I'm slightly relieved to see so many others relating the same types of episodes, even though I wouldn't wish this on my worst enemy. I'm very grateful that my better half has become an expert at guessing the intent behind my slurred speech and bizarre attempts at communication during these episodes. Oh, and he has affectionately termed my lack of coordination when walking during these times my "bobble body" (the inverse of the better-known bobble-heads).

POTS is not specifically covered by social security disability, so your doctors essentially have to make the case that it is "equivalent" in terms of its disabling effect to some disease(s) that is/are enumerated on the list of covered diagnoses. At least this is how I understand the process, by all means someone correct me if I am wrong. It certainly is possible to get on SSDI with POTS (or even the symptoms thereof, pre-diagnosis, which was my status when I got approved for SSDI).

I've had major weight gains and losses since I've had POTS (as much as 50 lbs either way). The gains seem to be med-related, and the losses I had to FIGHT my way back to my normal weight after I got off the offending meds using mainly diet (due to exercise intolerance). I definitely don't easily lose weight since having POTS, and if anything, I am prone to gaining unless I restrict my calories.

I put no for misdiagnosed, but I went with no real diagnosis for a long time while they bounced me from specialist to specialist and ran test after test. I wonder how many people went UNdiagnosed for an extended period of time like I did, not exactly misdiagnosed, but in limbo nonetheless. (Actually, they technically "misdiagnosed" me as just vasovagal syncope before they caught on to the POTS, but I count that as a near-miss and not a true misdiagnosis.)

Midodrine 10 mg every 6 hours (4x daily, yes I take it even when I'm in bed at night, contrary to the manufacturer warnings--I do not get supine hypertension from it) Fludrocortisone 0.1 mg every 12 hours Salt 3500-5000 mg/day Water/Powerade Zero 96-128 oz/day I tried a beta blocker but could not tolerate it. I take many other medications, but those are the things targeted to my BP/HR. My blood pressure has stabilized quite a bit but my heart rate still increases >30bpm upon standing and frequently goes >120bpm, so I wouldn't say I have great control. My frequency of syncope has gone down, but I still do faint.

I get different kinds of skin pain too, but haven't gotten any answers from my doctors (and believe me, I've tried complaining to every "flavor" of MD that would listen--GP, neuro, cardio, endo, you name it). -What I believe is called allodynia, any area of skin with hair follicles seems susceptible (never get it on bottoms of feet or palms of hands, so I really do think it has something to do with the hair follicles?), even eyelashes seem to hurt when it's bad. Everything that touches my skin when this is flared up feels like steel wool, no matter how soft it actually is. Because I have migraines, I think it's likely this is related to the migraines, but I'm not sure. [i did find a research paper about migraines and allodynia once, I believe. If anyone is interested I could try to dig it out.] -Hyperalgesia: levels of heat (for example, the temperature in the shower) that I used to enjoy now feel scalding to me, things that might have been a little annoyance but not real pain (like tweezing a stray hair from my eyebrow) now seem like searing pain, ... it just seems like my skin has turned the dial up on pain and over-reacts to the slightest things. -Prickle burn ... I guess this is a sign of neuropathy? It's mostly on my legs and a patch on my upper back and it flares up especially with exposure to heat. I guess what I'm saying is that I sympathize. But I haven't found any solutions, because every doctor I talk to about this says they'd rather address some other "more pressing" (to them) issue first, and never gets around to my pain. Are any of you guys getting help for skin pain?