firewatcher

Hi all, just got back from my children's new school orientation. First there was an assembly in a warm gymnasium, then two classrooms of standing and listening to teachers...I ended up sitting on the floor. The tunnel-vision started creeping in, my head started to hurt from trying to concentrate, and I am still shaking: all of this is while on meds! Last year all "this" started the week before school started ( one year to the day today ) I missed all last year and let one of my boys slide backward in school due to brainfog and fatigue. I am just now getting caught up on all the work that I had to put off from nine months of an unmedicated tremor: I thought I was doing well, until today. I don't want to lose another year of my kids' lives, I want to be involved again! I am just stressing out, I know. Somebody, please talk me down. Jennifer

I guess I should clarify: given the question of Diabetes Insipidus, the fortune cookie was exceptionally appropriate, but should have read: "Drink for your health" I would NEVER drink adult beverages on Klonopin (not if I wanted to wake up again afterwards!) Actually all of my "psychic" doctors have been closer to the mark than the logical ones. It's frightening actually, all that time and money invested in medical school and all they needed was the thing that tells birds to fly South for the winter! Anyone else have good experiences, or bad experiences with doctors who work "from the gut?" Jennifer

Michelle, If it was me, and I had it to do again, I would wait a little while and just allow myself to feel better. I started exactly those two meds (prescribed by my neuro, not a cardiologist) and began to feel better immediately. Unfortunately, I pressed on to "find the answer" and instead I have other doctors screwing around with the medications and I don't feel like I did. If I could do it again, I would wait, and SLEEP (oh the years without it!) and recover. Try to get in with one of the dysautonomia experts, that will take a while anyway. Take the time to complete a thorough medical history on yourself and get all your records, and try to get some of your life back. I am glad you are feeling better. If it was me, that is what I would do. Jennifer

Whooo hooo! Way to go!

James, I just remembered, there are amber-colored glasses called blue-blockers that are made to cut glare from TV and computers. They are supposed to reduce eyestrain. I had a neighbor that wore them all the time. I found the yellow tint made me nauseated, probably another migraine thing too. Look them up, they may help. Jennifer

I don't know if I have dysfunction, but my pupils have always been large and I am hypersensitive to glare and bright lights. I have Rx sunglasses that are double-dipped in tinting solution so that they are twice as dark as normal lenses. I find that I tend to close the hypersensitive eye. The opthamologist loves me because my pupils open so far, it takes a loooonnnngggg time to get my vision back after they dilate my eyes. I also tend to wear the sunglasses inside if there are florescent lights. I always figured it was a nocturnal thing since my circadian rhythm is out of sync. Jennifer

Hi guys, I quit with the doctors for now...two weeks with no appointments. How do you react when a doctor says that he is basing his diagnosis on "gut reaction, instinct, or feeling?" Aren't we going to doctors for education, experience and knowledge based on data and test results? I've had good experiences with both the intuitive and the logical types, but I am constantly surprised how often these "feeling" based comments come up. I guess I should eat more Chinese food, my fortune cookie said "Drink to your health." Use the force, y'all! Jennifer

Thanks, I showed that article with that quote highlighted to every doc that mentioned DI. That was how I got to the top of the food-chain doc. No one knew the answer to whether it WAS DI or was NOT DI, and it seemed like all the docs were plucking daisy petals (she's got DI, she doesn't have DI, she's got DI, she doesn't have DI, she's got......) I thought it would be an easy question, but apparently it is not. I do intend to ask point blank when I get to Vandy, so that I have a definitive answer to give you all. IF it WAS DI, I would be looking at a whole other system and autoimmune endocrine failure which could be treated and possibly reversed if it was caught in time, if it is NOT DI then it is POTS and works on a whole different system. And on and on it goes.

Revisiting the DI diagnosis again...Yesterday I saw yet another Endo, this time the grand, high, muckety-muck, head of the department doc. He says that I do not have DI. THis was his medical reasoning: because my electrolytes (sodium, potassium, etc.) are not out of whack unless I am on dDAVP, AND because I managed to concentrate my urine after 6 days of fluid restriction (less than 2 liters fluid intake a day,) I am producing vasopressin...therefore I do not have DI. He did not know much about POTS, actually nothing, and had not ever heard of someone's heart rate jumping like that. He thinks that whatever mechanism in the ANS dysfunction that causes the frequent urination, is causing mine. Just like me, he is eagerly awaiting an explanation from Vanderbilt in November. (Very nice doc, by the way, he spent over two hours with me until after 5pm! Highly recommend this one if you need an Atlanta Endocrinologist.)

John, Also look into Circadian Rhythms. Most heart attacks happen in the morning, due to Circadian factors. When you have dysautonomia, it screws with your circadian rhythms. You may be a night owl to begin with, so your circadian clock is out of whack already (like I am.) Some of us, if we are allowed to keep our own schedules (not what society says, ie. 9-5) do not have such extreme POTS symptoms. If I can sleep when I want, and wake when I want, I am not as fatigued and the HR does not spike like it does at 6:30 in the morning. Good luck!

Hello Katja and welcome! I am sorry you are here like the rest of us. THere are several ways to look at the cost of the TTT. Is there any reason that your insurance would cover it? Have you fainted several times? Even if you go to an ANS specialist you may not need the TTT, there may be enough evidence to treat you without it. I wish my docs had recommended a TTT to begin with, paying ourtright would have been a lot cheaper than 2 MRI's a CTscan and a host of copays to eleven doctors that did not know what they were looking at, a lot faster too! If you can get to an autonomic dysfunction specialist, you may not need a TTT. It is supposedly the "definitive" diagnosis for POTS, but do you want that or just to feel better? I used to want an answer, a name, a diagnosis, but the longer I go on, the less I care. I just want to feel better than I do now. Jennifer

Thanks! I had read that article a while ago, but could not seem to find it again. That could have had my name inserted all through it; my pulse pressure was routinely less than 18 mm/hg before meds. The first time anyone mentioned the lack of a pulse thing was at a "world class" neurologist's office. He was doing a quick orthostatic and kept groping my wrist in different places before he sheepishly noted that he could not find my pulse. I was there being evaluated for the tremor, so it never went further than a "well you don't have Parkinson's." I am waiting for my time at Vanderbilt like a kid waits for Christmas. I keep dreading/looking forward to it, praying that they will know what is going on. This morning I had a sustained 43 bpm increase in HR from supine to standing till the Inderal kicked in. I keep thinking that Dr. Biaggioni at Vandy will do what so many other docs have done: "there is nothing wrong with you, go home and relax." Or worse, tell me that it's not POTS, but an endocrinological thing that no one can figure out. I appreciate all the positive support on this forum, it helps so much to know that there are others out here with the same symptoms and positive treatments! Jennifer

Hi Jaime, I don't live in San Antonio, but I sure love San Antonio. My husband did some training there for the Air Force and I went with him and just fell in love with the place! Congrats on the medical discharge, they are hard to get! I've had two friends that got them, but they came close to death and through much pain to get there. Welcome back, I hope you are well. Jennifer

Michelle, Be aware with the Klonopin, once you take it for a while, do not just stop--cold turkey. You need to wean off or you might have withdrawal. I have to come off of it before my appointment at Vanderbilt, and my Primary doc has tailored a weaning schedule (6 weeks) so that there are no side effects. I am NOT saying this to scare you off the drugs, Klonopin and Inderal have been miracles for me! I find that the Inderal works on the heart rate and the Klonopin works on the other ANS stuff. My endo did a catecholamine test on me, before I started all this, but I am not sure he followed proper protocol. Any of your docs should be able to do that, it is a fairly quick test. It depends on whether you want to relieve your symptoms or get more information as to why you have them. Good luck! and feel better! Jennifer

Good News Michelle! I am so glad you had a good trip! My neuro prescribed Klonopin for me, but it has not affected my HR or BP. I am taking a tiny dose though, just .5mg a day split into two doses. It helps the headache, he was hoping it would help the tremor; Inderal helps the tremor, but does nothing for the headache. He also told me to use Klonopin 30 minutes before exercise to "pre-treat" the swelling and numbness that occurs in my hands and feet. I am glad you found a supportive Doc! Jennifer

Hi again, I guess I have not been as clear as I thought, sorry. THe doctor's office is attempting to confirm "officially" the readings that I have gotten at home before I get to Vandebilt in November ( you know how many of us are melodramatic .) So far, they are completely missing the "surge" in heart rate by taking blood pressure and HR too late after the stand. I am getting 30-54+ bpm increases at the immediately to one minute standing point. They are attempting to wait until my HR stabilizes to take the readings, sometimes a long time, but it won't settle into a regular rhythm if I stand still, it surges. I've had a holter monitor that showed a 52 bpm increase with supine bradycardia and all day tachy. When the nurse sees a HR of 111 on the pulse ox meter, she won't call it that high, because the HR would vary between 98-111, so she averaged it. I know they are trying to be conservative, but none of my Doctors really understand POTS at all, other than the articles I keep bringing them. I downloaded Vanderbilt's protocol again to give them next time so that they won't argue with me on that. The latest nurse actually suggested that I was "just dehydrated" (still don't have a dx on Diabetes Insipidus yet either.) I just want to be accurate, everyone is trying too hard to make me "normal," I'd love to be normal. Jennifer

Please guys, I need to know which numbers they are looking at...Anybody?

Welcome to the wonderful world of endocrinology! I have the symptoms of Diabetes Insipidus, hypogonadism and hypothyroid, but some of my stuff comes back "normal" too. They keep repeating the tests though, and more and more of them are not normal. I'm working on my fourth endo in a row, they just keep referring me to an older, crustier doctor who has supposedly seen more. As my OB/GYN has said, it never hurts to get a second opinion. It is better to be a pest and find that is truly is nothing than to have an addisonian crisis and end up in the ER! Good luck! Jennifer

Tammy, THAT is NOT a POTS thing! That is classic Addison's disease. If your primary has not seen it, then show him/her. If you have an endocrinologist, go and show them. Addison's will cause POTS like symptoms but is treatable. Please get it checked out soon. Jennifer

Hi Y'all, I have had two orthostatic BP measurements at my Doc's office (in an effort to confirm my own 10 pages of BP logs) and both times they were done differently. For Vanderbilt, they want supine (lying down), then upright (standing) after one minute and then upright after three minutes. The nurses have had several problems with this: they can't find my pulse when I stand (unless they go for the neck or stethascope, or unless my finger is in the pulse ox meter) and the pulse won't stabilize for their machine to read, the automatic cuffs just give up during the upright measurements and by the time they go for the manual cuffs the time lapse is too long. To diagnose POTS do they want the "surge" heart rate that occurs on standing, or the "stabilized" rate at one minute? If the HR won't become regular, do they want the range or an average? This last one was uncomfortable, I was freezing while I was laying there, but once I was standing (trying not to sway) I started to sweat as my heart rate climbed and they were looking for a cuff that fit. I'd like to have something "official" to give the nurses and Doctor to follow, how were things done for you all? Jennifer

Hang on, please hang on...our thoughts and prayers are with you. Jennifer

I hope and pray that you never get that again, or that you recover so quickly that you never have to encounter such stupidity again. But if you do try this: "Madam, I would give a great deal to never have to use this tag at all, but it is the lack of compassion and understanding of people like you who make my unseen suffering so much worse. Thank whatever God you hold dear that you do not experience what I do today!" And then walk, limp or stagger off as best you can. None of us would ever choose to live like this. I support you, do as best you can. Jennifer

Michele, I have had numbers just like that too. My cardiologist also said it was normal. Trust the multiple readings more, you will get a fluke occasionally. Just monitor it, and keep a log so that you have evidence if something really wonky keeps coming up. Continue to take it after you stop exercising as well. That is when my BP drops, big time (89/80.) Good luck, it seems like the horse keeps getting higher every time I fall off, reconditioning stinks. Jennifer

Michelle, If this was a court case, I'd already have been convicted on circumstantial evidence: 30+ bpm increase from supine to standing, narrowing of the pulse pressure, excessive heart rate response to exercise (180bpm), frequent grey-outs, fatigue, constant headache, polyuria, tremor, excessive hand and feet sweating.... BUT....I have not had a tilt table test and none of my doctors will make the call and diagnose this as POTS. They are waiting for someone who know what they are looking at to give the "official" dx. I have some other endocrine issues that are complicating things as well: possible diabetes insipidus, possible hypogonadism, anti-thyroid anti-bodies, galactorrhea (still lactating after 9 years.) I've had two MRI's and a CAT scan but no tumor, I'd have been willing to bet money that it was a pituitary tumor before Christmas. My problem is that I believe that I have always had POTS, and the endocrine issues have slowly gotten worse since the birth of my last child six years ago, but the tremor and numbness/tingling, and previous hallucinations (thank GOD I don't have those anymore) are new. I see Dr. Biaggioni at Vanderbilt in November and we are all waiting, and hoping, that all this will be obvious and clear-cut to him. Jennifer

Michelle, You have all the rights to your records. I suggest you go get them, instead of the hospital mailing them. Every scrap of data can be important, so get as much as you can and take it with you. The new cardio will make up his own mind as to your mental stability, but if you had a psychiatric evaluation, bring that too! (The shrink that did my evaluation called the neurologist to make the first appointment, he said he was not about to mess with my brain chemistry when there was obviously something else going on!) Best of luck! Jennifer