southbel

I did ask about that. I have an astigmatism. Maybe my vision was always this bad and just the fatigue and all has made it harder for my right to compensate. Who knows. I have to go back next week for a visual field test. He's actually worried I have a tumor - that's not a comforting thing to hear by the way. Oh and my husband reminded me I didn't have the 'official' vision test back in July, just a screening which I passed. He said it's a big difference. Endo's office called to just say that (as usual) my tests weren't diagnostic but a bit 'off' and made no sense. They've been this way forever so I'm not too worried about that. But this was the first time I've seen this endo so I guess it confused them greatly. I have to get the bloodwork redone tomorrow. It will show the same thing. So, it seems that it's not so bad after all and I just had a very bad day. I almost do feel grief about everything. It's like one day I'm okay and I can 'handle' dealing with this new diagnosis and other days, I just can't take it. I know it's just a diagnosis on a piece of paper but it's SO much more than that! I can't believe the impact it's had upon my life.

Thank you both. It's just been a bit overwhelming and I'm doing a bit better today. Of course, I get the call us back immediately message from the Endo's office. I call, get voicemail, leave a message and am STILL waiting for that call back. I will never understand how doctor's offices work.

I'm sorry ahead of time because this is a bit of a vent. My cardio diagnosed me with POTS. Okay, started beta blockers that seem to help. Now they're searching for the cause. Cleared of anything cardiac. Good news, right? Well, off to do the rounds of appointments they set me up for. Went to the Endocrinologists today. Very nice. He didn't seem to think I had an endocrinology reason for POTS but decided to go ahead and test my TSH and all those other thyroid tests plus a 24 hour urine. I've had these test multiple times and been fine. Well, got a message, while I was in another appointment, that my bloodwork came back with problems and to call immediately. Of course I didn't get out of my other appointment in time and the office was closed. I guess I'll call them in the morning. So the second appointment (getting doctor fatigue at this point) was with an eye doctor because I've had some blurriness, depth perception issues, floaters, and red rings on my eyes. Turns out that I have almost no depth perception left, have tons of floaters, and now they want to do additional tests on me to check for blind spots because of this exam. I find out my pupils aren't the same size, which apparently causes problems, and the vision in my left eye is so bad it could qualify as legally blind. To make matters worse, they said that I cannot drive with this vision. They're going to try and see if they can get glasses to improve but there's no guarantees. Mind you, I just passed an eye exam one month before all this happened and now I'm so bad that I can't drive?? ARGH! I can't believe this all just started back on August 24th completely and totally out of the blue. I feel like my body is failing me and I am just such a mess. I went from all my tests looking normal to everything looking awful!! I am just so overwhelmed with it all. I have more appointments later this week. I truly dread it because what else will they find wrong??? I want to get my life back and I feel like the life I used to lead and expected to lead is slipping away. I guess I want to know how...how you deal with it all?? I thought I was handling it well but today just kind of put me over the top.

I wonder too and today it's been absolutely brutal. Bone chilling cold. You're likely like me. We don't exactly have houses and clothes made for cold weather around here. That's why I end up doing the tons of layers thing. By the way, I'm from Georgia originally - always will be a Georgia girl even though I'm not living further north in South Carolina.

I have a worse time in the cold. Love the heat but the cold makes me feel like even my bones are frozen. I crank my heat in my house - which causes my family to complain but I am willing to pay the extra money for the heating bill when I'm that cold. When going out and it's cold, I first try and get hot (hot coffee and/or soup always helps best with that) before getting dressed. Then, I dress in lots and lots of layers. I've found that will help versus something heavy. For sleeping and just sitting around the house, I love my fleece lounge pants and then I made a fleece blanket but I did as a double thick blanket (just two pieces of fleeces sewn together). I use one of those on my bed along with a down alternative comforter. That fleece blanket is crazy warm - something about making it layered makes it SO much warmer. Now something not said above; I live in Charleston, SC. Not exactly a frozen tundra here. So, what works for me might not be enough for you if you're further north than I am. It was 50 here today - I wore a down parka. Yes, I get odd looks but darn it - I was cold!

Yeah, I love having those few hours of normality. I know some of my friends and family are mortified that I only get a few hours of normal but they don't get it. Once you've been through months of having NO quality of life, to have even those few hours feels like a godsend.

They tried me on propranolol first and I couldn't tolerate it at all. Made me very anxious, increased my insomnia, and didn't seem to make any difference in my tachycardia. My cardio just put me on atenolol and thus far, I am getting great results. Granted, it only gives me about 5-6 hours per day of feeling normal but that's a huge improvement over where I was before. He has me at a very low dose of only 12.5 mg per day. Thus far, I haven't gotten any of the other side effects I got from the propranolol.

Just an update. My doctor order a Calcium Scoring CT Scan out of concern to how I process calcium. I had a calcium score of zero, which means that I had no calcium in my cardiac arteries. This is very, very good news. I have an appointment with an endocrinologist today as they try and search for the cause of my POTS. I also have a urologist appointment on Friday for my kidney stones. Apparently, I still have that calcium issue (my kidney stones are always pure calcium) but it hasn't caused damage to my heart - so finally - some good news. Apparently, it's just a matter of changing my diet to not eat as much calcium and I should be able to manage this fine. My Cardiologist started me on Toprol 12.5 per day. I have a lot of hope. I take it each night before bed and I have an almost totally normal feeling during the morning. Around noon, I start to degrade quickly and feel very badly but honestly, this is the best I've feel in months, even if just for a few hours. My Cardiologist called me yesterday just to check on me and see how the new medication was working (did I mention how much I like this doctor??). Told him about it and he felt encouraged; said it's just a matter of tweaking now. Before this, I was almost 100% bed ridden due to dizziness, racing heart, nausea, vomiting, etc. To have hours of feeling normal is amazing. I know it's not a cure or perfect but darn it, I'm so excited that I am seeing any improvement at all!

They talked to me all through mine. The nurse said after mine was done that there is some doctors that get 'bored' and like to talk and another that strongly believes that talking affects the test and strictly forbids extra talking. I'm interested to see the answers to this as well.

Mine doesn't look anything like that. It's just a red ring right around my iris with some light generalized redness in the rest of my eye.

YES!!! My right pupil is quite a bit larger than my left right now. I thought it was my imagination but even my husband agreed on it. I've mentioned it to doctors before when I was trying to get a diagnosis and they largely blew it off. I really got to say that talking to y'all on this board is the FIRST time I've felt like 'wow there's other people out there like me'!!

No pain but definitely have light sensitivity. I figured this was all due to my dizziness and focus/depth perception issues I've been having. It's hard to explain but I have to work really, really hard to focus on one point (aka talking to a person and focus on that person). I'll be in the hospital on Monday morning first thing for a bunch of testing <sigh>. I'll go ahead and bring it up then too. Man, I feel like my body is just falling apart!

My husband noticed something really odd in me yesterday. He said I had perfect red rings around my iris in each eye. I've googled it and it seems it's mostly a problem with contact lens wearers. However, I do not wear nor have ever worn contact lenses. I did find a reference to it being an indicator that the eye is starved of oxygen. We've made an appointment with an opthamologist for Tuesday. Has anyone else ever seen this or had this issue?

Dizziness. Right now, I can't even drive because of it. Totally screws with my depth perception and it kind of makes what I see not accurate, if that makes sense. When I am moving in a car, it's even worse! I know there's no way I could drive right now because I can't seem to properly orient myself, if that makes sense. Really, there are so many but without my ability to drive, I feel like such a burden on my poor husband because he has to spend SO much time bringing me to appts, etc when I used to be the one that ran around everywhere taking care of everything. Oh and I really, really miss my memory. I am a total overachiever, type A personality that was always counted on to remember every detail. Now, I'm totally useless in that department.

I was just saying this today to my husband! I was going to ask y'all how you deal with it because it's one of the hardest parts to deal with. This morning I woke up, felt good. Figured it was the new meds I was just put on. Waited a few hours, still felt great and decided to make a trip out to pick out granite with my husband. Did kinda okay there but started to feel a bit dizzy. That should have been my sign. We decided to go to another store. By the time I got there, I knew it was going to get bad so we quickly got back in the car and headed home (the guilt of this all kills me by the way). By the time I got home, full on attack. Dizzy, chest pain, racing heart, just feeling AWFUL. I was feeling SO great this morning too and it literally just turned on like a switch and went from feeling great to absolutely horrible in minutes. How do y'all deal with it?? I am fairly new to this and still struggling to come to terms with it all. I keep thinking that I'll just 'get over it' since mine started so suddenly out of the blue one day.

I was going to ask my Cardiologist about this when I see him next. My pulse pressure varies widely, everything from around 70 to as low as 10 (but I usually get a lot of errors from the BP machine when it's this low so it's hard to capture). I feel symptomatic with both but in different ways. When it's really wide, I have chest pain and tightness, palpitations, and generalized pain (mostly in my leg) even if my heart rate isn't up. When it's very low, I usually am standing, have a very high heart rate, dizziness, and will usually pass out or almost pass out. I usually sit right around 50 though as a 'normal'. I am newly diagnosed and have gotten progressively worse in the last three months so 'normal' is completely relative for me right now. My BP laying down before I got much worse was usually 90/60 to 80/50 with a heart rate of 60. Now it tends to be around 100/50 with a heart rate of 60-70. Standing up, I typically see 120/90 to 130/110 with a heart rate of 130-160. Oh and then there's those odd days where I will have a few hours and everything seems perfectly normal. I really don't understand this disease!!

I've had this happen to be quite a bit too. However, when I stand up, my blood pressure seems to go up significantly along with my heart rate. I have noticed though that my pulse pressure will get lower and lower the longer i stand and think the error is due to the low pulse pressure in my case. When I had my tilt table test, they kept thinking there was something wrong with their machine and spent an inordinate amount of time trying to 'fix' the machine. My cardiologist takes my orthostatics via the manual method because I tend to error out the machines too much. I've seen my pulse pressure get as low as 10 and still be standing, albeit very close to passing out.

Yes, I was surprised how much I really wanted that diagnosis. It was validation that yes, I was genuinely having these symptoms. Interestingly enough, my cardiologist is very into holistic medicine and he thinks anxiety is largely over diagnosed in women. He also said something that really resonated with me. He said when a woman comes in complaining of a symptom, pain, etc, he automatically assumes it's even worse than the woman is saying because in his experience woman are much more stoic patients that tend to downplay their symptoms. Now I get to go through tons and tons of test to try and find an underlying reason before they determine it is idiopathic. It's a pain but to have a doctor that both understands how much this can affect your life and understands both the problem and current treatments is so darn refreshing. He's a new cardiologist to this area and I feel a bit like I hit the jackpot with this guy. One thing I noticed. If I need a referral to another doctor, he calls that doctor personally on the phone because he thinks I have suffered long enough and he wants me to get seen as soon as possible. I almost wanted to both cry and hug him after this appointment. I was starting to lose confidence in the medical community and he really has shown me there are some really GREAT doctors out there!

I want to thank everyone on this board that gave suggestions, offered support, and made me understand this is real thing and not 'just in my head'. Just for a bit of history. I was referred by my cardiologist to an EP to perform a tilt table test. Even though I had a substantial rise in my heart rate during the test, the EP said it was normal because my blood pressure raised significantly as well vice bottoming out. Went back to my cardiologist today. He disagreed with the EP and has diagnosed me with POTS. He has prescribed a long acting beta blocker (name escapes me right now), and suggested increased salt and fluids. He made clear and wanted me to know that this is NOT just in my head and is indeed a genuine medical issue. Just hearing that made me feel so much relief, as I'm sure many of you know. I have multiple tests and appointments next week because there is some concern about the way I process calcium. He's very concerned that I am building up calcium inappropriately in my body (multiple calcium kidney stones,. calcium blockages in arteries, etc). He had me call all my relatives and get a very detailed family history and what I found out was a bit shocking. I have multiple relatives with POTS symptoms. In addition, we have a history of family members dying from massive cardiac arrest due to blockage at very young ages. Thus far, my aunt is the only one that's managed to get diagnosed before having a major heart attack and when they went in there to clean out her arteries, it was pure calcium. Of note, they all had perfectly normal stress tests, echos, EKGs and blood work just like I did. I hope that getting this taken care of, along with the medication, will help my POTS. Right now, I am pretty much housebound because I can't stand for longer than 10 minutes without extreme shortness of breath, dizziness, and nausea.

I thought that was odd too. He said that only really old people need the second part. I've tried to find anything about this on the internet and never saw that as a criteria. I know that lately I've been developing bad reactions to medicines so maybe he just didn't want to deal with it if I had a reaction? We've decided to specifically ask him about possible POTS at our next appointment. My husband and I found an neurologist that specializes in autonomic disorders at MUSC down here but you can only get in to see her with a doctor referral. Maybe I'll just ask for the referral. I know that I really don't want to do a TTT again anytime soon! I have been suffering some major nausea and vomiting since then. The day after was particularly bad.

Once again, I want to thank all of you for your replies. After the test was read normal, I really was starting to think I'm a crazy woman! My husband keeps trying to convince me that I am not and he was the one that encouraged I post my results to all of you. As to the bag of IV fluids, I thought that was odd too. However, I think there's actually a bit of a snafu that caused it. They had me arrive an hour and a half early to do the AM Cortisol blood work. That, of course, only took a few minutes. The nurse went ahead and hooked me all up, strapped me to the table, etc because she thought the doctor could get there early and go ahead and get my test done. Well, I ended up staying on that table for an hour and a half because he couldn't get there early. I figure that's one reason that I got the two bags of IV fluids instead of just the one during the test. Although, it sounds like I shouldn't have had any from the responses here. The other thing my husband and I were thinking is that the doctor said after the test that I am likely dehydrated and unconsciously not drinking enough. I have to say that I pretty much reject this theory because I drink ALL the time. I am always so darn thirsty that I must drink my weight in water and gatorade. If dehydration is the cause of my fainting episodes, then frankly I don't know how I can get more fluid in me. Although, I do want to stress that while the fainting is an issue, it's actually not my primary complaint. It's the dizziness, nausea, headaches, and just plain sick feeling I get just from standing. I had been so puzzled and frustrated until I found the definition and people's stories about POTS. I felt like I was reading my own symptoms! I am supposed to see the doctor again in a week. I think I will ask him specifically about POTS. Shoot, I want to see if he's ever even heard of it because that could be a rationale for how he performed the TTT and why he read it as 'normal'. Then again, perhaps I am just trying to rationalize everything but I do want to see his thoughts on POTS and if it has been excluded as a cause for my issues.

Thank you all so much for this information. I guess I am disappointed because the doctor seemed so sure before I took this test and now I feel like I am back at square one. Some questions though. First, I feel absolutely awful right now; so shaky and tired. Is that normal after the TTT? Second, I was reading about other people's TTT and one thing I wanted to ask on that. They gave me a bag of IV fluid before the test and then hung another during the test. Would that make any difference in my results?

The 24 hour holter monitor is one of the things that led to this test. Well that and my passing out a few times. My PCP had done that and referred me to the Cardio (which got me to this EP) because my 24 hour holter showed drastic changes and one she said was concerning of 49 to 126 heart rate but that my heart rhythm was normal. Every other test shows my heart to be very healthy and function fine (stress test, echo, scan). The only thing that was slightly abnormal was on my stress test. My test was about 4 minutes long because I got such a fast heart rate so quickly. The Cardio said that it was perfectly normal heart but it was just very fast. I like my new PCP. I have an appointment with her next week. I think I will ask her opinion on this and specifically ask about POTS. Thus far, the doctors are all very nice and seem to take my symptoms seriously. It does help they have actually seen some of them in action and the ER got to see one of the passing out episodes. So, it's pretty well documented and perhaps that helps. My only issue is that I'm just not getting any answers as all of my tests keep coming back 'normal'. From what I'm seeing, perhaps my TTT wasn't normal after all. Interesting.

Yes, I think that's where I'm confused. When I read the criteria for POTS, it seems like I meet it pretty well. The only oddity for me is that my blood pressure rises quite a bit and I notice a lot of people that post on the board have blood pressure that drops and causes them to pass out. Don't know why I pass out on occasion. Do not know why my blood pressure seems to have different reactions and is not predictable. I am used to a really low blood pressure but this bit where it rises quite a bit while standing is new. I was further confused when the doctor said that my increased heart rate was completely normal because everything I have read seems to disagree with this position. Is POTS really that rare that my doctor would not know about it? Because I found out about it pretty easily with just a google search of my symptoms.

I posted a new topic that details out my TTT and the 'results'. It wasn't that bad - not fun but really the anticipation was worse than the actual test.