How Much More Could Go Wrong With My Body?!?!

[southbel]

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.

[HopeSprings]

I'm still amazed by how much can wrong and in all different body parts! I'm sorry you're having a hard time. Funny thing is I'd be really happy if they found problems in my bloodwork... because that could lead to treatment! Let's hope they'll have some answers for you.

[abbyw]

Hi Southbel,

I just wanted to let you know that I think this is something we all go through. It is a sort of mourning process. We (at least I) were healthy one day, and a total mess the next. I hope you get some answers and something that works for you really soon!

Abby

[southbel]

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.

[yogini]

Wow, that sounds rough. I would ask the dr if it's common to have such a rapid decline in vision so quickly. If you passed a vision test just a month ago, that is really strange. Floaters, blurriness and loss of vision aren't unusual with POTS, but mine come and go. I haven't heard too much about blindness in POTS and not sure about the red rings. Hope you find some help/answers soon.

[E Soskis]

Dysautonomia is a roller coaster ride for sure! I'm sorry you are having all of this - so much in so short of a time - hang in there - take it one day at a time and know you are not alone - we've all been there and will be there again......roller coaster.....

[southbel]

Wow, that sounds rough. I would ask the dr if it's common to have such a rapid decline in vision so quickly. If you passed a vision test just a month ago, that is really strange. Floaters, blurriness and loss of vision aren't unusual with POTS, but mine come and go. I haven't heard too much about blindness in POTS and not sure about the red rings. Hope you find some help/answers soon.

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.

[lifeless]

**

[AllAboutPeace]

Southbel -

I'm sorry that you are going through all of this right now I'm a week away from the one year anniversary of Pots' sudden arrival in my life and when I read your post(s) it brings me right back to those feelings and internal struggles I had when I went from active and "healthy" to completely debilitated. There is definitely a process of grieving that we go through and it is probably as individual as we all are. I know I didn't hit one stage at a time, I was back and forth constantly. Looking back, it seemed like I was juggling with the emotions (denial, acceptance, fear, loss, sadness, resolve that I will figure this out (because that is what I've always done), appreciative for the gifts in my life). I would never hold on to one of them for long because the next one was right behind it. I didn't feel like the same person anymore - my body and the way it was behaving made no sense to me at all - completely foreign, unreliable and unpredictable. Although, I can look back and see what I have learned and gained in that year, it's not a period of time I would want to repeat and I hate that anyone else has to go through it. All I can say is - you are not alone - any feelings that you are having have been felt by others on this forum. So, allow yourself to feel whatever you are feeling and know that your strength (and/or your ability to juggle ) will bring you through it.

My internist also thought I had a brain tumor because of the severity of symptoms, sudden onset and unequal pupils. They did a CT scan and then an MRI when the CT showed something suspicious. It turned out that it was all Pots. Is your Pots doc following that up? It's good that your cardiac tests came back with no issues - even though it feels like it's not even possible to have "normal" tests when our bodies are soo dysfunctional.

[imapumpkin]

So sorry this is happening to you . abby is right, this is something we all go through...why else could go wrong, why is my body doing this to me...when will i have my life back? it really is a grieving process. and its hard to give advice on how to deal with it because often times I feel like its just getting through the next hour, the next morning, the next day. It sounds like you have a group of doctors who have their stuff together (rare because many doctors are clueless when it comes to dysautonomia) and who are actively and quickly working to help identify the problems and find solutions, so that's definitely a positive to hang on to. you are not alone, we all feel like our bodies are failing us.

something that helps me (well, i don't know if it really helps but it's something i do) is to hope tomorrow will be better. i go to bed at night hoping "maybe tomorrow i will feel better. maybe tomorrow will be a good day. maybe tomorrow i will have more energy."

because we have to live for when it will get better. POTS is so all-encompassing that it can feel like its all that we think/feel about and all that defines us. its not, and tomorrow it could be better. my mom always tells me "there's no point in looking for trouble and expecting the worst" and often i get annoyed at stuff like that because i feel so crappy and am constantly worried something else is going to go wrong. but i find myself feeling mentally better when i believe that things are going to get better. good luck i hope that you will be able to drive after all. maybe if things went downhill so fast they can go uphill just as fast?

[southbel]

I really do appreciate all of your kind words. I will admit it, I am struggling right now. I feel so much guilt and sadness and anger - it's something that is not my usual. My normal self is that bit of smart ***, chatty, OCDish, problem solver type who can always laugh no matter what. I keep thinking I'm burdening my husband too much and letting down my daughter. I know they love me and I know they are here to support me but darn it, I was always the organizer of the family. I was the glue - the one that kept all the balls juggling in the air. So, in other words, total type A overachiever. This is hard for me to accept. And darn it, I want to smile more!

I completely lucked into my Cardio. He's fairly new to the area. Before we got him, we went to some pretty unproductive doctors. Lucky for me, my husband was with me at all of my appointments and just was unwilling to accept some of their explanations (and he would say that to them!). He's kind of one of those silent types that has a bit of an impact when he does say something. He's my rock. I love that man. Drives him nuts because the only place I've ever been meek is in an exam room with a doctor - hence the reason he started going with me to the appointments.

Before my Cardio, I had doctors tell me it was anxiety, stress, a virus, 'female' hormones (yes that was the exact term the male doctor used), snoring, and my favorite - a muscle strain (my husband and I are still puzzled at that one!!). They just built a new hospital near our house and my Cardio happened to be on duty one day I went to the ER there for my tachycardia. He was kind, patient, and wanted me to follow up with him. Circumvented my now fired PCP and saw him. He's been coordinating my care since then. So, in some ways, I am lucky. I need to recognize the silver lining when I see it! He tells me all the time that I'm too hard on myself and says every time - don't let anyone ever tell you this is in your head, this is a very real medical condition. I'm sure y'all know, that's such a validating thing to hear!

Ah, I've rambled on here but I just wanted to express my gratitude for your support. I get worried I sound too whiny on here which is so very much the antithesis of my usual self. I have seen some significant improvement from the Toprol I am now taking although I'm not quite there just yet; another silver lining. I know one thing - I am getting doctor fatigue and I have a sea of appointments in the next few weeks. It's going to take a lot of my inner toughness to get through them all. I can say one thing about my Cardio - the man is thorough!

[Chaos]

Southbel- Not to worry...this is a place where you get to ramble and whine because we "get" it here. (Although you didn't sound either rambling or whiny in my opinion.) I was the same way....always on the go, juggling 4 kids and work and all the family stuff. It's really hard to try to accept the HUGE shift in circumstances that occurs with the onset of POTS. My husband was such a huge support. I swear, I was almost convinced I was crazy because of how wacky my symptoms were but he kept telling me it wasn't in my head and we'd keep on searching for answers.

Even before POTS, back in my 30's, I remember having a period of time where my eyes would literally change 1.5 diopters between morning and afternoon. I kept thinking we were having fog come in every afternoon, except we never get fog where I live, and the fog would follow me everywhere I went. LOL When I saw my eye doctor he was totally shocked by the changes. So, I wonder if some of this stuff isn't occurring in small ways for years before we get "blindsided" by the huge onslaught of symptoms all at once.

Hope you get some answers soon. Sending you lots of hugs.