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New And In The Middle Of Dx And Kinda Scared

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Where to start... maybe with my daughter. About two years ago my daughters(age 15 now) Dr. heard a murmur and sent her to a ped Cardiologist. She has been having issues with rapid heart rate, dizzy spells and stomach aches. Long story short we found out through and Echo that she had an innocent heart murmur but that her vegus (spelling? ) vein was pinched when she lays down and when she gets up all her blood rushes back through her causing her to be dizzy. Her Dr. never named what it was called but said it was something she would "outgrow" and might come back as she is elderly. His prescription : drink a Gatorade a day and get salt in her. She still battles this (had to drop basketball due to rapid heart rate, almost passing out, heat exhastion etc., she has passed out once which prompted a trip to the Dr. because he hit her head on an oxygen tank of all things ) to this day and we really have no answers but she does know what to avoid.

As for me.. First I should say I have menieres (mainly have issues with hearing loss- replaced by low tones and extreme vertigo-throwing up) however as of now they have found no nerve damage and while its disabling at times I have learned to live with it and still work- live- and push through spells. I do not take the diuretics that they usually have someone take with meneires- I am not a big "medication" person. I also have Von Willebrands and only require factor when I have surgery or have an extreme accident that Stimate will not work for. My son has Severe Von willebrands and required factor more frequently. I know it sounds like my hands are full but I still consider myself healthy and my son healthy, he just has big "mountains" to climb every once and a while...

Over the last year I have been having some problems that have become more frequent in nature and quite scary...making life stand still for me.

I thought it had something to do with my ear(s) so I ignored it in the beginning ( I refuse to have a condition dictate my life) but it became harder for me to handle. My Ent sent me to a Neurologist this last Wednesday (all within the University) thinking I had migraine problems. The Neurologist looked me over took my blood pressure and heart rate laying down, sitting then standing and my blood pressure dropped while my heart rate sped up, hands were sweaty and he said based on my numbers I should have been passing out (I felt "off" and everything echoed but I never passed out).

So he sent me to Cardiology for a work up of POTS. The Cardiologist I saw yesterday did the same test but my numbers did not do the same thing as at Neuro. however a "blurb" as he called it came up on the EKG. So, I am being scheduled for a Tilt test and and echocardiogram with IV looking for some atrial something or other defect.

I dont know what is going on with me but I am tired of feeling like I am spacey.

My symptoms are; the biggest is dizziness to the point where others think I am drunk - luckily this has been seen by my kiddo's doctors who know me and know its not normal for me and they are the ones that talked me into seeing my ENT ( my vertigo is not the same as the dizziness - it feels entirely different). I have fallen down 4 times in the last month and its not due to vertigo. I always feel like I am in a tunnel, everything feels so slow. My memory is not the same, I forget where I park, what I say , simple instructions, etc. My blood pressure is low- it used to be borderline high , I get worse in the heat- to the point where I even will have fevers that I can break by taking a cold shower. The heat makes me dizzy body feels like jello and my ankles and fingers swell up. Elevations changes (mainly coming down) make my symtoms worse (though this could be the meneires). If I lie down my brain starts to clear up and I dont feel like I am in a fog, soon as I rise I am "drunk" like. Its horrible. I cant function... and for me its frusterating as I am a fighter. I have always taught my son even that he may have a medical condition however that condition does not own him. This is how I feel about myself too, and whatever is happening is owning me. I am worried, scared and feel helpless as I cant figure out how to " correct " this although I do not know what "this" is.

I may or may not have POTS..heck it may not even be anything to do with Cardio.. maybe its just my ears getting worse... but I am here, in your forum for right now until I know what is going on. I feel like I need support as I am not sharing what is going on with my family other than my husband and of course my kids know as they see first hand what is going on. I do not want my other family , friends worrying over something that may not be. Does that make sense? It just feels lonely not having anyone to really talk to about it.

I was not really afraid until yesterday's cardio appt when he said he heard a blurb..

My mother died at age 58 from Congestive Heart failure..

Her father died at age 40 from a massive heart attack ( this was in the 60's so technology was not as it is now so no one really has information as to why he had a heart attack)...

So now I sit here adding more stress than I probably need and may not be warranted because I now have fear about family history- something I honestly really never sat around and thought about.

(sorry.. for rambling on and on.. but I guess getting all my tears out and worry is what I best for me right now).

Thank you if you read this far.

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Welcome, and pour all of your questions and concerns out here! Everyone here will chime in with support and offer help.

I would like to mention something I just ran into the other day:


It talks about a possible link between middle ear problems and orthostatic issues. I have had some kind of middle ear issue in my left ear for about 13 years and am now wondering if it could have brought on POTS four years ago for me. I guess I'll have to make an appt. with another specialist!

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You should cry all you want - you're among friends. You can schedule heroics for another day.

You've been coping with your identified medical condition over a long period of time, and helping your son to cope with his - to have something else appear must feel as though it is all too much.

I know how distressing and isolating it is to live with debilitating symptoms and to not know the cause - I'm really glad to hear that you're undergoing investigations that will help you and your doctors to get to the bottom of it.

Please let us know how you go with your upcoming tilt-test.

With best wishes


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Hang in there - you are in a caring community here......... How is that you have come to fall down 4 times recently & it is not due to vertigo or dizziness? That is truly alarming to me and I would hope the doctors would take that very seriously -- you don't want to be adding injury to yourself or others in addition to the puzzling picture thus far....... Glad you are able to see the specialists you need to see ~ it sounds as if you are in capable hands as they are getting right to some in depth diagnostic testing to help you get a clearer picture of what the nature of these debilitating symptoms are about. If possible at all do do your best at relaxation and destressing in ways that have proven effective for you.......you are a strong intelligent person having a tough time of it lately -- this will pass - nothing stays the same that's for sure......... No matter what the results of your testing are it's good news -- good if they find something in clear cut explanation and good if they find nothing serious at all..........if it's something they will help treat it and help you to cope -- if nothing is found serious you can check off all the litany of fears you had as now being unwarranted and you can again seek ways to best cope ... You have found again - a great group of people for support. Best Wishes!

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  • 2 weeks later...

Sue1234, Diane, Now what and thankful.... thank you so much for your support. When you are in the middle of piecing a puzzle together it gets a bit overwhelming.

Update: With my daughter she is being reevaluated with the cardiologist and they are now saying Neruocardiogenic Syncope.

Update with me: Numerous tests this week. My thyroid and B12 are normal. MRA- normal , Tilt test started out hard as my veins kept collapsing (they said that is usually seen with those having POTS or Syncope- something to do with the nervous system) but my tilt test was came out fine. Cardiologist said that he expected based on my BP/ Heart rate seen in Neuro and Cardio and the preping for test that it would be abnormal. He said he is not ruling it out yet. My echocardiogram - the bubble test was normal (looking for hole I think). However the heart muscle itself is doing something strange that he cant put his finger on..warranting other tests. When your heart beats the muscle squeezes then relaxes then of course repeats. My heart muscle is not relaxing all the way. I will wear a heart monitor for 3 weeks. My blood pressure is all over the place (mainly low) todays was 112/58 manual. Mondays was 98/62manual. Tilt test the high was 123/78 taken by machine.

I cant help but wonder now...about a year ago I had surgery which prompted me to have factor (humate P) every 12 hours for 5 days. There is an elevated risk for infections to cross through blood product among other things. :blink: I cant help to wonder if somehow I got an infection passed and maybe thats what is going on~ this was a rough year of sickness (for everyone I know)

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As annoying as it may be, I would also suggest you see an endocrinologist. Other endocrine illnesses can create symptoms that look like POTS and cause heart issues. Get the full once over and then you'll know. Welcome to our orthostatic extended family! I pray it is something simple and treatable, even if it is rare, may it be known!

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The problem with endos and their "once over" is that they really have no idea what they are doing when it comes to endocrine disorders. Endos are really only good at diabetes. From all the stories I have read online and have heard first hand, they miss textbook cases of real endocrine problems ALL the time. You literally have to be on your deathbed for them to take you seriously. A lot of them have been trained to think if you are up and walking, that you can't have an endocrine disorder.

Also remember that "normal" test results don't mean optimal. A B12 level below 300 needs further investigated without a doubt. Urine MMA is a better test for B12 levels. TSH is a poor indicator of thyroid function as it means nothing if you have a problem with your hypothalamus or pituitary. You need to get the actual thyroid levels checked-- FT3, FT4, T3 and T4.

Get copies of your lab work and start doing your own investigative work. That's the only way I've come as far as I have.

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Thanks for the information Firewalker and Dana. I have not gone to an Endo although my Hematologist does order the test (forgot offhand what its called) to see my average blood sugar every 6 months. My mother and all her siblings had/have adult onset diabetes. That said, I did have some tests done recently to check levels and they always do routine ANA etc.. I am not sure if that is what you are talking about? I too pray its something simple and not expensive to treat or has an easy fix. We are actually canceling a vacation trip because I cant get through the day without dizziness or dropping things etc. and the heat is not helping at all. Pretty sad when it comes down to that and breaking kids hearts :P .

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No matter how simple you think the test is, always ask to get copies of your labs with the lab ranges. Google is absolutely amazing when it comes to information on regularly run tests. Results can be blatantly out of range and they will say "it's good" or "good so far". I've had this told me to over and over again especially when it comes to thyroid, B12, electrolytes and complete blood counts. As for your thyroid being "normal" unless you are seeing a natural doctor, I can guarantee the doctor only tested your TSH which is a pituitary hormone NOT a thyroid hormone. You need to get your actual thyroid hormone levels checked, which can be a rather difficult endeavor with a PCP or endo.

You need to get all of your records and start looking stuff up on your own. I'm just trying to save you from running around in circles for years and years.

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Hi Again....

The test you were referring to about your blood sugar is the blood test called the Hemoglobin A1C - reflecting 3 months avg. blood sugar.........It will give a number within a range -- if you are over 6.0 most labs will consider that a bit high...Some labs will then calculate what they estimate your average blood sugar was in the last 3 months. So if I'm a 6.1 -- My average might be calculated to be 128.......not terribly high -- but enough to keep an eye on as it's looking pre-diabetic. Then the doc can check it again in another 3 mos., 6 mos. or most often a year if it's okay (say less than 5.8).

I would agree it's a pain but good advice to get yourself a nice big 3 ring binder. Put tabs in it. One tab for MRI's, one for bloodwork, one for X-rays, one for consult notes, one for physical therapist notes, one for CT scans, another for EMG's........you get the idea.

Then after your appt.s at varying or various clinics call and make sure you get sent a copy of the doctors note. If your labs are at one hospital or lab - request a copy of them. Get it all together - it takes a bit of effort - but in the long run it can be helpful for you and for your caregivers. Especially nice and organized for complicated cases as we tend to be.

Hang in there -- diligence and persistence can help alot -- but only if it's mixed with plenty of time for you to be kind and understanding to yourself -- bringing distractions of the healthy kind in as you are able....a walk, a movie, a book, a game with the kids...........or just a blessed nap. Whatever it is let it remind you of how lovely and special you are - though under the weather as of late to be sure......... Maybe a bouquet of flowers or a favorite cup of tea or a nice bath.........something to pull you up and out of this just a wee bit........it's happening TO you.....but it isn't you....... May they sooner rather than later get to the root cause of your symptoms and some relief come soon I pray...

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