bebe127

Naomi,

Yes, been to an ENT and like most of my other dr. appts....there is nothing, I'm perfectly fine! I agree too that it is the least of my complaints. Just wondering if anyone else deals with it, and now I know that yet again, I am not alone Good to know!!

Thanks Kelly

I have had my ears checked and nothing seems out of the ordinary. I also have experienced trouble hearing (my kids think I'm deaf) and at times have to resort to lip reading which can be kind of awkward depending on who I'm speaking with! My kids always think they are clever when they cover their lips while speaking to me. Oh, the joys of motherhood! Over the years, I've complained of this and no one can ever figure it out. Guess I just have to chalk it up to one more symptom that I can't control.

I am now in the habit of watching Netflix at night until I can't keep my eyes open any longer and sometimes I fall asleep only to wake up and find that I'm laying on my nook I can't just lay there and go to sleep with all the crickets in my head because I end up just clenching and unclenching my jaws (this changes the pitch) to the tune of various songs and it keeps me awake!! I should look into a noise maker, for lack of a better term, to get to sleep at night, but that just might have to wait until the series I'm watching on Netflix is over

Anyone have this??? Ringing in the ears. I think I've had this for quite some time, although over the last three years it's gotten worse. I've read about it a bit and how one can have this because of bp. I'm wondering if it's the bp or if it can be a side effect from meds or what. It drives me crazy, especially at night when all is quiet, hence my intimate relationship with netflix on my nook! Any ideas??

Thanks pumkin,

I think I'll just stick to the trace blood and leave it at that! I don't want the fun scope, my dad has had to have this multiple times...not fun at all!!

boymommy3,

So sorry you are feeling this way! I too, am having one of those days/weeks/months...Can I hide with you? I homeschool too, although I only have two and they are teens and fairly self sufficient. I still work with them, though from my bed these days.

I'm not sure if we can post book recommendations, but here goes:

One of my "go-to" books for inspiration, encouragement and a boost in faith is, "Jesus Today" by Sarah Young. She lives in Australia and has/had Lyme with related chronic illness, so she knows where we are coming from. So many times I open her book and it's like I was lead to that particular reading. Does it cure my POTS, no, but it does put me in a better, more positive state of mind and I can feel the peace as it comes.

Another book I've been reading is, "Coping With Chronic Illness" by H. Norman Wright & Lynn Ellis. It is written from a Christian perspective and has been a tremendous help to me.

After all, we may feel helpless at times, but we shall never be hopeless

I hope that you get to feeling better soon. Remember, you are not alone; that's what is so great about these sites. We can vent, commiserate, share victories, and encourage others while getting encouraged ourselves.

Blessings to you and yours

MomtoG, A UTI for four years?? Yes, I too, have heard that one can have a low level infection without signs. My mother, may she rest in peace, had infections all the time that never showed on anything.

ophelialit, Interesting about the MCAD. I've been reading a lot about this and am concerned. I'm going to take some literature into the dr. next time I go and ask about it. What type of dr. should one see regarding MCAD?

Thanks guys

My dr. might have said something about a uti, but I had no other issues ie: burning, etc. and bloodwork showed no infection. Weird!! I try to stay away from googling too as most of the time all it does is raise my bp and makes me more worried. I will ask again when I go to dr. Would love to know if there is a connection somehow. BTW, this started the year before I was dx. I went in for tachy and they took blood, that was the first time I was told about the trace blood. Nurse said it probably had something to do with my cycle. However, I don't have a cycle anymore as I have an IUD (sorry if TMI). Anywho, I hate it when dr.s just don't seem as concerned as we are about these things. It's like...don't know...don't want to find out...deal with it. UGH! I am of the thinking that there is a reason for everything and usually there is a root cause, I just wish dr.s would take the time to find out instead of just treating the symptoms and/or ignoring it altogether.

Alright, I'll get off my soapbox!

I'm with you...any ideas guys???

Hope you are well

For the last four years, my urine tests have come back with trace blood. Dr. doesn't seem too concerned. He did have me go in for x-rays/sonogram on my kidneys and bladder over a year ago (tests didn't reveal anything abnormal), but that was because my father has/had bladder cancer. Still have trace blood in urine. Will be getting yearly physical in a few months and I am anticipating the whole trace blood thing.

Anyone else have this? Like I said, dr. doesn't seem too concerned, but I'm fairly certain that most people don't go around with trace blood in their urine for no apparent reason! Not sure if I should be concerned or not, although I'm putting on here, so I guess I am a bit concerned.

Thanks for any insight.

k&ajsmom,

I am right there with you unfortunately. I am having a "pity party" kinda day/week/month myself. I too want my old life back. I guess the saying "you don't know what you've got until it is gone" is so true for many of us; I know it is for me. I've had such a rough go of it for the last month. It is all I can do to get up in the am and get going when all I want to do is stay in bed all day and not be bothered.

I toy around with the idea of seeing a new dr., but it's such a hard decision to make. Do I go with a positive attitude that he will be able to help me only to be totally deflated when he says there is nothing he can do as this is the way most of my dr. appt.s end up like??? I so need to try to cling to the hope that I have through my faith, but it is so hard on days like this. I usually try to be so encouraging, and I want to be, but today is just not one of those days.

I'm so tired of living in a constant state of fear. Noticing every little bodily change. Wondering, wondering wondering if this will ever go away, or if this is just my lot in life and I need to get off my pity pot and be thankful it's not something worse? UGH, I hate this life with POTS!

It makes it that much harder to bear when others aren't so understanding. My husband is lovely and supportive, but I know that he gets frustrated, not with me per se, just in the fact that he can't "fix" me. I want to be "fixed". I want to feel normal again. I want to find joy and have joy. I want rest and peace.

Most of the time I try to busy myself so that I can try to forget I am sick. Sometimes it works and other times it doesn't. Today is one of those days that it is not helping. Someone PLEASE let me off this ride!!!

Sorry to rant on top of your rant. I do think that sometimes we do have to be a bit selfish and not take crap from anyone. Sometimes we just need those moments to ourselves, to grieve, to be angry, to be depressed, as long as we don't stay there too long.

I need to remember my own mantra: I may at times feel helpless, but I am never hopeless. I cling to the promises of God. May you be blessed today

Abbyw,

I rarely have a "good day". I really don't know what my normal resting hr is, before POTS, I never even gave bp or hr a second thought. If I had to guess, I would probably say in the low 70's and gets lower when I sleep. Unfortunately, it doesn't matter if my hr is in the lower 70's or the 140's, I still feel bad. Not much help here, sorry.

Hope you feel better

Hubby has Gerd as well as Barret's Syndrome and is on Omeprazole w/bicarbonate extended release. He definately knows when he's missed a dose. He takes 40mg. 1x daily.

Thanks so much Leigh8!! I thought there was a site for kids affiliated with Dinet.org. I have a friend who's daughter was diagnosed with Dysautonomia (she was also born with 3rd degree heart block) and this will help her tremendously, I hope

I thought I had seen a site that was called Dinet Kids. Am I wrong? If not could someone give the link?

Thanks,

Bebe

Thanks pumpkin

Thanks Sarah,

Praying is my first go-to! I just get so sick and tired of being sick and tired and having my family have to deal with it all too; It's just not fair to them.

Praying for you and thinking about you often. Hope things are well with you

Bebe

Sarah, Altruism and boymommy3,

Just got another one this morning. It wakes me out of a sound sleep. I guess the best I can describe it is tremulousness. I feel like my insides are shakey, going a mile a minute, but my hr is fine. It's like some thing is vibrating on the inside, all over, like I can feel the blood rushing all throughout my body. It's just weird and I don't like waking up like this. It passes within a few seconds. I just don't get it, and I too, Altruism am so done with this!!

I too have had changes over the years. I began with high blood pressure, now it is on the lower side. I have other changes too, but the list is too long. Mine are kind of like yours although I started out with high bp. Don't know if the changes are from meds or I'm just getting used to them and don't notice that much anymore. I also have some new symptoms like, rushes in the early morning, pains out of nowhere, more chest pain, vision issues, night sweats and more. Still, I don't know if these are due to meds or what.

I created a table on my computer listing all of my symptoms and catagorized them by frequency ie: always (daily), frequently (5-6x/week), sometimes (2-3x/week), rarely (1-2x/month) and never/don't know. My goal is to review this list each month and make changes as necessary although keeping original copy so as to compare. My hope is to be able to take this into the dr. for some type of evaluation or at the very least he can see progression/regression.

From what I've read here and elsewhere, symptoms seem to wax and wane. Hope you get some answers soon.

Bebe

joyagh,

I will ask my GP or new EP (whichever appt. comes first) about an endocrinologist. I also don't know what type of POTS I have. No dr. has ever suggested there is more than one type, nor have they suggested finding out what type I have, how I may have gotten it, if it will go away or any other tests to rule anything else out. The only way I know about some of the different types is from this forum. I only know about Dinet.org because my dx. dr. gave me printouts from the site the day of my TTT and dx.

Sometimes, I just want to go see a new dr. and not show them anything, just explain what's going on and have them take it from there. I always go to the dr., especially a new one with all my records and test results. They usually glance over them and concur with the dx dr. and that's it. My GP has suggested some type of heart mapping (not sure what it is called) and referred me to a cardio. I emailed the cardio asking if he treated patients with POTS. His response: "My experience with this is limited. [Your dx dr.] likely has seen more cases than myself. This is a rare condition and as such we see little of it. I think with [dx dr.] you are in good hands." What this cardio didn't know apparently was that the dx. dr. only diagnoses, he does not treat, nor does he know of any dr.s that do treat this illness.

I couldn't agree more Allomenteer!

These morning episodes are happening while I'm sleeping. I'm not anxious or worried, I'm too busy trying to sleep. They just come out of nowhere and I can't recall experiencing this previously.

What I just experienced when taking my daughter has more (I think) to do with my worrying thoughts of "oh, my, I have to take daughter and I don't feel good, hope I don't pass out, or hurl or both". Plus it is a different feeling than my morning wake ups. I wish it wasn't so hard to explain.

Thanks everyone for your responses. It's so hard to explain how I feel. The episodes haven't been happening as much over the last couple of days. When it does happen, it wakes me up out of the blue at around 6am. I feel tremulous (I guess) then I feel scared. I'm not sweating though, my hr seems fine and there really isn't anything else to it. I checked my bp one morning and it was normal.

I've always been an anxious person, not spastic mind you, just nervous. Since my dx with POTS, my anxiety is through the roof. I just had to take my dd to volunteering (she drives there, I drive home and my son rides along as I no longer drive alone) and I was totally freaking out (on the inside) and my eyes were acting all funky and I was feeling really crappy. I just kept praying that we'd get there and back safely. When I got home I took my vitals: BP 118/84 hr 106. BP is normal for me, hr was a bit elavated. Now I'm lying here typing this and trying to relax.

abbyw, love your explanation! That is exactly how I feel.

Hopefully, in the spring, I am going to see a new EP that supposedly knows about Dysautonomia. Hopefully, I can get some answers and/or better protocol for medications. I hate feeling like this and I hate being sick!

I want off this ride now!!

I don't know where it is going. I would definately ask your dr. next time you see him/her. I have heard that it is not too good to be taking it in and not getting it out, that water can actually dilute some essentials, ie: electrolytes and such and cause issues. Are you drinking just water, or are you also drinking things with sodium like Gatorade or chicken broth? I know for me, I probably don't get enough fluids throughout the day, but I pee quite often. When/if we go out, the first thing I have to do upon arrival is find a bathroom, even if it is a ten minute drive and I just went before leaving the house. I don't know if I've ever been dehydrated, but my mom always told me to check the color of the urine and I do. The darker the color, the more dehydrated you can be. Hope you find some answers.

Thanks pianoman and Katybug! I know life just happens and I have to attempt to go with it, it's just so hard sometimes. Dealing with this for 3+ years (I know many have dealt with it so much longer) takes its toll some days. I guess I'm just sick and tired of being sick and tired.

Katybug, that is awesome advice! Sometimes we are our own worst enemy. I need to go over the Serenity Prayer!! And I do need to forgive myself and give myself permission to have bad days and I also need to try to look ahead at the beautiful day that dawns after a storm. Thanks for the reminder.

Be blessed!

Bebe

Thank you Corina, I will check out the newsletters

How does one find out their norepinephrine levels? Is this done by blood? I'm so confused! It doesn't help that I still (after 3+ years) have yet to find any doctors in my area with an iota of information about POTS other than what this website has to offer, of which I am so grateful for!! I just get frustrated because I still have no idea as to the 5 w's of my condition.

Do you all research on your own, print any info and take it into your Dr.? Does he/she actually read it??

How does one actually get diagnosed with Hyper POTS. I've been to two EP's and neither suggested this or suggested further testing. I am currently getting treated by my GP that has a few other patients with POTS, but is certainly no specialist. I will hopefully be going to a new EP in the spring. Do I ask him about this and what testing needs to be done, or do I have to go to a place like Mayo or Vandy (which would probably not be a likely senario for me)?