Hi everyone

[Urkittenme]

Just felt like giving an update...Managed to weasel myself into the only cardiologist office that would make me an appointment, 45 min away, month wait. There's been no communication from my primary since I turned in the 30 day monitor, but she was getting the reports "almost instantly" according to a lady from the life alert company that watched the monitor when I pressed. Not too worried I guess. Apparently the cardiologist wasn't too happy I didn't have a referral, because he came in with a coffee and came in got super comfortable in his chair and took a sip before even acknowledging me, like he was expecting a problem. "So....what seems to be the issue?" I give a general summary and explain I would just like an echo to make sure everything looks okay "Ok.........and so..what are your symptoms?" I list, but am already fully aware that he is completely uninterested. Takes my pulse sitting after I mention pots and he said "your pulse is fine right now, so.." oh and, "well have you tried increasing salt and fluids?" I have. "Yeah. So. For people with these symptoms I usually go ahead and treat with midrodine" I explained that I was trying to get pregnant and he ignored me entirely. Asked if my blood pressure is usually normal (it was a little high), I showed him pics of my BP cuff where it raises when I stand. He prescribed medication and scheduled me for an echo sometime in july but made it absolutely clear he thinks nothing is wrong with me and nothing will show up & I'm wasting his time. Cool! I'm done trying to get people to understand. I'll take my echo that took so many months to get scheduled and then I'll stop trying to get help. Just manage on my own. Next up is trying to figure out why I can't get pregnant. The localized stomach pain on both sides and horrible acne I've been getting on my jaw and chin makes me think it's pcos. Top it off I just got over pink eye, and I've developed dyshidrotic eczema, not too long before I got a gnarly steam burn covering 3 fingers that is just now peeling away. Life.

[MomtoGiuliana]

So sorry you were dismissed by this doctor.  Would be nice for such doctors to spend a little time in our bodies to understand why we pursue a diagnosis and treatment!

Some cardiologists still don't seem to understand the significance of POTS in terms of how disabling it can be.  And also all the medication options available.  Midrodine is generally used in patients with low blood pressure from what I understand.  It has been used by patients during pregnancy (who use this forum).  you may want to see a high risk ob/gyn who would be knowledgeable about the risks and benefits of meds with pregnancy.

Hope you feel better soon.

[Urkittenme]

@MomtoGiuliana thanks a lot. From what I understand a reproductive endocrinologist might be my best bet. There's one in Sacramento at uc Davis. It's far, but hopefully he is accepting new patients. My s.o is completely against me taking any kind of medication that regulates my heart even without being pregnant. Of course according to him, he just thinks "everybody runs differently". Starting to think there's no white light for me. 

[BuffRockChick]

Hunny, it's your body.  Your SO doesn't get an opinion about your medical care and your body!  I know it's only one sentence, but statements like that raise my hair.  What's his goal, to keep you disabled?  Are you safe?  Is there coercive control going on?  (I don't need to know, but think about it and make sure you really are safe.)

I'm sorry you had that experience and are feeling unwell.  Statistically, POTS is likely to improve over time, so don't give up!

RE: PCOS and TTC, I completely understand that heartache!  However, miracles happen, when you least expect them.  Took 6 years to conceive my first and 8 years to conceive my second.  

Many (((hugs)))

[Urkittenme]

@BuffRockChick thanks for your concern love. I understand where he is coming from but he can be hard headed about a lot of things and when it comes to my heart he doesn't want to believe anything is wrong. It is stressful for him too but I think we will both feel better if nothing is wrong with the echo. He doesn't know yet about the pcos. I think that would be too much for him to handle and I'm trying to deal with it on my own.  I know he will find out eventually. So glad you were able to get pregnant. Gosh that is such a long time to wait. My dad recently started pressuring me about grandkids because his health is in decline, and even he doesn't believe anything is wrong with me. He told me that the power of thought is a powerful thing. So I guess I'll just wish myself well then! Good talk dad. But thank you, I appreciate your response.

[BuffRockChick]

My hubby is hard-headed too!  OMG, he's probably the only person on the planet more stubborn than I am!  He's in denial in a different way.  He thinks I'm just a crabby, negative, irritable, dramatic, attention-seeking, self-centered, lazy person.  OMG.  I'm hoping getting preliminary POTS diagnosis by neurologist will help.  He'll come 'round if he sees the data, he has graduate degree in medical field.  I was misdiagnosed with psychiatric conditions before we met.  It took him time to adjust to ADHD, not bipolar disorder.  Next up is POTS, not borderline personality disorder (fast mood changes, irritability).

Don't mind that doctor's attitude - a clean EKG is not "no news", negative test results are meaningful!  He's right that if you have a typical presentation of POTS it will come back as normal.   But....  what IF you don't have a typical presentation and you also have a cardiac condition?!  See, value.  I'm glad you got the referral and I hope it your results are normal!

My doctor was shocked that I said I wasn't pursuing medication for POTS because we are trying to conceive.  Well, maybe not.  I was on bedrest with both pregnancies and had worse POTS after.  REALLY, REALLY BAD after my first when I had a more strict bedrest.  I didn't have easy pregnancies!  Maybe adding POTS into the mix my hubby would be more open to adoption?  He said yes to adoption but now says no.  I had a very early miscarriage 2 cycles ago and my POTS symptoms flared up.  Part of me is like "YOU FREAKING OVULATED TWO CYCLES IN A ROW, THIS MIGHT BE ONLY CHANCE, KEEP TTC!" And the rest of me is like "no."

When I went to my OB about fertility, he said the first thing to figure out was whether or not I was ovulating.  He recommended using ovulation predictor tests.  There are two kinds, the urine dips and the saliva ferning test that is reusable.  Maybe figuring out your ovulation status would help?

Many (((hugs))) and baby dust to you.

[MomtoGiuliana]

I have to second the comments above.  Medication should be a decision between you and a doctor--the goal is for you to be well!  That said, many of us are challenged by having family members who have a hard time accepting our condition, or the limitations it causes.

Keep in mind too that many people diagnosed with POTS improve over time.  You might not need to take meds for the rest of your life.

[Urkittenme]

Thank you both.

@BuffRockChick I know exactly what you mean about the diagnosis and getting him to understand. That's why, we'll that's one reason why, I wish a doctor would take me seriously. He tends to listen when it's "someone who knows what they're talking about" *eye roll* I've been called lazy too! What a smack in the face that feels like! And I think he has come to know the crabby irritable me as who I am. I pretty much have, too, at this point. 

I have had 1 ekg done while I was having an episode of SVT. It took me a while to realize that's what happened because I didn't understand why my heart was going at 112 while laying down but I've finally put the pieces together. My parents both had heart attacks early and my brother and mom both have Right Bundle Branch Block. That also showed up on the 1st ekg but I have yet to aquire my records for the 2 others. Both docs said those were "fine", but so did the lady about the 1st ekg. I am fairly confident that eds3 is the root of all my evil. So it is very important to me to make sure all those valves are doing their thing in there. 

I'm so sorry to hear about your recent miscarriage. And thank you so much for the advice about the ovulation test that is a brilliant idea! I'm definitely going to do that and take the info in with me to the doc. Appreciate all your kind words!!!

[BuffRockChick]

The thought of SVT definitely scares me, and wow, with family history of heart problems I'm glad you fought for your EKG!

My hubby referred to POTS by name today in conversation!  Woot! Feeling hopeful!

I wonder if you can prep for appointments for better results?  I read a blog post by a woman with dysautonomia about prep for appointments.  I tried her advice.  I collected data in advance (which was good because I initially thought I had blood glucose problems but that was totally wrong).  I wrote out my history and symptoms so it would be in my chart right.  And I use medical terminology whenever it's accurate and appropriate.  I make a display of knowing a bit more than I actually understand so I get more detailed information from doctors.  If I think it's going to go over my head, I bring my hubby with because he will understand the biology and medical stuff and ask better questions than I would.  I think I got stuck with psychiatric misdiagnoses in the past because I didn't understand what caused symptoms or made them better, I didn't understand how symptoms were related, and I didn't do a good job explaining them. There are some good websites about "how to talk to your doctor" that might help you.

[Urkittenme]

@BuffRockChick that's great that you're making headway with you husband, I hope your appointment goes well!! It'd be just my luck to bring along my s.o and have the doctor tell me that nothing is wrong. He'd be like, "see? You're fine. Chill out." You're right I need to find a better way to talk to doctors. I often get flustered in those type of situations. It doesn't help one bit that I get worn out by talking and have to take big breaths in the middle of my sentances. I usually bring a list to hand them when they ask for symptoms. The ovulation test will be a great prep for my next appointment, wish me luck that UC davis reproductive endocrinology accepts my self-referral! If not it's back to the clinic for me.

[BuffRockChick]

Bwahahahahahaha!  Yeah, that would suck for our SO's to hear that from a doctor!

I get adrenaline during appointments and can't think straight and look/sound anxious.  My word retrieval is below average normally, and then I can't express myself clearly.  Hence, fighting against psychiatric misdiagnoses.