• Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About BuffRockChick

  • Rank
    Advanced Member
  1. I'm fighting against 13 years of psychiatric [mis]diagnoses, including anxiety and panic disorder. I also get mood changes when standing. I am just starting to figure it out - in my 30's! Seems to make a difference to tell a doctor that the mood/anxiety/irritability disappears immediately when I lie down. I collected data for 2 weeks and presented it to my primary doctor. He put in preliminary POTS dx and referral to neurology. Arm yourself with data. Treat it like a science experiment and try to isolate variables of what makes it better or worse. Those details *should* make clear it's not anxiety.
  2. I did it again when hubby got home and had a red line. He had none at all, my son had white. (My son might have POTS but isn't complaining of dizziness or fatigue. He has increase of 40 bpm upon standing, but it was a poor test because he fidgeted so much.)
  3. I've been reading and seems like Bier spots plus white line would indicate "defective adrenegic receptors" - which are the little guys that beta-blockers act upon. I'm especially interested because it seems that an alpha agonist could work too. There's an alpha agonist that is used to treat ADHD and anxiety, after my tilt table test confirms POTS I'll will ask about these treatments - and now I'll better understand what they're talking about! Cool! Thanks @Finnmin!!!
  4. That's so cool! I have only preliminary diagnosis, awaiting tilt table test for confirmation. White line for me. I get white spots on my lower legs while standing for a few minutes, might also be Bier's spots.
  5. 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.
  6. Hey Razzles, I bet your doctor is trying to communicate "your circulatory system is fine" rather than dismiss the validity and impact of your symptoms. Sounds like it's time for a neurologist since you've ruled out endocrine and cardio as sources of your symptoms. Good luck! I hope you find relief of your symptoms!
  7. 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.
  8. I get it the prickly itchies in my legs, but only when blood is pooling and they're turning purple/red mottled. It goes away wen I lie down. It's not everytime, seems to be when I'm not extremely tachy.
  9. 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.
  10. 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)))
  11. @Kris4444, some inspiration for you! This woman has POTS and runs 100-mile ultra marathons! Sounds like managing her symptoms is still a struggle, but WOW! Keep fighting for your dreams. <3 http://killtherun.blogspot.com/p/running-ultramarathonswith-pots.html
  12. I think since I was diagnosed with panic disorder (when I wasn't feeling anxiety!) I have a learned conditioned response to frame symptoms as psychiatric and "mood". Went to the zoo today and was feeling mildly unwell. Feeling like I wanted to leave early, didn't want to walk to see outdoor exhibits. Very vague at first. My HR was 80ish then (my resting is 52 - 55). By the time I found a seat, HR was 100+, can't form a sentence, short of breath, dizzy. In the past I might have framed the experience as anxiety, sensory overload, impatience, blame my son's ADHD, or my crabbiness, and then rumination over my failing to have a successful fun outing. Today, it was just "hey kiddo, we're going back inside."
  13. I would like to know what others experience for mood when standing! I was diagnosed with mood disorders (just about all of them) over the last decade or so. None of the treatments helped or changed mood patterns. I noticed tachycardia upon standing, and then did poor man's tilt test at home. I noticed I would have a profound mood change as other symptoms increased. I would feel bored, apathy, hopeless, or irritable (rage). I laid down after the test and the mood evaporated. I been tracking over 2 weeks and this is no coincidence! When I have a change in mood, it disappears when I lie down. I don't feel it coming on most times, or I'm oblivious to the cause. One time my kids woke me up in the middle of a bad dream and proceeded to misbehave. I woke up and jumped out of bed to address their behavior. Minutes later I complained to my sister about how their bad behavior ruined my day, etc, etc, but after a couple minutes lying down I felt totally normal. Only then did I realize my "mood" was because I jumped out of bed and stood up until I was dizzy. I will have to go back to a psychiatrist at some point to follow up on ADHD diagnosis (since methyphenidate improved my POTS symptoms too!). To prepare, I've been writing down any time I feel any mood fluctuation and surrounding circumstances. My mind is blown. My family thinks of me as a crabby irritable person. (I am cringing writing that, I FEEL positive and patient 98% of the time). I had 3 situations of irritability today. The first 2 I recognized physical symptoms right away and made a change and avoided any mood change or irritability. The 3rd one was an inescapable situation, but I was able to tone down my response to something that wasn't inappropriate. I noticed in the 2nd situation of the day that as the mood and irritability came on, I was having cognitive difficulties. I was sitting on a stool with my knees up and feet on the stool, stirring something on the stove with a candy thermometer. I was getting **mildly** symptomatic, not yet dizzy, not tachy enough to bother graphing it. My son was trying to talk to me and I couldn't comprehend the words he was saying and the effort of trying to hear him and stir the pot felt draining. I managed to say, "I'm symptomatic. Not enough blood. Brain." Funny in hindsight, but I couldn't get the words out! My past normal reaction would have been angry/adrenaline and snap at him out of proportion to the situation. I've told him enough about what I'm experiencing that he understood my un-sentence and found something else to do. When my cooking was up to temperature I laid down, he came over and we talked about what had been on his mind. No mood problem, no irritability, no crabby. My oldest is homeschooled and usually I get impatient and annoyed helping him with schoolwork. Y'know, standing next to him while he is sitting. I help him with schoolwork while I'm lying down in bed? No impatience, no annoyance. Huh. I'm noticing that the more aware I am of POTS symptoms and work around them, the fewer incidences I have of irritability. Down to 0 - 1 a day now. Does anyone else experience cognitive or mood changes with POTS symptoms? How about with mild symptoms? As a first symptom? Does anyone have a mood disorder plus POTS who could speak to what that experience is like? Is it similar to mine? Different?
  14. I have not had similar experience, I haven't had tilt table test yet. I've done poor man's tilt (lying down to standing up) at home and wearing heart rate monitor so I have some data. I was at doctor appointment to get referral for tilt table test and I was so concerned about getting blown off that my sitting HR I the doctor office was 80! (Normally 55-60!). And something different was going on, blood was pooling but warm and red skin verus my usual pale purple and I felt not right, but in a different way than my usual symptoms. That's unsettling to me when the symptoms I observe and carefully track over weeks don't match the symptoms I have in the doctor office! I've only fainted once and I am unreasonably afraid of fainting on TTT, that is, being alone and vulnerable in medical institution because I've had experiences of medical treatment without consent. I am worried it might skew results like you experienced. I'm practicing my relaxation and CBT skills. I am going to try to have my husband come with for the tilt table test, I think I'll feel more calm with him there. I'm sorry you've had this experience. The only thing I can think of is to collect data at home, practice meditation and relaxation, and try the test again?
  15. Can you get in at Mayo Clinic, Rochester MN?