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Everything posted by Urkittenme

  1. I appreciate everyone's response, thank you. She did mention that she thinks my stomach pain is probably from gastritis or colitis because I frequently have diarrhea, and said that it can feel like a sharp knife stabbing pain depending on where it hits in the intestines, I just find it hard to believe that pain would always be hitting my ovaries. And quite often. She wants me to document the stomach pain and diarrhea to see if they correlate. She is convinced because my periods are regular that I am fine? But I've read nowhere that you must have irregular periods to have pcos. My periods are light and last 7 days. I have ridiculous acne on my jaw and chin. However, my brother was just diagnosed with gastritis through an endoscopy. I wish just once that someone would take my pain seriously, even if it were just my own mother. The doctor was shocked when I said my BP rises on standing and said my BP cuff is probably inaccurate. I guess I'm glad I pressed about the ultrasound, and she's going to help with not labeling as "infertile" anywhere so that I don't get shunned by insurance. The gastroparesis is definitely a possibility but I am quite sure there is more going on. Now to sit back and wait until July for my echo and ultrasound. I guess I'll have to look into the gastroparesis next. I eat a healthy diet, always home cooked no junk at all besides Tortilla chips and sometimes Ritz crackers, I'd like to go vegan but I have such a hard time eating enough as it is. I appreciate you all!!
  2. Saw a doctor at uc Davis about ttc. She normally doesn't do anything about failure to conceive until actively trying 1 year, but when I pressed about my stomach pain she agreed to schedule an ultrasound for 3 months but expects it to be normal and suggested I probably have ibs. I mentioned the tachycardia because my hr was 150 walking to the office and 113 as my BP was taken, she said it's probably my body's way of compensating for being so skinny. Does this statement have any merit? I'm 5'9.5 at 120 (usually fluctuate between 117-130 so I'm at a low point at the moment) I always figured I am skinny because my heart is working so hard, just got a fitbit and it says I'm generally in "fat burning zone" but she insists it is the other way around. Could this be true?
  3. How exciting! Congratulations <3
  4. @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.
  5. My dad has severe cluster headaches. He would often bang his head against the wall and sometimes curl up in a ball sweating because the pain was so bad. However he gets them 3 times a day or more, not a continuous headache. If that is what you are experiencing then I am so sorry. Have you tried oxygen? I can ask him what he does now to manage the pain if you'd like. I know that he uses medical marijuana and believes it is the only thing that truly helps, and he's tried many many things over the years.
  6. 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!!!
  7. I wish I knew what caused this! Though I suspect I have mast cell activation which I suppose would account for the itchiness. I scratch so hard I bruise all the time, especially legs. I'm constantly itchy I'm random places. Wish I knew how to help, just thought I'd let you know you're definitely not alone. Take care
  8. @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.
  9. @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.
  10. 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.
  11. @KiminOrlando Cooking from the Couch; episode one: All My Spoons are in the Dishwasher If it works, there ain't no shame! Lmao!!
  12. Ohh I just love to cook and bake. I especially love that I can have control over what I'm eating because I can be soo picky sometimes! My crock pot and rice cooker are used verrrry often. I was recently gifted a food processor and I'm in love. Days that I don't feel like cooking, usually throw 2 cups of brown rice in the cooker and steam some vegetables on the stove. With teriyaki sauce or ranch, that's a good enough dinner for us. Usually the day after grocery shopping (or...whenever I get around to it..) defrost 3 or 4 chicken breasts, put them in the slow cooker with some water and some spices, and cook until it reaches around 165° [5-6 hours] and now I just cut into large chunks and pulse in the food processor for 2 seconds to shred. If I've made a large batch, I'll place some in individual bags in the freezer (thaw in microwave for quick dinners.) Chicken is usually a go to. Pork shoulder with root beer cooked in the slow cooker, then add bbq sauce after shredding....easy peasy delicious pulled pork sandwiches. Sometimes bake over-ripe bananas into muffins for quick breakfasts. For snacks I'll bake pretzels with ranch seasoning and garlic powder in a big batch to last the week. If I'm chopping a bunch of vegetables, sometimes I'll bring a big tray and sit on the couch. Not feasible for everyone but hey. Whatever. If you don't use pinterest, you should! Type in "quick dinner" or "easy dinner"- soo many ideas. I probably have 1000 or more food pins, most of them are super easy to do!
  13. Thanks for sharing! Brittany Murphy's brother discussed her having had POTs (or maybe it was general dysautonomia? I can't remember at the moment) in an interview. Is the article suggesting chemotherapy for POTs? I can't quite grasp what the research concluded as I've been pretty out of it today.
  14. Sitting: 70's Standing: 100-115 Walking: 130 Minor exertion: 130-160
  15. I've been pressing 2-3 times a day when my HR goes above 110, but the most strenuous things I've done so far are dishes, laundry, and walking around the grocery store. I will start keeping a log. Thanks for the advice
  16. @KiminOrlando this is the exact issue I am having I wish I could understand why. I'm starting to take photos of the physical things (blood pooling, livedo reticularis, raynaud's, ect..) associated with eds...it's harder with pots, I just have a bp cuff at home I use to determine how the day is gonna go..but that can be used to document evidence as well. Others have also suggested an o2 monitor. What I'm getting at is, eventually I will gather all this and write a letter to the specialists in my area (got the idea from the forum!) explaining symptoms and support with my own documented evidence along with any doctor reports I have. This might be something you can do as well? Hopefully someone else knows more but that's my suggestion. Good luck~
  17. @MomtoGiuliana so far I've seen 2 PCPs after being denied from several cardiologists. I went to a clinic and had an abnormal ECG. I almost feel that alone should warrant the cardio, but still am being asked for a referral by the offices that I have contacted. I saw a 2nd doctor, my new PCP, who doesn't think there is enough information for a referral, which is why she ordered the event monitor. If, when she recieves the results, says that everything is fine and I don't need a cardiologist, I just don't know what I am going to do. You actually just gave me the idea to call my insurance and see if they can do anything to assist in finding an office, so I think I will do that today! Has anybody been referred to a cardiologist with tachycardia alone without heart abnormalities? I do believe there's something else going on but if the event monitor doesn't catch something else, should I be able to insist on the referral from my primary care doc at the follow up appt?
  18. @MomtoGiuliana I guess what I should have asked is 'would they take me without a diagnosis'. I have the highest tier PPO coverage, yet every cardiologist I have contacted wants a referral. With my family history of heart attacks and a-fib I did not think I would have been denied this many times. Even my doc said they wouldn't take me without more evidence. But thanks for the response, that definitely gives me hope. I will just have to keep trying.
  19. so sorry you are feeling badly. Glad you were able to get some time off work. I truly believe in the power of positive thoughts- don't give up hope! Sending positive vibes your way~
  20. @pixiegram hey there, I'm curious- (and probably too curious, if so I apologize) had you gone through other tests (like ecg or 24hr holter) that showed anything that your doctor's requested the monitor for? Did yours auto trigger without you having to press a button? I understand your doctors wanted more information..did they get anything useful or helpful from the 30day report? By the way- welcome to the forum! I have yet to press the button during episodes of chest pain because if it is nothing I'm afraid my doc won't take me seriously I almost think the 30 day monitor was a way to push me to the back-burner! Bummed because my doc seemed so nice.
  21. @Buzzbev gosh I feel your frustration. That is exactly what I'm worried about. I can't believe it's been *this* hard for me to even get a referral to a cardiologist. @MomtoGiuliana do the specialists take patients without referrals? I don't think anyone is taking me seriously because I look so healthy. Ugh.
  22. Thanks for the summary. I got an event monitor that only records when I press *sigh* so much for figuring out what's going on, I'm sure all that will come up is normal rythymn tachy. Hoping that will be enough to get me to a cardiologist for am echo.
  23. Kalamazoo Do you have a doctor or team of doctors handling your care? It sounds like you're experiencing a lot of pain that isn't being taken seriously Did you have your levels tested during a ttt to determine hyperpots?
  24. I don't have anything very helpful to say other than I definitely experience this. It does not happen all the time, though, and I haven't been able to pinpoint a trigger (other than every time I drink alcohol) but I almost feel as if it comes in "waves" (a few days or a week..then goes away for weeks..) The only things I've found to be helpful are yoga and a heavy dose of benadryl. It definitely happened more often when I worked retail and got off late and had so much adrenaline that I couldn't get to that point of sleeping soundly before I had to be up in the morning. Sorry you're going through this. Doesn't help at all with the fatigue we already have to deal with. I hope it gets better for you.
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