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Lemons2lemonade

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Everything posted by Lemons2lemonade

  1. Ugh, I know exactly how you feel and it is awful. What terrible way to wake up in the night. This resolved after I started taking my ssri, celexa, now I sleep soundly. I hope you find something that works for you, in the mean time, stay strong!
  2. I do this all the time! At first, after being diagnosed, I decided pots wasn't going to affect my life, boy was I wrong! Now, what's worse, is that I'm always worried it something else, I guess I am in denial about what pots is capable of.
  3. I had anxiety both before and after florinef, so its hard for me to tell whether its the florinef or the pots. However, I have noticed thst steroids do make me a little wacky. I take an ssei, celexa, to cope with the anxiety. However, I went on the florinef in the first place because I was having anxiety/pots issues. Kj, what prompted beginning the florinef in the first place?
  4. Haha yes! I just thought it was part of my imagination! Maybe it has something to do with balance? Puppylove, we had an earthquake when I was in class once and I was under the door before any one else knew what was going on. For a moment, I got really embarrassed and started to walk back to my seat (everyone was looking at me like I was crazy!) Then things started shaking!
  5. So, i am one quarter away from graduating with my undergrad, one quarter! And finally, one of my professors has gotten back to me about finishing some incomplete coursework. This is my senior capstone class in communications and the topic is stigma. I have chosen to write about the stigma of women and illness in the medical field--specifically the reception of women patients by doctors and medical professionals. I know everyone here has had experience with this and was wondering if i could get some leads from anyone on here as to peer-reviewed journal articles regarding this. Additionally, any opinions on the stigma that people with our disease get from their doc's would be helpful. This includes negative stigmatizations or conversations that you have experienced with your docs regarding your healthcare. Note: i thought about posting this in off-topic, but i think stigma is a big part of dysautonomia and that the stories would be better shared in the dysautonomia forum.
  6. doozly, that is VERY interesting because after the test my urination increased significantly--like 20 times that day and 20 times the next...wonder if there's something to that--mast cell? Maiysa- my ACE levels were high during bloodwork, so they wanted to make sure i didn't have sarcoidosis. Interesting that you got dizzy, i have also been dizzy which is abnormal for me...just thought it was from the big wham. Sue, that is interesting, my tech told me that the vessels are opened by the dye lol!
  7. As per dr. goodman's recommendation i just got my chest ct scan done to rule out sarcoidosis. (I had high ACE levels). So the technician is explaining the process to me and she tells me that the contrast is going to make me feel very warm all over and get this: like i'm peeing my pants! She tells me the reason it does this is because it vasodilates so that good images can be taken of the vessels. I swear when she said it, it echoed (vasodilates... lates ...lates... lates). Obviously the pots warning bell goes off. I explain to her that i have issues with low blood pressure and she says not to worry. I figure, whatever, how bad could it be? Within 10 seconds of the contrast being injected my whole body got hot and i got extremely short of breath--the worst i have ever had. It felt like i was trying to breathe in from a vacuum hose. Then i felt bad--real bad. The closest i've had to that was the nitroglycerine an emt gave me once. Then after the procedure she tells me to be sure to drink a lot of water because the contrast can dehydrate you. Great. I've just been vasodilated, and now i get to be dehydrated. This is going to be a great day! I came home and drank probably a liter or more of water and just crashed in bed. Waking up periodically with dry mouth, chugging glasses of water, and then being so weak i went back to sleep. I have been drinking water all day and i am still light headed---bah! I am just hoping it resolves itself quickly!
  8. Jp, I suffered tremendously with this. Sometimes, I still do. If it is really interfering with her life, you could always try a benzo or other sedative. The only catch is that with me, the benzo created drug seeking symptoms similar to pots. It's hard to understand from a healthy person's perspective, but it really feels like you are going to die right there. The best way I can describe the feeling is like the rush you get when cliff jumping, or are in a car accident, over and over again all day every day. One of the things thst helped me was knowing that I am not going to die. Still though, I get anxiety when I am alone.
  9. You could say you are experiencing increasing numbness and tingling in your legs. Or you could just be honest and say that neuropathy is a cause of pots and you'd like to rule it out.
  10. Yogini brings up a good point. I also became neurotic with my hr monitor. I think that there is something reassuring about it because it let's you know all of those feelings in your body that tell you that you are dying aren't real. In that, it can become an addictive reassurance. There were many a time I didn't have my hr monitor and began to panic-- it was like being separated from my teddy bear when I as little or something
  11. i did it mayo, to test for neuropathy that may be causing my pots. They did it on my feet and up my leg, also up my arm i believe.
  12. I seriously looked into buying a hr monitor and compared brands such as polar etc. What I determined from the reciews I read is that those types of monitors wouldn't suit me well due to accuracy, convenience, price, and function. Instead I opted for a pulse oximeter like like kind used in the Dr.s office. I bought it off amazon for around 30 dollars. I chose this because it also shows oxygen saturation, and can tell me whether or not my shortness if breath is founded. Monitoring the pulse can be helpful, to gauge what your body is doing.
  13. I love my florinef and was told by my internal medicine doc that salt helps it work. I take 1/2 tsp of salt a day mixed in 3-4 oz of water-- I found that this works better for me than the salt pills. Also, my potassium runs low. So, I eat a lot of potato skins, avocados, bush black beans, bananas and oj. How florinef works, from what I have read is that it exchanges sodium for potassium and that you urinate out the potassium. So its pretty easy to become deficient When my potassium gets low I start to get weak and disoriented. Additionally, eating extra potassium was not enough. I had to take a potassium supplement. The potassium pills are rough and can be extremely hard to digest. Now, I take the powder form and it has been much more helpful. When I first started florinef, I was getting my potassium checked once a week for the first month. And now I get it checked every 2-3 months. One other thing about florinef is that for me it took awhile to begin working well. It took 3 months to really start helping symptoms.
  14. I hate cardiologists. They are the biggest jerks in the world! And unfortunately, a lot of times that's where we pots patients end up. However, you have to remember, that a lot of the time, these guys are the one's who are doing heart surgery, so they see people who don't make it all the time--people who really are going to die. First of all i think this makes them cold. Secondly, you have to consider that they have a pretty good idea of whether or not you are going to die of a heart problem. To them, if you're not, then they can't really help you. I broke down in front of one of them before, and he wrote in my chart that i needed serious therapy...lol! I was just mad that he wasn't helping me.
  15. Jr, you are totally founded in your insurance concerns. I had the same concerns before i left, talked to the same man, and ran into problems while I was down there. First off, i also do not communicate well with that man he sounds older but i have never met him in real life--he is a receptionist i believe for the neurology office. Honestly, when i call, i just ask for Janie, Dr. Goodman's nurse so i don't get stonewalled by him for whatever reason. So here's the catch on the insurance issue. So your insurance is going to want to approve any out of region care that you get. This includes testing, consultations, mris, etc. What i did, is i called my insurance company before i left, and had a clear conversation on the phone with them about what to do when such issues arise. I took down the person's name, date, time, and confirmation number--she said not to worry, that everything would be covered. I got down there, and my insurance company began to fight. Here is my post about it All i can say is back yourself up. Bring a paper copy of the referral with you, and try to iron out as much as possible before you go. Ask about what their coverage policy is on tests, what if this doctor orders tests(which you can bet he will) what is the process of getting approved for such tests etc. What if this doctor wants me to see another specialist down there, is that covered, (you may need 2 referrals). Seriously, go get a notebook, or staple some pieces of paper together and start recording information. Who you are talking to, the content of the conversation, what time the phone calls are made, the date, the phone number you are calling from, and any confirmation codes you can get. In that notebook, put in a paper copy of the referral. Also, include phone numbers like to your doctors office, insurance phone numbers, etc. This notebook goes with you to mayo.I believe this recordkeeping is the ONLY reason i was approved in the end. Additionally, if you run into problems on insurance "phone lines i.e. customer service call centers" google the corporate office for your insurance company, call the number, and ask to speak with the medical director. You will probably get a secretary, who has the ability to push things through--i wouldn't do this until you are down there and have problems though--sometimes you don't want such high ups knowing that they approved such a costly referral. Really it is kind of a catch-22. I need to be approved to get these tests done, but i won't know what tests i need done until i see dr. g. So the best you can do is know what needs to be done, so that while you are down there, things are easier to navigate through. And of course--bring your cell phone and some type of internet access if you can. It would be nice if we lived in a world where these problems with insurance didn't exist but they do. Its sad isn't it, that you have to fight for your care? This is the type of list i was looking for, that no one at mayo would give me, but i am giving you, your tests may be different, but i have a feeling many of these are standard procedure, maybe you can get your insurance going on some of these. These were the tests ordered for me by dr. g at mayo: For lab: 24 hr urine sodium Bloodwork: -am cortisol - 25 hydroxy cut d2 d3 - alt - anca panel - angiotensin converting enzyme - antinuclear ab - ast - vit b 12 - calcium - cbc - copper - creatinine - electrolyte panel - extractable nuclear antigen antibody with ena panel - folate - ferretin - glutamic acid - gliadin antibodies - glucose - hemoglobin 1ac - lactate plasma - paraneoplastic autoantibody evaluation - pyruvic acid - sedimentation rate - tsh - tissue transglutaminase ab iga - tryptase - catecholamine fract ortho endo And for diagnostic tests: - emg - holter monitor - autonomic reflex screen ( look up to get info on it) Also, be sure that the scope of your referral is wide enough to meet your needs, such that the language includes more than just consultation but also imaging, lab/bloodwork, and referrals to other specialists if needed. The big one is the autonomic reflex screen--this is the one that most places can't do--use it to your advantage that your insurance provider can't do this. Here are some additional posts i had about my experience down there, hope it helps! Let me know if you have anymore questions.
  16. It's funny I have been feeling really rotten the past few days and had no idea about it. Thanks for sharing!
  17. Prozac made me crazy, literally! I prefer the celexa I take now.
  18. What I am looking for here is a connection between anesthesia and pots. I remember reading that surgery is a large cause and was wondering if perhaps it is not the surgery but the anesthesia that is causing problems. I have been under general anesthesia three times. And after my first (wisdom teeth) I was so sick for days. It was the only other time in my life besides pots that I felt so terrible. My dad had to carry me out of the dentists office to the car. I found this idea yesterday when I was rea reading up on acetylcholine-- one important neurotransmitter of the nervous system including the peripheral and autonomic divisions. It also inhibits cardiac tissue, and is responsible for lowering hr. I have thought time and time again about how similar pots is to being poisoned--sweating, confusion, fast hrs, loss of conscious, dizziness etc. Many poisons like botulism for example are so deadly because they block receptors. Then the heart fails, along with ceasing respiration and kidney function etc. I was interested to read that general anesthesia works in a similar way. " Stage 2 anaesthesia, also known as the "excitementstage",is the period following loss of consciousness and marked by excited and delirious activity. During this stage, respirations and heart rate may become irregular. In addition, there may be uncontrolled movements, vomiting, breath holding, and pupillary dilation. Since the combination of spastic movements, vomiting, and irregular respirations may lead to airway compromise, rapidly acting drugs are used to minimize time in this stage and reach stage 3 as fast as possible.
  19. I never had pots before I went under anesthesia. Wondering if anyone on here has never had anesthesia.
  20. Yes my thumbs have them severely. Almost 10 on one thumb, 2 on the other. They are very prominent.
  21. I just finished my first week of server training at a fancy waterfront restaurant. I didn't know if I was going to make it, but I did and each day on my feet things got easier. I try to share my stories because I want to share hope. I still have pots. But I have found a way to work it into my life. Sometimes I feel like pots is like a downhill stream. If you try to fight the current, you're done for. But if you relax and swim with the current your chances of getting to the other bank are greatly improved.
  22. I agree with where you are going with this. At night important things happen in your body like kidney filtering, immune action etc. I think this may play into why pots is so bad in the morning instead of just the vertical readjustment from a prolonged time being horizontal. I remember when I first got symptoms of pots I stopped dreaming. I didn't realize it until I dreamt one night. I woke up feeling much more refreshed the next day.
  23. Mine also goes away after moving around. The tingling feeling, I think I know what you mean. Its kind of like an itchy twinge.
  24. Dana since you are having such large hr increases on standing maybe that's where you could start. Just trying to stand for a period of time each day. Perhaps you could talk with your doc about this. If that's too easy maybe walking for 5 min or so each day. I felt that I had to start low--really low and work my way up.(this began 8 months ago by flexing my leg muscles in a hospital bed--that was what challenging was for me at the time) Don't over do it. As far as meds, just be sure you are giving them adequate time to work, many take some time to start seeing effects. I didn't see ssri on your list, is that something you have tried? When I started my ssri, my hr started to slow down tremendously--it was a godsend. It also helped me sleep at night. For awhile there I was getting 1-2 hrs or less a night. It was terrible. But I couldn't sleep- too much adrenaline. Also, having constant high hr or blood pressure can create turbulence in your blood leading to atherosclerosis. I also looooooove my compression socks
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