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pinkbubbles1680

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  1. I actually haven't had that test. I did the gastric emptying test and instead of swallowing the pill I had an anoduodenal manometry test which is where a tube is fed through your nose into your intestines and they monitor you for 24 hours while eating and what not and the tube measures the contractions in stomach and intestines ....... it was an awful test probably one of the worsts I've had
  2. I have quite a large team of doctors. My main POTS doc. is a cardiologist I just started seeing him about a month ago before that I was under the care of a team of a different cardiologist a neurologist and a gastrointerologist as well as a physch team
  3. I need some words of encouragement or something. I was diagnosed with POTS almost two years ago before my senior year of high-school. It's been pretty debilitating and I've been in and out of the hospital since my diagnosis. I'm actually away at college right now trying to finish up my second semester which is a major achievement on its own. I am trying so hard to do everything that I want to do in college like going out with friends and doing activities and trying to lead a normal life. Well... leading a normal life is exhausting with POTS and it I've come to realize its pretty much impossible. The more I try to be normal and do normal things like go out on the weekends and stay up late the more I pay for it later. My issue is accepting my illness. I get so sad and so lonely, I have to sit in my dorm room alone knowing that I need to rest but It is so hard because I just want to hang out with my friends and do stuff. How do you guys get through it ? Thanks so much, ~alex
  4. Hi pinkbubbles, I don't know what kind I have as my doc tells me they are all the same. But first, I thought I had asthma for 15 years and was taking all the wrong meds that were making me so anxious. After a severe reaction to a BB I was sent to a plummy dr who sent me for breathing tests where I found out Ididn't have asthma. So, I wondering when you take your inhaler. Also when we lay down we all feel paps more because we are still and they seem scary. Caffeine is hidden in so many foods and meds. I posted a list in another post somewhere here recently. But just google foods and meds with caffine hidden in them, you may be ingesting some and that's the fist thing docs have you stop to see if the paps go away. Another thing you could try is taking your ativan under your tongue as it is absorbed into the bloodstream quickly and you may feel more relaxed and fall asleep easier if you take it at bedtimel Try to brush your teeth right after as your teeth being exposed to melting meds can become decayed quicker. I found once on the right meds for pots I never really feel anxiety like I did before when I was on all the wrong med that only made me worse. I have a list of meds a mile long that I just can't take. All of that make sense now to me and my docs. I hope you find relief and feel better soon. I always google all my meds when I feel off and see if there is something there or a missed interaction with something else I'm taking. Also, remember to include all herbs and vitamins with your meds as they effects us as well. Take care, Bellamia~ thanks for your post bellamia, I am not currently on any regular inhalers for my asthma just once a day singulair I haven't had too many asthma flare ups and I'm glad because I know my rescue inhaler can cause my heart rate to skyrocket. I do try to avoid caffine but I'll look into foods that have it hidden in them I also have heard that tip about putting ativan under your tongue it definitely does work a lot faster but I have not heard about brushing your teeth after it so thank you for that ! ~alex
  5. thanks for all your help guys I'll let you know what the doctors find out with my POTS !
  6. Someone help .... I am having an awful time dealing with weird symptoms. My doctor thinks I may have hypo-adrenic POTS which I'm getting tested for next Friday. I'm also seeing a Psychologist and a Psychiatrist together and the psychologist thinks I have trouble dealing with anxiety which is why I'm getting panic attacks. My cardiologist the one who thinks I have hypo adrenic POTS said that its just my body secreting to much adrenaline I'm so confused and I dont know what to do. My symptoms were really bad about three months ago I would get palpitations and chest discomfort and really bad panic like three times a day. Since then I've been taking ativan drinking more water and I increased my dose of florinef my symptoms have improved a lot, but almost everynight I start getting weird panic symptoms like chest tightness, palpitations, and then I get a little panicky. Does anyone else with hypoadrenic POTS get bad symptoms right around bedtime. How do you know the difference between an anxiety disorder and POTS ??
  7. So I hit a major wall with my pots in January of this year. I have been having awful palpitations, digestive issues, panic attacks, dizziness, and overall fatigue and feeling like crap. I was taken into the hospital had tons of testing done to rule out disorders other than POTS. I was released and my neurologist told me to double my dose of florinef and drink more fluids. I took her advice and somewhat improved, but not enough. She referred me to mayo clinic. Mayo said I had all the testing they would do and said it would be a waste of time to go all the way there. I felt like I was at a dead end. I went onto DINETS physicians lists and I found a POTS specialist like 30 minutes from me Dr. Abdallah at the childrens heart institute. My neurologist didnt really know what a cardiologist was going to do in regards to POTS and didn't seem to confident with me going there. I had basically had it with doctors, but since this wasn't totally out of my way I decided to go ahead and take the appointment. I was so pleased with this doctor. I spent three hours there talking with his tech and getting tests run like ekg's and echos. When he came in to see me he did a physical exam which was extremely thorough and is almost positive that I have EDS and I can't even explain it the way he showed me how my POTS was effecting my body it was amazing. When I stood up all the discoloration was very apparent in my extremities. He thinks I have hypo-adrenic POTS which is great news because I've been having so much Panic and now it is all explained. I'm having another tilt table test run next week along with some other autonomic testing. I cannot tell you how pleased I am. I finally feel like I'm in good hands with this guy said he can definitely help me and I cannot wait to see where it goes. There is hope out there guys ! ~alex
  8. Well I guess I called the wrong clinic at Mayo the lady on the phone told me to phone neurology and I guess it was adult neurology and I'm still rather young. I didn't know that there was an actual POTS clinic I was suppose to call so I find out next week if they will accept me.
  9. Well I was referred to the mayo clinic in Minnesota but they just called me yesterday and said that I got rejected by the doctor so I guess they wont see me at that particular mayo clinic. I'm not really sure what I'm going to do now my mom is looking for other POTS clinics around the country. Thanks for your replies ~alex
  10. Hello there, I'm sorry to hear that you have awful brain foggyness. My neuro suggested provigil and this medicine can also help with fatigue so I thought you should know. I'm in college I'm freshman in my first semester, I was diagnosed with POTS when I was 17. Its been rough there have been lots of ups and downs. I took 16 credit hours last semester and had fridays off to sleep and I did well I wasn't super sick and I made it through. This semester has been pretty awful I had to drop down to 13 credit hours and even with that I've been struggling a bit to keep up. The important thing for me has always been to plan school days so they are short and in the morning. Mornings are my best time of day when I'm usually feeling somewhat okay. If I only have one class in the morning even if I feel awful I will still go because I know right when its over I can go to sleep or do whatever I need to do to try and feel better. Another thing that I have done is started planning ahead. Get projects done early, start work early, when you're feeling good try to get a lot of things done. It helps a lot with my stress levels and being sick if I plan ahead. I am registered with the office of disabilities at my university. It's great to be registered just to show teachers that your under some extra stress have a debilitating medical condition. My teachers have been extremely accommodating to me. Always try to keep your teachers well informed on how you are doing. E-mail them if you cannot make class and tell them you are struggling and they may be able to help. Like elfie its important to eliminate stressors in your everyday life. I moved into an apartment and out of a dorm a couple months ago because it was just not working for me. I still have roommates but they aren't too bad and next year I will try to get into a single room. Hang in there and feel free to contact me anytime ~alex
  11. Hello I'm new to DINET I'm 18 I was diagnosed with pots in 2008 after being hospitalized for malnourishment due to gastroparesis Since then I've been dealing with a lot of icky gastro issues. I've been on ng feeding tubes and had to drastically change my diet -very slow motility -bloating -nausea -vomiting My stomach has been improving and I can manage my diet okay now with out a feeding tube I was put on a florinef in 2008 and I didn't really have to many pots issues besides the stomach motility problems and really bad fatigue. About a three months ago I started having awful pots issues: palpatations, extreme fatigue, panic episodes, dizziness, flu-like symptoms I could barely function... tried midodrine but it made my bp skyrocket and I was rushed to the e.r. Doctors decided to up my dose of florinef from .1 to .2 mg. Since then I've been improving but I'm still doing pretty crappy My neuro and gastro docs. want to send me to mayo clinic to be evaluated I feel like I've had every test under the sun and tried almost every medication I've had really great medical care and I'm just not really sure what more they can do at mayo clinic I was wondering who has been there and if it helped. I would love to hear peoples experiences Thanks so much, Alex Testing I've had: 24 hour urine test 24 hour EEG EKG zillions of blood tests : cbc's, vitamin levels, cortisol, thyroid all normal gastric emptying study : showed significant gastroparesis brain mri's and spectroscopy antroduodenal manometry : neurogenic intestinal dismobility tilt-table test : POTS and NMH colonoscopy upper endoscopy ct scan of abdomen barium contrast studies probably a million others that I have forgotten
  12. to those above yes reglan, small doses of erythromycin, and a few other drugs can help with motility. I've been on a couple different motility drugs to help with gastroparesis but nothing seemed to work. My diet consists of a lot of pured things like apple sauce. some things that I have heard try to eat very small portions a couple times a day soups and liquids usually work the best I drink ensure to help get enough calories throughout the day I don't know if you eat dairy but I used to and it was awful for my motility so I went on a lactose free diet and it helped A LOT If you are feeling like you are having a craving for something sweet try chocolate soy milk... It always works for me (and I think you can find some of those without sugar) I would stay away from red meat somethings that sometimes work for me are tiny portions of chicken and fish have you tried baby food?? some are gross, but some aren't too bad Hope things get better for you !
  13. hmm I haven't heard anything about midodrine causing mini seizures. I tried that drug recently and I felt like I was gonna die I guess I took it too close to when I was going to bed. You're not suppose to take the drug when you lie down because it can make your bp skyrocket and thats what happened to me and I had to be rushed to the e.r. .. no more midodrine for me lol
  14. Hello I am new to this board as well. I have been struggling with the pots/panic attacks that you described. My cardiologist and neurologist said that it is really important to stay hydrated because of low blood volume too. I'm also on florinef which helps to raise my blood pressure because mine tends to run very low taking that medicine helps too. I also have ativan which I take as soon as I start feeling a panic attack coming on. I used to have to take a pill everyday but now I'm down to taking a forth of a pill every couple of days so I promise it will get better and there are meds that can help also try deep breathing and sometimes changing the position your in can help a lot.
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