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AmyRS

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Everything posted by AmyRS

  1. I was also hospitalized for over a week in the cardiac unit. The neuro and cardiologist both said the dosage I was on wasn't enough to cause my tachycardia - I was on 40mg a night. They made me stop it cold turkey but it didn't slow down at all, so when I was released from the hospital the neuro ordered me to go back onto it starting at 20mg and to build back up. I ended up deciding on my own to go off it again to see what would happen and if I could last longer than a week without it. I went down to 10mg a night for a whole week and then stopped. Exactly a week after my last pill my rate went down. Unbelieveable!! Amy
  2. My neuro prescribed the Nortriptyline for numbness/tingling/sensations/headaches I was having, so it should be interesting to see if those things come back now that I'm off it. I've had a headache every day so far, but hopefully that's just temporary. The worst part is that he also told me that the med couldn't be causing my heart to do this, and it's pretty obvious that it has been! Amy
  3. I have a MAJOR update to share today. I think I've only posted my story once before, but here's the latest. On Monday I woke up and said to my husband that I felt different. When I put on my heart monitor like I do every day I looked and my rate was LOW! The Monday before I took my last pill, and exactly a week later my heart rate returned to normal! I'm still having breakthrough beats when i'm doing something (130s-140s) but my resting rate has been as low as 77! Usually it's anywhere between 90-115. So I guess this means that it WAS the Nortriptyline that was causing my heart problems. I can't believe the stupid doctors couldn't figure this out. Good thing I decided to go off them on my own to see what would happen. I've had some really bad headaches and tingling and some vision trouble, but I think I'm okay. Considering the heart stuff was only the icing on the cake, I'm not getting my hopes up too high just yet - I left my job because I was so sick before this heart stuff even happened, so it should be interesting to see how I feel now! Today is day 4 of low rates. I don't even know what to do with myself! On Tuesday I did all my cleaning on my own - I didn't have to get my Mom to help me at all! It tired me out but I was able to do it! I haven't told my dr about this yet - right now I think I'll still have the king of hearts monitor done next month, just to make sure the meds haven't done any damage or anything. That's my main concern right now - that this has done something to my heart! I KNEW this wasn't anxiety/panic attacks and I FINALLY have my proof!! Along with my heart rate being back to normal the pooling and cyanosis in my feet has gone as well. Amazing! I am so angry at my stupid doctors! After doing some research on the net I found a study done on tricylics that showed some people developed orthostatic intolerance while on the meds. Why in the world did my doctors not take this as a serious option?! Amy
  4. Hi Mindy, Wow, your story is almost identical to mine! I too am 25 yrs old and have only been married since July. I have to say that my husband has also been such a blessing to me. Your comment about feeling like you're 85 in a young body is exactly what I say!! I have had horrible knee pain in both of my knees for over 2 years now, but I have been able to handle that. My neuro problems started right after we got home from our honeymoon, and my POTS symptoms started about a month ago. I know what all of you mean about not being able to do the simplest things around the house. I get so frustrated and lay on the bed and have a good cry It's so hard to explain to people who aren't sick what it feels like to not be able to do anything. What a blessing this forum is, that we can see we are not alone and can find support from others who understand! Amy
  5. I'm waiting to have a Tilt Table test done, and I have a question about POTS. First, here is my "story", sorry that it's a little lengthy! About a month ago while sitting in a movie theatre I noticed my heart was beating really fast. When my husband and I came home I mentioned it to him and he listened and thought it was going twice as fast as his. We laughed, thinking it was nothing and decided to time it to see if he was right. His was 70 and mine was 130. After realising the "normal" resting rate is anywhere between 70-90 I started to realise something was not right!! We monitored it for a while and finally headed to emergency just in case. I spent the day there while they watched me go from 115 to 160 by simply lifting my arm to scratch my face. At this point I had no other symptoms besides my heart beating out of my chest. They released me that same night, under the impression that the medication I've been on due to some neurological problems (Nortriptyline) was causing my heart rate to be elevated. They made me stop cold turkey that night until I could talk to my neurologist. When I spoke to him, he said he has never had this happen before, only in elderly patients who had prior cardiac problems before taking the meds. Now we were getting a little worried, condsidering nobody knew why my heart was going crazy and it still hadn't slowed down. About 2 days later I was having trouble breathing and quite a bit of chest pain. Back to the hospital, where they admitted me for 8 days to run a bunch of tests. Lung scan to make sure no embollism which was clear, blood work for magnesium, thyroid, blood surgar all clear, echo showed no signs, and holter monitor that recorded beats up to 188. This is all laying in a hospital bed!!! They also had me do a 24 hour urine test which has just come back clear yesterday. Because of the previous neuro problems I had already had a brain MRI scheduled, which also came back clear yesterday. The hospital had originally released me thinking they'll know more when the urine test comes back and once we have the MRI as well. When I visited my family dr after being discharged, she tried to convince me that this is generalized anxiety disorder and chronic panic attacks. I've only had difficulty breathing once, and I certainly haven't been anxious while watching a funny movie. I've been starting to feel like they're putting me off because they can't figure out what it is and they don't want to take the time to. I saw her again yesterday (to follow up & get those results) and she didn't mention panic/anxiety once. I was so happy! She also finally admitted that she didn't know where to go next. I mentioned that I had found out about POTS and have almost all of the symptoms, and she agreed it was worth checking into and has put the wheels into motion to get me a referral for the tilt table test. I'm not sure if the whole tachycardia thing is seperate from my neuro symptoms or not. One of the major new symptoms I have noticed since the movie theatre has been the colour changes in my skin. My feet and toenails turn a lovely shade of blue/purple when I am sitting up or standing and the area in my hands by my thumbs does the same thing. I also have incredible bloating when I'm finished eating and feel full much quicker than normal. I have a heart rate monitor now and I have been checking my numbers when I go from lying/sitting to standing. I am usually somewhere around the 27+bpm increase and always at least into the 120s/130s. Yesterday I had a nap on the couch and decided to try it when I hadn't been on my feet for over half an hour. Still lying down my rate was 107 and when I stood up it went to 153!!! My question is - I see all the sites mention at least a 30+ increase in beats on standing within 10 minutes. My rate always increases within the first 10 seconds (along with a brutal head rush) and goes down a little, and then comes back up and evens out in the 120s. Do you have to maintain that increase for the whole 10 minutes? Also, I have never fainted in my life, and I know that is a big symptom. When I first stand up and get that "rush" I feel dizzy and like I could black out, but I never do. I'm so glad to have found this message board - I am already off work due to the severity of my other neuro symptoms and it's great to have a place to come to for support. I've already been to potsplace.com - that was when I realised how similar their symptom list is to what I have. Thanks for reading all of this if you actually made it through! Amy
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