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About RhinoGut

  • Birthday 12/29/1985

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    Portland, OR

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  1. Hi Everyone! It has been a while since I have been on. I have been on for several hours reading through tons of topics! Anyway, I was going through some of my old medical records and I came across my old holter monitor results from last year. It stated that I had several runs of bradycaria lasting no longer than 12 beats. I didn't think much of it at the time, but now that I think of it, several times throught the day I get short runs of bradycardia from standing to sitting, and then my heart rate will then return to "normal." Then I also noticed that this will happen if, for example, I am standing and I drink something. My heart will beat slow and pound a little for about 10 beats and return to my average standing HR of 120. Just wondering if anyone else has this same thing happen. -Ryan
  2. Yay!! Congrats. Im trying to go back to work, but my employer refuses to let me work part time and allow me to sit down every once in a while. They expect me to stand for the full12 hour shift! I did however have an interview at a mail-order pharmacy. I Hope I get it. I will miss my regular pharmacy patients!
  3. I also wore a holter monitor and my heart rate was from 75 to 145. I had a couple PVC's and a few episode of brady, and I was told it was NORMAL. This was all well before my diagnosis. At the time I did not know much about heart rates and what was considered normal. When I found out what my heart rate should be six months later, I remembered that my heart rate was 145 and realized that I wasn't doing ANYTHING that day expect lounging around the house. That's what led me to search online for a diagnosis. I was also told to do a journal, but they never mentioned anything. I wrote down that I walked around the house, but they didn't seem to notice that my heart rate should not be 145 while walking! As everyone has mentioned, holters are just used to look for abnormal rhythms or they will just call it inappropriate sinus tachy like they tried to diagnose me with! --Ryan
  4. My veins do the same thing. I have noticed it is more worse in the morning and at night as soon as I get tired. My legs will start burning and my hands will start to tingle or go numb if I stand too long in one place, but as soon as I start moving a little or elevate my arms it goes away. The veins between my ear and temple even swell when I am laying flat. My first doctor told me that I was drinking too much water.. lol. My well-educated-in-POTS cardiologist told me that because the parasympathetic and sympathetic are all outta whack, vein constriction and dilation are over exaggerated. That's why when it hot or humid and the shower causes the veins to dilate and swell with blood. And when it is colder, our veins can over constrict causing our hands and feet to be cold or colder than usual. Her is my arm at 1am and I am very tired and it's warm in the house. --Ryan
  5. Congrats Jared! To answer your question about discharging your loan, I have a close friend that is trying to having her student loans discharged. She was recently diagnosed with ALS and only has 5 to 10 years left. From what I have learned from her is that she had one heck of a time trying to get it taken care of. They first told her that she had to file for bankruptcy first, then and only then would they even look into forgiving her loan even when being on disability. So that was a no go for her, but because she is receiving federal disability, she was able to defer her loan payments for up to 3 years. From personal experience, I know that I can't do a discharge, but I WAS able to defer my loans because I am on food stamps. All I did was fill out a economic hardship form (by fill out I mean check a box...lol) and sent my foot stamp acceptance letter and it was deferred 3 days later. I can do this for 3 years. It obviously won't get rid of the loan, but for me not having an income, it helps tremendously. Oh, and in your case, my loan company said that IF I was on disability, all I would have to do is send in the acceptance letter, so I am assuming your loan company would be similar. --Ryan
  6. I used to have this feeling too after I ate in the morning, but I have learned to wait a little while in the morning before I eat. I will usually get up in the morning and wait for the morning dizziness to wear off. I will drink several glasses of water and wait about an hour. Usually I am starving by now and I am able to eat quite a bit and not feel so bad after eating. I will also "try" to go for a walk right after I eat. I assuming that this can help by not letting all the blood pool in the abdomen. -Ryan
  7. Yes, It showed something on the MRI However, it is unclear if it is a "mass" or something else but they are leaning toward a mass. My cardio thinks that it may be pushing on my optic nerve causing the visual changes and POSSIBLY the lightheadedness. I just love all the uncertainties! I had my results sent to 3 endo's here is town since all of them only have openings in late july through september! So we will see what happens! Christina, You are so right. I was terrified to sleep for months! It made me more anxious and made it harder to sleep. Once I accepted that I wasn't going to die in my sleep, I started sleeping like a baby and my anxiety got better. I actually look forward to sleeping now. Getting restful sleep changes everything! I certainly don't miss waking up in a panic and drenched from head to toe in sweat!
  8. I am constantly lightheaded as well. And it seems worse when I am sitting or laying down. Then, if I watch TV or focus on something for too long, I get even more lightheaded and then the "visual disturbances" kick in and the brain fog. It's like I am looking through plastic wrap. The worst part for me is when I lay down to go to bed. As soon as my head hits the pillow I get the spins and I feel like I am going to pass out. My cardio now is not sure it is POTS related or if it's the new found "mass" around my pituitary glad! Guess I gotta wait for the endo appt in September! The odd thing is that the more I walk, the less symptoms I have. I started out by walking around the block (that was ****) and now I am up to 4 miles per day with a couple breaks in between (and throw in a couple flights of stairs for fun. lol) I also noticed that when I took the florinef and the midodrine I got even more lightheaded. So I have stopped all medications and I am feeling so much better, but the pots flares can still knock me back a fews days. -Ryan
  9. Lieze, Those definitely sound like PVC's. I get them all the time, sometimes 20 a day and I know many others here have many more per day. For me it seems that stress can trigger them and other times they come out of nowhere. I used to panic when I would have one, and then I would get multiple in a row. It scared me to death. Definitely check out doing a 24 hour holter monitor. It totally put my mind at ease. They still take me by surprise when I have them, but I just try my best to ignore them. Oh, and I found this on another website: PVC's can be caused by lack of blood in the heart causing hard beats and PVC's: "With inadequate filling of the heart's left ventricle and abnormal function of the alpha and beta adrenergic systems, it is no wonder that strange and irregular heart beats (palpitations) are a universal symptom of POTS. These are often referred to as ectopic heartbeats, with frequent premature heartbeats the most common aberration reported." I hope this helps. Here is the link to the page I found. It is a good read. --Ryan
  10. Hi Naomi, I to have PVC's and pressure in my chest. My holter monitor also showed sinus tachy and 5 PVC's. I usually get the PVC's when my digestion gets all out of wack or when I have bad indigestion. Sometimes I can get 20 a day and other times they wont happen for weeks. I talked to my cardio about the chest pressure. She mentioned that it could be from pressure differences in the heart chambers. So I did some research and found this: "The current prevailing theory is that the heart pain associated with POTS is predominately non-ischemic, but further research may alter this perception. It is believed the left sided heart pain so common among POTS sufferers is due to differences in heart chamber pressures, abnormal heart wall motions, and/or nerve damage. It is not related to common angina which is usually caused by blocked arteries cutting off the supply of blood to the heart. While uncomfortable and debilitating, this left sided heart pain is not believed to be immediately life threatening." Also, the PVC's can be caused by lack of blood in the heart causing hard beats and PVC's: "With inadequate filling of the heart's left ventricle and abnormal function of the alpha and beta adrenergic systems, it is no wonder that strange and irregular heart beats (palpitations) are a universal symptom of POTS. These are often referred to as ectopic heartbeats, with frequent premature heartbeats the most common aberration reported." I hope this helps. Here is the link to the page I found. It is a good read. --Ryan
  11. Hi everyone, I know that neck pain is common with POTS, but I have had back neck pain on the right side and then this morning I woke up and my vein was engorged and you can see it through my neck and it is still there. The area is also a little tender. My doctors are all confused! Ugh! I was just curious if any of you guys have this issue? Thanks, Ryan
  12. Hi everyone! After a long 6 months and dozens of doctors later (my heart goes out to those who waited years and went through dozens of doctors), I found a doctor who was able to diagnosis me with POTS today. What a relief! I am so glad that I found this site, otherwise I would still be trying to figure things out. Thank you all for your support and continued support. It's wonderful to know that I have so many supporters. Now its on for the 24 hour urine sample to get more specifics. Oh, my doctor also wants me to try coreg CR.. anybody try it? Thanks everyone, Ryan
  13. Hello everyone, Let me start by first saying that I am so glad that I found this site. It is wonderful to know that others out there! My name is Ryan and I am 25 year old male "in search" of a diagnosis, however the doctors are getting "close." They believe that is does have something to do with my ANS, but they all just have that "I have no clue" looks are their faces! I am going to a specialist tomorrow and I am hoping my search will be over. *fingers crossed* I would like to share my road to diagnosis hoping that it will help others. Lets start from the top. It began when I was watching a particularly good episode of Oprah about a women with 20 different personalities! (some very crazy stuff). I got up to get a drink of water and the next thing I know my heart was racing out of control and beating REALLY hard. I thought I was having a heart attack. I didn't call 911 cause I have had panic attacks before but this was intense. I thought I was going to die. Thankfully I had family around me and I got through it and felt fine the rest of the day. The next morning however, I felt completely "off". My vision felt funny and I was weak and dizzy. Since that day, my symptoms have slowly gotten worse to the point where I am no long able to work. I can barely stand for more than an hour let alone 10 hours at work. My struggle to determine what was wrong with me began at my first doctors appointment a week later. Guess what? I had anxiety! Imagine that. I even believed it. I started with herbal remedies and with no help went to prescriptions. Then it hit me that I am feeling anxious BECAUSE of my symptoms! More doctors visits later they still wanted to call it anxiety. I so wanted to believe them. I wanted it all to go away. I wanted to feel normal again. But, I didn't. I then had a couple more "panic attacks" which landed me in the emergency room. I was waiting at one for 12 hours! That was **** on earth! "Vitals look good, just anxiety." I knew these weren't panic attacks. They were all symptomatic of one, but there was NO PANIC. I don't know if that makes any sense, but that is the best way I can describe it. Soon thereafter, I began having bad palpitations and plenty of PVC's. I know many of you can relate to how scary those feel even though you have had hundreds of them. I went to a cardiologist, had a 24 hour holter monitor and then soon after a 30 day event monitor. The holter showed sinus tach and the event showed sinus with occasional PSVT. Diagnosis? ANXIETY! Thats when I put my foot down and demanded the cardiologist to do more tests. FINALLY, I was set for a tilt table. Oh my goodness, I would never EVER do that test again. "I'm sorry Ryan, we need your heart to go faster, here's a drug to do that!" My heart felt like it was going to explode. After the test, the doctor said, "The test is inconclusive, come see me in 3 weeks."(Come to find out he was going on vacation, ugh!) I lost it. I just began to cry. Every doctor was ignoring me! That's when I did some research and came across POTS. I had most of the symptoms. I called my cardiologist and demanded that I know why my test was inconclusive and FOR WHAT? Come to find out, he thought it was POTS, but my heart rate "didn't increase enough" so he ruled it out and that I MAY have it i was just having a "good day"! "Excuse me, would you like to check my heart rate when I first stand up in the morning?" So that's where I am at now. I am getting a second opinion from another cardiologist who sees patients with pots tomorrow. I hear she is excellent. SO far it has been about 6 months since my initial symptoms. Let me just say that my heart goes out to all of you guys who have gone threw heck and back through dozens of doctors and YEARS of frustration on getting a diagnosis. I am sorry for the long post, but I just had to get it out. Thanks to all for listening to me rant. Ryan
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