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jackiemxoxo

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Everything posted by jackiemxoxo

  1. Claire, those are the tests that I had done when I was there. The most important is that breathing test because they can tell a lot from that test. For example, my heart rate overcompensates when it comes to the valsalva maneuver and I am experiencing too much sympathetic output (causing the pupil dilation, tachycardia, etc.) Also, as you go there more you will have comparisons of how you are doing now versus 6 months ago. I think it is good you are checking up with the neuro too though because it cannot hurt to have more opinions. Also, the neuro may be more helpful in terms of treatment. I hope you do get some answers with what is causing all your symptoms and feel better!
  2. I understand what you mean because I feel better after sitting or lying down and my heart rate goes back to 80's. I usually function with a 120-130 heart rate upon standing because I do not want to be on betablockers unless I need to because they make me soo tired. When I do have bad episodes my heart rate goes up even higher and that is when I end up in bed most of the day. I try not to test my numbers that frequently only when I am feeling really bad because I think I can psych myself out when I read my pulse is so high. As long as I am functional it is not that big a deal. Showers are the worst I think because of the heat and I often need to rest after one too. The numbers you gave look good though so I wonder if your symptoms could be due to something else or a contributing factor? Anyway, good luck with your measurements. I would try doing these at different times of the day too like morning and night and see if you feel any difference. Also, I should mention that my blood pressure is stabilizing and even running a little high lately. I notice that when it runs low, I feel like crap regardless of my heart rate. I tend to feel better when my blood pressure is not so erratic.
  3. Usually symptoms present very suddenly and can land you in the hospital. When I got sick, it started with my heart then my stomach and then everything went haywire. But you're right I did not have a viral illness they could treat promptly but getting the treatment sooner than later can prevent more damage to the autonomic nervous system. I mean viral such as illnesses like Guillain-Barre or another autoimmune virus that can be helped with plasmaphareses or IVIG. It sounds like your symptoms have been gradual and usually with dysautonomia for the most part all you can do is treat the symptoms. If I were in your position I would see how sick you get and if you need to find a diagnosis. If you are managing your symptoms then that is half the battle. Most people i think need to find a diagnosis because they are so sick that they want to know the cause so they can get treated. I hope this makes sense. Dysautonomia can be caused by so many different things though that I was just bringing up one of them being a virus. It could also be caused by genetics, lyme, diabetes mellitus, pregnancy, trauma, etc... So these are just some things to keep in mind.
  4. The only time I think a diagnosis is critical is when there is a viral or autoimmune link because treating those the sooner the better. But it usually takes months before you really know all your symptoms and can find an actual doctor who understands dysautonomia. I think starting the lexapro is a good idea too because it still works on your sympathetic and parasympathetic systems. Also, when i first came down with stomach symptoms my endoscopy indicated i was suggestive for celiac but my bloodwork came back negative at the time. I still continued to eat gluten for about a year and had the worst IBS ever. I previously had h.pylori and c.diff so I kept contributing it to the after effects of that. When a doctor suggested i cut out gluten after about a month I no longer had IBS and felt much better. Now, another doctor is testing for celiac again but also mentioned that because I had h.pylori and c.diff that these can change the gut flora in your stomach possibly causing gluten intolerance. He was especially concerned if i took the h.pylori antibiotics saying antibiotics can do that.(I never did for fear of the c.diff coming back but i know many of you have taken antibiotics for this). I am just mentioning this because I think you will find relief getting your stomach symptoms under control and exploring the possible cause of that depending on how bad they are.
  5. I have had an endoscopy before which showed bad gastritis and suggestive celiac and I end up getting my gallbladder removed which i probably did not need to but it was not working due to the dysautonomia. Having been put under for both of these procedures wreaked havoc on my body because it slows everything down and made me feel worse. After recovering, I was still having major stomach issues so the GI doc recommended the same thing for me another endoscopy and colonoscopy. I decided to wait it out because I did not want to be put under and switching to a gluten free diet helped my symptoms. The GI doc was very knowledgeable though and suggested prophfol(sp?) as well which I think if you decide to have this done is the way to go. However, if you are just having swallowing problems try to see if they can figure out what is wrong with a barium swallow test or possibly the gastric emptying studying (these are what diagnosed my gastroparesis when i had it, I could not eat anything solid for 3 months). Also, you might want to research that camera pill you swallow which is similar to an endoscopy but you do not have to be put under. I was trying to go that route because I was too afraid of being put under as well. Well that is input on this topic and hopefully it helps. I can really relate to not wanting to be put under and hopefully you find what will work best for you.
  6. I go to Dr. Vinik as well! You are in good hands because he thoroughly checks out everything. My case was especially tough because he said he had never seen dysautonomia as severe as mine when I first got sick two years ago. Luckily, I have been doing much better and he thinks mine was a neurotropic virus but is still investigating other issues. I like Dr. Vinik because he is careful about which medications to use and how they work. You will probably end up doing the Cannes test which is a breathing test which measures your valsalva maneuver and heart rate which is simple. My pupils are very sluggish as well. All the test I have taken there are non-invasive. I now see him about every 6 months which is helpful. Remember to checkup on your results though especially if you start feeling sicker because they are not always that prompt at getting them back to you (Just being honest). But yeah, I think you are on the right track to getting some answers which is good.
  7. yes, did the urine collection too.. I was negative. Also did urine collection for pheochromocytoma, also negative.
  8. Thanks for the responses. It is good to know that the symptoms are for the most part benign. Kim- I have heard a lot of people have success with bystolic. It is something I might bring up if I have to be on a medication again if my flare ups get worse. I am trying not be on anything because I am so sensitive to medications that most of the side effects are worse then the actual help they provide.
  9. So I finally had my 6 month checkup with my neuroendocrinologist. He did tests on me back in october when I was feeling really sick but did not have time to meet with me until now. I told him how I had now switched to a gluten free diet and the positive sjogrens test I had when I saw a hematologist back in october because of the hives I was having. He is now retesting me again for sjogrens (to make sure its positive) and retesting celiac (prob wont be positive bc im not eating gluten) to see what antibodies if any my body is making. When I first got sick with dysautonomia 2 years ago he was positive that it was not autoimmune because he did so many tests that came back negative. Now, he is still thinking it is a viral cause and I am having residuals from what the virus did but also entertaining an autoimmune link. My breathing tests from october are still showing that my valsalva maneuvers are abnormal and my body is having too much sympathetic activity. He thought about putting me back on a beta blocker but thinks it will suppress too much parasympathetic activity as well so unless I am feeling really crappy then no meds for me. They also listened to my heart and told me I probably have Mitral Valve Prolapse and this explains why I am having that sharp chest pain. He told me it is normal to feel anxious, have chest pain, and even feel short of breathe but as long as nothing is structurally wrong then it is not harming me. I feel better knowing why I am having this chest pain but it still scares the heck out of me when it happens. Do any of you have MVP? Is there anything you notice that makes the chest pain worse or better? Anyway, I feel better that I am one step closer to figuring out the possible cause of why I get sick but it still does not help the symptoms.
  10. I would ask the doctor if it was possible to lower the dose or not. I know some medications you can't but I know I am sensitive to some medications so I felt wired and jittery when I would take them. When I took paxil a year ago it helped but I would have restless leg and feel jittery. The doctor lowered the dose and it helped out a lot. If its not possible, you will have to weigh the pros and cons. Sometimes you can adjust but otherwise it might drive you crazy.
  11. I am glad you asked this question because it is one I have been wondering about myself. I am 27 and my husband and I have been talking about having kids for the last couple of months. I have been really worried about the risks with pots and pregnancy. My doctor said I should be fine but I still sometimes question if he really knows about my sickness. We plan to start trying next year and have even taken into consideration the seasons and trying not to be pregnant during very hot months. I am also doing my master's online so it will def be a challenge so we will see how that goes. Good luck on your decisions.
  12. yes, those articles are very interesting and hopefully eventually they will find a link. I was never sick in childhood or anything so I think my dysautonomia is virus related plus the neuroendocrinologist I go to diagnosed my case as a neurotropic virus but he did not know specifics. I agree that a lot of doctors do not think outside the box and many of them do not understand pots or dysautonomia. When I first got sick I went to the ER twice and the doctors kept saying it was panic but my dad knew otherwise so we kept investigating. Many doctors have never heard of dysautonomia so they will not be familiar with the symptoms and will try to say you have something else. It is very important to be persistent no matter how crazy they think you are.
  13. I had bad chicken pox when I was little and also had the varicella vaccine. I have not had shingles but interestingly enough when I first got sick with dysautonomia my stepmom and her friend came down with shingles at my dad's house where I was staying at the time. They say shingles cannot be spread but they both had it and took antivirals and got better. I never got it but I got really sick with my autonomic nervous system going all crazy. My dad (who is a internist/doctor) still questions whether me getting sick was related to them getting shingles. He thinks I could have gotten it but instead of presenting like a rash it could have presented like an autonomic reaction. He told this to a doctor a vanderbuilt who was consulting with my family doctor and they took note of it. Just thought I would throw this out there cause it related to your topic.
  14. I had plasmapheresis when I first got sick which is similar to IVIG but less risky because plasma is taken from less donors. I agree that it should only be used for autoimmune causes (which they have a test for- i forget what it is called but it has a long name and is expensive). Also, the closer you get the treatment from when you are first sick, the better the results. I think this is still a controversial issue but can work for some who have an autoimmune cause and get sick because it can reverse the effects of your body attacking itself. In my experience, it was invasive because of the cath they had to put it and it made me feel sick. It made me pool out of control and I stopped by the 4th treatment. My mom thinks it helped but the doctor said later that it did not help because my dysautonomia is not autoimmune in origin. Good luck with finding out info about it but def do your research cause like others mentioned it is not a quick fix or easy procedure.
  15. I am glad you asked this question because I have been wondering it too. When I first got sick over a year ago, the doctors were the same way with me blaming it on panic and it took awhile to diagnose. I found the cardiologists to be the most unhelpful which was unfortunate because the heart rate is most measurable symptom of POTS. When I finally found a cardiologist that knew what POTS was it became easier. Lately, I have been feeling sharp chest pains that do not last long and pain in my fingers. I have been wondering what this is and if it is normal. I had a holter monitor about 2 months ago which just showed tachycardia but nothing too worrisome. It is hard because the monitor does not always catch your pain but hopefully you will have better luck. Update us if you find out any answers about this pain! Good luck!
  16. Another source of good protein is quinoa. They make quinoa pasta as well as the grain. I think it is similar to cous cous and the pasta tastes good. You could also add fish to your diet which adds healthy fat and might help. Good luck!
  17. Bleeding gums happened to me when I first got sick because of a side effect of one of the medications I was taking (I asked a doctor about this and he told me). This does not happen to me anymore because I am no longer on them but make sure to check your medications side effects! (Also, I do not remember which one it was that was doing it)
  18. I think that is an interesting study you posted Sue. I just found out I was vitamin d deficient and gluten intolerant 3 months ago and have been feeling better on a gluten free diet and vitamin supplements. I think this is an interesting article on Vitamin D as well. http://gluten-intolerance-symptoms.com/does-early-vitamin-d-deficiency-and-intestinal-flora-cause-celiac-disease/
  19. I would say do it if you think it will help but not if you do not feel comfortable going through with it. I tested low positive for sjogren's a month ago and Im going to be tested again 3 months to see if it is still positive but i do not think it is the answer to all my problems. If anything, I know it is why I need eye drops and do not sweat as much but thats about it. In my opinion, i dont think it causes a lot of the big symptoms of dysautonomia because it is just attacking moisture producing glands. If you are having severe dry mouth or eyes though then it might be worth it.. I would find out what they would do to treat it first before going through that procedure just for a diagnosis.
  20. yes, I feel much worse when I am hungry or tired. I know exactly what you mean and I dont know why it happens.
  21. yes, my symptoms came on with a bang. In Jan of 2010 i went to a movie with my sister and my heart started racing like nothing I had ever felt. I went to the ER and they kept saying it was panic but my dad is a doctor and knew otherwise but he didn't know what it was. Then, a few weeks later the stomach symptoms and pain started. I ended up getting my gallbladder removed which seemed to make everything worse. I got to the point where I could not eat anything (gastroparesis) but ensure and was still in awful pain. I had an endoscopy, stomach motility tests which showed bad gastritis, hiatal hernia and gastroparesis. the episodes continued to get worse until about the end of february where i ended up in the ER. They noticed how everytime I got up to go to the bathroom my heart rate would increase. An electrophysiologist thought I had atrial tachycardia and I needed an ablation ( I did not end up getting). Luckily, another doctor my dad knew questioned dysautonomia and sent me to an endocrinologist. He tested me and told me I had severe dysautonomia but he did not know the cause. I ended up in the ER again because of c.diff and this set off all the symptoms really bad. I was even in the ICU for 4 days because I could not breathe. My legs were pooling so bad that when I sat up it felt like the blood was rushing to my feet and I would get light headed. I ended up getting plasmapharesis cause they thought it would help but it did not really do anything for me because i would later find out mine was not autoimmune. I was basically in a supine position for 2 weeks straight. They tested me for everything but could not find a cause. My parents talked to dr. robertson at vanderbilt and he guided the physician seeing my case through the process of what medications to give me. He said vanderbilt has a long wait schedule and they usually dont see patients until this happens multiple times. He was very kind and helpful though. I ended up getting better after being put on medications like paxil, florinef, inderal, and others along with just time. I did not truly feel better til about 5 months later. The endocrinologist I still see said it was caused by a neurotropic virus because of the sudden onset of symptoms. He said the virus made my autonomic system go haywire. I did really well for about a year and then got sick again but no where near as bad as the first onset of symptoms. I still question if his diagnosis is right but there aren't too many physicians in my area that are knowledgeable about dysautonomia. Also, i did not feel sick when it started as some people due with flu like symptoms, i felt fine until my heart started racing. And before Jan 2010 i never experienced any kind of these symptoms or had any problems. I never even had a hospital stay other than getting my tonsils removed.
  22. yes, I had c-diff when I first got sick with dysautonomia after having my gallbladder removed in the hospital. I was one of the unlucky few that did not respond the flagyl and it made me throw up and my legs numb. I did not know those were side effects at the time (I thought it was the pots) so be careful if you are feeling very nauseous. I ended up switching the vancomyocin which was much better and eradicated the c-diff faster. The only downside is it is more expensive. When I had c-diff, it made me really hypovolemic from the diarrhea which was causing me to almost faint. so be very careful and drink lots of fluids. If your c-diff gets really bad, you will need the IV fluids because dehydration can be dangerous. c-diff is a nasty bug that can reoccur when you take any other antibiotic in the future so always keep that in mind. I hope yours clear up and you get past it! Also, the best probiotic i found was florastor (helped to stop diarrhea a lot) and I also had post infectious ibs for about 6-8 mths after c-diff.
  23. -Tachycardia upon standing -Dry eyes, skin, lips, etc… -Heat and cold intolerance -chest pain -trouble breathing during bad episodes -diarrhea & IBS -constipation -GERD -dilated pupils -exercise intolerance -hiatal hernia -flushing -fatigue -hypersensitivity to noise, smells, medications -gluten intolerance -high and low BP -dizziness
  24. I have been gluten free for about 6 weeks now and it seems to be helping with a lot of the stomach problems I was having. I went to a hematologist and he said my vitamin d levels were low and he thought I should do gluten free even if the tests came back negative. I think I have more energy as well but still hard to exercise due to high heart rate. When I first started the gluten free diet (which im still pretty new) I did not think I saw a difference but after being on it for a longer, I think I am going to stick with it. Also, I think if you up your intake of fruits and veggies it can make anyone feel better.
  25. yes, it means you have a lot of sympathetic activity. When I was in the hospital they would continually use a pen light to check my pupils and they wouldn't constrict. They have gotten a lot better but mine are still always on the larger side. I really hate fluorescent lighting because of this and always wear sunglasses.
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