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jackiemxoxo

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Everything posted by jackiemxoxo

  1. Claire, That's awesome news! I am glad that he was able to help you and that is good that you can keep us informed about the new testing center. I really do hope you find some answers soon!
  2. Mine started with tachycardia for about 2 weeks and then the gastric symptoms started until it went to gastroparesis. I did not know they were related at the time but then other symptoms started happening (no sweating, big pupils, trouble breathing, etc) and a doctor put the pieces together. I have gotten better.
  3. hello, my illness came on suddenly and was very debilitating 2 years ago. The doctors still think it is a viral cause. I was in the hospital for almost 3 months and i also thought I would completely deteriorate (1 week spent in ICU). However, after getting to my lowest point things started to look up. I am slowly getting better and lead a fairly normal life. I still have symptoms and do not feel as good as i did before getting sick but i do have relapses every now and then. In my opinion, do not freak yourself out by looking up the scariest possibilities without being diagnosed by a knowledgeable doctor. When I would google my symptoms, I would scare myself into thinking I had autonomic failure or other things that would come up. If you have a viral cause, the illness can be self limiting. Make sure you get help immediately because if the doctors find out it is autoimmune some things may be able to be done to reverse the symptoms (plasmapharesis, ivig, etc.) This illness can be very scary and anxiety and stress will only make it worse. So take a deep breath and find a good doctor close to you. Feel better!
  4. I hope you start to feel better. I know it can be miserable. I think it is a good idea you are doing the endo too because it will def tell you more. Also, if you are ever stuck in the hospital with this, I was once told by a GI doc that they can tell what you have by how much stool you are making (parasite, bug, etc). so it is just something to think about. Feel Better!
  5. very abrupt onset, I slowly improved over a period of time and now I have good and bad days.
  6. I agree with what the others mentions and would also suggest specifically the probiotic Florastor. It is usually more pricey (you can also find a coupon online if you do a search) but it works better than the others and my GI doctor said it helps fight infections better. I used it with reoccurent C.diff infections and noticed it did work better than the others. Also, you might want to find out if any specific foods make it worse. I hope you feel better soon!
  7. one possibility is that the antihistamines are stopping your bodies reaction to producing histamines which is causing a reaction. The production of histamines could be caused by an allergy which is exacerbating your pots symptoms. You should tell your doctors how benadryl helps your pots symptoms and get their opinion on the matter. Some people use zyrtec and xyzal but these seem to make my tachycardia worse. I think the fact that your reacting to benadryl is an important finding though.
  8. I haven't taken lexapro in years but it did help with some of my dysautonomia symptoms when i would have bad flare ups. At first, I would experience side effects of the medication and my doctor told me to take it at night instead of the morning and this seemed to help some. You might want to ask your doctor if it would help you to change the time you're taking it especially if you get light headed at night. Only a suggestion but it could help.
  9. I agree. I notice them while trying to sleep especially on my left side.
  10. I think gastroparesis and motility issues can vary. I know I could not eat anything solid for 3 months and wondered if it would ever go away but eventually it did and I can eat normally now. I also contracted c.diff at the time so this might have changed my intestinal flora. The doctor told me 6-8 months to recover from gastroparesis but for me it did not take that long. They also did not know why it happened. I know some people get worse though. Eliminating gluten from my diet helped for a while though. I would recommend seeing what foods bother your stomach more than others and refraining from those.
  11. yea, I met the PA for the first time at my last checkup. He does seem really helpful, before it was always just a nurse and Vinik. I had that test on my feet too, one was abnormal but I do not think it is bad enough to pursue treatment. I forgot what the treatment even was he used some big terms. Also, one of my sjogrens blood work came back positive and I think the last one did not. So, I think I have it because I have to use eyedrops but I think mine is mild. I would def pursue all the autoimmune causes although the tests dont always come up positive even though you may have an autoimmune component.
  12. Hey claire, Im glad you got to get another test and hopefully some answers. I know that when I see Vinik, he never says "pots" either but always autonomic neuropathy and dysautonomia. Did he at least classify you with these? The most important thing is that you find someone who will recommend some treatments as well as causes.
  13. Yes, I also get these sharp stomach pains and they are very hard to relieve. I tried to figure out for awhile what triggered them but I think they are just related to dysautonomia. Although I do go through phases where they are worse then get better. I think my GI symptoms are the worst thing about dysautonomia besides tachycardia. Hopefully you can find a GI doc that puts you on something that can give you relief. I have tried everything but I still get the pains.
  14. Julie- thanks for writing such a detailed post, I feel like my symptoms were very similar to yours when I first got sick. How did your symptoms present? I had also contracted c.diff at the time though so the pooling in my gut was so severe that it was making me faint. Luckily, the doctor put me on ocreotide (Sandostatin) and I could literally feel the blood rush out from my stomach to my lungs and head. I have gotten much better that I do not need it anymore and eventually I could not feel a difference but hopefully it will work for you.
  15. That is awesome that your standing heart rate is lower. I have been doing the stationary bike which I felt has built up my endurance but I hope to eventually jog like you can.
  16. Inderal was one of the only medications I tolerated well and if ever have to be on a beta blocker again it would probably be this one. I was so sensitive to it that I literally broke it up and took 5mg, 10mg, 10mg, and then 5mg throughout the day. This is not a medication I would stop taking or take when needed because you will have rebound tachycardia! Eventually though I felt like it was making me too tired and my tachycardia is not as severe as it used to be. I think the key to this medication is finding the correct dosage that works for you so good luck!
  17. I think an endoscopy would be a helpful start. Gastic emptying study might be good too if they think it is gastroparesis. Are they treating the acid reflux because this could be making him nauseated as well? I had gastroparesis for 3 months and it was so bad that I was not absorbing nutrients or medicines. I had to get the prevacid solutabs. I was only able to drink ensure but the doctor said as long as I was drinking 3 a day then I would be ok. Thankfully it improved within a couple of months. I would try different medications but monitor him to see what works. I tried a tiny bit of reglan but it started hurting my bladder so i took benadryl and it reversed the reaction. I also tried librax, mylanta, belladonna, nexium, prevacid and whatever helped. I once heard a doctor say gastroparesis can be a neurological condition which most GI doctors do not know, so you might want to investigate this as well.
  18. I got hives from zoloft all over my arms and back. However, I never reacted to paxil or lexapro. Also got hives from coregard and toperol but not from inderal. Usually if you get them after taking a new medication, it is most def that medication. I think its absurd that your doctor made you try it again, they should have switched you to something else that you can tolerate.
  19. My symptoms always slowly subside when I am having good periods, they are never immediate. I usually go through days where I am noticing that I am feeling better and can do more stuff. Also, I will notice an increase in my energy levels. When I decline however, this can usually be immediate and triggered by hives or something unknown. I usually will have some bad days during good periods too but they arent as bad as laying on the couch all day.
  20. From my understanding and to put it in more simple terms- autonomic neuropathy has to do with the involuntary systems of your body being out of wack (heart rate, digestion, breathing, etc). small fiber peripheral neuropathy has to do more with skin sensations such as burning, numbness, tickling, or not being able to feel in certain areas. It seems that people with POTS can have both but not always. I know my problems are mostly autonomic neuropathy but they are always checking for small fiber as well. I think autonomic can affect small fiber because of the lack of sweating and damage to those nerves or something like that. There are certain tests that are specific to small fiber neuropathy such as the QSART test that you could look into if it might be small fiber neuropathy.
  21. Hello, to me it sounds as though you are lacking a strong support system more than anything. I can only imagine how hard it would have been to deal with this illness alone and even with support it can be frustrating. I think lately I have been pretty functional and I take the good with the bad. I might sometimes push myself more than I should but I do not want to miss out on everything going on around me. The most frustrating part for me is never feeling as good as I did before I got sick but I am thankful that I am not as sick as I was. I think you just have to take it day by day and not compare yourself to healthy people that are capable of doing a lot more. I always tell myself it could always be worse and I want to keep pursuing my dreams in life even if they are going to take longer because I am sick. The treatments for me seem to have side effects that make me feel worse then no treatment. I still go to a doctor every 6 months to find out my progress and he is still pursuing a cause but other than that I just try to live life and not get too stressed out because it makes every symptom worse. When I am having a rough day, I think about my hardest moment in the hospital and then I don't feel so bad anymore. Hopefully you find more supportive people around you and keep your head up!
  22. I agree with Trach who said temperature dysregulation is part of the dysautonomia. When I first got sick my temp was always around 94-95. I would usually get chills though and needed to be covered in warm blankets as well. I think it switches though between chills and becoming so hot and flushing. I think part of this is because the body cannot warm itself or cool itself properly and might be why your son feels warm. I also agree with the person who said that you can have a fever even if your body temp is around normal 97-98. I was feeling so sick one day and my temp was only 98 and I did not know what was making me feel so horrible. My dad thought I might have a fever from my other symptoms and after he gave me tylenol, I felt incredible relief. I did not think I could have a fever with a temp so low but that was def what it was.
  23. I took flagyl when I was sick two years ago from c.diff. Flagyl made me feel worse, I was only on it for 5 days but was throwing up and could not feel my feet. The doctor switched me to vancomyocin and those symptoms subsided. I do not think it was the cause of my autonomic dysfunction (because i already had symptoms prior) but it def made things worse. That is an interesting article though!
  24. Yes, I do the breathing test every time. The first time I came in that is how they found how severe my dysautonomia was, and how it has improved. I understand what you mean about wanting to show extremes. When you discuss the test with them tell them how they did not test you sitting up and standing so they know that. Hopefully it will still show though because you did the valsalva maneuver and everything else. I did the sudoscan once before and it came back normal. I did that test where they hook electrodes to your feet and one of mine came back abnormal but they did not seem too concerned about it. I think it is good they took all the blood tests because they are thoroughly checking you for what could be causing all your symptoms. I hope you do find some answers otherwise keep searching and see that neuro. Hopefully they will tell you how to manage your symptoms which is the most important thing. keep us updated
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