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Hope

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Everything posted by Hope

  1. I hope you find relief from the Linzess. I'm so glad you are posting about this. My husband has suffered for years like this, but his GI doc can never find anything. They have never in 20 years had him go for a Gastric Emptying Scan nor did we know one existed until I read it here. Needless to say he is going to ask his GI for this test! Thank you so much!
  2. For Meniere's, my ENT did blood work to see what kind of "old viruses" were lingering in my blood system that could cause it. (I had 4) He had me try to walk a straight line with my eyes shut (yeah right, I can't even do it with my eyes open!). He did a hearing test. He sent me for an ENG, and an MRI although I didn't have enough nerve to do the MRI until last fall when my neurologist sent me. At the time the ENT diagnosed me in the 90's, he put me on a very low-salt diet that got rid of the ringing and most of being off-balance, but now... I need salt! So I ring, and I am off balance but it beats passing out or feeling faint. I hope you get some answers. I think not knowing what your dealing with is the worst part of being sick! I'm still trying to find somebody to look at my autoimmune issues...sooner or later. I wish you well!
  3. I'm sorry you are feeling so badly. Have you talked to your doctor about maybe switching your medication to something else to see if you feel better? I took a different beta blocker before Metoprolol (I can't remember the name of it now), and that gave me bad headaches so they switched me and it took care of the headache situation. Obviously, that won't take care of all your problems, but if you are feeling worse after you take them, maybe they aren't the right ones for you. As far as fear, I deal with it by praying. Hopefully after the MRI, MRA and heart monitor, you will have a better picture of what is going on. As far as not presenting like most POTS, it seems so many doctors don't recognize how people do present with it. I hope you get answers soon. Hang in there.
  4. Yes, this happens to me sometimes also. It used to be a constant daily thing when I was real bad. My temp would go up in the morning (not high) and then come down in the afternoon when I was less symptomatic. Just like all the rest of the deregulation in my body, I just figure my temperature is not being regulated very well by my autonomic nervous system.
  5. Ice chips maybe? Or a popsicle. Those would go down slower than a drink.
  6. I'm not in Florida, just wondering how a support group of this nature would work? I would like one where I live also, but I can't even imagine being able to get there. I'm wondering about being Skyped in to one maybe?
  7. I love the hospital pic. I'm sure all here can identify with that one!
  8. Sorry to hear that Bebe. If it were me, I would definitely tell the doctor and tell them you want a tilt table test for her so they can try to get it under control before it goes spiraling out of control. Keep us posted.
  9. So glad to hear good news! I hope this puts you on the upswing and I hope that your son seeing Dr. G will save him a lot of grief that so many go through.
  10. Ok, I thought I would up date here. I had one of my wisdom teeth pulled 2 days ago finally! My husband went with me instead of anybody else because I feel the most secure with him. My cardiologist told me to only get one out at a time, so I got one with no "epi". It took 3 rounds of shots to finally get it numbed enough to pull, but it was very quick. The doctor was great. I am having more POTS symptoms since then, but not too bad. I'm back to using my cane, but hopefully not for long. The pain was not even bad enough to take my prescription. I have just taken extra strength Tylenol and luckily that has not bothered my breathing as it sometimes can. After I recover from this little worsening of my POTS-episode, I will schedule the other one need pulled.
  11. BJD, When I did the tilt table test I was at my worst that I've been. It was during an ER visit. A very kind and understanding doctor ordered it for me and had me stay the night. I didn't need the meds to enhance my symptoms. The gals giving me the test were discussing POTS before I was off the table. At that time I had never heard of POTS. Nobody seemed to know what was wrong with me until that moment. I remember the very kind woman looking down at me and saying "you've got a diagnosis now, they are going to be able to help you start feeling better". She told me her mother-in-law had it also so I guess she was familiar with it. God bless her and the ER doc who ordered the test. I will check back to see if you post your results.
  12. Thanks for the feedback, I appreciate it. My neurologist gave me a script for it but I haven't filled it yet. The more I hear, I think I will probably stay with the B-complex.
  13. My heart rate can be high when I'm sitting, and then of course gets higher when I stand. It's pretty good with my meds most of the time, but sometimes the meds just aren't that affective in some instances. For instance, I have a pussy willow tree in front of my porch and when the little fuzzy things are going to seed I must avoid it. If I sit out there or have the front windows open when they are in this stage, my heart rate will go up quite a bit. I don't have to have a runny, sneezing, stuffy nose to have this reaction. This happens with some other allergens also where there are no other signs on the outside that I am reacting, just on the inside. Mind you I was tested for tree pollen and didn't react to it in the office, but my primary doc agrees with me that it is the tree pollen doing it. Over stimulation from the sunlight or noise can also make my heart rate rise. I do benefit from wearing a mask outside to block the pollen and sunglasses. Usually, an hour outside is enough for me regardless of what I do.
  14. Hope

    Quote

    That is a nice quote.
  15. Thank you for posting. Another article for my binder. I don't have a medical background, so mostly what I understood was the last line! I have always thought mine was an autoimmune caused pots, and referring back to another article somebody posted here recently, I do believe if CFS is ever figured out so will my POTS be. It's great to see the research being done!
  16. This is a great thread! I love It! it gave me a chuckle this morning. Also, I like the idea of sending the background information ahead of a first doc visit.
  17. Alex, Wow, you're not kidding! I thought I was safe taking a cranberry supplement. It seemed so harmless, not like a prescription drug that I'm usually terrified of. Don't you know I got a reaction to it. I was sitting at my computer and started sweating and getting shaky. I got in the shower and it just got worse, bad shaking. It went on for about 2 hours. I drank a ton of water to try to wash it through quicker, and just sat on the couch with a hot pad until it subsided. I won't try that again!
  18. Tachy, The cardiologist I saw after my positive tilt table test told me I needed to "grow my heart". Interesting because I just had a whole slew of testing that showed I have a good heart, normal in size and was told "your heart is fine, something else is causing your heart to act this way. We just don't know what". I'm sure it's different for different people, but yeah, let's just give the "grow your heart" therapy to those whose hearts are deconditioned. I have a different cardiologist now that understands POTS better. I do wish I had a doctor that understands dysautonomia though.
  19. Between this and your other post, if it were me, I think I would consult another neurologist for a second opinion...if it were me. I have somebody very close to me with MS....yes, if it were me I wouldn't take that as a final answer.
  20. It's so frustrating isn't it? I try to keep in mind that that other children are in a lot worse situations. It doesn't make me feel any better about it, but it does help me keep perspective. I was asking almost the same thing on here about 1 week or 2 ago. It's so nice to have people here to support you. One thing I have done in the past year is hire somebody to come in and clean. At first it was every two weeks (and believe me, it wasn't enough), but now I have been able to do a little more so she comes once a month to do the deep cleaning. So between her and what I can do and what the kids do for chores, it's doable. My husband still gets frustrated with the house not being cleaner, but we can only do what we can do. I know I couldn't keep up with 3 year old though. My youngest is 9 so he doesn't need nor want constant supervision. I don't see any easy answers there unless you have family to help. I will keep you in my prayers.
  21. How frustrating! I've had my hormones tested and was told they were in normal limits. It never occurred to me that they may not be doing the right test. I have nothing in print to show me what they were either. I think I will look into that. I know for insurance purposes they have to use certain criteria to get a blood test done. Insurance companies have too much control over our health I believe. I hope on Monday that they do what you ask them to do. I wish you well.
  22. I'm with Joann, keep trying until you get answers. We are our own best advocates. After 2 years, I am finally not letting what doctors say to me dissuade me from getting answers. I just figure a person only knows what they know from either education or experience (including doctors), and they are only going to be as compassionate as their personality allows so if I don't agree or like what I hear or what the plan is, I move on. Other people have other answers and ideas and as long as I have good insurance I will keep forging ahead until I'm satisfied that I know what is going on with me. This is of course as my strength and energy allow Especially in the case of my cardiologist. I went from one guy basically telling me I wasn't doing enough to get better (my fault, really?), to another cardiologist that my neurologist sent me to that knows Dr. Grubb and follows all his research, and that cardiologist said I am making great progress and that he has patients that just don't get better. Support from a doctor that knows what they are doing is a wonderful thing! I also ditched my primary that kept telling me I needed to "see the psychiatrist for better drugs" because I was just having anxiety and I need to get up and walk! When I got the tilt table test the gals there told me I really needed a new primary that would listen to me. The results of course went to my previous primary and he called me and actually recognized that I had POTS but was still on the band wagon for Zoloft which I tried a few before that and didn't tolerate well. That was the last time I talked to him and I now have a WONDERFUL primary who actually has at least one other POTS patient. Don't get me wrong, I am not against psychiatric drugs if they help, but my situation does not call for it. Keep forging ahead!
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