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sue1234

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Everything posted by sue1234

  1. That is wonderful news! Yay for Tyler!
  2. So, it seems others don't have a big problem with cognitive issues like me? If that is the case, then I'm to the point that I wonder if my cognitive decline isn't related to my POTS. I have had years of low blood sugar, so that could be a culprit, too. Or, hypoglycemia AND POTS, a double whammy!
  3. When I read your story, it read like I could have written it. I do say that after I get out of bed, I still need all morning to "wake up". I cannot wake before like 6 a.m. or I feel so dizzy headed. I do best when I can wake naturally, whether at 6 a.m. or 7:30 a.m. Then I have to lay around for about 20 minutes for my body to feel ready to physically get out of bed. Otherwise I seem to vasodilate, with my hands and feet swelling and feel lightheaded. I sit all morning in my chair, watching news/tv or on the computer. I drink iced tea for caffeine purposes( helps have bowel movement and wake me up some). I have hypoglycemia issues, but only in the morning, also. I almost never have had hypoglycemia after about 3 p.m. I go through moments of heart racing, lightheadedness, full-head feeling, cold, hot, no energy and more. It is a moment by moment roller coaster all morning. Then, usually by 1:00 p.m., I can do something, like cook, etc., as I begin having a lot less of the morning issues. By night time, I don't have any normal energy, but my head feelings are significantly reduced, and I feel almost my new normal. I don't think I EVER feel my prePOTS normal! I wonder about cortisol, and whatever else has a diurnal pattern. I do know my cortisol is usually high (over the top of the normal range) in the morning, and has been for years. I don't know if that is pathologic or just a stress-reaction to what ever is going on in the morning.
  4. I was looking through various studies, and I saw this one on MS and cerebral hypoperfusion. http://www.nature.com/jcbfm/journal/v35/n9/abs/jcbfm2015131a.html Specifically, at the end, it says that hypoperfusion can cause the cognitive decline and fatigue in MS. Well, what about us POTS people that could potentially have hypoperfusion? Maybe that alone explains my issues with cognitive decline and fatigue. If anyone has access to the full article, can you see what their recommended treatment for increasing perfusion is? BTW, I have my most in-depth TTT coming up in a week, and it is supposed to measure cerebral perfusion during the test. I'm interested to see what it shows.
  5. My sitting is usually 75ish. M@t, have you had a cardiologist do a thorough work-up on you? My dad had a low heart rate similar to yours, and was sent to a cardiologist. They found that he actually had bigeminy. Can't remember the specifics, but his heart was actually beating twice what was registering, which brought it back up into a normal range. Not saying bigeminy in itself is normal, though.
  6. Doesn't orgasm increase dopamine? Maybe something to do with that?
  7. I asked because if I get up within 15 minutes of waking, I am somewhat lightheaded and can feel that my vessels aren't constricting to keep my blood flowing. That causes my POTS symptoms to be at their height. I literally have to lay around for at least 20 minutes after waking, then get up. It's like something doesn't kick in until I've been awake for a while. I also asked because I was wondering about low cortisol levels. Have you ever had your levels tested?
  8. Does that feeling of nausea, etc. happen at different times of the day? Or, for instance, you say if you only get 4 hours of sleep, so does that mean it happens at 3 a.m.? Or anytime during the day?
  9. I'm on thyroid meds and have them checked a few times a year. My levels are in a good zone. I remember before POTS, and before being on thyroid meds, my normal daily temp would be in the 99F range.
  10. Thanks everyone! I am finally rid of that malaise feeling. It lasted a good two weeks. I was soooooo worried I was getting a permanent case of CFS or something similar!! Interesting that it seems some of us don't get true fevers. That would make sense, if our vessels are having issues with constricting correctly.
  11. I used to drink beer in my younger years, then quit probably 20 years ago because I had begun a few meds and didn't want any interactions. So this past summer I decided I can drink beer again. Keep in mind, in my past I was a lightweight compared to others when drinking, so I didn't drink much. Well, I bought gluten free beer and began to drink one in the evening. One is 10 oz. Some evenings I would just get a big buzz. Other evenings it felt like I drank 3x what I really did. All of this off of 10 oz.!! I cannot handle any alcohol apparently. I'll admit just one night early on, I drank 2 beers over about a 2 hour period, and I almost had to hold myself up holding the walls!! I quit after 6 weeks. What I thought would be a nice way to relax like other people turned into me feeling out of sorts all evening. I guess maybe since we usually have a lower blood volume, it gets more concentrated?? That's just my own theory. Anyway, once again, no drinking for me.
  12. Thanks everyone! My normal temp also runs in the low-mid 97F. I temped this afternoon and one was 99F and the other was 98.5F. Definitely above my normals, which have even been in the 95F range on a few occasions. I took a half of a Tylenol, and I actually felt somewhat better within an hour! That kind of makes me think I have some illness.
  13. I've had POTS almost 10 years, and I haven't had a virus or bacterial infection in this time. In the last few days, I feel like I am sick. I feel like I have the flu, but with no respiratory symptoms. I just feel that severe malaise and heavy, weak muscle feeling. I don't have a fever, but know back when I was a "normal" person, this is what I would feel like if I had the flu or some heavy virus. I went to the doctor and am having labs in the morning. My doctor is testing me for mono and seeing what my morning cortisol is. I didn't know with our systems not working properly if we get fevers?????
  14. Katy, you are right. I can't expect people to see a problem, when that's how it has evolved due to my POTS issue. I would not know how to do it, though. Since POTS hit, anything that is remotely psychologically stressful makes my adrenals shoot immediate adrenaline. I mean, I can FEEL that release under the ribs! (just like when you have an almost-car-accident!) And because of it, I end up with the super racy heart, and then I feel like the room is spinning. I just don't know how to physically handle getting into something deep like that.
  15. Thanks so much everyone! I knew I wasn't alone in my feelings, and it was so nice to hear it from other POTsies. Y'all gave some great advice. I guess I should have explained what I can and have done , instead of what I can't do: I've pushed myself in the last couple of years, going from not being able to stand more than 5-10 minutes to now being able to stand up to 2 hours. That 2 hours is constant moving or sitting on my stool leaning forward. BUT, it is at our business, where I turn the a/c down low. What it is is I cook around the kitchen at our business(inspected), and I make freezer meals to sell at farmer's markets. Well, my husband sells at the markets, because I can't control the environment outside! But, if there is a day that I'm feeling worse, I don't cook. Days I'm feeling okay, I cook. It has been a good incentive for me to get out of my house and DO something! The only thing is when customers walk in, my husband takes care of them, as I just can't do customers. I don't have enough stand up time to stand around and chit-chat. I also don't feel like it because my heart is in the low 100s while I'm upright. This makes me short of breath, and I don't want to waste my upright time in idle chit-chat. It is all about the spoons!! Also, because I cook, I have and cook every holiday at my house for my kids and their significant others(nobody has invited us to theirs for a holiday). And, it has to be supper, because I don't function in the mornings. If I don't make the big events, such as graduations or baptisms, etc., I HAVE cooked or bought the food for the after event and we meet and eat there(if I go, depending on how I'm feeling). After the indoor farmer's market that I do go to on my good days, if we have food left over, sometimes we do bring it to my two kids that live in that town and visit for a few minutes. So, I guess I painted myself as not doing much other than sitting in my house. But, I can do limited things, just not sitting in restaurants, shopping, or anything that doesn't have air-conditioning. And, I cannot do socializing other than kids/family. As mentioned above, I just don't have the breath to do idle chit-chat with people I don't know well, because I cannot keep my side of the conversation going. In family get togethers, my husband loves to talk, so if I need to, I just sink back and let him entertain. My parents think I'm a hypochondriac because our illness is invisible. So, visiting with them is a stressor for me, as I tried explaining a few times how bad I can feel, but they really don't believe or care to understand it. So, for some reason, they rarely call or come see me, but I go visit them. Not enough, as I always feel guilty, but on Sundays when I'm feeling okay and my husband can drive me. Someone mentioned meds. When I do go somewhere that stresses me, I do either take a little Xanax that I normally only take to sleep, or, I take a little beta blocker to calm the system. I can't do that regularly, or I feel like a slug. So, finally, my point is I do stress myself physically to get out and do for my family. I just don't see any reciprocation. And it's not that I want them to DO for me, it's that I want to see them THINK of me and initiate visiting other than holidays or guilt-visits because they haven't been over since the last holiday. Once again, I appreciate you sharing that you might feel similar to what I feel regarding relationships. It's not easy, and I hate the way I feel because of it.
  16. Sounds like something you need to have thoroughly checked out by your neurologist. I know people with things like Chiari or spinal cord issues can have incontinence. Do you have something up in the brain or spinal cord that you are aware of?
  17. That is great! I know he wants to get some sense of a normal life back!
  18. I have had POTS for almost 10 years. It has left me unable to drive, and as most know, unable to do things such as outdoor activities(temperature problems), frequent family get togethers(adrenaline rushes too much leave me not wanting to socialize), shopping or going out to eat with family/friends(can't stand up long enough or sit long enough in a wheel chair or chair other than my recliner) and basically I can't do much because my body will not cooperate with a change in environment. So, the first 9 years I did fine. I have been patient with waiting for research, etc., to help with the POTS diagnosis. I have seen my fair share of doctors to help get to the bottom of what may have brought it on. So, in these years, I've lived with HOPE that eventually my issue will be sorted and something, somewhere will help. While all this is going on, my kids were middle teens, and they were busy being part of school activities, which I did make one sport a lot because it was in winter, which I can handle. To make a long story short, I missed a lot of what my kids/family did. I missed weddings in extended family, I missed my daughter's college graduation, and on and on. During all of this, I really went out of my way to put a smile on my face to them because I didn't want ANYONE to feel guilty that I couldn't participate. I wanted them to not feel burdened by me, and go on and live their life. I must mention that we really had a great family life, and no arguing or major disagreements as they grew up. Well, this year, I am feeling down as everyone is living their life and assuming I am all okay. I am definitely not a burden, as people rarely check in with me or even ask if we can get together. I'm beginning to feel resentment and slight depression, both of which have NEVER been in my vocabulary before, and I don't like feeling like this! How does everyone handle when people drop away because you haven't been a big part in their life? I can honestly say I haven't "driven" them away, I think it is just that they are used to not seeing me much(due to them, as I don't drive, but my husband does bring me when we can stop by). I think it is hard enough to have the physical condition to deal with, but to have the psychological aspect to now handle on top of it? That is quite a load!! I don't mean to be "Negative Nelly" here, but it's becoming overbearing! I've never really thought about it until I've had a chronic health issue, but I can assume many people with life-altering chronic health issues that drag on for years lose family/friends.
  19. Do you have hyperPOTS? I've had two doctors tell me I should not take an alpha blocker. My thinking is it "vasodilates", but then we don't have enough blood volume to keep that filled up so the heart rate increases to move more volume. Just a thought. One of my early doctors put me on an alpha blocker, and I had to lay on the couch until it wore off. My upright blood pressure had dropped to 70/40.
  20. I understand. I am switching dosage on my thyroid meds from 100 to 112(three days a week), and I could not handle the heat at all yesterday, which makes my limbs swell and in turn, makes me even more lightheaded. I wonder why your heart rate went down? Under normal circumstances, a higher dose of thyroid meds would cause an increase in heart rate. I KNOW we never have our bodies do anything the normal way though!! I hope it levels out soon!
  21. I personally don't take in extra salt. I do eat salty foods everyday, though. But I don't over salt by any means. I've read a few studies that really, really salty diets can contribute to stomach cancer, so I'm not going to force it.
  22. I get what you say about the "weird in the head". That is one of my most debilitating issues. Sometimes I feel like my brain is swollen or in a vice, but I have no headache or anything else with it. It makes me feel "floaty", no drive, less cognition and more. When being upright, I do get the peripheral pooling and the increase in heart rate and blood pressure, but the head thing is with me almost all the day, every day. In fact, it was really the first problem I had when POTS hit 9 years ago.
  23. I'm getting ready to have my 5th in 9 years. This one will be the most comprehensive I've ever had, measuring cerebral circulation and peripheral resistance among the usual things measured. Mine is scheduled for mid-November.
  24. I had an MRI a couple years into my POTS, and the neuro said I had narrowing of my spinal canal in the cervical area. I have no clue if that contributed. I know someone here who had cervical issues, had surgery a year or so ago, but the POTS was not improved.
  25. I'm pretty sure we have mold in our home. But, with no extra income to spend to have it tested and fixed, there's not much to do. I know, many would say how can you afford to live somewhere with mold? We just don't have any extra income to move or even rent. Our home is paid for. So, now I wonder about mold. But, I live where I'm sure many homes have mold, as I live in the south, with lots of humidity. I think if that was the case, we would see so many, many more people with POTS-type issues, and I don't know anyone that has my issues. So, I have no clue. Does mainstream medicine look for mold toxicity? Or, just holistic-type doctors?
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