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Everything posted by Birdlady

  1. Oh no that is not good. I always took my beta blocker in the morning. Perhaps the intrinsic sympathomimetic activity won't work well for you. If not, at least you know and can cross that off the list.
  2. That is good to know you aren't on a beta blocker. I don't think I have stomach emptying issues, but I could see that being an issue for some. I came off of my beta blocker to see if it helped. I do believe it helped slightly. Interestingly my A1C was good at the last test, but of course that was a year after I made a ton of changes. Insulin levels were not tested. I bought chex mix as a salty treat and now I won't be able to eat it anymore. Back to salads and pickles/olives for salt. Yeah I have completely cut out carb heavy meals. The spikes were just too high and those meals have always made me feel so sick (IST). I have not tested my urine, so that would be interesting to see. Obviously something is not right, but most doctors wouldn't consider this a problem. I searched the forum last year for high blood sugar/fasting and nothing really came up, so I am glad you posted this video. As you said it doesn't fit Type 1 or Type 2. I also found out I have osteoporosis in my 30's, so I'm waiting for research to show POTS causes that too.
  3. Nebivolol did not stop the shakiness and jittery feelings I get, so that one was not good for me personally. That one only blocks Beta 1. My heart rate would be 90, but I was super shaky and anxiety ridden. In the end it did not increase my postural time. Metoprolol and propranolol both just made me super tired and lowered my blood pressure. I felt like I was pushing against a wall on those two. Acebutolol stopped the jitters, lowered my heart rate and didn't make me quite as tired as the other two. It did help to increase my postural time. Sadly though I really think beta blockers in general were making my blood sugars worse, so I probably won't go back on them for a while unless an echo shows an enlarged heart or something like that. I got to figure out what is going on with my blood sugars.
  4. Oh my goodness. Thank you for posting this! I am having a terrible time with my glucose levels. Last year I bought a glucose meter and my fasting were in the 110's. I could not believe it. My entire life I had always been in the 70-80's fasting. I brought all of this to my doctors including a 200 reading after having potatoes. They both blew it off when I told them I was getting increasingly worried about it. They told me I'm too thin for that problem..../sigh! I've completely changed my diet the past year, but still having a terrible time. Edit: My fasting is down to 95-100, but I saw a 150 two days ago after eating a small salty snack. I thought the glucose issues were tied to my beta blocker as they can cause glucose issues too, but if it's just POTS, I would not be surprised at all.
  5. If you are doing well, then it may not be worth trialing a new med. It's possible that the acebutolol would act less on the lungs, but that is definitely a question for your doctor. Acebutolol kept my heart rates down and calmed my nerves, but it is no miracle drug by any means. I had tried metoprolol, propranolol, nebivolol and acebutolol. Acebutolol was the best one I found for myself. If I do go back on a beta blocker it will be that one.
  6. I was on acebutolol for many years. It was one of the better beta blockers I had been on. It is a slightly different beta blocker than the others. It has intrinsic sympathomimetic activity. https://en.wikipedia.org/wiki/Beta_blocker#Intrinsic_sympathomimetic_activity I stopped taking it after my blood sugars started to raise and I was worried it was playing a role in it.
  7. It could have been the vaccine, but would be hard to know for sure. Definitely report it, so they are aware of it. I had alopecia areata many years ago. For me the trigger was taking iodine. My body was very sick back then. It was before I knew I had POTS (2007), so I was doing a bunch of treatments to try to fix myself. It was probably the sickest time of my life. I hope that your spot stays small. If your dermatologist offered any treatment, I would consider it. My spot ended up taking half of the hair on my head. I couldn't wear a pony tail and had to flip my hair the other way to hide it. Thank goodness it all eventually grew back in my natural color over a course of a year. I've only had very small patches here or there near my neck over the years.
  8. I got my 2nd shot yesterday and I'm not having any symptoms from it aside from a sore arm (same with my 1st shot). I know everyone is different though, so not saying your experience will be the same as mine. I am honestly surprised. I prepared for the worst. I had extra groceries on hand in case I was too sick to get to the store this week or next. I guess we'll see if anything changes tonight or tomorrow. Edit: Still no issues the next morning. I haven't even had my normal fatigue.
  9. I've had signs since I was a very young girl, but it only affected me in certain environments or situations. At age 16 (I'm 30 now) is when it became significantly harder to live life, but I still managed to go to college and work for a few years. Then at age 21 is when I just could not keep going. I had to lay down at work which was not allowed and rumors started to spread. I just felt so miserable and started calling off or had my husband take me.. I totally stopped working at the end of the holiday season in 2005 and have not been able to work ever since. It's been really bad for about 9 years , but it's gotten worse after I got strep 2 years ago.
  10. One of my eye doc says I have something called convergence excess. I get a lot of headaches and eyestrain from it. I used to be an excellent reader, but now I lose my place all the time and get extremely tired.
  11. I have experienced what you are describing and for me it's been a pulled muscle in my chest wall. I seem to have a very weak chest wall and chest muscles. I pull them doing activities that seem unlikely to cause it and the pain can last a few weeks until it's healed. In fact I've been to the ER 2 times because of this!!
  12. I went in 2010 and was not impressed with how things were handled there. I told them I would never come back.
  13. I really don't know. I'm not the same person anymore and would probably ask God to use me in ministry.
  14. I also very much dislike my masticating juicer and would not recommend getting one. It works great... But they are a mess to clean up and you are left with a huge amount of pulp. Even if you add some of it back in to your drink, it's not blended at all and difficult to get down. Just the other day I was telling my husband, I wish we would have bought a blendtec years ago instead of the juicer we have. I too got reeled in with the claims that the slower juicers were better. Well if I don't use it, then I'm getting no nutrients. Cleaning out a single blender container is much easier than having to thoroughly clean out the entire plastic housing of the juicer, the auger and juice and pulp containers.
  15. I am the same way Sue. I've made posts about my heat intolerance as well because it's very debilitating. Last summer, my husband and I went to visit a friend a few states over.... It was tough, but we made the drive. It ended up being some of the hottest days of the year there and simply walking from the car to the hotel or from the hotel to the car, I immediately started going into shock. I think it was 95 and as soon as I stepped out, it was all over. My husband had to hold me up as he got me to the car and we blasted the AC on. I get into big big trouble if I'm in the heat..It's so bad that I can't even speak for myself or even tell ppl what's wrong. A car even when it's 80, will get hot inside very very quickly.
  16. Yes I have major problems on the phone, but for me I don't think it's social anxiety because I've always been a very outgoing person. In fact before I got really sick I worked for a cell phone company and was on the phone all the time and was in competitive sales with a quota. Nowadays I get the shakes, headache and feel awful too. I will be keyed up for a while and then eventually I will crash very hard.
  17. Yes I started getting them a few years ago too. It is worse when I'm on beta blockers. I wear socks and slippers at all times while awake and they have finally healed. If you have an outbreak of them right now, then it will actually hurt at first doing this because of the extra warmth. However once it starts to heal, the socks and slippers will feel good. The foot that gets them still looks more red than the other, but it's no longer swollen or painful. I also have to watch how warm I make my bath water too. If I stick a freezing cold foot into warm bath water that still causes problems with chillbains too. I used to warm my cold feet next to a heater and that's what made me get them.
  18. Every dentist I've been to, including oral surgeons, they only had it with epinephrine. I would definitely call ahead of time to make sure you even have the option. I don't have reactions to the injections though.
  19. Karebear, I had a similar experience. I got sick while in high school, so even back then my friends began pulling away from me because I had to quit marching band and symphonic band. Most of my friends were from those activities. After high school, they wanted nothing to do with me because they went off to college and made new friends. Nowadays I find it hard to make news friends because of POTS. You can't partake in their activities or do the things they like to do (go shopping or whatnot), so any time I've made friends, I've lost touch with them quickly or it's always friends that just keep you are arms length. I'm also 29 and most ppl my age have kids. Since I don't and have no plans to, it's really hard to relate....I've never been much a kid person any way. lol Thankfully my family has been pretty good, but they are limited with what they can do. My dad and I probably understand each other the best. He has COPD and we have such similar symptoms but they are caused by different things. My sister had brain cancer two times, so she gets it too. My mom is wonderful even though she doesn't have health problems. My brother is supportive as well. My best friend is my husband. We have been through so much together.
  20. I was given nitro during my first TTT. The vomiting, sweating, lightheadedness and headache could have been from the nitro itself. It made me very sick which is apparently common. I have no idea why they gave it to me though. It made my HR/BP take off and was extremely unpleasant feeling. I remember the terrible headache very well.
  21. I went undiagnosed for 8 years. Age 16 to 24. Then after getting diagnosed, the meds just gave me a lot more problems or did nothing. I didn't have any positive change with salt loading, fluid loading, exercise, saline IV's, electrolyte drinks, DDAVP, midodrine and florinef, so I don't bother with those. Beta blockers work a tiny bit, but again not worth the other symptoms I get from it. I consider myself an untreated POTSy at this point... I went to the doctors 5 years ago to get a diagnosis and treatment, but I realized it was not what it was cracked up to be...Some people seem to do better than others with various treatments and some people just get better with time or go through relapses. I definitely can't understand that because that has not been my personal experience at all. For me it's in Jesus' hands at this point because doctors and naturopathic means have had no appreciable impact on my health at all. Take care
  22. If it's an indoor pool, then for me those are impossible to handle. It's too humid in those places, so no matter what I'm doing (sitting, lying down, in water), my HR is always too high and I feel sick. The water can be too hot as well.
  23. Yes I definitely have this problem. For me it's weird though because sometimes I'm totally ok and then other times it just hits me like a ton of bricks. For me I start to feel a bit weird in my head. I feel the life begin to drain out from me. Then my HR will increase to 130+ even if I'm sitting. That's always a sure sign for me it is time to remove myself from the environment. If I don't I usually become a total basket case. I will just begin to cry, which in turn makes my body even more upset. AHH! Then after experiencing sensory overload, I have to take at least 1-2 days to recover. That means no visitors, no talking on the phone or anything. Last night I went to a church meeting and within 3 songs, I was done. I had to get up and run out of the room away from everyone or I was going to interrupt the whole service. I actually did just that a few months ago and that's embarrassing! So I was able to get out before that happened and I put my head down on the table and just waited until the singing was over. I should have brought my earplugs, but I did not expect to react so poorly this time. Thankfully after some prayer, I did feel better and was able to continue on so that was fantastic. For me I have this problem in stores when it is busy. This is why I go late at night when no one is around...haha It is not uncommon to see me at walmart at 3 am!
  24. Ingesting a lot of cabbage like this may affect your thyroid. Something to keep in mind!
  25. I'm surprised more people haven't posted to be honest. I haven't found any results with Florinef, midodrine, increasing salt intake and even saline IV's. Beta blockers just chill the heart out, but none of the other orthostatic symptoms and nothing gets rid of heat intolerance.
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