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Tammy

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Posts posted by Tammy

  1. Yes, the fast heart rate is probably from the food poisoining. I spent last night with my heart rate stuck at 120 and felt like throwing up. I must of eaten something bad, not sure. If you can force yourself to take your beta blocker, it will help the heart rate.

  2. Hi! I'm curious as to if anyone has had their homocystine levels checked and if so, what were they? About 4 years ago, I had learned about how this shows inflammation in the body and is also a risk marker for heart ailments. My doctor didn't think that testing the levels were necessary, so it was a no go for me, however I'm wondering if anyone else has tried to get it tested and how were the results.

  3. I so want to be able to work. I miss it so much when I'm 'feeling up' to missing work. Mostly I know that every time I try to push my body to be on my feet too long, it just seems to make things worse. Hopefully you can find medications that will allow you to get back to work. I have tried so many and they seem to make me worse. Frustrated and totally understand how you feel :)

  4. My cardiologist absolutely refused to advice me to get one as I asked if one would help me get out more as I'm homebound. He said that then I would become completely reliant on it. So instead I just rarely leave the house. It's been 5 years and it would be nice to do a few more things but if my doctor says NO I guess that's what I'm suppose to do. Hopefully you can get your doctor to recommend one and become more active in life :)

  5. Mine does that same thing. It will go high during an adrenaline surge and than will drop down, to a bit lower than normal and then reset itselt. So for an hour or so, it may be 160/100 during the surge and than will drop really low, like 85/50, and than over hours/day it will go to my typical 107/67. Not fun, but that's the cycle it seems to have.

  6. Maybe it's just the florist we go to, but usually they do a wonderful job of putting together nice arrangements for funerals. Typically they just ask how much you want to spend and if you want a fresh arrangement or a plant to be sent. Depending on the person, roses may or may not be the right flower to send. I know of a friend of mine that actually hates roses. If you haven't been happy with the arrangements your florist provides, if you have other florist in your area, try them.

  7. Yes, this happened in a similar way to me also. I was so surprised that a few of the people I had worked with completely turned their backs on me when I started getting to sick to work. These were the same people that when I was healthy I just LOVED working with. Amazing how an illness can help a person discover who their true friends are.

  8. Interesting that you tied it into your thyroid med. It took me almost 4 years to figure out that I needed to lower my dose a bit and it has helped in some ways. It really was weird because my TSH wasn't too high - like 1.7, but I asked my doctor to lower my dose just a little and he agreed to give it a try. Now I test at about 2.8 and things related to my throid issues are a bit better. I wouldn't stop taking your thyroid meds, just go into your doctor and ask him to lower your dose (a tiny bit)... like if you are on .88, go down to .75 and see if that helps after a few weeks/month. Skipping your dose isn't recommended by most doctors.

  9. Same here. Very sensative to light.. it makes me actually feel super dizzy and lightheaded, off balance. As for seeing sparkles or floaters, not yet. My eye doctor asked if I experience that, and I said no. She said that I have scarring on my retina and if I ever notice twinkling lights, light christmas tree light, or that it is like a shade of darkness coming down in my vision, that would be a detatched retina and I would have to go to the ER immediately. Kind of scary being in my 30's and having to watch for signs of a detached retina. YUCKy!

  10. I made the same mistake when I first started having symptoms and didn't realize that a drink would be a problem. I never had an issue with having a mixed drink before, so when it suddently became a trigger for symptoms, I learned really fast that I didn't want that to happen ever again. I haven't had any type of alcohol for about 9 years. Periodically I think how nice it would be to just have a small 'fun' drink, as they did taste really good - but just not worth the scary effects that follow :blink:

  11. Ive been thinking about this. When i was young every time i got the flu or sickness I would feel 'spaced out' for a few days which I thoght was normal. Turns out that its not normal at all. Perhaps now I have Ankyoosing Spond Im inflammed all the time and this brings on POTS all the time as well??? Mmm.

    Oh how interesting. My neice gets very spacey for a few days after she has the flu and her blood pressure gets really low. She's young and healthy, so hopefully she won't develop POTS as she gets older. She is the one that takes care of me when I'm too sick to myself. I'll have to read up on AS as I have never heard of it before.

  12. My cardiologist actually invented this and he says it improved survival of cardiac arrest by 75% if used correctly and in an immediate time frame. He was just in the process of working on a patent at the time. I have a few of them around the house that he gave me to try. I keep them in places where I can use them if I suddently fell extremely faint. For instance, when I climb up on a chair to reach things in our tall cabinets, I keep one up on the top shelp because I usually get dizzy just from stepping ontop of the chair. For those type of spells, where your vision starts to get dark and you feel faint -YES, the breathing device does work. He had me also use it in intervals thoughout the day. He really wanted some feedback as to if this would also help OI patients, so he was excited to have me give it a try. If you have hyperadrengic POTS, this device doesn't do anything for the dreaded adrenaline surges. For those who have more fainting type symptoms, definitely give this a try.

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