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Bears Mommy

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  1. I *think* they were able to diagnose my low blood volume by my constant dehydration. Every time I go into the ER I'm dehydrated. Also I had a ton of tests done last November and my Blood urea nitrogen (BUN)/Creatinine ratio was really high and I guess that can indicate dehydration? Funny as I was feeling pretty good that day! The specialist just told me that I had low blood volume. I'm not quite sure why he knew that, I wish I did. He is a Dysautonomia specialist that I found on the DINET board so I assume he really does know what he is talking about.
  2. I went to the specialist yesterday. My GP thought I had POTS, but the specialist said I absolutely do not. My weird diagnosis is vasovagal syncope, overlapping with Orthostatic hypotension, and of course Hypovolemia. The funny part is that the treatment is identical to POTS treatment. I have to salt load (2-3 grams of salt a day), consume 20 - 40oz of sports drinks a day, and he wants me to start Dr. Levine's protocol! He even wants me on a rowing machine. I'm also to do "standing treatment." If that doesn't work we are going to try the medication route (I have already tried fludrocortisone). He said that if I get my blood volume up and start exercising my heart rate should go down and that I will faint less. I feel like I've been prepped for this already. I know this is still a form of dysautonomia... I just feel weird about the diagnosis, that it is NOT POTS and it is as bad as it is. I feel like I've been a baby about almost nothing. POTS seems so much worse to me than what I have, but the treatment is just as daunting. *sigh* Anyone else in the non-POTS club, but still doing the Levine protocol?
  3. I finally gave in and got salt tabs too. They are amazing! I feel better when I take them with a glass of water than I do on Florinef! Lots less peeing too.
  4. I get this all the time. I tell people that some days it is difficult to lift a laundry basket up.
  5. Lol about the husband thing. Mine isn't very supportive and I know that he would roll his eyes at me. I wonder all the time about Lyme. I grew up and am still in Minnesota, tick capital. It just became a regular thing for my mom to pick ticks off us girls. I've had so many tick bites I can't count them, so has my dad who has many of the same symptoms I do. We used to go to my grandfather's 120 ace tree farm where my dad wound take any fallen trees and turn them into firewood and later lumber. He came back with ticks constantly and so did we, sometimes multiple ticks. I don't know anything about lyme except I've never been tested.
  6. Does anyone have more info on this? My father seems to have a lot of the same symptoms I do. He has extremely low blood pressure, tired all the time, etc... you all know the main symptoms. I just can't find a lot of info on this. It seems that since I've had this pretty much all my life that there is a likelihood that it's genetic.
  7. Oh geez, yes a lot of it fits, but I think a lot of it fits a most of us too. They thought for a while that I had Addison's (very similar symptoms to Sheehans). I am so lost in this, I don't even know what to do next. I'm praying like crazy that the specialist that I'm going to in September takes an interest in my case. My primary doctor acknowledges the OI, but doesn't want to go farther than that. All I know is that I am so freaking tired that life is miserable.
  8. I have to eat small meals too. If I overeat I will vomit. Certain foods make it worse, but I can eat anything if I have just a little bit.
  9. This is very interesting. I've had some kind of dysautonomia since I was 13, it was sometimes barely noticeable, sometimes would make me pass out every day. A year and a half ago I had a late first trimester miscarriage where I went into labor derived a baby, because I was still in my first trimester they told me I needed to stay home, of course I hemorrhaged and had to be rushed to the emergency room because of my extreme blood loss. I was anemic for months after. I have never recovered from it. My fainting spells have been awful since then, my fatigue is over the top. I can't exercise, do housework, anything without my heart rate going so high that I pass out, nausea, etc.... I've always thought that the miscarriage made my dysautonomia much worse. I've been tested for everything under the sun and this is the only thing that they can figure out is wrong with me (I get to see a specialist in September for the TTT etc).
  10. I feel awful about four days before my period and during the whole thing. I bleed VERY heavily. My only theory so far is that all that blood loss causes a drop in my blood volume and therefore my symptoms are worse, but I could be wrong.
  11. I had huge issues when I skipped a dose. It's why I quit taking it, but it took me over a month to taper off of. I might be wrong but from what I understand Florinef is a corticosteroid, specifically aldosterone. Aldosterone is a hormone that is made by your body. What happens when you take Florinef is that you body recognizes that there is enough aldosterone already and decreases it's production. Therefore if you miss a dose you don't have enough aldosterone in you body and your symptoms will increase. I missed a dose and got very sick; shaking, vomiting, weak, exhausted, etc - as soon as I took the missed dose I felt better. So yes, i think one missed dose can be detrimental.
  12. Yep it happens to me too. If I stand still for more than a minute I can watch my feet turn blue and swell. I took pictures of my feet like another dinet member did and my feet were even bluer I got super dizzy and almost passed out - I had to hold on to something. http://www.cranberryteatime.com/2009_02_01_archive.html My doctor explained that it is because our blood pressure doesn't adjust like other peoples when we stand so the blood pools in our feet. I can't stand still or I will pass out - I've been like that pretty much my whole life. It was pretty bad in college when I had a cashier's job. I passed out in the middle of a Christmas rush!
  13. I've been taking florinef since the 12th of this month. Well I've been playing with the dose and taking it at different times a day etc. I didn't think it was helping me that much. Today I didn't take it at all. Then tonight I started feeling super nauseous, trembling, really weak and just plain off. Thinking it might be the missed dose I took half a pill and an hour later I felt better - I stopped shaking, could eat a bowl of cereal (my safe food) and felt moderately better. I'm so new to this all can someone please explain to me why this happened? Does my body now need the florinef? I thought since I had only been taking 1/4 of a 0.1 pill I would be okay skipping a day. I guess I was wrong.... I just don't know why.
  14. Hummmm.... I'm not sure about either the raisins or the sunflower seeds. There is conflicting info in the internet about it. I think your safest thing is to call the company or go to the web site and see if you can find any info. If you go to Newman's own site they say that their raisins contain no sulfites, but I'm thinking there are a few naturally occurring sulfites. On this page on the bottom there is a trail mix that looks like it *might* work for you. It's called "Not Nuts." http://www.food4celiacs.com/ShopOnline/JOY/220.html Honestly though I'm wondering why a doctor hasn't put you on some kind of IV nutrition until you figure some more stuff out. I know it's not the same but when I was pregnant and had HG (and threw up 30 or more times a day) the weaker I got the less I tolerated even my "safe" foods. Something that is well known in the HG community - the weaker and more dehydrated your body gets the more it rejects everything (even medication!). My thought is that you are getting too weak and your body is reacting very badly. I know that I'm a newbie so I don't know much about your story but I'm wondering if you would do well from IV therapy (the IV with good stuff in it). Are you dehydrated? (Maybe we all are?) Can you just go to the ER and tell them that you've been sick and are very dehydrated and haven't been able to eat for weeks? They should at least be able to help you with that. I think every study ever done on POTS sites that universally, patients all feel better after IV therapy... it would be worth a try. eta - have you checked for ketones in your urine? It might be very important to do. You can get the testing strips at any local pharmacy. If your levels are very high I would call your doctor and tell them about it. It can be dangerous if your levels get too high. It would help you get some quick attention if your levels are too high.
  15. In all my searching I found this site very interesting. Especially this quote in relation to the Epstein-Barr Virus. I'm wondering if repeat infections of EBV end up being on such a low scale that they are hard to diagnose? Instead of having full blown mono again, your body fights - but on a lower level causing low grade fevers, swollen glands, fatigue, and general malaise. So you might have an elevated white blood cell count, but it is not high enough for them to diagnose you with mono or any other infection.
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