Bears Mommy

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.

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?

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.

I get this all the time. I tell people that some days it is difficult to lift a laundry basket up.

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.

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.

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.

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.

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).

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.

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.

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!

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.

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.

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.

I want to cry for you. I recently found that I had a sulfite sensitivity too. Sulfites are in everything! I see other members suggesting things and in my head I'm saying "nope sulfates in that." There were even sulfites in my kids organic mac and cheese! It is so awful, not to mention your other allergies. You mentioned lentils. I'm wondering if you could get some organic lentils from a co-op. I'm thinking that those shouldn't be sprayed with sulfites. I know that organic brown rice shouldn't be sprayed either. Did your mom use any sugar to make her bread? Cane sugar supposedly doesn't have sulfites, but beat sugar does. Sorry if this isn't any new info to you. I know this has to stink, I'm so sorry you have to deal with this.

I've been running a low grade fever for the last two months, it goes higher in the evening. I normally have a low temp - about 97.1 on average. It's so hard to convince doctors that I'm running a temp at all, when it's only got as high as 99.7. These last two months have been some of my worst, I've felt absolutely awful. About a month ago my lymph nodes in my neck swelled and have been very "bothersome." At first I thought it was a reaction to a medication, but the swelling hasn't gone down. I feel like my throat is swelling shut some days. I've been wondering if it's epstein barr virus doing this to me and making everything a thousand times worse. My temp is slowly going down too it's only in the 98 degree range now and I'm starting to feel a little better and I don't know if it's from the florinef or the virus is being fought off. So many unknowns....

So I've been taking fludrocortisone for 6 days and was told that it would lower my immunity. My son tested positive for strep yesterday morning. I'm feeling really crummy today, at first I was chalking it up to a bad day but I think I'm getting strep too. So anyone know about drug interactions and maybe what I should be doing now? I have some amoxicllin, can I just take that or should I go in.

I get the Crystal Light Pure from Super Target - but I think you can get it anywhere. It's pretty new though so I don't know. I like it because it has Sugar, Truvia, and it's colored with purple carrot and hibiscus flower extract. It has 35mg of sodium, 3g of sugar, and 15mg of potassium. The grape flavor is pretty yummy. Here is a link to the product page. eta - it looks like some of them have different amounts of sodium in them - so you have to look at the labels.

My husband has Marfan's. He had it diagnosed at the Mayo clinic in Rochester when he was a teenager. He was rediagnosed by a geneticist, right before our son was born 7 years ago. His tissue is very stretchy. He is always pulling muscles, pulling joints out of sockets, overextending muscles - it's a little scary. He is double jointed (really triple jointed). We have to watch his heart because of it. He's had pneumothorax (his lungs spontaneously collapsed). He has stretch marks from growing as a teen. He however has no POTS symptoms, I do. Its almost comical. If you have any specific questions I could try to answer them. If you talk to your doctor make sure that you have some solid evidence for them. One of the makers that our doctor talked about is that your arms are longer than you are in height. My husband is 6'5" his "wing-span" is longer than that. Does any of that sound familiar to you?

So you all think that I really should go see a specialist for this and not stick with my cardiologist that I saw before? (not that I liked him that much). The University of Minnesota seems to have a few doctors that on another website are recommended. I've had pretty good luck at the U of M before with my husband and my son. Maybe I'll try to give them a call - or should I talk to my family doctor first since he knows about POTS? I guess I was also wondering if I even had any legitimate concerns about having some form of dysautonomia. I think I'm being treated for it, but I'm not sure. Godsgal - I am pretty thin, but I am super small boned so if I go over 100 pounds I start to put on some weight around the middle and it looks yucky on me. I do have some food intolerance. I don't handle processed foods well at all. We think I have a sulfite sensitivity - so a lot of prepared foods are out (and a lot of high salt foods too). The funny thing is that I'm a huge foodie - so I make most of our food from scratch. My mother's side all has horrible heart disease so I have been preparing all our food thinking about having a low sodium/heart healthy diet. I've been sabotaging myself without realizing it, I don't even like salty food anymore! This high salt diet is really hard for me. I don't do well with dyes or HFCS (so Gatorade is out). I've been drinking the Crystal Light pure sport drink that has "all natural" ingredients. I also do horrible with too much pork or anything with too much fat in it. But I can do most foods in moderation, in fact I believe in moderation with almost religious devotion. I've learned not to eat too much at one sitting - that almost always results in me vomiting or having horrible stomach pains later. Oh and I do get flushing from time to time... not often, but sometimes.

I'm in Minneapolis. I live near some pretty big hospitals with some pretty big heart centers. I went to a major heart center at Mercy hospital to do most of my recent testing. I know that I live near the Mayo (in fact my BIL interned here as a nurse practitioner). But I know the waiting list is long to get in. It is also 150 miles away and so I wouldn't be able to make anyone there my primary. I know that you can do the TTT, but what other tests are done?

Hi everyone. I really hate being a newbie on a board. I’ll try to make it easy and do a short version and then give anyone that has patience enough the long sob story. Short version: I’m a 5'1", 95 pound, 34 year old woman. I’ve had symptoms since I was 13. My symptoms sometimes are unrelenting, sometimes barely noticeable. Symptoms include fainting, dizziness, digestive issues, low blood sugar (tested as low as 56), low blood pressure (mainly low diastolic - it ranges anywhere from 49-80 depending on many factors - but it hovers around 60), fatigue, vomiting (mostly morning - I can only drink coffee), almost constant nausea, constant dehydration, sleep issues, tachycardia, shortness of breath, weakness, menstrual irregularities (often I have menorrhagia), low body temperature, swollen glands, pooling of blood in my feet when I stand, intolerance to cold (I sit in front of a portable heater all the time), intolerance to extreme heat, occasional tremors, sensory overload issues, and more that I can’t remember at the moment. I’ve had some testing done (holter, stress test, echo, thyroid, cortisone, blood metanephrines, A1C, blood glucose). I was told I have mitral valve prolapse, and hypovolemia. It was suggested that I start a high salt, high water diet and given fludrocortisone. My cardiologist told me to come back in a couple months and we would go from there. I wasn’t given a diagnosis and I’m really not sure what to do from this point on as far as medical stuff goes. So my question is what do I do now…? If you want the long version keep reading – lol. When I was thirteen I fainted and had a seizure. It was pretty bad. Since that time I have suffered from severe vertigo and fainting all my life. If I hurt my fingers, got too hot, didn't eat well, got too emotionally stressed for too long of a period (say months) I could pass out. Heck, sometimes I can’t even take a shower without sitting down. My symptoms are always much worse around my period. The problem is that the symptoms come and go. When I was working 3 jobs, (one of them overnight, one emotionally stressful), TTC, etc - I would pass out at least once a day. But it wasn't true passing out most of the time. I would loose consciousness for 1/2 second or so (enough so that I couldn't retain my upward position) and would end up on the floor - but I would be okay because I regained consciousness before I hit the floor so I was almost always able to catch myself. There were times I would land on the floor though without waking up first. I’ve been pregnant four times. When I got pregnant the syncope got better... I did however have hyperemesis gravidarum (throwing up 30x a day) and preterm labor. I now have two children. The symptoms returned after my second child stopped breastfeeding exclusively. I had a late 1st trimester miscarriage in February 2010 and hemorrhaged pretty badly. I was anemic for months. My symptoms have gotten really bad since my miscarriage. I passed out (momentarily) last summer while I was in the car (my kids were in the back). I pulled over just in time and was able to black out right after I parked the car. I don't have to tell you that it was really scary. I started (once again) slowly searching for answers. I got super concerned last November when we joined the gym. I got on an elliptical machine and my heart rate registered well over 200 bpm after only 10 minutes of light-ish exercise. I was sent to the cardiologist and had a full work up done. I had a stress test done and yes my heart rate went very high with exercise. I had a holter monitor for over a week and everything looked relatively normal except for an elevated heart rate. I had an echo and found out I have mitral valve prolapse (something I wasn't told until a couple weeks ago by my primary physician). The cardiologist gave me a Fludicort and told me to up my salt without telling me why, and only seemed to me to be concerned about the syncope and not the tachycardia which really frustrated me. He told me to go get my cortisol tested first before taking the fludicort and then come back in a month or two. He didn't tell me much else. He mumbled something about doing a ttt, but that they aren’t always conclusive. I was so frustrated that I didn't get my cortisol tested and I didn't take the meds. I just was so frustrated that he didn't tell me why he gave me drugs and didn't give me a diagnosis - my stubbornness got the best of me and I just ignored everything… dumb, I know. But I've been dealing with this pretty much my whole life with doctors just brushing me off so that's what I thought he was doing. I got worse over the winter. I didn't realize how bad I was getting. I am now having increasingly bad vertigo again. It's so bad that when I’m sitting or lay in bed I feel the room spin and feel lightheaded. I started exercising again at home this last Jaunary and was feeling a little better for about a month (even though it would wipe me out for the rest of the day) - but then one week I overdid it, the next day I went to the Mall of America and walked around for a long time. I got sick, got my period, a few weeks later got my wisdom teeth out, got my period again, then got a UTI, had a horrible reaction to the meds. After that succession of events my symptoms were as bad as they ever were. I passed out in Target, passed out a home a couple times. I can't clean the house or do a couple loads of laundry without feeling so bad the next day I just can't function. My mind gets fuzzy and my body is so weak it's hard to pick up a basket of clothes. The fatigue is honestly the worst it has ever been. I hate doctors. They never take me seriously. I’ve been given Dramamine, anxiety meds, and completely brushed off. I ended up talking to a few doctors about various things during this last month. Once was during my horrible reaction to some meds - I went to the ER. The ER physician told me about Addison’s and thought I should be tested for it. That scared me enough to go back to a doctor. A brand new family physician FINALLY took me seriously and mentioned POTS to me(I love him BTW - made him my primary that day). He told me the cardiologist must have suspected POTS and that is why he gave me the Fludicort. He then referred me to an endocrinologist to get my cortisol tested as well as some other tests. All the endo tests came back negative. So now that I know I don’t have Addison’s or any other weird thing I started on the Fludicortisone (four months later after I was given the prescription) and doing what the cardiologist asked me to do. I’ve been on it for four days and started the high salt/high water diet. I’ve been pushing myself to do stuff – but not too much. I’ll start exercising soon (even though it might kill me), but I’m starting on housework first – my house is a disaster. I’ve been doing tons of research and I’m not sure I have POTS though. I have a heart rate monitor. My resting HR is 64 when lying down. When I stand up my HR initially skyrockets then slowly goes back down to the 70’s or 80’s. That doesn’t seem to match with POTS. But when I sit it’s in the 80’s. When I start walking around the house it goes up in the 100’s. When I take a drink of water it goes in the 110’s. When I lift my daughter up it instantly goes into the 130’s. When I start doing aerobic activity it almost instantly is in the 160’s to 170’s and finally when I get on the elliptical machine I goes above 200. Obviously something isn’t right. I just don’t know what to do from here. I don’t know what to ask of my doctor or what doctor I should go back to. Any help at all would be appreciated. Thank you! ~heather