Tammy

I have had horrible dry eyes since being sick. I use to wear contacts with no problems, than basically over-night, my eyes got so dry that even at night I'll wake up and have to put eye drops in to help.

Yes, the virus is messing with your thyroid antibodies. However, if you notice that even after the virus is gone you are still feeling like it's high, you may need to temporarily tweak it back for a while. I'm also the same way, that if I miss a dose of my thyroid, I do feel better that day (really weird), but if I miss more than a few days, than my fatigue (different than the weakness I get from POTS) kicks in and I'm a puddle on the floor. Hope your feeling better soon

Hi! I want to second the idea that if things get really bad, to try and find someone to care for your other two children's so that you can focus on resting during this pregnancy, if you already haven't. I would never go through what I did when I first got sick and trying to take care of kids while you are that sick, is beyond difficult - been there and wish we could have figured out someone to help with my daughter. Otherwise, you can try drinking ginger tea by YOGI and add in a little bit of ginger spice too. But ask your doctor first before, to make sure that's okay for you to do while pregnant. Compression stocking may help some and also if your doctor can find a med that you can take while pregnant to help the tremors/internal vibrations, maybe just benedryl and tylenol together sometimes takes the edge off of them. Hope you are feeling a bit more functional soon

Hi! What I'm wondering is what type of body positions bother you? I think that almost all of us can't be one our feet for more than a few minutes at a time, however, does other positions affect you also? For me, to feel most functional, I have to be in a reclined position. If I sit on a regular chair with my feet up on a foot stool, I can last maybe 30 minutes, maybe bit longer if I'm really lucky. But when I sit on the floor, with my legs crossed, such as when I'm playing with my daughter, I only can tolerate that position for 5 minutes or so. Anyone else experience this? I would think that since I'm still sitting, it shouldn't be a problem, but it IS!

Hi! Yes, I've tried many SSRI's with no luck. The worst was Paxil for me as it made my symptoms so much worse, my heart rate went up and made the adrenaline surges stronger. Zoloft made me more lightheaded. Prozac I took the longest and went through **** when the doctor decided it wasn't helping, and it really wasn't but my body reacted to not having it in my system also. Lexapro I think I also tried at first, but again, nothing seemed to help. Tried the natural version also, 5-HTP and it made my insomnia worse, so I had to stop it to get a little rest. I guess SSRI's work for some of us, and others it makes things worse. I sometimes think the SSRI's actually set me back and wish I would have never of taken them!

Yes, you are not alone in this. I've been unable to function since September of 2005. I'm mostly in bed or in a recliner. There are days where I push myself and than there are most days, where it is literally impossible to 'push myself' to be upright for more than little spurts. I.e., unload the dishwasher... and I'll have to rest for an hour to get enough strength (for me, it's not fatigue - but severe weakness) to reload the dirty dishes, etc. If I play with my daughter sitting upright on the floor, within about 15 minutes, I need to again rest, etc. This is EVERY day, and I truly have not a "GOOD" day in what seems like forever.

This is not a mind over matter illness, because no matter how much you want to do something, doesn't mean your body is going to be able to do it!

Wow, that sounds interesting too. I wonder what our oxygen levels are when we exercise. I've never had that test, but I do get terrible lightheadedness, weakness, nausea, and very fast heart rate from just a little bit of movement. I don't think I could do 3 flights of stairs. I have 14 steps in my house from the basement to the upstairs and I take a break half way, to catch my breath. Really wonder if I'd have the same thing you have going.

Yeah, you are correct that anything under 90 does require oxygen. My 4 year old daughter had a severe case of pneumonia this past summer and after her surgery to scrap the gunk off her lung and chest wall, her oxygen levels dropped and as soon as it went to 89 the monitor started beeping and they had her on oxygen until her levels were up.

I'm not even sure why type of doctor to see. I saw you mentioned a pulmunologist, which I've never seen, but so often I post about my symptoms and get responses that it could be asthma, but yet when I look up asthma, my symptoms are exactly like that either. Something for me to think about I guess

Yes, get these too. Mines is more through my whole body, not centralized to one location. I actually stumbled on a website for people going through menopause somtimes have this also, so I'm wondering if this is just how an autonomic nerves system reacts to stresses, which our bodies are also in because of this illness? Not sure.

I'm a bit concerned as usually I only get this type of symptoms when the weather is humid. The past few weeks on and off, I have times where it's as if there is not enough oxygen in the room and I have to take quick shallow breaths and really focus on breathing. It's not really shortness of breath, but more like my oxygen just isn't enough. Anyone else understand this or experience this also? It has me kind of concerned that something else is wrong, but I think this is one of the symptoms I've heard of us having.

Thanks

It's interesting to me that some of us have a thyroid condition also. I'm wondering how many of us have it, and also if you don't, do you have a parent who does? Thanks

I wonder if Midodrine would help with low pulse pressure... anyone know? I usually run 95/65 so I don't think they would try midodrine for the low bp, however, I have lots of issues with pulse pressure, where it will be 90/79 and I will feel like death when it does this. Usually always happens when I've been upright for too long.

Sometimes I just really would like to be able to take a shower or a bath and keep on going. I know, no matter what temp the water is, or if I take a bath or a shower, I'm going to be down for the count for a long time afterwards. Here I am, laying in bed, 'recoving' from a bath. This is just rediculous... seriously! I feel awful, but at least I'm CLEAN Now my little girl is taking a bath too, and hopefully I'll be able to function enough to get a towel and her outfit for her when she ready to come out (she's 4). It's raining today which always makes me feel oxygen deprived when it's humid, so this is probably just the icing on the cake! I know, my other symptoms can be so much worse and being homebound isn't helping me frustrations, but sometimes I'm so thankful to have a place to vent where everyone understands Thanks !

I don't know about Cardiomyopathy, as I've never heard the term from anyone in my family, but on my mom's side there were many of her sibbling who had heart failure. She has had severe headache most of her life, so maybe this is connection also. I really think for some of us, there is a genetic link, but where that link is can be difficult to trace at times.

I get the 'bad mom syndrome' feeling too. Everyone's advice has been amazing and true. Even though mine became life changing after a virus, I had a genetic disposition to it, as I grew up with my mom being weak and sick at times in the same way I am, but in those days doctors didn't know what it was and chalked it up to anxiety and stress. So I'm thankful that I'm living in a day and age when there are a FEW doctors who understand it and also computer and websites as this that offer support.

So from experience of being a child with a sick mom, I can say that it made me become a very compassionate and caring person.

Short and aveage weight. When I'm at the worst of my symptoms my weight will drop.

Every once in a while we all need to have a pity party for ourselves, and that's okay. We put up with struggles everyday that most people don't, so feel free to vent here anytime. We really do understand

Yup, I'm homebound also. My recliner and bed are my best friends I'm also a part of soldier's angels, however I've only done it once as I couldn't afford to send the care packages once a month and also can't do shopping for the items needed for care packages, but if you are well enough to do that, I'd recommend trying it.

Yes, I know the feeling of being too sick to really care about not having anyone to socialize with, but yet still wanting to be social... if that makes sense.

I do have a family which is a blessing but it's a toss up as to how it affects me socially. Husband has to do most social events alone, and doesn't always like that. Comments are made as to how much he misses out on activities with friends who are couples because of my health and things like weddings, he can't go to alone (feels weddings should be attended as a couple... I don't really care either) and so he skips them and then blames me for missing them (even though I told him he should just go on his own). SO it goes.

I would love to chat, however, since I'm homebound, I don't have much to talk about. My daily life consists of getting up, taking meds, trying to maintain the house somewhat... if I get the dishes done once a day, I feel I've had a good day; and trying to care for our 4 year old, but she has TV, the Wii, her computer, and movies that keep her busy and I'm too sick to play with her as I use all my energy just to make her breakfast, lunch, snacks, dinner, and also making sure she bathes, brushes her teeth, and other daily living needs. OF course the dogs need care also, and just getting to the door to let them out can be a challenge too. Otherwise, I don't have a social life and no job to talk about, etc So I'm a bit boring, but if you still want to chat, I'm here

I just wish they did Echo's when we are standing upright as this is when most of our symptoms are the worst. I always wonder if once I've been standing and start to have symptoms, if they did an Echo as I continued to be standing what the results would be.

Also I too have mild regurgitation of both the mitral and tricuspid valve. Is that pretty normal for everyone?

I was diagnosed with PCOS years before developing POTS, so not sure if there is a connection. I know people who have PCOS who are healthy too.

For me, I wish my doctors would have discovered xanax as an option for me to use as needed 7 years earlier than they did. I think it would have prevented many ER visits for me. It only works for physical symptoms for me, so adrenaline surges it works perfectly for. If I'm worried about something or stressing about something, that it doesn't do anything for. I can't use it for sleep, it actually makes me have fragmented sleep, so if it's too close to bed time, I don't like to take it. I can tell you that start out at a really low dose, less than the amount a doctor may recommend. Cut it in 1/4 so if you are sensative to the amount, you don't rule it out because of getting too much in your system that for the normal person is the right amount.

Oh, and also, show her how your blood pressure drops and your heart speeds up when you stand using a blood pressure monitor. Show her how you can't even feel your pulse when you've been on your feet for too long, and any other things that are visible. This is the only way people can understand it. If your heart is racing out of your chest and your shaking like a leaf, but are calm and collective, she'll realize it's a physical thing, not psychological.

OMG Smack that woman (I know she's your sister, but really!) so she can get some common sense in her head. She is being very ignorant and inconsiderate to your health.

Basically I take an antihistimine when I've eaten something that causes me to flare like things with MSG or other preservatives in them that causes my histamine activity to increease. Than Benedryl or something like that will help. If I haven't eaten anything, like right when I wake up in the mornings, I need my beta blocker because just getting up will get my adrenaline going. Hope that helps.

I take Klonopin also, and it does not cause hair loss for me either.

My aunt had this exact surgery this past year and she also had many health conditions and is 79 years old. She did well through the surgery, the recovery however has been another story and continues to be. Just to be aware that afterwards is when the real challenge will begin, so you may be there longer than expected, so pack plenty of clothing, etc. for the visit. Hope all goes well. Blessings