boymommy3

I am right there with you Kris. My weight gain has been more gradual and I know mine isn't because of medication. I weight more now that I did on the very day I delivered all 3 of my babies and I gain a BUNCH of weight my first one. I can't seem to loose weight at all right now!!!

I am so sorry to keep posting these "woe is me" posts especially because I really believe there are many of you on here who are way worse than me! You, btw, are my heroes to be able to withstand this for such long periods of time. My husband left to go out of town until tomorrow night. I am VERY clingy to him when I am like this and I HATE when he is gone! He's like my security blanket. Which I know can be a bit stressful to him at times and I feel guilty for making him feel like he can't leave my side. I have my boys here but I certainly don't like for them to know I am feeling so bad. I have such anxiety!!!! I suppose that's what it is. The most pressing symptom right now is this weird head/facial stuff. It's driving me NUTS! I mean I simply must get some relief from it!!! I asked a question about it on here not long ago and a few people posted about have some similar issue but not exactly what I'm feeling. I honestly think my anxiety would go down if I thought there were others feeling these same head things, although I certainly wouldn't wish it on anyone. I keep having these pressure/tingling/ creepy crawly feelings on my head and face. I feel tons of pressure in my upper and lower teeth sometimes and also on the bridge of my nose. This is with NO sinus symptoms what so ever. It's not just those areas though. I have these feelings all over my head in different places. I sometimes say I feel like there is a fist inside my head trying to come out. I also feel like my facial muscles get really tight and like I can't move my mouth or jaws properly. It's not painful though so I do not feel it's TMJ at all. I am also feeling like I am having a hard time getting my words out if that even makes sense.No one really notices it but I do and I also notice that get my words mixed up more easily. I will also feel like the muscles in my hands are tight as well or like they just won't work properly or that they are going to tighten up. I actually have lots of muscles things all over. I get twitches all over my body but mostly my leg muscles twitch a lot. I can tell a big difference if I am overly tired. I wouldn't categorize this as headaches either although I do sometimes will have sharp pains that only last for a few seconds. I just recently went to the eye doctor and he said everything looked fine from his stand point. I went to the doctor yesterday and she is scheduling me for an MRI. My mother has MS so with these symptoms and her history she says to do it. I HATE waiting! Why can't they just send you on over so you know what's going on! She said it will probably be next week sometime. My symptoms of this stuff today are worse than ever and I get even function because it has me so worried/or weary. Weary is a good word for me right now. I am so desperate to feel better. It just make me want to cry! If it weren't for my kids I probably would. I just try to act as well as I can for them. I have been so dizzy all day today, too and it had gotten so much better. I also just cannot concentrate on anything AT ALL when I am feeling so bad. I can't do anything to get my mind off it. I will often times just pace the floors unless I start feel faint or my heart starts to race. My BB does a pretty good job at keeping that symptom under control. I even sometimes feel like am I in another world. Does that make sense. That feeling kind of freaks me out too. See I am literally just a mess!!!!!! WHY?????? I just wish I could handle it better!!!!! It's just this head stuff I really can't stand. I have had hardly any relief from for for a week. Yesterday was my best day....go figure, since I went to the doctor. It was still there though. Could I have neuropathy in my head? If so would it even cause this pressure feelings? I am so sorry! I hope to be an encouragement to people on here some day!

My doctor has also ordered a 24 hr. urine Catecholamines, Metanephrines, Vanillylmandelic Acid. I haven't started it yet because the directions said I need to stop certain things (i.e..bananas, which I eat 1 or 2 of everyday) for 72 hours prior to the test. I also read that certain anti-depressant medicines can interfere with the test as well. I was suppose to start Celexa today. She didn't mention that it would be a problem but she also didn't mention getting off bananas either (that info was on my direction seet from the lab). I am just wondering if anyone on here knows if the Celexa will mess with the test? Thanks!

I didn't actually vote because I didn't feel I could really answer the second question in the Poll, but here's what is helping me, I take a bb and it works quite well to keep my hr manageable, I just wish it helped with all the other POTS symptoms! I also salt load and drink a 20 oz. Gatorade everyday. I do try to see how many days in a row I can go w/out Gatorade sometimes before I start to feel really yucky and it's never more than 2 or 3 days that I can do without it. I really can tell a difference in how I feel with Gatorade. Thus far those are the only things that my doc has had me try. I am starting Celexa tomorrow though so hopefully that will help some symptoms as well.

My doc ordered a 24 hr. urine sodium today. I didn't think to ask her at the time, but should I stop drinking gatorade and eating the extra salty stuff? If so how long should I stop these things before I start the urine catch?

Is there anyone on here who "shares" POTS with a child? I have read that it can run in families. I have POTS and my husband and I believe our 12 year old son may have a form of it, or at least we are cautiously watching him as he's reaching his puberty years. He had a series of illnesses last winter and was sick A LOT. He lost at least 10 lbs. and hardly ever ate, and would daily complain of feeling sick, weak, and like he was going to pass out. He had some weird liver enzymes come back but it never amounted to anything and resolved. He also developed terrible anxiety for no apparent reason, which as a parent is heart breaking to see. Especially when this child was as outgoing as they come prior to all of this. He seems to be predisposed to fainting for what ever reason but until recently I could explain away his fainting spells. However around Christmas time he got up from the couch at my moms and came over to me and said he felt very dizzy. He leaned over on me but I didn't realize he was actually fainting and just moved a little and he hit the floor like a lead balloon. Then it happened again yesterday but he didn't completely black out this time. Anyway, I don't think he really fits the criteria right now (especially the hr increases) but I have seen people on here talk about the fact that after they looked back they saw signs of it early than they realized.

I have never planned one but am planning to run one in April and May and I am a nervous wreck about it!

Are you nauseous all the time or is that a symptom that comes and goes? I am not always nauseous but I have "spells" of nausea. I seem to struggle with it in the mornings more than other times of day. I can usually only get a banana down or something very bland but then as the day goes on I seem to get over it. It's not usually severe but enough to make me feel yuck. But you said something that struck a cord with me. On Monday I woke up and felt VERY nauseous and I even said to my husband while still lying in bed that I felt like if I moved I would throw up. I was also having stomach cramps. My husband even asked me if I thought I was getting sick or was it POTS related and I said I felt like I was getting a virus. But as the day went on I began to realize I wasn't getting sick at all and had a TERRIBLE POTS day. Symptoms were awful that day.

I am not sure it's sinus related but it's definitely pressure in those areas sometimes. I have no sinus symptoms at all other than these weird pressure feelings. They happen in lots of different places on my head though, not just my sinus area. I sometimes feel like someone is trying to push something through the bridge of my nose or trying to push my teeth out of my mouth. It doesn't just happen on my upper teeth either. I happens on the lower as well. I feel like my jaw/facial muscles are very tight sometimes. I also get a squeezing sensation sometimes too. Or a tingling/creepy crawly feeling. The creepy crawly feeling only happens on my head but I will get the tingling on my face as well. I have had some of these symptoms for a while now but It has been pretty constant since Friday of last week. Honestly....I hate going to the doctor and telling them this stuff because it sounds so ridiculous, but it is driving me crazy! I did read some about tension headaches and it talked about a "pressure" feeling, so maybe it's something like that. I just wouldn't use the word "headache" to necessarily describe my symptoms so I just don't know. UGH! I have looked at some TMJ stuff but I don't seem to fit the criteria for that but I guess it could be??? I have no idea, I just know she's going to have to do something or I'm gonna go batty.

Thanks! I think I have confused my self. Dr. Black and Dr. Lapp are in Charlotte? That's only about 2 hours from me. That might be worth my while. Thanks so much!

This is a great topic because I have been having an absolute terrible time getting dinner on the table and if I can actually get it made there is no way I am cleaning because I am exhausted. I use to do once-a-month cooking (pre-POTS) with a friend. Well, we actually did it for 6 weeks at a time. We did breakfast, lunch and dinners for 6 weeks! I can't do if for a day now! My husband is great about going to the grocery store and he's been really good about helping with supper lately but I can tell he's a little frustrated with how things are right now. I makes me feel bad for him and me!

So this particular symptom is still bad! I am going to see my doc on Thursday. I told my husband today that I just can't take it anymore. I have got to get some relief from what ever is causing this. I honestly feel like someone/thing is trying to push my teeth out of my mouth, but again I have NO sinus issues right now other that this weird pressure feeling. It is painful sometimes but not mostly. My jaws are also feeling weird with this. It's not just in my sinus area either, it's all over my head. I do not understand but I sure hope to get some answers this week. It's freaking me out and making my anxiety level go up way too much! If anyone has any thoughts about this, I'd love to hear them (or read them in this case:) Thanks!

I live about 4 hours from Chapel Hill. Is Dr. Lapp worth that drive? I mean, in your opinion, does he know enough about POTS to make it worth my while? (although hubby probably wouldn't put up a fight at all about me seeking out a doc in Chapel Hill. We are HUGE Carolina fans! We were actually in Chapel Hill 2 years ago when my symptoms were so bad but we had no idea what was wrong with me yet. We were at a basketball game and I was shaking all over, then got so dizzy and faint that we had to get up and leave (That's when I knew I was REALLY loved! When my husband was willing to leave the Carolina game because I felt so bad. I had to sit in a chair out front for a few minutes and some EMT's attended to me. They really wanted to take me in but I declined. Looking back, I almost wish I would have because maybe I would have caught this earlier and would have been able to see someone who really knew what they were talking about. If they only see 2 patients a day, how long does it take to get in with them? I can't believe they spend 3-4 hours with you! (Although my GP has spend 1-2 hours with me more that once.) Have you considered seeing Dr. Daw? Keep me posted as well if you find anyone! It just goes to show you how few and far between these POTS specialists are because NC is no stranger to modern medicine and state of the art healthcare facilities. I hate that Dr. Kline is no longer in practice. Not that it matters or is any of my business but why did he/she go on leave?

This is so interesting to me! Most of my labs are normal. Two years ago when the bottom fell out I had critically low potassium levels, which have almost identical symptoms to POTS. I ended up in the hospital and they got my potassium levels up to normal. Continued to have basically the same symptoms for quite some time. My doc thought I had POTS then but a cardiologist said no and didn't see a need for a TTT. I did eventually get better, like a light switch it was all gone. Fast forward two years and after the flu in December all the same exact symptoms have come back but potassium was completely normal but my TSH levels are a bit low. I have suffered with thyroid issues for about 14 years. They, however, are not low enough to cause all the symptoms I am having. Now Doc and me are convinced it's POTS. Still haven't had the TTT just because I can't stand the thoughts of going off my bb because it helps so much. I am about to get up enough nerve to do it though. I think for my own peace of mind I just need to have it confirmed, even though all signs point to that. Aside from some others having low potassium as well, the MOST interesting thing to me is that some of you have had abnormal Liver enzymes. I have had this happen to me twice. Once about 8 or 9 years ago. I was VERY sick for days and days and finally had to go to the doctor. When I got there my temp. was 106.1! Needless to say, that had the doctors office hopping and I was almost delirious. Anyway, during that time they couldn't find anything wrong with me except crazy high liver enzymes. They chocked it up to a virus attacking my liver. It took me a very long time to recover from that . Fast forward again and last year I had another crazy flu-like illness without the cough/congestion. I have honestly NEVER hurt so badly in my life. Again.....CRAZY high liver enzymes, but in no time at all they came right back down. Thus far my GP or my endo can't tell me why this has happened. Those of you that have had high liver enzymes, do you know why? Can that be related to POTS at all? Oh I did also a couple of years ago during the big onset of POTS symptoms have very low D, also.

Can anyone recommend a POTS specialist in NC? I saw that there were two Doctors listed on your Physicians List. Dr. Black and Dr. Kline Has anyone on here seen either of them? Thanks!!!!

Hi! Just wondering if others could share their struggles with POTS and anxiety. I have dealt with anxiety for years (before POTS). Now that my body seems to be freaking out with POTS symptoms I can't decide if I'm having terrible anxiety or terrible POTS symptoms sometimes. I just know that on days that I feel really bad from POTS symptoms I seem to spend a lot of time worrying or feeling anxious. Do the two just seem to go hand-in-hand? Thanks!

I have days that I just can't concentrate on any one thing at all (not great when you are trying to homeschool). Also, on bad days, I feel like my reaction time to things is much slower than normal. I almost feel like my hands move in slow motion. I also find myself staring into space often, it is especially hard to focus when I drive sometimes. I don't drive very much at all right now because of that and dizziness.

I can't tell you how much I love this post! Thank you so much for sharing!!!

I was wondering the same thing! I just saw that a few days ago!

Thank you guys so much! Your kind words are so helpful. After feeling so tired yesterday and laying in bed all evening I couldn't go to sleep. Don't you just hate when that happens! Soooo tired yet can't sleep. It was about 2 am before I went to sleep. Normally that would mean a bad day to come, but strangely, I had a good day today. Very thankful for that. I need to clarify....The 2 year old and 9 month old aren't mine. I keep them 4 days/week, so it's like they are mine. We have them 40 hours in 4 days. I have had them since the 2 year old was 3 months old and even earlier with her brother. My husband and I have the discussion daily about weather or not I can continue to keep them. I hardly had them at all from Thanksgiving to Christmas, some because they were out of town but then partly because I became so sick. We are very good friends with their parents and they are so accommodating when I am sick. Our big issue about that is the fact that they pay me pretty and we need the money so I just keep hanging on, hoping my POTS disappears like it did last time. I guess one thing I have had a hard time dealing with now is that I THOUGHT POTS was gone. I got it 2 years ago (although we now believe I had some form of it for a lot longer than that) and was sick for a long time, but it did go away and I was great! I had some issue last winter as well but they were nothing compared to a couple years ago. Then BAM....all the sudden here it has taken over my life again. It makes me think there is someone always waiting around the corner to jump out and grab me and I will just never know when, figuratively speaking. Bebe127, I will certainly be checking out those book suggestions, thank you! Glad to see another homeschooler on here. Alt, I am sending you a PM Thanks so much everyone!

Whew! Today has been one of those days that I just think I am going crawl in my dark place and hide! Do any of you ever feel that way? I have been so frustrated with feeling so tired today. I mean I feel tired most every day, but today it really got to me. Sometimes I wake up feeling yucky but sometimes I will wake up feeling pretty well...until about mid morning and then the whole rest of the day I can barely put one foot in front of the other( there are a lot of POTS symptoms I can deal with but this fatigue is the worst for me). That's not real conducive to homeschooling 3 boys and having a 2 1/2 year old and a 9 month old every day. Since my last flare up some symptoms have let up but the fatigue is not getting better and it's making me crazy! I am getting through my days but barely and not REALLY getting through. I am making it most days without staying in bed but I feel like crud otherwise. I feel like my kids are living on frozen pizza right now and I hate that!!!! Then that gives me mommy guilt. It's a vicious cycle and I hate when I get like this. I have literally been in the bed since about 5:30 this evening. My oldest son and hubby made supper and I got up to eat and then came straight back to the bed. Then during supper one of my sons prayed for me to, "feel better from whatever is making mom feel sick." And while I am so thankful that I have kids who pray for me, that made me sad, too. It was beautiful here today, about 65, which is unheard-of where we live, and so we went outside. I was only out there for a few minutes and my legs were shaky and I was short of breath and just had to come in and sit down. I did finally force myself to sit outside with kids for a while but it's just so frustrating! Hubby has asked me 50 times what's wrong and I just kept telling him I didn't want to talk about it. He does the best he can to understand but still I found myself wanting to be alone tonight. But...then....I feel bad about that, too! UGH! Thanks for allowing people to vent on here. It's helpful. Hoping for a better day tomorrow (even though are suppose to have severe weather) .

Here's my story about Gatorade. I had the flu in December and have had a bad flare up of POTS symptoms ever since. Doc told me to drink Gatorade. I didn't know why she said that because I didn't know about salt loading at the time. My husband and I just thought that she thought I was dehydrated. He got me a 32 oz. Gatorade that day and I got about 1/2 way through it and thought, man, I feel a little better. Told my husband, and so we both just thought maybe I WAS dehydrated. Didn't drink one the next day and had a really bad day. Then the second day after that I was still really really symptomatic. About half way through that day hubby said, "I'm going to get you a Gatorade!" Another 32 oz. bottle, and again about 1/2 way through I was telling him I really could tell a difference in how it made me feel. Now, don't get me wrong, I wasn't back to daily activities or anything, but there was marked improvement in how I felt. I have had a 20 oz. bottle almost every single day since. Now I am reading all this stuff about how bad Gatorade is for you and it's freaking me out. I am going to try some of the other suggestions others have on this forum because I am not wanting to quit that type of drink all together. My body seems to really respond to it. Oh, btw, It was just a couple of days after my Gatorade experience that I read about salt loading and the light bulb went off as to why it made me feel better. I really hope it helps with some of your symptoms. It's so nice when something so simple is helpful because more often than not it's difficult to find things that help.

Oh my! Y'all are freaking me out talking about Gatorade! I have been drinking a 20 Gatorade almost every single day since the first of December. I see a lot of people say that they can't tell that it's doing anything for them, but I can see marked improvement when I drink it.

yes, I get this way, too. I haven't really been able to pinpoint a trigger either.

HI! Thanks for your responses. My doctor is just my regular MD, albeit I could not possibly love her more and cannot express what a wonderful doctor I think she is. She has diagnosed me with POTS by just symptom checking and doing orthostatics in her office multiple times. She did suggest I have a TTT and said that would be the way to know for sure. She started me on a BB in the meantime and it brought my hr down so well that I didn't want to have to stop it to have the test done. She said she was ok with treating me as though that's what I have as long as I am ok with that. I have had basic blood work ups like a BMP, thyroid labs, that kind of thing. Also checked for Addison's disease (which was negative). I just keep seeing people talk about all these labs they've had done and all these different docs they see. I also see that a lot of people have underlying reasons as to why they developed POTS and that's not something she's really discussed with me. I tend to think mine is more of a sickness/virus issue. I have had some crazy illnesses over the years. I did have mono really badly in right after I graduated HS and also tested positive for EB (which is where most mono comes from, I believe.) and my last flare-up has come directly after having the flu. It's just, as much as I love her and think she's great, and am also impressed that she even knew about POTS, I don't think she has the understand that those of you on here talk about. Just wondering if I truly need to seek out a specialist or just work with her and guide her with knowing the right things to check for. My problem right now is that I am not sure what I need to tell her to look for.