boymommy3

I had very low levels of Vit. D a couple of years ago when my POTS first came on in a big way. My Endo had me taking 4,000 I.U.'s of just OTC. I felt soooooo much better after taking it for just a couple of days. At that time I thought it was a miracle vitamin! This go around not to sure though. I have been in a really bad flare up since December. I am going to have my doc check my D levels when I go this week because I haven't been taking my D like I should anyway. I know several people who have had to take extremely large does of prescription D like your doc had prescribed for you. They did feel much better. They didn't have POTS though. Obviously, I am not a medical professional so I can't say for sure, but if your doc seems to think it's ok, I'd try it. It really might help. I have been a firm believer in Vit. D since I saw such a turn around a couple of years ago. I have been sad that it hasn't seemed to help as well this time and I am not wondering if I need more. Have you ever noticed a sensitivity to vitamins before? Do you typically have medication sensitivity? And also, I wonder if there could be an underlying cause maybe making your body not absorb the D like it should. I have heard of that with other vitamins before and once people figured out why they weren't absorbing, they fixed that issue and then the other in turn was fixed. I don't do tanning beds, so if that were me, I'd just try to get some sunshine without sunscreen if possible. I know depending on where you live that can be an issue. Not much sunshine going around where we are right now.

Hi! I am going to see a neurologist tomorrow. I know he's not a POTS specialist. I am in NC and there are none here in the entire state, but maybe it's at least a starting place. I was just curious if anyone can give me some tips about what to expect and if there are specific things I should ask. Thanks!

You might try putting honey on them, if you can keep from licking them! LOL! Honey has many healing properties. We use it like Neosporin. It needs to be local raw honey though. You might also try coconut oil.

Thanks so much for your responses! I honestly don't know what I would have done if I hadn't have found this forum! The burning sensations finally stopped sometime later in the morning. It was awful! Something weird..... as long as I sat still I could feel the burning, but as soon as I would get up and air would hit my skin I would get goosebumps. It was so strange. I don't know that I have ever had that happen before. I so hope I can get some rest tonight. Night time is horrible for me right now. I haven't slept through the night in weeks!

I don't have the neck stuff, but for a couple of weeks I had TERRIBLE head and facial pressure. I felt like my head was going to explode. It wasn't a headache either it was just intense pressure. I would also get it in the bridge of my nose, my temple area, and my teeth (upper and lower). No sinus issues what-so-ever. I kept telling my husband that I felt like someone had their fist inside my head or nose or where ever trying push it through. It was literally driving me crazy!!! I couldn't stand it. I felt like I was going insane also. I have no idea what brought it on or what made it go away. I guess it's just another crazy thing with POTS and Dysautonomia. My doc did have me get an MRI ( I was also having numbness, tingling feelings and my mother has MS) but it was clear. PTL! I do have an appointment with a neurologist this week so we'll see if he has any insight. I am so sorry you are dealing with this and I pray it gets better for you quickly!

I get burning sensations on my skin a lot, but I have had it head to toe since last night. I did not sleep AT ALL. Sometimes my skin feels hot to the touch but not all the time. Sometimes I feel super hot but not always. It's never lasted this long before!!!! Everytime I tried to relax and go to sleep I would get this weird pluse/surge??? It seems electrical almost. Everytime it happens I feel my fight or flight response coming on. WHAT IS THIS???? My husband said my bp is 118/88 and my temp is 96.1 CAN ANYONE HELP MY UNDERSTAND WHAT THIS IS????? It's making me feel like I am coming out of my skin. Please, I hope someone can help me with this.

I haven't driven in weeks! When my POTS began two years ago I know that I went at least 6 weeks w/out driving. When all my symptoms suddenly went away I began to drive again. Now this time around, it's been since December since my onset of symptoms again. I have terrible anxiety about driving because I am so afraid that I will begin to feel bad and I just can't bring myself to do it. So there are some days that I think I could drive (yesterday being one) but I just chicken out. However, there are other days that I know I am not well enough to drive for sure! It makes me so sad and makes me feel like a burden. It has begun to be an issue that i can no longer hide from friends. I pray I can get over this and drive again. My family needs for me too!

I am on Metoprolol Xl. I was taking 25mg. in the am and 25mg. in pm but because I seem to have more problems at night a new cardiologist I saw last week told me to take both at night. So, I am taking 50 mg./day....I see that a lot of people on here are so sensitive to medicines and can only take small doses. If I am taking that much why am I still waking up at night with a racing heart? It takes very little for my hr to get up doing other things and I have palpitations. Does that make sense that this should still be happening?

I just started Celexa. I started at 10 mg. but have now moved up to 20 mg. I know it is very similar to Lexapro, so does it cause this weight gain too? UGH!

I have a couple of friends who I talk to at length about it, and my mom. She has MS and so many of our symptoms are the same that we relate to each other very well. However, talking about it to others who aren't in my closest circle, so to speak, I find completely exhausting! I try to avoid it if I can.

alex.....you are right. I do feel that sometimes I just give into the fear and anxiety and when I do that it takes over my whole body. I know it's so important to keep my head in the right place. Some days it's all just so scary though. At any rate, today has been a much better day, physically and mentally. I don't know why, but I'll take it! And I pray that tomorrow is the same! I seem to be on a cycle of one good day and several bad days though. Hopefully that won't be the case tomorrow.

Nights are a Nightmare for me right now! My body refuses to let me sleep well. I am currently wearing a heart monitor for 3 weeks because I have so many more heart issues at night. It's like every time I just fall asleep I get some kind of jolt awake. I will get a really weird feeling in my chest and sometimes my heart races, especially if I sit up. I also tend to get my crazy shaking/tremor/convulsion thingys at night. Then anxiety sets in. It's really ridiculous and I would just love to have a sound nights sleep! Mornings aren't too good either though because I tend to feel sick and weak.I don't have bp issues like a lot of others either so not exactly sure why I feel so weak and dizzy sometimes. My good times tend to be later in the day or evenings. I also start to think that I don't have POTS because I have been dx'd yet, even though my doc really thinks I do. I am currently taking 50 mg. of Metoprolol XL. I usually take 25 in the am and 25 in PM, the cardiologist that I saw yesterday said to try taking all 50 at night before I go to bed and see if that helps any. I guess we'll see. I do know that I had no less than 9 episodes last night that I recorded and then called the number to download it. She said that if it was anything life threatening they'd tell me to go to the hospital.

I get these, but not quite as bad as hers. I have seen this video before and don't care to watch it again. It freaked me out when I first saw it. When I have mine they are mostly in my legs and I tend to get them at night and especially after I have had an episode of tachy. I don't think I have any pupil issues. Mine usually don't last very long but I just went to the ER this week because of my heart racing and because I had an episode that lasted so long. It started the night before and I went to the ER the next evening. It wasn't that it lasted that entire time but it was a lot. Strangely, my husband and I noticed that after about 1/2 bag of fluids they quit. But I came home from the ER and woke up with tacky and shaking like crazy.

I feel like I am getting worse. And I also feel like my anxiety is getting worse. I just feel like I am on the verge of panic constantly which is the worst feeling ever! My doc upped my Citalopram to 20 mg yesterday and I so hope it helps. I just don't understand all of this uncontrollable anxiety. I seem to have a different symptom everyday so many things come and go. Today I have burning feelings on my skin. Not like I am hot but like my skin is burning or sometimes it's almost like that feeling when you use something like icy-hot. And weakness. Sometimes I feel like I am not even going to be able to walk, like my knees are going to buckle. And I don't have bp issues much, so I know it's not that. I am so desperate to feel better. Did go to the cardiologist today and he put an event monitor on me that I'll wear for 3 weeks and also scheduled me for a treadmill stress test next week, but I don't go back to him for a month. I don't want wait that long. I just don't understand all that is happening to me and bloodwork keeps coming back normal. Does the anxiety ever get better?

I have terrible muscle twitches and I don't have EDS or take clonidine. I have all sorts of weird muscle stuff sometimes. I also am constantly clenching my jaw like someone mentioned above. It is so strange and I hate it!

So I had my MRI today and yes I did survive it! : (thanks for all the encouragement) RIght at the beginning I really didn't think I was going to be able to do it and I even began to cry....this was with two .5mg of Ativan!. Anyway the ladies who did it were super sweet and helped me a lot and I made it just fine. It didn't' take anywhere near as long as I thought so that was good. My doc called just a while ago to say that it was completely clean. No MS or tumors. I do know that MS does't ALWAYS show up on MRI but for now I have peace about that. I was way more worried about having the test than the results anyway! On the other hand....the last several days have been miserable!!!! I ended up going to the ER yesterday, of course to find nothing wrong with me. My hr even settled down into the 70's while I was there! Go figure! I even went straight back to the doc this morning. I haven't slept in nights because my hr is trending high even while supine. When I try to sleep I keep getting the electric shock feelings and then wake to a very funny feeling in my chest and then it begins to race. I am still taking my BB which was working so good but apparently not as well now. Also Ativan isn't working like it was either. I don't understand that at all. My GP set me up with a cardiologist for tomorrow so hopefully I can get some help there. On top of all of this I developed a stomach virus in the middle of the night! No vomiting (PTL I hate it worse than anything!!!!) Just diarrhea (sorry tmi) and now tonight I have fever. I am so sad! I don't need anything else to make me feel bad or make my hr go up! Praying that it goes away fast!

bebe127.... I can totally relate! I don't have any great words of wisdom here as I mostly feel the same as you. Just know you aren't alone! My bp and hr are similar to yours and I think to myself all the time, why in the world do I feel soooo weak and fatigued???? I also have been dealing with some pretty big life stressors and I know that makes all these stinking symptoms worse. I always say, "if it isn't one thing it's ten!" I am sorry you are having such hard time and I pray you get some relief quickly! Just know that others on here are thinking of you. Blessings, Heather

Angela....That's interesting. Did you have a lot of neurological symptoms? I am having an MRI on Thrusday to rule out MS. I am having tons on neurological symptoms. My mom has MS so between that and the severity of my symptoms my doc wants me to have it. If you have a clean MRI is there any need to have and EPT test? misstraci....I hope you get some answers! I am in that same boat right now. Suggestive POTS but trying to rule other things out.

Yes, that's helpful. Here's another question.....is a rise in hr a symptom that can come and go like all the others or does it have to be present every time you get up?

Does anyone with POTS ever have their hr level out after standing for a while or does if have to stay up the entire time the person is standing in order to be considered POTS?

Aimes....so do you have MCAS and you think that's where all your head/sinus stuff is coming from or do you believe it could just be POTS related? Like I said before, I am having very similar symptoms as you but I don't believe I have MCAS. I, also have been feeling today like my tongue was swollen or that it was too big for my mouth. I got up in the middle of the night and felt like my mouth/lips were swollen. I even woke my husband up but he said he didn't think so. I really do though, I could feel it and I felt like I could see in the mirror. It was gone this morning. I am also having a lot of muscle issues all over as well. It's all so unnerving! You said earlier in your post about not being able to lay down. I kind of feel that way but I can lay down too. I notice the symptoms not matter what I am doing, however, I too often pace the floors. I also get very cold very easily and have a hard time warming up. I, too have some of the sweating issues. I don't think I really have the flushing feeling that I see the MCAS people talk about. I think mine is very minimal. I will feel like it sometimes or think I maybe notice it but it's never that bad. My mom did tell me the other day that my face looked flushed. I am just now trying to understand POTS so the whole MCAS thing is a bit of a mystery to me. It all just so crazy!!! I can't seem to do anything for very long. Pace or lay still. I can't seem to be still period. Unless my hubby snuggles me up, then that usually helps me a bit.

GypsySouldNicole......that is interesting.I have had MAJOR thyroid problems for years. Do you know if your sister's thyroid is low or high? Also did all the other doctors discount her thyroid all together? And, was the new doc the first to check her calcium?

Welcome! I am pretty new here also, and this forum has been such a source of encouragement and education for me. Your story is already an encouragement!!!! There are several things about your story that are similar to mine. However, your head/sinus/ear pain/pressure symptom is what caught my eye the most. I have been having that for a while now and it has been totally freaking me out! It is by far my worst symptom presently. Of course, with POTS this is subject to change at any minute. I finally went to the doctor last week because I just couldn't stand it any longer. I am going for an MRI next week but I suspect it's just POTS...honestly though reading that you have symptoms like that makes me feel more at ease.I have terrible anxiety and stuff like that sends me into a tailspin. I just posted about this on here yesterday because I was so weary from it. Several others posted that they have similar issues and that too, made me feel a little better about it. I pray your symptoms will subside and you can get relief.

Kitt....what if your hr goes back and forth? Like say it goes up 30 beats or more immediately upon standing but after a time comes back down?

Thank you all so much! You are really an encouragement to me. It is so hard sometimes. I keep seeing posts about POTS being a mental thing too and I can certainly testify to that fact this messes with my head! I hate feeling like I am crazy sometimes. This forum really been a blessing to me. I have read many times here about symptoms and run across things I have experienced for a long time and never told anyone because I thought people would think I am nutty! I has been so nice to say to my husband that I am seeing so many other people with these strange symptoms! I decided for the boys and I to come have a sleep over with my parents tonight because I just didn't feel I could do tonight alone. I am thankful that I have somewhere to go even though I feel like a big baby for doing it. Badhbt....yes this is my first MRI and I have major issues with confined areas. My mom has already warned me about it and I am SOOOO taking Ativan before I go! My issues with small spaces use to be so bad that I would walk up and down 6 flights of stairs more than once a day to keep from having to get on the elevator. That was totally pre-POTS. I have since been able to overcome a lot of that, but it still creeps up every now and then. Especially right now with my POTS symptoms and anxiety being so bad. Oh, I got a call and my MRI is scheduled for Thursday @ 6pm (weird time!) Thanks again!!!!