boymommy3

I am wondering if any of you can offer suggestions of helpful blood tests or any kind of testing that I could suggest to my doc. She is very open to helping me and does have some knowledge of POTS, but from what I am reading here, she doesn't really have a full understanding.

I agree with the others. A LOT! I don't actually have this symptom all the time, but at it's worst, I might go every 15-30 minuets. Before I knew this was a symptom of POTS it completely freaked me out. A strange thing about me when I do this (not sure if others do) is that it will be COMPLETELY clear. No color what so ever.

Hi Ash! I am pretty new here, too. I have been so thankful for the wonderful information on this site. It truly is invaluable. I am so sorry you are having to go through this without the support you need. I can sort of relate but not to your extent. I have had thyroid problems for many many years and so every single time I would start to have strange symptoms my husband, mom, and friends would just say, "it's probably just your thyroid". I even made myself believe that for a long time. Thankfully, now that we (husband included) are positive POTS is what I have, I feel a little more supported. Especially by my mom. She has MS and so very many of our symptoms are the same so she really can relate. I still don't really think my friends get it. I can, however, totally relate to the jealous feelings. We have 3 boys and I get so sad sometimes when I see all the things that other moms are doing with their kids and places they go, and I am happy to get them to co-op, piano, and church some weeks. I feel so guilty sometimes. Like I am failing as a parent. I know in my heart that isn't true and it's just satan's schemes to keep me down, but there are times when I give into those thoughts and really feel bad about everything. I also get jealous of a friend of mine who seems to have the energy of the Energizer Bunny and never ever seems tired. Just know that you aren't alone. I hope you find the support, encouragement, and answers here that will help you through this, I know I sure am. God Bless!

before bb resting was 100-110 standing was 130-145ish. on bb resting 70's-80's standing 90's-100. However, it takes very little moving around to get my hr well over 100.

One blood test they should run is your TSH. That is your Thyriod Stimulating Hormone. They can also run something that is called Free T3 and T4. I think for most doctors, the protocol is to just check a TSH first, however, if I were you I would just request that they do all 3. It will just give you a better picture. It's not a big deal at all. The other two I mentioned are also measures of how well your thyroid is working. If your TSH is LOW, that means that the thyroid levels in your body are too high, which can cause high heart rates. If your TSH is HIGH then that would mean that your thyroid isn't working enough. Which in your case wouldn't make as much sense if your hr is high. Hyperthyroid can cause a myriad of other symptoms as well, but unless it's out of control then you might must feel that high hr. Do you ever feel jittery? It is, however, very treatable! I would hope for you that it would be something along those lines instead of POTS. But if not, maybe you'll be fortunate enough not to deal with some of the other crazy symptoms that POTS can cause. You do seem to meet the criteria for POTS though if your hr is going form 70-100 just from standing. Keep us posted. I will be interested to see what your doc says. I have dealt with Hyperthyroid issues for going on 15 years. Which, btw, isn't normal either so don't assume that if you happen to be hyperthyroid that you'd suffer with it like that. I have been a very confusing case to my doctors.

Banana is one for me. I eat one almost everyday. I don't know that it really helps me feel better but It just seems to be the only thing I can stomach sometimes when I am dealing with the sick/nauseous feeling. I most often have that in the middle of the night, early morning. However, if I have it when I wake up it will often be evening before it goes away. I have no idea why! Also, I have had really good results with Gatorade. My doctor just told me back in December to start drinking Gatorade and It blew my mind the first few times I did drink it. I noticed marked improvement. I have pretty much drank a 20 oz. Gatorade first thing in the AM everyday since.

I am not sure the reason, but I have this issue sometimes as well. I actually have lots of muscle issues and would love to hear from other POTS people about any muscle issues they deal with. I just recently told my doc that sometimes when I wake up if feels like I have done a leg work out but I haven't even gotten out of bed yet. They will feel somewhat sore and really tight. I also get muscle twitches like crazy!!!! Even in my face. I will also feel muscle tightness in my legs, arms, hands, and face. Sometimes my jaw muscles will really bother me and I will feel like my jaw isn't opening and closing properly but It's not like a TMJ issue. It can be so hard to describe!

Oh boy....I think the answer to this changes. I have a long history of strange illnesses and uncontrollable hyperthyroidism, but POTS was not in the picture until about 2 years ago. I have had problems with my thyroid for almost 15 years, so since that has always been documented EVERY. SINGLE. TIME. something came up we all (doc, husband, family members, even me) attributed it to thyroid. I now believe I have had some underlying POTS issues for much longer than 2 years. However, two years ago I guess we would consider that to be my onset. I hadn't been well for months, but was trying my best to keep up. I have 3 boys and we homeschool. I have a very busy schedule. But after months of not feeling well, I finally crashed! I was bed or couch ridden for weeks and weeks. I can specifically remember not even being about to eat a meal at the dinner table with my family for over 2 weeks. I couldn't eat, let alone sit there. It was absolutely horrible. For me this is when a strange thing happened. One day, like a literal light switch I was better, like never felt better in my life! So "functional" for me then meant that I really did get back to my old self and maybe even better. Over time I had some bumps in the road but generally stayed well. Now, two years later, here I am again.....I hadn't been feeling as good for a while now but just attributed it to our busy schedules. All of my family got the flu early in December, me included, and since I have crashed again. I was so sad!!!! It has been weeks and weeks now. My doc has started me back on a bb and I am drinking Gatorade everyday and while my "functionality" has improved some since Christmas, I have yet to have that light switch moment (which I keep praying for, but know it may not happen). For now functional to me is once again being able to accomplish anything. At this point it's a daily struggle to feel well and pretend that I am ok. The frustrating thing for me is, I feel like it's a constant 2 steps forward and 3 steps back. I will have moments that I will start to feel more like myself and "normal", good days and bad days. And then BAM... I feel horrible again. Actually it happened today. Didn't have a good morning, muscles twitching like crazy, but after I drank my Gatorade I felt a little better. We all got ready to go to Pizza Hut to meet some friends for a birthday party. I was feeing prettyl good. We went to Michael's and I even remember in Michael's thinking to myself, "oh it feels so good to be out!" I haven't been out hardly any since December. Only when I have absolutely had to be. And then BAM...we were leaving Michael's and I started feeling bad. So exhausted! I couldn't get to my car fast enough. I thought I was going to fall over at any moment. I just wanted to be home. Now I am having lots of muscle twitches again this evening and just feel like I can hardly move. So, one day functional might mean being able to get out of bed, and another it might mean being able to cook a meal. Ideally, to me, however, it would mean being able to live normal life. I pray that's what will happen for every single one of us!

Hi Issie! Could you explain your head pressure to me and is a POTS symptom or something to with mast cell?

alex74alex, you are right, this is a blood sodium level. Should I ask my doc to do a 24 hr. urine sodium? The only thing right now is that I have been drinking a gatorade and also eating more saltine crackers and chips since the middle of December so I am wondering if that would skew the results since I have upped my intake? Is this something that should be checked often?

I just started a post recently about something similar. I definitely have more symptoms/relapses in the winter. I don't notice an issue with rain per se but winter in general seems to be much worse on me.

So I was looking at some of my lab reports this morning and noticed that my sodium levels were not low at all. Actually, they are borderline high. 144 and I saw something that said 135-145 was normal. My doc has told me to drink Gatorade and I have noticed a marked difference in how I feel when I do drink it. I have also upped my salt intake. Should I be doing this??? Should only POTS patients with low sodium be the ones who are salt loading??? If my sodium levels are normal then how can I explain the fact that Gatorade makes me feel better??? Also, how important is it for me to keep a check on my sodium levels? How often do others have that checked? Thanks so much! I am trying to piece all this together but it is like the never-ending puzzle!

I can totally relate with the anxiety issues. I have suffered with terrible anxiety for a very long time and now I am finally starting to understand why I have such a strong fight or flight response. Do you take medication for any of your POTS symptoms? How under control are your symptoms?

Can POTS cause sinus/head issues? I am not prone to sinus problems at all but since this last recurrence of symptoms I keep getting these really weird pressure feelings in my sinuses and head. Sometimes I get lots of pressure in my nose but I have no congestion what so ever and haven't been sick since December (flu). I have also had lots of pressure in my temple area too and also just in my head in general. I had it really bad all night last night while trying to sleep. It is sometimes kind of painful and I get pain in the back of my head, but mostly lots and lots of pressure. When I have it in my temple area I will also have some tingling/numbness in that area. Actually, I have had tingling and numbness in my head too.

I am new here. I have been so excited to see that I am not alone in this mess that I have been posting left and right. Is that bad forum etiquette for a newbie? I have never actually even posted on forums before, so this is my first one! Thanks!

Yes, see....SeattleRain had a much better explanation! ) SeattleRain....I get throbbing/pounding feeling in my head when I stand sometimes, too. I don't generally have high BP though. Is our bp high when that happens?

I just started exercising this week. 3 days on the treadmill doing a walk/jog taking about 20 minuets. I had a terrible night last night and wondered if it had anything to do with exercising. I do know that during my exercise times my hr got high really really fast. After a very light jog for 90 seconds my hr was 171. That happened the other two nights I exercised as well but not quite as high. Also, the very minuet I stop I get crazy dizzy for a little bit.

Well, Not sure I have any great advice here. I can just tell you how I feel and what I think about it. I am pretty new to all of this so others may have much greater insight than me. I am on a BB to keep my hr down and it works quite well. I am not have the racing/pouding much at all since I started it (although I don't think my hr is as low as yours). I also do not have low BP, however, I too will have very lightheaded/dizzy spells, terrible weakness, and sometimes my fatigue is borderline exhaustion. Here's my thought about it all. While yes, those are all symptoms of low BP or high HR, they can and are still symptoms of POTS in general. Since our nervous system basically controls how we feel everything, it is that very system that can make you feel those symptoms as well (it seems to me that our crazy confused nervous systems seem to do what they want with no rhyme or reason). That is a very simplified, elementary explanation I have come up with. I am quite sure there is a much better, more in depth answer here, but I am just not well enough versed in this syndrome to be able to give one yet. I am so sorry you are feeling that way. I get so weary when I have the constant lightheadedness and weakness. I will also say that for me those symptoms, like many others, seem to come and go so hopefully you will experience some relief as well.

I also wonder how many people don't get the visible signs of blood pooling at all? I don't recall every really having visible signs of blood pooling.

Joyagh, Every POTS patient does not faint. I have never fainted and I think I have read of lots of other people on here who don't faint.

I have also been dealing with some pretty bad lightheadedness (though it doesn't sound as severe as yours), but my BP isn't low either. As a matter of fact, when I went to the doc in December it was 127/86 and I never actually run that high. I usually run 110-116/76. Yet, I was feeling lightheaded/faint constantly. I hope you get some relief. It really is a terrible feeling.

Katybug... I looked into the Raynaud's Syndrome and I don't think that is my problem. However, I think it's entirely possible my husband has that! He has this thing with his finger/fingers sometimes that they will turn completely white, get numb, and just ice cold to the touch.

I tried propranolol some years ago, for hyperthyroid symptoms, and I couldn't tolerate it either. It just dropped my BP so much that I would almost pass out and I had littles at that time, ages 3, 2, and newborn. I was, however, fortunate to find something that helped. I also agree with everyone else. If you have anyone at all you can call on for some help, please do. A woman's body/hormones can do crazy things after giving birth and to have to compound that with POTS is a miserable mixture. I pray that you will get relief. I know there have been many times in my life dealing with health issues that I couldn't see the forest for trees (as my mother would say), BUT....Joy comes in the morning and I am going to pray that your joy be restored. Blessings

Wow! Well, I am glad I'm not the only one. Although I hate that others have to go through this awful stuff! I kept reading about all these people who can't tolerate the heat at all and I was starting to think I was the only one. I really don't seem to have the aversion to the heat like so many others. I also don't know that I have ever really had visible signs of blood pooling like so many others talk about. Maybe in my hands some. Are there some people who don't experience that symptom as well? I will say that I don't think I handle the heat as well as I use to, but it's nothing like many others. I do sweat more than I use to and I can feel my hr rise a lot of the time when I am outside but it doesn't bring on the severe symptoms that winter seems to. I can't let the heat in my house get below 70 (preferably 72 but hubby melts when I have it that high), or I absolutely freeze. And often times once I get cold I can't get warm unless I go take a hot bath, which I often do. I will also sleep in jogging pants, socks, and a hooded sweatshirt sometimes! But the crazy thing is that sometimes I go through cycles and totally feel like I am melting and I wake in the night soaking wet with sweat. It really is the most confusing illness when your symptoms can do a complete 180 and it be completely normal!

I am so glad to hear that I'm not the only one. Like I said, it hasn't happened in a while, and actually I can remember that being present when other POTS symptoms weren't, but it is the strangest thing when it happens.