Why can't I be on my feet for more than 40 seconds without feeling like I'm going to pass out?!

Is there a name for this? What the heck! Even if I'm not walking I'll get so weak I can't breath and everything starts going black. The funny feeling in my jaw has been back today. I get that weird feeling in my jaw and then I can't breath and I'm going to pass out.

My legs turn into jelly. They quiver with every step, especially on my stairs. They go so numb it's like being paralyzed. It's ******* scary!! OK let's stay on track though that's a completely different story. Just something else that inhibits my ability to be mobile.

But this other thing really bothers me. I feel that fear, the impending doom. I quickly get myself on the floor or to the couch so I won't fall and hurt myself. I've hit the bathtub before passing out and really hurt myself. No good.

I can't even sit in a chair. I'm just too weak. Which is OK I guess, I'm more comfortable in bed or on the couch. But it sucks that not only can I not eat solid food right now, I can't enjoy dinner with my family. Ugh! I'm lonely! I have to sit all by myself smelling the delicious food and listening the lively conversation while I'm on the couch by myself slurping a stupid meal replacement drink.

I really want to figure this out and try to improve. Some days I can be on my feet and sit in chairs all I want. Other days it's impossible. I've taken my blood pressure during these episodes both standing up while I still feel like that and sitting and laying down. Sometimes it's normal, sometimes it's high or low. I don't see the correlation with anything heart related. As far as I can tell anyway based on the fact that I've seen it normal multiple times during the episodes.

Help meeeee!!!! What is this???????

Ya my guy was just here I definitely didn't have a seizure. With my shakes and stuff I'm sure it's not potassium. It gives me a panic attack sometimes. And POTS. ya. Could be pots but my blood pressure is usually fine?!

Hey, IHL, I'm going through this same thing myself for the last few weeks. It's been getting worse as the summer has gotten warmer. I don't have an answer for you but I will as soon as I figure it out. The doctors all suspect it's POTS.

In the mornings I go straight to the kitchen to try to get some calories in me. Usually, before I can even finish preparing the simplest thing I have to lie back down in bed or sit straight on the floor. I can feel all the blood has pooled in my calves and feet, no blood is in my head. Ugghhhhhh! My legs are also doing my lyme symptom again where they feel numb and detached from my body from the knees down.

I had two episodes recently of *halfway* passing out on the street. :-( First I got very woozy, nauseous, and clammy, then my vision started blacking out. I could feel my legs getting weaker and weaker until they started to crumple under me. I had to sit and drink cool water and eat a snack (even though I'd had one in the last hour) and lay my head down. Very SCARY! Both times I felt the symptoms after getting off an elevator and getting off 2 escalators. Seems like vertigo. I made my boyfriend or sister rush to come get me. Now I make my boyfriend or daughter or sister go with me everywhere, I'm so scared of hurting myself while I'm out alone.

All my tests are normal except my white blood count. I think it's still trying to fight the lyme. All my doctors have said I need to see a neurologist and cardiologist, so I'm trying to get those appointments lined up now. Lately I even feel it when I'm sitting in a chair, like I will fall right over and black out. ANd the other night I couldn't sleep all night because I was both nauseous and feeling that I was about to pass out or my heart was just going to stop beating--even though I was lying down!!

The last 4 days I've been feeling a little better: I take a dose of liquid iron every morning and night (Floradix, which is at every health food store--and wash it down with orange or cranberry juice to make it absorb) and I take one Blood Builder iron pill every night. I think it's finally kicking in and bringing my borderline anemia under control. I'm not as dizzy the last few days, but I've also avoided being in the heat and I've avoided elevators/escalators.

Will let you know what happens once I get in to the neurologist!

IHL, good job and I am glad that you are at this point also, seeing some positive things and your body responding. I just wanted you to know that you are in my thoughts and I am visualizing a post from you in the future saying how great you are feeling.

Keep on truckin girl!

My fingers have been turning purple more frequently. No idea what's up with that..

My legs get that lacey purple rash too.

I hate heart stuff. Gives me anxiety. This sucks.

Oh! Georgia that's interesting bc I have episodes of low blood oxygen, and have a history of asthma, and now headaches.

However, I seem to have the headaches regardless . . . .

IHL, you may need to get a pulsox so you can check your pulse and O2 level.

As far as POTS is concerned, blood pressure isn't necessarily a good way to rule it out. Your doctor should take your blood pressure lying down, then standing up. A tilt table test is the best way to dx Orthostatic Hypotension (which is neurally mediated).

Are you hypothyroid? Extreme hypothyroidism can also make you pass out when standing up.

If you have POTS, your doctor can either prescribe Fludrocortisone, which, unfortunately is a steroid (I think it's mild though), or you need to start eating a lot of salt!

Margaret

Hey guys! I forgot all about this post! I lose track of everything, sorry!

Very interesting Georgia hunter! A while ago my doctor offered me a nebulizer treatment with iodine and a garlic extract. He still wants me to do it but I need more funds. All my money is going into iv therapy right now. But I'm open to it for sure. He wants me to have a nose one. He thinks I have a lot of infection in my sinus. I beat MRSA in there with BEG spray already.

Anyway. I passed all the way out about a week ago. I had a seizure day before yesterday. Yuck. My feet have been pretty purple all day. I haven't noticed my fingertips or nose or anything being purple. Mostly just my feet.

I did have that crazy rash on my entire body twice this week but I believe that's unrelated.

I'm convinced it's some sort of circulation issue. Hypoxia is something that my mom struggled with. I'm not out of breath and then turning purple like she was. If that means anything? I have a pulse oximeter to keep track of my o2. I had to get one for my MCAD. With my airways swelling shut I need to know when to use an epi pen.

The lowest I've seen my oxygen this week was 90. And that was when I had the rash really bad. It was super brief. I didn't even feel like I couldn't breath which is weird because I'm usually gasping when it goes below 94 even. Maybe it was wrong? No idea.. either way I had already taken a whole pharmacies worth of benadryl lol!

I had a tilt table test. I didn't pass out but my blood pressure did drop and I lost my p waves. Whatever that means. They had me on some heart medications but I felt better without them. If my blood pressure or heart rate is really high for a sustained period of time I'll take one. I'm allowed to take them as needed. Say my heart rate is at 140 for 2 or 3 hours and won't go down with rest and lots of water then I'll take one. In those instances it usually makes me feel better. I can get myself pretty worked up and scared if I let myself go there.

For now my only update is to get a picc line. And I'm terrified!! I made a post on that earlier today.

I hope you all are feeling better!!!!