gdomaracki

I did pass out after 20 mins on the tilt table test, and although it is scary, you must focus on the information your cardiologist can get from the test and that if your going to pass out..the best place is the hospital. Easier said than done, i do suppose! It is also good to hear that your pains are not heart related, although I'm sure you would like to know where they are coming from I'm sure. I get this sharp pains in my side and I actually can't breathe for the few seconds that it happens, but then it goes away?!? Pots im sure, seens to be the reason for all my crazy symptoms. Hope you get rid of that terrible pain soon dear! Nicole

Numbness is normal for us potsy people! I'm having trouble with my jaw going numb these past few days, makes eating a little difficult. Nothing really to worry about though! Nicole

I have been suffering from hypoglycemia since I was little. Around age 14, the docs said I had to cut out all simple sugars (thats your candy, chocolate, etc) and white flour also. I have been on a strict high complex carbohydrate diet for years and it helps keep my blood sugar from crashing. I also eat small meals or snacks every two hours to keep my sugars up. This depends on how severely you have hypoglycemia. My best suggestion would be for you to check your blood sugars and see how you react after eating certain foods. If you notice that when you eat alot of sugar you feel worse, eliminate it. Its really difficult cutting out sugar from your diet but you will notice a great difference, and avoid your blood sugar crashing. Best of luck! Nicole

Let's just say, I couldn't get up. My bp is very low to begin with and beta blockers throw me over the edge, even with florinef and midrodrine. I think it really depends on whether you have a high blood pressure issue along with the tachy. I on the other hand have inapp. svt, but I need that to keep my blood pressure up. Everyone is different though!

Falling asleep is half my battle, and the other half is staying asleep. It seems I can't stay asleep for more than 2hours at a time, I think alot of that has to do with my night sweating and vivid dreaming. Oh, you would think my brain would like to rest but its constantly on the go. I myself, don't want to have to take sleeping medications so I have come up with alternatives. Boring myself, as silly as it sounds, tends to work most of the time. I have games on my cell phone that I normally play myself to sleep. I have also tried watching television. For some reason, it tends to bore me to sleep also. I know some people it keeps up. Sometimes, I also get up and try to tire myself by doing some cleaning/laundry. Man, the neighbors must think i'm crazy!! Vaccuming at 3 in the morning Relaxing helps to, but its so hard for me to do. Hope you find something that helps, and if need be sleep aids might be of help to you! Nicole

If I could do this without medications, I would! When I get a new medication I always do a background check so that I know what to expect, the half-life, and side effects. It's always good to know what your about to put your body through, even though many of us experience such adverse side effects. I guess we are special. Like Carolyn mentioned, I choose a day where someone will be home with me. Just in case. It's always good to have someone around, helps ease your nerves. Keeping yourself busy is always a plus. Sitting around waiting for side effects to come about can be miserable. Of course, this is all easier said than done. I too have had bad reactions to medications (beta-blockers), which makes me nervous to take anything and I think we are all justified in being scared. Best of luck with new meds! Nicole PS~My mom basically has to shove it down my throat, I'm that scared/stubborn

This is what I have been trying to explain to my family. They don't understand how the littlest things make me tired, cause it's not like i'm exerting any outward energy. But I definately think that inside it takes alot more out of us to do the simplest tasks. I get this from reading alot too. The words begin to blur and I end up having to read it all over again, cause by the time I get to the end I have forgotten the rest. lol My memory fog is terrible!!! Watching movies does it for me to, I have to make sure to take breaks.

I experience alot of leg weakness also. I am beginning to exercise to build up the strength in my legs to help combat the weakness. Like the others have mentioned, increasing salt and fluid intake can't hurt. If it continues to persist, check with you pcp and see if there isn't a med you can take to help relieve your fatigue! Best of luck Nicole

I can relate. Everyday is a new day, my boyfriend says part of the reason he loves me so much is because everyday is a new adventure. lol. Too bad he doesn't know how hard those adventures are. If you don't mind me asking, were you diagnosed with pots before or after you children? I know I have a few years, but I am concerned about the difficulties raising children with this illness. Nicole

I'm sorry that you had a bad experience changing your schedule ever so slightly like that. I know that I have to be oh so careful on when I take a shower, and sometimes I just give in and take a bath. I'm sure your daughter enjoyed your company and I hope you are feeling better too Nicole

It is not the end, only the beginning. Your in my thoughts and prayers dearest! Nicole

Hello Everyone!~ I know that we all have different severities of pots along with different symptoms and medication interactions but I was wondering about my new batch of medications. Maybe if any of you have used them all together, any positive/negative responses? My batch includes... midodrine 3x daily 10mg florinef 1x daily .1mg therma tabs 3x daily (I am adding them slowly into my original regiment of just 5mg midodrine 2x daily. ) I will add in that I have pots, ncs, and orthostatic hypotension. Along with severe pooling in legs/arms. Thank you for your input/suggestions! Nicole

Take a deep breathe and enjoy the scenary! I'm sure you'll be fine

Susan~ Completely understandable! I am terrified of taking medications and its so confusing to whether or not the symptoms you get are pots or medication related. I know that when I took midodrine I got really sick at first but that was because my body had to adjust to the medication and I wasn't taking a high enough dosage. Its always good to start out at a small dose and work your way up! I also noticed extreme tingling of my scalp and legs. I have also tried beta blockers for my inapp. svt it was just a mess. My bp bottomed out! We all have different reactions, you are your best doctor! I also try and stick it out, but if I feel that it is making me worse I taper myself off. And try again after talking with my doctor. Best of luck to you! Nicole

I understand your frustration, and I'm sure we can all relate. Finding a doctor that knows anything about pots is one in a million. Have you tried researching a doctor in your state here on dinet? That is what I wound up doing and i'm glad I did. I am now seeing a specialist in PA that was actually trained by Dr. Grubb. And the nurses there were SOOO understanding, i thought I was going to cry. I do hope you can find a doctor that has the knowledge in our illness to help treat you. Nicole*

I lost about 15 lbs during the beginning of all this because I couldn't keep food down. I have learned to eat teeny tiny meals all day, not to eat when I'm feeling woozy bc it's a good sign that my bp is acting up and if there isn't any blood down in my tummy to digest my food I end up on the ground, and I avoid eating out especially in crowded, warm areas. It agitates my symptoms. I have put some weight back on, but it fluctuates. I learned not to really worry about it bc there's just so much else to. lol like why my jaw keeps going numb, hehe! Nicole

Jan~ Thats great! My sister plays guitar and I have been thinking about trying it out. I have took up piano myself but boy is it hard just remembering chords, keys, and all that jazz. But I keep trying, I'm hoping it's helping stimulate my brain and keep it from going to mush. My vision has been kinda odd and I've stopped watching tv because of headaches. Glad to hear you found something you enjoy. Nicole

Swimming. That's what my specialist wants me to start doing to help build up my leg muscles cause i'm pooling so bad. But I'm scared. He said not to get into hott water because it will only make me worse, and i'm scared that I will drown. Maybe, ill try the shallow end if i can work up enough courage to get it..just looking at the water makes me sick. lol. Best of luck to you, let us know if it helps you. Nicole

Kimberly~ I'm sorry that your having a rough time right now. The doctors find it so easy to just "blame" unexplainable symptoms on anxiety because the brain is a powerful thing. That is what they did to me about six years ago. They blamed it all on anxiety~ through me on a bunch of pills, which actually helped because one was an SSR. Sometimes used to help treat pot symptoms. After a bad virus in the fall, I went over the edge and am now stuck in this "remission" period. We understand what you are going through and are here for you. In my thoughts and prayers. Nicole

B~ I have had problems with breathing too. Like the others said, it has to do with the autonomic system. Just the other day, I was talking away when all of a sudden I couldn't breathe. I immediately laid down and got my feet up. It took alot of calming down and patience but it eventually went away. The only thing you really can do is try to relax, get your mind off of it. Hope it eases up for u! Nicole

my pulse levels drop significantly when I sit or lay down too. I think mine is because my heart doesn't have to work so hard to get the blood flowing. Hope the cardio has some answers for you Nicole

I get headaches alot too. They mentioned that it might be because of the changes in blood pressure and that if my veins are dialated when I lay down all the blood rushes to my head. I would suggest seeing a doc too. Three weeks with a headache can't be too comfy. Maybe they can do something for you. Hope your headache goes away Nicole

Explain more, I have never heard of this. What kind of sinus problems to you have? I have alot too, maybe it could help me Nicole

Hey, I actually just went to a pots specialist and asked about iv fluids. He told me that giving me this would create problems with my veins and others. I too need to do some research. Nicole

I too get this and it can be so agitating when your trying to go to sleep. It sounds silly but I actually try to tired myself out, or bore myself to sleep so to speak. Keeping your mind off of it is the best thing you can really do, especially is it isn't dangerous. (my svt isn't, they say) I also have my noise makers. lol. A fan for at night, my bird lemon , and sometimes I put the t.v. on too. You really have to distract yourself, because worrying about it just like anything will only make matters worse. I'm not sure if you have worn a heart monitor or not yet, but would suggest doing so. This can help put you at ease, just to make sure your heart is beating regularly. And if you are getting svt/tach, that is isn't dangerous.