Lgamez3

Hi everyone...its Laura. I haven't been on in a while, I have actually been feeling alot better. The 9th med Florinef is seeming to work wonders. I am back to work full time and trying to get a part time job also... life is normal with only a few life adjustments but not many. Mostly just gatorade every day and lots of water too. I was out on short term for almost 6 months when this med started working. So now Thank GOD this single mom is back to work and able to support! I know there is a chance of relapse, and I dread this everyday! But I keep pushing through and trying my hardest to take care of myself so that it doesn't happen. I have dropped a bit of weight, which for me is a good thing, 25lbs in a few months. I think it can stop now though. I cant keep up with buying clothes for work! lol I just want everyone to know that I believe that everything happens for a reason....I believe that I had gotten this illness for a reason at the time I did for a very specific reason that makes perfect sense to me now. At the time I questioned Why Me everyday....but I can say it has made me a stronger person and closer to my family in every way possible. There is a silver lining in every situation. Even one that seems to be as bad as this one does at times. I will try to check in more often..... take care to all! Laura

I just started seeing Dr Gaitonde he is a cardio EP out of Cardio vascular associates of Mesa. I have only seen him once so far, so no real impression other than he is very eager and thorough and wants to "try some new things". He came from Indiana. He said he thinks that there is more too it than POTS and NCS for me. I will keep ya'll updated. I am bummed about Mayo.....I was wanting to be referred there

I too have started feeling better....it is such a great feeling. I just fear that it will go away and I will be back in bed My good feeling came with the start of Florinef. I have my fingers crossed it lasts. I want to go back to work so badly

I have had bad reactions to alot of medications that I have tried. I am now taking Florinef (for about a week and a half now) and no side effects. I actually feel GOOD Now I am just scared that the good feeling will go away....I want so badly to go back to work! Just wondering how long the good will last

I get "short fused" alot too. People mostly dont understand. I wish I had an answer for you, I am really wanting to watch the replies. I was on one med (Prozac) that did the opposite to me that it normally does to others. It made me fly off the handle or just cry (ALOT). It was prob just another med sensitivity. I stopped taking it. thank goodness!

This is a topic I am not ready for but dont have much choice anymore. End of July my short term disability expires and turns into long term disability. Just dealing with the short term is maddening! I cant even imagine what the long term paperwork will be like! Im nervous about this!

I get tired of hearing "when are you going back to work? The economy is so bad, so many people are getting laid off and looking for jobs......what is your work saying??" and also things like "you are trying your 6th medicine? why cant they find something to make it ok so you can go back to work? how many medicines do they have?" Seriously, people don't understand. I have always been a very busy person. I usually work 2 jobs and my main job work 50+ hours a week. that along with all the kids activities keeps me going....well, used to. I really really want to go back to work and be "normal" again! It is so frustrating that they don't understand.

I look normal until I am feeling bad. Most people wouldn't notice, but when it gets bad, my boyfriend and my mother can tell by the look on my face they say. They say I look like I am in a daze of some sort. Other times, I look the same as usual

Guess Midodrine is not for me either.....could not tolerate even 5mg. Cut it in half and it did nothing but keep me awake. Now trying Prozac.......

I just started it a few days ago....5 mg 3xs a day. I had goose bumps from head to toe, very cold feeling (and I live in Az and it is 105 outside) and a headache. Found out that this is signs of overdose of the med so my dr said to cut it in half....I have been doing this for about 5 days now and still feel no change at all. It is frustrating!

I haven't tried any alcohol since trying all of these meds.....plus I joke, If I am this dizzy now, can you imagine what I would be like after 1 margarita???? LOL

My boyfriend and I were talking about POTS this past weekend (even though we talk about it all of the time) and that is exactly what I said, the confusing part is that I look normal to most people....my family at home can see the worst part, but on the outside I look fine. Some days I can get up and get dressed, fix my hair, put make up on....some days I cant. Looks can be deceiving. This is much worse than any broken toes (I too have had 5 broken) because with that I could take a pill and make that pain manageable, with this, Im on my 5th med and it still doesn't seem to be working

I have days that my joints hurt so bad that I can barely sleep. My knees, hips, elbows, and shoulders are the worst.

I was just started on midodrine today.....so far after the first pill (5mg) I'm just cold, with goosebumps (which is a WARNING on the sheet that comes with the med...oh my!) and the skin on my head is tingling. I tried 4 beta blockers and none of them worked, Im hoping this is my miracle med too! How did you feel when you first took this med?

Im a newbie, but I feel this way. Probably more often than you do at this point. I still get embarrassed when I go to stores and have to ride on the motorized carts because I cant walk around, hoping I dont see anyone I know. I want to be able to go shopping with my girls or my boyfriend and be able to go to stores that we like (they dont seem to have the motorized carts or the room for them) so I end up feeling left out. I get mad, angry, resentful. I cry alot. I do try to think on the positive side of things though, there are many people out there that are far worse off than I am so I am very fortunate. I have always been a very VERY independent person, worked alot, always busy. Now this. Now Im the total opposite, I cant work at all, and having MAJOR issues with depending on anyone I like what someone called it an "invisible" illness.....I for the most part look fine (because my pride wont let anyone really see my pain), so most people dont understand why I just dont go back to work, or do the things I used to do....... It does get very frustrating...............

Im new on here too....I was diagnosed after my TTT back in March. I am trying med #5 today....I really feel like a lab mouse trying all these meds but I will keep going till I find one that works for me! It seems to be an ongoing battle, 1 makes me more dizzy and sleepy, 1 makes my chest hurt all of the time, 1 had me running to the restroom (while my chest hurt) all of the time.....I feel like a complainer when I call back with a med update to my cardio..... Then, lets not even get started on the info the short term disability company wants! They seem to graciously extend my claim for 5 days after my next upcoming follow up appt, but want more and more info each time....this time they want ANOTHER 24hr holter done (since my last one was done in march) and they want my Dr to give them a PROGNOSIS.......I bit my tongue, but felt like telling her, so do I!....... Good Luck! Keep trying the meds! Laura

I am starting Midodrine today....its my 5th med that I am trying... my Dr is having me take it 3x's a day....are you saying it made your brain fog worse?????? Thats all I need! I already feel like an idiot most of the time.....this is so frustrating Laura

what is an EP?

I am wondering this as well. I have been out on Short term disability from work for 3 months now and I sure dont seem to be getting better. I have some days that are a little better than others, but never able to function the way I used to. Now the STD company is wanting my dr to tell them a prognosis, what limitations I have that limit me from working an 8 hour shift (I work in sales) and they want another 24hr holter monitor because the last one was done in March.....Believe me, I would MUCH rather be at work than at home feeling this way. I have now hit the "depression" stage, or so I am calling it, in this because now that I FINALLY have doctors believing that there is something REAL that is wrong with me, now I am trying to convince insurance companies too! My father came by the other day and said I should start checking into SS disability just to be prepared. I am wondering at what point does this become a real issue for people. I would love to work, but just showering and getting dressed wears me out (I seriously think I have chronic fatigue syndrome also)! I now know that I have about 3-4 hours a day total that I can do things (not consecutive hours) then I am wiped out. Some days though, I cant even get out of bed. I know the stores that have the ride on carts memorized because I can not stand and walk around a store. I want so badly to go shopping with my girls, but the stores we like to go to dont have the motorized carts so I cant go. Is POTS a condition that is even covered by disability?

I hear so many are on midodrine (?). What is this med for? My Cardio Dx'd me with POTS during a TTT and I am trying my 3rd BB now. When I stand, my heart races but my blood pressure is typically low all the time and does not rise while standing, it actually drops. I wish I could find a med that would decrease the symptoms and allow me to stand longer so that I could go back to work! I am going nuts. The smallest tasks have me laying down gasping for air.

I see. I heard his name but wasnt sure. I live on the other side of the US sooooo......

Hi another arizonan, there are a few of us here, so your not alone in arizona. Welcome!! A long time a go, they put me on dexamethazone (steriod) because they thought I had lupus. I too gained a ton, and I ate like a bird. Having first dropping down to 96 then gaining to 156 in months, I knew it wasn't what I was eating. Having been both thin and heavy, I believe people when they say they don't know why they have put on the pounds. For sure medications can do it, sometimes your hormones aren't right. I turned out to have PCOS/hyperinsulinemia. Steriods were like spraying gasoline on a hot fire. So what meds did they put you on and why? Where here did you get your tilt table done? How did you get to the point that they decided you should have one? It's hard to find the right doctors here in arizona. I got mine done at Chandler Regional Hospital. I went through 2 cardiologists and my 2nd scheduled it and about 15 mnutes into it he looked at the tech and said POTS....I had no idea what he was talking about, or that he was talking about me for that matter...brain fog had already set in haha....I was put on Topiramate for supposed migraines by my neuro and now trying Bystolic for POTS symptoms from my cardio Where do you live?

I keep hearing the name Dr. Grubb.....who is he and where is he (or she)

My legs seem to hurt all of the time lately and the mood swings........ well, my family has started swinging back lol It seems that one minute I am fine then the next watch out! I have noticed that it is worse when I just really dont feel good

I was jus recently diagnosed with POTS. I am having the same problem. I do not have much of an appetite at all, I pretty much pick at food but I am still gaining weight. I am on 2 medications and I did read on them and I know that some side effects are weight gain, but I keep reading on here that most people with POTS have a problem trying to gain weight! Could be a medication fighting against you maybe