Stace915

Hey everyone, my doctor is away until Monday so I was hoping that maybe one of you guys would have some insight for me, this is kind of a 2 part topic. The last few months I have been feeling pretty good, I just went to California for 5 days and the last 2 days it was warm out and I felt pretty crappy. I also did something stupid and decided to drink, which I should not have. I flew home 2 days ago and since I got home I am back to being completely fatigued, dizzy, light headed, and just out of it and feeling terrible.. like I went back to how I was feeling months ago. Here is the strange part, usually my pressure is dangerously low but since I got back its has been 117/75 which is EXTREMELY high for me, and my HR is around 120 standing still. I thought if my pressure was up I should be feeling good... second part of this, I am seeing a new guy and I am so nervous about scaring him off when I mention the words "chronic illness, fainting, hospital" but I know I have to tell him especially since I am having episodes again. my ex of 3 years just coulnd't handle it and didn't even visit me when I was in the hospital so I am scared of the new guy freaking out. How could I explain it to him without freaking him out? Sorry this was such a long post!

Hi last summer was my first summer with pots and unfortunately I could not go to the beach or even be outside for more than a few minutes. I was hoping that this summer I would be able to deal with the heat a lot better but I just got back from California and although the past 2 months I have been feeling pretty good I took a turn for the worse, I am not sure if it is from the heat or flying or both. Definately take gatorade or ice water with you any where you go during the summer. Good luck and feel good!

Thanks, I never wear my compression stockings because they don't usually seem to do anything, but I will put them on for extra procaution.

Hello everyone, I know that this topic has been discussed before but I am flying this week for the first time since I have been diagnosed. It is a 6 hour flight (I think, NY to Cali.), I haven't fainted in a few months and for the most part have been feeling pretty good but of course there are still bad days. I spoke to the doctor and he said to just make sure keep my salt pills with me and stay hydrated but I am still a little nervous. I feel like sometimes you guys have better advice than the doctor, please let me know if anyone has any suggestions. Thank you!

I take Clondine but ONLY before I go to bed. I did a trial with my doctor in the hospital because he was not sure how I would react to it. I felt ok but it made my pressure drop to 70/40!!! So now I take in before i go to bed, I seem to sleep a little better and feel a little less Potsy in the morning. I also still take Florinef twice a day, celexa and salt pills. Hope this helps

Hmmm.. never would have thought about that correlation. It could be a coincedence but I was born a month early and was 5lb 6 ounces.

Hi. I take .1 Florinef twice a day, I started out on Midrodrine but my dosage was increased a few times and I began to have terrible side effects. I could not eat anything at all, and I had heart palpitations and would get flush, feeling similar to before I pass out. So now I take the florinef twice a day and carry the midrodrine as sort of an emergency medication, if there is a day where I am really feeling terrible and overall light headed, foggy I will take it once during the day

I take 40 mg of Celexa, it seems to help a little...

Hi I take florinef twice a day, and have been taking it for close to a year and I have been on the pill for a few years. The only one I know that won't suggest is called Yasmin, because it lowers your potassium which the florinef also does. I am on seasonale and have had no problems

I have the same problem I feel so out of shape because I cant exercise or my pulse and bp go nuts. My specialists keeps pushing swimming, unfortunately there are no pools near me. But it sounds like its worth trying

I took it for about a year, in the beginning it was really helping and the last few months I was in constant stomach pain, so the doctor recently took me off of it. But it absolutely seemed to work for a while

So yesterday I got a bill from when I was in the hospital in Mid. October... last time I was in for a week, I had a co-pay of $100 for the entire week... this time I was in for 4 days and I received a bill for $750!! I called the hospital who told me that my insurance company said my copay was $750. I called the insurance co. and was told that my plan changed and now the copay is $250 per day (full 24hrs) you spend in the hospital. I came to work and fought with my boss who said he knew the plan changed but he didnt know what the copay was.. and what difference did it make because I had to go in the hospital no matter what, and that he paid me for the 10 days I was out so just use that money. I said I was out for 4 days not 10 and I dont have the money to pay the bill and his response was the premiums went up what do you want me to say would you rather pay your monthly premiums and I walked out. I am soo annoyed!! He has been nothing but understanding about my illness thus far and my point was that if our policy changed we should have been notified. Yes I would have known this bill was coming but at least I would have been prepared! Sorry I just needed to vent... so know I have to pay this bill and pray that the hospital will work out some kind of plan with me b/c I dont have the money.

Staci 25 Queens, NY Diagnosed at 24, First with NCS then POTS after a viral infection When I was really bad I couldn't get out of bed for days, could not stand upright for literally more than 4 minutes without fainting. Could not drive, work, dizzy, lightheaded, severe migrianes, insomnia On my good days, I make it to work, can drive locally and even finally go grocery shopping etc..but the fatigue still hits me so terribly sometimes that I am bed ridden all weekend... very frustrated! Didnt work: pindolol (beat blocker made me passout), compression hose, midrodine (proAmintine), reglan Seems to be helping a little: Clondine (only at nite, if i take it during the day pressure drops to 75/40!!!), florinef, celexa and salt tablets

I am on florinef, do you think that is whats doing it? All I drink is water, I haven't gained a ton of weight but still more than I am comfortable with although the doctor says its a good thing

I was at the doctor yesterdayas well, and I also gained weight and was flipping out. He said that the only thing I could really do is cut down on carbs and that most of it is water weight which I need b/c it means I am retaining water. I really want to stop taking the salt pills and florinef but I also wont be able to stand up if I do that, so I don't really know what to do, I guess I'm going to try and eat less carbs and hope that works.

Welcome! Unfortunately I think most of us know exactly how you feel re: not having a name for the illness and no one knowing what was wrong with you~ I fainted the first time last Feb. after having the flu and it has just gotten worse and worse since then, but when no one could figure out what it was I really thought I was going crazy! I finally found a great specialist that I am working with but there are still really bad days and a few good ones in between and I find that "normal" people have a hard time understand the seriousness of this illness because most people have never heard of it. I hope that you are able to find a good doctor to work with (there is a list somewhere on this site for specialists through out the country http://216.149.163.247/cgi-bin/Ultimate.cg...assCookie=true) I hope I helped a little and you dont feel as alone, it can be very depressing sometimes. Good luck and feel good!

I take "Thermotabs", they are non-prescription but the pharmacy has to order them for me. I take 3 of them 3 times a day by doctors order.

Not only do I get migraines.. I have one as i sit here typing. Before I was diagnosed with POTs I went to a neuroligist who ran every test under the sun and said he couldn't find a cause, now that I finally found a hypotension specialist who knows what he is doing he said that the pots, hot flashes and migraines all go hand in hand... there are so many unaswered questions about this illness it makes me crazy sometimes!

Hi I am on .1 Florinnef twice a day along with 4 grams of salt tablets, and I also started Clonidine 2 weeks ago and caffiene. They put me into the hospital to monitor me while I tried the Clondine b/c people seem to either react great or terribly to it. When I was released from the hospital I started taking 1/2 Clon. in the morning and full one at night. The first day I got dressed and ready to go to work and starting feeling light headed so I took my pressure and I dropped to 68/41!! So the doctor obviously told me to stay home. Now I take the Clondine only at night so that if my pressure drops like that I am already laying down, it also seems to help with my migraines... Good luck!

Hi I tried the compression hose but they did not do anything for me so the doctor told me to stop wearing them. Hopefully they will work for you, good luck!

Hi everyone, I went for my first appointment with a dysautonomia specialist on Monday.. after a very thorough examination we decided that the next step is to try another drug called clonidine. I have to be admitted to the hospital for probably 2 nights b/c the doctor said it will either make me feel fantastic or worse than I have ever felt so I need to be monitored for the entire time. I had never heard of this medication before and upon some research it says that its often used for high blood pressure which is the opposite of my problem. Has anyon tried it to treat neurocardiogenic syncope or orthostatic hypertension???

I take Celexa, which is similar to Lexapro and it definatey helps with the depression but also helps keep my blood pressure up. I guess they all effect everyone differently, good luck!

Hi I just found this forum, I recognize some peoples names from the NRDF forum but I just came across this one. I am a 25 yr. female diagnosed with NCS in March of this year. I am back at work now, but I still miss so many days. I was hospitialized for a week in June and since then the cardioligist is just trying to find a medication that works for me. Midrodrine was working but I couldnt eat and then it started to give me heart palpitations, beta blockers made me faint, even tried support stocking. Now I am on Celexa and Florinef as well as salt tablets gatorade yadda yadda. On good days I feel semi-normal but on bad days I can barely get out of bed. I have my first appt with a dysautonomia specialist next week but I just feel like we are running out of options...and I am going to be this way forever. I am still having such a tough time dealing with my new limitations, not being able to go out with friends, drive etc. Anyways I was just hoping that maybe someone had another medication suggestion or any type of suggestion for that matter!!! THANKS!