icesktr189

Congrats! I got pregnant 2 years after diagnosis and did okay first trimester, good the second, and terrible the third. My POTS was really controlled before pregnancy ( I could drive, work, ect) and by the 3rd trimester I was bed bound again. After birth I did pretty well for 6 months and then went downhill fast. My daughter is almost 2 and I have not been able to function since. I have just decided to apply for disability and hope one day I can become functioning again. Hope you start to feel better and try to enjoy it!

Okay this is pretty random and I should probably stop thinking too much at night when I am bored but... Do you think having dysautonomia is the hardest thing you have ever experienced? I see all my friends talking about how hard it is to raise children, to make a marriage last, and go to college..ect. However, I really feel like nothing even compares to dealing with this illness, like they are not even on the same wave length. Now dont get me wrong, I think being a mother can be very challenging sometimes, but I personally think it would be 100 percent easier to have 15 children, than to deal with POTS every day. This is kind of like when people complain about a simple cold and we go through this all day, everyday. I guess I just really miss the care free life and regret how much I took for granted.

Thats great its helping! I couldnt tolerate it though....after a week I felt like I had the flu constantly then after a month the migraines started. I tried it twice and it was the same way everytime, but everyone tolerates it differently. Hope it helps you

Ive been on both ends.. I came down with this at 18 and my boyfriend at the time was 19...t osay at the least he was not emotionally prepared for it and just would sit there and look at me when i would cry and walk out and tell me that there was nothing wrong with me and I just "needed to calm down". It hurt pretty bad and I was afraid of going to sleep in fear I would never wake up. Now my fiance is very supportive, but I can see it takes a toll on him. However, I know he is in it for the long run, so we have made compromises. You need to comfort your husband as much as you can because he too if going through this right along with you. Trust me is it MUCH better to have someone who cares, than someone who doesnt, as I am sure you realize Hope that you get things figured out soon!

dont go off of someone elses experience... some people do amazing on mestinon and its their miracle drug. we all react so differently to everything, and it could be a great drug for you

Anti Virals can... I was on Valtrex for a couple months when I came down with Epstein barr mulitple times.

Lexapro really worked for me... that is the first med I took 4 years ago when I came down with POTS/OI and it was the most helpful one. I too had a horrible time in the beginning, but then I started to be able to drive and work again after about 2 months on it. There is no time limit needed to get a diagnosis... just a TTT. I would request one if I were you and most doctors, even if they dont believe you, will humor you and do it. Most people dont just have dysautonomia for a few months. I heard of teenagers coming down with it and it going away in their 20's, but at your age, I dont think that it would just disappear. BUT you can treat the symptoms and find out what caused it. Hope you get the answers you need soon

They can do both if you want/need it. But its hard to persuade doctors to get them to do a PICC/Port. My mom got it because she also has a lot of other health issues with her POTS.

My mom got her Port through Mayo.. she had a PICC before though. She does 1 to 2 bags a day and the nurse changes out her line once a week... but there are some serious things that can happen. Last month she had seizures she never had before then all of a sudden spiked a temp of 104.. turns out her line was infected. Its less common with Ports, but it can def. still happen. Then she ended up with a blood clot where the old line used to be and is now doing blood thinning shots for the next 20 days. It does really help her though.. but even if you take great care of it (she does) you can still end up needing it pulled, and once its pulled, they will take forever to put another back in I am currently trying to get one, but I dont plan on having it long term. There are too many risks with it to have it for years on end. The longest one for her lasted 14 months... 19 months is about an average life of one.

Congrats! It really depends on where your POTS is and what degree. If you asked me two years ago, when I was doing 90 percent better, I would say yes for me. Now, I can hardly get off the couch and anything out of the ordinary (even exciting things) make me stressed and my POTS worse. I would end up in a flair before I even left lol. But only you know your body and what you can handle

Have you tried the usual florinef and midodrine again?? I didnt like mestinon at all

Yeah I am trying to get the Port but I have to wait to get into Mayo now since I dont have POTS doctor anymore. My mom has one and LOVES it! Im sorry you had a bad experiene.. I have had plenty but at least they give me fluids before diagnosing me with the flu or anxiety and sending me on my way. I usually just try to stick it out and not go but sometimes I just get desperate LOL

I have hypoglycemia and can feel when I eat ANYTHING... doesnt matter what it is. I can take a small bite of anything and feel it for about 20 mins or so. This happens less and less throughout the day, about until 1 pm then I do a lot better until about 10 pm. Mornings I cant eat anything and usually dont until about noon. Our systems are just so sensitive.

I have the same thing.. I dont react in the evenings and it is usually becasue my blood pressure becomes more stable and my adrenaline goes down. Its normal with POTS

If you do a search about anesthesia there are a TON of discussions

Well eating would make the blood go to your stomache, which would drop your bp. The key is blood volume...when I first came down with POTS I had this constantly(and now do also) and it went away when I started Lexapro and smoking. Its all circulatory problems

I wouldnt know because AZ was in the 70's today and I think the forcast said in the next couple weeks it would be up in the 80's... I think we skipped over winter somehow.. But I LOVE those hand warmers! Also love my heating blanket... I usually wrap it around my feet.

oops just noticed you said neuro! I doubt my gp would so I have to wait it out

Yes my mom was just diagnosed this year... who wrote the prescription for her?? I dont have a cardiologist or a neuro right at the moment Thanks!

Oh yes I tried florinef twice... once about 4 years ago and then a year after that and both times I got severe migraines and felt like I had the flu. I think at this point I need to do hydration at least a couple days a week but its so hard finding a doctor to do it

Also everything regulated itself... I was freezing before and after I had a normal body temp... no cold hands or feet (just where the IV was placed), no adrenaline problems, my vision focused again and I was actually able to feel truley happy again. I was watching tv with my fiance AND paying attention wihout having to refocus my eyes the entire time. Now its just depressing because I am back at square one, but it was a nice break.

I could literally feel blood go back in my head... it was so nice! LOL after 2 years of not having it in there and all of a sudden in 45 mins feeling it is crazy. I can tell I have allergy problems (even after the IV my ears and sinues were still a bit stuff) but no dizziness or whooshing or any other crazy symptoms. I almost felt like a human being again. I dont know exactly why, but I think it raises up blood volume... maybe actually getting blood to the ears again? And thank you everyone!

Yeah I am def. going to ask about one because I dont want to keep making those trips... they said I wasnt dehydrated, but I still felt very thirsty after 2 liters. I can tell its completely out of my system because I am having a terrible POTS day right now... this flair is never ending for some reason. I thought the cooler weather would have helped.

The only one I know of is lupus that worsens when you are in the sun...?

I know I always feel bad when I go in for POTS reasons because I feel like its taking away from another patient. However, at the time I have no cardiologist or neuro until I get approved into Mayo or else I would stick it out until an appt. like I always do... I wish we could just to to an infusion center or something LOL I even tell them I dont want testing done just IV fluids, but of course that never happens.