Yolaclover

I drink water with it but not a ton

I take my BP once at night and once in the day time when I wake up and I'm still in bed, the reading used to be very low in bed before I got out, but now, 1 yr since I was diagnosed, they have improved greatly, which is awesome! I find my lowest numbers occur btwn 2-5am. I do feel fluctuation during the day and I will usually have a low diastolic reading when that happens, but they don't bother me the way those super low spells do when I'm in bed. I do not have a lot of the sxs I had when this first started. I had intense head pressure, I had horrible "hanger pain", I had blurry vision when the pain and pressure was bad, I had nausea, vomiting, diarrhea, my face was colorless. when m,y pressure was mega low I'd feel like my throat was closing and my hands would be all pins and needles, my tongue too. I had a hard time writing and sitting for periods longer than 10min. most of these sxs are gone or rare for me now. I am improving and trying to stay as healthy as I can because I work full time and I have two kids, I will visit the NYU dysautonomia lab in May and I hope to update my diagnosis and see what is the status of my POTS. I think a low dose of florinef would do wonders! Thanks so much for replying, it means a lot to me. C

At night my sxs kick in when I get up out of bed, it could be to go to the bathroom or one of my two toddlers needs me, I lie back down and after about 3-5 min I get very lightheaded. Particularly on my left side. I get a lot of pins and needles and visual disturbances. Some nights I am able to get through with hardly any sxs , on florinef I did very well at night. Maybe I should use a nicotine patch at night!

When it was low like that didn't function, I was terrified I would be put in a nursing home! Fortunately I saw a cardiologist who realized that was too low and he put me on midodrine and then florinef. I had 6 months with the 70/40 and lower pressures. It was hellacious.

My pressure gets lower when I am sitting and lying down too! I was on midodrine, 10mg 3x per day and then cardio added .2 florinef once a day, for months I was 90/60 with both of these medications until one day I got very high bp and had to go off midodrine. Then I stayed on florinef and felt very good.

I have been lower than that, way lower, but I was taken off florinef because my pressures were good when I titrated off my florinef, I was averaging 110/65 then. Now that I am a few weeks off florinef my pressures are getting lower, at my worst I was 70/40 or lower! I think my pressure gets low and I sort of panic (you know when yr pressure is so low and how horrible that feels) and it shoots up to 90/50 by the time I get my monitor on. But so far my dr. Is satisfied with my blood pressures and would rather not put me back on florinef.

Ok, I sleep on a lot of pillows and I take a 1mg salt pill before bed, but now that I'm off florinef my worst demon has returned, the dreaded low BP at night. I felt horrible last night at 90/52. What can I do to make sleep time a bit more bearable until I go to the Dr. on May 10th? Thanks!!!!!

Did you pee yet?

I take a nighttime salt tablet before bed and it seems to help me!

I fantasize about a real life Dr. House and his team diagnosing and curing me

Hi sc, sarah, naomi! Wow sc, it sounds like you have come a long way, cleveland clinic sounds like they have a really solid dysautonomia facility, I have heard so much about it, i lived in Cleveland in 1997 so I have a certain affection for that area and their excellent medical facilites (that I didn't need back then! ) Sarah, wow, you really suffered such a long time, we both found out our diagnosis about a year ago. It sounds like you are progressing and that's great! How did you handle all of those years not knowing what was going on and where did you get your diagnosis? Naomi, yup, nyu, wow, I hope it's a good experience! We always hear about Blair Grubb, Mayo, Vandy, CC, but NYU? Nada! I'm excited to go but I'm worried I'll come up with nothing again! Florinef did help me, at first it seemed to do nothing, maybe increase my headaches? But then after a few weeks I saw a real difference, I gained weight, from 122 lbs to 145!!! I felt better though so i tried not to let the weight gain bother me, honestly, I'd rather be overweight than lightheaded all day! I can't remember when i could take a nap without waking up feeling "sick" I have a feeling it may have been before I got mono when I was 19 yrs old. Just a guess. It took me an hour or two to snap out of it too, when I was pregnant this did not happen, I'd wake up refreshed. My current cardiologist tried midodrine, salt, florinef with me. He says everyone he treated with POTS got better, well, yeah, if he just told them they were better and never spoke to them again I'm sure they were way better! That is why I'm off florinef now, because my BP was good one day at 120/70 and the Dr. said I was all better. He told me to stop. I was so excited to be better I stopped (I had been titrating down to 1/2 a .1mg every other day). Personally, I think i'd thrive on a low dose of florinef every day. So, I am supposed to go to Eastern Europe in August. What will that be like? Will I have a POTS attack on the plane? I'm already worried, yes, I'm a worrier, lol. thanks for replying. C

This frequent urination has been a big issue for me for years, particularly at night. The florinef helped but now that I'm off florinef it is acting up again.

Hi growltiger, I think it sounds like POTS too and I hope you will have a diagnosis soon so you can start trying to find a way to effectively mangage your symptoms. I will never forget how good it felt to have a diagnosis!!! Everyone telling me it's panic, anxiety, it was so hard doubting myself and being so confused and feeling somewhat bullied by all of the professionals I was seeing. Where do you live? I'm in ny and I'm going to the NYU dysautonomia center. I have no idea what to expect, I have never seen anyone post about it on these dysautonomia forums. I'm excited to let people know how it was. It is a rough road with dysautonomia, no matter how great the specialist we are all different and finding the right mix of treatments is challenging, what works one year may not work the next, it's not like other illnesses that people have heard of and that can be frustrating. You are on your way though!!! Please keep us posted on how you are doing, I'm like you, not the best advocate for myself, i have found myself crying in front of my regular dr. I just took the info from the dysautonomia center to my doctor and he wrote the referal, it was easy and trust me, he's not a warm, fuzzy guy, he's Russian and is "always right". lol! Good luck!

Issie, LF, Thanks so much for replying! I'm blown away by the knowledge and information I have found by fellow POTS sufferers. I only wish that my doctors knew as much as the people i meet online! I always hear about all of these tests and medications here that my dr.s seem to know nothing about. I hope I'll get some good ideas from the nyu center but I'm keeping my expectations low. I have friends with more well-known illnesses and they have whole teams working hard to keep them feeling better, I tell people what I have and their eyes glaze over like I have nothing, "oh you feel dizzy? Me too" It's frustrating for sure, we wind up saying nothing about it and silently suffer because there's no pint in sharing what we are going through. My husband minimizes my situation quite a bit, I know he means well but it doesn't help. I need his support sometimes. Sometimes I would talk to my cardio about things I see online and he'd dismiss what I said, as if everything was misinformation. Well, I know that there is some misinformation but I also know that most of what i have learned is from people with dysautonomia, something he has never had and I know he's had some experience with this but he could always learn more. Today there is a lot of noisy (3 power tools at once) construction on a school just feet from my apt. and on top of that the elevator is broken for the day and we are on the 6th floor!!!! Could a potsie have a worse situation? lol! Issie, I too cannot lie flat on my back, it feels horrible! I use a lot of pillows, my husband makes fun of me but it really helps. It has been a year since my diagnosis and I feel less anxiety now with the POTS. I do feel sorry for myself sometimes, but way less than I use to I do think back to things I did before I got POTS and wonder if I somehow did this to myself. I don't want to feel bad about this anymore, i want to learn to live with this, I think that my cardiologist telling me I would "definitely" get better sort of ruined me. Do people really get better or do they manage their symptoms better? thx!

[Lotusflower, Hi Oh my, if my POTS were to change up it would be so hard to adjust! I'm just getting used to being like this! I still can't believe I have this, I remember so clearly the person I was, I could have a glass of wine at night, go out and have fun, effortlessly care for my kids, now I have to think about everything, I pull away from people because I never know what sort of day POTS will give me! Thanks for replying! C

Hi friends, my name is Clover and i'm a 38yo mom of two, a 3yo and 5yo. I live in Queens, NY. I was diagnosed with POTS a year ago by my cardiologist after many months of my Dr.s saying it was "just anxiety" "do yoga" "take a xanax, lexapro, zoloft etc..." A couple of weeks ago I saw my cardiologist, he had suggested I lower my florinef so I was on about 1/2 a .1mg every other day. On this day I had been on the lower dose of florinef for about a month, he checked my BP and it was high (for me) like 120/70 and he said to stop the florinef and he's see me when I'm 65! Wow, I thought the nightmare was over and I was better!!! A few days later I started getting all potsy again and now I'm just potsy....not as bad as I was a year ago.....but not as good as when i was on florinef. My regular internist helped refer me to the NYU dysautonomia Center and I'll go there on May 10th to get some idea about where I go from here. The onset of my POTS was strange. I was 37, had quit my job of 7 years and had started a new job. My new job required a lot of sitting, I was hunched over a lot too. When I lifted my head one day, BAm!!!! I felt like I was going to pass out. It scared me but I shrugged it off and kept working, it kept happening. I got panicky! I thought i had a brain tumor or something. I went to the Dr and he did an ekg. Nothing. It happened again at work and I just quit the job. I started getting the headaches, visual problems, constant lightheadedness and super low BP. No one believed me that something was really wrong, except my mom, a nurse. During the time I was at my worst I feared I'd wind up in a nursing home, away from my family. Finally I was referred to Dr. Kaplan the cardiologist and he said POTS. He put me on 5mg midodrine, then 10. That helped but 6 months later I was still having a lot of headaches and my BP was still only 90/60! He put me on florinef and after a few weeks I really felt a difference, like the old me. Headaches almost completely gone, energy, everything! I have had a TTT to confirm my autonomic dysfunction but sometimes I wonder if I just have nmh. I don't know. I always wonder why this happened to me, I did get a bad virus before I got it, Hepatitis (the good one). Maybe that did it? My very worst time is at night, i often wake feeling very lightheaded or as though i just passed out. The more supine I am, sitting, lying down, the worse I get. Of course I have good days and bad days but I really miss feeling as good as I did when I was on the florinef. I do not exercise but my job is pretty physical. Sometimes it really stresses me out and I wish I could quit But that's not an option, besides, it feels good to contribute. Up until that day in 2010 I had really, really great health, excellent pregnancies. The only weird thing I can think of is that when I napped I would wake up feeling very "sick and brain-foggish" Because of this I rarely napped, when I was pg napping was fine with no problems. I have always had low blood pressure but I never had an issues with it at all. Well I have read many posts here and I feel like I know everyone already but I am really glad to finally be able to post and say Hi Clover