Hello!

[Yolaclover]

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

[abnel]

Hi Clover, lovely to hear from you. I can really relate to a lot of what you are saying. When I was at my worst being supine also made me feel worse and I used to dread going to sleep at night because of the dizziness/giddiness on lying down and the increased tachycardia. I used to feel much better standing and walking around and exercise made me feel almost normal, but once I stopped the symptoms would all come back. Now my POTS has changed and I am definitely worse standing up and sometimes feel worse on exercising. But on the positive side I feel better on sitting and lying down which is a relief because I have a sedentery job. Good luck with your appointment on 10th May and hopefully they'll give you some good advice and direction.

[Yolaclover]

[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

[abnel]

I know exactly how you feel. I am still grieving for the person I once was (I was only diagnosed last August but was symptomatic for a year beforehand). I, like you, also had heaps of energy, was able to do 3-4 hours of heavy gardening a day, went out with my friends at night after work and on weekends, drove all over the place, travelled overseas a lot, etc. I have also had to withdraw quite a lot from the social side of life, all the travel that I love, etc, which has been so hard, especially missing out on special events and family occasions. Like you, the thought also crossed my mind that when I was at my very worst, if it hadn't have been for my husband I might have had to go to a nursing home. But having read other posts on this site I know there are others who have suffered far greater trials than I have, yet somehow have managed to dig deep within themselves to find the strength to keep going, no matter how hard things got. I aspire to be like them, they are my 'role models' and I take courage from their strength of character and resilience.

[issie]

Ditto, I think all of us mourn that we can't have the life that we want. But, try to be positive and appreciate what there is that is good in your life. Don't mourn the "if onlys", but be happy for the "things that are". One tip that helps me, I have to sleep propped up on pillows. I can NOT lie flat down. It will make me get allot worse. I have about 3 pillows under me at night. I think that when I go to sleep my bp drops too much and also my autonomic system doesn't tell me to breathe. Being a little more upright helps that. Also, have you been checked for sleep apenea. I have that too and have to use a CPAP for that. There are several types of apenea and some people have them both. Hope that you find some comfort in knowing that you are not alone in this - welcome to the group. There's allot of really nice, knowledgeable people here - we're all searching for answers. It's nice to be able to share your thoughts and feelings and to have some that research possibilities that possible doctors haven't thought of. We tend to research allot, we have personal interest - in finding those answers = POTS.

[Yolaclover]

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!

[songcanary]

I think we manage better. Almost one year to this day, I referred myself to the Cleveland Clinic. I had lost so much weight it was dangerous and I felt like I was watching myself die. I figured they could at least pass me around until somebody figured out what was wrong. And that is exactly what happened.

In the year since, I have resumed working a little, and I have gained back my weight. I am so much improved that I sometimes forget how bad it was. That's a big deal because I never thought that would be remotely possible. So there is hope for you. My hubby was clueless until I started dragging him to doctor visits (I finally got too weak to drive). Now he gets it. Men don't like complicated problems they can't fix. Welcome to the forum

[Sarah4444]

Hi there, and welcome. It's my impression that many people do actually get better, while some others don't - I think most of us are in between, getting better to some degree and learning to manage and adapt to our symptoms. From what I have read, the sooner POTS is diagnosed the better in terms of prognosis. In my case I think I have had POTS at least since mid to late adolescence (I'm now 41 and was diagnosed last year). By last summer I was completely bedridden/crawling to the bathroom and back. I am definitely better than that now, but still nowhere near normal. I think the best we can hope for for now is to get well enough to exercise (and some really unlucky folks can't even get there, no matter how hard they try or how desperately they want to), either with fluid loading/salt and if necessary with medications and then see how well we can do if we can gradually regain muscle tone and stamina.

I have gone from bedridden with chronic anaphylaxis, to now being able to manage 20 min a day of light swimming and walking. I still can't stand still for long (or even sit still for long some times) and my symptoms are still exacerbated by eating, stress, exercising too vigorously, etc. but at least I am better than I was. I still spend most of my time reclining, sitting on my couch with my legs pulled up, and lying down. My problem now is that it's so variable - one day I'm back to barely being able to get out of bed (and terrified this will last), and the next day I can manage a short dinner out with my family.

[HopeSprings]

Hi there and welcome. I had no idea NYU had a dysautonomia center??? I am in Northern NJ and have tried like crazy to find a Dr. in this area who knows about POTS. I want a Dr. who can go beyond -- water, salt, florinef, midodrine. I want real expertise like the Doctors at Vanderbilt. Please, please let me know how your experience goes at NYU.

Just a few questions - you said Florinef turned you around. Why aren't you still taking it? Also, you said it took a few weeks before you felt any benefit? Were there any side effects? I tried it a few times and each time had weird breathing episodes at night, so have been afraid to try again. Maybe it wasn't related - I don't know. I am thinking of trying it again.

You said, "when I napped I would wake up feeling very "sick and brain-foggish" This really struck me because I haven't heard this one mentioned too often. This has always been a problem for me - long before all the crazy POTS symptoms. I think it's related. It's a really nasty feeling waking up from a nap -- I get this very chemical taste in my mouth, heart POUNDING, completely out there/almost delirious feeling. Takes an hour or two to snap out of it.

Well I hope you enjoy this site. We can learn so much from eachother here. Oh and I echo your thoughts about Doctors... they tend to dismiss anything we come up with "online" and don't seem to know about most of the things discussed here. It's frustrating.

[Yolaclover]

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

[Sarah4444]

C-

I was in a car accident in 1987 and sustained a spinal injury. Many of my odd health problems since then were blamed on chronic pain, even by me, and the rest I just ignored as best I could. I also got mono a few months after the car accident and I think it kicked my illness up a notch or two, but again this got all mixed up with the injuries from the accident. A couple of years ago I realized that something else/bad was going on along with the pain (and mixed up with it too). It has been an utterly exhausting journey and incredibly stressful at times, but having an idea what is going on really helps psychologically at least.

With regard to flying, I would strongly recommend compression stockings. I have tried them to help with POTS and I don't find them very helpful, but when I have flown over the last couple of years (before I knew this was POTS) I have used the drugstore variety and found them helpful. I would hope the prescription/full leg ones would help even more. And stay hydrated.