Yolaclover

Before pots I'd come home from work and enjoy a nice glass of wine. Since POTs started I feel really bad the day after, not worth it, I miss it but all alcohol makes me feel rotten now.

Hi Ollie! Welcome!!! I know how it feels to be so frustrated! This is an awesome community and you will learn so much here and I'm sure we will learn a lot from you! xo

1. florinef 2. midodrine 3. Drs whoa re understanding and listen 4. Fighting for myself, even though I don't want to and wish someone else could do it for me 5. slowing down, listening to my body and of course, this group!

I am going from 50mg zoloft, I was on 25 mg for a couple of weeks and this week started 12.5. I have been on zoloft for about a year, I am stopping because cardio thinks it is not helping me and wanted me to stop. I feel really bad and am never quite sure if it is my pots or the withdrawal, lol. One more thing to love about life! I wonder if I ought to consider a new sari or snri to help with my Pots? I will ask my cardio on thurs. Any advice is appreciated more than you know.

I am weaning off of zoloft.

NY is awesome, I'm sitting here eating saffron pistachio ice cream for dinner!

Naomi, I saw a Dr. named Bernard Feigenbaum, he is with Murray Hill Medical Group in NYC, he is affiliated with NYU hospital. He and his nurse did a thorough history, talked to me a lot and I have a bunch of tests I'm going to do tomorrow at NYU, tryptase, 24 urine, all the stuff people talk about here with MCAD, he also threw in a new celiac test, lol! I really liked him and I do rec. him if you need to rule MCAD in or out.

I understand, I would be the same way, I'd be so scared, because you don't want to feel worse than you already feel!!!! It's their house so it is totally difficult to tell them how to live, since they are the ones helping you and your kids. Sometimes I wish I could just run away, it is so draining trying so hard to live up to everyone else's expectations when you are so much pain, fear of being in still more pain, not for days or weeks, but years! xoxoxox It has to get better!

What was your experience?

hi Meg, Welcome! Holy POTS, those are some crazy symptoms you have! Have you been to some great POTS specialist yet? Are you on any type of medications? I can relate to how you feel about your husband, I think mine is actually depressed about how I am, he is just too nice to say so. I have two kids, 3 and 5yo, they are great, I am able to move about and do things without heart rate spikes and stuff. I just suffer from constant crappy symptoms, as I'm sure you've read about So, a nurse? It's amazing how many nurses and nursing students have dysautonomia!!! I hope you join the dysautonomia connection website on facebook and meet Emily Cardwell, she was a nurse, in the nicu I believe, after she passed out at work she has been trying to become a nursing professor. she knows a lot about POTS and she has similar symptoms to you. In this group there are nurses too. How do you manage to be a mom and a full time student with these symptoms? Well, just wanted to say Hi and welcome and look forward to you posting!

I wish you could see the dr I saw yesterday, he was an mcad, food allergy specialist. I think you do need your own food preparation stuff. Xo feel better, be calm, carry on.

Darlene, I actually went to a MCAD specialist yesterday and told him i wanted to rule out MCAD and i'm going in to do my tests tomorrow. Just be proactive and never give up!!!! We are worth it, there are moments where I know he and his nurse were like, "if your doctor didn't suspect MCAD why are you here?" but I was persistent that it was important to be tested to rule it out as a cause of my blood pressure drops.

lotus flower, what a good point! Yes, it did take some time to build up, maybe like 5 weeks? I don't remember but it was not instant. It's strange, i am noticing more and more neuro type of symptoms, back then I just was potsy, head pain, blood pressure low at night, light headed here and there. Now I'm just...a mess. lol, I am at my very worst when I'm sitting or lying down, it is so unfair! All I want to do is have a nice relaxing sleep, or sit and watch a good trashy TV show, both of these things elude me.

Naomi, Sue Thank you! Yes, neuro is trying to get the neck MRI approved, for some reason this is proving harder. I have read about that Levaquin too!!! I did not take the whole course but i did take some and I remember it was not good, not good at all, it was after I got POTS so I'm sure that didn't help! oh lord, what a mess! I see a therapist and he says he believes me how bad I feel but he is sure the tests will show nothing and all of this is just a manifestation of my pent up feelings from a horrible childhood. Yesterday I told him in no uncertain terms that, no, maybe a headache, maybe a little sleeplessness or teeth grinding, but not this, this is off the charts. This is my Hiroshima. This is me going to bed terrified that I won't wake up in the morning. I have been pushing myself very hard to be normal despite feeling like I'm about to go meet Elisabeth Edwards. I ran 3 miles, I went to the Korean Spa, I clean my kitchen. I'm scared I'm hurting myself more than helping. Not sure! Thanks friends, your support means everything for real. xxoxoox

So, it has been a very difficult week, and my birthday was on Sunday! Everyone wants to take me out to dinner and I love going out, but i have felt so, so bad and to top it off, i'm not getting much sleep because my head, neck and back are killing me. I haven't been out to dinner at all So my lovely and awesome neuro prescribed topamax and I started and the night I started I had a new weird symptom. I felt paralyzed in my sleep, but I wasn't paralyzed because I could move my hands, feet and everything else, it was this strange momentary feeling. And now, lucky me, it is happening a lot!!!! I did not take the Topamax last night and I still had it happen to me many times. I wake up feeling very bad, nausea, massive pins and needles, especially in hands, feet and the latest pins and needles place is in my privates area!!! So, I'm having a lumbar spine MRI tomorrow. also! I saw an MCAD specialist yesterday, I'm going to do some other testing for him on the day I do my spine MRI (tomorrow at NYU hospital). I'm doing my due diligence, if my POTS is being caused by something I will find out what it is. Any insight into all of this POTS weirdness would be deeply appreciated.

I have had migraines since I started having POTS. I had not had migraines before, so this has been an issue for me for a year and a half. Sometimes I have had no migraines, lately they are very bad.

It sounds like he is testing you for all of things you want to be tested for.

Same as Naomi

1. Head and neck pain, all day and all night 2. Lightheadedness 3. Nausea/vomiting 4.jelly legs/heavy legs 5. Pins and needles hands, feet, face, head

Right before this started there was a "perfect storm" of bad thing: Ear infection, japanese hair straightening, levaquin, I had a tetanus shot, Hep. A positive, quit my job, this all happened in the four weeks leading up to that day at work when I got so lightheaded. I did have mono when I was 19, it hit me hard but I did get better and never worried that I had effects from it. I tested neg. for Lymes recently but sometimes I wonder..... I also tested positive for gluten intolerance recently. 45 on the IGA. Not sure how it all adds up, if it does at all

I had some blood tests after this started and found I had Hepatitis A!!!

People do not understand. It is so frustrating. We are told, even by our own doctors that it is "an inconvenience" a "nuisance", so we do our best to try to live our lives normally while our bodies are doing things that are absolutely terrifying. My aunt is a clinical nurse practitioner and she does not get it, she loves me so much, but she is certain that I will get better and what I have is not such a big deal. I was downtown here in nyc on 9/11, it was very traumatic and I had night terrors for more than a year after, I'd wake up screaming in the middle of the night and have no recollection the next day. It took me a long time to feel safe again, I was finally starting to really feel strong and enjoy my life...and then this happened. Like a cruel joke.

Thanks friends, your comments mean so much to me. I really do feel so alone in this, when I read about the struggles of others it kills me because I know how frustrating this can be, the lack of answers, the countless drs. I am sad to say I had a really, really bad night last night. I went to put my kids to bed, I always lie down with them. When they fell asleep I got up. I think I slept a bit too. I got up and felt horrible, strong nausea, felt very unsteady on my feet, the normal lightheadedness. I went to my room to lie in my bed, overwhelmed by nausea, I threw up. I took my blood pressure, it was at times, as high as 120/80 and at times as low as 90/50. It took a very long time for me to fall asleep, I was terrified I was going to die in my sleep. I had pins and needles feeling in my groin area, in my shin area. I woke up, felt the same, drank some water and had a salt tablet, took my BP until it seemed stable and somewhat normal, then fell asleep again. I woke up feeling bad. I saw my Dr. I told him everything. My BP was 90/70, my pulse was normal. He was unconcerned. I was disappointed but not at all surprised. I am feeling very bad as I write. What am I doing wrong? I want so badly to feel better! I'd do anything, anything at all. I've been doing great with the gluten free, I am taking my .1 mg florinef every day. When I feel good I run 2 miles- no problem. I worked 46 hours per week all year! I am on vacation now! I take care of my two kids and keep our apt. pretty clean and neat. One thing i know that helps is reading all of the posts here and learning all i can about dysautonomia. I love the people here and I'm so glad to be part of this community.

I just am so frustrated with this whole thing, all I know, with absolute certainty is that one day I was sitting at work and when I looked up I felt lightheaded, like I was going to pass out, it happened again and again and every day since that day has been completely scary, miserable and horrible. Before that day I was completely healthy. It took me about 6 months to get diagnosed with dysautonomia, my Dr. did a poor man's tilt, I had a regular TTT and did not pass out, other Dr.s have checked me in their offices and saw my heart rate go up from 90 to 120. For a long time I took midodrine, 10mg, 3x per day and my BP never went higher than 90/60. When florinef was added my BP started going higher and I went off midodrine. I was ok like this until one day my cardiologist told me to start lowering my florinef, and eventually I was taken off it completely. I was fine for four days, for many days leading up to this I felt great too, i felt like me again. Then the whole thing started over. I'm on .1mg of florinef per day but I am not feeling like I used to, before all of this started. I struggle with neck pain, headaches, head pressure, lightheadedness, OI, nausea. I never want to go anywhere or do anything because I do not know how I will feel, often my symptoms are very distracting and I can't focus on anything, they demand my attention. I have never passed out. When i lie down my head and neck often hurt. When I sit down my head and neck often hurt. tylenol and ibuprofen do nothing for this pain. I hate my life. I adore my husband, kids, friends but I hate feeling this way. I don't even feel like I can talk about it to anyone because I sound like an idiot with these vague symptoms and that look.... that, "why aren't you better yet?" look. My 3yo speaks matter of factly about me being sick. I was supposed to be better now. I thought she'd never know about this. I can't relax and enjoy anything. ok. vent over. thank you. xo

She really explains why it hurts so much to lie down and be supine, also...how we present with chiari-like symptoms. My neuro really thought my symptoms sounded like chiari.