Yolaclover

Cleveland clinic?

Thank you, wow, I really have it.

love you guys, thank you. So much. Lieze, i really, really relate to just wanting to go to the hospital like mayo or vandy or CC and just demanding they figure us out and fix everything! Just like a House episode or a Mystery Diagnosis episode. Today my Dr. said that my bloodwork makes him think I have Celiac Disease. When i looked up neurological manifestations of CD it said that going gluten free did not help, then again, i had no lesions on my MRI.... never had my spine checked. Now I'm a little worried about this whole thing and it makes me think about the Sue1234 post about POTS and GI stuff. the test said I had level 46- iga test, the highest normal number was 15. This was a blood test. I don't know much about this stuff.

I feel you. I was so, so healthy before this. I had great pregnancies, I could party all night any night, I could run for miles. Now I can't sit down or lay down for any period of time, everything hurts. i saw my Dr. today, first he told me I have celiac. Then he told me he thinks I do have dysautonomia and there is nothing more he can do for me. This makes me feel mad, I want him to try harder. I want a new Dr. But who? My cardio is...not very understanding. I'm seeing Dr. Pecker on Tuesday, I really hope he can help me, I am sure I can't live the way I have been living for much longer. If I have dysautonomia why do I feel horrible when my BP is good? Why am I at my worst sitting and lying down? Why don't I have pooling? Why can I go running and feel good running? Why did I not faint on my TTT? I don't get it.

Thank you lieze and songcanary xo

My cardio really wants me to go off my current SSRI (50mg zoloft) and try something else, he thinks it does not help my dysautonomia, I actually went on the zoloft for my anxiety, it really helps, but they first 4-6 weeks were horrible!!! I had to white-knuckle it through a lot of panic attack type feelings until one day I noticed I wasn't having the racing anxious thoughts any longer, I wasn't scared to go on subway and I felt good being out again. That was so nice. So, yes, currently my Doc. would like me to switch to something else, I'm not sure what as I need to find a Dr. who is can prescribe the meds (cardio is happy to talk to whomever I find). I just work so much I hardly have time to see so many doctors! I do believe that these medications can be very helpful for some of us with dysautonomia, here, this link is awesome: http://te-in.facebook.com/topic.php?uid=2230099337&topic=4334 xoxox

I love you guys and I'm so thankful for your kind words. Last night, when it got bad I took a shower, threw up, went to bed and eventually fell asleep. As I sit here typing i'm very, very lightheaded with BP of 112/73, feel very shaky, scared to take my florinef and zoloft for fear it'll get worse, but maybe it will feel better, lol! I bathed and dressed my kids, they are playing nicely in their room, my husband is asleep. He doesn't understand, he is mad at me because he wants a fun day out doing science exploration with the kids at Governor's Island but I have Dr. appt. I would give anything, anything just to be healthy for them, not even for me, they just deserve a healthy mom/wife so much. I am completely heartbroken to be this sick person.

Last night i felt so horrible, like my body was just going to shut down. It just feels like a major artery is being shut off or something, no idea how to describe it, then I check my BP and it's perfect, every single time! By perfect I mean 106/70, that's high for me, my HR is good to, 60's-70's usually. I go to my Dr. and he doesn't help me. I'm supposed to see Dr. Pecker on the 7th of June, I hope I can make it until then, just sitting here feels horrible, lying down feels horrible. Sorry for being so vague, I'm just sick of this, it's been a year and a half and I'm so done! I'm 38 and can't see living the rest of my life this way, in so much fear and so unsure of what my body will do next.

Yes, my temples too, killing me!!!!

I get some very painful headaches when I lie on my back, the pain is in the back of my head towards the bottom of my skull. Does this mean anything, they go away pretty quickly if I get up or change positions. Thanks!!!

I'm on zoloft 50mg for about a year. I'm not sure if it helps, Dr. wants me to switch to something else. It does help my anxiety, that's for sure, but maybe it makes my POTS worse? My problem is the very low BP.

Thank you so much Christina, I guess I just haven't fully accepted my situation yet! It is so hard to get used to this because dysautonomia changes all of the time, one day you feel okay, one minute like you're about to die, you know? I already had bad anxiety before I got this so it just wasn't really something I was emotionally prepared for, I guess no one really is Seriously, thank you. I'm so thankful for the kind and intelligent people here. I am very fearful and sometimes that fear does get the best of me! 718

Ryan! You sound just like me! I had an MRI of the brain, would that show a mass around my pituitary gland? I saw an endo, she put me on a diet, lol.

Naomi, yes! I did start florinef again about two weeks ago, this issue, of supine lower BP has been my main problem since my POTS started. I wake up, go to the bathroom, lie down and a few minutes later feel like I have no blood in my head. The same thing happens when I sit for a long time. I hate it!!! I get so scared I'm going to die in my sleep. I just read about so many potsy people who need to sit/lay down and for me it always seems like I feel better walking around, the more I move, the better I feel and this makes me SO scared that I'm walking around, misdiagnosed, about to drop dead! When I go to bed, I'm exhausted. I'm so tired!!! Working full time, two toddlers, today I walked into work at 8am and just cried to my colleague. I'm terrified. I work so much and have so much to do I barely have time to see Drs. The worse I feel, the more I step back from my life, don't return calls, avoid social situations, because I'm scared people will think I'm crazy I used to be such a happy, social person, it kills me.

Yes, it is not normal how I am worse when I am sitting or lying down, everyone else is fine when they sit or lie down, it makes me very scared something else is going on and terrified to go to sleep at night.

Hijack away todd this is fascinating!

just lightheaded, not dizzy at all, no spinning

lol!!!!

I noticed there were a lot of causes for POTS, did your Dr. check you for all of those things?

Is that normal for POTS? Could it be something else? Do I ask this question too much? lol! I have such bad brain fog don't even know what I'm repeating

Ilya V Kaplan, MD 5 STATION SQ FOREST HILLS, NY11375 Phone: (718) 544-4720 He also works at Montefiore Medical Center in the Bronx Dr. Kaplan is a cardiologist with Dysautonomia experience and PAF. Shy Drager experience. I like him very much, he returns calls and emails quickly. His office staff is super nice.

It is so weird to me how I quit my job, my salary (double what i make now!), my benefits, my tenure... Now there is a hiring freeze in city of New York AND I am sick Feel like I have the worst luck in the whole world. Had to quit my job though, it was so stressful and the atmosphere was so toxic.

lieze it is ridiculous!!! Okay, so, some nights this does not happen to me. Does that mean it is most likely just a blood pressure related thing and not something more....horrid?

Cardio got 80/50 last time I was there without meds. This was sitting. Before that I was 120/70 sitting and 90/60 standing (taken by GP). these numbers lead me to believe m,y home monitor is defective, Dr's numbers are always lower than mine!

Thank you so much for replying, sometimes my symptoms really get wack and it upsets me, I do not understand them and they feel like I'm going to die! Why do I feel worse when I lie down? It seems like all of the POTS people need to lie down to feel better. I do not get that! xoxox