Yolaclover

This is very interesting.

Chiari was ruled out, I'm in an awful state, lots of head and neck pain, feeling really weird when I walk around, bend over to pick stuff up, the good thing is my BP has not been making major drops at night lately.

I just want Dr. House to test me for a week and end all of these questions and stop all of this pain and discomfort and fear! Thanks friends!!!! xxooxox

But the report says I have "loss of cervical curvature" Could that be the cause of all of my problems? He never told me the report said that! Thx!

Just took my bp, like 90/50, I may need to do something, time to see cardio again!

Since this started I have had a very hard time sitting still for a long time, like on the subway or at the computer, I my head starts to feel heavy, I get pins and needles in my hands and feet and my head starts to hurt, my neck aches, I feel lightheaded, like the blood/oxygen is not getting to my head. I thought my BP was pretty good but when i went to GYN today the nurse took my pressure, I had just been weighed and was sitting down and it was 90/60, usually after I just move it is more like 110/70 (I'm on florinef) Do my symptoms sound like classic low BP stuff? Is it something celiac? I have not had gluten for about 3 weeks now. Thx!!! C

sue,, totally, it is maddening! If I could order all of my own tests I'd take a look at my spine, sitting/standing MRI, I would have done that, oh, I don't know, a year and a half ago when I started getting sick maybe? lol I would also want an MRV of my neck. Do you know what I hate? When people say I should, "just live with it". I'm not opposed to living with discomfort or pain, it's just the undiagnosed stuff that I will not allow. I say, leave no stone unturned.We have to check everything before we decide to live with it.

YES!!!! lol. I just watched the documentary "Under Our Skin" about Lyme Disease. It was totally amazing, everyone should be tested for lyme when they present symptoms like ours. The film had many, many patients who were told they were crazy or it was "all in their heads". I cried so hard watching that part. I strongly rec. this film, i saw it on netflix livestream. The good news is I felt pretty good today!! So happy. If only I could do that every day, right? xo

I totally had an U/S of my carotid artery!!! Another huge issue is whenever I sit at my computer I get very, very lightheaded. I sound like a broken record with my health complaints, even I am tired of it. I just feel like the Dr.s must be missing something, I really do. There has to be more to this.

Thank you enko, yes, totally, and as I sit here every time I turn my head I feel lightheaded! It's not right, how can this be?

Results are back and radiology says normal, my neuro will review the films.......But Normal? How can I be having all of these pressure headaches and pins and needles and be normal? Feeling like I'm going to pass out, weakness, fatigue, bad pain in head just from smiling! I'm thrilled not to have chiari, or a tumor, or whatever, but I don't feel normal. Not sure what to say to her now, i feel embarrassed, sad, disappointed and just...back to square one! A year and a half and what do I have?celiac? Could celiac be doing this? Grrr!!!! Ok, vent over!

RockiesGirl, I'm not sure! I had an MRA and my neuro seemed to imply the MRV was different even though the ins coding is the same Rockiesgirl, Iwas wondering about how you can live with that diagnosis? Is that what is causing your dysautonomia?

An MRV is a MAGNETIC RESONANCE VENOGRAPHY , I think it looks at veins, I had my studies done with and without contrast. I'm so glad to know I'm not only one hoping for "something" to show up. I mean something fixable!!! Or somewhat fixable, some explanation for me be healthy for 37 years then suddenly unhealthy.

I think i'm going to need some support when i find out. Neuro, awesome neuro, is trying to rule out a few things, one of which is a chiari. I will let you know when I know. Is it cray that part of me wants there to be something? Something operable cause that will mean all of this will be over? I know it's crazy! I read chiari stuff and the surgery seems pretty scary and not really an established thing, not a sure thing at all. I know! I haven't even been diagnosed yet and I am already freaking out! I can't help it! this is why people with a tendency to have anxiety must never get health problems! lol. My symptoms have been extremely uncomfortable, head pressure, head pain, neck pain, lightheadedness, weakness, pain when i smile or sing. However, I am still living my life, still working, still spending days at park with kids, riding the carousel, still trying to act normal even though inside I often feel so, so bad!!! I can't believe it's been a year and a half. I want my kids to have the old me back, the one that left them when they were 4 and 2, I want my husband to have the old me back, he misses me, i can tell, I miss me too. xoxoxoxo

Reminds me of my symptoms, I had an MRI/MRV Thurs. still waiting on results. Will keep you posted

What wonderful news, please keep us posted!!!

I wish I could advocate for myself better, feel like I'd be doing better if I had insisted on some things or "fired" certain doctors earlier. Keep fighting for yourself!!!! xo

Lieze, I'm so so sorry you experienced this, your husband, is he helping you? How are you taking care of all of those kids? I do not have any helpful advice but I wanted to let you know I'm here and if I think of any good ideas I will let you know. It is so hard because it is very difficult for you to find foods you can tolerate. In what part of the country do you live? I think you need Dr. Abdallah in your life The bath was a good idea, they always make me feel a bit better, hugs, C

My neuro is concerned I may have a CSF leak.

Dr. Abdallah sounds amazing!!!!! Wish I could see him too!!! Well, I have an update. I saw my neuro yesterday and she is reordering an MRI and she is also getting an MRA and an MRV. She is concerned I may have a chiari malformation. I'm nervous about having that but at least I will have some explanation of how I have felt for last year and a half. And yes! I have celiac! So this has been quite a week. I can't articulate how much your support has meant to me, I'm trying to get through this time and be calma nd strong for my kids and my husband. Inside I am very scared! xo C

Thank you all, so, so much for your replies. Do you know they mean the world to me? It felt good after working today as a pre-k teacher from 8-6pm in the 97 degree heat to come home, turn on the a/c and read these encouraging posts! I had a difficult day, my body seems to be purging all of the gluten, I do see a lot of the Celiac now that I'm reading more about it. It would be great if that was IT just celiac, omg, it would be awesome. I just know the POTS is there too, I have been confirmed for it while not taking medication by more than one doctor, I did not do the full battery of Autonomic testing, I had the TTT and my cardiologist has experience with autonomic dysfunction and is quite sure that is what I had, the TTT did not make me pass out. I am going to keep posting here and supporting others here, I think the reason my posty symptoms weren't o bad was because I was in a/c most of the day and I had taken my florinef. My nighttime issues happen to me before bed and if I get up at night. They are very scary for me! Thanks again, I mean it, I'm very depressed about all of this and this place really keeps me going. love you guys! C

I had my appointment with Dr. Pecker yesterday, he is an awesome Dr., I seriously love that man, he spent a long time with me, took a long history, asked tons of questions. In the end he does not think I have POTS. He does think i have something. He very much believes I have something, he wonders if it is the Celiac that is causing all this, so I have to go GF for 6 weeks. I was very insistent about the severity of my night issues, the lightheadedness, the head pressure, the burning feeling that goes up my head with the neck ache (that's a new one!) The gritty sound in back of my head. He said a sleep study would be good, but did not make an appt. for one. He wants me to stay on the florinef. I am so disappointed, woke up today feeling, so bad, lots of the bad things happened to me last night, at this point I don't even see why I bother, I guess I will have to drop dead for anyone to do anything to help me. That part is so frustrating. So, no testing at all. Nothing. I just have to be GF for 6 weeks, while I know this will help me, I know I have symptoms that don't seem like things a diet could help. But i will try. Thanks friends, i'm broken hearted right now. Just feel like my body is a ticking time bomb. xoxox

I just tried it too and same thing happened, why, it was 88/43 on my left side

Thanks for replying erica! Ok, the situation is that my nights are very difficult, neck pain and pins and needles in extremities, lightheadedness despite high BP , like 120/70. What is my problem? Today at work felt disgusting, until about 12 noon, then I felt a lot better but my head just has this full weird feeling. The good news is I am seeing dr. Pecker tomorrow at 3pm, I will update after I get home. Thanks friends!

I have started going GF since I found out yesterday, I check everything online before i put it in my mouth, so far so good. I live in nyc, i can walk to ,many nice grocery stores and I live 2 blocks from our local Farmer's Market, got some nice fish, tomatoes, lots of things. I can take subway to trader Joe's or whole foods, I think the transition will be easy, I will miss certain foods but we have restaurants here with GF options for sure. Right now my neuro type symptoms are really disturbing me. Last night I found when i lowered my head/pillows the pins and needles and lightheadedness and neck pain improved. That was weird because I always thought POTS =lots of pillows. When I checked my BP at that time it was very good, like 106/70. xo