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Feel So Horrible


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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.

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I totally understand. Had a bad time myself last night.

I know it is kinda strange, but I sometimes eat crushed ice and put a heating pad on my chest or alterate eating ice with drinking hot water and it seems to calm my crazy body down. I guess I shock it back into rythmn. Doesn't always work, but does most of the time. Sometimes Zofran will take away the nausea and helps calm my flopping, tachy heart down.

I know vasodilation is a problem with me, so the ice helps. I have figured out that I will have a VERY bad evening if I eat a large meal, causes bad symptoms.

Hope you feel better soon!

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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.

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I hear that. And what is up with feeling so rotten with a perfectly normal BP? It happens to me routinely, today actually.

Hopefully this episode will pass for you. I feel like I've spent half my life just waiting to have the occasional good day :angry: You bathed and dressed your kids? That's strength right there. Don't know if I could manage that. Take care.

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I felt so bad this morning got up and did some dishes and I don't even know what compelled me to try that.

I felt so bad at first I was in tears.

The more I did the better I felt.

Until I felt almost normal.

This just makes me feel crazy...the whole thing is hard to understand.

I felt so desperate this morning I thought I'm ready to just drive to Cleveland Clinic stay in a motel somewhere if I have to and not leave till they can tell me what is wrong with me or try to help me.

I just get this feeling that something is not right with my " system " at all.

It makes me feel sick and bad.

I don't know how else to describe it.

It's just an overall bad feeling I get.

Fatigue to the point it hurts.

Come to think of it I don't know that my energy level was ever normal.

I could go great guns bit most always crashed even when I was healthier.

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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.

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At my last follow-up visit with my neurologist at Vandy, I told her that I still feel so tired and that many days I'm just unable to do anything but lie in bed. Her response: that's typical with dsyautonomia and POTS and the best thing doctor's can do is to help maintain a healthy BP. Great! I've always had a normal BP-- I'm orthostatic hypertensive. So, she's basically telling me there's nothing more she can really do for me other than increase fluids, increase salt, and prescribe mestinon.

Don't get me wrong, I'm better than I was before getting diagnosed. However, I'm still very, very sick and I rarely get out of the house for socializing. My life is still significantly affected by this disorder and to know that it may never get much better is depressing. I just try to make to most of the days that I do feel good. I shop 'til I drop and meet with those friends who can on a moment notice. It's not the ideal life, but it is better than no life at all!

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((hugs)) I know, how I know. I am doing much worse lately too and it's taking it's emotional toll. And yes it is so hard to make sense of the symptoms - and many of the theories just don't hold up in real life. I'm with you - this can't be it forever! Let's hope for a good Dr's appointment on the 7th. I do hope you find some answers.

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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. :)

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I get mixed reports, my family doctor the one visit said my POTS was stabilized. I guess because I could go to a doctors appt sit up and not have a wacky bp and pulse.

Well that's me.

Everything seems to look normal but I can't do things like grocery shop without feeling like I'm gonna drop.

Then last visit she said based on my symptoms this wasn't POTS and was thinking celiac.

I went for allergy testing and have major allergies.

Some if my symptoms were reactions to food, but in eliminating those things yes I feel somewhat better but I still get potsie and until I can find more foods I can tolerate I really feel malnourished.

I had gone to a GI specialist who said this was just stress and wanted to send me away to an anorexic clinic.

What a waste of time and money!!!

By the way I am unable to find any breads right now that I do not react to. Still searching. I'm stuck with rice and rice puff cereal for my carb and it's not enough.

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This is going to be a frustrating process for you because your gut may have to heal.

But in time you may start absorbing better and feel better.

I would try to go gluten free right away if you can.

If you have a place you can buy gluten free breads and cereals I would try to make the switch ASAP.

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so sorry you're going through this, that's exactly what I feel...it's horrible and Ive gone through so many doctors with all the same answers - there is nothing else they can do for me medically since everything has been exhausted in the past 2 years...

my bp used to be 90/60 and never went higher but the past 3 months it's hovered above 150/90 and I still feel horrible...testing after testing they can't find anything else wrong and tell me to go to vanderbilt or mayo because there's nothing else anyone can do for me...even if I go to one of those I already have done everything (including pacemaker/icd) I can for my HR and BP....

one dr said he's just trying to throw water on the fire so I don't flare up as much - the one thing I've found that does help somewhat Hydrocodone; raised my bp ( I think too much) and I don't hurt as much but my body has become used to it after 3 months and the pain, numbness, spasms and tremors are worsening

hang in there and I hope you feel better

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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

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I have been gluten free since January, and while I still have POTS (and sometimes, even bad enough symptoms to go to the ER with), I can tell there is a difference in how much my pulse and bp fluctuates... Them fluctuating is the first sign I have when I'm glutened. I never really ate that much bread or pasta, so I just completely cut those from my diet. As carbs seriously inflame my joints, I usually stay under 50 grams a day... The one thing I've noticed is that I don't have as much problem of holding onto water since I've gone gluten-free. My neuro supposes that's because my body isn't trying to divert all of it to my guts in an attempt to protect itself against the gluten. Still have issues with that, especially with the summer heat here now (I'm getting frequent IV fluids right now)... Overall, I would say things weren't as bad, but I'm still pretty symptomatic. I think I may have other food allergies, or perhaps I've just done so much damage to my body it'll take a couple years for me to see the full effects of a gluten-free diet.

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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!

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I wish so badly that you all could see my son's doctor. Dr. Abdallah is the most listening, caring, compassionate, and knowledgeable doctor that I have EVER met. He has been a miracle worker with my son. Every time something changes with his condition he knows exactly what it is and how to make it better or tolerable. If you can make a trip to Northern Virginia , I strongly recommend a visit - he will work with your PCP and you thru e-mails from afar as well. He has patients that live in Spain and other countries. He is a peds. cardio but he treats adults as well. The ONLY down side is that you have to wait a while in the office sometimes because he takes his time with every patient but that is what makes him so great. I want everyone to get a good doctor and feel better. Good luck.

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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

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