Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
lieze

Doesn'T Sound Like Pots

Recommended Posts

Well I had my follow up on my ER visit and have a new diagnosis of hypoglycemia I guess.

She doesn't think my symptoms sound like POTS and wants to send me to a G I specialist.

She's thinking Celiac which I tested negative for at CC but she thinks the fact that I am having trouble with meat now maybe a sign that it has progressed enough that it may show up at this point.

I am just a nervous wreck and scared and so afraid of tests.

Share this post


Link to post
Share on other sites

I think of it this way we should be eating 6x a day: grazing I liken it to. That should help hypoglycemia. As for GI most of us have some sort of intestinal issues. So that's part of the. Syndrome. We have. Not all doctors and diagnosis's are all there same say same appointment time.

Now eat something. I still have cookie dough I mixed for Christmas I might bake a few cookies later. Take care M

Share this post


Link to post
Share on other sites

((((Miriam))))

Thanks.

I guess I need to work on the blood sugar issue and stomach issue.

After I eat I feel like I'll have a heart attack,

Maybe it's something they can fix.

One day at a time.

Yes eating I've had an ensure a boost a yogurt and am now working on a little bit of chicken, applesauce, and Pepsi.

Feeling a bit more energy taking in more calories.

But I fatigue very easily.

Share this post


Link to post
Share on other sites

((((Miriam))))

Thanks.

I guess I need to work on the blood sugar issue and stomach issue.

After I eat I feel like I'll have a heart attack,

Maybe it's something they can fix.

One day at a time.

Yes eating I've had an ensure a boost a yogurt and am now working on a little bit of chicken, applesauce, and Pepsi.

Feeling a bit more energy taking in more calories.

But I fatigue very easily.

I have had trouble with hypoglycemia before and the only thing that helps is removing all sugar/grains from my diet. Soda is a huge no no and you have to even look at things like yogurt. There can be a lot of hidden sugars depending on what brand and what type you buy. I focus on protein and fats and vegetables. Foods that keep your insulin levels stable all day. I will have a few starchy carbs like corn or sweet potatoes, but that is about all. My blood sugar issues are almost one hundred percent gone now!

Share this post


Link to post
Share on other sites

Lieze aren't you relieved you have a doctor who wants to get to the bottom of what's wrong with you? Look back at the posts others have written here- people who, even with a secure diagnosis of POTS, have had nightmare experiences in the ER with Doctors who have never heard of POTS. Do you know how lucky you are to have been treated so well, and have a Doctor who even knew what the initials of POTS stand for? Many folks here would give their right arm for a Doctor like the one you saw.

As for it being coeliac/GI: WOW! If I could turn back the clock, and be diagnosed with something as fixable as coeliacs or another GI issue, instead of POTS- which, let's not forget, is treatable but not curable, I would be over the moon! Your biggest worry at the moment does seem to be the problem you have with eating, so I guess it would kind of fit that it's GI related.

You say you're a 'nervous wreck' and scared of tests. What is it you're scared of? What is it that you want to happen? Do you want to be told that you don't have POTS, or that you do? Coeliac I know can make people feel lousy- my brother has it. But I also know that anxiety can heighten sensations all over the body, and you seem anxious in very many of your posts.

I hope you can get the answers you're looking for and feel better soon.

Share this post


Link to post
Share on other sites

I am scared I am going to die because they can't find what's wrong with me.

I am so weak that I don't even know how well I'll hold up for tests and fear I'll have a bad episode on the table.

I go to great lengths to try to avoid episodes in the hope of prolonging my life.

avoiding those things that set me off.

I don't want to have a bunch of unnecessary tests both from a $$$ aspect and what it will put my body through.

I am traumatized over what I have been through these past 2 years with my health.

There are most likely people sicker than me, dealing with much more. I don't know how you do it.

I am frazzled.

I had four children that now I don't know that I can take care of or even be here for even in a disabled role.

I feel as if my life is devastated.

My kids were my life and I am letting them down.

Share this post


Link to post
Share on other sites

I know how you feel about not being able to eat. I had a parodoxal reaction to an SSRI and it made me feel so incredibly anxious and terrified that I couldn't do anything much less eat. The only time I could eat was at night after I took Restoril for anxiety (it's a sleeping pill). It sounds like anxiety is making your condition/symptoms worse. While the doctors are trying to figure out what is going on with you can you take something for the anxiety and see if it helps a bit?

Good Luck to you!

Janie

Share this post


Link to post
Share on other sites

Xanax was working well for me but the last couple tomes I took it I could feel it hit my system and I had a freak out.

Either a panic attack or my body genuinely went into some type of crisis mode.

I felt nothing aty carotid and then my heart rate went up to 150.

I felt staggery and out of it as I had the sensation that my heart stopped.

I reported this to my doctor yesterday and she just said those types of meds have to be taken with food.

I also had a very exaggerated reaction with Benadryl.

My lips went numb.

My lower body felt numb.

It felt like my legs were shaking but when I touched them they were not.

I had the sensation that my bladder was letting lose.

I felt out of it and sedated and it was very scary.

This happened after a small spoon of children's benadryl.

My doctor just shook her head and commented that I'm not even able to tolerate pediatric doses.

So I am fearful of medications.

Share this post


Link to post
Share on other sites

Lieze,

Although I haven't been on here for a while, I wanted to skim a few postings, and yours caught my eye.

I know this horrible feeling of anxiety, and feel my body react to everything----even a loud TV--(which isn't really loud, but seems like it to me).

This can make everything feel worse. The doctor owes it to you to help find out why you're so anxious. This is a symptom of an overactive sympathetic nervous system. A malfunction of your ANS. (autonomic nervous system). All kinds of things can cause this--------------even Celiac disease.

http://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

Advocate for yourself, or find someone who can--------- you deserve better answers----------DEMAND THEM!

The anxiety is the worst, and I have sincere compassion for anyone going through this. Anyone that doesn't, deserves to deal with this themselves to teach them a lesson in empathy.

Sending you a BIG HUG!

Maxine :0)

Share this post


Link to post
Share on other sites

I personally dont think being tested for celiac is worth it. They don't give you any medication for treatment, they just tell you to avoid gluten. I would avoid gluten for a month and then try to eat something with gluten after that month. You should be able to tell if you have a problem with it. I can tell if I've had a trace amount of gluten. It starts with a headache for me and then I start bloating and feel like I have just eaten razor blades or needles. I'm not a medical professional, but as I've said there is nothing you can take for celiac or gluten intolerance. All you can do is avoid gluten. I have to say it can be hard at first. A good idea is to join one or all of the celiac websites and get information and advice. That being said I have been gluten free for 3 years and I still have POTs. I do feel better without wheat and I don't have as many digestive problems, but I do have bowel motility problems. Is all of this related to POTs? I wish someone had the answers.

Im not sure what else they want to test you for, but its worth finding out whats wrong. Even if the tests aren't fun. Honestly the worst test I've had was when I had liver problems and they took so much blood to test for hepatitis and who knows what else that I did feel bad. All of the tests I had for POTs weren't bad at all. I went through them and came out thinking I don't have this. All of the horror stories I read here about the tilt test didn't happen for me. At the time everyone on dinet was saying that when they started having problems that they could sit down or lie down and feel better. Most of my symptoms happened when I would lie down, so my thinking was that my neurologist was completely wrong when he told me he thought I had POTs. After being diagnosed I found that my body was releasing huge amounts of norepineprine and epinephrine and my symptoms were just as bad if not worse, because n/e didn't just disapear from my system when I would sit or lie down. I'm glad now that I decided to go ahead with the testing for POTs. I have had some improvement in my symptoms thanks to clonidine. Don't be afraid of getting tested or asking for tests that you think might find the problem. Just know that if they can find the cause to you health problems they might be able to help you. Even if they eliminate a lot of things hopefully it will bring you that much closer to finding out what is really going on. Knowledge is power.

Share this post


Link to post
Share on other sites

Lieze,

Although I haven't been on here for a while, I wanted to skim a few postings, and yours caught my eye.

I know this horrible feeling of anxiety, and feel my body react to everything----even a loud TV--(which isn't really loud, but seems like it to me).

This can make everything feel worse. The doctor owes it to you to help find out why you're so anxious. This is a symptom of an overactive sympathetic nervous system. A malfunction of your ANS. (autonomic nervous system). All kinds of things can cause this--------------even Celiac disease.

http://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

Advocate for yourself, or find someone who can--------- you deserve better answers----------DEMAND THEM!

The anxiety is the worst, and I have sincere compassion for anyone going through this. Anyone that doesn't, deserves to deal with this themselves to teach them a lesson in empathy.

Sending you a BIG HUG!

Maxine :0)

Hi Maxine,

I'm not sure which type of POTs you were diagnosed with, but my anxiety was very similar. I would practically jump out of my skin at loud noises. I can count on both hands how many times I would wake up at around 3 or 4 in the morning with my heart racing and my blood pressure through the roof. Going to the ER b/c I was afraid I was dying and them having no clue as to what was going on, but being told I was having an inappropiate adrenaline response. Oh, I did have one ER dr tell me I just had anxiety. Scary feeling when the anxiety hits you and there is nothing you can do about it. Horrible feeling.

I also have a lot of compassion for people suffering from this and my sentiments exactly on those with no empathy.

Share this post


Link to post
Share on other sites

Well I had my follow up on my ER visit and have a new diagnosis of hypoglycemia I guess.

She doesn't think my symptoms sound like POTS and wants to send me to a G I specialist.

She's thinking Celiac which I tested negative for at CC but she thinks the fact that I am having trouble with meat now maybe a sign that it has progressed enough that it may show up at this point.

I am just a nervous wreck and scared and so afraid of tests.

Hi Lieze,

Your doctor is absolutely correct about the possibility that celiac disease / gluten intolerance is behind your problems. And I'm excited to see that more doctors are finally looking at this. If they'd only looked at this 21 years ago, I wouldn't have wasted all these years being too sick to function ... My daughter is 23 now and I missed all of her childhood because of this ... :angry:

Many celiacs don't test positive the first time around so testing negative shouldn't discourage you from getting the gluten out of your diet. I REALLY don't think that I would have tested positive for celiac disease backn in 1990 when all of this started because I could still eat gluten without getting the runs from it. TMI ... lol .. I think I just had gluten intolerance and it was affecting my brain, etc ... go to www.glutenfreeandbeyond.org so you can see what gluten intolerance can do to you ...

It's only been in the last year that more and more doctors have learned about this. FINALLY !! There have been studies on the web for at least 8 years ...

Also, some people seem to think that celiac disease is EASY to treat.... WRONG WRONG WRONG WRONG !!! :lol:

Sure some celiacs simply have to get the gluten out of their diets to feel better but I can tell you from experience that many of these people, including me, still aren't healthy most of the time. Gluten affects the brain, etc ... I'm not sure who keeps spreading that rumor but it's not the patients I know. :blink: My doctors thought this way so maybe it's the medical profession ... of course when I went back asking why I didn't heal up majically, I got the standard " I don't know ..." .

Not to mention that celiac disease causes nutritional deficiencies which most doctors don't look for ... I found out a year after going GF that I was significantly deficient in B12 and Iron. And 3 years later found out that I was deficient in E and chromium. My integrative doctor is looking at all the complications that celiac / gluten intolerance has caused me ...

IMHO, by the time gluten has damaged your gut to the extent that you have flattened villi and thereby get the gold standard diagnosis, it's done irreversible damage to other organs too.

Ok, I'm getting off my soapbox ... :P ... hope you feel better soon ...

Oh, I had a GTT with insulin and found out that I OVERPRODUCE insulin ... which leads to chronic hypoglycemia. So be sure to have this test. Otherwise, your doc can't see what your insulin levels are ...

And ... still trying to get off my soapbox ... :rolleyes: ... I've found that eating the Paleo / low carb diet helps me control my blood glucose levels ... It took me about a year though ...

tc ... Marcia

Share this post


Link to post
Share on other sites

Hi Lieze,

Your doctor is absolutely correct about the possibility that celiac disease / gluten intolerance is behind your problems. And I'm excited to see that more doctors are finally looking at this. If they'd only looked at this 21 years ago, I wouldn't have wasted all these years being too sick to function ... My daughter is 23 now and I missed all of her childhood because of this ... :angry:

Many celiacs don't test positive the first time around so testing negative shouldn't discourage you from getting the gluten out of your diet. I REALLY don't think that I would have tested positive for celiac disease backn in 1990 when all of this started because I could still eat gluten without getting the runs from it. TMI ... lol .. I think I just had gluten intolerance and it was affecting my brain, etc ... go to www.glutenfreeandbeyond.org so you can see what gluten intolerance can do to you ...

It's only been in the last year that more and more doctors have learned about this. FINALLY !! There have been studies on the web for at least 8 years ...

Also, some people seem to think that celiac disease is EASY to treat.... WRONG WRONG WRONG WRONG !!! :lol:

Sure some celiacs simply have to get the gluten out of their diets to feel better but I can tell you from experience that many of these people, including me, still aren't healthy most of the time. Gluten affects the brain, etc ... I'm not sure who keeps spreading that rumor but it's not the patients I know. :blink: My doctors thought this way so maybe it's the medical profession ... of course when I went back asking why I didn't heal up majically, I got the standard " I don't know ..." .

Not to mention that celiac disease causes nutritional deficiencies which most doctors don't look for ... I found out a year after going GF that I was significantly deficient in B12 and Iron. And 3 years later found out that I was deficient in E and chromium. My integrative doctor is looking at all the complications that celiac / gluten intolerance has caused me ...

IMHO, by the time gluten has damaged your gut to the extent that you have flattened villi and thereby get the gold standard diagnosis, it's done irreversible damage to other organs too.

Ok, I'm getting off my soapbox ... :P ... hope you feel better soon ...

Oh, I had a GTT with insulin and found out that I OVERPRODUCE insulin ... which leads to chronic hypoglycemia. So be sure to have this test. Otherwise, your doc can't see what your insulin levels are ...

And ... still trying to get off my soapbox ... :rolleyes: ... I've found that eating the Paleo / low carb diet helps me control my blood glucose levels ... It took me about a year though ...

tc ... Marcia

I am so glad that drs are catching on. I'm also glad that the amount of gf food has expanded from just rice bread(GROSS!). Rice bread was just about the only thing available when I was diagnosed. You have so much selection now, and you can get it from WalMart or Amazon. It's made it so much more affordable in the last year.

I agree with you on all points. It took me over a year to heal from this, but my poor mother has been gluten free for over 3 years and she is still a mess. I do have to say that if I'm exposed to a small amount it takes at least a month to get over it. With the British research showing that they believe its linked to neurological disorders it's scary. I have neuropathy and though nobody knows for sure I think it's probably from celiac. Thats why I said I wouldnt wait for a positive celiac test.

Share this post


Link to post
Share on other sites

I've found that eliminating glutten, dairy and sugar have helped me ALLOT! What I believe was happening, in my case, was it set off an auto-immune reaction and my body started attacking the foods and didn't stop there, but proceeded to attack me. One of the first things a person with MS is told to get off of is dairy. We all know - sugar is bad for us. And, the glutten just makes sense. I wasn't tested positive for celiac - but know for a fact - that I'm sensitive to it. You can have food sensitivities that don't test positive - but they are there - nonetheless. I'm finding the nightshade family, rose family, bird family and latex family to be issues too. I can not under any circumstances have soy or anything from it. Even if it's in a vitamin. It requires reading labels carefully and mostly eating at home. Hope you get it figured out. It's real hard to deal with food sensitivities and takes allot of determination to do it. If I eat something that I'm sensitive to - it will cause me to have hot flashes and feel like I'm having a panic attack and will also give me a headache. It's all a reaction to the food and it makes the POTS worse.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...