Newbie-Frustrated

[Farmgirl85]

Hi I am new to the forum and in the process of being diagnosed. My Dr.(cardiologist) feels it is POTS, but I have my TTT Monday and then he will diagnose me. I was diagnosed with Tachycardia about 5 weeks ago along with a leaky valve in stages 2-3. My Dr. put me on medication to stop my heart form racing which it does a lot and at random times. After 3-4 weeks on the medicine I had what I now know may have been a POTS flare? I honestly thought I was having a heart attack. I ate a large dinner and took a shower and shortly after I didn't feel well at all: Dizzy, light headed, my left side of my chest started hurting, shortness of breath, shakes like I was cold, and I also felt like my body was swelling and getting hot which lasted only for about 30 seconds. but it would take my breath away and make me feel so strange when it did this. My left arm also got tingly and numb as well as my feet and legs. I ended up throwing up. I have now had 4 more similar flares, but they seem to be less aggressive each time and this seems to happen after I eat. I am on small meals now and lots of Gatorade and salt intake per the Dr. I am snacking throughout the day and it seems that I may still be eating too much because I had a smaller flare last night. I have lost 10 lbs in a week and a half and do not want o continue to loose weight. I am getting to the point where I am so frustrated I feel like I just never know if the meal will be an issue or not. For whatever reason my breakfast seems to settle well with me, but its all down hill after that most days, but not everyday. Especially in the evening. Does this sound like anything anyone else has experienced? I have also been pretty dizzy, lightheaded, and in a complete fog 24/7 for the past few days.

Also my body has issues with B12 and I tried going off of my injections last year, but my Dr. said due to the way my body was that I will need to be on the shots inevitably.

[BuffRockChick]

I wonder if you experience postprandial hypotension?  I get it sometimes, I can't figure out a pattern to it.  I get hypotension when I take a bath, so eating + hot water + upright position makes sense for provoking misery.

Good luck with your TTT! 

[HangingByAThread]

Welcome Farmgirl85,

I'm sorry you are feeling so horrible.  I was thinking the same thing as BuffRockChick (postprandial hypotension).  I get that as well but it is mainly after I eat a big meal or something with a lot of carbs/sugar (blood pressure drops and I go from being extremely hot to freezing).  I also have issues in the shower (so no long, hot baths/showers and definitely no hot tubs) as hot water increases vein swelling and leads to blood pooling.  I used to have horrible chest pain as well (where I thought I was having a heart attack) - it was mainly on the left side.  I wore a lot of holter monitors but my doctor never saw anything bad happening with my heart during the pain so I still can't figure that out.  A couple of times it got so bad at work that I couldn't help but clutch my chest and let out a curse but it has gone away since I was diagnosed and started meds, etc.  You mentioned throwing up...........have you ever had your blood sugar checked?  I ask because shaking after a meal can mean a problem with your sugar.  I was diagnosed with reactive hypoglycemia (low blood sugar after a meal) so now I have to eat small meals and/or snacks and can't let more than 2 to 2-1/2 hours go by without eating or else I will get violently ill (basically, I stuff  my face all day long and always have salty or protein snacks in my bag.  I have to eat carbs in moderation and if I do so, it has to be with protein.  If my family is eating dessert after a meal, I have to wait a bit after my meal (when my blood sugar has tanked) and then I don't have an issue with it - it actually makes me feel better.

Good luck on Monday with your tilt table test!  I hope the doctor is able to get a lot of information that might help ease your symptoms.  It must be horrible not being able to eat and losing weight on top of everything else.

[KiminOrlando]

Needing B12 shots tells me that you have pernicious anemia, most likely. I have been told this is a common co-symptom with gastroparesis. Have they ruled this out? Eating and throwing it up while feeling horrible is a mild form of gastroparesis. Yes, mild, even though it probably doesn't feel mild. You don't want to know about moderate and severe forms. 

Most likely a gastroenterologist would have to make this diagnosis and they would need to be familiar with dysautonomia. Most PCPs just won't go there. In the general population it is relatively rare, but in this crowd, fairly common.

Hopefully, you don't have it and it turns out to be something less disruptive. 

Take care.

Kim 

[DizzyGirls]

Like Kim said, pernicious anemia and gastroparesis.  Watch what you eat.  Not only small meals, but also the fat intake.  Meat is harder to digest than a lot of things.  Eggs are easy, as well as greek yogurt and milk.  Liquid always digests better than solids.  My youngest has had a couple of bouts with feeding tubes due to gastroparesis.  We stumbled on to the fact that she had POTS because, due to the gastroparesis, she was eating a lot of Lipton noodle soup.  Her dizziness had improved some and it was getting a little easier for her to eat.  The salt!  You might need to take it easy, even when you are feeling ok, as this seems to keep reoccurring.  Also, I would look into the postprandial hypotension as well.  Lots of people have that.  Best wishes!

[Farmgirl85]

Thank you all so very much for your information! I had my TTT today and hopefully will know more soon. All I know is that I did have a 30+ increase in the upright position and a 30+ decrease in the laying position and I had dizziness and numbness through out the test. I am unsure about my blood pressure other than them saying something to one another about it changing, but I am not sure what it looked like. My heart also raced whenever I would talk. I do have a leaky valve that the man doing my test said could be an underlying cause of POTS? I haven't read anything about this being a cause. My cardiologist is suppose to call me to set up an appt with him this week to go over the results. I don't have any blood sugar issues and I saw a gastroenterologist less than 2 weeks ago to rule out any issues there, but I didn't go any further after they did an ultrasound and the test were I had to drink barium. They all came back completely clear. I will look into all options though, because I definitely don't like feeling this way. I have figured out that caffeine will on set a flare.   

[Bluebonnet08]

I can't eat anything that is high carb/ high sugar or I will get those symptoms after a meal.  I've done better on a low carb diet.  I like it now and it seems like it helps to control my symptoms a bit.   

[KiminOrlando]

On ‎7‎/‎24‎/‎2017 at 1:34 PM, Farmgirl85 said:

I saw a gastroenterologist less than 2 weeks ago to rule out any issues there, but I didn't go any further after they did an ultrasound and the test were I had to drink barium. They all came back completely clear.

Those tests would be clear if you had gastroparesis. Your gastro would have to know dysautonomia to know to look for it. I had to ask mine to run the test. It is some kind of nuclear test where they put some kind of radioactive isotope (I think) in scrambled eggs and you eat them. They take pictures of your stomach for the next several hours to see how long it takes them to move through.  

If you have gastroparesis, you would be having trouble going to the bathroom too. The B12 deficiency is another big tell which is why I mentioned it. Weight loss is another.

If you think it may apply, you are probably going to have to ask your doctor about it specifically and ask for the test.

From what you are saying, this might not be what is going on because you aren't describing tremendous pain. It could just be a POTS episode where it is effecting smooth muscles as described in Dr. Goldstein's book. This is still very much a problem.

http://www.ndrf.org/NDRFHandbook.htm

There is so much to learn.

I ended up telling my gastro about the book and he had me email him the link. Maybe yours will be interested too.

Good luck.

Kim

 

[Farmgirl85]

On ‎7‎/‎27‎/‎2017 at 1:15 AM, KiminOrlando said:

Those tests would be clear if you had gastroparesis. Your gastro would have to know dysautonomia to know to look for it. I had to ask mine to run the test. It is some kind of nuclear test where they put some kind of radioactive isotope (I think) in scrambled eggs and you eat them. They take pictures of your stomach for the next several hours to see how long it takes them to move through.  

If you have gastroparesis, you would be having trouble going to the bathroom too. The B12 deficiency is another big tell which is why I mentioned it. Weight loss is another.

If you think it may apply, you are probably going to have to ask your doctor about it specifically and ask for the test.

From what you are saying, this might not be what is going on because you aren't describing tremendous pain. It could just be a POTS episode where it is effecting smooth muscles as described in Dr. Goldstein's book. This is still very much a problem.

http://www.ndrf.org/NDRFHandbook.htm

There is so much to learn.

I ended up telling my gastro about the book and he had me email him the link. Maybe yours will be interested too.

Good luck.

Kim

 

Hi Kim,

     It is definitely worth mentioning. Right now I feel like a human pin cushion and a test dummy:( I will say I haven't had any stomach pain at all, but have had a lot of burping and I feel bloated in my chest after I eat. I feel like my body just plain out hates me right now. I have great days and great moments followed up by awful days and horrible moments:( I am waiting on test results form my Cardio, but he has told me it's looking like he may need to send me to a neurologist. Also since POTS causes high anxiety at times, has anyone seen that taking anxiety medication has helped??

[Farmgirl85]

On ‎7‎/‎26‎/‎2017 at 10:08 PM, Bluebonnet08 said:

I can't eat anything that is high carb/ high sugar or I will get those symptoms after a meal.  I've done better on a low carb diet.  I like it now and it seems like it helps to control my symptoms a bit.   

Thank you bluebonnet08. The smaller meals have definitely help and its hit or miss as far as what I can eat or cant, but I am going to try a low carb/low sugar diet. I do know caffeine and red meat make my symptoms a lot worse for whatever reason.

[HangingByAThread]

Hi Farmgirl85,

Have you ever seen an allergist about your issue with eating beef?  I ask because when I was in my 20s my allergist discovered I was allergic to beef (I always knew I was allergic to cow's milk since I was a little girl but I had never heard of anyone being allergic to beef). Beef used to give me pretty bad stomach aches........like it was impossible for my body to digest but I never made the connection until the doctor pointed it out to me.  It sounds a bit crazy, but I've stumbled across a few articles lately about recent studies that show tick bites cause certain people to become allergic to red meat.

Glad the smaller meals are helping you.  Good luck and I hope you continue to find relief! 

[Ashc]

You should be watchful of your diet, that is another safe way to avoid.

[Debbie Rose]

Hi Farmgirl85,

  I too eat small meals and low carb/sugar meals. I used to be a sugar addict but am now a reactive hypoglycemic if I eat something too sweet all alone my sugar can drop extremely low.. So if I want something sweet I will have a hard boiled egg or baby bell cheese and have a "small" amount of chocolate (my weakness)

  Long before I knew what I had, and after being diagnosed with fibromyalgia I could no longer take hot showers without cutting the shower short and collapsing onto my bed short of breath and tachy. 

  I can get chest pain just sitting in my chair and I ignore it now unless it lasts more than 5-8 minutes.

  I take half of a 0.5mg clonazepam for the chest pain and my anxiety episodes-and it does help

   It does sound a bit like gastroparesis too, which along with the numbness and tingling and dizziness all go together. My GI guy did not feel I needed testing as the symptoms were right on for the diagnosis

Hang in there and go slow with your dietary changes, our bodies are sensitive to changes too

 

 

 

 

 

[Farmgirl85]

11 hours ago, Debbie Rose said:

Hi Farmgirl85,

  I too eat small meals and low carb/sugar meals. I used to be a sugar addict but am now a reactive hypoglycemic if I eat something too sweet all alone my sugar can drop extremely low.. So if I want something sweet I will have a hard boiled egg or baby bell cheese and have a "small" amount of chocolate (my weakness)

  Long before I knew what I had, and after being diagnosed with fibromyalgia I could no longer take hot showers without cutting the shower short and collapsing onto my bed short of breath and tachy. 

  I can get chest pain just sitting in my chair and I ignore it now unless it lasts more than 5-8 minutes.

  I take half of a 0.5mg clonazepam for the chest pain and my anxiety episodes-and it does help

   It does sound a bit like gastroparesis too, which along with the numbness and tingling and dizziness all go together. My GI guy did not feel I needed testing as the symptoms were right on for the diagnosis

Hang in there and go slow with your dietary changes, our bodies are sensitive to changes too

 

Thank you:) I can't take hot showers anymore either and my chest pain and tachycardia are so sporadic I feel like there isn't any rhyme or reason. I really appreciate everyone's advice and thoughts. I am doing much better emotionally dealing with all of this and am learning to cope with the symptoms. I am going to ask my Dr about a medicine for the chest pain and anxiety.