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.   

 

 

 

 

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.

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??

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.   

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.

Thank you so much for the reply! This forum has helped me a lot already and I have only been on here a few days. Fortunately, my cardiologist is familiar with POTS and I should know next week if this is definitely my diagnosis and if there is anything else going on.

@p8d I didn't realize POTS will cause emotional outbursts, is this a normal issue due to POTS. I too on occasion get such a short fuse I can't even believe it, and it is usually over nothing.  I am in my diagnosis process now and have one more test Monday(TTT). Short back story: I was sent to a cardiologist for a heart murmur that my OBGYN found and was diagnosed with tachycardia and a leaky valve. He placed me on meds and after a month I became very sick and started having what I now know are "flares" which my Dr is now feeling like I have POTS due to my medical history and current issues. He took me off the medication immediately and set me up for a TTT Monday. I am learning a lot on this site and think this is going to be an invaluable forum for me. 

I will also say I am quite scared of what the future looks like since I love to ride horses and compete in competitions.