cvincent

Laughter is definately a big one for me Also, I like to rock out to some of my favorite music, which also just happens to be uplifting. It encourages me to keep fighting and to go one more step.

Candace

Are you feeling cold when you are shaking? I use to get this before meds. I would either be hot, my face flushed, sweating, or I would be so cold and I was shaking. After being diagnosed with POTS and learning about it. I learned your nervous system regulates your body temperature, and when you have POTS, your nervous system is not regulating your body temp. like it's suppose to.

Actually yeah, during the movie I was kinda cold.

Candace

Thats great! He sounds like a great doctor It's too bad there are so few of them. Hope he's able to help you feel better

Candace

Thanks Candace!!!!!

Your welcome

I take my beta blocker everyday in the morning regardless of how I feel. I know that if I miss a dose I start to feel pretty bad and my tachy acts up. 6mg is a pretty small dose, but I would still be careful with stopping it suddenly. If you think that you might be ok without it, I would talk to your doctor about gradually decreasing the dose. Hope you find what works.

Candace

Thats great! He sounds like a great doctor It's too bad there are so few of them. Hope he's able to help you feel better

Candace

Are you able to have plenty of fluids, or do they bother your stomach, too?

Being dehydrated can really worsen nausea. If you are already undernourished and dehydrated, that could be why it's hard to keep food down.

If this might be a contributing factor, perhaps a saline IV would help?

Most of the time I seem to do ok with drinking water, but its like my stomach just doesnt want anything. Like it wants to reject whatever I put in it. I havent thrown up yet, but usually I am only able to eat a small amount of something before I start feeling bad. I think that saline IV would really help but how do you get one? Do you just ask your doctor for it? Ive had them before but only in the ER.

Candace

The last day I was at Mayo I had a gastric emptying scan done and it showed some delayed gastric emptying. That was about 3 years ago.

Candace

Gastroparesis can get worse over time, so it may be worth having another gastric emptying scan done. As far as tests go, it's one of the easiest (nausea aside). If you do have gastroparesis, then a low fat, low fiber diet would be very beneficial. Things like Ensure can help as well.

Definitely talk things over with your doctor. I hope you can get the help that you need.

Rachel

I didnt realize that it could get worse over time. I will have to talk to my doctor about it and go over my test results again. Thanks I hope I can start feeling better too.

Candace

My 16 year old son, who has POTS, was always nauseated, feeling full as soon as he started a meal, and losing weight. He finally went to see a gastrointerologist. This doctor suspects that my son has gastroparesis, which is very common with POTS. We haven't put my son through the full battery of tests but the doctor prescribed Domperidone, a medication often used to treat gastroparesis. My son's nausea is at a much lower level now and his appetite has really picked up. He's gained at least 5 pounds in the 2 months since he's been taking Domperidone. PLEASE see a gastrointerologist. You don't need to be suffering like this, and the doctor you're currently seeing may not the expertise to help you with the nausea. Good luck!

-Lenna

I have seen about 3 gastroenterologists since I became sick, but two of them was before I knew I had POTS and they didnt really do much for me. The last one was out at Mayo, but I was only able to see her twice. The last day I was there I had a gastric emptying scan done and the test results she sent back to me showed some delayed gastric emptying but I was never given any medication for it. That was almost three years ago. Ill talk to my doctor about it. Thanks so much. Hope your son continues to feel better.

Candace

This sounds so familiar.

Have you heard of the elimination diet ? Basically you eliminate all common food intolerances (gluten, dairy, soy, corn, eggs, shellfish, etc) + all spices and anything you know hurts ... from your diet. I'd go with plain baked chicken, baked potatoes with EVOO and salt, white rice, peas, asparagus, pears and apples ... if that doesn't help you within a few days, then I check with your doctor ... actually even if it does help, I'd contact your doctor for food intolerance testing.

hope you feel better soon ...

I think ive heard of that before. Ill have to give it a try. Thanks

Candace

Have you been tested for gastroparesis? This could explain the nausea, feeling full, and reflux.

Rachel

The last day I was at Mayo I had a gastric emptying scan done and it showed some delayed gastric emptying. That was about 3 years ago.

Candace

It sounds like you have a sympathetic doctor so I would tell him what you're going through. He may be able to come up with something to help himself but it may also give him more info to help him get you in to Cleveland.

Lots of different things can cause nausea, vomiting and diarrhoea so it might take a bit of experimenting to find foods you can eat at the moment. It may be worth trying having just one food at once rather than a meal and see how you cope - maybe try some chicken, or potato, or egg anything you like really (jut a thought of mine that your stomach may find just one food easier to handle). Are you managing to drink enough? If drinking is okay try soups or milkshakes for a bit of energy.

Hope you get some answers and feel better soon,

Flop

I think I will end up telling him. He is a really good doctor. Thats a good idea about trying just one food. I had some cereal a little bit ago and I seemed to be able to tolerate that ok. Thanks so much Flop

Candace

Hey everyone.

Ever since I got sick when I was 16 I have constantly been underweight. I am a premie twin, and my parents arent really overweight so Im generally skinny anyways. Before I got sick I was at a healthy weight for my age and height. I am about 5'6", going to be 20 in march, and only weigh around 97 pounds. Lately it has been getting worse. I am nauseated quite a bit and eating makes me sick. I never really get hungry. Tonight my mom made some of my favorite food for dinner, so I was kinda excited because I might be able to eat it, but after a couple bites I started feeling really sick and the food didnt taste good. Immediately afterwards I was nauseated, had really bad stomach/intestinal cramps, bad acid reflux, and ( this may be too much information ) had diarrhea. Im concerned because I can hardly eat and have been slowly losing weight since this fall. My mom and sister think I should tell my doctor but I feel bad because he always has so much to deal with when it comes to me. Plus he went out of his way and volunteered to be my doctor. Right now hes trying to get me in at Cleveland. I dont want to sound like a hypochondriac. Plus I dont know what can even be done at this point. Ive tried anti-nausea medications before, about 2 years ago when I was nauseated all the time, but only one of the three I tried worked and it only worked for about a month. I am on 150mg of prescription Zantac morning and night, so I dont know why my acid reflux has been so bad. Sorry for so much info but I just really need some advice on what I should do. Thanks.

Candace

Hi. I was on Propanolol for about 6 months. It never seemed to work so we had to keep increasing my dose. In the end it never really did anything for me and my tachycardia got bad. I am now on Bisoprolol which works a lot better. Hope the propanolol works for you.

Candace

Hi, welcome to the forum. I just wanted to let you know that not all people with POTS/ Dysautonomia have low blood pressure. I am 19 years old , about 5'6" and weigh only about 99 lbs. I have very high blood pressure. Ive been on betablockers for the last 3 years, but only one has actually worked for me. Some dont help at all. When im not on my BB I start to go into hypertensive crisis. I also have Supraventricular Tachycardia, and even when I have been on beta blockers my heart rate has been in the 160s. Thankfully the beta blocker that I'm on now is working much better for my heartrate. Ive been sick for 4 years now. Some days are better than others. I still get discouraged and frustrated but Im leaning on the fact that God is my strength and He will see me through. This disease has taught me that its the little things in life that make it all worth it. EarthMother is right. We have this moment in time that we've been given and thats what we need to focus on. I hope that you are able to find encouragement and support from all of us here. Not all of our stories are the same, but we are able to understand a lot of what eachother's going through. We're here for you.

The LORD is my strength and my shield; my heart trusts in Him, and I am helped. My heart leaps for joy and I will give thanks to Him in song. Psalm 28:7

- Candace

Thanks for all the input. Its all pretty interesting. I am currently taking a beta-blocker, bisoprolol.

Its probably too much adrenaline and stress for me. About a month ago I was talking to my stepdad (whom I dont really get along with ) and trying to explain to him why it irritates me when he deliberatly tries to make me mad, and I was shaking so bad all over that I could hardly stand up. My legs were shaking the worst. It got so bad I just went in my room and had to sit down and wait for it to stop. It probably took about 2 hours before it went away.

Candace

I just came home from watching a movie at the movie theatre with a friend and was wondering if anyone else has this. Almost every time I watch a somewhat intense film, I start to shake uncontrolably. It usually lasts throughout the entire movie and then takes almost a half hour afterwards for it to completely stop. This doesn't just happen at the movie theatre, it also happens at home. Has anyone else expirienced this? Any idea to what causes it? Thanks for any input.

Candace

Hi. Welcome to the forum. I am 19 and have had POTS since I was 16. Almost every year I start to feel better in late spring and feel pretty well until late summer. Usually after July I start to crash.

Candace

Hahah

After stopping halfway up the stairs (out of breath, almost passing out - I'm sure white as a ghost) my friend said, "What's the matter? Did you forget something downstairs?"

I laughed pretty hard at that one,

and the one from your four year old was soo cute!

Candace

wow, I just wanted to say that I can relate to your last post. I am 19 , was diagnosed when I was 17. There are so many days when I wish that I could go back to when I was 14. When I was healthy and it seemed that there wasn't anything that I couldn't do. I hate waiting around with the hope that my doctors are going to have a breakthrough. Thankfully God is slowly teaching me to accept this and get on with my life. I know that it could always be much worse.

Candace

Hey everyone, My doctor recently told me that he is probably going to send me to the Cleveland Clinic. I know a lot of people have been treated there. I guess I'm just wondering about your expiriences. Im not really sure at this point about going. Ive had POTS for 4 years now and know what a lot of the treatment options are and I also know that there isnt a cure. Im just worried that if I go down there with the hope that they can help me feel better they might just tell me that there isnt anything that they can do that I havent already tried. I just dont want to get my hopes up and then be let down again. Thanks for any input.

Candace

I was wondering if anyone has ever been put on the medicine Sinemet? It is a medicine used to treat Parkinsons disease. My doctor told me it replaces dopamine in the nervous system. If anyone has been on this, did it help at all? Were there any bad side affects? Thanks for any input.

Candace

Just walking for a while can make my symptoms worse and then im completely exhausted. However about 6 years ago, ( before I got sick ) I was very athletic. Before I got sick in high school I was involved in Cheerleading, Basketball, Volleyball, Softball and Track. And I did well in all of them. Particularly track. I could run very fast but nothing longer than a 200 meter. Now im lucky if I can walk to the mailbox and back without having tachy and having to lie down.

Candace

I usually feel exhausted, weak, and shaky after a shower and almost always have to rest for a while afterwards...it can get extremely frustrating sometimes

Candace

Ive noticed that I sweat a lot more than whats considered "normal". I also tend to sweat worse on the right side of my body and I occasionally wake up at night drenched on my legs and back. I even sweat when Im cold

Candace

I just wanted to say thanks for posting this I found it very interesting and sent the link to the article to my doctor.