Hoobaid

thank you for your replies.

I will check with my Primary to see what she thinks.

Thank you again for responses.

Lori

Hi everyopne. I am some what new to the forum and had a few questions.

I am having problems and have been for some time, with throwing up after some meals. I went through many tests, MRIs, etc. and they found nothing.

It seems to happen when my heart races to 160+ after a meal. I have been experimenting with different things that could trigger it. Larger meals, not being able to lie down after eating or very rich foods.

Does anyone else have problems with nausea or throwing up? Could these be symptoms of POTS?

Any feed back would be great.

Thanks!

Lori

The only way I can do shopping is with an electric cart or have my husband push me in my transport chair. The transport chair is very lightweight and easy to get in and out of the car. Most malls have the electric cart as well. I use my pretty purple walker for short trips to pharmacy or speciality stores that are not too big.

It took a while to get use to people looking at me. I don't really think they were looking, it was me. I got a handycap hang tag for my car and now I can park close.

Also, have a friend or family member take you shopping. They should be more than happy to help.

Lori

Hey Lori, I'm actually looking for a specialist....what Dr. do you use? I live in Gainesville, but I'd be willing to make the trip for someone who knows what they're doing...

ode_to_fantasy

I have a cardio named Marilyn Kuo. She is part of the Clearwater Cardio. She is great but I still am trying new things with her.

Have you tried Shands? I saw a few docs there about my Lupus...I wasn't too happy with them but maybe they have a good Cardio.

Good Luck!

Lori

The heat makes it so hard for me! Having both POTS and Lupus - SLE I stay out of the heat and sun almost all of the time.

When I do go to the store, etc... my husband drives me and drops me at the door and I get an electric cart or he brings the wheel chair. In the cooler months I can manage some by myself.

The house AC is kept at 72 and I always have a fan on me. I live in Florida, near Clearwater and Tampa, so it is HOT 75% of the time.

Lori

I can honestly say I am probably the pro of 24 hour urine test! I have been doing them each month since Feb 2004, due to my Lupus Nephritis. They check the protein in my urine.

I do put it in the frig (up to 24 hours after) marked "this is not lemonade".

I would ask the nurse at your doctors office or at the lab for more information.

Good luck!

Lori

This is such a great story. I have used the Spoon Theory to explain my Lupus situation to many people, I first heard of this story in the Lupus community.

It works great with Dysautonia as well!

Thank you for sharing with us!

Lori

I too am a member of this club. I have migranes about 5xs a month on an average. I retreat to the dark place that is quiet. They last for up to 2 days and the aftermath is a foggy brain. I see the auru before and vomit during the intense pain!

I was told once I went through"the change" (as my Moma calls it), I wouldn't have them. Well I went through the change 2 years ago (early due to chemo) and they are still with me.

I am on my third type of migrane med. Will the little man stop pounding my head, already!

I hope the best for you!

Lori

Everyday is a roller coaster ride. Buckle up and hang on!

Hi Dionna,

First off, (((Hugs))).

This is a hard thing to deal with. I can only say, take each day one at a time.

I don't make plans, except Doctors visits. When we have company, I excuse myself and nap. This seems to give me a little more time with people.

I collect Chatty Cathy Dolls. I have 29 as of today. I buy them off ebay and wash their hair, bathe them and put pretty dresses on them. It's fun for me because I had one as a child. My husband and 3 sons get a kick out of it.

Another great thing I do is watch the birds, squirls and bunnies. My wonderful husband and sons set up a nice bird area outside my window. there are 2 feeders, 3 houses and a birdbath. I sit for hours watching mother nature give me a show. I love watching them! Some days I sit and watch for hours. I have a bird book and write down the observations (when I'm doing ok) and I also name the critters. I love it!

I play board games to help keep my mind from getting mushy. Also, I do word jumbles (not good at cross word) and read magazines or a book is always there for me. I tried sewing but I wiped out too fast. I have RA so knitting, etc. is no good for me. Drawing is fun even though I can't draw! Have you ever thought of writing Children's books? My husband collects dvds so I always have a movie to watch.

I don't get out much but I do make it to the end of my driveway to get my mail. My husband takes me to breakfast, the mall or some store I like.He pushing me in a wheel chair. Most of the time I can not use an electric cart because I lack energy and it wipes me out.

I must say, I do things in small doses and know that it will take me days to recover. This is how I look at it. I can't live in a bubble. I think like a child and take things one day at a time.

One other thing, Don't try to make a "to do" list for the day. Make them for a week or a month. It's not as overwhelming that way.

We are all in this together,

Lori

I was diagnosed Oct 2005...Wow one year anniversary coming up.

I had gone to the ER for dehydration and the ER doctor did a orthostatic test and fould I had it. I then followed up with my PD and then to the Cardio.

It took a while to figure it out because I had so many other health issues going on. Looking back I know I've had it at least 3 years.

Lori

Very nice, Willow! I'm sure this took a lot out of you to post this. Thank you for sharing.

(((Hug)))

Lori

Thank you for that tip!

Sophia3

Thanks for the tip! I was hitting the wrong button.

Lori

I would also get another opinion also if one suggests doing an ablation. The problems that some have had after having it done, give me the creeps and worries me enough that I hope to never have to have it done.

Cardiactec, what exactly is automaticity when it comes to tachyardia? Can they distinguish these by looking at an ekg? I ask because I wear an event monitor and hit it when I feel the tachy coming on or during an episode. It shows sinus tachy. I can get sinus tachy even while sitting, I don't necessarily have to stand and when it does hit while sitting it goes to the 115-120's and stays for about an hour and slowly goes down.

Just wondering if they can pretty much tell by the ekg's rather than going in and doing ep studies.

Thanks.

Thank you for your reply. My pulse rate jumps to 100-110 during and after I eat.That's about the only other time. My problem is my BP goes down so low that if I had this done where it leave me? Fainting?

Lori

hi lori,

welcome around!

i can't really help you with your question as i don't know what "zapping the heart" means. maybe someone else can help you out? just wanted to welcome you!

corina

Thank you for the welcome!

Lori

Hi there Lori,

I work in/with electrophysiology. i think you are referring to an ablation. ablation is set aside for people who have one of two types of electrical disturbances within conduction pathways, reentry circuits and triggered automaticity. without getting into the nitty gritty of what these two things actually mean, POTS doesnt fall into either of these two type of electrical disturbances, POTS/autonomic dysfunction is neither a reentry circuit or a type of triggered automaticity.

POTS is what is typically referred to in electrophysiology as a type of ''automatic mechanism''. automatic mechanism's trigger heart rhythm disturbances and so the primary culprit is not the electrical properties in the heart itself. causes for these tachyarrythmia's (automatic mechanisms) are triggered from metabolic disturbances, drug toxicity, our lovely and favored (so being sarcastic) increases in autonomic tone (POTS, vagus nerve problems, pooling problems, excessive catecholamine, beta recetpor issues, etc) along with other things...

........an ablation would not fix the tachycardia in automatic mechanisms because POTS and other things that are classified under "automatic mechanisms" are the primary cause for the tachycardia, not an electrical conduction issue. ablation's only work for actual electrical conduction pathway abnormalities.....people who have ablations that have automatic mechanisms as the cause behind the tachycardia usually end up in worse shape symptomatically than before they had the ablation - because the primary problem hasnt been taken care of. the heart is actually the innocent by-stander here.

i'd make sure with an electrophysiologist that it is 100% POTS and not an actual electrical conduction problem.

Thank you so much for all this great info! It is so great to be able to share with others. Now I can have my ducks in a row.

Lori

"Zapping the heart" usually means an ablation.

Ablation is RARELY HELPFUL for POTS due to ANS problems and can often make folks WORSE.

Instead of tachycardia, folks start fainting or faint more often.

This has been discussed numerous times in this illness. Perhaps somebody can find the older links on this subject...I know it's been discussed at this site and others.

I would RUN if somebody wanted to zap me.

Also some AGGRESSIVE docs will go in to just 'take a look' and can't seem to be able to STOP themselves from tweaking or "zapping" an area.

Hope you get the answers you need.

Thank you for the input! I looked the word "ablation" and it took me to a sight that explained it. Thank you so much!

Lori

My name is Lori and I am new to this forum.

I had an appointment today with my rheumy that suggested I see an Electophysiologist for my POTS. I had been seeing a Cardio but not much luck with helping me cope with my POTS.

Has anyone heard of zapping your heart (not sure all the correct terminology) to help with the Pulse rate from racing to 160+ every time you stand up? I'm going back to my Cardio and then to see this specialist.

Anything anyone has to say would be appreciated.

Thank you!

Lori (Hoobaid)

PS I had fun reading the funny posts last night!

I've got a bunch of Autos (see signature) and it ended being the POTS that really has gotten me "down". Even went through Chemo in 2005 for Lupus Nephritis I'm still taking 3000 mg a day of Cellcept for the Nephritis.

Lori

This is so great! Thank you for the laughs!!!

...You pass out in your food before you are finished eating

...Your 80 year old father pushes you in a wheel chair

...When you have to put "create to do list" on your to do list so you can check something off that day

Hoobaid

PS Go easy on me....my first post