mom4cem

Hi,

There is always someone here for support.

You are a trooper to keep on going, don't forget that.

At this point I don't even tell anyone what is wrong. I'll just say I am not feeling well. That's it. Even explaining what dysautonomia is, the glazed look comes over their eyes. Even the doctors as well.

Just remember we are here.

Congrats!. Big things come in small packages. It's the little things in life that make many happy.

You keep on moving forward

Could the weather changes have anything to do with it? I know the weather affects me very much.

Hope you are feeling better.

Glad to read about your positive visit.

There should be more Dr's like Dr. G. One in each state would be nice so we all could have one. From all that I have read about Dr. G, he has the combo that one needs. Knowledgable, caring, supportive, great listening skills, etc. Seems just because a Dr. may know or think they know about dysautonomia, does not mean they have personal skills to deal with patients. I know I need a dr. who is personable and is willing to take time. Those seem to be hard to come by.

I hope the additonal meds help you.

Have a great day!

All the best during this time.

Hi Jacquie,

Hugs to you. I hope you have since talked to your friend.... It is hard for others to understand what one is going through. Maybe you could try the spoon story. I know that is posted on here as well as other sites. It may help your friends to understand what it takes for you to get out and do what you do every day.

Wish we all lived closer to support each other. Boy would that be some town if we all lived in the same one. It would be the most helpful and supportive one around.

Hang in there and I am sure there will be another opportunity soon. I am also sure that if you explain to your friends how you feel they will understand.

My b/p can go up also during an episode. My hrate typically starts to go up and stays up then gradually goes down. Chills or bathroom runs also occur at times.

Did they tell you what the results were of the TTT? Did he suggest any type of medication or treatment plan?

Welcome to the group

Glad to see your spunk is right back! The way you always post, there seems like nothing that can keep you down for long

I'll have to tell my daughter about the meaning of your name. Her 3rd grade class just finished and took their test on Australian and one of the things she had cards on to study was what a boomerang was. They also had some in school today and were throwing them about the courtyard and needless to say she got hit by a stray one near the eye. She was hit by a persephone!!

Keep smiling

I'm lucky enough that my hubby is around by the early evening. He goes by 5:00 a.m. When he does go on nights working or weekends, I worry about the "what if's" because he is not there. I've been spoiled!!! He is very helpful and with having the three kids who need to be taken care of and brought everywhere for every sport I really rely on him. Have not figured out how to split myself three ways yet So I can understand a bit.

I wish your stepdad a positive outcome to this recurrence and surgery. Keep up your strength!!! Eat!!!! Have a panera bread around? Love that place.

I have to agree with Nadine. Mine is like that also. When it finally shuts off, and it does once in a while it is like someone flipped the switch off and I feel a sense of calm. Alas, it does not last for long.

We may all have the same thing but just describing it differently. Keeps things interesting.

Glad to hear the study went well. I'm sure your body was just "letting down" in the evening.

Hopefully since you were such a good subject, that there will be something new you can do or add to current treatment.

Keeping your mom andyou in my thoughts and prayers.

Same here,the suspenese literally feels like it is killing me.

Glad you were able to do what you did. I'm sure the grandkids were happy too.

Hate to see that you had to go to the hospital but was nice to read that they were knowledgeable.

Good luck and I hope positive results come out of this!

Though I don't technically have POTS, I do have dysautonomia w/tachy and many of the same symptoms.

That being said,

Positive, is that I really have begun to appreciate the little things more in life.)

Negative, is that the symptoms can be very scary and then really deteriorate ones quality of life day to day.

Finding out who my real friends are, making new friends who understand and are there even if only in cyberspace, the closeness I have developed with family.

The loss of my "old" self even though when I was my old self I thought things could be better, now I wish I was back to that point.

Hi,

I know how you feel also. I feel the same as everyone else here posted. Tight band around the chest, elephant sitting on it. I try to work through it somehow otherwise the more I think about it the more anxious I get, I start to get lightheaded then etc.

This humid weather is surely not helping either.

I do go often during the day when I am pushing the fluids, but even more so at night, long after I have cut back on the fluids.

I also notice that during the day my urine is still very yellow looking even with pushing water all day.

Are you sweating a lot during the day? Have allergies-they can cause an increase in thirst from the histamine and your body needs to retain the fluids.

Glad to hear the combo is working. Keep going

Sorry to hear about your Dad.

I would say adrenaline also. When I get phone calls while I am at work(no one calls me at that number unless it is an emergency) my heart feels like it sinks or even like you said and jolt goes through it. I know what pac and pvc's feel like and this does not feel the same. When I feel a lot of that my stomach drops and I will get a run of tachy.

It's easy for me to say to try to relax or do something relaxing while you are going through this stress.

Keep up the fluids and maybe try to say that these are just feelings, nothing is wrong, this will pass.

I hope it does for you.

Hope you are feeling better. Glad you were able to go out and enjoy some good days.

If all goes well as I will be hopefully returning from a nice vacation the day before,,,,I will be there with bottled water in each hand.

Welcome!

Sounds good. My hubby said he would take the kids in to Manhattan w/me and take them around while I am there. We will just be coming back from vacation the day before,,,it will be a full week for us.