StayAtHomeMom

It may. When I was first sick I was talking to my mom about the research I was doing to find out what was wrong with me. I had looked at POTS and was talking to my mom about it and then all of a sudden I stopped mid-sentence. Something clicked. I dismissed it early in my research because I didn't faint. Then I did some more digging and found out only like 20% of people with POTS actually faint. It started me on my road to my diagnosis.

Most POTS patients should have had it ruled out before their POTS diagnosis. They did the urine catacholmine test on me. It was normal I had really hoped that was what my problem was.

Beta blocker and midodrine are also common treatments. Most doctors really don't know what POTS is. I think they have a 15 minute discussion about it in med school and that's it. It really isn't that common.

I gave him some dramamine. It didn't really help so he went to sleep. Next morning he was fine except he was still walking funny. Monday I had the Chiro check him out. He said he isn't showing signs anymore. He might have fixed it by himself because that night he would sit a certain way that it didn't bother him and may have adjusted everything back. He sees my specialist tomorrow to test him for POTS. I figure I will just add it to the list of his symptoms. Dizziness isn't anything new for him. He suffers a lot of things in silence because I am over protective. But he said usually the dizziness isn't bad. It is mostly lightheadness from what he describes though. I will be posting an update soon about him though.

I am sorry the PA did that to you. One of my closest friends is overweight and she fell last year off of steps. Doctor tried to tell her the pain she is still feeling is because she is so overweight. Even though the MRI still shows swelling and a bone bruise. After almost 2 years. She avoids those doctors. She had one doctor who came in see her and started in on her weight. She didn't say a word and just walked out while the doctor was mid-sentence. I would try another appt and just wait for the actual doctor. When you book the appt tell them no for seeing the PA. Most places give you the choice.

I have not tried florinef. But I have noticed most people with POTS seem to be worse in the morning. I am actually the opposite. I feel worse in the evenings. But I would say 75% of people seem to be worse in the morning. Glad your appt was productive.

I had to see a dermatologist and ended up having to use a generic form of Accutane. It was ridiculous how bad my acne still was at almost 30. Best thing I ever did.

I never breastfed my boys. I am curious, can't breastfeeding cause dehydration easily in mom?

That sounds amazing. I am glad you found a combination of things that work for you.

Quick question about MCAS: can a single food you have eaten mess with you for 2 weeks after you have eaten it?

Yes. He sees my POTS specialist Thursday to start his testing. His HR changes an average of 70 points laying to standing. He usually is about 70 laying and standing up and still has it go to 140. His other symptoms are fatigue, chest pain, heavy limbs, chronic headaches, GI issues... typical POTS stuff. The only reason I am not 100% sure he has it as well is because his BP will sometimes plummet when he stands. Not always but his symptoms really get bad when it does.

I hope you feel better soon. Maybe you will get lucky and it won't be lifelong. Any medication ideas yet?

Ok. I will have to talk to him about it tomorrow.

Can a chiropractor do the maneuver as well? We are due to see the Chiro in the morning. And honestly every doctor I have taken him to locally has been a joke. He is technically pediatric even thought he is 5'10 and 180lbs. And most of the doctors he has seen has just dismissed any of his issues. His PCP is great but he is super hard to get in and see. My son has always been pretty clutzy. At a young age it was due to his poor eyesight. Then he got glasses so things were better for a little while then he started growing. And his feet always grow before the rest of him so he is used to banging in to things when he walks. He thinks his walking this morning is more funny than anything. He is just happy the rest of his symptoms are gone. Honestly I think his symptoms last night were kind of freaking him out. Walking a little crooked today is a cinch after last night.

I remember seeing some people post on here about their vertigo. My son came home last night and and was feeling off. He couldn't walk straight, clumsy to no end. The world was spinning and moving. Eyesight was blurry. Nauseous. Bright light from the TV was bothering him. Best way he felt was sitting kind of curled up against the back of the couch keeping is eyes downward. If he moved his eyes or head it got worse. I gave him some motion sickness mediation last night. Didn't seem to help much. He really didn't want to go to the ER so I have been waiting it out. This morning he is walking funny still but he says all of the other symptoms are gone. He says he feels like a Spinda though (it is a Pokémon). My question is when you have vertigo is it normal to come and go in about 12-24 hours? Does his experience sound similar to anyone else. I highly suspect my son has POTS, he sees my specialist on Thursday to confirm. So I try not to run him to the ER over every little thing. But this is a bit disconcerting watching my son go through this. I mean I have lived it but I feel so helpless watching my son go through it and can't help.

Best thing you can do is stay calm and request or find a different doctor. There are a few good ones in this state. They are just hard to find.

I did the Mirena when it first came out. I had it for the full 5 years. Didn't get pregnant so it worked. That being said I did have a light period ever single month the entire 5 years. I was that lucky 1 percent. After I had it removed I went through planned parenthood (no insurance) and did the depo shot for a year and then they paid for my tubal. Some people have said horrible things about the Mirena implant but I didn't have an issue with it.

I live in Kentucky and when my sister in law lived here she had a hard time. They wouldn't listen to her either. Said she was a hypochondriac. Said it was depression. She moved to Louisiana. And she got diagnosed with MS.

Personally I think that is a great start. You seem to be way more prepared then I was. Then again I was looking for confirmation of POTS from my cardiologist so I imagine my questions would have been a lot different. Only thing I can think to add would be compression. Some people on here like them. I haven't tried them.

That is what I would consider blood pooling. I would ask your doctor to be sure. I am not a hundred percent sure what blood pooling symptoms would be either.

Propranolol is usually the go to for POTS. Personally I did not tolerate it well. I needed the cardiac specific beta blocker. But my specialist tried to put me back on it. If your cardiologist won't put you on it talk to your PCP about the change. My PCP had me try the 24hr metoperlol vs the 12hr metoperlol. My PCP is amazing and doesn't mind working with me to better my health.

I would try taking it every day or 2x a day. Whatever is prescribed. If you don't take it as directed you can have rebound tachycardia. My PCP like to fuss at me for not taking it 2x a day because of that. It may help more by taking it as directed.

Did you have a illness or injury that triggered yours at that age? Most of my research has shown it usually starts younger but it doesn't seem to be ruled out just because you are older. To me it seems more common in people in the 20s.

Do you need a referral? Another clinic is this section of the country is Cleveland Clinic in OH.

There may be a program like a group home that may help. Or I have heard of programs that pay your rent for a little while. Try your local housing programs as well. Usually if you are disabled in some way they try to help out quicker. I am sorry your life seems to be turned upside down. Hopefully something happens soon that will help. Good luck.