Angelaintexas

ALSO just FYI the Pots Treatment Center is $5000, they do not take insurance, and $500 is up front to hold your spot.

I bought the HeartMath biofeedback thing from Amazon today for $180. You can look on heartmath.com and it is very informative

I got back from Dr Suleman yesterday. )) -he didn't even want my medical records I brought and he re did EVERYTHING and then some. I did 13 tests in 2.5 days, (if worried about $ one night was a sleep study so maybe not book everything in advanced so you don't have to pay for a night your not there) HAVE SOMEONE GO WITH YOU! (You will be way more than exhausted! For sure!) I paid my co pay on the first day I went, and also a co pay on the last day I went (those are the times I actually saw and talked with him, the second was a bunch of tests performed by other people)

I have an appt for The POTS Treatment Center on 2/25- 3/8, I am debating on canceling because dr Suleman said he doesn't think I will benifit from the program as much as everyone else because anxiety and hyperventilation are not an issue with me. -BUT he does highly reccomend it to most of his patients. -if I do go to the treatment center (I have a couple weeks to debate about it and still get my deposit back) -if I go and you are in town those 2 weeks we can bunk together.

Meanwhile I purchased an HeartMath off amazon like dr Suleman recommended, it's suppose to be a home biofeedback device... I'll let you know how it is when it gets here. )))

To help with above, Heart rate and Respiratory rate are not directly related. And yes one 'symptom' definitely sets off a chain reaction to trigger other symptoms.

Badhpt - I'm in Dallas now with dr Suleman, next month I go to the pots treatment center in Dallas, any experience?

Ugh, weird. Usually fever is a tell tell sign of infection, but if CBC was good, than idk? ( I would think its likely that your body is just regulating it that high, the same way that your body can regulate it low. (My normal temp is 95.0)

-sorry I can't help, maybe ask your dr to just completely work you up, like you could be producing to much adrenalin?

BUT he is making me re do all of my tests... Even though I have my medical records and all the tests have been in the last year. Hope my insurance is ok with this.

I agree he was VERY thorough, 13 tests in 3 days, gesh.... I'm already exhausted ((

Had appt with specialist today, asked him about pregnancy. He told me that 80% of POTS patients GET BETTER with pregnancy!!! He also said that they need a lot of IV fluids, and extra IV vitamines. I was shocked, and thrilled )

Thanks so much y'all! I'm about to go in, I'll keep y'all updated

Also the medicines you absolutely have to take may be substituted with something that will not harm the baby.

Sorry your having such a hard time. It's not easy. -to be blunt, my dr told me to absolutely under no circumstances get pregnant. He said it will most likely lead to me being very sick and I would have to terminate the pregnancy if I didn't miscarry first. Basically thy my body knows its not healthy enough to nourish a fetus. I'm 24, so I'm with you on the family part. -I am a paramedic so I can help with the medical point of view also. When you get pregnant, the fetus needs a lot of blood to live, POTS is very commonly associated with hypovolemia, meaning we don't have enough blood in our body. When pregnant your body needs to be able to provide for a baby. Often pts with autonomic functions bodies are 'just getting by.' -of course everyone is different and all of our symptoms are different. I would really suggest you talk to your doctor, he may have a few 'tricks' that will allow you to get by. -also think about te quality of your life if you do have a baby, will you be able to do the many continuous things mothers do. Also, if the pregnancy makes you worse.

Hope everything works out for you and I wish you the best of luck. -and I'm crossing my fingers for you that some one else on here has experience thy can relate to you.

There are 2 forms of pots. The common 'POTS, and Hyperadrenic POTS. The regular POTS is referred to the basic POTS that youll find out if google and research it. Mainly a low blood pressure. Hyperadrenic POTS is a lot less common and with hyper pots you have the increase in blood pressure and a few other different things. POTS is a syndrome under a larger umbrella of dysautonomia's, or autonomic disfunctions. For example I have hyperadrenic POTS, neurocardiogenic syncope, cronic fatigue sundrome. -all of those are types of dysautonomia, but only hyperadrenic POTS is a form of pots. Better?? -and welcome, a lot of people on here have good advice and numerous things have helped improved their quality of life and some are very knowledgable. ) Good luck to you.

Hey y'all. I have an appointment with Dr Suleman in Dallas TX tomorrow. Has anyone been to him. What do you think?!!

They need surgical intervention....

In the field hypovolemic shock is treated with fluid bolus' .... 2 large bore IVs and fluid going in as fast as we can get it to. -and with all types of shock you of course elevate the feet and keep them warm.

I have hyperadrenic POTS and had an exaggerate response in both my HR and BP during the TTT.

I also have small cell neuropathy

Hey, I have hyperadrenic pots, and with hyperadrenic pots you usually see hypertension rather than the hypotension that usually occurs with POTS. ) I have no advice as to what has helped me, simply because absolutely noting has touched any of my POTS symptoms. I did feel 'good' for 4 days a few months ago when I tried a new beta blocker -but then my BP hit rock bottom so I couldn't take it any more. -hope this helps.

And Issie, you can not feel a pulse on your wrist when your systolic BP is less than 80. That's why it feels so faint when it drops. )

Our symptoms do look a lot like hypovolemic shock. But it's not because we are actually in shock. We have low blood pressure and high heart rate and our breathing can go all over. Those are the 'signs of shock' -what shock looks like.. You have to have those 3 things to call it shock, but just because you have those 3 things does not mean it is shock. -understand better?

When you read and learn about cardiogenic shock or hypovolemic shock that's for acute problems or illnesses. Our bodies have adjusted and function accordingly. You worry about hypovolemic shock after like a major trauma where there is a lot of blood loss. It is sudden and unexpected.

Maybe I can help. I am a paramedic, and a pots patient.

Our vitals appear the same ad hypovolemic shock because hypovolemic simply means low blood volume. -POTS is a hypovolemic issue. We do not have enough blood in our bodies, that is why we need the extra salt and water, the density of salt water is the same as blood so our bodies use the salt water as blood volume.

Did you feel better after laying down? When I feel like that I put my feet up. ) it seems to help me. ) -hope I helped at least a little. And I am glad that you are feeling better. )

I have hyperadrenic POTS, which is different than just 'POTS' -my blood pressure goes up like yours did where as a lot of POTS pts have the hypotension. :/ And I do get what I call feels like a 'fluid shift' when I stand I can just feel the blood draining from my entire upper body. -Alot of times the 'tingle' is associated with your blood pooling in your feet and lower legs. -do you usually have blood pooling in your lower legs? If you do, was this different? -Maybe you're causing yourself some anxiety, (we all do, right!) Heart rate and resperation rate do not always fall hand in hand. (I am a paramedic) -Are you feeling like you're having trouble breathing? Or do you just notice that you are not breathing as much as you think you should? A normal respiration rate is 12-20 times a min in adults.

VERY GOOD TO HEAR!! Let us know when you know ))