julieph85

Naomi- no meds here. I don't even salt load. The only thing I do is drink lots of h2o and avoid sugars till the evening. This has helped my OI immensely.

Hippychic- yes. After I delivered my twins my pots was terrible. I wa able ro get out of bed and take care of them but I had major shortness of breath issues. Then my doc put me on a beta blocker that literally knocked me on my butt. It made the shortness of breath and dizziness so bad I could not even sit up. After a month of that I stopped it and my pots greatly improved and since I go through periods of flares and then slight remissions

This is going to be me one day!!!

I know some of us do have OI all the time and are bed ridden etc, I've been there myself so I'm with you 100% since I have seen improvement since my initial onset during pregnancy, I've noticed my OI is not every time I'm standing, and there seems to be no rhyme or reason to it. I feel immediately short of breath and dizzy upon first standing, every time I stand up. It is also worse the longer I've been sitting or laying. However it stops after the first 30 seconds and my HR returns to semi-normal levels (80's). At that time I would consider myself to not be experiencing OI. However there are plenty of times during the day that I have trouble standing and my HR stays in the low 100's and I'm short of breath. If it is a true dysautonomia, why isn't it all the time? I would say 50% of the time I'm standing I'm OI and 50% feel almost normal. What gives?

I think it's funny they've singled out Zithromax. What they are talking about is long QT syndrome and torsaddes de points . They are a known complication of the entire mycin family- erithromycin, azithromycin (z-pack), etc. A lot of drugs other than those antibiotics can cause long QT as well and are actually much more likely to cause it. I think is applicable to pots though. I won't take any med that causes long QT because how sensitive our hearts are already

I have an appt next week with Dr. B at the autonomic clinic. I guess this is directed more at the people who have been to several pots specialists. If this was my only shot at diagnosis I would absolutely know its worth it! I'm asking this because I've been to mayo, dr abdallah, and dr Khurana. They've all agreed I've got pots, and they all disagree on the cause. I'm not looking to drive 10 hours by myself overnight to hear- you have pots, here is some midodrine and here is some Florinef. I'm looking to find the cause. Have any of you had good, Insightful experiences at vandy? Thanks!

I've been off and on plaquenil for my RA for years. Since I've gotten pots I've been on it for the last six months. It is hard to say of I've gotten improvement from it. It definitely helps my RA. I have noticed a slight reduction in heart rates over the last 3 months but I attribute that more to cutting out carbs.

Does anyone else have this? Mine is so sensitive that anytime I turn my head my Bp drops and I feel like I'm gonna pass out for a few seconds. It also gets stimulated when I do things like take a big drink of water, or take a deep breath. Each time I will get an intense pressure in my head, my hearing goes out for a few seconds, this is followed by pre-syncope type feelings for a few seconds and then it stops. It makes it really hard to turn around and look at my toddlers in the car. Oh, it also happens if I lean forward, bend over, or look up at the sky. Basically any time I stretch those carotid receptors. I wonder why they are so sensitive?

My pots actually started during the third trimester of pregnancy so I agree the increased volume didn't help me either. I also got much worse after delivery and then slowly improved

Rich, no one has made a connection yet but there clearly is one. I obviously have a major adrenaline rush in response to carbs but no one knows why.

Your not! Mine is exactly the same. Sitting-upper 70's laying- lower 70's standing 90-110. I also feel horrible If it goes beneath 70, like I'm gonna pass out.

I'm like Rama- alcohol helps me calm down

I have comorbid RA with extremely high ANA and ssa-ro antibodies. This leads goodman to believe my pots is autoimmune.

I saw an endo to figure out what's causing my adrenaline reaction after I ingest carbs. I also feel greatly improve when I have eaten in a long time. Got my results today- 24 hour urine histamine was 274. Range is 0-65. My endo said she doesn't know what to make of it. She's thinking mastocytosis or an allergy causing my pots? She doesn't know where to send me to find out. The only thing is that my tryptase is normal. Could it still be a mast cell issue if i have normal tryptase? Also, are there other things that could cause such high histamine besides mast cell issues? I know this is the key because histamine is a potent vasodilator so it must be being released when I eat carbs. My heart rate drops 25 bpm when Im hungry! What do you guys think?

My HR does the exact same thing as yours. Because of this, I have had a difficult time getting diagnosed. The best answer is that it depends on the doctor your seeing. The only pots specialist in my state says I don't have pots because I don't have a sustained 30 bpm rise. I went to mayo in AZ and dr G says that doesn't matter, it only needs to be an initial rise. What does your BP do? Mine rises initially then drops a little, just like my HR. The important thing to focus on is that there is still something wrong. A 30 bpm HR rise is not normal, even if it is just initial.

Hi! Im Ok. My pots is a 5 on a 1 to 10 I'm currently not on anything for my pots but I take an immunosuppressive for my RA. I also eat a very low carb diet and that has helped me the most so far. How are you?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

Thomas, I feel for you and your wife. I have 2 year old identical twin daughters and for the first half of my pregnancy they told me they were mono amniotic. Scariest time of my life but thank god they saw the separating sac wall in the 2nd trimester. Im so happy they were okay!

My pots started at the end of 14 weeks of strict bed rest during a complicated pregnancy. I'm 100% positive my pots was brought on by the bed rest . I think it triggered an autoimmune reaction in me when I tried to start standing up after 14 weeks of laying on my left side. My docs all tell me they don't think it was the bed rest because my pots acts like an AI disorder and flares and remitts. However I disagree with them because I never had a single dysautonomia symptom until I tried standing after 14 weeks of laying. I cannot deny that connection

I get it in my feet and lower lip. It is so annoying!

Thanks guys. What has me confused now is would it actually be safer to get it with epi? The reason I say that is because the dentist told me that they actually use the epinephrine with the procaine to keep the procaine from leaking out of your gums and into your system. You actually absorb way more procain if you don't use the epinephrine. Procain is a sodium channel blocker and is a cardiac depressant. It can dramatically drop blood pressure and heart rate and even cause cardic arrest in some people. So what do I do?! Tachy and anxiety with the epi or risk bradycardia and hypotension with the procaine?

I believe it is because of parasympathetic withdrawal. When you first wake up you get a burst of sympathetic activity that lasts until late afternoon. The over active SNS contributes to the tachy and BP problems. It also is related to the NE release which is why I think I'm over constricted during the day and very dilated in the evening and at night.

My dentist told me I need a deep cleaning. This will require local anesthetic. I've heard us potsies can have a bad reaction to novocaine/ epinephrine injections. Will I be okay? Has anyone else had dental work done with pots? I'm so nervous.

I drink 2 glasses of wine every night no problem. Before pots I drank a lot when I was in college. I don't believe their related in my case.

Sue , this also isn't orthostatic for me either. I think it is related to the bigger disease picture that pots is a part of. I also think there is an endocrine based cause for it because of how dirunal it is.