jangle

Got my lab result back from Mayo clinic. I tested negative for their nicotonic ACHR-Autoantibody. From what I understand there might be something with muscarinic autoantibodies? Does anyone know anymore details on this? Are there any other autoantibodies currently being associated with POTS?

I was feeling great late March and April no doubt. But in May I got a pretty bad relapse and it's continued. I still feel better than January and I'm jogging 5-6 miles + weights + stairmaster and all that. Hopefully I'll get back to how I was in April. My doctor stopped my Losartan in early May so that might have been why. I'm going back on it.

Well I did 6 breath/min with the pursed lips for 20 minutes twice today. I can honestly say that I did feel better after doing the technique, but I slowly went back to feeling the same. If I could maintain the "high" all the time that'd be great. It felt like what Lemons mentioned - about the same effect as compression stockings.

http://www.psychosomaticmedicine.org/content/65/5/796.full Seems the results of this study showed that biofeedback can actually increase HRV as well as baroreflex gain. These results were maintained even without practicing the technique i.e. it led to long term changes in HRV and baroreflex responsiveness. They speculate it's because of neuroplasticity and that might be the case. I guess it couldn't hurt to try their technique. I don't have access to their biofeedback software but they made it seem like you just do one natural breath every 10 seconds exhaling through pursed lips for 20 minutes a day.

I've been researching IST lately and the symptom profile as well as proposed treatments seem to be the same. There is current speculation on IST being autoimmune and/or autonomically mediated as well. So is literally the only difference between IST and POTS is that with POTS our symptoms are more pronounced upon standing whereas with IST it's more or less the same in all positions?

Haha I don't know much about those schools other than they're very difficult to get into, like above and beyond what an average medical school requires which is already a lot. Pulmonary hypertension? Yikes, I can't even imagine. Although I will say I read a study about using stem cells to treat PH which was quite successful. Even when I do start the process of medical training it's going to be quite a while before I will be able to conduct research myself. Like 7+ years. Hopefully they'll have POTS solved by then. Certainly I'll talk with professors about it in the mean time. Who knows I might end up with Dr. Levine at UT Southwestern!

I'm of the opinion that POTS is largely parasympathetic dysfunction. As such, stressors that normally don't have much affect on normal people have exaggerated effects on us. These stress responses lead to large releases of anxiety hormones such as epinephrine and/or norepinephrine which contribute to physical symptoms of presyncope and anxiety. I've found exercise to help me, especially resistance training which is known to boost the parasympathetic outflow. However, it's important that you pace your body correctly. If you feel like you're going to faint you need to listen to your body and stop. The next time exercise at a reduced intensity but try to go longer. Always listen to your body. I too would get those sensations that I was about to faint, I would stop and make sure to get rehydrated.

Keep in mind if you're doing a maximal leg press or lifting an extreme amount of weight it's not unheard of for the BP to spike to 300+/250+. However I don't think that measurement of yours is accurate, even under extreme anxiety my BP wouldn't spike past 170/100

Thanks for the supporting words, everyone! Hope y'all are feeling better as well!

Haha working on it now! Thanks for the encouragement guys!

I got a score that is typical of accepted medical students. I was completely shocked, because after I finished that exam I felt like I bombed it. Don't let anyone tell you you're not good enough, you can succeed, it's not easy and I definitely didn't do it alone, but I hope this serves as inspiration for others who are currently pursuing their dreams or pursuing getting better. I'm not in medical school yet, but this score pretty much puts me there, now I have to decide where to go!

I just read a study that eccentric exercise significantly increased both neuronal nitric oxide as well as endothelial nitric oxide in the skeletal muscle of lab rats. So naturally one can presume it's the same in humans. Eccentric exercise is a form of weight lifting in which you emphasize the downward movement or the "negative" movement. Basically you slowly ease the weight down allowing your muscles to continuously contract. I'm going to incorporate this into my exercise routine since nitric oxide has been implicated in aiding blood flow.

I wish you good luck, I don't know any POTS specialist so I wouldn't be able to advise you. But know that there are more than Dr. Grubb, off the top of my head there's Dr. Raj at Vanderbilt, Dr. Goodman at Mayo Arizona, Dr. Stewart at New York Medical College, and a few others, I believe there's a list somewhere on this site. Keep on keeping on!

Your brain is heavily influenced by hormones, think how estrogen/testosterone affect behavior and thought patterns. Likewise, in POTS you tend to have 2-10 times the level of norepinephrine coursing through your body. This hormone will make you anxious. I'm almost positive my anxiety is secondary to my POTS, POTS is just a word, what it really is - is parasympathetic dysfunction (for me anyway). And of course parasympathetic dysfunction (which I believe causes the adrenal dysfunction which causes the elevated norepinephrine) is what causes anxiety.

Just got back from gym. Ran four miles. First time I've been running in quite a while.

Yes, I also struggled with interval training at the beginning, so I stopped until I built up more endurance. Every person is different but I would recommend just exercising at a consistent pace when you're starting off.

It depends on your underlying health and if you're prone to syncope or you have connective tissue disorders. For me my doctor cleared me to exercise, so I was exercising consistently at 200 bpm.

That's hypotension, not saying that hypotension can't accompany POTS, but for me I have hypertension if anything.

It's like not even one of those tropical paradise islands either, it's like a crappy sand only island with nothing to look at.

It'd be less likely, but yes it is possible.

It took about an hour. I didn't like how when I was getting my blood drawn I apologized to the lab tech for having such an unusual request. She previously was trying to discourage me from doing it because she didn't want to have to call Mayo and set up an account. So when I apologized and said I had a rare condition, she smirked and said, "that you or a doctor diagnosed?" I realize it's pretty weak for me to complain about an off hand comment like that. But honestly I'm just so sick of being treated like a hypochondriac. The sad thing is, is that actually I really was the one who diagnosed it initially.

Yes. and Yes.

My cardiologist just says I have postural hypotension. But my BP goes up when I stand??

When my doctor told me that there wasn't an ICD-9 code for POTS in the EMR, that's when reality finally hit me. We're on POTS island.

Lol ya actually, basically I just took that study that said that 10-15% of POTS patients have ACHR autoantibodies and told her about my Raynauds, ANA, and history so she sent me to the lab to see if I could get it figured out. I went to the lab and they weren't very accommodating, but whatevs. I found the CPT codes, called the insurance, insurance gave me the green light got them to open an account with Mayo Clinic, and boom! Got the stuff sent away. Now whether or not it's actually going to work is another story.