julieph85

Hi Everyone, I'm an old member here, but I haven't been on in about 2 years. I've had pots for 6 years. In case your wondering I still have POTS- it has improved somewhat but I still have bad days and I'm still dizzy and short of breath quite frequently. Biggest change for me was cutting out carbohydrates from my diet. Anyway, I have to get a colonoscopy next week because I've had major GI issues since I've had pots and they always thought it was IBS but now there is blood so... not good. I'm not at all afraid of having a colonoscopy but I am terrified of being put under anesthesia because of my POTS. My blood pressure and heart rate is unstable as I'm sure all of your is as well, and I experience a ton of PVC's that make me feel like passing out. I'm just very afraid I'm going to have a heart issue while under- either an arrhythmia because of having pvc's and such, or I'm afraid I'm going to have some sort of vagal episode because I have baroreceptor hypersensitivity especially in my carotids. I had an eval done by anesthesiologists and they said I should be ok but you know how most doctors don't understand POTS and some don't even know what it is. I would LOVE to hear positive experiences from others on here that have had anesthesia while having pots to help me deal with all this worry. I'm a nervous wreck but I have to have it done to find out whats causing the bleeding. THANK You friends!

I tend to have low co2 as well. My doctor said it is caused by hyperventilating

Bren, same thing happens to me. My heart rate goes down when I lay but then I feel like my head is gonna pop. Terrible

I had that as a teenager and have generlized anxiety disorder as an adult. The only thing that ever helped me was SSRI's and doing the things I fear despite my anxiety. This sounds trite but your fearing your own fear. I do a lot of self talk when Im panicky. I remind myself I'm not dieing, going crazy, or losing control. I'm always in control and its ok to have a panic attack. It WILL end.

They gave me propophol during my c section because I freaked out. Did absolutely nothing. Didn't even make me drowsy

I'm one of those chronic denialers. I say, what's pots? I don't really know and neither do doctors. It's not a disease its a syndrome. What if i don't have it? What if I have something the doctors are missing that can be cured? What if pots is just an anxiety disorder? What if I do the IVIG they are pushing on me and I get sicker or I die? How do you all answer these questions? I really believe in my heart I don't have pots because I tell myself it is like every other "howky" disease out there that chronic anxiety sufferers believe they have. You know, like chronic Lyme and CFS. It's not real and it's just a mental problem. It will go away eventually. Those are things I tell myself every day. If I pray enough and I read enough on the Internet I can make it go away. I can find out what I really have and cure it, so I can be the healthy 20 something I was 4 years ago. Yet all the doctors say I have this thing called pots. This thing they don't understand but want me to try 10 different off label drugs to make go away. How do you accept it friends? How do you embrace the illness to get better? Is this even real? How you can be so healthy one minute and so sick the next feels impossible. We are all so isolated in this illness with a weird name that no one understands. It's lonely and it's scary.

I've had it on and off daily for six weeks. It's horrible. I'm sorry

Sue I have the exact same vertigo. I feel like I can't keep my eyes on anything. When I look at things they appear to move so I have to keep moving my eyes to look at things. It is terrible and extremely debilitating.

I always feel like I have a fever in the mornings. I also get severe body aches and feel like I've been run over. When I take it my temp is low- like 97. My temp rises as the day goes on and I feel better

Personally I would not do it. The radiation isn't worth it. Your worrying yourself too much. I'm not judging you, I'm the exact same way. Hyper vigilance is a problem with is potsies. I get chest pain too all the time and when I exercise. It's something with the pots

I agree with RAMA. I also had a dr one time tell me he thinks that our bodies just THINK we are low volume and that we actually aren't. This is why I don't salt load- my pots came on when I was 7 months pregnant. My blood volume at that point was 6 times higher then a normal person. Still got pots. My volume is not the issue. My issue is my blood isn't getting upstairs because it is hanging out in my legs because I have deconditioned vaso receptors in my body from 4 months of laying flat and then given an injection of betamethasone that stimulated an autoimmune response. In my opinion anyway

4 years this August. I've heard plenty of theories but no doc can tell me why I'm so sick. I also don't believe I have pots. I think saying you have pots is like saying you have a headache. It is a syndrome which is a collection of symptoms. Not a disease in and of itself. Headaches are a symptom of something else. I'm not I even have pots as so many of my problems don't fit with the typical illness.... It is very frustrating and has stolen my life

Aseptic meningitis, kidney failure, infusion reactions, anaphylaxis, pulmonary embolism...that is not to say those always happen, but, the risk is still there. I agree though. IVIG is going to be my last option. I've tried beta blockers and BP meds and both made me worse. I'm about to do a TNF alpha blocker and SSRI. Of those don't help then its midodrine. If that goes t work then I'm on to IVIG.

That's a hard pill to swallow when your only 27

I have not but my neuro at Hopkins strongly advises that I do it. Honestly I'm so scared of the side effects. I would have to do it every month for the rest of my life

Katybug, sane exact thing with me. The ENT says I definitely have off the charts hearing acuity with above normal hearing ability. I'm assuming I have hyperacuses because normal noise bothers me tremendously and even the TV set at the lowest possible volume is way too loud for me. That never happened before I had pots. I def think I am covering the ear that is getting whatever environmental sound is bothering me the loudest. What I don't understand is why it makes my baroreceptor hypersensitivity better.

It's my understanding that narrow pulse pressure is indicative of stoke volume. I assume that is why mine narrows when I stand and widens way out when I lay down. I've also noticed the more narrow mine is the worse I feel. I think it is demonstrating poor blood return to the heart due to pooling when we stand

Could pots be a vestibular disease? http://neuroyates.com/research-interests.html

Please don't think I'm a nut. I swear this happens and there has to be a reason for it. I've noticed that since I've had pots for the last 4 years that I cover one ear all the time. Especially when I need to concentrate like if I'm reading something or driving. I literally do it everyday and don't even realize it till I'm doing it. It is definitely some sort of coping mechanism to either over stimulation or hyperacuses. Anyway, I noticed it helps my dizziness a lot when I do it and I feel calmer. I'm assuming a lot of us get dizzy, short of breath when singing or talking because of the vagal stimulation. I know singing definitely makes me feel like I'm going to pass out. I noticed one day that if I cover one ear while singing I do not get those vagal symptoms at all. It's like if I plug an ear I don't have the Baro reflex hyper stimulation anymore. Try it and see if it helps you too. I really want to know why

Joyagh- same with me. I didn't have a single symptom of dysautonomia till my third trimester of my pregnancy. I was put on strict bed rest at 21 weeks for cervical shortening. At 34 weeks I was allowed to stand and that's when my pots started. At 35 weeks I developed gestational hypertension and sudden swelling. At one week post partem my BP shot up to 170/110. Mayo says my pots is autoimmune. I have several other autoimmune diseases, some of which I had before I got pots. They told me the best treatment for autoimmune pots is IVIG. Anything else is just treating the symptoms.

Bebe127- there is no way to measure synaptic levels of serotonin. The level that you excrete in your urine does not correlate in any way with what is going on at the micro neurological level which is the level you are altering when you take an SSRI. SSRI's don't actually increase the level of serotonin in the sense you are thinking of. They prevent the re uptake of it by neurotransmitters in your brain so that more is floating around in the synapses and thus increases feelings of well being, calmness, etc. Hope that helps...

I have read that some people with bad pots have central sleep apnea episodes.when I first got pots it was pretty severe. My husband witnessed me having those episodes of apnea and I remember waking up gasping. At the same time I also would wake up with surges with my heart rate going up to almost 200 bpm. I would wake up from a dead sleep like that. Makes sense to me

The artery is done on your finger. It allows for continuous beat to beat blood pressure monitoring. Yes when I do the vasalva I have exaggerated phase IV overshoot. That happens in hyper pots from what my cardiologist said. Of coarse, I doubt they even know what that means. Phase IV overshoot means that after the initial drop in BP that you get during the maneuver my BP overshoots to compensate and goes way higher then is normal. That would be suggestive of a hyper andrenergic response or over active receptors possibly

I'm no doctor but I think only its a problem if your levels are low

I wasn't officially. I demonstrated what happens to me when I turn my head while hooked up to EKG, artery BP monitor, tilt table test at my cardiologist and at Vanderbilt. They couldn't believe what my BP and heart rate did. The most answer they could offer is that my Baro receptors are over firing. I had one doctor ask if he could do carotid massage to my neck to confirm diagnosis but I told him no because I would rather not die right now. I knew they are over sensitive just off my symptoms alone and the monitoring I had done so I don't even want to know what would happen if my carotid was provoked like that