SeattleRain

After several long weeks of trying to treat my dog's un-diagnosed illness, I finally had to put him down today. I've been crying like a little girl about it for a few days. It's been so rough. Has anyone else had to put a furry friend down?

I surely wouldn't have any invasive procedure like this without sedation ever again. I can imagine how bad a colonosopy would be. She says most patients that opt out of sedation do so with that procedure. I don't think it would be worse (for me). I can handle horrible pain an discomfort but not gagging, vomiting and being restrained while I can't breath. I'm incapable of imagining anything worse. Maybe both at the same time lol.

They kept calling me brave. On the phone, scheduling the appointment. Then there at the procedure: "You're so brave! Wow!". I'm thinking to myself "Man, these nurses sure like to flatter patients here. It can't be THAT bad." LOL. Yes, yes it is that bad!

Thank you for the comments, guys. I was not angry at any point. I felt like I had made a horrible decision more than anything else. Not entirely their fault as most of them preferred I get sedation but I wouldn't have any of that. If they would have told me adamantly how unbearable it would be even with the throat spray I would like to think I would have believed them and got the sedation, but I just don't know. Either way, she said younger people's GI sense is more heightened and recommended I take propofol next time to completely knock me out as "conscious sedation" I may still be aware and have problems like that. I agreed. Please, bash me over the head with a frying pan if need be.

Thank you. My throat really hurts but that's the extent of it. I picked up some triple peanut butter ice cream on the way home and that helps a little bit! No, they didn't explain to me that anything like this could occur. The referring doctor thought no one could opt-out of sedation. I had her ask the Gastro that was performing it and she responded that many of her patients opt out of sedation. It wasn't until after the procedure I asked about this again and she said that "Most opt out sedation when it's a colonoscopy". No wonder! Who in their right mind could handle something like that? Never again. Not for $100,000 in cash!

After ACA was enacted my insurance company informed me that: My premium is going to double. My deductible will go from $2,500 to $7,500. My co-insurance will increase by 5%. My co-insurance limit will be raised an additional $2,500. I no longer receive 4 free doctor visits per year. My co-pay will raise by $10. What makes it all worth while is that if I ever get over the anxiety of taking multi-vitamins and graduate to heroin, I can have chemical dependency counseling as well as maternity testing (in the event I have a sex change). Sarcasm aside, insurance companies are cutting corners on less common problems such as AD because of their enormous cost increases with having to provide additional coverage as well as take on those with pre-existing conditions. To think they're going to bend over and take it is wishful thinking. We will always, always be the one footing the bill in the end. I don't blame the insurance companies for this.

My doctor at one time explained to me how anti-depressants have an effect on the sympathetic/parasympathetic nervous system and can help improve autonomic dysfunction in that regard. I can't remember the details so not in a position to try and explain it. I was told by my neurologist that anti-depressants are gene based so if you have a sibling that's tried one and it works really well for them, chances are it'd work well for you, too.

I had my upper endoscopy this afternoon. I opted out of sedation due to fear of how I'd react to the meds. Little did I know the nightmare that was about to unfold before me. I was under the impression (from how it was explained to me) that the purpose of the "conscious sedation" was to just relax me so I don't have much anxiety. Words escape me when I try to describe how unbelievably unbearable it is to have a wired camera shoved down your throat as nurses are holding you down, disregarding your retching and physical signs of distress. "Physical horror" comes to mind. I would rather of had a blowtorch burning my eyeballs. It was seriously that bad. Not only would I have opted for complete sedation, I would have prefered to die to an allergic reaction than go through the endoscopy while conscious. It was literally the worst experience I have ever had in my entire life. Please, get sedation if you're going to have this procedure.

I drink about a gallon of spring water a day and I'm never thirsty throughout that time. From the articles I've read, if you're thirsty, you're not drinking enough water (they're suggesting if you stay hydrated you should never really get thirsty). Before POTS I never drank much water so it was a big change. It's hard to get used to it but if you force yourself to just drink a bunch of water regularly through out the day, it becomes habit and pretty easy. Now I just keep my gallon jug by me and probably every 20 - 45 minutes I'll just take a few big chugs and that's it. Usually if I start feeling icky I'll realize I haven't drank much water and do it right away, feeling better shortly after. Now, I only drink spring water and nothing else. I used to think water tastes yuck but now I think it tastes incredible and every other liquid is disgusting lol.

I haven't been here in a while and had a few questions for members as well as an update. I slowly started exercising regularly in August. It was extremely difficult. I started walking around my kitchen. I bought a pedometer and did 1,000 steps for first few days, then 2,500. By end of September I was doing about 10,000 steps a day. At that time I started exercising on my stationary bike and slowly grew in intensity. I also will rotate between doing that as well as walking up and down my stairs. This has been the most helpful aspect of recovery as my heart feels a lot stronger and can handle things better. The bad news is I have bad gastric problems -- horrible heartburn and can't eat a lot of foods now. I have an upper endoscopy this Friday -- I think I may have an ulcer. Questions: 1) For those that take Xanax, what was your starting dose? 2) Has anyone ever had an upper endoscopy and if so, without sedation? I'm terrified of sedation with my heart problems so I opted out of it....

"Symptom duration was 4 years" I think what they're getting at is people with autonomic dysfunction become deconditioned after the fact -- not before. For the past year my physical activity has been quite minimal and I would consider myself to have become deconditioned. This was because of the symptoms -- not the cause of them. I sort of dug myself into a hole and it's been difficult to get out of. I think staying active is imperative to retaining or gaining endurance and stamina and helping alleviate symptoms. There has been a plateau for me but without exercise I tend to get worse. That's my 2 cents.

I'm curious to know if anyone gets a pressure in their neck. On the sides of my neck (like, where my arteries are) -- it feels like they're swelling up and about to pop. This symptom gets worse when using my muscles, such as walking up a flights of stairs/hilll - or even on standing up.

You sound just like me. I'm glad to know I'm not the only one. I'm so disappointed in the way doctors go about providing care to patients. If you're worried about Pheo, get a 24 hour urine analysis. It's a relatively cheap lab test so it's much easier to get approved. You might want to get your blood cortisol levels checked if you haven't already, too. Past that, good luck getting a doctor to refer you for an MRA/MRI or CT/CTA. They are so anal about these tests. I've told every doctor I've been to that "Hey, if you have a problem with justifying this to my insurance company, or you think maybe I don't have this and I'm just paranoid, I will pay for the testing out of my own pocket - all $4,000 of it. I want the test". And they say "ethically" they won't, because they have to agree with me to refer testing. I try to rationally explain to them the simple thought process behind why I could very well have aortic dissection and they want to hear none of it. It's almost as if, because it was my idea, they have to get defensive and before even knowing what's wrong with me, tell me that I don't have it. "You worry too much, you don't have aortic dissection". Amazing. I present nearly every symptom of chronic aortic dissection. The initial attack I had, lo and behold, is known to cause aortic dissection (intense valsalva). Yet, somehow, my doctors intuitively know that I don't have this or that wrong with me. I'm rambling now but you get the point. I dislike doctors and their narrow minded thought process. I feel like I have to buy an MRI machine to get an MRI. It's pathetic. More money is lost from my own pocket and my insurance companies in ER visits and repeat echocardiograms than would have by giving me the stupid tests that I want, which at a bare minimum, would have given me peace of mind.

I wish I had the energy for a garden, too. I eat a lot of fruits and vegetables but it's tough getting to the grocery store on a regular basis to get fresh produce. However I recently signed up for Safeway delivery and it's working out pretty awesomely. I also can't handle high carb foods. In general I think it's high calorie foods (high carb foods tend to be high calorie, anyways). My theory behind it, is it takes blood away from circulation and into the abdomen to help digest/process and the result is I feel horrible and tachy. Pizza, pasta and red meat don't click with me anymore

Interesting... What's artery bp monitor? Is that different than the cuff they put on your arm? Do you know how you respond to a valsalva maneuver?

+1 I have a similar issue. My HR is around 60bpm when supine. If I so much as turn my head, or just roll onto my side, my HR shoots up and I get this huge pressure feeling on the sides of my neck. I used to get it like crazy in my head, where it felt like my head was going to pop, but it now happens a lot more in my neck...

This is something new I have read about with symptoms similar to POTS. Has anyone else read about this/been tested for it? I have autonomic testing at UW coming up very soon and they test for this... Also off topic: Does anyone know how I can pay for/schedule my own imaging tests? My cardiologists I've seen refuse to refer me to get an abdominal CTA or MRI. I fit the symptomatic criteria for chronic type B dissection, which lo and behold can be caused by a valsalva, which is what caused my symptoms. But because I don't have abdominal pain (which 30% of patients do not have), he will not refer me to get the test even if I pay for it out of pocket. The worst that can happen is I spend the money, they make money, and I have peace of mind. So frustrating!

Hi everyone, It's closing in on my 1 year anniversary for when my initial onset occurred. In the past few months I realized that my onset was caused by an intense valsalva maneuver. I'm trying to narrow down the possible adverse effects of a valsalva maneuver. There is not much information on the issue other than the immediate effects (huge spike in blood pressure, increase in thoraic cavity pressure, reduced venous return, activation of the parasympathetic nervous system (i think) ). One thing that interests me is aortic dissection. Weight lifters who perform valsalva while lifting can experience this - it's a tearing or rupture of your aortic vein (or artery, whatever). Pretty much the same symptoms of POTS while in many cases a severe pain in the chest... Anyways, if anyone has info on this topic and has researched it before, I'd greatly appreciate it. Also, if anyone has done valsalva testing from a neurologist I'd be interested in hearing how that process goes.. Thank you!

I took Piracetam for a while in 2010 as part of a lucid dreaming experiment http://en.wikipedia.org/wiki/Piracetam#Piracetam_and_lucid_dreaming I found that it helped me concentrate and work better. I believe the dosage was 5,000mg/day, split into two separate doses.

I would prefer one at a time but he wants me on both right away

Thanks for the response. It seems IMPOSSIBLE to me that something isn't wrong with my heart or lungs. I was on Klonopin (clonazepam) for a week and it did not help... My cardiologist wants me on Florinef and Clonidine after the echo...

Does anyone have a really hard time breathing, ever? A couple weeks ago my heart started feeling worse and now I have problems problems. I was in the grocery store on Monday and practically collapsed because I couldn't breathe and had to be rushed to the ER (Where they found nothing). I'm getting a resting echocardiogram/bubble contrast study to check for Pulmonary Hypertension next Monday... Just curious to know if others have experienced this - it feels like there's a pressure in my lungs that resists my breathing in...

I did some very, very strange things while taking Ambien... I sent weird text messages to my gf at the time that said things like, "becca where are you i can hear your teeth" and "the cheese dispenser is coming after me." I stopped taking it after I started leaving the house. At 3am I took one dog for a walk while telling the other to watch over the "cryptonic" tapes so the aliens don't get them...

Nope

Thank you for the response. I was going to send you a PM but it says you cannot receive private messages