Lemons2lemonade

aww thanks tennille, i think of it the same way I would love to go to Tibet and learn some meditation from a real monk! Plus, the high altitude could make some more blood volume and help the pots

Interesting. This reminds me of the movie, Once upon a forest for some reason. Does anyone else find it remarkable that there are natural substances to control our issues--like perhaps these substances were in our ancestors diets due to their prevalence in the environment, and now we have migrated away from these areas and need to supplement them? Where i grew up, there was a remarkable amount of iron in our well water. I have always wondered if leaving this supplementation has led to some of my issues.

For me yes, my HR and blood pressure have been under control for about a month now, and i still get all of the other weirdo symptoms, including momentary chest pains and periodic shortness of breath--like i'm breathing through a straw. And lately, i have been exhausted. Like waking up from a night's sleep to go back to sleep.

does anyone know of a resource citing how many possibly have OH or pots?

Becca this disease can be so dynamic can't it. UGH! I am sorry that things are tough for you right now. I wish i knewof a doctor to send you to, but i am in WA May i ask, what the dr's think caused your lesions,and also what the loop recorder is showing? I haven't heard your story, but have you ever considered seeing dr. raj in Tennessee? You are so close. Plus, i think his background is in cardiology so he might have some extra insight for you.

since i haven't been feeling well, my teeth have also become thin, and my gum lines are receding. The thinning of the teeth makes me wonder about some type of calcium vitamin D problem because my hair is also falling out, and my nails are thinning and developing horizontal ridges.

This also happened to me. I was on metoplerol effectively for 6 months then it stopped working. Not only was it no longer controlling my tachy, it was making me bradycardic. This went on for about 2 months where my hr and bp were all over the place. I ended up stopping the beta blocker and switching to florinef. While I was withdrawing from the beta my hr really started to swing up to 180's. They put me in the hospital for 3 days while I withdrew

Not causing the pneumonia, causing the low temperature Are you really coughing up blood? If you are, do you think it is from your throat or your lungs? Have you been tested for Tb?

Kind of a side note from what is going on, but have you looked up the process of how anticholinergics work in relation to the ans, specifically ach receptors?

Yes, I found the info, and put it in my post. As per your temp issues. Are you sure your thermometer is accurate? Second, low temps make me think more hormonal/neurological not so much viral/bacterial but I do not know a lot about this. Not sure if 96.5 qualifies. Did you talk to your doc about this?

I wish I knew, it was done through a nebulizer in the office. I think that's what its called-- a little machine that you breathe through for like 5-10 min. Ok I found the info I think, they gave me *ipratropium bromide .02% inhalation solution *albuterol sulfate, 1ml nebulizer * albuterol inhaler 90 mcg *prednisone 20 mg oral * doxycycline 100 mg

Rich, I am so sorry, you must really be going through it. Stay positive if you can, and kick that pneumonia. When I get the chest stuff i use a vaporizer and I love it, it really helps break up the congestion, did your doc recommend you use one? Also, don't know if your sinuses are contributing, but when mine act up I dissolve 1/4 tsp each of salt and baking soda in 8 oz of water, pour it in my hand, and sniff it up my nose letting it drain through my mouth every six hours--kind of like a poor man's netipot-- sounds gross, but it works wonders for sinus drainage and doesn't have any stimulants/depressants that you get with a lot of the otc stuff, maybe your doc would agree? Also a tsp of honey is a natural way to aid against coughing, it helps kind of.The good news is that you know what is wrong (per se) and it is being treated. Hopefully you will be feeling better soon. One more thing, did you and your doc discuss a breathing treatment or steroids? I had pneumonia a few years ago and they gave me an antibiotic, a steroid pack, and a breathing treatment. Additionally, vit c via oj? I found when I had pneumonia that heat felt good on my chest. I used a heating pad, but dried beans/rice in a sock in the microwave til warm (around 30 seconds) would get some heat going for you. Also, yogurt can help restore some of the good bacteria in your digestive tract if you have issues after the antibiotic. Another question you might want to ask your doc is how he knows its bacterial( the usual response is a high wbc count, but he may cite your fever...)

Also, thanks to all for motivation and hope

I should also mention that I drove myself somewhere alone today for the first time in months.

I actually started smoking after I got pots. I honestly thought I had some weird disease that I was going to die from and thought I had nothing to lose. Sometimes I wonder if it kept me functional for longer. It did give me the extra energy I was missing. I first realized something was wrong in 2007 and I remember the tachy, chest pain, anxiety etc. Then I started smoking and it kind of went away, at least to a point of being functional for the next 4 years. During which time, I smoked. (I have no idea if this was because of the smoking or because of other unintentional compensations). Once I learned I had pots, after hitting a functional wall, I quit, and quitting made my symptoms better. Also, the stimulant from smoking became too much to handle and appeared to be contributing to adrenaline surges. As far as I am aware, I do not have autoimmune going on though.

Jangle, it depends. Not usually. When I am laying down it is in the 70's. When I am sitting and standing in the 80's. Rama is right though, there are still all the other weirdo symptoms with pots. But to me the most troubling/uncomfortable was the tachy and adrenaline surges. I still get lightheaded from time to time when I am up and moving around but it is momentary and tends to resolve almost as quickly as it began. I think there are multiple reasons I am feeling better. First, I think I am on a good medication cocktail for my body. Second, I am anal about my pots lifestyle choices as far as water, diet, using compression when needed and exercise are concerned. However, I think the thing that has made the greatest difference is my own state of mind. I am staying calm if something happens rather than panicking. This took a lot of practice and time to see results from and no therapist, pain killers, high levels of ssri, or ativan could control this for me--however, I do believe that the celexa I take has helped me overcome this.

Hey all. Since I have had pots, I have tried to stay as active as possible. In the past 2-3 months I have been slowly increasing this activity. This has done wonders for me, and my tachycardia is almost gone. I haven't hit over 100 inappropriately for the past month. However, I am more fatigued, which is kind of a nice change to being wound up on adrenaline all the time. So more fatigue, less tachy. I prefer the fatigue, so I would call this a success

Jen whatever you do, please be careful. I was a cna while I was going to school for nursing. There was a man there with a catheter who got an infection that no one knew about. I was the one who found him in septic shock...not pretty. And I'm not trying to gross anyone out here but when we took out his catheter, it was followed by a stream of blood that we couldn't get to stop. Really opened my eyes up to the negative aspects of catheters.

haha raised sodium concentration sets it off...nice. I am also interested in this NDP..

Since i have had pots, i have had an incredibly tough time focusing on anything. Even simple to understand concepts such as t.v. are sometimes hard to concentrate on and derive any meaning from. I am trying to pick up the pieces that pots has made my life, and start up where i left off. One of these markers is finishing my degree. I have only 1/2 half of a quarter left which includes a math course. I have been dreading this math. I figure, if there is no way i can focus on t.v., how am i ever going to be able to do the complex reasoning and critical analysis consistent with math studies? So, i sat down to do my math today, and at first, it was like reading gibberish. I could not get the ideas, i could not conceptualize them. Then, somewhere about 1 hour in, i came back to find myself deeply enthralled in the subject. I realized that not only had i focused on something for more than an hour (hooray!) but also that i was actually learning and understanding the content. Also, during that time, there was no place for pots in my mind. It was almost meditative. Like my brain was entertained enough by the problem solving to stay conscious but i was zoned out enough to keep the symptoms of pots out of my awareness. I left and went to math land it's the best place i have been in almost 2 years. Plus i made progress on one of my big goals. Even more surprising, i feel like i really burned off some stress, and my pulse went down by the 15 bpm it has been up at all day, and is staying down.

i would say sleeping but i usually wake up from that exhausted

thanks for sharing! Sulfites, huh?

Rich, did you take the airborne and tylenol because you were already feeling bad and trying to avert the oncoming feelings, or are the airborne and tylenol causing your symptoms? Also, issie is right about tylenol. All it takes is a double dose of tylenol to cause organ failure. You just never hear about it because tylenol settles all of their claims out of court--according to a college chemistry professor i had who worked for the fda. However, i am on florinef and have been advised to only take tylenol and not ibuprofen or aspirin. Any medication you take can cause harm, so it is important to be prudent in their use, but if i need it, i need it. Tylenol helps my occasional killer headaches. Luckily, i haven't had any fevers yet.

hmm, this could be happening because of lack of oxygen in pots. Interesting..

jen, i always thought it was, it only happens when i wake up in the morning. Ruby, i posted a topic on Ach and sleep that might answer your sweating question. I too sweat upon waking, but it comes and goes in prevalence.