Lemons2lemonade

Just wondering

If anyone has time to look into this guy (the vagus nerve) I would highly recommend it. This nerve is strongly associated with syncope, heart rate, and blood pressure. When I took anatomy and physiology in college, my professor told us that syncope is caused solely by this nerve. Now whether or not it is a chicken or an egg in our condition is questionable. However, by knowing about its actions, for me at least, it has been helpful. Syncope may seem to us like the bane of our existence, but it is there for a very important reason, to maintain blood pressure, and sustain life. Our bodies are not new to this living game and next time you are frustrated, ask yourself, what would happen to me if I didn't faint or get the signal from my body to lie down when things are going haywire? The answer is brain damage or even death. It's easy for us to become very frustrated with our bodies, and feel like they have let us down but in reality our symptoms have saved our lives more than once. I try to remember that and it helps me. On a further note, I believe that we have more control over our autonomic nervous system then we might know or understand. In fact monks, have the ability to raise their temperature through the power of thought and meditation, and temperature is an autonomic function. And undeniably, this implies a psychological link to autonomic function. So with that in mind my next question to myself is, how can I control this? And my answer to myself was this: stay calm. Haha! Easier said than done right?! " okay brain you are telling me to stay calm when the room is spinning, my heart is flying and palpatating all over the place, death feels imminent, my blood pressure is all over the place, I hardly know who, what, where, or when I am, I feel like I am floating around half the time, my life as I once knew it is over and so are all of my hopes and dreams, I'm pouring sweat, and scared beyond belief? Yeah, sure, calm, right." It is hard, I mean for me at least, it takes all the will I have and I still haven't mastered it. But I ask myself this, what is having sadness, anxiety, neurosis, or depression going to do for me? Absolutely nothing, except possibly make it worse because stress will stimulate my vagus nerve and only increase my symptoms. There is no cure for this disease. And I have come as far as medication can take me. I don't have cancer, or a b12 deficiency, or lupus, or some underlying heart problem that no ekg, echo, or holter monitor can find. I have pots. And if this thing were going to kill me, it would have already. And if it is going to kill me, there isn't anything I can do about it that I havent already done. And if the time comes when things do get serious then I will either live or I won't period. In the mean time, I am going to enjoy my time here on this earth, whether I feel miserable or not. I realized this three weeks ago and my productivity has increased infinitely. Yesterday I stood for three hours without sitting down. Did it feel bad? Yes like torture. But I lived through it and actually did something and had a wonderful day. If I faint, I faint. If I die, I die. Either way, sitting at home doing nothing clearly isn't going to help me beat this thing so I gotta keep moving forward. Pots, you stink and i will never forgive you for finding your way into my body. But these are the cards I have been dealt and nothing can change that. It's what I do with the hand that has been given to me that matters. Gotta start making some lemonade. I truly hope that this helps someone out there. It is what I needed, and has made all of the difference for me.

I saw a sleep doctor yesterday who brought up a good point. He asked if the tingling began to occur after beiginning the florinef--which it did, because increasing your fluid volume like we do with salt and what not can cause nerve compression possibly resulting in tingling etc.

yeah, i understand the "asleep" feeling, i've had it before, but completely paralyzed?

The last couple of weeks i have been waking up startled and feeling faint. When i wake up my arms or legs are "asleep" with the pins and needles feeling. Last night i woke up and my hand was locked up, like i couldn't move it-- and it was asleep. Has this ever happened to anyone?

This has happened to me before, a few times and happened again just last night. It's ridiculous. It's like my body is waking me up to faint. I also feel short of breath when this happens. It makes me think of some type of sleep apnea.

Honestly, i have found that this salt loading really does work for increasing bp. I take 2 grams each day. One day, after hearing about what doctor goodman had been saying, i tripled the dose and took 6 grams instead. My bp usually runs in the 105/70 even before i got sick. Then that day, my bp was almost too high 130/100 and i was having really bad chest pains. But i also take .2mg of florinef. I want to reduce the florinef and increase the salt but am waiting until february when i can run this by dr. goodman.

Hi! I'm sorry to hear about your flare-up, never fun. I used to get chest pain really bad, but then after i had been taking florinef for awhile, it went away. Now i just get fleeting chest pains. One thing to note, is that i was put on midodrine for awhile, and while on it, the chest pain was unbearable--so now i just stick to the florinef.

Jackie, this sounds like you also, sister without rash. http://www.nejm.org/doi/full/10.1056/NEJM200003023420906

Okay I did some more research and here are the links. Very interesting! http://www.ncbi.nlm.nih.gov/m/pubmed/11371229/ Says that chicken pox stay in nervous system, and that people who get shingles can have something called posrherpetic neuralgia. It can feel like electic shocks (sound familiar?) And it can last from months to years. Wonder if this has anything to do with peripheral neuropathy?! Also, someone else has wondered this in correlation to free and oh! The link is here http://www.ncbi.nlm.nih.gov/m/pubmed/19520522/

Jackie, that is also strange that they both got it...

Jackie- it must be nice to a certain extent to have a dad who knows.so much about the human body! I feel like his is the problem with a lot of health care providers--no imagination, its nice that your dad is one who does entertain possibilities, we could use more like him. It's like todayvi had to explain to my doc why I wanted a liver panel done--because of the association I have recognized. I think that probably a lot of people who do have anxiety go into Dr.s offices and worry about the what its by asking for really wonky things. But at the same time you go to the mayo clinic, or vanderbilt, or Cleveland and they actually do entertain feasible ideas.

I get this too with the latent imagery. However, once I thought the whole room was orange for just a moment, it was weird. I blamed it on the methylprednisolone i was taking at the time--wonder now.if.it was the.pots...

Hi! It sounds like you are going through a really rough time right now . Have you ever thought of having a caregiver come in and help you out? They are pretty expensive, but if you were on disability I feel like maybe they would help out with this -I hate being alone and this is one of the main reasons I'm applying. As for the blood clots, that can be very scary and painful. I had flebitis in the hospital so I can only imagine what you must be going through. If it makes you feel any better, I have days like this too where I am sad and depressed. I get really upset about my circumstances. But it is very healthy to be upset and its important that you let those emotions out. I usually just cry for awhile and it really helps me feel better. Another thing I try to do is look at the glass 1/2 full which can be VERY challenging at times. But you would be amazed at what positive thoughts can do not only for your health but also your psyche. In the mean time, is there anyone around you who can be with you during this time-- don't be afraid to ask for help. And finding help isn't always easy. I had to move back by my parents to get it and even they at times are not very supportive. I read a quote.once that said you never know how strong you really are unless you have to be. That's how I feel about pots. I sometimes think to myself, " I can't do this anymore" but the truth is, I CAN, it is just very hard. And think of all of the people who just take their ans for granted?! I try to use my illness to instill appreciation in others. At least something positive can come from this god awful thing. Just keep your head up, you can do this!

I think if there were one there should be an iv fluid room like an oxygen bar for people with pots--then we would all be feeling our best while there

Thank you! I figure while I'm laid up I can at least hopefully learn something

Hi! I have so many questions for all of you! I am trying to pace myself! Has anyone on here ever had shingles before? Also what were your chickenpox like when you were young?-- caused by the same virus. What's interesting is that after you get over chicken pox, it lies dormant in your nerve cells and can reactivate for unknown reasons. I had shingles on my face when I was around 12. The doctor said it was not only abnormal in placement (most are on the waist but also in age because most people don't get it til they are older. I am told I had the chicken pox really bad though. Was wondering if anyone else had this or a rough case of the chicken pox?

Chaos, was it an ultrasound for something else or were they looking for it?

Fiona, that is so interesting about your pulse ox and np cuff, I do exactly the same thing. I think of it as my way of keeping my brain in check. It thinks I'm dying the pulse ox tells me I'm not. Does anyone else use these methods?

If he can't, call him back and ask who can. More than likely he just doesn't want to. I talked to my neuro about an emg after hearing that this might be caused by neuropathy. He said no, you don't have neuropathy. No, I don't have typical neuropathy. It's frustrating.

Hi! I was just wondering if any one else ever gets frightened by their symptoms. I feel goofy asking this and you would think that after a year of this I would be used to it by now, but still every time the presyncope comes on I am absolutely terrified (it takes every bit of will in me not to panic). I've never died before but I imagine that what we go through is very similar to the actual experience i.e losing blood pressure. Also, when you feel the syncope coming on do you try and fight it or just wait back and let it run its course? Can you die from this? Has anyone ever died from this??

I've found that it is difficult for people to understand too. I always tell them that our reality is defined by our perception and mine with pots is a lot different than theirs and it is real to me as the sky is blue.

This happens to me too! I've figured that its not so much a numbness for me as it is a lack of ability to feel thing around me that put pressure on my skin. Hence the floaty feeling. It sure is annoying though, and it freaks me out.

Thank you for posting this! I am getting a colonoscopy next week and was wondering the same thing

i've read some stuff on here about dr. goodman. Anyone who has seen him, what types of tests did he perform to diagnose you?