joyce68

From what I have heard most people get turned down the first time. A lot have to get a lawyer to help with the process. Don't give up. Fight them. You have worked hard and paid your share, good luck. Joyce

I am a registered nurse, I had been a nurse for about 5 years when I was diagnosed. Looking back I had symptoms when I was younger and while in nursing school, but of course the family doctor just blamed stress. I would not recommend nursing for those with really severe symptoms of course, but I have days when I have to call in sick because I can't stand up, but then there are days when I can run my entire shift, I pretty well fall out for two days after I work two days in a row, but I manage. I 've now been a nurse for 10 years. A few years ago I tried to go back to get a degree in pharmacy, but the work load and stress of trying to work full time and go to school fulltime were just too much and I became more symptomatic, POTS, NMH. Now I am trying to start my own pet accessory business on the internet and at area craft shows. Like most of us I fight everday to keep a degree of normalcy, some days are better than others. My cardio is great he does the best he can with me and has never made me feel like I'm crazy, he was able to diagnose me as within basically the first visit. He knew it was an option for a dysautonomia, but ruled out other causes. My only advice is figure out what you really want to do and go for it. just remember you may not be able to work or carry as many credit hours as someone with a normal system, but you can survive and thrive. Blessed be Joyce oh and after I get my business off the ground I plan on going back for my masters in nursing and teaching the next generation of nurses.

The nausea has become a regular part of my life too. It has gotten worse for me over the past month. Now I've started throwing up. Sometimes the nasea isn't that bad when I start getting sick. I try to keep something to sip on with me at all times. I 've found CF coke and the new scooby doo graham crackers help with the nausea. the crackers disolve real easy in your mouth so you don't have to chew. I also take OTC zantac. good luck Joyce

I have had 3 opinions on my teeth. I hate that some of you are going through the same kind of thing, but I am so releived to know that I am not alone with this one. The last surgeon told me the damage was pretty definite just a matter of whether just a small part of my tongue or lips end up numb or whether I won't be able to feel my mouth at all. I am also afraid of the meds for the surgery and after having the dry socket last time, that was just miserable. I am on my way to the dentist (again) in just a few minutes to see if there are other options. I look like a chipmunk and can't close my teeth together. Not to mention I can't sleep because of the pain. tylenol and advil just don't help. thanks Joyce

I was just wondering if anyone else has a similar experience. I have impacted wisdom teeth that are wrapped around the nerves, so that they can not be removed without causing permanent nerve damage to my face. It all started with the jaw pain about a year ago, I had one of the teeth in front of one of them removed because it was killing that tooth last March, formed a dry socket and was in terrible pain for almost two months. The current bad POTS episode started about the same time. I was thinking that the constant irritation to the nerves from the teeth trying to shift could be causing the entire nervous system to be in high gear. I asked my cardio about it, he said it could be a possiblity but wasn't sure. Of course who would be, our bodies are so odd in there response to anything. I just was curious if anyone else has had a problem with their wisdom teeth or any teeth. Right now the right lower wisdom tooth is trying to break through the gum, and I am in terrible pain, so of course POTS symptoms are getting worse. Any input would be appreciated. thanks joyce

I am a nurse so I run all day long, 12 hour shifts . when I get home I feel like I have been run over by a train. I spend my days off just trying to recuperate so I can work my next shift. I sit down as often as I can to talk to my patients, so they think I am just great because I take the time to listen. All any of us can do is try our hardest and not give up on ourselves or each other. I just do a little at a time at home and pick my priorities. I did get a state disability car placard so that I can park closer at work and at stores. I still park farther away at work but in the visitor garage which is 1/2 mile closer than employee parking. some days I do great, others it is a miracle to make it to the bathroom without having to sit down. good luck joyce

I was started on the patch .1mg last fall along with an ssri and for about 6 weeks I did great, hr was normal, bp wasn't too low, was feeling like my oldself, then I refilled my prescription and the patch caused me to blister, my cardio changed me to the pill .1mg twice daily, never really seemed to get any better, been playing the add a med take away a med game for months now. last week tried .2mg patch, bad bad idea, so dizzy I could barely stand, heart racing out of control. doc had me come off patch and wean down with pills, off completely, hr all over the place, right now as I type I'm 135-155. just make sure your doc starts you low. hopefully you'll get where I was during that 6 week period and stay there. much luck and support joyce

I occasionally get the eye twitching, it will go months and not happen and then all of sudden it will do it a few times a day, pretty annoying when it happens, but I 've never heard of it being dangerous. good luck Joyce

I have a history of migraines, I will cycle through them where they will be bad for a while then I won't have them for months at a time,but when we tried florinef after about 4 days I got a migraine that lasted for 9 days straight, I will take my worse POTS symptoms over a killer migraine anytime. I too will not take florinef again. Joyce

I will have symptoms that I am hypovolemic but my legs will be swollen at the same time, I figure it has to do with losing fluid volume from the vascular system itself. It can take days for me to get balanced back out.Usually I notice the leg swelling worse after I have been sitting for long periods of time at work. This past weekend I was in charge and had to sit at the desk for two 12 hour shifts. So I do both at the same time, swell and have symptomatic hypovolemia, Joyce

I just got a call cancelling my appointment for April 7 for Dr Grubb, anyone know how he is doing?

I'm not going to take beta blockers again, my asthma is just too sensitive, I used an albuteral inhaler to counter act the lopressor, and the caffeine to get my rate back up, I was more than willing to risk more tachy as opposed to not being able to stand up with the bradycardia, I was also hundreds of miles away from any doctor with the slightest clue about dysautonomias. I called the office when I got back and my cardio was fine with what happened and agreed that I should not take anymore betas and wait and let me get over the stress and get some rest. Thank you all for you input, I might try some relaxing cd's of the ocean or something.

Just trying to see if anyone has any ideas for how to get me through bad episode, my grandmother passed away last week, and the stress of losing her, traveling back and forth to her funeral, the changes in weather between ohio and kentucky last week was a royal pain. 30-60 -30 again for temps. my heart rate has been 115 - 160 for two weeks now. I'm on zoloft and catapress to try and stop the POTS mechanism but it isn't working, while out of town tried taking lopressor to help break the rate at suggestion of my cardio, but all I did was have an asthma attack and brady down into the 20's so that I spent 20 minutes dry heaving and trying to drink mountain dew and hot chocolate to bring me back up. Just wondered in anyone has any suggestions on how to deal with stress, and heart rate. any input would greatly be appreciated. thanks Joyce

I wear two bracelets first says neurocardiogenic syncope see wallet card the second says dysautonomia, POTS fluids only, it depends on what my symptoms are like as to whether I wear both or just the POTS one. I keep my wallet card with my driver license. I make sure those I work with know who to call or where to look if I have trouble, I'm lucky that I'm a cardiac nurse and work with cardiac nurses, so they know how to get hold of my doc.

I am also intolerant of otc cold medications, I would think sudafed would make heart rate and dizziness much worse. RE: zoloft dose, I am a nurse and I have seen people on 150 mg daily. I started on 50 mg and it worked initially, but now my heartrate is back up and chest pain is back. Doc is increasing me to 100 mg today. Good luck with his treatment Joyce 68

I have mild asthma on top of POTS and I've noticed if there is a virus anywhere with in a mile of me it seems like I get it. I've been battlling upper respiratory infections since halloween. Of course the longer I'm sick the worse the POTS symptoms get. Good Luck to all of us Joyce68