Gracefulprincess

Does anyone on here have issues with dropping oxygen levels? My levels have been dropping for awhile now and my cardiologist wants me to see a pulmonologist because she thinks I might need supplemental oxygen. If anyone has gone through this, what did the pulmonologist say? Did you have to go through any tests? I found a doctor to go to that my local cardiologist recommended. I'm just waiting for medical records to be sent over so i can get scheduled. Thanks in advance for any advice!

Hey there! It's been a long time since I've posted anything here. October is Dysautonomia awareness month, so is anyone doing anything creative this year? I usually share facts and other info about Dysautonomia on my facebook, but I would love to hear what some of you are doing. It might give me some more ideas.

I just have a question for everyone... has anyone been to the Duke Pots Clinic or been seen at Wake Forest? I'm asking because my dr told me yesterday that if this new medicine we're trying for a week doesn't work, he will have to refer me to one of these places. So if you have been there, what was your experience like? How are the doctors and staff? Thanks in advance for your help! Becca

It's been forever since I've posted anything on here, but I'm leaving for Israel in a week and I'm looking for any tips or advice. It's a touring trip so I'm going to be doing A LOT of walking and the trip is 10 days (that's including the traveling part). I already know that this trip will push me beyond my physical limits. I'm going to be calling the airline ahead of time so I will have help at the airport and going through security. I have Neurocardiogenic Syncope, POTS, and along with Cerebral Palsy. So I will have my rolling walker with me to help get me through the airports. I'm going to have my cane packed in my suitcase. I'm arranging transport to help me to the gate. I'm going to be wearing compression socks for the flight, taking aspirin the days I fly, and will be getting up every couple hours during the main flight. My main concern is going through security. My friend will be going through security with me. But I have to wear AFOS (leg braces) that go in my shoes and they are really hard to take in and out. I can take off my shoes but I don't want them to take out the braces. They can put my shoes with the braces through screening if they want to but if they take them out it's going to take forever for me to put them back. Anyway so if anyone has suggestions for me for my trip and the airport please feel free to let me know. Thank you!

welcome to the group! I started getting sick in July 2003, I was working retail then. It took about a year to be diagnosed with Neurocardiogenic Syncope and then Pots... and I was still trying to work then but it was getting harder and harder. And then my employer was trying to find ways to fire me because of being sick. Finally in 2005 my health was going downhill and I ended up being admitted to the hospital and was told that I could no longer work and had to go on disability. I ended up being fired before I went on disability. I was in my late 20's. I wish I could work at home but I have so many days where I can barely do anything because of my other health conditions. So working from home isn't a option for me. Becca

Here's my experience with going through the process of disability, I was diagnosed with both Neurocardiogenic Syncope and POTS. I was referred to a cardiologist by a neurologist I was seeing for other health conditions. And once I saw the cardiologist, we went through all the testing to find out what was going on which took awhile. And then started different medicines to see what would help me. After about a year, the medicines weren't helping and I was in bad shape and had to be admitted to the hospital for a few days. And there, the doctor told me two things, one I couldn't drive anymore because it would be too dangerous and two I had to stop working and go on disability. So with that doctor's help and my cardiologist's help, I applied for disability. It was not easy and there was a lot of red tape to go through. We eventually had to get my Congressman involved to speed up the process. But I was approved. So my advice to you is to have patience because it could take awhile. I had a lot of help from my family, my mom was the one who helped contact my congressman. So if you haven't considered getting your Congressman or woman involved, I would seriously think about it. Just keep fighting till you get approved! I hope you will find the right people to help you through this. Becca

I have lost many dear friends along the way, and it does hurt but a lot of them didn't understand what was going on with me or had busy lives with their families and or careers. You find out who you true friends are when you're dealing with chronic illnesses. I've been blessed to have a few close friends stay with me and I know that they've got my back. And when some friends leaves, sometimes God bring new friends into your life. The friendships I have I cherish and are priceless to me.

trudi..I will send you a friend request. My name is Rebecca schwinabart. I found a dysautonomia support page on fb that is posting daily prompts and pics for this month that you can use for posts. And Vepa I would love to help you if you want, so feel free to message me and let me know more about it. Thanks

Hey Everyone.... in case you don't know October is Dysautonomia awareness month! I usually like to post different facts and information about dysautonomia on my Facebook every day or at least several times a week. I've been doing this for the last few years and I'm looking for new stuff to post. I don't want to keep posting the same things each year. So does anyone else do anything different? Or does anyone have a story or article they would like to share with me, that I could share? One year a friend on Instragram did a photo challenge for the month and she had a theme for each day and you could take a pic of something and write a post about it. Please share your ideas, any ideas will be welcomed! I think educating others and helping them be more aware of our conditions and also what we go through is very important. They may not be able to understand everything, but at least we can get the information out there for them. Thanks in advance. Oh and if you don't feel comfortable sharing your story on here but still would like for me to hear it you can message me.

I heard back from my cardiologist yesterday and he wants me to go back to the 5mg of Norvasc because of how low my blood pressure has been since we increased it. For now that's all I can do and just pray that the chest pain will give me a break for awhile. I wouldn't mind getting a second opinion from another cardiologist, but where I live it's so hard to find one that knows about Pots and understands it, at least some. And to find a dr who takes it seriously is so hard too. I don't want to go through that kind of stress right now. I see my regular doctor in October and I'll talk to him about it and hopefully he'll give me some options. I'm definitely not doing anything before my surgery next month.

Hello everyone! It's been a long time since I've been on the forum. I was wondering if anyone here is on Norvasc? Awhile ago my cardiologist put me on a small dose of it to keep my blood pressure stable and to also help with the chest pain I get. I was originally put on 5mg once a day and was doing okay with it. But this year the chest pain has gotten way out of control. The pain has been so bad that I end up curling up in a ball crying just waiting for it to go away and it usually takes about 30 mins or so for it to start to calm down. My dr ran more cardiac tests which came back normal. So he doesn't think the chest pain is cardiac related and wants my regular dr to run tests on me to rule out non cardiac conditions. I strongly disagree with him and think there's something that they are missing. So I asked if we could up my Norvasc a little bit to see if it would help with the chest pain before I have my other dr do anymore tests. Please keep in mind I'm getting ready to have shoulder surgery next month so I don't want to go through more testing before then. So he agreed to increase the Norvasc to 10mg. And I've been on the new dose to about 2 weeks now. The good thing it's helping with the chest pain but now my blood pressure is dropping too low and also staying low. It practically takes all day for my blood pressure to go to normal. I'm going to be contacting my dr to give him the update and see want he suggests we do. So has anyone else had this happen to them and was there anything that helped them??

I haven't been on the forum in awhile so I'm catching up on my reading. My neurologist put me on Clonzepam (.5mg twice a day) awhile ago. It's probably been a good 7 years or more. But I don't take it for my Pots, I'm on it for seizures and the tremors/ shakiness I get. And it does help the tremors from turning into a full blown seizure.

Wish it was closer to me and would of known about it sooner. I live in Shelby nc that's a couple hours away. I hope you have a great time!

Hey everyone, as some of you know October is dysautonomia awareness month. So I'm looking for some ideas to get awareness out there. Last year I posted facts about dysautonomia everyday on my Facebook and will probably do the same this year, but if you come across any articles or have some creative ideas let me know. Thanks!

I had one put in back in 2008 and left it in till 2011. It's a minor surgery and done under local anesthesia ( they don't put you to sleep). The thing to remember is that it just records your heart rate and doesn't treat anything. It's helpful if you're having heart rate issues and will give your doctor a better picture of what is going on hopefully. Once it's in, you usually go in for them to download the info that it collected once a month.

Hi Jennifer... I haven't been on the forum for awhile so I just saw this post. Back in late July/early August I was having the same type of pain in what I thought was my rib cage (the left side). I have had it before on and off..the best way to describe it was like the pain you get if you have a side cramp from walking or exercising but 100 times worse, and I didn't do anything that I knew of for it to happen. But anyway instead of it being on and off it was becoming more constant and more painful and I couldn't take it anymore so I gave in and went to urgent care. I had xrays and that Dr said I had chostochondritis and that it would heal on it's own. And the best thing for me was to rest and not over do it. Well I had just start PT for my shoulder and had to cancel the rest of my appointments because all of the exercises made the pain worse. So my orthopedic surgeon has told me now to avoid doing anything that would bring it on or make it worse till it resolves and then maybe we can start therapy and then do surgery on my shoulder but either way this chest wall pain has got to be resolved before I can do anything else. I'm not on any pain medicine. I just use heat or ice packs when I need it but it doesn't; offer much relief.

I'm hoping too that this is just a "down time" and that it will pass. And Kitt, I live in North Carolina but can't afford to travel to the Mayo Clinic. I was lucky enough to see Dr Grubb in 2008.

Thanks Katie for responding...I looked up and read about thoracic outlet syndrome and most of my symptoms don't fit . I've been told that I was born with spinal cord damage and had the spinal atrophy in my t spine. And also I had a car accident 6 years ago that caused more damage. My cardiologist was saying that since I'm having to use more effort and energy to move my legs for example when I'm walking or going up the stairs, that would cause my cardiovascular system to work harder. And it's already overworking due to the pots and ncs. And then add in the atrophy which means muscle is wasting away and your heart is a muscle. With all that going on that would easily put more strain on my heart. Up to this point my heart has been fine, structurally. He wants to play it safe and make sure it still is fine.

Hey I have a question for everyone. I have Neurocardiogenic Syncope (ncs), Pots, and also spinal atrophy in my T spine. I've been having a lot major issues with all of them lately, it seems like each of them are getting worse. I was at my cardiologist's office this week and he asked me if any of my other Dr's (mainly my neurologists) have told me that the spinal atrophy could be effecting my heart and putting more strain on it. He's concerned and is having me get an echo just to be on the safe side. So my question is does anyone else deal with all of this and if you do how are you dealing with it? The spinal atrophy is getting worse much faster then we originally thought. For the past few months I've been having more trouble with my walking and even moving my legs by myself. And it's gotten to the point that I can barely walk much or climb stairs without having chest pain or my heart rate soaring or being out of breath, or all of the above. I just want to know other's experiences.

I don't have EDS but have had several spinal taps before. Mine came back fine but afterwards I didn't stay on my back long enough, I still took it easy but not enough and got the spinal headache they warn you about. So my Dr had me on bed rest till I could go in for a blood patch. The blood patch worked thankfully but I had to be on bed rest for a few more days after that procedure. Just be careful.

I have a seizure specialist at Duke, so if let me know how it goes with this new md there Debbie. You can pm if you want.

And Sarah the dr list was the first thing I looked at and that dr is the only one in my area

Sorry about that.. I;m not trying to find bad things out about that dr, I'm considering going to see her but when I read her bio about her doing a lot of alternative medicine I have a lot of questions. So I'll rephrase my question this way... for anyone who has seen Dr Black in Charlotte (whether you have had a good or bad experience with her) please private message me. And if you are seeing a dr in the Charlotte area that knows a lot about pots you can private message me too. I'm opened to suggestions cause I really need help.

Hi everyone.... I'm still having major flare ups with my pots and ncs symptoms. I really need to find a dr in the Charlotte nc area to help me. I love my cardiologist but he doesn't know a lot about pots and is not taking me seriously right now. My Gp is great and I know that he will work with whoever I find. So has anyone seen Dr Laura Black? If you have what was your experience and would you recommend her? And are they any other dr's in my areas that know about pots? Any suggestions would help me..thanks!

Hi again... thanks for everyone's response. Back in 2008 I had a reveal loop recorder put me and we kept it in till 2011....I was getting heart rates as low as 35, and still getting random high heart rates. But my cardiologist who I think is great is very cautious so he was on the fence about putting a pacemaker in. And because I have neurological conditions that require me to get MRI's done he really didn't want to do it unless it's a last resort. So we decided to take out the loop recorder. Big trouble... I start to feel weak when my heart rate goes below 60, so when it's down in the 40's I can barely stand up and if my bp is high at the same time I start to feel sick. I'm sent another message to my dr's office yesterday and an still waiting to hear back. If I;m still like this tomorrow I'm calling.