Rita

I have dealt with the memory loss as well. To the point of not remembering who I even saw some days, or repeating the same questions. My son calls me Dorie the little fish in Finding Nemo that always says hi my name is Dorie and then can't remember she already old you or who you are. This can be very bothersome sometimes and it used too scare me, although it did go and come mostly when I felt bad. My nero doc says this is absolutely normal because when we have these syncope episodes or pass out spells our brain shuts down, therefore it works kinda like a computer once you shut it down it may lose memory that was not already stored and sometimes it takes a while for the memory too come back that was already stored. I am not a doc of course ; however, this is how it was explained to me and it makes sense. I hope this gives you some releif. As far as the meds go I have taken oxygen and it really seems to help as far as focus , because it supplies your brain of oxygen as well. I am sorry you have to watch your daughter go through this, but think of it in the long run this will eventually make her a very strong individual. She will have already dealt with many complications in life as a child that when she becomes an adult she will already be a great decision maker and be able to deal with lifes ups and downs. Hang in there, Rita s

So great to hear your in your new place. I hope that everyone there is friendly and somewhat understandable. But if there not you can always complain to us about them........Ha Ha . I hope that you begining school is a great experience just make sure not too over do it and rest when neccessary, or any time you get a chance. Hope that the docs there are also very helpful. I should be going back to vady soon and I'll send a big hello for you. Things just won't be the same without you to room with even though I really didn't stay long. Good Luck, Rita s

Hi Morgan, I just wanted to let you know I can sympathise with your issues at hand. Ihave dealt with heart disease in my family for years now. My father and his mother. This is still often life threatning; however, the heart is a very knowledgeable subject. There are so many things that they can do to heal the heart know that it is absolutely amazing. Unfortunatelt our illness is not so easily understood at this time. Maybe someday things will change. For now just trust the doctors that are taking care of your spouse and remember to take care of yourself so that you can be there for him in his time of need. Let me know if there is any way that I can help And know that you will be in my family's thoughts and prayers. Take Care, Rita s

Nice to meet you under the circumstances. I have orthostatic intolerance and vasovagal syncope. I am also a mother of two, a little girl Kylee and a little boy Skyler. I hope that on this forum you get the chance to meet many new friends and learn more on your condition. Rita s

Sorry that not everyone can experience what we go through daily at least half a day one time. My spouse was not so sure anything was wrong with me either until one day he was at home and had to hold me up while I was shaking and fell out. It is very unfortunate it took something like this to make him a believer. Now he stands by my side in support of everything for me. When i feel bad he is the first to make sure i either get medical attention or maybe just some rest if it's not too bad. I hope that things will get better for you on terms of at least your family not being understanding!!!!!!!!!!!! Maybe you could just write your boyfriend a little letter and drop a few memo's on all of your problems printed by some of the forums on the net. No one should really ever have to go through this: however, life is not always so simple. I wish you the best and if you think a personnal letter from someone who experience what you deal with would help. My e-mail is yewtah2@tds.net Rita s

Congrats on your expected delivery!!!!!!!!!!!! I have had a baby recently and did really well through out delivery as well as through pregnancy. I only had trouble with my blood pressure the first trimester after that through the pregnancy it was like a whole new me again my blood pressure stayed under control on it,s own. I did have an epidurol ( may be spelled wrong please for give me ) as well as a strong does of antibiotics during delivery, however I was considered a possible high risk patient. Every thing went great though and now I have a wonderful and beautiful baby girl ( now 17 mnths old ). I did not start having more trouble with my blood pressure until I started to lose my pregnancy weight. Best wishes on what ever you decide ,bringing a new life in the world is a joy only a mother can understand!!!!!!!!!!!!!!!!!!!!!!!!

Hi everyone!!! Just wanted to ask a few questions maybe you guys can help! I have been to see a nero doc at vanderbilt today and he was really nice he is not part of the research department, but because I was having some much trouble with the vertigo/syncope my doc got me in to see him. After spending a week and a half in the bed taking my regular meds along with valum and steroids I am doing better. Oh I almost for got I also had to have a visit to the er and get fluids and some sort of drug to stop vertigo before my week and a half in bed. On another note what I am wondering is if anyone else ever experience shaking with their syncope events, and what this is from????? The nero doc wants to do a 24 hr eeg along with a sleep deprived eeg. I am not sure if he will actually find anything , however he feels that unless the eeg shows any avtivity I am on the right schedule of diagnosing my condition. I really don't see a week and a half in bed right on schedule. I do get to back in the research department in September though so I am really happy about this. YIPPPEEEEEE!!!!!!!!!!!!!!! It's just the wait I am afraid of... Any advice is really appreciated!!!!!!!!!!!!!!!!! Thanks for any help, Rita S

Hi Traci I also just had to visit the er and was fortunate that my primary care physician was on call so I did not have to explain my problems. Vertigo was my biggest issue , however the syncope would also occurr upon standing. I try my best to stay out of the hospital and only go if I have too. I do know the feeling you are talking about it makes me feel as if my whole body is tingling and or my blood is moving real slow through out my body. Heat will often make this worse and sometimes after eating a meal I have a blood pressure and heart rate monitor at home and alot of the time when I am feeling this way my heart rate will be low. Other than that I am not really sure what is going on. Try having the docs giving you a steroid dose pack this along with valum while everything was spinning has helped a lot. Best Wishes, Rita

Recently I was covering the internet on orthostatic intolerance you should really look up chronic fatique syndrome. There is a link between cfs and oi and the social security has just updated there records too make it easier to apply for disability. You may want to check and see if you also have a social security office near you sometimes they will even make house calls to help if you can not get out. They may be able to help you in more ways than one. As far as medical bills go sometimes they will provide you with medicaid despite your age considering you have enough of them. As with the rest of us with oi and cfs I'm sure having enough medical bills is not an isssue. Hope you can get some help make sure to start with the department of human services and or your social security office they will help to get you start asap. If you do not have these resources sometimes local health departments can help as well. Good Luck, Rita

I had been dealing with pots for a few years before I became pregnant with my second child. In regards to my pregnancy I was considered a high risk patient and did have to come of all my meds with the expection of my paxil. At the begining my problems were up and down I had several headaches and did suffer from my pots symptoms at times, however resting did help on these bad days and they could actually give a safe prescription med for my headaches. The great thing is after the first trimester my symptoms stopped completly. The doctors think this may have help with the fluid your body holds during pregnancy. I think now if I could afford it I would stay pregnant all the time just because of the grrrreat way you get to feel for that short few months. The docs at vanderbilt also feel that from recent questions of other pregnant patients they have had these same results. I would have to say go for maybe you too will also be releived from your symptoms a while. Besides that look what you have to gain the love of a child that is never ending. Best Wishes, Rita s

Sorry your feeling so bad I have hypoglocemia with my syncope/orthostatic intolerance as well. Ihave found that when checking your sugar levels there are actually times that you should do it for accurte results. I always check my before each meal anf then two hours after each meal. You should especially check it before bedtime. I also will have shakes, vision trouble, slurred speech , as well as see little fire flies. Next time you feel this way try having a coke and some peanut butter and crackers. Make sure you make your awn peanut butter and not the store bought ones already made, use saltine crackers. You can also use just plain white bread with your peanbutter, unfortunately you will still feel bad for a while but your mainly just sleep. Ask your doctor to do a three hour gluclose test this will help to determine if it is your sugar. And you can also have a seizure if your sure is to low, sometimes it is not neccessarily how low but how fast it drops. Hope you can get a little help from this!!!!!!!!!!!! Rita

Dizzygirl I am new and for give me for any errors that I might make. I suffered from mood swings really bad when I was first diagnosed with ncs, however they put me on paxil wich really helped me too cope and deal with this. It is hard having complications that never go away or no one seems too be able to help. Trying a few relaxation techniques like when you are getting angry stop and count to ten, or maybe just take a couple of slow deep breathes ( but only a couple you don't want to get dizzy, even though you are a dizzygirl ha! ha! ). This will often help things or maybe help others sometimes. Hope you get to feeling a little happier!!!! Rita

Melissa he had me too take the welbutrin for my next daily does instead of my paxil. So I really didn't just stop the paxil I just replaced it. He does admitt that he thinks I have an autonomic dysfunction, however my primary care physician thinks I have a little bit of a cerubellum problem ( not sure if I spelled this correctly ) and he wants the nero doc too rule out shy-drager. I would hope that we would definetly rule this out!!!!! I am not sure why but the nero doc does not want too do any nero test at this time. Instead he just wants too try around with my meds a little, however he may do some test if this change of meds does not help. I really hate to be a quinea pig but I am not sure what else too do. My primary care physician is going to go ahead and call for some test he has in mind. We'll just have too see how things turn out and what test the primary doc calls for.

Melissa you asked why I changed these meds to begin with. The nerologists wanted me too change them because paxil affects your serotonin levels and the welbutrin does not. Other than that I am not sure!

I am new to this forum. I am 26 years old and having been dealing with vasovagal syncope/ orthostatic intolerance for a little over 4 years now. I am recently taking florinef, midrodine, antivert ( when needed ), and welbutrin ( after taking paxil for over four years ). I am not sure if the vertigo is getting worse because of the change of paxil to welbutrin or if things are just getting really out of control again. I started having vertigo trouble before I changed meds, however that does not mean the change is not making it worse. I have been hospitalized for my condition in the past, but that has been a few years back. I was also sick at that time with bronchitus. Most of the time if I go to the hospital with my normal symptoms ( black outs, passing out, feeling shakey, muscle weakness, migraines, vertigo, etc... ) they send me home. I sometimes just get overwhelmed with the things going on. And having two children to top it off. One of which is too young too take care of herself. She is only 16 months old ( her name is Kylee ). The other one is nine ( his name is Skyler ). I am feeling guilty because I have been having vertigo so much here lately. And it makes me feel really tired. I also feel as though I am going too fall out at times most often when standing. I am not sure what to do the antivert is not helping too much right now. Anyone got any suggestions?