ajw4790

Hi everyone! Thanks for all your input! I am still learning and glad to not be alone (but not that other people have to suffer as well!). I hope to figure it out at some point. Actually, today in class they taught us about something useful that I have to google now b/c I don't know much about it. I think it may be part of what they have been testing me for. Anyways thanks!!!

Hi! I am glad it started to feel better! I was just a little concerned on the just taking the Dilaudid that was prescribed for something else. Also, I am not sure is that often used for migraines etc. I guess I probaly just haven't heard of it! Anyways, just be careful taking meds not how they were prescribed, especially such a strong pain killer. Guess it just worries me! But glad it worked!!! Why no triptans? Just curious, if not supposed to use for some migraines? Good luck!!!

Yeah, I would suggest talking with your dr. and due to the low bp etc. you could probably try start to try to salt load. Try gatorade and other high salt content drinks. Eat a lot of high salt food like soup, frozen food, chinese type dishes etc. Also, just add a lot of salt to food. Remember to drink a lot of water too!

Hi again! I am glad it sounds like you got some help! I hope that one of these solutions will work!

Has he been diagnosed with a form of dysautonomia or other disorder? I know that there are some disorders with these symptoms although I can't come up with any names etc. right now. But, likely dependent on the diagnosis and cause of symptoms is what the meds would be based off of. The other thing would be if the dr. wanted to (b/c I am no dr.) try something for the salivation and supplement with eye drops etc. for the dry eyes? Also, the salivation is it due to any dental or orthodontal issues? Like braces, or malignment etc? Wish I could be of help, but I don't really know...

Hi! I don't know a whole lot, but they were talking about putting me on Neurontin for nerve pain and other neuropathy symptoms. But, if it is the cardio. symptoms that you are looking for meds for that won't likely help. With the bradycardia and possible need for pacemaker they likely don't want to try a lot of the cardiac meds as they may make things worse and not better, which is what a fair amount of the treatment is. They also likely don't want to mess with fluid balance, so that rules out some too. Sounds like it is hard to find the right thing... I wish I could help, but it sounds like the drs. have thought it over and tried different things. The only other thing would be to see if they would consult with a doctor that specializes in these issues, or see a different dr. for a new set of eyes on the case to see if there was anything that maybe wasn't thought of at first. Although it sounds like they have considered everything pretty well. Good luck!

Rachel, This is interesting, although I unfortunately don't have any words of wisdom, I had never heard of this before. So, there is always something to learn! It is very unfortunate that you have this problem, but at least they found out what was going on, and are trying to figure something out. Anyways, do you know a good place to find more info. on it, and what makes drs. suspect it etc? I know that for as long as I can remember I tend to have very unrefreshing sleep, and tend wake up out of it, with pain, more tired then went I went to bed etc. I have reported some of this to drs, but they always try to say it is b/c of anxiety (not turning my brain off to sleep- thoughts racing etc.) and not sleeping, or they thought maybe seizures at night etc. Now they are also considering restless legs syndrome as part of the cause. Good Luck! Sorry I couldn't be of help! Thanks!!!

Hi all! In looking over people's posts it looks like a lot of people are students or are in/going into the medical field like myself. So, I was curious what kind of jobs people have/had? I keep wondering how well I will do in my chosen profession after I get out of grad school. So, I was wondering how this aspect of dealing with dysautonomia has worked out for everyone? I know it is different for everyone, and a lot of other factors tie in (ie family etc.). But how has dysautonomia affected your education/career? So, I am in the beginning of my second year of grad school, and have two more years to go, and then hope to be able to work full time, if able... Already, been told that there will be some things I can't or shouldn't do... Wondering if the debt is worth it?! Thanks for any input!

Hang in there! Wishing you a speedy return home from your newest challenge!

I just saw that you have anemia listed... I think that you can also have whiter fingertips etc. if you are low in iron. Just a thought!

Yes, another one of those wonderful circulation issues popping up. But, if your hands hurt or you become worried, talk with your dr. Because it could always be Raynauds or something on top of the POTS. But, the change in colors is often due to a decrease in ambient temperature, or for some other reason of decreased circulation. Good Luck! And stay warm (but not too warm)!

Mrs. Burschman, No offense, but eww! Sorry, I am not a big meat person! But, that is actually very interesting though! RGT9191, Whoops, maybe I had misunderstood that some people thought that animal proteins increased their symptoms. As, far as protein goes for myself I am trying harder meat wise, mainly with chicken, and some lunchmeat ham. I am VERY picky! Also, I try to eat protein bars, and other soy things... I am trying to find new and interesting ways to get all the good stuff, without a lot of the bad. As far as the cardio. you should have seen his expression when I mentioned other proteins like soy, beans, and nuts. He looked at me like I was NUTS! He said you would have to eat a ton of that stuff to amount to meat. So... EAT MEAT! At least thats what I came away with! Thanks!

Hi All! Thanks for your responses! It is kinda funny because my question came after going to the nutritionist and she was wondering how long I would be on this diet and what changes could be made, because she seemed to think there maybe some long term consequences. I think she was thinking the increased salt, and increased meat (with it comes increased saturated fat intake). Since, being on the board I have seen where a lot of people appear to not eat much meat, due to that it makes their symptoms worse. I find this interesting because my cardio. said to make sure and get a ton of protein and gave me a really hard time because I didn't want to eat a lot of meat. He refered me out and explained me as uncooperative etc. to his change of diet plan. All, I did was say I would try the protein, but I would need to try and find soy and other proteins because I know I didn't want to eat a ton of meat. So, all of this has left me scratching my head on the whole eat meat or not issue? Later on I may need to see if I can find a nutritionist that is a little more familar with all of this because she was only used to trying to put people on a diet or decrease High BP. Thanks for your help!

Hi! Sounds like you may be starting to get some answers. That is good. I hope that the pneumonia and everything starts to resolve soon! It sounds like so much, especially all at once! Hope you get to feeling better soon!

Sorry to hear that! At least it is better to catch it early! Maybe with treatment you can even feel better, now that they know more of what is going on. It is nice to have someone in your family to call up and consult with! Wishing you the best of luck!

Both, more of the unbalanced feeling though...

How do they measure blood volume? Thanks!

Yeah, I can wake up very uncoordinated, not knowing where I am, and not able to walk very well. Also, can wake up with arms like a rag doll. I am not really able to control them very well, and they just fall to my side or lap. I am really off balance and weak. I think a lot of it is the meds... It can be fun!

That is very interesting! Kinda makes you wish all drs. were so observant and focused on details, and not just getting on to their next patient!

Does anything help these Florinef headaches, or you just have to put up with them? If so that is awful! They have talked about trying it with me, so I was curious if there was at least some help to get through the side effects? Sorry, I have no advice because I haven't tried it yet!

Welcome!!! I am new too!!! It sounds like you have been through a lot! Good luck with everything!!! Welcome! I know the board has helped me, hopefully if you ever need anything it can help you as well!

Yeah, I think it is more than difficult to understand. A lot due to that there are likely many causes/mechanisms that can manifest in numerous ways. So, i try to focus more on for myself what things bring on particular symptoms and work on it that way. Also, try just about everything under the sun, and see if it works or doesn't work. But, it is important to make educated decisions. Because, my drs. sometimes would want to start three new meds all at once etc. Which I definitly do not want to endure all at once! Good Luck!!!

Just curious... What makes drs. decide to do this test? They never mentioned it to me, and just wondering how routine it is, and does it make a difference with treatment? Thanks! Sorry I don't know anything about the test to give any of my own input/info!

Hi! I was wondering to what extent others with dysautonomia have sensory deficits? I was tested again yesterday, it has been getting worse for me recently. I have distal small fiber neuropathy, so it is mainly in my hands and feet. I have decreased sensation to temperature, fine touch, and sharp/pain. I actually didn't realize mine had gotten so bad. I have also been having nerve pain, mainly in my hands. So, I was curious if anyone else had experience with this, any clue on if we can reverse it or how? My dr. made it seem like I couldn't reverse it. I also have autonomic neuropathy and am not sure of the extent of that either for myself or in general. Fun times!

The best way to try to understand all of this is to read what is out there, and find a good dr. to help you out. They can help explain it to you. But, all of our symptoms are not the same. But, as said before it is caused by the autonomic nervous system not working correctly. So, it can be causing too much input, or not enough causing high or low BP. Most people probably have low bp. And for POTS the major thing is increased HR when go from sit to stand. It can be normal to have a "high" resting HR. What is high for her resting? Tachy? Or just not 60 or 70 bpm? Mine can be high resting too. Especially if you have caffine, depending on what you have ate, your body type, your physical condition/sedentary/athletic, if you are stressed, certain meds, or have been up and down (from sitting) a lot you can have a high resting HR. Good luck!