Raisin

Another thought just crossed my mind....if it were me, I would ask Dr. jaeger if it is safe for you to have a TTT with your current bloodwork results. Maybe this has already been considered? Just a thought... Also, I know you have experienced the "white coat anxiety" that I have mentioned in previous postings or at least understand it. A nurse named Chad sometimes helps Dr. jaeger and the first time I saw him (before Dr. Jaeger came in), I said I was embarrassed by the long list of symptoms I had. He said that just about everyone they see there has the long list and that I was "safe here". I remember that I had a long deep breath after he said that and I was so grateful and so much more at ease. I pray that your experience is a good one. If you want, I will come down there on Friday and sing you a song by the piano. Ha! Maybe a Monty Python "Always look on the Bright Side of Life" diddy.

Hi Sarah! I guess I am lucky because I get to see Dr. Jaeger every three months. He is very nice. The first time I saw him he seemed very "official" but I have gotten to k ow him better over about a year or so. My advice for your visit with him is to try your best to have your questions written out so that you don't forget anything. He is very thorough re testing. I also just saw Dr. Shields (neurologist) there and he was also thorough. Dr. jaeger explained to me that he investigates everything re the vascular area of Dysautonomia and your neurologist investigates the neurological side of it. Can you get an appt. with Dr. Shields set up as well? He tested me for things that other neurologists didn't think of and I feel that with the both of them, I am in good hands. The QSart test wasn't bad and just felt like mini shocks to me. In fact, Dr. jaeger laughed because he said it took them forever to try to get my big toe to sweat. Lol. Valsalva test is just a pain because you have to breathe against some pressure but it certainly wasn't terribly uncomfortable. The gal that usually runs these tests is named Narkeetah and she is very kind. The hemodynamics testing wasn't bad at all and you basically lay there while they do all the work. Because you are getting all this done in a short period of time and because you are currently not feeling well, I am assuming you will be very tired. Hang in there! Please try to get a consult with dr. Shields if possible. I am hoping this may provide you with a full range of information! By the way, there is shopping and a grand piano in that bldg. too as well as nice artwork!

This may be a silly question GJensen but have you ever gotten your cortisol levels checked? And/ or, have they tested you for supine vs standing norepinephrine?

I just thought I'd share that when I am feeling very very low and wanting to give up on finding the cause of my Dysautonomia, I think about my family and the family that hasn't even been born yet and that maybe, just maybe, what I am doing may provide some information, strength, hope to someone or someones on down the line. I feel that things are now beginning to become more clear to the medical profession re Dysautonomia in the research area and in general awareness and hopefully, in compassion. Hang on to the hope. I don't think it's a pipe dream that we will be seeing new medicines and treatments soon. I am sorry to hear that your son is not feeling well now either. I'm sure that opens a floodgate of emotions. You are certainly entitled to that. Hang in. And, you're right. You will find understanding here. We need to carry each other through the rough spots and try to throw out life rafts to one another sometimes. So, in my thoughts, know that I am throwing out a life raft to you today. I'm sure I will need one in the future too (who knows? It may be tomorrow! Lol ) .

I know this may also be in the tmi category but I had a test that showed incomplete emptying. Therefore, when I go, I stay there and wait and then go some more! Lol. Then, no more dribbles. Also, I try to go before I reach that point where I'm in a have to go NOW spot if you know what I mean. When you don't empty the bladder completely, it is easy to get ongoing infections. Just a thought...that may not be the case for you but I thought I'd throw my two cents in. I hope you feel better!

Just a side note or two...my pots doc said when estrogen drops, we don't hold on to fluids like we normally do which is why he said alot of the gals feel worse during that time o the month. Have the doctors told you to drink tons of liquids or salt load or any of the "normal" Pots type home things to do? One last thought....I have had quite a few moments where I am thinking..."oh oh, I'm dying". But, whalaaa! I haven't died and I just keep on going. I know that this may be scary, especially when you don't know why something is happening. Good news is your young and your chances of a darn good recovery are good! Hang in there! There is alot of support here.

I have definite pooling verified by testing and the midodrine I takes seems to help the nausea more than anything for me. Neurologist said to wear 30-40 compression socks and shape wear up to my Braline if I can't stand the full compression tights. I tried the shape wear but for some reason I felt worse that day. Part of it may be that I seem to have abdominal pain anyway so I couldn't stand having anything pressing. I figure I will try again when the weather cools a bit. I told the GI doc that I did t understand why the nausea if alot of blood is pooling there as I would figure more would be available to the stomach and intestines to utilize. He said that the blood pools in tissues in the wrong places and then less is available for the GI tract. Ahhhh! I seeee.....I said.

I am the only one around in Ohio I believe who is wishing Fall was here already as for two years, I have had much better days when Fall hits. Interestingly, it can still be kinda warm (which makes me feel worse all summer) but it seems that as soon as I feel a change in the wind and it bears a crispness to it, whaaalaaaa! I start I proving again. I can't wait! Lol.

What is interesting to me is how the bad times seem to surround major hormonal fluctuations as your body is obviously changing dramatically after a birth. Do you have a neurologist who is looking for the cause or a "Pots doc" whom specializes in pots? Although it is an arduous task, trying to get to the cause (as most of us are trying to do) is a good idea in my opinion as I feel if we can fix the underlying root of the problem, then hopefully the Dysautonomia roller coaster ride will slow down. Prayers.

Thank you diabeticgonewild. (love the name by the way). I will definitely ask when I see the neurologist the next time. I seem to be on the "see you in 3 months" wheel with all the docs so it will be a little bit but I do feel I need to advocate for retesting at some point as I feel it is better to be safe than sorry. Thank you for your wisdom.

I was choking on liquids mostly but off and on. Good days, bad days. But, it seems to have improved now. Never really sought a cause. I figured I would seek out more help if it became a more consistent issue. I do have to drink liquids after each bite of food to get it completely down the ol pipe. I sure hope you can get that fixed!

Prayers prayers prayers!

I really feel for you. I had a lovely bullmastiff who passed about a year ago and I still cry when I think of her loving spirit. We had great talks as well. We just got a Mastiff who came into our lives with a great underbite and I swear she works on comedy routines to spring on us daily. I think my bullmastiff helped us find her. I pray for healing of your heart. I know how difficult it is. God Bless you and God Bless Max.

Jon6945, that is very interesting what you said about autonomic neuropathy as that is what the neurologist mentioned when he saw me. I thought he meant small fiber neuropathy and I told him my skin biopsy was fine but he explained how it is the autonomic fibers that are messed up. But, he did not add that as a diagnosis as far as I know. I will see him again and now I feel good about having some more intelligent questions to ask. I have said before that I used to pride myself on my ability to learn and understand these things but now I can't seem to grasp as much anymore. I remember in college taking a psychopharmacology class and aceing it. Now, I can't even remember which is sympathetic and which is parasympathetic. Lol! Sorry to hear about your mess going on! We are all a bit of a mess, eh? God bless.

Hi Lisa! Welcome to the forum. Yes, I have had chronic nausea and my motility test came out ok. I think mine has to do with blood pooling in the wrong areas as the Midodrine that I take to help that also helps the nausea. Everyone is a bit different re symptoms, causes, etc., but we all seem to share the same struggle of dealing with Dysautonomia. Eating smaller meals also helps me and staying away from French fries (which I didn't do today and so now I am laying in bed nauseous lol) . I'm sure you will find good support here. Hang in there!

Thank you Psalm. I am sorry to hear what you and Natop have to contend with. I am glad that there are good people following up with you. It's weird, I have always felt like there is something hiding in my body and that if I am just patient , (which I am not lol) , it will show itself and then everyone will see it plain as day. Maybe alot of pots patients feel this way. I know that everything happens at the right time . I would be agreeable to a cat scan as I have bad abdominal pain anyway. Last time I had this type of pain, there was air in the lining of my intestines. They didn't know where that came from. Well, May God Bless us all!

Thanks Natops! That is great information. And you're right. It seems that when it comes to antibodies, there can be alot of bewilderment. I don't seem to have any other antibodies showing themselves either so if they are " tagging along" , then they haven't told us what they are tagging along with and I think I have had every test known to mankind at this point. I don't have my follow up for a few months but your information will help me to ask the right questions. Symptom wise, I have Pots, hypovolemia, major blood pooling, small blood cell mass (?) , dizziness and weakness with leg ataxia after I am upright for awhile and two new things which are fatigue and joint pain in my hands and toes. I also have sicca symptoms so I am getting a lip biopsy for Sjogren's in Sept. I also have major abdominal pain but I attribute that to endometriosis or bowel issues. I am like everyone else here, full of fun! Thanks thanks thanks for your knowledge!

Sooooooooo glad to hear it! Glad you are doing well.

My new neurologist ran a paraneoplastic panel. Everything was 0 except Calcium Channel Type N antibodies showed up but were at the top of the normal range. I am wondering why they would show up at all and should I just "let it go" because they are in the normal range or should I advocate for future retesting to make sure they stay in the normal range? I am not freaking out about it. It just peaks my curiosity because so far all "causes" seem to remain a mystery in my case. Thank you for being there everyone!

Tried to quote Blue's comment regarding menopausal levels but I didn't do it right. Ha! 2 comments....one, my Vit D was very low and so I have supplemented up to normal levels now. Unfortunately, I can't tell a difference in symptoms. I also was told I was menopausal (FSH over 100) but had only missed one month and I was unable to eat that month so I may be able to blame the missed one (if tmi, sorry) on that. Then, about 3 months later, retested and the level was 5 which is completely non menopausal and not even premenopausal. I have no idea what that was but I agree that I think all levels of whatever can just go wonky. I always wanted to feel "special" but not like this. Lol!

Hello and welcome! I found that most of my cause type testing was and is being tested by my neurologist. So far no luck in a specific cause for me but I did get testing at Cleveland clinic also from dr. Jaeger regarding the vascular part of my Pots as well. (hypovolemia, blood pooling, etc.). It can be overwhelming IMO to try to understand and figure things out but the biggest problem for me was actually finding docs that are willing to invest in your case and keep on searching. I pray that you find a good team to assist you. And, there are lots of great tips on here too!

I can't help with this question but I just wanted to tell you I am feeling so happy that you are able to try this with Tyler. From everything that I have read, this does sound like this will be such a positive step for him in his treatment. I'm sure it will cause some initial anxiety but you will get through it. I think it is an excellent idea to have a home health nurse in the beginning. I know i learn much easier by watching someone else do something along side of me. Visual learner here.

Is this why (maybe no one else has this happen to them) everytime I see a neurologist or my vascular pots specialist, they always say 3-4 months for follow up? I feel like somehow it is written in my chart 3-4 in big red letters no matter if I am doing better or going downhill fast. Also, the exercise physiologist kept checking his computer (3 times) when I inquired if I am supposed to follow up with him. I kept wanting to ask what he was looking at. He said no follow up after looking at the computer and now I am thinking he was looking to see what insurance I have. Maybe I am paranoid....or just psychic. Lol!

Hi Goschi...I just saw pictures of something called livedo reticularis which looks "mosaic". Is this what your body looks like? It seems to be more related to circulation not getting to the surface of the skin rather than the blood pooling scenario. Just curious. Hope you are doing better!

I sure hope you get some answers Northerndarlene. I will have to look but my co2 I believe is usually high. I am also waiting for more results from CC. It seems like it is the little test details that point to something and I just pray that we all have docs that take interest into the details as well. God Bless.