MamaTrain

Bren, I am so sorry your poor baby girl is having to go through this! It's terrible feeling and I know how much it scares me as a grown woman so I can imagine how children feel! Just keep searching for the answers and DO NOT GIVE UP OR GIVE IN! It took me 2 years for my diagnosis and I was told everything was stemming from some sort of anxiety. That's a bunch of BS that doctors say when they don't know what's wrong! Do the poor mans tilt table test and see what her numbers are. I would strongly suggest doing it right in the morning before she even gets out of bed if possible. That's when mine would be really bad and then late in afternoon it would ease up and almost appear normal. I still struggle a lot in the mornings with rapid heartrate and dizziness. I would also suggest giving your daughter something called Elderberry extract. It is an all natural very powerful anti-viral. They sell it in something called Sambucas Syrup (which tastes so good but it's expensive for how much you will use it) or you can just buy the liquid form of it in a small tincture bottle that comes with an eyedropper. I swear by this stuff as it kept me free from H1N1 when it was swarming around everywhere and if I do feel something coming on I just take it 3 times a day and within two days it's done and over with. It really is amazing stuff! Tell your daughter that she is not alone and there a ton of people who know just how she feels. Keep your head up....it's easier to see God that way! KC

Doc gave me a script for 5mg of PindoloI after TTT on Tuesday. I started reading up on BB again since I havent taken one since the beginning of this 2 years ago and it was not a good experience! My confustion comes from info found on MedicineNet.com. It says that the type of BB that Pindolol is gives it "intrisic sympathomimetic activtiy" or ISA and can actually mimic the effects of epinephrine and norepinephrine and raise blood pressure and heart rate. So tell me again why would I want to take it? You long timers need to fill me in! KC

Thank you Julie! I was very surprised by how much it went up and how it didn't do it real quick. I wonder if that means I'm getting "better"as it used to shoot up like the second I stood up when this all started 2 years ago. I am relieved to have competent care now and to have the "official" dx...however it did give me that sinking feeling later that day that now I cant blame it on anything else! Have a great weekend! KC

Thanks Ladybug! I did not know the shots could set us off or I would have asked for something different. I will say something next time!

Just a quick question. Do any of you react after having Novocaine shots? I have been feeling "odd" since I went to the dentist on Wednesday of last week! Trying to figure out if it's that or because I have been under the weather a bit. I'd love to hear your thoughts! KC

Hello! Got my TTT done yesterday. It was a good experience overall. I did not pass out and I wasnt worried about that at all. I was raised up about 20 mins after lying there getting hooked up and waiting for Dr. Arden to come in. They tilted me and initially I was like I dont think anything is happening but then I felt the wave coming and I told them I felt it coming and it came on real good too! I went from 72 to 147. I did not do it right away, it took like 10 or more minutes but when it came it didnt stop for a long time. I did not have a drop in B/P but it wasnt real high either. Finally after 40 mins she was like let's put her down and get her some fluids. I did have my legs and hands go numb. I had never had that before but I guess I can move around at home so maybe that's why I have never experienced that at home. It was very odd feeling cause I'm trying to stand but I can not feel my feet or my calves! LOL! She lifted up my pants and said that is what POTS legs look like to the nurse whom she was trying to educate on autonomic disorders. I cant say I am "happy" about it but I am relieved that it did show something. Now we go to a new treatment plan of taking a very low dose beta blocker and the usual fluids, salt, compression hose and so on. Well, that's my TTT story and I'm sticking to it! KC

Hi kcmom! I'm so sorry to hear your son is going through this. It's tough enough to deal with let alone feel like that. And you must feel terrible when he's going through it...I know we Mom's tend to take things so deeply when they involve our children. I dont really get angry but I do notice that in some of my episodes I get to a point that I will just start crying and it makes me feel so much better when it's over. It's like I need to release some extra stuff or something. Keep faith that you guys are doing a great job! What has he been dx with? KC

Hi Yuliya! Welcome! You are good hands here at DINET. I am sorry to hear you have been a such a long path to finally get some answers. I think we have all been told it's anxiety or stress. If the medical professionals we saw could live in our bodies for 1 week they would be running to the ER! Way to go on dropping 100 pounds....that is amazing!! I am also having a tilt table test this week so we will have to compare notes. Hope you have a good Monday! KC

Thanks Sarah! The doc said a lot of her patients say they feel so great afterward because of all the saline! I hope I do too...I just dont want to have a few days of heck after the test where I would have to miss work!

I have been having a very odd few days so I have been taking my b/p & h/r several times and I just had a very small episode and went for a walk. I got home took them and it was 94/52 with 124 h/r. I often have numbers like that in the morning when I first wake up. I have not seen 120/80 in YEARS! LOL! If I'm over 100 I say a little "whoooohooooooo" KC

I'm set to have my tilt table test on Tuesday morning and I'm wondering if anyone can give me some insights to what transpires. I have been told they give you an IV but not sure exactly why. I figured the saline solution would be good after that but not sure if they give you any medications for what. I am not scared (actually excited to have someone taking me seriously) but I am one that likes to know what's going to happen. I have never passed completely out during any of my episodes so I'm not expecting to on the TT. Look forward to hearing your responses! Thanks! KC

Hi! I had these a lot in the beginning of my dysauto (2 years ago) but now I only get them during my "bad" week of the month which I believe to be the week before my period. I don't actually have a period so I am just assuming cause it's around the same time every month. Getting cold will set me off and I just HATE when it happens. I usually shake for about 10-20 mins and then I am exhausted afterward! I can feel them coming on because I wont be able to shake off the chill then I will feel very odd like light headed but I'm laying down and I will begin to shake. We have taken my blood sugar during these episodes and it is fine. I will ususally have a racing heart during them then it eases off when it's over. It's very strange and like I already said they are the thing that I hate the most about this whole stupid thing! Oh and I have noticed it only happens at night time. I wonder if it has anything to do with my poor adrenal glands. I need to have my cortisol checked again to see where I am at now. I love that there are other people out there who know what I am going through...thank you for being so willing to share your experiences! KC

Thanks for the responses! I think I will go ahead and purchase them and see if they make a difference. At this point I will do anything to get my legs warm!

Hey Everyone! The cardiologist wrote me a script for compression stockings and I was just wondering if there are better brands to buy or if a certain type are better. I think the thigh high ones would be most comfortable for me but I really dont know. Also when I went to look at them I didnt realize how many brands there was. Is there a better quality one? And if you have used them did they help you? My legs have been freaky cold all the time lately and I hope that will help with that too! Thanks for reading! KC

Just wanted to let any of you know who live in Oregon that I saw a doctor today at St. Vincents that totally knew what dysautonomia is and has been treating several people so far! I think her name must be getting out because I told her it's rare to find someone who knows about it. She studied a bit with Dr. Grubb too! I have the 24 heart monitor on right now, she scheduled a echo cardiogram and she is scheduling the tilt table test for as soon as we can get it on the books. Now that's what I'm talking about!! Thank you Dr. Arden!!! I will keep you posted on results! KC

I started noticing this about 6 months into my dysauto. I started charting and realized that I was much worse during this particular week. I don't have a period so it was hard for me to determine if it was the right before, the during or what! I actually would start planning around this week as I knew it would be **** if I tried to do anything fun during that time. I have heard this has to do with progesterone but I dont know as I have started taking progesterone and it has made me feel better so I'm not sure!

Hey there! Long time no posting! LOL! How have you been? I cant figure out how to get email notification that people have responded to your post. This new forum is a bit different. I have my MRI tomorrow morning and we are still trying to get an appt. with endo. They are very busy people! Gotta run boy to school. Chat with ya later! KC

That sounds like the test they were talking about! Was your test normal then? I dont know what those numbers mean.

Hi Sue! Is that the test where you have to be supervised by a doctor? I was wondering why I couldnt just go do a lab test and that's what they said. Made me a little anxious. How were your results?

I will definitely keep you posted! Thanks you! :-)

Hello Everyone! It's been quite some time since I've been on the forum. I think when it changed I had a hard time figuring out what happened to my subscription to new topics and what not then I just got busy and well you know the story! When I was last posting I started seeing a new doctor who was a MD and used naturpathic care in her practice. Very outside of the norm for around here! We were doing hormone replacement and adrenal supplements. I would say that I improved quite a bit but never got that sense of my "old" self.I still had bouts of dizziness, racing heart upon waking, hot & cold sensitivity, exercise intolerance etc. I was just happy that it wasnt happening 24/7 like it was. However in the the past week I have noticed my symptoms creeping up again more frequently during the day. I even started my uncontrollable shaking again at night when I get chilled from going from warm bed to bathroom. That is by far the symptom that I hate the most. I cant stand not being able to stop shaking when I keep telling myself to stop! UGH! Anyhoo, my husband and I went in for my check up and said things are just not getting better and we want to look into further testing. She was very understanding when we explained the shaking episodes and said let's look at your pituitary and hypothalamus with an MRI. I just found out that a aunt of mine had very similar symptoms and had a huge pituitary tumor! She also wants to see if a endocrinologist will do a special test where they test how your adrenal glands respond after injecting you with something. She thinks there is a possibility that one of my adrenal glands is dead or dying off. I'm willing to do anything to take this away but I know in my heart that I must be prepared for the infamous "everything looks normal". I hope all of you that I used to chat with regularly are doing well. Shoot me a note if you want! Have a good week ahead! Hugs, KC

I get this too right after I exercise. I also will be completely exhausted the next day so I am exercising very little these days!

Hey Cat, I dont have time to read all the other replies so I hope I'm not just repeating things but I am going through all this hormone replacement stuff and that is extremely low! Progesterone is the one that seems to have the best effect on me for the nervous system stuff as it is known as the calming hormone and when it's very low it will cause havoc on the nervous system. Hope you get the treatment you need should you choose that route! Definitely go bio-identical! :-) KC

I wonder if the acupressure would be better for me since the acupuncture was horrible! I couldn't understand it...everyone I knew that had it done just raved about how great they felt. I felt sooooooooooo terrible for hours after wards and now I wonder if the needles were just too much for me. Thanks for sharing that! KC

Wibble, 'This is also very familiar to me! It wasn't until I started taking adrenal support that I noticed a significant difference. Don't know why but that's how it happened! KC