rje11

Which one are you being referred to? I called and talked to the folks in FL first and they seemed way overbooked, so I had my doc refer me to Rochester. It didn't take long for me to hear from them, but they said the waiting list was very long and it would be next year sometime before I got in. I got worse, though, and one of my docs called and I am pretty sure they bumped me up on the list, as my appts are in early Dec. now. So, I guess the answer is it depends on which location and lots of other stuff. Sorry I can't be of more help. Rje

Thanks for the information! I appreciate it!

I have a series of appointments at Mayo Clinic in Rochester coming up and would appreciate input. I will be having the autonomic testing (breathing, Tilt table, sweat test) and see a neurologist for my generalized dystonia. It has progressed to my respiratory system. I am concerned about how I am going to be able to handle things physically... My husband will push me in my wheelchair, but right now at home I get so worn out with hardly doing anything. I take at least one nap a day (usually have to dose with Valium and Benadryl for dystonia) and then go to bed at least by 9:00. My dystonia gets so bad that I spasm with every breath and just about every muscle in my body spasms. What will they do if I am unable to do the autonomic testing due to this? Under what circumstances would they change me from outpatient to inpatient? We are staying at Kahler Hotel, so I am not PLANNING on being an inpatient. The more fatigued I get, the worse the spasms are, though... Input appreciated! Thanks Rje

Yes, I have read that the OTC pulse oximeters have a +/- 2 accuracy rate. Even at that, I was pretty bad last night, though. I will just do the recordings and then let them go from there. Thanks for the link! rje

I have generalized dystonia, so I am always twitching and spasming. I have not yet been diagnosed with dysautonomia, though. Will have the testing for that at Mayo in a couple of weeks. Rje

I used the new oximeter last night and I am thinking (hoping) that it reads a bit lower than my other one. According to the summary report I only had a total of 24 Spo2 "events", but I was under 88% for 26.4 minutes total. The "basal" was 89.7. My pulse is always pretty low, possibly due to medications I take. The average pulse rate was 58.2. My GP told me to take some of the reports to Mayo with me, so I guess they can figure it out there. The low O2 sure could explain my fatigue and dystonia flares when I get up to use the bathroom at night, though.... THanks for the input! rje

Are low oxygen sats a symptom for any type of dysautonomia? I have a pulse oximeter and it has been running 89-92 with me just sitting here. It is lower when I am lying down than standing, also. I am going to record overnight and see how it does... Thanks, rje

Anyone here have respiratory dystonia? I have adult onset generalized dystonia that has recently progressed into my respiratory muscles. Has anyone here had experience with that? Thanks rje

Yeah, that is way too complicated to try to attempt at home. I know that I just need to let THEM do the testing and it will be what it will be. It is hard to wait, but I need to be a patient patient.... ;-) Thanks for all the information! rje

Wish I could help with that, but my doc is even discouraged, too. It is hard to regulate both ways at the same time...

That is very helpful to know that it would need to vary by 12 points. I am not sure how accurate my pulse oximeter is, but when i tried it at home mine only varied a couple of bpm... I would try the Valsalva thing at home but I am not sure how to know I am exerting 40mg pressure. Is it possible to do anything similar to that at home? Also, my bp may or may not fall under the OH label as sometimes it drops up to 30 points when I stand up but some times it doesn't.... Thanks bunches! rje

I take Coreg 40 mg, once a day, Lisinopril 10 mg, once a day, Losartan 50 mg once a day (and an extra one during the day if my systolic stays over 160), and Adalat ER 30 mg twice a day. I am not able to take a diuretic, as it throws my electrolyte balance all out whack. I also take a ton of other meds for various medical issues, so there is no telling what interactions I may be getting... Thanks rje

Yeah, my internal med doc is frustrated and told me we will just have to treat the highs as needed, on top of the four meds I already take for the blood pressure. I think my nighttime lowest one was 60's/30's but it is usually 70's and 80's/50's during the night. My oxygen sats are low, too, but I'm not sure how low they go. I just ordered a pulse oximeter with software so I can see what is going on. I have just a regular one and I know the sats go into the high 80's, but that is when I am awake. I am curious to see what is going on when I sleep. The last sleep study I had showed my apnea had improved but that was two years ago. I guess I need to finish my profile and list all of the stuff I have going on. That is pretty depressing, though, so I will put it off for a while longer. ;-) Thanks! Rje

Thanks for the information. We are a couple of hours from Vanderbilt, so I figure I might go there for follow up, depending on what they find. I go to UAB for my generalized dystonia and I had Deep Brain Stimulation surgery there, but if I start going to Vandy, then I would probably change to their neuro dept, too. I have a good internal med doc who is willing to do whatever he needs to to help me - I am very thankful for him. He is the one that suggested dysautonomia, in fact. Unfortunately, the type of dysautonomia my symptoms most "fit" into is Multiple System Atrophy. I will NOT self diagnose myself with that, though, and hope and pray that it is not that. I had read about it before but didn't want to do much research because I was not ready to face the fact that it might be that. My hubby read an article about it recently and said something to me about it and I admitted to him that I had thought about that. He does want to know - one way or the other - so here we go! ;-) Rje

Oh, this just gets more complicated as I seem to look into it. My bp actually drops when I stand up - it is just occasionally that I get the spikes like that. I am on four meds for high blood pressure already.

I have what my docs call labile blood pressure. Today it went from 183/115 (and a few times the diastolic went over 120) down to 108/70. During the night it drops into the 80's/50's and sometimes lower, so it is difficult to treat. Does this fit in with any type of dysautonomia? Thanks Rje

Thanks for the input! I am also scheduled to do the Valsalva Test (forced breathing), so maybe the Deep Breathing test is a new one. Supposedly a normal person's heart rate varies quite a bit 10-20 bpm from inspiration to expiration, but mine hardly varies at all. I have read that a high heart rate variability (within reason) is a good thing, while a low one is not so good. I am also having the Sweat tests, but I am not sure how they are going to do these, as I have generalized dystonia, which is an involuntary movement disorder and my body is rarely still. I guess they will figure that out when we get there, though. ;-) Thanks again! Rje

Did they consider the fact that it didn't change much a positive or negative finding? My problem is not a fast heart rate - it is one that hardly varies at all, which I think is a sign of cardiovagal function problems?

I am new to the forum and have not been diagnosed with dysautonomia yet. I have appointments at Mayo in Rochester in early December. I have been reading about the autonomic testing they do, with one of them being the deep breathing test. It seems very simple, as you just breathe in and out for 5 seconds each and record the heart rate. I bought a pulse oximeter a while back at the urging of two of my docs, so I have tried doing this test at home. My question is - do some folks REALLY have a wide variance in heart rate just in those five seconds of breathing in and out? My heart rate only varies by 2-3 bpm so I am assuming I am not doing it right or my oximeter is not sensitive enough. I have checked my bp with my Omron digital cuff at the same time and gotten the same heart rate, so I know it is accurate to a degree at least. I just find it hard to believe that some folks heart rate goes up and down like 10-20 bpm during this test? Am I misunderstanding it? I have lots of symptoms and issues but I don't want to list them right now - just wanted to ask this question. ;-) Thanks! Rje