Wait Times for DX

[mehaller]

Just curious.  We all know about the diagnostic process of elimination sojourn imposed on what we ultimately learn is dysautonomia (maybe).  I had to wait 90 days after my primary and cardiologist got around to referring me to neurology.  My first - and only consult with VA/OHSU Neuro in Portland was in November 21.  A preliminary dx of dysautonomia and perhaps POTS was made, and autonomic tests were ordered.  I just had the test on Monday 16 May - two weeks earlier than initially scheduled.  And now I still have to wait until June 21 to get the results and a phone consult with my neurologist - whom I haven't heard from in months - in spite of my outreach.  To be fair, the dance macabre between the VA and OHSU ate the first month.  

Is this normal?  The QSWRT and tilt table and valsalva tests (and equipment) doesn't appear to be rocket surgery.  The tech/nurse did say that their work load is double due to long haul Covid demand.  But it was all of 90 minutes in the "lab" which wasn't much larger than my bedroom.  I don't get it.  My wife wants us to leave Oregon and move back to MN to be closer to Mayo.  I'm finding it hard to argue with her.  Especially since I'm getting much worse.  Took my first nose-dive last week - soft landing, but I was out.  My normal ten minutes upright is now closer to five, and the recovery time is closer to an hour - feet up and flexing.  Exercise tolerance is nil.  I get most of my exercise running to the loo - eight grams of salt per day and a gallon of water and all that.  

Back to the nose dive.  I have never done a full-on syncope.  I always have gotten plenty of warning in order to get low/horizontal.  This incident happened immediately after I lurched out of my chair to chase my DIL's cat off the kitchen counter (hey - it's how I was raised).  A minute later I too my dive on the way to my bed.  (I swear - the cat did it on purpose...).  So, was that a sympathetic or parasympathetic response?

Thoughts?

Floundering on the Southern Oregon Coast

[Pistol]

@mehaller - I have passed out many, many times, and in the beginning it was often without warning. You probably had little to no warning symptoms because you jumped up fast  that'll do it! 

1 hour ago, mehaller said:

So, was that a sympathetic or parasympathetic response?

In my case this type of scenario is usually caused by a sudden drop in BP causing the ANS to mistakenly respond with a dump of adrenaline. That causes all the blood vessels to constrict and the circulation to the brain to stop. TIMBER! I fall like a log. 

[MikeO]

1 hour ago, mehaller said:

Back to the nose dive.  I have never done a full-on syncope.  I always have gotten plenty of warning in order to get low/horizontal.  This incident happened immediately after I lurched out of my chair to chase my DIL's cat off the kitchen counter (hey - it's how I was raised).  A minute later I too my dive on the way to my bed.  (I swear - the cat did it on purpose...).  So, was that a sympathetic or parasympathetic response?

Meds do come into play. Not sure if you made any changes recently but i have not too long ago gone thru this. Changed to Carvelol went well, added amlodipine this did take a bit to kick in and the presyncope started in the Ranolazine and i went full syncope again. I am sure it took me a bit to adjust to the meds and was able to rechallenge the amlodipine after getting my hydration strategy worked out and yes it makes a diff but is a bit of work on my part.

All i can say is you are lucky to be able to get any autonomic tests at all. We can not get these or should i say no Dr's are available to interpret them.

Best of luck      

[MikeO]

13 minutes ago, Pistol said:

TIMBER! I fall like a log. 

I can so relate to this.... 

[RecipeForDisaster]

I’ve been sick for over a decade. I’m not totally diagnosed or treated yet. Most tests and specialist referrals are scheduled a year out (this has been since the beginning, well before COVID) and it’s in Boston, so I’m not sure moving would help you that much. It stinks, but there are not too many autonomic labs or specialists. 
 

Cats have made me pass out, too. 

[MikeO]

12 minutes ago, RecipeForDisaster said:

Cats have made me pass out, too. 

Make a note not to get near me while i am working under the Camaro. I usually sound like a Cat coughing up a fur ball. 

[RecipeForDisaster]

30 minutes ago, MikeO said:

Make a note not to get near me while i am working under the Camaro. I usually sound like a Cat coughing up a fur ball. 

Haha! I love my cats, but they seem to challenge me on purpose. 

[mehaller]

I reached out to OHSU to find out the status of my tests - taken on May 16, "nope, she hasn't gotten to yours yet, might be another month".  Yikes!  This is the best Oregon has to offer?  So, tests recommended at the end of November, took until mid May to test, and it'll be July before I hear anything.  

Trying to find a bright side here.  Oh, I know.  The best part of Dysautonomia is that when I get angry, I almost pass out so nobody has to listen to me bixxh about it.  Kinda hard to do stand-up when you can't stand up..?  I did a stand-up routine at a Dysautonomia Convention - I had 'm rolling in the aisles.  

 

[RecipeForDisaster]

6 minutes ago, DysautonmiaMatt said:

Sorry to hear your frustrations and suffering. One good thing that came out of Covid is more tele-health options which are great for people like us especially when flared up.  Svetlana Blitshteyn, MD is in NY but offers tele-health per her website. I am considering contacting her to setup an appointment. 

One thing that was helping me hugely but not with my current flare up is upper cervical chiropractic. These are specialized chiros that deal with Atlas alignment.  I recently moved and regret the new local chiro is not as good as the one I had in South FL.  After they did x-rays and exam my atlas was way out of alignment. I felt much better after the 1st adjustment. Dr Jonathan Chung in Royal Palm Beach FL who also is a functional neurologist was who I saw for 3 years. He told me most patients that faint no longer faint after getting atlas aligned. Down side it can take many adjustments until they hold for longer periods of time. He has treated lots of patients with dysautonomia/POTS.  Google "upper cervical spine chiropractor" to find one near you or contact Dr Chung or Dr Julie Hunt in Clearwater FL to see if they an recommend one near you.  IF your atlas is not aligned and you are adjusted you could feel better soon after.   Nice thing it does not involve drugs and is painless.

The other thing that Dr Chung had me do is vegus nerve stimulation using a micro-current device with ear clips.

Do you find the vagal nerve stimulation helpful? I thought it was lowering my HR and palpitations, but then I got worse and it didn’t keep up. Is it helpful for that or other stuff for you?

[RecipeForDisaster]

On 6/2/2022 at 7:57 PM, DysautonmiaMatt said:

It seems to calm me down and have fallen a sleep during it. Did you use a unit with Ear clips? I use a very low power setting so it is very gentle and use on left ear. Right ear has vegus branch that goes to heart so was told not to use that ear for safety. I try to use it for a couple of hours while watching TV but have not since I started Zoloft Monday which has been messing me up majorly with horrible anxiety and brain fog so far but lowering my BP and HR so much I have cut back on beta blocker.  Atlas adjustments have been most helpful up until now that I moved. I try to find things that are natural non-drug as possible to treat this condition.  For example before bed I take Gaba Calm Mind lozenges right when I get into bed. Have to take gabapentin and sometimes a bit of Xanax for my insomnia but the lozenges help me fall asleep fast. Gabapentin seems to help keep me asleep longer and somehow calms be the next day when not flared up.

Yes, I have an ear clip on my left ear. I’m already pretty calm, but my heart is not, without beta blockers. I used to use exclusively non-drug solutions, including for my other issues, but I’ve gotten so much worse that I can’t do without lots of drugs. I don’t even do okay ON the drugs(and sleep, ugh, that’s a huge problem). It’s a necessary evil, unfortunately. I am supposed to start IVIG, and I’m praying that will be my solution. I used many supplements and herbs before I got so much worse.

[mehaller]

Well, I just saw my tilt table study posted on my OHSU account.  Not POTS but dysautonomia but, and but, and the best part - continuous BP function failed after five minutes.. recommends retest.  And I still have to wait another ten days for my neurologist to tell me it'll take another six months for the same test....  

These guys are probably not going to get a positive review on Yelp.

[MikeO]

1 minute ago, mehaller said:

Not POTS but dysautonomia

Well this just shoot. To be honest not sure how one would get a dysautonomia diagnosis. I could see POTS or orthostatic hypotension or a subtype like neurogenic orthostatic hypotension but the term dysautonomia is just a blanket term. May want to look for a new specialist or demand a quicker turnaround for a re-test.  

[RecipeForDisaster]

1 hour ago, MikeO said:

Well this just shoot. To be honest not sure how one would get a dysautonomia diagnosis. I could see POTS or orthostatic hypotension or a subtype like neurogenic orthostatic hypotension but the term dysautonomia is just a blanket term. May want to look for a new specialist or demand a quicker turnaround for a re-test.  

I have that. They don’t really know what kind, although I do have HYCH (no one has ever heard of it). Mostly I have the label "idiopathic dysautomomia" and stuff like that. Autonomic neuropathy, and other fairly useless "diagnoses".

[MikeO]

52 minutes ago, RecipeForDisaster said:

I have that. They don’t really know what kind, although I do have HYCH (no one has ever heard of it). Mostly I have the label "idiopathic dysautomomia" and stuff like that. Autonomic neuropathy, and other fairly useless "diagnoses".

I do have the dysautonomia written on my chart from my PCP he does get it but NOT. I also at my last visit was tagged with neurogenic lumbar pain (what the fuge is that) Thanks to you i have figured out the neuropathy or nerve pain. It has helped.

Yes i agree i do have useless diagnoses as well. even my last two TTT tests were a cluster fudge with no clear diagnosis and a lot of passing the buck.

Have you made any progress with IVIG treatment?    

Best

Mike

[mehaller]

9 hours ago, MikeO said:

Well this just shoot. To be honest not sure how one would get a dysautonomia diagnosis. I could see POTS or orthostatic hypotension or a subtype like neurogenic orthostatic hypotension but the term dysautonomia is just a blanket term. May want to look for a new specialist or demand a quicker turnaround for a re-test.  

Demanding a quicker turn-around is probably a fantasy.  I'm caught between dueling beauracracies of the VA and OHSU.  There was sign of orthostatic hypotension, e.g. I dropped from 120/80 to 90/70 "with a corresponding rise in HR" which she did not define.  I allowed myself to get pixxed about all this early this evening and nearly passed out.  That's happened a couple times recently, e.g. when I get excited I crash pretty hard - a couple times into near-full-syncope (soft landings and brief blackouts).  I am assuming there's a SNS response hiding in there.  

[RecipeForDisaster]

11 hours ago, MikeO said:

I do have the dysautonomia written on my chart from my PCP he does get it but NOT. I also at my last visit was tagged with neurogenic lumbar pain (what the fuge is that) Thanks to you i have figured out the neuropathy or nerve pain. It has helped.

Yes i agree i do have useless diagnoses as well. even my last two TTT tests were a cluster fudge with no clear diagnosis and a lot of passing the buck.

Have you made any progress with IVIG treatment?    

Best

Mike

Yeah, and these labels change a little at each visit. I’m glad I could help a bit!

 

I definitely have something other than dysautonomia, HYCH, and SFN going on. Autoimmune problems, heart stuff, other things that don’t fit any of those. But if I don’t get into the NIH undiagnosed program, I don’t think anyone is going to figure those out at this point. I’m just hoping the IVIG accidentally fixes some of them. I have also had 2 TTTs and they were not too helpful - one inconclusive, one with the HYCH (I actually think this autonomic neurologist invented that diagnosis). My QSART was fine, which is weird with not sweating normally and having what I now see is severe SFN on biopsy.
 

It’s a very slow process. I think they just submitted the IVIG orders and authorization request last week! Then it might be denied and we’d have to go into appeals. I think I had the biopsy ordered in December. But heck, I’ve been sick for maybe 12 years, what’s another one…

[MikeO]

@RecipeForDisasterI hope your IVIG order is approved and it helps you out. Fingers crossed.

[MikeO]

4 hours ago, mehaller said:

Demanding a quicker turn-around is probably a fantasy.  I'm caught between dueling beauracracies of the VA and OHSU.  There was sign of orthostatic hypotension, e.g. I dropped from 120/80 to 90/70 "with a corresponding rise in HR" which she did not define.  I allowed myself to get pixxed about all this early this evening and nearly passed out.  That's happened a couple times recently, e.g. when I get excited I crash pretty hard - a couple times into near-full-syncope (soft landings and brief blackouts).  I am assuming there's a SNS response hiding in there.  

Makes sense being caught up with multiple providers. From the looks of your blood pressure drop and hint that the heart rate did rise and your symptoms i would agree with orthostatic hypotension. I am kinda a mixed bag with my diagnosis as my hr will rise at times and then other times only changes a few beats 

The near full syncope i am told is orthostatic induced syncope. I can give you hope that you can put a dent in the number of episodes that you get. Some of the orthostasis can be med induced so getting them adjusted right really helps. Keeping up with hydration is also key (not sure why us folks have to work at it so hard) but having good blood volume does help a lot. I drink 2-1/2 to 3 liters of fluid (that i can retain) a day.

Also listening to your body goes a long ways. @Pistolmight be able to explain that better.

I will guarantee you ANS is reacting to the drop in bp. the worst for me is when head is not getting enough blood i usually end up with a violent event (seizures) and injure myself   

[mehaller]

Here's the whole conclusion.

CONCLUSION
This is an abnormal study. There is evidence of adrenergic dysfunction with development of orthostatic hypotension. Mild reduction in sudomotor sweat response isolated to the proximal leg is very likely to be technical in nature, but if not, taken in combination with adrenergic dysfunction would raise suspicion for possible autonomic neuropathy or synucleinopathy. Cardiovagal function was preserved, and there is no evidence of POTS. PVCs were also seen. Clinical correlation is suggested.

 

ABnormal Study.  Reminds me of Eyegore in Young Frankenstein.  Was Frankenstein the first TTT?

 

[MikeO]

4 hours ago, mehaller said:

ABnormal Study.  Reminds me of Eyegore in Young Frankenstein.  Was Frankenstein the first TTT?

Sorry but i have to chuckle at this Lol

[mehaller]

Had my telechat with my neurologist the other day.  Starting midodrine at 2.5 mg twice per day.  I asked about this at my initial consult back in November.  Probably be two more weeks before I get my script from the VA.  Some beltway bandits got $10B to revamp the VAs digital platform.  Complete mess.  Tried to get the doc to send me a written scrip so I can just buy some.  Secure messaging system is down.  

Anyone remember how America puffed out its collective chest after the Soviet Union choked on its own corrupt bureaucracy?  

[MikeO]

13 hours ago, mehaller said:

Had my telechat with my neurologist the other day.  Starting midodrine at 2.5 mg twice per day.  I asked about this at my initial consult back in November.  Probably be two more weeks before I get my script from the VA.

Glad to hear that at least something is being tried. Hope it works for you. I would be curious how the midodrine works out for you.

I work with multiple health organizations so i get your frustration. 

[Sarah Tee]

@RecipeForDisaster, just wanted to say that I have heard of HYCH 🙂

Were you diagnosed by Dr Novak? I try to read everything he publishes, even though some of goes over my head. He seems to be the only person researching undifferentiated chronic OI. I suspect I have OCHOS, one of his discoveries.

[RecipeForDisaster]

2 hours ago, Sarah Tee said:

@RecipeForDisaster, just wanted to say that I have heard of HYCH 🙂

Were you diagnosed by Dr Novak? I try to read everything he publishes, even though some of goes over my head. He seems to be the only person researching undifferentiated chronic OI. I suspect I have OCHOS, one of his discoveries.

Yes. I don’t see a lot about it other than what he writes. It’s too bad it isn’t known by most anyone… 

 

I definitely have an autoimmune component, so I am now getting IVIG, which I qualified for because of the autoimmune small fiber neuropathy. So far, I don't think 3 treatments has helped my dysautonomia, but Dr. Novak said it might take a year.

[Sarah Tee]

23 minutes ago, RecipeForDisaster said:

Yes. I don’t see a lot about it other than what he writes. It’s too bad it isn’t known by most anyone… 

 

I definitely have an autoimmune component, so I am now getting IVIG, which I qualified for because of the autoimmune small fiber neuropathy. So far, I don't think 3 treatments has helped my dysautonomia, but Dr. Novak said it might take a year.

Oh, I really hope it does help eventually. Do you have have it at Dr Novak’s clinic, or can you have it at your local hospital if you are not near Brigham? I hope it’s not too gruelling to access.

I am still puddling away in Australia trying to get my basic saline infusions, which were ordered in February.