And from here?

[GasconAlex]

So after a TTT which had a +50 BPM and a bp which started at 134/77 and  maxed at 180/105 in testing (No drugs given in the testing - just the standard ttt, Valsalva's etc.) sent off to cardio for 24hr holter and 24hr bp testing.

These are mostly better with slightly elevated pulse in the day maxing at 133 BPM dropping to 68bpm at night with 51bpm min. They noticed no abrupt changes on standing (no surprise there it generally speeds up over a minute or so) and a few arrhythmias which don't worry me too much. They give much more detail than last years one which I had whilst hospitalized (so horizontal virtually all the time) and on beta blockers.

For the pressure testing again no great surprises either with a fairly minimal report with a max systolic of 138 and a daytime average of 106/72 falling off to a night average of 86/53. They did notice a daytime drop to under 90 systolic, but said was not noted by me.

Neither really surprise me as pressures have doubled in 5 minutes before (or halved in 10 minutes) as the neurologist who did the ttt said the measurements fluctuated over a great range.

But what now? My PCP considers there is a neurological issue, which is causing these issues (with really strong headaches and muscle problems) but so far I haven't got a neurologist that's really following me. They say that it's not their specific area and pass me on. So at the last count I've seen 10 neurologists over the last 2 years which includes almost 6 months in hospitals, but no official diagnosis. (Other than the ear tumor and meningitis and leaking CSF fluid and my brain dropping into my ear cavity - all of which is considered fixed)

Because the cardio hasn't added to or subtracted from the ttt I still am no further forward. The cardio has passed the report on but not to the neurologist. Before I drag myself off to my long suffering PCP /gp any ideas of who I should be talking to?

Any thoughts are appreciated!

[Pistol]

I am so sorry for the troubles you are experiencing but my only thought is an autonomic specialist - even if that means travelling out of country. My sister lives in germany and had very bad POTS symptoms and even saw several specialists ( some on the dinet list of physicians ). She could not get any answers or treatment so she came all the way to the US to see an autonomic specialist and after the visit she was put on meds and now - she is well!!!! I am not implying you should travel to the US ( since there are several good autonomic specialists in Europe ) but you may have to look somewhere other than in your area ( or even in your country ). --- If anyone knows of a capable autonomic specialist in France please suggest. 

[GasconAlex]

@PistolThanks, the neurologist who did the ttt was purely an autonomic neurologist (specialized in MSA), she's really very good but.. she wants to be able to pass me to a more general neurologist to deal with on a day to day basis, the neurologist who ordered the test was only a Parkinson's specialist (I know, she knows, I don't have Parkinson's) so she's out. The other neurologists there I have seen are a headache specific neurologist, a sleep specialist, the ent neuro and an epilepsy neuro. These are all excellent neurologists but as yet they haven't fitted me in the right box!

The local hospital neurologists aren't top draw and I had a disagreement with the current head, which makes life difficult there. (It's not just me my PCP also has been a little short with him on the phone whilst I've been there) I'm also having increasing problems with vibration and the drive to my regional hospital is really tough. Last year I went for an MRI and after the trip and 45 minutes being in the MRI ended up being admitted as an emergency. No one in their right mind would insure me to go to the US - I looked up the costs of the operations I had in 2016 and got a ball park figure of 500,000$ .

Once I can speak to my PCP I was hoping that she can go directly back to the autonomic neurologist, but the system doesn't work exactly like that but perhaps she can bypass a few steps - sometimes it's possible.

I'd just like ideas on if there is any other stuff that might be good to do.

[sfthriller]

@Pistol  Do you know what doctor your sister went to?  I live in the US and have seen doctors all over (Stanford, Mayo Clinic Phoenix, POTS treatment Center Dallas).  Still suffering everyday, it's been 6.5 years with POTS. 

[Weary]

Could the ear tumor and related have damaged  the cranial nerves? I feel like that's what started mine- was after recurrent virus (i think either zoster or simplex 1) that seemed to mess with my cranial nerves.

[GasconAlex]

@Weary It could be. I'm trying to organise a consultation with the ENT who first operated, the last ENT specialist I didn't get on with as he is one of the two best (in skull base) in the country - he knew it and felt everyone else should know it too. It's a bit complicated but I am trying to arrange it. The tumor did screw up most of the left side cranial nerves.

I am pretty sure that I probably had issues with dysautonomic dysfunction before but held it all together so was not diagnosed. Now I think that it is getting worse and because of the other issues I cannot deal with the dysfunction.