Yes those symptoms sound so familiar. To get any diagnosis of sorts is a bonus because many sufferers go for years before some caring soul recognises that there is an actual problem. Like you, I thought my ‘post concussion’ diagnosis didn’t quite fit the bill (by a long chalk!) and got stuck into finding out what it really was. Luckily you, like Dr Diana, had the medical background and opportunities for research.
I have to say, I stopped taking the beta-blockers after only a month, I had to because they made my limb symptoms much worse. It was like they further restricted my already compromised circulation.
Regarding your symptoms, I have managed to address some of them:
Neuropathy – I had mild radiculopathy and small fibre neuropathy in my right leg, some of which I managed to resolve by using a tiny pedal machine when watching TV, strapping the bad leg in the stirrup and using the other leg to pedal. It took my bad leg around with it and gave it the exercise it needed. Also, I used the bad leg as the lead leg when pushing myself around the house backwards on a swivel chair (barmy! I know, but it got me about and it worked!) several months later it had all much improved.
Brain fog – still working on this
Horrible headaches and occiput/neck pain – this went almost overnight, when I was issued with a Philadelphia neck collar (tried lesser ones but they didn’t work)
Heart rate control was in the 160’s before beta blcokers – I manage mine by avoiding standing (especially standing with head down) basically operating as much as possible in a sitting position, for most everything I do (even sleeping). Any other task that elevated this, I try and delegate.
BP control problems – not easy but again, as you know, it’s down to the autonomic nervous system not responding properly to demands made on it, so best keeping demands to a minimum, do a little, rest a little, I alternate manual and sedentary tasks to try and manage the demand, so that I’m not ‘sat idling’ so to speak but, having suffered this for 12 years, you probably know all this already!
Very bad GI symptoms – I have found the Zantac (Ranitidine) that Dr Diana suggests, helps with these.
Joint pain – still working on this. Glucosamine Sulphate (one of the components of synovial fluid) helped me years ago with a bad back, thinking of going back onto this.
Blurry vision – I noticed that mine was worsened within a short while of eating sweet things (I think it might have something to do with insulin release but I’m not sure). I’m not diabetic or anything.
Very poor sleep habits – this again was MUCH improved with the Philadelphia collar. More recently the use of Cetirizine (as suggested by Dr Diana) improved things even more, I don’t know why but now, not only am I sleeping longer but I’m actually sleeping deeper. I hadn’t had a dream for years but it’s now a regular occurrence. Just need to work on the occasional insomnia that I’ve had for quite some while now (the restless leg thing don’t help!)
You probably know much of this already but I’ve found that even if I glean just one thing that helps my condition, it all adds up to a more comfortable life eventually.
What did they give you to reduce the intracranial pressure ?
Have you had a head and neck MRI by any chance ?
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!