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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Newbie to here, but not this condition. Please clarify:

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Coping › Newbie to here, but not this condition. Please clarify: › Reply To: Newbie to here, but not this condition. Please clarify:

December 29, 2012 at 7:15 pm #3272
Barbara
Participant

Hi Tom,
I’m not sure what your obstructed breathing is precisely but I’ll tell you my experience:-

Whenever I catch a cold and can’t breathe through my nose, I have terrible breathing problems on a night. I breathe in, then my throat seems to collapse shut, and it’s like I haven’t got the strength to push my throat open to breathe out, weird! That would make sense of your diaphragm theory – i.e. weak diaphragm muscle. Normally this is only prolific when I’m ‘mouth-breathing’.

However, something else I have come to realise happens, when I don’t have a cold, if my head ‘cantilevers’ forwards (like as if you were looking into a low cupboard) my throat easily collapses. To correct it, I have to pull my head back into a neutral position and it eases the problem. If I subsequently put my head too far back (so that it’s slightly in ‘extension’) this can cause swallowing (therefore aspiration) problems when I’m asleep and I wake up coughing.

I have to say here that I sleep sitting up (at 90 degrees) so my head (even with a Philadelphia collar on) can fall into these positions, once the muscles relax for sleep and the integrity of the neck is left up to the (naff) ligaments!

Most of my trouble seemed to happen at night (and I bore the consequences the next day – or the following days/weeks etc!). I too have looked into the acidosis type issues and have studied my urine PH several times for a week or so at a time. Typically, on a bad night, my morning urine PH was very acid, almost off the scale, in fact generally it was very low when I woke up, certainly NOT what it should have been – but then each day, as I got up and was moving about (and starting to feel better than I did) the result became normal.

I altered my diet to try and improve my urine PH but it didn’t really bring the improvements I would have expected. I would be interested in hearing your thoughts/experiences of acidosis.

My symptoms started suddenly, following a head and neck injury (having had a previously normal very active life) then progressed over months, to a state of disability. The injury had caused a ‘cranio-cervical instability’ (knocked my head loose!) which went untreated for 5 years! Now I have to wear a collar 24/7. I had an underlying very mild form of EDS/hypermobility, which I wasn’t aware of. I am wondering if those with a more severe form of EDS/hypermobility develop ‘cranio-cervical instability’ due to the fact that the head is only held on by ligaments.
Regards
Barbara
(UK)
—————————————————————————————————————-
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!

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