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Yep, Potassium checked, routine U & Es showed low Ca(corrected calcium which is more accurate for those of us in chronic disease states/post thyroid surgery) and nil else, I was on 600mg Ca and doubled it and the Mg to two under drs advice to nil effect. Just spoke to Resp physician who said symbicort & spiriva can cause the leg pains (albeit unusual, but got that one down pat!)I have POTS anyway and ECG done shortly before the 24hr dose due, and getting worst arrhythmias at night.
So complex, so very, very complex. Thanks for the reply, I really appreciate any ideas. Bee
Seems there are some common associated conditions?? located near the collagen gene locus that’s affected??? or just correlation doesn’t equal causation??? I suspect there is a genetic problem with CYP6D2 (that’s for memory… ha ha… not so good at pres)the metabolism of some substances affected and adverse/strange drug reactions. It’s so very complex and we dont have any concrete research looking at the whole person with EDS. We are victims of sub-specialists who can only focus on one system… may be a gross generalization, but how I’m feeling (I have a dream… every capital has a center for connective tissue disorders, where the medics can spell Ehlers Danlos and know more about it than me!!! Lucky I like puzzles!!)
All the best with finding a good doctor. I’ve just found the most wonderful GP/PCP who is just amazing. Gives me hope. Hope you are all OK. Bee (::)
Hi and I have watched in past but have just had serious ADR to Spiriva (for chronic bronchitis & ??tracheomalacia). I’ve had tetany contractures of hands and feet, cramps up the fronts of my shins and calf muscles, arm pain +++ arrhythmias +++ and some other bizzare stuff that I now discover 0.01% of pepople taking have reported such things, but so unusual it’s not mentioned in the literature. A quick search and low and behold… there is lots of discussion on severe leg cramps and front of leg pains/bone pain etc. I had warned my husband that he might need to call an ambulance. Paradoxically it had made my chest worse after a couple of days so I’m on lots of prednisolone and I’m guessing you all know what that’s like.
So… yes, I defiantly will be reading when I feel able to take on board whats staring me in the face!
Just curious, this spiriva reaction would suggest that I’m hypersensitive to anticholinergic medications… could this be why I have such dreadful trouble with anesthetics??? Any one else suspect the have ADRs to things like atropine? Bee
Hi, I too have vit D def (19) and on 5 tablets/day (5000units). Makes me wonder if a lot doesn’t circle back to chronic ICP pressure issues. Compression leading to “pseudo tumor” like conditions. ? Neuro control of digestion, thyrois, parthyroid, ovaries, you name it, if central disregualtion occurring than it is possible that these effects are secondary to the underlying structural problems of connective tissue???
Interesting discussion, Thanks Bee
Thanks so much for your replies,
Firstly, I get a couple of types of headaches, the ones that come on overnight, go through periods when I wake at 2am with terrible headaches and have to get up and sit up till (I thought the codeine/paracetamol worked… may be it’s just being up that helps???)
No empty stella, but do remember note on 1st MRI in 97 that said I had UBO in hypothalamus, one side. No evidence of compression, but boy feels like it, I get the pulsing tinnitus, dizziness, nausea/gastroparesis.
Then I get these terrible migraine headache with projectile vomiting and visual disturbance/photo and phono phobia. These are behind eyes, usually R eye. These are defined episodes (can last days) and have to lie down, can’t stand with these… so could this be the hypotensive episodes? Have had LP in “status migraine” for a week and in hospital when told pressures not elevated, in fact, told they were “good, nice and low” …
I do have neck pain/stiffness/numb patch between my shoulders at base of neck (numb to light pressure, still feel deep pain but not touch), hands go numb, altered taste, feeling of huge lump on L of throat and very tired of it all. Most very grateful of your discussion. I really think there may be something in the idea of there being hyper and hypo tension alternating, sure makes sense, in a strange way, if I have leaks that serve to reduce the pressure, this may account for the lack of compressive changes on MRI, bloody hard to prove, but if I went the route of getting blood patches for CSF leaks, then I wonder if the ICP would go up & I would get the typical radiology findings start to show up??? SO very, very complex, but I read through the raised ICP symptoms and can totally relate. The neuro/endocrine would help explain a lot too. Thanks lots, Bee xx (:
That’s exactly what I’m suggesting, that CSF leak (and cerebral hypotension) and hydrocephalus both result in compression of the brain (particularly the brainstem) and whilst the mechanism is very different, there are clear ways in which EDS would prepisdpose us to both conditions. There is are conditions pituitary pseudotumor and pesudo cerebi where compression can lead to tumour like syndromes. I have occassional spikes in prolactin but usually normal but I still produce breast milk (since 24, didn’t have child til 36). On another endocrine front, I have thyroid nodules and cysts on ovaries… I’m really curious about the effect of brain compression and endocrine dysfunction… I wonder about lots of things, like if our brains are perceiving raised pressure (even in the case of cerebral hypotension and brain sagging into spine) then things like fluid dumping and to reduce ICP could be a possibility? Could the fevers and dysautonomia/episodes of strange neurological symptoms and hypoglycaemia I get be part of the picture of CNS response to CSF leak.
I also remeber reading about the hypothalamic pituitary axis and CFS/ME OOH-NOOH cycle… could it be a there is a physical route to fatigue via brain compression??
I have “UBO” (Unifentified Bright Objects) on T2 MRI scans. I wonder how common this is in people with EDS and neuro/endocrine problems. Bee
Another link on cerebral HYPOtension
CSF Leaks and Spontaneous Intracranial Hypotension | Serendip’s Exchange
Spontaneous Intracranial Hypotension (SIH) is a condition where a patient gets …See More