November 13, 2013 at 9:55 pm #613Shangel01Participant
I’m a34 year old with eds. I have been having issues that seem to be getting worse. I started with a new doctor explains that when I lie down and lift my head up it feels like it could explode from pressure so bad it makes me want to vomit now I’m noticing them same problem when bending over. I went for a MRI but am unable to breath when lying flat and cloister phobic so ended up not getting the MRI and now he is telling me to hold off on it. My abdominal xray showed a back up of stool and gas pockets so he is now thinking that is to blame or the fact that I have chronic sinus issues. I mentioned pots to him but he sort of blew that off. I am also getting lower back aches and occasional numbness and tingling throughout my body and usaully
Ly when this starts up is when I will wake up feeling paralized. I fell like doctors just don’t know where to start with all my issues so instead they do nothing. I’m getting scared and not sure what to do nextNovember 20, 2013 at 3:00 pm #4610Dr. DianaKeymaster
Amazingly, you sound like one of us! Gastroparesis or delayed gastric emptying is very common with dysautonomia/EDS, as is neurogenic shock when lying on our backs (heart rate and blood pressure dive simultaneously and we become ‘paralyzed’. It is very frightening and has happened to me many times. It sure sounds like you have high intracranial pressure. Because lumbar punctures aren’t recommended for EDS patients (I’m assuming you’re hypermobile here!) a trial with Diamox to relieve the pressure can help diagnose it, as long as your head MRI shows no apparent abnormalities (brain tumor, pituitary tumor, etc). You may first want to have your electrolytes checked (your serum CO2 needs to be at 22 or above for Diamox to work). If you’re in the clear, a night-time dose of about 250mg (not the Sequels) should eliminate the headache/pressure feeling over-night! If so, then you can at least get rid of those assorted symptoms! I’m working on our gastroparesis/organ dysfunction now. Hang in, my friend.November 22, 2013 at 5:40 pm #4614BarbaraParticipant
I had this paralysis and problems laying down. When I first joined the forum I wrote a post about it, at:
Basically sleeping sitting up and wearing a Philadelphia collar and brace halped me recover from this.
(UK)November 22, 2013 at 7:36 pm #4617Dr. DianaKeymaster
Oh boy, do I remember the sleep paralysis problem! I was able to stop that by using Diamox. It’s probably the same basic mechanism that Barbara has used with the collar. Basically, it sounds like we were both lifting up our brains just a little bit. This may have taken off some pressure from our vagus nerves. I still prefer to sleep on my side, whenever possible. That is, if my shoulders hold up! 🙂November 25, 2013 at 8:44 pm #4626Shangel01Participant
I’m going back to the doctor tommorw is a MRI the only test that will show the inter cranial pressure and chairia malformati or will a cat scan show it. I am now having issues with hearing my heart pounding in my ears making me crazyNovember 27, 2013 at 6:59 pm #4629BarbaraParticipant
MRI is for best for seeing soft tissue, CT is best for bone, so MRI is the best at imaging the soft tissue areas that will show signs. I have to say that these signs are often dismissed on the radiology report. Here’s my MRI annotated with some of the things the radiologist should be looking for, it might be worth taking this in and asking them to specifically look for it.
These are signs, some quite subtle and easily missed, that show there’s a hinderence to cerebro spinal fluid (CSF) flow, both around the brain and, between the brain and the spinal column. This hinderence of the CSF flow leads to a build up of intracranial pressure, which could be what’s producing some of the symptoms you describe.
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