CPAP machine causes severe cranial pain

[HeyTinkerbell]

I have CM, possibly myesthenia gravis, and sleep apnea.  I've have had multiple sleep studies.  I can't take the pressure in my head when they put the CPAP machine on - it feels like someone is trying to expand my head like a balloon, and of course, my skull isn't going to "give".  The pain from the CPAP machine is extreme.   My neurologist can't explain why this is happening.  I feel like if no one understands the cause of the pain, it would be unwise to accept it until someone can explain to me why it's ok.  Why don't I get a new neurologist?  I'm working on it.  I have minimal control over who I see under my health care plan.  

You know how divers "clear" their head by holding their nose and gently blowing to release cranial pressure when going deep underwater?  I've never been able to do that.  My guess is that the extra brain volume limits my ability to clear like a normal person would, and could explain why the CPAP machine hurts a lot.  Maybe that's crazy but it's all I've got.

I'm very interested in whether anyone else here understands what I'm talking about with the cranial pain w/ CPAP and any information they can provide.

[HeyTinkerbell]

I ask my neuro to run a CINE MRI annually.  If I didn't mention it, she'd never run it.  She only does one of the brain, not the brain and spine.  The initial radiologist report done a few years ago was thorough, but since then they just do comparisons and report any differences.  The CINE MRI done recently shows no significant change in herniation, and similar to the last exam, there is a high signal CSF flow in the anterior spinal column at the foramen magnum, and low signal CSF flow in the posterior spinal column consistent with decreased flow.  The flow obstruction is considered mild.  Scattered foci of high T2/FLAIR signal likely represent chronic microvascular ischemic changes.

None of my docs have suggested verbally that I've had a stroke, but that's pretty much what microvascular ischemic changes are, right?  Mini-strokes?  The speech therapist seems to be applying the same treatments one would if they had a stroke and were having swallowing problems.  I'm wondering if maybe it doesn't matter whether it's from pressure on the brainstem or mini-stroke, the way to fix the swallowing problem is the same - to train my brain to find a different pathway to get the signal to my throat.  The brain is a fascinating organ indeed.

Getting oxygen to my brain seems fundamentally important too.  I am holding my breath a lot when I sleep - it wakes me up a lot.  Hopefully I can find out why the CPAP machine hurts so much, and I do intend to inquire about Perilymph Fistula as suggested by Flipper.

Finding a true Chiari specialist - I did a bunch of research on that a few years ago and see the groups in Colorado and NY being named as the top places the most often.  While of course I want to get good care, I'm also cognizant that there are so many people that are worse off than me, and that the top docs only take the toughest cases because they continue to strive to make names for themselves.  I'm not one of those (yet? thankfully).  I'm trying to work within the system, and am getting better at pushing the docs with statements like, "If you don't know why this is happening, please refer me to another doctor who does."  They don't seem to like it, but so far it seems to be effective.  Now that I have the swallowing problem, it's time to push harder, but it has to be done within  the rules of the new healthcare framework, whatever they are.

[selmaS]

   Hi....keep  in   mind  CM  is going  to  affect  us neurologically.....and  some  with  CM  also  develop  autonomic dysfunctions,.,.,.so  this  is  not  uncommon to  have  issues  with swallowing, and  breathing....but  we  must  get  to a Dr asap with issues  like  this .....but  you  need  a true  Chiari specialist that will  recognize  how  and  why  you  are  having  the synptoms  you  are.

  Chiari  symptoms  cycle  and  change....you  can be  plagued  with  the  same  symptoms  for  yrs  and  then one  day  develop  something  new....

Have  you  had  a CINE  MRI  to  check  for a CSF  obstruction?

  Not  all  neuro's  are  well informed  or  experienced  with Chiari  and related  conditions,,,,.this is why  I  stress to  find  a true Chiari specialist.

[HeyTinkerbell]

I agree with your comments, and also, I haven't been able to find any sleep apnea suffers who complain of head pressure problems from CPAP.  It's quite the opposite, actually, with most people wondering why on earth you have to have a prescription for a machine that isn't even strong enough to blow up a balloon.

CM-related problems - my latest problem has been with trouble swallowing, and that started about 6 months ago without warning, and it's continued daily since.  Every day in the evening as I got tired, I couldn't swallow saliva as one would normally do.  It was like someone had unplugged the swallowing mechanism...like if a microwave or tv was unplugged - it simply didn't work.  If I focused, I could then swallow, and if the swallow starts, it goes all the way through normally - nothing gets "stuck".  It only happens when I'm tired or as I first go to sleep (sometimes I'd start choking from not swallowing autonomically).

My neuro sent me to a speech therapist (ST) to see if they could work on strengthening my tongue to help with the swallowing process.  The ST identified tongue tremors, and I didn't realize it was so weak.  I think the exercises have helped a lot.  The ST encouraged me to use a mouth guard at night to help with TMJ (didn't know I had that either), and that has improved my oral weakness too.

Thankfully I don't suffer from headaches much.  I do have pain at the back and base of my head often, but I can tolerate it.  My neck, shoulders, and back muscles are always stiff, and massages only loosen the muscles for a few hours.  I have neuropathy in my hands and feet, and my feet always feel dead in the morning - it takes about 10 steps to get them to work.  The feet aren't asleep, they just don't feel like they're a part of me.  My neuro has offered no explanation for that.  My knees turn to jello sometimes, and I'm very careful going up/down stairs.  I had a single episode of ocular migraine that lasted about 20 minutes a few years ago, and that's how my CM was diagnosed in the first place.

All of these things seem like typical CM issues.  Not sure why at this point my neuro is trying to attribute them to something else (myasthenia gravis) when it's undeniable that I have CM (5-8mm herniation).

Thank you Selma for all you do for the CM community.  You are an angel.  I've watched your posts for years now, and while I don't comment often, it gives me great comfort just to know that you care and you're here.

[HeyTinkerbell]

I really appreciate this information.  Is there any way to positively diagnose it other than surgery?  I'm in my mid-40's and don't heal as well or as quickly as I used to, although putting it off won't help matters.  I have an ENT that I can call and pose this theory to and see what he thinks.

[selmaS]

   Hi  Tink,  I  have never  heard  of  anyone  else  in this forum  complain  of  this issue....flipper  may  have a  possible  cause....so  talk  to  your  Dr  about  it.

Do  you  have  any other Chiari  related  conditions?

[flipper336]

It sounds to me like you might be suffering from Perilymph Fistula. It is basically a abnormal connection in one or both of the small, thin membranes that separate the air filled middle ear and the fluid filled inner ear.

The increase in air pressure from the CPAP machine could be enough to give you the symptoms. If it is Perilymph Fistula or (PLF) you would need to see a ENT to fix the problem.