Hi all I am in Day 6 of this cycle been about a year since my last and I had almost forgot about this excruciating pain that strikes me down1 But my lil buddy showed up with a new friend this time I have had the worst ear pain imagineable this time I have never had this with the Ch ever has anyone had this? it is like I have a 2 ton woodpecker in there trying to get out the same time his 2 ton elephant brother is sitting on my head and the lil farmer is behind my eye with a cattle prod. I am also having strange vision things its more like seeing wavy lines out of my 1 eye never had this before either. the pain is always unbearable but with the ear it has been like a double whammy and I am at my wits end anyone know anything about this? Should I head to Er? I am going nuts my poor son is wearing out his shoes following me around as I pace (its kinds cute hes like my lil shadow) I just dont knwo what to do and I know I am ramblin but ouchie Im in pain!! sorry for any typos as I am doing the rocking thing as I type  anyone have any ideas about this ear pain? kinda like a knife stabbing my ear deep down into my jaw its crazy well everythign about these dam things is crazy but this is unreal!!! Thanks for reading this if you have so far
Alana >:( >:( :'(

I've had ear pain that accompanies an attack but nothing like you're describing, ouch! A really good rule of thumb is if you use the words"Never happened before" it's a good idea to run it past your doc. My guess is it's another offshoot from the CH but never like to guess in matters of the head!

Joe

You'd be better off heading to the nearest fire station and asking them if they'll let you use their oxygen through a non-rebreather mask at 15 liters per minute or higher.

The ER is next to worthless for our condition. By the time they get to you, it'll be gone and they'll think you're a drug-seeker.

I am one of the lucky unlucky ones I have an o2 concentrator in my house due to my mom is on 02 24/7 but it is not helping at all  I am able to deal with the head pain think we get used to it after so long but this Ear thing is about to get me down! it onlly happens during a Ch so I know it is realted to the headache cuase when the Head is ok the ear is fine to then I get a twinge in my ear and whammo m lil buddy is back and Im up pacing just dont knwo what to do for the ear??? :'(

I find it difficult to believe that an O2 concentrator can produce the volume of gas needed to kill an attack.

And yes, I often get inner ear pain during an attack. I describe it like someone had just shoved an icepick straight into my ear canal.

Quote:

I am also having strange vision things its more like seeing wavy lines out of my 1 eye never had this before either.

What you are describing here sounds to me like what is called a migrainous aura.  I get it about twice a month, it is nothing to be worried about. 

The 02 has Never killed one of my attacks. I use a tank and it is wide open with a mask does not help me the concentrator only goes to 6 ltrs p/h  but the tank I use wide pen and do not receive any help from that sometimes it will mildly ease it but has NEVEr killed an attack I wish! would be great if it did

The wavy lines are like when u see a mirage in the road from heat rising up off road  but it is doing it to everything I look at just on the one eye so if I keep hand over it its ok ...its just kinda strange.

alanap98 wrote on Apr 27^th, 2010 at 3:41pm:

The 02 has Never killed one of my attacks. I use a tank and it is wide open with a mask does not help me the concentrator only goes to 6 ltrs p/h  but the tank I use wide pen and do not receive any help from that sometimes it will mildly ease it but has NEVEr killed an attack I wish! would be great if it did

You don't mention what the flow rate is set at on the regulator, nor do you mention if you're using a non-rebreather mask.

Some people get no benefit until the flow rate hits 25 liters per minute.

I am not sure if we are having the same thing
but i 'll tell you in case you might find it helpful,I ve got this ear muscle spasm during ch along with this weird pain inside ear.
what i do is close nose and mouth and push the air in ears for few seconds.In release it gives a whistle and helps a bit with the pain.
the other one is i put pure alcohol(right word?i mean the medical one)in an ear swab and i put it with it in ear without getting too much inside and hurt the canal.
it gives a warm sense which reduces sometimes the pain,at least for a short time.
sorry for your pain,hope you find some relief soon.