Do I have CH?

[sunjunkie80]

Hi Everyone! 

So in April I was diagnosed by a neurologist as having CH. I am starting to second guess this diagnosis..some symptoms fit with CH and others do not. I am 35 year old female, one sided hour long headaches (not a normal headache, these bad boys hurt) but I also have visual auras before headaches and I only have one headache per day every 5-6 days..Dont get me wrong, when I have them, they are awful but sometimes I am able to lay down and other ones make me crazy and I move, rock, swear and scream...I am so frustrated. I really want to know what I have so I can treat accordingly. I have oxygen set up at home and I heard that if you have a migraine, oxygen will do nothing for it. CH will respond to oxygen..Also, does anyone on here have  a combination of both migraines and CH? 

I have rule out the other TAC's based on my symptoms...The only other thing I am considering is possible hemicrania continua only because I have constant residual head pain even on my days off from the major headaches...

[CHfather]

There are people in the world who have some migraine symptoms and some CH symptoms.  http://www.ncbi.nlm.nih.gov/pubmed/17367596

There are studies that indicate that O2 will also sometimes help migraine: http://www.ncbi.nlm.nih.gov/pubmed/22560101

As we've discussed, HC is a reasonable diagnosis to pursue, easily tested with indomethacin.

[sunjunkie80]

Thanks again. I guess I am going to request an indomethacin test when I go for my follow up on May 23rd. I had what I thought was a CH tonight and I tried the O2 for the first time, no change in pain level so I am feeling unsure about CH being the diagnosis. Thanks again for all the info. I appreciate it. 

[CHfather]

Do you feel confident that you have the right O2 setup and are using it properly?

[sunjunkie80]

I think so. I found the O2 information on this website and taped up the nose holes, held it completely over my face and took in deep breaths so that I could see the bag moving in and out. Did I miss anything?

[spiny]

It sounds like you are off to a good start. I think one of the main things regarding O2 is to exhale completely with force so you can get plenty of O2 in there and get rid of the nitrogen ( I think that is the main one).

 

At the beginning you likely will hyperventilate which is good. Just breath out hard, breath in deep, and try to hold the O2 in your lungs for a moment before exhaling. Looking down at the floor also helps some.

 

Also, you must do your post hit time. After the pain is gone, stay on your O2, at a lower flow to facilitate normal breathing. Just relax for this part. This part is what helps to prevent the quick return of the pain.

[CHfather]

Ideally, you will empty your bag when you inhale and it will refill while you are holding the air in your lungs and then exhaling. It should refill fast enough that you don't need to wait for your next inhale.  You use the flow rate adjustment on your regulator to achieve this state -- a higher flow rate if you are having to wait for the bag to fill before you can inhale, a lower flow rate if the bag is filling more quickly than you are inhaling.  Since most people find, eventually, that a 15 lpm flow rate is too slow to refill the bag as needed, if you're using a flow rate much lower than 15 you might not yet be optimizing your O2 use.

[sunjunkie80]

Thanks for the great tips everyone! Luckily, I havent had to try to use the oxygen again...  Although I am stuck with this nasty overall residual pain that seems to stay until I am just starting to be pain free and then I get hit again. It is almost like the inside of my head gets bruised in the same location where the pain was when I had the actual headache. Is this a shadow or does it sound different?