didgens Posted November 1, 2013 Share Posted November 1, 2013 I know on my sons affected side by his ear there is a little deformity. I also know he has a deformity in the bone structure of his feet, and his shoulder blade. is this structural ? if it is hypothalmus related why would it only be on one side. Are both sides affected ( as well as all people affected ) by what ever is going on but only the structurally different side is the side that reflects whats going on ?? am i making any sense here at all ?? Happy Friday Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 1, 2013 Share Posted November 1, 2013 It's not uncommon for CH'ers to go many years experiencing attacks on the one side, only to have their minds blown when the attacks suddenly switch to the other side (!!). Personally, CH attacks occur on my right side, but pretty much all other physical things wrong with me occur on my left side. So my $.02: I doubt there's a structural correlation in your son's case. Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted November 3, 2013 Share Posted November 3, 2013 My clusters hit on both sides. Usually on the right, but sometimes on the left. On the rare occasion, It'll be on both sides, even though the doctors say that doesn't happen. What do they know. MG Quote Link to comment Share on other sites More sharing options...
didgens Posted November 4, 2013 Author Share Posted November 4, 2013 apparently not much But even if the majority of them are on the same side, my inquiring mind wants to know why ? Quote Link to comment Share on other sites More sharing options...
didgens Posted November 4, 2013 Author Share Posted November 4, 2013 has anyone here (and maybe i should start a new topic on this one) undergone a sleep study ? Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 5, 2013 Share Posted November 5, 2013 sleep apnea is relatively common among people with CH. http://www.ncbi.nlm.nih.gov/pubmed/19272283 Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted November 6, 2013 Share Posted November 6, 2013 From what I know (not much), CH has nothing to do with sleep apnea. There are many cases of CHers getting sleep apnea equipment and it changes nothing. As for the one sided stuff... only just another "quirk" of CH. I have had it change sides at least 2 times in my past. Quote Link to comment Share on other sites More sharing options...
CHfather Posted November 6, 2013 Share Posted November 6, 2013 From what I know (not much), CH has nothing to do with sleep apnea. There are many cases of CHers getting sleep apnea equipment and it changes nothing. Well, there are some cases of CH patients treating sleep apnea and having symptoms reduced (see the citation in my previous post), but sleep apnea in itself can be a bad thing, and probably should be looked into for its own sake, even if treating it doesn't affect CH. In one study, 4 out of 5 people with CH (31 out of 39 randomly selected) were found to also have various degrees of sleep apnea (http://www.ncbi.nlm.nih.gov/pubmed/15186306). In the earlier paper, it says "The high incidence (80.64%) seen in this population suggests the cluster patient should receive a sleep evaluation and perhaps intervention with continuous positive airway pressure (CPAP) or an appropriate dental device." That's why I posted this in response to didgens' question. Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted November 7, 2013 Share Posted November 7, 2013 Definitely agree with you CHF. Anything that helps... helps! Just commenting in terms of causality. Quote Link to comment Share on other sites More sharing options...
fireface Posted November 7, 2013 Share Posted November 7, 2013 Didgens ..... I went to a neurologist that specialized in sleep disorders thinking since most ch's were triggered within the first hour of sleep she may have some insight as to the cause. I did two sleep studies and had attacks both times while I was all hooked up. I was totally disappointed when the neurologist came back and basically just said I had a sleep disorder ... Like, no crap... I was in the middle of the worst cycle of my life and this lady said I had a sleep disorder and it was unrelated to ch. she didn't even have the raw data captured during the attack... Just a summary. So, I got the raw data and saw both times just as I was transitioning from stage 1 sleep to stage 2 the attacks started. So, it was obvious to me that whatever the hypothalamus does during that shut down period was causing a problem. I know all of this doesn't explain anything other than I did a sleep study and got nowhere with it. I felt like they were just trying to push a Cpap. I'm currently in remission and sleep fine. Also, most of my attacks are on the left side, but I have had attacks on the right side and a few times both sides at the same time... Horrendous ... I went to the ER that time. The both sides attack lasted for over two hours. My inquiring mind would like to know why, also. Quote Link to comment Share on other sites More sharing options...
didgens Posted November 7, 2013 Author Share Posted November 7, 2013 great info .. thanks all Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.