HearPeers Heroes Mary Beth Posted April 14, 2016 HearPeers Heroes Report Share Posted April 14, 2016 Hello Ivana Cara Mia and Ivana Marinac 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kara of Canada Posted April 14, 2016 HearPeers Heroes Report Share Posted April 14, 2016 I had this issue too. Was at the one month mark till month three. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted April 14, 2016 HearPeers Heroes Report Share Posted April 14, 2016 Very interesting question, Mary Beth since I have just a few input about this problem; I got more inputs by talking with people than by theoretical observations from books. I would say this is a pretty complex problem which we could not unravel before because it has strong connections with our knowledge about migraines which is not quite clear. I have one PHD on my desk - I need to read it, Theoretically, if we take a basic description of a migraine as a condition of changed sensory inputs - I could imagine how this could work. I have read a paper which explain the link between unexplained otalgia and migraine attacks. Only recently, a new condition - vestibular migraine has been described. I don`t see why this wouldn`t be part of this - "casserole". But I would not limit this problem as exclusive condition of the users of cochlear implant. I have heard or read various statements of hearing aid users or bone-conduction implant users who experienced a sort of "hearing nausea" after been exposed to the certain hearing stimuluses which induced kind of fuzzy, over-reacted emotional reactions. Even I can testify a similar episode when I used a digital hearing aid which, obviously, did not suit me. Cara Mia and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted April 14, 2016 Author HearPeers Heroes Report Share Posted April 14, 2016 Good point Ivana. Something we should keep in mind, especially with children who may not be able to describe the sensations well. Thanks! Ivana Marinac 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted April 15, 2016 HearPeers Heroes Report Share Posted April 15, 2016 Especially we should pay attention to them and watch their reactions. Excellent detail - because all these factors we should understand the interdisplinarity of this field, many professionals who should work closely to understand the problem. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted April 15, 2016 HearPeers Heroes Report Share Posted April 15, 2016 From what I have read, as Ivana has stated, I don't think they can pinpoint one specific cause. Too many factors to really narrow it down. I have read some on otic migraines which can cause dizziness, vestibular migraines which can cause vertigo. Haven't really found anything that links CI's with these types of migraines. Still looking Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted April 15, 2016 Author HearPeers Heroes Report Share Posted April 15, 2016 Adam, Rene Gifford from Vany is presenting on it this week at the American Audiology conference in Phoenix. Maybe there will be a link to that talk at some point. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted April 16, 2016 HearPeers Heroes Report Share Posted April 16, 2016 From what I have read, as Ivana has stated, I don't think they can pinpoint one specific cause. Too many factors to really narrow it down. I have read some on otic migraines which can cause dizziness, vestibular migraines which can cause vertigo. Haven't really found anything that links CI's with these types of migraines. Still looking Actually, I would say that the direction of the perspective of looking at this problem is opposite: vertigo as a sensory deficiency could cause vestibular migraine because of altered inputs. But, let's see what the researchers will tell about it. Also, that's why I made a hypothesis that wrong map/input (hearing path) is a cause of these migraines not hearing implant or aid as itself. I would like to strip the veil of the technology as a cause of migraine or sort of demon of the situation. I have read a lot of stories of people who described all kinds of headaches but most often I have found lack of thoroughly conducted investigation of the cause of their disturbances which they focused into aids/implants. This should be demystified. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted April 16, 2016 HearPeers Heroes Report Share Posted April 16, 2016 Adam, Rene Gifford from Vany is presenting on it this week at the American Audiology conference in Phoenix. Maybe there will be a link to that talk at some point. Hope we'll get more written thoughts - I have tried to research pubmed database and found literally nothing about this subject. I have thought about this before however... Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted April 16, 2016 Author HearPeers Heroes Report Share Posted April 16, 2016 Let's keep an eye out on printed info on this topic and share anything we find. Ivana Marinac 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted April 16, 2016 HearPeers Heroes Report Share Posted April 16, 2016 Let's keep an eye out on printed info on this topic and share anything we find. Definitely, your question revoked my thoughts on this subject... Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted April 16, 2016 HearPeers Heroes Report Share Posted April 16, 2016 Yes I would have too agree. There is so much sensitive things in the inner ear that can be affected by a number of things. I don't think you should automatically assume that the CI is a direct result of the issue. Should be interesting to see what tests reveal Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted April 16, 2016 HearPeers Heroes Report Share Posted April 16, 2016 Yes I would have too agree. There is so much sensitive things in the inner ear that can be affected by a number of things. I don't think you should automatically assume that the CI is a direct result of the issue. Should be interesting to see what tests reveal I just meant that because the condition is started to be called as "the CI-induced migraine", that's why I wrote that. But this is purely my own convictions - sort of hypothesis (not because it is same what I have experienced) taking into account all what has been discussed about migraine up to now. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted April 16, 2016 Author HearPeers Heroes Report Share Posted April 16, 2016 I have a friend who is attending that conference. I will check to see if she can show me the PowerPoint from the workshop. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted April 17, 2016 HearPeers Heroes Report Share Posted April 17, 2016 I have a friend who is attending that conference. I will check to see if she can show me the PowerPoint from the workshop. I would love to see at least an excerpt of that presentation. Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted April 17, 2016 HearPeers Heroes Report Share Posted April 17, 2016 That would be great if there was video of it Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted April 18, 2016 HearPeers Heroes Report Share Posted April 18, 2016 I would be satisfied at least with sort of directions where to look for other sources. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted April 20, 2016 Author HearPeers Heroes Report Share Posted April 20, 2016 And the wait is over....but it is not much help. Some clarification first. Rene Gifford did present at this workshop but her part was not on migraines and CIs. That part came from Milwaukee. It was a case study on a teen with reduced function with her CI that mimicked soft failure and was eventually connected to auditory migraines. This was more of a report on how auditory migraines can effect how we function with a CI. Not about how CI settings may cause auditory migraines. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted April 20, 2016 HearPeers Heroes Report Share Posted April 20, 2016 Good to know Mary Beth - but I have already searched the scientific carrier published by R. Gifford and I haven`t found anything similar - this was weird to me. Nevertheless, this doesn`t mean that these events are not real - you know that during the Cold War Era a lot of research studies was focused on the field of psychoacoustics and its effects on human well-being. Just one isolated frequency could be - a winner. Still, I have an interesting PhD about audiovestibular migraine which I had to read. I bellieve that we all stumble at certain people who claim that their hearing devices cause weird reactions or similar accidents. On the other side we have discussed the episodes that bad maps can cause weird feeling. Quote Link to comment Share on other sites More sharing options...
Nicole Czarapata Posted March 2, 2017 Report Share Posted March 2, 2017 Hello - My daughter has a Medel CI. Over the last six years, she has experienced different symptoms: localized pain, "buzzing", increased sensitivity to sound, decreased sound quality, nausea, etc. She was diagnosed with migraines and has been put on medicine for that. I was wondering if there is any information regarding CIs and how migraines affect them or whether it could be the CI that is giving her the migraines. I found your discussion from a year ago online and was wondering if you could help me out with any more information. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 3, 2017 Author HearPeers Heroes Report Share Posted March 3, 2017 Hi Nicole, I am sorry your daughter is experiencing so much difficulty. My issue was resolved completely by altering my MAPs. Your daughter's symptoms would concern me too. If it was me, I would return to my CI surgeon and seek some answers. I wish you the best. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Adam Posted March 4, 2017 HearPeers Heroes Report Share Posted March 4, 2017 Nicole, I hate to hear that your daughter is suffering.as a parent, I know that is very difficult for you. Does your daughter have one or 2 CI's? Unfortunately a lot of different conditions have similar symptoms. I would touch base with your doctor and Audi as they know your daughters medical history the best and can help you "rule out" other causes to her problems. Please let us know how she is progressing Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Valentin Posted March 4, 2017 HearPeers Heroes Report Share Posted March 4, 2017 Nicole, I suffer migraines before CI. I know what you say because I had it before CI so I know CI is not related with them (in my case), but is interesting to know as a simple mapping can alter his behavior. I can see that migrains is other misterious illness tht don't know exactly the sources, where we need to have a lot of patience for a final cure. I'm not an expert, I read a huge about it when migrains allow me. My vision is really bad in a post migrain crisis. Howeber, anyone here know about Temporomandibular Disorders and Headache? Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted March 5, 2017 HearPeers Heroes Report Share Posted March 5, 2017 Hi Valentin, please explain - in what relation? What kind of headache? Sent from my EVA-L09 using Tapatalk Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Ivana Marinac Posted March 5, 2017 HearPeers Heroes Report Share Posted March 5, 2017 Auditory migraine...well, I haven't read anything particularly smarter than a year before but I can discuss a theiry where migraine is not caused by her CI than sound individually.Did migraines start with the implantation and are attacks appear only when she has a CI on?Sent from my EVA-L09 using Tapatalk Quote Link to comment Share on other sites More sharing options...
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