CI and Migraines...

Audiofuzzy

Audiofuzzy

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OMG!!, I got an appointment for CI candidacy assessment in mid-May!
I know I beyond a doubt qualify, and I always wanted the CI,
but the fear of my monstrous migraines worsening from too much sound is really keeping me back from just going - no, light speed bee-lining! for it.

I know I asked about this years ago, but meantime things change, so I ask again - does anybody have any experience with how the CI affects migraines?
I am extremely sensitive to two triggers - smell and sound, and a bit less to a third -bright/flashing light.

I am worried that constant barrage of background sounds will make me sick all the time.
Or perhaps the CI could be turned down or low, just as any regular HA , as according to a need?

Help, please because my hearing is progressively worsening and I would finally go for it without any fears..

Fuzzy
 
I've had migraines all my life and since I couldn't hear, I didn't have one of the classic signs of migraines (phonophobia- fear of or avoidance of sound). The number of migraines I have had has not changed in the 2 years I've had my cochlear implant.

Honestly, you get used to the sounds. The audiologists start you slow with just enough sound for you to hear new sounds but not be overwhelmed, you'll then increase the volume daily or weekly until your brain gets used to the idea that sound is everywhere.
Eventually you will get specific MAP and on and on.
It takes time and most importantly, wearing your processor from the moment you wake up till the moment you go to sleep.

Some people enjoy a "deaf day" or two but I can't stand being so deaf that I can't hear my voice, my animals just move their mouths, I'm cut off from people and so many beautiful sounds.
 
I don't really have migraines. Do get the occasional headache, but it's mainly due to something else. When I do have headaches or the rare migraines, I do become extra sensitive to sounds, so I use the noise programs on my CIs, and sometimes even take the CI processors off for some relief.

Once your CI/s have been activated, they'll start you off easily, with a quiet program to ease your brain into it, allowing you to become accustomed to the CI signals. Over time with each appointment, the volume/levels will be brought up and the programs more finetuned.
 
Thank you!
I so want the CI, but also am scared it will make me cause to be in constant pain.
oh well, the story of my life..
lol

Fuzzy
 
Do yourself a favour.
before you rush for the drill hole in your head.
sincerely chat with those who fell for the the hype. And now pain is their constant companion.

Your head
your choice.

CI companies are not your friend.
they are their to push their product.

Your best interests are not theirs.
 
I have ci but I do gets them only comes from the bring light. I have to wear sunglasses when I'm going outside. but also bright light from computers .I only use tablet that had blue shade it work for me. that it
 
Thanks, guys! that is encouraging. maybe it won't worsen my migraines, either.. one can hope :)

Fuzzy
 
Congratulations!!!! I'm not much of a migraine sufferer so I have nothing to add there sorry. I just came in to say whoo hoo!!!! Good luck on your journey.


I will say in the beginning when I was not used to the stimulation every time we did a new mapping I'd get a headache. But it wasn't anything ibuprofen couldn't take care of and it didn't come back either. If I where my headpiece under my hair for a long time the magnet strength is too strong and I'll get a headache. I could avoid that by wearing a different head piece with less magnets. But generally my hair is up and I need that strength for it to stay put, my hair is rarely down. If I knew I'd be keeping it down all day I'd just use a different headpiece and the whole thing could be avoided.

Btw I looooooove my CI. I wish I had more thumbs so I could give it more than 2 thumbs up :)
 
Audiofuzzy said:
Thank you!
I so want the CI, but also am scared it will make me cause to be in constant pain.
oh well, the story of my life..
lol

Fuzzy
Click to expand...
I was told I could be a good candidate for a CI and it would be for my right ear . This is the side of my head I have most of my pain , I can't wear
a HA in my right ear for very long . I decided not to even go into to Boston to see the doctor , taking the risk of having more pain just to hear better is
not worth it to me. It was cold and raining out last week and being outside with my dog for a shot time made my head hurt . After I had my accident
I couldn't look at any flashing light , I would get a seizure . I am better now . I am sorry to hear you have migraines , I have a niece that get them
and I know it keep her from being able to do a lot .
 
ambrosia said:
Congratulations!!!! I'm not much of a migraine sufferer so I have nothing to add there sorry. I just came in to say whoo hoo!!!! Good luck on your journey.


I will say in the beginning when I was not used to the stimulation every time we did a new mapping I'd get a headache. But it wasn't anything ibuprofen couldn't take care of and it didn't come back either. If I where my headpiece under my hair for a long time the magnet strength is too strong and I'll get a headache. I could avoid that by wearing a different head piece with less magnets. But generally my hair is up and I need that strength for it to stay put, my hair is rarely down. If I knew I'd be keeping it down all day I'd just use a different headpiece and the whole thing could be avoided.

Btw I looooooove my CI. I wish I had more thumbs so I could give it more than 2 thumbs up :)
Click to expand...

Sorry I don't remember, but how long ago were you implanted?
 
whatdidyousay! said:
I was told I could be a good candidate for a CI and it would be for my right ear . This is the side of my head I have most of my pain , I can't wear
a HA in my right ear for very long . I decided not to even go into to Boston to see the doctor , taking the risk of having more pain just to hear better is
not worth it to me. It was cold and raining out last week and being outside with my dog for a shot time made my head hurt . After I had my accident
I couldn't look at any flashing light , I would get a seizure . I am better now . I am sorry to hear you have migraines , I have a niece that get them
and I know it keep her from being able to do a lot .
Click to expand...

Thanks, and,
my brother suffered from epilepsy so I get what you are going thru, too. I am so sorry.
I figure the accident you've been in must have caused some damage to the area and parts of the brain that are responsible for smooth communication between 'whatever is in there', hence the seizures afterwards.
I wonder, if it bothers you a lot, if it would be worthwhile for you to be on some anti seizure medication?
Like you, I am extremely sensitive to many other triggers (beside sound and smells) like bright flashing light, missing meals, stress, exertion, under-sleeping, menses (although not these anymore, lol), alcohol etc.
Now, a lot of migraine preventive medications are primary for other uses. One of them is for epilepsy, called topamax.
It is antiseizure med that I take with good results daily for my migraine (as I don't have seizures).
perhaps you'd like it too, for your seizures? you may try. you start with low low dose for at least two weeks before going higher
to get used to to the side effects (which go away with time).
you may want to extend the "getting used to" time to a month, even, if you wish to- like I did.


I do understand why wouldn't you hurry to get CI on the side you hurt, but why about the other side?

Fuzzy
 
Audiofuzzy said:
Thanks, and,
my brother suffered from epilepsy so I get what you are going thru, too. I am so sorry.
I figure the accident you've been in must have caused some damage to the area and parts of the brain that are responsible for smooth communication between 'whatever is in there', hence the seizures afterwards.
I wonder, if it bothers you a lot, if it would be worthwhile for you to be on some anti seizure medication?
Like you, I am extremely sensitive to many other triggers (beside sound and smells) like bright flashing light, missing meals, stress, exertion, under-sleeping, menses (although not these anymore, lol), alcohol etc.
Now, a lot of migraine preventive medications are primary for other uses. One of them is for epilepsy, called topamax.
It is antiseizure med that I take with good results daily for my migraine (as I don't have seizures).
perhaps you'd like it too, for your seizures? you may try. you start with low low dose for at least two weeks before going higher
to get used to to the side effects (which go away with time).
you may want to extend the "getting used to" time to a month, even, if you wish to- like I did.


I do understand why wouldn't you hurry to get CI on the side you hurt, but why about the other side?

Fuzzy
Click to expand...

I don't get seizures anymore , I do get pains in my head when it's cold out. I don't want to risk losing the little hearing I do have in my left ear , and I think since I
will 70 yo this year , I may not be a good investment . I rather have my insurance spend the money on someone younger than me.
 
oh wow, that wasn't that long ago! and you already so love it ! you seem to be adjust just fine :)
wish you continuing luck with your CI!

Fuzzy
 
hoichi said:
Do yourself a favour.
before you rush for the drill hole in your head.
sincerely chat with those who fell for the the hype. And now pain is their constant companion.

Your head
your choice.

CI companies are not your friend.
they are their to push their product.

Your best interests are not theirs.
Click to expand...
 
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