Ringing in the ears, from Tysabri..anyone else?

[sunshine008]

Hi,

going in for my 2nd tysabri infusion tmrw. and have had terrible ringing in my ears since first infusion. I've googled it to death, and do see it's listed as a side effect. Yet no one knows how to fix it. I"m going in to see an ENT in a few weeks. Yet when I told my neuro his ridiculous answer was it's not from tysabri, ofcourse it is! day 2 after infusion the party in my head began.

I"ve tried yoga, tons of natural supplements, and nothing. So, my concern is it'll get worse tmrw with second infusion. I can't sleep at night, i play white noise on my cell from an app. it's really disturbing

so, anyone else going through this and what have you done to help it?????? I"m desperate for some answers and ideas

thanks!!!

[sunshine008]

oh my..am i the only nut whose ears are ringing like my brains having a fire drill! too funny, asked others at infusion place also..they all said nope we hear fine! yay me

[kim-mastro]

I'm on Copaxone 40 and I have ringing in my ears since I started. I'm not sure if it's from C and it sounds like it isn't as bad as yours. I hope you can find some relief. Have you tried Lipoflavenoids? A friend of mine swears by it.

[sunshine008]

i'm sorry you have it also, yet how are you coping especially at night? i play white noise on my cell, found an app so i can sleep.

weird thing is after infusion 2 yesterday it got quieter, i was so happy..than tonight it got louder. yuck!

[kim-mastro]

Some nights are "quieter" than others and since I don't sleep well anyway I'm usually so tired I toss around then fall back to sleep. Other nights I read until I get sleepy. The only caution I would give you is to watch the volume if you are using ear buds-if your volume is too high it could be contributing to the ringing in your ears!!! Good luck! Please keep me posted on how you're doing.

[sunshine008]

Hi,

reading is a good idea, i'm glad your finding your way through it... for me it's gotten alot louder. it's going to be an interesting mos working with this sound.

at least i now know it's from the med. i have an ent appt which i personally think is a waste of time, if it's from med. i'm taking the flavinoids, also some other homeopathic stuff too. nothings working yet..

[kim-mastro]

I'm sorry that you're having trouble finding peace. That stinks! Maybe the ENT will have a solution for you. Keeping my fingers crossed!

[sunshine008]

Thanks! I"ll stop.... just gotta be positive! might do infusions every 6 weeks i'm thinkin..

[its2much]

I've had ringing in my ears

for years now at this point - it comes and goes but is almost always there. I am not on tysabri, never have been.

Lately, (I know this probably sounds crazy), I get this ticking sound, similar to a watch ticking for a few minutes during the ringing - it happens a few times every day. Maybe it's the crocodile from Peter Pan - lol????

[gwynnf]

I've had ringing in my right year for years. I was on Tysabri but can't say that's what caused it. I do know that it's compliments of the MS as well. I'm just used to it at this point. It doesn't keep me awake at night. I've learned to use it as my "white" noise and let it lull me to sleep. Strange yes, but a way to work with it so it doesn't drive me crazy. Hope yours improves!

[Seasha]

Tinnitus

Hey sunshine - I've had constant ringing (tinnitus) in my ears for about 30 years now- I've had MS for 25. I have never been on Tysabri, nor have hearing loss or Meniere's disease or any tumor.

I've run across other posts here with people experiencing the same problems. http://www.msworld.org/forum/showthr...light=tinnitus

Just found this information that might be helpful for you:

"Multiple sclerosis is just one of many conditions that could contribute to tinnitus. But the real question is how ringing in the ears can be treated to relieve this recurring discomfort. If tinnitus has resulted from MS, it is likely that healthy nerves have been destroyed to cause the symptom. In some cases, nerves in the brain may have been affected to signal the brain to hear ringing. Treating ringing in the ears related to multiple sclerosis is difficult since it is hard to detect the problem early on. Once diagnosed, there is no set treatment for the disorder; a doctor may focus on managing symptoms instead."

You can read more here: http://healing.answers.com/physical-...rosis-tinnitus

With that in mind, there are other reasons for tinnitus- http://www.mayoclinic.org/diseases-c...s/con-20021487

I've had it so long now that I don't notice it as much. At the beginning tho it make me bonkers!! At night however I use a fan as white noise to help with my sleeping.

Not sure it's a Tysabri-induced thing, but best to ask your neuro or an ENT next time you have an appt. I hope this is just a temporary irritant for you and it goes away soon enough.

[dann]

ringing

I started taking motrin everyday as premedicine to beta.....started having ringing in both ears, really bad. Read motrin bottle...ringing of the ears happens in less than 2%. Well I then stopped taking motrin. Within 2 or 3 days, ringing had stopped and has never returned.

[fishead]

Was on Tysabri for 36 infusions and never had ringing in ears. Has your doc checked ALL of your ELECTROLYTES???? Sometimes an imbalance in them may cause tinitis.

I sure hope you get this resolved

[sunshine008]

thanks so much everyone for all the info.. i went to see the ent. he did a bunch of tests, and his conclusion was its from the tysabri.

it def is because my nxt infusion is due next week and i've noticed the ringing got slightly lower past few days.

holding off next infusion because got sick again, it drops our immune system's so low we are like walking little sponges picking up every germ out there, or at least i am!

i think if i do it again, and i'm not sure i'm setting it for the 6 week mark.