PPMS with hyperacusis - changes EVERYTHING

42 year old (yes-I used a calculator to figure that out) with PPMS and hyperacusis (abnormal amplication of sound(s), hearing loss & constant tinnitus). My husband is hard of hearing & we have 3 teenaged daughters (14, 12 & 10).

i can relate and do APPRECIATE every single post I have read on this site. Hyperacusis has changed the way I deal with every symptom.

Anyone else in this scenario?

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9 Replies

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  • Hi, I have hyperacusis, transient unilateral hearing loss--tinnitus only as my hearing begins to improve again. At first I couldn't understand why I was now so annoyed by simple things like the shower fan noise until I read that this too was an MS symptom. I have RRMS/SPMS

  • Yep, me too, didn't know there was a name for it!!!

  • Hi kris1973 welcome to the message board that keeps growing :) lts funny that you brought this up, l have a hearing test next month. I am always asking "what" "huh" "excuse me" or l just fake it and say ok. Also have a constant buzzing in my left ear. Enough to drive you nuts. Lol Hopefully they will figure out what is going on. Had no idea that it could be ms related tho. Ugh

  • Seems everything is related to the MS Monster!

  • agapepilgrim I'm just going to have to remember that it's not my body anymore, it's in the hands of MS and there are so many things that go along with it.

  • Good luck on your hearing test. Most results "seem" to have normal results relating to hyperacusis. More info is posted at hyperacusis.org (if you can ignore the typos!). Please let us know how it goes.

  • I'm very happy that you have a spouse and children to assist you during this difficult time. I'd say, have hope and never stop believing that it'll go away. At least for me, at times, I ride it out. 9 out of 10 times it's fades away. I'm praying this will also be the case for you. Blessings

  • Thank you for all the responses. I hope you all had a nice holiday.

    I do have a great support system. It is extra hard now that the girls are back in school. They walk in the door happy & loud - it takes every ounce of me to not ask them to quiet their voices. I won't take their happiness away! They have had to be practically silent at times this summer while I was resting. The ear issues are significantly effecting my equilibrium & increasing my vertigo. I have tried titrating up my meclizine but it didn't help. My noise-related ear pain has really been constant. It seems to get worse when my fascial nerve pain flares which it has for the 2 weeks. I have tried to limit my earplug use because the amplification is worse when the earplugs come out. When my ears really hurt-earplugs are not an option. What are others doing to help with the noise/tinnitus/pain?

  • It is so very sad how many different ways this monster can ruin our lives, take the little joys out of every day living that we used to take for granted, like our school children coming in, or someone posted her teenager asking for a ride and she was in too much pain. And no one understands. All they feel is rejection because we look healthy. So very frustrating. All I can do is keep repeating the Serenity prayer: God, give me peace to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference." And there is nothing I can do about all the mis-firings going on in my brain causing my body, mind, and heart to do, say, and feel things that are not who I am in my soul. And, Lord, please give my loved ones grace to understand.