Hello.....am still here

For everything and anything else not covered in the other WED/RLS sections.
EeFall
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Re: Hello.....am still here

Postby EeFall » Wed Jan 23, 2013 3:43 am

I had to look up tinnitus to find out what it is. I have it pretty bad, seems louder in my left ear :lol: but it doesn't bother me. Does it become painful or terribly annoying or something? I just figured it was from cranking up the music loud, I use in-the-ear earphones at work and around the house or outside doing things sometimes. I don't understand how it can be worse than RLS - I must be missing something about this :think: I was also thinking that it seems like, someone mentioned this on another thread he other day, that many of us (RLS sufferers here) seem to be creative such as artists. Music would fit into that too. Do many on this site have tinnitus also?

Betty/WV
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Location: West Virginia, Wild and Wonderful

Re: Hello.....am still here

Postby Betty/WV » Wed Jan 23, 2013 5:13 am

I had it at one time but it seems to have gone away. Just once in a while it will bother me some but not much or for long. And nothing is worse than WED/RLS........
BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

cornelia

Re: Hello.....am still here

Postby cornelia » Wed Jan 23, 2013 12:26 pm

Tinnitus can be as bad as severe RLS. A patient on TV told his story: sounded exactly like it: out of job, no social life anymore and suicidal thoughts. It sounded absolutely horrible.

Corrie

Betty/WV
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Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Hello.....am still here

Postby Betty/WV » Wed Jan 23, 2013 4:05 pm

Thats terrible, I didn't realize it got that bad, but thinking about it, I can understand how it could. Sometimes I wonder how we survive these things. I hope you get relieve from your tinnitus.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

EeFall
Posts: 1494
Joined: Thu Jan 03, 2013 4:11 am
Location: USA

Re: Hello.....am still here

Postby EeFall » Fri Jan 25, 2013 4:11 am

Wow, I'm still not sure how it could affect someone so badly, I hope I don't find out. It is just a little annoying to me and that is it so far.

moonlight
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Location: scotland

Re: Hello.....am still here

Postby moonlight » Fri Jan 25, 2013 10:40 pm

Betty hugs to you and I hope things get better for you.

Eefall please don't think me rude but if you have tinnitus quite bad,youd know about it , it's no laughing matter. If your wearing in the ear head phones, all I can say is dont. Tinnitus can be from too loud noises, head phones, playing in bands etc , also it can be like mine, where it just is......I have suicidal thoughts and panic attacks from the tinnitus, if it gets worse I will not be able to stand it and will most likely do something drastic....there is no cure but there are plenty of oxotoxic meds out there that will cause or make existing tinnitus worse. I have the tv on at the moment ...I hear my tinnitus screaming over it ...I hear screaming constantly over everything in life> there is no escape , there is no silence, wake up during the night the panic attacks start, I will never in my life ever hear silence even if i go deaf........IT IS HELL...To me it is worse than RLS/WED as at least i can get some respite from the pain of the rls .....but cant take any medication now for fear of the tinnitus getting worse and me killing myself , my son was 21yrs old today and he needs me.

So I hope your tinnitus just stays 'a little annoying' and I hope that now you are more knowledgeable on how it can affect someone so badly.

Just thought I'd add I'm also hypersensitive to sound...partly due to my mental illness and partly due to my tinnitus......the expression betweena rock and a hard place comes to mind, I wouldnt wish this on anyone.
sleep is not only a dream

ViewsAskew
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Re: Hello.....am still here

Postby ViewsAskew » Fri Jan 25, 2013 11:42 pm

I can imagine how horrible it is. I'm sensitive to sound now and have a bit of tinnitus now and again. When it flares, it's miserable. And, my guess is that this is not even bad compared to you, Moonlight.

I think of it as some music you can't stand being on all the time and preventing you from hearing anything. Yet you can't turn it off. As if I had to listen to Alice in Chains all the time - like the opening to Nothin' where it's discordant or the horrid screeching guitar solo.....makes me shiver just thinking about it.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

moonlight
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Location: scotland

Re: Hello.....am still here

Postby moonlight » Fri Jan 25, 2013 11:56 pm

Yes Ann good description and I do believe you have to experience it to understand remotely. I honestly hope your tinnitus doesn't get worse....it's prob med induced. it's a very cruel condition...mine is permanent but got worse not so long ago....sometimes I can focus out for an hour or so but am still aware,
tho not going crazy...usually when i'm drawing or painting or playing guitar.....then reality strikes.
I often wish so much that i didn't have it but n amount of wishing will change anything.
sleep is not only a dream

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Hello.....am still here

Postby Betty/WV » Sat Jan 26, 2013 2:49 am

Dear Moonlight: I am so sorry you are suffering so much. Like I said before, I don't know how people even function with these dibilitating illnesses. It is so sad. I think that is why I like the phrase so much, "Be especially kind to everyone you meet, because everyone is fighting some kind of a battle". Truer words were never spoken. I believe so much in prayer, even though I don't pray as much as I should. But there is relief in prayer, God hears our prayers and cares about our suffering. I will remember you, Moonlight in my prayers.

Also, I am sensitive to sound. Sometimes the only way I can watch TV is to turn the sound down real low. And some music and some peoples voices set my nerves on edge.

Take care, I will be thinking about you.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

moonlight
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Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

Re: Hello.....am still here

Postby moonlight » Sat Jan 26, 2013 6:30 pm

Thank you Betty x
sleep is not only a dream

Polar Bear
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Re: Hello.....am still here

Postby Polar Bear » Sun Jan 27, 2013 1:06 am

I find I have a little bit of sensitivity to sound but nothing like what you describe. I would startle readily if someone unexpectedly opens a door.
Also, recently I have noticed what I assume to be tinnitus, a slight ringing in the ears, but it comes and goes and certainly is not severe, nothing like those of you who have it so badly. I believe might may be induced by medication.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

rthom
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Re: Hello.....am still here

Postby rthom » Sun Jan 27, 2013 2:07 am

I had it once really bad more like betty's I thought I was going to shoot myself because I had no other choice--found out it was due to a bad medication mix and am now much more careful no matter what any professionals say is ok. It was in both ears and so loud I could not hear--even at night--white noise I was sure made it far worse and as the meds wore off it improved--have been vertually paranoid of it ever since-(I have no phobias , etc. that one although my legs still would wake me I never got to sleep in the first place with.

I have since always felt bad for folks with it---this is why i haven't answered this before--I was re-living it whenever I read something about it---to weird--so I just avoided the subject

I hope yours improves alot---ps I found cough medication, alcohol, and other meds could make it alot worse---especially sleep cough meds and antihistamines with the sleep stuff. Maybe something helps here---I hope

Betty/WV
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Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Hello.....am still here

Postby Betty/WV » Sun Jan 27, 2013 5:27 am

rthom: The meds you mentioned that made the tinnuitus worse are also a "no no" for WED/RLS . Maybe there is a connection.
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Sun Jan 27, 2013 9:32 am

good point, maybe. Back then my WED was so bad I used to rock back and forth and beg, plead and pray for morning to come and it to go away every night. I had no idea what it was, just that life was insane at night (was doing construction during the day--was terified of bedtime--not a good mix). :cry: I never ever want to feel like that again (and my wife doesn't want the bruises from the occasional minutes I dozed off).

Polar Bear
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Re: Hello.....am still here

Postby Polar Bear » Sun Jan 27, 2013 2:38 pm

Hmm... I was thinking that it could be the codeine that could cause the occasional ringing in the ears - codeine would be kind to WED.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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