Riding the Big One (RLS 24/7, Hanging Ten)

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badnights
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby badnights » Mon Jun 20, 2016 12:28 am

Geez, I would hate that. :(
Beth - Wishing you all restful sleep tonight
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Polar Bear
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby Polar Bear » Mon Jun 20, 2016 6:07 pm

I'd hate it too.
I wonder Eefall, does the covering a noise with a noise, work.
It still doesn't provide the peace of silence.
Betty
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stjohnh
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby stjohnh » Fri Jun 24, 2016 2:33 am

Well, I have tinnitus in addition to rls, for me the rls is at least 100 times worse than the tinnitus. At its worst (several years ago), the tinnitus occastionally kept me awake for an hour or so. It was very annoying, but not life changing the way severe rls is.
Blessings,
Holland

Rustsmith
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby Rustsmith » Fri Jun 24, 2016 10:05 am

I have had tinnitis for as long as I can remember. It is in both ears and has a very high pitch. It sounds a lot like the sound made by the tube in an old CRT televisions, which means that it is so high that it is a pitch that a lot of people cannot hear. So I am sort of double cursed because it isn't something that a white noise generator can cover. Fortunately, I have learned to ignore it 99% of the time and it no longer bothers me when I am aware of it, like right now :)
Steve

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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.

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Tue Jun 28, 2016 4:08 am

Polar Bear wrote:I'd hate it too.
I wonder Eefall, does the covering a noise with a noise, work.
It still doesn't provide the peace of silence.


You are correct covering the noise doesn't really work however it becomes maddening to continue to go without silence. Often I will listen to music to lesson it but then I get tired of listening to music. Besides I have headaches often and don't want to listen to white noise or music. Ignoring it is of course the best BUT you try ignoring a freaking wild bird clucking at you because you are too close to its nest. The bird purposely makes noise so you will leave, in this case I can't get away from myself and I occasionally feel like I can't take it anymore. The noise is always changing and never something nice I can tell you that. It is just another thing added to my severe RLS, maybe it is even related to it as I see several here have tinnitus also.

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Sun Jun 17, 2018 5:52 am

I created this thread 4 years ago and I have reallly crashed and burned this time. My son has given up on me so I won’t even be able to see my grandkids again. He doesn’t understand how RLS messes with me. I have tried to be normal but I’m not. If I was anymore introverted I would be living in a cave on an island. I just can’t cope with being around people without blowing up in anger once in awhile. It is me but then I know I wouldn’t be this way if it were not for RLS. It never gets better.

Dang it I can never win, I feel so terrible. I wish there were an outward sign that I have this disease so people like my son can understand it but there is not. It is bad enough to have severe RLS itself without people hating me for the wrong reason. Kick me while I’m down son and and stab me in the heart, good lord this just isn’t fair at all. Not a happy Father’s Day ever again.

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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby stjohnh » Sun Jun 17, 2018 3:09 pm

EeFall wrote:I created this thread 4 years ago and I have reallly crashed and burned this time.
...It never gets better.

Dang it I can never win, I feel so terrible. ... Kick me while I’m down son and and stab me in the heart, good lord this just isn’t fair at all. Not a happy Father’s Day ever again.


EeFall, you sound quite depressed. If you are contemplating suicide you need to call one of the suicide hotlines or talk to a doctor today.

RLS as you well know is an awful disease. I've had some of the same troubles that you have, happily not as severe. I gave up a couple of years ago trying to be normal. While my current treatment works much better over the last year or so than my previous treatments, it is still quite debilitating. While I would love to do things in the evening, I don't to try to do anything at all past 6 p.m. And I make sure I'm not around children and emotionally vulnerable people after 6 p.m., as I sometimes will be extremely grouchy.
Blessings,
Holland

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Mon Jun 18, 2018 3:13 am

Thanks for the note. I am too curious about the universe to kill myself, sometimes I wish I wasn’t but I will ride the wave (life) to the end. It is just that it has turned out to be a lonely beach. At least I can still read, tend the garden, and watch movies. My wife has remained after 43 years, at least so far or I would be totally alone. I just need to give up on people and try to enjoy living for livings sake. Take care.

stjohnh wrote:
EeFall wrote:I created this thread 4 years ago and I have reallly crashed and burned this time.
...It never gets better.

Dang it I can never win, I feel so terrible. ... Kick me while I’m down son and and stab me in the heart, good lord this just isn’t fair at all. Not a happy Father’s Day ever again.


EeFall, you sound quite depressed. If you are contemplating suicide you need to call one of the suicide hotlines or talk to a doctor today.

RLS as you well know is an awful disease. I've had some of the same troubles that you have, happily not as severe. I gave up a couple of years ago trying to be normal. While my current treatment works much better over the last year or so than my previous treatments, it is still quite debilitating. While I would love to do things in the evening, I don't to try to do anything at all past 6 p.m. And I make sure I'm not around children and emotionally vulnerable people after 6 p.m., as I sometimes will be extremely grouchy.

2BassetMom
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby 2BassetMom » Mon Jun 18, 2018 5:46 am

I'm so sorry that this awful syndrome has affected your life in such a traumatic way. It is a disastrous syndrome. We can't fully explain how it feels or how it impacts our lives. I have one suggestion and you may have already tried it but here goes. Talk to a licensed psychologist or counselor. We run the same dialogue over and over in our heads without finding answers. I found that years ago I was suffering from depression after going through cancer treatment (RLS is much worse!) and a friend suggested talking to a counselor. I found it helpful in that it gave me a new perspective. It broke the vicious circle of conversation that I was holding with myself in my head. For one, I was grieving the loss of a dream of getting a BA degree after working so very hard to get my AS. Do consider this option. If the first counselor isn't a good fit, don't give up. I hope this helps.

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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby Polar Bear » Mon Jun 18, 2018 1:42 pm

Eefall - thank you for telling us how you are, we care how you are.
As I write this in is 14.30 my time. I am standing doing a jig from one foot to the other... unable to get on with some paperwork because sitting down is impossible. Perhaps I will do some ironing until these symptoms hopefully settle a little.
This is a torture to me (and others) and at times interferes with my day to day life. I'm appreciative that I am retired.

However, you have suffered on a total other level. You have been with us as you tried to maintain your job, using up holiday allowances because you were unable to function at work. Then you found you could retire which took the work issue out of the equation. Sadly, as we know, RLS is with us regardless, like a forever friend!! No, it sometimes feels more like a leech that is clinging on and draining us.

Eefall, you have come this far. You have had spells that have been bearable. You have written wonderfully of your experiences of coping.
There could be a book there.... and I'm only half joking.
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

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Mon Jun 18, 2018 2:00 pm

2BassetMom wrote:I'm so sorry that this awful syndrome has affected your life in such a traumatic way. It is a disastrous syndrome. We can't fully explain how it feels or how it impacts our lives. I have one suggestion and you may have already tried it but here goes. Talk to a licensed psychologist or counselor. We run the same dialogue over and over in our heads without finding answers. I found that years ago I was suffering from depression after going through cancer treatment (RLS is much worse!) and a friend suggested talking to a counselor. I found it helpful in that it gave me a new perspective. It broke the vicious circle of conversation that I was holding with myself in my head. For one, I was grieving the loss of a dream of getting a BA degree after working so very hard to get my AS. Do consider this option. If the first counselor isn't a good fit, don't give up. I hope this helps.


Actually I have already ridden that wave and that is when they sent me to a sleep doctor who found my RLS which became worse over the years until I ended up with this crazy bad RLS which only Suboxone works to allow me to sleep at all. Suboxone has many side effects for me and I wouldn’t even take it if I had a choice but everything else stopped working. I live in limbo world now. I suppose I should stop complaining as I am lucky to be alive. Maybe I am writing this to show what the end stage of severe RLS looks like as in what happens to a person who continues over the years to get RLS so bad that they can’t sleep at all without meds and even the last medication has terrible side effects?

I am what happens. The only way out for me is a cure for severe RLS. At least I can still enjoy a few things like reading, gardening, and movies. Hell, I can’t even drink alcohol for comfort as Suboxone and alcohol together will kill me. Hey though I can still whine :D

EeFall
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby EeFall » Mon Jun 18, 2018 2:02 pm

Polar Bear wrote:Eefall - thank you for telling us how you are, we care how you are.
As I write this in is 14.30 my time. I am standing doing a jig from one foot to the other... unable to get on with some paperwork because sitting down is impossible. Perhaps I will do some ironing until these symptoms hopefully settle a little.
This is a torture to me (and others) and at times interferes with my day to day life. I'm appreciative that I am retired.

However, you have suffered on a total other level. You have been with us as you tried to maintain your job, using up holiday allowances because you were unable to function at work. Then you found you could retire which took the work issue out of the equation. Sadly, as we know, RLS is with us regardless, like a forever friend!! No, it sometimes feels more like a leech that is clinging on and draining us.

Eefall, you have come this far. You have had spells that have been bearable. You have written wonderfully of your experiences of coping.
There could be a book there.... and I'm only half joking.


:D Thanks Polar Bear.

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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby Rustsmith » Mon Jun 18, 2018 7:33 pm

EeFall, since you have been a suboxone research experiment of one for all these years, maybe it is time to talk with your doctor to see about trying dipyridamole. Judging from the experience of others on the board who have tried it, you probably couldn't get completely off of suboxone, but if the dipyridamole would allow you to reduce the dose, it might help reduce the side effects that have made life so unpleasant for you. I would love to try it, but I fear that the potential side effects of dipyridamole (reduced heart rate and blood pressure) rule me out as a potential candidate.

As for your comment about alcohol, I totally hear you on that one. So many times during the past 2+ years, I have thought about how pleasant it would be to have a shot of Jack or Crown Royal. I even just spent a weekend with a bunch of old friends who went out drinking each night. I had to explain that I needed to skip that wonderful looking dark beer or glass of wine they had at dinner each night because I wanted to wake up in the morning. It is so unfair how many of the joys in life that RLS steals from us.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

debbluebird
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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby debbluebird » Mon Jun 18, 2018 8:45 pm

I can get away with about an inch in a glass of wine or beer, but that is all.
I try to remember that there are worse things to have. My son in law has esophageal cancer. He is 47. He has had it a year. Life expectancy is 5 years, but I doubt he will make one more year. He is suffering so much.

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Re: Riding the Big One (RLS 24/7, Hanging Ten)

Postby ViewsAskew » Wed Jun 20, 2018 12:41 am

:(
Ann - Take what you need, leave the rest

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