feels like earwigs in my ears

[lyndarae]

i have had rls for ever but now it feels like the crawling is in my right ear i went to doc and i had a cut because i poked myself i am going nuts please if anyone else is having crawlees in the ear i wold know i am not nuts also i have not had more than 2/3 hours sleep for over a year just starting to get on meds i have along story help me....

[jumpyowl]

We are ready to help you but we need more info about you.

You have a long story? Let us read it. Try to condense it and "time line it!"

Do some reading starting right here!

We all need help and possibly can also help.

[becat]

It's me again,
Yup my grandmother has an awful time with itching, ears, scalp, shoulders. I have one ear that does that. It's my opinion that RLS can effect the whole body.....stomach, arms and legs, neck back......etc.
Jumpyowl is right my dear you need to really fill us in here.
We are , ok mostly Jumpyowl, is working up a new form for us to give to potential RLS suffers.
We need your story to help us. We've banded together to fight our own fight with the medical professionals. Please share as much as your welling with us. It may help the next poor person down the road.
And some of us are going to the national meeting in NOV. (12-13 in sunny Calif.) Not sure how many we can corner but I bet I can a few. You can find the info about the meeting under announcements. We have some fun too, I'm sure.
becat

[jumpyowl]

Becat, if I will ever run for a public office ((big fat chance) you will be my campaing manager. Well worded, artista!

[Guest]

ok guys here goes,first let me tell you I have only owned a computer for 1 month so bare with me on spelling ect,,,I was born in Pocatello Idaho my parents were both alcoholics as were their parents I cant remember too much of my younger years there were alot of scary things happening my mom tried killing herself several times and the peramedics would carry her out I have no memory of this my older sis does. I had painful legs all the time I was told it was growing pains. My periods came and I always had to stay in bed with the heating pad on my leggs. I started drinking and doing drugs at 14. No one was in charge.All my teenage years were running and gunning I really have no idea how I graduated. I married my first love we met when we were 16 and married when we were24 I was pregnant We were divorced before our daughter was born. The only time I didnt drink was during the pregnancy I could never sleep and drinking helped or so I thought. Then I went to see a substance abusive counsler who put the moove ooon me soooo...I started into cocaine when ever I could get it I was a mess then I met a wonderful man and fell so in love we married in 6 months time I was not dooing coke anymore but still drinking he could drink like a gentlemen i had pains in my legs and could not sleep. I got pregnant I lost the baby 2 months in I had one period got pregnant again had a beautiful daughter by emergancy c section. 5 months later we moved to maine I HATED IT NO friends or family did not have time to mourn the loss of the baby moved across the us. The house we moved into my husband had grew up in the tennets had done 10.000 worth of damage to the inside alone it spelled like the dump we had no money I left the family home and hit the bars My family doc put me on amitriptaline I started seeing a therapist I was a walking zombie I was still drinking and sleeping all day cause I was sick from drinking we decided we didnt want anymore kids my husband was fixed cant spell the right word I got pregnant had an abortion husband was fixed again true story Then my dad died and the rls started was put on klopin and got addicted over night was in and out of the mental hospital and on every antidepresant out there and still drinking then moved to austraila my husband got a job there well those aussies sure know how to party 3 years later we moved back to maine at that time I was on prozac and zanax then we moved to florida my inlaws were there and my best friend my husband started a consulting business in chicago so i was pretty much on my own my youngest daughter was 16 by then I got involved with a group of people who were into cocaine big time an off i went. now i am doing coke in the day and zanax to sleep 6mg a night i am in bad shape everything falls apart the husband has had enough takes our daughter and leaves.I have been off cocanine for 3 years off prozac 2 years off zanax 1year and have not had a drink in 14 months I am in AA and doing one day at a time now i am trying to deal with the damage i have caused my rls is 24/7 my feet wont stop tingling my legs wont stop hurting and I cant sleep laying in bed at night I cant help thinking about what an awful wife and mother i was the guilt is endless and i know to stay sober I cant go there I have been back home in Pocatello for 2 years now I hang out with my sister but I have no friends right now i pretty much stay to myself My dad had rls and both of my daughters have it another thing for them to hate me for I have been taking mirapex for about 1 month and I dont have to kick my legs at night but its not helping the daytime tingels and pain and no sleep and now the thing in my ear i swear it feels like there is an earwig in there I take synthroid and thats it I hope this didnt take too long I am 50 and just want to try and make some amends to people and start an rls support group here well thanks for listening this should make for some good reading late at night hahahahah got to laugh or i will cry any advice I will be grateful lyndarae

[becat]

WOW, You have seen alot in your lifetime, enough to make stress a silly word.
About your parents:
You aren't allowed to pick your parents, God does that for you. The life given to you is just that, you decide where it goes. You were caught up in a very difficult lifestyle and no one noticed in time to help. You are not, not will ever be responsible for the pains, ills, short comings your parents had. You couldn't have changed who they were. You can forgive them, for your own sake. No you don't have to forget. You can't really forget, it's what will keep your head straight. you know better now, and your doing better. Be proud of the steps your taking, however small they are. Each step gets you closer to that wonderful you inside.
I can't say that with all you'd been through that my choices would have been much different. But you see, You are trying to change the way you live. You've made the change in your life. And my dear, your winning already. It's a tough thing to go from the party life to a sober life. Pain is real and it does amazing things to us. It's the pain in your heart that works you the hardest, the physical can be dealt with. You right, your paying for all you've done in the past. But the flip side would be to ignore it and have no hope that all can start over. Your having to ammend the things that went wrong. This will inpower you, build you, make you stronger than you thought possible. Your going to have to work baby steps with the kids. it took time to do the damage, it will take longer to fix. The gift in that is that it is so worth it. Your heart will be right, their hearts will fill better, and your guilt will lessen.
Your in a tough spot about the medication. Since your honest about it, I know that is hard, with your self and your doctors your choices may be more limited. But the right doc. will help you find a path to follow.
Lyndarea God Bless you, your working hard to rebuild a good life for yourself. Know that this pain is going to be well worth it when you come out the other side. Even on those bad days, tell yourself that you are worth the best life out there. No one can tell you different. Your here for a reason, your life is just starting.
Thank you so much for sharing what had to be difficult, if not painfull for you. Your still not alone. I for one care and grateful your here to share.
Prayers are with you.

[Guest]

hey becattx thanks so much for the words of encouragement you know part of the pain for the last 14 months is the late nights of suffering alone no one to talk to about this or anyone to hold me and tell me it will be all right or run me a hot bath its hard not to feel sorry for myself and that wont help my AA support is great but they understand alcohoalism not rls and some think a drug is a drug type thing and that a person should just make due I can not function with out any sleep as you know its so great to be sober ya know I thought in the begining it was goooing to be so nice not to be sickand tired anymore talk about being tired wow god granted me the freedom of not needing a drink and for that i am so blessed even through all of this pain i dont want a drink it will take alot more than this to make me pick up one all i ask for is some peace from this a few nights a week even 1 night 1 hour would be wonderful thanks to you and this site at least i have thought about others for the last few nights and that takes me out of myself so im not thinking about the pain i could go on but thanks again and i so look forward to hearing from you chins up right? lyndarae

[Sole]

Lyndarae,

Congratulations on the sobriety!!! And thank you for being willing share your story with us. Just a few comments I'd like to make regarding your RLS. I agree with becat. It may take some looking but I'm sure you can find a Dr. who can help you find the right medicine, without there being any major "triggers." Who is prescribing you Mirapex, right now? Have you discussed the need to supplement with another drug? Have you considered taking a dose of Mirapex in the morning to help during the day? I have been taking it for under a week and am having good results. I take .125mgs in the morning or afternoon, if needed and .25mgs at night. Which I'm pretty sure I'll be upping shortly. I am also taking Klonopin. Yes, it can be addictive so your concerns are very valid. I can't comment on whether or not starting it up again would be a good or bad option for you but you are right, YOU MUST SLEEP. You probably have concerns about asking your doctor to prescribe any benzos or opiades because you're afraid of being treated like a drug seeker. If it makes you feel any better, they treat people without addiction issues like we're just drug seeking too! Don't let that stand in your way of at least asking. There may be other members here who have dealt with addiction and RLS. Hopefully you'll get some good feedback from them.

Sardsy75 (Nadia) is an excellent resource for non-pharmaceutical therapies. She will be able to give you tons of information and places to FIND information. One link she references a lot is http://www.rlsrebel.com . I found this site very helpful. One technique I tried may be something you might want to try. I think it might work for you because it sounds like you have more than RLS going on. There's a lot going on in your head right now...a lot of stressors that not only make the RLS worse but make it very hard to put your brain to sleep at night. You know what, I'll just go find that info for you and paste it in this message. BRB

Below are some quotes from that website:

If I suspect the RLS will kick up when I go to sleep, I use earphones connected to a portable CD player and I play music. When the CD is over, it shuts off on it's own. I prefer songs that are fast paced or have lots of words. It seems the fast jazzy music actually helps to send impulses to my brain that are more jazzed than the useless impulses it's sending to my legs. It works best if I turn the volume low and make myself listen HARD to each word. Symphonic or relaxation music does NOT work. It's gotta be "busy" music.

Note: I used this technique for the first two months and then I switched to just concentrating on something in detail. I haven't had to use the earphones for a month, and I haven't had the RLS keep me from falling asleep for that long. I've HAD RLS during this time...but I've still gotten to sleep. A few times, I've thought to myself, "You'd better put the earphones on and listen to music," but then I just get mad and say, "The heck with it...I'm going to just focus on something in detail and go to sleep." Strange...but it's working.

I used this technique for a couple of nights and it really worked. However, I turned the music up to a volume that would usually keep me awake. In fact, I actually tried NOT to fall asleep. Listened to the music, voices and percussion very intently, mouthing every word to every song. Next thing I knew it was the morning.

For many RLS sufferers, there is nothing more frustrating than watching television or going to a movie. The only possible exception is flying in an airplane and dealing with the small seats and lack of leg room...but that's another story. While I'm watching a movie or television program my RLS will kick up 90% of the time.

When the RLS kicks up, I used to just get up, walk around, do dishes, change the laundry. . .ANYTHING to be moving. In other words, I used to panic. Now, I tell myself, "CONCENTRATE ON THE MOVIE!!!!!" I start watching the makeup on the actors, the movements, really listening to the conversation, guessing what will happen next. Before long, I realize my legs have relaxed. It works!

This works for me too, at times. There are many good ideas on that site. Some work for some people and not for others. It's all trial and error. I say, don't knock it till you try it. Like I said, Nadia will have a million more bits of information for you, I'm sure.

I'm glad you here. It's a great place to empower yourself with knowledge and even get some cyber hugs when you need them.

Oh, one more thing, I know that AA tells you you're not supposed to feel sorry for yourself. But there's balance to everything. There's a big difference between having an occasional pity party (which we all need once in a while) and setting up shop at the pity party. It's a part of taking care of you. We allow others to give us sympathy. Allow yourself the same priviledge.

[Guest]

hey sole thanks so much for the good advice I see a nurse practioner because I dont have insurance and they work on a sliding scale her name is jacque i actually like her and she has been so supportive with my sobrity progress she is worried about putting me on anything addictive but after my visit last week full blown pannic attack i think she is getting it she is suppose to be calling me today and i was plannung on asking her for some ambein dont know what she will do the mirapex helps with the jerks i take 0.25mg at bed time and if i feel the jerks comming on during the day i take one this is working beautifully for me my big thing is the tingling in my feet 24/7 and the pain and of course insomnia because the tingling wont stop right now its 87 outside and my feet feel like blocks of ice wet and cold socks dont help or shoes or hot soaks as soon as im done they are cold again anyway i will try the music thing and any other advice i can get i just want some PEACE know what i mean?

[Sole]

Lyndarae,

I can't totally relate to your frustrations. I too see a nurse practioner. She's my biggest obstacle in getting the meds that help the most. I have an appt. with her of Friday. I'm going armed with enough information to either educate her into giving me what I need or make her head spin so much, she'll give me what I ask for out of pure confusion! At least that's what I'm hoping for. I hate having to fight....especially with people who aren't too bright.

Your feet are ice cold, huh? Weird. Mine feel like they're in a furnace, unless I'm barefoot, in the house and it's cool. Keep us updated on your visit with your NP.

[jumpyowl]

Sorry to have left for the major part of the afternoon but finally I could catch a few blinks of sleep this afternoon and I just had to take it!

It took a lot of courage to tell your life story. It is a wonder that you are still alive and functioning! That just shows what one human being is able to withstand.

You wrote in another thread:

another sleepless night and I am still alive I was going to call my Doc and ask her to give me a persciption for neurontin but jumpyowl (spell) said I should try Mirapex which is what I am taking for about a month now It has helped the jerks but not the daily tingling and pain I think I have my doc where I want her right now so I dont want to call till I know for sure the best thing to ask for I was also going to ask for ambien for sleep!

I am going to be checking the site all day and hope I have a better idea what to ask for I hope she doesnt tell me to jump off cause at this point I just might lndarae

Well, this should teach me not to give advice without knowing the details. I did not know you were on Mirapex. At a fairly low dose to be sure.

You may be right. Neurontin could be the next step. But it may not give you what you need the most: SLEEP!

The day unfortunately is over so you may not be able to reach your nurse practitioner today.(perhaps not, you are in Montana, are you not?) If you can, ask her for chloralhydrate 500mg/5 ml syrup. Or another sleep medication such a flurazepam at least 30 mg.

Ambien may not be a bad one (much more expensive than chloralhydrate). And there is the Sonata (even more so) but not as druggy.

Try to do something that will ensure some sleep tonight. Are you on antidepressants???? Or similar medications? Knowing your history I am surprised that they did not put you on at least one.

One last advice. Do not go to bed and TRY to sleep. That is usually counterproductive. Read upon insomnia on the NET if you can.

See (read) you tomorrow!

[Sole]

Well, this should teach me not to give advice without knowing the details. I did not know you were on Mirapex. At a fairly low dose to be sure.

You may be right. Neurontin could be the next step. But it may not give you what you need the most: SLEEP!

This may be a very silly question that I should have asked a long time ago but if the Mirapex works to calm my legs, why can't I just go to sleep now? Are there two parts to RLS? Something I'm missing? It just seems that if the legs are calm, we should be able to go to sleep without such problems...but nevertheless cannot.

[Guest]

OK KIDS HELP THE NP DIDNT CALL YESTERDAY SO I CALLED HER TODAY WELL SHE SAID NO WAY TO THE AMBEIAN BUT SHE GAME ME 2 weeks of sonata?????? I think she is going to dump me she wants me to go have a sleep study i would love to do that but i dont have insurance does anyone know or had any experience with sonata and does any one have a roough idea about how much sleep study could run??? also i need some help trying to find a doc who knows about rls in Pocatello Idaho boise is 180 mile away....my np told me about 6 months ago that her husband has rls and takes klonapin hello lady i need a punching bag lyndarae

[jumpyowl]

I already mentioned Sonata in connection with ambien just today on this board. It is shorter-acting than ambien, and also new, thus expensive.

Sleep study would be a good idea. Perhaps you could talk to the head or key secretary of the sleep lab and strike a deal. (they usually charge more because many insurance companies only pay a fraction charged.)

[guest]

sorry jumpyowl like i said i am brand new to using a computer never had one untill a month ago so i am sorry to say i am jumping all over the place i do so much value your help and advice ya just need to go slow with me and by the way what is a thread????? there are no stupied questions RIGHT.........thank you ever so much Lyndarae