More adventures with doctors

[ctravel12]

Hi Diane I know how you feel and glad that you feel the same way. The neat thing about this board is how you bond with people that you have never met, but know they are here for you no matter what.

You know Diane, until they walk in our shoes they will never understand but know that we are here for you and everyone else.

Never stop posting and that is for everyone. Love to hear from all of you. I am always checking this board and get such a wonderful feeling that I am able to help people.

Even if I can help just one then I have accomplished my goal and will continue to do.

Have a nice evening.

[D4]

I had a really bad night Sunday and even kept my husband up most of the night because I was in and out of bed so often. This is the first time my RLS has really affected his sleep that badly. Finally, around 3 am, he said he couldn't possibly sleep and was going to WalMart! Tonight (Weds) he said he's still so tired from only getting a couple hours of sleep Sunday. I said try that 100 days in a row and you'll get a little sample of how I feel EVERYDAY!

Diane

[becat]

AMEN SISTER!
I am sorry for the bad night though. It just gets old doesn't it.
I actually get jealous sometimes.
Silly but true.
I hope tonight you sleep well.
Lynne

[ctravel12]

Oh Diane I am so sorry about all of this. I know when I have a bad night, I go into our spare bedroom and either try to sleep or get up and walk around in that way my hubby does not hear me.

I hope that it gets better for you. Are you seeing a dr now, and if so, are you on any meds?

Please take care of yourself and let us know how you are doing.

[ViewsAskew]

Diane, when my DH and I were going through what you are, we couldn't take it anymore. His sleep was disturbed so often. . .we don't have a spare bedroom, nor did we want to do that. We'd both tried the couch and a blow up air mattress before deciding that we had to do something different. Even if we'd had a spare room, we didn't want to lose that intimacy of being together at night.

We thought long and hard about options and came up with two that seemed reasonable: two twin beds put together to make a king (but they would be separate mattresses, so my movements wouldn't bother him) or a memory foam mattress (they isolate movement extremely well).

We went out an spent a whole afternoon laying on mattresses. We'd both be in the bed with me alternating kicking and getting up and down so he could assess how much movement. We decided on the Temperpedic. It came in three thicknesses and the middle one worked great for us. It was expensive, but he's never been awakened by my movements since. And, it's quite comfy, too.

[stitch]

We have been where you all seem to be now with the sleeping problems and keeping your partner awake. So when we got married we got twin beds and still many nites i sleep in the spear bedroom. But we hated the twin beds.

Where I got my meds for the RLS and was sleeping all nite we got a king size bed after we moved to the beach or near it any way. That worked great and sometimes he would count how often I would kick and it was every 20 seconds. But after the back surgery I had to sleep on my back and the bed was just not good for that.

So now we have a kize size bed in the spare room and we got the sleep number bed but haven't been all that happy with it. So last week we got a temperpedic mattress cover so I guess we got it all covered now and it's a soft place to sleep.

It is really great if you can stay in the same bed with the dog also and it works. I can't see the words any more so it's time for the kiing size bed.

And like everyone has said this is a great support group, I just wish we could all get a chat room for the ones we know and the others to. I never seem to catch everyone when they are chatting. Good nite and hugs., Jeannie

[ctravel12]

Jeanniie you talked about the chat room. We meet every Monday night. I am on pacific time as we never change time. I live in Az so right now it is 7:15 am. Am not too sure if you are two or three hours ahead of us. We try to meet around 7:30 pm my time in that way it is only two or three hours difference for the others

If this works, please come on the chat line on Monday nights. I have mentioned this to alot and some it may be too late, so let me know what time you can make it and we can all work around it.

I know you were on the chat line once or twice Jeannie. Hope to see you again and everyone else. It is a good way to talk about alot of stuff and also is a way to get alot of support right then.

[stitch]

Charlene,

Thank you for that information, I didn't know you only met 1 nite a week. I guess that would be about 10:30PM east coast time.

I just got back from seeing the pain dr. and he got upset with me for taking more of my pain meds then he has given. He told me that if I took more then I was suspose he would drop me.

He also told me that I have some kind of after back surgery syndrome which means there is nothing more they can do for me. So he wants me to go back to the pain dr I was seeing here to talk about and have the stimulator put in me or go to Baltimore to see the dr he knows. I don't know about going to the pain dr here because I don't know on what terms we are.

Anyway what I have decided to do is continue physical therapy and he upped the Lyrica to 300mg.s aday and I will go off the pain meds. And in all of this I hope the RLS don't act up.

They have been really bad and I have been waking up at 4am in the morning after 3 hrs sleep. And the RLS last for about 2/3 hrs. But last nite went to bed at 12 and did not move until 8 this morning. I wish I know what I did lol. I guess I could say I have been without the RLS for 2 days now. I will go off the pain meds slow not just stop them.

Almost time for PT so I will keep you all posted, Jeannie

[ctravel12]

Hi Jeannie I am sorry when I said we only meet on Mnday nights. Only some can do Monday, but if you want to meet on another night let me know and I will work around your schedule.

I am glad that you are going off the meds slowly. It is never good to go off of them cold turkey.

I am so glad that you slept a full 8 hrs last night. Good for you.

Have a nice day and will talk to you at another time.

[D4]

This was the first time my problems really affected hubby's sleeping. I actually think it's sort of funny because he got a very tiny taste of what I live with on a daily basis. I have contemplated a Temperpedic bed for a while because I have back problems. (Although I have to say that because of the RLS meds I'm on, my back and neck don't bother me anymore!)

Someone asked what meds I'm on. Currently Vicodin and Clonazapam. I've tried a lot of different meds since being diagnosed a year ago. This hasn't been fun! I somehow went in late January from waking up every hour and/or sleeping just a few hours a night to sleeping almost all the time. It doesn't matter how much or how little sleep I get because I still feel totally sleep deprived. I sleep almost all my non-working hours.

The good news is in February, my neurologist said he didn't understand why I'm not responding to any meds. He ordered a brain and brain stem MRI, more blood work, and referred me to Mayo Clinic. The bad news is that I have to wait until early May to see a neurologist in the Mayo Clinic Sleep Disorder Center. I'll be devastated if Mayo can't help me have a better quality of life.

[ctravel12]

Hi Diane How are the meds working for you now that you are taking?

I am glad that you are going to the Mayo clinic and know that you will not be disappointed. I went to the Mayo clinic when I went for a second opinion for my kidneys and was very pleased with the dr.

I know that May sounds like a long ways off, but before you know it will be upon you before you know it. Hang in there and keeping everyone in my prayers. We are a wonderful family and glad to have you as part of the family.

[D4]

Hi Diane How are the meds working for you now that you are taking?

These meds are definitely not the right combination for me, Charlene. The Vicodin is great - it takes away all the weird, horrible feelings in my legs. I've been on it 3 full months. I've been on the Clonazepam for two full months and I was on Rozerem for a month before that.

Even though these are clearly not the right meds, I'm stuck until Mayo. My neurologist said to stay on them and a Mayo doctor reviewed my records and said to stay on them until they change them.

I'm not functioning well. For at least 6 weeks, I've been going into work 1-2 hours late each day because I'm truly unable to get up and function. (My doctor wrote a note, so my employer is understanding.) Staying later isn't an option because I'm so dead tired by the end of the day, that I have to go home and have a 4 hour coma nap. Hubby struggles to wake me up and then I'm up for an hour or so before bed.

A couple weeks ago, I realized this sleep deprivation (even though I sleep a ton) had really gotten to me and I felt depressed. I went to a psychologist and talking to him really helped.

I live in the Midwest and the grass is getting greener every day which is nice, but I wonder what happened to the last 4-5 months? I've been existing, but not really living my life if that makes any sense. This is the pits.

Thanks for your support. Only people on this board know what this feels like.

[stitch]

Hi Diane,

Yes I know what you are going through. It sound like you are on some pretty heavy duty meds. I have taken clonapen since 85 and 2mg's at nite and I am fine during the day. If my legs don't bother me during the nite then I sleep great and wake up with no drug hang over.

I got REALLY told by my pain doctor that if I take more oxy then he has told me to he will no longer be my doctor. Hubby was upset because he was saying this while other people could hear.

I don't want pain meds anyway, I want what helps my back and he did up the Lyrica from 50mg's to 100mg's 3 x's a day. He want's me off the requip but I am still hanging on to 1 or 2 aday.

Diane when the meds are not working it can really be bad. I am going through some big time depression from changing my antidepression. But I am working my way back to the olds ones I was on. Too many changes at 1 time is not good and that is what has happened to me.

I am luckly I don't have to go to work, I'm retired now but I have been where you are and it's just terrible.

I am much older then most everyone here 70 yrs old and had the 4 back surgeries. The dr told me today there is nothing they can do for my back pain. Right now I am going to water PT and I will work my way back up the ladder. I have done it before. I really need to get my RLS back under control again. I know it's hard for you with all the wrong meds and wanting to sleep all the time. Some of the sleeping all the time is depression. I really hope they can help you at the Mayo Clinic.

My dr told me the last thing for me is a stimulator implanted into me to help with my back pain. So we are thinking on that one now.

And I have found this board to be great to sound off and you all understand what I am going through just like we understand what you are going through.

Hang in there Diane, we all seem to be doing the same thing. Take care all and I hope this weekend will be better then last weekend. Jeannie

[ctravel12]

Hi Diane So sorry that the coctail of meds that you are taken is not working for you. My dr also gave me rozerem and it did not work. It was like drinking a glass of water that is the effect it had on me.

I know sleep deprivation is the pits and hope that you are able to get some relief. I am glad that you were able to talk to a dr and made you feel better.

I am like Jeannie, I am also retired but retired or working and not sleeping properly is miserable. We have all walked that road and it sure gets bumpy at times.

This is a wonderful board as we all know what each person is going through. Until someone walks in your shoes they have no idea what we are going through.

[becat]

D4, I so understand what you mean about where did the time go and sleep but not rested, uuufffaaaaaaa.

I was that way for years and people don't understand that I have no concept of time. Whether it's a day or a week, my time is normally non-stop.....I would be able to tell you events, but not dates.

I hate it too, makes me feel a bit stupid when I know I am not...but to miss you family members birthdays, because you have no concept that a week has gone by. Ugh!

I have been bowling for the past 9-10 years ( who knows unless I ask) and I am getting too embarrassed to call and say "I won't be there AGAIN cause I haven't gone to bed yet." It's embarrassing and I feel like a little kid that has to be told when to do things.

My brain just stops after a while. Like you getting the meds right is now easy. Too much scares me, too little is not enough to function.

It can happen D. Hang in there and know that we're here for you anytime.
Prayers for You are in the moon.

Hi Miss Stitch.
I hope that stimulator works wonders for you. And the water PT should hopefully feel good, less pressure on the body.
I'm lucky too, not having to work out of the house. I have my own schedule, thankfully.
Hugs and healing for us all,
Lynne