Driving me Crazy

[agpthng]

I just recently, in the past couple of months, started putting a heating pad between my calves while sitting at night or sleeping. I'm not sure it's helping or how it could but it's doing something at the moment.

[Polar Bear]

On a similar vein, I've been using a hot water bottle in a cosy cover and two wheat bags heated in the microwave.
Alas, they are of no benefit to me.

[sleepdancer2]

My heart breaks when I read stories like yours because I know all too well the misery. The first thing I'd like to say to you is that yes, there is hope that even after all these years and meds, it is still possible to find relief. You''ll get lots of information here about augmentation and ways others are dealing with it. I hope you will find what works for you.

I too took the dopamine agonists and augmented for years without anyone realizing what was going on. I too thought I'd surely go crazy. Way back in the late 90's the doctors wanted me to be tested for sleep apnea. I said the same thing you said. lol But I did let them test me as I was getting desperate, and I did have other symptoms of sleep apnea, like waking up coughing and choking, short of breath with my heart pounding, snoring, dreams about suffocating or drowning, and morning headaches. We were all surprised when my results showed no sleep apnea, just multitudes of limb movements (PLMD). So I went on the meds. At first they did quiet my legs, but I still felt awful. Eventually they did another sleep study on me and to nobody's surprise - I did have sleep apnea. They just couldn't diagnosis it before because I slept very little during the test, and that little sleep was so fragmented by my jumpy legs, the apnea didn't get a chance to rear its ugly head. If you have any symptoms of sleep apnea, you might want to consider following your doctor's advice. Treating my sleep apnea was one of the best things I ever did for myself. It was the beginning of getting my life back. The legs were harder to deal with.

What has worked well for the last 4 years has been using a TENS Unit before bedtime every night. (Off all the leg meds.) Others I've talked with have tried it and found it to be helpful, then again, there are others who tried but did not get relief from it. I had been prescribed the device for back pain. Doctors are not yet prescribing it as a treatment for PLMD, but my experience has convinced me it should be. If it helps only a percentage of sufferers, it's worth a try. Only out of desperation did I persist and find what worked for me. When the TENS Unit quieted my legs, I was disappointed to find it did not fix what happens in my brain with the PLMD. When my legs jerks would begin at night, my brain would glitch like a stuck record, repeating one line of a song, one phrase from a sentence, etc. over and over until it was maddening. It has taken a long time of retraining and figuring out what best calms my brain. When the legs and brain are both at peace, there is the magic of sleep. Wonderful, deep, restorative sleep. Persevere until you find what restores that experience for yourself. It can happen. Can't guarantee that it will happen for you, but I hope you have hope knowing some do find relief.

[agpthng]

Sleepdancer 2 that was an interesting read this morning. Last night, for the second night, I put on Salanpas gel on both my calves, but last night I took half a dose after doing this. About a half hour later, I felt my brain trying to get my legs to move but they weren't. It was the weirdest thing, like you said my brain was a record that was skipping. I fought the movement, went to sleep and I think I slept through the night, don't remember so I must have. Tonight I'm going to put the Salanpas gel on both my calves and not take my Mirapex half of a dose and see if I can get through the night without anything. Wish me luck.

[agpthng]

About 2 weeks ago on a Friday night, I decided I was just not going to take my half a dose of mirapex! What a night it was, I was up all night long walking, pacing, edgy, gritting my teeth, oh my the worst night of my life. Never has been that bad even when it didn't work. The next day was just as bad. So my husband asks are you going to go for 2 nights in a row? That was my plan, that Friday night I was done! No More! But I said geez I don't know if I have it in me, I can't sit to read, play games, knit, watch tv nothing works, wine, shots of moonshine lol ( i was getting desperate!). So I'll be making an appointment back with the last neurologist that I saw not sure where it will go but I'm going back.

[Polar Bear]

It is so difficult to reduce/cut down/ cut out mirapex, just about impossible to stop it on your own.
Do you have Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. second edition. It's a great source of information and is worth using for discussion purposes.

Also, have you had your ferritin serum level checked, this is pretty important. It should be around 100, especially if you are taking a DA drug such as mirapex do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.

The main thing is to get a doctor's help and understanding.

[agpthng]

2 years ago it was 11 and the last time I had it checked it was near 50. No I don't have that book, you recommend I get it?

[Polar Bear]

Should you get the book - Absolutely.
I run the risk of boring anyone and everyone about how useful this book is - especially at doctor appointments.
You will see the book referred to on occasion in a thread, and also Dr B (Buchfuhrer) who is one of the co-authors.

[glfngrl]

Hi agp....

My sympathies are with you. I, too, have had RLS/PLMD since I was 22, am now 76. Since this thread has only focused on your meds, I would ask you this: Are you also following other protocols, along with your meds, which have proven beneficial to a lot of us? Specifically, dietary alterations, moderate daily exercise, and a combo of meds, rather than just one? For me, and others, a low dose DA coupled with low dosage opoids (or Tramadol), can be much more effective than higher doses of either type alone. As others have also suggested, d/cing the DA for a while, then going back to it a a lower level might also work. Taking meds, and not adjusting your lifestyle along with them, can make it harder for them to work. Regardless of the opinions and skepticism of non-RLSers, this disease can have a detrimental effect on every aspect of our lives - work, leisure, relationships, etc. Only those of us who suffer, know.

I almost hesitate to mention this, for fear that I might jinx it, but recently started using Magnesium Oil daily. Only change I have made, and my symptoms have become much easier to manage, even when the moon is full! Am now able to delay my afternoon dosage of Tramadol (50 mg.) for a couple of hours, and a few nights recently, had success taking my Requip as late as midnight, with no noticeable symptoms beforehand.....a miracle for me! (Until the mag oil, 5 minutes past either dosage time, and I would be in misery.) I mention this guardedly, as I have only been using the oil for about 3 weeks, but it might be worth a try for you.

Good luck, and hang in there; just don't let anyone talk you into taking more than 1 mg. of a DA per day. That is a set up for rebound and augmentation, for sure.

[agpthng]

The only thing I've ever done and been told to do is take this medication. The last neurologist/sleep doctor I went to did ask what my iron levels were and I said I don't know no one has ever asked or checked. They were borderline to transfusion low. She suggested I start taking iron tablets and I have been since. I don't know what those levels have increased to, the last time was in the 30's. I unfortunately haven't been given much to go on from any physician. My dosage is .25 mg of Myrapex and because I hate the fact that I have to take it (sometimes it doesn't even work making it worse), I start with half of a dose sometimes I can get away with it. But then there are those nights, alot recently when even a full dose does nothing, then all of a sudden I'm out like a light and wake up groggy and with a drugged feeling. I wish I had never started taking anything for it 10 years ago. In my reading, I've tried magnesium, didn't seem to help me personally. I usually drink a bottle of cold water before I go to bed a night, I read that that was beneficial, not sure if it is. Because of the way it makes me feel, I don't feel like doing any exercising, but I have spurts when I do 3 miles a day for a couple of months and then the legs or meds make me feel like I can't so I stop. I don't take any opiods. I go back again to the last neurologist I saw next week. Im prepared for her to try and pressure me to do a sleep study as she did before. Honestly, I don't see that being a benefit at this stage as I don't sleep and when I do it's a drugged sleep. It would be nice to sleep as my husband does and everyone else, without any aids! I think the worst part is you take the meds believing they are going to work and then they don't. If I've reached my maximum dose I won't take anymore as I can feel my heart race if I've taken more than I should. Did that once, and once is enough.

[Polar Bear]

agp - Does your neurologist consider herself experienced in the treatment of WED/RLS? Has she mentioned other medications?

As suggested by glf - a combo of medications can make all the difference, adding a low dose of one of the anti seizure medications or low dose tramadol means the symptoms are being tackled from more than one 'angle'.

Did you ever get the book as previously mentioned, this contains excellent guidence for the treatment of symptoms. You can familiarise yourself, and then take the book with you to neurologist appointment and be able to discuss the different medications from an informed stance.

[agpthng]

I haven't gotten the book yet, I plan on ordering it before my appointment, hopefully amazon has it. Wish it was in the ebook format. My neurologoist is listed as specializing in RLS/sleep disorders, no she didn't recommend any other meds as she was pushing sleep study.

[Polar Bear]

IMHO -- I would prefer the paper version of the book, easier to make notes on it, use post-its, and to photocopy a piece of particular information for doc.
Just my own personal view.

Again just my own view - but I think it is sometimes necessary to be pro-active with a doctor... show that we expect knowledge/guidance/treatment/results.

[agpthng]

I know I agree with being proactive. That's what I'm trying to do. But the digital version fits with the way I'm wired. But that's ok - book is ordered should arrive tomorrow.

[Polar Bear]

I normally use digital books.....