On my third medication--need advice!

[jadedsmile1314]

Although I have had rls symptoms for as long as I can remember(misdiagnosed as a small child), I was just recently diagnosed when I finally sought treatment. It has gotten to the point where I feel as though I am living my life in a blur--mostly from lack of sleep. My primary doc sent me to a neurologist and that dr. gave me a script for Requip. Didn't work. He then put me on Mirapex and upped the dose to the point where I took myself off of it since I felt like a space cadet. I went back to the neurologist and he gave me a new med--Neurontin. I have yet to take it because I am worried it will have the same side effects as the Mirapex. Has anyone had success with this med? What have been the side effects? The kicks are driving me mad at night. Days fly by in a haze. I'm trying to get some semblance of a normal life and any suggestions people can provide would be greatly appreciated.

[Polar Bear]

Sorry you are having difficulty finding a medication that will help you.
Neurontin is an anti seizure medication and is a different class of drug than mirapex and requip.
I haven't used this type of medication but there are many other members who have done so and it shouldn't be long until one of them responds to your post.

You will read the side effects listed on the leaflet that should have come with the medication, or just google it.
Just remember that it is always alarming to read the numerous side effects of any medication, and generally any side effects can be dealt with and hopefully are worth tolerating to be getting help with your rls/wed.

Here is an extract about Neurontin.

Neurontin (Gabapentin)
This is the most used and possibly the most effective of the anti-convulsant medications used for treating RLS. In one study, all of the 16 patients got 50-100% relief of their RLS symptoms which was sustained. Two patients (with familial RLS) who had previously not responded to any other treatment got significant improvement with Neurontin. There was no problem with rebound as noted with Sinemet.

Neurontin may work best for RLS sufferers who have pain (painful neuropathy) associated with their symptoms.

The dose of Neurontin varies from 300-2000 mg per day, with the average dose being 800-900 mg. Neurontin should be started one 300 mg capsule at bedtime. Another 300 mg capsule can be added as needed every few days. The usual bedtime dose is between 300-800 mg. For severe RLS, a morning and afternoon dose can be added. Neurontin comes in 100 mg, 300 mg and 400 mg capsules.In our experience, the response to Neurontin can be quite variable, but many RLS patients have achieved benefit from this drug with minimal side effects. The effectiveness of this medication often diminishes after 1-2 years. In one study, the average dose of Neurontin needed was about 1800 mg per day.

Side effects are less common and usually transient when treating RLS at low doses of the drug. With higher doses, sleepiness and dizziness may occur. The common side effects from the PDR are listed below:

The most commonly observed adverse events associated with the use of Neurontin® in combination with other anti-epileptic drugs, not seen at an equivalent frequency among placebo-treated patients, were somnolence, dizziness, ataxia, fatigue, and nystagmus.

Approximately 7% of the 2074 individuals who received Neurontin® in pre-marketing clinical trials discontinued treatment because of an adverse event. The adverse events most commonly associated with withdrawal were somnolence (1.2%), ataxia (0.8%), fatigue (0.6%), nausea and/or vomiting (0.6%), and dizziness (0.6%).

I understand that the new Horizant drug (which is also an anti seizure drug0 is reckoned to be more effective than Neurontin, tho of course
everyone is different in what works for them.

Have you had your serum ferritin levels checked via a blood test. This is not a routine test and should be requested - 'normal' readings for most folks are not sufficient for someone suffering from wed and you should aim to have a level of around 100. This test shows the iron storage level .

[ViewsAskew]

So sorry you're having difficulty.

Per Neurontin - like any med for RLS/WED, it works for some....and not for others. It helps me, but not enough. Others it helps completely. And, others, not all all.

Did Mirapex work for you besides the space cadet qualities? I definitely found that I had odd mental issues (lack of focus, lucid dreams, weird dreams, and more) in the first couple weeks. These settled down over time, but never went away completely. They did reduce enough that I could function, though.

[jadedsmile1314]

@Polar Bear--the first thing the neurologist did was order blood work--numbers were fine. Thank you so much for your reply--any help navigating this has been a godsend. Your info was very helpful. And yes the side effects for any meds makes one really think about taking them. After years of suffering I suppose I should take the lesser of two evils.
@ ViewsAskew--the Mirapex was intolerable and did very little to help. I am thankful for your response in how it affected you--glad I am not the only one that thought they were losing it.
I still had the kicks and was awake every half hour on the hour while on it as well as spent the majority of the day in a fog (no mental focus, felt constantly tired, dizzy and sick to my stomach) I tried taking it at different times with the side effects not subsiding. I also developed the worst cramps in my legs out of nowhere while I was on it. The kicker was a day that I just about lost my mind on someone. I am normally a very patient person and usually rather reserved. The change in my personality and not being able to control my anger really pushed me to take my self off of it. It was either the med went or I was going to sign myself into a mental health facility. I've learned to live with the lack of sleep, but the mood changes were a whole different animal. I frightened myself.
I cannot stress enough how happy I am to have found this site and knowing I'm not the only one running marathons night after night. I will keep you all posted on how I make out with taking the new med. Let the trial by error begin.

[ViewsAskew]

I understand the mood changes! Mine were more depression oriented. Walking down the street and all the sudden crying. Feeling as if the world was going to end. I think I had something like 16 separate side effects with it - most brain/emotion oriented. The worst, though, was inability to orgasm....NOT FUN! I really hated being on it.

What dose were you on with the Mirapex? It's helpful to offer some ideas if we know that. We're not doctors, though...

Have you ever had to take painkillers for surgery, toothache, etc? If so, did they help? Many of us find by accident that opioids are effective. For me, some of the opioids are a very good match with my brain chemistry. I feel the most like my pre-horrible-WED self - energetic, organized, functional brain, compassionate, cheerful, etc. I lose many of those qualities when taking other drugs.

I think the good news is that the chances are good you'll find something that works. The potentially bad news is that it may require a bit of experimenting, may require combinations of things, etc. I counted recently - I've been on 18 drugs so far. Some alone, some in combination, some that I've quit at one time, only to try again later. I have been stable for a couple years, but recently have come to the end of this combo. Not sure what's next....but am relatively confident that we'll figure something out. It probably won't work forever. But, I know there's almost always something else to try.

And this is a great place to be when you're on that road.

[rthom]

I almost ended my marriage while on the mirapex and was a raving lunatic. Normally I never ever raise my voice. It is a strange drug.

[Polar Bear]

jaded smile: just to go back on your blood work. You say the numbers were fine.... but were they fine for your average person, or for an rls/wed sufferer. Please check if the blood work included a ferritin serum level test and if it did what was the level. This is important. And if the ferritin serum level test was not included, I suggest that you arrange to have it done.

[jadedsmile1314]

The neurologist was actually very thorough (surprised since most docs are the opposite). I was diagnosed by my primary doc and sent to the neurologist because the primary told me she was unable to treat it as effectively as he would. He ran the test for iron, magnesium and ferritin. I knew the iron would be fine--get tested every yr for anemia. He said considering that I have rls the other counts were okay. Many in my family have the same thing, just haven't gotten to the point where I am (at the end of my rope) and they refuse to be treated for it. As I had mentioned before I was misdiagnosed as a kid--my poor mother and father went through hell with me on a nightly basis. The neurologist did mention something about going for a sleep study--let's just hope they have the sheets tied down and nothing breakable nearby.

[Polar Bear]

jadedsmile: Its great that your blood tests came back with good readings.

Please forgive me for pressing on this point.... I can only say that if it was me I would want to know what the actual serum ferritin level was. Just in case there is the merest chance that what the doctor reckoned ok..... is actually up around the 100 which is preferred for those of us with rls/wed. And it is always good for us to know what our ferritin level is.

Again, I am just saying that I personally would be asking what my level was.
However, I have been known to be 'over thorough'

[jadedsmile1314]

"over thorough" is never a bad thing in my book As much info as I can get in regards to this is appreciated. Payment for this specialist is rather expensive and I rather not a dime be wasted.

[jadedsmile1314]

@ ViewsAskew--been on many pain meds. on and off for carpal tunnel/joint issues. Had to go off hydrocodone since the mix with the steroids had me itching til I bled. Tramadol was brutal--felt drunk 24/7 on it and hungover the next day. Codeine gives me the worst migraines. Percocet--geez what's my name and where am I again??? Now take ibuprofen til my stomach feels like it's turning inside out. Some days I feel like my body truly hates me. Seen many others that feel the same way. Apparently the rls is not enough to deal with. But, on the upside(and yup I'll take any possible) the carpal tunnel is definitely a good distraction from the rls--hehe. Strange when two parts of your body want the opposite thing. On hydrocodone by itself had that "drugged" out feeling and didn't accomplish much of anything, but slept better than any time I can remember. Half the time I'd fall asleep wherever I was and broke two pairs of expensive glasses that way. Hubby knows to take them off of me now, cover me up and just let me be. God bless him--he finally understands that I'll take uninterrupted sleep whenever possible. All of this leaves me unsure overall if they helped or if I was too knocked out from either the meds or pure exhaustion or overall miserable pain.

[Chipmunk]

The anti-seizure meds work for some and not others. You will need to work your way up with the gapapentin but you should know if it is helping by about 300-500 mgs. They also have pregabalin (Lyrica?) that works better for some than the gapapentin but I have heard of people gaining weight on it. I couldn't tolerate the gabapentin (caused me to retain water) but am now on Lamictal, which is another anti-seizure drug sometimes used for bipolar.

As far as trying medications, especially if you have to pay out of pocket for office visits, you might want to have the doctor write down where to go next if this drug doesn't work. I am, like PB, "over thorough" but it's also about keeping hope alive in that if the RX I leave the office with is a bust, that I don't have to suffer until I can next get an appointment. Even though I have been on the Lamictal for six months now, I still know that if I have to discontinue this, Lyrica is the next step, and then on to opiods. As long as I have more possibilities down the list, then I don't feel so desperate.

[debbluebird]

I'm sorry you are having such a terrible time. I wanted to give you the list of symptoms for sleep deprivation:
Constantly Tired, Lack of Concentration, Memory Loss, Irritability, Headaches, Appitetite Changes (either way), Social Problems. (Talking to people is almost impossible, as no one makes any sense to, and you apparently are not understood by those around you). Stress Intolerance. (Any type of stress, be it work related or personal, and you snap like a twig under the pressure)
For me Mirapex worked for many years until I started having Augmentation, Gabapention helps me, but I also now take Methadone, had trouble with nausea, but went away with tiime, (instead of the other Opioids), I felt horrible with Lyrica, plus gained 50 pounds, just started Tramadol (just one) now going to two. I find that if I start low, trying it out, then increase. Also start my Gabapentin early, 3pm, then 6pm. Start Methadone at 6pm, then at 9pm, start Tramadol at 9pm, then one later. This had to do with when they kicked in and how long they lasted for me. Hopes this helps. DEB

[jadedsmile1314]

Broke out in nasty hives from the Neurontin. Neuro Dr. said to give it a few days to calm down and then apparently try something else. No sure what that something else is. At this point I think a baseball bat would be cheaper and more effective. Sorry to vent, but I'm just so disgusted. It's going to be a long couple of days punching my legs into submission, doing flips and wondering how many muscles I'll pull each night. I'm definitely feeling like a lab rat. Again, I am so sorry to vent--I feel like I'm preaching to the choir. Need to compartmentalize this stuff or, yup I'll probably lose what's left of my head.
Thanks for the info Deb. Probably should not have put all my eggs in one basket as they say. What else can I say except at this point I am getting desperate and the makeup isn't coming close to covering the bags under my eyes. Family and friends tell me just about everyday that I look miserable. What can I say? I don't want to be on this road, why bring them along for the ride? Sleep deprivation seems to be just how it is now for me. Thankfully, after many years I have a strong tolerance for stress. Guess I can cling to that in the meantime. I've come to know(mainly from everyone on here) that there is many things to try and hope they work. But, I'm starting to lose hope and starting to just scream mercy.

[Polar Bear]

It took me a long time and a very understanding and cooperative GP to get to where I am today, so stick with it.
As for sleep, it has improved with the help of medication, but what really helped me was reaching retirement age..... not having to watch the clock and being able to sleep later in the morning is a great help. I really don't sleep before 3am and if I do it's only for an hour. Real sleep starts around 3 or 4 and sometimes I can sleep to 9 or 10, with perhaps a short awakening. For many years I worked full time on 3 or 4 hours sleep, on a good night.