third week of WED/RLS symptoms
Posted: Tue Dec 13, 2016 8:18 am
Thanks for the introduction. I was so busy scouring the other forums for information that it took me a while to notice the "new members" posts.
I haven't had a chance to see a doctor or get an actual diagnosis yet, but here's what I've been dealing with.
I'm 41 and have had panic disorder ever since age 12 or 13. At 20 I suffered a pinched nerve or bulging disc in my neck that has recurred to some degree every couple of years since then. I mention this because I've often wondered whether it could be responsible for the occasional pain and numbness I've noticed in my hands and feet over the years.
I've suspected for a long time that I had something like fibromyalgia, as I developed a kind of low level full-body nervous system pain during my mid-20s. This has never officially been diagnosed but it's gotten steadily worse as I've gotten older.
At 30 I developed a dull headache that has never gone away since. I had an MRI but it didn't show anything unusual.
Before last month, the only experience I ever had that I'd describe as being similar to RLS was around five years ago. While sitting in the evenings I'd begin to have an uncomfortable sensation in my arms that made me want to get up and stretch. This lasted for around two weeks and then went away completely.
A little over a year ago I began taking Keppra for reactive tinnitus/hyperacusis. I took it sporadically and not for much more than two months at a time since it starts to affect my stress level and negatively impact my sleep at around the two-month mark. The first few days of withdrawal are rough though. On November 11th I decided to try taking 15 mg of Remeron in the hope that it would help me sleep, and this is where the real trouble started.
That night I woke up with horrific RLS in my arms and shoulders and was extremely drowsy from the Remeron the next day. At first I though I was fine and over the following days, I had only minor evening RLS symptoms in my arms. I seemed to be back to normal until I woke up on November 26th and everything went wrong. I somehow managed to bang my ulnar nerve on my hip bone while rolling over in bed and the pain didn't go away for half an hour. After that, the first thing I noticed was how much my legs hurt. That day and the following day I had pain and discomfort in both my legs and my arms. At least at that point it wasn't preventing me from sleeping but of course that all changed on the night of the 28th, when I began to have what I understand are more typical nighttime RLS symptoms.
The next day I read that some patients have successfully treated RLS with Keppra and started taking it again at 500 mg. I also read about melatonin being a potential trigger and discontinued it after taking 1 - 2 mg every night for the last 5 years. I'm also taking a multivitamin, iron supplements, magnesium, B and D vitamins, and guaifenesin. In the 17 days since this all started though the symptoms haven't improved and still cause significant pain and discomfort throughout the day and prevent me from sleeping more than a few hours at night.
I keep wondering what triggered it-- just the Remeron? Going off Keppra earlier that month? The fact that I didn't exercise for 48 hours before the 26th, which is unusual for me? Could the ulnar nerve injury have anything to do with it? That seems impossible but it is a weird coincidence that it happened right before I noticed the full-blown pain in my legs, and I have woken up with my pinky finger on that hand dead asleep a few times in the last two weeks.
I have an appointment with a primary care doctor in a week and one with a neurologist a few days after that. I have a copy of the WED medical bulletin printed out and ready to go. I'm a little desperate for any kind of relief, even if at this stage it's just from benzos or sedatives rather than GABA analogues or DAs. Any med recommendations or suggestions as to what to request from the doctor, other than the obvious blood iron test?
I'm in Pittsburgh, PA if by any chance anyone happens to know of a good doctor for this condition here.
I haven't had a chance to see a doctor or get an actual diagnosis yet, but here's what I've been dealing with.
I'm 41 and have had panic disorder ever since age 12 or 13. At 20 I suffered a pinched nerve or bulging disc in my neck that has recurred to some degree every couple of years since then. I mention this because I've often wondered whether it could be responsible for the occasional pain and numbness I've noticed in my hands and feet over the years.
I've suspected for a long time that I had something like fibromyalgia, as I developed a kind of low level full-body nervous system pain during my mid-20s. This has never officially been diagnosed but it's gotten steadily worse as I've gotten older.
At 30 I developed a dull headache that has never gone away since. I had an MRI but it didn't show anything unusual.
Before last month, the only experience I ever had that I'd describe as being similar to RLS was around five years ago. While sitting in the evenings I'd begin to have an uncomfortable sensation in my arms that made me want to get up and stretch. This lasted for around two weeks and then went away completely.
A little over a year ago I began taking Keppra for reactive tinnitus/hyperacusis. I took it sporadically and not for much more than two months at a time since it starts to affect my stress level and negatively impact my sleep at around the two-month mark. The first few days of withdrawal are rough though. On November 11th I decided to try taking 15 mg of Remeron in the hope that it would help me sleep, and this is where the real trouble started.
That night I woke up with horrific RLS in my arms and shoulders and was extremely drowsy from the Remeron the next day. At first I though I was fine and over the following days, I had only minor evening RLS symptoms in my arms. I seemed to be back to normal until I woke up on November 26th and everything went wrong. I somehow managed to bang my ulnar nerve on my hip bone while rolling over in bed and the pain didn't go away for half an hour. After that, the first thing I noticed was how much my legs hurt. That day and the following day I had pain and discomfort in both my legs and my arms. At least at that point it wasn't preventing me from sleeping but of course that all changed on the night of the 28th, when I began to have what I understand are more typical nighttime RLS symptoms.
The next day I read that some patients have successfully treated RLS with Keppra and started taking it again at 500 mg. I also read about melatonin being a potential trigger and discontinued it after taking 1 - 2 mg every night for the last 5 years. I'm also taking a multivitamin, iron supplements, magnesium, B and D vitamins, and guaifenesin. In the 17 days since this all started though the symptoms haven't improved and still cause significant pain and discomfort throughout the day and prevent me from sleeping more than a few hours at night.
I keep wondering what triggered it-- just the Remeron? Going off Keppra earlier that month? The fact that I didn't exercise for 48 hours before the 26th, which is unusual for me? Could the ulnar nerve injury have anything to do with it? That seems impossible but it is a weird coincidence that it happened right before I noticed the full-blown pain in my legs, and I have woken up with my pinky finger on that hand dead asleep a few times in the last two weeks.
I have an appointment with a primary care doctor in a week and one with a neurologist a few days after that. I have a copy of the WED medical bulletin printed out and ready to go. I'm a little desperate for any kind of relief, even if at this stage it's just from benzos or sedatives rather than GABA analogues or DAs. Any med recommendations or suggestions as to what to request from the doctor, other than the obvious blood iron test?
I'm in Pittsburgh, PA if by any chance anyone happens to know of a good doctor for this condition here.