Insomnia and Gabapentin/Pregabalin

[Maximus01]

Hello everyone. This is my first post. Since I am suffering from Periodic Limb Movement Disorder PLMD (which was discovered during a sleep study) I have been doing a lot of research and now arrived at taking 600 mg of Gabapentin taking it a couple of hours before bed. I am also taking 1 mg Lorazepam (also known as Ativan) which I have been taking for years. Would love to stop all of these meds but just have such difficulties getting decent sleep. In the morning, my bed covers are hanging down to the floor which shows me that I have been running marathons during the night. I never feel good or rested getting up, and it is a job getting myself into a good frame of mind to start the day. Just lost my sweet kitty cat which makes sleeping more difficult, and living alone is also not ideal. If there is anything someone in this community knows that is better than what I am taking already, I would sure love to hear any suggestions and thoughts. Much appreciated. I have already done tons of therapy and it gets to a point of beating a dead horse, and I don't think what is really going on has nothing to do with things that happened eons ago. It seems to have developed into a pattern. Supposedly, there really isn't anything that can heal PLMD.

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See my recent reply on medical weed to Blu genie, a little further down. That also helps your PMLD, and nightmares.

[Munroist]

Hi. It's a good idea to check your iron levels if you haven't already - raising iron is one the simplest ways to address RLS with almost no side effects, although not all people will benefit it helps around 60% so it's worth a go. Ferritin really needs to be over 100µg/L. You can raise this taking oral iron of which there are several sorts but iron bisglycinate is generally tolerated well by most people. Current advice is to take a dose every other day a couple of hours away from food with some vitamin C to help absorption.

[Maximus01 in reply to Munroist]

Thank you for the information, which I appreciate very much. My iron level is not even near 100. I have been taking iron supplement, however, not with vitamin C nor a couple of hrs away from food. This is good to know. Thanks.

[NeuroSeeker in reply to Maximus01]

Some of us (even many) won't get oral iron to the brain (where it needs to be), requiring a transfusion. My insurance doesn't consider it a treatment for RLS, but my hematologist was able to find plenty of other low-iron symptoms to get the go-ahead. It worked wonders. I went from a ferritin of 38 to 314; it's now 260, presumably because it's getting absorbed. Six month test was last week, so hopefully it'll actually get done this week!

Good luck. RLS and PLMD are tricky.

I will also second the cannabis suggestion, if it's legal where you live. Works when nothing else will.

[Munroist]

Hi, just to be clear it's the ferritin level which needs to be over 100. It's described in the mayo clinic algorithm which I think has already been posted. It looks like a long document but its more readable than it looks

mayoclinicproceedings.org/a...

[involuntarydancer]

Hi and welcome - lovely photo.

Is it just PLMD that you suffer from or RLS as well? Sadly, as I understand it, PLMD is even more difficult to treat than RLS.

Currently, US experts in RLS recommend an iron infusion as a first line of treatment but I don't know if this applies also to PLMD. If it does, given that your serum ferritin is less than 100, it would be worth trying to persuade your medical advisors to offer you a transfusion. It might be useful to track down the studies/recommendations of recognised experts to provide your primary care physician with some encouragement.

Non pharmaceutical options for RLS include yoga stretches and magnesium (both orally and as a rub). Many people report that a cup of coffee (decaffeinated works) helps with symptoms. For break-through symptoms tylenol - or other otc pain relieving tablets containing codeine - can help but should not be relied on long term because of the paracetemol content. Again, I don't know how much any of these help with PLMD but both RLS and PLMD do seem to be very idiosyncratic and it is definitely worth experimenting.

As you have probably gathered from your research, it is a good idea to avoid taking dopamine agonist type medication.

I'm so sorry about your cat. That loss can leave a big hole in your life.

[Maximus01 in reply to involuntarydancer]

Hi, with taking 600 mg Gabapentin 2 hrs before bed and 1m Lorazepam 1 hr before bed, one would think this would help me get a full night's sleep. But no such luck. I still have a hard time falling asleep (which is more due to a mind that won't shut up) and also wake up in the middle of the night. Sometimes tapping (EFT) helps me go back to sleep in the middle of the night--since I really don't want to take another Lorazepam. I am always careful about this. This will give me a stretch of 3-4 hrs. I am, however, still waking up way too early. After breakfast, sometimes I go back to bed with soothing meditation music to just get a little more relaxation before starting my day. I never get a good night's sleep and I always feel tired and foggy in the morning and all day following. Sometimes I do take a Tylenol or Aspirin in the middle of the night and it occasionally helps. I am seeing my doctor in two weeks and I will ask her about an iron infusion and do some more investigating. Thank you for your post.

[joker826]

Gabapentin did not work for me. I am now on Trazodone for 4 months & it works beautifully.

[NeuroSeeker in reply to joker826]

My doctor put me on 2400 mg of gabapentin after I had a bad Mirapex withdrawal. A year later and I am slow to speak and have difficulty recalling words. Drs fling that stuff around to easily.

[Maximus01]

Thank you Joker, I used Trazodone several years ago. It did not work well for me. Some meds work for some people better than others. I also note that as I am getting older, what has worked for me some years ago, no longer does. I used Lorazepam 1 mg together with Doxepin (which is an antidepressant sometimes also used for sleep), and this combination helped me for quite a few years.

[agapepilgrim]

Maximus01 so sorry to hear about your problems. I was diagnosed with serve PLMD (the periodic limb movement) by a Sleep Study. Gabapentin is the most common med for this, but I am allergic to that (causes bladder incontinence). The RT at the sleep clinic suggested I try a weighted blanket and CBD gummies (Ky has not approved THC for MS yet), so I bought a 20 lb weighted blanket (the weight is determined by personal weight-I'm 140) and now I feel like I am in a cocoon. I am claustrophobic and was worried about it causing problems, but I borrowed my grandson's blanket (it has greatly improved his sleep, age 25) and it was wonderful. The blanket does not move! No more sheets or blankets on the floor in the morning! I also found a store that sells the CBD/CDG gummies for sleep, and that has also helped. I now sleep for 8 hours, and even get some REM sleep (according to my Amazfit band). I thought it would make me hot, but I found a cotton one and the weight is

[Maximus01 in reply to agapepilgrim]

During the sleep study it was found that I also have sleep apnea. I had no idea. So this is in the works as far as a CPAP is concerned. It will need some getting used to. I am also still taking 600 mg Gabapentin (which is half of what I used to take), for the PLMD, which has gotten a bit better since my last study four years ago. Also am taking iron regularly which may help with the PLMD. Then of course, there is the regular insomnia. So I have several things going on. I have pretty much tried everything, so perhaps this time I am on the right track with my sleep doctor. If the CPAP machine doesn't work, there are other options. Thanks for your post and suggestions.

[agapepilgrim]

Hi, I typed an extensive reply, but touching the wrong key (!) made it disappear. So I will type the shortened version. I was diagnosed with severe PLMD a few months ago during a Sleep Study. The RT there gave me 2 suggestions: a weighted blanket and Delta 8 CBD gummies. I bought a 20 lb blanket (based on weight of 140) and found a local store for CBD Delta 8 (Ky has not approved THC). I am allergic to gabapentin - the most prescribed medicine for this. Also, I was advised to check my ferritin levels, complete iron study. Everything was normal. The weighted blanket does NOT slide off the bed like other covers. It has a cotton removeable cover, and the weight comes from tiny beads. It is surprisingly not hot! I hope these 2 suggestions help you. I am finally able to get REM sleep, also.