Is there any advantage to putting off increasing my gabapentin?

[SueJohnson]

Up until about 6 weeks ago the 1500 gabapentin that I take completely controlled my restless legs. Then about once a week I got restless legs. I have exercises that I do that take about 10 minutes that allows me to go back to bed without symptoms. It seems pretty obvious to me that I will eventually need to increase to 1600 mg. Is there any advantage to putting this off or am I just suffering needlessly? By the way nothing changed 6 weeks ago - no new medicines, no change in what I ate, etc.

[LotteM]

I have done several times what you are doing - prolongating the agony. And telling myself that 10min of exercise and -in my case- half an hour, an hour or more of walking around and remaining awake was not too bad. And probably due to whatever I had been doing or not doing the previous day.

From this experience I would say you are putting yourself through unnecessary suffering. The resulting lowered quality sleep will in itself contribute to the increasing symptoms in the night. In your case I would now observe this for a few days to see if it settles, and then increase. If your doctor allows.

Also, I would keep a 'symptoms diary' and think about how far you would go with increasing the dose. Additionally, you may consider trying to lower the dose again after, say, several weeks of regained good sleep. Think of the next step to take in case this one really fails. And also what "really fails" means to you. We are all different and we differ in what we find bearable or unbearable or needless suffering.

Good luck. You are your best guide and advisor.

[SueJohnson in reply to LotteM]

Thank you. That was my feeling that I should go ahead. I have a teleconference with my doctor on January 1th, and he has been very good in the past with letting me increase my dose.

[Eryl]

There is a disadvantage that you'll need to increase the dose when your body gets used to it and all drugs have some side effect plus it's only treating the symptoms and not the cause. The cause is often inflammation of the nerves caused by your diet, mostly too many carbs which raise the blood sugar, oxidative stress from refined seed oils, or sensitivity to oxalates

[SueJohnson in reply to Eryl]

Nobody knows the cause of RLS. I will agree that for many people certain foods can trigger RLS especially sugar and carbs.

[Eryl in reply to SueJohnson]

Nobody? that's a very sweeping statement. I know that I've eliminated my rls with an anti inflammatory diet.

[SueJohnson in reply to Eryl]

You have eliminated the symptoms of RLS. RLS is an incurable disease. Using your logic, the cause of RLS for those who have eliminated the symptoms using gabapentin is a lack of gabapentin.

[Eryl in reply to SueJohnson]

RLS is not a disease, it's a syndrome (the clue's in the name). Gabapenthin is not a natural substance so rls is not caused by the lack of it, it does not cure the condition but suppresses the symptoms.

[SueJohnson in reply to Eryl]

Restless Legs Syndrome (RLS) is also known as Willis-Ekbom Disease. But you are right.It is not a disease. Googling the definitions I find "Disease usually refers to a health problem with a known cause", "By contrast, syndrome usually refers to a collection of related symptoms without a clear cause" Which proves my point that nobody know the cause of RLS.

😀

[auntiesioux]

I would not increase any of those meds prior to really needing them. I would check your blood levels, especially your pancreas if taking Gabapentin. It has been noticed to increase the incidents of pancreatic cancer.

[SueJohnson in reply to auntiesioux]

My blood levels were checked in August and were fine. In goggling pancreatic cancer and gabapentin, I found a NIH study published in The Permanente Journal that said: "Updated analyses show little if any evidence for carcinogenic effects of gabapentin." ncbi.nlm.nih.gov/pmc/articl... It is associated with pancreatic tumors in male Wistar rats, but thank goodness I am not a rat.

😀

[Marmaset]

Hello Sue,

You have my sympathies, only those who suffer with RLS will know how unbearable this condition is. First of all, have you had your Ferritin (Iron) levels checked? If your Ferritin levels are low then this can contribute to your RLS being severe. My Consultant has my levels checked every 6 months, and if my levels fall below, I think 75, then I am prescribed a course of Iron tablets for three months, and the increase in Iron does help considerably. You should check with your Consultant about this. Second, I take two 600mg Gabapentin morning and night, and I also take 2 x 88mg Pramipexole three times daily, and these for me have been life savers. However, I am on the full dosage of Pramipexole and I dread to think what will happen if and when my body becomes use to them. I have never been given exercises to do, so I found that interesting, however, when my RLS kicks in I don't think I could stay still long enough to do exercises. I do hope you find this information useful and, again, I would stress you have your Ferritin levels checked. Good luck.

[SueJohnson in reply to Marmaset]

My ferritin is 557. When I get restless legs at night I do the exercises for the leg involved as described under calf stretch and front thigh stretch at healthline.com/health/restl... In addition, I walk for about 3 to 4 minutes rolling the foot of the leg affected back and forth as I walk. It works every time although I may wake up later at night and have to do again. Actually on the calf stretch I don't hold it for 20 seconds, but instead do the exercise for 20 - 30 times. I also push my heel back before I lean forward. I, also move my leg to each side when it is stretched. On the thigh stretch, I only hold it for a few seconds, but then repeat 6 - 10 times. Hope this helps.

[Kayakcarole]

So sorry for your increased suffering. Dr Buchfuhrer told me when I started Gabapentin at 300mg that I could increase up to 1200 mg but not to increase above that. If 1200 mg failed to give adequate help then a different drug should be tried.

Has anyone experienced a significant improvement after switching to Gabapentin Enacarbil ( Horizant) over Regular Gabapentin?

Little things I do that help sometimes in the middle of the night are getting up and rubbing essential oil blend on my low back ( Nighttime Leg Calm from Nature’s Inventory, Hyland’s Restfull Legs pills ( 3 under my tongue) , a puff of cannabis from my vape pipe, stretching, a very hot bath.

I get no symptom relief from my weighted blanket but I like it anyway.

[SueJohnson in reply to Kayakcarole]

According to the Mayo Clinic Updated Guidance on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily". and rls.org mentions maximum doses of 3600 mg. Talking to my doctor today he is willing to increase it to 1600 mg. although I am going to hold off for awhile. I used Hyland’s Restfull Legs pills when my RLS started acting up in 2020 and they worked for a little while but then stopped working. I communicated with Dr Buchfuhrer recently to discuss dividing the doses for 1500 mg and he didn't say anything about that. Perhaps he was referring to pregabalin or Horizant. or perhaps there was a special reason affecting your case for him to say that. 1500 mg certainly works for me except for once a week.