Forgive me if I've missed the answer I'm looking for in other emails - I can't read them all - my schedule doesn't allow.
We weaned me completely off the DA's months ago. We started me on the gabapentin. I seemed to be fine at 900 mg for a while. I was taking 300 mg at 6:00 pm and 600 mg at 8:00 pm, going to bed at 10:00 pm with 50 mg. trazadone.
After about a month or so at this dose, we found that I was suddenly waking up around midnight kicking. I increased to 1,200 mg by taking 600 mg at both times instead. The kicking stopped. I had remembered that someone had said that while titrating up to find my needed dosage, this could happen. Then it started again, so I went to 1,500 mg. 300 mg at 6:00 pm, 600 mg at 800 pm and another 600 mg at 10:00 pm with the trazadone. I know you've said that the final dose should be 2 hours before bedtime as peak blood serum is 2 hours after taking it, but since the kicking was happening in the middle of the night (4 hours after my last dose/ a few hours after going to sleep), it seemed that's when it was needed so I thought I'd try it and it worked. After several weeks at this dose, I felt I had found my ideal dose. I was a happy girl.
Suddenly, last week, I began experiencing breakthrough kicking when I went to bed, right after taking my 3rd dose. Then a few days later, it was between the 2nd and 3rd dose. Then it was between the 1st and 2nd. What the hell is happening? I haven't experienced kicking while I was awake or at night for months.
Now, I just read some other posts commenting about diet and other mitigating factors, but I've been CLEANING UP MY DIET HARD CORE. I've almost completely eliminated sugar. I've eliminated all corn syrup, I've eliminated coffee. These 3 were major contributors to my RLS issues before. I've cleaned up my oils - only eating cold pressed oils and real butter. I'm not eating anything cooked in other oils such as french fries or potato chips, baked goods, etc. If I didn't make it from scratch with cold pressed oils, I'm not eating it. So where is this coming from??? From what I've read, I'm not augmenting. I shouldn't assume that I need to increase the dose. So what do I do?
You guys are absolutely amazing at seeing things I don't which is why I give as many details as I can to help you see as clearly as possible what is happening. Thank you in advance for your help. You guys are the best!
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Leeserann
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That is strange! Have you changed anything else? Started an OTC supplements, changed your exercise timing or intensity, started a new medicine, or stopped anything other than what you mentioned? What about your ferritin - did you ever bring it up?
All I can suggest is that gabapentin may not be for you.There are studies showing it isn't effective for many patients after they've augmented on DAs.
I was one of them.
If nothing else has changed and your serum ferritin is above 200ųg/L, you may need to consider a switch to a low dose opioid if it continues to cause breakthroughs.
So my hubby just started suboxone. I’m deathly afraid he will have the same horrible side effects as he did on methadone. Right now he started with 1/4 of a strip. Side effects? I’m really worried
Ok, you're both addressing iron which is a valid consideration. Ever since I learned that you're supposed to take it on an empty stomach and away from everything else, I never take it, I shutter to think what my iron is now. I am post-menopausal so no one can figure out why I continue to lose iron so badly. I guess I better figure it out because I've been wondering if it was the iron myself.
You should definitely get an up to date full iron panel blood test. Stop all iron supplements for 3 days beforehand.Iron infusions are now safe and effective for RLS caused by iron deficiency.
Raising serum ferritin above 200ųg/L ideally, seems to help the majority of RLS cases.
This is not in the book, so to say. I can fully understand you don’t want to increase any further I had something similar on ropinirole, but then, that is a DA. I hope you don’t grt any of the other augmentation signs, like spreading to other body parts. It seems indeed, like Joolsg is saying, gabapentin may not be for you.
All I can think of is that you need a very experienced RLS neurologist. Have you considered contacting dr Buchfuhrer? I assume he is still answering emails. Or write to dr Berkowski?
And do you currently have a good gp or neurologist who has been prescribing the gabapentin? Would s/he take advice from an expert? If so, you can also ask her/him to get in touch with Buchfuhrer or Berkowski or someone of tue same calibre.
Since the gabapentin did work for awhile, I do think it is not because you augmented on a DA. Let me give you my advice again:
To test your ferritin ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100.
Since it was 54 last time that was low and I doubt that it has improved so while you are waiting on having it tested you can start taking iron. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. You can also get ab iron infusion privately by paying for it, but it costs around £800.
Sue, my ferritin is fine (135) but my iron saturation is low (14%). Legs doing mostly okay despite reducing morphine. But are you saying I should be getting an iron infusion regardless?
Crohn's disease can lead to a functional iron deficiency due to inflammation which is reflected in your 14% TSAT which indicates that your body is not getting enough iron even though your ferritin is OK. I would suggest you discuss this with your doctor. I don't think you need an infusion but s/he may want you to take iron.
It's already stopped. Just from 2 days of iron supplementation, the kicking stopped. I didn't have to increase the gabapentin. I have figured out what I am going to do to get it into my diet faithfully. THANK YOU!! Sue, I printed your instructions, so they won't be forgotten or lost in the website as I don't know how to get back to them later. Again, you guys are the absolutely best support and resource. My life is completely different - so, so much better because of your help. Thank you.
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