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Restless Legs Syndrome

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rsoular profile image
13 Replies

So, question for all of you:

Background: I have been taking 2.5mg of Ambien for the last ten years, and only gradually have become aware that my insomnia is being caused my my RLS. Knowing that Ambien interrupts natural sleep and can cause dementia among other things, I have stopped taking it and I'm pursuing all the possible pathways to sleep well but my sleep has been a disaster only being able to fall asleep by 3 am with a 5:30am get up for work. For now I have an appt for a ferritin lab and sleep study and I'm in the middle of trying Calm, Chinese herbs and accupuncture, magnesium of all types, Valarian, CBD oil, Tens machine, I'm on the low FODMAP elimination diet and I have squeeky clean sleep hygiene (no screens, naps, caffeine, alcohol, consistent bedtime, cool dark room) . None of this has changed my insomnia so far, but I'm nowhere near finished. Meanwhile my GP has called in a prescription for Nuepro that I could start taking, knowing the slough of side effects and probability of augmentation. The question is: if all along 2.5 mg Ambien allows me to "sleep" great and be fully functional, isn't this a pretty good outcome considering? I'd love for some feedback in my thinking...

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rsoular
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13 Replies
Madlegs1 profile image
Madlegs1

Ambien is for short term use and also is a short half life med, suitable for getting one actually to sleep.

Using it for ten years seems excessive.

However, you have now stopped taking it and your body is screaming blue murder at your withholding it. This is called withdrawal-- of which rls is one of the major symptoms, along with-- surprise- insomnia, of all things.

This is going to be a long road, and you should probably investigate using opiates such as Tramadol or oxycontin to get you through this period. However, you will still suffer from withdrawals, eventually,no matter which way you go.

Have a look at Matt Finch site for advice on coping with withdrawal.

Good luck.

rsoular profile image
rsoular in reply toMadlegs1

Thank you for your response. I got my ferritin level back today and it's 13.5. Is my next step asking my doctor for an infusion? Also, I have put in an order for Relaxis.

Madlegs1 profile image
Madlegs1 in reply torsoular

Are you sure that's a ferritin result? Sounds more like an hgb reading.

What are your symptoms, regards the iron feficiency?

Only your doctor can advise re iron infusion-- it's not a simple do or don't---- you need to know a lot more blood information from tests. What are your other iron levels?

rsoular profile image
rsoular in reply toMadlegs1

Ferritin13.5 ng/mL3.0 - 151.0 ng/mL

WBC5.3 10*9/L4.5 - 11.0 10*9/L

RBC4.32 10*12/L4.00 - 5.20 10*12/L

HGB12.8 g/dL12.0 - 16.0 g/dL

HCT39.1 %36.0 - 46.0 %

MCV90.4 fL80.0 - 100.0 fL

MCH29.7 pg26.0 - 34.0 pg

MCHC32.8 g/dL31.0 - 37.0 g/dL

RDW12.8 %12.0 - 15.0 %

MPV6.8 fL7.0 - 10.0 fL

Platelet255 10*9/L150 - 440 10*9/L

Sodium141 mmol/L135 - 145 mmol/L

Potassium3.8 mmol/L3.5 - 5.0 mmol/L

Chloride104 mmol/L98 - 107 mmol/L

CO225.3 mmol/L22.0 - 30.0 mmol/L

BUN10 mg/dL7 - 21 mg/dL

Creatinine0.74 mg/dL0.60 - 1.00 mg/dL

BUN/Creatinine Ratio14

EGFR MDRD Non Af Amer>60 mL/min/1.73m2>=60 mL/min/1.73m2

EGFR MDRD Af Amer>60 mL/min/1.73m2>=60 mL/min/1.73m2

Anion Gap11.7 mmol/L9 - 15 mmol/L

Glucose97 mg/dL65 - 179 mg/dL

Calcium9.3 mg/dL8.5 - 10.2 mg/dL

Madlegs1 profile image
Madlegs1 in reply torsoular

That was quick!🤗

All the numbers seem to be ok , except for the low ferritin.

I don't think the ferritin is causing your rls-- considering the Ambien history.

But no harm in getting it up to around a 100.

You could do this by taking fer bisglycinate in form of Gentle Iron on empty stomach at night with vitc. An infusion can be very hard on some people ,and if you're not suffering from anemia, then I'd be slow to go that road. But others may have different ideas on this--- I'd welcome their input.

rsoular profile image
rsoular in reply toMadlegs1

What makes you think the low ferritin isn't causal? I know you explained that Ambien can cause the RLS, but I think I started taking Ambien because of RLS. Are you thinking that I have untreated insomnia and now the Ambien has caused the RLS? Can you explain your thinking so I can understand it completely and it will inform me moving forward? I'm planning on ordering Relaxis, I want to do everything to avoid the drug route if possible.

Madlegs1 profile image
Madlegs1 in reply torsoular

It's the withdrawal from the Ambien,that I'm thinking is causing the rls. You would have taken Ambien to get a night's sleep. But you would have become dependent on it.

Low ferritin in itself,is not necessarily a cause of rls. Nor is high ferritin a cure. ( I have had ferritin of 1400 with no let up on the rls-- purely due to withdrawal from opiates, post operation.)

The Relaxis pad has good reports and they offer a trial period ,as far as I know.

rsoular profile image
rsoular in reply toMadlegs1

Thanks so much for taking the time to address all this stuff.

Madlegs1 profile image
Madlegs1 in reply torsoular

You're very welcome.

If you have specific questions about iron- then the Iron Disorders Institute has a good site.

While low iron levels are not necessarily causative of rls it may be that they can render it symptomatic (eg in pregnancy). I would have thought it would be worth raising yours to see if symptoms improve. My symptoms improved a lot when I raised my serum ferritin. Low levels such as yours often come up readily with oral iron (gentle iron aka iron bisglycinate is recommended frequently on here). Unfortunately, often when they get higher the rate of increase slows or ceases but for now you could work with oral iron.

In relation to your original musing - should you return to ambien - my instinct is not to. However, it is hard to get a full picture of your rls.

Is it corrrct that you now think you started ambien because your sleep was disturbed due to rls?

Does that mean that while you were on ambien you didn’t have rls?

Are your current problems with insomnia due to rls (creepy/crawley and urge to move symptoms) or are they due to general restlessness/insomnia caused by withdrawal from ambien?

You don’t say how long since you discontinued ambien but I would be inclined to have low expectations for sleep improvement for a good while, bearing in mind how long you took it for.

Regrettably, I would expect this regardless of how good your sleep hygiene is. If your current problems are primarily caused by rls, it is unlikely that good sleep hygiene will help particularly. I have read endless accounts of people struggling with their rls and of what people have found helpful and I have yet to read a single person who recounts good sleep hygiene as of any assistance. Nor have I read of anyone who found that bad sleep hygiene exacerbated their rls although there are loads of other recorded exacerbants.

Btw, I have a relaxis pad. I ordered it for the same reason as you - to avoid the need for drugs. It does sometimes help - best if I go for a nap during the day which is relatively rare these days - but in no way does it take the place of drug treatments for my rather recalcitrant rls, unfortunately. I hope it works better for you.

gingerf21 profile image
gingerf21

People react differently to medications. For example, I can not take Ambien. It makes me stay awake all night. My sister told me to try Melatonin, so I tried 3 mg at night, and it didn't work for me. That was a while back. Out of desperation I bought some at 10 mg and tried it. Worked like a charm. I was asleep within 5-10 minutes. Somehow my sleep patterns have slowly gone back to normal, and I only take it now if I need it. However, if I wait until just before bedtime to take my ropineral, I have to wait until it kicks in before I feel remotely sleepy!

RestlessDebbie profile image
RestlessDebbie

If there is a drug that gives you relief, then you should use it.

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