Hair loss, twitchy toes and Pregablin - Restless Legs Syn...

Restless Legs Syndrome

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Hair loss, twitchy toes and Pregablin

Moonwalker1967 profile image
12 Replies

Hi all,

I am getting super frustrated and depressed:

a) I have started losing a lot of hair since taking Pregabalin 200 mg at about 8.00 pm for about 8 mths now.

b) I am waking up every night with restless legs ore twitching toes craving sweets. The uncontrollable twitching toes has started since I weaned off Pramipexole. The craving sweets I have always had. The toe twitching is morning or evening only and gets painful and can only stop by grabbing tight my toes. Wondering if this is another form of RLS?

c) Weight gain is another problem. Always needing a wee, too.

I am 56 years old and just had enough of this rubbish. I am still working and constantly feeling tired. My quality of life has been bad for years.

Can you please let me know if CBD oil will help. If so which strength and where to buy. My kids both have ADHD and vape CBD oil and they now manage to sleep with less period limp movement.

Thanks so much for your help. This group has been a life saver for me whe weaning off Pramipexole.

I get so much valuable information on here! :)

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Moonwalker1967
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12 Replies
Moonwalker1967 profile image
Moonwalker1967

PS: I forgot to mention constantly grinding my teeth as well day and night.

SueJohnson profile image
SueJohnson

Hair loss is a rare side effect of pregabalin. Weight gain is common because it increases your appetite. Toe twitching is a common side effect of RLS.

You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.

CBD oil can help. I don't know where to get it but others will chime in. However Healthspan 6.4mg. CBD capsules are available OTC from boots.

Joolsg profile image
Joolsg

I lost hair on both gabapentin and pregabalin. It's more common than listed because no one reports it via yellowcard scheme.It does settle after 3 or 4 months. Taking iron supplements and biotin and collagen will help.

Weight gain is a common side effect as these drugs increase appetite. Try to keep a food diary.

I can't comment on the teeth grinding. You may be more aware of it because pregabalin doesn't help as much as Pramipexole, so you waken more. Sqme with nighttime toilet trips.

It seems that pregabalin is not giving you sufficient cover. That can happen after years of damage on Pramipexole.

You may need to switch to a low dose opioid.

Moonwalker1967 profile image
Moonwalker1967

Thanks for your response, your help is very much appreciated! Very doubtful my GP (UK) will prescribe a low dose opioid on top of Pregabalin. Will see if I can get this of the chemist without prescription!? They do let you buy co-codamol (low dose) in the chemist.

Joolsg profile image
Joolsg in reply to Moonwalker1967

You can ask for a referral to a Sleep Clinic or knowledgeable neurologist who will arrange iron infusions and prescribe low dose opioids in place of pregabalin.

Moonwalker1967 profile image
Moonwalker1967 in reply to Joolsg

I have seen the neurologist who prescribed Pregabalin last August after weaning off Pramipexole. Will see if I can get my GP to refer me to a sleep clinic. I do snore at night, too according to my Huawei health app and it has recorded heavy snoring. Good job I sleep alone:) Thanks for your help!

PoorRichard profile image
PoorRichard in reply to Moonwalker1967

Fyi - heavy snoring is often a symptom of obstructive sleep apnea, which also affects quality of life. Mine is under control with the use of a CPAP device, prescribed by my sleep doctor. Takes some getting used to but worth it to me (and my wife).

SueJohnson profile image
SueJohnson

If you decide to come off pregabalin you will need to do so slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks.

Moonwalker1967 profile image
Moonwalker1967

Thanks, Sue! I will stay on it for now. Need to for work. If not on it, I won't get any sleep at all.

WideBody profile image
WideBody

Crap, I never knew hair loss and pregabalin were connected. I need to save every strand! I am so glad I no longer take that stuff.

I do know that hair loss, thinning hair is also a sign of iron deficiency. But I am sure you have checked that.

Amrob profile image
Amrob

I noticed hair loss with pregabalin. It's not an uncommon side effect.

Wavy67 profile image
Wavy67

I am not sure I can help with your specific question, but I came off Pramipexol because I found unless I had the tablets by a specific time, I became uncontrollably twitchy at night. I was also experiencing a frozen cold sensation in my toes when they were boiling hot. My consultant changed me to Rotigotine patches, which have stopped the twitches, and I have less of the cold sensation in my toes, although he thought the cause of that was more likely to be connected to haemochromatosis. (Not a condition usually associated with restless leg syndrome, but applicable to me.)

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