Head felt enormous pain as if it were... - Restless Legs Syn...

Restless Legs Syndrome

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Head felt enormous pain as if it were going to explode. Particularly at the back base of the skull

Lorkadm profile image
12 Replies

I’ve suffered from RLS for years and finally after trying home remedies my doctor did prescribe that medication. I was afraid to take it a second time after the first side effect

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Lorkadm profile image
Lorkadm
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12 Replies
Madlegs1 profile image
Madlegs1

Could you elaborate a little, please.?

I think I blinked somewhere?😝

Lorkadm profile image
Lorkadm in reply to Madlegs1

I have RSL and GP prescribed medication in which I gave review. I do take an anti depressant which I’m wondering has a side effect giving me RLS

Madlegs1 profile image
Madlegs1 in reply to Lorkadm

In general, antidepressants are not good for RLS.

Which one are you on?

What other meds are you on?

Lorkadm profile image
Lorkadm in reply to Madlegs1

Yes I see I may have RSL as a side effect of paroxetine. I’ve been taking it for as long as I’ve had RSL. I’m going to see if it’s a side effect on the drug paperwork

ChrisColumbus profile image
ChrisColumbus in reply to Lorkadm

To jump in here, RLS is rarely listed as a side effect on patient information leaflets, and few doctors know much if anything about RLS.

The following list of Medications To Avoid comes from the RLS-UK website:

"A number of medications can make RLS worse. In particular, anti-nausea drugs and sedating antihistamines can block the brain’s dopamine receptors, increasing the symptoms of restless legs. Antidepressants that increase serotonin and antipsychotic medications can also aggravate the condition. Let your doctor know if your restless legs symptoms worsen after you take a new medication. A change in dosage or a change to a different medication may help. Below we have listed a number of medications which our forum users suggested made their RLS worse. Please note that this list is not exhaustive and while we have been advised that they have made RLS symptoms worse for some people, this may not be the case for you.

​In particular, anti nausea drugs and sedating anti histamines can block the brains' dopamine receptors, increasing the symptoms of restless legs. Anything containing pseudoephrine or phenylephrine should be avoided.

​Cold and Flu remedies and Anti-Histamines:

Common culprits include: Night Nurse, Day Nurse, Nytol, Actifed, Avamys, Benadryl (Acrivastine), Chlorphenamine ( Piriton), Contac, Coricidin, Fluticasone, Rhinolast (Azelastine hydrochloride), Sinutab, Sudafed.

Note that many cough syrups may contain antihistamines, especially if they are recommended for cold or flu symptoms. Always try to choose non-drowsy options.

Anti-depressants:

Many people living with RLS also live with depression and consequently are prescribed anti-depression medication. RLS is also common in two conditions that often co-occur with depression: ADHD and PTSD. However some anti-depressants can actually make RLS symptoms worse. If you are prescribed anti-depressants and live with RLS, we recommend you monitor your RLS symptoms to see if your symptoms worsen after starting anti-depressant medication. If so, speak to your medical practitioner to see if you can be prescribed an alternative medication. Trazodone and Bupropion are both RLS safe alternatives.

​Anti-psychotics: Most anti psychotics worsen RLS.

​Selective Serotonin-Reuptake Inhibitors (SSRIs) and Serotonin and Norepineephrine Reuptake Inhibitors (SNRIs):

Citalopram (Cipramil), Duloxetine (Cymbalta), Venlafexine (Efexor), Escitalopram (Cipralex), Paroxetine (Paxil, Seroxat), Fluoxetine (Prozac), Nefazodone (Serzone, Dutonin, Nefadar), Sertraline ( Zoloft, Lustral), Dapoxetine (Priligy), Fluvoxamine (Faverin), Vortioxetine (Brintellix).

​Tricyclic medications:

Amitriptyline (Tryptizol), Clomipramine (Anafranil, Imipramine (Tofranil), Lofepramine (Gamanil), Nortryptiline (Allegron), Amoxapine, Desipramine (Norpramin), Doxepin, Trimipramine, Imipramine, Mirtazapine ( Zispin), Protriptyline, as well as others, have been suggested as making the symptoms of RLS worse.

Antacids:

Most Proton Pump Inhibitors worsen RLS. Omeprazole, Lansoprazole, Pantoprazole, Rabeprazole, Esomeprazole.

​Anti Nauseates:

Discuss any anti nauseates with your doctors before surgery as many, including prochlorperazine or metoclopramide) will trigger RLS during and after surgery. Safe alternatives include Odansetron ( Zofran), domperidone or granisetron hydrochloride."

I hope that this helps.

ChrisColumbus profile image
ChrisColumbus

The only RLS medication that you mention in your Profile is ropinirole: is that what you took that you linked to the pain or something else? The pain you felt may be something else entirely: you should discuss with your doctor.

By the way, dopamine agonists - pramipexole, ropinirole and rotigotine - used to be first line treatments for RLS but no longer are amongst experts. Please clarify what you have taken/are taking for RLS - and any other meds you are taking - for further advice.

Lorkadm profile image
Lorkadm in reply to ChrisColumbus

Yes, it was Ripinirole

ChrisColumbus profile image
ChrisColumbus in reply to Lorkadm

1. Paroxetine (Paxil, Seroxat) which you also mention in your Profile is likely to trigger RLS: did your RLS start when you went on to the paroxetine? if you need to be on an antidepressant either trazodone or bupropion (Wellbutrin) is safer for potential RLS sufferers. If these other antidepressants are suitable for your condition just changing may stop your RLS.

2. Did the doctor give you a fasting full iron panel blood test - to include ferritin and transferrin saturation (TSAT) - before prescribing ropinirole? The blood test should be the first step before going on ANY drugs for RLS. If you've had a test post the numbers here for further advice - dont just accept a doctor's assurance that it's 'normal'; if you've not had a test, ask for one. Improving ferritin levels helps the majority of RLS sufferers.

3. IF after changing antidepressant and having had a blood test you still need medication for RLS you should NOT accept a prescription for ropinirole, pramipexole or rotigotine. First line treatment for RLS is now gabapentin or pregabalin.

Lorkadm profile image
Lorkadm in reply to ChrisColumbus

Amazing advice. I’m going to reach out to my Psychiatrist, bipolar doctor and see what they have to say.

ChrisColumbus profile image
ChrisColumbus

BTW are you on any other medications e.g. for your bipolar disorder or anything else? Many prescription and over-the-counter medications make RLS worse.

SueJohnson profile image
SueJohnson

Chris as given you some good advice. Let me elaborate further on what he said.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done as Chris said. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, 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. If they are not, post them here and we can give you some advice.

On Paroxetine, don't just stop it. You will need to wean off it, although if you are switching to wellbutrin or trazodone you might be able to switch directly. Consult your doctor on this. S/he might want you to taper down while simultaneously starting Wellbutrin or trazodone.

I gather you are not taking ropinirole now. Above all don't let your doctor prescribe pramipexole (mirapex) which is also a dopamine agonist like ropinirole. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).]

It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin).

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

As Chris said many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

Lorkadm profile image
Lorkadm in reply to SueJohnson

You have been a terrific help. I am definitely grateful for this site. Everything makes sense you’ve mentioned. Thank you so much.

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