Restless head syndrome

[Rkolln]

Can u have restless head syndrome where your head constantly moves in a rhythmic motion slowly back and forth? I do have it in the rest of my body. just don't know if I have it in my head or if it's something else .being that it's a rhythmic motion with no twitching or creepy crawly feeling like I have my legs.

[Joolsg]

Interesting. Are you taking dopamine agonists by any chance? Ropinirole (requip) or pramipexole (mirapex).

I ask because RLS can move to other body parts if you’re on DAs and suffering augmentation.

[Rkolln in reply to Joolsg]

No I tried ropinirole but made it worse in the morning. Also gave me unbearable insomnia. Just wanna know if that's a symptom.

[Joolsg in reply to Rkolln]

It’s a symptom if you’re suffering augmentation. I’ve never heard of it otherwise. If you’re not on any meds at all for RLS then I don’t know what would cause head to constantly move like that.

Have you discussed it with your doctors?

[Rkolln in reply to Joolsg]

Yes. I've had MRI's done. Bloodwork. Everything came back negative. I've been extremely depressed and suicidal. the shaking is driving me insane. They put me on lamictal and then came off and that it's when the shaking in head started. U think it might be augmentation from that. Lamictal made my rls worse.

[Joolsg in reply to Rkolln]

Please get in touch with your doctor as a matter of urgency.

Suicidal thoughts are reported on Lamictel and your doctor should have warned you about it AND asked relatives to keep an eye on you. Tremors have also been reported on this drug and it could explain your head tremors/shaking. Presumably you were put on Lamictel for epilepsy? What other meds are you taking at present and were you advised to stop taking lamictel by reducing slowly?

Both these serious side effects need to be notified to the UK Yellow card scheme.

ncbi.nlm.nih.gov/pmc/articl....

yellowcard.mhra.gov.uk/

[Rkolln in reply to Joolsg]

Yes im tapering lamictal

[Joolsg in reply to Rkolln]

Most anti depressant meds will worsen RLS. Were you prescribed the Lamictel for RLS or something else? I'm worried that your doctor doesn't seem to know how to treat your RLS effectively.

How long ago were you put on ropinirole? What other meds have you tried? What meds are you currently taking including anti depressants, anti histamines, beta blockers, cough and cold meds?

[Rkolln in reply to Joolsg]

Just diagnosed myself with rls. Dr's didn't know. Im going to see another neurologist soon. I just started cymbalta. I take unisom for sleep with trazadone and melatonin. I'm trying to get off lamictal. I've tried gabapentin and it was too much. on it for 2 weeks super sick and bad vertigo. tried pregabalin and started hallucinating. tried ropinirole and went 5 days without sleep. I need cymbalta because of severe depression and anxiety. but I feel my whole body jumping now. I've tried every other antidepressants and cymbalta was the only one that worked. but im pissed if it causes worsening of rls. I have rls now through my whole body non stop. Ruining my life. I don't sleep for days and then get a couple hours. I I take unisom to at least get some rest and if I don't take it. I don't sleep for a week or more. I've been to inpatient hospital for 3 weeks and they didn't know what to do with me. All I wanna do is die everyday. Sounds horrible but I'm done with the shaking and no meds work and I need medication to help. I've tried 25 different medications for the shaking and depression. All with horrible side effects. I cry all day thinking about never getting my life back. Dr's want to treat symptoms but don't know how if I can't take medication. What do I do now..

[Rkolln in reply to Rkolln]

Prescribed lamictal for depression

[Hidden]

It's possibly related to lamictal withdrawal.

However this could be coincidental.

Have you any family history of neurological disorders?

[Rkolln in reply to Hidden]

My mom has it but she can take meds to control it. I can't.

[Rkolln in reply to Rkolln]

She has rls

[Hidden in reply to Rkolln]

If you go to your doctor and say you are having suicidal thoughts then they have to take notice and failure to do so would be medical negligence. If necessary you may need in patient observation.

It may need more than just antidepressants to help in your case.

Some other thoughts which may or may not help.

Lamictal is obviously not working for you but it is NOT an antidepressant. It is an anticonvulsant. However it is also used for mood stabilisation for people suffering bipolar disorder.

Have you been diagnosed with bipolar disorder? In which case normal antidepressants may be of little value. In addition normal antidepressants are also of little value for severe depression, only mild to moderate depression.

Your psychiatrist should know that.

There are alternatives for bipolar disorder.

Have you been in any contact with any Bipolar charity?

You self-diagnosed RLS. This is always worrying and it's possible you're wrong in this. "Shaking" is not a typical description of the symptoms of RLS. I suffer anxiety at times and when I do, I suffer shaking. I also definitely have RLS. It's not at all the same for me, shaking and RLS very different.

If mine is particularfly bad, I take a beta blocker. Beta blockers can make RLS worse, but luckily for me - not.

Additionally, if you took RLS meds and they didn't work, particularly ropinriole, then this also suggest you don't have RLS.

Cymbalta can make RLS worse if you have it.

It's possible you don't. What are your symptoms?

[Rkolln in reply to Hidden]

No bi polar. ropinirole worked for a couple hours and kept me from sleeping then rls got worse. I have creepy crawlies all through legs. Twitching all over body. Hips are constantly jumping. Legs jump and twitch. Full body electric feeling in morning. Legs and hips always tight like someone is pulling on them. Doesn't stop all day. I just started cymbalta because I've taken in the past and did wonders. I know it worse for severe depression and anxiety. But I've noticed the rls symptoms get worse. My head also has a back and forth motion when I lay down.

[Hidden in reply to Rkolln]

Hi, sorry to say, but from your description this doesn't sound like RLS. Your symptoms don't seem to fit the RLS diagnostic criteria and ropinirole, if it's going to work, doesn't just work for a couple of hours. So really, it didn't work.

The. head motions aren't RLS either.

I note you're seeing a neurologist. Hopefully they can clarify what your issue is. If they think it's RLS then consulting a RLS specialist would be best, as Jools implies.

Wellbutrin can be used for depression when other antidepressants fail. It doesn't make RLS worse either

[kicker2 in reply to Rkolln]

Hmmm... the electric feeling happened to me . Started from heart area and out to my arns. I went off many supplements hoping one of those was the culprit. It went away and I never figured it out. I did develop tremors a few weeks later and added healthy fats. I was eating low fat plant based. Coincidence? Not sure, but if you eat low fat, maybe add avocado or other healthy fats???

[Rkolln]

I've told many doctors im suicidal and they say the shaking is caused by anxiety and I tell them it's not shaking from anxiety but the shaking is causing anxiety. They said see a psychiatrist. My psychiatrist doesn't have any idea what to do.

[Rkolln in reply to Rkolln]

The ropinirole made the shaking worse

[Joolsg]

You need a complete review of all your meds. Unisom contains diphenhydramine which causes RLS, melatonin worsens RLS so does cymbalta and lamictal.

The only med that you’re taking that is safe for RLS is trazodone.

You self diagnosed RLS and I suspect you were taking all these anti depressants and Unisom before you started suffering RLS?

I think you need a joint review with a neurologist and a psychiatrist to evaluate how best to treat your depression whilst minimising the severe RLS the anti depressants have caused.

The fact you are suicidal and haven’t slept makes it imperative you contact the doctors as a matter of urgency.

As most doctors don’t even realise anti depressants and diphenhydramine cause RLS you need to discuss this fully.

Perhaps you could taper off all anti depressants and the Unisom and take the smallest dose of Cymbalta that works for you and take either opioids or the lowest dose of the Neupro patch. I would never normally suggest the patch but either that or an opioid may settle the RLS enough to stop the whole body shaking and allow cymbalta to work.

Please also push for an emergency appointment with an RLS specialist- there aren’t many in the UK but if you let us know where you live we can suggest the nearest we are aware of.

I’ve just realised you’re American as you take Unisom (US product) & say your ‘Mom’ has RLS.

This is a UK based site but we have several US members.

If you email Doctor Mark Buchfuhrer at

[e-mail]

explaining your dilemma, he will reply for free to your email.

He is a stickler for correct grammar and spelling and insists on being addressed as Doctor ( not Dr or Doc).

He may be able to advise which meds will help and work best with cymbalta.

I know there’s an opioid crisis in the USA and some doctors refuse to prescribe opioids ( low dose) but Buprenorphine is possibly a good option if you live near a doctor who knows about RLS and safe low dose opioids.

Where are you? I know of a few specialists over there.

[Rkolln in reply to Joolsg]

I live around Portland Oregon. Thanks for all the info.

[Joolsg in reply to Rkolln]

Ok- the nearest Quality Care Centre and RLS expert to you is actually Dr Mark Buchfuhrer whose email address I just gave you. He’s one of top world RLS experts.

Jimbo posted a couple of days ago about his appointment with Dr Buchfuhrer.

Could you fly or drive to Redwood California?

I don’t know how healthcare works in the USA- here most healthcare is free but you may have restrictions imposed by your healthcare plan/insurance.

[Rkolln in reply to Joolsg]

Im unable to fly or drive due to condition. Thanks tho for the recommendation tho. I will email him tho.

[Joolsg in reply to Rkolln]

Do- and mention that you can’t travel as your RLS is too bad and he may know someone in Portland.

If cannabis is legal where you are - that would help your RLS and sleep if you could find a strain that is ok with depression/anxiety.

I am sending positive thoughts your way. There will be a solution to this.

[Rkolln]

I had to quit smoking pot because anxiety attacks after smoking. I still didn't sleep with it. Now I'm experiencing My mind is racing a hundred miles per minute when I close my eyes. Severe random racing thoughts. I just get comfortable to sleep and I start to doze off and my mind says nope and I wake up and my whole body jolts awake. That'll happen 100 times some nights. It scares me bad. Traumatic. crazy how your mind doesn't shut off. Has literally drove me insane. Thanks for all your input. Much appreciated.

[TheDoDahMan]

I feel so bad for you. Strong thoughts for your immediate betterment.

[mateloch]

I have restless legs syndrome and cervical dystonia. Cervical dystonia affects the muscles in your neck and causes a head tremor. They are both neurological and I do not know if they are related.

[Seaux]

I think you had better see a neurologist about this.

[Sara_2611]

could it be tourette's ??) Have a talk with your GP? to see what he/she thinks

[SophShaw]

How are you doing today. I find myself thinking about you and hoping you have managed to get to the doctor. Sending strength your way...

[Rkolln in reply to SophShaw]

Same same. im still up all night twitching shaking creepy crawlies. can't get into see a neurologist until Oct 6th. Sleep study Sept 20th. I feel like I've give absolutely insane. I have severe OCD now especially because the constant leg twitches and creepy crawlies.