STILL NEED HELP

[sweetiepye]

I'm wondering if I have DAWS( dopamine agonist withdrawal syndrome ) I started my tapering from requip the first of Feb. and finished the end of the month. Now I find I'm having terrifying dreams. heavy sweating. roaring in my head, lots more physical discomforts . Has anyone experienced this and if so is their a solution ? My doctor gave me Gabapentin but that started my RLS off so I stopped after 3 doses I've called my doctor . waiting for a call. I can't explain how really scary this is. Thank you for any forthcoming advise or information. Stay well everyone . Pam.

[Hidden]

Hello Pam, I'm afraid it does sounds a bit like DAWS. DAWS, however does cause some mental health issues as well, anxiety, agitation and depression.

I hope you get a call back soon and your doc knows about the condition.

[sweetiepye in reply to Hidden]

I think I have developed mental problems already from the withdrawal . Because I was on requip for 15 years and withdrew in a month my doctor says my brain is healing and it will take some time. He prescribed lorazepam which seemed to calm me down but the Shrink took me off that. Then welburtin was prescribed and I had the nightmares after that...stoped it immediately , then the gabapentin was given me. I felt like I was jumping out of my skin with that. He suggests I stick with it for awhile but I don't want to as it scares me.In the mean time the RLS is very mild and I can live with it. iT'S THE FEAR AND PANIC THAT I CAN'T DEAL WITH.sorry for caps. I don't know where too turn at this point. As always, thank you for your help and concern. Stay well. Pam

[Hidden in reply to sweetiepye]

I'm sorry this is so awful for you. It sounds as if you withdrew from the Requip too fast.

I wonder if you suffered an Impulse Control Disorder (ICD) because of the Requip. This is gambling addiction, shopping addiction, compulsive eating or other compulsive repeated behaviour.

I ask this because DAWS is strongly associated with ICD and it's unusual to have DAWS if there's no ICD.

If you don 't have ICD then it may mean you don't have DAWS or that if you do, you are more likely to recover from it sooner.

I don't know why the gabapentin apparently made your RLS worse. It doesn't work for some people, but even for them, I can't imagine it actually makes it worse.

I appreciate that if your RLS is mild, it's your mental health that's the main issue. If you're seeing a psychiatrist, aren't they advising anything for your anxiety and agitation?

[sweetiepye in reply to Hidden]

I've only seen him once and he prescribed the gaba. I do have an impulse control behavior It causes problems in relationships , as in I always have to be right and in control . I get very nasty and critical . It has cost me my relationships with 2 of my children. It took getting off requip for me to understand this.

Are you saying I will have a harder time recovering from DAWS because of ICB or an easier time ? Where did you find this kind of information? I have searched and searched and found more here than else where .

[Hidden in reply to sweetiepye]

There are several sources that say ICD is a risk factor for DAWS, this is one of them

ncbi.nlm.nih.gov/pubmed/236...

To clarify, yes, the implication is that if you had an ICD then it will be harder to recover from DAWS.

However, what you describe doesn't sound like an ICD. An ICD is, in effect, an addiction. Gambling, overeating, shopping and hypersexuality are the most common ICDs. Being controlling of others is not an ICD. So I don't think you had an ICD.

In which case, it might help if you can get a doctor to confirm if yopu have DAWS or not. Knowing what's best to do depebds on this.

It seems you had a reaction to gabapentin. It's unlikely to cause RLS and certainly not immediately. Nor does it cause augmentation. Augmentation is only associated with L Dopa, dopamine agonists and sometimes tramadol.

Pregabalin is not quite the same as gabapentin, so you might not react to it, as you did for gabapentin.

However, if your RLS is mild then it may be better to use non-pharamaceutical remedies for it.

Strange that a psychistrist prescribed gabapentin. I guess it was to try a n d treat both RLS abd anxiety. Gabapentin can ease anxiety.

Your main issue at the moment apparently is your mental health. Again seeing a doctor/psychiatrist is advisable in the short term especially if you don't have DAWS.

In the longer term sime psychotherapy should help.

[LotteM]

I agree with Manerva. Not from personal experience, but from reading the many stories on this forum.

Incidentally, are you sure it was the gabapentin starting off the RLS? Your symptoms most likely increased with every reduction in Requip. Gabapentin is not an easy med, it takes time to become effective and it takes time to assess whether unwanted side effects wear off or not. With me it didn't, but I tried some 6-9 months. Did you start low on the gabapentin? Usually they say that 300 mg is a starting dose, but I started at 100 mg and built up slowly; +100mg every one or two weeks. Alternatively, your doctor may prescribe pregabalin, some people respond better to it. It is all trial and error, unfortunately!

[sweetiepye in reply to LotteM]

I had been on gaba. before and was taken off because it seemed to augment or stop working at any rate. So whe the shrink suggested trying it I agreed to it. I took it three times and each time I immediately had RLS and the last time I got physically sick with it , body shaking and nausea . Is pregabalin similar to gabapentin ?

[YodaDog in reply to sweetiepye]

Gabapentin and pregabalin are similar in that they are in the same category of drugs. They are referred to as gabapentinoids, as oral anticonvulsant drugs and also as alpha 2 delta ligands.

They were initially developed as anticonvulsants, but are clinically effective in a range of central nervous system indications, including neuropathic pain and anxiety. Their precise mechanism of action remains undefined and, to some, controversial.

Patients taking them respond differently to each. I take gabapentin, but couldn't cope with pregabalin. It took me a while to get used to gabapentin and I now take 900mg daily, whereas I couldn't get used to pregabalin, it made me feel like a zombie and I had to hold onto the walls to walk around the house.

[LotteM in reply to YodaDog]

Thanls for the clear explanation, YodaDog 👍🏻

[sweetiepye in reply to YodaDog]

Thank you for the response. I'm afraid to take anymore drugs . They have hurt me more than they have helped in the long term. Stay well, Pam

[Parminter]

Do you take any other meds for other conditions?

[sweetiepye in reply to Parminter]

I;m on Cymbalta and suboxone to help with the withdrawal from the requip. They tried to add Wellbutrin to the mix and that's when it all went haywire . I stopped the Wellbutrin and that's when the gabapentin was given. I think I need to just try to ride this out if I can. Thank you so much. Stay well, Pam

[Heatherlss in reply to sweetiepye]

Cymbalta is one of those which makes RLS worse isn't it Parminter ?

[LotteM in reply to Heatherlss]

It is! Most antidepressants are.

Sweetiepye, discuss with your doctor alternative treatment for your anxiety etc. The potential DAWS may have made it worse, but the Cymbalta may contribute importantly to your RLS symptoms. It may even be that without the Cymbalta they will be close to negligible. BUT, never stop such meds suddenly. But please do consider tapering off. Have you considered CBT cognitive behavioural therapy? Or discuss the suggestion of Clonazepam by Nithomp with your doctor. It CAN get better. Good luck!

[Parminter in reply to sweetiepye]

Cymbalta is an awful drug, it can do all sorts of horrendous things. I would question that one. (If you use Facebook, join a group called 'Cymbalta Hurts Worse'. It will give you the horrible truth. I was on Cymbalta and went quite mad, all sorts of horribe effects.)

And I have never heard of suboxone being used to help withdrawal from a dopamine agonist - has anyone else? It sounds like a bit of a thumbsuck to me,

These are all psychoactive drugs that could play havoc with your brain.

When your available dopamine drops very low you will experience fear and dread, perhaps accounting for your nightmares.

Our brains become pretty fragile on dopamine agonists, and mixing it up with a salad of other drugs is asking for trouble.

Nobody - but nobody, and certainly not psychiatrists - knows how all these drugs interact together.

"The symptoms of DAWS include anxiety, panic attacks, dysphoria, depression, agitation, irritability, suicidal ideation, fatigue, orthostatic hypotension, nausea, vomiting, diaphoresis, generalized pain, and drug cravings. The severity and prognosis of DAWS is highly variable."

Note that it says 'includes', so this is not a complete list.

Find out as much as you can about Cymbalta first - from the victims, not the pharmaceutcal companies. It could very well be a cause, previously masked by the DA.

Good luck.

[Not-methadone-addict in reply to Parminter]

Hi,

In terms of suboxone it is definitely not a thumb suck in terms of either restless legs syndrome, which is my guess as to why the RLS symptoms are in good control and the gaba is not necessary. Suboxone is often used like methadone in order to assist in the dopamine agonist withdrawal and does an excellent job with generally few side effects. My confusion is why you would need the gaba for RLS at all because the suboxone is now acting as your replacement for the Requip and no other drug is required. Your neurologist or whomever is treating your RLS needs to be working in concert with your psychiatrist so they’re not undoing the good each is doing and prescribing drugs randomly. More and more research is being done on the use of suboxone for RLS treatment. Read up on it for sure and definitely don’t just stop taking it because this is what helped you get off the Requip. Mostly if suboxone or methadone is used in Requip or other dopamine agonists reduction the likelihood of DAWS occurring is less likely. I was actually able to come off 8 mg of Requip utilizing no more than a total of 10 mg of methadone fairly quickly. I was shocked. Awesome doc trained by Dr. Buchfurher fro Stanford in California. I’m wondering if what your experiencing is coming from mixing all these different drugs that may be compatible. Need a good psychiatrist who isn’t willy nilly prescribing everything but the kitchen sink. I would think the suboxone is treating the RLS and Cymbalta somewhat the anxiety, though I too dislike it and you’ll find it interacts with a lot of other medications. On the Internet you can find what they call drug interaction calculators and you enter all the drugs you’re on and it’ll tell you what interacts with what and how dangerously. Drugs.com is one sight or just google it.

Sus

[Nlthomp]

I take Clonazepam for anxiety and panic and find it to be quite helpful. The dose is .5mg three times a day as needed. As my fear and panic started to get under control I was able to get by on 1mg a day. I’ve been taking it for years and have never abused it, nor has it become ineffective. I hope you find something that helps. I know how debilitating fear and panic can be. Good luck!

[sweetiepye in reply to Nlthomp]

thank you, I hope that happens soon.

[Hoochybaby]

Hi Pam I had exactly the same symptoms as you when I came off pramipexole I tempered off gradually from a high dose and at the same time started gabapentin I had two most terrible nightmares and I stopped the gabapentin and haveyhad any since I’m off medication altogether now apart from paracetamols my rls is just about managing now after three months it does take that smounyof time to come off the drug completely stay strong good luck

[sweetiepye in reply to Hoochybaby]

Thank you. I was hoping to hear from someone who had a similar experience. I;m afraid this is never going to be over or that it will get worse some how. You have given me hope. The nightmares plus the pandemic have sent my anxieties sky rocketing . Stay well. Pam

[Heatherlss in reply to Hoochybaby]

I think you've done really well. I wish I could I reach that stage some day. If you're doing well with paracetamol why don't you try codeine ? I'm just suggesting. I'm not too knowledgeable about it.

[IrisRN]

I wish I knew the answer.