HAVING MY OWN PANDEMIC

[sweetiepye]

I feel like my mind is sick or broken . I have posted before and received wonderful help and support from several of you . I can't express how grateful I am to everyone who responded to me. It was about 2 weeks ago when I started having horrendous nightmares which were so depilating .I was afraid to be alone , I had night sweats as well as tremors , headache chills stomach troubles, unexplained crying , and more. All because Of taking Wellbutrin while withdrawing from ropinirole, I was sent to a shrink who didn't know anything about rest less legs or ropinirole ,. He gave me gabapentin which I had a reaction to. I was sent home and my husband and I went into self- isolation . I was so terrified I had to be touching him at all times. He held my hands a we talked for hours. He put me on a schedule we woke , had coffee , he would rub my back we would breakfast and so forth for the day., It was 4 days before I could be alone in a room and even now I have to have lights on all the time and know where my husband is, I had a phone visit with my shrink on Fri. He really has no answers and now isn't the time to find a replacement . So we are following the plan I went for a car ride two days ago and walked yesterday for 1/4 mile.I have lost 18 lbs.. Every other day is a good one. The night sweats and shaking have stopped , I want to know if this is over I'm so afraid it or something worse will happen. Pam

[Heinrich7]

Oh my dear. I was just saying to my husband of 46 plus years ‘we just don’t know what each of us will have to go through in life’. I pray you feel better soon! Do not be afraid.

[sweetiepye in reply to Heinrich7]

Thank you

[Sillyvester in reply to Heinrich7]

Try cutting out coffee this is a big no no for rls

[sweetiepye in reply to Sillyvester]

I stay away from all caffeine as I have A fib . Good advice . Thanks .

[Joolsg]

I’m so sorry you are having such a rough time. DAWS is very real and can last months after the last dose of Ropinirole BUT it does get better.

I couldn’t sleep without the lights on for 6 months after my last dose and still occasionally ( nearly 4 years afterwards) I will get feelings of panic when I recall those dark months. And I am someone who had never experienced negative thoughts or depression and was always known as Mrs Positive.

So if someone has the slightest symptoms of depression or anxiety before they started Ropinirole then I’m not surprised that they suffer very badly during withdrawal.

It is still very early days for you.

I note from previous posts you say you were given Gabapentin but stopped after 3 doses because you believe it caused RLS.

I would ask you to not write off Gabapentin just yet.

Have you had any further episodes of RLS? If you are not taking any meds at all, you are likely to experience RLS. Maybe an episode coincided with you taking the Gabapentin?

It takes 3 weeks to become effective.

Are you getting any decent sleep? Sleep deprived will exacerbate depression , negative thoughts etc

I really hope you can find a way of dealing with the anxiety. My doctor gives me 1 or 2 diazepam (2mg) per week to help with sleep and it can also help with RLS.

I also started doing gentle yoga breathing and listening to mindfulness videos just before bedtime.

You will need meds to help the RLS and Gabapentin can be very effective. I haven’t heard of it causing RLS before.

[sweetiepye in reply to Joolsg]

Thank you joolsg. I was on gabapentin for RLS years ago and stopped it because I wasn,t sleeping I never had a problem taking it. Now after the reaction to Wellbutrin, which I stopped, I reacted to the gaba I think because my system is so comprised. It didn't cause restless legs, I felt like I was being electrically shocked . Two days ago I started having some breakthrough rls .I am on suboxone and Cymbalta right now. The suboxone is for the withdrawal. My emotions are all over the place right and I have loads of anxiety concerning the virus mess. Over load for sure, Stay well.

[Joolsg in reply to sweetiepye]

The Suboxone ( buprenorphine) is actually used to treat RLS and will help long term. Be very careful with the Cymbalta because it is an SNRI anti depressant and is known to worsen RLS in the vast majority of patients. Normally wellbutrin is the safe alternative, but you had a bad reaction to that. The other safe anti depressant is trazodone- perhaps discuss ( over the phone in these times of self isolation) with your doctor.

I hope the Suboxone keeps the RLS under control and that you manage to sleep and deal with the scary thoughts.

Take care,

[gcruz7141 in reply to sweetiepye]

Try magnesium calcium and iron pills that helped with my rls like it stopped and I have bad rls for years hope that works

[sweetiepye in reply to gcruz7141]

I may well do that , I've had 2 iron infusions which helped immensely . Is it necessary to have your magnesium levels checked first ? Thank you for responding .

[gcruz7141 in reply to sweetiepye]

Your very welcome I never got mine checked I know I'm anemic and I used to always get iron infusions also my doctor actually told me to try the magnesium so I went to Sprouts market and bought me a bottle that has magnesium calcium and iron all together and took them everyday I hope it works RLS is a nightmare

[sweetiepye in reply to gcruz7141]

Indeed it is.

[Hidden]

I recall your previous post and I think it was concluded that you are suffering from DAWS. Although it sounds just a matter of words, DAWS isn't just "normal" dopamine agonist withdrawal. It's more than that.

I'm really sorry that your psychiatrist has been no help. I'm afraid that, like a virus, DAWS just has to run its course. There's no treatment.

It does sound however that things are improving for you and your husband sounds wonderful.

You have two issues really, one is DAWS and the other is RLS symptoms.

Covid 19 has added a further problem and many people are getting very anxious and are additionally restricted from doing things which normally might help.

I'd agree with Jools suggestions for both your RLS and your anxiety. Mindfulness strategies can be particularly helpful. In addition, in moments of panic - controlled breathing.

Hang in there!

[Hoochybaby]

Hi Pam

A few months ago a had two similar episodes like you and my parter found me shouting and banging on the walls and doors I thought I was having a stroke I couldn’t stand up and kept Falling on to the bed. At the time I was withdrawing from a high dosage of pramipexole and also taking Gabapentin. I stopped the Gabapentin immediately and cut back on the Pramipexole from a very high dosage . Three months have now passed and I’m no longer on any DAs and I lot better my rls is still there but manageable stick with it and I hope the future is better for you

[Heatherlss in reply to Hoochybaby]

Do you still have daytime symptoms now ? You were on pramipex for a long time weren't you?

[Hoochybaby in reply to Heatherlss]

I still have daytime rls but it varies and not as bad has it used to be when I was augmentation with pramipexole

[Heatherlss in reply to Hoochybaby]

Thats good news I guess. Did you have your iron figures resolved ?

[sweetiepye]

Thank you Hoochybaby for responding . I wanted to hear from people with similar experiences . I know we aren't all alike , but sometimes we are . You have given me hope . I;m starting to have flickers of rls now so I hope that means the drugs are abating . Bless you. Stay well .

[Hidden]

I’m not sure I can add anything helpful to what others have said. But let me try because I feel your pain, fear and anxiety.

I believe you have figured out that you have had a bad reaction to Wellbutrin and perhaps other drugs as well. I must say you have a lot of meds in your system and they may be interacting with each other. It would be hard to know that for sure. Secondly, you are unique as everyone doesn’t respond the same way to Meds. What works for one does not work for another. Gabapentin helped the pain of RLS but cause breathing problems. Requip did nothing to help my RLS so I was switched to Mirapex and dosage increased over time to the point I was at the top of recommended dose. Yet my Dr told me I could increase even further. It took this site to make me aware that I was suffering what is called augmentation. I’m a nurse and have never heard that term until now. But I took the advice and began to lower the dose. I am better but not totally relieved. I’m still working on it. Having said all that, I would just make the following suggestions:

Try things other than drugs like heating pad, ice packs, hot baths, hot towels, massage( your husband sounds phenomenal)

Try OTC pain patches, lotions containing Lidocaine, Deep Heat ointment, rubbing alcohol

Avoid caffeine, nicotine, andchocolate ( if possible)

Try walking, stair climbing one foot at a time on 5-6 stairs, leg stretches, walking in place

Try to wean off ALL meds because if not, you really don’t know the true culprit

Listen to soothing music or beach sounds use phone apps to find some as well like BREATHE

Lastly but most important pray. In the midst of this pandemic things become amplified in our minds. If you do not know Jesus as Savior please invite Him into your heart. He will help you through all your fears and anxiety. He will never leave you or forsake you. He already knows you by name and is waiting with outstretched arms to receive you as His child. Run to Him; He loves you. God bless you in your hour of need.