RLS, medication or hormones?

Posted , 8 users are following.

I have pretty severe RLS but ropinerole is working well and so I sleep fairly well. However, I am suffering low level anxiety - which peaks to a bleakness in the early evening so that I go to bed at 6.30 most nights. Not helped by nauseous feeling from ropinerole. I also have bouts of fairly debilitating depression. It's hard to tell whether the mood issues are symptoms of the RLS, side effects of the ropinerole or they could be hormonal changes from being 54!

I am so grateful for being able to sleep at least as much as I do (I am often up by 3am) but I am so weary of finding everything such a challenge - because of the anxiety/depression. I've had tons of counselling, am hopeless at mindfulness. I do some P/T work from home but can't imagine a "real" job - can't face those early hours full of dread for the day if it has more than the usual challenges. It's bad enough already. But without the stimulation of working with others I'm sure the depression is worse that it would be. (I'm not a recluse - have good friends.) GPs don't seem to know much about RLS. Was prescribed SSRIs which made the RLS worse. 

Just wondering how much the mental health side of things is experienced / managed by anyone else out there.

And whether anyone else on Ropinerole has early evening issues as I do? Thank you!

 

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  • Posted

    I couldn't tolerate Ropinirole as it gave me insomnia. I am currently on Gabapentin 200

    to 300mg. I do feel anxious if I take any more. This helps with RL and sleep and I believe it is fairly well tolerated.

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  • Posted

    Much as dopamine is thought to be associated with a reward mental state, I get the feeling that that reward state is more a relaxed, surfeited feeling than one tending to euphoria. In any case, I think ropinirole, which is being, or has been, tried for treating depression, is more a "downer" than an "upper".

    I don't believe I suffer from clinical levels of depression, but starting the day without a few mugs of real caffeine-rich coffee is often, even generally perhaps something I would not be keen to attempt. I don't find it makes any difference to my RLS (and hope it won't to a problem I have with my eye).

    In the evening, when the events of the day, which may mean an accumulation of events of several days or longer, start to press on me, I do need to rest on the sofa, maybe even get an hour's sleep. It seems a reasonably "normal" thing to do.

    Maybe your anxiety/depression is just an elevated form of the daily cycle I find quite usual. I don't know that all SSRI's make RLS worse, fluvoxamine in my case, when I had some, didn't; mirtazapine, a TeCA, most certainly does make RLS very much worse (or did in my case).

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    • Posted

      Yes, I start the day with tea. Sunrise usually several cups later! 

      I know that SSRIs are not generally deemed a good option for RLS, and certainly didn't help me, but RLS seems to be so difficult to categorise - so that we all seem to have to work out what works best for us. 

      Thanks for responding. This was my first post, so it was so good to have people take time to reply.

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    • Posted

      Hi Robert

      I have peripheral neuropathy and RSL.

      I was wondering what the problem with your eye is as I too have some problems with my eye as well as a host of other things , not anxiety related btw but proven with scans etc!!!!

      Look forward to hearing from you.

       

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    • Posted

      Hi Jane

      I don't quite know what the problem with my eye is, whether it's photic retinopathy (I'd been working in the garden in very bright sunlight with the sun catching the lens of my glasses over the affected eye quite strongly), central serous retinopathy (warmth can act as a trigger) or wet macular disease (WMD).

      When I went to the eye hospital, the doctor said quite categorically that it wasn't ultraviolet damage and yet the etiology seems to line up quite well with such damage.

      While I was there, I had what I believe was on OCT scan. If I had central serous retinopathy (CSR) I suspect it would have been seen that the retina was swollen, but the doctor only said about choroidal neovascularization – not a diagnosis, but a possibility, something to be prevented. CSR is associated with people with type A personalities, those liable to anxiety, insomnia, etc ... and RLS?

      Even for WMD, it seems to have developed very suddenly. A standard optician's eye test just over a year before was totally normal for me.

      Just recently I've been getting bright, intense, sort of part-circles of silver light – something like if you were to start drawing a sort of irregular silver annulus on a computer, get, say, three-quarters the way round and then enlarge it so that you see all the little squares making up the pattern. I read that maybe one possible explanation of this can be related to mental tension, even migraine.

      In cases where RLS is associated with nerve problems, it's possible that gabapentin or pregabalin will work. They don't have the augmentation problems of dopamine agonists. (They don't work for me.)

      Maybe some of this makes sense to you!

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    • Posted

      Hi again Robert

      I understand a lot of what you have written but I am just wondering if you can see a retinal expert at thee eye hospittal. Which hospital is it btw?

      You could PM the name I think!!

      If in the UK you could possibly ring the helpline at Moorfields eye

      I cannot take gabapentin, lyrica, amytriptiline due to the side effects, interactions and contraindicated anyway due to certain conditions that I have.

      ​You seem to know your stuff about eyes so I would pluck up the courage to seek a second opnion by going to the eye emergency clinic and getting your eyes checked out as a new entity if you see what I mean. Ask who is a retinal expert?

      ​Jane xx

       

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    • Posted

      Hi again

      Well, it was the emergency section of the Manchester Royal Eye Hospital. When I went I knew little detail about the eye and, after searching the Internet for what might be wrong with my eye, I got my lines crossed – as I remember I mentally took down that it was photokeratitis, and went into the hospital saying that as what I thought I had. I guess this may have made the doctor there less likely to discuss it with me, and in fact he advised me against researching the Internet for information on the subject.

      If I just had a copy of the OCT scan that would be something – I don't know if my GP will have been sent a copy. My only way back to the hospital is via my GP – that's the case when you turn down appointments the hospital give you. I'm wondering if a fundus photograph of the retina would be helpful – there's an opticians chain offering those.

      Robert

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    • Posted

      Hi again

      ​MREH is an excellent hospital. If you are dissatisfied then you have the option of going to the eye casualty clinic as a walk in patient , you do not need an appointment and it does not matter that you failed to keep an appointment. What matters is and will and doesto this hospital is your eyesight and eye health etc.

      There should not be anything stopping you from going back to the eye emergency clinic and stating that you are experiencing the same signs and symptoms, that you were advised to return that you are worried and could someone please examine your eyes as you feel so concerned.

      The staff are trained to take these issues  seriously and they will . Trust me.

      There are lots of consultants on during the week and probably a couple at the weekend too. The emergency eye clinic canusually ask one of the Specialists in say retinal issues or whatever the provisional diagnosis may be to examine your eyes as well.

      SCAN REPORT.

      The hospital can supply you with a copy of your scan Report , just ask for a copy when u go back to the eye casualty clinic which is open from 8am to 8pm each day .Check time of closing on a Sunday.

      ​No one can fault you for going back.

      I had retinqal photograpghy plus usss of my eyes done torule out auto immune disease of the eyes. The eye dr  can also order bloodtests to check for any auto immune disease or eye infection etc. They are very thorough at MREH.

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    • Posted

      Hi again – I'm sure all of this will need moving or deleting from this thread but:

      The appointment letter I got said:

      ".. If you do not attend the appointment without having rearranged it in advance you will not be given a further appointment. If this happens you should return to your GP who may make a further referral. ..."

      I, of course, cancelled my appointments.

      There's actually been quite a few changes in the condition since I went last May.

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    • Posted

      Robert

      Just ignore that b...... computer generated letter!

      ?I would go back and stress your signs and symptoms but present to the emergency eye walk in clinic at MR EYE hospital.

      ?The issue here is/are  your eyes not cancelled appointments and/or  letters that are not even tailor made for a particular patient or even taking into account their specific condition or signs and symptoms.

      I would go to the emergency walk in EYE clinic at the  eye hospital and present them with your signs and symptoms.

      Theeye clinic cannot refuse tosee you . Ignore any adverse comments because the concernhere is not missed appointments but your VISION.

      Keep calm, keeppote, be logical and Bobs your uncle.

       

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    • Posted

      Jane, it was the Emergency Eye Department of the Manchester Royal Eye Hospital, part of Central Manchester University Hospitals NHS Foundation Trust.

      I don't know, I really want to ask my doctor what he knows. If it's photic retinopathy there's nothing they can do; if it's serous there's only a laser treatment that might leave a scar, so I'm not ready for that; and if it's WMD it's probably too late for anti-VEGF, which I probably can't face anyway.

      At the moment, I just want to know what it is – I don't want a Lucentis Clinic appointment to follow a fluorescein angiography.

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    • Posted

      Robert

      I think you are imagining the worst scenario all the time. This acute anxiety  is  very very common and well acnowledged concern over their vision.

      These drs at MREH are very clever. They will be very calm and professional with you.

      You need to see the eye specialist in order to get peace of mind.

      The quickest and also the appropriate routein through the emergency eye clinic.

      Googling suff isno use. You need the eye specialist to examine your eyes.Dr Google is not the answer here, it is making things far worse.

      ​Have u got someone to go with you to the eye hospital. If not grab a taxi and get there.

       

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    • Posted

      The trouble is Jane, I won't be calm at all with a hypodermic approaching and entering the white of my eye, and no amount of Valium that leaves me conscious is going to alter that fact.

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    • Posted

      Because it's the way they administer anti-VEGF to stop neovascularization in the choroid – no anaesthetic, no options. It's what they do in the Lucentis Clinic.

      I gayly sat in the hospital occasionally remembering the German film "Masserberg" (it's on YouTube but there's no English subs for it) thinking that such procedures were limited to treating serious STD's in the days of the German Democratic Republic – not so!

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    • Posted

      Oh dear

      Robert I thought that you had not yet been given an ophthalmic diagnosis.

      I would focus on something plesant and try not to dwell on a video that somehow does not even relate to your situation.

      The only way to get any reassuranceis to have an eye  examination to exclude the condition that you think that you have.

       

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    • Posted

      I've not been given a diagnosis, the fluorescein angiography should have helped in that direction though there are other and further, one or two, examination methods.

      I don't know how the doctor could be so sure it wasn't photic retinopathy.

      Now I'm not even so sure I want green dye pumped around my eye in my blood.

      (I've watched the film a couple of times though the Internet on German catch-up television – I can't say I'm addicted to it!)

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