Anyone have severe psychological depression during wearing off?

Recently I have been very hurt by my adult children's attiude to my PD. Last week I willingly agreed with my PD nurse to take anti depressants to help me cope but inefficient GPs mean I've not actually got them yet. During this last week I've experienced regular episodes of psychological pain ,- each up to about 2 hours - more extreme than I could ever have even begun to imagine . I find it impossible to describe how bad they are without sounding melodramatic - During them I can't speak, can't move (not a PD freeze) and just being conscious is unbearable and I look terrible. Suffice to say if I felt equivalent physical pain I'd be in intensive care! Having just emerged from the worst episode yet I'm beginning to realise that they seem to coincide with medicatiion wearing off/ not being as efficient. But which is cause and which effect? This evening genuinely felt like being in hell - sounds really OTT now but not at the time - after taking my next dose of madopar it gradually eased until after 30 mins I felt quite normal - just fed up . I don't have any hallucinations, confusion or psychosis during them - just searing pain. Now I'm dreading the next episode..I've tried to explain to the GP and I'm promised the anti depressants by tuesday, but they may take 6 weeks to kick in. I simply won't survive this going on for 6 weeks. . Has anyone else experienced this extreme effect? And if so any ideas for prevnvetion or minimising.I wonder if I'm having some sort of breakdown? Many thanks for reading this - hope I don't come across as completely unhinged . . . ..

14 Replies

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  • Hi Pen

    That sounds really scary. I notice that I can get very emotional and cry easily when I am due for medication. Shortly after taking the medication I feel back in control. I'm not on antidepressants but I know they can take up to six weeks for full effect but don't despair yet as many people notice a difference much sooner often after a week or two.

    This is a wearing off symptom for you so perhaps you could discuss it again with your PD nurse - Have you thought of adjusting the timing of your madopar to stop this happening? After all you would be thinking about doing this for physical symptoms and your psychological symptoms are just as disabling.

    All the best.

  • Hello Hikoi. I could not help but notice this post of yours is 3 years old - is this a record for oldest posts on HealthUnlocked?

  • What you're describing sounds very similar to my panic attack/anxiety, depression episodes. I know at this point 6 weeks of waiting is unbearable and is not going to lessen your pain only increase it! Your Dr. should be writing you a script for like Ativan or Valium that you could take as needed and should tide you over until the other meds take effect.

    I, too seem to have my worse anxiety during the "wearing off" period.

    I hope you find some peace.

  • Thanks so much. Woke this morning to massive vertigo attack (I have Meniere's as well as young onset PD) then all the above kicked in. Have emerged again after first dose of the day. I took it a bit earlier - thanks for the advice Hikoi. But each time it's harder to get through. Unfortunately my GPs are very reluctant to prescribe Valium etc even tho it is effective for vertigo as well and I'm very aware of the need to avoid becoming dependent. I will ask again but don't hold out much hope. It's all a bit of a nightmare. Don't want to bang on about family etc but sometimesI wish they'd understand that often the most effective drug is simply a bit of kindness. I'm normally a very positive, capable person who handles my PD well. I live alone - but at the moment am not coping. I'm increasingly thinking the onset of vertigo and these awful feelings is my form of breakdown -it's v scary wondering how I'll get through it. I really appreciate the opportunity to talk about it on here with people who understand and can offer good advice. But I don't want to be a moaner. I just want to get on with my life - but for the first time ever I can't.

  • Hi Pen,

    Well done for spotting that your anxiety and depression symptoms are often linked to your wearing off. I know my husband was seriously depressed before and just after being diagnosed with Parkinson's. It seems to loom large in the list of non motor symptoms for younger onset Parkinson's patients. However, the antidepressants worked very well for him. He took Citalopram as it did not react with his PD meds at all. I know nothing about Valium use in PD.

    If this is a breakthrough of depression when wearing off, I agree with Hikoi, adjusting your PD med timings, with support from a PD nurse or other professional expert in PD, might bring about a quicker response than waiting for the the antidepressants alone to kick in. We know they take a while to work and they could be 'getting up to speed' while your mood is supported by reducing the fluctuations in PD meds.

    Hope you find a way forward soon,

    Sue

  • My dear one: Don't be alarmed it is totally normal. this challenge we face is an insidiious monster that stalks us at every turn and tries to humiliate us whenever and whereever. wheter it si severe leg cramps first thing in the morning. Good morning, dear how was OOUUCCHHHHHHHHHH screaming pain for 5 - 10 minutes, followed by laughing relief or a room in the blackest pit in hell when you wake to pee at 2 am, my time of course, it's all the same knee bending terror we face daily. smile when you can because the bustards arre waiting to pounceon me at any point. the meds suck, the doctors,USA, suck, my life well you get the picture. Good luck my sweet one I'm praying to the only one who can help but hasn't answered yet!

  • I'm having some problems right now too (no details needed here) and I am on Prozac which has worked well since I switched to it last year. Lately I've been waking up in the mornings anxious and depressed like I want to bang my head against the wall (but I don't, don't worry). And then it lifts as my morning meds kick in and my symptoms subside. I actually feel my spirits rise as I regain bodily control and flexibility. Odd thing is I take the Prozac at bedtime (forget why). I am sleeping well these days so I hate to mess with that. It's weird to know a pill makes it easier to feel more positive, but thank God they do. I was a depressed child (no meds, no shrink, just "Snap out of it!" or "Stop feeling sorry for yourself!"). I don't want to ever live like that again! ... Good morning all. Sorry 'bout the rambling.

  • The consultant tried to get my husband to take a higher dose of Sinemet but at twice the time between doses. This did not work at all for Drew and so he went back to taking the smaller dose every 2 hours - which might sound irritating but is quite easy to handle i.e. on the odd or even hour according to when he wakes up. I think that it would be advisable to talk this over with the PD nurse or consultant as soon as possible and perhaps adjust the timing and dosage to something that suits you. It is your body and you know best what works for you. Remember all PWP's are different. Drew takes diazapam for panic attacks and to relax his muscles. They say that these are addictive but so is levadopa. They act almost immediately and he only takes them when he needs them so he has not become addicted to them. By the way he cannot take other forms of antidepressants as they mess up his PD meds. We will all be praying for you. Please accept an electronic HUG from me.xx

  • Thankyou so much for all the responses. Elaine, your husband sounds very similar to me. I reduced my madopar to smaller amounts every 2 hours myself about a year ago when I realised it removed all the problems I was having were due to the larger dose every 4 hours - the medics then agreed I could carry on withthat regime. I also have the very occasional diazepam (valium) 2mg for muscle tension. They are very beneficial for this, for the vertigo and I'm sure would help with these awful depression spikes. I remember a very expereinced neurologist I used to see (sadly now retired) making the same point you make about them - in fact his exact words were that compared with the L dopa , they were almost like 'sweeties'! I'm also a bit worried about the citalopram I' m waiting for as I had a very bad reaction to another SSRI long ago before I had PD. I did tell the PD nurse this but she didn'tseem to think it was relevant. You are so right, I do know my body and I know what I need to get me through this- a bit of tlc plus the odd diazepam; sadly neither seems avaialble at the moment!

  • I haven't had this type of sudden depression since my (early at 44?) menopause. Right before a hot flash I'd feel like jumping out a window. After I cooled off, I was "OK". Depression lifted completely post-menopause. Now I'm 71 and 10 yrs with PD, I feel like a lab animal. Maybe in the future medicine will understand ALL the interactions of the meds with ALL the unique hormones etc. our own body produces. btw my daughter told me she needs a break from ME! Fine! Hang in there pen1!

  • Thanks. Sadly i can't blame the menopause as it was all over by 43 and I wasn' t diagnosed until 46 - 9 years ago!

  • I also have wear off anxiety/depression that is worsening over time. I feel that my coping skills are dead. I've discussed it with several neuro's and now a Psychiatrist. They agree that it is dopamine depletion in the reward system amuck. I too have not had success with ssri's snri's but maybe never gave them the full time trial.

    Currently i am wearing the emsam patch which is a selegiline anti depressant at 6 mg. I think it increases my dyskinesias so i'm spreading the c-ldopa time a little more. At 3 weeks of the patch i'm not sure it is effective yet. Atavan sure helps... it is a cousin to valium. They are benzodiazapems that are addictive... but we are dependent on drugs anyhow.

  • this topic is very much on my mind ( no pun intended) because just recentoy in the last few ,months of my PD career of 11 years I have experienced horrendous wearing off/ on symptoms, i. e drpoling, breathing is short and often scary, mouth stiffening and anxiety which causes pain everywhere, it seems. waiting for the last dosage, I now can barely last 2 - maybe 2 and a half hours. I am writing this with some degree of correct language, but not without making corrections every 4 words. my heart starts to pound, and - well judging from the above horror stories, some of you, dear friends, seem to undergo similar torture. The rest of of it - nightly sweats etc. are often unbarable and the friends and family members who say- " just breathe," or try to meditate your fears away..... bu... shi.... as we say here in the USA

    So.... can I be of help to anyone?? I am seeing my neuro this week.... and we are definitely going to have to change some things in order to make my few hours of on time a bit more merciful than it has been.

    thanks for listening to my story, and try to do the best you can...

    Iron

  • Yes I am on an anti-depressent and am happy with it. I do still have the mood swings with the timing of my medication. It is so out of character for me to be down and out but when this hits me I am really down., Thank God for my husband who reassures me that I am loved and important in his life. We all need someone to love, something to do, and something to look forward to. With these we will be happy.

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