Medication for a Fear of Medication? — Scope | Disability forum
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Medication for a Fear of Medication?

OverlyAnxious
OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
I can't believe I'm the only person with this issue, but I just can't find anyone online in a similar situation or any medical professional that has understood this - which leads me to believe it can't be common!  I've just had another report back suggesting the only way forward is medication.  I have NEVER taken a pill in my life, and haven't taken any form of medication since 2003, this isn't just a whim, it's a severe fear of the side effects.

Basically, my anxiety is largely caused by my own body, I can't cope with bodily functions and especially bodily fluids which is reinforced and confirmed every day.  (Snot, saliva, blood, faeces, earwax, etc!)  I can't cope with 'illness' events (bad D episodes, major nose bleeds etc) that thankfully don't happen very often, but again, each time they do confirms the fears, it does not make it easier, just adds more anxiety and makes me more terrified that it will happen again, which of course, eventually it does!  I can't cope with other people, have to live alone, and couldn't have someone come in to care for me in my own home even for an hour, let alone go to a hospital or residential setting.  I also couldn't phone for the paramedics or travel in an ambulance.

I have to try and get by on my own.  The only way I get through life is by damage limitation and avoidance of as much risk as possible.  I am well aware this isn't going to help reduce the fears, but knowing that I can't cope with even minor illness or injury means that I have to do all I can to avoid it.  I certainly don't feel I'm in any sort of position to 'challenge' these fears or accept that these things will happen.

Yet I just keep getting told that I'll have to take SSRI's before any other treatment can begin.  I'm sure we're all well aware that SSRI's cause nausea (and worse!) in pretty much everyone for at least the first couple of weeks.  This just isn't something that I'm able to go through based on current daily events and past experiences.  I already suffer with frequent nausea and there really is no room for any extra before the inevitable event that I know I can't cope with alone, or have any help with!  And that's without the potential for even worse mental side effects.

I feel like I'm completely stuck here and just wondered if anyone else was in the same situation or knew anyone in the same situation?

I know we're all about positivity on here but I just wish I could 'slip away' everyday as I never have been able to cope with this body and don't see that I ever will - bodies just worse as we age as well!  Ironically, it's the fear of getting it wrong and still being alive in an even worse state that stops me actively following that desire, I'd have been gone 15 years ago if it wasn't for that!  

Comments

  • Wini1960
    Wini1960 Community member Posts: 130 Pioneering
    Hi @OverlyAnxious I cant imagine the hell you are going through. Is there a way of taking SSRs in a liquid form. Your right  medication does cause side effects but only for a short while. My thinking is you would benefit from one to one therapy but the fact that you dont like being around people makes this a no, no. I hope that you can find a way through this perpetual turmoil. All the best for the future .
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    Thanks Wini,

    Liquid form wouldn't make any difference as the side effects would be the same, it's those that are the issue, not really the pill form.

    Yes, the idea is that I would need meds in order to do do face to face therapy - that's obviously not going to work either!  :D  I do understand the basis of CBT and ERP but it just doesn't work for me because I can't accept the risk of these things, knowing that I can't cope with the consequences from experience.
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    A very difficult situation to be in and not something I could offer a possible solution for.

    Haver you tried any alternative therapies like hypnosis or similar they may be able to take away the fear

    Experts say fear comes from something that happened to you in the past and if you can tackle this event and out it in perspective the fear will diminish

    There is a couple on This Morning that specialise in this sort of therapy if you have ever watched them I think they are called the Speakmans

  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    edited August 2020
    @janer1967 I was going to suggest hypnotherapy too, however a session could be done on cd and then posted, that way @OverlyAnxious wouldn’t need to physically be with someone, that solution might work. 

    As far as SSRIs are concerned I personally didn’t find nausea a problem but slight sleepiness and later weight gain certainly is a long term issue.

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    @leeCal @OverlyAnxious I know you can get hypnotherapy through some apps and dont actually have to see anyone.

    But keep safe and make sure they are reputable
  • woodbine
    woodbine Community member Posts: 11,521 Disability Gamechanger
    Hi @OverlyAnxious how are you doing today? I'm sorry to hear about your problems, I take 19 different tablets everyday and if i'm honest have had very few side effects and when I have they have been short lived, until I became ill I never took medication but have had to for 23 years now and they in some cases help keep me alive, something I value above almost everything else.
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  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hi @OverlyAnxious

    How are you?  I hope you have had a nice day in this beautiful weather.

    @janer1967's suggestion of hypnosis is a good one that might help tackle some of the root causes behind your distressing feelings.  

    I can't imagine how you feel on a daily basis but well done for persevering and finding a way to manage.  Have you gone down the route of having a telephone assessment with your local mental health team to explore the options they have available?  


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  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    janer1967 said:
    A very difficult situation to be in and not something I could offer a possible solution for.

    Haver you tried any alternative therapies like hypnosis or similar they may be able to take away the fear

    Experts say fear comes from something that happened to you in the past and if you can tackle this event and out it in perspective the fear will diminish

    There is a couple on This Morning that specialise in this sort of therapy if you have ever watched them I think they are called the Speakmans

    Thanks Jane,

    I don't personally believe this came from a past event as it's been there for as long as I can remember, it was noticeable as far back as playgroup even before school age, but was just assumed to be a 'phase' that I'd grow out of.  Over time I've gone through more 'events' myself and seen relatives go through awful illnesses, lengthy hospital stays and ever-worsening conditions which has added to the fears, but ultimately can't find any starting point for them. 

    Hypnosis has been suggested a few times and I must admit I'm very sceptical of it.  I haven't tried anything like that but it's something I should definitely look into though, especially in app form, I didn't even know that was possible!
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    leeCal said:
    @janer1967 I was going to suggest hypnotherapy too, however a session could be done on cd and then posted, that way @OverlyAnxious wouldn’t need to physically be with someone, that solution might work. 

    As far as SSRIs are concerned I personally didn’t find nausea a problem but slight sleepiness and later weight gain certainly is a long term issue.
    I didn't know weight gain was a possible side effect - that one wouldn't be a negative for me! 

    I'm 6ft and 8 stone...really struggle to get food in due to the risks of it making me ill and there's obviously even more chance of that happening with medication.
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    Have you gone down the route of having a telephone assessment with your local mental health team to explore the options they have available?  
    Ah, I can't use phones either, it's not just face to face but verbal in general that I struggle with which has been another massive challenge regarding mental treatment! 

    By the end of last year I was getting very desperate, I did manage to get a Wellbeing appointment through a few emails instead of the usual telephone call.  However that ended up being face to face which I managed to force myself to but I couldn't get the right information across, was told there was nothing they could do and sent to another F2F, which then forced me on to a 3rd face to face at the 'highest' local mental team.  They just told me there was nothing they could offer for someone in my position.  I even took a letter to that one for them to read, knowing I wouldn't be able to explain it when I was there.  I was very physically ill the morning before that assessment but did manage to get there albeit in a bit of a state.  I can only do things 2 or 3 times max as they seem to get worse each time, which is the opposite of what CBT suggests should happen, I certainly couldn't have done another assessment or session after that one.  I have previously tried F2F CBT twice in the last 10 years but again could only manage 2-3 sessions each time before it got so bad I couldn't even leave the house let alone get to the therapy centre.  I was also assigned telephone CBT once, despite telling them I couldn't use phones, and was immediately discharged from that one as I couldn't answer the first call!  (Utter madness, do they place wheelchair services at the top of 10 flights of stairs and refuse a chair if you can't get there!?)  After events like these it takes me years to build back up to risking it again which is why I have to be so careful with any risks that I take.  As I said above, it's all about damage limitation, I see the long lasting consequences these things cause over and over again.

    Anyway, that last assessment was in January this year and there was never any follow up to it, I didn't even get an assessment report or any suggestion of what to try next.  And then Covid19 started which has worsened all of my conditions.  There's now a very real danger about being near people which reinforces the OCD and illness fears and means there's no chance of me doing anything F2F at all.  I lost all routines where I was forcing myself out roughly every other day and into shops or at least through a 'busy' street twice a week to keep the agoraphobia under some control but that all had to stop.  I had to stop visiting a relative that was really at the end of my possible driving distance and am now not able to get even half way to their house any more.  So basically I'm just stuck at home with my own body now which is far from ideal!  I know that ultimately there is nothing that can be done 'remotely' and that the only way things will change is by me doing things, but I also know that I'm not in a position to risk making things any worse so it's an impossible situation really.



  • Tori_Scope
    Tori_Scope Scope Posts: 12,488 Disability Gamechanger
    That really does sound like a very difficult situation @OverlyAnxious. I'm also sorry that they didn't get back to you after the January assessment, that's very frustrating.

    Do you think it's perhaps worth trying to email the wellbeing team you emailed previously, explaining that phonecall appointments aren't a possibility for you and asking if there is any help they can offer you via email? Unfortunately, I think most mental health professionals are only offering remote treatment in the form of phone or video calls, but you never know. They might be able to send you some advice or resources.

    If CBT isn't working for you, you could also look into other forms of therapy as other members have mentioned. That being said, although a big part of CBT is about taking risks, going against what is natural to you, and challenging your thoughts and behaviours, your therapist should always make you feel safe whilst you do so, so perhaps it was that they were going too quickly for you? In the future, would you feel comfortable telling them that you need to take things a bit more slowly? They should be fine with that.

    I understand what you mean about having to be careful with the risks you take, as you don't want to take one step forward and fall three steps back. I think maybe what you could think about is what would be worse: taking a risk (e.g. venturing further outside, trying a different form of therapy), or living how you're living now, which doesn't seem to be making you very happy. I know that, in reality, it's not that simple, but it's something I've found useful to bear in mind to push myself to take small steps outside of my uncomfortable comfort zone. 

    I don't know if you'll find any of that helpful, but I really do hope you find a way forward :) It feels like an impossible situation now, but things can improve.
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  • newborn
    newborn Community member Posts: 832 Pioneering
    A 5 year old had been badly scalded as a baby, and then at age 4 had needed an unrelated but painful operation,  so he, logically and understandably, associated people in white coats, and the word 'doctor',  with something horrible happening to him.  (He was ordinarily a completely healthy  child, so had absolutely no experience of attending a friendly, known, familiar  g.p. to get  'treats ' of  prescribed sugary medicines. )

    One day at school they told his class (wrongly, without giving  prior notice to parents) that all the children had to go, one by one, into a room alone with someone called  'the school doctor.'  Perfectly sensibly, he ran off and hid till home time.  Anyone with his experience would do the same.  His parents later were told he should see a psychiatric doctor, because in the school doctor's opinion, any child who doesn't like seeing doctors must  be mad, and must be 'treated' for that madness, by being forced to see even more doctors!

    Don't know wnere I saw it, maybe on Scope, but there was something called thelindenmethod.direct (??) which apparently was something devised by someone who had anxiety treatment for decades,  without  improving,  till he discovered something not a treatment,  but a cure. (I don't know anything about it, but maybe it's worth you looking at?)

    The idea of cure, not lifelong treatment,  is gaining ground in various areas.
    Examples:
    A) type 2 diabetes seems to vanish if people  lose one eighth of whatever is their body weight. 
    B) Gastrointestinal troubles can be treated for decades,  including surgery, and doubtless at times the treatment  given is the best and only correct method, but sometimes,  the rather new ideas of FODMAPs may avoid the problems  altogether,  merely by altering food habits.
    C) Anna Runkle does free youtubes on childhood  trauma c.p.t.s.d, including  recent discoveries confirming that niether drugs nor therapists will do anything but harm.  Also that there are myths about C.PTSD.  Curing yourself is best: Not talking, not remembering,  not re-living, and not taking drugs intended for mental illness.
    D) Some apparent learning difficulties vanish simply by using a coloured perspex sheet to oveelay the printed page.


  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    edited August 2020
    I suffered with selective mutism when I was a child and I was never treated for it even though my parents thought I was ‘mad’ , not helpful. It gradually faded as I gained confidence over a period of forty years or so. It still catches me out sometimes even now. 
    It was a nightmare when I was at school and extremely psychologically painful I can assure you. In my case I couldn’t talk to or in front of peers and my education suffered immensely. I could have done with some help but even though we had fairly small class sizes, thirty or so, teachers obviously didn’t notice, they just assumed I wasn’t very bright when I failed to answer questions in class. Suffice to say I hated school.

    Even in my twenties it held me back but as I say, eventually it has almost totally gone. Learning that I was, mostly, the same as others, no better or worse, took me a long time to realise and along with learning skills which others didn’t have helped alleviate things a lot over time.

    so I’m unsure whether intervention would have helped me, perhaps so and it may have helped me overcome the problem sooner. 

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,586 Disability Gamechanger
    leeCal said:

    It was a nightmare when I was at school and extremely psychologically painful I can assure you. In my case I couldn’t talk to or in front of peers and my education suffered immensely. I could have done with some help but even though we had fairly small class sizes, thirty or so, teachers obviously didn’t notice, they just assumed I wasn’t very bright when I failed to answer questions in class. Suffice to say I hated school.
    I've 'spoken' about something similar with another anxious online acquaintance recently.  Both of us are around 30 now but even when we were at school, it just didn't seem to get picked up.  Seems very odd looking back but I guess quiet kids are easy kids, I never had a single detention!  Due to my IBS & OCD issues, (mass bowel evacuation by 7.30am and no food or water until I got home at 3.30pm) I'd be massively lacking in energy throughout the school day, especially when it came to anything physical, but again, it was never mentioned by any teacher.

    I've always found it difficult to speak at all but nearly impossible with more than one person, regardless of how long I've known them.  If anything it's worse now as I try to fight back the reflux at the same time as trying to give an answer that doesn't offend anyone or make me sound like a fool!  I just use text based communication 99% of the time now.  Don't know how I'd have got on if I'd been born 30 years earlier and had no internet!

Brightness