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Thread: Pregabalin or effects of long term anxiety?

  1. #1
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    Pregabalin or effects of long term anxiety?

    My 30 year old autistic daughter has been on pregabalin since March and is currently on 100mg in the morning and 100mg in the evening.

    She has had constant headaches, general aches and pains, palpitations, derealisation and has developed a fear of going in the car which she hasn't had before.

    She is terrified of what my son is going to do, mental health-wise (he was sectioned last year) and is also very frightened of getting covid (she had contamination OCD before the pandemic)

    There's a hell of a lot to contend with at home but I really don't think the meds are helping at all. Maybe they are making things worse?

    She can't take SSRIs as she quickly develops severe neutropenia and has to isolate. SNRIs have little effect.

    I know there are no answers but just wanted to ask about people's experiences of pregabalin.

    Thanks for any advice..

  2. #2
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    Re: Pregabalin or effects of long term anxiety?

    Quote Originally Posted by pulisa View Post
    There's a hell of a lot to contend with at home but I really don't think the meds are helping at all. Maybe they are making things worse?
    It's impossible to really know how much might be stress and how much med, but pregabalin could be making it worse, or maybe just not really doing anything to help. Has she ever been on benzodiazepines and if so did she have similar issues, pulisa?

    She can't take SSRIs as she quickly develops severe neutropenia and has to isolate. SNRIs have little effect.
    Have TCAs been tried?
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  3. #3
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    Re: Pregabalin or effects of long term anxiety?

    She's been on diazepam which really helps..but the aim was that the pregabalin should lessen the need for benzos. Alprazolam in the past was the best benzo for her but it's banned now in the UK.

    She has been referred for an ECG in a fortnight. Because she's between services ie too able for LD MH services yet not accepted by the community MH services due to her diagnosis- she can't see a psychiatrist. The GPs wouldn't prescribe anafranil which is probably my drug of choice. I think there is a problem with supply here anyway.

    Thanks for your response, Ian.

  4. #4
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    Re: Pregabalin or effects of long term anxiety?

    I'm sorry you; your daughter and son are struggling right now, pulisa.

    RE the Pregabalin: In my case, Gabapentin did work well in the beginning but lost effectiveness rather quickly and I'm sorry to say there were withdrawal side effects coming off it; so she may need to taper off very slowly.

    I hope things improve.

  5. #5
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    Re: Pregabalin or effects of long term anxiety?

    Hey Pulisa,

    Sounds really tough for you at home. I hope you are managing ok. I took Pregabalin for about 9 months. I think my max does was 450mg per day. I think 200mg is quite a low dose, but dont quote me on that. I certainly experienced the headaches, aside from that I didn't notice anything particularly negative. I think it helped me a little, with much less side effects than ADs - I ran the London marathon while on pregabalin so I can't have been too bad Despite the reports I found it ok to come off of - much easier than ADs. Im actually contemplating going back on it. Like your daughter the SNRI Im taking is no doing anything positive.

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    Re: Pregabalin or effects of long term anxiety?

    Thank you both so much for your input..I really appreciate your advice.

    I know she won't want to increase the dose because it's a controlled drug and she fears getting addicted. She doesn't have many options medication-wise and circumstances at home really don't help so I suppose she'll just have to stick it out and wait for the ECG results. I'm pretty sure it's all anxiety though and I need to find a way to make things less terrifying for her.

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    Re: Pregabalin or effects of long term anxiety?

    Quote Originally Posted by pulisa View Post
    She's been on diazepam which really helps..but the aim was that the pregabalin should lessen the need for benzos.
    I asked about BZDs because they and pregabalin do essentially the same thing, just from opposite directions. The fact your daughter does well on BZDs suggests the pregabalin may not be causing of the problems she's having, though this isn't definitive.

    She has been referred for an ECG in a fortnight. Because she's between services ie too able for LD MH services yet not accepted by the community MH services due to her diagnosis- she can't see a psychiatrist.
    So bureaucracy gone mad creating huge cracks for folk to fall into never to be seen again.

    The GPs wouldn't prescribe anafranil which is probably my drug of choice. I think there is a problem with supply here anyway.
    Given the OCD and some evidence of positive effects on autism anafranil would seem to be the obvious choice, however, it is as potent a serotonin reuptake inhibitor as the most potent SSRI which could potentially trigger the same neutropenia problem as the SSRIs, so caution is warranted, imo. A TCA with lower serotonin transporter affinity such as amitriptyline might be the better option.

    Has the GP offered an explanation for refusing to prescribe anafranil other than supply problems?

    I know she won't want to increase the dose because it's a controlled drug and she fears getting addicted.
    A higher dose won't increase the dependency risk, plus some ADs can be at least as hard to stop, but now might not be the time to make these arguments.
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    The opinions expressed above are based on my observations and, where applicable, interpretation of cited data and are general in nature. Consult your physician before acting on anything stated.

  8. #8
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    Re: Pregabalin or effects of long term anxiety?

    A GP wouldn't prescribe anafranil here. It would be up to a psychiatrist and we can't access one on the NHS. I don't rate the NHS psych anyway having had many appointments with her for my son.
    I'm pretty sure my daughter's issues are down to her situation and not as a result of the pregabalin. I think she needs to stick with preg as it's not affecting her bloods and seems to be the best med option. She really doesn't want to risk severe neutropenia again with covid being so prevalent.

    Thanks, Ian. Am very grateful for your advice.

  9. #9
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    Re: Pregabalin or effects of long term anxiety?

    The ECG today has shown an arrthymia so she has to speak to the GP on Friday and see where we go from here. I hope it's the pregabalin or a defective ECG machine but I suppose she'll be offered a 24 hour monitor to assess it more carefully.

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    Re: Pregabalin or effects of long term anxiety?

    Quote Originally Posted by pulisa View Post
    The ECG today has shown an arrthymia so she has to speak to the GP on Friday and see where we go from here. I hope it's the pregabalin or a defective ECG machine but I suppose she'll be offered a 24 hour monitor to assess it more carefully.
    Arrhythmias, including atrial and ventricular fibrillation are rare potential pregabalin side-effects mostly affecting the elderly so while it is a possibly I wouldn't just assume it was the cause without further investigation, pulisa. Is your daughter on any other medication?
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    The opinions expressed above are based on my observations and, where applicable, interpretation of cited data and are general in nature. Consult your physician before acting on anything stated.

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