Going med free?

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Going med free?

Postby pinky1 » Sun Jun 15, 2014 9:29 pm

I'm tapering off the pregablin, not for me. I don't want to be a fat, unhappy space cadet who can't enjoy a sex life. I've been very slowly weaning off diazepam for months now, and we're staying at 11mg a day while I come off the pregablin. I've already had gabapentin this year and had horrendous side effects at the lowest dose. I'm still on 30mg Ami's a night but consultant at seizure clinic wanted me off of these in January and mt dr had written to Nuro to ask about topamax and they said I really can't risk upping aim's due to my low seizure threshold. I also have co-codamol everyday and zolpidem as and when. Apart from the zopidem and co-codamol I would be interested to strip it right back. Wean off the diazepam quicker and taper off the ami's then I could see exactly how much these tablets have been helping. Does that make sense?
I use a wheat pack and heat pads. I'm just a bit lost now. I have a referral for a dietician, and my GP goes on Maternity leave in a couple of weeks so I'll be seeing someone else. The awful pain in the soles in my feet is back in the last few days.

I know no one really has any answers but I don't know what to do anymore. Do I push to see neuro and beg to try topamax? Do i annoy a doctor for a referral to alternative therapies place (bearing in mind the consultant at the seizure clinic warned me to be careful of anything I'm prescribed or buy OTC)

Feel like I'm exhausting options since there are so many things I can't take. Shame the tramadol caused the last seizure as i FOUND IT HELPFUL. This only started 2 years ago with a very quick diagnosis so I feel for you guys who have been through this for years.

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Re: Going med free?

Postby Xena » Sun Jun 15, 2014 9:59 pm

I think I might have to go med free, too. Amitriptyline gave me horrible mental side effects, and my G.P is wary of putting me on Gabapentin in case I have the same kind of problems. I have to take Lithium for Bipolar and already take an antidepressant, so need to watch the mixture. I have non Epileptic seizures which are currently in remission so that's another complication. Strong Co-Codamol (Zapain) helps me a little BUT it really upsets my stomach to the point where I can't do much atall. So, like you I'm trying to find other ways. I'm having Reflexology at the moment and that seems to help somewhat :-) .
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Re: Going med free?

Postby Jacky55 » Sun Jun 15, 2014 10:30 pm

Hi pinky1. I would just like to say well done for coming off some of your meds. Gosh, you've really tried so many haven't you. Have you had any bad experiences coming off any of them? I would be really interested to know. I have just slowly weaned myself off from Citalopram, as the combination of meds I'm on was causing problems with serotonin overdose, luckily nothing nasty happened, just felt really doped up. It really is a balancing act with meds isn't it, what works for one person, causes horrendous complications with someone else, which makes it difficult to recommend to others. Also the effects of taking one med alongside another. It's a minefield. I quite often wonder if we're just testing out different combinations for our Gp's own interest. My life saver is Tramadol 50mg, I'm on 8 a day which I take with paracetamol. I take it every 4 hours and it takes away most of the pain, I certainly know when my next dose is due though. I'm so sorry it didn't work for you. You say you're seeing another Gp as yours is away on maternity. You never know, they may be able to help you work out the best meds for you and advice an alternative therapy. I'm wondering if maybe because you're caught up in a whirlwind of pain and medication, it sounds like some calming therapy could help you to relax away and unwind. I hope this helps. Gentle thoughts for you and I hope you can work through this.
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Re: Going med free?

Postby migrembe » Mon Jun 16, 2014 11:09 am

Being a staff nurse and having Dr's who have no idea what they are talking about, if they cannot cure it with medications then they are dumb founded and lost, i decided to wean myself off all my medication, one at a time. It took me 6 weeks to stop everything i was on at the time, but then i found i needed something just to help, but far less than i had been taking.

I had horrendous side effects from Amitryptaline, Gabapentin, Pregablin, Tramadol, Diclofenac, Naproxen, Citalopram (which did work for my crazy head but burnt my stomach lining) and now also mirtazapine is also causing problems and i need to stop those too - but the Dr knows about that one. I didn't take everything at once it was more of a rolling conveyor belt, one after another.

I actually only take co-codamol 30/500 x 2 up to 3 times a day and the occasional Ibuprofen or naproxen. Is the pain any worse for less? No not really! Was the pain any better for more? No not really! I have found Ibuprofen topical gel is good on my hands and feet and joints such as my knees and a very hot bath when things are really bad. I also meditate every day and I've just started practicing twice a day.

I do not sleep well. I dream horrendous nightmares most nights. The fatigue is beyond me. I class myself as a non-functioning adult. I can no longer work, cook, clean, eat or do much of anything for any amount of time. Pacing is a good thing but only when you can do something in the first place. People will read this and probably think i am very depressed and i guess i am but today is a good day.

Pain killers do not work for FM and serotonin re-uptake inhibitors in none pharmaceutical trials were shown not to work either. In other words they only work because the pharmaceutical companies say they do. A good but hefty book to read is Doctoring the Mind by Richard Benthall (?).

Can GP's actually prescribe alternative treatments?

Good luck with it all. Personally i would try going with as few medications as you can, but try and find an alternative treatment that may help, such as meditation or acupuncture.
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Re: Going med free?

Postby pinky1 » Tue Jun 17, 2014 1:31 pm

Thanks everyone,
I'm very sore today. I think this may be my first proper flare, probably a mild one compared to some.
Thing is I HAVE to be able to function as I'm a single mummy to a 3 year old a and I have very little support. But I also don't see the point in being on meds that are either doing nothing or the side effects are outweighing the benefits.
Going to ask my GP about a referral to a place in Aberdeen called camphill which does alternative therapies for lots of illnesses. I may as well come
Off the Ami's. May ask for a higher dose of co-codamol. I'll be off the diazepam by the end of the year.
I don't have a bath but I do have a seat that my OT have me for the shower.
A lotto win would be nice. A big house with a cleaner and a chef. And a lovely warm pool haha

Oh the lovely dream!!! Haha
It's wheat bag time!!!
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