No more good days.

woodbine

For the last few years I have suffered from side effects caused by what one GP described as a side effect of the "industrial amounts of industrial strength medication" I take every day, in total 34 tablets of 19 different meds. To write this I have to have one eye closed. to read anything I have to close one eye, my balance doesn't exist and my speech so slurred it sounds like I'm drunk.

In the beginning it would be like this for a day or two then I would be ok for a few days, not it is almost everyday.

The answer might be reduce my medication but it keeps me alive, stops my epilepsy from putting me in hospital every week, keeps my diabetes at a manageable level, stops me having more strokes or a heart attack the list goes on.

I rarely suffer from self pity but it's getting to the point now where it's ruining my life.
Thanks for reading xx

Sandy_123

Hi @woodbine sorry things not going great at the moment, have you spoke to the Dr to see if alternatives might help better, might be worth exploring 

Alex_Alumni

I'm sorry to hear how much of a tough time you're having lately @woodbine, I would encourage you to have a chat with your GP about everything, and see what options you could pursue. 

It can be difficult to feel good when things feel unmanageable, but if there's anything we can do to help or support you, please do ask

janer1967

Sorry to read this I can certainly empathise its very hard to balance when your vision  is affected one of big reasons I don't feel safe using my prosthetic  leg 

Sugar levels massively impact vision as well sl the better that is controlled might help 

Try contacting local sensory team they are great for helping you adjust 

I know it's not like you to get down like this it's hard when you seem to be seeing deteriation 

Are there any alternative medications that could help I'm not knowledgeable on these bur could be worth exploring with gp 

Take care you know we are here if you want any support 

leeCal

I literally wish you well @woodbine, I hope things can improve for you I really do.

Biblioklept

I so very wish I had some useful advice but I don't, what an awful balancing act between your health and your quality of life. I'm sorry @woodbine I understand why it's getting you down.
Are you under any specialists that can look at different medicines or other ways to help you?? 

66Mustang

Sorry @woodbine I don’t have any further suggestions to the above but just to say I’m thinking of you and wish you all the best.

woodbine

Thank you all for your support and advice, sadly not much can be done as I need to take all the meds I do take, I've discussed this with at least three different GP's non of them offered any help or ideas, and my last consultant was less than useless.
xx

emancherry33

@woodbine so sorry to hear about your troubles, on the epilepsy side of things I was misdiagnosed with epilepsy for years and given horrible anti epileptic drugs for years which never helped. Have you ever had any genetic tests to find out what type of epilepsy or genetic mutations you have ?  My genetic tests took over 6 months each before I found out I had a genetic mutation not epilepsy and are no longer on any anti epileptic drugs which has improved my health dramatically. Maybe one thing that may help your epilepsy?

woodbine

I had two strokes the second lead to the start of my seizures I also had a cyst on my brain, the operation to reduce it went wrong and they had to remove it so I have to scars on my brain, I get your point but there has never been any doubt about my epilepsy, at the start 24 years ago I was having a dozen seizures a day it was only when the meds kicked in that they reduced to 3 tonic seizures a week and 4 or 5 absence seizures a day, but thanks for your ideas.
I should add that I have since had another half a dozen strokes that haven't helped the situation.

Lisatho11987777

Sorry to hear this @woodbine always here for you x

SueHeath

Nothing i can say @woodbine to make things better, so wish i had a magic wand, you are a big part of this forum and have a lot of well wishers, stay strong xx

Ross_Alumni

Morning @woodbine

How are you getting on?

It's lovely to see all the supportive replies that have been posted on this thread, I hope they help  

woodbine

@Ross_Scope No change really, as you say the support on here is world class, it used to be that I'd get a week when it was really bad followed by a few days off (so to speak) now it's bad all the time.

Ross_Alumni

It's a shame that it's now bad all the time, that must get quite frustrating at times @woodbine. Of course always ensure to look after yourself as best as possible, and we're always here if you need a chat.

Biblioklept

woodbine said:

@Ross_Scope No change really, as you say the support on here is world class, it used to be that I'd get a week when it was really bad followed by a few days off (so to speak) now it's bad all the time.

Do they know why it's gotten worse could it be something else on top or is it definitely a deterioration and build of up meds or something? I hope you're finding a way to be happy despite everything you've got going on

woodbine

Biblioklept said:

woodbine said:

@Ross_Scope No change really, as you say the support on here is world class, it used to be that I'd get a week when it was really bad followed by a few days off (so to speak) now it's bad all the time.

Do they know why it's gotten worse could it be something else on top or is it definitely a deterioration and build of up meds or something? I hope you're finding a way to be happy despite everything you've got going on

A few years back my optician said he thought it was "optic migraine" my GP at the time literally said that was "rubbish" I think its one of those things where you can't win.

Karen7788

Sending my best wishes to you @woodbine, I sincerely hope that things improve for you. 

Biblioklept

woodbine said:

Biblioklept said:

woodbine said:

@Ross_Scope No change really, as you say the support on here is world class, it used to be that I'd get a week when it was really bad followed by a few days off (so to speak) now it's bad all the time.

Do they know why it's gotten worse could it be something else on top or is it definitely a deterioration and build of up meds or something? I hope you're finding a way to be happy despite everything you've got going on

A few years back my optician said he thought it was "optic migraine" my GP at the time literally said that was "rubbish" I think its one of those things where you can't win.

That's even worse when they don't agree and you're just left confused!!
If there anything you've noticed yourself that makes things worse or better or gives you slightly better days?