from uk?

[Hand of Blood]

Can i just ask is there anyone from the uk here? is the nhs helping you ..... because it isnt helping me at all it feels like a big waste of time everytime i explain things to docs and nero. They dont seem to commuicate well!
I been trying to get off tegretol for 4ish years now and still fighting for someone to help me! .... i feel so at a loosing battle.... when i say about side effects they would say you dont get that with this med... but its on the leaflet!.... then i say about auras i get them sometimes... they say no u cant get them unless u have a tonic clonic! its alll over the net that u can and the side effects! i think they hate me coz i keep telling them what i found out and i dont think they like it!

i feel like im going mad sometimes! no1 will help me i get maybes i get a we'll see. i go almost every week but nothing gets done! the side effects are so unbearable! I really dont know what to do anymore.... go cold turkey?

 

[Loopy Lou]

I'm glad that the NHS is free, otherwise i don't know how i'd manage. On the other hand, it can be terrible for service. Overloaded caseloads for doctors and specialists mean that people often "fall through the cracks", get overlooked or sometimes even completely ignored. Short appointments mean that it can sometimes be impossible to get across everything you need to discuss, never mind getting them to explain stuff to you.

Not to mention losing test results, taking months or sometimes over a year for tests etc. I'm off tomorrow to redo a blood test i had done in November because they've lost the results somewhere between my docs, my neurologists and the lab.

Which hospital do you go to HOB? I had a bad experience with the paramedics from the Belfast one. They came out to me when i had a seizure on the night of 12th July, i couldn't really remember it but my cousin told me later that they basically thought i was just "another drunk prod" because i was coming out of it and in the post-ictal stage when they got there.

Is there any way you can change hospital and see another neurologist? Or even change to a different one at the same hospital? My neuro was telling me the same thing about some of my side effects from my Tegretol until he actually looked it up himself, then he believed me. I hope to get off it too.

 

[Hand of Blood]

im at antrim... but currently trying to get a new nero.... docs said will take longer because im already with antrim lol

that guy up there didnt listen at all.... i tried 4 years for him to hear me out on my side effects i even wrote a diary of how i feel each day and he just handed me it stright back i said thats the final straw. I think im being ignored because all my tests i got to test for epilsey came back fine.... alot of docs etc dont think i have it, makes me mad coz im having tonic clonic sezures did for years then had 4 years free then had 3 or 4 after i had my boy and now next month il be yr free so fingers crossed. What made me laugh was when i first went to my nero he told me over and over its panic attacks.... hummmmm i do get panic attacks but i dont go into a tonic clonic sezure when having them grrrrrrrrr

what hospital are you at now?

 

[Loopy Lou]

Well I'm currently living in England again for the last 4 years, my neurologist is in Preston. It's a little far away but I've been told the neuro centre there is much better than the blackpool hospital.

I think my neuro will refuse to take me off Tegretol now because I don't think I've had a tonic clonic since about October. The side effects are awful though and I still have partial seizures.

 

[Dignan]

I'm not from the UK, but I can sympathize. There are so many docs that are arrogant morons. The amount they do NOT know is sometimes hard to believe considering this is their job.

I was on Tegretol for 2.5 years. After two years I started to get an intermittent rash that, when it was visible, would itch like crazy. Unfortunately, by the time I'd get to the doc it would disappear. I had a neuro tell me that it COULD NOT be the Tegretol because I would have had the rash from day one and it wouldn't be intermittent.

I had to live with it for 6 months as he kept asking stupid questions like have you changed detergents lately? Maybe that is the cause of your rash.. I thought, what an idiot. I am paying him how much so he can take a guess??

Anyway, I had to fire him and find another doc who immediately switched me to Dilantin. And guess what? The problem immediately went away.

Stick to your guns and fire your doc if you have to do so, but make sure you are HEARD!!

:rock:

 

[Loopy Lou]

Unfortunately it's not so simple here as firing a doctor as it's not us that pays them. Well, not directly anyway, it's through taxes. If we refused to go to appointments with specific doctors then they'd assume we're non-compliant and just take us off that doctor's patient list without replacing them.

To get a new neurologist we would have to wait months and months (possibly a couple of years) to get a new one assigned to us by the NHS.

 

[Dignan]

Yes, nothing is ever easy is it? Even over here, it can take forever to find someone who will listen and believe what you are saying, even though it is easier for us to leave one doc and go to another.

 

[Crash]

Hi HOB im from scotland,im with you on the communication between doctors and nueros.My nuero if i can remain seizure free for another few months,taking me up to two and a half years then shes gonna think very hard about reducing my meds.But i mentioned this to my doc and he near fell of his seat and said no way its taken us this long to get your meds right,we aint touching them.This is when the nuero agrees with me that my meds are to high due to a couple other issues.

So at the end of the day im not sure who to belive,ive got the nuero soon i hope,its been almost a year so i guess ill just play it by ear for the moment.

 

[Dignan]

In your case (with two docs not agreeing) you have to decide what you want to do, but if you decide to go off of them, be prepared in case it doesn't work out and have a plan with your doc which med and what dosage you will take if you have to go back onto drugs.

At least you have the choice.

 

[nicholas:)]

It's been a battle for me with the Gp, then the first Neurologist, but the second Neurologist has been helpful- well she appears to listen! I keep presenting them with my seizure diary and graphs and I have learned to get in there with the first say and use a tone of voice that is commanding respect and to be listened to.

I do not advise this, but I play around with my meds to some degree- I know how my body feels on any given dose. I feel okay at the moment so I shall try to stick to what I am on (Tegretol 800mg and Clonazepam 5mg) until I see my neurologist at the end of March.

Good Luck