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Medical Forum / Diseases and Disorders / Epilepsy / February 2004BRAIN FOG !
I am going to see my doctor tonight in order to get my meds reduced. I booked the appointment last week. I have been wound up all day about this: now I am all prepared. I even have my notes written down on a piece of paper - how I am fed up with the brain fog, the loss of executive function, the tiredness, word retrieval problems and the memory loss. The side effects of the Tegretol are making my life a misery and I can't do my job properly. Maybe I can't get the face recognition back, but I ought to be able to salvage something from this mess. It is raining, but the clinic is not far away so I tuck a book into my waterproof jacket and off I go. They are rebuilding part of the clinic and as I've just moved it's only my second visit, so I take a while to find Reception. "Hello. I have an appointment with Dr.****** at 5:20" >"Your name?" "Mr.**********" She types into the machine. >"Erm..." {frowns, then types a bit more} >"Actually, Mr Thomas, your appointment's tomorrow. 5:20, but on >Wednesday 18th. You got the time right, wrong day." I suppose I have to laugh?  SignatureMalcolm I too am on Tegritol and have brain fog.... Most times I can control it or at least learn to live within the paramiters of the meds but if I am tired or worn down I am exactly how you feel... Lose control to think like I used to and know I can and just feel horible.. I am on 800mgs per day and have been for 15 years ..I tried to go off once "with doctors assistance" and with every reduction I couldn't believe how clear my mind became and I was able to think "crisp" if that makes sense.. I had a seizure and eventually had to go back to full meds and hate the feeling of the fog and feel for you... see if you can adjust your levels but remember there is a fine line between controlling epilepsy and having epilepsy control you! cheers. > I am going to see my doctor tonight in order to get my meds reduced. I > booked the appointment last week. [quoted text clipped - 30 lines] > -- > Malcolm > I am going to see my doctor tonight in order to get my meds reduced. I > booked the appointment last week. [quoted text clipped - 27 lines] > > I suppose I have to laugh? Yes. That's what I did when I rang the Dental Institute to get the exact time of my appointment and was told it was the day before. Actually I didn't, I was mortified. I've never, ever missed an appointment before and they're very keen. Luckily she could see from my long record that I'd never missed nor even cancelled or postponed before. I wish I could have laughed. And I didn't have the excuse of meds. Mary >> I suppose I have to laugh? > [quoted text clipped - 9 lines] > >Mary I just thought it was one of those unbelievable 'This can't be happening, life isn't like this' events. I go to the doctors to clear the brain fog and the brain fog makes me get the day wrong. I was a safe no-licence motorbike driver for years but got stopped at a random police check. Whilst it went through court I bought a bicycle to keep the law... and was run down by a lorry on the open road six days later. I remember sitting in hospital thinking 'life isn't like this, this can't be real'. Tomorrow I will not forget to turn up at 5:20pm. I shall push and push and push to get my meds reduced or changed or come off them or ***anything*** before they drive me OTT. Even though he is my new GP I shall accept a "That's all we can do, sorry" SignatureMalcolm "M" <webmaster@need.to.remain.anon> wrote in message > Tomorrow I will not forget to turn up at 5:20pm. I shall push and push > and push to get my meds reduced or changed or come off them or > ***anything*** before they drive me OTT. Even though he is my new GP I > shall accept a "That's all we can do, sorry" I'll be thinking of you ... Let us know. Mary It's like remembering passwords. I have a hell of a time of it. That's why I've used the same password (for every possible account) for years, even though 'they' warn against doing that. My school has a policy that forces you to change your password every 60 days and I hate it. First of all, I can't come up with a new one, second I keep typing my 'old' one for days or weeks after changing. And don't get me started on pin-numbers... - Charlie > I am going to see my doctor tonight in order to get my meds reduced. I > booked the appointment last week. [quoted text clipped - 27 lines] > > I suppose I have to laugh? >It's like remembering passwords. I have a hell of a time of it. That's why >I've used the same password (for every possible account) for years, even [quoted text clipped - 5 lines] > >- Charlie Don't worry - I don't know my own telephone number and I've lived here for five months now. And I am completely with you on the password situation. The new chipped cashpoint cards allow you to change the PIN :-) SignatureMalcolm I never have any problems with passwords or pins. I keep a set of three kids I have trained for this purpose. You wouldn't believe the trouble it saves (although I write on the monitor too). Of course you have to feed them enormous amounts and put up with eye rolling, but it works. They also have developed great skill at getting the keys out of locked cars over the years too. >I never have any problems with passwords or pins. I keep a set of three kids >I have trained for this purpose. You wouldn't believe the trouble it saves [quoted text clipped - 5 lines] >They also have developed great skill at getting the keys out of locked cars >over the years too. Thank you - I shall ask the doctor for a prescription in 54 minutes time. Tick, tock. Tick tock. Tick, tock... SignatureMalcolm > X-No-Archive: yes > >I never have any problems with passwords or pins. I keep a set of three kids [quoted text clipped - 11 lines] > > Tick, tock. Tick tock. Tick, tock... How did it go? Mary > X-No-Archive: yes > >I never have any problems with passwords or pins. I keep a set of three kids [quoted text clipped - 11 lines] > > Tick, tock. Tick tock. Tick, tock... WELL?????????? Mary >WELL?????????? Now that I've cooled down after what I was told yesterday about having to surrender my driving licence in order to taper off my meds (both the NSE and Epilepsy action say it's a *recommendation* not a law, and the DVLA cannot force me to take medication), I thought you might appreciate the following exchange which took place with the GP yesterday: "I see there's also an antidepressant listed here. What's that for?" <shrug> "Epilepsy and depression seem to go hand in hand" "I don't know whether you've ever heard about ECT - electroconvulsive therapy, when they give people convulsions? It cures their depression. So having seizures is actually good for depression." I couldn't resist the obvious sarcy answer: "Fine, so I'll stop the meds, go into Status and I can get rid of the anti-depressants as well." Somehow I think this new GP is going to be a bit of a problem. SignatureMalcolm Hi Malcom, Don't you think it would be the responsible thing to do as it's possible you may have seizures during the period of med reduction? You don't necessarily need to surrender your license, but avoiding driving just might save a life, including your own. I'd hate to see what happened to me happen to you. It's pretty hard to live with the knowledge that you cost someone their life when it could have been avoided. "Suicide bombers for hire, own car, highest bid secures." sounds appropriate for someone driving half a ton of steel when they're in a condition where they can conceivably lose awareness of what they're doing and lose control of the car. Hope the med reduction goes well for you. Darryl. -- To reply, change daryl to darryl in address. "It's all fun and games till someone loses an eye" Quote: My Mum > >WELL?????????? > [quoted text clipped - 20 lines] > -- > Malcolm >Hi Malcom, > >Don't you think it would be the responsible thing to do as it's possible you >may have seizures during the period of med reduction? I am aware of the problems and the possibilities, but I can only imagine a hint what it must be like to be in your position - you have my sympathies, even though they cannot turn the clock back. I only drive for about 15 minutes each day (about ten miles - I bought a house fairly close to my new school just in case things went wrong). But what amazed me yesterday was the fact the GP thought that because ECT was previously used to treat depression, then having epileptic seizures was going to be a solution for TLE induced depression. Therefore having seizures must be good for me. A doctor who thinks that epilepsy is the same as having ECT is a MEGAJERK and he is going to be treating me! All he has done is *reduce* the anti-depressants (SARC) Oh, that'll make me happy (/SARC) and told me to come back in a month. He obviously does not know what he is doing, did not know half of the meds I mentioned at our meeting (or what Status meant), and maybe he has no other Ep patients? If there was some sort of council for medical incompetence in the UK I would send them his name for appraisal. Maybe I could contact one of the UK groups to write to him and re-educate him on such matters? SignatureMalcolm > >WELL?????????? > [quoted text clipped - 11 lines] > therapy, when they give people convulsions? It cures their depression. > So having seizures is actually good for depression." NO!!!!!!!!!! Unbelieveable ... > I couldn't resist the obvious sarcy answer: > > "Fine, so I'll stop the meds, go into Status and I can get rid of the > anti-depressants as well." > > Somehow I think this new GP is going to be a bit of a problem. I suspect that you're going to be his problem ... and quite rightly so. Thanks for this post and I'm glad you've recovered your composure - but I now understand why you were in a state. Mary >Thanks for this post and I'm glad you've recovered your composure - but I >now understand why you were in a state. > >Mary Mary, Thanks for your understanding - I hope you can see why I freaked out, and apologies who have read this text on the mailing list. I need to find a solution. This guy isn't going to be very supportive of the medical/psychiatric needs of patients with epilepsy, is he? I am on anti-depressants(AD) for a reason and don't want to go back there. I *think* the clinic operates like my last one, ie, files are kept on computer and I see whichever doctor is available. He had none of my records (except the repeat script I gave them in September). Maybe if I ask the receptionist who I'm being booked with when I make an appt, and I just say "NO" if she suggests this guy, I can get round the problem? I've always trusted my GP in the past - I've never met one who proved to be such an uninformed unsympathetic idiot within five minutes. He reduced the AD (because he thought having seizures would be good for me!) but I have a stock for a couple of months. He did nothing about the Teggie/Frisium dose and didn't realise that the brain-fog problems started *before* I went on AD. Two questions for UK readers: 1) How do I change my GP/practice in the UK without appearing rude? 2) How much does it cost to go private in UK? It's a long standing condition so it's *way* too late to get medical insurance like BUPA. Regards... SignatureMalcolm > Thanks for your understanding - I hope you can see why I freaked out, I can. This is a support group. > I *think* the clinic operates like my last one, ie, files are kept on > computer and I see whichever doctor is available. You should be able to make an appointment with your doctor of choice - unless it's urgent. > He had none of my > records (except the repeat script I gave them in September). Maybe if I > ask the receptionist who I'm being booked with when I make an appt, and > I just say "NO" if she suggests this guy, I can get round the problem? Tell the receptionist who you want. If you don't like that one choose another from the panel next time. But you must understand that a GP isn't an experit in any particular field as a rule - and they're not superhuman either. They're as fallible as you and me. You can't claim to know everything about the subjects you teach, can you? > I've always trusted my GP in the past - I've never met one who proved to > be such an uninformed unsympathetic idiot within five minutes. The unsympathetic part is the worst. But I've met unsympathetic and clumsy specialists, one told me recently that the good news was that I was cured of cancer. He got an earful from me and I don't think he'll do it again because I also told my specialist nurse about it. > He > reduced the AD (because he thought having seizures would be good for > me!) but I have a stock for a couple of months. He did nothing about the > Teggie/Frisium dose and didn't realise that the brain-fog problems > started *before* I went on AD. Do you have a specialist consultant? > Two questions for UK readers: > > 1) How do I change my GP/practice in the UK without appearing rude? Just do it. Rudeness doesn't enter into it. It might be better to do it before you've built up a reputation as an awkward customer though. Some doctors can hold grudges - as can patients. > 2) How much does it cost to go private in UK? It's a long standing > condition so it's *way* too late to get medical insurance like BUPA. No idea. Possibly not as much as you'd think - but a private doctor might now know any more than this chap, many NHS doctors also do private work. Keep in touch. Your experiences could be valuable for others. Mary ??????????????????????????????????????????????????????????????????????? IS IT TRUE that after almost ten years seizure free, i have to give up my hard-earned driving licence for a year AGAIN in order to come **OFF** the medication?????? My new GP said he wasnt sure as the dvla keep sending round new documents all the time and was unwilling to manage my drug regime. He has referred me to the local neuro (I thought I had one up in London at the Nat?). no licence means no insurance means no road tax so he says I have to sell my car and motorbike for year. And how do I get to work, having bought a house out of town? 1984 came 20 years too late Mr Orwell. "Stay on the psycho-drugs or we'll take away your job." f.ck THEM, I'LL MANAGE MY OWN DRUGS, and send them the spares ground into white powder in leaky envelopes. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Suicide bombers for hire, own car, highest bid secures. SignatureMalcolm > I never have any problems with passwords or pins. I keep a set of three kids > I have trained for this purpose. You wouldn't believe the trouble it saves > (although I write on the monitor too). > > Of course you have to feed them enormous amounts and put up with eye > rolling, but it works. Both those come with motherhood. But I'm not trailing kids around with me just so that I can use pins. > They also have developed great skill at getting the keys out of locked cars > over the years too. Oh, I did that for myself after watching - admittedly a teenager - doing it in a car park. By request on my car by the way ... We have our own skills though, don't we. No amount of Life can give them the same range as we have developed :-) Mary > It's like remembering passwords. I have a hell of a time of it. That's why > I've used the same password (for every possible account) for years, even > though 'they' warn against doing that. Me too. > My school has a policy that forces > you to change your password every 60 days and I hate it. First of all, I > can't come up with a new one, second I keep typing my 'old' one for days or > weeks after changing. Mu on-line bank used to insist on my changing them. I wrote them on the computer monitor, crossing out the old ones. > And don't get me started on pin-numbers... I only have one of those too ... But what about those passwords allocated to you which are a mixture of letters and numbers? Impossible for anyone, I'd have thought. But Spouse can remember his National Insurance - or is it Health - number. It's hard living with perfection. Mary > - Charlie > [quoted text clipped - 29 lines] > > > > I suppose I have to laugh? > It's like remembering passwords. I have a hell of a time of it. That's > why I've used the same password (for every possible account) for > years, even though 'they' warn against doing that. My school has a > policy that forces you to change your password every 60 days and I > hate it. First of all, I can't come up with a new one, second I keep > typing my 'old' one for days or weeks after changing. Suggestion: Change it, then change it back. That's what I do, because I can never remember anything but my two passwords. I use one ultra-secret one for confidential transactions, and another very simple, easily breakable one for non-confidential ones, like signing up for newsletters. Chakolate SignatureThe real art of conversation is not only to say the right thing at the right place but to leave unsaid the wrong thing at the tempting moment. --Dorothy Nevill > Suggestion: Change it, then change it back. That's what I do, because I > can never remember anything but my two passwords. I use one ultra-secret > one for confidential transactions, and another very simple, easily > breakable one for non-confidential ones, like signing up for newsletters. > > Chakolate I wish it were that simple. Unfortunately my school insist that you cannot do that. No less than /three/ times you have to change to a new pass before you can go back to the original. For some strange reason, they're really big on security. Malcolm, I can't remember my own phonenumber(s) either. That's why I have them coded into my cellphone so I can pull them up, should people ask for them. Mary, I don't exactly have any passwords I didn't choose myself with a combination of letters and numbers, but some places (like my netbank) insist that you choose both numbers and letters. For that I use l337-speak. It's just easier to remember if 0 (zero) is O (oh) and 3 is E and 1 is I. But it's still a hell of a thing remembering all this. Recently, touchpads for credit/debit cards changed here (in Denmark) and a lot of them switched around so that the new ones have 1, 2 and 3 on top rather than the bottom, which /really/ forces you to think: "uuuum.. What's my pin again?" Because it just sort of settles in your fingers and you don't /think/ about the number when you punch it in.. -Charlie > > Suggestion: Change it, then change it back. That's what I do, because I > > can never remember anything but my two passwords. I use one ultra-secret [quoted text clipped - 23 lines] > my pin again?" Because it just sort of settles in your fingers and you don't > /think/ about the number when you punch it in.. My brain is fogged just reading all this! But thanks, I'm sure someone will find it helpful :-) Mary > -Charlie
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