Terminal cancer support please

[Nystagmite]

Urgh.

 

Back to see GP today as requested 2 weeks ago. Talking therapy as been suggested. Because none of the medication works, the GP thinking I'm imagining it.

 

Because of course, being put on anti-epilepsy drugs with some absolutely horrid side effects (thankfully, I only have the mild ones) and wanting to throw up all the time is fun...

 

The argument is purely because there's no change in my MRI scan. I'm not medically trained (although, it feels as though I know more about what's wrong than these doctors) but I know that MRI scans don't show pain or any issues relating to pressure within the brain. Now the fun task of asking for my brain pressure to be checked without sounding like a hypochrondriac. (which I'm convinced a lot of doctors think I am)

 

If I didn't have this illness, I would be working. Do the doctors really think I want to be on benefits instead of working?

[think about it]

Hi Nystagmite, sorry to read that the treatment didn't give you the results you were looking for. Now, I might be very wrong here but I think, based on a conversation I had with one of my colleagues here a while back that there is a way of judging intercranial pressure on an MRI as the brain will 'cone' into the space occupied by the spinal cord. If there's no compression then the brain will/should rest normally within the skull. There's a source of info here which might be useful to give to your GP http://www.patient.co.uk/doctor/Rising-Intracranial-Pressure.htm

 

Now, like I said, there's a huge chance that I'm wrong as it's recalled from a conversation a long time ago but it might give you the basis for a follow up discussion with your GP.

 

Take care and Merry Christmas!

[Nystagmite]

Thanks. That's useful to know. I've just spent some of the afternoon researching how they measure the pressure. I know this is the cause of the problem. (I don't have pain as such now, just a feeling of too much pressure) At least one doctor claims it's "normal". Of course, I am aware that there has to be a certain amount of pressure in my brain. But not to the extent wher I want throw up.

 

Merry Christmas to you too.

[sillygirl1]

Have you explored the possibility the pressure could be caused by a compressed nerve, look up cervical spine compression problems and you might be surprised. If a nerve is 'squashed' between a couple of vertabrae it can cause that sort of feeling, and interefere with your eyesight.

[Nystagmite]

That has never occurred to me. I know they did look at my spine a few years and found nothing wrong.

[Nystagmite]

Another update from me:

Been on Topamax for almost 7 months now. Each time I've gone to pick up my prescription, I've had different side effects, which is just weird.

 

Anyway, I was away over the weekend and couldn't stop drinking, which was starting to get rather concerning. (as was the lack of needing the toilet) No matter how much I was drinking, my mouth was still really dry. (ok, it was rather warm in London)

 

Came back Tuesday and after talking to dad, he told me I need to go back to the doctors. I went on Wednesday and asked to see someone and I was asked what the issue was. I explained that I'm really dehydrated (i'm not talking about the type where if you have a drink, you're then ok - I have some 4 litres of water on Saturday and was still feeling dehydrated) and have to see someone now. I was told no. It actually says that with a side effect like this, I have to be seen pretty quickly. I mentioned this and was told "Google isn't always right". I wasn't quoting Google...

 

Managed to see someone yesterday. I've had a blood test done and a urine sample done just in case there's something there.

 

The argument with not allowing me to see someone quickly is because I've been taking this one since May. Looking back, this actually started a few weeks ago. But was nowhere near as serious and I put it down to the weather / not drinking enough. It was only because of the amount I was drinking over the weekend that I realised something wasn't right.

[Nystagmite]

This has nothing to do with my "I think I'm being ofbbed off" thread. That is a completely different matter entirely.

 

In 2012, I ended up with 2 blocked ears and had my ears syringed, which caused my hearing to become really sensitive. I was told by both ENT and Audiology that I should just wear ear plugs. As someone who is visually impaired, I rely a lot on my ears; so that really isn't a good idea. Plus, it makes them more sensitive.

 

Anyway, things settled down mostly and I got to the stage where only some sounds really bothered me. I'm now at the stage where I can't socialise because more than one noise = goes into one loud horrible noise.

 

After having enough of this and not being able to hear clearly, I spoke to my GP. She confirmed that my ears didn't have wax in them and referred me to Audiology.

 

I saw someone at Audiology today. I had my ears tested and was asked a load of questions, including what other medical conditions I have. I am partially sighted and there's a myth that we compensate for our sight loss by having really sensitive hearing. Because of that, they won't do anything.

 

I was just told I need to, er, get out more. I recently had to leave a group because the noise (strangely, it was a music group...) caused a problem and it was getting to the stage where it got so loud that I was actually unable to hear anything. That problem isn't unusual for me and it's not unsual for me to say to friends that I need to leave now because of the noise.

[reallymadwoman]

This has nothing to do with my "I think I'm being ofbbed off" thread. That is a completely different matter entirely.

 

In 2012, I ended up with 2 blocked ears and had my ears syringed, which caused my hearing to become really sensitive. I was told by both ENT and Audiology that I should just wear ear plugs. As someone who is visually impaired, I rely a lot on my ears; so that really isn't a good idea. Plus, it makes them more sensitive.

 

Anyway, things settled down mostly and I got to the stage where only some sounds really bothered me. I'm now at the stage where I can't socialise because more than one noise = goes into one loud horrible noise.

 

After having enough of this and not being able to hear clearly, I spoke to my GP. She confirmed that my ears didn't have wax in them and referred me to Audiology.

 

I saw someone at Audiology today. I had my ears tested and was asked a load of questions, including what other medical conditions I have. I am partially sighted and there's a myth that we compensate for our sight loss by having really sensitive hearing. Because of that, they won't do anything.

 

I was just told I need to, er, get out more. I recently had to leave a group because the noise (strangely, it was a music group...) caused a problem and it was getting to the stage where it got so loud that I was actually unable to hear anything. That problem isn't unusual for me and it's not unsual for me to say to friends that I need to leave now because of the noise.

 

Getting back to the matter in hand, though my conditions are vastly different to yours, I really understand how you might feel fobbed off in this situation - I was told for years (without being examined) that there was nothing wrong with my back and it was all in my imagination, even though it turns out to be quite a serious problem hence the slowly reducing mobility. I doubt my solution will help many people as my wonderful hubby paid for me to see a specialist privately eventually, but perhaps you could at least ask for a second opinion? It sounds as if your GP might be fairly supportive, so that would be my first port of call.

[Nystagmite]

Thanks. The GP who referred me, seemed to be supportive and didn't think it was either just wax or the original diagnosis of Hyperacusis. (which is hypersensitive hearing and I'm lead to believe doesn't get worse)

 

Someone has suggested it's Auditory Processing Disorder. It does seem that because I am perfectly capable of hearing, they think there's nothing actually wrong.

[reallymadwoman]

If there's something like a regional audiology department, perhaps you could ask your GP to refer you there, or perhaps ask for a neurology referral?

[Nystagmite]

I've been back to my GP who agrees with Audiology. She's told me it's completely normal. Ok, we'll ignore the fact I don't have a social life, can't even have a bloody analogue clock (had to remove my parents clock when I slept over because the noise bothers me so much) because of how loud it is and find that certain noises give me migraine. And I think I can hear my own watch tick even if it's nowhere near my ears.

 

She also thinks I have depression. I don't. And I know I don't.

[Nystagmite]

Well, that was interesting:

Spoke to someone in ENT yesterday. I'm sure I read somewhere that the medication I take can cause some hearing problems. ENT thinks it's part of that. He also said that my hearing is fine. Although, my left is slightly better than the right. (but not enough to justify a hearing aid - not noticed a difference. Although, the left has been rather sensitive)

 

He mentioned (central) auditory processing disorder. He wants me to do a MRI scan and mentioned a hearing therapist. He said (and this would back up his diagnosis) that my problem isn't my ears; but my brain and how I process noise.

[reallymadwoman]

Progress at last! Persistence seems to be paying off. Well done.

[Nystagmite]

Hearing therapist was useless to say the least:

She is well aware (because she has neurology notes and she asked) that I'm partially sighted. Despite this, she still ended up giving me some tiny device to filter out noise. That was Friday. I had to go up today (which including travel time, took 3 bloody hours) just to give the device back for them to offer me exactly the same device - the one I can't use because the switch is too small for me to see and there are no instructions. (they're all just pictures)

 

Why does everything have to be such a battle? I'm just asking for an aid so that I can actually hear properly and have a life. Is that really too much to ask?

[Nystagmite]

I had to see my GP for an unrelated matter on Tuesday. She asked how my hearing is since as per ENT recommendations, we reduce my medication and see what happens.

 

She gave me a copy of the letter sent to her from ENT. As well as the APD, I now have a diagnosis of sensorinerual hearing loss in one ear. And not as I suspect, the hearing in the other ear, being more sensitive. Unfortuantely for me, this is a permanent problem.

[Nystagmite]

I am getting absolutely nowhere with my hearing therapist. I need an aid which means I can go out and everything doesn't go into one loud horrible noise. Apparently, nothing exists.

[Nystagmite]

I've been moaned at for doing this twice in the last several months.

 

I take various medication. I have some I take everyday and some I take when needed. With the latter, that could mean ordering every month or every 2-3 months.

 

I went to order 2 things Monday. I explained last week that I'm away when I run out. And the other, I've not had for a while and need now. I've not been given the one I need now despite it being something I could run out of pretty quickly. It can also be a pain to get hold of.

 

They've promised to give it to me tomorrow maybe. Can they just refuse just because I'm supposedly over ordering, even though it's something that I take whenever? I get given 6 at a time and can take up 4 in 24 hours.

[stu007]

Hi Nystagmite

 

Sorry you haven't had ant responses yet.

 

Question do you put your repeat prescriptions into the Doctors Surgery by telephone, online, by hand?

 

I have been in exactly the same position recently myself even though it was all fully authorized by my GP went to collect my medication at pharmacy and not prescription sent over.

 

I would suggest writing a polite letter to the Practice Manager of your Doctors Surgery but note it FAO Your Doctor and just explain exactly what you do with your medication and if they require you to come in for a review of your medication you will be more than happy to do so (if you have a condition that prevents this just explain as GP should be aware)

 

Go through the Doctors Surgery's complaint/feedback procedure they should have one.

 

What it may also be is that the Doctors Surgery Computers have certain ones of your medication marked for review at a certain date and when you are requesting this medication it is being refused due to it needing review but the Doctors Surgery should have informed you of this.

[postmn]

i also have to order sometime earlier than usual i must admit they are good , however sometimes it does need to be put in front of a doctor after a certain amout of re issues ( in my case any how) but certainly do as the poster above has suggested but make it a polite letter not a moan you will more than likely get a positive response

[think about it]

There’s potentially a few things at play here when it comes to the meds you don’t order very often. So, in order of likelihood these are the possible issues:

 

1. It’s not actually on your repeat meds, instead it’s issued as an acute script each time it’s requested.

2. It’s an ‘as required’ medication so there’s likely to be no clear dosage/time/usage guidance on the system regarding the meds.

3. It could be showing as being overused on their system and not allow them to print the script without GP approval

4. It could be on your repeats but be limited by the number of issues without GP review, or could have lapsed.

 

In any case, receptionists aren’t prescribers; so the system which generates the prescriptions is geared towards that and has numerous safeguards built in. Any query at all means that the decision goes to a GP / prescriber and they make the call, that doesn’t happen straightaway (hence the delay) as the GP’s are also dealing with their full day of face to face work and other letters / results / referrals.

 

So, can they refuse. Yes; absolutely. They’re not in a position to make that decision themselves so the ONLY safe thing to do is to hand the decision to a prescriber. I’d suggest that if you know it’s something you need regularly that you discuss this with your GP, likewise if it’s challenging to get hold of then I’d ask why and what, if any, alternatives there were.

 

This needn’t ever reach the PM’s desk to be fair if someone had perhaps explained it to you at reception. The items on repeat are there through mutual agreement with you and your doctor with responsibilities on both parties, to ensure that reviews take place, to ensure the dosages and quantities are sufficient and yet not over what is required to be therapeutic and that you only order what you need, when you need them in line with the practice guidance on how long it takes to process a request.

[Nystagmite]

Thanks. They did finally allow me to have the two I needed.