Terminal cancer support please

[stu007]

Hi Nystagmite

 

I am so sorry for your loss and the news with the sister in law my heart goes out to you.

[Nystagmite]

Not updated this for a while. Since my last post, I've had my medication upped twice and now have some really unpleasant side effects, which was the reason why I had to come off something I was prescribed last year.

 

Aside from the weather induced headaches, (I can't tolerate the heat) I'm pretty much headache free now. But every single doctor is still ignoring the problem with the feeling of too much pressure in my head.

[think about it]

Silly question, have your sinuses and perhaps even your teeth been checked?

[BazzaS]

Thanks. Have been told by some medical students that I'm overreacting. One then said "what do you want? A cure?" Well, yes, I would love a cure. I don't want to spend my life on medication, nor do I want to spend it in pain.

 

1) They are only students. Granted they are the GP's and consultants of tomorrow, but they have a ways to go before then.

Even IF they were correct (and we don't know that!), it isn't their place to tell you that : it is for the qualified docs to do so (and anyone below [lets say] ST3 or staff grade would be unwise to do so - they don't have the experience to know if they are just generating a complaint that will be upheld).

 

2) I appreciate your comment was from February : did you give feed back to their Consultant?.

If they are willing to do that as students, they'll carry that attitude forward in to their career unless a senior doc knows about it and educates them as to the lack of wisdom of behaving like that .......

I'd have let the consultant know at the time, along the lines of "I found it unhelpful, and I'm not sure they yet know enough and have enough experience to be making comments like that. I'd prefer not to complain officially, after all they are only students, but could you follow it up with them?. Would you consider letting them know that if they had been FY doctors acting like that I'd be making a formal complaint ...."

[Nystagmite]

Silly question, have your sinuses and perhaps even your teeth been checked?

 

Sinuses, no. I get regular dental check ups and aside from dental pain caused by wisdom teeth coming through, I've had no problems.

 

@ Bazza - it was students on a student forum who have never met or indeed assessed me.

 

I have another appointment on Friday due to my medication being upped 4 weeks ago. No matter how many times the feeling of pressure has been mentioned, it's been ignored.

[Nystagmite]

Surprise, surprise. I mentioned the pressure and was told it's normal.

 

I've now seen every GP in this surgery apart from 2 or 3 I think over this.

[Nystagmite]

Saw another GP today and it really was a waste of time. She claims they're running out of options. But won't give me a neurology referral and claims it's just migraine. I don't have migraine. I have told them time and time again it's not migraine.

 

She then upped my medication again, despite me saying I can't take it due to the side effects. She also said to take aspirin. I have asthma, which apparently causes problems.

 

Really ****ed off now. This has been going for a year now and I am getting nowhere. Apparently, my MRI scan being unchanged from 2 years ago, which they say means there's nothing wrong.

[honeybee13]

Hello Nystagmite.

 

Sorry if I'm statiing the obvious or you've already done it, but have you researched your problem online yourself?

 

I ask because a friend's husband was in hospital with a brain condition that the doctors thought was one condition, but when she did her own extensive research online, she found an alternative and much rarer condition.

 

When she and her OH got to speak to the consultant, he agreed to look into the condition she had found out about, and it turned out that was what her husband had. They had been treating a different condition.

 

Apologies if you have already done this, but it seems that doing your own research can bear fruits.

 

HB

[Nystagmite]

Yes, I have researched it online a few times. But there's very little information out there.

 

One of the side effects of the condition (and the medication I'm on) is headaches. Despite this, every doctor is saying this isn't the case.

 

I have spoke to Brain and Spine Foundation who have suggested cranial osteopathy and testing the pressure behind my eyes. One of my symptoms is the constant feeling of pressure.

 

Going to make a complaint about this. No-one is taking me seriously over this, despite me saying that my headaches are almost every day.

[think about it]

I think it may well be time to pop a complaint in, part of the process for us as PM's here at least is to offer a face to face meeting. This could be a great opportunity to discuss each of your concerns, ask what the plan is going forward and to ask what they've done to exclude the diagnoses that you feel they are ignoring.

[Nystagmite]

Thanks. I've written a letter and will drop that in tomorrow.

 

I've now stopped my medication. I know I will get told off for it; but if I take it, I can't breathe properly. I told the GP this and she said it's just hayfever and to take something for it.

 

I have spoken to B&SF again. They told me I am meant to be under the neurologist too.

[think about it]

Maybe it's also worth asking for a copy of your records (ask for a 'brief summary', it's not that brief and generally contains the narrative from the most recent consultations) and sight of the letters from the specialists. Sometimes seeing for yourself what's written can help a little bit.

 

I'm not medically qualified in any way however I am utterly surrounded by those that are and can pick up some of the more common themes.

 

If you have a specific diagnosis that you want to exclude then please do be specific in your complaint / meeting about it. Be prepared for the fact that there may be no definitive / ultimate diagnosis. In some cases the more rare diagnoses are those of exclusion and that for the most part, a GP will not automatically consider the one in a million chance. Especially so if they've not seen it before and it's out of their frame of reference.

 

I live with a condition which is one diagnosed by exclusion, it's frustrating that in all of the tests / cameras / biopsies and general poking around that there's nothing that they can go in and fix / remove / cut out. It leaves me with that same question mark which I think I understand might be the biggest concern. So, for me at least, my treatment is symptom control and avoidance of the things that make it worse. I've toyed with elective surgery but can't reconcile the risks involved in something that probably won't solve the problem. I also know that a big part of my condition is psychosomatic and part of my symptom control doesn't come on a prescription, it's locked up somewhere in my thoughts and feelings. Learning to control that in some way has been very challenging and needs constant work. Thankfully I have a gp who is brave enough to tell me what I really already knew and was willing to get involved in that side of my treatment too.

 

I'd really recommend going into this with an open mind, I'm sure you'll have a lot of questions so write them down, perhaps even include them in your letter, have someone listen to all of your concerns and then give them the opportunity to address each of them. This will almost certainly take more than one day to even get going so lay out your ideas, concerns and expectations and ask them to start again including a full medication review. Good luck.

[Nystagmite]

Thank you. My complaint has been received and they said they'll investigate. For a completely unrelated issue (some silly doctor gave me far too much medication and someone only noticed after I'd started taking the lower dose) I may need to make another complaint.

 

Sighs.

 

I've not taken any of my tablets since I saw the doctor last week. I've felt so much better. Reading upon on it, (I sort of remember a conversation with a doctor about this last year) I think part of the problem appears to be something called medication induced headaches. In my case, when I said they weren't working, I was just given more and more medication. And headaches are the side effects of one of my current medications (fostair) and the Gabapentin, which I've just had to stop.

[BRIGADIER2JCS]

Thank you. My complaint has been received and they said they'll investigate. For a completely unrelated issue (some silly doctor gave me far too much medication and someone only noticed after I'd started taking the lower dose) I may need to make another complaint.

 

Sighs.

 

I've not taken any of my tablets since I saw the doctor last week. I've felt so much better. Reading upon on it, (I sort of remember a conversation with a doctor about this last year) I think part of the problem appears to be something called medication induced headaches. In my case, when I said they weren't working, I was just given more and more medication. And headaches are the side effects of one of my current medications (fostair) and the Gabapentin, which I've just had to stop.

 

 

 

This kind of problem occurs frequently as todays GPs and indeed hospital based doctors have little knowledge of pharmacology and drug interactions, relying on publications such as MIMS and internet site.

 

 

"Medication induced headaches" = Iatrogenic side effect (s).

[sillygirl1]

Just wondering if you are on Tramadol, this can cause a lot of pressure in your head, (it did it to me on the front right side....) so I had to stop taking it. Never suffered from headaches before and started getting them regularly then.

 

I have neck problems which sometimes cause me head problems, but I am having a regular massage every three weeks focussing on that particular area and using a mini 'tens' machine every other week to releive any tension. I got my tens machine very reasonably from an online offer - have you thought of trying one of these?

[honeybee13]

I agree about the TENS machine, SG, they work well for us.

 

HB

[Nystagmite]

Thanks. No, not on tramadol. Was only on Gabapentin and was told to take aspirin and paracetamol if the pain got worse.

[Nystagmite]

Hurrah!

 

Medication has finally been changed and I finally have a neurology referral. Saw another GP today who thinks my blocked nose isn't hayfever. (I've had it since January) She said there is a possibility of medication induced headaches and doesn't believe it's migraine.

[honeybee13]

That sounds really hopeful, Nystagmite, I hope it helps you.

 

I'm sure you'll keep us posted, good luck with this.

 

HB

[Nystagmite]

Thanks

 

Bit of an update:

Because I finally have a referral, I've been told they won't investigate my complaint further. Can they really do this? It's been going on for the last year and no-one has ever been that concerned over the issues I'm having, apart from me. In fact, a few doctors attitudes have just been "there's nothing really wrong", despite being in constant pain.

[Nystagmite]

I finally saw neurology yesterday, which really was a waste of time. He's referred me to the headache clinic, ingored the fact that there's a constant feeling of too much pressure in my head (which I've had really bad non stop since Thursday) and he's upped my medication. He said that if it doesn't work, (I'm almost on maximum dose) he's going to put me on Topamax, which I've heard some horror stories about.

[Nystagmite]

well, Pregabalin has stopped working and I went back again to see the GP. She won't give me Topamax because her supervisor (another GP; she's a trainee) says it's not used for the type of pain I have.

 

Fed up now. Why won't anyone take me seriously?

[sillygirl1]

If it is nerve pain then Pregabalin is the best one to take, maybe they have got you on too much....I don't often need to take it these days, but when I do I find one at lunchtime stops the spasm in my neck far more effectively than painkillers (I was on Tramadol for a while but I came off them very quickly).

 

I have FINALLY got my appointment for the Sleep Clinic guy (and they have given me the top person in the country - YAY) so I might get to the bottom of what causes my continual insomnia. Got it bad at the moment because of the full moon (yes I probably am a proper Lunatic on top of the sleep problems).

[Nystagmite]

It's not nerve pain. I have arachnoid cysts, which is something to do with the way my brain has developed (ie, not the way it should have done)

[Nystagmite]

I've just had a horrid few days, needed an emergency GP appointment (it really couldn't have waited the 2 weeks) and am on Topamax. And I have vertigo too.