New - Scared & Confused

[BrandiBrat]

Hey Nick! Glad to see you're going to see the neuro Wed! Did you say you also had an EEG lined up as well? I can't remember... I'm so glad to see you have an understanding employer that is willing to put you in the office while your diagnosis is pending.
And you're right...there is no sense in borrowing trouble or trying to control things which are out of your control. Do what you can.
This place has been a godsend to me and I'm glad you have found it useful as well. Please keep up the updates, I've got you in my prayers.

 

[Boycie]

Hey Nick! Glad to see you're going to see the neuro Wed! Did you say you also had an EEG lined up as well? I can't remember...

I thought the NHS neurologist had said that I'd be booked in for an EEG but when the letter turned up it said an MRI, so who knows!

She also said that she'd inform the dvla but when I spoke to them today they had heard nothing. It's also not her responsibility to inform them. The General Medical Council state in their guidance that she should have made me aware that it is my legal responsibility to inform the dvla and that I could be fined if I don't inform them of a change in my health immediately. For something as serious as this I'd really expect her to be on the ball.

 

[Boycie]

Ok, been a while since I've given an update so here it is...

I saw the private consultant and came away feeling much clearer about what was happening. He did however say that on the balance of probability that I was suffering from temporal lobe seizures. He arranged for me to have a 20 minute EEG which came back clear.

I've got an appointment to get the results of my MRI on 10th July. Work have pretty much given up on me until I'm back from paternity leave, which hasn't started yet (my son is now 10 days over due) so I've done no work for 3 weeks.

I feel like I've completely lost my independence. My wife has been amazing and despite being heavily pregnant has been driving me around and even booked for me in a couple of massages to help with the stress.

For the past week or so I've been getting a headache/feeling of pressure in one specific area of my head. It's there when I go to bed and still there when I wake up, staying all day. I'm petrified that it's something serious like a tumour and until I get the results of the MRI I just won't know. The waiting is terrible.

Friends have tried to reassure me that if the MRI had picked up something serious that I'd have been called back in straight away and not given an appointment 4 weeks away but I'm not convinced.

The waiting is horrible. Added to that, the waiting for our son to be born and I'm basically just a mess. The only things that relax me are playing football and going fishing. Unfortunately the football season doesn't start until August for my team and I won't go fishing and risk my wife going into labour and me struggling to get home.

I've tried to keep occupied doing lots of work & decorating around the house and the time spent together with my wife has been a definitive positive amongst the negatives. I've also tried to keep fit in preparation for the football season but I have this stupid voice in the back of my head telling me it's a waste of time as I might not be here for it. It's crazy I know, but when I'm on a down day I do worry that this can't be treated and I'll get the worst news.

So there, that's where I am currently. Thank you to those that have taken the time to PM me, I certainly wasn't expecting that and it's been a great help to listen to other people's experiences and how they're coping in a similar situation.

I don't feel as bad as this all the time, I do have my good days!

 

[SlimBlue]

Hi Boycie, welcome (great to finally meet someone I can call 'Boycie' )

It certainly must seem like a crock right now, but as I'm sure you've already realised- the amount of support and sage advice from here is truely amazing, especially when pitted against the NHS.

It sounds like you're doing the right thing by keeping busy during the interminable wait, and of course coming here to share it when it gets too much

 

[Nakamova]

For the past week or so I've been getting a headache/feeling of pressure in one specific area of my head. It's there when I go to bed and still there when I wake up, staying all day. I'm petrified that it's something serious like a tumour and until I get the results of the MRI I just won't know. The waiting is terrible.

I understand your fear, it's quite normal given all the stuff you've got on your plate. That said, it really is the case that they would call you right away if there were a nasty tumor visible on the MRI. Headaches are a very common symptom, with hundreds of causes ranging from emotional stress to neck problems to dehydration to eyestrain to fever.... You get the idea. I'm not dismissing it though -- make some notes about it so you can discuss it with your doctor. When did it start, how long does it last, where is it focused? Does it respond at all to pain meds? If aspirin doesn't work, try ibuprofen or acetaminophen instead (often, different headaches respond to different meds.). Make sure you are eating and drinking properly, and getting decent sleep. And hang in there! Good luck to you and your wife, hope the waiting will be over soon...