Brain haemorrhages

[mik]

Ooft - sounds like you are still in the thick of it You seem to be finding strength though, and great to hear about your family / friends supporting. Fingers crossed they find a better combo of meds. (edit - the medical professionals - not your family & friends )

[Mito Man]

Keep pushing through it and don’t listen too much to the doctors. They’re all pessimistic cunts

[dinny_g]

Minor hijack…

You good these days Mito??

[Gavster]

Damn that’s some serious shit teacherboy. I guess all the time you’re moving forwards then it’s progress of some kind, even if it’s not ‘solved’. Sending big love to you!

[Mito Man]

Minor hijack…

You good these days Mito??

All good here

[dinny_g]

Good to hear.,.

[Jobbo]

They did however confirm that in a normal universe - I should be dead already

You and that guy who survived the 787 crash should do a real-life remake of Fearless.

Glad you are still here. I'm amazed that you're still managing to live what sounds close to a normal life, between seizures at least. Very impressive.

[John]

It certainly sounds like you’re going through a very challenging time. Fingers crossed for improvements ahead.

[V8Granite]

Fight the good fight, glad to hear you are surrounded by some good people.

Dave!

[Alex88]

Blimey, you've really been through it! But you're still here and still fighting. Huge respect to you

[GG.]

Such a tough time - keeping my fingers crossed you reach a stable point. Its very frustrating when you can't pin down what's causing it or treat it consistently.

I presume you've been round numerous doctors and may have already done so but is it worth spreading your net wider/further afield to see if there are other specialists who can help?

[teacherboy]

Such a tough time - keeping my fingers crossed you reach a stable point. Its very frustrating when you can't pin down what's causing it or treat it consistently.

I presume you've been round numerous doctors and may have already done so but is it worth spreading your net wider/further afield to see if there are other specialists who can help?

I feel like that assumes private healthcare - sadly i'm restricted to the NHS, wife however gets BUPA via her work and has added the offspring to that...

Did get a letter from them (NHS) today telling me I have an appointment for my 1st ever EEG at Musgrove park hospital on Friday 25th July at 9am (will be a barrel of laughs for wife having to drive from Yeovil --> Taunton during rush hour) - at least I'll get to look like Doc Drown for a couple of hours, mad plastic cap and a billion wires sticking outta it
Then we'll have to re-mortgage the house to pay the insanely disproportionate parking charges for the 3 hours we'll be there - 1-2 hour estimate for the test, it will be longer however
Ironically this is during the first days of the summer holidays when I'm probably supposed to be sleeping in, relaxing and not twatting about in a skanky hospital ..... but hey-ho, it's only taken them 2 years to decide I probably need one

One foot in front of the other each day, others have it much worse than me - I can walk, talk and chew gum at same time - have largely kept my cognitive functions somehow (memory for names is totally buggered though).

Each seizure however is more scar tissue on my tongue, another ligament or muscle that is overextended, more brain damage and another year of restricted freedom - it's frustrating on a level that is hard to describe. Wouldn't be so bad in a big city but Yeovil is effectively a 3rd world country and public transport is shit here.

[teacherboy]

Ooft - sounds like you are still in the thick of it You seem to be finding strength though, and great to hear about your family / friends supporting. Fingers crossed they find a better combo of meds. (edit - the medical professionals - not your family & friends )

I do have some high grade (allegedly) cannabis oil, given to me by my barber, who obtained it from another client who tried it, slid off their chair and was too scared to try it again - I've been wary to try it as I definitely don't want to trigger a seizure accidentally, so I need to pick an opportune time, which will likely be the summer hols, after the EEG and when there is an adult here to supervise - likely my wife, who knows about it and despite being a lawyer is supportive of this action being taken. Just being stoned and remembering my 6th form/Uni days will likely be worth it

[GG.]

Such a tough time - keeping my fingers crossed you reach a stable point. Its very frustrating when you can't pin down what's causing it or treat it consistently.

I presume you've been round numerous doctors and may have already done so but is it worth spreading your net wider/further afield to see if there are other specialists who can help?

I feel like that assumes private healthcare - sadly i'm restricted to the NHS, wife however gets BUPA via her work and has added the offspring to that...

Did get a letter from them (NHS) today telling me I have an appointment for my 1st ever EEG at Musgrove park hospital on Friday 25th July at 9am (will be a barrel of laughs for wife having to drive from Yeovil --> Taunton during rush hour) - at least I'll get to look like Doc Drown for a couple of hours, mad plastic cap and a billion wires sticking outta it
Then we'll have to re-mortgage the house to pay the insanely disproportionate parking charges for the 3 hours we'll be there - 1-2 hour estimate for the test, it will be longer however
Ironically this is during the first days of the summer holidays when I'm probably supposed to be sleeping in, relaxing and not twatting about in a skanky hospital ..... but hey-ho, it's only taken them 2 years to decide I probably need one

One foot in front of the other each day, others have it much worse than me - I can walk, talk and chew gum at same time - have largely kept my cognitive functions somehow (memory for names is totally buggered though).

Each seizure however is more scar tissue on my tongue, another ligament or muscle that is overextended, more brain damage and another year of restricted freedom - it's frustrating on a level that is hard to describe. Wouldn't be so bad in a big city but Yeovil is effectively a 3rd world country and public transport is shit here.

I am of course not an expert but I find it hugely surprising (or not, given it is the NHS) that you would go two years without an EEG (though I'm sure you've had numerous MRIs).

You should still be able to refer yourself to other specialists for a second (or perhaps fourth/fifth/sixth by now) opinion despite not being treated privately - though I imagine you would need to push harder. If your symptoms are not under control I would be asking to be referred to wherever has a preeminent clinic for such conditions... which I would expect may not be anywhere near where you're based - possibly one of the London hospitals.

Sorry again if you've already explored this - I can't recall all the previous updates.

[Ascender]

Good to hear from you @teacherboy, but fvck me what a time of it you're having. It's amazing to hear how you're hanging in there and getting on with things, hopefully they can get things stabilised for you so you can get back on an even keel. Sounds like you've got amazing support there from friends and family.