Just woke up to feelings of mental confusion, where i’m kind of chasing a thoughts but can’t quite get them.
Accompanied by the usual constant head ringing, brain pain and memory problems, im so worried that i’ve got some kind of early-onset problems.
My life is ruined, basically. i can’t see any way to recover to good brain health. how am i supposed to live with this? who can i talk to about it? what tests can i get done to check this?
i’m SO UNHAPPY dealing with all this crap at 41 years old. Losing all hope.
Written by
Dann2
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I recognize your desperation. I'm going out on a limb with this reply, not being medically trained at all.
I have been in the situation where medics have dismissed symptoms, which resulted in me going down a route of invasive tests and radical treatment which all had to be funded privately. The process of not being taken seriously then having to self-manage finding the cause and correct treatment generated more anxiety than I can or should list here, as it won't help you.
What I'm saying is, I know something about what you're experiencing and how it's making you feel. Also, I recognize how the dismissive approach of some NHS medics offering perfunctory tests and advice can drive one to despair.
Here's my offering:
First, I believe that the symptoms you're experiencing are real. They're persistent and still puzzling, which means that whatever the problem is, it's not been found or treated appropriately. You are not imagining things!
Second, I think you need a referral to someone who can really dig into the symptoms you describe and investigate them fully and properly rather than fob you off with a quick examination and surface/basic MRI scan. The investigations might find nothing, but the process must be thorough enough to reassure you that any diagnosis of 'idiopathic' is well-founded and genuine.
There will be a reason for your symptoms, the problem it seems to me from your post is that no-one has yet looked thoroughly enough to find it.
In my experience, an investigation should begin with the 'usual' tests for obvious neurological issues then move on to more thorough investigation if no definitive cause emerges. The latter is the bit that rarely happens if we're still up and moving about, regardless of how what's going on inside our head is making us feel.
For example, it could be that you're experiencing chronic, continuous migraine, for which you need to see a neurologist who specializes in the condition and its less obvious causes. My recommendation is Dr Diego Kaski at Queen Square, London (National Hospital for Neurology and Neurosurgery). Here's a reference for him:
In my opinion, Dr Kaski is an expert who is kind and approachable. It might be wise to arrange to see him privately initially, to make sure you see him personally to give you a better opportunity to explain things.
Alternatively, it might be that your symptoms are caused by something rarer/unusual, e.g. perhaps related to cerebrospinal fluid (CSF) and intracranial pressure issues. If so, the tests and diagnosis are a) well outside of the average GP's spectrum of knowledge and b) outside of the average neurologist's remit and likely experience as well (excluding Dr Kaski of course). There is good evidence to indicate that a lot of people with CSF issues are walking around today in misery and undiagnosed after decades of either having symptoms disregarded or completely misdiagnosed.
With a CSF issue, you will need a referral to see a neurosurgeon either to have it confirmed or ruled out.
Based on solid advice I received from a neurosurgeon, the investigation should begin with a full-body MRI scan including CSF flow studies, which will take about 90mins. Then they move on from there. If a CSF issue is ruled out, at least you'll be with the right team to have other causes investigated and they will know what's on the list of possible suspects. Far too many patients with CSF issues are misdiagnosed.
My recommendation regarding CSF issue investigation is to seek a referral to Mr Watkins' clinic, again in Queen Square, London (National Hospital for Neurology and Neurosurgery).
I again advise, if you can afford to do so, to arrange to see Mr Watkins privately in the first instance so that you have time to discuss your issues with the clinical lead (him personally) and can get some solid advice about next steps. This will cost around £250 if you're not insured.
Mr Watkins is one of the kindest and most approachable consultants I've met.
The last reference is more about CSF leaks than high pressure, but there's plenty of useful reading about the topic and you might find that some of it refers to symptoms you recognize.
Of course, your issues may be nothing to do with migraine or CSF, but you need to start somewhere.
I hope this is helpful and that you are able to move forward in a practical way very soon.
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