Relapsed

[northpaul]

1 hour ago, Lynz said:

They could do a brain scan but that won't actually show anything unusual. You seem to think that they will do a brain scan and see that you have sustained some brain damage (which is not likely as you will have other real physical and psychological symptoms), and from that be able to say "yep, she will get dementia in x years time". This is not going to happen. Even if they do a scan and see some kind of "damage", they still won't be able to tell you if you will get dementia or not. They can only work with what is in front of them in the here and now and not make predictions based on the future.

Generally speaking I agree with the points you raise in the whole of your your post.  However I would like to add in some clarity about the brain scans.

As some people will be aware I have had a brain scan.  You stated above '' They could do a brain scan but that won't actually show anything unusual.''

I was surprised when I got the results of my brain scan that the scan did show in quite specific detail the extent and also the age of the infarcts (dead tissue) in my brain.  The Radiologist and Specialist Doctor could even tell if they were old or more recent infarcts.  That I would say is something significant or unusual.

However, I do agree that that the scan only gives evidence of brain disease/injury.  There are many different symptoms that can arise from such disease/injury.

In view of Robin's statements about multiple head impacts I still think a brain scan would be a sensble thing to have.  That will give clarity to that specific issue of brain damage.  As another poster has suggested this course of action can be taken alongside any help required for mental health issues.

Another related point about brain injuries in general is this:

The Football Association is in the process of investigating how multiple impacts to the head affect footballers later in life.  They have also recently intoduced head injury protocals that means players must not play for a set period of time and are put under Medical supervision.

Head impacts are now been taken far more seriously.

PS.  I spent some of my time at work helping the Memory Service Doctors and Nurses and did meet some of the patients.  Like yourself, I do have some insider knowledge.

[Lynz]

1 hour ago, northpaul said:

Generally speaking I agree with the points you raise in the whole of your your post.  However I would like to add in some clarity about the brain scans.

As some people will be aware I have had a brain scan.  You stated above '' They could do a brain scan but that won't actually show anything unusual.''

I was surprised when I got the results of my brain scan that the scan did show in quite specific detail the extent and also the age of the infarcts (dead tissue) in my brain.  The Radiologist and Specialist Doctor could even tell if they were old or more recent infarcts.  That I would say is something significant or unusual.

However, I do agree that that the scan only gives evidence of brain disease/injury.  There are many different symptoms that can arise from such disease/injury.

In view of Robin's statements about multiple head impacts I still think a brain scan would be a sensble thing to have.  That will give clarity to that specific issue of brain damage.  As another poster has suggested this course of action can be taken alongside any help required for mental health issues.

Another related point about brain injuries in general is this:

The Football Association is in the process of investigating how multiple impacts to the head affect footballers later in life.  They have also recently intoduced head injury protocals that means players must not play for a set period of time and are put under Medical supervision.

Head impacts are now been taken far more seriously.

PS.  I spent some of my time at work helping the Memory Service Doctors and Nurses and did meet some of the patients.  Like yourself, I do have some insider knowledge.

Hi Paul.

On the whole I agree with you however I do think your situation and Robin's are very different. From my understanding you suffered with a TBI or something similar (correct me if I'm wrong), and in your case what was going on was pretty obvious. A brain scan was necessary and required in your situation to help with diagnosis and assessing the amount of damage etc. My point wasn't that brain scans are a waste of time and don't show anything useful, far from it, but rather that if the person has not actually suffered any specific brain injury or has any other symptoms to indicate anything wrong then a scan would be very likely to not show anything at all.

In Robin's case there is no evidence at all that she had suffered an actual physical brain injury nor has she been complaining of a decline in cognitive abilities or function that would indicate that she has suffered some form of brain damage. Therefore in her case it would likely be pointless. Also she has not told us yet what these multiple head impacts consisted of for example, did she mildly knock her head in the rough and tumble of contact sports, or did she used to be a professional boxer and get whacked in the head many times a day?

I do agree that head impacts amongst those who play contact sports e.g. football, rugby etc are being taken very seriously as they should be, but nobody is suggesting that every single person who has ever played contact sports and has had head impacts should go and get brain scans and get assessed for future likelihood of getting dementia. At present it is still only a tiny minority of players who will go on to develop dementia. Hundreds of thousands of people if not more have played contact sports and had multiple head impacts, so in theory they are all in the same boat as Robin, and therefore should every single one of them now go and get their brains scanned and be seen by a neurologist? Obviously not, therefore my point is that Robin is massively overinflating her risk of danger which is a classic feature of OCD.

My point which seems to be ignored is that NO single brain scan in the world will be able to tell someone if they will get dementia in the future. The technology for that doesn't yet exist. What you have described about footballers is that they are investigating into the causal link between head impacts and dementia, and there are studies which are investigating this over many years. For example they will take brain scans at intermittent periods over many years to monitor changes in the brain that will lead to dementia.

What Robin is asking for, that she wants to have a brain scan and be told for certain by a neurologist if she will get dementia or not, simply cannot happen. Also, she wants this not for reasons of clinical necessity, i.e. she has not suffered a physical injury nor has she developed any symptoms, but for reasons based on anxiety and OCD. I can guarantee that no GP will refer her for a scan based on the fact that she is worried she will develop dementia in decades to come and when she doesn't actually have any symptoms, because a scan in those circumstances would not be beneficial to the patient but rather more detrimental to her mental health.

But it is up to her what route she takes, and the fact that she hasn't actually done anything about it for months on end but every time she gets worried about it she comes on here for reassurance rather than going to an actual doctor suggests even more to me that she has an OCD problem rather than a real health concern.

One way for her to move forward possibly would be to go and see her GP and discuss her concerns with them. They are impartial and rational and would be able to judge better than us if this is something that needs to be investigated further or whether it is more of an anxiety/OCD problem. My suggestion then would be for her to go to her GP, outline all of her concerns about dementia, and also discuss her anxiety and OCD and how she is so consumed by the worry. A GP then will likely be able to advise whether she needs a scan or not or whether she should focus on treating her OCD.

Edited January 12 by Lynz

[northpaul]

38 minutes ago, Lynz said:

One way for her to move forward possibly would be to go and see her GP and discuss her concerns with them. They are impartial and rational and would be able to judge better than us if this is something that needs to be investigated further or whether it is more of an anxiety/OCD problem. My suggestion then would be for her to go to her GP, outline all of her concerns and dementia, and also discuss her anxiety and OCD and how she is so consumed by the worry. A GP then will likely be able to advise whether she needs a scan or not or whether she should focus on treating her OCD.

Agreed  

[howard]

@Robin43 I think it'd been hinted at on here, but in all those therapy sessions has anybody suggested you might have a fatalist personality trait? This is just speculation on my part but it would explain why you seem to look for evidence to back up that viewpoint or justify your concerns.

But going back to what this thread is actually about, ie: should someone with ocd attribute all fears and concerns to ocd?

The problem generally is that people with ocd will always see everything through their own ocd prism. That's a given for any mental condition or mental structure. Sociopaths tend to focus in on the sociopathic traits in other sociopaths for example. Should people with ocd then try to convince others that what's happening in their minds is always locked into that paradigm, is debatable.

Specialists do know the dangers of repeated head imacts especially if they are to one area of the head/brain and they recommend many ways of staving off mental decline, from protecting our heads/brains from impacts to all the sorts of things that seem to help stave off most potential health issues; good diet, exercise, cut down on smoking and alcohol, etc.

But we aren't therapists, mental health professionals and certainly not neurologists, so really it's up to you to decide.

[Robin43]

@northpaul, @PolarBear, @snowbear, @howard, @Angst, @OCD slave, @Lynz and @Garfield thank you very much for taking the time to contribute to this post. You have all made some very important points which I have seriously taken onboard and I have very much appreciated your time.

@Lynzthank you for that but labelling as Theory A or Theory B is difficult as you can't label a factual increased risk of Dementia which is proven for repeated head impacts as Theory B, when in real life it is Theory A.

@OCD slavethat is a very striking point you made about making peace with the past as I do suffer with incredible guilt and responsibility.

@northpaulyou have it exact when you said "it is not a compulsion if going to see a Neurologist is in response to a genuine concern over head injuries", you say it would only be a compulsion if I went and then disregarded their advice and I think that is correct, as I had hundreds of head impacts over a period of several years and there is factual evidence that repeated head impacts increase the risk of taking Dementia.

So I cannot understand how @snowbear can say "nonsense" when I say this is not OCD this time, this is a genuine real health worry. How can @snowbearalso say "her perception of previous 'head injuries' she's 'sustained' is very distorted. Rational thinking would treat the exact same experiences as insignificant and not even label them as 'injuries'. " How can they be insignificant and not injuries even though I had hundreds of head impacts over a period of several years? Just because I have OCD it doesn't mean every other health issue doesn't exist and shouldn't be addressed?

@snowbearI have made enquiries about 3/4 private therapists but they are all fully booked and don't operate a waiting list. I have had 35 sessions of specialized OCD NHS funded treatment with top therapists in the country so I don't know how further therapy is going to help me?

@snowbearwhen you talk about me fighting back against OCD in the meantime I honestly don't know where to start.

[northpaul]

58 minutes ago, Robin43 said:

there is factual evidence that repeated head impacts increase the risk of taking Dementia.

I would re-write this sentence as below:

there is some (1) evidence that repeated head impacts increase the risk of taking brain disorder (2)

Note 1 - there are ongoing studies into this as Lynz  described in her post

Note 2 - there are other brain disorders besides dementia that can cause dibility.

 

[snowbear]

1 hour ago, Robin43 said:

How can they be insignificant and not injuries even though I had hundreds of head impacts over a period of several years? Just because I have OCD it doesn't mean every other health issue doesn't exist and shouldn't be addressed?

I agree, genuine health concerns should be addressed like any other health issue, and not everything should be put down to OCD.

So why did I answer as I did?

At no point have I said you shouldn't see a neurologist. If you have symtoms of neurological damage, then go see one.

But let's consider the reason you want to see a neurologist - and ask why this has only occurred to you now and not after any of the head impacts.

First you want to know if there is significant damage from the multiple head impacts.  Fair enough.

A neurologist can do a scan and give you a yes or no answer - there is evidence of significant damage or their isn't.

However, your next question, 'Will this definitely lead to dementia - yes or no? ' is unanswerable.

What can a neurologist tell you?

There is a risk of dementia even if there is no evidence of damage on a scan. There is also a good chance you won't get dementia even if there is damage on a scan.

In other words, the scan only tells you if there is 'visible' damage present or not. It won't answer your question about whether or not you will get dementia.

Next you might ask the neutrologist to put a number on the risk of developing dementia. Maybe he has the experience and expertise to give you a percentage, or more likely he'd sidestep the question and say we can't know for certain.

But let's say he gives you a value of 5% risk. How will you react? My guess is you'll treat a 5% risk as 'scan-proven evidence' that you will get dementia, ignoring the 95% chance that you won't. The result will be that you're no further along than you are now, still worrying because there is 'some' risk.

What if he says, 'Terribly sorry, Robin, but after looking at your scan I'd say you have a 95% chance of getting dementia.' How will you react? My guess is, 'OMG, that's it. I'm guaranteed to get it. My life is over.'  You'll completely disregard the 5% chance that you won't get dementia in spite of everything, not even consider that something else might intervene to kill you before you reach dementia age, and you'll change your behaviour in a detrimental way and stop living with any quality of life in the present based on something that might happen to you decades in the future.

You're what, in your 30s? Even if you got pre-senile dementia that's another 20 years before you'd start showing symptoms. Approximately another 30-40 years based on average figures.

So let's ask the neurologist; what treatment is there to prevent me getting dementia?

Answer: a good diet which includes omega-3 and omega-6, regular physical exercise, daily mental activity learning a new skill, and healthy sleep patterns. The anti-dementia drugs we have at present are only of use once someone starts showing signs.  (And I'm sure you can add to this list from the million times you've googled dementia!)

So the neurologist will ask, 'Have you noticed any signs of nerve damage following the head injuries? Such as muscle weakness, tremor, incoordination, or muscle wasting? Any brain symptoms such as memory loss, difficulty understanding things you once understood, difficulty speaking, or hearing, or changes in vision? (You'll already have mentioned the detached retina, so he'll know about that.)

If you have any such symptoms and you've not mentrioned them to us before, then that puts going to a neurologist in a different light. However, my understanding is you have no such symptoms at present?

So the neurologist will suggest you go home and live life normally, apply the preventative measures for dementia (which everybody ought to be doing anyway!) and come back and see him in the future if you do develop any physical or mental symptoms (other than OCD which isn't the result of brain damage.)

 

But this isn't really about asking a specialist, 'Have I got brain damage?' It's about wanting to know, 'Will I get dementia?' - seeking certainty, wanting your obsessive fears reassured.

Most people are a bit scared of getting dementia, but they don't obsess over it. Even those of us who have several 'risk factors'. People thinking normally don't give up on life because there's 'a risk' of dementia in the future.

So you tell me, would going to see a neurologist be an exercise in getting certainty about your future (a reassurance compulsion) , or to access treatment for some neurological symptoms you've currently got ? (appropriate to see a specialist now.)

I assumed - and forgive me if I got this wrong - that your head impacts in the past aren't clinically significant, because you have reported no physical or mental symptoms resulting from them in the present. It's all about concerns over possible future developments from the detached retina and from the head injuries.

 

I'm not an expert in neurology, but I know a thing or two about OCD. The way you talk about this has OCD written all over it. Your willingness to ask about what you can do to fight back (for which I applaud you ) suggests you too know, at some level, that this is OCD driven more than a 'genuine health concern'.

 

1 hour ago, Robin43 said:

I have had 35 sessions of specialized OCD NHS funded treatment with top therapists in the country so I don't know how further therapy is going to help me?

When therapy doesn't work we need to ask why. Even the top specialists can't help us if we aren't ready to change our thinking and behaviour. (I myself saw Dr David Veale at the Priory some years ago. He gave me excellent advice on how to overcome my OCD and I left knowing it wouldn't work because I simply wasn't ready - or willing - to put the advice into practice at that time.)

Maybe the question you need to ask yourself is, What will make me ready to change my thinking? What has to happen before I'll be willing to change my behaviour?

You know I only want to help; Given that we have got around 20 years left before you need to worry about dementia symptoms, how about we use some of that time to work on recovery from OCD? Nothing to lose. And it's amazing how once you stop obsessing over something it stops seeming like such a big deal.

 

[northpaul]

1 hour ago, snowbear said:

I assumed - and forgive me if I got this wrong - that your head impacts in the past aren't clinically significant, because you have reported no physical or mental symptoms resulting from them in the present. It's all about concerns over possible future developments from the detached retina and from the head injuries.

 

Back in 2013 I had 2 blackout episodes (3 months apart) and then had several more before I actually mentioned them to my medical team (around 2017).  Certainly back in 2013 I shrugged them off as insignificant  because the following day I felt perfectly OK.

I now know that those events in 2013 were clinically very significant.  Some of the symptoms did not start till much later and new symptoms are developing even now.

The point I am making here is that symptoms of brain injury/disease can take years to become apparent.

1 hour ago, snowbear said:

So you tell me, would going to see a neurologist be an exercise in getting certainty about your future (a reassurance compulsion) , or to access treatment for some neurological symptoms you've currently got ? (appropriate to see a specialist now.)

In light of such delays between impact event or other possible injury event, I still disagree that going to speak to Medical professionals about head impacts is a compulsion.  I would say it would be a sensble thing to do.

Edited January 13 by northpaul
Missed a word

[howard]

Yes from what I read the most damage is done to our brains if we get knocked unconscious, so as that's happened to me at least three times I'm probably in the high risk category also. But it also states the obvious that repeated impacts to our heads and delicate brains will potentially cause damage, we don't have a woodpecker's physiology.

The NHS does promote early diagnosis and treatment for any conditions and there are often medications and treatments that can stave off conditions.

I'd certainly prefer to know in advance and mitigate against any possible damage that could be done by not taking the appropriate action, including talking to a specialist(who actually knows what they are talking about) and can carry out tests to give patients peace of mind or advise them on treatment and lifestyle changes.

[Robin43]

Hello everyone

I hope you are all doing ok, and I really mean that.

I just thought I would share an update on where I am at. Three weeks ago I went to my GP as some of you had very sensibly suggested. She mentioned to me things like I could have had mild bruising to the lining layer of my skull. She said 95% of her would say not to go to a Neurologist but very often people will just look at things from an OCD perspective and she is looking at them from a medical point of view. She said she thinks if I did go to see a Neurologist it would give me some reassurance.

I have continued to be tortured mentally over the last number of weeks about this, 24/7 thinking about it though I have engaged in some things such as Sessional working hours as a Mental Health Peer Trainer in my local Recovery College, I have also been out for dinner a couple of times and I am attending a weekly Spin class but the torture inside my mind is unbearable.

I have had 2 sessions with my new OCD Therapist. We are still in the assessment phase but my therapist agrees that it is a difficult one to know what to do for the best but I could treat it as OCD for a while and see how I feel about it in a few months time. I am not sure though, I still feel I should just book and see a Neurologist-I am delaying the inevitable and even my GP doesn't think that it would be a bad idea either.

I just thought I would share an update with you all as the posts you provided me back in November rescued me out of a very dark place and I was really thankful for all the input from everyone.

Edited February 11 by Robin43

[Garfield]

Sorry to hear the torture inside your mind is unbearable still.  I can relate to that.

Only you can decide whether to see a neurologist or not.

Great that you are seeing an OCD therapist.  Hopefully you will begin to chip away at the OCD very soon.

Managing to do other things are still wins even if they are not as good as we'd like (due to the OCD).

Best wishes.

[snowbear]

Hi Robin,

I'm delighted to hear you're taking positive steps to help yourself - seeing the GP, time giving a peer support, and engaging in therapy. Well done you!  

Setting aside the necessity or not of seeing a neurologist, it's great news that your GP is being supportive and would refer you if that's what you eventually decide you need. It's always good to have people willing to support you.

Good luck with the CBT. I hope it helps to get you to an even better place soon.

[Caramoole]

Robin, forgive me for asking, but could I ask what was the nature/cause of the repeated incidents that you feel caused the brain injury you're concerned about?

[howard]

I'm sure you've probably seen this but it does indicate some changes in cognitive abilities, symptoms that we can all be aware of and also the NHS does offer pre-emptive tests for most major conditions from about the age of fifty(depending on specific personal factors and which condition).

https://www.nhs.uk/conditions/dementia/symptoms-and-diagnosis/tests/

Also there are companies offering a simple blood test(for tau 217) which has about a 90% prediction success.(ALZpath is one).