Unable to keep Brain Tumour anxiety in check

[Call me Edwin]

Hello everyone.

This is my first post but I have lurked around reading various threads from time to time over the years, and found it all helpful.

I am 60 years old and have suffered on and off with Health Anxiety most of my life, although it wasn't identified as such until a few years ago. Previously I have worried about stomach cancer and bowel cancer, but not now.

In 2016 my partner was diagnosed with a brain tumour, which was a horrible experience (as it would be for anyone). Fortunately it was benign and operable and she was soon home and back to normal. This obviously hypersensitised me to brain tumour thoughts.

In 2017 I started to get a high-pitched, white-noise kind of non-directional tinnitus which gets worse if I press on my skull, twist my neck or yawn.
Then I started to get what I call is the "kick in the head", a sort of jolt whenever I move head or eyes. This was followed by occasional very brief bouts of vertigo and, rarely, double vision which I could stop by closing my eyes to sort of reboot them.

I have no externally visible symptoms - I can talk and write legibly, walk around without falling over, do the dishes without breaking them and drive a car.

I was referred to an ENT specialist (principally because of the tinnitus) and had a scan of the back of my head which showed nothing suspicious. I think this was about 18 months ago although I can't now find the paperwork.

I was still troubled by HA, so last winter my GP referred me to a talking therapy service called iTalk. I had 12 sessions of CBT which I found very helpful, getting me to challenge my assumptions and generally putting in on the road to what I thought might be a full recovery. I was happier in 2019 than I had been for years after learning how to downplay the attention I paid to the symptoms.

But last month it came back, and it was a smasher. I now notice my symptoms feel worse than ever and I am in terrible fear - fear of the fear. I have booked a GP appointment for next week and I thought by re-reading and practising some of the CBT material I would be able to park my problems until then. After all, whatever I've got isn't going to kill me in the next 6 days as its progress is slow.

That has worked up to a point during the daytime. But my nights have become awful. I typically go to bed only when I am very tired, then read a book until I can't keep my eyelids open any longer. I then settle down. But I can't get off to sleep. The fear of the fear grows and grows. I drift off for a few minutes here and there, but keep jolting back to wakefulness after terrifying nightmares. I also dry-vomit in the night (something that has stayed with me when I'm upset ever since the long-gone stomach cancer fear years) - I think that's just a natural fight-or-flight reaction. Last night my best effort was a sleep of about 1hr from 4 until 5 with another distressing nightmare. I am exhausted but can't relax.

I am on 150mg of Dothiepin nightly, it's a tricyclic antidepressant that is not now prescribed to new patients because accidental overdoses are more dangerous than other drugs of its class. I can also tell you that I've tried to come off it a few times in the last 30 years by gradually reducing the dose, but have failed.

So, can anyone give me any tips on how to get to sleep at nights? And thanks to all readers for bearing with me this long, I imagine some of you will have found this very tedious but I wanted to get the facts off my chest.

[Gary A]

Hello everyone.

This is my first post but I have lurked around reading various threads from time to time over the years, and found it all helpful.

I am 60 years old and have suffered on and off with Health Anxiety most of my life, although it wasn't identified as such until a few years ago. Previously I have worried about stomach cancer and bowel cancer, but not now.

In 2016 my partner was diagnosed with a brain tumour, which was a horrible experience (as it would be for anyone). Fortunately it was benign and operable and she was soon home and back to normal. This obviously hypersensitised me to brain tumour thoughts.

In 2017 I started to get a high-pitched, white-noise kind of non-directional tinnitus which gets worse if I press on my skull, twist my neck or yawn.
Then I started to get what I call is the "kick in the head", a sort of jolt whenever I move head or eyes. This was followed by occasional very brief bouts of vertigo and, rarely, double vision which I could stop by closing my eyes to sort of reboot them.

I have no externally visible symptoms - I can talk and write legibly, walk around without falling over, do the dishes without breaking them and drive a car.

I was referred to an ENT specialist (principally because of the tinnitus) and had a scan of the back of my head which showed nothing suspicious. I think this was about 18 months ago although I can't now find the paperwork.

I was still troubled by HA, so last winter my GP referred me to a talking therapy service called iTalk. I had 12 sessions of CBT which I found very helpful, getting me to challenge my assumptions and generally putting in on the road to what I thought might be a full recovery. I was happier in 2019 than I had been for years after learning how to downplay the attention I paid to the symptoms.

But last month it came back, and it was a smasher. I now notice my symptoms feel worse than ever and I am in terrible fear - fear of the fear. I have booked a GP appointment for next week and I thought by re-reading and practising some of the CBT material I would be able to park my problems until then. After all, whatever I've got isn't going to kill me in the next 6 days as its progress is slow.

That has worked up to a point during the daytime. But my nights have become awful. I typically go to bed only when I am very tired, then read a book until I can't keep my eyelids open any longer. I then settle down. But I can't get off to sleep. The fear of the fear grows and grows. I drift off for a few minutes here and there, but keep jolting back to wakefulness after terrifying nightmares. I also dry-vomit in the night (something that has stayed with me when I'm upset ever since the long-gone stomach cancer fear years) - I think that's just a natural fight-or-flight reaction. Last night my best effort was a sleep of about 1hr from 4 until 5 with another distressing nightmare. I am exhausted but can't relax.

I am on 150mg of Dothiepin nightly, it's a tricyclic antidepressant that is not now prescribed to new patients because accidental overdoses are more dangerous than other drugs of its class. I can also tell you that I've tried to come off it a few times in the last 30 years by gradually reducing the dose, but have failed.

So, can anyone give me any tips on how to get to sleep at nights? And thanks to all readers for bearing with me this long, I imagine some of you will have found this very tedious but I wanted to get the facts off my chest.

I suffer quite badly from a lack of sleep myself, no idea why, I’ve just always been someone who thinks 3 hours a night is akin to hibernation.

There’s some handy tips online, if I remember right my doctor referred to it as “sleep hygiene” , and advised me to read up on it. That was a few years back and to be honest I never really gave it much of a go.

The obvious ones are limiting caffeine and not eating too late at night. There’s actually some really good videos on YouTube about how to sleep easier etc.

I can certainly attest to a lack of sleep playing havoc with your mind and body, on the rare occasions I do get a good few hours I feel invincible rather than run down and generally rubbish.

[Call me Edwin]

Thank you Gary, you're very kind. I already do most of this stuff but the one I find impossible to crack is getting up when I can't sleep - the house is too cold and the bed is too comfortable! Will have to see if I can do better tonight.

[ankietyjoe]

You seem to have an abundant amount of information about the symptoms you are experiencing and also what to look out for in terms of brain tumours.

Where does this information come from?

[Call me Edwin]

A lot of it is from browsing this site Joe - it seems to be quite common (this variety of HA that is). I also have one of the Claire Weekes books about anxiety which I bought a few years ago, and my notes from my CBT sessions. That includes some workbooks from the Centre for Clinical interventions in Australia, which is what some of my therapist's techniques were based on. Apparently the CCI have a good reputation and their stuff is very readable.

As for brain tumour, some if it comes from witnessing my partner's experience and some from the dreaded Dr Google. Unfortunately. And the NHS site which is less scary, but still scary enough.

[ankietyjoe]

some from the dreaded Dr Google. Unfortunately. And the NHS site which is less scary, but still scary enough.

It's not possible to keep health anxiety in check if you use these sites. There is no exception to this rule unfortunately.

My suggestion would be to stop using these sites altogether, 100%. Only then can you start to think 'normally' again.

Leave the symptom checking to the professionals, and you take care of the anxiety.

[Call me Edwin]

Thank you Joe for that reminder, I will try hard to do as you say. I slept much better last night, so everything looks a bit less desperate this morning.

[ankietyjoe]

That's good to hear.

On top of not googling symptoms, it's important to stop double checking and hyper focusing on each and every symptom you experience too. Anxiety alone can produce almost every symptom of any kind of disease out there, and jumping to worst case scenario conclusions each time you stumble or forget a word is a recipe for constant suffering.

It's not easy, but it is ultimately a choice you are capable of making. It will take practice and persistence, but I promise you this is the one way to deal with this successfully.

[Call me Edwin]

it's important to stop double checking and hyper focusing on each and every symptom you experience too.

I know you are right but it's so hard to do; I had another new symptom this morning that I am agonizing about.On the plus side, I did sleep well again last night

[ankietyjoe]

I know you are right but it's so hard to do; I had another new symptom this morning that I am agonizing about.On the plus side, I did sleep well again last night

It is hard for sure. That's why it's so important to keep practising, every time.

[Call me Edwin]

Well, I went to my GP yesterday, she took a good look at me and told me that since my symptoms haven't really changed much over the last 18 months she's as certain as she can be that I don't have a brain tumour.

I've kept working with my CBT materials and strategies, which she encouraged. I have continued to sleep well and that makes a big difference to my ability to think logically and not catastrophise too much.

I think the next step is to spend less time on this forum since that is a bit obsessional in its own way, and to get on with life. Thanks to all who have posted their stories and listened with patience. Onwards and upwards.

[ankietyjoe]

Not being on the internet is a positive step.

However, remember this forum is called 'No More Panic', and is a useful resource to manage that reaction. A lot of people use the website to symptom check and seek reassurance, which in itself is a problem.

Good luck, I feel you can conquer this.