Please can someone help me be more rational. [Archive]

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flatterycat

07-01-18, 21:01

Hello

I’ve been a long time HA sufferer and go through bouts where it is worse and then months where I’m relatively ok. I’ve worked hard on my anxiety along with my doctor and know that things like reassurance seeking don’t help. Despite this I am here asking for it:weep:

Since 2014 I have been scared that I have a brain tumour because I experience Deja Vu and times when I get a memory trying to get in, a sense of familiarity but can’t grasp it. These last a few seconds. Googling back then took me in to sites on epilepsy and similar experiences. I then linked this with a BT causing seizures. I have seen my doctor on numerous occasions and even had a CT brain scan in Jan 2015 which was clear. Since then I have continued to have the memory things but after the scan I wasn’t too concerned. Since then I have found I get them more frequently and so have convinced myself that I do in fact have a BT. I know anyone reading this will ask how I could have one for so long, but I know you can have slow growing ones for many years.

More recently I developed a sweet taste in my mouth. I went to doctor who wasn’t concerned, but I still have it, nearly 2 months later. My food tastes normal. The taste isn’t bad and it often tastes a bit like toothpaste. However it can’t be as I get it most of the day, after eating especially (and nothing minty).
Obviously I have read about odd smells and tastes being linked to BT and so, along with my other weird symptoms I am even more scared.

As I’m writing this I can imagine people thinking I sound crazy. I am 49 with a lovely family and am just filled with fear. I’m trying to act normally for my 8 year old and am due back to work tomorrow (I’m a teacher). I started running a few months ago to try and help with anxiety and stress and for the first time today I missed my run - just felt like what’s the point if I have a BT. Terrible thinking I know.

Any support trying to rationalise my fears would be so welcome.

Thanks.

ankietyjoe

07-01-18, 21:19

Stop reading about the symptoms of a brain tumour and I bet your symptoms will magically reduce.

Self diagnosis has an accurate hit rate of approximately 0.0001%

flatterycat

07-01-18, 21:36

Thank you Ankiety

Trouble is I’ve read so much over the years that it’s hard to forget.

ankietyjoe

07-01-18, 22:24

Most people here have too.

The thing about not reading any more, is that you're not reinforcing unfounded fears and you'll have space to tell yourself you're NOT going to suffer a hideous fate.

Speranza

07-01-18, 22:29

Bless you. I have had the taste/smell things over the years. I have become convinced anxiety makes us fabricate them.

It is SO unlikely you have anything wrong, especially after a scan.

I'm convinced many of our fears are self-punishment because we feel we don't deserve the blessings we have. So we persuade ourselves they can't last.

flatterycat

07-01-18, 22:36

Thank you both for taking the time to write back.

I think that if I could get a brain mri and it was normal, I’d accept the symptoms. However, I worry that I would then move on to something else. I know my biggest goal is to be able to live with uncertainty, but it seems so difficult.

Speranza

07-01-18, 22:40

It's a shame we don't put as much effort into worrying about our HA as we do into worrying about our supposed illnesses!! ;)

ankietyjoe

07-01-18, 22:47

Another reason to not check symptoms. You'll satisfy one concern only to move onto another.

Almost any symptom you care to mention can lead to cancer if you look long enough. Even being hungry or cold.

Darwin73

07-01-18, 22:50

I think you need to hold on to the fact that your scan was normal andyou've been to the docs several times and as you said, they’re not concerned. If they had any worries at all, they’d whip you in for further testing. I have known people with both benign and malignant tumours. Sadly, the ones with cancer deteriorated very quickly and the ones with benign tumours were bothered by very obvious symptoms, which you’d definitely have by now if you’d had a tumour for ‘years’.

I think HA is magnified when we think of our children / families and how much they mean to us and we are almost scared to appreciate them in case something goes wrong. Running sounds like a great idea to keep fit and de-stress. Well done for taking it up!

flatterycat

07-01-18, 23:07

Thanks.

I know I have to work on the anxiety, but I also worry that I am tempting fate and if I ignore my concerns it’ll turn out bad. You know when you read stuff where people were told it was anxiety and it turned out to be x.

I’m stuck on the hamster wheel.

flatterycat

08-01-18, 17:45

I posted yesterday, so forgive me for starting a new thread.

I went to the doctor's this morning. At my last appointment I told her I had ear pain and the sweet taste in my mouth. I asked for a scan, but she said she'd compromise and write to the Neurologist and ask his advice.

She told me that he had written back and said that due to my family history and vague symptoms I should have an MRI scan. I asked her what she meant about my family history and she said that I'd told her at my last appointment that I had lost a family member to a BT last year. I explained that, this was true, but that we were related through marriage.

I freaked out that I have to have one. I asked her if it was more for reassurance and she said no, she hadn't mentioned anxiety to the neuro. She said she had mentioned my ear pain and taste and that he advised the scan because of the vague symptoms and family link. She went on to say that I should still have the scan. She also said she would send it through urgently as there had been a mix up with the initial letter and I had already waited a while.

I am a mess. So scared. I am terrified that I have BT. I had a CT scan back in 2015, because I was having weird symptoms then and it was normal, but of course that was a long time ago and I know that CT scans can miss small tumours, also, one could have developed since then.

I don't know how I am going to get through the waiting and have been reading terrible stories online about aggressive BTs.

Can anyone help me to get some perspective.

Sarah x

ankietyjoe

08-01-18, 17:58

MRI's scans are used to diagnose hundreds of non serious illnesses.

The GP is probably pushing you to have the scan so you stop coming back with BT worries.

nomorepanic

08-01-18, 18:02

Posts merged

flatterycat

08-01-18, 18:42

ankietyjoe

08-01-18, 18:55

I've had two chest X-rays, a dozen ECG's and a billion blood tests because of tachycardia, but I don't have heart disease.

Your symptoms could mean anything, or nothing, or more likely simply be down to anxiety (which can mimic ALL disease). There's no point even thinking about it until you know for sure.

axolotl

08-01-18, 19:59

In the last few years I've been sent for (in no particular order) an MRI, chest x-ray, nerve conduction tests, ECGs, ultrasound, neuro exam and a whole raft of blood tests.

Guess how many serious diseases I had after all that?

Doctors just sometimes want to rule out the unlikely. Doesn't mean they suspect anything. Sounds like you threw them a red herring with the relative by marriage too.

Look at it this way - an MRI will be a gold-standard test which can put this fear to bed, hopefully for good. You know deep down it's unlikely, in a weird way try look forward to the day you get your (clear) results and you can put this behind you.

flatterycat

08-01-18, 20:42

Thanks for your reply.

Do you find you get to the point where you think you’ve got away with it so many times that this time it will be bad. I have worried about this for so long and cant believe my symptoms can mean anything else.

X

axolotl

08-01-18, 20:47

Thanks for your reply.

Do you find you get to the point where you think you’ve got away with it so many times that this time it will be bad.

X

No, because that's superstitious nonsense when you think about it.

The fact you've been through so many "symptom" > fear > reassurance > new "symptom"... cycles should tell you this will be probably just one more to chalk in your long list of things you were certain would kill you and now can barely remember, and if you don't fix your anxiety there'll be many more to come.

toddsmum

08-01-18, 20:57

Thank you for replying to me again.
The doctor said that she wouldn’t send me for tests unless she felt it was needed, that’s why she wrote to the neuro as a sort of compromise. He has advised it based on my symptoms and what he thought was a family history.

:weep:

Could you ask for a phone consultation with your GP and ask if them to go through what exactly it is they are looking for based on your symptoms? That might give you a clearer picture and it may not be what you're thinking it might be. It's just a guy I worked with had tests and surgery for sinus polyps and I'm sure some of the symptoms he mentioned are similar to yours. He got an MRI too.

au Lait

08-01-18, 22:07

Memory problems can be due to any number of totally benign things. Even very common situations, such as a natural part of aging. Anxiety disorders can cause memory problems as well. My memory is definitely not as good as it used to be, especially during times when my anxiety is high.

As for the funny taste in your mouth, that can be caused by certain toothpastes or mouthwashes. Sensitivity toothpastes can cause a constant strange or sweet taste in the mouth.

cattia

08-01-18, 22:10

I think having the MRI will show you that your brain is absolutely fine but I know you will worry until you have it. I agree that the neurologist is just ruling things out x

flatterycat

08-01-18, 23:19

Thank you all for your support.

Axoloti - The superstition stuff is hard, be cause whilst I know it’s silly, I find I am too anxious to ignore it.

Au Lait - it’s not so much memory problems as such, more things like Deja Vu and having a sense of trying to remember something, but it going from my grasp. My GP knows that I fear a BT and have done for a long time. I’d ,Ive to believe that the taste is linked to my toothpaste- if only it was something as simple as that. Trouble is I get the taste most of the day.

Toddsmum - Mt Doctor wasn’t keen to get me scanned at all, but after writing to the Neuro, he said to get me an MRI because of my symptoms and the family history (which my GP thought was a blood relative) of BT. So I think that’s what they want to rule out.

Cattia - thanks, really want to believe that nothings is wrong x

flatterycat

11-01-18, 15:10

Hello

I had my MRI scan this morning (privately) and am an anxious mess.

I was hoping the the radiographer would give me a sign or some indication if it was all ok, especially as he'd chatted to me at the beginning about how anxious I was about the results, but he didn't. At the end he asked me I wanted a tissue and told me the scan would be read tomorrow morning by the radiologist and a report sent to my doc. He said I may get results tomorrow afternoon or Monday/Tuesday.

He then asked if I was with anyone and I said no. I asked him if I needed to be, to which he replied, no.

So here I am, convinced it's going to be bad. I can't eat or sleep with the worry.

Added to all this the taste in my mouth is more metallic today. When I put my teeth together there is a really strong taste of metal and the sweet taste is also still there.

I've thought back about the last few months and how I have been having more and more symptoms.
Back in May I had a severe vertigo attack where I was vomiting and couldn't walk. The doc said it was labrythitis, but it was such a frightening experience that I can't forget it.

I have also had moments where I have felt confused e.g I went into a shop and when I came out I felt disorientated for a moment as to where I was. Another time I was on a run and as I looked up the road I was running on looked unfamiliar for a few seconds.

Just before the vertigo in May I had a slight loss of vision in one eye for a few moments - saw the eye doctor who said it was probably a type of migraine (I do get a lot of migraines where both eyes have the zigzag pattern but not the headaches)

I have had deja vu like moments.

Pain behind one of my ears.

Worsening OCD.

Irritability, mood swings.

This all seems to add up to a BT, I really can't see how such symptoms can be anything else.

Sorry for going on but I need to get it all out.

axolotl

11-01-18, 15:30

It'a not a radiographer's job to tell you the results, whatever the outcome, and I'm not even sure results would be immediately available anyway.

Three working days at most really isn't that long to wait for a scan like that. I was waiting ages when I had an MRI.

This all seems to add up to me having a BT.

No it doesn't.

I had a severe vertigo attack... the doc said it was labrythitis

So you had labythinthitis.

I have also had moments where I have felt confused e.g I went into a shop and when I came out I felt disorientated for a moment as to where I was.

If that's a sign of a brain tumour, everyone in the world has a brain tumour.

I have had deja vu

So does everyone from time to time.

Worsening OCD.

These seems like a cause for your obsession with looking for symptoms, rather than a symptom itself, to me.

Worriedwellornot

11-01-18, 16:51

I was convinced for about a year that I had a brain tumour bc I could smell petrol when other people couldn't . I was always s looking for reassurance. Once that anxiety went away I couldnt smell it anymore. I'm still here and obviously don't have a b t . It's amazing what symptoms the brain can conjure up. Last week when my dr suggest I go to hospital with a suspect pulmonary embolism I was convinced that I had it. My pain ramped up. However once the all clear was given the symptoms subsided. I think as HA sufferers we have much more heightened senses and always looking on the negative

flatterycat

11-01-18, 18:05

Yeah I agree and I get it. It’s just that as I’m waiting for MRI results I can’t imagine it being ok.

At the moment this taste (sometimes sweet, sometimes metallic) is so strong and after reading people’s personal stories of BT, I know the metallic taste was experienced.

Thank you both for replying to me.

pulisa

11-01-18, 20:19

Please don't read personal stories of BTs. They won't help you, quite the opposite.
I think we can interpret reactions from radiographers in a negative way with HA, reading things into comments which aren't meant to be "ominous" but more like standard responses to patients' questions.
You just want to know the results now and the waiting is always torture but with a private scan you'll get the results much quicker. I do hope you get the all clear asap xx

flatterycat

11-01-18, 22:37

Thank you Pulisa.

My anxiety is so high that I can’t think straight at all.
I have had so many ‘scares’ over the years and so many scans/tests. All have resulted in normal results, however I see this as a bad sign...it’s like my luck will have run out. Everyone I speak to says it’ll be fine, no one is worried, however that too I see as problem and have had thoughts about how shocked everyone will be when they discover it is bad.

Since around 2007 I have a variety of tests, including kidney US, cystoscopy, hysteroscopys, breast US, mammo, Mri of head, mri of neck, ct of head, chest - rays and more. I know of no one who has had as many and that’s why I feel like this time it’s going to be a case of The Boy Who Cried Wolf.

flatterycat

12-01-18, 13:11

Thank you to everyone who supported me this week.

My MRI results were fine. However I know I have to sort this anxiety out. At the end of the call, my doc said she just needed to forward the results to the neurologist (even though I wasn’t under one). So now my anxious mind is asking why? If she requested the scan (based on neuros advice) why do they need it.

axolotl

12-01-18, 13:41

My MRI results were fine.

Isn't it amazing how we can literally hear those words and still our anxiety grabs onto any tiny toehold of uncertainty to keep itself going?

Congratulations on the all clear, now time to give that anxiety a good kicking.

flatterycat

12-01-18, 13:45

Thank you for responding again axoloti.

So can doctors tell you everything is fine, even if there’s still a concern?

axolotl

12-01-18, 13:48

Thank you for responding again axoloti.

So can doctors tell you everything is fine, even if there’s still a concern?

You have had magnetic imaging of your brain.

If the things you're fearing were actually there it would have found it.

Doctors just need to dot their i's and cross their t's so they can say they've done their job properly and send you on your way.

Now's the time to put this particular fear behind you and work on the anxiety before the next HA strikes (and it will).

pulisa

12-01-18, 13:49

I'm very pleased to hear this.
The neurologist advised the scan after your GP had consulted him so your GP is sending him your results as a matter of courtesy. Nothing sinister just professional courtesy.

flatterycat

12-01-18, 14:45

Rang my surgery back and explained my concern. They said they’d either get my doc to ring me. The receptionist just rang me back to say she’d spoken to doctor. Then she said “you’re fine, nothing to worry about”. Why not say “normal”.

axolotl

12-01-18, 14:58

Why not say “normal”.

I don't quite understand why you're still taking a negative after hearing the magic words “you’re fine, nothing to worry about”?

Your anxiety monster is freewheeling now, the doctor has cut it off from its source of power by giving you clear test results, its tentacles are flailing desperately, pathetically trying to hold onto anything that can feed as it starts to wither, latching onto to every merest hint of uncertainty and dribbling you lies that your doctor may be wrong, or lying, or incompetent.

Your anxiety will now be looking for something else to feed it. It will eventually make you notice and niggle about something else. It may be a twitch, or an ache, or a palpitation, or a spot... the actual fear is arbitrary. Now's the time to listen to your doctor on your all clear, and while you have some respite start making moves to get some professional help to kick your anxiety monster into touch, either through your GP or (if you're in England) IAPT. Good luck.

flatterycat

12-01-18, 16:15

I’ve self referred myself to Iapt. I’ve been through so much counselling and CBT over the years that I thought it was pointless, but it needs to be done. I’m also going to look into private therapy, though I’ve never really found a good ‘private’ CBT Therapist, they always seem more focused on the counselling side of things and, whilst I know that’s beneficial for many, I need practical support that’s will teach me how to live with uncertainty.

axolotl

12-01-18, 16:17