Brain tumour fear has taken over my life.

[Jase.]

I've been in its grip for just over a week now and I feel like I'm at breaking point.

My symptoms;

A new headache pattern. I don't normally get them but over the past couple of weeks I've had them literally every single day. What's worrying is that they seem to be worse on a morning and fade throughout the day. Painkillers do NOT help. Sometimes they'll come back at night. Sometimes it feels like the pain is across my forehead. Sometimes it feels like it's mild stabbing on the very top of my head.

Tinnitus. I've had it for around a year and a half now.

Vision issues. It only happens when I blink but it looks like the afterimage of a camera flash - this comes and goes.

Awful short term memory. Had awful memory for years now.

My leg and hand have been twitching. In bed this morning I kicked out for no reason - I'm reading it could be a form of seizure.

Had some left sided facial tingling.

I discussed things with my GP because I suffer with sinus problems. My ears also feel full. She doesn't think the sinus issues are causing it because that wouldn't cause pain on the very top of my head. She said if it's still going on in a couple of weeks to go back and go from there. She's lovely so I'm thankful I have a kind GP. She knows me so she knows what I'm thinking. Just said I'm 37 so I'm still very young to get them.

The only tests I've had recently are a blood test and a clear eye test.

I'm a wreck. I cried so hard last night. I'm forgetting what it feels like to live a normal life free from healthy anxiety.

[Jase.]

Slept for a grand total of one hour last night. Absolutely drained.

[Sparkling_Fairy]

Are you taking any medication? Could be a side effect from medication. I've been waking up with a headache every day for weeks that painkillers won't touch, and found out it was a side effect from the Pantoprazole I've been taking for 10 months. Only recently started happening.
I reduced my dose and I haven't had a headache in 5 days

[Jase.]

Are you taking any medication? Could be a side effect from medication. I've been waking up with a headache every day for weeks that painkillers won't touch, and found out it was a side effect from the Pantoprazole I've been taking for 10 months. Only recently started happening.
I reduced my dose and I haven't had a headache in 5 days

Just some regular medication I've had for years. Nothing new which would cause the headaches.

[Sparkling_Fairy]

Could also be that you're biting your jaw while you sleep. That's also something I do that I don't notice, but gives me really bad headaches in the morning

[Justme1970]

I find sleeping on 2 pillows or a lumpy pillow will give me awful headaches

[Jase.]

Sat here at 2:15am in despair, crying. The pain on the top of my head seems to have moved up slightly and is even worse. Painkillers haven't done a thing. I can't handle this.

[Lucidite1]

Hey, I've been there. In January 2021 I had all the symptoms that you listed here. I also discovered then, that I have unequal pupils in my eyes. The fear took over my life, it was the worst HA I've ever had. Even my eye test came out funny and I was told that my intracranial tension was high. But guess what, MRI came back clear, I wasn't even referred to it, as my neurologist was sure that there was nothing wrong with me.
I still get headaches (even made a thread about them recently), my tinnitus is here all the time (however gets worse when I'm anxious), my pupils are still unequal (1/5 of general population has unequal pupils genetically), my vision is better now, but I used to have blue flashes for a year, my memory sucks when I'm anxious, my face stopped tingling after I found another health worry, I often kick in bed for no reason - I guess it happens when I'm on the verge of falling asleep and my body reacts to dreams.
And I'm still here, didn't have any tumour when all these symptoms lasted. You are safe and alright ❤

[Jase.]

Hey, I've been there. In January 2021 I had all the symptoms that you listed here. I also discovered then, that I have unequal pupils in my eyes. The fear took over my life, it was the worst HA I've ever had. Even my eye test came out funny and I was told that my intracranial tension was high. But guess what, MRI came back clear, I wasn't even referred to it, as my neurologist was sure that there was nothing wrong with me.
I still get headaches (even made a thread about them recently), my tinnitus is here all the time (however gets worse when I'm anxious), my pupils are still unequal (1/5 of general population has unequal pupils genetically), my vision is better now, but I used to have blue flashes for a year, my memory sucks when I'm anxious, my face stopped tingling after I found another health worry, I often kick in bed for no reason - I guess it happens when I'm on the verge of falling asleep and my body reacts to dreams.
And I'm still here, didn't have any tumour when all these symptoms lasted. You are safe and alright ❤

Thank you my friend. Let's keep battling this horrible condition. I refuse to let it win.

[BlueIris]

Oh, yep, the unequal pupils thing, that absolutely broke me for a bit. I also get aura migraines. I actually went 27 years without an eye test because I was so scared of what they'd find; they found I could do with new glasses and my anxiety moved on, with a brief detour back to brain tumour after my first day with new glasses when I got 3 back to back auras.

Stay strong, friends.

[Allochka]

Hi,
had all your symptoms, all of them (pulsatile tinnitus, twitching, face tingling, persistent headaches) and more. In addition to yours I have auras and uneven pupils, like other posters here, and vertigo. All these symptoms do not point to brain tumor. They point straight to anxiety, probably with combination with some benign minor health issues!

[Jase.]

I'm seeing my GP (my regular who is lovely) tomorrow so we'll see what she says.

Still having the daily headaches. They're really all over the place. Sometimes I'll wake up with them, other days I won't. Today my dull headache started gradually over the course of the afternoon. Yesterday it started last night.

I need to get on top of things. I've been down many rabbit holes with my health anxiety over the years, but this one is pretty brutal. I'm buried right down at the bottom and it's a struggle trying to crawl my way out of it.

[Jase.]

Just got back home from my appointment. Once again, my GP was just lovely. She really is an absolute God send. She sat and talked with me for half an hour and I listed every symptom I had and she explained in detail why a brain tumour wouldn't be causing them. She did say that she'd refer me since I'd been having persistant headaches but she wouldn't be doing it from a clinical standpoint; it would purely be to put my mind at rest because she doesn't believe I have a brain tumour. She informed me she has 3,500 patients and only 2 of them have brain tumours.

I've said it before and I'll say it again; doctors like her are worth their weight in gold.

I'm seeing her in a couple of weeks so she told me to think on the scan and if I decide to go with it, she'll get me referred, but if not, that's fine too. I'm torn. If I have a clear scan, the relief would be out of this world. What scares me is the waiting around and the terrifying wait for results; I know what that will do to me. Got some thinking to do.

[Sparkling_Fairy]

I think if your GP can give you a reason for each symptom why it's not caused by a brain tumour, I'd feel pretty confident that it isn't one.
However if you still believe that it is, I would say get the scan.
Yes, the wait for the procedure and the wait for the results will be terrifying, but short term. Then you'll have relief. If you don't get it, you'll have anxiety over this for probably months to come

[Jase.]

Yes, the wait for the procedure and the wait for the results will be terrifying, but short term. Then you'll have relief. If you don't get it, you'll have anxiety over this for probably months to come

Yeah, that's what I'm thinking. I'm 95% sure I'll ask to be referred for the scan.

Thanks again to anyone commenting and offering kind words and support. It means a lot.

[Jase.]

So I've found a lump on the top of my head. No idea if it's linked to the headaches. It's not painful. Back to see my doctor again next Friday.

It's never-ending.

[ckelley116]

Fear of a brain tumor is what kicked off my HA and it was not the place to start. I really would've preferred easing myself into it. I went through all the symptoms - dizziness, vision problems, light-headedness, tingling, perceived weakness and shaking - and it turned out to be a combination of allergies and anxiety. The brain tumor hole is a really difficult hole to climb out of, too, so I can totally sympathize.

You don't say that this is what you're thinking, but I know well how irrational we can be when in the depths of an HA episode, so I'm just going to say it - you won't be able to feel a brain tumor with your fingers. It might be a bump you've had all your life (scalps/skulls can have bumps) but never noticed until now, when you're hyper-fixated on the area. It's also probably not the cause of your headaches, unless you banged your head at some point in the recent past.

You know what does cause headaches, especially at the top of the head? Anxiety. The contracting of muscles, which we often don't even realize we're doing, can really hurt after we've been doing it for a while.

You sound like you have a great doctor, and I hope with her help you can pull yourself out of this :)

[Jase.]

Fear of a brain tumor is what kicked off my HA and it was not the place to start. I really would've preferred easing myself into it. I went through all the symptoms - dizziness, vision problems, light-headedness, tingling, perceived weakness and shaking - and it turned out to be a combination of allergies and anxiety. The brain tumor hole is a really difficult hole to climb out of, too, so I can totally sympathize.

You don't say that this is what you're thinking, but I know well how irrational we can be when in the depths of an HA episode, so I'm just going to say it - you won't be able to feel a brain tumor with your fingers. It might be a bump you've had all your life (scalps/skulls can have bumps) but never noticed until now, when you're hyper-fixated on the area. It's also probably not the cause of your headaches, unless you banged your head at some point in the recent past.

You know what does cause headaches, especially at the top of the head? Anxiety. The contracting of muscles, which we often don't even realize we're doing, can really hurt after we've been doing it for a while.

You sound like you have a great doctor, and I hope with her help you can pull yourself out of this :)

Fingers crossed that I'll get there! Still crawling around at the very bottom of this rabbit hole but I'm fighting.

[Jase.]

Struggling today. Pain hasn't really been noticeable over the past couple of days but now it's back full force in the right hand side of my head. Short intermittent stabbing/almost like a nerve pain. HA is telling me it's sinister due to it being localized.

See my GP on Friday.

[ckelley116]

Sounds like a run-of-the-mill migraine to me. Mine are always localized, usually on the right side but occasionally on the left.

Stress is also a major migraine trigger.

[Sparkling_Fairy]

Yep, migraines is the first thing I thought of. When I was diagnosed with them 20 years ago, I was convinced I had a brain tumour. My GP asked me to describe the pain and I did and said: and always on one side, that's what's so weird! And he said: that's a migraine. Migraines are 90% of the time on one side of your head.
Mine also usually on the right side, but I have them on the left sometimes too. They always start behind my eye, and if I don't treat them they pull all the way to the back of my head over one side. Definitely not a brain tumour!

[Jase.]

Saw my lovely GP this morning. Sat with her for another 25 minutes. She felt the lump on the top of my head and said it's more than likely a cyst. Talked through the headaches that aren't really going and she still believe it's all stress related. She brought up the brain scan and my thoughts and I told her that I've decided not to right now; my decision comes from the fact I believe getting a scan is basically feeding my health anxiety and she told me for what it's worth that she totally agrees and she thought I'd made the right decision. If I do change my mind she said she'll happily refer me so if things do get worse (and fingers crossed they won't!), I've got that safety net there. Talked through different anxiety meds and she suggested I do some research/have a think about potentially starting some. Seeing her again in another couple of weeks.

[Mariemomma11]

I am kind of going through the same thing. Since Wednesday of last week I’ve been waking up with a headache. It is always one sided.
Mostly my right side. Headache that’s mostly behind my eye, sore neck, w little pain in front of my ear where the jaw is.. ibuprofen isn’t helping at all. Seems to get better as the day goes on and comes back before bed. Today I woke up and it’s right side instead of left. I get headaches sometimes but never like this and normally ibuprofen makes it go completely away. Not sure what is happening this time.