Headaches

[cjjaks]

I still get weird headache's like a heaviness all over. Its been a month. Does anyone else ever had this ??

[cat3]

Hi again Jakki. At the 4 week stage I was still in hospital and had just started to become conscious of my whereabouts. I'd been transferred to the rehab ward and my most abiding memory is of a permanent oppressive headache.

The headache persisted for another couple of months though gradually reducing in intensity. And now I still have occasional ones but having suffered from headaches pre-BI, things are pretty much back to normal.

I'm trying to emphasise what early days it is for you Jakki and what little medical intervention you've had. Quite honestly, I'm in awe of the way you're coping.

What pain relief are you having ??

[celtic2746 in reply to cat3]

hi cat how are you keeping ive not seen you on here recently hope you are keeping well ! thats my mum back in hospital so my depression has got worse again ! i hope you keep well david x

[cat3 in reply to celtic2746]

Hi David. I'll PM you tomorrow. xx

[cjjaks in reply to cat3]

Thanks cat. I ended up in a and e lest night. I had phoned 111 they phoned the doctor who in turn phoned 999 lucky it turned out to be an infection. And a wee infection too.

[cat3 in reply to cjjaks]

Urine infections can play havoc with our brain and can cause dizziness headaches & hallucinations. I hope the antibiotics will soon start to help relieve your symptoms Jakki.

Love Cat x

[cjjaks in reply to cat3]

Thanks for that info cat. Everything helps. My head is a lot better today. X

[sporan in reply to cjjaks]

Have to agree with Cat about wee infections messing with the brain. My father-in-law has dementia and because of a prostate cancer op has to use a urine bag so he quite often gets wee infections and when he does his dementia symptoms always seem to get far worse with more confusion and the headaches enormous.

From my days with kidney stones and kidney infection a good amount of daily fresh water helps as well, my target set by my urologist is 2 ltrs a day minimum.

Hope things resolve soon for you. Hopefully the anti-biotics should help a lot.

Best thoughts

Sporan

[celtic2746]

cjjaks i would like to congratulate you on how well you have come so far long may it continue !

[cjjaks in reply to celtic2746]

Thank you . it means a lot getting posts like this. X

[celtic2746 in reply to cjjaks]

cc kits nice to know we can help somebody but please keep in touch with the forum its nice to see how people are getting on hope you stay well david

[StrawberryCream]

It is still such early days for you with recovery and the headaches. For some with a BI however it was caused it is an ongoing problem but for others it does lessen and for others it is isn't a problem.

Best wishes

[cjjaks in reply to StrawberryCream]

Thank you. Hope it won't be too much of a problem. L am sure over time. I will get use to the headaches. And not worry too much x

[Matt2584]

In 96 I suffered very painful headaches even tonsilitis when I never had any tonsils!

I was then diagnosed with a brain tumour which led to hydrocephalus and other problems.

Anyway, after my first op, whenever I got a headache, my parents would worry. I could see why but the headaches I had were nothing like back in 96. Most of the time, my headaches were kind of like worn out headaches where my head has done too much thinking or has been awake for quite some time.

Over the years, I don't seem to get as many headaches which is a good thing indeed. I have also started to keep hydrated more and getting more fresh air.

Sometimes if I have a headache I go outside and take some deep breaths of fresh air, this does help.

So I either get worn out type headaches or I might get muzzy, foggy, stuffy heads, as I call them, where it can feel like the weather has reflected itself in my head. What I mean is, if it is kinda gloomy outside, it could feel gloomy in my head. And with a stuffy head I might wake up to see that it is bright and warm outside but I might have left my window shut. So not enough air in the night can be a bad thing too.

I always make sure I get enough air through the day and night.

Sometimes I even wake up where it feels like I have a weight in my head/thick head while lying down and I might have a dull ache in my head and after I sit up for a few minutes, the ache has gone.

MJ

[cjjaks in reply to Matt2584]

Thanks for that matt.... A lot of it is what lfelt. And a lot of eye opening too. Just thankful that mine was a that infection.

[lcd8 in reply to Matt2584]

Hi Matt. I too suffer from Hydrocephalus. But mine was caused by an AVM (arteriovenous malformation). I had my first Shunt fitted at 14 and have had several revisions since. Much of what you say rings bells. My parents too were (and are) always very panicky when I mention having a headache or blocked ears (since last time I got Hydrocephalus this is what happened). The headaches I used to have were awful. My head felt incredibly heavy and I would be crying out with pain. I'm glad to hear you don't get this but your issues sound difficult too. The brain sure is a funny thing.

[Matt2584 in reply to lcd8]

Hi lcd,

To be honest, I did not even know what hydrocephalus was at first and if I had it. I was about to start my teen years when I had my first op and I don't recall my doctors saying I had hydrocephalus and my parents haven't ever said that I had it either.

I basically taught myself about hydrocephalus by reading up on it on the internet. 'Water on the brain', 'caused by blockage' and so on.

It was only when I saw a poster that Headway had created that made me sure that I had it too. They had an image of the brain with causes of a brain injury. A brain tumour was one of them, I obviously knew of this but it also had hydrocephalus as a cause too.

I had a brain tumour that was, and still is, blocking CSF AKA hydrocephalus.

I too have had blocked ears, mainly due to wax, so I have had a few trips to my local GP surgery to get them unblocked. It is mostly my right ear that blocks which is the ear my shunt is next too.

A while ago, I did spot an ear syringe from amazon.co.uk and I tried that out on my ear, it is best to use in the bath. I thought it was great. Easy to use and it has a rubber tip so it won't hurt the inside of your ear.

I just kept squirting water into my ear and sucking with the syringe until I went death in one ear then removed the wax with my finger. Not very nice to say but it did the job :). And it saves me going to the doctors too :).

Times when my shunt has blocked or blocking, I have had a few symptoms. I have either become very tired, nausious or vomiting, confusion, headache. Last time my shunt blocked was when I was on holiday in Wales, of all places. The day I was not right I had a horrible headache, I was tired, I felt nautious and my sight/focus was out of whack, it seemed to me like My eyes were looking in two different directions.

Take care,

MJ

[lcd8]

Hi MJ. Ah yes, all that sounds very familiar. i began to get headaches at 12 and my GP said they were migraines. But they got worse and worse and none of the migraine tablets I was prescribed helped. I was in a lot of pain and also suffered tiredness and sickness. At 14 I was sent for a CT scan as a last resort and that was when they found a build-up of CSF. I was admitted to hospital as an emergency but the condition didn't seem to have a name then. Also I had no idea it could come back. So it was a bit of a shock when I got the same symptoms aged 17. I didn't know about my AVM then. The discovery of that gem came about 10 years later when i was offered my first MRI. It is inoperable and the docs don't know what effect it would have re Hydrocephalus even if it wasn't. Sounds as if you have found the 'cure' for the blocked ears. I'll have to try one of those syringes. Thanks for the tip! Very best wishes for the future.

[Matt2584 in reply to lcd8]

So you suffered headaches for two years and then had a CT scan as a last resort and found a build up of CSF!

I know that the flow of CSF is a slow process but we are talking two years! That is slower than I thought :).

I'm really sorry to hear of it though. But when you say that doctors never had an official name for the build up, hydrocephalus, that now makes me think why my doctors never told me that I had hydrocephalus, cos they wouldn't know what that was back then.

One of the other members on this site B_S_A AKA Ben, I am sure he had an AVM as well. He had gamma knife surgery to treat his. I don't know a lot about AVM. Maybe his was in a treatable position? I'm not sure.

Glad to help out with the blocked ears :), hope it helps.

Best of luck to you :).

[lcd8 in reply to Matt2584]

Thanks a lot Matt. Yep, thats right for me - waited two years before I even found out I had a condition. I was lucky it happened then though. Hope things were resolved a bit quicker for you. I'll have to look up the member you talked about in your post. There are 3 ways to treat an AVM and Gamma Knife is one of them. The issue for me is that my AVM is large and way down in my Cerebellum. Only one place does GK in this country (I believe) and they won't touch mine without other risky procedures to shrink it first. Ah well, things could be a lot worse and most of the time I just try to carry on with life as normal. No point in dwelling on these things, just makes you miserable. Best wishes.

[Matt2584 in reply to lcd8]

You are very lucky your docs found out about your condition eventually, even if it did take two years. Better late than never I guess.

My condition/diagnosis was within a year, probably within 2 months. I was lucky to have a great GP.

Your AVM is in your Cerabellum, so do you have trouble with balance then?

I was diagnosed with a cyst (2nd tumour) in 98 and I had radiotherapy on that. Six weeks of having the back of my head zapped, not nice and toward the later stages my walking balance became very very bad. It took my mum and dad to hold me up.

Complications arose and scans were showing that the cyst was pulsing and pressing on my brain, the cerabellum, which is the part of the brain which controls balance. Hence the very bad balance.

A few more operations later and my balance has got a lot better, not 100% but I can stand and walk by myself now.

I salute you though, there is no point in dwelling on these things. They just put you in a bad place and that is what nobody needs to go through :).

All the best to you :),

MJ

[lcd8]

Hi Matt. I'm afraid I can't access your last post. But if you need a chat you know where I am okay?

Louise

[lcd8 in reply to lcd8]

Sorry, got it now! I count myself as extremely fortunate. I do have balance problems and that is due to my AVM being in the cerebellum. But they could be an awful lot worse. As a child my parents always thought I was just really clumsy. I used to have a lot of falls and accidents. Nowadays although I can walk unaided my feet often twist themselves the wrong way so I stumble and if I get up fast from a sitting position I go a bit dizzy and have to grab onto something to steady myself. Walking in a straight line is out of the question at any time and I trip a lot or find myself walking in a funny way. Does any of this sound familiar? I'm not sure what others make of this. Does any of this sound familiar? You are absolutely right about dwelling on things. It does no good at all and I am a great believer in positive thinking. Best wishes and hope your issues get better soon.