Hello , im new to Headway....

[Shinonz]

Hi , my name is Siobhan and i was born with hydrocephalus - congenital hydrocephalus.

17 years have passed and i think im suffering from the side effects now , I dont know what to do to combat my struggles

I have so many health complications throughout my teen's and i was wondering if it will get worse?

I was also diagnosed with SLE ( Lupus) and VWD ( Von Willibrand's Disease) 2 years ago , then undiagnosed from the lupus 6 months ago

I have lately been suffering from symptoms such as:

Dizziness

Severe headaches

Memory loss

Loss of directions

Fatigue

Shaking

Numbness of limbs

Tunnel vision ( it goes all black and afterwards i have a severe headache )

Joint pain and muscle pain

It would mean alot if anyone could help or give me any advice because i really need it.

Thank you for your time x

[bikerlifestyle]

Whilst I have no information regarding your condition, nor can any of us really offer realistic advice as to whethet things will get worse as you really need an expert to give you that info

what we can offer is support for the symptoms and living with a brain injury a lot of those symptoms are familiar to a lot of the people here so there plenty of support just ask away

[Shinonz in reply to bikerlifestyle]

okay , thank you x

[bikerlifestyle in reply to Shinonz]

it was a bit short n sweet as i typed it on my phone

but i think if you can be specific in your questions, problems etc.. then we can help more

i think you need to chase up your consultant/gp and get referred to a neuro doc

by undiagnosed with lupus, do you mean the symptoms stopped, you got better or do you mean you were wrongly diagnosed

don't forget stress can also cause or add to some of these symptoms too

i think your first step would be to get a referral to a consultant that can check out the congenital hydrocephalus and decide if the issues are from that or not,

giving Headway a call on 0808 800 2244 9am-5pm. Calls are free

they can advise who you need referring to etc..

once you confirm or rule out the head injury side, then you can chase up from there.

but in the meantime there is lots of support and advice here and from headway themselves and we are a friendly bunch (mostly after we have been given our first coffee and or meal of the day lol)

-Mark

[Shinonz in reply to bikerlifestyle]

none of my lupus symptoms have gone , so i think its still here

Its really difficult to get doctors that actually listen , ive been going at this for about 3-4 years now , i know its not that long compared to others but it is still long for me and plus with the doctors they have to refer you to another doctor who will refer you to another and another and so on

thanks so much for your help , i really appreciate it xxxxx

[iforget]

Hi there... I can't offer advice on your medical conditions (I'm not a doctor) but I have VWD too ...it is unrelated to anything to do with this group of course, but I have come across very few people who have even heard of it so thought I would just say hi

[Shinonz in reply to iforget]

Hey haha i havent met anyone with vwd either lol xx

[SAMBS in reply to Shinonz]

Hi Shinonz,like the others I'm only a TBI member, so can't help specifically on your other conditions - I old enough to be your Grandma I reckon - 66 - but what I will say is just keep banging on those doors and insist on getting proper help - as Biker said - you need to see a specialist consultant who deal with your conditions. It may take a lot of door knocking but as life has taught me over all those years, whatever the situation, persistence can and very often does overcome resistance . I wish you well in your search for answers but again as Biker said - we are great friendly support network of members here - we all know what the others are going through because we are or have been in the same stages of recovery from our own Brain Injuries.

[Shinonz in reply to SAMBS]

Thank you so much xxxx

[cat3]

Hi Shinonz. I'm wondering whether you had surgery , originally, for the hydrocephalus ? All the issues you've listed are familiar to me except maybe the numbness and tunnel vision (mine was subarachnoid haemorrhage). I'm 21 months on now and still experiencing those other symptoms, especially the fatigue, dizziness, headaches and memory problems. But as both biker and SAMBS have said, we're none of us qualified to say what's- causing-what, so all we can really do is compare notes and sympathise. and you need specialist help.

It sounds like you're not being heard, & therefore some professional support might just get you on the right track so I really think you should phone the Headway helpline today. They don't just talk, they can offer practical assistance where needed. Biker has given you their number and service hours so go on, Shinonz, make a start today. Good luck & let us know how you get on. cat x

[Shinonz in reply to cat3]

No , i dont have a shunt or anything but when i was a baby i had fits so the doctor perscribed me with a drug to stop them but i cant recall the name :/

Thanks for your help

[cat3 in reply to Shinonz]

And what about the helpline......will you phone ? I've seen some really desperate people on here who've resisted phoning, for one reason or another, but when they've finally done so, and got the help/support they badly needed, they've regretted not doing it earlier. x

[BaronC]

Much like the other replies you've so far received, I can offer no advice regarding your diagnosed conditions (sadly) but I can offer lots of online tea and sympathy. This brain muddled 'club' is certainly a help to myself and those of us that use it and I hope we can be there for you too. Never be afraid to ask for help. I may have a brain injury and none of the conditions you describe, but I will help if I ever can.

Andy