My daughter was diagnosed a year ago with idiophathic intracranial hypertension

Yes Tina she had loss of vision just for seconds and we went to A n E Jan last to b sent home..went to opticiAn the next day..found optic nerves were inflamed..sent to Norfolk and Norwich immediately where a Mira scan confirmed water on Brian. Next day endured lumbar puncture and Tod low salt diet and put on tablets...still under neurologist n ophthalmic dept..no support at all from anyone and she has felt isolated and alone..Beth is 24 & still at home with us..thank God..but few friends as isolated by the condition young people do not understand her I guess..she is not up for nights out as she tires easily..but as,she said earlier to me...she actually wants to go out more..but her tiredness pulls her down..fortunately she drives and can get out about..but I feel she needs to b in contact with people who understand how she feels.even I have found it difficult to know how to be with her..push her to do more..or just be there..thanks for replying..

Oops Water on the Brain..not Brian...typing error...

lol

It isn't nice is it. It is an actual illness and people don't realise that. Emma has to has blood tests every 2 weeks due to the tablets she is on as they effect your liver function she to is under the neurologist he said she will be on these tablets for quite a while, she also has to see a dietician they are saying it could be caused by being over weight, she isn't massive but has put a bit of weight on since getting the depo injection which stops your periods as she suffers with terrible peiods. She also has physio as she has knee and back problems been for a scan for her back awaiting results she also goes to see someone about her anxiety etc. so many appointments for a young girl it's hard work. I do hope your daughter gets through this xxx

Thanks for replying Tina..like Emma they put some of it down to being overweight..she wasn't a big girl but she had put in quite a bit of weight, which was odd as she has always been a healthy eater, she went on low fat diet, stopped drinking fizzy drinks, the tablets they put her on aided that as she couldn't bear the taste of carbonated drinks. She has lost weight now, but the build up, they intimate is building..

Like Emma, Beth has been in a lot of back pain, especially in her coxsis, which they put down to Ankolosing Spondylitus, a condition her Dad has, then they decided she only carried the gene, so perhaps physio might be a good idea, still waiting.

When she visited the hospital, regarding her back, they went by x rays done over 2 years ago..unfortunately I wasn't with her, like u I work...as Emma is suffering, wonder if linked to the condition??..

The specialist she sees is quite an arrogant dismissive character, very blunt and dismissive..no help at all really..it is a worry as you know the symptoms can appear as almost laziness/apathy/ ext..non of which I am sure is the case..but so hard to understand or know how to "be" alongside them...Do you push them to "get on with it", so easy to fall into and I guess no help to them, or, as I do, almost feel inadequate to say or do anything...so hard...Is this a condition that she can receive financial help for, although she works part time her exhaustion is, at times, palpable and again from employment point of view, not understood at all...don't know if you know about this...?..

It has been good to meet up with a fellow Mum, been brilliant to find another who is walking this tightrope, I won't say path coz at least paths have solid ground, this is more like walking in the air..lol..

I hope Emma gets her back sorted too..

So you say difficult for one so young..although Bethany is 24 she is young for her age in many ways, not into clubs n lads, has few friends, most having done the above whereas Beth has never been overly bothered by this scene. I guess she's always been the "fixer", the one who was there for the underdog and didn't really go with the flow..independent young lady I guess..bless.

I hope Emma gets through this difficult time too and gets the answers she so badly needs addressed..

I will be thinking of you both and hope u will keep me posted of any developments and any help or support you need, please contact me..

Many thanks again..

Sorry if I went on, it's been good to link up...I am hoping Beth might use this site to connect with other suffers...it would be a help to them too I think..

Don't know if you received my last response as it disappeared..if I don't see it on here I will reply again as seems,some of what you mention lines up with what Beth is experiencing..

Ok so it obviously didn't..lol...here goes (again!!) Took me about 5 mins to get it down..then disappeared..ahhh..

Beth too was told needed to lose weight although healthy eater I must admit her weight had been building up, we had spoken to Dr prior to this about that...just told her her input/output needed adjusting!!.but nothing changed..

Since she was diagnosed she changed her diet oh so slightly to low salt, along with the tablets her weight has fallen, but her scan says fluids edging up again...

She is also suffering, worryingly, from headaches and sinus..as per pre diagnosed, but stress of situation etc, can u wonder..so little, in fact, no help, support or advise from anyone...then depression, tiredness ext press in.

Her specialist is very dismissive and arrogant and gives no answers or real help.

Halved her meds, now doubled them (Dec) as scan in Oct showed some increase..

No one really advises or directs to any support to assist with the unanswered questions..depression and anxiety set in so quickly.

Like Emma Beth has been suffering for months from back pain. They took blood test, decided she had her Dads condition Ankolosing Spondylitus from her blood tests

Then decided, no, she just carriers the gene...they looked at x Ray from 2 years ago!! and now waiting for physio..a real joke..

Could it be connected I'm worried..

Her pain is in the coxsix...the middle of back as well..

I wonder if this condition can get financial help as Beth can only manage to work part time, even then it is more often than not a struggle and not easily understood..

Thank you for replying to my comments ..it is good to meet up with another walking this "tightrope", I won't say path as paths have solid ground under them and this doesn't feel like anything is solid at all...

I hope Emma gets her problems sorted and that you keep me posted.

It would be good if both could use this site to connect and help each other on their journey..I know it has helped me already being able to hear from someone else as it can be a frustrating and lonely path when no one, especially myself, understands it...

Thanks again Tina..keep in touch and if I can be of any help I will definitely keep my eye out for your messages.

Let me know how Emma goes and send our thoughts n prayers to her..

Hear from you soon I hope..

Thanks again..

Oh can I ask what tablets is she on??

codiene paracetamol cyclizine for sickness and acetazolamide for the fluid build up 

not sure with regards to financial help because with emma being at college at the moment she doesn't get any. she is hoping to get an apprentiship in photography this year so fingers crossed as it will help her with meeting new people and chatting to them. she sees a social health worker for her anxiety got an appointment tomorrow for that and her first weight managment appointment. i will keep in touch. you should look for me on facebook Tina Grant x

Thanks Tina..same here I am on Facebook Mary Jones, I am from Norfolk..couldn't find you as too many Tina Grant...probably same as Mary Jones Lol...

I am from leyland lancashire and the photo of me is with my head tipped to the side with my mouth open and tongue out long dark hair xx

Thanks found u...hope Emma is feeling better..Beth is struggling the moment but hopefully her strength will return and she will find positivity..it's a hard walk this one..