Any men with this condition ?

[Rob Dove]

Years back I used to do alsorts - walking, climbing, and stuff, but it just ain't realistic, sensible, or safe, and since this thing struck (still waiting for the final confirmation of an LP, but from scans and stuff they reckon 90% certain IIH) there's no way I can do  half the daily stuff I used to, and looking back things ain't been right for a long time. 
Sounds like you got off pretty lite compared to some of the ladies round here.   

I get my kids involved in the activities.  They have even got life jackets for canoeing and the protective helmets for biking.  I have had IH for 6 years and I have an idea of where my limits lie.  I know how my actions can impact on my loved ones.  So my Wife is on board with this stuff.  Wife, Kids and house chores come first then activities come somewhere down the list!  I would say 90% is an accurate proportion of how much less time I spend on my activities.  So, something like your figure. 
But at least if I have a go when I am well enough and the family situation allows then - why the hell not?  If I can claw just a bit back from my old life now and then - so be it!  As long as it does not affect my family with me ill for 24-72 hours through pushing myself.

Although this did happen during the first 18 months when I was diagnosed.  YOU LIVE AND LEARN.  I used to do karate and work out on the punch bag as well.  Now that is only a pipe dream!  At least I'm glad my Son still does karate.

You are right, that I am fortunate enough to be able to do these activities now and then.  But just know that my symptoms have worsenned in the past 2 years and Diamox doesn't work like it used to - plus my left eye is not improving.  So I will do what I do for as long as I can. . .   When I have been laid up for weeks at a time (in the past) with no sight except a blurr, I looked for positive things to do.  Like listening to my favourite CDs, CD storybooks, phoning friends or relatives, even opening the window wide and savouring the breeze blowing on your face, etc, etc.  If you are too negative about something then your life becomes negative.  Si if you try to stay positive it goes a long way to improving the quality of your mental well being and your life in general.

[K-man]

Like the siggie line says.....live for the day

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    VVV

[StevePostie.]

Hi Aaron.
Another bloke is always welcome on here as we are a rare breed apparently,even rarer than David Cameron cracking a smile without Nick Cleggs hand up his harris!

Weight is one of the thorny issues regarding Neuro`s and IIH patients,the Neuro`s all seem to think that weight is one of the main causes for IIH and they always tell IIH patients to lose weight.
I`m sure that there are some people around who have lost weight and their conditions have improved(but I`ve never met any )I myself never thought I was overweight the Neuro did(there`s not many fat delivery posties about )so just to prove him wrong I lost about 16 pounds and my headaches got worse so go figure.
The headaches are a pain in the and I couldn`t imagine having to stare at a computer screen for most of the day,I can only manage about an hour at most these days.
Once again Welcome to the board!

[Mark-Nursery-Teacher]

Hi all, I'm new to the site. I thought i'd tell you about me and my journey........ It all started back in 2002 when I was 20. I contracted bacterial meningitis and spent a few weeks in hospital, after I came out I started getting bad headaches all the time. For years the doctors put it down to the after effects of the meningitis. In 2006 I saw a Neurologist in Leeds who put my headaches down to about 4 different types of migraines. Well the headaches didn't get any better and in 2008 I was in Middlesbrough at university and on Halloween I was admitted to James cook, luckily the consultant on call was a neurologist, after talking with me, or trying to I was in a fair bit of pain, he did a Lumbar Puncture and recorded the pressure at 43.5cm H20 so it was pretty high!! He'd manage to figure out exactly what I had which was IIH. For the next 5 weeks i had loads of Lumbar punctures (I forget the total amount) and the pressure was always high. Then my eyesight started to go funny so they all got together  and decided to send me to surgery to have a LP Shunt put in. I had this put in but then came back to sunny leeds and the silly thing stopped working!!    So I had a revision, but still the headaches remain  I have been into the LGI on numerous occasions as the headaches are still around. The neurosurgeons have said that there is nothing they can see that's wrong and the neurologists have started me on some new meds but seem to be pretty stumped which doesn't inspire confidence 
Well that's me I hope your still with me. if you have any questions please drop me a line and I hope to chat to some of you soon.

[Noreen]

Hi Mark   and welcome to the forum you've found the right place for advice and support. Is it Diamox you have been put on? I'm Noreen and here for Conor aged 14 and diagnosed back in 2008. Hope things get better soon.

[scoobysnack9]

hi all you men nice to have some good male humour love the sit down and wee one

[jamesstamford]

Hi,

New here and just diagnosed with IIH.

My diagnosis stemmed from a random eye test (eyesight was getting worse so went to Specsavers) and they found a suspected papilledema in my right eye. I was then sent to the emergency eye clinic at the local hospital where this was confirmed and subsequently went through the usual tests (MRI/CT etc to see if it was a brain tumor) and when I was told it wasn't and all I had was IIH, man was I relieved, that is until I researched it a few days later.

Had my first Lumbar Puncture in June (36.5) and so confirmed the diagnosis and been put on Diamox SR amd am having the usual side effects, pins and needles in hands and feet (and strangley knee caps) etc, but the funniest one is occassionaly feeling as though my face in covered in spiders webs and the more I try to wipe it off the stronger the feeling is  .

It has been great to browse these forums and read all the other experiences and see that all these weird things that are happening to me are the same, or near enough, as everyone else.

It does make me wonder how long I have had this. I had suffered from debilitating headaches for many years and these were always put down to sinus issues stemming from breaking my nose too many times playing rugby, but I have also been having shaking attacks (occasional) which seemed to baffle all the doctors that saw me all those years ago when they decided I had epilepsy and put me on drugs for that! I didn't have epilepsy and eventually took myself off the drugs as they did nothing. I have had occasional ringing in my ears for years too but that was attributed to be in the army and the damage done to my ears from all the shooting.

10 months ago I got a really bad case of flu which also caused vertigo and sickness. At the time the doctors said that this had caused the vertigo (labyrinthitis) and the now constant ringing in my ears with the whoosing/beating on occasion (tinitus) and that they would go after a couple of weeks  I wish!

After the LP where the consultant removed some fluid, I felt great for a couple of weeks, my mind cleared and my balance got better, and i really realised how clouded and fuzzy my mind had become (I work as a Techinical Consultant and it had been affecting my work), but then things started going bad again. Now my brain is fuzzy again, the damn headaches  , tiredness, balance issues and of course that nasty tinitus are all present everyday and worst of all the eyesight is continuing to degenerate.

Then to top it all i got told 3 weeks ago that i was being made redundant so now have to worry about paying the bills, mortgage, etc, which is hard enough at the best of times but when you can't think straight it becomes a much bigger issue.

Wow, it's great to unload all these pent up feelings, I try not to burden my family too much and to keep going as normal, especially during this troubling time, it's hard enough worrying about maybe having to sell the house and how I am going to feed them. But knowing I am not alone in this and there are other people going through the same thing gives me strength. It is hard to explain to loved ones what is going on, nothing is visible, nothing is broken and at times it makes me feel as though I am just making it all up, but I  am sure you all understand these feelings  .

Trying to make a positive out of all this, I am going to try working for myself for a while as a consultant, that way no one can complain when I need time off to deal with IIH.

Thanks for being here.

James

[scoobysnack9]

welcome james . im not a man but i just wanted to say hi . your story abit likemine had balance probs, neck, headache, boom boom in me earhole and when i bent down pressure to. dr,s said vertigo then arthritis of neck so had xray then i took meself to specsavers like you and thats where i got dianosed. thanks god for eye tests and specky,s .        sounds like you did have it before. i had a bad case of flu think it swine flu and took the tablets for it to never felt right after either. my lp was 33 and it gor rid of my symptond but have been havin bad eyes ache and nausea at the mo but luckily no heada like last time. what strength diamox you on? i still get the tingles one time my legs vibrated it was really wierd .  sorry about your redundancy i hope the freelance work out for you.  especially as you have a morgage how worrying this is all you need at a time like this. gr8 site and lots of info on here you can trawl through and people will try and anwer your questions if they can. i found it a life saver.     paula

[Nigel]

Hi James,

Your story is very similar to mine.  I had a severe bout seven years ago, when I lost my sight for a while and ended up having a vp shunt fitted.  That has been a godsend, although it seems to be getting a bit sluggish in responding now.

I was medically retired after my operations, but panicked on my notice period and got another job.  As of last Friday, I have now retired as keeping a very busy job was causing my health to deteriorate further.  I have now become a freelance consultant as it will enable me to work part time to balance workload and income.

You have my sympathy, this is not the best of times to be made redundant.  It will get better for you though so just hang in there.

Nigel

[Phil]

James,

Similar story to you.

Eyesight test at Vision Express. Told to go to A&E immediately. More tests. Eventually a head MRI to confirm no brain tumour and then Diamox and LP's.

A few more twists and turns involved but hoping to go back to work shortly after being off for 5 months.

Still have raised pressure and pap but manageable at the moment and hoping to start on Octreotide shortly to resolve pressure and pap.

Sorry to hear about the redundancy. Happened to me nearly 9 years ago from a brilliant job that I had worked hard to get. I ended up doing something completely different that would probably be regarded as a more worthy career to have. If you can make a go of it as a Consultant on your own you will probably find it better than being involved in a corporate environment. Redundancy can be a positive rather than a negative experience.

I wish you all the best over the coming days.

Phil

[jamesstamford]

Thanks all for the kind words. Off back to the consultant in a week or so and am sure he will up my Diamox as i am only on 2 tabs a day and it doesnt seem to be doing much. Not sure i am looking forward to that.

Quite excited about working for myself..... no more smelly bosses to order me around 

I'll keep you posted as to how it all goes.

James

[Fluffy]

Like Scooby i'm not a man but just wanted to say hi to you James 

Strangely enough i too have the pins and needles in my kneecaps (among other places) and the strange tingling/spiderweb thing on my face    so you're not on your own there!

Good luck with the new career - i'm sure it'll work out fabulously for you 

[jamesstamford]

Quick update.....

Went to to see the Neurologist (good bloke, I am lucky I think), and as expected he has upped my Diamox, we'll see how that goes. Strangely though he doesn't feel that the forgetfullness and balance issues (no dizzyness, I just wobble about and fall over) are IIH related and is scheduling another LP (yummy) along with a bank of cognative and balance tests and then maybe more brain imaging to make sure they didn't miss anything . At least he isn't lumping everything under IIH and forgetting about it .

Unfortunatley it seems I now have paps on both eyes and have the usual bank of eye exams in October to check them.

I will let you all know how the investigation pans out.

Oh yes, I spoke to him about applying for DLA and he was more than happy to sign it off for me when they contact him which was reassuring.

**A quick hint if anyone is planning to apply for DLA, go to the Job Centre and get the forms from there, they will date stamp them if you ask and you have six weeks to return them and then they will pay it from the date of the original stamp.**

James

[allanb]

hi my name is allan
just saw my neuro on friday and he is calling me back to hospital to run more tests
my first LP was 28 was told its a bit on the high side
was admited to hospital last month and had all the tests don ct/lp etc all clear but preasure a bit high
alos have noted when i get a sore head (back of my head) my BP is normally high 250/125 or so

still not sure if it is IIH but all ths signs are pointing that way
  for letting me talk

Allan

[Phil]

Allan,

To be honest your first priority has to be to get your blood pressure down.

If it is correct what you posted and your blood pressure is 250/125 then focus fully on that first.

Subject to your eyesight not being at risk due to your CSF pressure and you never mentioned that it was, look at the blood pressure issue first and foremost.

Phil