First topic message reminder :

Hello
I've just seen the Neurologist this morning, and he agrees with my optician, ophthalmologist and another couple of doctors, that I probably have IIH. So I am on the waiting list for LP to check my pressure.

I just wanted to say hello and say a big to all the contributors on this forum. It has enabled me to go the appointment feeling well informed.

I feel very fortunate that I do not have the headache that so many of you are suffering - I cannot imagine how that must be.

What I do have are swollen optic discs - and apparently slightly worse today than when my optician spotted this in December 2012, funny visual symptoms - flashes, greying out, blurring, feels like I am looking through a dirty windscreen. I gave the consultant the "before and after" pictures of my optic discs - I have a forward thinking optician.

I also have a range of other neuro symptoms, but the consultant today is reluctant to see these as IIH symptoms, as they started 3 years ago, when I was very unwell, but at that time my optic discs were ok. These include permanent bad balance / vertigo, particularly in the dark, generally finding it difficult to walk at a pace, especially in tunnels (e.g. Underground), feeling like I am slightly drunk all the time. Also, hormonally related numbness in my face, loss of power on one side, cognitive and vocal "clumsiness". This is all what I had 3 years ago, much more pronounced, and not quite back to normal. At the time they said it was migrainous (no pain though) and vestibular. Personally I think this is all related, wonder if my pressure increased around that time, but didn't show up on my optic discs until a little later?

I had an MRI a few weeks back, which came back normal, although there was no reference to this in my hospital notes, so the consultant was about to refer me for another one. He checked the computer, found the results and said I may still need an additional one to look at venous sinuses specifically. (I need to google that now!)

I also have resistant hypertension, but he feels that my high BP is not enough in itself to be causing this. My medical consultant (very lovely chap, completely looked at the "whole picture") agreed, as my eye blood vessels are OK.

So, I do feel a little fraudulent being on here as I'm not diagnosed yet. Is it bizarre to hope that my LP does confirm IIH, so I know what I am dealing with? As if it doesn't, we have no idea what's causing it, and therefore I worry more about vision loss. The ophthalmologist said "I will have to cross my fingers and hope for the best for you" when I asked her about vision loss. I think that was probably not the most helpful comment.

I am overweight, and have been given the usual "lose 10% in 3 months". That's OK. I know it doesn't help everyone, but I have to give that a go and will meet that target.

One question I do have - the consultant was a little concerned that I had a lumbar fusion at L5-S1, over 20 years ago. The disc was removed and replaced with bone from my hip. He said that could cause problems with the LP. But they will try first with the junior doctors (he warned me it might be a "senior, junior doctor"), and then change to radiology if they can't do it. I didn't ask too much about this, as I have had a successful epidural, in labour, since the back surgery so figured they've poked around in there before OK. For my back surgery they went in through my abdomen, which many doctors are surprised to hear. So I wonder if he didn't know this, and assumed there would be a lot of scar tissue on my back - hence the expected problem? Does anyone have a similar history?

It does sound like I am a walking set of symptoms and complaints, so I will add that I am otherwise well and happy, have 2 fab teenage boys and work self employed - full time.

Thanks for reading.

Thanks Diane and Julie
I am marginally better today, but still have a headache and too busy to be able to lie down to relieve it.
I'm waiting for the Neurologist's secretary to call me back to let me know at what stage this becomes something that needs dealing with, rather than a normal side effect. I'm away on business for the next couple of days so wanted to make the call now, in case it's still bad on Friday - the next day I could see someone.
I don't have any symptoms at the site, so I suspect they'll say its just from the reduction. But the last thing I want to hear is - let us know in a few days - and then they take a while to fix an appointment, because then we're into a holiday weekend, so there would be further delay. (I like to plan ahead!)
Diane it sounds like you are going through a particularly rough patch. I hope your stent surgery goes smoothly. I'll check this forum for your updates. Wishing you well.

Thanks for that - another sleepless night here - it's 3am - but I am at work ( teh office is across our driveway!)and it's peaceful and I am grateful that I have something to do!!
I do hope that it is just a temporary LP symptom - they are strange things - it is the very core of us that they are fiddling with after all. Get well soon. Diane

Hi! I had this same problem following a spinal tap and it cleared up on its own after about a week, without a blood patch. I did stay laying flat as much as possible during that time. Just thought I would share my experience, in case it is helpful. Glad you are feeling a bit better today.

Thanks Diane and Bananasmom.
Its actually got gradually a bit better during today. I've had to stay upright, working and running around - no choice today. Hurts horribly if I move my eyes though - just found that out when reversing the car!
Your support is much appreciated and very reassuring.

Just an update. I am completely back to normal - no more LP headache etc. The slight improvement I had in my vision has reverted, so I am back to being a bit blurry unless I try hard to focus. Don't get me wrong, my vision is not bad, but not what it was a few years ago.
If you've read upthread that I was waiting for the Neuro to write to me, don't get excited, there's no update there.
I have spoken to his secretary earlier this week. She tapped my details into the computer, and said that because my hospital notes were still with another department (I had a separate appointment a week after the LP), the Neuro had not yet reviewed my results. Tap tap tap and she said "Oh, I can see your results on the system, so I can tell him they are there and maybe he can review them without the paper notes". Given that the results will only be a pressure reading of 25, and possibly some microbiology results, I should hope he should be able to do that.
Then he will write to me, but they have a 10 day backlog on dictated letters as the system was down for that long. I'd heard about that when I rang the previous week, a different secretary told me about it, but rather patronisingly said that I would have been informed if there was anything "medically urgent". Now, i wonder, how on earth could that have happened as it seems NO-ONE has reviewed my results to even know if they added up to anything of note.
Gives you no confidence, does it? Surely a simple bring forward or follow up should be in place?
Aaarrrggghhh
But otherwise I'm dandy and life is good!

What she means by medically urgent is that because it's not life threatening your letter wont be one that goes out asap. Your Doctor will have seen your results because he gets a report sent to him, and he can also see it on their computer system. Doctors are notorious for having a tendency to have notes lying around in their offices for awhile, before passing them to the Secretary to type up the letters, then they go back to them for signing, which also takes a while. I know this because I worked for the NHS for 15 years, and for 12 of them in Patient Administration, where we were constantly having to go in and out of Doctors offices to find patients notes, and to their Secretary's who would always have a large pile of them in their offices.
It's very frustrating I know, because you expect to find out something out not long after an appointment. You could always try contacting your GP in a few days to find out if he has heard anything back from them, and if there was anyway he could. Always worth a try.

Thanks Heidi, your comments make sense. However, she was very sure that he hadn't seen them AT ALL yet, but you're right, maybe something does get sent electronically to the Neuro. Frankly I wouldn't be sure of this, this hospital is notoriously bad for this kind of thing, and I've experienced it already with the ophthalmologist not having a clue about the MRI I had done.
She did offer me an appointment for 11 June to go through results, but I said that wasn't what he had said he wanted to do, so I didn't want to take up an appointment yet - as he said he'd see me in July (and I haven't reached the weight loss target yet so need a few more weeks - last thing I want is them dismissing me because I haven't managed to fully comply with their "treatment" yet. I've lost nearly a stone - about a stone to go!!). I'm confident my GP won't know anything before him, I'm being copied in on any letters they send to my GP.
It's just frustrating, but I'm not worried.

so glad you are feeling OK. I definitely don't feel OK with an ICP of 25. but it sounds like the swollen optic discs are still an issue, and that this is being ignored. maybe I missed something. are you on Diamox, or something to reduce your ICP? what are they doing for the optic discs? you don't want that to suddenly progress. have you seen a neuro-ophthalmologist? now that you have your LP results the ophthalmologist should be able to prescribe something.

Hi Sophiasmom, appreciate your quick reply.

To answer your questions. I have no idea if my optic discs are still swollen. No one has any plans to check. I could take things into my own hands and keep visiting my optician for him to look, but thought I'd wait to see what the Neuro suggests first, hence chasing up for the promised letter. However, as the Neuro told me that its rare that ICP stays low after a reduction, and that it usually goes back up farily soon, I doubt if that reduction from 25 to 21 alone will have done anything. Symptom wise I am identical to where I was before the LP.
I'm not on medication. The plan was - have LP, lose 2 stone, come back and we'll review things in July and I'll write to you after the LP if I want to change that plan. So, if they think losing the weight will fix the problem, they won't put me on medication at the next consultation (probably July), as they won't know if it has had an effect on the ICP. If my optic discs have improved by then, that will be great and job done, but I understand they can take some time to revert. So if optic nerves are still swollen then, I imagine I'll be needing another LP, which will take a few weeks to organise, and then a few weeks to review results....... back to square one? I think if I had headaches (and I am incredibly sorry for those of you who do) I would have another indicator of where I'm at. I imagine that because I don't, this makes me less urgent?
I've no plans to be seen again by ophthamology. As far as I am aware, as my eyes themselves were healthy enough, they passed me onto neurology. They say the optic disc swelling isn't something they deal with.
So, when I say I am feeling OK, I mean I still have blurry vision, dirty windscreen effect, left side of vision fades out / blackens when I stand up, have trouble balancing, have trouble walking in a straight line, perceive the ground and walls to be moving a lot when I walk, have peripheral tingling (this is new - for the last week or so - several times a day I get pins and needles in my hands and feet, and often a "dead" arm or leg). But my mood is fine!!!
Take care all.

Oh my goodness. With your list of symptoms, I would be contacting EVERYONE to get something going, like yesterday. As each day passes, your nerves are being injured. Your vision, which an ophthalmologist should certainly cover if they have any knowledge, sounds like it is being affected by the optic nerve swelling. Again, I would be raising holy hell. Is there a spec savers near you? Seems they do a great job of picking up IIH.
I would also be contacting PALS and stay after them and your doctors both. You need to speak up. Don't let this drag on and on. Yes, losing weight MAY help, but there are many, many people who have IIH that are NOT overweight. It can be hormonal. It can also be idiopathic, of unknown cause.

I agree. weight loss can take too long. you need to do something about your optic nerves, YESTERDAY. find a neuro-ophthalmologist if the ophthalmologists are so useless.

Agreed..get to a neuro-ophthalmologist or at least some sort of optician that will check your vision..maybe they would advocate for you with the neurologist or pass you onto a neurosurgeon. The affects can be reversed if caught soon enough, but you can end up with permanent damage if they don't do something about your vision.

Good luck!!!
Julie

I'm so glad that the headaches are not a problem, but I worry about your vision. Unfortunately, vision changes can be so subtle that you won't notice them. I still say to push for being seen. And, my opening pressures have been between 22 and 24, and my docs said that I do have IIH. Those darn numbers are only guidelines. My body prefers the pressure to be closer to 10. There's a huge difference between 22 and 10!!

Still no news. I'm going to call again this week.

All I can conclude at the moment is that the Neuro doesn't think 25 is anything to shout about. If that's the case, I'm going to need a second opinion, aren't I?

I appreciate everyone's concerns to get this dealt with urgently but I'm not sure what more I can do if they don't think there's a problem, until I hear from them anyway. And I am sure there will be nothing else offered if I don't lose loads of weight.

I think it's difficult to describe symptoms in writing. I have all the things I described above, but I am still able to work, drive, read (have to keep refocussing in a way I didn't need to before). So I have these problems, but not too badly. I make adjustments to my life, but I get on with it. For example, I've just been to the cinema. There was no way I could walk down the stairs in the semi-dark without clinging onto the seats or my husband. The steps were swimming in front of me and I can't trust my feet to know where they are. I feel like I'm falling over and I often do stumble. That's not normal, but I can cope. And anyway the Neuros believe that's nothing to do with IIH, is just (!) a vestibular problem from the illness a few years ago (When I believe the IIH started, but was not investigated for that at the time)

My vision is fine according to opticians, but I know its a lot worse than it used to be. But because I can squint and refocus my eyes to see the charts, I am deemed fine.

Sorry, this must sound as though I'm not taking on board what you've all said, which is not the case, but I am battling the rubbish UK health system.

I'll call the secretary tomorrow and if no joy there I'll make an appointment to see my GP and see if he can kick ass for me.

It would be great if you could get GP on your side..sometimes specialists are a little more responsive to another professional. You could always contact PALS too..see if they can advocate some more immediate intervention.

It is good news that you don't have papilledema or holes in your vision, which they would determine the the visual fields test. My vision varies depending on my pain and activity level, but overall 20/20 w/ my glasses..it can be frustrating to be told you're ok when you constantly have these changes, but good you don't have the symptoms that can cause permanent blindness.

We definitely have to adjust our lives to IIH, but can still have a decent quality of life once symptoms are controlled. Some of your symptoms seem beyond IIH, so I would definitely keep on the doctors until you get some answers.

Good luck!!!
Julie

Thanks Julie. Secretary wasn't in today so I called PALS and they're looking into it for me.

I'm confused about what papilledema actually is then? I have swollen optic discs (no defined disc is visible on the pictures - the edges are very indistinct and jagged), and I have high pressure, so what else would I need for it to be papilledema? Various internet sources say this is what it is.

Here's a link to ihrf's explanation of papilledema:

http://www.ihrfoundation.org/intracranial/hypertension/more_info/homepage_feature/intracranial/hypertension/info/C140

eek im so sorry :( That waiting game is not fun. Sounds like you almost have this mystery solved, and hopefully they can start making you all better I felt so much better just having a diagnosis... something to call this pain ive had for so long. Keep us posted!!!! Hope all is well

Hi again and thanks to those reading and following my story.

Well, today I have a letter. Not addressed to me, but addressed to the ophthalmologist who referred me to neuro - the one who said it was "over to neuro" and regarding my vision "I'll just cross my fingers and hope for the best for you".

I won't write out the whole letter. But essentially it says (with some specific quotes):

opening pressure 25, reduced to 21. "Unfortunately I don't have her notes and am unable to comment whether the lumbar puncture led to any reduction in the symptoms as this would support the presence of a relevant IIH."

"The CSF glucose was recorded at 3.7mmol/l however there was no paired serum specimen to make the former interpretable."

".... pressure would be in keeping with borderline IIH; however this is not a reading which would be unusual with her body habitus. Nevertheless it would be important to know whether the LP led to any symptomatic relief in which case there is an argument to start Acetazolamide to see if this helps to keep things at bay. Regardless... as advised.... lose 10% of her weight."

Soooooooooooo - he wants to know if the LP helped, but at no point has anyone asked. And the action is what? A passive "would be good to know". Just who is supposed to check this out with me. Am I supposed to glean from a letter sent to the ophthalmologist that somehow that feedback should have got to him. How, by ruddy osmosis?

And as the main symptom they are worried about is the swollen optic discs, it would suggest someone should have looked in my eyes by now.

And how on earth does he think having my notes would have helped him uncover this mystery of my symptoms. The letter was dictated 5 weeks after the LP. How about you walk round to medical records and get the notes and see that maybe you should have arranged some kind of follow up if you wanted to know if I had improved.

And then, clearly it's not IIH as I am overweight - presumably that's the "habitus" reference. If 25 is not unusual, why did the radiologist reduce it?

Oh, and maybe if you needed a "paired serum specimen" you should have asked for it. Pointless getting the glucose tested if you can't interpret the results without it. (I've googled and the 3.7 is normal, but they also want to see it is less than 2/3 blood levels - so I'm not worried about this)

(BTW I also had 5 white cells, google says 0 to 5 is normal)

Can you all tell I'm just a little hacked off. I've asked for a call with my GP - he should call at end of morning surgery today, so I'm hoping that by blasting it all down here, I can have a calm conversation with him.

Thanks for reading.

Update...

Good chat with my GP. Lets just say he is surprised the results weren't reviewed until I prompted it, saying "you'd think they'd have a pending file".

Thinks I may now get a appointment for ophthalmology for them to find out if I have any reduction in symptoms, so they can then report back to the neuro with that information.

So, I will say "yes I think my vision was a little less blurry for a couple of days". They will look in my eyes to see if the optic discs are less swollen (as if they would be from a temporary reduction???). Then they will take eons to write to the neuro in the meantime I'll have seen him again and he'll have asked me the same question and done the same observation.

Grrrr going to forget about it as much as I can now.

That is soooooo frustrating!!! It really is one of the reasons that we encourage people to keep a symptom log..by the time the "specialists" get around to us we've already forgotten or somehow changed it in our minds. Seeing an ophthalmologist will be good on an ongoing basis, but they're not going to be able to tell anything from your LP at this point. You might want to ask the GP or ophthalmologist for a referral to a different neurologist..he didn't even have the radiologist take your pressure into normal range or request all the info he needed..he's either incompetent, uninformed, or too busy. It sounds like you'd be perfectly justified.

Hi again

Little update, or more accurately, a precursor to an update...

I see the Neuro on Monday.  Here's a question for you all... He asked me to lose 2 stones (28lb).  I've lost one. (14lb).  What's his response likely to be?  "Well done for what you've done so far", or "You haven't helped yourself so I'm not going to help you".  Given that he says ICP of 25 is not unusual, I think the latter.

Very blurry today.  Still driving safely etc, but I think the heatwave here in the UK is swelling me up all over.  Ankles and feet are not looking very nice!

I had to stop taking a diuretic another consultant prescribed, as the side effects were unpleasant - really aching limbs.  I'm seeing him again on Weds, so will discuss an alternative, to get my BP back down again.  The diuretic had worked for that so it was a shame to give it up.

Thanks for reading, and please vote in my straw poll for what the Neuro will say...

Either:
Well done on losing a stone
Or:
Tut tut not good enough.

And I'll report back!

Good to hear that you're doing alot better, but I know what you mean about the way you are left just hanging, it's very frustrating. You feel like you are a nuisance because you're asking for information regarding your health, yet you're met with an almost unsympathetic and bothersome attitude by the very people who are your only means of communication. Most of whom are full of their own superiority.

Recently I had to have a kidney scan which showed a cyst in my kidney had grown and changed from previous scans, so I had to have another. As I had kidney cancer in 2010 which resulted in surgery, there was a lot of anxiety and worry as this was my other kidney. After a week and a half I phoned and was told I needed another scan and a letter was on it's way. By now 3 weeks had passed and we were all by now on edge. I phoned and left a message on my Consultants Secretary's machine, as she only works 3 days a week. After another week she rang and left me a message to tell me my results were fine and a letter was sent out on the 11 July.

By then 11 July came and still no letter, infact the letter didn't arrive till the 17th. I have a complicated cyst with a 13-50% chance of it becoming cancerous, and I have to have another scan in 6 months. What struck me about this letter is that at the bottom it said dictated and sent unsigned to avoid delay, but the letter had been sent SECOND class. So I had waited for 4 weeks to find out my cancer hadn't returned.

It amazes me that it has been ALL over the news in regards to the failings of some hospitals in the UK, in terms of treatment, waiting times, patient care etc, and this is why we are having the NHS reform, so why then are we STILL being treated as uninportant when it comes to waiting on test results, such as yours and mine, which we are desperate to know and have a RIGHT to know as quickly as possible.

I would suggest that you make clear to your Doctor that you aren't happy with how this has been dealt with, because that is what I will also be doing. As PALS is no longer we can only speak for ourselves, until this charity is registered and we can then be in a position to advocate in a more authorative way. Which will be happening in the very near future.

PALS is no more?  How awful.  I hope things change and for the better real soon.  

Minniecat, as much as I would hope that your neuro will be supportive and praise you, I am afraid that is just wishful thinking.  Please bring a copy of the handouts available on this website regarding weight and IIH.  Gggggrrrrrrr!  Makes me furious when these docs get so narrow in their thinking.
Hope your appointment goes well on Monday.  Maybe we'll be pleasantly surprised.

Thanks Wylee

I may not be looking in the right place, as I can't find any handouts specifically about weight.  The only thing I have found that refers to it would support the doctor's belief that it will fix things (as it would decrease papilloedema and put the IIH into remission).

Is there something I am missing?

Hello all and thanks to those of you who are following my story.

I have seen my neuro today.  He started by asking if I had any relief from the LP.  I put this one back to him to ask which of my symptoms he considers relevant.  He said only the visual obscuration - doesn't consider any of my balance, numbness, etc to be related.  I said then, yes, it did improve for 3 days.

He reports that my optic discs are chronically swollen, but no longer bulging.  Apparently this is progress.  I'm going to pop to the optician this week to get him to take pictures and show me.

He was actually pleased with my weight loss!  Wow!  But of course, says to keep going.  I've decided I may ask my GP to see a dietician for a bit more support on this.  It's not a matter of education, but one of will power, and I think if I was seeing someone for a weigh-in that would help.

He has not referred me back to ophthamlology, says there is no need.  He did some basic sight tests today.  I could tell from those that my distance vision in one eye has deteriorated.  I'll get my optician to compare with the last tests he did.

Finally he's prescribing topiramate, aiming to get up to 50mg twice daily.  I can't start this for a fortnight as I need my GP to write the prescription and he's away on holiday.  I've read about it on here, and a few other internet reports.  Side effects, for those who have them, look rather dire, and I am very worried about getting very dopey.  I may be about to start a major new work contract where I cannot afford to be anything other than on top form.  But I guess it's worth a try.  Weight loss as a common side effect will be welcomed, and he feels it will control some of the migrainous symptoms I get.

So, good result I think.

Will let you know how I get on with it.

Hi there

Just a quick update.  I've been on Topamax for 2 months now and tolerating it very well.  I have tingling feet a few times a day but can cope with that fine.  I do have some cognitive "issues" - I find I am processing a few things rather strangely, but it's amusing rather than problematic.  I'm just a little slower on the uptake sometimes, and I need to proof read what I write a little more carefully.  My husband says I've had a bit of a personality change - I am in a bit of a happy bubble!

Weight loss is going great.  My GP suggested the 5:2, or fast diet, and I've lost 14lb really easily in the last 7 weeks on that.  Happy to explain more if anyone hasn't heard about it.

I should be back at Neuro in 3 months to see if there is any actual improvement in my papillodema, but I'm not experiencing any change in my obscurations.  But perhaps if it is a gradual improvement this would be hard for me to notice?

Great update!  Keep up the good work on the weight loss.  It may help (and is certainly better for overall health) but not always the answer.  Keep a close watch on your eyesight.  Have your vision checked every few months to see how your optic nerves are doing.

Hi there all.

Another quick update.  No more weight loss, crazy work schedule means I've lost a little momentum on that, but I haven't regained, so I'm still happy with where I'm at.

I've got a Neuro appointment on the 19th, so a couple of days ago I saw my optician to get some pictures of my optic discs, as the Neuro seems to go on what he can "remember" when checking progress.  He has no actual reference point of his own.

Looking at the actual pictures, we can see a tiny bit less blurring of the edges on one part of each disc, so a little more definition than previously.  So, a slight improvement.  This way, I have something to put on the desk and get the Neuro to explain to me, and tell me what the goal is with the meds, and over what timescale he would expect improvement.  Remember I have pictures of perfect looking discs from before all this started.  I feel like a forensic examiner!

But definitely heading in the right direction I feel.

Great report.  I hope that the Neuro agrees that you are on the right track and just keep doing what you have been doing.  Sometimes weight loss plateau's or just needs a brief break to get it going again, but being able to keep off what you have lost already is HUGE!  
Having a game plan sure does help.  Sounds like you have this whole thing under control!  You go girl!!!