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 Hello. It looks as though I have IIH, waiting for LP

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minniecat
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PostSubject: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 02, 2013 12:08 pm

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 thank you 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.
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 02, 2013 2:29 pm

Hello and welcome!

I am really interested in your symptoms as they seem to be similar to the way mine began. When I became symptomatic, crazy eye issues were the first clue. I have had the flashes and sparkles, especially when I look at a white wall or a clear blue sky. I feel like I am looking through a dirty windshield. One eye or the other will be blurry. Most of my symptoms began on the right side and then spread to the left. Like you, I did not have a headache as part of my initial symptoms.

It is interesting that you mention a period a few years ago where you had vertigo. I would like to hear more about that. I went through a similar period of about a year and a half where I had vertigo and was just generally feeling bad. It happened shortly after my divorce, and I always thought it was related to extreme stress and depression.

Did you have any headache events that predicated either this set of symptoms or the vertigo? Have you been under any unusual stress?

Sorry for all of the questions, but I am very interested in your journey to this point.

Once again, I am glad you are here; but, as always, I am sorry for the reason that brought you. Feel free to ask questions, vent, or just share your thoughts. This is a great forum, with some wonderful people!

Mark
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minniecat
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 02, 2013 6:26 pm

Hi Mark

Your first paragraph is me exactly. I have just got back from driving somewhere and I realise that the flashes are like when there are trees alongside the road you are on, and the sun is shining from behind them. Definitely see the dirty windshield. It seems as though it is between me and the wall? But my visual acuity is still OK. I can force a focus and pass the eye tests. Although with my left eye I have moved up a line on the eye test chart in the last few months.

On the vertigo subject, when I was ill 3 years ago, it was as though I was on a bouncy castle / airbed, on top of a boat in rocky water. So I could see objects - floor, furniture etc moving by about 18 inches, I couldn't move anywhere without holding on, vomited constantly for 36 hours. Felt the bed was moving etc. That gradually subsided until after about 6 weeks I would say things move up to 1 inch, but not all the time. Definitely every day though. I have lived with that since 2010. Initially when I was ill I saw crazy visual disturbance, then lost some motor use on the left, had a drooping left side to my mouth, problems with speech. I also had quite bad nystagmus in both eyes (they kept sending medical students to have a look as they didn't get many cases like it). They thought I had a stroke but MRI (after 5 days in hospital) showed no clot or bleed so they concluded I had had a blood vessel narrowing that had temporarily reduced blood flow. Today the neuro did a test of my vestibular system - marching on the spot with eyes closed, and I turned 90 degrees - so there is still a problem there. My personal theory (before thoughts of IIH) was that the narrowing and loss of blood flow had caused a little damage to the bit of my brain that controls all this stuff.

How it tends to affect me is that I stumble in the dark (no other visual clues to help keep me upright) and generally find walking uncomfortable in the sense I feel dizzy and it feels like I am overbalancing from side to side as I take each step. Made much worse if I can't see a horizon or there are low ceilings etc. Also can't keep my balance walking along a slope. If I turn too quickly or get up too quickly I wobble over.

I could go on...

I do find it strange that I have read many of my long lasting symptoms as being associated with IIH, but the neuro wanted to discount them.

I don't have any more headaches than your average person. I have suffered migraine in the past, with my cycle, but control that now with pizotifen so just have pain around my eye socket for a few days each month. Sometimes I can cope with that without any pain relief, sometimes I can't. Left eye, again!

No, I am not under any particular stress. I'm self employed, so there is always fear of not having any work, and that does stress me from time to time but other things are stable and I am well supported.

Wow, it's good to type!

Thanks for reading if you did.
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medmisfit
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 02, 2013 8:09 pm

I do wonder if your neurologist has something else in mind that would explain your symptoms. A lot of them sound very similar to IIH, but some very extreme. I know many neurological disorders have similar symptoms, so maybe he wants to keep looking and rule other things out first? Many of us have issues with balance and walking in the dark, looking through filters and films, etc..if nothing else, we can support you through the oddities that are neurological conditions and all of the frustrations that come with diagnosis/treatment. Good luck with LP and weight loss!!!

Please keep us posted on your progress!
Take care,
Julie
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minniecat
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 02, 2013 11:24 pm

Thanks Julie.

He did talk several times about thinking it was IIH, and that's been the main idea for a few months. The only other thing he's looking for at the moment is "cat scratch disease" but did say that was extremely unlikely. I've had a blood test for that today. I'd never heard of it.

There are no more tests planned apart from LP and possibly a different MRI.

But I'm definitely keeping an open mind.
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Wed Apr 03, 2013 11:59 pm

Hello Minninecat and welcome2

It just may take waiting for the lp to get the official diagnosis. Do write yourself a n ote to ask them what your opening pressure is. Also, ask them if they are going to draw off fluid. If they do, ask them your closing pressure. That way, it will give you a "base Line" so you can compare how you feel when you are at different pressures.

I hope they get you in soon to get that lp, and hopefully it will be done with xray guidance. Much less problematic that way.
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Thu Apr 04, 2013 7:01 am

Dear Minniecat;
I have never had papilledema, but I do have IIH. it is called IIHWOP; search for it on pubmed. my main symptom is "brain fog" which is much like feeling drunk; it feels like you are "on" something all the time. I think this is what happens when the pressure (ICP) just isn't as high, then when it gets higher you get the bad headaches and the pap. I also have had vertigo, and now that I am feeling better I don't have much anymore; it comes and goes with my ICP. so I completely disagree with your doc and I do think that you've had IIH for many years, it's just getting worse. docs don't tend to understand the more subtle symptoms we get, they just focus on the big things like vision. also, when my ICP is higher my speech is slower; then when my ICP comes down it speeds up, so I've had the vocal symptoms also. just speaking is a valsalva which can raise ICP, and when I don't feel good I prefer to just stay silent.

one thing the docs may not realize is that IIH is associated with hypercoagulability. this may be related to the stroke like symptoms that you had, regardless of the fact they didn't find anything on MRI. you should ask your doc to do a complete hypercoag workup on you, including anticardiolipin antibodies which have been seen in IIH.

good luck!
Deb


Last edited by Heidi on Thu Apr 04, 2013 4:48 pm; edited 1 time in total (Reason for editing : Medical advice omitted)
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minniecat
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Fri Apr 12, 2013 5:01 pm

Hi again.

I've been scheduled for my LP for Monday 15 April, which is much sooner than I was expecting, but that's great. Its less than 2 weeks since I saw the Neurologist; he led me to think it would be quite a wait.

I'm booked for 11am, will update on my pressures when I can.

Really busy and exciting weekend ahead, so lots to keep my mind off it.
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Fri Apr 12, 2013 6:46 pm

Good to hear you haven't had to wait too long for your LP. Have a great weekend and all the best for the 15th.
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minniecat
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Mon Apr 15, 2013 1:58 pm

So, here's the update. There is no update! 2 lovely young doctors tried 7 times to get the needle in the right place, but didn't manage it. For a while they couldn't even find bone, then they did, but couldn't get into the space between. They said my anatomy may be a little unusual. I was diagnosed with hypermobile spine when I was 20? Maybe that has something to do with it. They tried L3L4 and then L4L5. Can't try lower as I have a fusion at L5S1
Anyhow, I know this is not an uncommon story - thanks to this site, so I am not worried, just frustrated at another delay. Now over 5 months since swollen optic discs were spotted.
So I am waiting for an appointment for a guided LP. And in the meantime, feeling a little like a pincushion.
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Wylee
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Mon Apr 15, 2013 10:45 pm

OUCH!

Make sure you take good notes so that in the future, any time you need a lp they will set it up to do it with guidance in the first place.

I hope you don't have to wait too awfully long. Hang in there!
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minniecat
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 16, 2013 11:36 pm

Hi Wylee, thanks for your reply.

Yes it was a little ouch. My back is rather stiff at the moment from all the jabbing and there are a few bruises to tell the story.

But, good news, I have a guided LP booked for 25 April. I was offered this Thursday but couldn't do that, so they have tried to help me as best they can. 25th suits me fine.

Another thing I've decided to do is to get my lovely optician to take some more photos so I have something to compare. The Neuro said he thought my left eye was worse than the pics taken in December (which showed swelling). I decided this was something I could do for myself, without feeling that the medics were in control. So that's booked for Friday this week. I had a quick chat with my optician today and he was very supportive of the idea. I feel a little more empowered.

Oh, and I've lost 7lb in 2 weeks, so that's heading in the right direction.
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Wed Apr 17, 2013 1:58 am

woohoo
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minniecat
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Wed Apr 24, 2013 11:14 am

Guided LP is still on for tomorrow, so fingers crossed I get a result this time.

I saw my optician and he took new pictures, which show no changes to my optic discs since December. Still very fluffy. He said I am becoming more shortsighted (counter-intuitive given I am over 40), but my vision is still OK - in that I can force a focus and read the charts - although I experience a lot of visual problems still.

My BP has been much lower, following new medication, and consistently into acceptable levels for the last 6 weeks. I saw the consultant looking after me for that today and he is still doubtful that the high BP alone was the reason for the optic disc swelling. (This is something they are considering if my LP comes back normal). He still feels I have IIH.

I'll update after the LP tomorrow.
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Wed Apr 24, 2013 4:10 pm

good luck!
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medmisfit
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Wed Apr 24, 2013 4:28 pm

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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Wed Apr 24, 2013 5:45 pm

Good Luck for tomorrow. hug Hope it all goes well. Thumbs up
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Wed Apr 24, 2013 6:01 pm

Thanks all. Taking my teenage sons out to a comedy club tonight, so lots to take my mind of it.
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minniecat
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Thu Apr 25, 2013 8:09 pm

Hi all
It was a really good experience today. The radiologist got straight in first time, WITHOUT the scanner. Proves I think that experience counts. The young doctors won't learn though if they keep failing without a more senior doctor present to put them right.
Anyway, my opening pressure was 25 and he took me down to 21. He wouldn't comment on whether that confirms the diagnosis, but said it was higher than normal limits and therefore the diagnosis was "wandering towards IIH". I have to wait for the neurologist to write to me to confirm his thoughts on diagnosis. By my reckoning though I think I can now graduate to "I have IIH".
I am aware of the debate in the medical profession as to what constitutes a high level. Any views?
I've been a good girl and laid flat for a couple of hours. Good excuse to catch up on some TV and have tea brought to me! No headache, although my ears are hurting!
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Thu Apr 25, 2013 10:26 pm

I'm glad it went better today, and I agree about the young folks! ICP levels vary and are different for everyone. We all know it, but who knows how long it will take for the medical community to accept it! The important thing is whether your symptoms improve after CSF drained. I wish they had drained a little more fluid, but it sounds like you're feeling better..make sure to note all the changes. If the neurologist isn't convinced by the numbers, you'll have the changes to back you up!

Take it easy and enjoy your pampering!!!

Julie
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Fri Apr 26, 2013 7:22 am

They definitely should have drained more off. Got u down to 170 or so. If u didn't improve a lot that would be why. 250 is def. Abnormal. Don't let them tell u otherwise. Very upper end of borderline.
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minniecat
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Fri Apr 26, 2013 7:49 am

Thanks Julie and Sophiasmom.
I do wonder if the hospital have a protocol of how much to reduce by or whether its the whim of the doctor. This was a radiologist, and he was discussing with the nurse how many other patients he had to see after me, so maybe he was in a hurry? But I did think at the time that 21 is still above the normal high limit of 20.
So, symptoms, well this morning I kind of feel I am less blurry, but that's a really fluctuating symptom anyway. Balance is still the same (but they say I have a separate vestibular problem). Floaters and dirty windscreen effect are still present.
My main observable symptom is my swollen optic discs. I have no idea how quickly these can revert to normal. Could it be quickly? If so, they have no plan to look at them, so I wonder if they could improve for a bit, unnoticed, and then deteriorate again if my pressure goes back up? So we wouldn't know if the reduction in pressure via LP had an effect.
There was no suggestion that I would go back to ophthalmology, so if that's not mentioned in the Neuro's letter to me, I will raise it.
I don't have the headaches all you poor lot have, so relief from those is not an indicator for me.
In other news, the diuretic prescribed by the medical consultant for my BP, while working well, has given me high levels of uric acid, and incredibly aching muscles when I attempt to do anything strenuous, like drying my hair and haning up washing! So I am at risk of developing gout on top of all this! I've to reduce protein and increase vitamin C.
Happy Friday everyone.
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Sun Apr 28, 2013 10:43 pm

Well silly me thinking I could get through the LP unscathed. Since I last wrote I've been plagued by a horrible headache and nausea unless lying down. So I've been lying down when I can. And had a lot of caffeine fluids. The hospital have given me no guidance on how long I should keep going if it doesn't ease. But I think most advice I am reading online says normal for a few days? In fact there was no real mention of potential headache, or any information on aftercare, so a good thing that I'd read about it on here. Boy it hurts when you cough, doesn't it!
At least I'm awake enough, from the cola, to stay up late tonight and finish a piece of work I've promised a client for tomorrow morning. Difficult to do lying down though!
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Mon Apr 29, 2013 1:11 am

Sorry to hear you are suffering. I had the same thing three days after my LP and it persisted for about 6 days despite caffeine etc and the doctors thought that it was a spinal fluid leak due to the lumbar puncture (It wasn't in my case as it turns out) but commonly it is. So I went into hospital and they did a blood patch where they injected some of my blood into my spine close to where the LP site was. If there is a leak this should fix it by sealing up the leak with clots. I still have my sympoms 6 weeks later and the blood only made my pressure worse but I am told I am unusual and it is not generally what happens and I am off for stent surgery next week. If your doctors suggest a blood pacth if your symptoms persist then fingers crossed it will fix things for you! Hope you feel much better soon. Diane
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Mon Apr 29, 2013 7:50 pm

I have to say that I'm not surprised you didn't notice many improvements after your LP. They usually at least take CSF down to mid-teens. I'm also sorry to hear you're having so many side effects w/ meds..have you talked to doctor about trying a different one? There are options, so don't feel like you have to keep struggling w/ the same rotten medication.

It does sound like you've been having low pressure headaches, so make sure you're keeping your doctor informed. People generally have low pressure symptoms because they remove so much fluid so quickly. Since they didn't take much fluid, I would be concerned about a leak. They will need to do a blood patch if symptoms don't improve or you notice any leaking at puncture site. It's not as unpleasant as LP and you'll feel a lot better, if that's the reason for your headaches.

Hang in there, and definitely keep us posted!
Julie
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 30, 2013 12:58 pm

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.
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 30, 2013 4:18 pm

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
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 30, 2013 4:28 pm

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. Smile
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Tue Apr 30, 2013 4:39 pm

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.
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PostSubject: Re: Hello. It looks as though I have IIH, waiting for LP   Sat May 25, 2013 2:47 pm

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!
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