Tinnitis... Friday, 5:16 PM
Dairy might be a big part of the problem???  It is in so many products that it is very important to read labels... Peace ,  Spencer  Breathe Well  

My tinnitus has a definate and known and cause .. .. a lightning strike during July'95. I was also left with a chemically controlled arrythmia amongst other problems.

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Gosh.. yes, I too did not get a tracker about this.  It was not until I got the tracker of your post Rain, did I know of the entry from Suzi.  I guess it was something to do with all the Care2 glitches we are experiencing.

Suzi.. I do not suffer with BIH, but I do have very intrusive tinnatus and get vision problems, so I can definately say I hope that you will soon be experiencing remission.

Rain...I so pleased that things are looking up for you.  You are doing a splendid service by running this group.

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Suzi - no idea how i missed your last post as I have all the messages tracked and sent directly to my email...must have gotten past the system.

Hope things are going well for you.  There is ALWAYS hope.  I fully understand what you mean about Lumbar Punctures - my worst nightmare!  And yes it definately helps to have someone that really knows how to do them doing them, but at the hospital I attend the team swap around every 8 weeks so not only do you not have the consistency of the same person doing it every time but often it has been someone that is just learning to do it!!  I'm so glad I'm not having LP's at the moment as I hate being used as a guinea pig for a newbie although I appreciate we all have to learn!   Arrggghhh doesn't it make you mad?

I went back to the Eye and Ear Hospital a couple of weeks ago and everything is still fine.  No changes to my eyesight, no symptoms at present and still off the Diamox!  So I guess I'm in remission officially although none of the Dr's have said so; but that doesn't stop me saying so, lol!  I FEEL GOOD!!!!

I've just started back to work on a rehabillitation type work scheme.  This means that I'm getting work experience rather than having a job; takes the stress factor out of it, and I'm getting paid an extra allowance which is good.  I'm finding it a bit of a struggle though, so tiring, but I guess that's because I haven't worked for over a year, it will take time.

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Wednesday 1st February 2006

Went back to the Eye and Ear Hospital, Dublin, for my next review.

Firstly I had to have the goldman field test which I passed successfully!

I then had the standard fields vision test - like you have when you go to get your eyes tested at the opticians.  Again that was fine, but no reason for it not to be as my eyesight hasn't changed for the worst since being diagnosed with BIH.

I then had my eyes examined by Professor Cassidys regsitrar/colleague - perfect!  No sign of papilloedema (swollen optics) in either eye. 

 Still having no symptoms of headaches, vomiting, visual disturbances, tinnitus etc as I was at one time not so long ago. 

So the good news is that it looks like the BIH has definately gone into remission!  I'm so pleased I cannot begin to tell you how I feel.

I'm now coming off my medication - diamox - for good!  I'm so hopeful that this is the end of my BIH.

However that doesn't mean I'm going to turn my back on the disease, this group or anyone that needs me....this last year has been one helluva journey for me and I've learnt a lot not only about BIH but about me and about life.

I hope my story has given you hope that BIH need not be the end of the world.  I'm living proof of that.

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Thursday 15th December 2005

All things are still good for me I'm delighted to say.  My medication has been cut right down (although not off the medication as yet, I hope I will be soon) from 500mg Diamox a day to 125mg Diamox a day.  I'm still relatively headache free.  No vomiting.  No visual disturbances.  No problems with using the brain and remembering things.  AND NO MORE LUMBAR PUNCTURES!!!! 

I have my next check up with the Eye & Ear Hospital in January, will see what happens then.

Since researching BIH I have come across a lot of very sad stories.  I am here to say that it needn't turn out so bad, you can get through this.

Know that I am always here to help any of you that are suffering with BIH or have family/friends suffering with it.  Send me a personal message and I'll link up with you via yahoo messenger or msn messenger.

Take care one and all.

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I apologise for not having posted much lately on "my Story"...but you know what they say, "no news is good news"!

Well I last went for a lumbar puncture back in August and 3 drs couldn't get the needle into my back to get as far as even removing the fluid and measuring the pressure!  Well, in a nutshell, I went through hell...was really painful and of course the more they tried the more the muscles in my back started swelling making it more awkward.  You get the idea I'm sure...  In the end they didn't give me a lumbar puncture - which to be honest I was so glad about because the LPs are a nightmare and very painful!  We discussed briefly about what happens next...I suggested a shunt to the Registrar although that wasn't really what I wanted...and he said I could discuss that with the Consultant and an appointment would be made.

Saw the Consultant Neurologist who wanted to know what the Specialist at the Eye and Ear Hospital had to report back before he made his mind up about my next step.

Saw the Specialist at the Eye and Ear Hospital and found out that my papilloedema had disappeared and my peripheral vision had righted itself!  WOOOOHOOOOO!!!!!  This meant that I no longer had to have any more LPs for the foreseeable future, and my medication was halved from 250mg Diamox twice a day to 250mg Diamox once a day.

My follow up appointment at the Eye and Ear Hospital just recently revealed that all is still good so my medication has been reduced further to just 125mg Diamox once daily!

I'm feeling so much better in myself since all of this has happened.  I'm symptom free at the moment (and hope to continue this way) and have got energy back (although I'm still not where I was at before BIH struck) and am living again!  I can think, I can go for small walks and I can drive again!  You have no idea how good I feel right now.

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Monday 27th June 2005

Time for yet another lumbar puncture, my third.  Again made my way to Tallaght Hospital in Dublin early in the morning.

This time round it wasn't such a good experience.  I tend to relax myself as much as possible before they insert the needle by reciting a mantra over and over in my head, which normally works ok.  Anyway to cut a long story short...they hit a nerve!!!  And despite being so relaxed I swear I must have jumped off the bed or levitated at least!!  It HURT!!  I could feel the pain in my left buttock and hip and all the way down my leg to my ankle.  It was very painful and unfortunately they couldn't stop, they had to keep going with the procedure.  I couldn't remember the last time I had experienced such pain, tears of pain filled my eyes.  Not nice at all.

Soon enough it was over.  Well not soon enough really but you know what I mean.  The pressure had been measured at 28, so down 2 from last time, 3 from my original pressure reading.  I guess that means it's working, albeit very slowly.

A friend had given me some advice from a medical doctor friend of hers; he (the medical dr) didn't recommend lumbar punctures as they can cause problems with your back and you are at the risk of infection for meningitis amongst others, and suggested that having a shunt put in was the way to go.  Not sure that I like the idea of a shunt but I need to find out more information before I make a decision like that.  But after what I had gone through today I didn't want to experieince anything like that again!

So I asked my Dr what her plans were for me long term regarding lumbar punctures, shunts etc.  Her response was that I would need to discuss this with my consultant (fair enough i guess) although the recommended course of action was to continue with the lumbar punctures until the pressure came down to a manageable level and stayed there (although how long this would take to happen, if it did happen at all, is anyones guess).  So basically my answer was I am to continue having my monthly lumbar punctures for the foreseeable future; which would be months and possibly years?!?!

As per normal procedure I spent the next 4 hours laying flat on my back and not moving, before I could start to sit up again.  That was fine.  It's never comfortable but you make the best out of a bad situation.

My problems started when I tried to get up, I was just so stiff and in sooo much pain I was crying.  Managed to get some painkillers before I left hospital but the journey home by car was very painful on the bumpy roads.

I always have to rest in bed for a minimum of 24 hrs following a lumbar puncture but this time because of the pain ended up staying in bed for 3 days.  It took the best part of the week to recover.  Although even now it's still not totally right.  Let's hope my next one is better.

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Wednesday 18th May 2005

Was supposed to go back into hospital for my 2nd lumbar puncture but rang to cancel the day before as I had an awful cold and cough; didn't think I could keep lie still with a cough!  The drs agreed so my lumbar puncture was cancelled; was told that they would ring me with another date asap.

Wednesday 25th May 2005

Had another appointment at the Eye and Ear Hospital.  They performed all the routine tests and the field vision test known as the "Goldman Test".  Apparantly the previous time I had been to the Eye and Ear Hospital the Goldman Test had showed a deterioration in my field vision, but this time big improvements were seen...so that was good to hear!

However, because I was still experiencing "flashing" in my eyes I was told that I was still not allowed to drive.  That will be reviewed at my next appointment in July.

Thursday 26th May 2005

Following a last minute phone call the day before, I turned up at Tallaght Hospital for my 2nd lumbar puncture at 9.30am.

I had the same SHO as last time administering the lumbar puncture so was a little dubious as to how it would all go (she couldn't get it in the right spot last time and kept hitting the nerve which was quite painful at times).  Thankfully this time she seemed to do it properly 1st time.  My pressure was still high at 30 but slightly less than it had been the previous time when it was 31.  It was taken down to 18.  And before I knew it I was back up on the ward.

Unfortunately this time I was on my own; my mother was back in England and my partner was at work.  Knowing that I had to drink plenty of water and also knowing that the nurses wouldn't have time to come and give me a drink every 10 minutes or so I had come prepared; I had my sports top mineral water bottles with me.   But.....they didn't work.  I sucessfully drank some water whilst lying down flat (had to lie flat for 4 hours), it was when I removed it from my mouth that the problems started....I nearly drowned myself...the water clogged up my nostrils and I choked!   Well, I tried!  And failed...  So I had to rely on the nurses helping me drink with a straw, but as I thought, that didn't happen very often as they were too busy.

After 4 hours I was sat up slowly and then was discharged when my partner came to collect me.

As last time I had to lie down for an additional 24 hours afterwards and then take things easy for a day or two.  Again I survived ok...didn't get those horride low pressure headaches that I have read so much about!  Again the puncture site was a little sore for some days afterwards, but no real ill effects.

The lumbar puncture was a success again.  Been feeling a lot better since....only a few headaches, no "flashing" in my eyes but a new side effect - a rushing noise in my left ear, although not constantly thank goodness.

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Thursday 21st April 2005

Was dropped off at Tallaght Hospital (with my mother) at 8.30am and made my way to the Day Ward. 

They had problems finding my notes (!) so consequently I didn't go for the actual lumbar puncture until just after 10 am.

I was eventually taken into a small operating theatre where I had to lie on my side in the foetus position to enable them to locate the exact position on my spine in which to inject the local anaesthetic and then the needle that would drain my cerebrospinal fluid away.

Well it took ages.  The Dr in charge kept massaging my back - hard - and it felt really sore.  I just kept my eyes closed and tried to meditate to block out what was going on. 

Eventually she inserted a needle to withdraw the CS Fluid, but she didn't get it in the right place!  She kept hitting nerves and I could feel the pain shooting down towards my leg.  Every time she tried to insert the needle into the spine she hit a nerve!  This happened countless times.  In the end she called for a more experience Dr who did it first time.  He then left the room and the more junior Dr took over.

The draining of the CS Fluid took a long time.  My pressure reading was 31, it should be a maximum of 20.  So yes I definately have BIH.  They kept draining the fluid until the pressure dropped to 14, then they stopped.  Applied a dressing and returned me to the day ward.

My mum was pleased to see me because she was getting worried that what should normally be a 20 minute procedure had taken over an hour and a half!

Once back in the day ward the fun started.  I had to lie flat on my back and completely still without moving my head for the next 4 hours (in some hospitals it can be as long as 8 hours) and had to drink plenty of fluids.

I managed to keep flat and still for what turned out to be about 4 1/2 hours in the end.  I also was well hydrated because my mother kept feeding me water through a straw.

Thankfully because I did everything right I didn't suffer from the low pressure headaches that I have heard are extremely common and extremely painful, often resulting in people being in bed for upto a week afterwards.  I'm very grateful for that.

My back was quite sore and painful for a few days afterwards but I guess that was to be expected.

All in all a positive experience.  I felt so good afterwards, almost back to normal.  My daily headaches had disappeared although I was still getting flashing in my eyes.

And now, today, 3rd May, almost 2 weeks on I still feel fairly good.

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Tuesday 19th April 2005

Had my re-scheduled urgent appointment with the neurology team at Tallaght Hospital.  As always lots of questioning regarding how I'd been feeling, ie headaches, visual disturbances, exhaustion, noises in the ears etc.  More looking into my eyes and checking my peripheral field vision.  Also had (don't know the technical term for this...) the rubber hammer on my reflexes - as far as I know I responded ok there.

Because I was having a headache all day every day (although not always severe headaches) and my peripheral field vision had deteriorated a little the decision was made to push ahead for my lumbar puncture.

I had to hang around hospital all morning as the neurology team were chasing around after the day ward to see if they had a bed for me so that I could have the lumbar puncture there and then!  To be honest I wanted the lumbar puncture but at the same time was extremely nervous as I have read and heard about so many stories of the low pressure headaches that follow lumbar punctures, often resulting in being restricted to bed for upto a week because the effects were so bad!!!

In the end they couldn't get a bed for me so told me that I was having a lumbar puncture as a matter of urgency now - within the next two to three weeks.

No further discussion was made regarding increasing my medication - I wasn't going to bring it up because I don't really want to increase my medication and felt having a lumbar puncture would probably be more effective.

am Wednesday 20th April 2005

Back to Tallaght Hospital again today.  This time just for a follow up appointment with cardiology following the damage caused to my heart and brain following extreme high blood pressure which had been as a result from my last 2 day headache/sickness attack on 14th/15th March.

Good news!  The cardiology team were more than satisfied that my blood pressure was now normal (I'm 99% positive that it was only during my last attack and a few days afterwards that I had high blood pressure, definately didn't have it beforehand and haven't had it since I've been out of hospital) and have released me from their care.  I'm just to be monitored by my GP and to continue with the medication for now.

pm Wednesday 20th April 2005

Had a phone call from Tallaght Hospital requesting that I come in first thing in the morning for my lumbar puncture!

Thankfully not a problem this time.  My partner would be able to drop me off at the hospital first thing in the morning and, luckily, my mother was arriving from England tonight so would be able to come to hospital with me.  Not knowing exactly what a lumbar puncture would entail I was extremely nervous and glad for the company.

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Didn't go to Tallaght hospital for my urgent appointment on Tuesday 12th April in the end as I had no one available to take me at short notice.

Unfortunately I'm not allowed to drive at the moment because of the flashing in my eyes so I have to rely on my partner and a friend for lifts; and at such short notice they were unable to take time off work or rearrange schedules.

So the appointment was re-made for the following Tuesday, 19th April.

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Don't blame you for not looking forward to that, they are the most uncomfortable things to go through, not too painful if its an experienced person doing them but if like me you had the SHO having three attempts before the registrar came in and took over, you may experience some pain, I had back pain for a few days and a headache immediately after the LP was done - but i think that was more to do with the fact that they had me up right away and down to the eye clinic - when you are supposed to lie flat for 4 hours afterwards.

Good luck with them rain

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Back to the Eye and Ear Hospital in Dublin to see the consultant. 

Got there at 1.15pm for a 2pm appointment (way too early but if someone is kind enough to give you a lift you can't really say anything can you?).

Was in and out of the waiting room like a yo-yo at times; had a reading test, then back in for a chat, then back in for a peripheral field vision test, then back in to get my blood pressure checked, then back in for drops in my eyes to dilate the pupils, then back in to get my eyes looked at, then back in to have a chat with the consultants side-kick!  Eventually getting away at 5.30pm....no wonder I was exhausted!!

Nothing much was said after all that either.  Because I'm still getting the headaches they wanted to double my dosage of Diamox and give me Potassium tablets.  But when I was in hospital recently they didn't want me to have Potassium tablets because they could interact with one of the other tablets given to me by the hospital for my heart/high blood pressure.  So I told him that, and that confused him big time! Lol!  So any medication changes have been put on halt until he has discussed things with the other hospital.  So I await their decision.  He did say that it was vital now though for me to commence Lumbar Punctures so he'll be chasing that up - still not looking forward to that!

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Been having a bad week with the headaches but not too bad today.  Just getting a little down with having a bad headache every day being the norm...still off to see the Consultant at the Eye and Ear Hospital on Wednesday, so will see where we go from there.

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Rain I hope you're doing better this week.

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Tuesday 15th March 2005

Experienced the nasty headache which just seemed to get worse - had to go to bed after lunch.  Ended up spending most of the day in bed and having an early night - found it very hard to sleep as the headache was so bad.

Wednesday 16th March 2005

Headache was even worse.  Had had a bad night because the pains in my head were so bad.  Managed a slice of toast for breakfast; after that it was all downhill. 

By lunchtime the headache had increased and was feeling extremely nauseus; each time I moved to get out of bed I was violently sick - couldn't even keep sips of water down.

By early evening my partner Karl was so worried that he decided to take me to Accident and Emergency at Tallagh Hospital, Dublin.

By the time I got seen by a nurse my BP had gone through the roof, I had a high temperature, was feverish and badly dehydrated.  I was immediately put on a drip to ensure that I was receiving some fluids intravenously.

The hospital team decided to keep me in so I spent the night on a trolley in Accident and Emergency.

Thursday 17th March 2005

Was finally given a bed in a ward.  Blood pressure was still high although not dangerously so as it was when I was admitted the night before.  No more vomiting and the headache although still there was an awful lot better.

Thursday 17th - Tuesday 22nd March 2005

Over this period of time I underwent numerous tests.  I had a chest x-ray, ecg, a CAT Scan of the brain, renal ultrasound scan, MRI brain scan, heart ultrasound scan, various blood tests and urine tests.  They pretty much did everything, lol.

Urine tests showed that my potassium levels were very low so I was briefly supplemented with potassium tablets.  Low potassium levels can result from taking Diamox medication.

Chest x-ray, ecg, CAT scan, renal ultrasound scan were all fine.

The heart ultrasound scan showed some wear and tear on the heart, due to, according to the medical staff, very high blood pressure over a long period of time.  I haven't had high blood pressure before this though and had had my BP taken twice within the past fortnight and those readings were ok.  So seems very strange to me.

The MRI brain scan showed a 5mm area which had been damaged due to stress, again the medical staff attributed that to high blood pressure over a long period of time.

Apparantly though, however awful it sounds, both the small problem with the heart and brain are not of concern and will soon be righted with rest and medication etc.  A BIG sigh of relief!

Wednesday 23rd March 2005

Was released from hospital today.  What a relief!  Was so glad to go home.  Still waiting on some blood tests and have a cocktail of drugs to take now.

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guess I missed that bit out...

I had been experiencing pain and stiffness in the back of the head/neck on and off for some time...I just put it down to stress.

Certainly for the last year I've been back and forth to my GPs with bad headaches and pains around the eyeball sockets.  I've suffered with migraines in the past and although this headache pain really was excrutiating I guess I thought it must be another form of migraine.  My GP diagnosed sinisitus time and time again...never had so many prescriptions for antibiotics (don't really believe in antibiotics but was so desperate for relief from the pain I took them hoping).

Around November time I started experiencing what I can only describe as twinkling in my eyes...closest thing to it is this...you know what it's like when you're in the car and the sunlight catches your eye right in the corner...was pretty much like that.  Then just recently it has been getting worse with blurring in my right eye.  It's very disturbing.  I did go to my GP about it and he just said that I needed to get my eyes checked in case my glasses needed changing.

I've also been feeling very exhausted and not sleeping well for quite a while - can't really put a time frame on that.

Finally, welcome to the group Luciano and thank you for your words of comfort.

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So then, Rain, were there any symptoms of sorts at all, prior to Feb. 22?

My positive vibes to you in this time when you can use some...! 

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Sounds like you had a nasty accident...I do hope that you are able to manage your pain.  Sending love and healing to you also dear Patti.

Have taken on board what you say about anger....and yes you are completely right.  Anger does no good.  I am calm now. 

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It means a lot to me.

I'm off to see my GP tomorrow so hopefully we can get somewhere a little bit faster.

It's not often I ask for healing for myself, but in this instance I do.  So any reiki you send is most gratefully received.

 also for joining BIH.

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Tues 22 Feb 2005

Routine eye test at my opticians.  Good news was that my eye sight hadn't changed/deteriorated in anyway.  Bad news was that my Optician noticed inflammed optic nerves in both eyes and sent me with an urgent note to the Ear and Eye Hosptial in Dublin.

Arrived at casualty at the Ear and Eye Hospital and had numerous eye tests, lights shone in my eyes and drops to enlarge the pupils and numb the sensations.  Loads of questions asked about my health etc.  An appointment was made for me to attend the consultant neurologists appointment the following day.

Wed 23 Feb 2005

Arrived at the Ear and Eye Hosptial in Dublin again.  Again was submitted to various eye and vision tests by students, nurses and eventually the consultant neurologist herself who diagnosed me with BIH and explained what it was.  I was then told that a MRI scan would be arranged (to rule out the possibility of a brain tumour) followed by regular lumbar punctures, and if the lumbar punctures were not effective then the possibility of a shunt was discussed briefly.  I was also given a prescription for 250mg Diamox twice daily.

Tues 1 March 2005

Saw my GP who arranged for me to take some time off work on "sick leave".  I think he was a bit shocked at my diagnosis as he had diagnosed me with sinusitis every time I went complaining about my symptoms.

Tues 8 March 2005

Went to see a different consultant at Tallaght Hospital who again checked my eyes etc.  Then arrangements were made for a MRI scan to be booked, and aso a bed on the day ward for when I have my first Lumbar Puncture.

Mon 14 March 2005

Rang Tallaght Hospital checking to see when my MRI scan was booked for as I had not heard anything through the post.  Was told that although my consultant had marked my file as "Urgent" and promised that I would get my MRI scan within a month, the first appointment available would be Tues 14 July!!!!!! 

Not good enough!!! 

Understandably I am feeling angry  and frustrated   today.   But I'm working on it to get my appointment through earlier than that, can't wait 4 months!

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