Do any other members have BIH/PTC?

Please speak up if you do.  I would like to be able to share experiences and all the ups and downs etc...

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Hi there, I have for the past few months been getting daily headaches which are extremely painful at forst  I thought they were just tension headaches but when I had them for about 3 weeks constantly I decided to go to my GP for some advice.  I was referred to a medical clinic and then for a CT Scan which was clear, so I was referred to a neurologist who thought she saw some swelling in the nerves behind my eye and suggested it might be Binign Intercranial Hypertension - I have never heard of this before so have been trying to find out as much about it as possible since then - I had a lumbar puncture last week (not the most enjoyable experience I have ever had) which showed the pressure to be elevated.  I am now waiting on an appointment for an MRI and another appointment with the neurologist for an outcome on the lumbar puncture results.

It is good to have found a site like this to give more more information.

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Hi all and thabks to rain for sending me an invite to meet you all! This is a fantastic facility, it's so good to meet others who are going through or have been through the same thing. Rain, I hope you're keeping really well, I'll be thinking of you on the 18th.

Talk soon,

Queen M

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hi there

I thought everything was ok, but the last couple of months headaches and stars have come back, eventually went to gp who said it has come back, so waiting to hear from consultant that was a month ago and still waiting, i was informed that it could be six months before i can see him, having good days , only a dull ache but mostly bad days where it worse when you move but when you are a single parent you just have to get on with it.

thanks for your interesting accounts of what you have gone through

keep up the good work

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Hi

Thanks Rain for e-mailing me this site.  I was diagonosed 3 1/2 years ago although they reckon I have had the condition for a lot longer.  Recently had a shunt and am doing really well at the moment.

Jo

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Hi Jo!  Good to meet you on the board!

Glad you accepted my invitation to join.  BIH is such a relatively unknown disease that it's so good to talk with others that have it....you can go mad otherwise (well that's my excuse...lol).

Trying to encourage members to use a minimum font size of 3 when posting as we have some group members that have difficulty with their vision.

Would be great if you'd take the time sometime to share with us some of your first hand experiences of BIH.

PS.  Hope you're enjoying finding your way around Care2!

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Hi Tracey!  Please don't suffer in silence....shout out your problems and your pain from the roof tops...insist that your dr listens to you and gives you the right help and medication.  Or change your dr!

It really annoys me how the medical profession (with a few exceptions) treat this disease as headaches - if ever that was a term to undersell an illness that has to be it!  Headaches - head pains more like!!!

Just a q? How do you know you contracted it (if that's the right word to use) by having two pregnancies close together?  Curious as I've never heard of this.

Please hang on in there and get the help you need and deserve.  I'm here for you if you need a friend.

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I was just last week diagnosed with BIH. I'm a ninteen year old female college student. I was attending UC Santa Cruz. I had jsut moved out to attend that school and in the first week I started getting this bad headache. I waited a week with this headache, but when I got double vision I knew I had to go to the hospital. I was crazy finished that day of school seeing double and dying in pain. I went to the ER and the doc told me it was a migraine and sent me home. I came back that next day dying in pain, and luckily they had a neurologist look at me. I had a ct scan, then a mri, and the doc finally thought that it might be bih. He did a spinal tap and gave me a diagnosis Sep. 28. I'm scared and a little nervous. This is a scary disorder. I had to drop out of UCSC because I missed class while i was in the hospital. I want to know if most people have a lot of problems with this or if it is managable for some. I hear a lot of really sad stories and hope there are some happy ones. Thanks everyone for the hopeful words.

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Firstly I'd like to welcome you to the group Emma!

So sorry to hear that you have just been diagnosed with BIH.  I've been offline for a while as I've moved country so I apologise that I've not replied to your post sooner.

How are you doing now?  Have you been put on medication?  Are you having LPs?

I hope a lot of your questions have been answered and you are beginning to manage your BIH.  Believe me it can get better.  I was diagnosed in Feb 2005 and have been off medication since Jan 2006 and off LPs since Sept 2005.  I'm now in what I call remission.  I hope to stay this way but know that it's always one day at a time.  But it is important to know that it's not all doom and gloom.

I hope this helps somewhat.

Hope you're in good health today.

Namaste

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Joyce I got the tinnitus too at one stage...there are so many different symptoms of BIH...almost a whole dictionary I think!

What pressure readings are you getting with your lumbar punctures?

I've not personally had a shunt but many do.  I've heard different stories regarding shunts...it's a really individual thing...and there are I think a couple of different types of shunts too.  Ask your consultant to explain the different types to you...get as much knowledge and information that you can so you can make an informed decision.

Finally, thank goodness you have a wonderful consultant!  I was diagnosed when I was still living in Ireland and my consultant was pretty.....*hit!  I wonder if you're seeing the same one that I saw back in November.....Dr Hilton-Jones.... if so then I have to agree, he's fantastic!  It's not uncommon for GPs (and even consultants) to know next to nothing about BIH as its such a rare disease; so have patience with your GP and feel blessed for having such a wonderful consultant!

Take care of yourself...

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Hi there,

Just registered with this site a few moments ago .Can anyone else confirm that stressfull situations aggreviate their symptons ?

I was diagnosed with BIH, some 10 years ago. Scary time back then as i had just lost my father in law to a Brain Tumour, so you can imagine the thoughts running through my head. Had severe headaches for several weeks and nothing would clear them, saw the doctors, who after numerous tests said they couldnt find anything wrong, So went to my optician, who was excellent. The care he gave was amazing, he drove me home and within an hr i was admitted to hospital.2 weeks later I had an MRI scan, and which point they confirmed Shadows had been seen around the brain , to each side. BIH was confirmed diagnosis. Every 6 mths was  seen in hospital,taken off all contraceptive and lost weight, still with no change. when i woke one morning to find I had lost some vision, and with what vision i did have left was blurred, I was treated with Diamox. After 18mths, i was told i could just see my optician on a regular basis as my optic nerves had returned more or less flat and the pressures were down. After 2 years of headache free times, it has returned,both  sides affected. confirmed by my optician, just waiting now to be seen again by the hospital.  All I can say to those experiencing this for  a short while, hang in there, it does get easier if treatment is regular. Keep on top of all your checks and best wishes to you all.

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Hi I am Sarah, am 27 and was diagnosed with BIH on 15th July 2006. I have been a member of this group for a few months but thought it was time to tell my story.  Its not as horrific as some of the stories I have read so in that respect I am quite grateful.

In June/July I had experienced a couple of dizzy spells and some blurred vision.  I thought that when I couldn't read the teletext with my glasses on that I needed some new specs so made an appointment with my optician.

The optician was great.  She suspected straight away that it wasn't a problem with my sight at all but with my brain and immediately made arrangements for me to be admitted to Hallamshire Hopsital which is actually the Sheffield Teaching Hospital. 

The treatment I received was fantastic considering it was a Saturday.  The hospital were expecting me and within one hour of arriving I had my first CT scan.  The doctors explained all of the possibilities and the likelihood that it was BIH and not a tumor. 

After receiving confirmation that the CT Scan was clear I was told I would be staying at least until Monday for my MRI Scan.  In the meantime I would have my first lumbar puncture.  Opening pressure was 36.(Not much compared to others I now know)

Now this didn't go too well.  Had to have four needles before they were able to draw the fluid. Each time the needle was longer and thicker. Unfortunately it was 10pm at night before they finished this after which it was time to go to bed.  They explained the importance of drinking plenty of water and lying completely flat for the next few hours.

I drank all of the water supplied and laid completely flat.  After about four hours however I developed a horrendous low pressure headache.  I had this for the next six days.  The only way in which I can describe the feeling is that every time I sat up or tried to walk about I thought my head was going to explode.  The pain was so bad that it made me violently throw up.  After lying down again though it settled again so I dreaded each moment that I had to sit up.

After a week of hospitalisation and numerous consultants and students asking me questions and assessing me I was allowed home.  I couldn't believe how much strength I had lost by just lying on my back for a week.

When I was asked how I felt it was difficult to describe.  I didn't look ill but I certainly didn't feel right, the whooshing sensation in my head everytime I stood up and the feeling that something is just pushing your on your head and it feels like your eyes are going to bulge out.  Explain that to someone who doesn't know or understand and you just get a strange look as if to say 'she's wierd'!

Anyway after 4 weeks I went back to work and I am able to cope with the side effects.

I have so far lost 1 and half stone which is more than the 5% recommended by the doctors and have been taken off my contraceptive pill.  Unfortunately my pressure readings are higher than ever so the docs are a little disappointed. The last one was 44.  I am sure they were convinced that it was my weight causing the problems.

I now attend the hospital every three months for lumbar punctures and eye checks.  I am also signed up to be involved in various studies investigating the disease. Hopefully taking part in these will help someone in the future.

My next step is to go on the drugs trial.  Not quite sure which ones yet but the doctors are going to review the situation in July.  My next LP is in three weeks.  Not looking forward to it but its essential they tell me.

I can only say that thanks to this website I have read reassurances that life does go on and there is hope that it may one day be able to be successfully treated.

It makes a difference just being able to talk to people who understand what I am going through.

Thank you xx

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Hi there!I have already told my story to everyone and would like to praise everyone for their help and support. I just have a new question and I help someone may be able to help. After being diagnosed with BIH in 2003 I lost quite alot of weight but recently started getting worse and could hardly move for about 4 months and so my new exercise regime went out the window. I got serverly depressed as I couldn't do anything for myself and was alone (I couldn't manage to focus on a computer long enough to pop back here) anyway not being able to do anything with my children or even go christmas shopping for their presents made my depression worsen. I have had 2 more LP's since christmas and am much better now but my healthy eating and exercise plan isn't working anymore an I have gained nearly 3stone by comfort eating during that time. I have pulled myself together and would be very grateful for anytips on successful dieting for people with BIH as I have found alot of diets irritate my migraines. Also I am curious to know if BIH has caused any sort of depression for anyone else? Thanks, just writing this stuff down has made me feel loads better.

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Hi there, not been here for a while, been far too busy trying to cope with headaches, uni work and making sure I attend placements (which I haven't for last 5 weeks)  So sorry to read about some of your experiences, and I  know compared to some of you, my experiences are mild, however debilitating nonetheless.

Well I had my latest outpatient appointment with my neurologist, who decided rather than repeat another LP (phew) he would try me on Diamox, so this started on Tuesday, and I feel like I am peeing for Britain!!!

Rain, I know you were on this at a point, and I am so happy for you to read that you have recovered, that is excellent news!!!  How long does the diamox take to kick in?  I am on 250mg once dailly at 6pm, so of course I have been awake overnight needing to whizz also lol.

I have my fingers crossed, get a result from this so I don't need to have a repeat lumbar puncture.

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Hi there,

This is just a general query....

I have BIH and nearly every time I stand up I have the sensation of my brain swelling, my vision blurrs and my ears pop.  After approx 40-60secs later it fades away. 

Now I haven't been on a aeroplane for approx 5 years which was also previous to me being diagnosed with BIH.

Does anyone know whether the pressure change in the aircraft will affect the pressure in my head?  Has it happened to you?

Any advice would be helpful.  Thanks

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Hiya Babby.

When it was confirmed that I had BIH I was put onto Diamox (can't recall the dosage) and also had Lumbar Punctures approx every month.  I was in Ireland at the time. 

But I know what you mean....different places treat us very differently.

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To diagnose IH, you have to have an MRI/MRV to rule out lesions or tumors etc, you should also see an opthalmologist, who will look at the optic nerve to determine if there is any swelling (papilledma). I would contact your primary physician to let them know what symptoms that you are experiencing. The next step is to see a neurologist, and they would typically order a lumbar puncture.  They would be checking for increase CSF pressure, but they also check the fluids for other abnormalities.

As far as the symptoms, the main ones are headache, usually worse in the middle of the night, or when bending over, that doesn't respond to pain meds, dimming or graying out of vision, ringing or whooshing sounds in your ears, neck and/or shoulder pain and at times, pain in the eye itself and papilledma.  A person can have all or maybe just one or a few of these symptoms. IH is a very individualized disease.

You are correct, it does affect mainly women, usually with weight issues, but not always.  I know of other men that have this, and I myself had recently lost weight when my symptoms started, and I was 45  years old at the time of diagnosis, where the typical female is 20-40. 

IH can be brought on by certain outside influences, such as medicines, etc, but it can also strike for no apparent reason, which is why the preferred term is Idiopathic Intracranial Hypertension, or just Intracranial Hypertension, or IH.

I'm not a doctor, but your symptoms could be indicative of many other medical conditions, and the most important thing for you is to be seen by a doctor to get started on testing.

This is just a high level overview and what I know of IH.  Good luck, and please contact your doctor soon.  If it is IH, your vision is at risk, and the sooner you get the dx and get on meds, the less likely it is that you will suffer lasting vision issues.

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I have been diagnosed with BIH in the last 2 weeks.  i am quite scared about how it is goingto affect me and my young family.

I am 36 years of age married with 3 young boys and explaining things to them is quite hard especially when you are unsure yourself of what is happening.

I have had repeated LP's but have been lucky in the fact that the last one the pressure was nt elevated but once again I am unsure of how long this will continue.  I take 500mg of DIAMOX twice a day and I have placed myself on a strict diet which may or may not help.

Has anyone tried using a naturopath??  I was thinking of this but the unknown is overtaking my thoughts at the moment.

Any suggestions from anyone how to get through the uncertainty?

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Firstly welcome to the group, i hope it will help you both by sharing with others who know what you are going through.

Firstly John a lot of your symptoms definately could be indicative of BIH but you'd really need an MRI scan to help rule out other possibilities.  BIH does affect men and children too but mainly, according to research I've done, affects overweight women of child bearing years.  Have to agree with Babby too...a good opticion will be able to tell you if your optic nerves are ok, this is another sign that it could be BIH.

Kelly i know you're going through a scary time honey.  I must have been abut your age when i got BIH.  In a way it was a relief that i'd been diagnosed cos my partner and daughter didn't believe me when i was ill in bed all the time, used to think i was being lazy.

If either of you need to talk to someone please feel free to send me a private message through here.

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Hi

I am new to this, i am just looking for others with my condition that i can speak to, and understand what i am going through.  I was diagonsed in Sept 2007 and have 3 LP's already with two more booked in over the xmas period.  also i now have detachment in my left eye, so which is causing flashin lights, floaters etc...

my family have been great but dont understand what i'm going through.

i look froward to hearing from u

jen x

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Hi Jen, I know this is scary, and it is hard for family to understand, when there is so little known about even the cause of IH.

Do the doctors have you on Diamox or Lasix or any other meds?  Why are they scheduling repeated lumbar punctures?  I ask because repeated LPs have risk too, such as scar tissue, and leaks that can cause low pressure headaches. The problem also with LPs, is that your CSF replaces itself very quickly, so you are usually just getting temporary relief.

I'm not a doctor, but I do have IH and am coming up on my 3 year anniversary of diagnosis.  Not much to celebrate in that is there? 

I'm not saying that the repeated LPs are wrong, and they may have determined it is your best course based on your situation, but typically you would be treated with meds, and if you are looking at repeated LPs, have they discussed a shunt?

Good luck honey, I know it is scary, but I do know what you are feeling.

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Well, I am fortunate that my eyesight has been stable.  I suffer mostly from the chronic head, neck and shoulder pain, and am working with my MD on pain management meds.  We just switched to oxycontin, with vicodin for breakthrough, and I also take Cymbalta, at 90 mg.  I take 1000 mg of Diamox and 40-80 mg of Lasix. 

I don't know how long you were on Diamox, but it does take awhile to get used to.  Some have to take Zantac or other stomach meds with it, but the only real problems I've had with it, are the tingling of hands and feet, and the lethargy, and the fact that I can't drink anything carbonated anymore!

Weight loss is an interesting thing.  I had lost 70 lbs before I was diagnosed.  I know many that have lost weight, and while it makes them healthier overall, it didn't have an effect on their IH.  Some have had success with it.  This is such an individualized disease, that each person really responds so differently.

I also help manage another support board http://ihsupport.proboards98.com/index.cgi

so, if you would also like to join there, you will find many others that can also offer some guidance to you.  Their stories range from the mild to the severe, some have shunts and have had success, some have shunts and are living a nightmare.  But, the best thing is, it is very interactive and I think it is good to belong to more than one support group, and share the information wherever you can.  We are afterall, people with the same condition looking for answers and someone to lift us up when we feel at our lowest.

We also have members from UK, Australia, USA, Ireland, and it is wonderful to make connections with people who are getting different treatments that may not be known where you currently live.

One can only pray for remission to this stuff, but, while we wait for that or a cure, we just keep plugging along, and helpin each other!

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