Hi Everyone - I have been diagnosed with having bilateral papilloedema, intercranial hypertension and cerebral venous stenosis. Looking back at I have had symptoms for more than two years but didn't know what the problem was. i just thought that i worked too hard and that this is how life is when you are in your 50's. ))
The papilloedema was found during a routine eye exam in early Macrh, the narrow veins in my head were found through an MRI with dye. I then had a lumbar puncture and the opening pressure was 30, the specialist took the pressure down to 16. I got off that bed and stood up and felt FABULOUS!! I had visual clarity and it felt like someone had opened a window in my head and let in beautiful spring fresh air. I can't describe the feeling. I was ecstatic! It was then that I realised that how I had been living had crept up on me and become my 'normal' and that perhaps it didn't have to be a permanent way of life - I might be able to get a new normal and live again! It didn't last long and I was back to my usual fog the next day. Then the doctors started me on Acetazolamide and I reacted badly to it- so that was a no go.
The day after the drug reaction I started to have awful headaches and nausea and was very wobbly on my feet. They thought that I was leaking spinal fluid due to the lumbar puncture and that my CSF pressure was low so they put me in hospital for two days and did a blood patch - which is where they inject some of your own blood into the spine which then clots and seals up any holes. They used 18 guage needles and had two goes at it before they got the needle into the right place. They managed to inject 15mls of blood in and it was so weird - I felt the blood rushing round my head and I thought I was going to pass out - it was like I was going under anaesthetic. I think the two anaesthesiologists were as shocked as I was!!
Anyway it turned out I didn't have leaking spinal fluid and now I am left with a permanent headache - or series of different types of headaches if you like as they vary in type and place during any one day. I have very loud permanent tinnitus, whooshing in my head, awful fatigue and my vision is like looking through dirty glasses. I have also just developed this scary breathing problem at night where I wake up gasping for breath. It's nearly 2am here in New Zealand and I am too scared to go to bed. I did go to bed earlier and slept ok for an hour but then woke up struggling for breath. it's the second night i have had this - the last one was about a week ago. I don't feel particularly anxious about things - well except this breathing thing of course!! So I don't know what this is all about.
I am having cerebral venous stents put in on the 8th May in Auckland Hospital - I hope that they can manage to do it and they work. It's pretty scary but I am hopeful that they can give me back what i felt the day of the lumbar puncture.
I am so sorry to read how many of you are suffering out there and it's not fair - but it is comforting to know that you know what this feels like as it is pretty impossible to describe it to those that don't have it - especially the exhaustion, I wake up just as tired as I was going to bed - that's when I do sleep of course! ) It makes it hard for family, friends and work mates to comprehend. Anyway it's nice to be here.

Welcome to the group forums Diane. I can't believe how much you have gone through and how awful it must have been for you. I hope the stents are going to work for you and relieve some of your problems, so that you can start living again. I know it is so hard to stay positive especially when you are constantly tired and even the little things are too much.
I would see your doctor about your breathing issue, it could be anxiety, but until your doctor checks you over you, you're not going to know for certain, and you can't stay awake indefinitely. You've got a lot going on and I applaud your attitude so far, because you seem to have a no nonsense way about you.
We're always here for you and that's even when you need a good old rant, which many of us do from time to time. You're not on your own and have our full support.
Heidi

Hello Heidi - many thanks for the welcome and support. I try to be practical (I'm a Virgo after all!) but I do have my moments of frustration and sadness I'm afraid, but on the whole I have kind of decided that I have these problems and I have to have tests and treatment to see if I can come out the other side and it will only make the process worse if I fight it. It is teaching me patience and to allow myself a bit easier on myself if I am not up to going somewhere, or I can't manage to do something I normally could. It's so much a learning curve at the moment. But there is a such a wealth of information here - how lucky to have found the site. i am also in the process of registering for the research programme.
Thanks again. Diane

Hello Diane, and

I hope that as the docs continue to try different things with you, that you find that both the headaches and the tinnitus are actually not permanent. Wouldn't that be good news. I have had tinnitus for over 5 years but I barely notice it anymore.

May 8th will be here before you know it.

Thank you so much for the warm welcome. It is amazing to see just how many people are afflicted by this illness in so many different ways too. Very sad but from a selfish point of view very comforting. Diane

Hi Diane, I just wanted to add a quick welcome too! I would definitely follow up w/ your physician about your breathing issues. It could be response to new med, treatment, or symptom that developed from IIH or other conditions. Sleep Apnea has been an issue for many members, but concerns me that it started all of a sudden. If you started a new medication, I would check the side effects and call your doctor immediately. It is amazing what we learn to tolerate, but sudden changes are always a red flag for me.

You've been through a lot, but I hope you're realizing that you're definitely not alone. Please check out the site and let us know if you have any questions or concerns. We'll do our best to help you through it..good luck on May 8th!!!

Take care, and keep us posted!
Julie

Hi Julie
Many thanks for that! It's wonderful to be able to have folk relate to what I am going through - such an awesome site.
I'm not on any medication at present I couldn't tolerate them. I do start anti platelet drugs tomorrow ready for my surgery next week.
With help from a lister I have worked out that I probably have sleep hypopnea as my symptoms fit perfectly. Slow low breathing that makes me feel like I will forget to breath. I am talking to my doctor about it tomorrow. It's apparently not as risky at sleep apnea so I am less panicked about it. It can happen when the central nervous system is under stress. i think things changed for me when i started the medication as the reaction I had was quite nasty and then they did the blood patch and added the 15ml of blood to the system. I am no doctor but it is like the pressure has shifted and things in my head are irritated now that perhaps weren't as irritated before they messed around with the pressure - if you get my drift )
Hopefully things will resolve themselves soon - I have a lot of hope pinned on it!
Thank you again Julie - your a STAR! Diane

Hi Diane! Welcome to the group! So glad that you are here with us.

So sorry to hear about all that you have been through since your diagnosis. I hope the stents will bring about relief from the pain and tinnitus. Your tinnitus may not be permanent - I thought mine was as well, but it's gotten under control since my pressure has come down with medication. Now it varies, and sometimes is not noticeable at all on "good" days. So maybe the stents will do the same for you.

*hugs* We're always here for help and support. Great to have you along!

Good luck with your stents Diane. I'm not good on time differences, so it may already be 8 May where you are. I hope you got this in time, if not, I hope it went well.

Hi There

I have just come home from hospital - I spent 3 hours in theater but they didn't do the stenting in the end. Although the major vein at the back of my head is considerably narrowed the pressure within the vein is ok. They measured it twice through angiograms in both groins. Neither specialist can believe it but they didn't want to put the stent in unless they are sure there will be some benefit due to the risk of stroke.

They came to see me before I was discharged and they are now thinking that it was being under anesthetic that maybe gave a false pressure reading and they are thinking of giving me another pressure test but awake this time. Otherwise it will be a shunt.

I am going for another LP once the blood thinning drugs are out of my system just to see where I stand at the moment and to give me some relief. They are pretty sure it will be high because of the pressure headaches, ringing in the ears and vision distortion.

Anyway I woke up from theater with a catheter, a drip and 4 lures in my arms - it was hard to believe that I have come out of it exactly the same as when I went in there! Just a bit battered and bruised from it all!.

One good thing that has come out of it is that the specialists are really interested and are keen to research and work out some sort of plan for me as they haven't had this exact situation before. I also had a fair bit of relief from the blood thinning drugs that I took a week before surgery - they shouldn't have made any difference but the fact that they did relieve some pressure and lightened my mood has triggered the specialists to research that aspect also.

So who knows where from here - I just know it's not going to be a quick fix.

Diane

Diane, you are very fortunate to have such caring doctors on your side. They are not going to "try" things just to try. That is very refreshing. But, the fact that they aren't giving up and dismissing you is even better. Yay!!
Be sure to keep a symptom log so you can keep track of what has been tried and what has/has not helped.
Looking forward to hearing the next report.

Yes you are absolutely right Wylee - after reading some of the posts on this forum I do realise that we are very lucky and very spoilt here in New Zealand. I also felt more than a bit humble being in a ward with brain tumour victims and seeing what they have to cope with - poor things. Life can be very unfair.

Diane

Me Again

I have mentioned that I have been having some scary breathing problems at night and it turns out to be sleep hypopnea rather than sleep apnea - I breath very slow and shallow and it feels that if I go to sleep I will stop breathing - apparently it's not as dangerous as sleep apnea !! So I am lucky but it's still scary and exhausting.

Anyway I forgot to mention in my earlier post that what was most interesting about the last few days in hospital was that the chief specialist is convinced that my sleep hypopnea is directly linked to this IH - I nearly fell off the bed when he said that as I know from what I have read that it is not widely known or accepted by the medical profession! He said that there is a very high chance that the pressure on my central nervous system is causing the breathing problems at night.

I just thought that those that are having breathing disturbances at night would find this interesting. If I learn more I'll definitely post about it.

Regards
Diane