Hi Everyone!

My name is Lisa and I live in Melbourne, Australia and I was diagnosed with IIH in January 2012. My main symptoms are headaches, mostly at the front of my head and pressure type earaches in both ears which often feels like I have a rod going between the two and it feels like it also puts pressure on the back of my throat and is really uncomfortable and painful.

For me the symptoms started in November 2011 and I thought it was a sinus headache, I got prescribed antibiotics for it and then when they didn't do anything I went back to my GP and after she looked in my eyes she suggested that I needed to go see my optometrist but didn't say anything else, I assumed maybe I needed a new set of glasses or something. So the next day I saw my Optometrist and she tells me that my optic nerves look swollen and she wants me to go see an Ophthalmologist. What freaks me out the most though is that she calls 3 different
ones while I am in the room with her and says that I need to see someone within 7 days - that's really scary stuff!! I then also had to have a field test done.
So a week later and after lots of Google Doctor investigations which are freaking me out even more the Ophthalmologist checks out my eyes and then asks me if I have private health insurance which freaks me out even more and while I am there in his room he calls the Neuro department at one of the big hospitals and and says I need to be seen ASAP as my optic nerves are definitely swollen and this is a high priority - More freaking out by me!!!

A few weeks later I get booked in for an MRI which comes back clear and also an LP on the 22nd December. The first appointment for the LP was horrible! Two neuro surgeons couldn't find the spot and after 10 attempts and my laying there crying my eyes out due to the pain of it all (I never want to feel a needle hit my spine again!!) they decided that they would stop and I'd have to get it done under x-ray so it's guided. I've never felt pain like that before and it was like they didn't even care, I felt like such a pin cushion and when the needle is hitting the nerves and the bone - it's really scary and painful despite the anaesthetic. The bruising was quite impressive and horrific at the same time.

The following day, 23rd December, I went back and thankfully a different Dr did the LP and there were no issues, or anything and it barely hurt, it felt like a pinch - they were horrified about the bruise on my back from the previous day to the point that they needed to try a whole different area.

Unfortunately having the LP done just before Christmas killed my entire Christmas as I got the headaches you get afterwards if you aren't laying flat on your back, which living alone at Christmas time meant it was pretty crappy and lonely for me but I felt so miserable that I just wanted to be alone anyway but not being able to stand up to even cook was a problem - I remember I ate a lot of cake as I made one for Christmas and it only took a minute or two of standing to serve a slice before laying down again.

Once I got over the LP I had a week or so without any side effects and it was awesome as 2 months of constant headaches and earaches and taking pain killers all day starts to wear you down.

I was diagnosed with IIH in January with a pressure reading of 27 or 28 which they said isn't very high but seeing as the LP took away my symptoms I clearly have IIH.
I was first put on Diamox but that left me feeling so exhausted and tired that it was an effort to even hold my head up and lift my arms to type at work. After getting some blood tests done my bicarb was down to 15 and so I had to stop taking it straight away.
I was then put on Topamax in mid Feb and I got quite a few symptoms - tingly hands and feet, lack of appetite, irritable, couldn't regulate my body temp, brain fog, etc etc and then I started feeling depressed and really low and not wanting to go anywhere, I wasn't cleaning the house or anything and so on June 4th I stopped taking it as I'd rather deal with the headaches as I was so miserable and unhappy. After just a day I noticed an improvement in my mental health and I'm feeling so much better and normal again - I'm glad I stopped the topamax.

My neuro specialist last week said my optic nerves look fine - YaY! At least the evil medication was working. In January I was told that losing weight could help with the symptoms and so far since Jan I've lost 10% of my body weight (they said that 5% is a good start) so the hope was that the weightloss would be enough to keep it in remission - it hasn't.

Less than 24hrs after stopping topamax my earaches were back and now 11 days later they are getting worse but so far no headaches which is good but I know that it will probably happen as the ear aches/pain is getting worse.
I have another appointment in 2 months as a followup to see if my optic nerves are OK or not from stopping the meds.

A few months ago, while taking topamax I also suffered from my first bout of Diverticulitis and the lack of appetite from the drugs wreaked havoc with that but I finally got it sorted with fiber supplements twice a day and 15 months ago I was diagnosed with Endometriosis. So in the last 15 months I've been diagnosed with 3 incurable diseases/health issues which will required life long maintenance which has been really really crappy.

My plan moving forward is to continue to lose weight and hope that helps as the medication doesn't work for me.

Hello Lisa, and

It sounds as though your experience is pretty much "normal." We seem to learn alot about what does and does not work just by trial and error. We won't know which of the possible meds or combo of meds might do the trick and keep our pressure down or to see what other alternatives are available to us. I am so glad to hear that your docs are atleast trying. So often we find that the docs just don't bother with us.

Don't wait til your next appointment in two months if your symptoms start coming back strong. There are other meds that you can try (I tried a whole bunch) but do give losing weight a try. It doesn't seem that there is a real "cure all" for IIH, some doctors feel that extra weight, or hormones can make the IIH worse. Others have learned that isn't always the case (I was post menapausal when I got sick) and many women have lost lots of weight and are still have IIH. In fact, there are men who have IIH (supposed to affect women of child bearing age). So much misinfo out there, and unfortunately, the docs believe some of it!

I highly recommend keeping a medications/symptoms log (available on this website) that will help you and your docs follow what you have tried and how they affect you. Keep track of how your weight change affects you also.

Hang in there. It will get better.

Hello Lisa and to the group.

I am so sorry that you are having to go through all this, and that you're experience so far has been so awful. I agree with Linda, keep a record of your symptoms and medication, so that you can accurately log all your symptoms with your IIH, and also the effects of your medication. This will help when you see your doctor and give him a full and concise record of what has been happening since you last saw him.

Well done on the weightloss, I know it hasn't made much difference but at least you are proving to your Doctor that the weight theory doesn't hold up in your case. As Linda says there is so much misunderstood about this disease, and it is very easy for it to be put down to weight, but there is also strong evidence that hormones are a trigger for it, as has been proved in my case.

You're not on your own and we are always here for you. One of the things that we encourage is having a good vent in the Group Huddle, especially as we all understand. It does help and it is very therapeutic. Group Huddle isn't there just to ask questions. We also encourage starting a Members Journal because it gives you the opportunity to write down your thoughts and feelings, instead of bottling them up.

It takes time to come to terms with having health problems such as these, and you can only do that in your own time and at your own pace. Things will get better and we will help you deal with everything one step at a time, rather than trying to cope with everything all at once.

Heidi

Hi Lisa..I'm glad you found us! I also started with an endometriosis diagnosis. Actually, there are a lot of similarities in our stories..it really did just seem like one thing after another, so I completely understand what you're talking about. I think you'll find that a lot around here..it's really a great support network! I won't repeat the advice Linda and Heidi have already provided..just wanted to say hello and let you know that you are definitely not alone.


Julie

Thank you for the welcome Wylee, Heidi and Julie!!

Heidi I'm interested in how hormones affect your's? I haven't heard of that theory before but then I really haven't done a huge amount of research but I think this site will be fantastic for support and knowledge.

The specialists all said 5% weightloss is usually enough but I've lost 10% and it has helped (or it's the lasting effects of the medication) but I still have symptoms

A journal is a great idea,

hi Lisa;
I don't tolerate the meds very well either, but for me my sleep apnea is a huge trigger. if I treat the sleep apnea then I can take a lower dose of the Diamox and tolerate it better, with some improvement. I don't get as many headaches as I just get "brain fog" which is pretty disabling. I'd rather have the pain, honestly. losing weight should help sleep apnea too, but for me I was still really sick at 126lb; quite thin for me. sleep apnea is really caused by a narrow upper airway, so losing weight will help but is unlikely to cure it. I'd recommend getting checked for that to make sure it isn't an issue for you too. 1/3 of people with upper airway resistance syndrome do not snore. but all it takes is a little hypoventilation to make your intracranial pressure go up, you don't even have to completely stop breathing. as a result, mild sleep apnea is many times missed by sleep labs. it's a difficult problem.
Deb

Hi Lisa! I'm late with my welcome message, but wanted to say hi and I'm so glad you've found us! I hope you'll find this site to be a great source of information and support, as I have.

Way to go on your weight loss efforts! For me, weight loss has not yet led to remission of my IIH either, however it has allowed me to maintain at a lower dose of Diamox (which is a big deal, as I experienced a lot of side effects at the higher dose) and my energy level and stamina have improved immeasurably. So for me, it's been about quality of life with IIH ... not necessarily remission of IIH. Though I do still hold out the hope that remission will happen too!

*hugs* Keep us posted on how you are doing.

Thank you everyone for the welcomes I'm slowly reading through the other threads and information on here which is very helpful

The way my trigger was linked to my hormones, is that it started with my pregnancy and eased when I was on the pill and Diamox, and I reached remission. They realised about 6 years later I was taking the pill, when I told them I was having tummy problems and nausea, they asked if I couldn't be pregnant I said no because I was on the pill. They then told me to stop taking it immediately. When I was taken off the pill my periods became very heavy and irregular (every couple of weeks), my remission ended and things got progressively worse leading to me having to be shunted.

They then took all these things in to consideration, consulted gynaecology who recommended the Mirena coil. This then helped stabilise everything even though I still needed the shunt. When the coil had to be removed due to a shunt infection, things got worse again, so I was referred back to gynaecology for the Uterine ablation, which has been absolutely marvellous. They only do that procedure though if you are done having a family.

I don't think enough research has been done regarding hormones and IIH, which would prove that being on the pill would actually help keep the symptoms under control if hormones were found to be your trigger. I have always argied that in my case, had I been kept on the pill, maybe ?I wouldn't have needed a shunt, but that is my own personal theory.