About me and how I came to be on Octreotide

Well Welcome to my blog! I figured that this was the easiest way to keep everyone updated!

My name is Kayla, and I am 23 years old (at least for a few more weeks!).I live in Maitland in NSW, Australia (Approximately 2 1/2 hours from Sydney).

I am a full time distance education University student, in my second year of Criminology. I love every minute of it, despite how hard it is to have the energy to do it each day. I also currently work full time for the Salvation Army. I was previously working 2 days a week in a legal office, but I decided that I was not longer going to let IIH stop me from living my life as best as I could!

My IIH symptoms started when I was in year 9 (so about the age of 15). I was having daily headaches, that more often than not became migraines. This was the most serious symptom. For years I kept seeing my GP every 2 months or so. His continual response was "your a teenager, its probably hormones, you will grow out of it"!!! For several years, I think to purely get me out of his office each time, he gave a number of medications. When the symptoms first started I was a health 65kg. My GP later put me on a medication, know to help migraines, called Sandomigran. I was on these for a brief period of 2 months. During that time, I gained a massive 40kg, taking my weight to 105kg.

About 3 years ago, I went to him, yet again. I reminded him that I was 20 years old, and after looking through my file at the number of times I had seen him about migraines, I think he finally got the hint!

He finally gave me a referral to a neurologist. 

Like most people with IIH, I went through all of the normal testing. I had MRI's & CT's (which my GP had done several of throughout the previous years).

My Neurologists first course was to send me for an endoscopic echocardiograph, because on of the highest causes of migraines, is heart problems. This involved a tube with a camera being sent down my throat to the heart. Naturally, it came back clear.

Like all people with IIH, I subsequently had a lumber puncture. To say that this was the worst procedure I have had in my entire life is understatement (by way of back ground, I have had tonsils and adnoids removed, 6 sets of gromets, 6 broken arms, a broken ankle, apendix removed, and I wore a back brace for about 5 years 24/7)... Both the Dr, the nurse and I all lost count of the number of attempts it took. It was extremely painful, and if you now say the words "lumber puncture" I tense up and get anxious. I laid flat on my back for the mandatory 4 hours, and was sent home at about 8pm. By 1am the following morning, I had intense cramps in my spine, and a shocking migraine. couldn't lay down because of the pain in my spine, but I also couldn't stand up because of the pain in my head. I returned to the hospital and I stayed there, unable to get up, for about a week and half. I then returned home, with limited movement, and was in bed the following 2 weeks. 

My lumber puncture pressure was 36 (not as high as some I know, but I ws also having a good head day that day) and my previous MRI's had shown the possibility of a blockage, so I was sent to a Neurologist in Sydney. I underwent a venogram, which showed that there was no blockage, but that the pressure was increased, but it was also high near the right ventrical of the heart.

So I was sent to a cardiologist. He did an angiogram (similar to a venogram, but it only goes to the heart). Like the ECG, it came back clear. 

Given the lack of any mass shown in the MRI, and the high opening pressure, I was diagnosed with IIH. However, my neurologist fully admitted that he knew very little about the illness, and very little about how to treat it, he had only heard about it at conferences and through limited readings. He later went to a neurological conference, and presented my case, and approximately 150 neurologists worked on my case. However, they were not able to come up with a definative way to treat it.

My Neurologist explained that there was a couple of surgical options availble, namely a shunt or, as he called it, a "plug" (basically a sub arachnoid bolt). He had heard only bad stories about shunts, so was hesitant to take this course of action (which was ok by me!).

Over the 3 years I have been seeing him, I have been on 17 different medications.


On Wednesday 8th September 2010 I logged on to the iihsupport.org website, and cried out for help from fellow iih'ers, seeking advice on what I should ask of my neurologist. On Thursday 9th September 2010, I found a reply post regarding something called "octreotide". I had no idea what this was, and simply ignored it. On Monday 13th September 2010, I emotionally broke down. I cried for hours and hours, not know how I was going to cope living like this. I had resigned myself to the fact that I may have to have surgery, but I was unable to convince my parents that this would be an option. I was due to see my Neurologist on Thursday 16th September 2010. On Tuesday 14th September, I was still emotionally wrecked.


I cried out to my Lord and Saviour, and laid down my heart seeking an end to this life!


On Wednesday 15th September 2010, I logged on to iihsupport.org, to find the post about Octreotide, and to see if I could find more information. Within the space of about an hour, I found all of the posts on Octreotide, and had found the Greek trial study information. I found information to see if it was available in Australia, but ended down hearted, finding that it was only available to people with stomach tumors. I continued my search for information, and soon discovered, that I may have had a distant chance of being able to access this medication. 


However, my information soon made me aware that if I was going to go on Octreotide, I was going to have to pay for it.... and it wouldn't be cheap! (at this stage I was of the opinion that it was going to cost about AU$40 per 5 vials) I sat down with my mum and dad and presented them with the information I had found. They instantly agreed to back me up, and that they were willing to pay whatever it took.


Thursday 16th September 2010 arrived. It was the start of what would turn out to be an emotional roller coaster! I worked that morning, and 1pm my mum collected me from work, ready to head to the neurologist. I had compiled all of my information on Octreotide into a folder, and I was armed and ready to face my neurologist to request that he let me try this medication. I was readily prepared for him to tell me that he knew nothing about it and that he didn't think it would be the way to go. I was also prepared to then go straight to my GP and ask for a referral to a new neurologist, and I was prepared to meet with every neurologist in the country until someone agreed to let me give it shot. 


I became extremely nervous when I arrived. As usual, his first question was "how are you feeling today"... my response "Probably best not to ask that question". He quized me on how my previous medication had gone. I told him it had no effect and that I had gone off it. I also advised him that the one that had been working minimally I had also gone off (though I didn't tell him that it was in preparation to go on Octreotide). 


I asked him if he knew anything about Octreotide. He told me that he had heard of it, but didn't know what that had to do with my head. I quickly explained the study to him, and then provided him with a copy, along with the stories from those people that had been on it, from the iihsupport.org website.


He briefly looked at it, put it to one side, and proceeded to question me about how I was doing emotionally and how I was sleeping. I completely broke down. I thought that he was brushing of my research, and that he wasn't going to even consider it. We went on to discuss my sleep, and he decided to send me for a sleep apnea test, because in his words "even if it isn't effecting the head, I still need to sleep". I was devistated!


Then an absolute miracle happened. He turned to me and said "so what dose of Octreotide did they use?". I told him. "And how long did they say it would take to get some sort of result?". I told him.


The next thing I knew... He handed me a script for Octreotide 500mcg/ml (thats the largest we can get here) for 5 vials, with 5 repeats... enough for about 14-20 days. His words to me as he handed me the script..."There are far worse things you could be injecting into yourself... go for it!" I held back the excitment tears just long enough to leave the office and then I broke down. I couldn't believe he had said yes!


I think I cried for about 30 minutes, as I walked through a local shopping centre (I had to go and claim back my consult fee). I think people must have thought I was nuts, because I had tears streaming down my face, a massive smile on my face and a spring in my step!


I went home, and being a Thursday night, the local chemist was open late. I went up and ordered it.... not at all prepared for what was going to follow!
I spoke to the chemist and provided her with my script. Her response was that I was going to further paper work. This paper work would have to be provided to show that I had approval from the Australian Government to be taking the medication. This was not going to be easy today, because it is technically not approved for anything other than treatment of stomach tumors. I took slight comfort in knowing that I had legislation that stated that it could be used to treat an illness that effected less than 2,000 Aussies, which based on the stats, IIH would fall into that category. Though I was still deflated, thinking it would take more time to start. 


Then the bomshell landed. We asked them what it was going to cost... Since I was using for an unapproved purpose, it wasn't covered by the PBS... The PBS is the Pharmacutical Benefits Scheme. This is where the Government pays a contribution towards the cost, and once you have spent a certain amount on medication in a year, the meds are free (we had met this threshold already). The Chemist informed me that it was going to cost about $6,000 for 90 vials (approximately $400 for 5 vials). Mum and I almost hit the floor! The tears started flowing, but they were not happy tears this time. I thought my chances were over! There was no way I could ask my parents to cover that sort of money. Mum was in shock but was adament that they would pay it. 
The Chemist said she would investigate the need for the authority, and the cost and would call me the next morning.


I went home deflated, thinking that I wasn't going to be able to get it because of the government authority and unhappy because of the cost. 

Friday 17th September 2010 started. I went to work, slightly hopeful, but down and out. I had prayed the night before, and spoken at length with mum and dad. They were determined to pay for it to make me better! I finally caved and agreed.

I arrived at work, only to discover that I had left my mobile phone at home.I quickly phoned the chemist can gave them my works phone number, and phoned my neurologist to let him know that the chemist might phone him to look at getting the authority.His secretary (for the first time ever!) said she would put them straight through when they phoned. 

I called my mum to fill her in and she advised that she had sent an email to a few close friends requesting prayer that we would be able to get the authority.


About 10.30am I received a phone call from the chemist. They advised that they could definately get the Octreotide, and that I DID NOT need the governmern authority. It was a go ahead. I asked how long it would be, expecting it to be a few days. I was advised they would have it by the next day! I was elated! And again the happy tears started to flow! I was going to get better!

To top it off, Igot home to find out that someone at mums work had left an anonymous donation. The donation would cover the cost of the first 5 vials, and there would be change left over.


Saturday 18th September 2010, 11.20am I received a phone call saying that the meds had arrived! I went to the chemist, and I now have sitting in my fridge 5 teeny tiny vials of Octreotide. A further blessing came when my needles were free because my dad is a diabetic so they were able to put them through as free!


Its now 4.30pm. In an hour and half I will have my first shot of Octreotide (having been advised that it is best to split the doses)!!

I have faith that this will work!