No longer the only Aussie!

So i'm no longer the only Aussie on Octreotide, and I am stocked! So happy for Ken, who has received his first script for Octreotide. I am praying that it works as well for him as it has for me.

Me... Im doing pretty well! Almost 3 months in, and (despite other issues) I feel great. This has been the best birthday/christmas present for the next 10 years!

Neuro was HAPPY!

So I went and saw my Neuro yesterday for a check up after starting the Octreotide. To say he was happy might be an understatement.

He was thrilled with my progress, and wanted lots of details so he can tell others!

He doesn't want to see me again until April, at which stage I will have started the coming off process!

So excitted! and I continue to Praise the Lord everyday for giving me the opportunity to be on this medication!

Path to Success!

Im not getting my hopes up, and I am remaining cautiously optimistic... but I think... think... that I am getting really close to a day without headache!

Still battling with the ankle and being on crutchers which is resulting in headaches from the neck, but the headaches from the IH are minimal. I have had several brief moments each day for the last few days were I have had... NO HEADACHE!!!!

So we are getting there!

Back to the Neuro this morning. Since I last saw him I have lost 10kg and am down to pain levels of 3/10 all but everyday! and haven't had any pain killers for the head in almost 3 months!

WOO!

First MAJOR headache!

Hi Everyone!

Yesterday I was struck down with the first really bad headache since starting the octreotide. It was a doosie (or so I thought) until I stopped and thought and realised it was what I use to deal with everyday! hehehe!

Still dealing with the after effects today, hoping it will ease soon!

Still out of action with a fractured ankle, which (up until yesterday) is causing me more pain than the head for a change!

Been a little slack... sorry!

Sorry I have been slack with the up dates.

The head has been about the same. Except for 2 brief moments about a week ago.... I had... wait for it.... you ready.... NO HEADACHE!!! It lasted all of about a minute, though it may have been longer because it took me a minute or two to realise what the strange sensation was!

I have a broken ankle, which means using crutchers which has put my neck out, so its a little hard to tell at the moment if the bad head is normal IH headache, or neck... I think mostly neck, which has been really good!

All in all things are going well! Approaching the 2 month mark next week!

SHOPPED TILL I DROPPED!

So I have been doing pretty well lately... On Saturday I was able to go shopping with mum. Started at 8am with taking the car for a wash and got home around 4pm... normally come about 10am I am a wreck and ready to head home! But nope... Made till about 3 before I started to feel really bad!

Head is alittle off today, but only about a 5 or 6...which is still really good! Spent the weekend doing uni on Friday night and Sunday, which won't be helping!

Hopefull will start to get consistant 3's soon! I think that because the monthly injection didn't work, when I started the daily again last week it was like starting from square one...

Feeling a little off....

Im feeling a little off today... not entirely sure why... Have a headache (but its not the same as my normal IIH headache), and my whole body aches! Hoping I'm not coming down with something!

Despite that... the head is doing well! Improving a little more each day!

Back to Daily Injections... Feel heaps better already!

Saturday morning I still off the daily injections (so much for the monthly one working!)...

I had a show to go to and was in soooo much pain by the middle of the day. Pain level had to have been a 9/10!

At 6.00pm I started my injections again. Pain level was 9/10, and I had a party to go to... It was the last thing that I wanted to do, but I went anyway. By 10pm, the pain level had dropped to 6/10! I couldn't believe it!

Sunday I felt like I had a hangover (or what I assume a hangover would feel like), so I slept the day away.

Today, Monday, pain level is about a 7/10... so the numbers are coming down as the octreotide gets back in to the system!

Switching Protocols

So when I started I was planning on doing P3... Daily injections for a month, monthly injections for 5, and then finish with daily...

I had my first monthly last saturday, and ever since I have been getting progressively worse... So we have decidied I will stick to the daily ones, therefore swap to P1...

Maybe I was doing better than I thought....

The head hurts today... probably about a 7 or 8... which makes me realised that even last week when it was overcast... it wasn't that bad!

Gives me a bit of relief to know... was really starting to worry!

Any chance of the headaches being a 2 on a regular basis within the next 2 1/2 weeks?...

To be headache free by my Birthday... don't know that I could ask for a better present than that!

Update... sorry I have been slack!

Wednesday wasn't too great because it was overcast and ick! Thursday however was much better! Was even able to have a short walk after dinner!

Today is a bit like wed... but thats because its overcast and ick again!

Booked for LAR tomorrow!

Scared of sneezing... No more!

Woke up this morning, and just after my injection I felt a massive sneeze coming... I braced myself for the normal brief vision loss and subsequent floaties, and expected head pain.... But it didn't come!!! YAY!
Head started better than the last few days... then I was naughty and lifted the work mail bucket... woops! But still better than the last few days!

Booked in with a friend who is a nurse for Saturday's Sandostatin injection... Can't wait till the daily ones are done!

Day 14

Sorry... I have been a little slack... Things haven't been too crash hot this week. Had a monster migraine last night. 

Hit the full dosage this morning, so will continue for a week and then go to monthly... Hoping that we will see a vast improvement this week, before we go to the monthly ones. 

Would kill for a decent night sleep!

Day 11

Not feeling to crash hot today. Not sure why. Probably the worst headache since I started the Occie.

Had a bit of an emotional breakdown when I realised the headache was ever present. But as my oh so wise mother reminded me, it is still very early days in the treatment, and I am not at the full dosage level yet, and to give it time.

Continuing to trust in the Lord each day.

Day 10

Feeling a little better than yesturday, which is always good!

Just found out that the monthly injections have to be in the butt! Eek! Oh well, the things we do to get better!

Day 9 - No sympothy self inflicted

I have no sympothy because it was self inflicted. Killer head today. About an 8/10. Think I over did it on the weekend. Lesson learnt.

Day 8

Woke up with a score of about 6/10. Think I did too much on the Saturday.

Had a lovely day out with friends which was nice for a change.

Stayed out to late, which meant I was late for the injection. Note to everyone who is still to do this.... make sure your on time, because you notice of you are 2-3 hours late!

Day 7 - First weekend on Octreotide

Woke up feeling pretty good.

Had a double dog show to go to, and I was curious to see how I would be, expecially in comparison to the week before.

Felt pretty darn good (all things considered) once it was over. Pain score was about 5/10

Day 6

So the week is coming to an end, and I am still better than I was! Not a lot of improvement over the last day or 2, but thats ok, I have to remember to give it time.

Woke up with a really strange puffy eye this morning, but don't think that it is related to the Occie.

I have worked out that doing the injections in the thigh might hurt a little more while I do it, but the after pain is far less, so will keep doing it that way for a while.

Dog Show tomorrow, so I will be curious to see how the pain levels compare doing exercise on the Occie, compared to last week when I wasn't.

Day 5

Having a bit of a rough one today. Head is a little bit on the tender side, and I have a little bit of the whooshing, but thats ok, its to be expected.

Tomorrow will be a better day I am sure!

Day 4

Day 4

Still getting use to having a needle twice a day, learning that it definately needs an hour to warm up before hand, so that it doesn't sting as much.

A bit the same today. Not a lot of improvement, but certainly no worse than yesturday!

Day 3

So it's day 3 on the Occie (as I am now calling it, because it is easier to say than Octreotide!)...

Still Whooshie free (YIPEE!!), and the body aches and pains are subsiding!

Sunday's head was the equivalent to being on no meds at all, and I wanted to kill someone!

Yesturday was like a bad day on meds, and today is like a normal day on meds! Hope that tomorrow is a good day on meds and that days 5 & 6 produce limited to no headache!

Doing research into the best way to do this...

Have heard that you can do the daily shots every day for the 8 months, or do them for a month and then have a monthly "top up" with the stronger long lasting version. What I don't know is, will the final result be the same?

Please be praying for those people that are having a bad IH day... I know there are lots of you!

Hopefully one day, we can all be IH free thanks to Occie!

Giving the shot....

I have had a few people ask how I cope with having the needle each day... 

My response is, that it is either have the needle or stay sick forever... Which would you choose?

I had a friend who is a nurse show me what to expect (don't just assume that your neuro or someone will show you! You may have to figure it out for yourself!)

Luckily it is subcutaneous so its pretty easy.

I have learnt that if I just start to do it, and if I think I can't, hold the needle there, and breath, then just put it in! The hardest part is the actual injection, because sometimes it can sting, but I just breath through it, scream if I need to, and get it done!

Day 2

So its now day 2! Feeling awefull with the nausea today. Had the day off work. Feel like I want to hurl, but it hasn't come yet. Had a mild case of diahrea this morning (I know... TMI)... Getting there though. Been 6 hours this mornings shot, and no whooshing yet. Head still not great, but it is better than yesterday so we are on the way to improvement I think. 

The Lord is working wonders when it comes to the funding! Had to have a sleep apanea test the other day, and when they found out I was starting this new trial and what it was going to cost, they bulk billed so we didn't have to pay! Praise the Lord!

Day 1

So yesterday, Sunday 19th September 2010, was day one...

First injection was at 6.10 am (I was little late because I was crazy nervous!).

Felt fairly ok after. Really nauseas though, but that was to be expected. By lunch time I realised that the whooshing in the ear was non existent (though it came later in the afternoon)... But I was still blown away! Didn't expect it to work that fast. 

The injection site was tender for the day, but I soon recovered. 

Second injection was at 6.00pm and went much better than the first

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!