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 Introduction

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Chelsea Fortress

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PostSubject: Introduction   Wed Apr 25, 2018 11:42 pm

Hi!

Just a quick introduction on myself and how I’ve got here. I’m Chelsea, 24 year old lady living in Melbourne, Australia. I’ve found this page through frustration of experiencing all thing’s IIH and having no one in my immediate day to day life to express these frustrations too that have experiencing them. That being said, I have a supportive family & partner which helps a bunch, though they struggle with completely understanding it.

I was diagnosed with IIH just over two years ago.  Following prolonged daily headaches I reached out to my Optometrist to check my eyes, who sent me to an Ophthalmologist the next day who sent me to get an MRI & to my first Neurologist the following day. Like many others here, they were concerned I had a brain tumor - that was a fun phone call ‘Happy birthday mum, p.s I might have a brain tumor’  Following a normal MRI, they completed a lumbar punch and confirmed that I have IIH.

My neurologist put me on a bunch of Diamox and I went up and down for a year, not being able to work and being extremely frustrated with no stability. I’d have a few good days then weeks of bad days, my neurologist was constantly changing my dosage which was no good. Due to the high dosage of Diamox that I was on, the side effects were wreaking havoc on my body, I kept asking him about any other treatments though he was unwilling to try anything. This brought me to my current neurologist who is an absolute gem of a human being. Dr Neil Shuey, the man, the myth, the legend!

My new neurologist is more invested in my quality of life, he wants to treat the symptoms and the side effects in place of just taking Diamox and hoping for the best. After trying a few different medication I have finally found a combination of Endep 150mg & Verapamil 240mg that has given me some relief. Although the papilledema and ICP has gone down, I was still experiencing painful daily headaches. My neurologist advised that I have IIH & chronic migraines which is why when the IIH is under control I still get headaches. This is where I may differ from others, to help with the suspected chronic migraines, I have started Botox injections every  12 weeks to help. I am approaching my third treatment and looking forward to it because I have noticed some relief! The combination of medication and botox has finally started to give me some sort of stability and normalcy. I still do have rough days, instead of daily this is now once a week. I’ve been having a rough few days and have had some of the worst migraines I’ve had in a years, which brings me here.

How do you continue to go on?

This may be a little dramatic, but at the best of times life can be tough, how are we meant to go day to day while living in constant pain? My career has really taken off over the last few months and I’ve found myself managing a team, though over the last few weeks it’s been so difficult to work through the pain and have people relying on me that I’m not sure I can keep it up.  I am 10/10 throwing myself a pity party, but I just need someone to say, it’ll get easier or give me some tough love & reality, it won’t get easier, saddle up and get ready for the rest of your life. I suppose I’d like some guidance, some sympathy and some support. It’s great to find a forum of people experiencing the same situation as myself.

If you have any helpful tips or advise, please let me know. Also, if you interested in knowing more about the botox treatments, hit me up, happy to further explain. 
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medmisfit
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PostSubject: Re: Introduction   Thu Apr 26, 2018 6:24 pm

Hi Chelsea, welcome to the forum! Unfortunately, it's not unusual for people with IIH to develop other types of headaches or disorders. I also tried Botox for migraines, but all it did for me was paralyze my eyebrows, so I'm glad that you're finding some relief! There is a section for Alternative Therapy, if you would like to add your experience to the Botox Injections entry (http://www.ihaveiih.com/f13-alternative-therapy). 

I also couldn't tolerate the Diamox and was unable to work because of the side effects. I had a good response initially, but got to the point the Diamox wasn't helping my vision even when we added Lasix, so I ended up with an LP Shunt. The VP Shunts were just experimental for IIH at that point, so I had no choice and had revisions every couple years. I did finally upgrade to a VP Shunt in 2015 and have been MUCH better..fingers crossed!

It is honestly difficult to give you a definitive answer about what to expect because IIH and treatments affect everyone differently. Some people only have one episode of IIH and it never returns, others deal with it throughout their lives. I personally worked with vocational rehabilitation after the LP Shunt and have maintained full time employment since 2005. I have had to make some adjustments to daily routines and activities, but live a full life most of the time. I think it's important to learn your triggers and develop a toolbox for relief. For instance, I get barometric pressure headaches, so learned to lay with my head elevated at 45-60 degrees to help with symptoms when rain is coming. My eyes also tend to ache when a headache is starting, so I have an eye pillow that's cooling and helps to relieve pressure. If you haven't already started one, I would keep a symptom log to help identify any triggers or patterns. I am affected by weather, food, activity and others mentioned sleep apnea, and the environment such as certain chemicals, detergents, etc. We have an example of a symptom log in the Useful Guides and Print Outs section (http://www.ihaveiih.com/t59-i-have-iih-symptom-log), but I was already keeping a food journal and incorporated it into that style. I use a bullet journal now and have a specific page for tracking my symptoms and triggers, so use whatever makes the most sense for you.

In saying all of that, you are definitely not alone! We all have good and bad days. I am currently in a 'sick of this bs' mood. I do well for long periods of time, but chronic pain and illness is tough..we all have our limits and you should never feel bad about it! There are no judgments here because we have all been there in one form or another and understand your journey.

There is a lot of information about IIH and related diseases, treatments, etc on this site. Feel free to look it over and let us know if you have any questions or concerns. We'll do our best to help you through it!

Take care,
Julie
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Chelsea Fortress

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PostSubject: Re: Introduction   Fri Apr 27, 2018 12:12 am

Hi Julie, 

Thank you for the feedback and helpful information. A toolbox sounds like a brilliant idea! I'm honestly just happy to find this forum and to read other peoples experiences. It's already helped me and my pity party. 

You sound like a trooper, you go girl! Looking forward to exploring this site and information so more. 

Thanks, 
Chelsea
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PostSubject: Re: Introduction   Fri Apr 27, 2018 5:48 am

hi Chelsea;
I got better after jaw surgery, although before that I could not find anything that would help reliably.  I could not tolerate the medication.  the only thing that works is managing my obstructive sleep apnea which was virtually undetectable.  so it doesn't have to be even moderate sleep apnea, just mild apnea can do it if you are prone.  this may actually be the cause of your persistent headaches.  I am just very skeptical about diagnosing migraine in an IIH patient.  I think it's a cop out, that's my opinion.  I thought I had migraine my whole life and my headaches fit the definition but after my ICP dropped from 23 to 14 I don't get "migraines" anymore.  so, it's hard to answer your question of whether you will get better or linger.  many people linger.  I am not perfect by any means, just better, although I have many other problems.  some people find the answer and get better.  a change in diet.  losing the last 5 pounds.  I had symptoms for many years before I got diagnosed, and I know now that I went in and out of remission based on things like taking the right vitamins, having a thyroidectomy.  but the older you get, little things like vitamins and diet stop working.  I believe this is because of tissues sagging in the throat and the effect on sleep apnea and on jugular venous drainage.  
I am sorry you are struggling right now, I hope you feel better soon.
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