Just a short note about this blog.

For timeline purposes, posts from 2008-2014 are summaries of significant happenings in those years. Please use the Blog Archive links to start at the beginning.

Past tense/Present tense language may change within a post, but those variances should not impact the overall telling of my experiences. I am Canadian, therefore, the spelling of some words (tumor/tumour, color/colour) may vary depending on if it's my wording or quoted text. I have tried to include both key words in the labels of relevant posts.

The blog contains medical terminology. I have tried to provide explanations or definitions when they occur. Occasionally medical images (nothing too graphic) are included to further explain or demonstrate.

Explanations and graphics link to original sources wherever possible with the exception of my personal photos.

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Tips and Tricks for Coping

There are internet memes all over the web for IIH, some are just witty sayings and some provide a bit of medical information.  I'm not going to post those here, if you're looking for that type of thing, check Facebook, or Pinterest.

These are things I've tried, some work for me, some don't.  All I can really suggest is keep trying until you find ones that help you.  I am not a medical professional, weight loss specialist or nutritionist, these are just my observations during my experience. Please speak with your doctor before pursuing!

Over the Counter Medications 

Primarily acetaminophen or ibuprofen, what ever brand and strength you tolerate best.  For me, one or the other doesn't work, but I do find minor relief if I take them at the same time.  Each have different ways of targeting pain in the body and can safely be taken together, however, care needs to be taken that you don't trigger rebound headaches from OTC analgesics.

Gravol - I have a lot of nausea and vomiting.  I add 2 50mg tablets 2x/day to my medication mix to help control. Occasionally I do have to resort to stronger prescription grade anti-nausea medication.


Personally, ice hurts me more than it helps, but for some it does ease the pain.


Heat was one thing I discovered really does have some benefit for me.  I have a number of microwaveable bean bags that I heat up as much as they safely can be, then I lay with my head and neck fully wrapped.  I usually do this after taking my OTC medication and then just rest for half hour or until I wake up.  I find with the heat packs, I have a tendency to doze off as the relief kicks in.

Massage Therapy

If there are visual disturbances from the IIH, then there is a possibility that the head is tilted or held in an unnatural position.  Massage therapy doesn't directly affect the pressure in the head, but it can certainly contribute to easing the aches and pains associated, and it just feels good!

If you decide to pursue Massage Therapy, get a prescription. In Canada, MT for medical reasons is tax deductible, and most insurance claims require proof that MT is not for pleasure. Also, invest in Magnesium sulfate, commonly known as Epson Salts.  A hot bath with 2-3 cups of salts after a massage does wonders for easing the stiffness and muscle pain experienced the following day.

Support Groups & Message Boards and Research

There are many of them out there, Facebook and Pinterest to name a couple sources, you can even try Google Search - IIH Message Boards to find something that suits you.  The boards typically are patients with IIH posting their experiences and questions. Some posters are family members of an IIH sufferer.

Keep in mind, many of the posts are one person's perspective. As Robert is frequently reminding me, the poster usually does not mention how they are coping with their daily pain and when commenting on a spouse or family members reaction to their situation they do not include the other perspective. 

IIH is a result of High intracranial pressure, however, if you have a shunt, medications are working overtime or you've had a lumbar puncture, you can develop low intracranial pressure, (usually self resolving).

Telling your doctor your headache is "bad" or "worse" doesn't give them many clues to work with. Learn to recognize your symptoms and how to best describe them to your doctor.  With dual shunts, I have learned to tell if my pressure is high (in my case constant swooshing noises, head feeling like it's about to explode) or low (head feels as if it's squeezing inwards, eases when laying down). Simple descriptions that help the doctor determine the best tests to perform or treatments to follow. 

Try to avoid becoming a CyberchondriacResearching a condition to become more knowledgeable can have its own pitfalls. Reading about medical stuff can sometimes cause a person to believe they have everything they read about, a condition known as hypochondria, when applied to the internet, cyberchondria is the term commonly used.

Remember:  Just because it's on the internet it doesn't mean it's true! 

Make sure when you research you verify the reliability of the post. Look for information from official IIH websites and medical professionals.  Blogs like this one and message boards have a tendency to reflect the poster's experience though I have tried to provide factual backup when possible.

I do have to share this one though, an interesting way to explain IIH and the daily effort it takes.  The Spoon Theory

Attitude! Keep positive for best results

I am often asked, how do you keep smiling, how can you be so cheerful? My best response to those questions is I just do or I have 3 very good reasons...Rachel, Rob and Krystal.

You learn to live with your condition and how you process each day is largely impacted by your attitude.  I was taught to smile through pain. It is difficult and some days are worse than others, but if you keep positive and make the best of when the pain is less it becomes easier for family and friends to be a little more supportive on the bad days.

I try my best to ensure that Robert knows how much I do appreciate him. I wouldn't be where I am today without him and my girls. On my worst days they have been there for me. Even Rachel at the age of 5 helps out. She has learned tasks like heating the microwave packs and takes great pleasure in being able to take care of Mummy! Rachel even will set up a spot on the sofa with a blanket and pillow, and sometimes her current favourite stuffed animal, as a spot for Mummy to rest, usually with her snuggled up.

On good days, I do what I can to prepare for the bad. If I'm making spaghetti sauce or any meal that freezes well, I tend to make a little extra and store it. On a bad day, Rob can pull something out of the freezer to heat and serve for himself and Rachel.


Distraction is sometimes the best way to avoid focusing on the pain.
I watch TV when I can, sometimes the action is just too much for me to keep up with visually.

I love to read - not an easy thing when you have vision issues and headaches, but if I can get into a good book, I can forget about my head for a bit.  I have found that I do best these days with an e-reader.  I use the night setting (dark background/lighter text) and find that there is less strain and glare on my eyes.  I also increase the size of the text and when my right eye is really acting up I usually lay on that side with my eye covered and read with my left eye alone.  All things not possible to do with a traditional book. 

I cook and bake! - TV led to watching a number of cooking shows both informative (how to) and reality (Masterchef, Cake Boss and Hells Kitchen for example).  Watching a cake baked and then decorated in amazing ways got me thinking, I can do that! (at least on my good days) So, in October (Thanksgiving in Canada) 2013 I made my first custom cake. 


I can't say a whole lot in this area, other than this illness can and likely will create financial difficulties.

Medication costs can be high, my prescription anti-nausea runs $300.00 a month, another medication, over $800.00 for 3 months.  If you have insurance coverage to help with the cost of medication it truly is a help.  Fortunately, in Canada, I have provincial health insurance, so visits to the doctor, surgical costs and hospital stays are covered.

I have seen many different approaches to the financial difficulties people with long term illness have. Some rely on family and friends for help, some use fundraiser campaigns to help cover medical costs, and for some, there are federal and regional disability plans dependent on qualification criteria.

When my illness started, I was working, but my employer did not provide extended health benefits, meaning when I was no longer able to work, I had no income source.  After a year of being unable to work due to my symptoms, I applied for federal disability (Canada Pension Plan) but was denied.

Best advise I can offer, don't take no for an answer, and find an advocate to fight on your behalf. I was in no shape to fight for my claim, and the window for benefits closed in 2012, this was prior to a diagnosis, the end result being my spouse, Robert, is the sole support for our family.

We are fortunate, he has a decent job and manages to meet our daily needs with a little juggling.  We have regular household bills, rent, and transportation expenses.  We both have student loans incurred before I became ill. To reduce costs, we cut back on luxury items like home phone, cable TV and date nights.

We do have an active 5 year old who requires additional activities outside of her school day. Most kids are involved with soccer, dance or hockey, Rachel's choice has been riding lessons, but that gets into the extra expense category and while we use clearance sales and donated items for her equipment it is still not always feasible.

While I have not resorted to fundraising campaigns for my own benefit, Krystal has created a fundraiser to help out with her sister's riding lessons.

Weight Loss 

Sample Portion Control Plate
One of the first recommendations following diagnosis of IIH is "Lose Weight!" It appears everyone has been told this at least once, including people who are in the proper weight range. A typical comment is "a reduction of 10% of your body weight can relieve symptoms".

You can find weight loss tips all over the web. The main thing that worked for me to reduce weight was portion control.  Downsize (use a salad/kids divided plate) and change how you view your plate, at least half the plate should be vegetables, the remaining half divided into your protein and starch. Keep in mind with a balance like this starch includes bread, grains, and high sugar vegetables like potato, corn and peas.

Candy and chocolate are 2 of my biggest pitfalls, but it is still possible to enjoy the occasional treat. Look in the diabetic section of your local store or pharmacy, you can usually find sugar-free snack items there. I suggest paying close attention to portion size listed on those packages.  Too much and the intestinal disturbances caused by them will serve as a true reminder for next time!

If you're looking for some vegan friendly choices, check out a friend's blog: The Apple Runner for a few recipes and ideas.

On the subject of weight loss, I was referred to a bariatric clinic in July of 2014, full details will be posted there. From July, to my first appointment in October I managed to lose 40 pounds.  I had lost another 15 or so by the next appointment in the new year.  In February 2015, I started on Victoza, a diabetic injection currently being approved for weight loss. Personally, I had more negative with this drug than positives, and I stopped taking it May 2015.

Weight loss does not work for everyone in resolving or easing IIH symptoms. I went beyond the 10%, having cut my weight by 33% and moving my Body Mass Index (BMIfrom 55 to 36.  I still have a way to go and while I feel better physically, it hasn't touched my symptoms.

Comparison of my weight 2011 to 2015
Approximately 100 pounds lighter!

Sleep Study

Sleeping is frequently an issue for me.  I can be dozing off on the couch while watching something on TV, then the minute my head touches the pillow, I can't fall asleep.

A sleep study can help determine if there are issues that need to be addressed.  Since developing IIH, I frequently break out into night sweats, waking up with my hair and pillow soaking wet. I currently don't have the results of my own sleep study, but the night sweats were noted along with difficulty in falling asleep.

Sex & Intimacy

Perhaps the hardest area to address and the one that seems to be least discussed, though sex and intimacy is not the least in significance even if it is the last thing on this list.  There does not appear to be much research into this area in conjunction with IIH, just a lot of comments and questions on message boards.

The old "not tonight dear, I have a  headache" has been the subject of jokes and quotes for years, but when you have IIH it almost becomes a nightly phrase.  Imagine being on the receiving end of that for 5 plus years.  No wonder the message boards are filled with posts like "My spouse is fed up!" or "My spouse left me!".

Fear of additional or increased pain, and/or hormonal imbalances can prevent natural processes from happening. Increased heart rate and even orgasm can create additional pulsating sensations/sounds in the head. Sexual headache can add to already existing pain.

IIH can cause a decrease in libido. Weight gain can cause body image issues. Weight loss has its own image issues including stretch marks and sagging skin.

Communication is KEY!

If dryness is an issue, talk about it with your partner, look into purchasing personal lubricants. Realize that additional time and effort may be needed to be comfortable or perhaps a change in the intensity of sexual activity is required.

If you have IIH let your partner know if something causes additional pain. DEFINITELY tell them if something is working! If your partner has IIH ask what you can do differently to bring intimacy back into the relationship before it causes a breakdown.