I was diagnosed with Hydrocephalus in 2016, I was 32; I am coming up on my three year anniversary of my first brain surgery.
I wont go into detail on my medications, because I don’t think that’s helpful; but I will tell you that I do have daily chronic headaches. Yes, I have a headache everyday.
The headaches are usually worse when I wake up because I have positional headaches, I do have an adjustable bed, so the head of the bed is raised, but I just can’t find the sweet spot. The headaches tend to get better during the day after I have been up for a few hours, because I have been upright.
My shunt has been adjusted numerous times, (I do have an adjustable shunt, so it’s adjusted with a magnet) but I don’t know if travelling or if other magnets nearby make my shunt get out of whack or what….but it’s literally the worst, because after I think I have it at the perfect setting, after about a month or so, something happens and I am right back to have headaches everyday.
If you don’t already know this, there is no cure for hydrocephalus, and the only treatment is brain surgery, or someone messing around with your head in someway.
2. Let’s Talk POT
I take medical marijuana and I love it; to be honest it’s the only thing that helps my pain. Nothing takes away the pain of a hydro headache, because nothing CAN help but the drainage of the CSF fluid, but I am not having another brain surgery unless it’s ABSOLUTELY necessary.
- CBD – is the type of cannabis that will NOT get you high and it has ALL the benefits of healing your body. CBD is now legal and you can take CBD in numerous forms; such as topically (lotion), Orally (tincture), edibles (gummies), or you can vape.
- THC – is the type of cannabis that will get you high and in some states you do need a medical marijuana card. Just like CBD, THC offers the same way to ingest the product, and you can also buy flower (bud) and you can do other fun stuff like dab with your bong. *I personally don’t have a bong…but if I did…I would be dabbing ALL DAY.
There are plenty of websites that offer CBD products; just remember that you may not feel the effects of CBD right away. It does take around 30 days for CBD to build in your system.
I take both CBD and THC and I do have my medical marijuana card. I would recommend talking to your medical provider about the benefits of medical marijuana.
3. How Do I Manage My Condition?
I mentioned that I was diagnosed with hydrocephalus three years ago, right?
Before I was diagnosed, I did yoga about five or six days a week, I had a pretty active social life, I liked to do stuff (whatever stuff was).
Now, I am tired ALL the time; I can’t do yoga anymore, people from that time aren’t in my life anymore because they don’t understand what this condition is and what it means.
My life is different now. Yesterday I had a headache so bad I couldn’t get out of bed until almost 1pm. I know I need to get out of bed because I will feel better once I am upright, but everything hurt, my head was just pounding, pain just radiated throughout my entire body.
Usually my headache pain is okay to manage. I can just get up and go on with my day, but yesterday…it was almost “do I go to the hospital or not?” These are the questions I have to ask myself now. This is my life and it’s lonely as fuck.
Botox has helped – I get this done at my neurologist office
Diet change has helped – Paleo (Dairy and Wheat and HUGE factors in headache triggers)
Light Exercise has helped – Walking, light weight training
Stress and Anxiety are also factors in headaches; (like most in their 20’s and 30’s.) trying to find ways to manage stress is also something I am trying to figure out.
4. Get Yourself a Good Neuro Team
If you have a hydro or if you’re like what does she do for treatment?
I see a few people and I really like all of them; they are always there when I need them.
- My Primary Care Physician – I see him every three months
- My Neurosurgeon – I see him every 11 weeks for botox
- My Neurologist – I see him every six months or if I have issues
5. What could I be doing better?
Exercise and a better diet
Consistency is key. The Paleo Diet is designed to heal through food and I really think it could be beneficial for someone like me who not only has hydro, but also has some other ailments, to really consider what I am putting into my body.
Exercise it always important. It’s important to move your body. I have to do a better job at taking care of my body. Even though I might be tired, I need to push through and teach my body to work through the pain.
For all those suffering from pain, you’re not alone. There are so many of us out here.
Don’t give up.