A 6 Year Trip Through My Own Personal Hell
It has taken 6 years to get a diagnosis. While I sincerely wish it had been far less, I am eternally grateful to be at this point.
If you are having massively painful headaches that no doctor can seem to explain, please keep reading. I am using the 6-year marker, though there were incidences of this feeling popping up sporadically beforehand. It realistically could have been a few years longer.
The Hemicrania Continua Headache – What I experience
- Pain in just one side of your head (it does not switch)
- It comes on suddenly and is severe
- Pain is behind the eye and can feel like a fork is being jammed into your eye socket and brain from the inside
- Your eye on that side of your head swells, becomes red and streams water
- Light exposure hurts (but only in that affected eye)
- Pain can range from intense to wanting to blow your own head off to get relief
- You may also experience eyelid drooping
- Pain is present 24 hours a day for a minimum of 3 months
- Relief is only found through medication or sleep
- Runny nose
- Nasal congestion
This headache would wake me up in the middle of the night with head pain that felt like an ice pick was trying to crack my skull open like a coconut by way of my eye socket, usually, 2 to 3 am. I would get up, stumble to the kitchen, microwave a heat pack, or use ice, take 800 mg ibuprofen, and for a while Fioracet in combination.
I had tried every over-the-counter medication available for pain and allergy. Tylenol, Excedrin, Advil, Motrin, not to mention every available allergy medication. Because of the watering eye, I believed, as did a multitude of doctors including allergy specialists and ENTs, that my issue was allergy-related. Singular, Xyzal, Allerga, Zyrtec, Claritin, Alavert, Pseudoephedrine, and so on. The only thing that offered any relief was pseudoephedrine. (Advil cold and sinus in particular). Over the years I took so much of that I feel lucky to have a functioning liver and I should have bought stock in the company.
The question of what was happening was a mystery.
No allergy medications worked to help, and the worst onset of this headache lasted over 2 years straight.
The headache in my case was combined with a badly deviated septum which was discovered in the process of trying to unravel this at an ENT visit. It was suggested that I have a septoplasty to correct it so that I could breathe better, stop persistent sinus infections, and hopefully get rid of this headache.
I put of the surgery for a very long time as they were not at all sure it would cure the pain and the very last thing I needed or could handle was more pain and suffering during a recovery process.
In this journey, I also discovered that I was positive for glyphosate exposure. (Roundup). Because of this, I completed a 10-day neurotoxin liver cleanse. At the end of the 10 days, my headache had cleared! I was so happy. Slowly, over time, the eye started watering again, the pain would creep back in. As it wasn’t as clearly defined as before, I wrongly assumed this was allergies.
I had one headache combined with a sinus infection just before the pandemic hit that was so immensely painful, frankly, I am lucky to still be here alive to write this…
Shortly after that I did go ahead and have the septoplasty. Which was immensely painful and a very hard experience, but the outcome has been fantastic. I can breathe freely now and am very glad I had it done.
Yet even after this, the symptoms began to come back………………….
Disappointed, let down, sad, and frustrated don’t even begin to explain how I felt.
All that pain and expense and for what? So that I could breathe a little better?
Again I went to the ENT. This time this doctor said something different. He said, if no allergy medications work, maybe it’s neurological.
So, I set off to find a neurologist.
Keep in mind I was brought up in a home where holistic was the ONLY health service type we used. Up till this whole debacle I had never even had a blood test let alone used all these medications. Knowing what kind of doctor to go see on all these things was very foreign to me.
In finding a neurologist and explaining all of this he immediately said “I think you have Hemicrania Continua. I would like you to try a 2-week trial of Indomethacin. That is the only medication that works on this disorder. If it works, we have our answer. If it doesn’t, we will have to go from there.”
Within 2 days every single symptom is GONE.
2 Weeks later, I feel GREAT! I am headache free.
Diagnosis confirmed. Hemicrania Continua (episodic)
The night of the final diagnosis I cried – for once, tears of joy, of release, of freedom from pain. I couldn’t stop. I am getting teary eyed even writing this now. This has been massively traumatic and to have it over with is a life changing dream come true.
I am now on a schedule of Indomethacin for the next 6 months and the hope is that after that time it will simply be as needed. While there is no “cure”, the treatment is very successful. If you think you may have this find a good neurologist who will work with you.
I am writing all of this out because I wish I would have found a blog like this at some point in my journey. I hope it helps someone who is out there suffering right now.