Incremental change not curative ideas

I don't think I went to the OUCH conference this year in London with any thoughts that someone was going to present to us a cure for cluster headaches...I'm not that naïve.

Alongside all of the lifestyle changes asked of me by my neurologist, I have explored every pharmaceutical option I have ever heard of for cluster headaches, not only tablets but injections, nasal sprays, nerve blocks and infusions.

I have had surgery too but every little change we make, drug we add, dose we increase, injection in the face... they all get me a little bit closer to a pain free few hours a day... not a cure.

Professor Goadsby, the leading CH doctor, talked in some detail about the medications that are available and are in various stages of development. He stated that current medications are all very poor. I am inclined to agree with him 100%. But as  chronic intractable patient, meaning my particular brand of cluster headaches doesn't respond to existing treatment, of course I agree.

From my understanding though, none of these drugs were developed for cluster headaches... we stole them from migraine, mental health, cardio vascular medicine and epilepsy to name just a few. On a recent trip to hospital my medication list led a Dr to assume I had epilepsy, diabetes, Parkinson's, heart disease, bi polar disorder... I have none of them!

I don't expect to find something that eradicates CH from my life. I don't expect to ever have a pain free life... I want a cure and I want a pain free life but I am old enough and wise enough to know that its not going to be a possibility in my lifetime.
Ill stick with it, ill keep trying new things, adjusting the doses, enjoying the pain free moments it affords me.

Where I struggle most of the time is the unwanted side effects. Medication was once described to me as a beneficial poison. Ill credit my dad with these words of wisdom but I'm pretty sure he stole it!!

What I was probably most excited to hear at the recent conference is that there are medications in the development stages that will take away some of the side effects of the medication I am currently on. Rather they do the same thing as my current meds but without the complications.

I worry what the long term effects of my meds combo might be. No one knows when I ask them, it's an odd combination and I was fairly young when I started out on the journey with them. To know that some of these side effects may be eradicated is really good news... Maybe I'll be able to get my heart rate higher than 60!

Baby steps... Less pain, fewer side effects, brighter future.