Hello! Not sure why I haven't reached out to the online community for so long but on impulse today I decided to go ahead and create an account.

I'm JC, 21 years old from London, United Kingdom. I have been fighting chronic cluster headaches since I was diagnosed back in 2011/2012. Like many I'm sure, I went through a plethora of misdiagnosis before actually hitting the mark. I believe I have been extremely fortunate to be referred to neurologists that fully understand our condition; first to Dr. Tim Young at The Whittington Hospital then further onto Dr. Manjit Matharu at The National Hospital for Neurology & Neurosurgery. 

At first my clusters were episodic in nature, and even then it was a nightmare. One day however, awaiting the saving grace of a remission, it just didn't happen. And now, four years down the line I'm still fighting against the beast. My headaches in particular are a major pain in the ass. Although the frequency and timing of the headaches have changed due to medication over the years, I have always had my headaches between midnight and noon. It's almost like something is taunting me to force me experience everything at night.

Unable to sleep when I should sleep, then sleeping when I should be awake. As most of you can imagine, society doesn't agree with my day being flipped around. This has undoubtedly had an effect on what I should have done; finish my studies and move on to university. Instead I wait each night, to fight the fight. Then, exhausted both mentally and physically fall into a much needed sleep, only to wake to a new "day" of cluster headaches. I remember before I had medication that worked, I used to have days chained into each other where I would wake to cluster headaches, fall asleep from fatigue after the bout only to be forced awake by the next bout. I would spend days locked into these headaches neither eating or talking to anyone (the longest being 4-5 days).

The depression and anxiety I have pulled through in the short few years with cluster headaches has, as much as I dislike to admit, broke me. I can account two different times where I have attempted to commit suicide. But through all the horror and pain I was experiencing, I realised one simple fact. I didn't want to die. How amazingly resilient, or stupid, we as people are really dawned upon me that one day. I was going through so much hell and I still couldn't bring myself to properly end my life. There was once when I was embarrassed to acknowledge how fragile I had become, but now I'd like to say a stronger person than I used to be. My bravado falls slightly short of all you guys who have managed to deal with this for so much longer than I have though!

Enough of my sob-story though. Currently I have 6-8 headaches a day, lasting 30-60 minutes between 1:30 am and the last at 8:00 am (there are variations dependent on which day of the week it is). This I would say, is a 50% improvement on what it used to be – before all the medication and stuff.

I have been taking Verapamil 960 mg daily since 2012. In addition I am still using 2 Imigram injections (subcutaneous sumatriptan injections) a day and have 100% 15 lpm medical oxygen with a non-rebreather mask (though oxygen was effective initially it now has no effect on my cluster headaches). 

Other medications I have taken: 
?: Zolmitriptan 2.5mg :Ineffective
?: Almotriptan 12.5mg :Ineffective
?: Indometacin 75mg t.d.s. :Ineffective - To test for a particular condition "similar" to CH and very effective at treating it
? 2012: Pizotifen 1.5mg q.d. :Ineffective
? 2013-November 2014: Topiramate 200mg b.d. :Initially highly effective
? 2013-October 2014: Gabapentin 1200mg t.d.s. : Partially effective in reduction of frequency of attacks
March-September 2014: Melatonin 15mg noct. :Ineffective
November 2014: Lithium 300mg b.d. for 2 weeks :Ineffective, side effects nausea and vomiting.
Feburary 2015-June 2015: Sodium valproate 2g daily :Ineffective
? 2015 for 2-3 months: Pregabalin 300mg b.d. :Ineffective

I have also tried greater occipital nerve block injections and multiple cranial nerve block injections with temporal partial improvement. In 2014 I started going to the hospital to have IV DHE to surprising effectiveness – complete and utter pain free while having the infusion with further residual benefit for another week after being discharged. While short-lived and only able to go in a few times it had helped greatly at the time to take a "break". When it comes down to alternative treatments, I have tried acupuncture and Chinese reflexology (head/foot/back). *Also tried Vitamin D3 regimen for a few months a few years back albeit with little success (thanks for reminding me Rumeke).

In January 2016 I went into hospital to undergo an operation for the insertion of a Sphenopalatine Ganglion (SPG) stimulator. I began stimulating it sometime during the middle of this year and so far have seen a 20-30% improvement in both severity of pain and frequency of attacks. I have been notified that deep brain stimulation surgery is still on the table if SPG stimulation ceases to be beneficial but I am hoping that I will continue to see further benefit. 

I realise I left out talking about the actual pain and headache symptoms but this is already longer than I thought it would be! I could write an essay on cluster headaches but I'm trying to keep it short – if this is what you could call short. Now as I am finishing to write this I still am unsure what I am looking for by telling my story. Being a cluster headache sufferer can be one of the loneliest feelings, perhaps I just want my story to be out there among all the rest.




*Edit: added Vitamin D3 regimen   

As the lovely Rumeke says, JC, you're no longer alone.

Welcome home.

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Thank you <3.

Hi JC, sorry you're here but glad that you've found CH.com
We all understand your pain and the horrible waiting for the pain to come.
You mention that you have tried the D3 regimen but had no success.
I would suggest that you try it again, there has been additions and changes to the D3 regimen in the last couple of years.
It is working for over 80% of people who take it.
There are good websites in UK where you can buy all the supplements needed, alternatively, iherb.com in the U.S is also a great place to shop, the postage costs are  low if keeping the packakges below 4lbs weight.
Batch, the creator and designer of the D3 regimen has come up with a very efficicent loading schedule that enables the rapid rise of D3 in our body and therefore allows us to reach pain reduction or pain free status quicker. 
Ask all the questions you want here and stick around, this is a great place with a great bunch of poeple.

All the best

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Thanks! I've gotten a pm from Batch and I'll get round to reading up on it. I hope you'll find a way out of this hell-hole too!

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I'll definitely take a good look at the D3 regimen again. I'm sincerely happy to hear so many people have found pain free days from it. Oh, and thank you for the welcome!

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Hello! Whilst I have never personally asked my neurologists, I do believe they have taken steps to rule out CH-like conditions. I have undergone an MRI brain scan with both neurologists from the get-go and a Dyna-CT (angio) scan at the start of this year. I can remember being heavily evaluated by Dr. Matharu's team after being referred (which I assume was to confirm the diagnosis from my first neurologist). It was only after those steps were the more invasive surgical options put on the table.

Aside from what might be circumstantial evidence, I can recall talking to my neurologists about conditions that could mimic CH but it is all really a haze. During worst periods of my CH nothing mattered, I was dragged to and from hospital like a zombie, I hardly managed to stay awake through most of it! I can't recall how many times I've fallen prey to exhaustion in a hospital chair or transport. I am curious what they have and have-not ruled out so thank you for bringing this to my attention, lets see if I can bring it up during my next appointment.

Consider printing his and use to discuss options with
you doctors.

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