OUCH(UK) Organisation for the Understanding of Cluster Headache

Donate

Helpline

01646 651 979

overseas +44 1646 651 979

Last week I responded to an Indomethacin injection test.

3 posts / 0 new
Last post
#1 Sat, 28/04/2018 - 00:22
Landon
Offline
Last seen: 1 week 4 days ago
Joined: 31/03/2018 - 16:40

Last week I responded to an Indomethacin injection test.

Last week I responded to an Indomethacin injection test. It worked for about 40 hours. It was the first time I could feel my face in an almost normal sense in at least 4 years. I don't really remember when the pain first began to burn relentlessly. The first sharp stabs appeared when I was about 25 (43 now) and were sparsely separated. Like a knitting needle being pushed forward from behind the left eye. I had to leave work early when it happened. The doctor prescribed paracetamol. We tried some other things over the years, Sumatriptan I think. Nothing worked. For unrelated reasons I lost my job, entered a dark place for a while. A few years later (33) I was encouraged to do an art degree. It became noticeable to other students that I kept clutching my face and I think I was still experiencing jabs behind the eye, but more frequently. My memory is not fantastic so I would need to check medical notes. I had very little understanding of what I was experiencing and I had placed full trust in my doctor. Following the recommendation of a peer I made an appointment with the Migraine Trust (2009), and tried a couple of other drugs such as Amitriptyline which seemed clear up the eye jabbing pain. But the throbbing in my face remained. It would peak over a few days accelerating from a burn to a unbearable boring or sharp twisitng stab. It's hard to recall if the periods inbetween were fully remissive or how long they were, but they were eagerly welcomed. I finished my degree and continued to complete my masters in 2014. In my last year of my postgraduate the pain seemed to dial up a few notches and has remained unabating ever since. About every sixth or seventh day it cools off to a mild ache. 3 years ago with Permitted Work rules I started teaching at a university for just one day a week. Without any experience it was a terrifying leap but an opportunity I enthuisiastically embraced. My intention has always been to increase my working days but it's been tiresome battle competing with the pain. I'm now applying for PIP so I can have more flexbility and security with work. I have been rejected twice at the mandatory reconsideration stage but this time I am seeking an appeal at a tribunal. Today I realised that my deadline had expired but managed to get a late appeal due to being in hospital for my Indo test last week. The drug worked almost immediately. Only a shadow of numbness and pressure sensation remained in the left cheek area. Ocassionally very mild brief aches tried to break through but I was virtually pain free for almost 2 days. I could think without constantly pushing my thoughts past pain. Conversation was a completely new experience. I really can't remember when things were so clear before. It was wonderful. I saw so many possibilities. Then the drug wore off. I was just finishing a lesson. I forced myself through the last hour then found a communal couch to rest on. It was as if a saw had been taken to my head and someone was trying to remove it. I hid in the mens cubicle and sobbed. It lasted 6 hours. At some point I managed to grab my bag and made my way home by train. It was a struggle to say the least. Things had returned to as they were before the injection with ferocity. I don't see my neurologist till August (I will try for an earlier date) but because  I didn't have a full 100% response to the medication the doctors are hesitant to prescribe the drug. It is thought that I am suffering from Hemicrania Continua with Ideopathic Stabbing and possibly some other form of migraine. I have a vague understanding of it all to be honest. I also creased over with crippling stomach cramps for approximately 5 hours soon after the injection was administered. On top of also having Peripheral Neuropathy pain in my legs and arms, the head pain is now unbearable. I really can't see this as any way to live without a solution or form of respite. I don't think I have the strength or mental capacity to battle PIP and everything else. Everyday the desire to let go gets stronger. There's a little bit of hope left I guess, but it's becoming so hard to hold on to it.

Thu, 03/05/2018 - 08:56
Dorothy
Dorothy's picture
Offline
Last seen: 9 hours 39 min ago
Joined: 19/02/2014 - 10:16

Hi Landon
I'm sorry you've been having such a tough time. I recommend that you ring our helpline for a chat about all of this. They will go through everything with you including whether your neurologist is a headache specialist. Indomethacin is effective but known to be harsh on the tummy and often something to protect the stomach is prescribed. Don't despair, if you ring our helpliners they will understand totally what you are going through and can give you invaluable advice and hope.

All the best

Dorothy

Mon, 14/05/2018 - 21:17
Landon
Offline
Last seen: 1 week 4 days ago
Joined: 31/03/2018 - 16:40

Hi Dorothy,

I have previously spoken to Liz and Val who have been very encouraging. The attacks are so regular that it is difficult to reply immediately. I had to prepare a report for my neurologist, who is a head pain specialist at the NHNN, as well as applying for my PIP appeal which was late. The specialist nurse has been in contact and is seeing the neurologist this Thursday to discuss my case. I'm hoping for some good news. I also need to get my head around the PIP appeal as it's a little overwhelming. I will contact the helpline this week.

Thank you

Landon

Login to add comments

© OUCH(uk) 2018 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 4t339368