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Diagnosed with Sunct - Headache for 7 years

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#1 Tue, 13/07/2021 - 13:30
Jaynejordanrhodes's picture
Last seen: 2 years 10 months ago
Joined: 12/07/2021 - 14:07

Diagnosed with Sunct - Headache for 7 years

7 years ago i woke up one morning and thought to myself that I have had a headache for 3 months, why hasn't it gone? Plus it was getting worse.My headache was permanent it never stopped and always on the left hand side above my left eye.

The headaches started to get out of control plus I was suffering from early stages of the menopause so in the early days I I started taking medication, eventually after trying so hard to leave a normal life I had to leave work.

No medication would help and believe me I've had everything including amovig plus amjoy .Nothing helped also along with the constant headache I then began to experience stabbes, ice pick sharp headaches sometimes one a day or sometimes every couple of minutes.  My enemy was light-sound-sudden movement-wind-cold-sensitive to touch-stress. Most of the time I'm at home with no life at all, so that I do not aggrevate my illness.

I have visited hospitals and my first visit a neurologist told me that basically I was a drug addict--so he took my only medication I had (which did help a tiny little) and then I was sent home without any meds,-- anyone who as my condition would know what I went through. At that time I became very low and if it wasn't for my famIly then I would have ended my life--.  Surely ALL neurologists must be aware of this illness,if not why?  Plus doctors they just look at me puzzled and just think I'm this crazy lady who says she's got a permanent headache, they do not understand,most have no compassion and most are not aware of this condition.

After so many visits to hospital and the specialist headache doctor I then started to have treatment, injections, botox, acupuncture, oxegen, lumber punctures. Nothing seemed to work apart from a drug called pregablin kept the stabbers as I call them atleast manageable but I still have the permanent headache, yes controlled but making sure my lifestyle again did not aggravate it, plus after a severe attack the doctors upped the level of pregablin to 200g a day, which I think started to give me other problems elsewhere --

During my many scans they did find a benign tumour above the left eye, I think that's why my diagnosis as took so long because of this tumour because the neurologists think it's a co-incidence and nothing to do with my condition. However after being referred to Guys hospital London they have discussed my case with the neurologists at the Kings college and said if nothing else worked they would consider removing it--

My final treatments which are nerve blocks the first one up my nose and then if that doesn't work one at the back of my neck,they are on hold now because of covid but I'm told I won't have to wait too much longer. --

My reason joining you group is a number of reasons 

A  Is there anybody out there who as suffered like myself ?

B  How can I help making people and doctors more aware of these conditions, so that no more people are treated like myself ? 

C  Make people aware of the drugs steroids - pregablin and how difficult it is to come off them, which I've had to do because of other complications.  After nearly 3 weeks and finally the drug out of my body I'm extremely unwell and my headache plus attacks are at their worst.-- because I'm not on a high dose of meds. Plus having side effects from the withdrawal or the new meds doesn't help my situation 

But going to a hospital I know is completely a waste of time, they do not know, they do not care, to be honest know one knows how much pain I am in except myself and maybe someone out there who is suffering like myself.

If I could just have half an hour of relief from my illness PLEASE, I await patiently for my treatment in the meantime I'm still here -in pain - a live - still  waiting and waiting 

Thank you for taking the time and reading my post



Sat, 05/02/2022 - 11:13
Last seen: 2 hours 23 min ago
Joined: 26/02/2014 - 14:26

Hi Jayne,

Apologies for being so late to this.  Sadly your story is only too familiar having to wait such a long time for diagnosis!  For myself it took 18years!  SUNCT is one of the TAC's (Trigeminal Autonomic Cephalgias) which affect such small number of people.  GP's generally do not have enough training on headache to recognise the rarer ones, although you do get a few GP's that can!  General Neurologists mainly see epilepsy and if they see a headache sufferer it is usually Migraine, so again they do not have the experience or expertise unless they have specialised in Headache.

I am pleased you are now getting the help you need.  Yes, more awareness needs to be raised and this is what OUCH is about!



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