One woman’s strug­gle with a rare ill­ness that left her feel­ing as if her body was “ex­plod­ing with pain”.

Friday - - Society Living Leisure -

Life was look­ing rosy. I had just mar­ried Dan Dobson, af­ter eight years to­gether, was ren­o­vat­ing our house, and had been pro­moted to a se­nior role in charge of duty-free out­lets.

Then one evening I came home from work and in­stead of rush­ing to do ‘dam­age con­trol’ on Dan’s cook­ing as usual, I had to lie down. I felt drained, like I’d been un­plugged. It wasn’t like me.

I woke up the next morn­ing feel­ing fine, so I dis­missed the pre­vi­ous evening as a weird one-off. But over the next few days my teeth felt pe­cu­liar, as if they were crack­ling with elec­tric­ity. When it got to my day off I couldn’t eat, barely man­aged to drink, and throb­bing pain de­vel­oped in front of my ear and into the cheek­bone, si­nus, around the eye and across my fore­head. The whole right side of my face was pul­sat­ing with burn­ing pain. Dan, 34, kept bring­ing me painkillers, but they didn’t help.

I’d hardly slept and left for work at Manch­ester Air­port, UK, the next morn­ing in agony. It was as if my face was ex­plod­ing with pain, in­ter­spersed with what felt like light­ning spik­ing my skin. Speak­ing made it worse, so I hid in the of­fice, al­though the com­puter screen and light­ing sent red-hot-poker pain through my right eye.

“You should go to hos­pi­tal,” the night man­ager said, but I didn’t. In­stead I drove home and tried to sleep, but the pain was un­re­lent­ing. Even­tu­ally I ac­cepted I had to see a doc­tor.

In the hos­pi­tal emer­gency depart­ment I was given codeine, parac­eta­mol, ibupro­fen and blood tests to check for in­fec­tions, al­though the doc­tor said she was sure I had trigem­i­nal neu­ral­gia (or TN – see fact box over­leaf for more de­tails). She ex­plained that this is a ma­jor nerve misfiring, per­haps due to it be­ing com­pressed.

I was sent home with painkillers and a fol­low-up ap­point­ment. Sob­bing, I rang Dan and my mother, Larissa Hamer, who dropped ev­ery­thing to come and look af­ter me. I lay in agony as she and my hus­band watched on, help­less. It felt like hun­dreds of elec­tric shocks were rush­ing through the side of my face. I didn’t know what to do with my­self.

The next day I ques­tioned the di­ag­no­sis and called my den­tist, who told me it was point­less check­ing my teeth as my symp­toms matched TN.

My GP agreed with the di­ag­no­sis, and ex­plained that nor­mal painkillers don’t touch neu­ro­pathic (nerve) pain and pre­scribed Gabapentin (also known as Neu­ron­tin – usu­ally used to treat epilepsy) and said to slowly in­crease the dose. I de­cided to stick with my GP’s care rather than re­turn to hos­pi­tal.

De­spite in­creas­ing the drugs, the ‘light­ning’ struck my mouth when I spoke, ate, touched my teeth to­gether, drank tea, or for no ap­par­ent rea­son. Ex­cru­ci­at­ing pain could hit ev­ery few sec­onds, stop­ping me in my tracks. I couldn’t breathe or cry out, I just had to wait for it to pass, and that some­times took hours. Dan and Mum quickly recog­nised the signs ffrom my tears.

Des­per­ate mea­sures

AAfter five days I was des­per­ate so mmy doc­tor added Te­gre­tol (also known as Car­ba­mazepine – used ffor seizures and nerve pain) and handed me in­for­ma­tion about a ssup­port group, the Trigem­i­nal Neu­ral­gia As­so­ci­a­tion (TNA).

Two weeks later I could eat soft tthings and drink with­out be­ing crip­pled with pain. I was also sleep­ing bet­ter, al­though I still of­ten jolted awake when my face felt like it was be­ing elec­tro­cuted.

Un­for­tu­nately the med­i­ca­tion made me a zom­bie. I couldn’t work, so see­ing my des­per­a­tion to re­gain con­trol, my GP re­luc­tantly agreed for me to stop Gabapentin but con­tinue Te­gre­tol.

Chang­ing drugs was a mis­take. Within days in­de­scrib­able pain meant I was ad­mit­ted to Sal­ford Royal In­fir­mary’s neu­rol­ogy depart­ment. For eight days I un­der­went MRI scans, a lum­bar punc­ture and blood tests to check for a tu­mour, in­fec­tion, or

‘Ex­cru­ci­at­ing pain hit ev­ery few sec­onds… I couldn’t breathe or cry out, I just had to wait for it to pass’

mul­ti­ple scle­ro­sis. Af­ter rul­ing out any­thing other than TN, doc­tors tried dif­fer­ent drug com­bi­na­tions.

Leav­ing hos­pi­tal I was drugged-up again, felt dizzy, kept bash­ing into things and the pain was dulled but still there. Doc­tors wouldn’t say if I would ever get bet­ter, and I read that there was no def­i­nite cure. It was se­ri­ously de­press­ing.

The drug com­bi­na­tion pre­scribed was max­i­mum doses of Te­gre­tol, Pre­ga­balin (an an­ti­con­vul­sant), and Nortryptaline (an an­tide­pres­sant that can ease neu­ro­pathic pain).

Side ef­fects left me a mere shell, and six months af­ter the prob­lem started, my life had shrunk to sit­ting at home with my cats. It wasn’t safe for me to drive,

I couldn’t work and I’d lost my in­de­pen­dence. Af­ter do­ing some of my own re­search, I de­cided I wanted MVD (mi­crovas­cu­lar de­com­pres­sion) surgery.

While MRI scans hadn’t re­vealed nerve com­pres­sion, I thought it was worth a shot, and my GP re­ferred me to a top neu­ro­sur­geon at the UK’s National Hos­pi­tal for Neu­rol­ogy and Neu­ro­surgery in Lon­don.

I had to wait three dread­ful months for the ap­point­ment, in which an un­cle died, my mother had a stroke and Dan and I sep­a­rated for a while, as the ill­ness im­posed an im­pos­si­ble strain on our re­la­tion­ship.

A light at the end of the tun­nel

When it was fi­nally time for the ap­point­ment in June, an MRI scan showed a vein that could have been touch­ing the nerve, mean­ing the neu­ro­sur­geon thought it was worth try­ing MVD surgery. It was booked for two months’ time in Au­gust – a pos­si­ble light at the end of the tun­nel.

The sur­geons re­moved a piece of skull about the size of a coin from be­hind my ear to reach the nerve’s con­trol cen­tre (known as the gasse­rian gan­glion). They searched for dam­age to the myelin sheath – the nerve’s pro­tec­tive coat­ing – or for com­pres­sion from nearby blood ves­sels.

The aim was to lo­cate the prob­lem area and in­sert a tiny ‘buf­fer’ sponge. How­ever, my sur­geons found that the vein they thought was com­press­ing the nerve wasn’t caus­ing a prob­lem, nor was there any other dam­age. So they ma­nip­u­lated the nerve, aim­ing to stop it misfiring.

Wak­ing af­ter surgery, I was dis­ap­pointed at no im­me­di­ate an­swer, but still hope­ful the prob­lem would ease. I was ad­vised to stay on the drugs un­til Jan­uary, then with­draw grad­u­ally so the nerve wasn’t shocked.

By Jan­uary the pain had less­ened. I crunched my first ap­ple in more than a year and wasn’t left writhing in agony. I kept re­duc­ing the drugs, al­though each time at­tacks flared un­til the nerve calmed.

I’m now just on Te­gre­tol. I’m not cured, but I’m pleased with how far I’ve come, and the nerve may keep im­prov­ing for two years. I’m break­ing through the drug haze – sup­port from the TNA means I feel far from alone, and I’ve started piec­ing my life back to­gether.

Dan and I have been work­ing on our re­la­tion­ship and we’re thrilled that I’m now preg­nant. I see this as a new be­gin­ning – per­haps fate has shown me I must take a dif­fer­ent path.


Mar­ried life be­gan bliss­fully for Natalie and Dan, but Natalie’s sud­den de­bil­i­tat­ing ill­ness sent shock waves through their lives

Natalie says the med­i­ca­tion she took to treat the trigem­i­nal neu­ral­gia turned her into “a zom­bie”

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