# One Year On...



## BusyBee (Aug 7, 2010)

As many of you know, before joining in the summer, a year ago I had my first ever 'visual' migraine' which was an experience I can only describe as terrifying. I'm sure you will all relate when I describe this illness as 'I never thought it would happen to me'.
This bizarre migraine was preceded by regular attacks, in a worrying three day pattern, and after the second one the DR hit and continued to hit harder and harder every time an attack happened. Eventually I was put on preventatives that worked to halt the migraine, but not the DP/DR.
During this first two week period I lost a stone in weight, I had constant shakes, pain above the eyes, pressure on the forehead, and of course severe DP/DR.
My job prospects, my boyfriend, nearly all my friends, my summer and my 21st birthday had disappeared in a flash. Although I made it to the party, just, dress hanging off my grey skin, it was not the 21st party I'd envisaged two months ago when I bought the dress and booked the hall.
I was virtually immobilised all summer. I was back and forth to doctors, in and out of hospital waiting rooms; I was given scan after scan, blood test after blood test: NOTHING.
DP/DR is more terrifying that pain, and incredibly frustrating. No known cause, many sufferers turn to the internet for ideas. We become self-taught medics, all searching for answers in a world so alien from what we've ever known. And it's a lonely world. If you had your leg in plaster and were happily looking forward to 6 weeks off work, bedside service and lie-ins watching Jeremy Kyle, people around you would be nothing but sympathetic. Trying to explain however that you feel as though you're 'invisible' only seems to attract an array or perplexed faces who seem to then change the subject instantly, and that includes the medics. I endured months of trips to doctors, trying various ludicrous descriptions ranging from 'flat and hollow' to 'ghost-like'. I explained to them how I felt as though was 'living dead'. Inevitably, they eventually referred me to Phych.
I turned up, eagerly awaiting help at last, to be discharged and told I 'was not mad enough'.
Eventually, I gave up trying, I gave up worrying. Time was the only healer.
If you are new to this I hope this helps you understand the healing process so that you are not so frightened, and if you are old to this site then I hope this gives you encouragement.
*Here are my theories:*
Stress induced (I was in an abusive relationship and it took me a long time to believe that stress really could make you this ill)
Lead poisoning (My boss and I both went sick at the same time after working there exactly a year together)
Adrenal fatigue
None of these were tested or proven.
*Here's what I tried:*
Homeopathy (suited to the individual)
Multi-vits
DMAE 100 mg before brunch daily.
*Here's what didn't work:*
Exercise, this made me feel as though I was going to pass out.
Homeopathy: Time was the side of the desperate sugar pills
Forgetting about it. How can you forget that your world is no longer three-dimensional? I had a full time manager's job, 3 horses to look after and a reasonable social life but it still took TIME. 
Sleeping and sleeping and sleeping hoping I'd wake up normal.
*Here's what did help:*
DMAE. I saw a real turn as clarity returned in certain lights etc after about 2 weeks.
Losing the fear: This takes time and everyone has their own time frame.
*Here's what I achieved:*
I wrote a book
I set up a business. DP made me plunge into things, as it can't get any worse right?
I learned a bit about medicine
And, I survived!
*Top Tips:*
DO say yes to things when you really want to say no.
DO Look after your body and feed your brain. Keep up the vitamins, drink a vitamin-balanced Slim-Fast when you have no appetite.
DO listen to music to relax and watch films that are funny/ light-hearted. Avoid any films that involve time travel or anything else that makes you question your existence. I watched one once and it made me feel decidedly peculiar.
DON'T Totally ignore your 'self'. Style your hair and wear makeup. No one can see your secret. (Maybe omit the make-up if you're a man or people really will think youve gone mad). You are still YOU.
DON'T expect too much of friends and family. Imagine if someone came up to you and said they felt the way you describe before you got ill. You'd think they were making it up! Don't upset yourself when they don't understand. That's what we're here for.
DON'T set a time limit or make plans. You will get better when you body is ready.
*My biggest fears*
My biggest fear point was the realisation that I did actually have DP/DR. I self diagnosed as my doctors told me it was migraine and would wear off after a few hours/days. DP/DR is often described as 'incurable' which is odd because nearly all cases resolve within days. We are the unlucky minority. However nearly ALL cases of DP/DR resolve eventually unless the cause is still present.
I was also very scared that I'd never recover. But looking back, was recovery process included a slight improvement about after every 4 months. Very slow indeed, but even after temporary relapses I'm back on that healing cycle.
I also kept asking, 'What if I've just got used to it?' No, not possible. You know when you're recovering because you forget the bad bits. They seem distant. Things seem more normal again. Your mind forgets bad things, like childbirth, like the bitter cold of winter. We are programmed this way for survival and reproduction. If you haven't forgotten, then you're not yet recovered.
*One Year on*
DP makes you take a step back and appreciate what you've got. And as you get better, I warn you that you will slip back into that self obsessed ungrateful drama queen that you maybe were before! But this a good sign. You'll never forget the lessons you learned. Now, I'm not cured yet. The room still spins sometimes. I still look at things in certain lights and think, 'is that real?'. I've still got floaters, blind spots, floaty hands and words that somehow don't belong to me. But I'm not scared anymore. I accept invites. I go on holiday. I go on dates. I've dug out my high heels. I'm not going to try any more medics, any more expensive therapies. I'm strong enough to get through this on my own now. I've grown up ten years in two, and the end is near.
I am twice the person I was a year ago, not half. And you will be too.


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## Cheryl (Dec 4, 2010)

I just wanted to say that you're amazing.


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## ValleyGirl (Nov 10, 2017)

I could have written this myself. Our experiences with recovery are nearly identical. I feel exactly the same as you and I am 1 year and 6 months into it. It's so encouraging to hear someone relate so deeply to how I feel. I'm so thankful that we both are recovering


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## wtheck (Mar 23, 2011)

amazing post!


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