# A total mystery



## BusyBee (Aug 7, 2010)

I give up. So, nearly two years ago I had my first ever spell of migraines, from which it appeared, I developed this horrendous DPD (I have to classify it as a 'disorder' because it lasted longer than 6 months) however I am unsure whether now to classify my migraine as such because the definition of 'migraine' is 'symptomless between attacks'

Sooo, its taken me nearly two years to get over a migraine, and I've still, by the looks of it, got a long way to go. Appearently you should recover from a migraine in 2-4 days.. no wonder I've spent all this time and £££ on trying to work out what the damned hell this was all about.

I've had water tested for lead, I've measured levels of radon gas, I've checked piping, paintwork, diet, attitude and lifestyle. I've had brain scanned, heart and neck scanned. I've prayed and I've begged and I've screamed and I've wept.

In total, after seeing about 12 different doctors, 5 specialists, a nutritional thrapist, a homeopath, a psychotherapist, and numerous cranky know-it-alls, despite being officially and unofficailly discharged because I'd well and truely stumped all of them, I have to conclude that I am completly round the U-bend, despite possessing a strong inner security that, as far as I was aware, all my faculties were intact.

Then I meet the 'woman' doctor who deals with family planning and she refers me to the endocrine dept.. back to my second home the hospital again! This time I no longer need to look at signs to know where I'm going.

So I get on here, and bat on about hormones. To find out, again.. oh you guessed it.. theres nothing wrong with me!

So I am hanging up my boots. Thats all I have to say.


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## kate_edwin (Aug 9, 2009)

You say there's nothing wrong, is that your opinionmor people here and dr's ? 
There is a disorder where you can experience what feels like physical medical conditons but they're caused by your brain and it won't show up in medical tests


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## BusyBee (Aug 7, 2010)

kate_edwin said:


> You say there's nothing wrong, is that your opinionmor people here and dr's ?
> There is a disorder where you can experience what feels like physical medical conditons but they're caused by your brain and it won't show up in medical tests


I have no idea. Clearly there is something wrong, I'm a believer in science, I do not think one can 'imagine' this acute and bizarre sensation. But I will never find it, not with the tests they can do. Time is my only hope.


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## kate_edwin (Aug 9, 2009)

Have you had a neuro work up? I'm lucky to have a neuro opthamologist. Are the "migraine" symptoms 24/7 or are there breaks? There is actually a condition where you're stuck in a migraine for an extended period of time, status migrainus ( dunno about the spelling) , I very often get aura type symptoms without any headache, gets a little confusing. I'm really really glad to have a very experienced and vey open minded neurologist


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## BusyBee (Aug 7, 2010)

kate_edwin said:


> Have you had a neuro work up? I'm lucky to have a neuro opthamologist. Are the "migraine" symptoms 24/7 or are there breaks? There is actually a condition where you're stuck in a migraine for an extended period of time, status migrainus ( dunno about the spelling) , I very often get aura type symptoms without any headache, gets a little confusing. I'm really really glad to have a very experienced and vey open minded neurologist


I was referred to a neurologist however he discharged me, claiming that migraine is vascular and I did not have any neurological problems. He explained that my symptoms were what he calls, 'Alice In Wonerland Sydrome' and that it would wear off in time. Basically he shrugged his shoulders.

Since then I have looked into Alice Syndrome and I think he has misinterpretated my description of symptoms. I would say my predominent symptom is DR, a feeling that the world is floating and un-solid. Flickering vision, and visula snow cloud my vision, but yet, my vision is clear. (You've read it all anyway, we are in teh right place!)

It is 24/7. It had lessened in two years. I rarely get the feeling that I no longer exist, however I am very aware and have been ever since the onset of such a bizarre symtptom, that I am seeing the world from two tiny holes in my face.

Sometimes its as if my body realises this and gets a bit confused.. when I talk my brains wired get a bit tangled and it says, 'Was that me?'.. 'Who am I?'

But why, I will never know.


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## Timer (Feb 10, 2011)

Hi BusyBee,

I was wondering how you were getting on, good to hear from you, not so much that you haven't managed to find any answers yet.

Your symptoms were always very similar to mine in the sense of more DR and vision related issues.

Have you checked out adrenal fatigue? This is the latest route I'm going down. I remember you saying you went through emotional trauma, this can raise your cortisol levels and effect your adrenal glands. Only tests that will pick it up is saliva despite the doctors trying blood tests.

Heres a few links - interestingly in the first wikipedia link for 'burnout' Step 9 of this is Depersonilsation.

http://en.wikipedia.org/wiki/Burnout_%28psychology%29

http://www.naturalnews.com/024985_cortisol_blood_fatigue.html

Im similar in knowing how I feel in my body and that this feels 'physical' (if I can say that), almost as if something else has triggered it, I don't believe to this day I have just woke up and my mind and thoughts are just dpd'ed randomly...of course I could be wrong, but thats not how it feels to me.


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## BusyBee (Aug 7, 2010)

Timer said:


> Hi BusyBee,
> 
> I was wondering how you were getting on, good to hear from you, not so much that you haven't managed to find any answers yet.
> 
> ...


Hi again, I certainly agree with you on that last paragraph. Interestingly, adrenal fatigue was one of the first things I considered, however this was not picked up by doctors. Maybe this is because you can only pick it up on saliva test?? I should enquire.

Don't get me wrong, I feel distraught about the level to which my quality of life has diminished due to this whole episode, however there is only so many times one can bang their head against a brick wall. Days like today however, when I feel really rough (due to having a lie in until 10am), nauseous and 'closed in', I do get fearful that I just have to learn to live with it. It seems that a significant proportion of sufferers on this site were victims of childhood abuse and emotional trauma.. although I was adult at the time of my experiences, I am afraid that I too have succumbed to this permanent and intolerable suffering. However part of me feels that, like you, there must be some physical element that can be resolved.

Just fancied digging out some of that creative writing there







Haven't done that in a while, partially because my journalist grandfather taught me to write for newspaper, and partly because all my hobbies have been pushed aside by this totally consuming matter of great importance.


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## Timer (Feb 10, 2011)

BusyBee said:


> Hi again, I certainly agree with you on that last paragraph. Interestingly, adrenal fatigue was one of the first things I considered, however this was not picked up by doctors. Maybe this is because you can only pick it up on saliva test?? I should enquire.
> 
> Don't get me wrong, I feel distraught about the level to which my quality of life has diminished due to this whole episode, however there is only so many times one can bang their head against a brick wall. Days like today however, when I feel really rough (due to having a lie in until 10am), nauseous and 'closed in', I do get fearful that I just have to learn to live with it. It seems that a significant proportion of sufferers on this site were victims of childhood abuse and emotional trauma.. although I was adult at the time of my experiences, I am afraid that I too have succumbed to this permanent and intolerable suffering. However part of me feels that, like you, there must be some physical element that can be resolved.
> 
> ...


A saliva test can be done at different times of the day and can see coritsol levels, rising and dipping and see if it falls into line like it should. Blood tests cannot do this. Its definately one worth looking into.

Theres also a test you can do but shinning a light into your eye after you've been in the dark.

Check it out on youtube here - 




It doesn't look the most convinicing in terms of accuracy but its somewhere to start.

Having to learn to live with it, even a year down the line I am still in hope (possibly denial) about things, I don't believe we are FAR off from being normal despite how horrible this feels. For instance, my dp always came up after a heavy nights drinking, this subsequently left me with an 'off' feeling which I would describe as the same as what I was going through now 24/7. The next day after even having a few beers I could no way go to work and operate normally, I would have to have a day off, so therefore restricted my drinking to weekends only....thats unusual, like I wasn't hungover but just felt I couldnt think, had brain fog, couldnt concentrate properly (all the things Im suffering from now). Not knowing what it was I put this crash down to just suffering hangovers worse than others. I would go drinking on the weekend with my gf who is half my size, and drink the same amount of her and she would spring out of bed and head to the shops, I would crash and burn for a minimum of 12 - 24 hours, again strange. Well as I dug deeper it appears alcohol raises cortisol levels by quite an amount and if you are on the edge of adrenal fatigue / exhaustion it would lead to that crash on withdrawal of alcohol. After a while your adrenal glands can take no more of this pressure from truama and elevated stress response and flat line, leaving you lethargic, brain fogged, awake at nights and not able to wake before 10 - 11am, crashing in the afternoon and picking back up in the evening etc. At least this is my understanding of it.

The alcohol story is specific to me I guess however I dont think adrenal fatigue (if it is what I have) is at all, doctors dont take it seriously or even explore the possibility, not the most is known about it and its brought on by truama/stress and brings about symptoms similar to and also described AS dp. I'm not talking about a stressful day either, my truama was over the period of 9 months, day in day out, no escaping it, nothing else on my mind...of course my body would react to that.

I've never been anxious / depressed once in my life before, nowhere near and how I just woke up one day like that and I'm expected to believe it just happens to some people without any prior reasoning is silly in my eyes.

I dont think its 'take a magic pill' stuff, but I do believe certain supplements which target the adrenal glands could be beneficial, also understanding what to do and what not to do if that is the condition.

I'm going with it for now, its the thing that makes the most sense IMO, and in my case.


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## kate_edwin (Aug 9, 2009)

its not permanent, if you get treatment, since you've tried medical, it might be worth it to try a psychotherapist, one who works with dissociation if yo ucan


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## BusyBee (Aug 7, 2010)

kate_edwin said:


> its not permanent, if you get treatment, since you've tried medical, it might be worth it to try a psychotherapist, one who works with dissociation if yo ucan


I was referred to a psychotherapist however she discharged me because after an assesment decided this was most definitely 'physical' and that I had no emotional or mind issues.. I'm not disregarding your suggestions even though its looks as if I am, and I am appreciative of your replies, however I guess I wrote this post because I have pretty much expounded every possibility.


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