PoTs & the Lightning Process

On Tuesday evening whilst having a look at member posts on the group I admin in,

a post popped up that deeply concerned me. Now obviously I only have this

members say so that this is the case, it may not be true or aspects of it may not

be true. However he alleged that a well-known UK doctor that many people pay

privately to see after getting nowhere with the NHS when they have PoTs, was

singing the praises of a clinical study that was using The lightning Process to

essentially treat / cure PoTs. My heart sank and if it is true, it has confirmed a

fear that a friend and I have shared for the last 4 years that research into the

treatment of PoTS in the Uk was moving towards a more psychological

rather than physiological model.

I am not naive enough to say that the mind does not play a role in health of

course it does. People with depression can manifest very physical symptoms.

I have found whilst dealing with anxiety and depression lately that my pain levels

are affected. On the days where I am really struggling my pain levels are higher,

when I am having a better day my pain levels are back to normal. Clearly mental

health and physical health are linked as they are all part of the whole system.

However to suggest a process that has many vocal detractors, that has had no

properly conducted medical trials that have been peer-reviewed or replicated

can treat / cure PoTs is just laughable. It’s like telling a person with terminal cancer

that thinking positive thoughts will cure them.

Now when you try to research The Lightning Process online it is very hard to

actually get any substantial information regarding what the process actually is.

I had to search for quite a while last night. Part of the problem is that those that

attend the courses ( that retail from between £500 -£750 for a 12 hour course

over three days) have to sign (allegedly) a non disclosure document. They are

also constantly told during the three-day course that sharing details of the course

with others will prevent them from becoming well. The lightning process up until

now has mainly been marketed at those with M.E, CFS, Depression, Anxiety,

OCD, and Multiple Sclerosis. The main website has fallen foul of the UK

Advertising Standards Authority and was forced to remove content that claimed

it had cured people of various medical conditions and that it had a success rate

of around 90%. From what I have managed to glean from online sources

( which I have provided the links for at the end of this post) it’s mainly based

on positive affirmations, cognitive behavioural therapy and emptying your wallet

of several hundreds of pounds. It uses a lot of impressive sounding terminology

such as neuro-linguistic programming (A discredited psychological therapy )  neuroplasticity

( changing pathways in the brain) and reducing Allostatic load (stress).

It sounds very impressive and when you are desperate, the sum

of £500 - £750 doesn’t seem that much if you are going to become well again

within three days. I say three days as many of the LP (lightning process)

practitioners claim that participants are well within three days.

From what I have been able to glean from some very limited research is that

it’s all based on breaking the cycle of negative thinking. So at its very basic level

its patient blaming, you are sick because you are trapped in a cycle of negative

thinking. The negative thinking pattern is causing your physical symptoms -

including MS, ME and now PoTs by the look of it, due to the fact you are

increasing stress on your body by continually activating your fight or flight

response. (http://lightningprocess.com/how-it-works/ ).

So for instance if you have the thought “ I feel terrible” you make the hand

signal to stop - catch yourself in the thought, you then rephrase it as in “I am

doing terrible” therefore making it your choice to be feeling that way ( see the

subtle language change that shifts the blame back onto the patient so even if

they claim that they don’t blame the patient the subtle change if language makes

the patient believe they are responsible for their physical state - what angers me

is there would be a national outcry if they tried this shit on with cancer patients).

You then tell yourself you have a choice to make you can choose to descend

into the pit ( where you allow your physical symptoms to take over your life

and continue with the negative thoughts and never get better) or you can

choose the life you love. Now what muppet wouldn’t chose the life you love?

Who wouldn’t want that in a heartbeat? However if you fail to respond to the

process you have effectively chosen to remain in the pit (of despair).

You also tell yourself positive affirmations such as “I am strong like a tree” or

“ I am a strong genius for choosing the life I love” as you visualise the choice

you have made. Sorry only one word for this Psychobabble. Can you understand

now why I am concerned that doctors who treat PoTs and Dysautonomia in the

UK are singing its praises?

A lot of research with PoTs has been around a faulty fight or flight response

so I can see why the leap has been made to the lightning process. As many

patients with ME ( I hate the term CFS ) have dysautonomia as part of their

symptoms, or possibly because many patients who were written off as having

M.E but actually have PoTs and EDS (and dubious claims have been made

about LP curing M.E), maybe these doctors decided that despite tilt table

tests proving PoTs, that somewhere deep within our subconscious we are

responsible for causing our own illness through a cycle of negative thinking.

If you aren’t offended at any level that it is being suggested that your negative

thought patterns are making you sick…….then there really is no hope for you.

The LP is so condemning of negative thoughts that to doubt or to criticise the

process is seen as a reason why you haven’t been cured. From what I have

read those taking part in the process are told to leave their analytical thinking

at the door. There is even a suggestion of a screening process before you are

allowed to attend the course. The practitioners claim that you have to be ready

to attend so this is why they conduct a home study ( a basic telephone interview).

Many of those who have spent the money to attend the course have

said that the interview is a test to see how compliant you will be. Those

who have attended the course and failed to respond to the process are quite

often told by others who claim to have been cured, that they didn’t try hard

enough, they didn’t implement it properly, they weren’t open minded enough

( whilst typing this I keep wanting to add “ to allow Jesus into your life”

because let’s face it, it sounds like a cult. Handing over your money to find enlightenment).

Furthermore I have to say on reading some of the testimonials from those who

say their illnesses have been cured by LP, sound very much like those people

who have been brainwashed in some religious cult. They all say the same thing

and usually end with the same accusatory tone that if the process didn’t work for

you then you a) didn’t try hard enough b) don’t want to get well. Back to the old

blaming the patient game for those of us who chose not to get better.

The major problem with the studies that have been conducted is that they

have been so informal as to have patients with no official diagnosis provide

a self diagnosis ( on it's on page at the bottom it shows that the patient results

are from people who have self diagnosed - so may not actually have the illness

they are claiming to have http://lightningprocess.com/research/ ) also due to its

technique of only accepting positive affirmations and to condemn anything that

could be perceived as negative of course when you question people about how

they are doing after spending so much money on what could be bought in the

self-help section of a bookshop, they are going to tell you that they have improved.

They have been told that to say that they are sick, worse not doing well is not

following the process……..how can they say anything other than they have

improved or are living the life they love?

I am always concerned when I find Doctors are conducting clinical trials on

psychological approaches to treat physiological conditions. To me it’s lazy

medicine, it's a chance to shift the focus away from the doctors lack of

knowledge / scientific breakthroughs and pushes the fault for the illness

or disease back onto the patient. Any doctor that suggests this form of

treatment to me will just get a punch on the nose.

Now again for the record I will state it was alleged in a group I am admin in,
that a certain UK Doctor who is famous in PoTs circles is singing the praises
of a clinical study into using the lightning process to treat / cure PoTS. How
true this actually is, I don’t know. So there is no need for panic stations
however I would love to hear from anyone in the UK who this treatment
has been suggested to (who has PoTs) or who is part of the clinical study.

I also wonder how effective saying stop and repeating positive affirmations
 will be when my blood pressure drops to 70/40? or when I dislocate a joint
 if it will pop back in if I tell myself I am strong like a tree?



Resources / Links
https://hubpages.com/health/The-Lightning-Process-Didnt-Work-For-me

https://frownatsmile.wordpress.com/2011/01/06/patient-experiences-of-the-lighting-process-links/

https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue?utm_term=.bqrkDAmny#.ri1ZbXzVk

http://skepdic.com/lightningprocess.html

http://lightningprocess.com/ - official website

A weighty issue

My weight has been a major issue all my life at the age of 12 months I was placed on a diet by the health visitor because I had tripled my birth weight of 7lb 13oz. I look back at the pictures of me as a baby and I have seriously asked my mum how on earth could she take that ugly thing out in public? she laughed and said I loved you!

I know now that it wasn't hunger my little body was suffering from but an excessive thirst, even as a baby I was showing signs of dysautonomia (polydipsia) but it wasn't picked up by anyone. I was only ever tested for diabetes as a child due to my voracious thirst which of course always came back negative.

My mum and dad have often told me that I would suck on the teats of the bottles so hard that the sides of the bottle would touch and I would create such a vacuum that the teat would disappear inside the bottle, going off like a shotgun when I finished. Having spoken to my mum today she agrees with me I wasn't hungry it was my thirst I was trying to satisfy and to this day I am constantly thirsty.

During those childhood years I was taller than everyone else and heavier than everyone else. On occasions when I stopped growing I may have been considered a little pudgy around the middle but I was never fat / obese. However being so different from everyone else (leaving infant school with adult size 2 feet and being just under 5 foot at age 7) made me extremely body conscious and hyper critical of every square inch of my body. I was never whippet like, unlike the rest of the girls that I hung around with, I was normal but not rake thin.

This insecurity about my weight has followed me all through my life. I have been influenced by the media images throughout my life. As a teenager I had a subscription to Vogue magazine. I remember one article quite clearly, which followed a day in the life of the supermodel Naomi Campbell. I remember at the end of the article it said something like "oops I forgot to eat today". Forget to eat? I can tell you thats never happened in my life! How can anyone forget to eat or have so much control over what they put in their body that they don't eat? By the way Naomi wouldnt fit in a sample size these days, such is the way the fashion industry strives for thinness.

By the age of 17 I had already been to weight watchers and slimming world. I think the heaviest I had ever been when I went to these classes was the top end of 10st  / 140 lbs (perfectly fine for my height of 5ft 8in well within a normal BMI). I look back at the photos of when I was a teenager, when I considered myself obese because I wore a size 14 and think what an idiot. In those days a size 12 would have been acceptable, a size 10 would have been positively dreamy but no I wore a size 14 and in my mind I was an elephant. I think of all those wasted years when I looked stunning and healthy, spent on relentless diets to achieve thinness (perfection) and I think that is what coloured my relationship with food so badly.

By my early twenties I had developed a little known eating disorder called "binge eating". With binge eating you starve yourself for a day or two and then whilst you are starving yourself you plan what you are going to binge on with meticulous precision. Working in food retailing was a binge eaters heaven. All day surrounded by the food you were planning to binge on when you finally allowed yourself to eat. I dread to think how many calories I would consume during one of my binges.

Occasionally after a binge I would throw up, I probably made myself sick only on a handful of occasions. The problem was my gag reflex, it was pretty non- existent and sticking my fingers down my throat never produced the desired results. With hindsight I am glad that I couldn't make myself sick  because if I could of I would have then gone on to develop bulimia. Sometimes my wonky body does me a favour.

Around the same time that the binge eating was going on I developed a major depression and had what can only be described as a mini breakdown. I ended up having a lot of counselling, a community psychiatrist was involved and I also had to go to the local mental health unit once a week for almost two years. It was only at the mental health unit that I revealed the issue of binge eating. Through the support of my shrink and some hard work put in by myself with strict adherence to a cognitive behavioural therapy regime, I broke the cycle.

I am not cured of binge eating, I will never be cured as there is some place at the back of my brain where this little devil resides. In times of stress when I haven't been able to eat this little devil bides its time before striking. Unfortunately my husband is a binge eater too and has very little control over his demon. Living with me is pretty stressful. Hubby isn't a drinker (although we both smoke) his stress relief is food and the more calorific it is the better. It is hard for me when I am trying to be "good" when he brings all the "naughties" into the house. When the binging stops he always apologises for buying the food but as I always say to him, no one forces me to eat the stuff. I suppose its like two drug addicts or two alcoholics living together, its not a great environment to control that addiction.

In 2008 I was placed on steroids for my then diagnosis of myasthenia gravis. It was the worst thing that could ever happen to me. Steroids made me ravenously hungry and in 9 months I had put on 5 stone in weight (70lbs). I was the heaviest I had ever been and was wearing size 26/ 28 clothes. I truly was the monster I had perceived myself to be at age 17. I literally couldn't stop eating. I was so ashamed of the way I looked I hid away. Refusing visits from friends and declining visits from family. I have one picture of myself from that time and its my fat shaming picture, to remind me never ever to get to that size again.

I have lost all the weight I put on back in 2008, for years I was stuck at being 3 stone lighter. I was still enormous wearing a size 20/22. I felt disgusted with myself but lacked the willpower to do anything about it. I felt ugly and constantly berated myself for not looking good. All the time celebrities kept getting thinner and thinner.

Last year I lost 2 1/2 stone and was the thinnest I had been in years. I felt fabulous, I have though found it incredibly difficult to keep that weight off. Currently I am very limited as to what I can wear. My weight has been fluctuating wildly and I am fed up with not being in control. I have a wardrobe full of lovely size 16 clothes most of which don't fit. I am gutted that I have let it get this bad. I know that my crazy health situation has a massive part to play in this. Food is used in our house of a way of cheering ourselves up of dealing with stress and celebrating happy events. Our whole life revolves around food.

My health being so bad has upset me. I am not depressed its just some days it hits me really hard how bad things have become. The ultimate humiliation was having my catheter fitted by two complete strangers. I am an intensely private person and to have these people messing about with my nether regions upset me. I know it needed to be done and I was grateful as it provided some relief however when you can't control basic functions like urination it scares you. It also made me dreadfully unhappy for a time.

I now feel back in control of things although my bladder has played up (not to the extreme of the end of June), my dysautonomia has been awful during this heat and my pain levels have rocketed I am back to being happy again. Not a grinning idiot kind of happy, just the kind of happy when you can accept what's going on in your life. Even if I am carrying a few more pounds than I would like to I am back to refusing to let my weight stop me doing things like seeing old friends.

I hate the fact that so much of my life has been consumed by what I look like and how much I weigh. There is so much more to me than that. I have many regrets because there are things I have put off doing or haven't done because I didn't look good. This madness has to stop, especially when my illness is also trying to prevent me from doing things!

I  do feel dreadfully sorry for teenagers these days due to the images they are bombarded with. Due to photoshopping, airbrushing etc celebrities are held up to be the ideal, a size 8 or 10 (uk sizes) is now considered obese. You have to be a size zero or now a double zero to be considered perfection. Too much emphasis is being placed on looks instead of inner beauty. It makes me angry with myself that I allow my body image to be influenced by the fakery portrayed in magazines. I am sick for goodness sake and there are more important things in life than looking like you are dying from starvation!

However here I am again on another diet to lose the weight I have rapidly gained due to being on another few weeks of eating junk and not being able to wear the clothes I want to. There is no helping me.

Sleep and Chronic Pain part 3

Sorry this post isn't exactly how I wanted it to be. Its been a rough week and a humdinger of a migraine and recovery from it have hampered my blogging. So the post isn't completely polished but I hope its of some use to you.

I would just like to do a quick shout out to George Barron who is the author of www.myastheniablog.com, who kindly commented on my post about technical difficulties and has a link to my blog from his site. For those of you with MG his blog contains great information regarding medical studies and peoples stories about life with MG. Its well worth taking a look.

 I've been chatting about Chronic pain in my last few posts and suddenly  I became  aware that some of my readers may not know what the difference is between acute pain and chronic pain. Don't worry you aren't alone! I had to look it up myself to ensure that I had it right in my own head! My basic assumption was Chronic pain was something you had for a long time not related to any specific injury. I struggled when it came to acute pain so I did a bit of research.

This website has a great explanation of Chronic pain v acute pain
http://my.clevelandclinic.org/services/pain_management/hic_acute_vs_chronic_pain.aspx

So acute pain normally happens suddenly like stubbing your toe ( happens quickly and the pain subsides relatively quickly as long as you haven't broken something), after surgery, dental work, etc. By calling it "acute pain" doesn't diminish its severity, broken bones hurt, post operative wounds hurt. Its just acute pain lasts for a period of hours / weeks / months, up to depending on whose article / research you read 6 months.

When the pain you suffer from is moved from the acute pain status to chronic pain status, it again depends on what sites you read /  what research you've consulted and not forgetting when your doctor changes its classification. Chronic pain is usually diagnosed after 6-12 months. Long after an original injury or source of the pain should have healed. I've had back pain since I was 18 years old. This is classed as chronic pain, many years have passed since the original injury but the pain has not gone.

My chronic pain wonders up and down the pain scale. I am never in a position where I have no pain. On a good day it can be around a 2 or a 3. On a bad day it can be a 7 or an 8. There is never a day without pain and the same goes for nights.

I always find the pain scale quite inadequate to deal with describing pain. The language doctors use to describe pain is also quite confusing to me. They use words like is it dull, sharp, burning, stabbing. I remember the look of amusement on a junior doctors face when I told her my abdominal pain felt like I had swallowed a gorse bush.

The link between chronic pain and poor quality of sleep is well documented with many scholarly papers written on the subject. There are research trials taking place currently looking at using cognitive behavioural therapy to help people manage their pain and thus help them sleep.

I'm in favour of anything that helps chronic sufferers sleep better. Without sleep pain seems to intensify, we can become moody, emotional and function poorly during the day. The more sleep we don't get the worse we feel, a vicious never ending cycle.

I do have a problem with CBT being talked about as the great cure all. I found CBT very helpful when I suffered a major depressive episode many years ago, it helped me rationalise my feelings. I'm sceptical of its benefits when used with chronic pain. To me its like teaching Grannie how to suck eggs. If chronic pain sufferers haven't already developed their own coping strategies how the hell are they managing to function? Also how many of these researchers live with chronic pain, how do they understand what we go through every day and night? CBT has its uses but to me it smacks of "pain is all in the mind". Too many of us with chronic pain have been told "your pain can't be that bad, your smiling and talking" or " we can't find anything wrong with you" or " your pain can't be that bad". Adding a referral for CBT into the mix can make the sufferer suspicious that yet again they are being told their pain is in their head and its all "mind over matter".

Chronic pain sufferers use their minds throughout the day to distract themselves from their pain its a full time occupation. Which is why I think the nights are hard for us, there aren't the things going on at night as there are during the day. At night we are left alone with our pain. It either stops you going to sleep or wakes you up from it.

I don't have any magic cures or suggestions to help you. I really wish I did as I would like to get a decent nights sleep. Its important to remember when you suffer with chronic pain / sleep deprivation or both that you aren't alone. Seek support from anywhere you can, friends, family, medical professionals or the internet. There are some great support networks out there with people going through the same things you are. If you are in pain speak up don't suffer in silence!