Sh*t

My fear of the dentist has become sort of legendary on the pages of this blog. It’s now no longer a fear `but has evolved into a phobia, which would be fine were it not for the fact that I can see in my future lots of dental work being needed. Which fills me with dread.

The phobia really took hold last year, I was sat in the waiting room and I could hear the sound of a dentists drill going in one of the consultation rooms. As I heard the drill sick reached the back of my throat and I started to sweat. I felt incredibly light headed and I had to fight the urge of just getting the hell out of there…if indeed my legs would have worked. 

I have never had a very good relationship with dentistry. I have a high pain threshold everywhere apart from my mouth. I am incredibly sensitive even a dentists tool checking my teeth can trigger sharp nerve pain. I often wonder if I have more nerves in my gob than the average human being? I also wonder if it is because you are so vulnerable lying their unable to move or communicate effectively that my fear or phobia has now taken grip. Pain happens at every dentist visit, even check ups. My reaction gets the same response from whatever dentist I see, they simply don’t believe that their action has caused me pain or discomfort. To be constantly told that your pain isn’t real by the people who you are supposed to put your trust in just erodes it over time. I’d love to say that as I have got older my visits to the dentist have got better…they haven’t and now a week Friday I will be going for my first extraction since 2003.

Last year in May I was told I needed a filling. Instead of stopping there my dentist in his friendly way that he was probably taught at university as a way to talk to patients then gave me every minute detail of what he would do to fill the tooth. You see the tooth was decayed beyond saving. He would remove all the pulp you know the bit where the nerve sits, clean it out and then fill the tooth. Panic coursed through me as he continued to give me every last detail. You see for this patient the more technical detail I know the worse it is. My heart rate his risen just typing this, even though I know that he won’t be doing this to my tooth next week. Remembering the appointment still fills me with horror.

I duly made an appointment and the earliest I could get was July. Which was crap because it meant I had a two month wait in which to build to complete hysterics. I was all set for July 12th and then the week before the appointment the dental surgery rang and cancelled. My head was all over the place as that was the same week my mum had been told she had cancer but what type and how bad wouldn’t be known until she was operated on. They offered me an alternative date but we had visitors coming so I said I would ring them back and make an appointment. I never did.

I won’t lie it was easier just to forget about the dentist than deal with it and just get it done. That is when I knew that my fear had turned to a phobia because rational sensible Rachel should have taken over and just bit the bullet and got the filling done. Instead I have endured a year of toothache on and off and the fear of developing an abscess.

When my husband had a phone call to prompt him to book an appointment I asked him to book mine as well. I didn’t want to go but the pain in my tooth was becoming more severe. I’d rather go and get the tooth pulled than wait to get an abscess ( I’ve had an abscess before it took three months to sort out as I developed a dry socket). A dry socket is agony but that is still preferable to me than hearing the drill go whilst it is inside my mouth.

So yesterday despite the mounting panic rising within me I went to the dentist. The dentist tried to tell me off about not coming back for the filling so I just told him my mum got diagnosed with cancer and that I just forgot. I didn’t forget I just chose not to remember. He shut right up and apologised. I then told him that the tooth that needed a filling now needed to be removed and that I wasn’t taking no for an answer. He tried to tell me that he wouldn’t remove the tooth if it didn’t need to be taken out. So I told him either he did it or someone else would. He was quite shocked as normally I am really polite and don’t say boo to a goose – always being terrified that being rude would cause more pain. I explained the tooth had been giving me toothache at a low level for months and that I just wanted it out. It is right at the back of my mouth and its being missing will make no difference cosmetically. He said he would take a look. So with my heart beating out of my chest he lowered the chair.

He took a look at it and asked me again if I wanted it removed to which I said yes. He informed me that the tooth was now fractured right down the middle. There is very little left of my actual tooth as it is being held together with a filling. He said due to the state of it he would remove it for me but he would need to keep an eye on the tooth in front of it as that had developed some decay and would need a small filling. I immediately jumped in and told him I didn’t want any detail. Small filling fine I can live with that. I just don’t need to know what that entails.

I was quite surprised during the appointment to find out I still have a fully erupted wisdom tooth. I was under the impression that they had all gone when I was a teenager as I had a few removed due to them trapping a small piece of gum between the wisdom tooth and the next tooth as they erupted. That piece of gum would then balloon forming like a pink bubble that would then cause horrendous pain. So all my previous wisdom teeth had been removed at the dentist. He explained that the wisdom tooth was showing signs of decay and due to its position it would be nigh on impossible to put a filling in. This again would need to be watched as it would need to be extracted. I don’t know if he means by him or if he meant I will need to have to have it done at the hospital. News to me anyway that I have an erupted wisdom tooth.

I was in and out on that appointment, I booked next weeks appointment and then went out into the fresh air. My legs had turned to jelly and I felt pretty close to passing out. Which isn’t nice when you are alone and waiting for hubby to get the car. I thought ( I don’t know why) they had a bench outside and was going to park myself on that. They didn’t so I had to balance myself against a wall in such a way that if I did pass out there would be minimal damage to me.

Two hours later and my legs were still jelly and I was still feeling like I was going to vomit. Just from the feeling of panic that a visit to the dentist will produce. Jay kept telling me how brave I had been to attend when I hate it so much and for stating my case for getting the tooth pulled. I didn’t feel brave I felt awful. Its a difficult feeling to describe. You know logically the fear and how it controls you is out of proportion to the event but you can’t help it. There is no logic to it and it isn’t a case of talking yourself down. For me it is a whole body reaction, I feel faint, I feel like I am going to be sick, I find it difficult to speak, my legs turn to jelly and feel like they will crumple under me at any moment. The whole time my brain is screaming “Shit get out of here”. My heart rate well is probably close to the 200’s the way my chest feels and all the while my exterior maybe cool and showing none of the inner turmoil / fear that I am feeling.

Maybe that is the problem? It seems no matter how many times I tell people I am terrified of the dentist, it is dismissed with “well nobody likes the dentist”. But it is just so much more than that. I will be honest last week when my tooth was really sore I contemplated going to the kitchen shit drawer getting a pair of pliers and removing my own tooth. Just so I could avoid going to the dentist. If you think that is normal behaviour for someone who doesn’t like the dentist… then you have a screw loose.

My gp tried to help and told me there was CBT online courses I could try to get over my phobia / fear. I told her I was sure there was but when your own dentist fails to appreciate how much going to see him fucks you up then me doing all that work is pointless. It’s not like I can up and change dentists any time I like it took us years to get an NHS dentist when we moved here. Many of them now have closed lists. So it simply isn’t a case of moving and finding a more sympathetic one. However Jay spoke to his dentist that morning and she said she would accept me onto her list if I wanted to move. I am giving my dentist one last chance. If he blows it this time I will be taking her up on the offer of moving within the practice.

PoTs and 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 – https://en.wikipedia.org/wiki/Neuro-linguistic_programming, )  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

Official Lightning process website

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/

http://forums.phoenixrising.me/index.php?threads/a-balanced-view-of-the-lightning-process.35835/

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

http://skepdic.com/lightningprocess.html