Tag: vascular

Circulation Cracked?


what does this image have to do with improved bloodflow?

Nothing, except mackerel is also good for the brain.

So, what if any benefits have I noticed after beginning to address circulation and bloodflow issues in me in 2012? Has improved bloodflow below my head made any sort of difference at all?

I believe it has and will list the three things I’m sure have improved and touch on a couple of other points at the end.

zebrafish

HEAT INTOLERANCE GONE

My brain no longer feels like an overheated computer that’s given up and switched itself off thanks to a prolonged lack of clear flow of air to its cooling fan. The same thing I (and others who believe in Chronic Cerebro Spinal Venous Insufficiency) was happening to my head. Blood was returning to the heart along the equivalent of tiny, country lanes (collaterals) instead of getting onto the motorway and speeding its way back to the heart. This leaves the head, so the theory goes with deoxygenated blood for longer than it should.

BRAIN FOG GONE… MOSTLY.

I still occasionally get a brain freeze like the Green Party Leader when being interviewed in the run up to the UK general election in February, 2015. When that happens, I completely forget what I’m talking and thinking about. She thankfully managed to continue getting words out! Nowadays this mostly happens when I’m stressed (as she was). A meal with more sugars than normal can disrupt the bacterial balance in my gut which I think also gives me a foggy/groggy brain after waking.

FATIGUE GONE.

Aswell as bone crushing tiredness (with no obvious culprit) I was also dozing off after meals which I think was more of an unsteady insulin response but since removing sugar and foods that turn to glucose quickly in the bloodstream this also has gone.

Exercise helped there, too. Specifically, short bursts of intense exercise got my body back to dealing better with sudden rushes of glucose. Raising my heart rate and breathing perhaps jolted my body out of its increasingly sedentary state and reminded it of how it used to function? I mention this as a disordered response to blood sugar also causes fatigue – we’re multifactorial beings so addressing bloodflow from the head was only ever going to be one part of my healing process.

In fact, it’s almost as if the way we treat our bodies has an effect on how they perform for us!

Who knew?

Two more angles to come at the MS symptom problem from are listed below:

I knew my love of zebras was more than just admiring their stripes! This piece of research tells of the zebrafish’s suitability for studying the formation of myelin, (transparent if brief lives). I think it’s safe to say MSers have never been transparent but more importantly in the area being researched in the zebrafish study we can no longer effectively make myelin.

This research makes me wonder why on earth the regrowing of myelin or the vascular aspect of MS not been major topics of investigation?

Sleep and getting useful amounts of it has been touted again in the wellbeing media as one of the kindest things we can do for our brains which is good news to me as I love the stuff!

The Bloodflow Show

In this post I’d like to look at a health documentary on a relatively mainstream TV channel that was presented by a doctor. The show, indirectly, touched on two aspects of methods I use to deal with the physical effects of this ‘theory’ of MS that just doesn’t seem able to be put to rest. I’d like to try and present in 400 or so words my frustration with relatively mainstream MS research.

On BBC4 last night Dr Michael Mosley’s Blood Show aired. It started off with him exploring ways to get more oxygen delivered around the body. Athletes train in a low oxygen environment (the equivalent of being at high altitude) to improve their athletic performance by encouraging the increase of production of red blood cells. My curiosity came as I am trying to achieve something along the same lines by breathing concentrated O2 at pressure.

Hopefully, similar results are being attained for people who have a variety of starting points on the wellness/condition scale. More oxygen is being made available to all tissues and cells of variously healthy bodies.

I have been taking this treatment mostly at least once a week for the last 4 years after an ultrasound on my neck showed blood was flowing slowly out of my head. This situation might also mean that blood is flowing slowly into my head too resulting in reduced oxygenation or chronic hypoxia. I talk about this state here.

Many people with MS helped set up a network in the mid80s of independent charities housing hyperbaric chambers across the UK believing increased O2 will counter some of the symptoms of MS. I’ve talked about O2 therapy most recently here and my brush with venoplasty in Brooklyn, here.

white polka dots on red

About halfway through the Blood Show (it’s real title is just as silly) turbulent forces in bloodflow were addressed. Dr Mosley was looking into what happens when mankind is able to do things before it really knows what it’s doing!

Being able to perform angioplasty is an amazing feat of physics, biology and faith. Cutting into an artery in the groin and feeding a tiny balloon all the way to the heart, through various valves and bringing the interventional radiologist out into a vein between the heart and brain describes the procedure I elected to have in 2012. A handful of thousand others with MS have had similar procedures since 2009* when a vascular surgeon from Italy went public with his way of addressing a very old theory.

The Blood Show was looking at reengineering stents as the current, straight ones kept blocking for some reason. An aerodynamicist pointed out the turbulent forces at play in the circulation of blood and, using my own analogy from GCSE geography of the formation of oxbow lakes, deposits were blocking stented, straightened parts of human vasculature.

From this observation the team ended up with a more organic, swirly shaped design. This is more like the shape the body has evolved over hundreds and thousands of millennia of the tubes to carry the blood in.

Circulation of blood is beginning to get taken more seriously, apparently…

But not if you have MS, it seems. Shouting this at the TV screen would only have raised my cortisol levels which is something I try and avoid. But I’m still on the look out for a healthy channelling of my frustrations!

(all suggestions gratefully received in a comment, please).

*records aren’t available for numbers of people taking this procedure as it’s not believed in or even being investigated by mainstream science, yet.

The MS treatment I want to explore

deflated scull and crossbones balloon

In the news today (20 October) the UK was given the proposition that dying folk should be given experimental drugs before they get through the full trial process. Let’s ignore for the moment that the full trial process hasn’t delivered much for MS patients. So what sort of shenanigans are pharmaceutical companies looking for? Extensive testing hasn’t worked in MSers favour so what sort of dark hell might be unleashed without the double blind placebo controlled ‘gold standard’ in place?

Colorado have reported on this idea in May which a bit puts paid to my theory that it was a fine piece of distraction from the venal behaviour of drug companies not investigating an African disease until it starts threatening the monied, developed world.

My first thought was that it was a bit of damage limitation from the pharmaCos to distract us from the fact that curing a killer like ebola just isn’t financially worth them even starting (do they have a union that does pr for ALL their questionable/commercially sound behaviour?).

Bloomberg Businessweek reported on the plan in August.

Why does the treatment of the disease Ebola have any relevance to MS?

Don’t worry, I’m not connecting the two in a  symptom sort of way but I believe both conditions have been poorly served by pharmaceutical companies.

I really feel quite uneasy about the treatment that pharmacos have meted out on MS patients throughout my 20 year ‘MS career’. When I couldn’t get hold of DMDs, before they were available in the UK I wanted them very badly, then NICE was born (especially to avoid the ‘postcode lottery’ surrounding MS prescriptions) and they became available so I read up the trial results as I’ve mentioned more than once.

In my mid 20s with not many regular symptoms it didn’t make sense to me to take multiweekly injections for a less than 50/50 chance of benefit. Other than a couple of goes at steroids to get back my ability to walk again after fresher’s flu went bad in me I have stayed pharma free.

I think I’ve talked about a vascular aspect to MS having been spotted by Charcot in the 19th century. He gave this disease a name and yet this aspect of our condition is barely being investigated. I’ve certainly mentioned my own taste of this theory in Brooklyn a couple of years ago, where an ultrasound was taken of my jugular veins from the INside where a valve was seen to be blocked shut.

We have more and more appropriate imaging technology since noticing in 19thC postmortem brains that veins might be implicated. Why is this theory not investigated further with the full force of what we have at our disposal? It doesn’t help to get too stressed about it but, no matter how many times I stamp my feet, life STILL isn’t fair. My blood gently simmers at the injustice of our woefully inadequate treatment from the people we’re supposed to trust. I feel for those who live under the shadow of Ebola and the horrific injustice they face every day when they continue to see no effective science being done in their name.

I’m glad my father encouraged me to question everything (perhaps not consciously but he did). I think it’s stood me in good stead for identifying folk’s motives. Although I s’pose, with pharmaceutical companies you don’t have to dig too deep to see the profit motive.

Perhaps I’m very wrong though? See, that ‘question everything’ trait is shining through!

Personalised help for MS and other long term conditions?

23andME

So, in the post “eat your greens” I mention the process I’ve just begun which involved sending some spit over the Atlantic to have my DNA sequenced by these folk. I had some reservations about finding out something in my genetic code that might be lurking in the future but, knowledge is power. I might be worried about how this data could be used if it fell into the wrong hands but having an ms diagnosis in the here and now has already made me dead to insurance companies. I’m perhaps being pretty naive not making myself aware of the details of unforeseen data splashing horrors but I prefer not to spend time thinking how awful life could be.

So, being an impetuous child I went ahead anyway!

This is lifted from wikipedia‘s explanation of SNPs “Variations in the DNA sequences of humans can affect how humans develop diseases and respond to pathogens, chemicals, drugs, vaccines, and other agents. SNPs are also critical for personalized medicine.[5]“

For folk interested in family ancestry this sort of data could be a boon for identifying where great, great auntie Val has most ancestors. So many possible starts of stories!

The flipside of this personalisation is that genes don’t represent ‘set in stone’ certainties. A percentage chance is expressed for which conditions your body could be becoming most primed for. Epigenetics is becoming a fascinating topic for speculation and research. It studies how we interact with our environments and how our grandparents did also. I think I’ve mentioned the 2ndWW dutch famine research elsewhere?

Instead with 23and me sequenced data, we have information to act on…stop smoking.. eat more veg… (which is pretty good advice for most people) but supplement specific vitamins and minerals because certain SNiPs are weak in your sequence and can’t do a certain type of processing which might help us get a bit of extra energy for example. I mentioned methylation in another post, it refers to how our bodies allow the process of making energy in all our cells. How we treat our bodies is far more defining than some paperwork as this particular article spells out.

I feel a need to do these things (or perhaps it’s straightforward desire – a coping mechanism if you will?) because no one cares about my health and wellbeing as much as me. Certain medical professionals care about the condition they’ve become ‘experts’ in but only in their specific research area. How a body functions doesn’t seem to concern say, a neurologist. I feel invested enough to look at all sorts of strategies and specialisms to try and get my body working a little better and I don’t have any affiliations that might stop me looking in a range of areas.

This is why I’m interested in the vascular dimension to a number of chronic conditions. Sometimes, it doesn’t feel like there’s enough curiosity in science. I believe sometimes healthcare professionals could do with getting a bit of distance from a disease shaped problem to get a chance at seeing the bigger picture in individuals.

Zietgeist? Shine a light!

 

 

porthole in a decompression chamber
room with a view


This post will be about issues brought up in Face the Facts on wednesday the 16th July.


The radio show was talking about the how parents of children with a chronic condition were feeling compelled to pay for treatment that might benefit their autistic children as that particular chronic condition, in their opinion was falling through the NHS’s net.

I appreciate there are a number of folk that say autism IS curable through dietary strategies (I’m hoping one of them will do a guest post on here in the future) but for the moment we’ll call cases of autism manageable at best. Parents feel they have no choice but to look for alternatives to the standard NHS care offered to them.


This is a copy of my letter to the face the facts show:

Hello, I have MS (another chronic condition that is chronically underfunded by the NHS). 
An interesting report from the Commonwealth Fund came out a matter of weeks ago (on an earlier post ‘The NHS is Tiptop… and not‘). In it a US think tank (with an axe to grind about the US’s aversion to adopting universal healthcare perhaps?) released an analysis on the state of Western healthcare, the NHS came out on top with the US spending the most and coming in bottom on nearly all measurements. The UK was bottom of the list of ten for chronic conditions.

 

I have been taking hyperbaric O2 at my local MS Therapy Centre for the last three years, this sh*t works. I’m not cured but it helps bladder and fatigue issues and, as an added extra, a session in the tank lifts my mood (Look up effects of chronic, low level hypoxia).
It’s like the difference between going out on a blue sky day compared to a grey day – you can’t measure the difference but there is one. MS Therapy Centres might become another subject for John Waite’s Face the Facts?
If he’d like to look into a therapy that is providing benefits to a range of conditions including stroke I’d be happy to be a first point of contact as a trustee for my local centre. They can also be contacted centrally here.

We are a network of 50 or so independent charities around the country that were set up by people with MS for people with MS in the early 80s to initially provide this therapy in particular. Now many other therapies are available to  more than just those with MS.
They set this up before the internet and JustGiving! that’s a story right there, isn’t it?
MS has a similar set of symptoms to stroke (stroke’s vascular aspect takes an acute form) while MS has been described as a slow motion stroke and shining a different type of light it has also been suggested we rebrand MS as a form of dementia (the brain atrophy we experience from early on in the disease process is the same brain shrinkage seen in the elderly)

 

I’ve been reading and trying lots over the past 20 years to try and reduce some of the symptoms of this condition. I think I’ve learnt what NOT to pay too much attention to but I’m always interested in hearing about more stuff.

mainstream and less so

night scene of a Brooklyn sidewalk

I took this image when I was getting a form of angioplasty to counter some of the effects of MS in 2012. It hasn’t stopped the disease but my heat intolerance and brain fog is still vastly reduced two years later. I don’t believe the auto-immune theory answers all the questions that MS poses.

The auto immune theory lies at the base of mainstream, accepted MS treatments (see below for details and links on most).

An auto-immune disorder arises when the immune system, the body’s bouncers get confused, go a bit postal and start attacking the body’s own cells. In the case of MS the bodyguards appear to start beating up the nerves’ protective coating (myelin). There’s still big questions about proof that this is what’s happening in MS. MS auto-immune and/or neuro degenerative?

In the vascular model, researchers hypothesize that these bouncers are merely sweeping up at the end of a particularly rowdy night rather than attacking these cells themselves. It is theorized the damage was a side effect of vascular disruption.

The autoimmune model believes that these bodyguards go rogue and kill perfectly healthy and functioning cells. They can no longer distinguish between foreign cells (whose presence would rightly cause an immune response) and self.

The alternative MS theory has been explained most recently by Paulo Zamboni of Italy. He considers MS to be mostly a vascular disorder and a name for this disorder is Chronic Cerebro Spinal Vascular Insufficiency (CCSVI). There are a number of people who don’t agree with the theory that has its roots in the 19th century.

I felt the theory was worth further exploration and went to Brooklyn to get someone else to explore my vasculature for me.

The standard medical approach to multiple sclerosis includes disease modifying therapies, DMTs that don’t really address symptoms as such and require quite a leap of faith in your belief of your caregiver’s ability to alter the course of your disease. That could encompass having a belief in your yoga teacher as much as the men in white coats.

Having some sort of belief in something appears to be good for your brain to get on with its own healing (our brains consist of about 7% stem cells that could, in theory replace our own damaged myelin. Choosing to believe in something I don’t believe is silly.

MS medical treatments started with Copaxone, Rebif, Avonex Beta-Seron (fondly referred to as the CRAB drugs by past patients) which form the cornerstone of accepted MS modification. These guys have a pretty exhaustive list of some treatments available to us. The first of them was released in the US in the early 1990s and the fair prescribing of them brought about the creation of NICE (National Institute for Clinical Excellence seems to have changed its name once or twice and now stand for NIHCE… Health and Care Excellence rather than Clinical.

Newer treatments include Tysabri which has a very chequered history including being withdrawn from market and then brought back and still being responsible for some of its users contracting another brain disease entirely, PML!

Campath or to give it it’s newer name Alemtuzamab works by knocking out certain proteins in the patient’s immune system. This therapy was first used to treat cancer – decide carefully about the risks and benefits attached to taking any treatment but perhaps especially a recycled cancer drug?

Alternative treatments I’ve tried include hyperbaric oxygen therapy HBO, treating CCSVI, physiotherapy, Feldenkrais Method, Shiatsu, Reflexology, diet modification (gluten, dairy and sugar free), as wide a range of exercise as is possible, mindfulness, MBSR emotional freedom technique EFT, vitamin and mineral supplementation, Low Dose Naltrexone (LDN), Inclined Bed Therapy (IBT), and are discussed further on other pages on the site.

I also take cannabis using a vaporiser as it seems if big pharma are trying to replicate the real thing with Sativex why don’t I just get hold of some of the real thing?

I feel having a chronic condition calls for becoming an active participant in our own health rather than sitting back and taking what’s offered.