Well then, I see that my line spacing is still off in Google's own Blogger Android app?
Even with a new phone that still occurs and so too do the tags, or labels, go missing?! Meaning that the problem is not phone specific so must be very widespread.
*SIGH* all those updates.
Doctors and drugs are a laughable thing these days in my view. After a very rare and relaxed evening of late I have woken a little later than normal but to a building anxiety attack. This was heartbreaking as I thought that now I had taken my first Propranalol beta-blocker I thought they may have subsided for good.
I checked my emails for reassuring replies from Citizen's Advice or Mind but there was nothing and I started to look at Mind's website to see how you actually get to talk to someone. I thought 'you never know it might be a self-referral or walk in service' as I simply cannot recall.
Then I noticed that when I emailed I sued the wrong email address so I emailed again and used another one I found on their site.
The funny thing is in this instance is that I have been waiting for a reply from them and then I have had this anxiety attack that hit me so hard I lost the use of my legs. Since that has happened I have been seen by an emergency paramedic that showed a littler concern, spoke to my GP on the phone who showed some concern, spoken to my GP face to face who showed some concern and prescribed Propranalol and told me to speak to Citizen's Advice about help with support, taken the Propranalol and got up the next morning experiencing an anxiety attack. Yeesh.
So I started looking up about Propranalol and whether it makes you drowsy and the best time to take it and I found something that is just ... typical.
I have mentioned many times over four years that I have wanted to try a drug called Pregabalin but that I have been refused this three times by three consecutive Doctors. Gabapentin is the better drug, the more modern version easier to tailor and, the truth, too expensive.
The hilarious thing about not being given Pregabalin is it is actually the third best drug for the condition of Fibromyalgia. So I literally get given a fourth rate drug that is widely known to make people ill. Yeah ... that is how utterly ridiculous the medicine industry has got. Top of the pile and the only drugs that deals with the core problem is sodium oxybate which is only allowed for narcolepsy. Second on the list is Milnacipran they discovered seems to target the pain receptors specific for Fibromyalgia better than any other drug but is also not approved. Then comes Pregabalin and then Gabapentin. There might be some others that fit into that top three I do not know about.
Oh yeah Cannabis is good too ... but we know how that one ends, lol.
Yeah so there I was just doing some research on Propanalol when I saw someone ask a question about anxiety and mention the word 'Lyrica'. I thought 'hang on? Isn't Lyrica Pregabalin? Why is it mentioned in a queestion that includes anxiety?'
Well would you believe that someone was given some, lucky *£#4!, by someone else for their anxiety and they worked?!
Oh dear. When you have something that affects you so badly to the point that you want to sling yourself in front of a bus or lorry and then you read that the drug you have been refused for four three years would actually not only get rid of your other condition but this feeling of suicidal doom too?
I just do not understand the people in power who run these organisations in such an idiotic fashion due to just how narrow minded they are. In fact 'narrow minded' is something of an understatement in almost every instance. How long have we had smartphones and the Internet in our pockets now? It is not the simple fact that we could find the truth out on our own but more the case of how can they possibly think in any way that we wont?!
Added to this is the fact that this is not something new or that only occurred in the last couple f years either. I was late to the smartphone party but I have owned a Nokia E71, Motorola Defy, Motorola Atrix, Moto G and now a Moto X and the Moto G lasted me over two years. Each phone I have had has lasted me close to the two year mark. The Moto G probably closer to 2.5 years and maybe even 3? But let us leave smartphones out of the equation for a moment and ask ourselves how long as the Internet been about? I was using it in 1997, possibly 1996, and it is now 2016 so closing in on 20 years.
Mind you it took the health and medicine industry more than 80 years to realise that Fibromyalgia Syndrome is not a made up condition. Yup hard to believe that around the world, or at least in America and Britain, thousands of people who had never met was all having these weirid collections of symptoms occur bbut they thought they were so intelligent that they could state they all made them up because they were too ignorant or lacking the intelligence to realise the truth.
Oh god, I hope these drugs do not take even a fifth of that time for them to realise that they will save their economies and tax pool a lot of money to approve them and prescribe them?! Lol.
I have also seen the term 'Fibro Warriors' used and at first wondered what it meant before then thinking, 'yeah you need to a a bloody hardened warrior to deal with the cursed condition!' LMAO!
The question asked by someone in the link below is 'Will a Doctor in the United States prescribe Lyrica for anxiety/panic attacks?'
https://www.drugs.com/answers/will-a-doctor-in-the-united-states-prescribe-286718.html
Showing posts with label Lyrica. Show all posts
Showing posts with label Lyrica. Show all posts
Thursday, 14 July 2016
Sunday, 13 December 2015
EUROPEAN MEDICINES AGENCY - RESPONSE AND REPLY
Well I finally got a response to my questions of why sodium oxybate and milnacipran were turned down for use with Fibromyalgia.
Rather bizarrely they have responded and included Pregabalin with these two which, though I mentioned, is cleared for use with Fibromyalgia as far as I was aware!
Now if I missed something here and Pregabalin has not been cleared for use with Fibromyalgia I am a bit confused as to not only why I was told I would be prescribed it but that not a single GP or specialist I have mentioned the drug to has replied that it is snot cleared for Fibromyalgia.
Conclusion?
It is not cleared by the NHS for use with them and I was given a bullshit excuse for this too as they thought I had been told or informed it was not cleared for use.
Did they just let the proverbial cat out of the bag here?
Anyway I will now paste their full email response along with my reply ...
EUROPEAN MEDICINES AGENCY ..
Dear Mr Haswell
Thank you for your letter of 30 November.
The decision to apply for marketing authorisation of a medicine in a particular indication is not made by the European Medicines Agency (EMA), but the companies concerned. The Agency can only evaluate the evidence with which it is presented and can only approve a medicine for marketing if the benefits are clearly demonstrated and outweigh the risk of side effects. EMA’s assessments do not consider matters of cost and reimbursement, which are handled at a national level.
However, in the treatment of fibromyalgia, good evidence of effectiveness was not shown with sodium oxybate (Xyrem), pregabalin (Lyrica and its generic alternatives) or milnacipran when the companies marketing these medicines applied to the EMA to authorise such use.
In 2011, the company which markets Xyrem (UCB Pharma) applied to the Agency to extend the use of the medicine to patients with fibromyalgia. This involved results from two short-term studies involving 1,121 patients with moderate to severe symptoms and one longer term study involving 560 patients; the majority of the patients came from outside the European Union (EU). Results in the subgroup of patients from the EU in these studies did not demonstrate a clear benefit, either short- or long-term and there was a high incidence of side-effects on the brain and nervous system. As a result the EMA’s committee of experts responsible for the evaluation considered at that time that the benefits of the medicine did not outweigh its risks, and recommended against approving it to treat fibromyalgia. Details of this evaluation are given in the Agency’s assessment report at: http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Assessment_Report_-_Variation/human/000593/WC500106940.pdf.
With respect to pregabalin, in 2009 Pfizer Ltd presented the results of five main studies involving over 3,000 adults with fibromyalgia. Again, most of the patients included in the studies came from outside the EU. After evaluation, the Agency was similarly concerned that the benefits of Lyrica in fibromyalgia had not been shown in either the short or the long term in patients from the EU. There were no consistent or relevant reductions in pain or other symptoms in the short-term studies. In addition, the change in symptoms did not seem to be related to the dose of Lyrica that the patients received, and the maintenance of Lyrica’s effect was not shown in the longer study. At that point in time, therefore, any benefits of Lyrica in the treatment of fibromyalgia did not outweigh the risks of its known side effects. Hence, the Agency recommended that the change to the marketing authorisation be refused. For further information, see http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Assessment_Report_-_Variation/human/000546/WC500076177.pdf.
In the same year, an application was made to EMA by the company Pierre Fabre Médicament for the use of milnacipran to treat fibromyalgia. After evaluation of three main studies, involving 2,960 adult patients with fibromyalgia, the Agency’s scientific experts were of the opinion that the effect of the medicine was marginal. There was again a lack of data on the long-term effects in a European population. Therefore, at that point in time, EMA was once more of the opinion that the benefits of the medicine in the treatment of fibromyalgia did not outweigh the risks, and recommended against marketing authorisation. For more information on this, including details of the assessment, see under the various tabs on http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/001122/human_med_001313.jsp&mid=WC0b01ac058001d124
Should a further appropriate application for use in fibromyalgia be made for any of these medicines, the Agency would thoroughly evaluate any new scientific evidence presented, in order to reach a decision on whether to recommend marketing authorisation.
The Agency’s remit covers the scientific assessment of medicines and the monitoring of their safety once they are marketed, and we are unable to comment on the other matters covered in your letter.
A copy of this reply has also been sent to you by post.
Kind regards
Paul Blake
Stakeholders and Communication Division
MY REPLY ...
Rather bizarrely they have responded and included Pregabalin with these two which, though I mentioned, is cleared for use with Fibromyalgia as far as I was aware!
Now if I missed something here and Pregabalin has not been cleared for use with Fibromyalgia I am a bit confused as to not only why I was told I would be prescribed it but that not a single GP or specialist I have mentioned the drug to has replied that it is snot cleared for Fibromyalgia.
Conclusion?
It is not cleared by the NHS for use with them and I was given a bullshit excuse for this too as they thought I had been told or informed it was not cleared for use.
Did they just let the proverbial cat out of the bag here?
Anyway I will now paste their full email response along with my reply ...
EUROPEAN MEDICINES AGENCY ..
Dear Mr Haswell
Thank you for your letter of 30 November.
The decision to apply for marketing authorisation of a medicine in a particular indication is not made by the European Medicines Agency (EMA), but the companies concerned. The Agency can only evaluate the evidence with which it is presented and can only approve a medicine for marketing if the benefits are clearly demonstrated and outweigh the risk of side effects. EMA’s assessments do not consider matters of cost and reimbursement, which are handled at a national level.
However, in the treatment of fibromyalgia, good evidence of effectiveness was not shown with sodium oxybate (Xyrem), pregabalin (Lyrica and its generic alternatives) or milnacipran when the companies marketing these medicines applied to the EMA to authorise such use.
In 2011, the company which markets Xyrem (UCB Pharma) applied to the Agency to extend the use of the medicine to patients with fibromyalgia. This involved results from two short-term studies involving 1,121 patients with moderate to severe symptoms and one longer term study involving 560 patients; the majority of the patients came from outside the European Union (EU). Results in the subgroup of patients from the EU in these studies did not demonstrate a clear benefit, either short- or long-term and there was a high incidence of side-effects on the brain and nervous system. As a result the EMA’s committee of experts responsible for the evaluation considered at that time that the benefits of the medicine did not outweigh its risks, and recommended against approving it to treat fibromyalgia. Details of this evaluation are given in the Agency’s assessment report at: http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Assessment_Report_-_Variation/human/000593/WC500106940.pdf.
With respect to pregabalin, in 2009 Pfizer Ltd presented the results of five main studies involving over 3,000 adults with fibromyalgia. Again, most of the patients included in the studies came from outside the EU. After evaluation, the Agency was similarly concerned that the benefits of Lyrica in fibromyalgia had not been shown in either the short or the long term in patients from the EU. There were no consistent or relevant reductions in pain or other symptoms in the short-term studies. In addition, the change in symptoms did not seem to be related to the dose of Lyrica that the patients received, and the maintenance of Lyrica’s effect was not shown in the longer study. At that point in time, therefore, any benefits of Lyrica in the treatment of fibromyalgia did not outweigh the risks of its known side effects. Hence, the Agency recommended that the change to the marketing authorisation be refused. For further information, see http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Assessment_Report_-_Variation/human/000546/WC500076177.pdf.
In the same year, an application was made to EMA by the company Pierre Fabre Médicament for the use of milnacipran to treat fibromyalgia. After evaluation of three main studies, involving 2,960 adult patients with fibromyalgia, the Agency’s scientific experts were of the opinion that the effect of the medicine was marginal. There was again a lack of data on the long-term effects in a European population. Therefore, at that point in time, EMA was once more of the opinion that the benefits of the medicine in the treatment of fibromyalgia did not outweigh the risks, and recommended against marketing authorisation. For more information on this, including details of the assessment, see under the various tabs on http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/001122/human_med_001313.jsp&mid=WC0b01ac058001d124
Should a further appropriate application for use in fibromyalgia be made for any of these medicines, the Agency would thoroughly evaluate any new scientific evidence presented, in order to reach a decision on whether to recommend marketing authorisation.
The Agency’s remit covers the scientific assessment of medicines and the monitoring of their safety once they are marketed, and we are unable to comment on the other matters covered in your letter.
A copy of this reply has also been sent to you by post.
Kind regards
Paul Blake
Stakeholders and Communication Division
MY REPLY ...
European Medicines
Agency
I
have received your report on the situation regarding the application
of the drugs sodium oxybate (Xyrem), pregabalin (Lyrica, though I
never said it was refused to be used only refused over money and this
has been told to me by at least two Doctors) and milnacipran.
- “effectiveness was not shown with sodium oxybate (Xyrem), pregabalin (Lyrica and its generic alternatives) or milnacipran “
- 1) This conflicts greatly with everything I have ever researched and even solicitors I worked for stated that I am extremely good at research
- 2) This also conflicts with the patients accounts of the use of these drugs
- “In 2011, the company which markets Xyrem (UCB Pharma) applied to the Agency to extend the use of the medicine to patients with fibromyalgia. This involved results from two short-term studies involving 1,121 patients with moderate to severe symptoms and one longer term study involving 560 patients; the majority of the patients came from outside the European Union (EU). Results in the subgroup of patients from the EU in these studies did not demonstrate a clear benefit, either short- or long-term and there was a high incidence of side-effects on the brain and nervous system. “
- This is a … frankly bizarre statement … also ... WHAT side-effects?
- 1) Are you stating that thins are not done this way in Europe in which case why would they ever bother approaching Europe over these drugs
- 2) I very much doubt that drug companies would approach the EU, despite my understanding of their underhanded nature and dislike of them, with drugs that do not clearly work or cause such terrible side effects
- 3) All drugs have side effects and do you not think it I down to the patient when it comes to weighing up the risks to the benefits? Anyone can so no or do you not think that patients are capable of rational thought?
- 4) Further to the first point … where are your own trials?
- 5) Your statement of weighing up the benefits and risks contradicts your statement that there was little or no effectiveness
Do
you know what I constantly think of several time each week and have
done for the last 7 years at least?
What
it would be like to actually take sodium oxybate even for just a week
to ee what it feels like to be normal once again.
I
also ponder that as the Fibromyalgia Syndrome issue is lack of
restorative sleep and that symptoms collect over many years that
taking sodium oxybate for just one week may reset
everything back to the start
prior to being affected by my first ever symptom.
In
other words having none at all or only one of the 120 odd symptoms I
currently experience.
Another
conclusion I have come to regarding just the case with Fibromyalgia
Syndrome is that the people that make up the committees and
organisations that make thee absurd decisions are idiots made up of
friends of people in government, central or local, that have not the
first clue about just how bad some conditions can be on the human
body as well as the mind.
Your
answer has had zero effect in changing that view.
Incompetence,
corruption and general skulduggery can manifest absolutely anywhere
and in my years of endeavours I have generally found it to be
everywhere I look 100% of the time.
In
which case and in every instance there is a general protocol that
exists for making challenges, legally or otherwise, to said
organisations.
I
would like to ask of you what exist for you?
Can
you provide me with a ombudsman for you or governing body or even a
watchdog? I imagine any challenge would be quite tricky for any
professional body especially when they have other professional bodies
that conflict with their reasons that are based on something as
flimsy as …
Side effects of
drugs.
This made even said drugs are cleared for ailments that re not even
in the same league as Fibromyalgia Syndrome.
Now
I will mention my blogs once again.
I
blog about corruption and I have covered organisations in the dozens.
As big as you like. I have never been challenged bot that is because
of who I am and how I do things.
No
bullshit. I am honest in everything I do, sincere and to the point no
matter how sharp this may be. Except that when I do this I am not
doing this purely through my blogs on corruption.
You
might have noted the letters after my name? BSc Applied Computing.
I
do a blog on computer hardware and software with some gadgets thrown
in. But this is not my only subject of expertise and I provide blogs
on …
- Batrachology
- Herpetology
- Ichthyology
- Astronomy and Astrophysics
- Orchidaceae
- British Wildlife
- others including Kung Fu, Photography, Music, Movies and more
My
corruption blogs alone number around 3,000 posts and some read like
Tolstoy's War & Peace.
I
have a dozen blogs and the amount of writing involved is astronomical
and with each and every one what people see is someone level headed,
factual, professional and honest. Someone that does not like what he
sees, dislikes the lack of professionalism, abuses of positions of
power and what the UK has become.
Someone
that has not just gone out and done something about it but has spent
years secretly recording, collecting and compiling letters that go
back 20 years and publishing everything for to help other victims,
people suffering physically, mentally or both.
What
surprises people most of all is that I have done this alone and there
is one very outstanding endeavour that over-shadows everything I have
done previously.
Despite
many of my endeavours being worthy of front page national tabloid
news this one last one is capable of a front page serial all on its
own.
If
they are surprised at what I have done and achieved so far with my
excess of 100GB of data it is nothing compared to what is coming over
the next couple of months. Something that will amass so much
attention that it will make the 300,000 visitors I have had thus far
look like a drop in the ocean.
While
I twiddle my thumbs waiting for this to happen I had some requests to
my GP go unanswered and I know all the reasons why. As I have proved
them in the past over and over again to show my visitors this is not
a localised incident, not a one off but that many Doctors and GP's
are lying and are doing so under command.
Indeed
many of the stories that have arisen on everyone, not just the NHS,
have originated as one my stories.
Indeed
if I inform you that the late backbench Labour MP, Michael Meacher,
approached me via email in January 2013 requesting if he could use my
blog data to atack Iain Duncan-Smith in the House of Commons while
end others to the news media I am sure you will realise that even two
years ago I had a hell of a lot of data?
I
have not even published half of what I have!
So
getting back on track …
I
found myself being fobbed off again, I looked up the link between
high blood pressure, which I have and my father died of a burst
aneurysm at 56, I am 47 nearly, and read about milnacipran and it
being refused along with sodium oxybate. I then decided to look into
who make these decisions and mount another challenge against another
organisation.
It
kind of kills the time while my secret four year long court battle
waits to hit the headlines and gives me something to do while peaking
my interest.
So
that procedure/ombudsman/governing body I asked for?
I
look forward to hearing from you with great interest.
Yours
sincerely
Martin
Haswell BSc
Monday, 30 November 2015
ONE LONG ROAD OF PAIN
Ooh boy! Has today been a bad one and it is only 1.30pm!
First off I am stuck between a rock and a hard place, quite literally and to say it is not stressful ... well I would be lying.
It also turns out that not only have the naysayers now decreed that the positive parts including money is all bullshit, that they have taken it upon themselves to decide that all the previous stuff, much I was present at and recorded dozens of things, is all bullshit too.
Damaged egos, eh?! LMAO!
Added to that is I have a GP appointment where I am going to try once again to be referred to an Osteopath over my back pain.
I have now confirmed that high blood pressure is linked to Fibromyalgia and in so doing discovered a new drug, Milnacipran (brand name Savella) that is reported to have better affects with Fibromyalgia sufferers than the totally cheap crap and wrong drugs they fob you off with, like Gabapentin and Amitriptyline.
It seems that this new Milnacipran works on specific neurotransmitters in the brain that are affected by Fibromyalgia Syndrome which itself is partly driven, or mostly, by not having the sleep where your body repairs itself, including the brain itself.
Yeaahh ... imagine that next time your thinking about your friend or family member having something you do not believe or think does no exist, because of idiot medical ... umm experts? I think not.
I know because I went through it for 13 years, though it turned out I had had FMS for closer to 20 years!
I am not going to get into the number of things the NHS destroyed by being both idiots, deaf and liars because I have mostly done that already. Spent 3.5 years almost doing that on this blog ...
... saving money? I think not!
It also mentions the other drug which is the only one that work on the cause of Fibromyalgia, lack of restorative sleep, Sodium oxybate (brand name Xyrem).
Please note that on the page in the link below that Gabapentin is Neurontin, the latter being the brand name which they seem to fail to mention.
Sodium oxybate (Xyrem) is the drug that Dr Kirkham, specialist ion Fibromyalgia at Guy's Hospital, had, to my complete shock, never heard of. I told him it was a shock to hear that as it is the one and only drug that deals with the core problem for people with Fibromyalgia.
In other words it is not only dealing with the pain, not masking it, but deals with he fatigue too. I think this goes double for Chronic Fatigue Syndrome which I believe is just Fibromyalgia Syndrome in its early stages,
If you have come here about the drugs I mention of Fibromyalgia or Chronic Fatigue, or other subjects for that matter ... you can search the archive! Lol.
So I am thinking about all that ... plus the two other things both concerning large amounts of money, one I do not want to be involved in and one I thought I was and now I am not ... how long for and why not I am in the dark about.
Of course as I stated previously my life has been made a living hell by the naysayers made up with those with damaged egos and those jealous with envy who do not want it to be true.
For the first time in several days I pop in to get something from a friends store and am on in serious back pain. I then decide to head to town for a brief pick up and head home. I bizarrely consider catching an unusual bus route home but miss a bus.
I am then walking down a long straight road I use and I get a third of the distance along it when ... WHAM! No George Michael has not crashed into another Prontoprint, or whatever it was, I get a sudden attack of one of my many other pains straight into my right foot!
I cannot walk! No buses down this road either! I stop for several minutes, lean onto my walking stick and wonder how a human is supposed to deal with this amount of pain, stress and thoughtlessness of others before trying to carry on. Two steps - bang, bang! Darn it this is seeming impossible.
Now here is the bit that no one considers nor asks about ... what do I at times like this? Well I have my walking stick and I stand there and think that there must be a walk that will keep the pain from firing off.
I walk with the heel on the right foot and try not to put the ball of my foot onto the pavement, it does not always work.
I limp and lean hard and my arms get tired and I switch arms and I feel light drops of rain on my face and think "please, no! Not fucking now!! You have made things hard enough at a tough time already, do not fucking rain now, its all you have done for week on end!!"
I look at the pavement stretching off into the distance. It suddenly looks a very long way away.
I have to make three major stops of several minutes, more leaning and questioning, along with a half a dozen stops of a few second here and there.
Despite actually thinking this was going to be the first time I was going to fail to get home., because of my location far from a bus stop, I struggled, bit my lip hard, got down deep and I worked through the pain and limped all the way home.
Oh how I wish that we could get just a week or two of some clear skies and wind free! You have no idea how much I so want some of those so that I can get out on my damned bike!
Because the other things I have to deal with, harder when your avoiding people, is the ever so annoying boredom!
The link to the drug I researched that holds the link to high blood pressure and Fibromyalgia along with the listed drugs above ... yes including the ones I get refused, like Pregabalin (brand name Lyrica) and the mentioned Sodium oxybate (brand name Xyrem), click the link ...
http://www.ukfibromyalgia.com/treatments/medication.html
First off I am stuck between a rock and a hard place, quite literally and to say it is not stressful ... well I would be lying.
It also turns out that not only have the naysayers now decreed that the positive parts including money is all bullshit, that they have taken it upon themselves to decide that all the previous stuff, much I was present at and recorded dozens of things, is all bullshit too.
Damaged egos, eh?! LMAO!
Added to that is I have a GP appointment where I am going to try once again to be referred to an Osteopath over my back pain.
Oh and the nausea.
Oh and I must remember to mention waking up to discover my left hand is digging into a tender area around the base of my neck, which was already spotted twice and then retracted by the NHS. This may be linked to the nausea, you see?
Which may be linked to the back pain that was also spotted twice and then retracted.
Being wrongly diagnosed, especially when you yourself know what it is, is one thing. But being diagnosed and then having things retracted?
Happened with not only my back, twice, but also my right knee twice and an inguinal hernia on my right side. Recordings of the Doctor in question being caught red-handed by me and admitting falsifying test results and then retracting that too! Lol.
If I ever told them in anger I was recording them I would never have acquired as much as I have. Let them lie, let them think they are getting away with it. Move onto the next thing, let them build up a great deal of over-confidence in lying ...
...carry on recording. Mount it all up ... post it all on the Internet when you have far more than enough.
Watch as journalists, newspapers and TV idiots act no different to those they expose and steal your stuff, alter it, go after their own but similar story and you get nothing in the way of thanks for it.
Well I did say the whole blog was a trap?! Remember? LOL!
I have now confirmed that high blood pressure is linked to Fibromyalgia and in so doing discovered a new drug, Milnacipran (brand name Savella) that is reported to have better affects with Fibromyalgia sufferers than the totally cheap crap and wrong drugs they fob you off with, like Gabapentin and Amitriptyline.
It seems that this new Milnacipran works on specific neurotransmitters in the brain that are affected by Fibromyalgia Syndrome which itself is partly driven, or mostly, by not having the sleep where your body repairs itself, including the brain itself.
Yeaahh ... imagine that next time your thinking about your friend or family member having something you do not believe or think does no exist, because of idiot medical ... umm experts? I think not.
I know because I went through it for 13 years, though it turned out I had had FMS for closer to 20 years!
I am not going to get into the number of things the NHS destroyed by being both idiots, deaf and liars because I have mostly done that already. Spent 3.5 years almost doing that on this blog ...
... saving money? I think not!
It also mentions the other drug which is the only one that work on the cause of Fibromyalgia, lack of restorative sleep, Sodium oxybate (brand name Xyrem).
Please note that on the page in the link below that Gabapentin is Neurontin, the latter being the brand name which they seem to fail to mention.
Sodium oxybate (Xyrem) is the drug that Dr Kirkham, specialist ion Fibromyalgia at Guy's Hospital, had, to my complete shock, never heard of. I told him it was a shock to hear that as it is the one and only drug that deals with the core problem for people with Fibromyalgia.
In other words it is not only dealing with the pain, not masking it, but deals with he fatigue too. I think this goes double for Chronic Fatigue Syndrome which I believe is just Fibromyalgia Syndrome in its early stages,
If you have come here about the drugs I mention of Fibromyalgia or Chronic Fatigue, or other subjects for that matter ... you can search the archive! Lol.
So I am thinking about all that ... plus the two other things both concerning large amounts of money, one I do not want to be involved in and one I thought I was and now I am not ... how long for and why not I am in the dark about.
Of course as I stated previously my life has been made a living hell by the naysayers made up with those with damaged egos and those jealous with envy who do not want it to be true.
For the first time in several days I pop in to get something from a friends store and am on in serious back pain. I then decide to head to town for a brief pick up and head home. I bizarrely consider catching an unusual bus route home but miss a bus.
I am then walking down a long straight road I use and I get a third of the distance along it when ... WHAM! No George Michael has not crashed into another Prontoprint, or whatever it was, I get a sudden attack of one of my many other pains straight into my right foot!
I cannot walk! No buses down this road either! I stop for several minutes, lean onto my walking stick and wonder how a human is supposed to deal with this amount of pain, stress and thoughtlessness of others before trying to carry on. Two steps - bang, bang! Darn it this is seeming impossible.
Now here is the bit that no one considers nor asks about ... what do I at times like this? Well I have my walking stick and I stand there and think that there must be a walk that will keep the pain from firing off.
I walk with the heel on the right foot and try not to put the ball of my foot onto the pavement, it does not always work.
I limp and lean hard and my arms get tired and I switch arms and I feel light drops of rain on my face and think "please, no! Not fucking now!! You have made things hard enough at a tough time already, do not fucking rain now, its all you have done for week on end!!"
I look at the pavement stretching off into the distance. It suddenly looks a very long way away.
I have to make three major stops of several minutes, more leaning and questioning, along with a half a dozen stops of a few second here and there.
Despite actually thinking this was going to be the first time I was going to fail to get home., because of my location far from a bus stop, I struggled, bit my lip hard, got down deep and I worked through the pain and limped all the way home.
Oh how I wish that we could get just a week or two of some clear skies and wind free! You have no idea how much I so want some of those so that I can get out on my damned bike!
Because the other things I have to deal with, harder when your avoiding people, is the ever so annoying boredom!
The link to the drug I researched that holds the link to high blood pressure and Fibromyalgia along with the listed drugs above ... yes including the ones I get refused, like Pregabalin (brand name Lyrica) and the mentioned Sodium oxybate (brand name Xyrem), click the link ...
http://www.ukfibromyalgia.com/treatments/medication.html
Sunday, 18 May 2014
THE HAND THAT SHOCKS THE DODO
The following was stated about the drugs currently used, in the US this is, for Fibromyalgia but there is no mention of Sodium oxybate.
Of course this could have been refused as it might have lead me to Fibromyalgia as I was unaware of my own condition at the time.
Please remember that a very noticeable effect of two consecutively prescribed drugs were list at the bottom of an articale where I had read of around a couple of dozen of my own symptoms that stated these were the only drugs known to have an effect on Fibromylagia! I had already strongly suspected I had the condition and hence why I was in my Town Library when I read this. SO I was reading several paragraqphs that were me to a 'T', or in a nutshell, which finshes off my telling me that, after thirteen years of asking, the two drugs I was consecuriveky prescribed were the only ones that worked!!
This was Black's Medical Dictionary! The GP that precribed those two drugs refused to give me Oregabalin and gave me Amitriptyline that I was convinced would ntot work but did. So imagine my horror and suprise whan I saw only these to listed as the only ones out of dozens of drugs to have an effect?!
Coincidence? DUMB-ARSE!!
Now if you recall I did state that I met with my latest Doctor and he told me I was right and no fool and that the reason that I was refused Pregabalin was because it was an expensive drug and the treatment for Fibromyalgia was expensive?
However despite these things being said to me I always keep an open mind. Unlike some people and I did state that my new GP stated this fact. According to this author the drug is cheap and Cannabis should prescribed? However I think it should be Sodium oxybate.
So what do you think that the chances are that you are lied to so that yu are not diagnosed to stop you claiming DIsability? Idiots should not read this as claiming Disability money under false pretences as I have no used these words in which case it should be taken as it is written.
I guess this Huaser guy is a big cheese across the pond?
Now what seriously concerns me here is the absolute bad picture that many people paint of the FDA and despite the number of English Doctors, and sorry I do mean English Doctors here, that have a negative view that often delves into sarcasm with American medicine. This is because on the face of it many of our decisions are alrgely based on what America does I am afraid to say.
The author of the webpage titles one section under it The Missing Drug and you would be completely forgiven for thinking at this point 'A-HA! He is talking about Sodium oxybate after all then?!'
Well no...nut oddly there is one other drug that worked for me and despite tellling dozens of Doctors this they would merely roll their eyes at me.
Why it is CANNABIS of course...
For all that the drugs have done for Fibromyalgia (FM), the evidence suggests that none of these drugs are particularly helpful for many people with FM. Dr. John Quintner of the National Pain Report points out that the Number Needed to Treat (NNT) for Lyrica indicates that only one out of ten FM patients taking Lyrica is likely to receive a fifty percent or greater reduction in pain. It’s one out of six for Cymbalta and one out of eight for Savella. That means only a small percentage of FM patients can expect their pain levels to drop really significantly on these drugs.Here is hot this is started off and the drugs they mention, remember Mr Idiot that I have had two of these drugs and that they worked and about to be prescribed a third ...
“Pregabalin, duloxetine, milnacipran, and amitriptyline are the current first-line prescribed agents but have had a mostly modest effect. With only a minority of patients expected to experience substantial benefit, most will discontinue therapy because of either a lack of efficacy or tolerability problems.” HauserNow please note here that I disagreed with my last Doctor, Dr Gubbay at Abernethy House, who stated that all these drugs are the same and are all just painkillers? You might note from the above list that there are a fair few missing? Painkillers that is, after all they are all the same! The truth is even the drugs above are not all the same. Also note that he disagreed with me oin this because I stated I wanted Pregabalin as it was a modern, better and intended replacement for Gabapentin. He disagreed. Well note that Gabapentin or its brand name of Neurontin appears to be missing? Also note that they state 'first-line drugs' given for Fibromylagia? So where was my fecking Pregabalin? Pregabalin's brand name is Lyrica by the way.
Of course this could have been refused as it might have lead me to Fibromyalgia as I was unaware of my own condition at the time.
Please remember that a very noticeable effect of two consecutively prescribed drugs were list at the bottom of an articale where I had read of around a couple of dozen of my own symptoms that stated these were the only drugs known to have an effect on Fibromylagia! I had already strongly suspected I had the condition and hence why I was in my Town Library when I read this. SO I was reading several paragraqphs that were me to a 'T', or in a nutshell, which finshes off my telling me that, after thirteen years of asking, the two drugs I was consecuriveky prescribed were the only ones that worked!!
This was Black's Medical Dictionary! The GP that precribed those two drugs refused to give me Oregabalin and gave me Amitriptyline that I was convinced would ntot work but did. So imagine my horror and suprise whan I saw only these to listed as the only ones out of dozens of drugs to have an effect?!
Coincidence? DUMB-ARSE!!
Now if you recall I did state that I met with my latest Doctor and he told me I was right and no fool and that the reason that I was refused Pregabalin was because it was an expensive drug and the treatment for Fibromyalgia was expensive?
However despite these things being said to me I always keep an open mind. Unlike some people and I did state that my new GP stated this fact. According to this author the drug is cheap and Cannabis should prescribed? However I think it should be Sodium oxybate.
So what do you think that the chances are that you are lied to so that yu are not diagnosed to stop you claiming DIsability? Idiots should not read this as claiming Disability money under false pretences as I have no used these words in which case it should be taken as it is written.
I guess this Huaser guy is a big cheese across the pond?
Now what seriously concerns me here is the absolute bad picture that many people paint of the FDA and despite the number of English Doctors, and sorry I do mean English Doctors here, that have a negative view that often delves into sarcasm with American medicine. This is because on the face of it many of our decisions are alrgely based on what America does I am afraid to say.
The author of the webpage titles one section under it The Missing Drug and you would be completely forgiven for thinking at this point 'A-HA! He is talking about Sodium oxybate after all then?!'
Well no...nut oddly there is one other drug that worked for me and despite tellling dozens of Doctors this they would merely roll their eyes at me.
Why it is CANNABIS of course...
The survey found that one drug, however, was quite effective at reducing pain in Fibromyalgia. The catch is that it’s not, for political reasons, readily available to many people in the U.S. for use or even for study. In an astonishing reversal of the findings for the ‘big three’, over sixty percent of FM patients who had used medical marijuana in the past stated it was very effective at treating pain. 33% said it provided a little relief and only five percent said it provided no relief.I stated for years and have written of this throughout the life of this blog. If my memory was better I would have looked into a link between Fibromyalgia and Cannabis a lot earlier. In fact if I had one single raised eyebrow from stating Cannabis helps from one of the three dozen incompetent idiots that should ne be Doctors I would have looked up a list of all the things Cannabis is used for medically and would also have discovered Fibromyalgia years ago.
In which case I would never have found out that the NHS is corrupt and lies and misdiagnoses patients deliberately so they can continue commanding hudreds of thousands of pounds in salaries each paid for by tha taxpayer they never deserved.
In a nutshell Dwayne Dibley.
I am not currently using Cannabis, have not for a few years and releuctant too because I do not want to start smoking again! However I did manage to quite smoking before and only smoke Cannabis and in half the time that I have currently quit smoking.
Also as many of you know and a fact that will drive Mr Dwayne Dibley up the wall and down again is that this is ... very much about to change.
For along with a number of back up blogs this back up blog 'is my shit' and that one of the very many purposes of this blog was to make money eventually. A lot! Hahaha, moron. Added to this this would then make money until the other blogs all caught up.
After all I really could not continue my endeavours on forever! There would be a time when I ran out of reasons to create events or appointments where I could acquire more evidence, somehing I have stated before that quite possibly made someone else angry because they misunderstood what I was stating. Or perhaps they just thought I was continue on my putting up links to people making very bold claims without a shred of evidence by people thay had never met?
Nope despite the name calling by the idiot I refer to as Mr Dwayne Dibley the sole reason this blog has bene popular and successful and becomes more so every month is keeping it level headed. Because I always have been, depite what some thought. I simply had to acquire everything I needed to prove to everyone online that visited that tehse were in fact the events that took place and to prove to those I know OFFLINE that everything I ever said ore predicted for many years was true and based upon facts.
Thereby removing the possibility that shrinking violets with their heads in the sand, or just jealous, will try to deter others by flinging about accusations like a moron while not wanting to face the truth holding their fingers in the ears goin 'LALALALALAAAAA!!!!' while their heads are buried in the sand.
The nxt in the list of people I do not like after cocky know it all bullies with mental problems and liars holding positions of Health professionals or Doctor along with politicians. I mean there are mental problems and then there are mental problems with the worst kinds of personality with a bully-boy nature thrown in who cannot live with the fact he is gay! You ever wanted a recipe for destruction in human naature, he is it! Forget the book a solicitor said he could write about Basil Falty, lol.
In no particualr order of course!
The link to the statements I listed above and the author who made them ...
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