NR Times

Completely unexpected, a new magazine plopped through my letter box this morning. It was a copy of Neuro Rehab times from the UKABIF.

Did anybody else get a copy ? There are quite few interesting articles that may be of interest to people on this forum:

- Effects and testing of hormone deficiency post injury why standard blood test fail

- Benefit of Canabis derived products post BI

- Music therapy and BI

quite a few more snippets. I can post some summaries if people are interested

30 Replies

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  • Please do Sos ; I'm wavering on the cannabidiol as I'm uncertain about the origin of any particular product whether in health shops or online.

    I've drawn a blank on treatment generally and thinking more & more about trying the cannabis oil ; there are such glowing reports about its benefits. xx

  • Ok, will do. There was a few comments on the "legitimate" version of Hemp a while back. In the NR times they have found some promising results for head injury survivors in terms of relief from pain, migraine, depression and slowing down cell damage just after injury.

  • Yes, I'd pinned my hopes on a hypopituitary issue and saw an endocrinologist earlier this year, but all's come back normal and symptoms have ultimately been attributed to menopause.

    But be interesting too see, also, what's been said on that subject regarding the blood tests. Thanks m'dear ! xx

  • Cat

    I too had pinned my hopes on the hypopituitary issue. I was 47 when I had my accident and still having regular periods, my head injury brought one on and then pretty much nothing after that. I had a blood test 6 months later, which the receptionist told me was normal, but then the next time I saw the doctor he told me I was post menopausal. I'm sure that doesn't happen in 6 months. I tried to persuade him to refer me to an endocrinologist, they told him what blood tests to do. when they came back I was told they were out of the normal range, but not far enough out for them to do anything about it. I'm convinced lot of the symptoms we get are done to hormonal imbalances. I'll be tracking the article down. I also paid for some tests on adrenal and cortisol levels which came cacknout of range, but the doctors don't seem to pay much notice to that either.

    Sue

  • If I get time later I will try and put a summary up.

    But what they did say was the standard tests undertaken by the hospitals aren't sensitive enough for what we want.

    The consultant suggests that all significant head injuries should be be tested for endocrine imbalance. However, he does admit that this would be impractical for all injuries due to limit resources :-(

  • Thanks :-)

  • Yes, it is really down to limited resources. I had a battery of blood tests performed at the beginning of this year which showed a marked rise in calcium and other raised markers. I saw the Endo Consultant three months later, and have had all the relative scans and bloods repeated. I'm due to see her again next month. Watch this space!

    At the Neuro Conference held in London last month, one of the Neuro nurses confirmed my suspicions about endocrine problems following any type of brain injury. She had quite a bit to say on the matter, but one thing especially stood out...the brain has a blancmange consistency and any bleed, concussion, shaking, etc, had an immediate impact on the endocrine system, sometimes years down the line. She said in her experience, endocrine problems were rife!

    My bleed happened in the occipital region with pooling in the circle of willis. A leakage of blood in the brain is highly toxic to tissue, therefore, why is it not obvious this directly has an impact?

    I think to date, I am still the only patient at the surgery who has had a subarachnoid haemorrhage, and funds are siphoned elsewhere.

  • No need to waver ;) cannabidiol/hemp is very safe with no drug-interactions, I've been taking it for a few months and can report better sleep quality and it has pain relieving effects for some and since pain has a psychological component it possibly may help other aspects of psychology like mood. This is definitely a worthy addition to your diet. You want to try hemp with 5% CBD and up to about 10 drops a day under the tongue, for better sleep try at night. I'm using CBD Brothers blue edition which you can buy in 10, 30 or 100ml. 10ml lasts about 3-4 weeks. Store in a fridge. I'm using a 30ml bottle which should last 2-3 months.

  • I'm wary about the quality/authenticity of anything medicinal bought online. Where do you get your supplies of hemp & CBD Barny ?

  • There are some products on Amazon

    or you CBDBrothers.com

  • Just placed an order with CBDbrothers for 10ml blue edition.

    To be continued...................... x

  • hi cat i prefer the cbd oil capsules from cbd brothers i find the blue oil rather bitter and a earthy taste when taken as barnysaid under the tongue i suppose a matter of personal choice it works for me no more headaches a better nights sleep and lowers my anxiety level al in all for me just positive results

  • Thanks for that Spark. I've ordered the minimum amount so if I have a problem I can always change to the capsules later. But my taste is so corrupted since the SAH that I'm used to nasty tastes, even from some of my favourite foods !

    I'll let you know how I get on after the first month. :o x

  • As fedupspark says it has a very earthy green taste but so long as you leave it under the tongue for a few minutes (they recommend 3 mins) it mixes with saliva and is more easily absorbed (via the tongue or digestive system?). Don't try to mix it in a drink because as it's oil it won't mix and you'll end up with a slick-fest. Swivel with a glass of water straight afterwards and swallow.

    I'm sticking with oil for now as the process of placing the oil into tablets makes me think it may lose some of it's value?

  • I can understand your concerns, especially as it's not something you'd normally take, but it's no different (in terms of safety) to taking spirulina or wheatgrass which some take for health benefits without a second thought. The only side-effect may be sleepiness as it can have a calming effect on the nerves. The cannabis plant is selectively bred so that the THC is very low whilst the CBD is preserved to produce what is called 'hemp' that is legally grown across Europe. Beware, some products labeled 'hemp oil' contain no CBD which can be confusing, and is not what is colloquially called 'CBD oil'- avoid. Make sure it contains cannabidiol/CBD and preferably a decent strength like 500mg CBD per 10ml bottle or 5% CBD (or 25% per 2000mg CBD Brothers blue edition - yes confusing but they're equivalent measures)

    CBD Brothers I've found give the best value for money especially as they sell larger sizes besides the typical 10ml. You can buy off amazon or on their website cbdbrothers.com (which is slightly cheaper), search around for a promo code before you buy as they sometimes have discounts.

    Hope this helps....

  • It's direct from CBDbrothers ; they have a notice on the site saying that Amazon are presently refusing to accommodate them.

    It's in the post and should arrive tomorrow. I'm anticipating a wait of two-three weeks, then a very subtle reduction in stress level, and hoping that reports of no interaction with other meds are true.......................... x

  • Hi, I've never heard of them so thanks for mentioning. How did you come to have a copy of the Neuro Rehab Times? Are you registered with them? I'd like to get my hands on a copy. I'm interested in understanding hormone deficiencies (endocrinology) in post injury, as I'm carrying out my own investigations. The slowness of NHS referrals is starting to wear very thin.

  • I am registered with UKABIF.

    The article is very good, it goes into the different types of hormonal imbalance in men and women post injury. Interesting you mention endocrinology, as they infer that a lot of GP's just do normal blood tests for hormone imbalance which don't detect the subtleties required post head injury.

    Will post some of the content soon

  • O'h that would be good, thanks. I might have a mosey on the website and register too.

    My gp's keep retiring, and now there's no-one left I trust enough to understand the endocrinological effects post-sah/brain injuries. I'm not sure your average gp has any in depth knowledge on this. Its important to carry out your own research as well. I'm presently referred to an Endo specialist and undergoing tests. Its just a waiting game to get back in to see the specialist. Meanwhile the fatigue is worsening, and I'm considering giving up work. If you've a few thousand to splurge, well of course, we'll see you this afternoon! Same ol' rubbish!!

  • One of the articles pointed out that you can get a localised form of "diabetes" within the brain post injury. This causes the sensation to pass lots of fluid which in turn makes us thirsty and round we ago again.

  • Yes please! Always interested in alternative pain management!

  • Hello again...I've just spoken to the Helpline, and they are sending me a copy too!! Thanks very much for bringing this to our attention.

  • No problem, happy to help

  • Hi again Sospan

    I meant to say, its available on-line to anyone, its the online i am going to copy and listen to.

    Jules

    x

  • Hello Sospan - jules here

    I got a copy too - no idea where from but interesting im not the only one here.

    I cant read it as it makes me feel sick with the words, but i am going to use the thing on my computer that if i copy it then highlight the text it will read it out loud for me.

    Hope you and my other friends are doing ok.

    I'm making progress some weeks then 10 steps back.

    Big arguments going on between me and my husband nearly everyday. I'm ok thou.

    Love

    Jules

    x

  • How lovely to hear from you again Jules, hope the progress continues with less steps back.

    Jan xx

  • Me too Jules ! xx

  • Aww, Jan and Cat, thats really lovely.

    Jules

    x

  • You're welcome. We miss you.

    Jan xx

  • Thanks Sospan, will be registering with them also. Had never heard of them,

    Have given up on all the GPs I've seen also.... lost count . Have learned more on this site from you all in a few months than years of trying to get help from GPs... i don't bother now...

    Thanks again.

    TN x

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