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exactly the same with me too, re Ivabradine. :)

@voner I took I typed up sheet of paper with lots of notes on it all about my pain and as you said, described the different types of it. But honestly the pain specialist never mentioned anything that I wrote. I tried to be assertive as possible, and I had two people with me, but I just came away...

Hi everyone. I'm generally taking a break from the forum, but just wanted to come back to update people as I’ve had my pain appointment. Before my appointment, I tried gabapentin (very bad side effects) and codeine (side effects and didn't work). I started nortriptyline and workEd my way up to...

Hi Natalie thank you, OK shall I contact you in January 2021, or would you prefer a sooner or later date? I have spoken to my boyfriend about it. He is very happy to help and happy to hear about this project. He says he could help with posters, raising awareness of the event etc and speak to...

Yes it can be the fault of the CCG or someone higher up, my GP has told me that before about not referring to other hospitals - I’ve been told it’s too expensive. Same with Some pain relief. Funding cuts are to blame in many cases definitely. But the end result is the same :(

I understand as I feel the same to. I've had stomach problems all my life but recently they've got worse in my upper stomach, also loose stools and pain. The GP refused to refer me, saying I need to take hi strengthPPIs for a few months before they even consider it. And even then, only refer me...

yes except in the same article - the ARPA which it would be modelled on seems to have morphed into defence research. That’s not helpful for ME research. “ARPA was founded in 1958 and helped create ARPANET, an early version of the internet. It was later renamed the Defense Advanced Research...

Also maybe interviews or features In TV and newspapers! Both broad sheets and tabloids. They are powerful things.

I agree with some of the other replies here in that I don't think word-of-mouth and social media will be enough. I think a coordinated effort to reach every GP and hospital, Ie doing it through healthcare settings, may help to get that number of people to participate. Especially as GPS will know...

woolie would it be ok if I sent you a PM? One of the parts of my ME is severe reactions to the flu jab - I’ve deteriorated rapidly after 2 flu jabs, as well as having an reaction within 24 hours to them, to the point my GP practise nurse has told me to stop having them. I’ve recently been...

As pots is a form of orthostatic intolerance. I told my symptoms to my cardiologist and said I feel much better lying down, and much worse sitting up as well as other symptoms. And that's what led him to investigate me for pots and tachycardia conditions. I think it would help so many people...

I agree. And also perhaps OCD, I have suffered with both. I would find it very difficult with this sort of labeling.

Yes I do wonder weather there's lots of subtypes and groups even within the banner of me and pots. I do wish pots was studied more!

I think this can occur in pots, I don't know if that's part of what you have, but I have heard from others people with pots say that if they're sitting up right, they need to wiggle their legs around. Same with standing up right, they need to move the legs or much on the spot sometimes.

I was unable to do a tilt table test as cannot put weight on my legs. I had just a holter , BP testing and an echo done. I think a holter monitor And BP testing with activity diary - which is what I did - could provide more clues than just the tilt table test. ETA although I do think a tilt...

@Blueskytoo I agree with the message above on having a look at that website. I have the same issue is you. Although I am not on anti-hypertensives yet, I am on Ivabradine which specifically reduces heart rate for hyper PoTS/IST which ironically helped with the blood pressure as well- I don't...

London - imperial college london

did he expand on what autoimmune diseases and especially what chronic infections they had found? It would be useful to know as outside of the NIH I doubt many of us are getting tested for these things.

Oh dear I can no longer have coffee tea or chocolate. It gives me panic attacks and with weird heart issues. However I do drink white hot chocolate. It's divine if you like white chocolate.

@Jonathan Edwards you have explained that CSF is produced in the brain and then reabsorbed in the subdural brain skull space. But How does the CSF then reach the spinal column (for example when taking a lumbar puncture in, it is taken from the spine) and howdoes CSF move around the spine? Is the...