I too enjoy regular meditation, often for the same reasons you do - to remind me to love and forgive myself as I so easily do for others.
I did find one way the author’s mindfulness in the thick of it was helpful. MAV likes to play my autonomic system like a harmonica - jarring and thoroughly unwelcome in all circumstances. (I might actually like MAV better than harmonicas now that I think about it.) I will get cold and clammy and shaky or hot and sweaty and restless for no apparent reason. I’ll get palpitations like my heart is attempting to flee the scene via my esophagus. And, sometimes when I’m asleep, I’ll lose the rhythm of breathing. I’ll have a dream that I’m being choked or drowning and wake up short of breath and trying to inhale and exhale at the same time. I don’t think it becomes a panic attack until afterwards. The mindfulness bit reminds me to do breathing exercises - pulling yet another mindless autonomic process into the executive function until I can reestablish the rhythm. Only then do my emotions stutter and leave me wide eyed in the dark. I can and do use mindfulness in the form of deliberate breath control to get my heart back in my chest, beating slowly in pace with calmed, ordered breaths.
But if I focus on dizziness, nausea or pain, that totally not a psychological problem quickly amps up into one, plus the physical problem. It just adds a multiplier to however shitty I felt before. In those cases mindless distraction is the best cure.
This book was the first one I read after being diagnosed with VM. I found it very useful. The only thing I missed was a paragraph (or more) on Pizotifen. But apparently it is not used in the US, so it is understandable why he did not include it in the book.
Does this book talk about anything to do with the gut and gut healing, leaky gut, gut dysbiosis or even l-glutamine? I haven’t read it since I found what works for me but I still haven’t found any books that specially talk about the gut is related to histamine triggered migraines and other muscle gut problems relating to l-glutamine.
@Katharina thank you. So he doesn’t cover healing with the gut, a cause of vestibular migraines and histamine related problems, that is unfortunate, maybe one day he will.
Must admit to being surprised that purchase of this book - on in fact of any book - was a recommendation in the consultant’s report. An endorsement for the book no doubt but …
The most recent specialist I’ve consulted suggested staying as I currently am might be an option …
She wrote
”therefore it may be an option to accept symptoms as they are and try to cope and adapt your lifestyle around them”
And, in order to achieve that, she suggested this book. I’d rather hoped she’d come up with a management plan.
Rather disappointing as you say. Find another one? Where’s that ‘cynical face’ emoji - can’t seem to find it.
When I comes to what to do with me. Nobody does K. Nobody does. If she doesn’t know where to go next nobody does. That was my second neurologist and an ‘expert’ from a Migraine Centre. I’d waited more than six months for the appointment and then only got it very last minute as a cancellation. Since this started I’ve seen at least four different ENTs, one Neuro-otologist, two specialist neurologists, three audiologists, three different eye surgeons (designations currently evade), one audiologist/VRT ‘expert’, umpteen Family Doctors, numerous physiotherapists, not to mention all the ‘Alternative Treatment’ bods from homeopathy to Alexander Technique and some. Where I live we are ill served with medical resources. More tractors and cows than people and the few that are available are mostly private and expensive to boot.
Wow - that is a LOT of people. That is very sad that none could help you! I don’t know what to suggest apart from don’t give up. There must be someone out there, there just must be!
Oh a few did actually help me most particularly to eliminate all the ‘red herrings’ etc and I eventually received a diagnosis (a couple now in fact) and the prescribed meds work up to a point. There is no cure so it’s just a case of management so I’ll order Dr Beh’s book and read it. Be interesting to see if I can learn anything new from it that I can implement. Meanwhile thank goodness for the Propranolol and let’s hope the neurologist is correct about it fading with age. IMO That’s the only hope of a complete recovery. The rest is damage mitigation.
It’s all damage mitigation with the possible and only partial exception of the CGRP Drugs and those only work in a quarter of people. Botox is keeping me functional with heavy helpings of Ubrelvy. Botox just smothers the fire, nothing puts it out. Without those two I’m disabled at best, catatonic at worst. Do you have any options to try the injectables?
None whatsoever. The previous Neuro I saw wasn’t at all keen on promoting them in my case, not at all. The latest hasn’t even mentioned them to me. I wondered if they would be her chosen route but that was not the case. I would have to find an NHS neurologist prepared to do them and pay the full amount myself - minimum £400.00/month (500 US dollars?). I’d have a problem finding the neuro. Moneys not the problem.
I never realised the ‘success’ - if that is the right word? - rate was so low. Lower than oral preventatives which I understand is about 50%. In fact 50/50 with any individual drug and if you factored in the choice available - I’m no mathematical genius - but surely that would be more than 25%.
The book arrived yesterday. Lovely big type which I’m sure will be appreciated. Wonder if that was pre-planned by Dr Beh. Did wonder whether an audio book might have been a better option for some. When acute I certainly couldn’t have tolerate any reading whatsoever, Certainly a book that will fill a huge gap in knowledge. I’d certainly recommend it to any struggling longer-term MAVer and those struggling to find medical support in places (like much of the U.K.!0 where knowledge of the subject is minimal. I’d love to be in a position to make it compulsory reading for U.K. family doctors. Oh, I wish. It is good that there are younger specialists with such a great interest in the condition.
I am currently reading Dr Beh’s book for the second time. He has an interesting view on whether VM is a genetic disease or not on page 30-31.
He differentiates between people who have a high, moderate, low or no genetic disposition. People with a high genetic disposition, in his view, are most vulnerable to migraines whereas people with no genetic disposition are unlikely to get migraines. For people in the moderate disposition category, traumatic events or stress can trigger migraine attacks. People in the low genetic disposition category may require high stress levels together with multiple causative agents to push them into migraines.
I think that this is an excellent explanation. And it is also more sophisticated than just to say “VM is a genetic disease”.
I am probably in the “low genetic disposition” category, since I had no problems for about 55 years. Then a few stress factors moved in and it tipped me into full-blown VM after my best friend died unexpectedly last year.
I could say much the same however what about resilience for that must play a huge role too. Though presumably that too can have a genetic predisposition. I’m talking medical rather than emotional resilience here, the body’s natural ability to counter attack from not only viruses but other conditions. Predisposition to that must vary too. It’s all fascinating stuff. Dr Beh’s book is a good read for sufferers. Full of probable/possible explanations for various Common Symptoms we experience. It would be great fun to have him in the room or even on a Zoom call for a further Q&A.
But the Author doesn’t go further to explain what happens like to substances like l-glutamine. When our body is more stressed or how l-glutamine production decreases as we age. If you have food sensitivities or triggers and migraines, then one ought to look at l-glutamine and even leaky gut. See when our body is stressed it uses more l-gluamine which is needed for intestinal permeability in good order. I’m sure there’s more to it but l-glutamine may play a big role in this. There are also other substances that keep intestinal permeability in good order but I have not researched those as much yet.