Hi Don and thanks for the belated vote of thanks.
Sorry to hear your son Robbie is struggling once again. Or maybe he just never stopped. He may have to face the possibility he’s bitten off rather too large a chunk of stress in his career choice to be compatible long term with his condition. Unfortunately He wouldn’t be the first person to have to rethink his career choice because VM got in the way and I’m sure he won’t be the last.
With this condition expectation management is rather important. If Robbie was expecting that there was some sort of guarantee that as soon as he hit a certain drug level it would all simply ‘Go Away’ he could be in for a huge disappointment. For many people it’s a chronic, ongoing, long term condition. As you say maybe doctors preach hope. I don’t know. I do know no doctor has ever told me it would go away. None have ever told me it wouldn’t either so maybe you are correct. I found generally they prefer not to discuss it at all.
Doctors obviously aren’t expecting any miracles if I tell you that the criteria for ‘success’ of a preventative medication is set at 50%. Thats a 50% reduction in frequency, duration and intensity of attacks. That’s considered a successful treatment. On a personal note I managed 3 years six months attack (but not symptom) free period from the time I started medication. The doctors were astounded. Looking at it that way the term ‘preventative’ really is rather misleading term.
I’d suggest that now is the time for you, as a family and that particularly includes Robbie, take some time out to really begin to understand the condition he’s suffering with. To truly get to understand it. It can be got under a certain amount of control by various means, medication being the one he’s attempting currently but look or maybe look again, at the rest of the treatment package. That includes diet, lifestyle modifications (from sleep hygiene through to, most importantly, stress reduction). So far Robbie has been lucky. The meds must have helped enormously or he’d never have mastered all that teaching. Unfortunately all that stress isn’t helping. Suggest reading the forum’s Wiki pages and most particularly the FAQ document written by several top US specialists. Not only will it give you many tips it will also give you more of an idea of what Robbie is dealing with.
Wherever you go it will just be ‘more of the same’ I’m afraid. That’s all there is. Whoever you see in mainstream medicine treatment always comes back to the same regime. The same treatment plan. Take preventatives, and adapt the other lifestyle changes, try the migraine diet, take supplements (used far less in U.K. than other countries this latter). There is no ‘cure’. The root cause is unknown still as yet. Doctors in general practice and most specialists simply prescribe according to the U.K. NHS Guidelines which are out there on the internet for anybody/everybody to access and which take to try Topiramate, Propranolol or Amitriptyline. To illustrate how closely doctors follow these NICE Guidelines you only need to know no doctors in my own practice are aware of the new injectable migraine treatments simply because although now (just) available on the NHS they are still only licensed for use in specialist clinics and GP/s work on a need to know basis only. There are a very few balance centres and few specialists in London such as Dr S, Dr Nicholas Silver in Liverpool who use a wider variety of preventatives and offer case management but there’s no magic cure.
FAQs answered by Neurologists
Providing your trust levels on this site are sufficiently high which owing to your long absence may unfortunately not currently be the case.
This one too might give you some ideas of what else could be done, apart from medication, to help Robbie obtain better control. And it’s nice and brief too.