I was on the NHS with Dr Surenthithan until they closed. He said for some unknown reason that o was cured . I appear to have chronic migraine now with the boat feeling about 80% of the time. Im on Nortriptyline and coming of pizotifen. I requested to see a neurologist who was lovely but didn’t understand migraine variant balance disorder. Im not sure i trust Dr Surenthithan now - has anyone got a recommendation please? Im quite willing to try other medications. Thank you so much in advance - im coming to the end of ju tether, i really want at least some of my life back. Thanks, Alex
Or is private out of the question?
Thanks for the reply. I could probably afford a couple of private but with therapy and medication its going to really add up (my new neurologist wants to see if botox might help - i could never afford this privately). That’s what I did with Dr Surenthithan and then transferred to the NHS.
There were so many of us with him, where has everyone gone to or are you paying privately to see him. Is he worth sticking with and paying privately? He was just all over the place at the end, all my notes were lost and he wasnt really listening to my issues with medications. Nortriptyline worked brilliantly until it didnt and yhe side effects - dry eye balls got too much. Pizotifen, unsure about this except the unbelievable tiredness for 6 weeks when i upped to 3 pills a day - plus the obvious weight gain.
I saw they have NHS neuro-otologists at Imperial and UCL - would it be worth paying privately to see them and then transfer onto the NHS.
Sorry i just feel so lost and abandoned. Does anyone have any recommendations whereby i could be referred to the NHS branch after initial private consultation?
Sure you can do this, if you ask the private consultant nicely. I did this recently for a stomach problem. A good one will offer you an NHS appointment, but it will mean you will need to wait more and have less time with them.
Hi Xandi - I was one of Dr Surenthiran’s NHS patients - I also saw him privately at first and then transferred to his NHS list. I have to say that I only ever got about 5 minutes of his time as an NHS patient and never really got the chance to ask all the questions I had during those consultations. If I have a relapse, I would definitely see him as a private patient again as he did sort me out - via Pizotifen. I am not taking Pizotifen now but if I needed it again I would take it despite the weight gain! That said it might be worth you investigating other options via Imperial and UCL if you have lost confidence in Dr S. Good luck!
Thank you for replying. I’ve contacted him to go privately and see where that takes me, he managed to make it stop once so im hoping he can again. I was the same in our NHS consultations it was a 5 minute session.
Many thanks again, Alex
I am on Pizotifen (since May last year) and I did not gain any weight, except for 1 kg in the beginning. It requires vigilance, i.e. daily weighing and eating less if the weight has increased, but it is manageable. Relentless tiredness was also a problem when I was on 4 pills a day. I then reduced it to three and a few months ago to two. The tiredness is ok now.
Five-minute consultations for an issue that is as complex such as Vestibular Migraine? I would not be very confident about the outcome of this consultation.
Thanks for replying. Ive been on pizotifen for about 3 years now, that coupled with nortriptyline has caused me to add an extra 3 stone. Ive been on diets, the keto. I got to 11 stone - i was eating 800 calories a day abd i lost 1 pound every 2 weeks i was foibg this for 6 months. Somehow my metabolism is screwed. I havent had a weight problem since i had an eating disorder in my teens - over 20 years ago and i was underweight then. Initially i was exercising 2 hours a day so my weight only crept up by 7 lbs. However i now get exercise induced migraines now.
Thanks for the reply though, i think some of us just react differently to these things.
The 5 minute consultation was through the NHS, you get a whole 30 minutes if you pay privately.
Good to hear pizotifen works for you though
I have recently dropped to 2 tablets a day now. The weight gain is manageable. I put on about 5 or so kg but now dropped 3kg by strict eating.
It’s great. I’ve got dizzy symptoms back atm so hope it passes. Not the best time to try and reduce
I presume you live in the south since you’re seeing Dr Suranthinen, so I doubt travelling half way up the country to see someone is ideal. But I see Dr Zermansky at Salford Royal. He can be seen privately although i see him on the nhs. I have always been given plenty of time with him, not just 5 mins, and he is really nice and one of the best headache specialists in the area if not the country. Anyways i hope you fond someone suitable. Best of luck.
Thanks for the recommendation. I went to Salford Uni. I love Manchester, a special place in my heart. Not sure i could do the 4 hour drive for ezch appointment, however it would be the perfect excuse to stay a night and see old friends.
I’ll see how the Dr Surenthithan appointment goes and maybe consider it.
Thanks again, Alex