Aināt that the truth!
Yes Iāve been to that clinic. Best of luck.
Itās such a pity these doctors lack sufficient experience with managing the ultra sensitive to meds type patient. Itās also a pity they donāt read around their subject and in many cases seem to lack interest in their subject. I think thatās where the few score over the many. Most never manage such cases and see them through to closure to gain further experience and find out whether their suggestions because with meds thatās all they are is suggestions, ever actually worked. Too much theory, not enough practical experience. I think thatās one way the US might score. The big clinics get huge footfall.
With regards to your Venlafaxine experience Iāve spoken to others on here who had very similar experiences. One full 37.5mg dose knocked them over. When they tried a second time starting with a third a tablet and increased gradually over three weeks, as per Dr Hainās website instructions, they were fine and it worked for them. Obviously you werenāt to know at the time that you were possibly one, but for people ultra sensitive to meds trialling a new drug whilst working isnāt a realistic option. Time out is needed to adjust. After all these drugs are quite literally messing with your brain Altering chemical levels.
Oh not out West it isnāt. All these specialisms are small worlds. The doctors all know each other and interrelate. And the consultants all recommend each other for second opinions too. Out West they all share the same hymn sheet but they havenāt added Venlafaxine to it as yet.
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Hi Nicola
I am on the exact same regime as you - I have just increased to 120mg Propanolol in the last few days - may I ask were you able to find a 120mg dose in extended release? Itās not available here in Ireland so I have to take a 1 x 80mg capsule and then open another capsule and count out half of the beads. Do you recall how long you were on 120mg before u could say you are at 95% - I ask this because while I am doing well I am not at 100% yet and was contemplating an increase in the Propanolol.
Hi Mav,
I take 80mg slow release then 4x10mg not ER, I did double up to 160mg but my hair started falling out so we decided to build up slowly, I was in 120mg by 2 September and 150mg Venlafaxine I started in Jan 2019. Looking back at my diary it seems I was pretty much clear by mid October last year. I think the lowest form of EX propranolol is 80mg if memory serves me correct that why I initial double the 80mg. Hope it works for you, my Neuro said the combination is one of the most successful its defiantly given me my life back I can even do HIIT classes and go to shops where the lights used to really bother me now Iām fine, I guess one thing I always did as well was challenge my vestibular system with things I knew would be a trigger, I think of it like a muscle you have to build it up it will hurt initially but your body becomes used to it again and desensitises.
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Indeed, had I known I would have tried Dr Hainās method - if only other doctors had the common sense to suggest this. Perhaps I would have been able to walk!
If the doctor recommends medication today, I think Iāll stray away from Effexor for the time being and keep it as a back-up/second try. Iām terrified of tapering off Propanolol 
Nice! Is that where you carried out your entire treatment?
It was the main location and they can take credit for the Amitriptyline prescription and the psychotherapy which were game changing. They were also super lovely people.
However they were unable to explain my condition and onset and I found this deeply disappointing so I moved to Harley street where I found someone who could.
Weāre starting to get off Topic here though.
Which doctor(s) did you see there? PM me if preferable.
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They have no idea that it would be necessary so I doubt it would cross their mind. And besides Common sense is nowhere near as common as the term might suggest. Most doctors have no appreciation of VM/MAV itself yet alone its accompanying sensitivities. Also manufacturers donāt advise opening capsules so I imagine there would always the threat of impending legislation, negatiion of insurance etc etc, even if the situation was fully appreciated. Doctors need to include feedback/customer satisfaction into the equation before anything much will improve. I read somewhere only yesterday many doctors feel migraineurs have a strong tendency towards catastrophising so, if thatās how sufferers are seen, adverse reactions to drugs may well be ignored.
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