I saw the headache specialist on th 3rd apirl, and he told me i would get a second appointment in 4-6 months time. I was expecting it to be nearer the 4 months. But I received an appointment today for October, in 6 months time. Is this normal? I really hope the medication he gave me starts to work because that’s a hell of a long time. If I find I can’t tolerate it, i’d still have to wait until October to see him. And they wonder why chronic migraine patients are depressed…
I think the NHS has - officially or otherwise - ‘abandoned’ their time limits on treatments so I guess if it’s not all ready, it will soon be the norm.
For your sake I most certainly hope not. That would seem ridiculous. There must be some mechanism whereby you can get a message to him via his secretary by phone/email if this proves to be the case. This is where those mysterious Headache Clincs and Balance
Centres that only seem to exist in certain areas of the UK would come in so handy. I know @jojo65 has access to a Headache Nurse who acts as Gobetween and I know Heart Attack patients have similar arrangements on the NHS. Helen
In my experience this is totally normal.
Did you see the letter that the specialist sent your GP ? I always ask for a copy to be sent to me (as I missed out on medication that the specialist told the GP to prescribe me but no one contacted me about). Sometimes they suggest an alternative treatment if the drug prescribed fails. As OnandOn suggested you can sometimes find out and leave leave a message with their secretary . I actually went along to the headache clinic once and dropped an old fashioned letter addressed to the specialist in with the receptionist as I couldn’t discover any other way to contact them.
As Helen said I have a Headache Specialist Nurse who i can ring or e-mail any time and she will take advice from the head honcho and ring me back the same day with what has been discussed and what the plans going forward are going to be regarding maybe upping meds or even with an emergency appointment… I love my Headache Specialist…shes just great x
Yep. ‘Every (unwell) Head Should Have One’. Unfortunately, they are rarer than hens’ teeth. Helen
Yeah I requested a copy of the letter, I’m still waiting to receive it. At the other 2 appointments I received it in about a week. I missed treatment from a gynaecologist once because they sent a letter to the GP who never read it and they never informed me. I ask to be semt the notes from each appointment now.
@Onandon03 I have his email address, ans secretary’s number. He told me to trial the medication for a month and if I could tolerate it to call his secretary and they’d arrange another prescription. He didn’t say what I should do if I didn’t tolerate it. I’m waiting for a referral to an endocrinologist as well, so i assume he doesn’t want to try any other meds until I’ve seen them, and that could be several months wait. I assumed that he wouldn’t discuss anything else with me unless I saw him at the clinic, I dunno why I assumed that but nobody tells you the usual procedure, if you can call or email them etc. I don’t know if he would give me other treatment without seeing me.
@Jojo65 how on earth did you manage to be appointed a headache specialist nurse?
Then I’d ring either way at the end of the allotted time. And I think it best not to ‘assume’ anything ever when it comes to this sort of thing. You cannot know his intentions so never ‘assume’ most particularly if doing so leaves you at an obvious advantage. He won’t have had any intention for you to sit and tread water for six months. I doubt it crossed his mind, just jump in there and push! Go for it! Helen
Then why don’t they tell you instead of assuming you know what to do? This is the first time I’ve ever been under a specialist in my life. I didn’t know how to contact his secretary until I googled it.
Pass. You could have asked on here. Plenty of knowledge of practicalties around here. Just go through his secretary as needed. Helen
Thanks. I don’t think any active members see Dr Zermansky, or even attend Salford Royal. There are a couple of older posts from inactive members but no one responded to my topics asking if anyone went to Salford or saw the same specialist.
Oh, I meant general Procedure for consultants. All much the same, I do recall another female sufferer who went to Salford but she quit the forum. People are spread worldwide although UK majority on here I would think are from South East. Just a sprinkling from elsewhere. Helen
6 months’ time is a long time… would definitely ask secretary to ask for different med if this one is difficult to tolerate. Have you started it? How are you finding it ?
Well it seems the Headache Specialist and the Headache Nurse come hand in hand where I am in the UK. A bit like Batman & Robin they are the dynamic duo!! Between them they have saved my sanity and gave me some quality of life. The headache nurse can even administer Botox so shes on hand also if needed. She did mine 2nd time round. I feel so lucky to have them
Typical postcode lottery. Whereabouts are you?
Oh. There’s nothing ‘National’ about the National Health Service. West of Reading (and apart from Southampton area where The Uni researcher - name temporarily - evades me has produced some papers, doctors don’t acknowledge MAV exists and GPs ‘dabble’ (my GP’s own words) with migraine preventatives picking one from a short list of three, and wil tell you all sorts of nonsense about it to boot!. Helen
I live in North East England…good job i do by the sounds of it. I cant believe how some have no way of contacting their specialist
And alot/many? In UK (like me!) haven’t a specialist to contact at all. I saw six? Three Eye specialists, Three ENT NHS consultants all to no avail, then, I paid privately to see a neuro-otologist who diagnosed MAV (having had a fight with the GP to get a referral letter) and then, after another fight for same again, I paid privately again to see a migraine specialist but both were just one offs. The arrangement Jo benefits from is ideal and I’m sure long term would save NHS money. It works well for heart patients too I know from a friend’s experience. Trouble is NHS isn’t really joined up. MAV consultants assume very dangerous word GPs know all about treatment once given diagnosis. Unfortunately this is not the case. Far from it. Helen
Absolutely agree!! The couple of times ive contacted my GP regarding MAV he says " you are too complex for me to deal with" so just as well i have my support at the hospital. Anyone who has a GP that gets MAV are far and few between
Hello ‘fellow pea in the same pod Jo, my GP always say and repeats endlessly parrot-fashion and ad nauseam ‘yes, but you are a “complicated case’. As scientists I’d have thought that might I’d get more attention, not less but apparently the exact opposite actually applies. Helen
Ilive in the North West. I’ve only seen the headache specialist once but i was really pleased with him, he was very friendly, very understanding, we got on straight away. There’s usually a distance about them that my personality doesn’t sit well with. I usually don’t speak until asked a question. But i got on with him almost instantly. I think everyone needs a medical professional who gets them, if they are to get the best help. I rarely feel comfortable with doctors, I’m quite an artistic sort of person and my personality is often at odds with sciency people. That’s really generalising and stereotypical but i’ve found it to be true mostly. We aren’t seeing the world eye to eye. My gp is competent but she’s a bit terse and distant. She can’t help her personality, it’s not like she’s dismissive. But i feel more comfortable with friendlier people and i can open up to them easier and thus end up with better treatment as a result. My headache specialist made jokey comments and he responded with compassion to things, like saying “That must be miserable” or “like being on a boat? Yeah that’s horrible.” He made expressions that suggested empathy. When he examined me he diffused tension with little comments, like when he lifted the bed higher “goooing up.” Some people would hate that and think it childish maybe or that he’s not serious. But it made me feel comfortable and confident in him. With my gp, she rarely smiles, never makes a joke, her face is mostly still and serious, no outward signs of empathy. I’d hate to talk about mental health with her. To her credit, she’s a good listener and is very thorough. Just a bit stern.