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 thatās a hell of a long time. If I find I canāt tolerate it, iād still have to wait until October to see him. And they wonder why chronic migraine patients are depressedā¦
I think the NHS has - officially or otherwise - āabandonedā their time limits on treatments so I guess if itās 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 couldnāt 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 appointmentā¦ I love my Headache Specialistā¦shes just great x
2 Likes
Yep. āEvery (unwell) Head Should Have Oneā. Unfortunately, they are rarer than hensā teeth. Helen
1 Like
Yeah I requested a copy of the letter, Iām 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 secretaryās number. He told me to trial the medication for a month and if I could tolerate it to call his secretary and theyād arrange another prescription. He didnāt say what I should do if I didnāt tolerate it. Iām waiting for a referral to an endocrinologist as well, so i assume he doesnāt want to try any other meds until Iāve seen them, and that could be several months wait. I assumed that he wouldnāt 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 donāt 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 Iād ring either way at the end of the allotted time. And I think it best not to āassumeā anything ever when it comes to this sort of thing. You cannot know his intentions so never āassumeā most particularly if doing so leaves you at an obvious advantage. He wonāt 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
2 Likes
Then why donāt they tell you instead of assuming you know what to do? This is the first time Iāve ever been under a specialist in my life. I didnāt 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
1 Like
Thanks. I donāt 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
1 Like
6 monthsā time is a long timeā¦ 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 ?
Hi
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
Jo x
1 Like
Typical postcode lottery. Whereabouts are you?
Oh. Thereās nothing āNationalā 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 donāt acknowledge MAV exists and GPs ādabbleā (my GPās 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 Englandā¦good job i do by the sounds of it. I cant believe how some have no way of contacting their specialist
Jo
And alot/many? In UK (like me!) havenāt 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 Iām sure long term would save NHS money. It works well for heart patients too I know from a friendās experience. Trouble is NHS isnāt 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
Jo
Hello āfellow pea in the same pod Jo, my GP always say and repeats endlessly parrot-fashion and ad nauseam āyes, but you are a ācomplicated caseā. As scientists Iād have thought that might Iād get more attention, not less but apparently the exact opposite actually applies. Helen
Ilive in the North West. Iāve only seen the headache specialist once but i was really pleased with him, he was very friendly, very understanding, we got on straight away. Thereās usually a distance about them that my personality doesnāt sit well with. I usually donāt 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, Iām quite an artistic sort of person and my personality is often at odds with sciency people. Thatās really generalising and stereotypical but iāve found it to be true mostly. We arenāt seeing the world eye to eye. My gp is competent but sheās a bit terse and distant. She canāt help her personality, itās not like sheās 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 āThat must be miserableā or ālike being on a boat? Yeah thatās horrible.ā He made expressions that suggested empathy. When he examined me he diffused tension with little comments, like when he lifted the bed higher āgoooing up.ā Some people would hate that and think it childish maybe or that heās 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. Iād hate to talk about mental health with her. To her credit, sheās a good listener and is very thorough. Just a bit stern.