My Fellow Suffers.

This is beautiful, Susan! - Thank you so much for opening your heart and mind to give of yourself to others here! We are lucky to have you with us. What a relief it must've been to finally have received a proper diagnosis after years of suffering and receiving improper treatment. You represent hope. May I ask you to share here which CGRP you've found that is giving you such success? Warmly - Holly (team member)

Hi Susan! I enjoyed this little peek into your early life with migraine. How strange to have gone for so many years without a diagnosis. What finally changed to get you the answers you needed? Did you suspect for all that time that it was migraine? I also wonder if you were able to gain any insight from having a parent with migraine.

I am frustrated for you and for the suffering you endured to get to a place of stability. But more importantly, I am grateful that you *have* found your diagnosis and something that helps. Better late than never.

Glad you're here! -Melissa, team member

Hi again Melissa.. I will willingly answer your questions.
My answers may surprise you.
I went 60 years until I had a diagnoses. Yes 60! As a child I remember playing outside and looking up at my mother’s bedroom window seeing the curtains drawn and my father telling me Not to disturb my mother. Back then Migraines were not recognised and were labelled Sick Headaches. So my migraines were inherited.
I remember at school wetting the fringe of my hair as the coolness eased my headaches.
Into my teens Sinus Disease was suggested was the course of my continued head/eye and pressure pain and a repeat prescription of antibiotics was issued. I “Still” have them issued on my prescription to this day.
My diagnoses came March 2021 during the latter days of lockdown. My ears needed syringing but no GP,s were open for a Face/Face and the receptionist advised I went to a pharmacy and purchase a Home Syringing Kit!! Of course we all know not to meddle with our ears so I had no alternative but to see a Private ENT Specialist at Cost. Whilst having the procedure done (and incidentally an ear infection was found) I got talking, said that my Sinus Headaches were getting worse to the extent that no pain killers would work, would force me into bed for 12 hours, nausea and missing my dinners that he suggested I had a nasal camera to check my Sinus,s. I was there and in for a penny and in for a pound I agreed and my Sinus,s were clear. So a head CT was suggested. I was nervous as most people are wondering what might be found but I was Very Brave and agreed. No nasties were found and definitely “No Sinus Disease” so it was suggested I saw his colleague who was a Neurologist.
With Luck my Neurologist worked with me as I in return worked with him. I remember sitting opposite him listening to his words of encouragement - saying he could help me. Saying he could give me a tablet (Triptan) that would work, take my head pain away within the hour. I burst into tears Melissa..
He recognised I did not have pots of money so liaised with my NHS GP and I would get my first prescriptions written “Private” then he arranged for the continuation of my prescriptions to be written on the NHS (Free). This continued for my 3 (Failed) preventatives Amitriptyline Topiramate and Gabapentin (I was already on a Beta-Blocker) We have to have failed 3 preventatives before we get considered here in the U.K for Botox and then a CGRP.
After my 3 failures and severe frustration/desperation he recommended to my GP that I was put forward for Botox on the Free NHS.
I was lucky, I only had to wait 6 weeks for a referral to a Headache Specialist possibly due to still being in lockdown. I failed 2 rounds of Botox. Did wonders for my vanity! - but little else. Then Ajove was suggested. I could only have a 3 month trial before I had to have a review. My migraines/headaches had to have reduced from the required 15 plus a month by a 3rd for me to be able to stay on the plan. So I sat opposite him with my Migraine Diary to hand. I passed.
We have to take 3 monthly breaks after every year to still qualify for further years.
I am now on my 3rd Year of Ajove and am pleased/relieved to say it has been my “life Saver”. Is not a cure, nothing is but has reduced my migraines to maybe only 4 a month to which my Triptan (Eletriptan) works magnificently.
Do I serve all my 3 month break? My answer is No. I ring the Secretary after a few weeks saying I can not manage - my migraines have returned with avengence and she in turns tells the Specialist and I get another another years prescription written up.
I do not agree with that 3 month break - it is only enforced in truth for Funding Issues. We have such a strict criteria here and we have to know how to play the game!
Sorry for such a long response Melissa.
I wish you a Very Good Night.
Susan. xxx

I posted you a reply on the other forum - I hope you received.. if not I will write again.
Good Night.
Susan. xxx