I've just stumbled across this website and read many of your stories which now make my situation seem no way near as bad!
I've always suffered from migraines since I was a teenager but in July this year, I had migraine symptoms which then lead to me having what I would describe as a short fit, it was probably about 1 minute long and I didn't pass out. Since then I was very light headed and had a migraine nearly every other day, including another migraine which was the worst I had ever had with another 'fit' and ended up in A&E. I went to the opticians and was referred to a neurology specialist by my GP, in the opticians I had a small fit when he shone lights in my eyes.
since then I have been put on Propronalol by the GP.
The neurology specialist has just said migraines, no explanation or anything, just migraines. Migraines. Migraines. I now haven't had a full migraine for 1 month which is better than once a week but I can't go out in daylight without getting a really bad headache and my vision going blurred. Not even bright daylight, dull daylight is probably worse, as soon as I'm back inside or it goes dark, the headache disappears after about 20minutes. I had another Neurology appointment and again oh just migraine ... start taking this medication along side your propranolol.
This is not making any sense to me. Something has changed since July and I'm not getting any answers, its affecting my life and I'm just getting MORE medication. Medication is just covering up the problem and not fixing it.
Does anyone have any experience to help with this? I'm thinking of making another appointment with the optician as he seemed to be more help than the neurologist.
Thanks for reading.
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Roro86
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Roro86...your symptoms are really strange 😔 Aura migraines are affected by light but in 40yrs I've never had one just stop when I've gone into a dark place? I wear blackout sunglasses 24/7 and still it would take upto a week to ease off and go.
I would definitely go back to your optician and see if they can help push you in a different direction from neurology.
No one investigates anymore, neurology just fill you with tablets.
Have you spoken or asked your gp about epilepsy and seizures? It's the only thing that I can really think of that would explain your fits.
I know you don't seem too keen about medication but I would see if you can get off of propranolol or be put on another migraine medication as well, many migraine medications were actually developed to treat epilepsy and seizures so they could maybe help you more than what you are taking.
I hope they get to the bottom of what is causing all of this soon.
My GP was very concerned I had a partial seizure and so did a fast referral to neurology specialist, and it was like he didn't believe me and thought I was over exaggerating that I had the shakes or something. I wouldn't be so concerned myself if I was just a bit shakey.
He said oh it's just your body dealing with the pain. Right but when the optician shone a light in my eye I wasn't in pain but I did have a short fit type thing. I don't no what to call it as consultant said I can call it a fit / seizure as didn't lose consciousness . But since then I have read about seizures that fit my symptoms. Unfortunately the concerned GP has left my practice now so who knows who I'll get next time.
I know it's not ideal, because it can take a while, but persistence is the only thing. I would also keep a little migraine/seizure diary with your symptoms and such and give it to the neurologist if you have another appointment.
I know the feeling of going from doctor to doctor, I've even had one tell me I don't get migraines! The only this I can suggest, as it worked for me, is prepare for your appointment. So type or write up your full migraine history and include your seizures, along with medication, symptoms, what it stops you doing and such. This will help you so you don't miss anything out and the doctor might ask for a copy to keep in your notes so they don't have to keep going back through your past appointments!
Yes I have been keeping a diary, I'm considering speaking to someone to change consultants as he really doesn't seem bothered, Its like unless my head had actually fallen off then he may show slight concern, I know he is the specialist and gone through who knows how many years of study to get here, but maybe if he just gave a few explanations as to why all of a sudden this is happening.
I pretty sure the MRI scan is going to show nothing, is there any difference between a CT scan or an MRI scan? and also what can an MRI scan prove? do you know?
Unfortunately, you have to go through the gambit of medications to see which one or ones work for you. Best is if you have one doctor who can be your guide. (BUT IS HAS TO BE AN ANGLE, NOTHING LESS).
Migraine disease and its associated pain is no joke (THERE IS NO CURE FOR IT) and it is a MEDICAL DISGRACE to have it widely understood and professed by the world as such a mystery(including and especially the doctors themselves who mostly have NEVER EXPERIENCED ONE).
You are responsible to TELL your doctor what works and what doesn't! If you don't how will they know how to treat you. Many medications for migraines have bad side effects, llimitations/cultural/medically demeaning connotations to them. This is done by the very "doctors"who don't understand the Migraines themselves.
They report their "findings" to the FDA who then tells you what you can or cannot take.
EVER WONDER IF ANYONE WORKING FOR THE FDA HAS EVER FELT THE MISERY OF A MIGRAINE? WONDER WHAT THEY DO FOR IT? WONDER WHY THEY NEVER TELL US!
Migraine help/treatments have been around for decades with great success … in the worse cases giving people MOTHERS, FATHERS, CHILDREN, 'THAT CRAZY AUNT WE ALL HAVE WHO NEVER LEAVES HER HOUSE"ETC their lives back. So why does a health agency for heaven's sake, limit or take away such help, which is not expensive or evasive? Because there is NO MONEY in it. No billionaires to invest and make billions more.
So what do we have. Horrendously expensive (mostly uncovered by ins. companies) BOTOX, which is a "purified" POISION derived from a COW! C'MON. So, are we left to sue the company in 25 years with the only hope of our children getting a bunch of dollars and dead parents?
Look up Migraine (sounded out as ME GRAINE) IN foreign countries, like Europe or South America and you'll find Migraine Madness a much less crisis. Why, because simple medications are PERMITTED, allowed, given only by doctors of course but the difference is you are not made out to be a "drug addict" or madwoman or man, don't HAVE TO ruin your family life, watching a movie or living life to it's fullest. Imagine actually put in a category as a "drug addict" - one who seeks out drugs for fun! Why do THIS to us. How disgusting. How disrespectful and evil.
There is so much NEGNATIVE words, innuendoes, doctor neglect,DOCTOR UTTERING DISGUSTING WORDS AT YOU for having the MIGRAINE PAIN ITSELF, and THE ALL IMPORTANT "race for the cure", (maybe write their own book, discover the cure and become the next Dr. OPRAH OZ and become rich and famous - it's going on. There is a large city group of "Migraine Neurologists" who are trying to do that now. Just turn on the TV, you'll see. IT'S EVERYWHERE. That's why you are suffering and at war with these mean spirited, greedy as my dad puts it "dumb bell" people around the world for a nerve disorder for which "no suffering should ever be felt. No life should ever be condemned.
What if a tv medical ad would ask you for 10K to forever end your migraine pain? Would you do it? Of course you would.
Ever wonder why medical ads are even on mainstream media like TELEVISION? What ever happened to patient/doctor privacy, respect and compassion? It doesn't sell. Being branded the worse words in medical easy-understanding DOES. And it makes tons and tons of money, mostly YOURS! And worst of all keeps your life a living HELL. Humm, more corporations, specialists, medicate exclusive groups for them. MORE MONEY, MONEY, MONEY.
But they know we are on to them. They know we are done with hiding in shameful despair. Ever wonder why a Migraine Specialist suddenly disappears into thin air - they are not pro ducting REVENUE! Wake Up. They know they have to get off their 20 different types of MEDICATIONS a day plan routine and either get out and seek mental help themselves and let the true passionate professional Doctors heal you.
I know this sounds MEAN, BUT NOTHING MEANER THAN THE WORLD'S WORSE PAIN ITSELF- MIGRAINE.
Don't be afraid of your doctor. Be in control. Obey all laws, respect all who profess to help you, but be weary and never ever let them let you suffer. It's inhumane and not of the love of life.
Stay painless, the help exists.
God is a painless god, think of all you can do in your life. This inherited disease is like so many, not deadly but…yes the many which have an answer here and now.
What part of England are you based. I heard of a headache specialist from someone on the cluster headache group who told me this doctor had saved her life...(she was that desperate) I immediately asked my GP for a referral. This specialist Spent over an hour asking everything about my history. He is the only person that has understood and listened. I was diagnosed with Hemicrania Continua, told to come off all medication, had a CT scan and Monday just gone had GON. Time will tell but I know this doctor will keep trying, he is amazing and I feel better just knowing that someone is taking me seriously and not just using me as some sort of drug guinea pig. He is based in the North West... good luck x
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5 migraines in 4 days 
Botox so far
Any ideas to help manage my migraines?
Weening off amitriptyline
