Can anybody help me?! Doc says Migraine..???

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I am new to this so please bare with me and i apologise for the long post.

Im at 26 year old female.

Began to feel unwell end of February (approx. 27th)


Saw GP on 5th March. Symptoms:

·      Pressure behind eye

·      Shooting pains in head

·      Tiredness

·      Blocked ears


Outcome: Pressure behind eyes check and antibiotics given, possibly sinusitis.


(unsure of date) Attended A&E for ‘Blind spot and visual disturbances.


25th March, Still no improvement – saw GP. Symptoms:

·      Shooting pains in head

·      Blocked ears

·      Pain in eye

·      Tiredness

·      Dizziness (feels as if ground is moving)

·      Tingling in lips

·      Nausea.


Outcome: commenced taking Propanalol 12mg


(Unsure of date) Attended A&E during the night for numbness in left side of face.  (unsure of date)


15th April CT Scan


GP appointment following CT scan: All symptoms still present.

·      Blocked ears (most in the evenings)

·      Pressure in temples, side of face and jaw.

·      Nausea

·      Tingling lips

·      Dizziness

·      Fuzzy/ drunk feeling

·      Cold top of head

·      Numbness in left side of face

·      Feeling worse in the evenings and lying down


End of April – Nexplanon contraceptive implant removed. Most symptoms disappear except numbness in left side of face.


7th May, Appointment with Dr Gibson – Stopped taking Propanalol slowly.


2 ½ weeks later all symptoms return.

·      Numbness in face going down neck at times

·      Extreme tiredness

·      Shooting pains in head

·      Nausea

·      Fuzzy/drunk feeling

·      Headaches all the time


(Unsure of date) A&E attendance – Severe pain in right shoulder travelling down arm.


5th June GP Appointment- recommenced Propanalol.


8th June Symptoms noticeably reduce.


15th June: All symptoms return:

·      Numbness in left side of face, travelling down neck at times.

·      Headaches


17th June: Extremely bad day!!

·      Numbness in left side of face travelling down neck at times

·      Constant headache

·      Shooting  ‘electric shock’ in head

·      Severe pain in head that lasts max 30secs (comes and goes)

·      Feeling very unwell

·      Immense pressure in head

·      Very hot and sweaty at times

·      Neck pain

·      Nausea and a full feeling

·      Shoulder pain (fluctuating)

·      Hot poker feeling  left thigh through back of leg

·      Fuzzy (drunk feeling

·      Twitching in head or eyes (occasionally)


18th June Called GP – WORST EVER FELT!! Continually fluctuating day to day severity.


25th June - Called Orthodontist to enquire if fixed brace may cause migraine. Dentist assured me this was not possible.


I have monitored what I eat, daily activities etc and can not recognize a trigger.

Been commenced on Topiramate 50mg for the past 4 weeks with unfortunately no effect ( except awful side effects) due to see Neurologist again next week. 

Has any one experienced anything similar??

Thnakyou in advance

Robyn x

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51 Replies

  • Posted

    Hello Robyn. Now first of all don't apologise. We were all new to these posts once and I think most of us get a great deal of support from these forums.

    As I read your post a number of things came to mind. I wondered if it could be an inner ear problem but I have suffered a lot of similar symptoms. I do think you are having migraine attacks but I don't know what is causing the pain in your leg. That could be something totally unrelated. I'm sure someone will respond with other ideas.

    Fortunately you are seeing a neurologist so hopefully he'll come up with a diagnosis

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  • Posted

    Hello Matron,

    Thankyou very much for your reply.

    My ears have been checked and ruled out. 

    Hopefully this will be sorted soon and quickly. 

    Thanks again

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  • Posted

    Hi Robyn,

    Well firstly, we are all in the same boat on here, so we understand you entirely and of course no appolgy is needed as I or we are only too happy to listen and try and be of some help to you.

    Topiramate was a drug that was useless for me too and as you also reported the side effects are aweful.

    The symptoms you describe could mean you are like myself, statistcally only 10 people in the country suffer from. That is a combination of Cluster headache and Hemaplegic migraine.  These conditions do not follow exact symptoms, but left sided numbness is typical of hemaplegic migraine, eye pressure/pain is also typical of this, plus cluster headache too.

    My headache specialist at National neuroligal hosp in London is adamant that Flunarizine is best treatment for hemaplegic migraine, which controls my condition. Sumatriptan epipen deals effectively with any pain, with a combination of verapamil and pregabalin.

    This works for me, I am not saying it will work for you, but like you, I struggled for nearly a year until this was discovered.

    An MRI scan is better than CT for this so push for one if you didnt get one already.

    Good luck Robyn and keep us posted please

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    • Posted

      Hi Personal20, I just wanted to say a big thankyou, I went back to my neurologist today and he has commened me on Flunarizine. Can I ask what dose you are on? And also if it effects your lifestyle? Thankyou again
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    • Posted

      Hi Robyn,

      You are welcome I hope that it works as well for you as it does for me.

      So, he started me on 5mg at night to see how I reacted to it, I had no specific issues so he increased it to 10mg, the maximim dose.

      You know sometimes with these meds you have to balance the potential benifit with the side effects, so as far as my lifestyle is concerned, yes, prior to me getting hemeplegic migrane my lifestyle was a lot better, but since taking Flunarizine, its way better than being in hospital every 2 or 3 months, even though it can make me a bit sleepy.

      Do keep in touch Robyn its the first time on here I found anybody else taking Flunarizine so be keen to hear how you get on with it.

      Good luck and hope your symptoms improve, so you have a better quality of life soon.

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    • Posted

      Oh btw just wanted to give you some more info about Flunarizine, it is well used at great ormond street hospital for sick kids and if you type into your search engine great ormond street hosptal and flunarizine, lots of info comes up
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    • Posted

      How long have you been taking it? Are you able to drink alcohol? I feel very positive about this as my neurologist appeared very keen about it. I am on 5mg to increase to 10mg after a month if I don't feel any affects.

      How long until you noticed a difference? I start tomorrow so I will definitely keep you updated smile

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    • Posted

      How long have you been taking it? Are you able to drink alcohol? I feel very positive about this as my neurologist appeared very keen about it. I am on 5mg to increase to 10mg after a month if I don't feel any affects.

      How long until you noticed a difference? I start tomorrow so I will definitely keep you updated  [smile]

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    • Posted

      I have been on it since last November and if I get any symptoms now I can cope, which is a lot more than I could a year ago!

      I dont drink anymore because of these drugs, dont miss it to be perfectly honest with you.

      5mg wasnt strong enough for me, but they have to start you off on 5mg.

      Yes Robyn, be positive, it helps!  Its THE BEST DRUG FOR HEMEPLEGIC MIGRAINE, as I keep trying to tell everybody on here,  plus for any ascoiated pain, get Sumatriptan epipen injections, which are WAY better than the tablets!

      Good Luck Robyn I am really happy for you that you have a desent Neurologist who understands and can prescribe you the BEST drug for this aweful condition!

      Take care

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    • Posted

      well I stopped drinkling alcohol because of another drug I was taking for cluster headache, I basiaclly didint want to feel anymore sleep than I was lol, so just stopped! But check the leaflet see what it says about alcohol. To be honest I dont miss it.  Robyn I really want to hear how you get on with Flunarizine, I am sure it will help you. Please keep in touch. Good luck
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    • Posted

      Oh I've had a horrible ache feeling in my lower back and right leg but reading the side effects muscle aches are listed.

      Oh yes an hour after taking it im asleep and takes me a bit longer in the morning to wake up

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    • Posted

      The main thing is Robyn, are they helping your hemaplegic migraines?  Obviously you are still on 5mg a night yet, so you are not up to full strength.  Hopefully soon the back and leg pain will subside.  I guess if it becomes too annoying you could see your dr to find out if some painkillers would be ok to use while your body gets used to the flunarizine.  I am sure this side effect will die down soon as will the sleepiness too.  Good luck and keep me updated if you woudnt mind please, get in touch any time
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    • Posted

      I think they are helping slowly but surely. I can cope with the pain just wandering how long it will last for. You are the only other person i have come accross thats taking Flunarizine. 

      Thankyou very much and I will keep you updated. 


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    • Posted

      Well you are the only other person also that I know who is taking Flunarazine, so its good to keep in touch to compare notes on how we are doing,

      I think over the next week the pains should subside.  I cant remember the sleepiness lasting longer than a few weeks and once I went onto the 10mg dose it wasnt so bad and I soon felt normal again.

      The main thing for me Flunarizine is keeping me out of hospital, so thats got to be good!  I am sure it will do the same for you too Robyn.

      Talk soon and hope pains subside very soon.

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