4 month migraine

[Zigabella]

Hello. Never had a migraine or been a headachy person.

In January I had what I now know was an ocular migraine. The problem is that ever since I have daily headaches, blurred vision and trouble with dizziness not to mention extreme fatigue.

I finally saw a nieurologist this week who said it was still a migraine and was very dismissive of my symptoms and extremely patronising. These symptoms s are seriously impacting on my daily life.

All the usual pain killers have had no effect and I have been on amitryptaline since February (up to 50mg the last few weeks) .

Nothing is helping. I was just wondering g if anybody had been in the same situation?

Many thanks from me xx

[MaryF]

Yes I have, and I have Hughes Syndrome/APS, often people also have with this disease a thyroid problem and also Sjogrens Disease. Neurologists, apart from a few are well known regarding dismissing this disease and indeed at times somatiszng the disorder. Often people with this autoimmune disease will have other family members past or present with other autoimmune disorders, including thryroid and or perhaps early heart attacks or strokes and if female multiple miscarriages. Migraines such as these do not respond to standard pain killers only antiplatelets like Aspirin or anticoagulants. Basically the blood is a bit too thick. Come back to me if any of this rings a bell. MaryF

[Zigabella in reply to MaryF]

I haven't heard of this.

My mother has under active thyroid and I had a couple of miscarriages then was put on aspirin for both of my children to aid blood flow.

I also have strange sensations

in my feet and can only walk for 20-30mi s as I start stamping with the effort of picking up my feet! Neurologist unhelpfully said I had to push through this and the feelings of vertigo not helpful when I really am pushing myself to the limit!

[MaryF in reply to Zigabella]

Hi, here is the charity website ghic.world/ on this site, are the three blood tests you GP can do, (please do them at the hospital, as the samples taken are time sensitive). Also on this charity website, is a link to the patient forum which contains a list of specialists who understand this condition, also some on the charity website. You do sound as if you should be tested sooner rather than later. MaryF

[wooly1977]

I also had similar situation with symptoms

And my issue has been a spinal csf leak

Does you head improve at all when your flat

I had to really fight and educate myself to get this to be listened too

I can also recommend a good neurologist if that helps

[Zigabella in reply to wooly1977]

I get headaches when lying down too. Don't feel dizzy then though. Eyes are always blurry.

[wooly1977 in reply to Zigabella]

You should really monitor that side of it,to see if there is a postural eliment too it.look up csf leaks and see if your symptoms match youtube.com/watch?v=cspOWNC...(Not working as expected?)

Are you bendy or flexible

Did you have any kid of trauma or ongoing back issues?

[Zigabella in reply to wooly1977]

I will look it up thanks x

[Zigabella]

Thanks. I have looked this up. I agree some symptoms sound familiar. I had a CT scan which was clear so I am guessing that rules this out.

I know there's Something wrong though because the sudden decline in my health is ridiculous. The neurologist basically told me I was lazy and needed to exercise more. She really wasn't listening! I was actually really excited to get the spot to maybe get some answers...

[wooly1977 in reply to Zigabella]

Not necessarily

I was CT’d and it doesn’t always show in MRI

Be guided by the postural side of symptoms

Within a few minutes of lying down symptoms will improve

Not necessarily disappear

Good luck anyway

[Zigabella in reply to wooly1977]

Did it show in your ct?

[wooly1977 in reply to wooly1977]

No it didn’t

[Pinkcat21]

Dear zigabella

I never had a migraine until 51 and I suffer these occular migraines, they seem to happen in clusters and I can have a mild headache for days after. I am light sensitive and suffer dry eyes which I now take drops for and that seems to help with the sensitivity and blurring.

[Zigabella in reply to Pinkcat21]

That's funny! I have just turned 51! Just can't understand why I still have it 4 months on! Thanks for replying.

[Zigabella]

That's interesting!

[michelnow]

Hi Zigabella, You definitely need a new neurologist or headache specialist. I would not take into account advice given by a Dr. who was being dismissive of your symptoms.

I started getting daily headaches, with migraines 2-3 times per week a year and 3 months ago at age 53. I had not had any migraines or many headaches at all before.

The treatment that is working for me (we are all different, but it's good to know different solutions that could be effective), is the beta-blocker Propranolol. I do not have high blood pressure (what this drug is typically used for) but it was found that it is an excellent preventative of migraines/headaches. It worked for me after 1 day of taking it.

I am still looking for answers because there are side effects of this medication for me, including tiredness and a bit of a depressed mood, but the relief of the headaches is worth it for me, as I do not get a single headache while taking it after having a daily headache for over a year.

I wish you the best and that you find the answer to your headaches.

[Zigabella in reply to michelnow]

Thank you. I think that is the next thing on the list to try. I really don't like taking tablets without knowing the cause. I guess sudden onset of migraine doesn't always have a cause!

[michelnow]

I am not a fan of taking medication either, and waited a year before I tried this. At this point, I feel it is a much better option than the triptan medication I take to alleviate my migraines. I am still on the search for the cause of the migraines though! And also still searching for a more natural solution.

[Advice1 in reply to michelnow]

Hi michelnow that is good advice

even a low dose of Propranol even at 10mg or 20mg cut my migraines

down by 50% in one year but i had to stop taking it due to it slightly aggrevating my Mild Asthma so am looking for something else to help.

Glad you have found something that works.

[Zigabella in reply to michelnow]

I have just started with antenalol.

[Zigabella]

Hi. I had 2 days without a headache - yippee! Over those days I had a number of feelings of pins and needles all over my head. I was wondering if anybody had experienced this. At first I thought it was happening as it was the end of the migraine but the headaches are back today and the vertigo and blurry vision never went!!

Thanks

[HJMac]

Have you tried getting an appointment at the Migraine Centre? I found they are helpful. It is a charity so they ask for a donation, but at least seeing a doctor there might give you some help and ideas.

This does sound awful for you. I went through something that lasted quite a while but eventually went away and hormones were making it worse, might be worth getting a hormone test if you think it could be menopause ?

Could also be a stuck migraine. Check those out, a bit depressing but they do exist.

[Zigabella in reply to HJMac]

Thanks for replying.

Is that the migraine centre in London?

My doctors won't check for menopause. They says results are not reliable. I may try to push for it though.

[Zigabella in reply to HJMac]

Finally got a test for menopause - not even peri menopausal! Can't blame that then!

[HJMac in reply to Zigabella]

Hi sorry I don't think I replied to the earlier comment. Yes the migraine centre in London.

At least you know hormones are normal. You've ruled it out..