Migranous Neuralgia?

[JUUJOO]

After many years of weird random symptoms, I realised together there was a pattern .My symptoms are on my right side : weird tingling, pins and needles burning sensation plus horrible stabbing pains, top back right head. Tenderness along right side of head. Ear pain. Pain below ear into neck. Pain in throat when I swallow, right side. Small little ulcers on roof of my mouth, swollen sore gums. Tenderness around my eye socket, making my eye feel weird. Runny nose.. These symptoms persist for around 3 days. I've also get a silent migraine with aura seperately, maybe once a year, which resolves normally within 10 minutes but these happen completely independent from other symptoms.

My GP referred me to a migraine specialist, I had a telephone appt and he confirmed it's a rare type of migraine effecting many areas along the Trigenominal nerve (sp?!) and called it Migranous Neuralgia. His advice was to drink Coke and take 3 aspirin as soon as I felt it coming on. I get these episodes at worse once a month and they vary in severity. This last episode, the stabbing pains were horrible, but I am still able to function day to day, so from that point of view strong medication isn't really necessary.

I'm just wondering if anyone else has this type of migraine and has any other solutions other than coke and aspirin?

[StriatedCaracara]

I get something a bit similar. I made the association myself that they were affecting the trigeminal nerve and looked it up. I get runny nose and tends to last three days.

I have underlying lupus-like autoimmune condition that has been diagnosed as undifferentiated connective tissue disorder (UCTD). My symptoms have improved on antimalerials and short courses of steroid.

(NB. Mouth ulcers are common with Lupus. I use mouth rinse products with Hyaluronic acid in like Gengigel. There is also a Gengigel spray and a Gengigel gel).

Tender scalp symptoms have twice resulted in a suspected Giant Cell Arteritis referral.

A separate Neurology referral resulted in a telephone appointment with a GP with special interest in Headaches who worked in their Headache Clinic. He diagnosed Migraine.

I also get one-sided migraines which are triggered by bright light hitting outer side of left eye. They happen mainly in the Autumn. I recently got some preventing glare prescription distance glasses and sunglasses to help prevent this.

The one sided migraines can make me feel faint and sick, as well as affect my left leg, - making it feel numb and a bit weak.

My gut feel is that sometimes things are not simple and it is logically possible also to get more than one sort of headache.

Aspirin i have found helpful generally. Antiphospholipid syndrome is something I think I am borderline for. Migraine is associated with it. Aspirin as well as being anti inflamatory, helps to prevent micro clots associated with the condition. (Never been checked for it though as blood tests difficult to get unless pregnant or had a blood clot.)

There are also times when I get the horrid stabbing pains., sometimes when I am swimming or being more active. I have worried about an aneryism but several requests for MRI failed. Even had MRI once of eyes and it could not be extended to where I get the pain. Stabbing pains are very localised, they have been on both left and right sides, at different times, above temple, I find are helped by breathing more deeply. I think increased oxygen helps. Maybe the caffeine in coke helps blood vessels dilate. The whole subject area I find confusing. I worry things are over simplified.

Basically been left to my own devices. Neurology did not investigate. Just had the phone call.

These symptoms I have only had since I had covid infection in 2020.

Pathways for diagnosis seem simplified and focussed on specific outcomes. Feel my situation might be more complex. My approach now might be an A&E visit so I could get investigations done. Thankfully I have learnt to reduce the severity of occurences. Stress did not help. Things sometimes improve with time. Hoping this does.

[JUUJOO in reply to StriatedCaracara]

Thankyou for sharing your experience. I too have an autoimmune, Graves disease and was suspected of Bechets years ago, but at that time I did not tick enough boxes for a diagnosis and lucky symptoms went away after a few years, so that was that. It's all quite scarey. I'm sorry you are not getting the help you need.

[Justajem]

I also get the symptoms you describe apart from ulcer. Tender scalp, left sided ear pain, eye socket pain, and temple pain, throat and neck pain, all left sided. I’ll try the aspirin and coke which I think the caffeine in helps the absorption of the aspirin. Triptans help but usually left with residual pain which can flair up again. Have had a little success with a forehead tens machine. Neurologist didn’t really listen so I haven’t had a diagnosis.

Interested to read any other replies you get!

[JUUJOO in reply to Justajem]

Thanks for sharing. I'm sorry you have the same symptoms yet haven't had a diagnosis yet. I had a 3 day episode last week, then I've felt my head becoming tender again, like it's coming back already. Really annoying and worrying!

[Joolstom]

I've suffered migraines since the age of 2 (I'm 53) and was diagnosed with hemiplegic migraines in 2001. When I read all of your symptoms if was quite eerie as I experience exactly the same symptoms ( in addition to the episodes of paralysis). Do you also experience really severe pain right through the centre of your right eye? x

[JUUJOO in reply to Joolstom]

Wow, age 2?! I've been having these episodes for maybe 6/7 years, since hitting perimenopause I think. Although I did suffer with terrible headaches as a child behind my eye. Yes I have had extreme shooting pain in my eye many times over the years, but never consistent, always isolated, never with the other symptoms. Always freaked me out. But I would get similar shooting pains all around my body, which I figured out were hormonal... Maybe! What do you do / take to ease the symptoms?

[Joolstom in reply to JUUJOO]

Over the years I've tried a raft of medications which either haven't worked or I have undergone a reaction to.Most lately I have tried Ajovy injections which I've heard amazing things about. A friend of mine hasn't experienced a migraine since she began taking them 2 years ago. Sadly I am allergic to them.

I'm currently in the process of trialling Atogepant. A new drug with minimum recorded side effects. I'm struggling with dosage as it is interacting with medications for my other conditions.

I bought a migraine tens machine, cold cap, everything for relief but zero effect.

I usually have to go to bed when I can't take it anymore. Usually for about 4 to 5 days, vomiting every 2 hours on the dot, day and night. Just having to let it run it's course x