Trigeminal neuragia

[mully]

Is Trigeminal neuralgia associated with hughes syndrome just had a dreadful few weeks with it They at first thought it could be a TIA so I went onto high dose aspirin which relieved the pain within 48 hrs I am not on any other medication Thanks in advance for any replies ( I have asked for a referral back to Proff D'Cruz which hopefully they will do)

[RebeccaP]

Hi ...I am in hospital at the moment. Have Antipholipid and they thought i was having a TIA but after tests etc.it appears its Trigeminal Nurelga....never heard of it before but it was scarey. They have increased my Amitriptyline to a much higher dose in the hope that it will curtail it. I hope u get well soon

[mully in reply to RebeccaP]

Thanks for replying So sorry to hear you are in the hospital I would be so grateful if you could let me know how it started and progressed if you wouldn't mind I started with a temperature and what I thought was a virus ( I came to the conclusion that it must be Trigeminal Neuralgia after suffering endless shocks in the face and hoped that if it was viral it would just go away After 2 weeks it progressed so much that the pain was permanent and agony and wouldn't stop I was rushed into A&E with a potential TIA the CT scan was normal but I am still waiting on the results of the MRI but was started on anticoagulants (high dose aspirin) just in case it was TIA after the second dose of aspirin the pain has subsided and I am much better still difficult to chew or clean my teeth but definitely getting better I really hope you get some relief I really do It is the worst pain I have ever felt wishing you a speedy recovery Jane

[RebeccaP in reply to mully]

More or less the same as you OI thought sbout 10 days before I was having an APS flare up but after about 5 days the tingling in my arms and face got a lot worse. I then got awful numbness in my face like someone had put an ice pack on it...this was followed by very bad dizziness similar to verigo... both the side of my eye and mouth dropped slightly. I then knew something was wrong was taken to hospital by ambulance CT scans...MRI Scans...loads of bloods for Lupas and other autoimmune diseases which have not come back. But my warfrin level dropped to 1.7 from 2.5 for no reason. It was also discovered.which I was unaware of was I had hardening of the Arteries and my bad colestoral levels were at 8. However my Rheumatologist who is excellent, put it down to a Trigemanal Migraine which in my case presented as the same symptoms as a TIA. I just got home this evening...meds adjusted and my dosage of Amatriptline has been doubled to help with the bad tingling. But i am sure everyones symptoms can present differently. Like everyone else with APS we have to be very aware and familiar with our symptoms. I am so glad to be part of this group because I learn a lot from it and it helps with understanding the whole picture that is Antipholipid Syndrome and great to see there are others to reach out to...I dont feel so isolated.

[GinaD in reply to RebeccaP]

Glad you're home. Hope this medial adventure is over!

[MaryF Administrator]

A lot of people with autoimmune disease end up with low levels of B12, I have had this, plus all my children, in fact Pernicious Anaemia, it is worth having very detailed studies done, which look at your levels including your Folate, which if low can indicate B12 being too low. Something that is easily missed: omicsonline.org/open-access.... Not saying it definitely is this, but really worth looking into, as it may add to your problems. MaryF

[aspydoodle in reply to MaryF]

Some of the anti epileptics can affect absorption. Mine plummeted after I started pregabalin.