- Last edited by Christin
- Last edited by APsnotFab
Hi tomcat yes I get sharp pain randomly from top of head down usually get left temple pain as well. Notice if inr low I get it. Have had clots on the brain so whether related to that as sinuses in brain are damage from previous clots. Kath
i get these too! It's usually in the left temple as well. They're SUPER painful for about 2 seconds, and then just disappear. I hope I'm not dying or anything. Lol
Plus random shooting pain left ear most odd
Thanks, mine seem to come really randomly and in no particular place, I do sometimes get the visual "floaters" to so I'm presuming it's micro clots.
Yes i get sharp pains randomly in my head every now and then and have a ticking sound in my ears randomly too
Hi im 16 and i have been having this for about 4 years did you find out what it was?
Yes...me too! Particularly the left temple same as Kath. I'm currently having some tests because I am getting dizziness as well....bit worried as stroke (sinus thrombosis) was 2 and half years ago, but there's obviously something going on in there even now. Sometimes hear my blood making a whoosing noise in my ear ...anyone else? Larraine xx
Hi larraine I had multiple sinus thrombosis when dx and also get whoosing noise in my ears ESP from sitting to standing or even rolling over had it recently during leg wax from turning onto my front and my inr was below my range had temple pain. My dx was 1990 had clots during pregnancy and after when they stopped my warfarin. Recently had Tia's so on aspirin plus range 3.5-4.0 but I still feel great when above 4!!
Had MRI of brain my sinuses are damaged from prev clots and I had micro clots visual issues but luckily tia's no permanent stroke but tharpt is my worse nightmare so try to keep as fit as poss loss weight and never smoked! Working on the stress will be redeployed as my current job I'm currently on long term sick was a contributory factor to Tia's. Kath xxx
Hi Mazsha, for your safety in a public forum, please send email addresses by private message, Mary F x
Yes, I get these as well.
Yes, I get these random pains. I have always associated them with my Vasculitis/Lupus. Maybe I should now think that it is the Hughes that is responsible.
Many thanks for posting this question as it seems that quite a few of us suffer from this complaint.
Hi Tomcat, I get the shooting pains mostly at my temples and sometimes behind or between my eyes, it is sometimes accompanied by seeing spots or lights. There really seems to be no end to what this disease causes. So many strange random problems from head to toe.
Yes I get these too.
I get them in my head and also my eyes. Actually I pretty much get them anywhere from my toes upwards.
I can feel a poll coming on
Glad it's not just me then.
I have them as well. Always in the same spot in my head. Stabbing sharp and usually very fast pains. They come in spurts and I can have them for a day and then gone for months.
Seems like another common type thread we all share.
Well described exactly how mine are!! Kx
Yes, always the same spot dead centre of head going straight down like a stiletto. Wow - big zaps of pain, then gone and maybe gone for months. But impossible to momentarily carry on a conversation. Always did wonder about them.
I have these, its enough to double me over and whince and yelp - only momentarily but bloodyhell they hurt! I get them top/side of head and sometimes in temple x
More or less stopped when started on warfarin but sometimes get the odd shooting pain in head. Definitely get whooshing and tinnitus in ears and hearing affected, did have bilateral hearing aids at one time but warfarin has definitely helped all sorts of things. Used to get lots of head pains before stroke 6 years ago. xx
Seem to come in spurts and then none for months. Going through a patch right now. Right down through the top centre of my head. They do seem to be in conjunction with generalized headaches.
get all of it, found scattered micro spots in front temperol area of brain. Pain reduced since on warfarin but as not stable neither is the rest, take care
Yes, Tomcat (and co!),
I've also had this on and off for as long as I remember - even as far back as childhood. Also in my ears, eyes and in other various parts of my body. such as stomach, chest, ribs and back - all randomly.
I have no idea of what causes it - no obvious rhyme nor reason that I can pinpoint, but it's usually enough to stop me in my tracks and make me gasp/cry out - then it's gone and I feel very foolish....... :-\
Since starting Warfarin 10 months ago it seems much better - I can only recall one or two occasions when it's occured.
Bunch of freaks, aren't we?
Nothing worse than suddenly whimpering when your around people you don't know, you get the funniest looks.
And yeah, definatley freaks,lol.
I don't know if this is the same kind of pain, but ever since I was a teenager I randomly get a sharp pain, kind of like an electric shock, above my left ear. I was thinking maybe it was a pinched nerve. I become almost debilitated until it goes away. It can be very dangerous if driving. It happens once every three months or so and lasts for about 5 to 10 seconds. Does anyone else out there get this kind of a pain?
Hi Christin, I know this post is a year old, but have you ever found out the name of the head pains?? I haven't had one in about a year, but it could happen again without any notice. I usually have to hold my hand against the painful spot and apply pressure until the pain goes away (usually 10-15 seconds). What the heck is this??
Hi! I have recently seen Dr. Savundra in London about this. I will look up his report tomorrow and let you know exactly what he said..I feel very relieved as it doesn't seem to be serious. He is another one of London's fantastic doctors.
Hi....here is how Dr. Savundra described my pain"....intrusive symptom of intermittent excruciating discomfort superior to the left temporomandibular joint in the region of the posterior insertion of the superior and anterior auricular muscles and the distribution of a twig of the left auriculo-temporal nerve, itself a branch of the mandibular nerve. The sensory symptoms do not involve other areas innervated by the trigeminal nerves. She has found that pushing a finger into the area is helpful, so the issue is not tenderness. The sharp pain starts spontaneously and it lasts around 15-30 seconds."
He goes on to say..." The very focal nature of the sharp pain and the long history definitely exclude any serious underlying pathology and also any pathology involving the brain and the proximal portion of the trigeminal nerve and its divisions. The hearing dip is contralateral to the sensory symptoms which is further reassuring. Possibly there is an association with her previous dental problems, or the symptom may be a manifestation of migraine aura. It would be helpful to have imaging of the relevant areas and a 3-Tesla scanner would perhaps avoid the need for gadolinium. "
I had a scan of my brain MRI with me, that I had taken several years back, and that was helpful. We discussed that the pain may be related to the lack of circulation in the nerve area described, due to the Hughes Syndrome. I highly recommend seeing Dr. Savundra, if you are in the London area. I hope this helps...good luck!
Been getting those for past few monthhs
Yes, I too get these often. It is normally is on the left side of my head along with a pain down to ear and jaw. My ears "crackled" on a daily basis and sometimes have pain in left ear accompanied with sharp pain on last side. I dont ever remember NOT having this, even as a child. I did have myself checked years ago by an ENT that found a deformity in my ear. He described it as a pocket that held fluid and it seemed to release from time to time. He wanted me to have surgery but i didn't ever go for a follow up visit. At that particular time in my life, I wasn't having any "known" flares and didn't associate with APS. I'm still not sure that isn't particularly associated with APS. I'm in the process of going to hemo, neuro, and etc. next week. If I find out anything, I'll be sure to post findings. PS- I am so thankful for this site!! Denial hasn't be fun:)
Autoimmune Inner Ear Disease (AIED)
When antibodies attack the inner ear it is called autoimmune inner ear disease. This can cause dizziness, vertigo, tinnitus (ringing in the ears), and progressive hearing loss.
I have been having these types of headaches as well as all of the symptoms that you listed for AIED. I had no idea it could be related!
Reading these comments really makes me feel not so alone in all this!!! thanks, it helps... I was starting to think i was imagining some of these hard to explain symptoms.
I get sharp stabbing pain in my skull that is excruciating and last about 1 minute. I have no other symptoms. Sometimes I am worried I am having a seizure.
This is known as idiopathic stabbing headache and can be part of migraine!
This might be idiopathic stabbing headache or primary stabbing headache. I got that from APsnotFab. From what I just learned on another website, there are medications you can take that appear to be helpful. Also you can try taking a melatonin supplement.
Did you ever figure out what it is Tomcat?? I get the same thing!
Sadly no, the specialist I used to see moved to a hospital at the other end of the country, her replacement was nither use nor ornament, he was asian and hardly spoke any english. On my first and only visit I had with him he tried to reverse all my current treatments and contradicted everything the previous doctors had recommended. I stopped going after that as there just wasn't a decent specialist to go to, now I just self medicate and so far I've been fine. Thankfully I'm not quite ill enough to need Warfarin so I'm still on the aspirin.
I have started to notice that my concentration has gone completely out the window though, sometimes I can read something 3 or 4 times and it still doesnt go in.I've recently started a new job that was very technical and I found it extremely difficult to pick up, this was something that in the past I would have had no problem with at all.
Have been getting a sharp pain on right side of my head since yesterday, like you it only lasts a few seconds, I do get migraine though, reckon it could be related?
From what I understand, the pain is called an Ice Pick Headache. I get them multiple times a day, but the days I have them are few and far between. For me its on the right side of my head, either right on top or right behind me ear. They are more common in people that suffer migraines. They suck, they make me flinch because they're so unexpected and painful.
Do you have APS? We don't encourage people to message as the whole point of the Forum is for everyone to learn from the posts.