I have been doing some research since my regular doctor is clueless about me and has admitted it. i am complicated and she just isnt equipped to handle me. i recently posted about an ice pick pain behind my left eye that realllly sucks. i also have tearing of that eye almost continuously. and it feels like my eyes will explode any minute. well i did some research and am pretty sure i have cluster headaches on top of the migraines and chiari pain. my neurologist mentioned i may have cluster headaches but i was under a totally false impression of what they were. does anyone else has this particular 'complication' ?
Can't wait for someone to answer so I can find out too. Thanks for asking.
I understand the pain you are talking about .I do have pain in the eye it better now with lots of pray. Praying for you
I’m waiting along with you both. I have the same pain in both eye but the pain is sharper on the left eye.
Severe pain that shot up from back of neck to behind right eye was my earliest symptom a couple of years ago. I actually thought I had pulled something in my neck while exercising. When I was finally diagnosed in Sept 2014, I was found to have an enlarged pupil in my right eye, along with double vision when looking to the left. The stabbing eye pain has gone away, thankfully!
I get random eye pain also. And have migraines of all types on top of chiari daily headaches. Such fun, huh? ;-)
Do you take any medicine for your headaches? Have you had imaging done? (MRI, CT scan) It sucks not having any answers. I was going to ask if any one has weird teeth/dental/jaw pain? I had an episode last year where my teeth hurt real bad, my jaw was tight and skin sensitive to the touch. I saw my dentist 4 times in 2 months, saw a TMJ expert, and my regular physician. I don't remember what actually treated this or helped, it took at least 2 months to get better, and was told i might have some sort of weird nerve problem. So since Monday I have been having the same pain again, this time my lower left teeth and face hurt so bad, and ibuprofen won't help. I saw the dentist tonight, and I don't have cavities or decay, he said , hmmm, I'm sorry, I'm stumped here. Gave me some mouth wash to try. Awful pain, no answers as to why. Anyone else get this?? I'm sorry you're experiencing this, and hope you can find something to ease your pain.
OH yeah, see an optometrist/ophthalmologist to get your eyes checked, they might find something. Good Luck
Good Morning ,
Yes the most complaint i had before my surgery was ice pick headaches . And falling all the time since my surgery i get them every so often now.
Hi does it feel like stabbing pain in your eye? I realised that when I'm stressed or doing too much, I get a similar pain in my one of my eyes or both at times. My doctor or neurologist doesn't understand but they realised that I get stabbing pain in my eye and the pressure from my head down my eyes are stress related or when I haven't sleep much due to Chiari and migraines. That's when I have to rest up. I hope this helps.
Please, consider visiting ophthalmologist. I had problems with my left eye for over a year. I was diagnosed with Iritis eventually and my ophthalmologist refuses to see any link to Chiari. He says it is autoimmune. My eye does get very sore before migraines but actual Iritis attacks I get may be only once every couple month. My iritis is atypical. No redness, just extreme pain, then foggy and double vision follows etc. If not treated Iritis can lead to blindness. So, this is something you might want to rule out. My optic nerve was never swelled . Neurosurgeon and Neurologist told headaches could do it but ophthalmologist checked pressure in the eye and lower pressure was a sign of iritis...I was confused for months and then I sorted it out for myself. I think Chiari might trigger Iritis (uvetis) somehow . I have steroid drops at hand for outbreaks now. In between pain I accept just as soreness because of all the strain that was already put on my eye. First time when I went without diagnosis for couple weeks my vision dropped 50%, then I went to emergency (where I was finally diagnosed and by the way treated for migraine) and it has been 2 months after that before my vision restored (I do have cataract now). I still think there is more to it then autoimmune iritis but I simply can't prove it.
Your case could be entirely different but do check with ophthalmologist just in case. Like I said all I had was extreme pain in the eye not even redness (1st symptom of iritis) but diagnosis still was iritis. If your pain come it goes than it may be simply from headaches but if it is there for over 2 days and gets worse than something like iritis can be the case. Dr. will also check your optic nerve for swelling.
Best,
Very informative, very helpful, thank you Ada!
Thank you all for your help and well wishes, :) I am sorry alot of you have been thru the same thing. I just got new glasses and had the eye test and that was fine. But i did research the hell out of something my neurologist said as he walked out the door of my last visit..... cluster headaches. I have heard the term before but never looked into it... and was surprised at what i found out. i thought i was going crazy from the combination of migraines, chiari and lack of sleep and that it was all in my head that the ice pick pain would actually start at the same time every night and wake me up,then last a few hours and then it will stop and leave me with my normal 24/7 headache which is only a 3-6 on a scale of 1-10. And then start again at 1 p.m. last a couple hours and cycle back thru.... this happens 2-6 times a day. The ice pick pain is a 20 on a scale to 10, and makes having a baby look like a walk in the park. my eyes feel like they are going to explode and my eye waters and puffs up.They are also known as alarm clock headaches or suicide headaches. They are usually episodic and will happen regularly for several weeks then go away for weeks , months or even years. Unfortunately since i have been having this with increasing severity for 3 yrs im thinking its chronic. But I will be mentioning this to my neurologist, NS and the pain management doctor they finally decided to send me to this month after 3 years of me saying i cant take the pain anymore. Pure oxygen is supposed to help if you catch the heachache early on. Have been doing this and it has helped with severity and how long they last about 15-20%. And at this point i will gladly take any help i can get....
I hve had cervical MRI and a flow study done in the last week. Flow study was fine am waiting for cervical mri results. I have tmj as well.
Kallee said:
I get random eye pain also. And have migraines of all types on top of chiari daily headaches. Such fun, huh? ;-)
Do you take any medicine for your headaches? Have you had imaging done? (MRI, CT scan) It sucks not having any answers. I was going to ask if any one has weird teeth/dental/jaw pain? I had an episode last year where my teeth hurt real bad, my jaw was tight and skin sensitive to the touch. I saw my dentist 4 times in 2 months, saw a TMJ expert, and my regular physician. I don't remember what actually treated this or helped, it took at least 2 months to get better, and was told i might have some sort of weird nerve problem. So since Monday I have been having the same pain again, this time my lower left teeth and face hurt so bad, and ibuprofen won't help. I saw the dentist tonight, and I don't have cavities or decay, he said , hmmm, I'm sorry, I'm stumped here. Gave me some mouth wash to try. Awful pain, no answers as to why. Anyone else get this?? I'm sorry you're experiencing this, and hope you can find something to ease your pain.
OH yeah, see an optometrist/ophthalmologist to get your eyes checked, they might find something. Good Luck
Your headaches sound so much like mine. One who never had them will never understand. My husband said to me once I fake it all and I don't have migraines because I don't sit in dark cool room under blanket like his grandma did...Really:). I mean, can I sit under blanket the rest of my life? With kids, pets, work...what dark room? I am in pain and that's my life.When I was admitted to hospital through emergency they did sent me off home with papers about cluster headaches. And after IV with 6 medications for migraine headaches my very bad at the time eye acquired normal shape pupil (it was oval at that time). When my run-around with eye started my headaches went from twice a week to daily event. One of my theories, I do have cluster headaches and one day my eye just been bothered enough to have huge autoimmune response and have this awful Iritis inflammation. Like you say, pain in the eye feels like eye is going to explode and it is too hard for me not to connect it to headaches. And my marker for Okay/Not okay is if pain goes away next day...at least for few hours it is Okay, if it doesn't, it went to far and I need steroid drops. Please, keep on the back of your mind possibility of iritis and if eye doesn't stop hurting for couple days, pupils change shape or size, please, see ophthalmologist and make sure they check pressure in the eye (definite way to know for sure). And you have to go to ophthalmologist not optometrist. I started with optometrist, was falsely diagnosed with virus infection, lost time, ended up in hospital, all this could lead to serious permanent eye damage.
I hope one day they will have new definition and understanding for Chiari headache that will be combination of world's worse migraine (basilar including), cluster headache and then some and also they will know why we have it and hence there will be appropriate medication to treat/prevent this headache. So far, they (my drs including) only mention headache brought by cough, strain etc (as symptom of Chiari). I don't cough that often....yet I have headache that doesn't go away for days. I mean how coincidental we all have Chiari and most of us talk about endless migraines, cluster headaches, get diagnosed with basilar migraines. Sure, it is simply coincidence. And the more I research infor about migraines and cluster headaches, headaches I have simply don't fit the bill. Last hours? How about days...and so on. Same about eye pain, I found pages and pages online of people with Chiari complaining about eye issues, some Drs will say there is no connection.
My management and treatment plan right now:
-emergency drops for eye (when I am absolutely sure or iritis confirmed by Dr)
-Topiramate daily 50 mg in the morning and at night (that reminds me I missed my daily doze:).
-Sumatriptan for huge headaches when I suspect it is migraine
-some herbal migraine aids
-doing breathing exercises at left turn waiting for green light (takes forever in our town) when I feel migraine is barely picking up...sometimes helps
-reasonable exercise, I do not run, jump, refuse to lift kids or heavy objects even though I am athletic and can do that, I simply refuse...because that I will have official Chiari headache caused by straining on top of all others.
-staying clear of my husband when he is in a negative mood (yelling, screaming and even singing is a major no-no).
-sleeping at least 7 hours
Hope any of this infor is useful.
Best,
Allura said:
Thank you all for your help and well wishes, :) I am sorry alot of you have been thru the same thing. I just got new glasses and had the eye test and that was fine. But i did research the hell out of something my neurologist said as he walked out the door of my last visit..... cluster headaches. I have heard the term before but never looked into it... and was surprised at what i found out. i thought i was going crazy from the combination of migraines, chiari and lack of sleep and that it was all in my head that the ice pick pain would actually start at the same time every night and wake me up,then last a few hours and then it will stop and leave me with my normal 24/7 headache which is only a 3-6 on a scale of 1-10. And then start again at 1 p.m. last a couple hours and cycle back thru.... this happens 2-6 times a day. The ice pick pain is a 20 on a scale to 10, and makes having a baby look like a walk in the park. my eyes feel like they are going to explode and my eye waters and puffs up.They are also known as alarm clock headaches or suicide headaches. They are usually episodic and will happen regularly for several weeks then go away for weeks , months or even years. Unfortunately since i have been having this with increasing severity for 3 yrs im thinking its chronic. But I will be mentioning this to my neurologist, NS and the pain management doctor they finally decided to send me to this month after 3 years of me saying i cant take the pain anymore. Pure oxygen is supposed to help if you catch the heachache early on. Have been doing this and it has helped with severity and how long they last about 15-20%. And at this point i will gladly take any help i can get....