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Title: Anybody Else had swollen face and jaw pain? Post by artscotland on Dec 30th, 2007, 12:22pm I have been suffering for 5 months now with the headaches which i do not need to tell anybody on here is very hard to live with, they started with just an amazing pain and now the pain moves up and down the levels but lucky me dosent drop below a 7 out of ten (sorry big vent) anyway I realy need help a few days ago my mouth on my left side swelled up which is my headache side and i would say pain level only just below the first headache attack. My doctor is talking about dential but I thought I would check if anybody else has had any experience before they start messing with my teeth. Sorry for any bad spelling but with these headaches you can get away with any excuess! |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by BarbaraD on Dec 30th, 2007, 12:37pm Art, What meds are you on? HAve you tried O2? Are you on any prevents. Give us something to work with. A lot of people here have had unnecessary dental work done only to find no relief. We're here to help, but need to know some history on you before we offer any advice. Hugs BD |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by chewy on Dec 30th, 2007, 1:05pm Sounds like an abcess. |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by artscotland on Dec 30th, 2007, 2:55pm I have had a lot of other problems that are trying to be worked out like my white blood count is going from 16 to 26 with no explination My left eye is dlilated and watters a lot the headaches are sitting in my left temple and have been for over 5 months of hell now they do get worse at times and seem to at nite. With my face it is a swelling but is like a jaw pain which i had before but not this extream, its like the jaw wants to rest but it cant, with all of this i feel i just want to smash my head agaisnt a wall as mad as it sounds, i am normally a logical man but i can tell you this is starting to drive me to the edge, boy you realy need to dig deep with the pain with this one. I was taken in hosipial at the start with the headaches and what amazed me was that morphine didnt even help! I was told by the nuro that it is cronic cluster headaches and he has requested a mri scan he is trying me on 100 mg of topamax but has said he is not hopeful but needs to start on a course and try differnt treartment. The consultant did mentiontion oxygen but then did not realy seem to go any further with it. We have a real shortage of nero specialicst in Scotland and I had to wait 5 months for that first appoitment as you can imagine it has been hell coping with this. I also have Akylosing Spondylitis but have been told there cannot be any connection and i am just unlucky |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by EstieSA on Dec 30th, 2007, 3:29pm on 12/30/07 at 12:22:05, artscotland wrote:
Its not that bad! You should see your countryman , piratg, spell....! |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by BarbaraD on Dec 30th, 2007, 4:15pm Topamax has worked pretty well for me over the years, but you need an abortative along with it for the times the beast breaks thru. O2 at a high flow rate (15liters per minute with a NONrebreather mask) is the first line of defense for most of us. An energy drink (Red Bull) is also what a lot of us use. Morphine or other narcs don't work (for the most part) on CH - it's a waste of time and just makes you dopey. Imitrex or ergotomine (Cafergot) are the two drugs of choice for most of us as an abortative. Imitrex given in injections or spray form work fast - the pills take too long. Verapamil has been used by a number of people with good results as has lithium. What works on one of us doesn't work on ALL, and sometimes you have to try several things before you come upon what works for YOU. Read on the left hand side of this board and go to your neuro armed with things that have worked for others and keep trying until you find your magic coctail. wishing you PF times soon. Hugs BD |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by Chappy on Dec 30th, 2007, 5:12pm Art, Man, sorry to hear about your pain. I've been there, as have most of us, and many of us waited years for a diagnosis and treatment that worked. You'll do yourself alot of good if you read through this site thoroughly, and the OUCH site from the link on the left, take notes, and bring them to your doctor. Few doctors have experience treating CH, so if you bring them info, and you're lucky, they may learn along with you. |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by Chappy on Dec 30th, 2007, 5:35pm Art, You said Quote:
Quote:
Quote:
Here are links to the diagnostic criteria for Cluster Headaches in general, and Chronic Cluster headaches. You may want to print these out and take them to your doctor, as even most neuros have little (if any) cluster experience. http://ihs-classification.org/en/02_klassifikation/02_teil1/03.01.00_cluster.html http://ihs-classification.org/en/02_klassifikation/02_teil1/03.01.02_cluster.html Most importantly, Chronic Cluster Headache specifically means a period of cluster headaches lasting more than one year without a single remission greater than a month. Since yours has lasted 5 months, you're not chronic yet, and let's all hope you don't get there! Quite a few episodic clusterheads have cycles lasting many months. This does show you, however, how little many neuros know about the details of Cluster headaches, and how important it is for you to educate yourself, and bring organized information to your docs, and hope to God they're willing to be educated. The neuro is right to get an MRI, especially with increased white blood cell count and swelling, which suggest inflammation. Also, constant pain at a level 7 or above isn't typical for cluster headaches, although few people are "typical." If MRIs and other tests show no "primary" cause for your headaches, and the doctors think you have a "primary" headache condition (meaning they can't find any cause for it), then there are two other primary headache conditions other than Cluster Headache that should be considered: http://ihs-classification.org/en/02_klassifikation/02_teil1/03.02.00_cluster.html http://ihs-classification.org/en/02_klassifikation/02_teil1/04.07.00_other.html Those last two can be ruled out with a course of Indomethicin, because one diagnostic criteria is that they're 100% responsive to it. Also, don't go lettin' the surgeons start cuttin' you up until they really know what's wrong. Alot of us have have dental, sinus, and other operations on our pain side just for the hell of it before being properly diagnosed. I had an unnecessary deviated septum surgery before my diagnoses, which set off the worse high cycle I've ever had. |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by Annette on Dec 30th, 2007, 7:06pm on 12/30/07 at 13:05:30, chewy wrote:
I agree with Chewy ! An abcess can cause sudden large swelling of the face near the jaw and causing jaw pain and since the mandibular branch of the trigeminal nerve goes there it can irritate the whole thing and make your CH worse. Have you had a scan to check that it is not an abcess or other problems, unrelated to CH , ? If not you should. You dont need to see a dentist straight away and have any dental work done yet. Your GP can order 2 scans, one is called an OPG ( Orthopantomogram ), which will show any dental infection and an ultrasound which will check for infection in the soft tissue such as the cheek area. Good luck and painfree wishes to you. |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by Chappy on Dec 30th, 2007, 8:51pm Art, Just to be clear, I took your first and we one post to mean that your pain and headaches started about 5 months ago, that this is your first such episode, and you didn't mention being a cluster headache sufferer before this. You said a neuro suggested chronic clusters based on this current 5 month episode, is that correct? If that's the case, then I think a few people here are suggesting that what you've described doesn't sound like typical cluster headaches, and you should push for scans to look for other causes while also seeking treatments that could alleviate the pain if it is cluster related. Most of all, don't let them leave you in pain while they make you wait months in between scans. If what they've given you doesn't work, call the doc and suggest the next preventive and abortive recommended by othrs on this site if your doc doesn't have one in mind. |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by artscotland on Dec 31st, 2007, 12:08pm Can I first of all say a big thank you to every one on here as I have had more response on here in a couple of days then 5 months of dealing with the so called doctors. We have estabished today that the face problem is trigeminal neuralgia based on the way i dont react to pain in my mouth area ie no dental pain and my mother also has the same condition, she also years ago went through having lots of her teeth out before they found out they were wrong and it was neuralgia. Neurophen started to reduce the swelling slightly but no reduction in the pain and the doctor has started me on a course of Carbamazepine Since this has started 5 coming upto almost 6 months ago now it is the first time i have ever had head pains, i have had a CT scan which is clear lumber punch which did show raised level of proten which at the start did lead off to viral meng but was ruled out by the nuro a long time ago with other bloods. Even though I have the high white blood counts my nuro is so convinced I have cronic ch he has ruled it out and said it is not connected and is letting other doctors work on that, he says very few doctors or even neros would have been able to reconsise CH but it is a specilist area for him he gives his reasons as the diliation of my left pupil, which is still diliated the headaches hyave not moved since this has stared sit on my left temple not moving the main painful headaches come at night about the same time I dont know I just know I am the guy in pain every day always with a headache igt never goes away when it is bad it is so bad I cant discribe the pain is so unreal and the help i am finding on here is help which is the biggest step forward i have taken in months, I do not take what people say as it but at least it gives me a starting point to moved on from so a big thank you everyone and i hope you all have a happy new year, well at least i can consider getting drunk i am going to have a headache anyway in the morning!!!! |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by vietvet2tours on Dec 31st, 2007, 12:17pm Well one day here and look how much your spelling has improved. Just imagine what it will do for your head. Potter http://i15.tinypic.com/2dwi3ag.gif |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by Linda_Howell on Dec 31st, 2007, 12:43pm If what you have is CH...getting drunk isn't the smartest thing you could do, as alcohol is a sure-firer trigger. |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by deltadarlin on Jan 1st, 2008, 1:12pm Art, Not a ch'er here, but I' confused. Have you had ANY relief at all from the headache? Does it go away at all and come back or has the pain been constant (forget about pain levels at the moment). 'darlin |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by richcurtin on Jan 2nd, 2008, 1:23am Yes. When I get a headache coworkers and friends notice swelling above my right eye. I also get some at my jaw next to my right ear. PS teeth are fine. |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by Chappy on Jan 2nd, 2008, 2:32am art, Both clusters and trigeminal neuralgia have been reported together, and this is known as cluster-tic syndrome. Its important to know if you have both, because they have to be treated separately to provide relief. I would recommend visiting http://ihs-classification.org/, and clicking through to the description of condition 13.1.1 to see if it fits your new symptoms. Trigeminal Neuralgia is mostly pain in the face/skin, rather than a headache, but combined with clusters maybe it could explain both. There is a nerve ganglion in the jaw just in front of he ear that could explain your swelling. Many clusterheads have reported swollen gangion "lumps" during cluster attacks that are called "cluster lumps," but usually in the back of the neck, roof of the mouth, or under the jaw. I have personally had a swollen knot on my jaw in front of the ear on my pain side a year before my headaches started that my doctor dignosed as a "ganglion cyst," so its possible that this is something similar for you. These lumps seem to go away when the cluster attacks end, so hopefully with proper therapy yours will as well. Not to be a stickler, but though your neuro claims to be a specialist in cluster headaches, a dignosis of "chronic" clusters can't be given until you have had them for over a year. That's the criteria for diagnosis, and I say that to give you hope, because chronic cluster headaches is not a diagnosis you want to have, since fewer than 10% will ever be free of them. |
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Title: Re: Anybody Else had swollen face and jaw pain? Post by Chappy on Jan 2nd, 2008, 2:39am on 01/02/08 at 01:23:18, richcurtin wrote:
P.S. - swelling above your eye, assuming its your eyelid, is a dead-ringer for cluster headaches (along with pupil dilation as your neuro mentioned). |
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