Last night my head started hurting on the left side and then it got BAD, BAD, BAD!!! It was going through my left eye all the way to the back of my head on the left side. Felt like someone was stabbing me with a knife from the front of the left eye all the way to the back of my head.
I've had this before and know it's the TN . . . . BUT this was the absolute worst one I've ever had!! Oh my STARS above. I thought I was going to die!
We had ice packed around my head and it honestly was not even helping like it has in the past. I took 2 vicodin (7.5 / 350).
I also have esophageal spasms and wouldn't you know it about 4 a.m. that kicked in. I ended up taking 3 nitro glycerin for the spasms and a xanax.
As of this moment it has eased off. But I"m here to tell you it was the worst pain most of the night and into this morning. You've heard people say "worst headache of your life". Yeah, this one scared me.
My husband stayed home with me until lunch. He just left for work about 30 minutes ago.
He also had to give me 100 mg. solu-cortef shot because of my addison's disease.
What do you all do when the pain gets THIS BAD? Just grin and bear it or is there something else?
Understand I'm not a Dr, but your symptoms sound like occipital neuralgia without asking further questions. You say you know it's TN, but when does TN cause pain in the back of the head, it is outside the trigeminal nerve territory.
This link from this site may be of benefit,
http://www.dizziness-and-balance.com/disorders/central/migraine/occipital_neuralgia.html
Occipital neuralgia has a neck connection as possibly does TN, maybe it's a sign you should be looking at your neck as a cause for both.
Addison's disease can be autoimmune and affect muscles, which in turn may affect the symptoms you describe. Muscles are stated but why not other soft tissues in the case of autoimmune? which can also cause TN, occipital n.
One other observation being it is is more common in western societies, autoimmune? solely or in conjunction with our environment- work/ family stress, or the crap, rubbish we tend to eat. What we eat as you can probably appreciate affects our health. The best diet to address many western illnesses in my book is the 'pack it in diet'- and how many illnesses are we talking about- many (TN who knows?). This diet, is cheap, requires no on going payment plan, and anyone with any illness should consider following.
Unless anyone should consider I'm advocating treatment, when does a healthy diet constitute treatment? Food built every cell in our body and for necessary function is important, ongoing.
I've mentioned this before and sorrow to be a bore, and I'm not saying chipperoo it pertains to you directly, but I don't understand anyone with any illness not considering what they eat. Type 2 diabetes for example is being helped by clean living- of which for the main the 'pack it in diet' would serve.
Again I think I've said it before but I would be out of a job, if stress and diet was supported on an individual basis, a better diet would deal better with stress issues.
Not trying to hijack your thread, but in responding you had no previous replays and I do think the above important.
Yes, when I put my specific symptoms in I got ON also, which I've had in the past. But what I experienced in the past was on the bottom back of my head. This was a stabbing in my left eye and went around / through my head to the back (on the top side). Not the bottom part. It was literally like someone took a knife and, plunged it in my eye and it came out the back of my skull.
Before when I had ON I got a shot in the back of my head and it was SO MUCH better immediately!! Guess I need to get hooked back with that neuro.
As far as the "diet, "clean eating". Yes, I could do better in my life for sure and I do think better eating is a key to everything.
Thanks for your reply. :)
No problem.
I would include myself in, I could do better with the clean eating, but as human nature calls it, as yet I'm not suffering, the wrong way round for sure.
I should have said clean eating is a key to some things . . . . not everything. Let me clarify that. :)
I'm sorry that you are in so much pain! We do have many symptoms in common. The one sided knife through the eye pain is one I had all last winter. I hurts like nothing else does. Such a sharp, searing pain. Mine would go through the eye up to the top of my head or through my eye and down my nose. I would also get aura, light sensitivity, nausea, vertigo, blurry vision, tearing and runny nose on that side. Plus the pain and tingling over my eye or around my temple. I get ON symptoms as well and after those attacks I was diagnosed with symptoms of migraines and clusters.
Some people do get relief with migraine medication like Triptans and if I catch it early enough even Advil Migraine would sometimes knock it out. If not a dark room and something to put me to sleep. Many of us that have TN also have migraines...they are also a disorder of the trigeminal nerve.
I really hope that you get some relief.
Jane
Hi, ChipperRoo ... I have the same symptoms on the right side. I put ice in a baggie and lay on my side with my eye on the baggie until it's pretty numb from the cold. I also put heat around my neck because the neck muscles tend to tighten from the pain. I get good relief from Imitrex (sumitriptan), which is prescribed for my migraines. As JustJane said, they're so often related, I believe. I also take Percocet (oxycodone) for pain from a herniated disk. Sometimes the Imitrex and Percocet together work miracles. But I have to lie down and doze off when I combine the two. I miss a LOT of work.
You poor thing. Strangely, this pain usually starts in the morning for me between 4-6 a.m. and will usually lift about 12 hours later. Once it lifts, it's almost like it never happened at all. I find this to be so WEIRD! Sometimes I get accompanying pain behind my ear on the affected side. That concerns me because that's where they'd go in for an MVD.
Just reading through more carefully. Last winter I was plagued with these migraines or around the eye TN pain or whatever it is. And when I started physio for my neck after the second treatment I never had another migraine. Not one. And I was getting it almost every day. I have had a couple of them this winter but my TN in general has been terrible. Winter is not good for me. The thing with physio is I have to go every week to see a difference over time. That is expensive but also what is wrong with my body that it needs adjusting constantly. I do have a bulging disc at c5-c6 that was "stable" during my last MRI but other then that there is nothing that showed as a problem. So this is just some chronic invisible problem in my neck?
aiculsamoth said:
Understand I'm not a Dr, but your symptoms sound like occipital neuralgia without asking further questions. You say you know it's TN, but when does TN cause pain in the back of the head, it is outside the trigeminal nerve territory.
This link from this site may be of benefit,
http://www.dizziness-and-balance.com/disorders/central/migraine/occ...
Occipital neuralgia has a neck connection as possibly does TN, maybe it's a sign you should be looking at your neck as a cause for both.
Addison's disease can be autoimmune and affect muscles, which in turn may affect the symptoms you describe. Muscles are stated but why not other soft tissues in the case of autoimmune? which can also cause TN, occipital n.
One other observation being it is is more common in western societies, autoimmune? solely or in conjunction with our environment- work/ family stress, or the crap, rubbish we tend to eat. What we eat as you can probably appreciate affects our health. The best diet to address many western illnesses in my book is the 'pack it in diet'- and how many illnesses are we talking about- many (TN who knows?). This diet, is cheap, requires no on going payment plan, and anyone with any illness should consider following.
Unless anyone should consider I'm advocating treatment, when does a healthy diet constitute treatment? Food built every cell in our body and for necessary function is important, ongoing.
I've mentioned this before and sorrow to be a bore, and I'm not saying chipperoo it pertains to you directly, but I don't understand anyone with any illness not considering what they eat. Type 2 diabetes for example is being helped by clean living- of which for the main the 'pack it in diet' would serve.
Again I think I've said it before but I would be out of a job, if stress and diet was supported on an individual basis, a better diet would deal better with stress issues.
Not trying to hijack your thread, but in responding you had no previous replays and I do think the above important.
Thanks for the replies. It can be so confusing as to "what is this"? TN, ON, migraine, are a combo? My head is still hurting but not as bad as last night. Actually my left eye is still hurting but not as bad.
Just FYI, I have a bad back also with bad discs. Hmmm . . . that's interesting.
From you response Jane I'm assuming physio was of some benefit to your TN seeing as your migraines stopped after the second treatment, yet you presumably carried on with treatment.
I agree private treatment, it can be expensive ( here in the UK, if the NHS used therapists privately, I believe they would save alot of money. NHS Physio here which used to be hands on seems to have evolved into a chat and a generic exercise sheet.)
This is where I'm slightly dissapointed, this is a big assumption, but did your physio not give you advice as to therapeutic exercises, posture changes etc.? all very well to treat the dysfunction, but addressing the cause is paramount for patient satisfaction and resolving symptoms, and may have helped in addition to you saving cash.
A patient on this forum or the other, treated her 'TN' purely through therapeutic exercises, and expressed her disappointment that more patients didn't try it.
MRI is going to show potential pathology of the neck, but it won't show this muscle is tight or this joint doesn't move as it should etc, so yes a potential neck dysfunction would seem invisible. A therapist during examination can often demonstrate, and/or can find the dysfunction. A lot of people can manage their musculo-skeletal symptoms themselves if they choose, with the right advice.
Chiperoo, occipital neuralgia is connected to the neck, neck pain has been demonstrated to cause TN.
Migraine has recently been shown to be connected to TN, migraine has been shown to be connected ( though not exclusively) to neck dysfunction (? demonstrated by justjanes results in two treatments?)
One eminent, and indeed respected neurosurgeon states in circa 40% of cases, neck movement aggravates/ relieves TN symptoms. Is this due to vascular movement in relation to the nerve root, or mechanical irritation of the trigeminal complex via the neck to which it extends? Other/ same neurosurgeons state a lot of patients present having experienced whiplash. Take your pick, but I know which cause I would be looking at first (bias) but- the one which requires potentially non invasive procedures and potentially less meds.
Very interesting! Thanks for your thorough and thoughtful reply!
Just wanted to respond to this aiculsamoth. I have been off the forums for a few days. Yes, physio and acupuncture does help me overall but like I said I have to go every week and even then I have a lot of unexplained pain. I think that my extensive physio last year lined up with a remission over the summer and I may have jumped the gun a bit in saying that it took all of my pain away.
I have pain on my face, back of head, neck, shoulder and arm mainly. But I also have RLS, pain in my ribs, hips and sometimes legs. I don't talk about all of this very much because it is still under investigation. When I have physio she focuses on my neck as that does seem to be where most of these problems are stemming from. And my pain does seem to line up with what she can feel is tight in my neck. Sometimes it is at the base of my skull or the side of my neck. We do know that my job aggravates my neck pain as I am in front of a computer a lot. I cannot quit my job though so I am trying to minimize that as best I can. Lifting and bending also seems to be a problem so I have become very cautious day to day. But I have been off work for almost two months ( I work a lot in the summer and enjoy some extra time off in the winter) and I still have these flare ups. Winter seems to be bad and also my cycle seems to rule all of my pain. My jaw might hurt for a week or my tongue or my nose and cheek and then disappear. I then might get occipital pain for a few days. Or I have the odd day where I have very widespread pain throughout my body.
And I am telling you that these things come and go as they please regardless of what I am doing or not doing. There is obviously something more wrong with me then just structural. My GP thinks that I have Fibromyalgia. I find the descriptions of that disease to be hard to grasp. But, overall, I do have almost all of the symptoms. I do seem to have something wrong with my neurologically or to do with inflammation. My mom has MS. I don't but I do have a lot of very strange things going on. I am waiting for a referral to a pain clinic. My GP was on maternity leave. I need a new neuro as well as mine retired.
Anyways, I guess my point is that things are all over the map and nothing is cut and dry.
aiculsamoth said:
From you response Jane I'm assuming physio was of some benefit to your TN seeing as your migraines stopped after the second treatment, yet you presumably carried on with treatment.
I agree private treatment, it can be expensive ( here in the UK, if the NHS used therapists privately, I believe they would save alot of money. NHS Physio here which used to be hands on seems to have evolved into a chat and a generic exercise sheet.)
This is where I'm slightly dissapointed, this is a big assumption, but did your physio not give you advice as to therapeutic exercises, posture changes etc.? all very well to treat the dysfunction, but addressing the cause is paramount for patient satisfaction and resolving symptoms, and may have helped in addition to you saving cash.
A patient on this forum or the other, treated her 'TN' purely through therapeutic exercises, and expressed her disappointment that more patients didn't try it.
MRI is going to show potential pathology of the neck, but it won't show this muscle is tight or this joint doesn't move as it should etc, so yes a potential neck dysfunction would seem invisible. A therapist during examination can often demonstrate, and/or can find the dysfunction. A lot of people can manage their musculo-skeletal symptoms themselves if they choose, with the right advice.
Chiperoo, occipital neuralgia is connected to the neck, neck pain has been demonstrated to cause TN.
Migraine has recently been shown to be connected to TN, migraine has been shown to be connected ( though not exclusively) to neck dysfunction (? demonstrated by justjanes results in two treatments?)
Hi JustJane,
I personally wouldn't assume something more isn't going on.
The following is personal experience, and no advocation of anything, although I reckon anything specific mentioned if at all I would like to think I could back up.
At a guess 80%+ of anybody attending clinic, in the absence of trauma which are the majority, suffer with something else, something else which is often the bigger picture. Unfortunately in the UK if you suspect something else either they don't listen, or their G.P. doesn't listen unless the short term outcome is extreme. Private referal for further tests is often prohibitive for patients, so they often want patching and if they have some self help measures thrown in and they get results patients are happy enough. For this reason I don't often refer to medics/ G.P's, I'll explain the bigger picture, and insist if the outcome could be catastrophic, if they don't follow advice.
Again, just about anybody would have no need to see me, if they followed a healthy life style, and avoided stress or found an outlet for it and diet- both in this day and age not easy, so like the G.P. with his analgesics you could consider I patch a problem but... If you manage to remove enough of the some of the parts of the whole, as in the symptom pattern doesn't emerge be it for lumbar disc problems, tennis elbow, headaches, repetitve strain, or indeed TN ( whether vascular in origin or otherwise) patients are happy- I don't pretend always many parts of the whole are beyond us but hope we recognise this before the patient has the need to remorgage.
Most patients are not receptive to the other components, besides I have back pain, I'm here paying my money, you sort it, as with their G.P. possibly due to the ideas of western medicine ' here's a pill, doesn't work, try this pill. doesn't work, lets try this procedure, doesn't work, let's try the knife'. Patient sounds 'good', patient 'that didn't work or not for long what next'? G.P.' we can't help you any further, here's more meds'.
Interestingly, here where I work, the asian population are more for the other, and a great source of referrals, which is great, although they do like to bring their extended family to clog up the waiting room, it however is their supportive culture which I understand, though I need more chairs or a building extension for comfort.
Others on the forum have alluded to it, and I don't direct it at you Jane, the sum of the parts make the whole, and in the case of health they are many, remove some of the parts and you won't have the symptoms, in the majority of illnesses, especially those that effect the westerm population. This is demonstrated in Diabetes and heart disease the biggest metabolic diseases in the western world. Twenty years ago, this was ignored.
Why should this not be extended to lesser diseases? TN, one of them ( not talking pain scales).
If individuals followed, a healthy lifestyle I wouldn't have enough folk walking through the door to be in business. I remove a part of the whole and they feel better, which unfortunately then means they are not open to the rest. From a business point of view, if your not open to the rest, fine we'll see you in two months regardless of whether you book now.
If I haven't made myself clear, consider the typing pool, where one person sues due to repetitive strain injury- the person next to them has the same work station and work load but is fine. The RSI individual has an alcoholic hubby which wants his supper on the table at 7.00 pm sharp or he chooses to beat seven bells out of somebody, so time wise take out is on the menu every night. An extreme situation sure, but is that individual going to better off healthwise than the other?
TN , like any other disease/ illness is going to be multi factorial, and in pushing the neck as a 'cause' I don't pretend otherwise, but I do consider it a big part of the pie.