I'm newly diagnosed with adrenal insufficiency (not sure which type yet, but I'm pretty confident it's not primary). My 'pre-diagnosis illness' became really apparent around 6 months ago (although I've been getting symptoms probably for around 3 years, just only after exercise or stress events), and I became unwell on a consistent daily basis.
However, around 8 months ago, I started developing symptoms of trigeminal autonomic cephalalgia, so around 6 months ago my neurologist diagnosed me with cluster headaches. Apparently there is a link between pituitary diseases and cluster headache/TACs, which is why I had the blood test which identified my low cortisol and led to the synacthen test and AI diagnosis. Yay for my neurologist spotting that some of my symptoms weren't typical TAC symptoms and needed further investigation! I have however been intolerant to every daily preventative treatment that we have tried for the cluster headaches, so they are currently untreated (except for sumatriptan injections which I can take up to 4 times a day to abort when an attack starts).
So essentially, for the last 6 months I've been dealing with untreated AI and excruciating cluster headache attacks. I'm on hydrocortisone for AI now, and I was just wondering whether anyone else has been diagnosed with both conditions? How do you manage your hydrocortisone dosing with the cluster headaches - do you stress dose on days that you have lots of attacks?
PS, for anyone wondering what cluster headaches or TACs are, here's a wiki link - the term 'cluster headache' gets misused a lot to describe tension-type headaches, which are very separate to this condition (true cluster headaches are quite rare) :)
Good morning all!! Looking for advice dealing with chronic nerve pain from trigeminal neuralgia caused by oral surgery. I stick to a anti inflammatory diet and Dr solomans balm with the cbd helps take the edge off but nerve pain is real y'all and sometimes gets worse when I consume my beloved mmj!!! My drs and neurologist are starting to recommend strong pharmaceuticals but I'm strongly considering dealing with the pain vs the rest of my life on prescription drugs.
Any recommendations, advice, knowledge or whatever is appreciated. Happy Wednesday y'all!!
I had several years of neck and jaw issues which were misdiagnosed multiple times. Tinnitus, lancing pain in the temples, a clicking hyoid bone, all sorts.
After prolonged agony and endless pills I decided to go down the chiropractic route and the issue was solved so quickly I actually felt annoyed at myself for not making the decision sooner.
Years of bad habits (reading while lying down with a pillow propped behind my head being one of them) had essentially contorted my vertebrae, caused hypertrophy in a muscle, etc.
Trigeminal neuralgia can itself trigger spasms in the jaw which, over time, can cause structural issues in the TMJ or even be completely misdiagnosed as TMJ itself. For many of you it really is down to the upper cervical region.
The good news is that for some of you the cause can be gradually undone. But it takes time. I used to think chiropractics was quackery, but it’s now very much part of the array of treatments which can have a massive impact on TMJ sufferers.
Hope it’s of some help to you.
https://youtu.be/usCe8eAaJO0
A small, much-needed rant! We're having some external building done work to our ground floor flat and I really underestimated how bad my TN would flare up because of all the drilling, banging, shouting and chaos outside. There's literally nothing I can do about it though and they're going to be doing repairs in our front and back garden for 8 days, starting at 8am every day 😰 They have no idea how much pain they're accidentally causing me just by trying to do their jobs 😅 They're drilling right outside our front door as well so I can't even leave the house right now to go somewhere more quiet because there's a massive blue tarp and building equipment in the way...
Anyone got any advice for how to stay sane with TN in a loud environment?? I'm really not sure how I'm gonna cope over the next week! They've only been here 2 hours and I'm losing it, haha. Chronic pain sure does make life complicated, doesn't it...
PLEASE contribute to this as there is no telling how many lives inside Australia could be changed by this. Currently there is just not enough done for those suffering this condition and it has to end!
So I just found out my TMJ was an incorrect diagnosis and I’ve been battling the wrong condition for 10 years and I actually have Trigeminal neuralgia. I’m being treated with nerve blockers and will possibly have surgery. I’m making this post to let others know that you may be in the same boat as me. If you feel your TMJ is an incorrect diagnosis please seek a second opinion and don’t waste your time/money battling the wrong condition. I wish I had been diagnosed with the neuralgia 10 years ago but what’s done is done. From what my neurologist told me it’s extremely common for Trigeminal neuralgia to be misdiagnosed as TMJ and while Trigeminal neuralgia is rare it’s not impossible for a doctor to be wrong. I hope you’re all able to find solutions to your pain no matter what’s causing it!❤️
This might only be cool or new to me, but. I know for a lot of us, even though we can't smell, we can still "feel" some smells--like the sting of ammonia. I've wondered for a while what's up with that. Then today I was reading a paper about anosmia that kept dropping the term "trigeminal," which lead me to this:
The trigeminal nerve is a facial nerve that does tons of stuff, like carry information about pain and temperature, but relevant here is that it carries information about airborne chemicals while being separate from your olfactory nerves. For ~regular~ people, trigeminal input and olfaction both make up the "sense of smell." So this nerve is why you might be able to sense things like cat pee or rubbing alcohol despite being totally anosmic!!
I wonder if this plays a role in why so many congenital anosmiacs are late to realize we can't smell. When I was younger, I thought trigeminal sensation WAS smelling; my brother had to explain to me that smell isn't a physical feeling in your nose..
After I got that figured out, I kind of assumed something like this must be the case--that there's some way of sensing what I think of as "fumes" that isn't olfaction--because I knew I could do one but not the other. But I was super excited to learn the actual science behind that, so I thought you guys might be interested too :-)
I also read that trigeminal function is also sometimes impaired with anosmia, so now I'm wondering what a normal trigeminal response is like. I know for me I need to pretty much have my face right up in a cat box, bottle of acetone, etc to get that sting. How about you guys??
(P.S. Most of the information I could find is in abstracts that I can't access the full paper of.. I would be super interested if someone here can access either of these papers on the trigeminal response's relationship to olfaction.)
Hi All
I'm very confused, because seems both things Trigeminal Neuralgia and TMJ shared similar symptoms and no idea what it is.
I always had this sharp pain in my teeth, but I grind my teeth a lot and had gum surgery many years ago so that cause a lot of teeth sensitive and I always thought that may be the case.
I went to NUCCA few weeks back and started with this extreme Jaw pain, feel like the pain is in the bone of the jaw and all teeth are extremely sensitivity, like if I drink even water or eat then the jaw starts hurting
What would you say is the difference between the both? I only have extreme pain on the bottom and upper jaw and extreme sensitive on the teeth, specialty the one with crowns and had a lot of grinding on them,
I am pretty much bed bound and near death. I am given one 4 mg hydromorphone pill every 6 hours, this is not near enough and I am only seeing relief from this regimen in the morning for about an hour. The rest of the day is spent in agony, I believe I am "pain sick" nauseous, throwing up, high blood pressure.
I have cried to these doctors, and have now typed out 4 letters to this pain doctor and he told me he will never alter my pain medicines yesterday and that this is the most relief I will get in Texas. I have been wanting to die ever sense, I am so tired. I need help. Please, someone tell me what to do before my mental health implodes and I lose my life at such a young age. I cannot do this another four years, I have tried 23 other medications and have had two brain surgeries and the only relief I have had has been from ketamine and hydromorphone, weed and kratom don't work. Yoga, acupuncture and all of that is not keeping me from burning me alive in my mouth. This is extremely urgent, I haven't slept in two days, I am in so much pain I am currently locked in my room researching euthanasia.
This feels like it is in the process of ending badly. My name is Tyler Maddux and I will do anything, I see this as a last cry for help my doctors are just ignoring me. My emotional and physicals pain are too much for me too bare. I don't deserve this, is there anything I can do to get my pain to a constant 6 or 7?
Does anyone here have recommendations for neurologists in New York that specialize in treating/diagnosing Atypical Trigeminal Neuralgia?
Does anyone else get both? Anything about them being connected? For me they never happen at the same rime. TN symptoms primarily on the right side, Meniere's was primarily on the left but now affecting the right almost equally.
I don't think I have an official Meniere's diagnosis yet because I do have occasional light sensitivity and migraines but those are completely separate from my vertigo, ear fullness, heading loss, and tinnitus. Migraines are also far far less frequent than all the other symptoms and never last as long. But so far Meniere's is the leading theory.
I'm in the US. I developed it last year in July. I had to quit work mid-September. My neurologist and I finally found a combination of drugs that keeps the pain to a tolerable level (for now), but due to the side effects I still can't work safely.
My doctor's office recommended I apply for disability, but they never heard of anyone getting approved.
Have any of you ever gotten approved by SSA for disability due to having TN?
Hello everyone, I was diagnosed with TN and am on tegretol, 300mg currently seem to be working except for some days when I overdo the talking or chewing. My question is, I clenched my teeth very intensely for a long while, then started having the familiar toothaches, went to the dentist, had the x-ray and turned out teeth are fine, pain kept getting worse to the point I could not bear it. Had brain MRI which came back clear, so my neurologist diagnosed me with spontaneous TN. My dentist wants me to see a surgeon who is absolutely sure I have TMJ, I will book an appointment but I wanted to see if anyone has a similar experience. My theory is, because my symptoms are a mix of tmj and TN, could it be that my joint is damaged or misaligned and it's grinding on the trigeminal nerve? I read it's possible but it would help me a lot if you have similar experiences and can offer some advice.
Hello, Iv been on amitriptyline for a while for trigeminal neuralgia and it does help for the most part. However I feel like I can’t lose weight no matter how hard I try. Thinking of switching to nortriptyline but I was wondering if A- it helps with trigeminal neuralgia pain? And B- does it cause weight gain?
Hi guys. Looking to hear your thoughts on what I may have and if anyone here had similar symptoms to me and TMJ was the cause.
Woke up over a year ago with vertigo. As that subsided I started getting tingling in my forehead and ringing in my ears. Eventually, I started getting constant pain in my forehead, cheeks, bridge of nose and even ears sometimes. The pain is a dull, pressure like pain that sometimes feels like I am being squeezed or someone is pushing really hard on my face with their fingers. Sometimes though, it's more of a burning pain but the burning pain is never severe, just very present. I also get this burning / pinching pain on my scalp and back of neck along with the pressure. I don't have a dominant side for the pain, sometimes it's in the front of my face, sometimes on the left and sometimes on the right. It seems to "travel". I also have bad ringing in my ears.
I have some jaw pains but they feel mostly like muscle pains.l, like it's sore. If I bite down I feel a pressure building in the back of my jaw. I have some clicking too, but I never got lock jaw and the pain in my face is far worse than that of my jaw.
I don't get shooting pains or stabbing pains so it's not regular TN, but I'm really worried it might be atypical trigeminal neuralgia.
At this point I've seen 8 doctors of many fields. Gotten an MRI of my brain, and cervical, all fine. Also got CT scan of my sinuses, fine as well. As of yet, I have no clear diagnosis and I'm on amitriptyline for over a month now to see if it helps. It doesn't, I am seeing a neurologist at NYU in a month.
After all this time, though, I still cannot figure out what my triggers are. I usually feel good right when I wake up and it gets progressively worse as the day goes, but then some days I'll have a good day for no obvious reasons. I know physical stimulation is a big trigger for TN but for me, it's the opposite. If I walk or touch my face, chew or massage myself the pain actually gets better, but as soon as the stimulation is gone it comes back.
Any thoughts or insights would be greatly appreciated. Thanks.
Almost 3 years I have awful pain in the right side of my head. The pain occurs everytime when I try to touch my head so it's impossible to me to lay on my pillow and to wash my hair properly. I've been to 6 neurologist. They said that it could be ON or trigeminal neuralgia and gave me the standard prescription - Tegretol and antidepressants. When I stop Tegretol the pain comes back. I can't take Tegretol for life, this medications causes me acne. So is there a difference between ON and trigeminal neuralgia and what should I try since I decided to stop Tegretol?
Hey everyone,
Male: 28 years old, don't smoke, drink on occasion, no major medical history.
I have had 2 GPs tell me I have TN, I presume T2 but they didn't really know. The GP told me to just take carbamazepine because of these cases just resolve. I hope anyone has time to listen to me, I feel so hopeless.
2 weeks ago I had a few episodes of intense itching on my scalp and my left eye, this overtime developed into a more burning pins and needles sensation. The episodes lasted 30-60 minutes, otherwise I didn't notice any numbness etc. I had recently had allergy skin prick testing done and thought this may all be allergy related.
I saw the GP thinking it was allergies, he told me I probably had TN (I was shocked). I had an MRI and MRI-angiogram, no significant findings.
My pain is usually a 1-2/10 so not even bad but they last for 30min-3hours, without the drugs (carbamazepine) the flare ups were maybe a 5-6/10. The fear of the future and the loss of my past self is what I cry over the most. Even on the drugs I feel dumber and detached. I read about all these TN horror stories and I have lost all hope.
My research into the world of TN, I have to say it has left me feeling isolated, hopeless and at times I even brushed against suicidal thoughts (I have a son and could never see myself ever doing it).
My fears revolve around this being the atypical form. I have read the following and felt absolutely destroyed;
- surgery often doesn't work
- drugs don't work as well
- remission often doesn't occur
What am I meant to do then?
I am seeing an oral medicine specialist who specialises in orofacial pain. I also have clicking in my TMJ joints and I am hoping and praying that it is all a misdiagnosis.
Has anyone got any insights, anything hopeful or positive? I don't know why I am messaging here, I am just so sad and lost.
Edit: I am 28 years old, given I have only had this for 2 weeks, could it realistically ever just go away?
Hi everyone. About a year ago I saw a neurologist for the first time about headaches I’ve been having since I was young. I was diagnosed with trigeminal inflammation causing regular migraine and mild cluster migraine. The headaches I experience are right under my brow bone only on one side & an extremely consistent painful stabbing like pain. Usually I can massage the area and it feels like my literal eye is hurting/the back of my eye. They cause stuffy nose on the side that the pain is on, a little bit of a teary eye, and a feeling that my ear is clogged. I get these headache usually only around my menstrual cycle, the night before the cycle begins or right at the beginning of the cycle. They make me nauseous and sometimes if they’re bad enough I will vomit. They also make me sensitive to light and sound. I was prescribed verapamil for everyday and rizatriptan for when I felt the cluster like headaches. Although it helped everyday headaches, I stopped taking verapamil because it made me really weak and feel faint in the mornings. Rizatriptan works great.
Recently, I’ve noticed some pain in my neck, right where my head and neck connect. When I massage the area I can feel the sensation travel upwards where my headaches take place, by my eyebrow bone and temple. Tonight, I was putting my hair up and noticed a weird Sensation when I touched one spot of my scalp, it was causing a weird pain behind my ear and lower neck. The pain only happened when I would touch that one spot. Once I discovered it, I had about 2 sharp bursts of pain in the area throughout the night that only lasted a second. This is causing me a lot of health anxiety and stress.
I originally was diagnosed after a quick visit and was barely looked at, I’m starting to think I may have occipital issue instead of trigeminal? Or maybe trigeminal and occipital only because of a tight neck? I recently graduated college and am applying to graduate school so I am on the computer hunched over most days which could be a factor. I’m seeing my neurologist again in January but was wanting some opinions beforehand.
I sadly have to take 200 mg to get desired results but oh man. I was hurting so bad I couldn’t close my mouth and I just ran out of dilaudid due to me using a little too much this month because of flare ups and my doctor just cutting my script in half and not giving anything to substitute.
So I’ve been up two days near suicide unable to sleep. My mind has a tramadol prescription and I just decided to give it a try at 3:30 in the morning and now I’m practically pain free with just the uncomfortable tingling feeling which I can live with.
Thank god for opioid receptors lol. Hope everyone is doing well today
I tested positive in late February and then after having shortness of breath for months, it has turned into constant facial pain that moves constantly throughout my eyebrows, nose, lips, jaw, teeth, and cheeks.
It also shoots down my neck into my collarbone and down my shoulder to my arm. It can sometimes make me nauseous and throw up from the pain as I have an ache in the bottom left part of my stomach most of the time and rumbling in it.
The pain is burning, throbbing, and achy and happens on both sides of my face and body. I can literally move the pain by clenching a part of my face or mouth.
This has taken up the past 7 months for me and I don’t see an end to it anytime soon.
Didn’t know if anyone else is experiencing the same thing because I hate being in so much pain constantly.
Diagnosed the past 13 years with neuralgia in my head and face. I refrain from saying trigeminal because one of these doctors...probably the most renowned doctor I've seen, told me he does not think it's trigeminal neuralgia because it's on both sides and he doesn't typically see that. You see 90 perfect of my pain is in my left temple region, behind my left eye, in my left ear with tingling down the jaw line. Beside the jaw line, on the right about 10 percent is on the right side. This is what the doctors are hung up on. Does anyone have any insight? Should I try a millionth next opinion? The other thing I'm hung up on is most people say burning. I would describe it as stabbing and electric. This started immediately following a TBI where I was kicked in the face. I kindly appreciate any insight, help, or even encouragement. Hope everyone has pain free days ahead ❤️
Hello everyone! I'm newly diagnosed, after months of pain which by the end made me want to kill myself, did the familiar mistake of going to the dentist thinking it was a dental issue. I'm on gabapentin for a little more than a week now, 300 a day. I feel great, I thought I would never stop being in agony. My question is, my MRI is clear according to my neurologist, so what's future going to be like? She said we'll slowly lower the dosage and see how it goes, but it doesn't make sense because nothing's really changed, so if I go off the meds it'll start all over again. I was low-key hoping there was something there so we could get it removed, I know brain surgery is not something one should wish for, but having seemingly nothing wrong means there's also no way to solve it. Has anyone had a similar experience?
First of all, THANK YOU to everyone who messaged me or commented on my posts leading up to the surgery. It was immensely helpful.
Here’s how it all went:
I had a MVD procedure done first week of this month for atypical TN. They found a venous compression on the trigeminal nerve and separated it with some padding. This fixed the ATN in my face.
Unfortunately, through the powers of subtraction it was clear that there was more going on in there. The neuralgia I had in my ear and sinus was magnified to an almost indescribable degree after the procedure, and the trigger points on the back of my head were worse.
My surgeon theorized I had a rare simultaneous case of atypical Glossopharyngeal Neuralgia. He recommended we go back in there and check it out while the surgical opening was still not scarred over.
At this point I was torn. There is a lot of data online suggesting delayed relief following MVD is common. The surgeon said this is true sometimes, but the specific location of the magnified pain made him believe there was another nerve being compressed.
The night I spent thinking it over made the decision simple. No amounts of high grade hospital pain meds could touch this amplified nerve pain. I finally understood why this is called the suicide disease. So, I figured I had nothing to lose and let’s get back in there.
Surgeon found part of the Glossopharyngeal Nerve tangled up with an artery. He sectioned off the contact point, as it was too meshed to install padding in a sensible way.
I woke up terrified that the procedure hadn’t worked, as I was in pain (two head surgeries in a 5 day span will do that). Thankfully within a few hours the surgical pain calmed down enough to reveal that the nerve pain was fading.
The ATN on the front of my face was gone within a few days after the first procedure. The worst of the GlossoNeuralgia was gone within 24 hours of the second procedure; and its remnants fade more every day.
Was in the hospital in between the two operations and spent a couple days in the hospital after the second procedure. Each operation took around 4 hours.
I had a very experienced surgeon at a leading hospital in the US.
After both procedures were finished, recovery has been shockingly easy. I’m taking it easy, physically, but I’ve been able to do computer work no problem.
My ear felt clogged for a few days after the procedures. So far I have not experienced double vision, or spinal fluid leak (that I know of), or other
... keep reading on reddit ➡None of the other medicine worked, none of the surgeries worked, I made opioids my last resort right before suicide. It’s been nearly a year and my life is nearly normal now. I mean yeah I have to snort dilaudid a few times a day, some nights in higher doses than others, and no there’s not an opioid high anymore, But I get to be normal. Have a job, go to school. And when I’m really suffering I know there’s actual relief. I can be in so much pain I’m on my knees, than snort 4-8 mg of hydromorphone and I’m back to where I can handle it. The key is to never use so much it goes away, just enough to where I can handle it. This is the best tool I have been given, that 60% suicide rate didn’t effect me. I won’t be another statistic because of this class of drugs.
So next time you’re thinking about all of the obvious negatives associated with opiates, remember there are people like me who actually need it. I was stuck in my bed 24/7, a little constipation and potential withdrawal of the doctor fucks up is totally worth this life change. Thank this community for all of the answered questions and support the last year, I hope everyone is making the most of their situation.
Edit: also if you’re reading this and now the scientific reason as to why I could never feel codeine at all no matter the tolerance until I took 200 mg and then I just got itchy with no other effects. But I got so itchy I was miserable. Does it have to do with cypd26?
They’re supposed to be a natural option and I’ve never been this desperate for relief but I ordered some and didn’t know if anyone had experience with them.
Only saw a couple reviews but didn’t know what to expect.
