Nerve pain all over scalp?

[Fferrari13]

Hi everyone. I have had scalp shooting nerve pain, tingling, numbness everyday for the past year. It started after seeing a chiro for some back pain. Have had a MRI with only a c5 c6 disc bulge, tried so many medications, PT, osteo, acupuncture, the natural route and recently went to a neurologist who just diagnosed it as some kind of migraine - I tried some migraine medication and it did nothing. I’ve had severe anxiety over this the past year and it has been debilitating. I barely leave my house.

My cranial osteo has said it in structural in my scalp bones (so random?). I’m actually struggling to believe that me at 34 years old is completely debilitated from this pain that no one seems to really have a proper answer for. I’m seeing patterns in myself and beginning to think it’s TMS. Can anyone help?

 

[JanAtheCPA]

Hello @Fferrari13 and welcome. To help us help you please tell us why you are looking at TMS (which seems very likely). Hint: think psychologically, not physically!

We always recommend that people read at least one book by Dr John Sarno MD to get started - since your symptoms are not related to muscles or joints I would recommend either The Mindbody Prescription or The Divided Mind. Also please review the information at the home page for tmswiki.org.

If you do those things you will be ready to ask more specific questions that we can help answer!

 

[Fferrari13]

Hello @Fferrari13 and welcome. To help us help you please tell us why you are looking at TMS (which seems very likely). Hint: think psychologically, not physically!

We always recommend that people read at least one book by Dr John Sarno MD to get started - since your symptoms are not related to muscles or joints I would recommend either The Mindbody Prescription or The Divided Mind. Also please review the information at the home page for tmswiki.org.

If you do those things you will be ready to ask more specific questions that we can help answer!

hi! I am actually reading Heal Your Back pain and plan on reading the others. I heard about John Sarno a few months ago, and I’ve noticed there has been times in the past year where I have suspected in myself that I was creating my own symptoms, and then they would miraculously calm and I would be able to go about my day normally, until I was either reminded of my condition or felt a flare up and totally lost control and symptoms took over. I would be getting better but then something would happen (eg the diagnosis of migraine at the neurologist) and I would completely fall apart and was unable to do anything coz pain levels were so high.

When all of this started happening, my parents moved from Aus where I live to Italy and I was devastated, I’m also a business owner and our sales were very up and down so I was struggling. Anxiety levels were through the roof. I’m also thinking that this pain is preventing me from moving forward in my life, getting married and having a baby (which is what I want) because the longer I have the pain the longer I am void of all responsibility and have an excuse to just “do nothing”

 

[JanAtheCPA]

That's very helpful @Fferrari13! I would certainly recommend that you check out our free SEP - Structured Educational Program on the main tmswiki.org site. There's no sign-up or registration required, and it's in easy one-day-at-a-time sessions.

The Divided Mind is Dr. Sarno's last book, and I like it because he condensed his theories (as revised over the years) into four efficient chapters and turned the rest of the book over to five other MDs and one psychologist. That being said, even this book was published in early 2007, which means it was being written almost twenty years ago. It's important to recognize that the neuroscientific understanding of chronic mindbody conditions has come a long way since then -this knowledge is growing exponentially, in fact. I think it's important to branch out rather than spend time reading more of Dr Sarno's books - as much as we love and honor him here!

Other resources to consider, which offer different perspectives:

Hope & Help For Your Nerves by Claire Weekes is ironically my second choice after Dr Sarno - I always say that it's the second book that saved my life and it's ironic because it was written in 1969 - 50+ years ago! It has saved, and is still saving, thousands of people world-wide from disabling anxiety. Awesome little book - absolutely essential to anyone with TMS, because we ALL have anxiety. Dr. Weekes was Australian, FWIW.

Chatter, by Ethan Kross - on the other end of the spectrum this is a brand-new (2021) book by a neuroscientist and psychologist who has been studying our inner negative dialogue for decades. This is the result of his and others' research (and half of the book is footnotes and an extensive bibliography, so it's not as long as it seems). I downloaded it from my library after a number of weeks on hold - and then bought it for my kindle because I think it's kind of a must-have, because it's laid out as a ten-point toolkit for recognizing and dealing with the chatter. He doesn't mention Sarno, but the physical harm caused by uncontrolled negative thinking is at the top of his list of reasons to do something about it.

Nicole Sachs, LCSW. Her first book from some years ago is The Meaning Of Truth. I believe her second is due to be published soon. Her website thecureforchronicpain.com is full of resources (on the Resources tab!) some paid, some free, and her podcast (scroll way down the Resources page) is my absolute favorite - now at 267 episodes! I believe she also has a YouTube channel but I'm not a video person. The podcast is free and I swear many episodes are like a personal therapy session from Nicole (who quite private practice to make this work public). If you don't get her book, then listen to her first couple of podcasts from 2018 (yes, that's #1 and 2 out of 267 - it might not be easy to navigate back to them - easier with a podcast app than using her browser links).
Also, here is a great intro to her story which I just found the other day - notice how she was given a diagnosis of lifetime disability at age 19.

I actually have a long list of resources on my profile page - feel free to browse them.

I’m actually struggling to believe that me at 34 years old is completely debilitated from this pain that no one seems to really have a proper answer for.

This is good! Many people struggle to believe in the truth about the TMS mechanism in our brains. You're going to do much better from the start if instead you disbelieve that you are this disabled at 34. You aren't!

We're here to support you, so keep us posted and ask questions as needed. Just remember, whenever you post, to think psychologically rather than physically!

~Jan

 

[Fferrari13]

Jan you are an absolute Angel. I’m in shock because yesterday I was honestly on the verge of taking myself to the ER because pain levels were so high, but then I suddenly had an epiphany when thinking about what I had read in the past about Dr Sarno, and my pain levels went right down to the point where they almost vanished.

I will read, do and listen to absolutely everything you have recommended, out of every person I have spoken to regarding my “condition” in the past year - you have made the most sense.
Thank you so much I will keep you updated

 

[Baseball65]

When I first saw your post, I was suspicious of something, but I didn't want to post until I read about it a little more. Now I have.
More and more people on this forum who are TMS prone are having peculiar head/neck/face/tooth pain and it is all part of the trigeminal and occipital nerve networks.

Sarno himself was certain these too could be subject to Ischemia which was his 'mechanism' for creating pain and numbness/discomfort. I still believe the Ischemia model.. I have heard others but it makes the most sense and explains the wide variety of symptoms best...and of course it is part of TMS and should be treated as such.

Back pain is so 90's. RSI was the 00's and Neuropathy was the 20-teens...TMS tends to go after what is believable and unlikely to be thought of as TMS...the more we equate it with an unsolvable physical problem, the better the scary distraction...and as Sarno said, symptoms go in and out of vogue.

Sarno himself had phantom tooth pain and I have as well...wasted a lot of dental visits. When I told my dentist I thought it was TMS he thought I was crazy...but I stopped going back to him and started using my TMS tools and it has gone away completely. I was going through a painful breakup when the symptoms came and in hinsdsight it is so obvious why I needed a distraction.

You might be the first on this forum, but I have a strong feeling there is gonna be more of that...that was great intuition on your part to recognize it for what it is... a distraction

 

[Fferrari13]

When I first saw your post, I was suspicious of something, but I didn't want to post until I read about it a little more. Now I have.
More and more people on this forum who are TMS prone are having peculiar head/neck/face/tooth pain and it is all part of the trigeminal and occipital nerve networks.

Sarno himself was certain these too could be subject to Ischemia which was his 'mechanism' for creating pain and numbness/discomfort. I still believe the Ischemia model.. I have heard others but it makes the most sense and explains the wide variety of symptoms best...and of course it is part of TMS and should be treated as such.

Back pain is so 90's. RSI was the 00's and Neuropathy was the 20-teens...TMS tends to go after what is believable and unlikely to be thought of as TMS...the more we equate it with an unsolvable physical problem, the better the scary distraction...and as Sarno said, symptoms go in and out of vogue.

Sarno himself had phantom tooth pain and I have as well...wasted a lot of dental visits. When I told my dentist I thought it was TMS he thought I was crazy...but I stopped going back to him and started using my TMS tools and it has gone away completely. I was going through a painful breakup when the symptoms came and in hinsdsight it is so obvious why I needed a distraction.

You might be the first on this forum, but I have a strong feeling there is gonna be more of that...that was great intuition on your part to recognize it for what it is... a distraction

I'm honestly in shock, about 5 mins before I saw your post - I was feeling tingling numbness all over my temples, a symptom that comes and goes daily - and I just kept telling myself nope not today, piss off. And now as I’m lying here reading your post it totally faded away. I’ve have suspicions about my symptoms for a while because I can see they disappear at random times such as leaving a Drs office with reassurance that I’m fine, and they come on intensely when I’m alone and left to spiral into negative thoughts of all the terrible things the pain must mean. It is so true - neuropathy is the latest thing that no one really seems to know how to manage, so it’s absolutely terrifying to experience. The more scared I got of my symptoms, the worse they got even though there was no cause or change in treatment plan.

Thank you so much for replying!

 

[Baseball65]

spiral into negative thoughts of all the terrible things the pain must mean.

That is absolutely a symptom of TMS. THAT is the distraction, the way you just described it. I had my Thumb severed at work..it hurt really bad for about two hours...and then it was just background noise. When I get TMS I descend into what you just described so well....I am focused on the pain and afraid of how much worse it might get, if I can stand it, and it occupies my attention 100%....fear, despair,obsession

Reading Sarno's recovery texts about WHY we get TMS, spending mornings making lists of stresses and angers I am aware of and getting cues to the ones I am NOT aware of (yet) from the psychological discussions in the books....

..and perhaps most importantly, I prepare for the symptoms when I am feeling confident ...I prepare the 'recurrent source of irritation' that Sarno says to turn your mind to when you catch yourself focusing on the symptoms.
(Reconditions the brain) I usually pick something obvious and easy to remember. Finances are always a good one, though recent reverses in work or personal relationships is good too...Having it prepared ahead of time means I have a 'bullet in the chamber' so to speak and also is a feeling of empowerment against the hopelessness.
..and then of course , doing IT if they return. We have a natural aversion to thinking about things that bum us out, so it requires mental focus..it is the 'front line; in the battle of TMS

I also talk to the TMS with disdain....like it is an annoying little whiny sibling.
REFUTE THE 'diagnosis' (the one you came with)
RETURN to activity (the ones you've been avoiding)
RECONDITION your brain
all of the 3 R's...some people add 're-educate yourself' but you already know... this is TMS

 

[Fferrari13]

Thank y

That is absolutely a symptom of TMS. THAT is the distraction, the way you just described it. I had my Thumb severed at work..it hurt really bad for about two hours...and then it was just background noise. When I get TMS I descend into what you just described so well....I am focused on the pain and afraid of how much worse it might get, if I can stand it, and it occupies my attention 100%....fear, despair,obsession

Reading Sarno's recovery texts about WHY we get TMS, spending mornings making lists of stresses and angers I am aware of and getting cues to the ones I am NOT aware of (yet) from the psychological discussions in the books....

..and perhaps most importantly, I prepare for the symptoms when I am feeling confident ...I prepare the 'recurrent source of irritation' that Sarno says to turn your mind to when you catch yourself focusing on the symptoms.
(Reconditions the brain) I usually pick something obvious and easy to remember. Finances are always a good one, though recent reverses in work or personal relationships is good too...Having it prepared ahead of time means I have a 'bullet in the chamber' so to speak and also is a feeling of empowerment against the hopelessness.
..and then of course , doing IT if they return. We have a natural aversion to thinking about things that bum us out, so it requires mental focus..it is the 'front line; in the battle of TMS

I also talk to the TMS with disdain....like it is an annoying little whiny sibling.
REFUTE THE 'diagnosis' (the one you came with)
RETURN to activity (the ones you've been avoiding)
RECONDITION your brain
all of the 3 R's...some people add 're-educate yourself' but you already know... this is TMS

that is such a great help…. Thank you
I was feeling better than ever this morning but took a turn this afternoon which was expected. Just knowing it was possible and I saw my symptoms disappear before my eyes at one point - that is what I am going to remind myself of from here on.

I will 100% take on your advice - expect to feel something when your confident, I really need to do this as I can tend to think I’ve dealt with something and it’s gone for good, and then when it returns I fall apart (surely another symptom of TMS )

Seeing you write “return to activity” forced me to go for my first walk in over a week, even though I was terrified - so thank you. So appreciative and I’m so happy to now be part of this community

 

[rand]

I get this every now and then. I've never brought it up to a doc, but I believe its what they call occipital neuralgia, shooting pain up the back of my head. It happens like once or twice a year randomly, lasts for one day then disappears. I've always considered it just another weird TMS manifestation and don't pay it much mind, just like all the other random aches and pains that come and go. As a matter of fact it happened to me a few days ago, I happened to read about how someone experienced this after covid and literally that night it paid me a visit, was gone the next day.

 

[Pat97]

Just came across this thread. I've had on going dizziness for over a year and around 5 weeks ago I was doing sinus and jaw massages as I suspected my dizziness may be coming from my jaw tightness. I was pressing quite firmly in my jaw (infront of ear, where the jaw opens). After a few minutes I felt the vein in the left side of head start to beat rapidly - feeling of cold, dropping sensation in my head that would move around developed.

This went on for a week, I began to feel very I'll and went to a&e, I was kept in over night, where I got bloods and a ct scan (all clear). Funny to think about now I was petrified that I may have to receive a lumbar puncture for a suspected bleed in the brain (quite the tms freak out, probably didn't help).

I then developed burning sensations in my feet and sometimes my hands. When attending my doctor appointment it got even worse and I could feel it in my back and legs also. The symptom's generally have gotten better over time. I've been attending a neck specialist who press on the upper two vertebrae of the spin as these are the only nerves that can affect the head.

As my symptom's come and go it's hard to tell if this has been helping but what I will say is, the physio who is treating me is so sincere that I genuinely think the fact she was listening and believing my pain has helped the most, I remember her saying "anyone saying that your pain isn't real are just mean", having someone who cared really helped.

Fast forward to the last few days, I was worrying and obsessing like I do! But came across a reddit forum mentioning john sarno, I immediately purchased his book and I'm half way through. I've also watched one of his lectures. As I'm reading through it's all hitting home. I'm super particular, put a lot of stress on myself, worry and obsess about everything, especially pain symptom's.

I know have firm belief that I to suffer from tms but was interested to see if anyone suffered from head sensations in relation to the head (forgot to mention I had a really bad back flare up a few months ago that led to me leaving one of my jobs - I now know not to feed into the pain and focus on life stresses etc). That's when I came across this thread and wanted to put my symptom's down incase anyone else is suffering from something similar and panicking because let me tell you. At times I was fearing I was going to die.

I just wanted to say I appreciate all the comments in this thread, thank you to all of you. It really helps new comers feel relaxed regarding their "pains". Hope you are all doing well.

Sorry for the essay