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Discussion in 'Support Subforum' started by johnny d, Dec 29, 2019.

  1. johnny d

    johnny d New Member

    Hey, I am 19 years old and I have a non-stop headache in the left crown of my head that started at the end of March this year. At around 2 weeks since the headache started I searched online about it and later I found a disorder called NDPH (new daily persistent headache) which sounded exactly like my headache but then I realized that there is no cure for this headache and a lot of people never get rid of. I immediately got scared by the idea that this headache will not go away, after a month of this headache I went to the ER and they did a ct scan which found sinusitis and the doctors told me it explains the non-stop headache which made me really happy, but the headache remained after the sinusitis was treated, MRI came back clear, and every physician and neurologist told me that I'm depressed because I need to join the army soon and that's the reason for this headache, one physician even accused me of acting like I have a headache so I won't have to join the army.
    I'm scared, I want this headache to stop and I'm constantly afraid about getting a disease.
    I found this website and about tms a few months ago when I read a story about someone who also had a non-stop headache but got cured by a TMS practitioner, so I have a question do u think its TMS?

    Also might be worth mentioning that the headache started the day that I had a fight with someone (which was normal) and the headache started hours later at about 4 am when I got scared about some disease that I thought I have also ever since that headache started I started to experience more pain symptoms which doesn't bother me as much as the headache.

    List of symptoms:
    24/7 Non-stop headache, that got much worse for 2 weeks after I focused on the headache "evolved" to the back of the head, it felt like it was a tree growing roots and I felt a lot of lines that felt electric and burning like occipital neuralgia that I read about. During that time new symptoms appeared and older symptoms changed like my knee pain that also became leg pain and heel pain

    Pain around the left eye, also non stop, started after I searched the symptoms of sinusitis while I got treated for it

    leg pain

    wrist pain at both hands (carpal tunnel syndrome?) which I had before the headache but it was only at the right hand and I only felt it during exams at school after writing for a long time or when I played video games, something that I remembered though is that this year the wrist pain started during exams and it got worse a week or two before the headache started.

    heel pain

    neck pain which stopped

    non-stop teeth pain also at the left side, which weird enough happened a week after I read about atypical TN and people that have non stop teeth pain.

    Low back pain after I lifted some heavy stuff at work this month

    Please help me, I don't want to live with this headache
    Thank you so much for reading.
  2. TG957

    TG957 Beloved Grand Eagle

    Considering that you have a variety of symptoms, that MRI did not show any problems in your brain, and that you have reasons to be extremely anxious about military service, it is very likely to be TMS. There are plenty of resources on this forum and site in general, but I suggest starting with searches on anxiety, which seems to be a root cause. I highly recommend Claire Weekes audio, it saved me and helped to recover from severe neuropathic pain and many other symptoms. Good luck!
  3. johnny d

    johnny d New Member

    Thank you!
    TG957 likes this.
  4. embodydami

    embodydami New Member

    I wish I would've seen this sooner... I hope you are doing better. This is exactly a type of TMS I suffer from. Your case sounds like textbook TMS... which is actually good news!! It means you have control and get your headache to stop. I used to join all the different types of headache support groups on facebook, and the people that are convinced their headache is physical are stuck in a loop of trying different medications and doctors that never work :/ Im so glad you found this page. I have had TMS manifest as back pain, migraines, horrible tooth/jaw pain, carpal tunnel, and the headache you're describing....the headache is by FAR the worst. even worse than a migraine and thats a statement.

    What really helped me was focusing on my fear, and trying not to give a shit. Convincing myself I was safe, etc. When I would wake up and feel the head pain, I would say out loud "It doesn't matter if the pain comes or not, because I am going to have a great day either way" and 9/10 the pain would go away....the fear and the pressure are what triggers the pain and lets it continue.

    This has led me into a path of becoming a certified hypnotherapist, NLP practitioner, EFT practitioner, and more. To help keep myself on track and to keep other people who struggle with this mind-body syndrome. I have been to the darkest depths of myself with this pain and I just want to help others break out of it. I would love to hear an update on your headache and offer my help to you if you are still struggling
    palaab and jimmylaw9 like this.
  5. johnny d

    johnny d New Member

    Thank you so much for your reply it's encouraging to hear that you had a never-ending headache too and made it stop, I only seen 1 person on this forum with an intractable headache, which made me a bit discouraged and afraid that this isn't TMS, and that scares me, the thought of never getting rid of this headache. In the first months since it started, I kept looking at posts from support groups all the time, I haven't done a thing all day other than reading people's posts over and over again, and honestly, it scared me, like you said people posting huge lists of different medications that at best make their headache a bit better and going from a doctor to a doctor, and the headache just not stopping even a second since it started.
    I stopped going to those forums months ago though since it only made me nervous.

    I started reading "The Divided Mind" by Dr. Sarno on Kindle but I'm reading it slow........I started reading in October and only made it to 38% of the book as of now, the headache makes it hard for me to focus and I take long breaks from reading, even weeks, Idk if it is a lack of motivation, or just me being lazy, but it feels like I'm getting nowhere
  6. jimmylaw9

    jimmylaw9 Peer Supporter

    Hi had a tension headache for about 6 months solid, cramping migraine unrelenting pain. I used syndol at its worst periods. I never in my life had them before. Persistent same side of head and totally debilitating. Fear making it worse. Coincided with very stressful time.
    It has gone. At the time I said if only this symptom would go I wouldn’t care less about the others as this was horrendous. Well it has went gradually subsided slowly and now gone. I stopped fearing it and laid into it. Accepted it was stress induced was nice to myself when I had it and cheered it on and it’s gone. Yours will go too.
    TG957 likes this.
  7. Latitudes9

    Latitudes9 New Member

    Hi, I have a similar story! I've been dealing with a constant burning pain on top of my head for the past 12 months, and I've been told it's most likely NDPH as well, which scares me. I've tried a ton of medications, acupuncture, Botox, nerve blocks, ketamine infusions, etc. and absolutely NOTHING has helped (except alcohol). I'm at the point of looking into nerve stimulator surgery. I learned about TMS and have been trying to apply those techniques for the past 6 months or so, with no success.

    I have some doubts that it is TMS because:
    1. The pain is constant 24/7. It is not affected by stress or emotions. No matter what I do or don't do, or how I think, the pain is always there.
    2. I don't have a history of other minor ailments or emotional issues like other TMSers.
    3. My neurologist says he thinks it is caused by irritated nerves in my scalp, but there is no way to prove/disprove this hypothesis, so I can't rule it out.

    But on the other hand, it might be TMS because:
    1. The pain does seem to randomly move to different areas around my head that don't match a nerve distribution.
    2. I have a personality type associated with TMS.
    3. All my MRIs/scans have come back normal.

    I understand that trying so hard to "solve" the pain and being scared of it has probably contributed to its persistence, but even when I try meditation or somatic tracking, where I don't fear the pain, I don't notice a difference. I know the sensation isn't dangerous, but it's still unpleasant. I'm not scared of it, but I don't like the feeling. I guess I'm just confused because I want to believe it's TMS, but there are some things that don't fit and TMS methods haven't worked, so I don't know what to do.
  8. TG957

    TG957 Beloved Grand Eagle

    @Latitudes9 , let me go over your points one by one.

    1. Doubts in TMS is where we all begin.
    2. You don't have to have a prior history of ailments to get the chronic pain developed. Any history of ailments has to have a beginning, correct? As for emotional issues - you don't have to have emotional issues in the past, the trigger could be recent and not immediately noticeable.
    3. You just said it: "there is no way to prove/disprove this hypothesis". Most of people by certain age have deformities in their spines, legs, arms etc , yet, not everybody has chronic pain in those areas. Multiple studies confirmed that statistically naturally occuring deformities in the bones do not have impact on chronic pain conditions. The same applies to the nerves in your scalp. Have you had any specific injuries that may have caused such irritation? Neurologists think in a straightforward way: if nerve radiates pain, it must be irritated. I had a neurologist telling me that my nerves were damaged and he had EMG to prove his hypothesis. Guess what, I proved him wrong, and my neuropathic pain is long gone.

    Also, a very pragmatic suggestion: your neurologist does not have any treatment for you to try, other than a pain killer, correct? Why don't you try what TMS method has to offer? It does not cost much money, it does not do you any harm, and it worked for bunch of other people.
  9. Latitudes9

    Latitudes9 New Member

    Thanks so much for your reply. I guess that's the frustration; I feel like I HAVE been trying TMS methods for over 6 months and they haven't worked, not even a little bit. I've even worked with a TMS therapist from the Pain Psychology Center, but to no avail.
  10. TG957

    TG957 Beloved Grand Eagle

    You have to be patient. It took me almost 2 years and much more effort than I ever expected it would take. Some people try it for a longer time before they figure out what exactly needs to be tweaked in their brain. It is a trial and error process. Read success stories, it is very important to build your confidence. Incidentally, this is what was posted this morning by someone who was able to succeed:

    https://www.tmswiki.org/forum/threads/open-letter-to-the-people-not-getting-better-or-to-those-who-want-it-fast.23177/ (Open Letter to the people NOT getting better, or to those who want it FAST)
  11. Gojab

    Gojab Peer Supporter

    I would say yes, TMS. Here's why. I came to this site with horrible back/hip pain for two years. I started my therapy using Sarno, this site, etc two months ago. Pain is gone. I am the happiest guy in the world. Walking 5 miles a day, exercising, etc. Couldn't even get out of the house 2 months ago.

    However, just in the past week I am noticing exactly the things you are mentioning. Headache, jaw, tooth, and neck pain. ALL on the left side.

    Here is how I know that is TMS and I'm not concerned.

    1) My dentist told me never to eat apples. I ate one about 1 month ago and the pain started.
    2) My wife is having her teeth straightened because the same dentist is trying to correct her bit to avoid TMJ. Puts it back in my head.
    3) I know that wearing a mask has suddenly become a trigger to the pain, even tho I wore masks from april to now without such pain.

    I have never had these symptoms/sensations before, so why now? I know that the brain is desperately trying to find a place to direct my attention.

    So, I am fully confident that this is TMS. I am not concerned about it. It can come and go as it wishes, but I will continue to focus on my emotional health.

    Hope that helps.
    TG957 likes this.
  12. Latitudes9

    Latitudes9 New Member

    I have some doubts that it is TMS because:
    1. The pain is constant 24/7. It is not affected by stress or emotions. No matter what I do or don't do, or how I think, the pain is always there.
    2. I don't have a history of other minor ailments or emotional issues like other TMSers.
    3. My neurologist says he thinks it is caused by irritated nerves in my scalp, but there is no way to prove/disprove this hypothesis, so I can't rule it out.

    @TG957 you still didn't reply to #1. If the pain isn't affected by emotions or stress, how can it be TMS?
  13. TG957

    TG957 Beloved Grand Eagle

    I can't address #3 as I am not a neurologist. You may want to check with Dr. Roger Gietzen who is a neurologist I consulted with and who was spot on identifying my condition as TMS.
    Now on to #1 and #2.
    My CRPS pain was a constant, never ending neuropathic pain 24/7. BTW, CRPS pain is measured on the 50-point McGill scale, childbirth and amputation pain without anesthesia are at 40, CRPS at 40+. But this is just me. Other people also had TMS as a constant pain. Ask Steve Ozanich, who was in the wheelchair, who threw Sarno's book into the wall when he was first time given it. He has been pain-free for 10+ years now. Just the fact that whatever you do is not helping it does not mean that what you do is the right thing to do. It took me a while to figure out how to get to the roots of my pain. The roots of my pain was that I did not feel any emotions. I became so good at suppressing them that they no longer felt as my problem. It took me at least a year to start feeling them again. Check out my posts on this forum from 2017 - I was trying to figure out how to get a hold of my emotions. As for stress - the only reaction we have to stress is emotions. You can't feel emotions - you can't really feel stress on the emotional level. Just because stress does not take your pain higher, it still does not prove that it does not impact you. Healing is an incredibly hard work. I am not saying your are not trying, I am saying that maybe you have not found the right path.
    Last edited: Nov 10, 2020
  14. rachel454

    rachel454 Newcomer

    Hey, has your headache cleared up? I’m having a similar issue.

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