This was originally published on WWW.IHateHeadaches.org in response to a question from a patient suffering for over 10 months with a severe problem destroying his quality of life.
Paul’s Question for Dr Shapira
Tell us about your headaches…: I remember my mother taking me to the doctors when I was a child for random tension headaches. I’ve always been an over-thinker, which can cause anxiety and stress, potentially leading to headaches. Throughout my childhood and adult life, I had headaches hear and there (more frequent than the average person, I’d say), but nothing that a an OTC and a little time couldn’t handle. It was never chronic or debilitating. All that changed on October 25th, 2014…
On that day, after a stressful year and a half, I was knocked down by the worst headache/migraine I’d ever had. I didn’t know what it was, but I feared for my life. It was as though something was going to explode in my head at any moment.
In the months that followed, it never went away, and I was plagued with off neurological symptoms (felt like someone was pouring cold water on my head at times, odd sensations in random parts of my body, my eyes would hurt at night) but the most difficult thing was the pressure. Every day it felt like my head was going to pop. I was living as though any second I could die.
Though the some of the strange symptoms have subsided, the pressure and fatigue remain. The emanate from the base of my skull where my spine meets my skull. That seems to be the centerpiece, but it moves to the sides of my head just above the ears, and sometimes the top. Different positions rarely help.
I’ve seen two neurologists. One said it was atypical migraines. She’s wrong, though they can rarely turn into migraines, that’s not what they are. She started me on magnesium, melatonin and riboflavin as well as topamax to no avail. I moved on to another neurologist who’s DX was Chronic Daily Headaches, and does nothing but through pills at me. I’ll admit that the only thing that relieves the pressure and makes me feel somewhat normal is Soma, but it’s short-lived, tolerance builds fast, and I feel we are not getting to the root of the problem. Klonopin also seems to help, which makes me think it’s a muscle tension, possible TMJ issue.
I had a decaying tooth, so I even saw the dentist, who wound up doing 2 root canals and I went through a round of amoxicillin just in case there was an infection. I can say my teeth are now the best is town (after a whole summer of treatments), but dental stuff doesn’t seem to be the issue. She just gave me a referral to be evaluated for TMJ.
I also saw my optometrist, he said everything looked fine; however, my vision had improved, and I had been wearing contact lenses that were too strong for awhile. He said this isn’t the cause of my headaches, but it certainly isn’t helping.
I am now seeing a Chiropractor 3x/week who says I have an Atlas Sublaxation, and a bone in my neck/base of skull is out of place and could be pinching nerves. Over time, he plans to put that bone back in place. I’m skeptical.
I have had a CT and MRI of the brain, all unremarkable. Last week I went for a Lumbar Puncture to rule out other things. I go over the results with my neurologist on Tuesday.
I’m growing weary, and this is all making me depressed. The side-effects of the meds also make me depressed. I’d love some input.
I have a past history of substance abuse, and have kindled with benzo’s and other GABAergics. In fact, right before this happened, I was taking a substance called phenibut for my anxiety, and coming off of a high dose of gabapentin (which i was put on after coming off of Klonopin). My abuse days are over, but I wonder if it plays a role.
I am currently on the following medications:
Vyvanse (70mg/daily) – a mild amphetamine for ADD and unresponsive major depression
Klonopin .5mg 3-4x/daily PRN
Baclofen 10mg 4x/daily PRN
Soma 350mg 4x/daily PRN
I also take melatonin, magnesium, a B-complex, Fish oil/omega-3’s and a multivitamin.
Any help, direction, or input would be greatly appreciated, as this leads to such a poor quality of life that living seems useless at this point and I think about death far too often.
Tell us about your headaches…: I remember my mother taking me to the doctors when I was a child for random tension headaches. I’ve always been an over-thinker, which can cause anxiety and stress, potentially leading to headaches. Throughout my childhood and adult life, I had headaches hear and there (more frequent than the average person, I’d say), but nothing that a an OTC and a little time couldn’t handle. It was never chronic or debilitating. All that changed on October 25th, 2014…
On that day, after a stressful year and a half, I was knocked down by the worst headache/migraine I’d ever had. I didn’t know what it was, but I feared for my life. It was as though something was going to explode in my head at any moment.
In the months that followed, it never went away, and I was plagued with off neurological symptoms (felt like someone was pouring cold water on my head at times, odd sensations in random parts of my body, my eyes would hurt at night) but the most difficult thing was the pressure. Every day it felt like my head was going to pop. I was living as though any second I could die.
Though the some of the strange symptoms have subsided, the pressure and fatigue remain. The emanate from the base of my skull where my spine meets my skull. That seems to be the centerpiece, but it moves to the sides of my head just above the ears, and sometimes the top. Different positions rarely help.
I’ve seen two neurologists. One said it was atypical migraines. She’s wrong, though they can rarely turn into migraines, that’s not what they are. She started me on magnesium, melatonin and riboflavin as well as topamax to no avail. I moved on to another neurologist who’s DX was Chronic Daily Headaches, and does nothing but through pills at me. I’ll admit that the only thing that relieves the pressure and makes me feel somewhat normal is Soma, but it’s short-lived, tolerance builds fast, and I feel we are not getting to the root of the problem. Klonopin also seems to help, which makes me think it’s a muscle tension, possible TMJ issue.
I had a decaying tooth, so I even saw the dentist, who wound up doing 2 root canals and I went through a round of amoxicillin just in case there was an infection. I can say my teeth are now the best is town (after a whole summer of treatments), but dental stuff doesn’t seem to be the issue. She just gave me a referral to be evaluated for TMJ.
I also saw my optometrist, he said everything looked fine; however, my vision had improved, and I had been wearing contact lenses that were too strong for awhile. He said this isn’t the cause of my headaches, but it certainly isn’t helping.
I am now seeing a Chiropractor 3x/week who says I have an Atlas Sublaxation, and a bone in my neck/base of skull is out of place and could be pinching nerves. Over time, he plans to put that bone back in place. I’m skeptical.
I have had a CT and MRI of the brain, all unremarkable. Last week I went for a Lumbar Puncture to rule out other things. I go over the results with my neurologist on Tuesday.
I’m growing weary, and this is all making me depressed. The side-effects of the meds also make me depressed. I’d love some input.
I have a past history of substance abuse, and have kindled with benzo’s and other GABAergics. In fact, right before this happened, I was taking a substance called phenibut for my anxiety, and coming off of a high dose of gabapentin (which i was put on after coming off of Klonopin). My abuse days are over, but I wonder if it plays a role.
I am currently on the following medications:
Vyvanse (70mg/daily) – a mild amphetamine for ADD and unresponsive major depression
Klonopin .5mg 3-4x/daily PRN
Baclofen 10mg 4x/daily PRN
Soma 350mg 4x/daily PRN
I also take melatonin, magnesium, a B-complex, Fish oil/omega-3’s and a multivitamin.
Any help, direction, or input would be greatly appreciated, as this leads to such a poor quality of life that living seems useless at this point and I think about death far too often.
Dr Shapira’s Response:
DEAR PAUL,
You have been through a lot and even though non-diagnostic MRI and CT scans can be disappointing they are actually very good news.
Most chronic pain is from causes that are not visibile in those tests. The number one source of pain is MPD or Myofascial Pain and Dysfunction which is always a major portion of all Temporomandibular Dysfunctions.
These conditions were well described by Dr Janet Travell in her landmark text
“Myofascial Pain and Dysfuntion: A Trigger Point Manual”
You did not mention having SPG blocks which may help butare not the ultimate answer. Atlas /Axis problems with the first two vertebrae can give a host of strange symptoms.
The SpenoPalatine Ganglion is the largest parasympathetic ganglia of the head and neck and is implicated in a wide variety of wierd and inexplicable cases of chronic pain and dysfunction. It was made famous in the best selling book “Miracles on Park Avenue” which is a worthwhile read.
The Trigeminal Nerve is responsible for over 50% of input to the Central Nervous System after amplification in Reticular activating System. It is an oversimplification to call it a TMJ problem but more accurate to call it a musculoskeletal/ trigemino-vacular and trigeminal nervous system dilemma.
I frequently hear stories that are similar yet different. I assume the lumbar puncture will be negative but it is good to rule out all organic problems.
I am located in the Chicago ara but I frequently see long distance patients.
Visit my website www.ThinkBetterLife.com to learn more.
I will put some links to patients testimonials for you. Each and every case is unique and different, but you have already ruled out all the worst alternative causes and probably are dealing with a functional issue.
Ira L Shapira DDS, D,ABDSM, D,AAPM, FICCMO
Chair, Alliance of TMD Organizations
