Join Date: Jul 2009
Location: Eastern United States
Trigeminal Neuralgia, Cluster Headaches, or something else?
I believe I may have been misdiagnosed with clusters. Atypical symptoms include: duration (longer than 12 hours), frequency (4 over 2 months' time), time (diurnal, not nocturnal), behavior (very still, not the thrashing and hitting characteristic of CH sufferers), and regularity (not predictable). Here goes:
Possible Initial Injury
• Age six
• Fell from monkey bars while inverted, landing on neck, and subsequently, back
• Immediate effects were dazing and shortness of breath (“wind knocked out of me”)
• By the end of the school day, right shoulder was raised to ear level, due to muscle spasm
• Principal, who was chiropractor, painfully adjusted neck and recovery was made; principal stated “a couple of cervical discs were out of alignment.”
Re-emergence of Pain
• Approximately age 13 to age 19
• Neck was in awkward position while being buried in sand at the beach
• Symptoms were: sudden, sharp pain in right hemisphere of head, particularly on the top, right side of the skull, but also shooting up from its base and the neck; as the muscle relaxed, there was always a production of 1-3 tears in right eye ONLY—I call these “brain freezes”
• Pain was quite brief, perhaps only ten or twenty seconds, and there were no lingering effects
• Occasional brain freezes like this were the norm for the next 5-6 years, occurring at irregular intervals, as infrequent as once per week but sometimes much more often
• Possible triggers were awkward posture/movement, muscle strain (neck), chewing gum (NOT food), barometric pressure (inducing a tension headache that could/can “flare up”) and stress, specifically moments of high stress of the level that causes an adrenaline dump, the spasm occurring immediately after the dump
• Notable exception to brevity characteristic: 17-day migraine that affected both hemispheres of head, and that was treated with chiropractic manipulation and subsequently, a spinal tap. Seen by Neuro in CHKD ED & diagnosed as “atypical migraine.” During evaluation, also received EEG & CT of head, both of which were negative. (Is this exception a possible red herring?)
Modulation of Pain
• Approximately age 19 to present
• Unsure of initial trigger/injury
• Modulation initially consisted of intensification of pain during brain freezes and the production of a knot in the center of my right shoulder, which has never really quite resolved itself.
• However, after adjustment by another chiropractor (I really should learn my lesson, shouldn’t I?) in an effort to relieve brain freezes, pain continued to intensify, and the spasms sometimes lasted longer and appeared more frequently. This is not to say that the original type of spasm no longer occurred, however.
• Triggers remained same as above.
• Intensity and frequency of “normal” tension headaches also increased, to the extent that they appeared to induce spasm activity in neck muscle, although the latter may cause the former
• This has been the case for approximately the last two years, and the only effective treatments have been a cherry pit pack and Excedrin. I usually take two of the latter in cases of moderate to high-moderate pain. It should also be noted that I sleep with a special pillow and only on my right side. Sleeping on my left side immediately results in my awakening with brain freezes.
• During this same time period, and up until approximately six months ago, I could adjust my neck after a spasm by forcing my head toward the left shoulder. This often produced multiple pops, as many as five or six at a time.
• This winter, however, I evidently injured my neck and shoulder further by doing this. After a particularly severe bout of spasmodic pain, while in the shower I attempted to self-adjust, apparently straining the offending muscle. For the next few days, the muscle was stiff and sore, and my right shoulder was drawn upward.
• This kind of drawing has re-emerged three or four times since, sometimes without apparent cause, but perhaps linked to physical exertion.
• Also, most frightening of all, I have seen an occasional exponential increase in the intensity and duration of these spasms, to the extent that I distinguish these occurrences from brain freezes, which I reserve for the more brief variety. Within the last month or so, on three occasions [EDIT: now, 4 occasions, including episode of July 28, which resulted in an ED visit] I have experienced agonizing pain (10 out of 10) across the right hemisphere of my head, lasting approximately 6 hours, 8 hours, and 10 hours respectively. The last two episodes were almost certainly induced by my sleeping posture: in both cases I fell asleep on the couch the night before. The pain has a particular spasmodic quality to it in that I am in constant pain, but the severity plateaus, increases to the level that I sometimes scream, and then gradually descends back to a more manageable level until the next spasm. These episodes are also characterized by a drawing of the left shoulder up toward the ear, although not to the extent of the drawing mentioned in the above neck injury. Excedrin has proven decreasingly effective against this level of pain. I also attempted to treat each of these headaches with a muscle relaxer, heat, and Aspercreme, none of which had any perceptible effect. In the final occurrence, which took place July 19, the only effective medication was a Darvocet, which finally seemed to relieve the majority of the pain. In its wake, however, I have had lingering spasms of varying intensity, along with muscle tightness in my shoulder. On each occasion, I have only been able to alleviate a small portion of the pain by kneeling, placing my head in my hands, and supporting my weight with knees and elbows. I can feel the muscles in my neck and shoulder contracting as the pain level crescendos, and I even noticed the muscles across my forehead contracting during on of the spasms.
• It should be noted that none of the above symptoms are accompanied by nausea, light/noise sensitivity, or any of the other “classic” migraine symptoms of which I am aware. It is my opinion that my problems are muscular or neuro-muscular in origin, particularly since a recent X-ray of my back showed no spinal issues, and since I do not fit the migraine profile. I have been known to be wrong, however.
• I cannot exaggerate the severity of this pain. It is unbearable, intolerable, and after this last episode I live in fear that it will come back. I cannot work, cannot recreate, and in short cannot enjoy my life. Even typing this summary excites miniature bursts of pain in my head. Being a diabetic, depending on medication to resolve the issue is not an option; neither is spinal surgery, at least for me. Ideally, I would like to pursue in this order: a therapeutic option that emphasizes conditioning of the offending muscle(s) in my shoulder and neck, trigger point injections, and botulism injections. With all that being said, I am definitely not a doctor, so I would appreciate all the help and information I can get.