Desperate - Chronic, 24/7 Headache
Hoping for any advice at all regarding my unusual chronic headache. I have had a chronic headache for 4 months. Its characteristics:
-Came on gradually over the course of a week
- Unilateral (L side), primarily in temple, but shooting through left eye, sinus and teeth
- Constant. The pain has not gone away or moved for even a few minutes within 4 months
- Spikes. Always at a level 3-4/10, with intermittent periods of pain at levels 7-8. Spikes of pain last a few hours, and seem concentrated within a few days. I.e., pain will be at a 4 for a week, and then will be up to an 8 for several days in a row.
- Not associated with nausea, light/sound sensitivity, auras, or other migraine symptoms
My medical history: 27-yr old female with overall good health but some emotional issues. Currently on Wellbutrin for depression, Lamictal for mood swings, Xanax as needed for panic attacks, and birth control (Yaz). Mental health well-managed with therapy and drugs. History of B12 deficiency that has been resolved. No history of headache.
The pain has been completely unresponsive to all analgesics. No medicine has caused even slight relief. Have been given:
-NSAIDS: aspirin, ibuprofen, naproxen, indomethacin, nabumetone, diclofenac (Cambia)
-Triptans: sumatriptan, relpax
-Barbiturates: Fiorinal
-Muscle relaxants: cyclobenzaprine (Flexeril)
-Acupuncture and pain-relief meditation exercises
As no medicine has broken the headache cycle, preventative headache medicines have been limited. Took Topirimate (Topamax) for one month, discontinued due to lack of response and side effects (breakthrough bleeding due to reaction with birth control pill). Last night I began taking Nortriptyline.
Diagnostic tests / conditions that have been ruled out:
- MRI with and without contrast (normal)
- MRV without contrast (normal - no thrombosis)
- Endoscopy of sinuses (normal)
- Tooth examination, dental X-rays (normal)
- Chiropractic exam (normal)
- Tooth grinding: my teeth showed signs of mild grinding, I have been given a night-guard for 3 months, with no relief; not TMJ
- Nerve function tests / electromyography (normal)
No patterns have been identified to cause headache:
- Stress or anxiety (headache still killer when relaxed, including with Xanax)
- Foods (no food, alcohol identified to trigger headache)
- Hormones/specific times of month (no change)
- Weekdays vs weekends (no change)
- Location (have travelled with headache for 2 weeks at time, with no change, so likely not environmental)
- Medicine (was taken off birth control for a few weeks with no change; ditto with Wellbutrin; have not been taken off Lamictal as it is not known to cause headache)
- Medicine withdrawal (as no analgesic has been taken regularly)
- Major life change (nothing happened in August to trigger headache)
- Sleep patterns (headache is the same with both more and less sleep)
- Exercise (no change w and w/o exercise)
- Time of day (headache present upon waking, throughout day, in evenings, at bedtime, when waking in middle of night)
Therapist and psychiatrist do not suspect psychosomatic pain, due to persistence, lack of emotional triggers, and lack of response to any treatment (even placebo effect).
Access to excellent healthcare, currently seeing excellent neurologist biweekly. Have sought 2nd opinions. She was optimistic that this was Hemicrania Continua, but the headache was unresponsive to indomethican (50 and 100mg).
Right now my only diagnosis is "persistent headache." Doctor's current proposed next steps:
- Steroids (prednisone for a week in hopes of breaking headache cycle)
-Continued diagnostics (MRA of brain to look for possible aneurysm
- Elimination diet (i.e. Whole30-type diet cutting wheat, processed foods, dairy, etc and then slowly adding them back)
Please - do you have any other ideas about possible medicines, triggers, diagnoses, tests? I am missing work and social obligations due to this headache and doctor appointments. It's really harming my quality of life.
Hi rebeck,
I can totally empathize with what you are going through. I have had a 24/7 headache for almost two years, and have tried most of what you noted on your list of treatments/tests. My headache is migraine, which is sounds like you may or may not be experiencing, so I'm not sure how applicable some of these treatments will be for you. Although it sounds like you are at the point where almost anything is worth a shot. While nothing has fully broken my headache, I have gotten sustained pain decreases from a few things:
Botox- this took a while to kick in, and did make me worse for a few weeks at a time for the first several rounds of injections.
Namenda (memantine)- this is a weird preventative. Migraine is an off-label use of this dementia med. but I do think this is helping to keep my pain levels lower. I take 5mg twice a day.
Dihydroergotamine (dhe)- I've used this a few different ways. I did 3 days of infusions as an inpatient, which definitely reduced my pain level, after which my neuro added the botox and memantine and we've been able to keep the pain lower pretty successfully since then. I have also done a few days of outpatient infusions to handle sustained pain spikes, and I am now able to inject dhe at home when I have a bad pain increase. I do sometimes use the triptans, but I have had better luck with the dhe.
Cefaly device- this is a nerve stimulation device that is available by prescription. I use it once a day at night as a preventative (tho the concept of preventing a headache I already have is a little ridiculous to me), and sometimes I use it in an effort to reduce an increase in pain. Sometimes it helps and sometimes it doesn't, but they offer a 60-day money back guarantee so it could be worth a try.
Good luck, and keep us posted! I hope you find something that helps.
