I finally decided I needed to post an introduction to this forum (I had registered a LONG time ago) in hopes of maybe finding some help that the doctors are not finding for me. I have tried to read some here but it is difficult for me to focus and read. I will try to be as brief as I can but I have a long and complex story with headaches.
I have experienced migraines since 1985 (was 19 at the time). They occurred about once a year and did not become debilitating until starting around 2002. At that time they started increasing in frequency and intensity peaking in 2004 with monthly occurrences and an intensity that would result in me missing work for several days. Occurrences are typical of a migraine with aura. I have yet to identify any prodome phase symptoms. Onset is with a typical aura phase with scintillating scotoma/blind spots that would start 30 minutes prior to the pain phase. The pain phase would last on average 1-3 hours though severe “attacks” could last many hours longer. I also experience the typical postdrome phase that would last a day or so. The one atypical thing about my migraines is the kind of PAIN; it is not the typical throbbing but rather a sharp constant knife-like pain always behind the left eye and a pressure-like pain radiating into the temple. Also, with the increased intensity/occurrence rate, the headaches switched from coming on during the day to my waking up with them in progress.
An important note is that I suffer from PTSD from having been in the Pentagon on 9/11. I also was exposed to the smoke from the fires in the building for several days as air handling units in the facility I worked in were pumping the smoke into the facility. Thus my increase of frequency and intensity could be psychologically related and/or related to exposure to the smoke for several days to who-knows-what-all was burning.
At the end of 2010, I experienced an “event” that has now been determined to have been my first cluster headache. At admission to the ER, doctors initially thought I was having a stroke however it was ruled out with medical tests and due to my migraine history, what I was experiencing was written off as a severe migraine and I was doped up and sent home.
Since that time, the beast has visited me on average about once or twice a week nonstop for the past three years. My cluster headaches follow the same onset pattern as my migraines however, the “aura phase” is VERY different. I do not have a visual aura but I have symptoms of something happening to me that precede the pain phase. I typically have what looks like a complex partial seizure. I have been tested for epilepsy several times and am negative on the seizure events being epileptic in nature (during attempts to trigger seizures during epilepsy testing they did manage to trigger headaches). Typically I have blackout periods during this pre-pain phase with occasional memory loss that can extend back hours and a few times even days. The few times I do have some memory of it, I can only remember that I just didn’t feel “right” and think that it was the feeling of the onset of whatever is going on with cluster headaches starting to happen in my brain. I can’t even describe exactly what my “not feeling right” means other than I physically, mentally and emotionally feel as though something is going wrong with my body. I typically exhibit intense thirst as during this phase I will be trying to get something to drink or will try to communicate to my roommate that I am thirsty. I have passed out several times during this phase as well. I exhibit typical Horner’s Syndrome (drooping eyelid and constricted pupil) and even to the point of having some facial muscle slacking (one of the specific physical symptoms that started the ER doctors to check me for a stroke). Even though I may appear conscious and partially responsive during this time, I am unable to cognitively process that what I am experiencing is a warning that a headache is starting. Thus I have to rely on my roommate to recognize a headache is about to start and get me on my oxygen.
The oxygen has been very successful at aborting the headaches completely provided I get it during this phase or within a few minutes of the pain phase starting. Too long into the pain phase, the oxygen does not help in either reducing the pain or aborting the headache entirely.
The pain phase of the cluster headache far surpasses the kind of pain I experience with the migraines though it is of same kind of pain; a sharp constant knife-like pain always behind the left eye and radiating into the temple. As with the migraines, it will typically last 1-3 hours but during severe attacks with last much longer and usually send me to the hospital once it surpasses my ability to tolerate it. And like the migraines, I have a similar postdrome phase but is much more intense and debilitating. I have slept up to three days continuously after a headache. And it really isn’t sleep as much as it is an inability to stay conscious as I do not feel sleepy during this time; I just can’t stay conscious. Even if I manage to abort a headache with the oxygen, I will still enter this postdrome phase and sleep though it won’t be as severe as normal.
And like the migraines, most occurrences happen with me awaking with the headache in progress and to date oxygen has NOT helped my headaches in this situation. The oxygen has ONLY been effective when the headaches come on while I am conscious. The one atypical thing with my cluster headaches is I never experienced them in the stereotypical episodes of occurring at the same time of the day/night or in clusters. They seem to have just started out as chronic. I have had them once to twice a week for three years and there isn’t any specific time they occur though they mostly occur while I am sleeping. But due to the fact that the headaches have COMPLETELY ruined any normal sleep schedule, I don’t sleep on a normal schedule and occasionally end up sleeping during the day and being awake at night. Thus my “awaking” with it in progress could be during the AM or the PM. It just depends on when I was sleeping. Thus, no real episode “schedule” that I have been able to determine.
Prior to my cluster headaches starting, I had been tested for and diagnosed with multiple sleep disorders. I have had multiple over-night sleep studies and have been diagnosed with sleep apnea, delayed sleep phase syndrome, restless leg syndrome and periodic limb movement disorder. I am wondering if because of having delayed sleep phase syndrome (screwed up circadian clock) if that could be a contributing reason why I have not had episodic cluster headaches since it is theorized that cluster headaches could be tied to one’s circadian rhythms.
As well, since that initial cluster headache in 2010, I have experienced a continuous headache that meets the criteria for hemicrania continua except I did NOT respond to indomethacin. However, with my research, there have been cases of HC that have not responded to indomethacin. Again, like my migraines and CHs, it is the same kind of pain; a sharp constant knife-like pain always behind the left eye and a pressure-like pain radiating into the temple. The pain has been unremitting since it started, has not side shifted and will go up and down in the intensity of pain sometimes being no more than a nagging “I’m still here” pain to being as severe as a migraine. I also experience the short, "jabbing" headaches superimposed over the persistent daily headache and they typically last less than a minute but can sometimes take me to my knees.
I have been on SO many medication trials that I don’t ever want to see another pill (various vasoconstrictors, triptans, beta blockers, anti-convulsants, antidepressants, etc) (about to start Celecoxib). I have also tried the injectable versions for the triptans. Of the meds I have tried either they have had no sufficient effect or the side effects were too severe for me to tolerate the medications. The only med I have taken that has helped a little is topiramate and it reduced the sharp knife-like pain in the daily hemicrania continua headache but the pressure-like pain that radiates into the temple is still there.
Since that first event in 2010, I have been declared disabled due to my headaches. Outside of the headaches themselves, I have also lived with the following symptoms daily:
1. Nausea
2. Light Sensitivity
3. Ringing in my ears that has not gone away
4. Bitter taste in my mouth (This was continuous for the first few months after the initial onset in 2010. This symptom now only appears around more severe cluster headaches and/or when the continual headache ramps up really high)
5. Phantom smells, usually something like latex or a chemical rubber-like smell (again, appearing after severe cluster headaches and/or after severe exacerbations of the continuous headache)
6. Dizziness (primarily caused by changes in my visual field such as from shifting focus of my vision from close to far away or from things moving quickly in my field of vision and trying to change my focus to follow)
7. Disorientation
8. Confusion
9. Mood/Personality Changes
10. Impaired Cognitive Function
11. Memory Loss
12. Fatigue
13. Visual disturbances that are aura-like in appearance that are constant but vary in intensity based on the intensity of the constant headache (the worse the headache, the more visual disturbances).
I have three specific kinds of headaches that are primary headache conditions; migraines, cluster headaches and hemicrania continua. And there seems to be some connection as they all have the same type of pain in the same area (sharp knife-like behind the left eye with a pressure-like pain radiating into the temple) though each one is different in intensity and some associated symptoms. For example, while I experience moderate nausea and light sensitivity with all my headaches, I am SEVERLY nauseous and light sensitive with the migraine and I just want to lay quiet in a dark room. With the cluster headache the pain is VERY aggressive and I pace and hold my head and rock back and forth and find it difficult to just lay still. The pain is so intense I have even in the past had brief thoughts during the headache of smashing my head into the corner of the door frame to crack my head open to pull the piece of brain out that hurts.
All other possible causes have been ruled out: brain tumors, MS, lupus, epilepsy, lyme disease, allergies, inadequate blood flow to my head, and probably a whole slew of other things that I just don’t know what they were testing for. I do have degenerative spinal bone disease and had to have the discs between my C4-C7 vertebra removed this past year. And while it did take care of nervous system problems I was also experiencing (tingling/numbness in extremities, coordination problems, neck tension/pain and tension headaches, fine motor control in hands, etc), it has not helped with the primary headache condition headaches.
I have been through extensive counseling for PTSD as well as taken therapy “classes” such as Dialectical Behavior Therapy, PTSD symptom management, Insomnia class to help with sleep disorders, etc, to try to learn to mitigate other issues that exacerbate the headaches or just compound my suffering.
I am SO depressed and tired of living life just suffering through headaches all the time. I have not had a break from SOME sort of headache in three years. And with the cluster headaches, after I have one and then sleep it off for several days, I know a new one will come on within the next couple of days and that I will still suffer from the continuous headache even in the few days gap between cluster headaches. I am beginning to hate the person I have become because I am irritable and cranky all the time from the headache pain. I get angry and upset at the smallest thing. I just have NO patience anymore with anything. I don’t enjoy things I used to; in some cases I am even unable to DO the things I used to because of the headaches. I cannot drive anymore because of some of the daily symptoms I have so I am dependent upon my roommate to get me to doctors and run normal life errands (grocery shopping, etc).
Doing anything that requires intense thinking causes my headaches to spike (even writing this post has taken me days of writing bits and pieces and I have referenced stuff I have written in the past for my doctors; not to mention all the grammar/spelling mistakes I have made and relied on grammar/spell checker in MS Word to correct). I am in a constant cognitive fog and feels like thinking requires a focused effort; as if there is actual physical resistance to my trying to think. I forget things now; things I would never forget before. I forget what I am doing when I am doing it and occasionally will even forget how to do what I am doing. One episode that really got to me was I was making a sandwich and in the middle of it forgot what I was doing. I realized I was holding a piece of bread in one hand and a knife with mayo on it but I just didn’t know what I was doing; I was lost. Then I realized “oh, I’m making a sandwich” but then I didn’t know HOW to make it. I just didn’t know to put a sandwich together and I just broke down. It just completely broke me emotionally that I couldn’t figure out how to do something so simple as to make a sandwich.
My cognitive function/memory has been tested by the doctors and I now rate at the lower end of “normal”. But let me add some perspective to this low “normal” rating. Prior to being declared disabled because of the headaches, I was a network engineer, the “subject matter expert” at my company and the government agency I worked for. I had a near photographic memory. My IQ had been tested at 153. My savant-esque talent was in the way I could work jigsaw puzzles (I collected them). I would lay the pieces out on the table and study them for a few minutes before I would start working the puzzle and I would be able to find pieces I needed by knowing where they were as I could remember where they were on the table from having seen them while having previously studied all the pieces laying on the table.
I went from a VERY highly intellectually functioning individual to someone who can’t even take care of themselves anymore.
Part of why I am posting is I want to know how common is it to have multiple primary headache conditions? Does anyone else have the non-epileptic seizure event preceding their cluster headache? Does any of what I wrote match what anyone else here experiences? And I guess I just want to know I am not alone. I am just SO tired and I am SO unhappy now.
Katie
PS
In reference to Linda_Howell’s Newbies, Help Us...Help You thread:
1 I currently live in Portland, OR but lived in the Washington DC area when I started having the cluster headaches. Upon being put on permanent disability and my employment terminated, being a military veteran, I moved here to gain access to the VA hospital here in Portland as they utilize personnel and services out of the Oregon Health and Science University hospital (the VA hospital is part of the OHSU campus). Many of my doctors are actually OHSU personnel. So the care here is actually better than the care I was receiving from my private doctors when I lived in DC. I am originally from northeast Alabama and was living there when I first experienced migraines though I never sought treatment as they were not debilitating. They didn’t become debilitating until 3-4 years after moving to Washington DC.
2 Already provided details on my headache experience in my post.
2a Yes, I have been officially diagnosed with migraines and cluster headaches via multiple neurologists (private and VA) as well as other specialty physicians who have ruled out all the other possible causes. The official diagnosis of hemicrania continua has not been made yet as my initial medication trial with indomethacin (responsiveness to that med is typically considered a diagnostic criteria) was when I was still being tested for other possible causes (brain tumors, MS, lupus, epilepsy, lyme disease, allergies, etc) that had not been ruled out yet. Thus, they could not rule that I could be the rare case of having HC but not responding to indomethacin until all other possible causes had been ruled out. I recently completed another medication run of indomethacin and again I did not respond to it. I am about to start a medication run of Celecoxib; another medication often used for HC.
2b While I haven’t specifically named in my post all the meds I have taken, I named the category types and probably have taken all the typical ones from each category in an effort to control/reduce the headache occurrences. I have probably tried between 15-20 different types of meds over the years. Imitrex, Sumavel, Verapamil, Propanolol, Topiramate (currently on this one), Gabapentin, Indomethacin, to name a few off the top of my head. I have also had the trigger point injections in my head with little effect.
2c As for alternative treatments, I get regular massages to help relieve stress. As mentioned I have been in therapy for PTSD and have taken various behavior therapy classes to learn to try to better cope with things; including living with chronic pain. As for getting through the headaches, hot showers have helped; not with the headache itself, but in helping lower my blood pressure (it gets quite elevated from the pain) and in helping my muscles relax from the tensing up from the pain. It just helps the “collateral damage” symptoms which give me that extra little reserve to put into enduring the headache. I have tried acupuncture years ago when I only had migraines but it didn’t help with them. I have not tried acupuncture for cluster headaches or hemicrania continua. After discussing it with my doctors, my degenerative spinal bone disease qualifies me for Oregon’s Medical Marijuana Program. Once I was accepted in the OMMP, I experimented in using it for my headaches. And while if I smoke a LOT during a headache attack it will reduce the pain, it doesn’t break the headache and actually seems to put the headache cycle on “hold”. After the marijuana is metabolized, the headache comes back full strength. I can continually “kick the can down the road” by using the marijuana again but the headache will come back and it seems as though the headache cycle doesn’t seem to “complete” as long as I keep using the marijuana to treat the headache. I have found it is actually better to just let the headache cycle complete and break on its own and have thus determined marijuana is not effective with my cluster headaches and seems to have no effect on the continuous headache. I also dislike the “high” and thus I consider it a “side effect” that I cannot tolerate in using it as a medication. It does work great for my spinal pain, but I just really dislike the stuff. There was also one migraine med I tried long ago that did the exact same thing though I can’t remember what it was or what family of medications it was in. As long as I kept eating the pills, I could keep pushing the headache off for an hour or two but at some point had to stop taking the pills and let the headache cycle complete. To date, most all my medication trials have been of the preventative types of meds. At this point, I am considering looking into some of the attack abortive meds (ergotamine, lidocaine, methoxyflourane, phenylpropanolamine, etc) and what long term use side effects they may have as nothing has helped in reducing the attacks.
2d Already provided details on the limitations and the impact these headaches have had on my life.
2e Yes, I have a good understanding of cluster headaches and my other headache conditions. Over the years I have researched a LOT in order to be my own advocate to insure I am receiving proper treatment from my doctors. I have kept headache diaries tracking not only when I have the headaches and the relevant data to them (what time I had them, intensity, etc) but my sleep schedules/patterns, what foods I ate and what times, weather information for that day, etc. Myself nor my doctors have found any sort of triggers or patterns.
3 As I have explained, I have tried to read some of the stuff here but my headaches are severe enough that I have just not been effective in sorting through the forum and reading. Most of the information provided in the medical info links was stuff I have already found out over the past three years of my own research. Wish I had of found this site before I did my own research...would have made things easier for me.
Other info: Female, 47, non-smoker, non-drinker, avoid pain meds as I do not like the “high” side effects they cause, I have had several head injuries as a young child that never caused a concussion (just several good knocks on the noggin’ causing me to see stars and that broke the scalp causing bleeding), no family history of headache disorders, MRI has shown I have lesions on my brain that are consistent with those seen in migraine patients, I have high blood pressure and hypothyroidism and while I have a family history of those conditions and was regularly checked for them, I did not show symptoms of the conditions until AFTER my cluster headaches started and I started all the various headache medication trials.
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Multiple Primary Headache Sufferer (Read 2346 times)
