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inertia
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cognitively damaging headaches?
« on: May 15th, 2004, 2:40am » |
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hey everybody - i'm brand new to the board, and after the past few weeks of suffering my headaches without any real support, i'm happy to see that there's a community of people going through the same thing. thank you in advance to anybody taking the time to read and respond to my query - it may be a bit long.
i first started getting headaches about 19 years ago, when i was four years old. they lasted for nearly two years and i don't think i'm exaggerating when i say they came very close to wrecking my life - as a result of both the physical pain and neurological disturbance of my headaches, i was forced to significantly change my social life, drop out of classes, and virtually withdraw from the world. when the headaches finally disappeared - inexplicably - i was incredibly relieved.
then, a few weeks ago, they started up again - just as bad as before, if not worse, and of course i'm panicking because i can't help but be reminded of the turmoil these headaches threw my life into last time around. i can't be 100% positive that the headaches are CH, but they certainly don't seem to be standard migraine headaches. for starters, i don't get any of the nausea or visual symptoms associated with migraines. the pain - which is constant, severe, one-sided, and usually centered in the back of my head - can last for hours at a time, and is almost always accompanied (this is the most frightening part) by very acute neurological symptoms - notably a cognitive "fuzziness," confusion, inability to focus, dizzines, and very powerful and overwhelming anxiety. this anxiety, as you may imagine, creates a "feedback loop" of sorts, worsening the headache and the dizziness. the end result is that my headaches, and the accompanying neurological symptoms, are absolutely crippling, in every sense of the word. i'm a hard-working professional and it's becoming a concern that not only may i lose my health and sanity due to these headaches, but i may lose my job and friends as well.
i have, of course, taken steps to seek professional help. when i started getting headaches years ago i was lucky enough to get to see a neurologist who was a close family friend, and he continues to work with me to fix these headaches, but quite frankly both he and i are stumped. i've gotten an MRI scan (came up clean), taken a variety of medications (midrin, depakote, imitrex, zomig, norvasc, et cetera - only the imitrex seems to have had any effect, and in fact i had an allergic reaction to the depakote), and i've even tried acupuncture. nothing has worked.
so yes: i'm desperate, and i'm very scared. i'm sure i'm preaching to the choir here, but the prospect of living with these headaches - all all the accompanying baggage - is a scary one indeed. and i'm a young guy! is there some avenue i haven't pursued? are any of you familiar with headaches accompanied by cognitive or neurological symptoms? any help would be deeply, deeply, deeply appreciated.
THANK YOU.
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Superpain
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Re: cognitively damaging headaches?
« Reply #1 on: May 15th, 2004, 4:06am » |
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I can't do shit when getting hit. Think, walk, talk. None of it.
But it sounds like you might benefit by seeing a neuro that specializes in these types of headaches. Either that or ask your doctor/friend to check out this site and OUCH. Between the two there is enough info and links that to pretty well educate anyone about ch. Because of the rarity of the affliction a majority of neuro's, even great ones, don't necessarily have much, if any understanding of these headaches or how to successfully treat them.
Have you taken the cluster quiz yet?
When do your headaches come and how long do they last? Have you tried O2? Verapimil or prednisone? Topomax? Any other's?
Yes ch can wreck your life. But keep reading and you should fing the help and support to make your life alot better. Being an informed patient is your most valuable weapon when fighting the beast.
Welcome and good luck.
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Chris
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Giovanni
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Re: cognitively damaging headaches?
« Reply #2 on: May 15th, 2004, 6:09am » |
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Many of us here have had results with verapamil >360mg along with other drug combinations. With an abortative, imitrex injections and O2 are usually good choices. As far as home remedies, melatonin, 5-HTP, B-Complex vitamins have been helpful.
This best treatment that I have found that totally prevented the cycle I should be in now is here:
www.clusterbusters.com
I hope you have relief soon.
Regards,
John
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mynm156
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Re: cognitively damaging headaches?
« Reply #3 on: May 16th, 2004, 6:48pm » |
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Welcome Inertia,
I am glad you found us and sorry that you have to be here. One get to a Doctor probably better be a Neurologist. Then as far as your work goes look here
http://www.dol.gov/esa/whd/fmla/
The Family Medical Leave Act can protect you as long as you have been at your current job full time for at least a year.
Good Luck with finding help and keeping the beast at bay!
MYNM156
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inertia
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Re: cognitively damaging headaches?
« Reply #4 on: May 16th, 2004, 10:51pm » |
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thank you for the support, guys. when i try to explain to my non-headache friends the degree to which these headaches can ruin my life, they never seem to quite "get it."
superpain - my headaches ebb and flow, but generally speaking, since they started up again about three or four weeks ago i've had them every single day, for hours at a time. i have them more often than not. i haven't tried O2, verapimil, or prednisone. are these preventative or abortive? i do currently take topamax (75 mg in the morning, then 75 mg again in the evening), and quite frankly i haven't noticed any improvement at all. i've been taking imitrex (sometimes 50mg, sometimes 100mg), and while i notice a slight benefit from the 100mg, it's hardly significant, and part of me worries that the "rebound headaches" will make things even worse.
far and away, my biggest concern is this: how common is it for headaches like this to be accompanied by neurological symptoms? the pain alone i could stand, although it certainly wouldn't be pleasant. but the feelings of discombobulation, the cognitive fuzziness and the anxiety - they're absolutely TERRIFYING. i've been dealing with them long enough to know that it's nothing life-threatening - i.e. a tumor - but is there a school of headaches that normally comes with neurological symptoms like this?
thanks again for the help, from the bottom of my heart. without sounding sappy, i almost cried when i discovered there was a board for headache sufferers such as myself.
dan
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inertia
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Re: cognitively damaging headaches?
« Reply #5 on: May 16th, 2004, 11:12pm » |
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another question, since i'm already thinking about my headaches.
are cluster headaches, by definition, located in the front of the head, by the forehead or eyeball? i know that they're usually onesided, and my headaches fit that description - they're almost aways on the right side of my head - but mine are usually in the BACK of my head, at the nape of my neck and spreading to the right above my ear. i still feel a pressure around my eyeball but it's definitely not where the pain seems to originate.
is that normal? does that rule my headaches out as CHs?
thanks
dan
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Superpain
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Re: cognitively damaging headaches?
« Reply #6 on: May 17th, 2004, 5:40am » |
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I wouldn't rule it out, but you would be a minority. I think I know what your talking about, because mine hit the base of my skull, neck and side of the head too. Alot of times they shift around from front to back. But a majority of people feel like their eyeball is about to jut out on a sharp stick, I think...
Prednisone is a cortosteroid used for short term relief of ch, verapimil is a long term preventative and O2 is an abortive. Those are pretty much the frontline drugs of first choice for most. Everyones different and no one thing works for everyone, but those are a portion of the most successful treatments.
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Chris
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Gator
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Re: cognitively damaging headaches?
« Reply #7 on: May 17th, 2004, 6:06pm » |
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Welcome, inertia. About the neurological symptoms, did they always accompany the headaches prior to you taking Topamax a.k.a. Dopeamax? I took topamax for a while and for me it caused some of the symptoms you described, plus for me, it seemed to make the headaches worse. As soon as I got off of it the confusion type symptoms went away.
As has been suggested already: READ READ READ everything on this site and OUCH's site. Also, try this website to get info on and a list of the side effects of most drugs.
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Again, welcome to the site.
Gator
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eyes_afire
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Re: cognitively damaging headaches?
« Reply #8 on: May 17th, 2004, 6:50pm » |
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Hi Dan,
Here is some information about the diagnostic criteria of cluster headaches. This is how they are defined:
http://www.upstate.edu/neurology/haas/hpcldx.htm
http://www.regence.com/trgmedpol/drugs/dru52.html
Diagnostic criteria (IHS) (abbreviated and slightly altered)
a. At least 5 attacks
b. Severe unilateral pain in the orbit or surrounding areas, or both, lasting 15-180 minutes untreated
c. Headache is associated with at least one of the following signs on the side of the pain:
conjunctival injection (reddened eyeball)
lacrimation (excessive tears from the eye)
nasal congestion (stuffy nose)
rhinorrhea (runny nose)
facial sweating
miosis (smaller pupil)
ptosis (lowered upper eyelid)
eyelid edema (lids become puffy)
d. Frequency of attacks: from 1 every other day to 8 per day
e. Secondary headache types neither suggested nor confirmed
In my opinion, pain in the ear area or jaw area fits the definition described in part b. above because it is considered a 'surrounding area'. Also, the trigeminal nerve has 3 main branches... one leading to the eye/nose, the other to the ear, and the other to the jaw area. Pain in the eye area is more common I think.
--- Steve
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inertia
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Re: cognitively damaging headaches?
« Reply #9 on: May 18th, 2004, 3:19am » |
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again, thanks to all for all the assistance. at the risk of sounding like a broken record, it's tremendously appreciated.
gator - the neurological symptoms of my headaches far predate the use of topamax. while i can't honestly admit that i've seen any positive effect whatsoever from use of the topamax, nor have i seen any negative effect. i feel the same way about the topamax that i felt about norvasc before it - maybe it *does* in fact have a subtle or gradual effect that i'm not noticing, but as far as i can tell i might as well be taking sugar pills.
eyes afire - i have most of the symptoms you describe, to one degree or another. i definitely have nasal congestion (to the point where i've actually seen allergists, taken antibiotics and had my sinuses drained in the past). i get "cold sweats," or weird sensations of temperature changes, when my headaches hit. and while the ptosis and puffy eyelid are more subtle (i definitely view them as lesser, more secondary symptoms), i have noticed them from time to time during the course of my headache.
today a new symptom popped up - one which i haven't had a single time in my 4+ years of headaches. i got a slight, "phantom" pain radiating down through my right shoulder, armpit, and all the way down my upper arm and even touching onto my wrist and hand. has anybody experienced this before?
dan
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Superpain
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Re: cognitively damaging headaches?
« Reply #10 on: May 19th, 2004, 2:18am » |
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You need to go see a neuro. Seriously...
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inertia
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Re: cognitively damaging headaches?
« Reply #11 on: May 19th, 2004, 3:05am » |
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on May 19th, 2004, 2:18am, Superpain wrote:| You need to go see a neuro. Seriously... |
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no disagreement there!!! my appointment is next week. like i mentioned, i've seen a differenet neurologist in the past, and he's been very friendly and helpful, although we haven't had any real breakthroughs. i'm crossing my fingers that seeing someone new (armed, of course, with a full report from the previous neuro) will help me approach this from a fresh perspective.
the only good news i have is that the last MRI i did - taken about 4 years ago, mind you - came up clean.
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Tiannia
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Re: cognitively damaging headaches?
« Reply #12 on: May 19th, 2004, 2:51pm » |
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Dan
I know that for me My HA start behind my ear and readiate up and around my ear (I;m a left sider though) Even throught the HA will effect me eye and vision if it is a high Kip, the pain and pressure and heat seems to still be up and behind the ear as the focal point. Radiating pain can accompany it to the Jaw and even down into my neck and shoulder.
Retake the tests and figure that it is always better to know that you have counted out possiblilities rather then wondering if there was something there. See the neuro and if he wont listen to you then see a different one. It all comes down to getting help. And someone who admits to know knowing everything is betting then a doc that diagnoses and treats you without you ever opening your mouth.
PF Wishes,
-Tia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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floridian
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Re: cognitively damaging headaches?
« Reply #13 on: May 27th, 2004, 4:28pm » |
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The imitrex helping you points to a vascular headache.
Don't know for sure, but could be cervicogenic - arising from the spine. Do you have arthritis? Neck injury?? "Brain fog" is a common symptom of ankylosing spondylitis, a type of arthritis. AS symptoms tend to be worse in the morning, and respond somewhat to aspirin and exercise. Fibromyalgia is another disease commonly associated with brain fog - fibro involves muscle stiffness and fatigue.
Hope the neuro can put his finger on it and get you an effective treatment.
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inertia
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Re: cognitively damaging headaches?
« Reply #14 on: May 31st, 2004, 11:04pm » |
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floridan - no arthritis or neck history, and i don't have any trouble sleeping, so i don't think it's fibromyalgia, either.
in any case, here's the latest update. i saw a neuro, finally, and here's what he wants me to do, at least for now:
* quit caffeine
* exercise (4-5 times weekly, 20-30 minutes per session)
* begin taking migrahealth (an over the counter supplement with magnesium, B2 and feverfew)
* biofeedback
* continue, for the time being, on my current medication regimen (150 mg topamax/day, 100 mg imitrex as needed)
i'll be meeting with the neurologist again in a few weeks. i've begun everything in the regimen, aside from the rigorous exercise schedule, since i want to wait until i've stopped suffering from caffeine withdrawal before i plunge myself into that; i was a pretty big caffeine drinker so quitting caffeine (i'm now on day 5) has been a major change - and needless to say, my headaches and "brain fogs" have sprung back with a vengeance. i know that quitting caffeine can induce headaches, but how long is it supposed to last? does this treatment plan seem to make sense, at least as a preliminary step?
dan
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floridian
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Re: cognitively damaging headaches?
« Reply #15 on: Jun 9th, 2004, 4:53pm » |
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I've heard that most people have a day or two of rebound headaches if they quit cold turkey. I wouldn't be surprised if some people have them for a week. Other things like fatigue or fuzzyness could take longer to clear up.
The no-caffeine/more exercise/migrahealth/biofeedback program is good general advice. In the absence of other information about the cause of your headaches, it sounds quite reasonable. Keep reading and working with the doc to try to figure this out.
Do some digging on 'benign paroxysmal vertigo' - this is a condition that often accompanies migraine, and might be at the root of your dizziness and anxiety.
Also, I just reread the entire thread, and thought I should point out that some with migraines lack the classic visuals (aura) and not all migraneurs vomit.
If imitrex is the only thing that works, consider asking the doc about trying 5-HTP. It is the immediate precursor of serotonin, and has helped migraneurs and some people with anxiety. Feverfew takes weeks to gradually take effect, but 5-htp is very quick acting. Careful about mixing it with triptans or anything that boosts serotonin (SSRI's, MAOIs). Do some reading on this before (if) you go down this road.
Anxiety has lots of different causes - sometimes psychological, but often biochemical. My anxiety went from severe to mild when I changed my diet - but there is no magic diet for everyone - you have to find what works for you (and it may not even be diet).
Quote:
Adv Exp Med Biol. 1999;467:177-82.
L-5-hydroxytryptophan can prevent nociceptive disorders in man.
Nicolodi M, Sicuteri F. Interuniversity Centre of Neurochemistry, Florence, Italy.
Prevention of primary pain is a new topic, endowed with social and economic interest. We observed that L-5-HTP can induce a significant decrease of the cropping out of migraine, the commonest primary pain. This finding seems interesting, since it represents the first data in the field and was obtained in a prospective, long-term, placebo controlled study. The result obtained suggests that CNS abnormalities underlying the mechanism of migraine can be changed by L-5-HTP, if the amino acid is administered to subjects who are predisposed to headache.
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Quote:Schweiz Med Wochenschr. 1991 Oct 26;121(43):1585-90. Related Articles, Links
[Comparison of the effect of 5-hydroxytryptophan and propranolol in the interval treatment of migraine]
Maissen CP, Ludin HP. Klinik fur Neurologie, Kantonsspital St. Gallen.
The efficacy of 5-hydroxytryptophan and propranolol has been studied in the interval treatment of migraine. 39 migraine patients have participated in a double-blind trial. After a placebo run-in of one month, the patients received either 5-hydroxytryptophan or propranolol for 4 months. The treatment with both substances resulted in a statistically significant reduction in frequency of migraine attacks. Furthermore, in the propranolol group the duration of the attacks and the number of analgesics used for treatment of the attacks were significantly reduced. Although propranolol, which is considered a reference for the interval treatment of migraine, is more effective, 5-hydroxytryptophan is a possible alternative for many patients.
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| « Last Edit: Jun 9th, 2004, 4:58pm by floridian » |
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floridian
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Re: cognitively damaging headaches?
« Reply #16 on: Jun 10th, 2004, 9:36pm » |
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Most sources I have dug into consider usually add the word "positional" to bening paroxysmal vertigo, and they classify that as being caused by small stones or debris in the vestibular canal around the ear. But I believe these symptoms could be caused by temporary changes in the blood flow or nerve activity to that area (possibly by a migraine-like disease).
Basilar migraine also seems to overlap these symptoms, and the migraine history and imitrex working is consistent:
Quote:Basilar migraine (replaces basilar artery migraine) - Fulfills criteria for migraine with aura but 2 or more aura symptoms of the following types occur: vertigo, tinnitus, decreased hearing, ataxia, visual symptoms in both hemifields of both eyes, dysarthria, double vision, bilateral paresthesias, bilateral paresis, and decreased level of consciousness.
http://www.emedicine.com/ent/topic727.htm |
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| « Last Edit: Jun 10th, 2004, 9:48pm by floridian » |
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