New Daily Persistent Headache Support Group

Hello all

i have hemicrania continua and research usually says more women than men suffer. I am a 51 yr old man a came down with hc about a year and a half ago. would love to give and get support on this sydrome any other men have this?

Anthony

There are plenty of us, even though we're a minority: I think about 25% of HC sufferers are men. I struggled with it for 10 years before a headache specialist at Jefferson Headache Clinic (Philadelphia) gave me an accurate diagnosis. Before that it was one ineffective migraine preventive after another, not to mention all the fiorinal and advil. So far indomethacin has been working great for me. I highly recommend the Jefferson Clinic, although it can be a hassle to get that first appointment. I travel to Philly from Virginia, worth the 5-hour train ride to get competent care and treatment from people who know something about headaches.

blivet

Welcome to the group blivet! So glad you finally got a correct diagnosis. So many of these headache conditions are so alike yet so different (CDH, migraine, NDPH, brain tumor, HC, intercranial pressure, Lyme, etc). Hope to see you around here more. Best wishes.

Hi Anthony, Hey Blivet,

I'm a guy trying to deal with daily headache as well. Been trying to find answers and relief for almost 4 years now. I agree that as men, we seem to be a minority with this ailment. However, one thing I've learned here is that headache knows no boundaries - gender or age. It's tough seeing so many young adults dealing with this, and even young children.

I've actually had it thrown up to me that I must have something else wrong with me, because migraine & daily headache are "female" problems. Don't you love generalizations?

Glad to have you both around. It's sometimes easy to think that I must be the only guy struggling with this.

Steve

this is a long story and am,depressed about my future but its improving if theres a hell, it ain't much worse than what i've experienced

I'm from Ireland, 20 year old guy.

Completed leaving cert (same as American SAT) in 2008 did science in college, dropped in january 2009 and went through plenty of research to make sure the right choice

October 2009: in college studying another degree, having the time of my life FINALLY after so much uncertainity before that,

i genuniely could not have been happier, i was loving every moment and felt blessed my parents had given me a 2nd chance, great housemates, any first real girlfriend, great friends, a loving family, i'd finally come into my own after secondary school

everything was in place and then i work on morning with a feeling in my left eye ONLY as if a contacts lenses was out of place

went to doctor after doctor, opthmalogist prescribed drops couldn't find anything wrong, eye feels if it has pressure, HEADACHE,dry pain, disorientated, i'm always in pain, groogy can't hold a conversation because of it, can't wear lenses in that eye, one said it was all psychological, and well lets just say i felt angry

i used to be so bubbly and outgoing and this has totally stripped me of all energy, social life is gone to hell, people say"ah sure its just a headache" "you don't look sick"

I was exams cos i can't focus and study for them(august repeats) when i know i've the ABILITY to learn but amn't able and i want to repeat the years in

I feel the world just flying by people complain about the tiniest of problems, well i just think "jesus u have it so so easy, would you like chronic pain and see how you live with it?"

when i look at the famine in somalia, i think "wow, finally they're reporting real problems" you know?

Its made me doubt everything, god, life, society , the whole damn lot, i've pretty lost my faith in god,

I've so much to give the world and this problem is absolutely holding me back and i'm afraid i'll be some old man regreting life's missed oppurtunities.

Thank god i've supportive parents but i'm sure they're getting sick of my constant self loathing too and constant bills to consultants

Its not that i don't want too help myself, its just i can't!!! I can't make progress no matter what i do!

now i'm seeing a neurologist for hemicrania continua and he's prescribed lycria 50mg a day going up 25mg a week to ease the pain and it does help , ther are moments times of the day when the pain subsides eases and then in for maybe only a few minutes i feel momentary relief somewhat. Let me tell you appreciate how amazing life is pain free, its a gift that i appreciated before, but really didn't understand in a literal sense (id that makes any sense

I'm at home now, i took the year off as i SWORE I would not "just live with it", and go through another year of college like that, because its simply not a choice,i'm currently doing a amall college course in an area i'm interested close(i don't care if i pass or fail) but i find its very hard to relate to peers when you feel this way.

your mind is constantly at war with the physical pain (not being melodramatic) nobody can truly understand how powerful the human spirt is when you must wake up and go to bed feeling the same the whole time, you

But as awful as it is, it also taught me resevoirs of maturity,humility and i now really appreciate the extraordinary chances in every moment to be what we want and do whatever we can do (not being cheesy and I mean every word of it), I feel i have the wisdom of a 60 year in my 20 year old body and I REALLY will live every day as if its my last sunset

and I know one day soon I'l be free and I REALLY will live every day as if its my last sunset and i could write a biography a mile high because of it, climb mountains, travel

The only thing that really gets on my goat is the inability of people to appreciate boredom, "I'm bored", i appreciate all moments noweven if i can't participate fully in them , stop reaching for happiness in the future ! People have so much untapped potential and they don't realise it

That was theuraputic!

Next year, i hope to be a new man reborn, that'd be the most beautiful 21'st birthday i could ever get!

I am getting some tiny relief from lyrica but i'm unsure how long this will last! I was just feel afraid to commit to anything cos of this pain

I'm also glad to know there are other people out there like me especially guys!

Welcome to the group! I can so relate to how draining this invisible pain is. I hope you can find some relief. Work/school makes me so much worse...very frustrating. Hopefully the doc told you the Lyrica can take a few months at the full dose to take affect. An exercise in patience for sure. There are so many meds and treatments to try, so don't give up. Best wishes.

Welcome to the group. Your comments are very true. It is hard to hear other people complain about seemingly small ailments and not appreciate living their lives in pain. It is definitely very hard to work or study when you are in so much pain. I'm glad you've started treatment but it can be a long road to finding something that helps. Don't give up though, there is a very good chance you will get a lot better than you are now! Everyone here can offer advice and support when you need it.

FullReboot - "your mind is constantly at war with the physical pain (not being melodramatic) nobody can truly understand how powerful the human spirt is when you must wake up and go to bed feeling the same the whole time"

Thanks for writing this. That put into words something I was just explaining to my parents and in-laws this evening at dinner.

Hello everyone,

I am a 33 year old high school History teacher that has had a non-moving, non-ending right-side headache for 2 months, 3 weeks, and six days. I love my life, love my career...though the longer this goes I feel the reality of holding my position slipping away. When my headache set in I was having a normal school day that ended with an average faculty meeting. Whilst going to my room to get my things after the meeting, a splitting headache set in. I drove 35 minutes home with everything being too bright, too loud, too smelly, and even felt nauseous. It was September 07, 2011. I had never had a headache like this before. I came home and went to bed. The next morning my alarm went off, I awoke, and the symptoms from the day before were all there except the nausea...and the headache was only on the right side. It has been there 24 hours a day ever since. I gave it a couple of weeks before seeing my doctor. Then, on a bad day I went to the ER after school. The ER docs gave me an IV cocktail they guaranteed would end my headache. The bag went dry and I still had it. They then prescribed tramadol, told me to take the next day off, and it should get better. The tramadol made me feel warm and fuzzy with a headache...and it persisted. I then went to a neurologist who started prescribing me various 7 day cycles of increasingly more expensive anti-seizure and migraine busting meds...which all left me with less money in my wallet, all kinds of new side effects (dizziness, sudden sleepiness, chills, shakes) and a headache. After researching unilateral non-ending headaches and finding a Hemicrania Continua diagnostic checklist (which I could check every box except the 90 days of continuous headache), I finally convinced my neurologist to let me try Indomethacin. It works most days, but he refuses to diagnose me with HC. I think is hung up on the 90 days with I now have covered basically and the fact that I am a male. Has anyone else ran into an issue with this due to simply being male? I am going to seek a second opinion from a neurologist in a bigger city...am calling around this week. Like FullReboot said though, it is getting very difficult to teach in an 1100 student high school with tons of stimuli (lights, noise, smells, etc.). I am not sure how long I can do it. By the fifth day of school each week I am exhausted to the point of being ill from pushing myself so hard, trying to be the polite level-headed professional I have always been, and having people either say, "Funny, you don't look sick!", or "You get over that headache yet?". Additionally, I am seeking an additional graduate degree to become a school administrator...but that is getting hard to balance with the never-ending exhaustion of being in moderate discomfort to full on pain 24 hours a day, 7 days a week. Sorry my initial post is so large, but this all needed to come out somewhere.

In addition to the constant headache I have started having partial desensitization of the side of my face where my headache is. Sometimes it combines an almost numb sensation with a burning or electrical zapping sensation. My dentist checked my TMJ for disfunction, but says it is fine. He suggested Trigeminal neuralgia...which I have since read sometimes manifests with HC. Anyone else get this?

Post edited by: aCuppaCoffee, at: 12/04/2011 04:16 PM

Post edited by: aCuppaCoffee, at: 12/04/2011 04:20 PM

Hi and welcome to the group. I don't have Hemicrania continua (I have NDPH and migraine) but some doctors really won't give one of the chronic diagnoses until you actually pass the 90 days...even if it is textbook in every other way. They may start treating it as if it were that, but not give the diagnosis. I don't have the papers to know, but I think my NDPH diagnosis got put in the first visit I had after 90 days of headache (though I didn't know anything about it then so I wasn't counting...I suspect the neuro was).

I am not sure how often they refuse to give diagnoses because of the gender thing. They ought to be able to tell that if it is statistically 3/4 female (or whatever it actually is) that still leaves 1/4 male and not to eliminate it from diagnostic possibilities because of that. Still other men seem to have a hard time getting diagnosed correctly too so I wonder how many times doctors do just assume that they will only see the more statistically probably cases.

It sounds like getting a second opinion is not a bad idea (though after that 90th day you may suddenly be diagnosed with this neuro too). If nothing else you may find out if any other doctors have ideas of how to help get you through the week since it sounds like what you are doing now is probably not going to get you through for very long. When you are in a time limited situation like that, extra brains working on your situation is not a bad thing and it might even end up making difference in how well you can function at work and even whether you can keep the job.

I don't know how often the desensitization goes along with HC or whether that really is more of a trigeminal neuralgia thing, but hopefully some of the people who actually have HC can tell you more.

thanks thor for your post on my post about men with hc. Im glad to meet another guy with this sitution! Do u have hc?

look forward to hearing from u hope your well

Anthony