has anyone out there have any type of headaches 24 hrs a day?

hi its ashley  i  have cervical headaches for almost 2 years now. they are there from the time a wake up until the time i go to sleep. cant work cant go to school. i hardly ever leave the house. been hospitilazed 3 times. also tried ton of meds,steriod injections in the facets of the neck. i was in thomas jefferson headache center phila for 9 months. left them and now with columbia headache center in nyc. waiting for botox to be approved. next stop will be montifiore headache center in the bronx. they look alittle bit more promising if you read about them. but thats what they all say. what i am asking is does anyone have headaches 24 hrs a day non stop. right now i have to take morphine pills 90 mg a day and percocet in between. and that doesnt kill the pain. has anyone out there been helped, meaning gotten rid of their headaches completely,or where the meds have worked and you can function like a normal person. if so where did you go. i just want to die. maybe i am just a weak person

                                                                             thanks ashley

Hello Ashely,

I have Chronic Daily Migraines, meaning all day every day.  Sometimes it's just so hard to make myself get out of bed in the morning because I know my day isn't going to get any better.  I've been hospitalized a few times, like you.  I've also tried just about every med there is out there for migraines and only narcotics help.  Sometimes the only thing that gets me through the day is knowing that there are many other migraine sufferers out there, that are worse off than I am, that keep going on in their lives, despite the severe debilitating pain. 

Trust me, wanting a way out of the pain doesn't make you weak.  Just the fact that you chose to keep going and keep trying new treatments makes you a very strong person. 

I'm probably not the best person to be offering advice because there have been so many times that I have just wanted to give up on everything, but if it's possible, try to draw strength from other migraine sufferers.  Talking with the people on here and people I've met in migraine clinics has really been a life saver for me. 

If you ever need anything, I'm here for you,

~Liz

Five-plus years there now...

Honestly, it does feel weak to be so incapacitated. But I've been assured plenty of times I'm not. Really, it's about making things as good as they can be (or "least bad" if you prefer). Find the drugs that'll take you from a 10 to a 9. If that's the best you can find, it's still better to be at a 9 most of the time than a 10 all of the time. You may not be able to work or get any work done or do much socially but, what you can do, do. I think the best lesson that I learned from a therapist (maybe one of the only lessons...) is that, although we must continue to seek the best treatment possible and should not give up hope, we need to accept that our lives are the way they are right now (ie. "I am living with a persistent debilitating disease") and be the best Ashley, Liz, Sarah or Ben with a really bad chronic disease that we can be, even if it's not what we'd expect out of ourselves if we were healthy.

Otherwise, good luck with the Botox and treatment in general at Columbia and Montefiore. I had the Botox done at Jefferson about two years ago a few times (to no avail, of course) and I've recently been in touch with Columbia, Montefiore and many other centers and, unfortunately, they've all really told me that they don't offer anything that Jefferson doesn't...so I'm a bit stuck. However, I've found a neurologist who does some work with Ketamine infusion and headache so I'll keep on with my (slightly) helpful daily meds and lots of narcotics until I find something better. In the mean time, I'm doing what I can.

Best wishes,
Ben

marylin said...

Since 2004 migraine has slowly taken over my life.I was hoping when I hit the ripe old age of 5o they'd go away.Umm no......

I swear to God if this was mainly a man's disease,it'd be cured or there'd be better treatment.I mean,Look at ED,no problem.Wow,thank God they've got a pill for that....

You are young,so I feel there is hope for you.

Wow. I am truly sorry that you have been experiencing sporadically high levels of migraine pain for a few years but you've made quite a few rather...misinformed comments.

Migraine can be extremely hard no matter how often and how severely you have it, but in this thread we were discussing 24/7 nearly maximal pain that have had TOTAL control of our lives for many many years. You certainly deserve a place in this discussion, but you kind of come off like you're trying to lord your experiences over us. For your information, being young isn't always a good thing. Under the age of ten, migraine incidence is much lower and the chance of full recovery is very good. In young adults, however, migraine incidence is nearly as high as it gets. Some people do think that reaching a certain age might be the time for instant recovery but that is pretty rarely the case. However, following middle age and menopause, migraine incidence does rapidly drop statistically. So, being older, you have a statistical probability of suffering for less time.

As for the comment about there being no cure for migraines because at many (but not all) ages, there are more female sufferers, I think that you could not be further from the truth. First, my opinion: it seems that, as men have historically (and even to some extent to this day) had more influence in medical research and advances, they have often followed the common male instinct to put their efforts into being caregivers for the womenfolk. Some factual observations: Migraine research has figuratively exploded in the last 15-20 years. There are increasingly more and more treatments (I've only had persistent severe migraines for a little over 5 years and I've seen many new treatments emerge). As for comparing its treatment to that of ED, the US population has recently become older and older and many medical resources are pout into improving quality of life at old age. The essential fact, however, is that ED is MUCH a much less complex problem than migraines. Sure, migraine incidence might be about twice as high in women, but ~10% incience in men is no mean number.

If you really want to make a comparison about female-dominated diseases and their correlation to research, take a look at breast cancer. It shows up more than 100 times more commonly in women than in men. It receives oodles and oodles of research money, despite being the 5th leading cause of cancer death. There's no "Lung Cancer Awareness Month" and very little attention is paid to prostate cancer (a similarly devastating, male disease).

Anyway, I think it's very unfair to blame your lack of successful treatment on the female-dominance of the disease, especially when there's a very respectable (and ever increasing) amount of research being done on migraines. Sure, I'd like to find something to blame for my intractable migraines as well, but don't think no one is trying.

I very much hope that your migraines improve Marylin--I nearly tremble imagining how bad many people's migraines might be if they did not have the insurance to cover continued specialty treatment.

  Ben,

     The words you wrote mean alot to me.I understand the pain part.So many times I'll snap at family out of the blue.They get shocked because that's not me.It sounds weird,but I miss who I was.I mourn for the person I was,flaws and all.I had energy,I was a people person,I am grateful that I didn't have this migraine situation until my daughters were raised,well,the youngest really got cheated.But I've done the best I can.I have a dry sense of humor and I try to watch shows like Scrubs or Weeds that bring me up.

     My doctor,when I had insurance,sent me to a physical therapist known to help migraineurs.No luck there.I tried accupuncture.I went to an internal medicine doctor after my neuro closed his office.I had a horrible time with thyroid.No one in my family ever had a problem,so I never dreamed I would.I was ignorant where thyroid was concerned and always thought only heavy people get it.They said it was hashimoto's.I had goiters,it was getting hard to swallow.They put me on steroids and then when the swelling went down did the biopsy.My hair was falling out.My face was puffy,I looked like death.I was so tired and I had what the doctor thought was a throid storm which set off panic attacks,which I started taking klonopin for and am still on.

    I tried topamax and I never believed in side effects too much of meds,but I never had a med make me so ill so fast.I still think I have thyroid issues.What happened with my insurance was that after a year of having insurance,they said my thyroid was pre-existing.They then put just about everything under it and wouldn't pay for months worth of office visits and treatments I had.Even tho many,like my internal med doctor was for migraine and I was getting hormone therapy and a yrly checkup,they never paid her or the lab a cent.I was so sick then that I couldn't fill out the mountain of paperwork sent to me by the time they told me they wouldn't pay.My endo's office said this insurance company is known to do that.She said it wasn't legal for them to just stop paying the endo,but they did.So,I lost all the doctor's I had,I paid all that insurance and owed the doctor's.So they really got me good.

    I've done the tea that the accupuncturist gave me to make.I used to go to the fitness center but couldn't because of the pain.I haven't been to church in so long.

    The er treatment here is to say the least horrible.I went in one time and they put me in the room where they put casts on,the brightest room.I told the nurse I couldn't be in there,she said it was all they had.Less than 5min later she came back in and said they had to move me.I told her I'd get sick if I got up.I got up and passed out,instead of falling forward,I went back.The pain shot up in my head,I started convulsing.A doctor came over and grabbed me by the arms and yelled in my face to stop it.I passed out again and was in another room,dark.

     Another visit,I knew it would be a wait,we got there at 5:20pm.I was in a hospital wheelchair,I was so dizzy I couldn't walk.about 3hrs later a man about the same age as me came in,in a hospital wheelchair with a cloth over his face.I knew right away it was migraine.They took him in right away.By 10:15pm they had seen everyone that was there when I came in and 8 people that came in after me.One guy walked in,they took him in,he left,driving himself with a prescription.So finally,I had to say something.My daughter was sitting there with tears just streaming down her face.I go prepared,sunglasses,ballcap,small blanket.Anyway,after complaining,the nurse threatened me with security.Amazingly,I was seen next.

     There's more but you get the idea.I keep dramamine for vomiting,because once I start,if I don't have that here,I don't stop.The clinic I go to is very good to patients.They really care.I take effexor,which I want to get off.I told my counselor(the clinic has a policy if you're on klonopin,you have to be seen.Anyway,I told him I can't do the pain anymore.Oh,I skipped the one er story that was the last time I went there.My doctor gave me a letter to take to the er,she called and told them I was coming.She said on the phone and in the letter that she wanted and I needed to be admitted.When I got there and finally was seen,they wouldn't look at the letter in triage or when I was seen.They said they didn't care who my doctor talked to,it didn't matter what the letter said.

    So,my plan is to get another letter from the doctor and go to a larger hospital in the next county.I've had 2 kids natural childbirth,one c section,2 kidney stones,4 teeth pulled at once,a broken ankle,but this pain for this long is too much.So,if they don't do something for me there,they can just put me on the mental ward.I know someone who is a friend of a doctor there and he can help me.I will be getting a hold of my doctor tomorrow.And something has to be done.

     Sorry for the long reply.I don't talk too much about the pain,in fact it hurts so much to talk,I don't talk much at all anymore.So I guess I got carried away.

     If my plan doesn't work,I'll be back to let it be known.Because at that point,I'll really be stuck.

Marylin,

I'm glad that my initial, inappropriate hostility was able to be diffused. I too very much relate to your concerns about personal irritability. I used to ALWAYS do absolutely everything I could do to be a kind, patient positive person and do good to others no matter the circumstance. I do still feel that I AM that person, yet I too mourn so very much my frequent inability to express it, whether it be because of general irritability, too little energy, or too much pain. It's truly like losing your identity and, although I try to fight it tooth and nail (which isn't always feasible), it often hurts me more than anything else. My sense of humor is quite unique as well--I love the shows that you mentioned :)

I, very fortunately, have not (at least during the time I've had migraines, though the past in another story) had severe secondary problems like the endocrine issues that you discussed, though, like most of us with severe migraines I have great difficulty with depression and anxiety/panic. I also started taking Klonapin um....about 2 years ago now I think, and it's an particularly vital drug that I need to be able to get any quality of sleep. While I initially started taking it to combat the side effects of the strong neuroleptics/antipsychotics that my migraines were being treated with, as well as severe anxiety, I now will trash and kick and shake and twitch in my very light sleep if I don't take at least 4-6 mg a night. While I haven't noticed any bad effects from it--other than feeling worse when I miss a dose--I've read some scary things about it's addictive properties. According to one source (this was a while ago--I don't have it in front of my, so I'll paraphrase), taking Klonapin for long, extended periods of time can cause dependency that can last anywhere from months to years to the rest of one's life. Yikes.

I've tried acupuncture and some physical therapy as well (my father, luckily, is actually a physical therapist). Some other things that I've tried that, while they have not helped me, have helped many of my friends with similar problems are biofeedback, massage (especially certain specialty types, or even seeing a chiropractor has helped a lot of people--though I've very skeptical of chiropractice), and yoga, as well as certain herb, vitamin, and enzyme supplements (like B vitamins, Co-Q10, 5-HTP, SAMe, Vitamin C, Magnesium, feverfew, butterburr and many others).

I've also run the full gamut of preventative and acute treatment drugs, like the topamax that you mentioned. I, too, responded horribly to the Topamax, though I did, for a short period of time, do better on a similar anti-seizure drug called Zonegran. I've also had the antiphycitiotics/anti-bipolar drugs like Lamictal, THorazine, Zyprexa, Haloperidol, Droperidol, Abilify, Depakote/divalproex and others. Then anti-inflammatories like Indocin, Vultaren, and various steroids. Tried all the triptans, weird drugs like oral, nasal and IV lidocaine, methergine and muscle relaxants. Tons of antidepressants --nearly all of the SSRIs and SNRIs, as well as the MAO inhibitor that I'm on now (Emsam). I've also had botox injections, nerve block and trigger point injections, bodine infusions, implanted nerve stimulators in two locations and of course multiple hospitalizations. Also, a ton of opioids and other similar painkillers.

Anyway, sorry--that last part got away from me and I ended up just listing a lot of the treatments I've had. I didn't get a chance to address everything that you wrote and ended up just squeezing all of that in because I'm just about to be running late to my appoint at the Jefferson Headache Center (yay...they can tell me again that there's nothing else they can do and just prescribe me some more oxycontin....). I will try to write a better response latter today or at least soon.

Thanks Marylin. Very best wishes,
Ben

I have experienced constant headaches (mostly cervicogenic headaches with migraines thrown in here and there) for approximately 12 years now.  I had headaches before that but not constant.  I have tried everything most people could thing of.  I was a in a botox and myobloc trial for a period of time and I am asking anyone who is considering botox to please read up on it before you do it.  It may just be a coincidence, but after I went through the trial -- I became disabled and unable to work.  I developed fibromyalgia and chronic fatigue and epstein barr, ibs and now the possibility of crohns.  I am not saying all this was caused by the botox, but everything fell apart after I was in the trial.  I know most people (including myself) will try anything to get rid of the pain -- but please just read everything you can about it before you do it.  Botox is botulism - a poison - so of course you have to expect risks -- thats why I am advising you to look into it before you jump on the wagon.  After my first treatment I felt pretty good for a few days -- but the pain was not gone for very long.  And eventually it did not help at all.  I have had the C2 nerve cut because my headaches tend to start in my neck and go up into the occipital area and over my head.  That surgery helped for 6 mos.  I could not believe it -- I could not remember the last time I had not woken up or worked without a headache -- then all of a sudden the 6 mos. went by and they were back.  The pain had rerouted to another nerve.  Again, I had looked at the odds of how favorable this surgery was -- so many out of this percentage, etc., but when I looked at the overall picture, the percentages were very deceiving.  That surgery was in 2000.  Now I take oxy 3 times a day and migraine meds as well and they have upped my BP meds as Toprol is supposed to help with headaches.  I am never without a headache.  The oxy helps me get by.  I do not make the trips to the ER anymore like I did because I found they were no help.  They would give me rescue meds or shots and come back 30 min. later and say you must be feeling better -- I would shake my head -- nothing had changed.  So when they really get to me I lay down with a blindfold on and try to relax and sleep a bit.  Of course all the other illnesses that I have now have made it so I cannot work after being at the same job for 26 years.  Before I stopped working I would lay on the floor during my lunch hour and try to get the pain to subside enough so I could make it through the afternoon.  Taking the heavy pain meds while working was out of the question, my job required that I be alert.  I am now on Long term disability from my job and am on Social Security.  I try to look at the good side of things and be optimistic.  I go to the neurologists office and I look at the people there who are in much worse shape than I am.  I spend a lot of time in bed, I am not a social person any longer, I was always happy before and am not now, but I try to remember and when I go to that doctors office I do remember, there are many people worse off than me.  I try to hand all of this over to God.  I have a tendency to take it back and try to fix it all myself, but I am trying.  I go to a Headache Clinic at Dartmouth Hospital in New Hampshire.  There are very good doctors there, but they only have so many answers.  We just hope that something comes along that will take care of this in a better way.  But truly I don't know how many of you have tried oxy for your headaches, I am aware that a lot of doctors will not prescribe it, but my pain clinic did and it is the only thing that makes these headaches bearable for me.  It has kept me away from the emergency room and it has helped me get a handle on things.  So it may be worth talking to your doctor about.  I am monitored very closely with this drug so that I will not abuse it. 

I don't think I have really helped anyone with my answer, but I did want people to know that there are others who have these day in and day out headaches and also that I feel if you can find some books to read on this subject you should do it.  It helps you ask good questions when you see the doctor and it helps you be your own advocate.  Sometimes doctors just shove a prescription at us over and over again and nothing helps and we get discouraged.  But if you are knowledgeable about the meds and treatments you can talk to the doc and get some good answers.  Also if your doctor is just a "pill pusher" and keeps giving you more and more meds -- see someone else -- search for a headache clinic in your area.  If you are near a bigger city you will definately be able to find one.  If you are near a medical university you should be able to find one.  I hope this helps even just one person.  God Bless, Alice