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

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givenup
Regular Member


Date Joined Aug 2007
Total Posts : 94
   Posted 2/7/2008 5:31 AM (GMT -7)   
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

research_babe
New Member


Date Joined Jan 2008
Total Posts : 14
   Posted 2/7/2008 7:35 PM (GMT -7)   

Dear givenup,

Anyone who could endure what you have in the last year is anything but weak.  Don't listen to that voice that says your a lost cause.  Even if you think you've already given up and it's over...

Lift your head.

Gather your strength.

Reach for Hope.

Lift your head because you are a unique and gifted woman.  Gather your strength because you are worth fighting for and because you have what it takes to make good choices for yourself.  Reach for hope because healing is not some figment of imagination out of your reach. 

Take a deep breath.  Search your heart.  If what you are doing isn't working maybe it's time to try something new.  I myself was in a desperate place once- completely unable to function and barely able to leave my house even on a rare occasion.  Everyone is different... but I found that ultimately, my answers didn't lie in pills or pain killers.  Keep searching here and in other places and you may find something that makes sense to you that seems doable too.  Don't give up.  Don't give in.  Now is the time to fight for yourself.

May your search for Truth yield blessings of Peace and health.

 


~Liz
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 2/7/2008 9:08 PM (GMT -7)   
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
Dx: Chronic Daily Migraines & Chronic Depression
 
Daily meds: Trazadone, Norpramin & Cymbalta
PRN meds: Tylonal #3


sarahswan
Regular Member


Date Joined Dec 2007
Total Posts : 57
   Posted 2/8/2008 10:25 PM (GMT -7)   

Hi Ashley,

Like Liz, I have suffered from chronic daily migraines. I can completely relate to waking up with a migraine, having one all day, and falling asleep with a migraine. For over a year and a half, I was in the state you are in now of being unable to function in my daily life. I couldn't work (I was already done with school at that point), couldn't participate with my family (even simple things like eating meals with them or watching a movie), and rarely left the house. Before I realized there were people out there like me, I honestly thought I might be going crazy.  So, hang in there. There are going to be days you feel like giving up, there is a lot of confusion, but as liz pointed out YOU ARE NOT ALONE!!

I found help after being referred to a neurologist who specializes in migraines. She was the first to really listen to what I was saying, and *gasp* have an explaination for what was going on, and even offer a treatment plan! I hadn't been placed on narcotics, but I know that her (my neurologist's) goal is to get all of her patient's off of narcotics. Narcotics, just like triptans (and many other drugs) can cause rebound headaches. The biggest thing that worked for me was changing my diet. I went off of all common migraine food triggers. I have heard in some headache centers they change patient's diet as well, but only for the duration of your stay. I found it was quite a few months before my body was able to clear out everything (all the toxins) from my system. Then I really started to see results! If you haven't already, try eliminating some of the most major triggers from your diet such as MSG, aspartame/sucrose (so stay away from everything "sugar free"), soy products (these contain MSG), and caffeine. Keep a journal to record any changes. I used to hate keeping a journal, b/c everyday I had to write "had a migraine," but as things started to level out for me it was really helpful.

I agree with Liz. Having others who can relate has been so helpful for me. Especially people who understand the everyday migraine phenomenon. If you need someone to talk to, or just to listen, I'm only an email away. Sending good thoughts your way.

 

~Sarah

 


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/9/2008 12:19 PM (GMT -7)   
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
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


marylin
New Member


Date Joined Aug 2007
Total Posts : 15
   Posted 2/9/2008 4:58 PM (GMT -7)   

   Ok,

    Right now may not be the best time to reply,but I'm going to....Migraine is a Disease,we can't pray it away,wish it away,hope it away.I've had migraine for more yrs than I knew(before migraine was known as a word really_/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 am Never without pain.The only difference is what level I'm at.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.That doesn't lessen what you're going thru.Do not let anyone make migraine trivial to you.It is not,and it can be a dangerous disease.

     Demand treatment.I've tried alot of meds,right now I'm sol because I have no insurance.Thankfully there is a good clinic close by who care.The problem is,there's only so much they can do.

      You are not weak.Don't let anyone make you feel that way.Don't let yourself feel that way.Anyone who deals with migraine has inner strength that they never knew they had.It's a horrible,disrespected disease.When I go to the er and the nurse with the squeaky loud voice says,oh a headache,I want to throw up on her.

        Take care of yourself.I've had a high level of pain for 2 days so I'm at my wits end.But you need to know you are strong.There will be many around you who may not be supportive.Don't let them pull you down.


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/10/2008 11:48 AM (GMT -7)   
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.
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


marylin
New Member


Date Joined Aug 2007
Total Posts : 15
   Posted 2/10/2008 4:59 PM (GMT -7)   
  First of all,what I meant by being young isn't a good thing,I've got a daughter 29 yrs old who gets migraines.What I meant was,they may have hope for better treatments as far as meds and as far as migraine being a disease.Second of all,I've been home bound for more than 3 years.I wasn't talking down to anyone.You seem to have issues.
 Your Quote "
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.
 
  I've had migraine since my first pregnancy,I was 19.I had migraine w/out pain.Back in them days,what was migraine.I dunno.All I knew was I would see spots,get blurred vision,zig zag lines.It happened for years.I have 3 kids.At times I'd be driving down the road and I'd have to pull over until it cleared.In my 30's I'd wake up with a headache every day but it'd go away after awhile.One day in 1999 or 2000 the big one hit that sent me to the hospital.Throwing up,until I was just dry heaving.I had my husband stop because my head was so bad I was rolling on the sidewalk.I passed out when I got to the hospital.After quite some time of being out,except to come to and dry heave I was seen.
  From then on,it was progressive.I've been to a neuro,a physical therapist,a therapist,an internal med doctor,an endoconologist because of thyroid,which I was told by my neuro if they got my thyroid under control,it may help with migraine,I've been done accupuncture and homeopathic.Oh,by the way,I've not gone thru menopause
Science daily Fact:

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Why Women Get More Migraines Than Men

ScienceDaily (Aug. 8, 2007) — For every man with a migraine, three women are struck by the severe headaches that often come with nausea, sensitivity to light and sound, and aura. That means a staggering 18 to 25 percent of women suffer from migraines, making it one of the most common disabling conditions faced by women around the globe.

 

This 3-to-1 ratio raises the obvious question: Why? The reason, suggest researchers at UCLA, is that women may have a faster trigger than men for activating the waves of brain activity thought to underlie migraines. If the theory is correct, this triggering mechanism may be a new target for migraine treatment.

Reporting in the Annals of Neurology, currently online, Dr. Andrew Charles, director of the Headache Research and Treatment Program in the UCLA Department of Neurology; Dr. Kevin C. Brennan, a clinical and research fellow in Charles' lab; and colleagues used a mouse model to discover a big difference between males and females with regard to a phenomenon called cortical spreading depression (CSD), which is thought to be a chief culprit in causing migraines.

In a separate study, to be published in the September issue of the Journal of Headache and Pain, the researchers report preliminary success in preventing migraines using memantine, a drug that blocks CSD waves.

Migraines were once thought to be caused primarily by constriction and dilation of blood vessels, Charles said. Now, thanks to various neuroimaging techniques, it has been shown that migraines may begin as a problem of brain excitability. Patients with migraines show cortical spreading depression, which is characterized by dramatic waves of activity that spread across the surface of the brain. CSD may in turn trigger not only the pain of migraine but the visual symptoms, nausea, dizziness and difficulty concentrating so common in migraine patients.

Brennan, working in Charles' lab, used imaging techniques to visualize the initiation and spread of CSD in anesthetized male and female mice. Female mice showed a significantly lower threshold for CSD when compared with males. In other words, it was much easier to evoke the waves of brain activity believed to underlie migraine in females than it was in males.

"The results were very clear," said Charles. "The strength of the stimulus required to trigger CSD in males was up to two or three times higher than that required to trigger the response in females."

A variety of factors may reduce the CSD threshold in both sexes, making them more susceptible to migraines — these include genes, hormones and environmental triggers such as stress, diet, changes in sleep patterns and a host of others. While it is known that migraines in females fluctuate with the menstrual cycle and are more frequent during the menstrual period, the study results appear to be independent of a specific phase of the cycle, according to Charles.

"We didn't monitor the estrous cycle in the female mice, so it's likely we sampled from different estrous phases in different animals," Charles said. "Yet we still found a consistent difference in the CSD threshold between males and females. Our results suggest that the female brain has an intrinsic excitability that predisposes them to migraine that may not be simply linked to a specific phase of the menstrual cycle."

These results are exciting, Charles said, because they may represent a model for understanding the mechanisms underlying the increased prevalence of migraine in women. In addition, they add to growing evidence that CSD is a key target for the development of new migraine treatments.

In a separate study, the researchers identified what they hope will eventually be a new treatment option for migraine. They found that a medication called memantine (brand name Namenda), which is currently approved for the treatment of Alzheimer's disease, inhibits CSD and appears to be a highly effective treatment for some patients with frequent migraine.

In the retrospective study, 54 patients who were treated with memantine for at least two months were asked to fill out a survey describing their experience with the medication. The majority, 36, reported a substantial reduction in estimated headache frequency. These were all patients who had previously tried other treatments without success.

While Charles cautioned that these results need to be confirmed with a larger study, the encouraging results are an example of how new insights into the basic mechanisms of migraine are leading to novel approaches for therapy for the hundreds of millions of individuals worldwide who suffer from this disabling condition.

Funding for the CSD study was provided by the National Institutes of Health. Other authors included Marcela Romero-Reyes, Hector E. Lopez Valdes and Arthur P. Arnold for the CSD study, and Romero-Reyes and Charles Flippen for the memantine study.

Adapted from materials provided by University of California - Los Angeles.

This 3-to-1 ratio raises the obvious question: Why? The reason, suggest researchers at UCLA, is that women may have a faster trigger than men for activating the waves of brain activity thought to underlie migraines. If the theory is correct, this triggering mechanism may be a new target for migraine treatment.

Reporting in the Annals of Neurology, currently online, Dr. Andrew Charles, director of the Headache Research and Treatment Program in the UCLA Department of Neurology; Dr. Kevin C. Brennan, a clinical and research fellow in Charles' lab; and colleagues used a mouse model to discover a big difference between males and females with regard to a phenomenon called cortical spreading depression (CSD), which is thought to be a chief culprit in causing migraines.

In a separate study, to be published in the September issue of the Journal of Headache and Pain, the researchers report preliminary success in preventing migraines using memantine, a drug that blocks CSD waves.

Migraines were once thought to be caused primarily by constriction and dilation of blood vessels, Charles said. Now, thanks to various neuroimaging techniques, it has been shown that migraines may begin as a problem of brain excitability. Patients with migraines show cortical spreading depression, which is characterized by dramatic waves of activity that spread across the surface of the brain. CSD may in turn trigger not only the pain of migraine but the visual symptoms, nausea, dizziness and difficulty concentrating so common in migraine patients.

Brennan, working in Charles' lab, used imaging techniques to visualize the initiation and spread of CSD in anesthetized male and female mice. Female mice showed a significantly lower threshold for CSD when compared with males. In other words, it was much easier to evoke the waves of brain activity believed to underlie migraine in females than it was in males.

"The results were very clear," said Charles. "The strength of the stimulus required to trigger CSD in males was up to two or three times higher than that required to trigger the response in females."

A variety of factors may reduce the CSD threshold in both sexes, making them more susceptible to migraines — these include genes, hormones and environmental triggers such as stress, diet, changes in sleep patterns and a host of others. While it is known that migraines in females fluctuate with the menstrual cycle and are more frequent during the menstrual period, the study results appear to be independent of a specific phase of the cycle, according to Charles.

"We didn't monitor the estrous cycle in the female mice, so it's likely we sampled from different estrous phases in different animals," Charles said. "Yet we still found a consistent difference in the CSD threshold between males and females. Our results suggest that the female brain has an intrinsic excitability that predisposes them to migraine that may not be simply linked to a specific phase of the menstrual cycle."

These results are exciting, Charles said, because they may represent a model for understanding the mechanisms underlying the increased prevalence of migraine in women. In addition, they add to growing evidence that CSD is a key target for the development of new migraine treatments.

In a separate study, the researchers identified what they hope will eventually be a new treatment option for migraine. They found that a medication called memantine (brand name Namenda), which is currently approved for the treatment of Alzheimer's disease, inhibits CSD and appears to be a highly effective treatment for some patients with frequent migraine.

In the retrospective study, 54 patients who were treated with memantine for at least two months were asked to fill out a survey describing their experience with the medication. The majority, 36, reported a substantial reduction in estimated headache frequency. These were all patients who had previously tried other treatments without success.

While Charles cautioned that these results need to be confirmed with a larger study, the encouraging results are an example of how new insights into the basic mechanisms of migraine are leading to novel approaches for therapy for the hundreds of millions of individuals worldwide who suffer from this disabling condition.

Funding for the CSD study was provided by the National Institutes of Health. Other authors included Marcela Romero-Reyes, Hector E. Lopez Valdes and Arthur P. Arnold for the CSD study, and Romero-Reyes and Charles Flippen for the memantine study.

Adapted from materials provided by University of California - Los Angeles.

  Well,I of course tried to edit the post,you should get the original.Anyway,like I said,there's no reason for bitterness.It's fine to disagree,but to attack,no reason at all.Forums are for support.That's what I was doing,and I wanted to focus that support on the person needing it.I didn't think my life history of migraine was needed.Who's coming off as lord of that experience is you toward me.Other than what I said about if it was a man's disease...I wish the money they put into research for ed had been put into migriaine.

  As far as men doing research to help us womanfolk,yes,well,I'd hope so.I've got nothing against men.I'm married 30 yrs,I've got 3 brothers,2 grandsons.I wouldn't wish this on them anymore than my daughters or 2 grandaughters.I know you probably got the first post talking about my sister who worked in the medical field over 30yrs.Lost her job and became ill.She was diagnosed w/ms and later w/Parkinsons.It's been a long battle,she's been fighting for disability,in about a month she'll find out if she gets it,this is the third time up.She's had to cash in her retirement,if this doesn't go thru,she'll have to sell her home and live with friends.So it can happen to anybody.

   For me,I didn't really get any better treatment with insurance.Look,migraine is a disrespected disease.These forums are a place to come to not get put down.I didn't talk like a know it all,and I didn't deserve your insults. I've had migraine since I was young.And you knew what I wrote wasn't the way you took it.If you want to pick a fight,there are forums out there just for that.If you want to have a civil discussion fine.Don't try to twist what I've said.

 

Post Edited (marylin) : 2/10/2008 5:21:53 PM (GMT-7)


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/10/2008 9:50 PM (GMT -7)   
Your encouragement and well-wishing was appropriate and genuine, I'm sure. I just got set off by your comment about sexism in medical research. I read a lot of research, have done some professional research and would be in medical school right now if not for the migraines. I really feel that your comment was very unfair from that perspective, but I definitely in the respect that you say that you wish the money for ED research would go into migraine.

I'm sorry I came on so strong....I think it was just kind of the nature of the topic--24 hours a day/365 days a year migraine. It sounds like you've had some really bad and upsetting migraines for a long time and I think I unfairly trivialized that. Honestly, to truly say this without it being directed at you, I sometimes get a little upset when people who don't have the "every-minute -of-my-life-is-pain" situation relate to those of us that do. I know it's terrible--I even know it's just plain incorrect: living in pain creates many shared experiences regardless of where anybody falls on the scale. That's often my visceral reaction and, as I said, it's wrong and probably mostly motivated by self-pity--but I feel like I'd be dishonest if I didn't admit feeling that way sometimes.

If you don't mind me asking, what sort of treatments have you had? From your poor opinion of migraine treatments and the trouble you've been having for so long, I don't know whether it's a result of you not responding to the many available treatments (as many of us do not--though I think that, in seeking professional treatment ourselves and immersing ourselves in communities and social groups such as this one, we sometimes get a biased view of the relative success of professional treatment) or whether you have not been exposed to some. I make no assumption in asking this--I just want to be sure that there isn't anything that you possibly have missed. I know you've had migraines for far longer than I, though I have been told by acclaimed treatment centers that I have been treated in every way that they can offer. So maybe, in this way I can contribute something to you--if a bit more humbly this time...

I sincerely wish you well (I swear I didn't used to be this irritable--sigh),
Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin

Post Edited (korbnep) : 2/10/2008 9:53:14 PM (GMT-7)


marylin
New Member


Date Joined Aug 2007
Total Posts : 15
   Posted 2/10/2008 10:51 PM (GMT -7)   

  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.


sarahswan
Regular Member


Date Joined Dec 2007
Total Posts : 57
   Posted 2/17/2008 11:23 AM (GMT -7)   
I didn't read through all of the posts btwn ben and marilyn, because it seemed to turn into more of a personal dialogue. I did want to point out one very important thing for others reading this, however. And that is though migraine is a disease there is NO ONE CURE because there is NO ONE CAUSE for migraines. The triggers and causes for migraines are so numerous, there isn't just one answer that would solve all migraineurs problems (as fun as that would be). Sorry to be blunt for those that are looking for a cure. You can still take control of your life when you're able to pinpoint your triggers, find a treatment plan that works for you, and make lifestyle changes to keep your  migraines under control (such as diabetes patients do).

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 2/18/2008 9:38 AM (GMT -7)   
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
DX: NDPH, Recovered CRPS
RX: Lamictal, Provigil, Clonazepam, Ambien CR, Emsam, Namenda, Oxycontin, Oxycodone
PRN: Haloperidol, Zyprexa, Lodine, Zofran, Skelaxin


mommb
New Member


Date Joined Feb 2008
Total Posts : 19
   Posted 2/19/2008 12:08 PM (GMT -7)   
ashley, my son has had the same migraine headache since dec. 1999. no relief what so ever. many many pain ctrs and drugs which have almost killed him twice now. we need to talk, please email me at (click on the envelope next to my name)
 
Edited to remove email address 

Post Edited By Moderator (tysmyboo) : 2/21/2008 1:36:57 AM (GMT-7)


miltmay33
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 2/20/2008 12:35 AM (GMT -7)   
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 yeah
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