Not your everyday run of the mill headache

By migraineur_n4dxbw

2 min read

My headache started, yes, I said headache only one. I have had the same one for nineteen years. It has not stopped, it has lessened at times but it is a constant one. It is difficult to remember a day when I did not have a headache and neither does my son for he was seven years old when I got my headache and he is now twenty-six.

I know how it started but cannot make it go away and neither can any of the numerous doctors I have seen. I did a drug study for the local University to check your CO2 absorption while on IV phentynol or morphine. I had to breath my own CO2 for five minutes every hour for an eight hour period. Something in that study clicked in my brain and gave me a headache. I know it was not the drugs for I have had both previously in surgeries and there were no side effects. I had a friend that did the same study and had a headache for a couple of days then it went away and I thought mine would too but it didn't.

So, nineteen years and several hundreds of dollars and various treatments and medications later, I still have my headache. With no end in sight. The latest diagnosis is Daily chronic headache with migraine tendencies.

I will have to live with this for the rest of my life. My insurance will not pay for another Botox injection but that doesn't matter for the others didn't work and I do not think another would either. My headache is tricky for it moves around my head but is mainly upfront. Sometime I wear it like a cap or down one side or behind an eye. I am so jealous of anyone that gets relief for an hour. Sure, I have learned to push it to the back of my head (forgive the pun) and go on and it looks as if I do not have a headache but I do. It doesn't do any good to complain. I just deal with it. Even on the bad days.

Thanks for lending an ear.
Christy Bell

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DonnaFA Member
Hi Christy Bell, thanks for sharing your story. I'm so sorry to hear about the onset of your headache. It's definitely not something you would expect from participating in a study! Please know that we're always here to listen and to share support. -All Best, Donna (Migraine.com team)
1. migraineur_n4dxbw Member
 Thank you, Donna. It always seems like the doctors don't believe you and try what they want. I want someone who can get rid of the headache not mask it. One day without pain would be very nice.
erickabass Member
I have had migraines also for 14 years on and off. This year has been especially bad for me, I am on day 45 this time. Since February of this year they have gotten so much worse they are lasting for weeks to months all the doctor says is they don't know what to do for me.I am hoping that soon something will work but so far nothing has helped at all. My headaches sound so similar to yours they shift all over but never go away just change in intensity I go to sleep with them and wake up with them. If you have any tips please let me know and maybe I might have some for you. Thanks for listening take care.
1. DonnaFA Member
 Hi Erika, I'm sorry to hear that your doctors are struggling to help. You may want to reach <a href="https://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/" target="_blank" rel="nofollow">Is It Time For a New Migraine Doctor?</a> to help you connect with a headache specialist in your area. We're sending all good wishes and keeping you in our thoughts. Please keep in touch. We're always here to share support or just to listen when you need a friendly ear. -All Best, Donna (Migraine.com team)
rosie-smiles Member
So sorry to hear of your difficult time. My experience was similar...I had 24/7/365 headache for years with frequent migraines. The migraines were indescribably miserable. I tried everything, according to the doctors. I had migraine surgery (nerve decompression on multiple spots around my head plus nasal surgery) earlier this year and it was a real life-changer. I am 100% migraine free, and my non-migraine headaches are so much better...less frequent and respond better to OTC meds if I have to take them...but I don't need to do that a whole lot anymore, and I am completely off of all RX meds. I don't want to be pushy, but just want to let you know about this highly successful option. I am so thankful that someone took the time to tell me about it. Let me know if you want more info!
1. rosie-smiles Member
 Christy Bell, I totally understand about being leery of surgery. I was, too. I first heard about migraine surgery in 2014, and earlier that year and I had TMJ surgery and sinus surgery a few months apart, and I thought I was done having surgery on my head...I figured there was lots of things I hadn't tried yet for migraine, so I wasn't going to be quick to jump into it. Long story short, I went to doctors and doctors and doctors and tried all the good options they had to offer me. After being told so many times things like, "I don't know what to do with you...you shouldn't be feeling like this and you're way too young to have chronic issues like this...I've tried everything on you I can think of" etc., I thought maybe migraine surgery would be a good option after all, if it was as successful as I had heard. So, last year I had a consult with this plastic surgeon in Bangor, Maine who is one of the pioneers in migraine surgery; and I had the migraine surgery in May of this year. It's was such a life-changer for me. I don't want to promote this surgery as a cure for everyone's headaches and migraines...I mean, what treatment does have a 100% success rate?!...but it surely was the answer for me. I believe it has a 90% success rate, and my surgeon said he's never had anyone get worse. Also, it didn't change my looks (not that I would have cared since I was so desperate for relief)--all the scars are well hidden. Literally nothing worked for me, except a pain killer that gave me temporary relief so I wouldn't have to go to the ER (now they aren't even allowed to prescribe that med anymore for chronic pain, at least in my state--which makes me all the more glad I got the surgery and don't need pain meds anymore). Essentially, the migraine surgery works by taking pressure off the nerves that trigger migraines. I got operated on in four zones, which is pretty much "the whole nine yards" but they don't necessarily do that much for everyone--it depends on what areas seem to be triggering your migraines. My pain was so wide-spread, I opted to get the whole works done at once and get it all over with. The areas they operate on are above the eyes (the scar is in the eyelid crease--this is somewhat similar to a cosmetic brow lift), the temples (the scar is hidden in the hair), the back of the head (the scar is also hidden within the hair line), and finally nasal (incisions are all inside the nose...this is somewhat similar to the surgery that ENT's do for sinusitis, but the focus in migraine surgery is eliminating nerve irritation, whereas sinus surgery it's more about sinus drainage). What they do with the nerve decompression is removing muscle (or anything else that is compressing the nerve--e.g. I had a nerve going through a bone above one eye so the dr. chiseled away some bone to take pressure of the nerve) from around the nerves above the eyes and at the back of the head and surrounding the nerve with fat to cushion it. The nerve they operate on in the temples is such a small nerve that they actually just cut it, rather than doing the thing where they remove muscle and surround it with fat, since that's your chewing muscle. As far as side effects, I don't know of anything negative that's permanent. The only thing is possibly some permanent numbness (as far as I know, that's rare and I don't think it would be a quality of life issue at all), but the feeling is usually back by six months or a year at the most. My forehead is slightly paralyzed, meaning I can't crease it if I try to frown...but I wouldn't say that's a problem...most people are glad to not have forehead wrinkles! 😀 The surgery was such an answer to prayer for me and the right treatment we were seeking for a long time. It's all about eliminating nerve irritation that would trigger a migraine. Does this answer your question? If you have questions, please feel free to ask; also if you want more information I can provide some links where it might make more sense than me trying to explain. 😀 Take care, Rosie
2. rosie-smiles Member
 Thanks, jcanchor...I wish that all migraine sufferers could get the relief that I have been able to get. I really hope that my story will be able to help someone else--that's why I share what worked for me. 😀
helenc Member
I think of mine as one long headache as well. I have had it for over ten years now. Sometimes it is worse than others and there have been times when it was curl-up-in-the-corner-and-cry awful. January of 2010 was pretty horrific and May of 2015 will never be forgotten. I actually lost 15 pounds that month. After that episode I found a neurologist that really helped and I have got a preventative routine that keeps me mostly normal most days. On top of the prescription stuff, I still wake up with a headache every day but a couple of aspirin are enough to mask it. I think morning headaches are because it has been so many hours since I have had any medication that the pain is starting to creep back in. I do take aspirin several times a day to mask it but that is a huge improvement and I can function like a normal person most of the time. Don’t talk to me about overuse headache. I don’t care. It is better than the alternative and there is no such thing as waiting it out. The headache doesn’t understand you are trying to get past the overuse and it never goes away. With my meds and regular aspirin I feel pretty normal so I will take the overuse addiction. I still have to avoid all my triggers and sometimes I feel so good I forget (or pretend like I don’t have this problem) and eat one anyway and quickly pay the price. Last week there was some life chaos and I missed two doses in a row. I paid with a couple of pretty bad days, so it is never really better and have to stay on top of it all the time no matter how close to normal I feel sometimes.
1. migraineur_n4dxbw Member
 I can't take aspirin or anything over the counter pain meds, they make it worse. I have learned to push it to the back of my head so to speak. Good luck to you.
djf4808 Member
Hi Christy, your story sounds just like my daughter's except she is only 18 years old. She has had a headache 24/7 for almost 4 years, good and bad days. Plus she has also has vertigo along with the headaches. Most people don't believe her illness as she too just powers through the. So far no treatments work and has been home from school for past 2 days. She has fallen numerous times and we don't know what is triggering these bad days. Any suggestions would very welcomed.
1. migraineur_n4dxbw Member
 I feel for your daughter and understand completely. I have tried almost every drug there is. I do know that the weather changes effect my headache. The barometric pressure intensifies my headache. This may be a trigger for your daughter. Think back on her bad days and see if it was stormy or not. I never get relief from the headache. I hope that your daughter can get some kind of relief
2. helenc Member
 Persevere. Find the right neurologist and pay attention to her body changes. What she is going through right now may be a function of her puberty. I am in a good phase of my headaches right now but am at the height of menopause. I am terrified that when it is over and I re-adjust the new hormones are going to require a new adjustment of medication and it is going to take years again to find the right levels. I don’t live in the same town anymore as the doctor that helped me find them last time. Each time we change we have to adjust and adapt and we change all the time. She is just finishing the biggest change of her life so hopefully something good may be on the horizon for her. For us it is always about experimentation, which really sucks.
not found
Hi Christy, I had to come online to search for your story. I didn't know there were others who had a constant headache, as well as migraines. I think you are correct in the origin of your headache. A seizure medication, not usually used for migraines, was and is a God-send for me. Don't give up! I'm praying for you.
1. Joanna Bodner Community Admin
 Hi jcanchor, Thanks for your comment and helping to share such great support. While you likely already have much information regarding daily persistent headache, in case these articles provided you with some information you may not have been aware of...I thought I'd pass along. <a href='https://migraine.com/blog/headache-that-never-ends' target='_blank'>https://migraine.com/blog/headache-that-never-ends/</a> <a href='https://migraine.com/blog/new-daily-persistent-headache' target='_blank'>https://migraine.com/blog/new-daily-persistent-headache/</a> Take care, Joanna (Migraine.com Team)
2. migraineur_n4dxbw Member
 I am taking seizure medication and it is not working as well as I would like. It just takes the edge off. Thanks for your suport
mariemitchell73 Member
Cristy Thank you for sharing your story. For over 4 weeks I have been having migraine after migraine. Some days I sit in total darkness. I am not really sure when the original migraine started. I have stomach migraines also. I think they started in the mid 1960s. My pediatrician was clueless, as at that time period most doctors were. I have my first neurologist appointment 12/20/16. I feel that my life has come to a complete halt. I can't even do activities of daily living. I think before I post anything more, I will wait until I see the neurologist. Thank you!!!!
1. Joanna Bodner Community Admin
 We are here for you MarieMitchell73! I am so sorry you have been experiencing such tremendous pain these past few weeks. This must be so terribly hard to endure. I am very happy to hear that you have an appointment scheduled. Since this is your first appointment with your the Neuro, maybe <a href="https://migraine.com/getting-help/prepare-docto-visit/" rel="nofollow">this article regarding preparing for your visit</a> would be helpful to review. Additionally, in the meantime...here are some tips the community has provided on how they <a href="https://migraine.com/blog/community-responses-what-are-your-go-to-techniques-that-bring-you-comfort/" rel="nofollow">ease the pain</a>. Stop by after your appointment if you can & let us know how it goes. Please feel free to ALWAYS reach out for support. Thinking of you, Joanna (Migraine.com Team)
2. migraineur_n4dxbw Member
 Good idea to see a doctor. I see a neurologist that specializes in headaches. That would be a good way to start. Good luck!
rightsideheadpain Member
I am a "newbie" who knows very little. I just found this site and signed up. I am experiencing my first migraine and attempting to help it with my usual headache medicine, vitimin I (ibuprofen) and caffeine. I have been having low grade headaches for 20 years and always wondered what a migraine felt like because my brother has suffered for decades with them. I feel this is a migraine because the intensity of the pain on my right side and my usual cure isn't working. Any suggestions for this newbie who is about to get up and go to work. I work with 3rd-5th graders which could give most people a headache just thinking about it. My first migraine should be interesting on the job. I will pray for patience, relief, and well behaved children. HELP...I will take any suggestions seriously. What was your maiden migraine experience like? HHeellpp (56 year old male)
1. migraineur_n4dxbw Member
 It has been so long since my first onset headache that I do not remember what it was like. I've been like this for over 19 years. Somehow I have learned to push this headache to the back of my head and try not to dwell on it. I am not sure how I did this. I guess survival skills set in. I have to keep going on no matter what. I cannot just sit in a dark room and sleep even if that is what my head is telling me that is what it wants. There are days that it is really bad and I cannot ignore it and those days I usually try to take a nap for a few minutes to help it calm down a bit for no meds actually take it away they mask it, take the edge off. I hope you can get some relief and well behaved children. Perhaps lots of activities with quiet time in them will help at work. Reading is good and teaching them about inside voices. Good luck and maybe some meds will work for you. Try some seizure meds, ask your doctor first. Topiramate is one I use.
2. observer Member
 .....hi there, I'm male aged 67 with a 60 severe chronic migraine history...just a couple of points that may help: about 10 years ago I was checked out for a hole in the heart (PFO), a large one was found and duly patched, severe headache and sickness stopped...attacks changed to more than 20 a month! Five years ago I was operated on and an Occipital Nerve Stimulator inserted....has helped a lot but needed readjustment recently. Candesarten at 32mg daily helps too. Life is much more bearable than it was but I was advised by the london neuro hospital to take 900mg aspirin at first sign of attack, has helped a lot and reduced Imigran/omitted usage enormously..hope this can help someone...
lisaone Member
I hear your pain. I get a migraine with aura and vomiting. Lights hurt during this and it lasts 3days. Now I get one on and behind my eye, I'm OK for 1day then it goes to the other side behind my other eye. This means 6days out of the week I'm in bed. Difficult to work, I have to call off and after a few call offs I'm fired. Disability turned me down. I take vitamins b2 magnesium and maxalt when I feel migraine starting.very little relief. I live in fear of when the next migraine will hit. I go to work then another one hits and I lost another job I've tried staying at work but the pain and unable to see out of the eye makes it impossible I tried notice but it wears off on 6 weeks and then the migraine hits and even more painful. I can't stand this anymore. I never have enough money. I don't know what to do.
lisaone Member
I meant I tried botox
1. migraineur_n4dxbw Member
 I have tried Botox twice and both times it did not work for me. It might for others but since I believe that my headache is not in the muscles and is inside the brain, it will not work. Most of the time I believe it will work for people if they have headaches in the muscles of their heads. My headache was caused by a drug study and the way the study was conducted. Something clicked inside my brain and it is causing this pain and no one can seem to figure out what it is or how to get rid of it. Some doctors do not believe me that it is not in the muscles of my head. I'm at the point now that I will just have to live with the headache the rest of my life and get cover meds to deal with it.
lisaone Member
I'm new here and I'm glad to see so many people trying to help.can anymore tell me about the surgery for migraines I think it might be my last hope. I appreciate all your help.
1. DonnaFA Member
 Hi Lisaone, we're glad you found us! There are a few types of <a href="https://migraine.com/?s=surgery&submit=Go" target="_blank" rel="nofollow">surgical intervention</a> that you may be interested in reading. I hope you find something of use in them. Thanks for joining the community and the conversation! -All Best, Donna (Migraine.com team)
2. rosie-smiles Member
 Hi Lisaone, I feel your pain--I had chronic intractable migraine. I was sick with migraines more often than not, and sometimes just praying to die. I was out of options, except for migraine surgery. It totally changed my life!!! I am 100% migraine free. I posted a long comment on this page a few weeks ago with a lot of details about migraine surgery--did you happen to see that? I can give you more information about surgery; please ask if you have questions. I can also provide some links for more information. I don't know where you live, but I can recommend an absolutely wonderful surgeon in Bangor, Maine. I'll be happy to provide more information or answer questions--feel free to ask if you have specific questions! Take care, Rosie 😀
maferueda Member
Christy, I'm sorry you're going through this. My situation is similar to yours but I already had the surgeries cutting the nerves and hiding them deeper, and did not work at all. So don't risk much if it's not covered by your insurance bc it's not always effective. I also failed like you botox and every medication. However, I'd like to suggest if you could try to breath on oxygen by cannula. Ask your Doctor if he could help you to get a temporary one ( getting it is the problem) . Sometimes it helps me. Just 10-15 min ocassoonally, when you feel you're worsening. Wish you very Good luck
maferueda Member
Christy, I'm sorry you're going through this. My situation is similar to yours but I already had the surgeries cutting the nerves and hiding them deeper, and did not work at all. So don't risk much if it's not covered by your insurance bc it's not always effective. I also failed like you botox and every medication. However, I'd like to suggest if you could try to breath on oxygen by cannula. Ask your Doctor if he could help you to get a temporary one ( getting it is the problem) . Sometimes it helps me. Just 10-15 min ocassoonally, when you feel you're worsening. Wish you luck
1. rosie-smiles Member
 Hello, cutmyhead, and others thinking about migraine surgery, I just wanted to point out that there are different kinds of surgery. Different doctors do things differently and just because migraine surgery isn't 100% successful, doesn't mean that it's a bad option. I mean, what treatment for migraines or anything is 100% successful?! I had nerve decompression where the nerves above my eyes and at the back of my head were decompressed (muscle surrounding the nerve was removed, and at one place bone that was compressing a nerve was chiseled away; and the nerves were surrounded with fat to cushion them), and the only nerve that was actually cut was the one in my temples...but even in that area my feeling has mostly come back (it's been 7 months since my surgery, and by a year my feeling should be 100% back, but it's almost all back now). I also had nasal surgery as part of migraine surgery, which is somewhat similar to what ENT's do for sinusitis, but in migraine surgery they focus on eliminating nerve irritation; while in sinus surgery they focus on sinus drainage (I also had sinus surgery for chronic sinusitis). My migraine surgery was not covered by insurance, but it was worth the risk. My doctor has a 90% success rate with this procedure. It was a pretty penny, but absolutely worth it--it gave me a life again. I am completely migraine free! We are still fighting it out with insurance because it really should be covered, and we are in the process of getting an independent external review since we feel it is not right that it was denied. ~Rosie 😀
2. migraineur_n4dxbw Member
 Cutmyhead, I tried oxygen several years ago as well and it didn't do much but there is a chance I might have to go on it for other reasons. I now have asthma and pneumonia in my right middle lobe or it looks like it. I go in for a CT scan on the 28th of this month to see if there has been a change and then a bronchoscopy at the first of the new year for none of the medicines are working on it. I have now become over weight and that doesn't help matters and puts extra stress on me because I cannot work out because I can't breath and it makes my head pound even more. It is a viscous cycle. To top it off I now have allergies that make me cough. Some days I feel as if this whole thing is a lost cause. If it weren't for that cute little grandson, I don't know where I'd be and my loving husband who has been a rock through all of this for the past 12 years. I am a mess right now as far as my health is concerned. But thank you for the thought, nothing seems to work n me for anything. Merry Christmas to all