hello everyone!
i havent been doing too well recently. my head pain has been up for a while now. last night i was laying in bed for 3 hours trying to fall asleep. even after 2 oxycodone, ice, heat, and laying in the dark i had no relief. today was also pretty rough, but im doing a little bit better now. i feel that if i keep myself distracted it helps. today i got my learner's permit and majorly cleaned my room and took a long hot shower. i think the distractions and the 1 oxycodone i took today helped relieved some of the pain. im still not at my usual 6, but its better then the 10 i was at!
Update: i started taking topamax (for my second try) about 3 weeks ago, but i already have to go off of it. im having the same side effects as before and its not working. im having a lot of chest tightness and tingling in my hands and feet. i am currently taking 30mg of nortriptyline, 25 mg of topamax, yaz, valtrax (for coldsores), and melatonin all at night plus whatever advil or oxycodone i need. i try to avoid oxycodone as much as possible, but sometimes the pain is too much and i have to. i start off with one and that usually does the trick.
once i am off the topamax, im going to start taking magnesium. we are thinking about taking me off the nortriptyline too.
on july 15th, i will have suffered constant head pain (no relief, no breaks, not even a day without pain) for 2 years. its hard to think about, but its the people around me and the people on this site that keep me going. it has made me stronger knowing that im not alone and that i have also given others a place where they can talk about what they are going through. please keep it up, i really appreciate all of you.
i had a lady today ask me how i was and i lied and said, "im okay" and my mom was like dont lie and looked at the lady and said, "shes not good." the lady looked at me and said, "you always have a smile on your face. i dont know how you do it. i hope the doctors can figure something out."
anybody have any more recent updates? maybe you had a good day today? bad day? more stress that you need to release? recent doctor's appointments? starting a new medicine? keep us updated!-------headpain19
I've had a constant headache, all day every day, for the last 13 weeks straight now, and it's driving me nuts; I don't know how you've managed to put up with it for so long. I wouldn't wish this sort of thing on my worst enemy, so I all I can do is hope that yours (and mine) will eventually go away. Normally, my pain is around the 5 to 6 out of 10 mark, which is incredibly irritating, but manageable; but it occasionally ramps up to a 9, at which point I have to go and lie down in a dark room and attempt to sleep it back down to my usual 5 to 6. Over the counter medications have been totally ineffective at getting rid of the headache completely, although they are occasionally, when the pain gets really bad, able to reduce the pain back to my normal levels.
Over the last 13 weeks, ever since flying back from holiday on the 13th of April, I've lost count of the number of times I've been to my doctor. At first it was thought to be migraines, and I was given Imigran for that, but if anything they made them slightly worse. Then it was thought to be Occipital Neuralgia, and it was suggested that I try anti-inflammatories, a heat pack on my neck, and improving my posture during the long hours I spend in front of the computer. Only the heat pack gave any relief at all, although never completely getting rid of the headache, but within about half an hour of removing the heat from my neck, the pain started to ramp up again. Then it was thought to be inflammed sinus passages, so I was prescribed a nasal spray for that, which has also been ineffective in treating the headaches (although it has helped me breathe more easily through my nose during the night). After all those failures, they sent me for a CATscan on my brain and sinuses which came back completely normal. And just today they suggested it might be a chemical imbalance in the brain, and prescribed me Lexapro, but I haven't taken any yet so it's yet to be determined whether or not this will work. I'm also on a waiting list for an appointment with a Neurologist.
i have been on lexapro before. obviously it didnt work for me since i still have the headache, but its definitely worth a try. your pain level is the same as mine. everyday im at a 6 on a scale of 1-10, with the occasional jumps to a 9 or 10. i havent been below a 6 in months if not a year. When i get to a 9 or 10, i usually take an oxycodone and if im home i lie down with ice on my head and sometimes try sleeping. that works once in a while and brings it down to a 6 again. if im not home then i still take an oxycodone, but continue doing whatever im doing unless i cant fight it anymore.
i hope the neurologists or your other doctors can figure out whats going on with you. just stay strong and keep posting
Hello there. I also suffer from constant chronic headaches that nobody can figure out why. I was just recently dx with hypothyroidism and apparently 1 of the symptoms is heaches. I also found a mass on the right side of my thyroid which causes my neck to hurt. When my neck has a "spasm" as i like to call it my headaches intense horribly and i can actually feel the veins in my head pulsating. I have thyroid sx coming up soon and was told that the heaches should get better, but i know how you feel. You never feel like doing much because your head is killing you. I've taken so much meds for heached i'm surprised my liver hasn't exploded by now, i feel your pain and i'm only 32. Just for s&g have your thyroid checked, you could be surprised. Good luck.
Wow, i'm sorry to hear that. that sounds really intense. i hope you can get rid of the pain or at least ease it up some. my thyroid has been checked before i think, so that's not my answer, but at least you have an answer. the doctors have no idea what mine is or caused by. they are just treating the symptoms for me. no luck so far. all i know is our next step is an appointment at some philidelphia headaches institute, but everything they do will probably just be based on symptoms too. i don't know we will have to see.
im getting ready for vacation, so i may not post for a while, but i will do my best. keep posting and good luck!
Sometimes headaches and burning sensations at the top of the head can be caused by overexposure to spiritual practices such as yoga, meditation, binaural beats, hypnosis, etc, or they can be brought on by certain traumatic experiences. In this type of headaches, CT and MRI scans won't reveal anything and doctors will be puzzled because they won't find any physical cause.
These headaches are usually aggravated by any activities involving mental concentration (reading, writing, watching TV), stress, negative thoughts and emotions, etc. They are non-responsive to pain-killers and / or other medication. They can be a vicious circle because the worse they become, the more stress they cause, which, in turn, makes them worse. Sometimes, they respond to alternative treatment, such as acupuncture, other times, they don't.
If anybody in this thread can identify with this, you are not alone. There are many people suffering from these types of headaches (including myself). Here are a few suggestions that have helped me and others to cope with it, get rid of it or at least make it manageable:
- cutting down on any activities that require mental concentration (heavy reading, writing, studying, watching TV, etc)
- performing light physical activities such as housework, knitting, easy gardening, easy exercise
- taking long walks
- spending much time in nature
- a healthy diet
- avoiding caffeine , alcohol and tobacco
- resolving all conflicts and tensions in your life
- avoiding negative thoughts and grudges
- laughing wholeheartedly
- crying when you feel like it
- making peace with yourself
If religious, going to church and praying might help. Do everything in moderation.
Sometimes having a pet can help. Focusing on other people's needs and on feelings such as love and compassion can also help tremendously.
I am not saying that following these suggestions will clear any headaches. But there are types of headaches (especially the ones at the top of the head) that only respond to a radical change in lifestyle. If you have tried everything else and nothing works, it's worth giving it a try. You have nothing to lose, only to gain.
Have you ever been given morphine or pednisone for it? if so, does either work if only for a short time? Have you seen a REAL headache specialists for it? Have they ruled out all your internal organs and the physical you? have you tried hypnotism? Have you tried more than one specialists? The fact that you can semi function is actually rather interesting. Do you take any antidepressants? Have you changed your diet around? had allergy tests run? have an air cleaner in your house? have fresh air coming in, no matter how hot or cold it is, had your house or place you leave checked out and and ruled out as a cause? When did it start, any unusual event occur with it? cancer and tumors have been ruled out? I take it you have had a spinal block and that didn't relieve it even for a short period and that sinus issues were ruled out? where exactly on the head does it hurt, does huffy straight oxygen help or worsen the issue? Does altitude change do anything, closer to the ocean or far far away? Is it worse in one location, as in at home, than another, as in a doctors office? Have you been given antibiotics in the course of the attempt to treat it? Do you have any Gastrointestinal issues? Heart issues, Have you had multiple doctors give multiple MRI's and CT scans? and you seen a doctor for allergies and had all the allergy issues ruled out? Do you watch a lot of TV?, do you leave near an industrial zone? Low frequency vibrations can cause headache, since you don't hear it, you're not going to know it is there.. fluorescent lights can cause headaches.. If you have hyper nerve endings.. Is the top of your head, basically your head sensitive to touch, I mean, you brush your hair, or even just wash your hair or let water hit it and your head hurts worse.. I can't function with a headache, I suffered with chronic headaches that lasted 20 years, no, they were not constant.. but can be triggered and sustained by the weirdest things.. If your doctor cant figure it out, find another one till one does, not everyone knows, and sometimes not a lot of them know.. they are not magicians, they do their best and some are seem like quacks, like they don't care nor want to be bothered and that makes you to get frustrated.. What types of meds do you take? whether they were prescribed for headache or not? How many doctors have you seen no matter what their specialties are...
I truly understand what you are going through. I have been having headaches for the last 6 months. I have them in my left temple. I go to bed with it and I wake up with it. Most days I have a headache all day. I stay very tired and I get dizzy at times. When they are very bad I am usually in the bed for 2 days. I know I have a lot on my plate but it is not stress. I have been to doctor after doctor and taken pill after pill and nothing is working. I just found on Monday from one of my test that my vitamin D level is very low and my white blood count is down. Not sure if that is part of the problem. I will be doing a MRI on the 17th of this month. So please don't feel like you are alone. I know the pain you are going through.Hang in there it will get better for both of us soon. I will keep you in my prayer.
thank you so much babygirll. i hope they find something that will help on the MRI.
66Brian- i have done everything you mentioned except hypnotism. that was the one thing i havent tried.
update: not much to say. we are planning on making an appointment for Philidelphia because i will finally be old enough to be seen there. otherwise, everything else has been the same. still have the headache day and night. still at a constant 6 or 7. still have no diagnosis. still have no solutions to get rid of it. still going through everday as if normal.
I've been going through something similar for 4 months now. When the doctors mention my "headaches" I correct them and say that it's been one continuous headache.
I get about 4-5 hours of sleep each night until the pain wakes me up. Then I just stare at the ceiling until the alarm goes off. My headache started during allergy season, so I chalked it up to that at first.
In the last couple of months, I've had CT scans, MRI's and blood tests. They've finally located some white matter lesions in my brain from an MRI and I just had a lumbar puncture so they can test for MS and menningitis and a whole bunch of other stuff. I've also had blood send to the CDC to see if I might have Lyme disease. It seems they just don't know and they are in no hurry to find out.
I'm at the end of my rope at 4 months, and I can't imagine how you feel after almost2 years. You are really strong. I've had days after so little sleep that I just sit at work and surf the net trying to figure out what is going on.
Good luck to you. I hope my tests come back with my answer and you get your answer, too. And that we both stop having headaches.
Hi, I'm new here. I am sorry to hear that you NEVER have relief from it! I can't imagine! I have had headaches for years that probably turned into daily chronic tension headaches for the last couple years. It all happened gradually. I have a headache most of the time - sometimes mild, like when the meds kick in or after a massage, most of the time medium, like a 6 or so, sometimes bad where I have to lay down and try to go to sleep (but not a migraine). I know that I have a buldging disk in my neck that is probably the cause, but there's not really a cure.
My other problem (perhaps bigger problem?) is that I am suffering from rebound headaches which is caused from medication overuse. Almost all abortive meds cause it. My med of choice is Butalbital. It works great, but now I'm taking it everyday and need more and more of it. I'm now taking 2 a day, but I need more and don't want to take more, so I suffer for the rest of the day. Now the doc says that this is causing me to have a headache everyday, and I will need to take more and more of it as time goes on, and at some point soon will have to get off of it to resolve the problem. The problem with stopping the meds is that the body craves the med and the headache gets a lot worse until the med is out of your system. Problem is I still need to function at work.
I am on Amitriptyline as a headache preventative, which only works a little and causes weight gain (hate that). I could deal with that if it worked better, but it's not worth it. She is switching me to Topamax (I know you've tried it), if that doesn't work, then trigger point injections, if that doesn't work, then botox injections. Are trigger point injections different from nerve blocks?
It drives me crazy to almost ALWAYS have a headache with very little relief, and it keeps getting worse! I know, it's hard to do the things you have to do and enjoy life. So far, I have really good friends who are supporting me, but they don't really know what it's like. I find that most people know what it's like to have a headache and I just nicely tell them to imagine that they have that constantly.
Anyway, I'm wondering how many meds you're taking to stop the headaches and if you're possibly getting rebound headaches? That cycle can go on forever until you can stop all the meds. A good doctor can help with that though, if that's even part of the problem.
This is a great board. I even did a search to see if there were any headache support groups in my area and found nothing, so this is all I've got.
Best wishes
Last edited by stopheadpain; 08-22-2010 at 07:54 PM.
Hey there, has the Neurolgist sent you for a MRI or Catscan? If not please consider doing so! I had headaces like that for almost a year or more and go to find out i had a non-cancerious tumor growing on an artery in my brain which i had removed with a un-succesfull surgry but got it removed with Radiation treatments but still have the headaces but not very often as i was. Not to scare you or anything but its worth checking into it dont you think? I hope this helps hun, Best of luck!
im sorry to hear about your head problems. i dont know if trigger point injections are the same as nerve blocks. i dont see how i could have rebound headaches even though im constantly taking medicine. i dont know how i would tell either since i always have a headache. its not a go away and come back kinda thing. its a wake up in the morning, do everything with it, and then go back to bed with it. im sorry that you couldnt find a support group in the area, but you are more than welcome on here. feel free to update us or just talk your stress out on here. i know starting this thread has helped me a lot and its wonderful how many suggestions and idea the people on here have to offer. i dont really have anybody who can understand this headache and i have no support from friends. thankfully my parents are wonderful and my boyfriend of almost a year is finally starting to understand the pain i go through every day.
update: i feel like things have gotten rougher recently. i just started school monday and i already feel the stress piling on. nights have also been pretty bad for me. whether its the headache, or just something else i am having trouble sleeping. we have made an appointment for a headache institute in philidelphia. i have to wait until november and i dont know if its going to be a success or a bust. it will be a 4-6 hour appointment. thats all i really know. right now i am only taking valtrax for coldsores, yaz (which im switching off in about 2 weeks) and melatonin to sleep. recently, the headache has stayed at a good 6 1/2-7. i try to avoid oxycodone as much as i can, but if it gets bad to the point where i cant fight it then i need to take it. im just really tired of having the headache. i have been more depressed, but trying to not show it. nothing more to really update. just that im stressed and depressed a lot lately.
how is everyone else doing? still chugging along and living life to the fullest? any updates to report?--------------headpain19.
Since I started taking the Lexapro about 7 weeks ago (as well as exercising for at least half an hour every single day in that time), my headaches seem to have improved slightly. It's not all day every day any more; although having said that, I do still get one more days in the week than not. It used to be that over the counter pain killers did virtually nothing for my sore head; but I've noticed that on the Lexapro, pain killers are more effective. That's my update for now.
Hey girl Im glad your still staying strong and hope that the sleep study will find some asnwers for you! On my side of things,i still only sleep about 6hrs tossing and turning as usual lol and my headaces are around every other day of so but managable so far but keep us updated on whats up hun. Best of days and keep charging ahead.
ive tried lexapro before, but it didnt work for me. im glad you are having some success on it though.
RANDOL, are you taking any kind of sleeping medication or have you tried any? i had trouble sleeping too, but i take melatonin now and its helped a lot.
update: today was horrible! on a scale of 1-10, i was at a full-blown 10 from about 12-4:15ish. Meanwhile, im in school until 2:15 which was super stressful. it came to the point after school when my boyfriend and i were walking in the hallway and i just broke down into tears. it hurt so bad. he was wonderful about it. he stopped and hugged me tight and just let me cry. hes finally understanding that im in pain all the time and even though he has no idea what i go through, he still cares and just lets me do what i need to do. i had to come home and take an oxycodone and with his help i pushed through my homework. thank god for people like him. and everyone on here that i can just talk to and get ideas from. thank you so much everyone.
p.s.-tomorrow, my boyfriend and i will have been together for one year!
Hey hope all is better today with your pain scale hun! Ive never really taken anything for my sleeping problems except Ibuprofin or a straight shot of hard liqure every-so-often lol but ive somewhat adjusted to how my sleep habbits have been. I know that sounds kind of like ive given up on knowing why i toss and turn every night but at least i do get enough sleep to get me thru the day lol. I seriously think you should push the issue to have a Nureoligst check you out and get to the bottom of your headace problem hun,why suffer any longer,you know what i mean? Well get at me any time and keep me updated sweeti, take care
Headpain - I just wanted to say HI. I don't have any wonderful advice to offer you, but keep trying to find the answer. I have chronic severe pain in my neck and shoulder/arm and I know what it's like to have pain all day every day. Sometimes it stops me in my tracks. It took a long time for my husband to fully comprehend what had happened to me. After about a month after my pain issues started, I had to sit him down and told him that this was very serious, and he needed to understand that my life had changed and I needed him to adjust to that. After I told him that he changed his attitude completely. sometimes I can tell he's bothered because there is nothing he can do for my pain. He just has to sit there and know that I am suffering terribly and he can't do anything about it. I'm relatively young too and would have never expected something like this to happen to me. I've been in pain for about 36 months now. I sortof know what's wrong with me but I still haven't found out the major cause. I'm still enduring tests and scans and nerve blocks and injections, etc, etc, etc. You know the drill.
Eventually I just started doing normal things because if I stayed at home and did nothing, my mind was 100% in my pain. If I went to the grocery store, at least then about 30% of my mind was at the grocery store and not in my pain. My mind will never be 100% at the grocery store anymore, but diverting 30% of my mind to something else is better than nothing.
