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living with never ending headaches

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Posted 2/27/2010 3:45 PM (GMT -7)
This might be hard for some of you to believe but I don’t remember what it’s like to not have a headache. I’ve had constant headaches since I was a **** and until recently I actually believed it was normal.

Seriously I had no idea having a headache all the time was out of the ordinary. It was just a constant in my life. I’d wake up and go to bed with a headache. During the course of the day that headache will go from mild to moderate to mild to moderate etc and occasionally every now and then will throw in a severe for good luck. To me a headache is ‘just a headache’ something people are supposed to live with and, with the exception of the severe ones, I never really understood why people complained about them so much.

Then problems with vertigo and my left ear landed me in the office of an ENT doctor. She seemed almost horrified at the idea I suffered from constant headaches, and told me to go get my eyes tested (this was also to rule out my eyes as a cause for my vertigo). For the first time in my life, despite having made the remark to people before that ‘I always have a headache’ I actually started talking to people about my headaches. I couldn’t believe peoples’ reactions when they realised my seemingly off the cuff remark was true. I had more than a few ‘I wouldn’t be able to stand that’ remarks to which I always replied ‘but I don’t know anything else, if you don’t know anything else then it is just what it is, normal’.

Anyway I checked out all clear in the ENT and was shifted onto Neurology. After three months of waiting (and a rather annoying moving of my appointment without letting me know) I finally saw the specialist. I’ve been given a preliminary diagnosis of Chronic Daily Headaches. I have to wait for my notes to be passed back to my GP before I can discuss what will happen next, but I was just glad to know I’m not the only one out there living with these kinds of headaches. Okay so maybe it’s not normal, but at least I’m not alone.
Posted 3/1/2010 9:43 AM (GMT -7)

You are definitely not alone. I too suffer from Chronic Daily Headaches with the added bonus of Migraines. Much like your situation, I wake up with the pain and go to sleep with it. The MDs have found no underlying disease to cause the headaches or migraines, and the testing has been extensive not to mention expensive. I really wish you luck in finding a solution to your pain. Living in pain is no way for you or those around you to live. While we have suffered daily forever, a normal thing for us and others like us, it has actually taken a toll on many lives. I know my kids would have a different life if the constant pain didn't stop me from living life to it's fullest. That being said, I have been on a quest to improve mine and my families lives by alleviating my constant pain.

 

 With all of the testing, and medication trials, it is all to no avail (at this point), I sit here typing a response to you with a banger. My GP has tried several different meds to prevent the headaches over the years, Topamax (for migraines) was horrible for me. I was a total Zombie for 2 months. Next came Steroids, they made me hyper, break out with pimples like I was a teenager, oh yes, and get fat as a tick. Along with the steroids, I was given a beta blocker to stay the pain, and Ultram to kill the pain, that was until I started getting very ill from the meds. I came off all of that, because the steroids stopped my birth control from working, and I found out I was pregnant. I went almost 3 years without any treatment (pregnancy and breastfeeding until 19 months) So now my doc thinks these daily chronic headaches are caused from tension. My GP has had me on Zanax (anti anxiety), Baclofen (non-narcotic muscle relaxer), for about 8 months. The headaches have not subsided, so now he has added Cymbalta (anti depressant) and percocet, for when I just can't handle the pain any more, along with the Zanax and Baclofen. I am in my 3rd week of the Cymbalta and percocet. He had me on 30mg of Cymbalta for a week and bumped me up to 60mg for the last 2 weeks, so far I have some yucky side effects like diarrhea, gas, bloating and a little nausea that seems to loom at a low level all day long, but no headache relief yet. I have read in many posts or blogs that this is common and the side effects can go away and in the long run (up to 8 weeks) Cymbalta has helped many with Chronic Daily Headaches. I pray that I am one of them.

 

I don't know if any of this info could help anyone else, except to let you know that there are others, many of them that are in your same boat. If and when I find a solution, and all the steps in between, I will be back here to see others ideas, attempts and hopefully solutions! Best of luck to you!

Post Edited (plumkatie) : 3/1/2010 10:21:09 AM (GMT-7)

Posted 3/6/2010 9:05 AM (GMT -7)
I too have had a headache for as long as I can remember. It is there everyday usually a 2 on the pain scale and then I get migraines on top of it all. I was always focused on the headache and never really complained to the docs about everything else hurting until July of last year when I got a migraine that lasted a month and a half. My whole body ached so bad along with it I felt like I had been poisened and was dying. I went through several doctors and all the specialists until I was diagnosed with chronic daily headaches, migraines with and without aura and fibromyalgia. I am now on medication that finally has given me some relief. The first day that I was almost pain free (minor headache and body aches) was when I realized I couldn't remember ever feeling like that, I didn't know what it was like to be almost pain free, it was wierd :) I am thankful I finally got diagnosed and can now take the right medications to live my life. I still have flares and some really bad days, but at least I get to have some good days too! Take care and hang in there.
Gentle Hugs,

Shannon

 

Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety

Oxycontin, Lopressor, Lexapro, Famotidine, and Promethazine as needed for nausea from migraines

Posted 3/12/2010 1:31 PM (GMT -7)
I don't suffer from daily headaches but I do get them frequently (usually averages out to about 2-4 every 7 to 10 days) and have never been able to fully account for why or what causes them. They tend to settle in about 2 or 3 hours after I've been awake and get progressively worse throughout the day. The thing with these headaches is that they are generally accompanied by nausea (?). I've asked just about everyone I know if they get nausea with their headaches and it seem as though this is not a common side-effect. Sleep is generally the best thing I've found - I always wake up and the headache is gone, but falling asleep when you feel nauseous isn't exactly easy rolleyes This is all compounded by my tinnitus. I use a fan or the tv or I also have a couple different white noise machines I use as well to combat the difficulty in falling asleep and I've found it actually works. So now when I get my headaches I use the various sleep aids and I get some relief. I've tried many things, some illegal even, and nothing has ever provided me with immediate, effective headache relief.
Posted 3/24/2010 1:33 AM (GMT -7)
I also have chronic daily headaches, and have dealt with them for the past 4 years. The Doc's have diagnosed me with everything from cluster headaches to migraines and any other headache you can imagine. I spent 3 1/2 years bouncing between neurologists and headache specialists without much relief. Without meds my pain level stays around an 8. I finally found some relief in pain management. We've been through a truck load of different meds and finally had to go with ( Percocet, Methadone....), changing every 2 weeks or a month because my tolerence is so high. Maybe your place is in pain management as well. Unfortunately, even with these strong meds, my pain level stays around a 5.
Posted 3/25/2010 6:48 AM (GMT -7)
hi golden,

i too have vertigo and problems with my ears, namely progressive hearing loss. i was just diagnosed with meniere's disease in addition to migraine. i had been to 5 ent's before i got the right diagnosis. there is also migraine associated vertigo MAV, you might want to check out.

what is your vertigo like and what is your problem with your ear? tinnitus (ie ringing)?
Posted 5/16/2012 3:18 PM (GMT -7)
I too, don't remember waking up with no headache, my headaches go from mild to moderate most days back and forth and then sometimes extreme, then back to moderate.  the extreme seem not to last as long but come often.  ANy advice from someone who is also battling them would be helpful.  It has been at least 10 years.....

 

Posted 8/2/2012 1:05 PM (GMT -7)
I also wake up most days with headaches. I feel that most of my problems stem from my sinuses. I've had two surgeries on my nose to fix it but neither of them helped. I also have headaches most days somedays they are migraines. I've passed out three times with my migraines.
Posted 8/6/2012 6:17 AM (GMT -7)
i have been having mirgaines at least 2 times a day sometimes more for the past month. the pain is unbearable. i feel like im going into shock. i throw up, cant get any relief and if i was a suicidal person the pain would have caused me to end it already. i cant take the pain anymore. what is wrong with me? its only on the right side of my head and it feels like my head is on fire, and i can feel sharp, throbbing pain pulsing from the back of my neck all the way to my eye. i need some help. anyone please.
Posted 8/11/2012 11:38 AM (GMT -7)
ILAGolden, you are definitely not alone! I have had chronic daily headaches (which technically doesn't mean every day, but rather 15 days a month) for half my life and pretty much daily headaches for the last few years, with 2-3 migraines per week. Like the others here, I just take it as a part of life; I'm always amazed by people who have one or two headaches a year.

My headaches got so bad in recent months that I think I started to get rebound headaches from overmedicating, so, after 16 years of self-medicating, I finally saw a neurologist and am beginning a real medication regime with topamax as prevention and maxalt-mlt for migraine treatment, although she says she may switch me to gabapentin in a few months (to replace the topamax) because I also have sleep issues. I know people have varying opinions on topamax and I haven't been on it very long (< 2 weeks), but I have noticed an improvement so far in the intensity of my daily headaches, and I've only had to take migraine medicine twice in those 11 days.

The most important thing to do is try to figure out if you have triggers or what makes your symptoms worse. I've been known to wear sunglasses in my office because I can get extremely sensitive to light. Exercise always makes my headaches worse, so I'll take something before working out.

somuchpainhelp, you should make an appointment with your doctor immediately or, if you're having an episode and the pain is that bad, go to the ER. It may just be nasty migraines and you can get medication for them, but you should definitely get it checked out.

Post Edited (vitaka) : 8/11/2012 12:42:27 PM (GMT-6)

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