Does anyone have Hemicrania Continua migraine headaches?

Posted by keithtombs @keithtombs, Sep 3, 2012

Hi all. where do I start. i have had a 24/7 migraine/headache for a decade now. I have just started using a tricyclic to "dampen" its severity and so far it has helped me get my ibuprofen use down from 3 to 6 doses a day to one or two doses.i am upset with all doctors i see here in Australia who continue to call it migraine when it seems more like hemicrania continua. But all of them dismiss me when i ask them if it could be this and say the treatment is the same.does anyone else here experience a 24/7 migraine like headache?by the way... upon starting the tricyclic i have started to experience real aura migraines about once a month... this truly tells me the 24/7 headache is not actually migraine!

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Hello, @gfisher100 -- I moved your post over to this discussion where you can connect with other members more recently discussing migraines, like @skk15 and @johnbishop, plus meet @headacheallthetime @mouser and @keithtombs. I also wanted you to meet @jlfisher56 @staci @jupiterkaren @taterjoy @gailb and @kdubois in case they may have insights for you on migraines and potential relief for them. Hoping you can all meet up here on this thread.

gfisher100 -- I'm guessing you may be thinking of CBD oil? Have you had migraines for some time, or is this a new diagnosis?

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@lisalucier

Hello, @gfisher100 -- I moved your post over to this discussion where you can connect with other members more recently discussing migraines, like @skk15 and @johnbishop, plus meet @headacheallthetime @mouser and @keithtombs. I also wanted you to meet @jlfisher56 @staci @jupiterkaren @taterjoy @gailb and @kdubois in case they may have insights for you on migraines and potential relief for them. Hoping you can all meet up here on this thread.

gfisher100 -- I'm guessing you may be thinking of CBD oil? Have you had migraines for some time, or is this a new diagnosis?

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Hi @gfisher100, for my migraines and other headaches, I try different things.

For migraines, after battling them since age 16, in December 2015 at age 45, I got a daith ear piercing for my right ear, and I haven't had a single migraines since. I still get what I call barometric pressure and weather-related headaches, but no migraines since this piercing. I got it on my right because that's the side of my head where I usually had more headaches when it came to frequency.

For the headaches I continue to have, I always avoid bright light, and sleeping with a sleep mask always helps, plus it applies pressure to my head. Sometimes, my migraine meds help (sumatriptan), but these can't be taken more than twice a week or headaches worsen, so I use these as my last defense. Before sumatriptan, I will try tylenol and/or caffeine.

I avoid Advil because I already have colon erosions plus my mom was told not to take it as she is pre-dementia and it can worsen it. I also received e genetic report that states that I don't metabolize it properly.

Plus sleep and hot showers as warmth helps my head more that cold which actually makes it hurt more.

Otherwise, I do nothing... I had pharmacogenomics testing done a few years back, and I don't properly metabolize most medications, including all heavy duty pain meds, so those just aren't an option for me.

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@houseman36

Good evening. I've never posted on a message board before, but, I've had a constant pressure headache for nearly 3 months and I'm feeling very discouraged. The majority of the time, the pressure sits in my lower forehead above my eyebrows, in my brow ridge, and behind my eyes (particularly the right eye). Generally, the pain level is around a 4 or 5 out of 10 (sometimes the pressure isn't too strong, other times, it's pretty intense). Occasionally, I'll feel pain in my neck (no stiffness or trouble moving my neck). Sometimes, it feels like the pressure is oscillating between my ears and my forehead (mostly when lying down), and I'll feel pain in my cheeks from time to time.

I first went to the doctor in mid-January, after the pressure headache had been around for a week. I had blood work done, and there were no abnormalities in the blood work. I tried various types of OTC pain relievers - Tylenol, Advil, Motrin, as well as OTC medications specific for severe cold, sinus pressure, and allergies. None of them helped ease the pressure. I did a sinus rinse for 3 weeks and took decongestants (though, I never really had drainage or mucus of any kind as long as the headache has been around). Next, I took a week's worth of antibiotics, but the antibiotics didn't work. After that, I had an MRI. The MRI showed no brain tumor, no brain bleeding, or no concerns on the brain which might be causing the headache.

Next, the doctor placed me on an antidepressant to try to relieve tension. I started at 10 mg about 5 weeks ago, and I worked my way up to 50 mg over the weekend. So far, I haven't noticed any change with the headaches. I was told that it can take several weeks for the effects of the antidepressant to be noticed (maybe 8-12 weeks), and, that it wouldn't "acutely" treat the headache - instead, the headache might gradually reduce in severity and frequency as I continue taking the antidepressant.

I had an eye exam, and the doctor didn't note anything of concern happening with my eyes. I was prescribed a new pair of glasses, but the headache pressure patterns have remained the same before and after the new pair of glasses.

I'm tired of having this constant pressure headache, and I'm frustrated that nothing seems to be working. I'm worried that something is being missed - I just don't know what. It just doesn't seem normal to have a constant headache for nearly 3 months when I've never had a problem with headaches before in my life. Wanted to share to see if there are other ideas as to what might be going on?

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What you are generally describing is similar to what I experienced when I first moved to Texas. Ultimately, what solved the problem was the continued use of nasal saline, either Ocean, or generic saline nasal spray. Please try this before you spend any more money on diagnosis.

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Good evening. I've never posted on a message board before, but, I've had a constant pressure headache for nearly 3 months and I'm feeling very discouraged. The majority of the time, the pressure sits in my lower forehead above my eyebrows, in my brow ridge, and behind my eyes (particularly the right eye). Generally, the pain level is around a 4 or 5 out of 10 (sometimes the pressure isn't too strong, other times, it's pretty intense). Occasionally, I'll feel pain in my neck (no stiffness or trouble moving my neck). Sometimes, it feels like the pressure is oscillating between my ears and my forehead (mostly when lying down), and I'll feel pain in my cheeks from time to time.

I first went to the doctor in mid-January, after the pressure headache had been around for a week. I had blood work done, and there were no abnormalities in the blood work. I tried various types of OTC pain relievers - Tylenol, Advil, Motrin, as well as OTC medications specific for severe cold, sinus pressure, and allergies. None of them helped ease the pressure. I did a sinus rinse for 3 weeks and took decongestants (though, I never really had drainage or mucus of any kind as long as the headache has been around). Next, I took a week's worth of antibiotics, but the antibiotics didn't work. After that, I had an MRI. The MRI showed no brain tumor, no brain bleeding, or no concerns on the brain which might be causing the headache.

Next, the doctor placed me on an antidepressant to try to relieve tension. I started at 10 mg about 5 weeks ago, and I worked my way up to 50 mg over the weekend. So far, I haven't noticed any change with the headaches. I was told that it can take several weeks for the effects of the antidepressant to be noticed (maybe 8-12 weeks), and, that it wouldn't "acutely" treat the headache - instead, the headache might gradually reduce in severity and frequency as I continue taking the antidepressant.

I had an eye exam, and the doctor didn't note anything of concern happening with my eyes. I was prescribed a new pair of glasses, but the headache pressure patterns have remained the same before and after the new pair of glasses.

I'm tired of having this constant pressure headache, and I'm frustrated that nothing seems to be working. I'm worried that something is being missed - I just don't know what. It just doesn't seem normal to have a constant headache for nearly 3 months when I've never had a problem with headaches before in my life. Wanted to share to see if there are other ideas as to what might be going on?

REPLY

Hi @houseman36 and welcome to Connect! You may have noticed that I moved your post to this existing discussion on migraines/headaches so that you can connect with other who have experienced something similar. Simply click VIEW & REPLY in your email notification to read what others have had to say.

That must be so awful having these headaches every day and not being able to find a solution.

I wanted to introduce you to fellow Connect members @gfisher100, @skk15 and @johnbishop, plus meet @headacheallthetime @mouser and @keithtombs. I also wanted you to meet @jlfisher56 @staci @jupiterkaren @taterjoy and @gailb as they may be able to sympathize with you and help you search for answers.

Back to you @houseman36 are you comfortable in sharing what antidepressant you are on so that others can know more about your current treatment?

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@houseman36

Good evening. I've never posted on a message board before, but, I've had a constant pressure headache for nearly 3 months and I'm feeling very discouraged. The majority of the time, the pressure sits in my lower forehead above my eyebrows, in my brow ridge, and behind my eyes (particularly the right eye). Generally, the pain level is around a 4 or 5 out of 10 (sometimes the pressure isn't too strong, other times, it's pretty intense). Occasionally, I'll feel pain in my neck (no stiffness or trouble moving my neck). Sometimes, it feels like the pressure is oscillating between my ears and my forehead (mostly when lying down), and I'll feel pain in my cheeks from time to time.

I first went to the doctor in mid-January, after the pressure headache had been around for a week. I had blood work done, and there were no abnormalities in the blood work. I tried various types of OTC pain relievers - Tylenol, Advil, Motrin, as well as OTC medications specific for severe cold, sinus pressure, and allergies. None of them helped ease the pressure. I did a sinus rinse for 3 weeks and took decongestants (though, I never really had drainage or mucus of any kind as long as the headache has been around). Next, I took a week's worth of antibiotics, but the antibiotics didn't work. After that, I had an MRI. The MRI showed no brain tumor, no brain bleeding, or no concerns on the brain which might be causing the headache.

Next, the doctor placed me on an antidepressant to try to relieve tension. I started at 10 mg about 5 weeks ago, and I worked my way up to 50 mg over the weekend. So far, I haven't noticed any change with the headaches. I was told that it can take several weeks for the effects of the antidepressant to be noticed (maybe 8-12 weeks), and, that it wouldn't "acutely" treat the headache - instead, the headache might gradually reduce in severity and frequency as I continue taking the antidepressant.

I had an eye exam, and the doctor didn't note anything of concern happening with my eyes. I was prescribed a new pair of glasses, but the headache pressure patterns have remained the same before and after the new pair of glasses.

I'm tired of having this constant pressure headache, and I'm frustrated that nothing seems to be working. I'm worried that something is being missed - I just don't know what. It just doesn't seem normal to have a constant headache for nearly 3 months when I've never had a problem with headaches before in my life. Wanted to share to see if there are other ideas as to what might be going on?

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Hi @houseman36, I would like to add my welcome to Connect along with @ethanmcconkey and other members. I can't even begin to imagine how awful it must be to have the constant pressure headaches. I found an article that I think describes symptoms similar to yours and lists some possible causes.

What causes a buildup of pressure behind the eyes?
-- https://www.medicalnewstoday.com/articles/320936.php

Have your doctors offered any kind of diagnosis?

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@ethanmcconkey

Hi @houseman36 and welcome to Connect! You may have noticed that I moved your post to this existing discussion on migraines/headaches so that you can connect with other who have experienced something similar. Simply click VIEW & REPLY in your email notification to read what others have had to say.

That must be so awful having these headaches every day and not being able to find a solution.

I wanted to introduce you to fellow Connect members @gfisher100, @skk15 and @johnbishop, plus meet @headacheallthetime @mouser and @keithtombs. I also wanted you to meet @jlfisher56 @staci @jupiterkaren @taterjoy and @gailb as they may be able to sympathize with you and help you search for answers.

Back to you @houseman36 are you comfortable in sharing what antidepressant you are on so that others can know more about your current treatment?

Jump to this post

The antidepressant I was described is called Nortriptyline. I started at 10 mg about 5 weeks ago, and have been taking 50 mg about a week now. When the headache pressure got particularly strong a few days ago, I checked in with the doctor to see if there were any next steps (as, to this point, I haven't noticed any change with the antidepressant). I was told the antidepressant can take several weeks to have an impact, and, that it designed to reduce the frequency and intensity of the headaches. The thing is, I'm not having plural headaches; I've had one headache, constantly, for almost 3 months.

I've experienced depression cycles for my entire adult life (I'm in my late 30s), but I've never taken an antidepressant before. In this case, the antidepressant isn't being used to treat depression, but, tension. I struggle with the fact that this antidepressant is supposed to reduce tension, but, there's nothing specifically named that it's treating.

Physically, the pressure kind of feels sinus related (above the eyes, brow ridge, behind the nose, cheeks under the eyes, sometimes the ear) - but - I have not had a runny nose, nor congestion. There hasn't been any drainage to speak of. I did the sinus rinse for 3 weeks, and the doctor recommended to stop doing the sinus rinse because continuing to use the rinse might be making the headache worse.

I've not been diagnosed with anything, at this point. About 6 weeks in, the doctor said he had seen some "nasty viral things" going around this cold and flu season that were taking his patient a long time to get over, but, he didn't speculate as to what could be causing my headache. After the MRI, I think anything brain related was ruled out. He said if I were to see an ENT specialist, they would probably do a CT scan, but he recommended an MRI over a CT scan because it is less radiation and more sensitive in terms of imaging. Even though my pressure seems to be in a sinus areas, I guess I don't really have symptoms associated with a sinus infection (the antibiotic I took was supposed to treat possible sinusitis, but didn't impact the headache at all) - and - I don't know if an MRI addresses potential sinus issues.

I'm concerned the headache has lasted for 3 months, and seeing cases where folks have had headaches for years and years is very discouraging. I'm having a hard time thinking of putting up with this headache for another month, let alone years to come. My mind can't find peace as long as this headache is going on. Having a diagnosis to name what's happening, and a treatment plan to get rid of the headache, and knowing that there are other people who've had something similar and the pain did go away - those are things I was hoping for to feel more encouraged than discouraged about what's been going on.

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@houseman36

The antidepressant I was described is called Nortriptyline. I started at 10 mg about 5 weeks ago, and have been taking 50 mg about a week now. When the headache pressure got particularly strong a few days ago, I checked in with the doctor to see if there were any next steps (as, to this point, I haven't noticed any change with the antidepressant). I was told the antidepressant can take several weeks to have an impact, and, that it designed to reduce the frequency and intensity of the headaches. The thing is, I'm not having plural headaches; I've had one headache, constantly, for almost 3 months.

I've experienced depression cycles for my entire adult life (I'm in my late 30s), but I've never taken an antidepressant before. In this case, the antidepressant isn't being used to treat depression, but, tension. I struggle with the fact that this antidepressant is supposed to reduce tension, but, there's nothing specifically named that it's treating.

Physically, the pressure kind of feels sinus related (above the eyes, brow ridge, behind the nose, cheeks under the eyes, sometimes the ear) - but - I have not had a runny nose, nor congestion. There hasn't been any drainage to speak of. I did the sinus rinse for 3 weeks, and the doctor recommended to stop doing the sinus rinse because continuing to use the rinse might be making the headache worse.

I've not been diagnosed with anything, at this point. About 6 weeks in, the doctor said he had seen some "nasty viral things" going around this cold and flu season that were taking his patient a long time to get over, but, he didn't speculate as to what could be causing my headache. After the MRI, I think anything brain related was ruled out. He said if I were to see an ENT specialist, they would probably do a CT scan, but he recommended an MRI over a CT scan because it is less radiation and more sensitive in terms of imaging. Even though my pressure seems to be in a sinus areas, I guess I don't really have symptoms associated with a sinus infection (the antibiotic I took was supposed to treat possible sinusitis, but didn't impact the headache at all) - and - I don't know if an MRI addresses potential sinus issues.

I'm concerned the headache has lasted for 3 months, and seeing cases where folks have had headaches for years and years is very discouraging. I'm having a hard time thinking of putting up with this headache for another month, let alone years to come. My mind can't find peace as long as this headache is going on. Having a diagnosis to name what's happening, and a treatment plan to get rid of the headache, and knowing that there are other people who've had something similar and the pain did go away - those are things I was hoping for to feel more encouraged than discouraged about what's been going on.

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@houseman36 Has anyone considered allergies as a possible cause of your headaches... maybe something inside your house? Some possible causes of this could be something like mold growing somewhere, in the sink drain pipes, from condensation around showers, and anywhere if there has been water leakage. Do you have pets that produce dander like dogs or cats? Have the air ducts been cleaned in your home? I know all of that affects my allergies. I do allergy shots, and use HEPA filters in my home. Dust triggers my allergies a lot and it is a collection of anything that floats in the air, dander, mold spores, dust mite feces, dirt from air pollution and combustion. I do have cats and didn't realize that they were a cause of my breathing problems, but with some changes at home on how I use the air filters, and covering my bed with sheets that I wash often (where they hang out), it made a big difference. Keep looking for a cause. If your symptoms get better away from home, it might be worth looking at your living environment or even outdoor allergens in the area where you live.

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@jenniferhunter

@houseman36 Has anyone considered allergies as a possible cause of your headaches... maybe something inside your house? Some possible causes of this could be something like mold growing somewhere, in the sink drain pipes, from condensation around showers, and anywhere if there has been water leakage. Do you have pets that produce dander like dogs or cats? Have the air ducts been cleaned in your home? I know all of that affects my allergies. I do allergy shots, and use HEPA filters in my home. Dust triggers my allergies a lot and it is a collection of anything that floats in the air, dander, mold spores, dust mite feces, dirt from air pollution and combustion. I do have cats and didn't realize that they were a cause of my breathing problems, but with some changes at home on how I use the air filters, and covering my bed with sheets that I wash often (where they hang out), it made a big difference. Keep looking for a cause. If your symptoms get better away from home, it might be worth looking at your living environment or even outdoor allergens in the area where you live.

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We did go out of town for 5 days and she had same pain. I do plan to clean our air ducts but have checked everything else. We’ve had dogs for 7 yrs smaller never been an issue before. Appreciate response.

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You sound like you should get botox in your head yes it hurts but it works. I have been trying for years to get rid of mine and when they found a tumor then they finally did something. The botox is every three months and I do the Amivig one a month. It has done wonders for me. Hope this helps. Praying for you. God Bless

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