Chronic Headache

[rocquelaire]

Hi all,

Some of you may remember from the old board that I was struggling with a strange migraine that wouldn't go away. Its been ongoing for almost three months now. Well, I finally saw a neurologist this morning and she diagnosed me with Chronic Daily Headache Syndrome. This is not a migraine but is linked to it. There are medication options but I'm not very keen on them.

So, I'm going to try and make some lifestyle changes etc and see if that works first. So far I'm planning on trying to meditate every day and do more yoga as well as watching my diet and getting more exercise.



Has anyone else suffered from this syndrome? What did you do to cope with it? Are there any other suggestions for ways I can approach this?

[Arcadia]

Hi all,

Some of you may remember from the old board that I was struggling with a strange migraine that wouldn't go away. Its been ongoing for almost three months now. Well, I finally saw a neurologist this morning and she diagnosed me with Chronic Daily Headache Syndrome. This is not a migraine but is linked to it. There are medication options but I'm not very keen on them.

So, I'm going to try and make some lifestyle changes etc and see if that works first. So far I'm planning on trying to meditate every day and do more yoga as well as watching my diet and getting more exercise.

Has anyone else suffered from this syndrome? What did you do to cope with it? Are there any other suggestions for ways I can approach this?

I have been diagnosed with a "cluster headache" which I think is similar.

I've had this on and off for four months now, and the longest continuous headache so far was 3 weeks straight. I thought I was going to go out of my mind for a while there, it hurt so much.

I was given every kind of pain killer in existence lol and nothing worked, I was in soooooo much pain. Then my doctor suggested I try Valium, because apparently stress plays a big role. It actually worked! So I use Valium and have received a huge amount of relief.

I also tried a few things other than medication, like a back and neck massage which helps a bit and I also like to use peppermint essential oil (diluted) on my temples. I meditate too.

But honestly, I am yet to find anything that makes that much of a difference, other than Valium. I'd also be really interested to hear from others too about their experiences with natural remedies and such, because I can't live on Valium and I don't know how long it's going to stay effective.

Sorry I couldn't be of much help. Hope you can find something that helps you *hugs*

[HeartShadow]

Hi all,

Some of you may remember from the old board that I was struggling with a strange migraine that wouldn't go away. Its been ongoing for almost three months now. Well, I finally saw a neurologist this morning and she diagnosed me with Chronic Daily Headache Syndrome. This is not a migraine but is linked to it. There are medication options but I'm not very keen on them.

So, I'm going to try and make some lifestyle changes etc and see if that works first. So far I'm planning on trying to meditate every day and do more yoga as well as watching my diet and getting more exercise.

Has anyone else suffered from this syndrome? What did you do to cope with it? Are there any other suggestions for ways I can approach this?

Stupid question - have you had a THOROUGH eye exam? I was having godsawful decapitate-me-now headaches - and a large part of it was my glasses.

Other possible things that have helped family members is being able to change the light angles, sunglasses, things like that. Eye strain can be a NIGHTMARE and if you don't realize it's the eyeballs .....

good luck!

[Aster Breo]

Has anyone else suffered from this syndrome? What did you do to cope with it? Are there any other suggestions for ways I can approach this?

IIRC, "chronic daily headache syndrome" is sort of an umbrella term that means you have a certain number of headaches per month. The term covers several different kinds of chronic headache, including migraines. (More info here and here.) So it might help you to try to narrow down exactly what type of headache(s) you have, since different treatments might work better for different types of headache. That said, while there ARE difference in the various types of headache, there is a huge amount of overlap in symptoms and in treatments.

Currently, my "official" diagnosis is "severe migraine syndrome" and traumatic brain injury. Over the years, I've been given a number of other headache diagnoses by various doctors, including cluster headaches, stress headaches, tension headaches, and medication rebound headaches. Besides the occasional useful medication, I've had good luck and some relief from acupuncture and physical therapy.

The specific kind of PT varies depending on the therapist, but cranio-sacral massage and trigger point release have really helped -- at least in the short run. My physical therapist has also given me several stretches to use at home, which usually help a lot. Relaxation and breathing techniques can also be useful.

Acupuncture was surprisingly effective for a couple of years. Then it just sort of stopped helping. (That has happened with many of the medications I've tried, too.) The practitioner tried some different approaches, but couldn't find anything that worked again, once it stopped. (It's been a number of years now, so it might be worth trying acupuncture again.)

The acupuncturist I saw was also a nutritionist, so she made a number of suggestions for what to eat, what not to eat, and what kinds of supplements might help. You might want to find someone who can help you with diet and supplements. A good friend recently discovered that gluten is a huge headache trigger for her. Now that she's cut it out of her diet, she feels so much better. Similarly, caffeine triggers headaches for some people while relieving them for other people, and there are lots of other kinds of food that can cause problems.

Learning what your triggers are might also give you ideas of what to do and not do. F'ex, many people are very sensitive to barometric pressure but don't realize it. For me, even riding the subway causes a significant pain increase. I'm so sensitive that the pressure changes that happen when the train enters or exits a tunnel are enough to really make me miserable.

Lighting is another common trigger -- natural daylight is usually best, although the brightness has to be regulated, while fluorescent lights can send me straight to my pain meds. I've learned to not use my computer or watch TV in an otherwise dark room. Something about the contrast between the dark and bright is painful for me. On a similar note, eyestrain can also be a problem. If it is for you, you might want to try large print.

Fumes and odors can be another big problem. Some people are super sensitive to perfume, hairspray, paint, cigarette smoke, and pretty much anything else that can float through the air. OTOH, many people find certain scents to be very soothing, notably peppermint and lavender. My daughter, who also suffers from severe migraines, likes to wear her scent locket when she feels a headache coming on. Sometimes, that's enough to keep the pain at bay for a while.

It can be incredibly frustrating and time consuming to try to figure out what your triggers are and what helps you. To be honest, we don't really know what causes many types of headaches (including migraines). So it can be next to impossible to figure out how to effectively treat any of them.

If I had it to do over again, and if I knew then what I know now, I would have tried to be much more methodical about experimenting with triggers and treatments. Do the research first and talk to your doctors about how to work through the diet to find triggers and other experiments like that.

And, while you're figuring all that out, keep your sunglasses handy (bright light can be unbelievably painful) and ice packs in the freezer. If you can, see a physical therapist as soon as possible for evaluation and treatment. (You might be surprised at what you'll find. I've seen countless doctors and a bunch of therapists over the last 3 decades, but only recently learned that my right leg is 3 cm shorter than my left. My most recent physical therapist caught that.)

I hope some of this helps you!

Good luck!

~ Aster

[victoreia]

Has anyone else suffered from this syndrome? What did you do to cope with it? Are there any other suggestions for ways I can approach this?

I suffer from migraines, and Aster, Arcadia and Heartshadow all said what I would.

Some food triggers that I've heard of (not mine): alcohol, caffeine, chocolate, peanuts, red meat. One food trigger I definitely have is all-beef hot dogs--within twenty minutes I'll have auras, nausea, and a marching band playing in my head. (Hence, I avoid all hot dogs, and most sausages in general.)

I have a prescription for Tylenol with codeine; it helps, as long as I take it early enough, and avoid computer work and bright lights after. Also, I tend to head straight for an ice-pack, my bed, and my sleep-mask when it gets really bad.

Good luck!

[Shawnee]

Learning what your triggers are might also give you ideas of what to do and not do. F'ex, many people are very sensitive to barometric pressure but don't realize it. For me, even riding the subway causes a significant pain increase. I'm so sensitive that the pressure changes that happen when the train enters or exits a tunnel are enough to really make me miserable.

Lighting is another common trigger -- natural daylight is usually best, although the brightness has to be regulated, while fluorescent lights can send me straight to my pain meds. I've learned to not use my computer or watch TV in an otherwise dark room. Something about the contrast between the dark and bright is painful for me. On a similar note, eyestrain can also be a problem. If it is for you, you might want to try large print.

Fumes and odors can be another big problem. Some people are super sensitive to perfume, hairspray, paint, cigarette smoke, and pretty much anything else that can float through the air. OTOH, many people find certain scents to be very soothing, notably peppermint and lavender. My daughter, who also suffers from severe migraines, likes to wear her scent locket when she feels a headache coming on. Sometimes, that's enough to keep the pain at bay for a while.
~ Aster

I had headaches or migraines almost daily for years. MRI's etc showed nothing so was just given pain meds. It would help sometimes but only a little bit. A few years ago I was diagnosed with Fibromyalgia. Since starting a drug regimen for that the headaches have lessened quite a bit. Now I have on average once or twice a month and the severity varies.

Of course the triggers I quoted from Aster are something I have to watch for. I can't control barometric pressure so spring/summer storms play havoc on me. Lights, esp overhead lighting, cause problems. I have even been known to wear my sunglasses while riding in the car at night to avoid oncoming headlights.

My food triggers are caffeine and chocolate (my true food love). Smells don't bother me too much except for hotdogs.

Try to keep a log when you have a headache. Write down everything no matter how minor and over time a pattern may emerge. I hope you find relief soon.

[SunflowerP]

One really suoer-simple suggestion no one has mentioned yet: stay hydrated. The "you need eight 8-ounce glasses of water a day" thing is a misconception (it comes from an estimate made of the total amount of liquid, including that in food, that a person typically takes in in a day), but it's still possible to get underhydrated, and really hard to overhydrate - getting more hydration may or may not help headaches, but being underhydrated is very likely to exacerbate them.

Sunflower

[victoreia]

One really super-simple suggestion no one has mentioned yet: stay hydrated. The "you need eight 8-ounce glasses of water a day" thing is a misconception (it comes from an estimate made of the total amount of liquid, including that in food, that a person typically takes in in a day), but it's still possible to get underhydrated, and really hard to overhydrate - getting more hydration may or may not help headaches, but being underhydrated is very likely to exacerbate them.

Sunflower

*slaps forehead* Yes! This! While I was in the hospital last summer, I got a very bad migraine, that the doctor determined was caused by dehydration. Since I was on the lethargic side right then, it didn't occur to me that I should have been drinking more water. Once they got me hydrated (mostly via an I.V.), the migraine practically vanished.

[KittyVel]

Hi all,

Some of you may remember from the old board that I was struggling with a strange migraine that wouldn't go away. Its been ongoing for almost three months now. Well, I finally saw a neurologist this morning and she diagnosed me with Chronic Daily Headache Syndrome. This is not a migraine but is linked to it. There are medication options but I'm not very keen on them.

So, I'm going to try and make some lifestyle changes etc and see if that works first. So far I'm planning on trying to meditate every day and do more yoga as well as watching my diet and getting more exercise.

Has anyone else suffered from this syndrome? What did you do to cope with it? Are there any other suggestions for ways I can approach this?

I suffered from this for 6 years solid. It was NOT fun. I started to exercise and eat healthier. Cutting down on caffeine really helped (once the withdrawals went away, of course) as well. I would say to watch what you eat and keep away from too many sugars and things like that. It helped me.

[Dragonfly]

Hi all,

Some of you may remember from the old board that I was struggling with a strange migraine that wouldn't go away. Its been ongoing for almost three months now. Well, I finally saw a neurologist this morning and she diagnosed me with Chronic Daily Headache Syndrome. This is not a migraine but is linked to it. There are medication options but I'm not very keen on them.

So, I'm going to try and make some lifestyle changes etc and see if that works first. So far I'm planning on trying to meditate every day and do more yoga as well as watching my diet and getting more exercise.

Has anyone else suffered from this syndrome? What did you do to cope with it? Are there any other suggestions for ways I can approach this?

I've got the headache thing going on, too; migraines since I was a pre-teen.
Glad to see more yoga is on your list, it's helped me tremendously. PT and acupuncture help some too, worth a try.