headaches update!

[trixiedicksnatch]

Ok since we have a well being board and I've already posted all about my hemorrhoids over here (ps I named them franklin and lex Luther) lets talk about headaches.

I get chronic migraines both typical and atypical. I also get tension and cluster headaches and plain ol headaches.

I haven't gone a day without having a headache since I was in 4th grade. I've gotten glasses, had my wisdom teeth removed, gotten an MRI and been put on daily allergy meds (Zyrtec and nasonex)

I also get headaches from my blood pressure but those have calmed down since I started taking meds for my high bp

I'm wondering if anyone else has this problem. I'm in a constant battle against headaches and then rebound headaches. I've tried all if the triptans and have serious adverse reactions to them. And migranal almost killed me in the er.

I am on fioricet and that seems to be the only thing I can take regularly that helps. I was on midrin but it's not available anymore. Vicodin works great if its strong enough but drs are stingy with the narcotics around here.

Have you found something that helps? My neuro wants me to get the migraine Botox but fuck no.

Long ass post.

[bluefish]

Yep. I take preventative meds- Topomax/ topiramate. I've gone on and off it over the course of 10? years and it's the only thing that really helps.
Like you, I went through the scans, allergy testing, took fioicet, viodin, imitrex, etc.
Topomax takes some getting used to, but I've found the side effects taper off after a while.


Oh the Places You'll Go!
*i am here*

[trixiedicksnatch]

I can't remember why but my neuro didn't want me on topomax.

Today is one of my least headachey days I've had in over a month and its still a 7. :/


I think I'm going to talk to my dr about pt or a chiro.


I wonder if that would help

[trixiedicksnatch]

Aug 8, 2014 19:06:21 GMT -5 carrotsmakemefat said:

I took topomax at one point and I didn't have a good response. Why no to the Botox?

I'm terrified of the side effects. I got the pamphlet at my last appointment and it freaked me out.

[secretlyevil]

Have you tried acupuncture?

[pinkly]

I've suffered from headaches, different kinds, for over 2 decades. Honestly, it has been a huge factor in my battling various periods of depression.

I've been on numerous medications, topamax included. Right now I am on generic Wellbutrin as a migraine preventative. When I do get a migraine (or any headache really) I take an imitrex with 2 diclofenac. This actually has been the only thing to help an existing headache. Imitrex does not work for me by itself.

They've suggested Botox to me too, but yeah, not a chance.

I've been to both chiros and orthos over the years and neither had any impact on my headaches.

Good luck, I know how discouraging it is.

[trixiedicksnatch]

Aug 8, 2014 23:18:41 GMT -5 secretlyevil said:

Have you tried acupuncture?

I did acupuncture once for infertility so I'm not against at all I would totally try it for my headaches.

I wonder if my insurance would cover it....

[trixiedicksnatch]

pinkly

I typed a huge response to you but it got eaten.

How is the diclofenac (sp) different from other NSAIDs ?

Also I'm sorry to everyone who deals with this too.

[pinkly]

Aug 9, 2014 1:52:32 GMT -5 trixiedicksnatch said:

pinkly

I typed a huge response to you but it got eaten.

How is the diclofenac (sp) different from other NSAIDs ?

Also I'm sorry to everyone who deals with this too.

I honestly haven't a clue! All the dr told me was that it is like aleve. I've even been able to take it without the imitrex from time to time and have it work.

With this combo - the Wellbutrin, imitrex, diclofenac - I haven't had one of those migraines that makes you wish you were dead in quite a while. You know the ones.

[wanderingenough]

I've had chronic daily headaches and migraines for 20+ years. I've tried every rescue med, plus some anti depressants, anti seizure meds, and blood pressure meds as daily preventatives.

The only thing I've seen relief with is pericranial nerve blocks. It's about 30 shots every quarter. I initially got them because I've been TTC for the last 18 months and didn't want to be on any daily meds. I saw a dramatic decrease after about 5-6 months. I went from 23-25 average headaches a month with 10+ of those severe (i.e interfered with daily life), to about 12-15 headaches with only about 5 severe. Still a lot for a normal person, but a dramatic reduction for me. That pattern was maintained for over a year, with them only coming back in the last six weeks. My neuro has said not to lose hope though, as treatments like this come in waves.

Not sure if it would help with your exact type, but something to look into!

[secretlyevil]

Aug 9, 2014 1:44:17 GMT -5 trixiedicksnatch said:

Aug 8, 2014 23:18:41 GMT -5 secretlyevil said:

Have you tried acupuncture?

I did acupuncture once for infertility so I'm not against at all I would totally try it for my headaches.

I wonder if my insurance would cover it....

mine covers 20 visits a year. It's a specialty doctor copay. I would recommend checking out acupuncture as well as chiropractic.

Diet is another thing. Cutting out all caffeine, chocolate, fake sugar helps.

[secretlyevil]

Aug 9, 2014 11:00:22 GMT -5 carrotsmakemefat said:

Are you avoiding all headache meds to avoid the rebound issues? Have you tried a migraine/headache food journal? See if one thing is causing the issue? I know onions and aged cheeses give me massive headaches. But it took a food journal to really pinpoint the issue.

My neuro told me that a low dose depression med can work. I ended up being diagnosed with another issue and so I avoided any more neuro meds.

Magnesium supplements can also work. I'm on 400 mg daily

you had to give up aged cheese? Poor thing.

[trixiedicksnatch]

Aug 9, 2014 11:00:22 GMT -5 carrotsmakemefat said:

Are you avoiding all headache meds to avoid the rebound issues? Have you tried a migraine/headache food journal? See if one thing is causing the issue? I know onions and aged cheeses give me massive headaches. But it took a food journal to really pinpoint the issue.

My neuro told me that a low dose depression med can work. I ended up being diagnosed with another issue and so I avoided any more neuro meds.

Magnesium supplements can also work. I'm on 400 mg daily

I've gone through huge elimination diets and the only food trigger I have is MSG. I have had to do a couple food journals as well as tracking headaches against what part of my cycle I'm in. There wasn't anything that showed causation.

I avoid pain relievers as much as I can to avoid rebound but it hurts so much that its hard. I've only recently become aware of the difference in my normal types of headaches vs. rebound (last 3 years or so).

We tried amatriptaline and noratriptoline (sp on both) for preventative and they just made me tired and weepy and a little psycho.

I have an apt with my pcp next week I will see if I can get a referral to pt, accupuncure, and anything else lol.

I'm just so tired of all of this. If I could just give up a food and make it better I would in a heart beat.

[midnightrae]

Have you tried keeping a record of what you are eating, when the migraine starts/how long it lasts? Most of my chronic migraines were due to food allergies/intolerances. Most narcotics don't work for my migraines anymore and I can't take any OTC medications for them either. Keep us updated!

Sent from my SCH-I535 using proboards

[af1212]

Aug 8, 2014 19:05:48 GMT -5 trixiedicksnatch said:

I can't remember why but my neuro didn't want me on topomax.

Today is one of my least headachey days I've had in over a month and its still a 7. :/


I think I'm going to talk to my dr about pt or a chiro.


I wonder if that would help

I have had diagnosed migraines for about 15 years, and had chronic headaches as a child. Up until about 6 months ago I was having about 3 or 4 per week with no relief from prophylactic meds.  I have tried all kinds of drug combos with very little relief.

Then starting in March I went to a chiropractor for the first time.  It was like magic!  I have been having an average of one headache a week since the second week that I went there, and am med-free except for my relief meds that I take just that once per week.  I now go about once every 3 weeks for maintenance and the goal is to wean me to once every other month.  This was something that the neuros that I see were not against, but definitely said it was unlikely to work.

I have no idea if these results are typical but aside from the headache relief, I feel so much better all over.  My chiro was very upfront and said that if I hadn't had any reduction in migraines in three weeks that it wasn't going to work for me and we would pursue other options.  I would say definitely give it a try! 

[trixiedicksnatch]

Aug 10, 2014 21:07:25 GMT -5 midnightrae said:

Have you tried keeping a record of what you are eating, when the migraine starts/how long it lasts? Most of my chronic migraines were due to food allergies/intolerances. Most narcotics don't work for my migraines anymore and I can't take any OTC medications for them either. Keep us updated!

Sent from my SCH-I535 using proboards

Yes I did several journals for different drs.


I am on day 4 of no meds at all aside from my Bp meds and other important rx's. I wanted to try to do a full detox of painkillers/OTC. I'm dying dead. It was worse yesterday and my Bp is high as fuck considering I'm still taking my Bp meds 150/90 this morning.

Wtf.

I'm going to try to hold out one more day but I don't know if ill make it.

[kirra]

Have you checked with your cardiologist or whatever dr is monitoring your bp? I'm not sure I would be comfortable continuing the pain med detox without checking, since pain does often increase bp.

I did the whole elimination diet for migraines, and it turns out my trigger food isn't even on the list. It's anything spicy. So I would definitely check your food diaries once you're feeling better to make sure there isn't anything you missed.

Have you tried meditation and mindfulness? It doesn't help the pain, but it helps me deal with pain, if that makes sense. But that's mostly joint pain. I don't know if it's doable for headaches.

Is any dr monitoring your pain med detox? If it's just OTC stuff you're probably fine, but going off certain prescription meds can be hell. If you are going off rx meds, please at least call your pharmacist to make sure going cold turkey is safe.

Good luck with whatever you decide. I hope you feel better soon.

[kirra]

I forgot to answer about my headaches, and my phone isn't letting me get in the box to edit.

I have relatively rare migraines (about once a month randomly, but other than that only when I eat a trigger food). Classic migraines with auras.

Most of my headaches are tension headaches. The thing that had helped the most is pt for my shoulders and back to work on all my muscle spasms.

I have rebound headaches if I go off Advil/aleve/Motrin, because I take one of them more days than not for joint swelling, but the rebounds only last four days after I stop taking the OTC stuff. I consider these a consequence of medicating myself and not true headaches, if that makes sense.

[pretzel]

Topirimate at the maximum dose + eliminating triggers is the only thing that has helped me. I wonder why your doctor isn't interested in it? My neuro is all over topamax...

[trixiedicksnatch]

Aug 11, 2014 20:24:20 GMT -5 pretzel said:

Topirimate at the maximum dose + eliminating triggers is the only thing that has helped me. I wonder why your doctor isn't interested in it? My neuro is all over topamax...

I was just reading about it and I'm wondering if it has to do with the possibility of weightloss as a common side effect. Pre preg (last time I saw neuro) I had and usually had an extremely low bmi.

[trixiedicksnatch]

Aug 11, 2014 20:16:14 GMT -5 kirra said:

Have you checked with your cardiologist or whatever dr is monitoring your bp? I'm not sure I would be comfortable continuing the pain med detox without checking, since pain does often increase bp.

I did the whole elimination diet for migraines, and it turns out my trigger food isn't even on the list. It's anything spicy. So I would definitely check your food diaries once you're feeling better to make sure there isn't anything you missed.

Have you tried meditation and mindfulness? It doesn't help the pain, but it helps me deal with pain, if that makes sense. But that's mostly joint pain. I don't know if it's doable for headaches.

Is any dr monitoring your pain med detox? If it's just OTC stuff you're probably fine, but going off certain prescription meds can be hell. If you are going off rx meds, please at least call your pharmacist to make sure going cold turkey is safe.

Good luck with whatever you decide. I hope you feel better soon.

I went off OTC and fioricet. I don't need to be monitored as its a rescue not a preventative. I check my bp 2x a day and its not crazy for it to spike some times. Without bp meds I hover in the 160/90 range. So this wasn't too high for me.

I went over my journals with my dif drs and we agreed that there was no food or hormonal trigger.

I do get headaches when I'm dehydrated but that's normal and expected.

I haven't tried meditation, but I do know that working out frequently helps reduce my headaches even though I get a headache as soon as my work out is finished (usually during my cool down) sometimes during, my drs attribute that to the narrow blood vessels trying to cops with increased blood flow. Unfortunately I can't work out right now because my stupid ear is broken.

ETA my bp tonight was 124/82 so back to my medicated normal.

[kirra]

Aug 12, 2014 2:23:37 GMT -5 trixiedicksnatch said:

Aug 11, 2014 20:16:14 GMT -5 kirra said:

Have you checked with your cardiologist or whatever dr is monitoring your bp? I'm not sure I would be comfortable continuing the pain med detox without checking, since pain does often increase bp.

I did the whole elimination diet for migraines, and it turns out my trigger food isn't even on the list. It's anything spicy. So I would definitely check your food diaries once you're feeling better to make sure there isn't anything you missed.

Have you tried meditation and mindfulness? It doesn't help the pain, but it helps me deal with pain, if that makes sense. But that's mostly joint pain. I don't know if it's doable for headaches.

Is any dr monitoring your pain med detox? If it's just OTC stuff you're probably fine, but going off certain prescription meds can be hell. If you are going off rx meds, please at least call your pharmacist to make sure going cold turkey is safe.

Good luck with whatever you decide. I hope you feel better soon.

I went off OTC and fioricet. I don't need to be monitored as its a rescue not a preventative. I check my bp 2x a day and its not crazy for it to spike some times. Without bp meds I hover in the 160/90 range. So this wasn't too high for me.

I went over my journals with my dif drs and we agreed that there was no food or hormonal trigger.

I do get headaches when I'm dehydrated but that's normal and expected.

I haven't tried meditation, but I do know that working out frequently helps reduce my headaches even though I get a headache as soon as my work out is finished (usually during my cool down) sometimes during, my drs attribute that to the narrow blood vessels trying to cops with increased blood flow. Unfortunately I can't work out right now because my stupid ear is broken.

ETA my bp tonight was 124/82 so back to my medicated normal.

I'm glad your bp is back down.

Meditation helps with my tension headaches because it helps relax my muscles. So if activities that relax your muscles help, meditation probably will too. I doubt it would help any of the rest of your headaches.

Mindfulness helps me focus on things other than pain. It's not particularly effective, but is better than nothing.

I'm skeptical that either would help you much, especially with a headache since they make it harder to think, but it looks like you've exhausted most medical options and they aren't doing enough.

[trixiedicksnatch]

Aug 12, 2014 2:41:24 GMT -5 kirra said:

Aug 12, 2014 2:23:37 GMT -5 trixiedicksnatch said:

I went off OTC and fioricet. I don't need to be monitored as its a rescue not a preventative. I check my bp 2x a day and its not crazy for it to spike some times. Without bp meds I hover in the 160/90 range. So this wasn't too high for me.

I went over my journals with my dif drs and we agreed that there was no food or hormonal trigger.

I do get headaches when I'm dehydrated but that's normal and expected.

I haven't tried meditation, but I do know that working out frequently helps reduce my headaches even though I get a headache as soon as my work out is finished (usually during my cool down) sometimes during, my drs attribute that to the narrow blood vessels trying to cops with increased blood flow. Unfortunately I can't work out right now because my stupid ear is broken.

ETA my bp tonight was 124/82 so back to my medicated normal.

I'm glad your bp is back down.

Meditation helps with my tension headaches because it helps relax my muscles. So if activities that relax your muscles help, meditation probably will too. I doubt it would help any of the rest of your headaches.

Mindfulness helps me focus on things other than pain. It's not particularly effective, but is better than nothing.

I'm skeptical that either would help you much, especially with a headache since they make it harder to think, but it looks like you've exhausted most medical options and they aren't doing enough.

Thank you for all of your responses. I wish there were more options.

[trixiedicksnatch]

FYI I liked everyone's responses because I appreciate everyone's suggestions and responses in general

[kirra]

Aug 12, 2014 2:45:55 GMT -5 trixiedicksnatch said:

Aug 12, 2014 2:41:24 GMT -5 kirra said:

I'm glad your bp is back down.

Meditation helps with my tension headaches because it helps relax my muscles. So if activities that relax your muscles help, meditation probably will too. I doubt it would help any of the rest of your headaches.

Mindfulness helps me focus on things other than pain. It's not particularly effective, but is better than nothing.

I'm skeptical that either would help you much, especially with a headache since they make it harder to think, but it looks like you've exhausted most medical options and they aren't doing enough.

Thank you for all of your responses. I wish there were more options.

I know. I wish there were more options for so many things. Including better pain control, because chronic pain does awful things to our bodies. You might have high bp anyway, but it wouldn't be as high without chronic pain and the stress from chronic pain.

I replied again because I felt like shit for recommending meditation when I know it's ineffective, and I was worried I wasn't clear enough about how it does help, but not that much, and might not even be worth trying.

But when you're out of good options, you start listing the bad ones...

[trixiedicksnatch]

So I saw my new pcp today and she upped my fioricet and put me on midrin (which was a bitch to find, I guess it's back on the market now but not widely used) added a muscle relaxer and upped my dose of Bp meds

I'm seeing her again in two weeks for omt www.osteopathic.org/osteopathic-health/treatment/Pages/default.aspx

She discoverd Im having pretty severe muscle spasms in my neck (first dr to even feel my neck or shoulders) and she was shocked at how many knots she felt and thinks its likely I have a pinched nerve or twenty as well.

She is getting me referrals for massage therapy and pt and possibly a chiro.

I want to marry her

[Pibs]

I'm glad your PCP has a plan for you! It's a bummer nobody tried a muscle relaxant for you before, because mine can definitely be triggered if my shoulders and neck get too tight. I've also found a chiropractor helpful, as well as massage to get out the knots in my neck and shoulders. Anything that can affect bloodflow to the brain can trigger a migraine, which is why caffeine helps me but triggers migraines for my husband.

As far as other medication options go, propranolol is a beta blocker that's FDA approved for migraine prevention. Other beta blockers are also used, but aren't officially indicated. And all should have an effect on decreasing blood pressure, so it can do double duty that way. Calcium channel blockers (mostly verapamil) can also be used in patients who don't tolerate beta blockers. Topiramate (Topamax), as others have mentioned, and valproic acid have also been used successfully for prevention. If they're chronic, that doesn't seem like hormones would be a major trigger, but sometimes hormonal birth control works well for people (or causes migraines, so it's a tricky gray area). You said you've tried amitriptyline and nortriptyline, which are also considered first line for migraine prevention, but SSRIs like Zoloft, Lexapro, and others sometimes work.

Also, I definitely agree with magnesium as something to try as long as you've got good kidneys and your doctor is aware. Anecdotally, it worked really well for my husband, my mom, and a pharmacist I worked with and the guidelines now list it as a "probably effective" method of migraine prevention.

[trixiedicksnatch]

Aug 13, 2014 12:52:24 GMT -5 Pibs said:

I'm glad your PCP has a plan for you! It's a bummer nobody tried a muscle relaxant for you before, because mine can definitely be triggered if my shoulders and neck get too tight. I've also found a chiropractor helpful, as well as massage to get out the knots in my neck and shoulders. Anything that can affect bloodflow to the brain can trigger a migraine, which is why caffeine helps me but triggers migraines for my husband.

As far as other medication options go, propranolol is a beta blocker that's FDA approved for migraine prevention. Other beta blockers are also used, but aren't officially indicated. And all should have an effect on decreasing blood pressure, so it can do double duty that way. Calcium channel blockers (mostly verapamil) can also be used in patients who don't tolerate beta blockers. Topiramate (Topamax), as others have mentioned, and valproic acid have also been used successfully for prevention. If they're chronic, that doesn't seem like hormones would be a major trigger, but sometimes hormonal birth control works well for people (or causes migraines, so it's a tricky gray area). You said you've tried amitriptyline and nortriptyline, which are also considered first line for migraine prevention, but SSRIs like Zoloft, Lexapro, and others sometimes work.

Also, I definitely agree with magnesium as something to try as long as you've got good kidneys and your doctor is aware. Anecdotally, it worked really well for my husband, my mom, and a pharmacist I worked with and the guidelines now list it as a "probably effective" method of migraine prevention.

I am on propranolol I have been on it for two years for my high blood pressure. We just upped my dose to 60 mg a day. At one point I was 60mg 2x a day. It helps my Bp and helped my headaches a little at first. It makes me super tired which sucks because its not like I can drink energy drinks anymore.

I didn't get a chance to talk to her about magnesium, between my headache and my dd being a bratty baby and having another apt. I totally spaced it.

[secretlyevil]

Aug 12, 2014 22:22:38 GMT -5 trixiedicksnatch said:

So I saw my new pcp today and she upped my fioricet and put me on midrin (which was a bitch to find, I guess it's back on the market now but not widely used) added a muscle relaxer and upped my dose of Bp meds

I'm seeing her again in two weeks for omt www.osteopathic.org/osteopathic-health/treatment/Pages/default.aspx

She discoverd Im having pretty severe muscle spasms in my neck (first dr to even feel my neck or shoulders) and she was shocked at how many knots she felt and thinks its likely I have a pinched nerve or twenty as well.

She is getting me referrals for massage therapy and pt and possibly a chiro.

I want to marry her

Nice! Massage is lovely.

[Pibs]

Aug 13, 2014 17:38:18 GMT -5 trixiedicksnatch said:

Aug 13, 2014 12:52:24 GMT -5 Pibs said:

I'm glad your PCP has a plan for you! It's a bummer nobody tried a muscle relaxant for you before, because mine can definitely be triggered if my shoulders and neck get too tight. I've also found a chiropractor helpful, as well as massage to get out the knots in my neck and shoulders. Anything that can affect bloodflow to the brain can trigger a migraine, which is why caffeine helps me but triggers migraines for my husband.

As far as other medication options go, propranolol is a beta blocker that's FDA approved for migraine prevention. Other beta blockers are also used, but aren't officially indicated. And all should have an effect on decreasing blood pressure, so it can do double duty that way. Calcium channel blockers (mostly verapamil) can also be used in patients who don't tolerate beta blockers. Topiramate (Topamax), as others have mentioned, and valproic acid have also been used successfully for prevention. If they're chronic, that doesn't seem like hormones would be a major trigger, but sometimes hormonal birth control works well for people (or causes migraines, so it's a tricky gray area). You said you've tried amitriptyline and nortriptyline, which are also considered first line for migraine prevention, but SSRIs like Zoloft, Lexapro, and others sometimes work.

Also, I definitely agree with magnesium as something to try as long as you've got good kidneys and your doctor is aware. Anecdotally, it worked really well for my husband, my mom, and a pharmacist I worked with and the guidelines now list it as a "probably effective" method of migraine prevention.

I am on propranolol I have been on it for two years for my high blood pressure. We just upped my dose to 60 mg a day. At one point I was 60mg 2x a day. It helps my Bp and helped my headaches a little at first. It makes me super tired which sucks because its not like I can drink energy drinks anymore.

I didn't get a chance to talk to her about magnesium, between my headache and my dd being a bratty baby and having another apt. I totally spaced it.

Yeah, they slow your heart rate down, too, so tiredness is a common side effect.  It's nice when it goes away, but that doesn't always happen.  They make an extended release formulation, and sometimes that can help with side effects.  I hope that the other things work for you!