9 year headache - 24/7

Hello, I am new here and looking for support. My friends don't really get it and sadly, I don't even get to talk to them anymore. My husband is awesome most of the time but he is so busy taking care of the family and I hate complaining to him about it. I am so frustrated with being in such severe pain for so long. I am scared that this will be the rest of my life. I have a wonderful family that I want to LIVE my life with not be stuck in a dark, quiet room for the rest of my life! I feel guilt for not being able to go to my kids games or school fundraisers. I feel guilty for not being able to even cook them dinner!

I don't even have a true diagnosis. I have been to several neurologists and pain doctors and have several suggested diagnosis...that's a big help!
I have been treated for migraines with all the normal meds. I have been treated for pinched nerves in the C-spine with epidurals and spine blocks. I have been treated for tense muscles with botox and muscle relaxers. I have had blood testes, MRI's, CAT scans, x-rays and nerve tests. Nothing has shown up.
The HA doesn't go away it only fluctuates in pain. The last 2 years on a scale of 1 to 10 my average pain level has been a 7/8. I don't get sick from it and I don't see aurors (sp?) or spots. I am extremely sensative to light and noise. I have been 85% bed ridden (with blankets over my windows) for the past 6 months or so.
I have been on everything from tylenol to morphine and nothing helps!
I am so frustrated and don't know what to do anymore.

I live in a state where marijuana has been legalized for medical use. I never smoked the stuff and even voted against the law! LOL Now, being as desperate as I am I recently received my MMCard and have tried using it for the past week. NOTHING is happening except maybe for it being a good muscle relaxer. The place where I got the stuff from has told me that I should at least be getting "buzzed" after two "hits". Well, I have graduated up to 6 "hits" (knowing I can't overdose on it) and again...NOTHING. No pain relief, no buzz, no lightheadedness...nothing!

I don't smoke or drink excessively. I drink an occaisional glass or 2 of wine every 6 months! I don't do illegal drugs. I have been off of the pain narcotics for months since it wasn't helping and only causing other complications.
I take ibuprophen 800 mg 4 x's a day and 2 fioricet 2x's a day in between the ibuprophen doses. I have to take benedryl to sleep plus melatonin and valarian root. Sometimes the pain wakes me up at night...oddly, it puts me to sleep when it is real severe (9).
Anyone else dealing with this type of headache? Anybody want to be my venting pen pal?

Hi Seastar,

First welcome. You are not alone. Many people here have chronic migraine. We've all been through the medication roulette wheel with doctors, with things either not working or having side effects even worse than what we started off with. Some doctors try to be helpful, some are uncaring jerks.

It is pretty discouraging, but for me the important thing is DO NOT GIVE UP. Keep trying things, no matter how remote, or we will be stuck with this forever, and as you point out, it seriously interferes with our lives that we would like to be living.

So what to do? It sounds like you have tried a lot of things. Have you tried the hormonal route? I went from 80% headache days (about 1/4 were 8-10 on the pain scale), down to 20% headache days (with almost none >5-6), after trying natural progesterone. I also take vitamin D, iodide, and magnesium. This has worked better than all the meds I tried. I can send more on this if you are interested.

The reality though is that different things work different people. I am sure others will share their strategies with you. At the very least it's useful to hear other people's experiences and know you are not alone.

we're glad you found us here, but sad that you have to be here. that's pretty much how most of us feel; we couldn't really make it thru life without the excellent support found here, but there aren't any magic answers, as you already know so well.

i've been reading and posting on this forum for 14 years now, and have had migraines for 42 years. but not daily, like you, til about 10 years ago. yep, that's a long time to be in constant pain, and i feel yours, because i have a similar story.

a diagnosis is what we badly need. go to 100 doctors and you'll get 100 different diagnoses. let's face it; that's why they call it the practice of medicine; there's a lot of guesswork and hunches involved, and sometimes for head pain people, nothing pans out.

i know people who have had drastic brain surgeries and other highly invasive procedures done to themselves (me included, but i did decline the offered brain surgery) and these people don't always get better, either.

most of us find a drug or drug combo which helps us get thru our lives. on that subject, if you haven't tried ALL SEVEN of the triptan drugs, please try to do that, unless, of course, you have had a heart issue with any of them. these are my lifesavers, and i take one or another daily. personally, no pain drug does diddly for my pain, and believe me, i've tried them all thru the years, and in multiple ER's.

daily use of triptans is NOT RECOMMENDED by anyone, but i've done it for the past many years, with no apparent damage to myself, and this regimen has allowed me to have a life, where i had very little, before. perhaps if you could give a knockout punch to one bad migraine, you might find that it didn't return so quickly.

you will get the scary myth/story from most doctors that triptan drugs cause rebound headaches. the research is ambiguous on this issue, and some people and doctors think it is untrue for those drugs, but can be very true for painkillers. (triptans are not classified as painkillers. they are the only drugs specifically targeted to this particular kind of head pain).

get samples of the triptans if possible, or else get a small and relatively cheap prescription for each. my two miracles are maxalt and amerge/naratriptan. maxalt is still expensive as it is not yet generic, but for YEARS, i begged for samples and got thru, stressfully, that way.

no way could i possibly afford $900 plus per month for one drug. my social security is less than that! and now i do have excellent drug coverage, with a doctor's over-riding of the maximum allowed amounts of both drugs.

please ask more questions, and do lots of reading of old posts which sound relevant to your situation. you will surely find some clues here, and more avenues to pursue. we wish we could promise you magic answers but these are few and far between. please, also, don't be taken in by the outrageous claims by unscrupulous internet sites which are full of "cured" migraine people. migraine isn't curable, but it is certainly treatable and manageable for most.

how disappointing, to read of your experience with pot. my kids have been after me for years, to try it, but somehow i have known instinctively that my experience would be similar to yours, as in NO HELP. but if pot were legalized in the u.s. congress, i would surely try it, as i've tried nearly everything else. some treatments/things were unbelieveably expensive, (back in the days when i had $) and they helped zero.

lots of good luck to you, and you are welcome to pm me if you'd like. dianne

Great post Dianne...

Very useful, hope it helps our friend.

P

Your post is very similiar to my own self. The advice given already is sound. I will add to give new scripts enough time to work, I think I cut some short.

I had six years just like yours. I think the things that helped the most were things that are thought to raise seratonin, though not all SSRI were effective. I did chance upon Clonodine .1 mg 3 times a day, and now have a M about one every three weeks lasting 3 hours intensity 4-5 . I have taken it for 22 months. It worked right away.

Keep trying things, maybe revisit some of the more common preventives for longer times at higher doses. I hope you have relief soon.

Hi,

Welcome! You are not alone.

Has anyone ever mentioned the possibility that you might have New Daily Persistent Headache? I am just throwing this out there. I was diagnosed with it six years ago, though I have had it for nearly fourteen years. (I am only 30) It is quite refractory to treatment.

I have found that cycling through preventatives that helped, treating the pain, and avoiding anything that makes it works helped. I also have an implanted occipital nerve stimulator which really helps me. (Basically, this is like a pacemaker for the occipital nerves.) Other than that, my drs and I reached the point where we try to control the pain as much as possible, and go from there. IV Depakan helps for the really horrific ones.

Also, here is a link to an article on New Daily persistent headache and you can search the archives too.
http://www.helpforheadaches.com/articles/New-Daily-Persistent_Headache.htm

Painfree days,
sailingm

Thanks to all of you for the advice and support. I have read about the NDPH and feel that is prob more of a description of my pain rather than a migraine. It just is another uncharted diagnosis with no cure though to me.
I really appreciate my new friends here. It helps to know SOMEONE believes me (besides my immediate family) that I am not a hypochondriac and it is not...LOL..."just in my head!"

There are a few of us, NDPH people on this forum.

Martin

Hi Seastar-

If you are taking ibuprofen and fioricet daily, one concern would be medication overuse headaches.

As migraineurs, we have to be especially careful not to take painkillers or abortives daily, as we do run the risk of our migraine/ headaches turning into transformed or chronic daily migraines and/ or headaches. My advice would be to find a headache specialist who can work with you to start reducing those daily painkillers, as they really could be causing you more harm than good.

That said, I understand feeling desperate for relief; I find myself there often, but I do try to limit my abortives and rescues to 2-3 times a weeks, if at all possible. Sometimes it seems impossible, so I really understand.

On the cannabis issues, perhaps you could try ingesting it; I have found that it is more effective when I eat it rather than smoke it (plus smoke is a huge migraine trigger for me). Also, cannabis varies just like wine, so certain varieties of the plant are cultivated specifically for specific medicinal uses vs. recreational highs. It has to do with the levels of THC vs. CBD and other properties. Until it is decriminalized, it will be harder to determine and find the correct variety for your particular ailment.

We are all with each other in spirit, because migraines and head pain are so awful and those whom don't suffer really have no idea just what we go through.