Headache every day for many months....
 

Hi. I'm new here, so I'm not sure if this has been discussed before or not. I've been looking around a bit, but if this is a repeat, I apologize.

I gave an overview of my story in the new members forum, and, bottom line, doctors have been looking for a diagnosis for me since I was suddenly ill this past February.

There are a variety of symptoms, and the neurologist at this time is focused on perhaps MS or some kind of epilepsy, though I've never had a seizure that I know of. I am having my 2nd MRI this week. My first was when I was hospitalized in March, approx 6 mos ago.

One thing that has been a CONSTANT, but not really addressed, in my opinion, is the fact that I have had a headache almost EVERY DAY since February. I am taking 500 mg of Naproxen a day, but even tho I can take up to 2 a day for the headache pain, I don't want to do that. Even taking one a day, it does NOT take away the headaches, it just makes them bearable.

Does anyone else have regular, daily, obnoxious headaches? I never really had headaches before, except right before getting my cycle, but that headache is nothing like what I've been dealing with now.

I don't know if these would classify as "migraines" or not. The greater focus has been on trying to find an overall diagnosis for the combination of symptoms I am dealing with.

I have had 6-7 concussions in my life (I'm now 39), most during my teenage and college years, though my most recent one was 6 yrs ago, from a minor car accident. However, I've not had regular headaches these past six years.... only since this "mystery" illness has started in February.

I'd appreciate any information or suggestions that others may have.

Does anyone know- are daily headaches a part of MS?? Thank you.

Headaches
 

Have a read of this. Might be something to think about.
http://www.nyheadache.com/blog/?p=128

My headaches (25+ years) were cured by taking magnesium. They were caused by tight neck muscles. This may not be your situation, but magnesium deficiency may well be a factor.

Has anyone mentioned rebound headache or medication rebound? (Google those terms to learn more)

Doc

No Doc, no one has mentioned anything to me about my headaches.... nothing at all! Other than my PCP rx'ing naproxen 500 mg 2 times a day prn, no reason or look into the headaches has even been explored. And, the naproxen, I'm taking 1 daily, usually in the morning, about when I get to work, so around 8 am.... and it's enough to take the edge off the headache to make it tolerable, but that's it. It doesn't ever seem to truly go away.

It does seem to be less painful when I am laying down vs sitting up..... but short of some kind of heavy duty pain meds, which then would not allow me to work cuz I'd be a space cadet, not sure what to do. Sometimes, usually at home, in the evenings or weekend, I get sooo sensitive to sounds (which is great when you have young children) just making my head throb. Funny think is that I"m hard of hearing... so I tend to take out or turn off my hearing aids, but even that doesn't help. (I never had headaches really, except little ones ladies get just before their cycle starts... hormonal ones).

My vision is slightly blurry w or without my glasses on (and I'd just gotten new glasses in January before all this "mystery neurological illness stuff" started in February. But the headache is not likely vision related (I'm a vision therapist, trained in vision and low vision at the master's level). Though I am being referred to a neuro-ophthalmologist, per my request, so hopefully I will have that appointment in the not to distant future.

I think it may somehow be related to the overall condition I've been dealing with since February which has yet to be determined. I have been working w a Neurologist (my 2nd neurologist).... had a bunch of tests, but so far, nothing "remarkable". So, more waiting and more testing.

I'll google what you've suggested. Thanks!! I can ask my PCP doc when I see her in a few week about what you've mentioned...... Amy Kate.

Thanks, Peter--- I'll check that out too!! AmyKate

Well, Doc-- in googling those terms, I'd have to say that I doubt those are what I have going on. I HATE taking meds..... and other than regularly rx'd one for depression, I don't take meds.... I usually just ignore and get past the pain.

Other than the Naproxen, as I previously mentioned, I don't take any other pain relievers. And that was rx'd specifically for these headaches. I do need to talk w my PCP about how it's not really helping anyways......

I'm not a tylenol, ibuprophen or any other kind of OTC med girl. Other than some vitamins and supplements I'd be happy if I never had to swallow a pill again!!!

But, thanks for the thoughts...... AmyKate :)

Headaches
 

Yes, definitely worth considering. I had rebound headaches from Tramadol.

Ok, it was a starting point from your OP above.

Did the headaches begin with, or just following, a virus of any kind?
Have you ever had Mono or other EB related DX?

Doc

Thanks Doc..... and something interesting too!
 

Thanks, Doc. I remember feeling like I was starting with a cold and I then did, on day 3 (with a weekend in there not counting) go to the doc's as I needed a note for missing 3 days of work. I was dx'd w a "virus" (the great catch-all for "obviously you're sick and don't feel well, but we have no idea why), but eventually was found to have a sinus infection and was ordered an antibiotic. That was mid February.

As far as I can recall though, the every day headaches didn't really start until mid March, after I'd been hospitalized for 5 days for supposed, but then not dx'd, Guillian-Barre Syndrome. And it's been a mystery ever since.

I did have Mono.... 3 mos after having my first son. Worked full time during it, against doc's orders (not due to the mono, but due to my 4 infections of my c-section), but felt I had to go back to work as my hubby had been laid off just then and we needed an income. I didn't realize what was wrong with me, and doctors just kept saying it was post par-tum depression and tried to put me on anti depressants. I refused, and kept going and seeing other docs in that practice until FINALLY, one thought to test for mono. Turns out I'd had mono at that point for 12 weeks, as I worked full time with a newborn whom I nursed/pumped so others could feed him at home. That was in the late summer of 2004.

So, my "current" blood work does show minor elevation of the antibodies for Epstein Barr.... but they accounted that to having had mono eight years ago.


Interesting thing....last week my hubby was so at the end of his rope w my not feeling well that he made me an appointment at the chiropractor's. (I'd been there before, but had to stop last fall due to $ issues).

Anyways, I went, and while I am still quite skeptical, I must admit that I do feel a bit better since Friday, and DEFINITELY have had more energy since then!

So, while I am NOT cancelling any of my other neuro appointments, I am going back to the chiro tomorrow evening, and will keep going, so long as it is helping. Can it solve everything? I don't know.... but if it does, I'll be glad but also very mad that something as simple as going to a chiro wasn't suggested earlier in my ordeal.

Now, am I feeling a bit better because of what the chiro did or because of some kind of placebo effect? I don't know. Does it even matter? I don't know the answer to that either. Have the headaches stopped? No, not yet.... Interesting, though. Interesting. Amy Kate

The reason I ask about viruses is that I've had illnesses (IBD) catalyzed by viruses, and I have a chronic headache condition (chronic tension type/migraine complex -- sudden onset) that is caused by reactivation of E-B (30 yrs after mono in my case) by a secondary virus.

To find this out, I had to go to a headache/migraine specialist (practice limited solely to chronic headache). The several neurologists I went to previously just weren't up on all the headache types & causes.

Doc

Thanks Doc.... I'll have to ask my doc about that too. Did you find the reactivation of E-B also to cause you to be incredibly fatigued, or was it just the chronic headaches?

I started seeing a chiropractor, at my husband's insistence, and the chiropractor is thinking he can help with the daily headaches, but so far, after several visits.... nope.

Interestingly, and probably unrelated, I've also been seeing a neuro-cognitive psychologist for some testing as my brain just isn't firing on all it's pistons, and hasn't been since whatever hit me in February. Well, the doc has completed the testing w me (five hours) and at the end of the testing this past Wednesday, he was grinning like a Cheshire cat! So, he did tell me that there is DEFINITELY something not going right within my brain (my words, not his) and that I'm not being a hypochondriac and that all this is not psycho-somatic. (I was starting to wonder, after all the "normal" test results from the Neurologist and all the "normal" blood work my reg doc did.) I tried to bait the Psychologist to give me a hint or something, but he shook his head and said I'd have to wait till next Wed (4 days to go) for his "diagnosis", as he needs to go through all the testings and add up the scores and put together the results to make sure that they confirm his suspicions (which was why he was grinning so.... I think he's pretty sure he already knows what's up, but wants me to wait so he can make sure the data confirms his ideas.) Which, truly is the right way to be.

It made me actually feel better to FINALLY hear a doctor say to me "yes, Amy, there definitely is something going on, and I think I know what it may be.", after so many months of " I don't knows".... and "well, that test came back normal"....... So, now we wait for Wednesday afternoon to see what the Psychologist has come up with. (I couldn't even think at the time to ask him if what he thought the problem was is treatable, or curable.... though he probably would have put me off till Wednesday for an answer to that question too.)

So, I already took a Naproxen for my headache today.... though didn't take the Naproxen until later in the day.... and I can tell you, my headache is still here, even though I took the med around 7 or 8 pm. Usually I have to take the Naproxen as soon as I get to work in the mornings, but today was Saturday, and I was graciously allowed to sleep in until after 1030 am (which is probably why I am writing you back on here at midnight).

Well, I do need to get some sleep soon, as we have church in the morning. Even if we plan on going to the "late service", I still have to be up and moving before nine am at the latest, though I have gotten up just before 10 and we've made it to the 1030 service.... but I hate to be so rushed!!

Thanks Doc..... so, are you still having chronic headaches/migraines?? Forgive me if you've already answered this (my memory isn't so hot lately either).... Have they found a solution to your regular daily headaches?? Is there possibly relief in sight for me? Have the docs found it for you?

Ok, well, good night. :) AmyKate

In my case it was headaches, though I'm hesitant to use say 'just headaches' -- they're debilitating.

Mine are not as frequent as they once were. Intensity can vary, depending on the type (cervicogenic or migraine), whether I guess correctly (they can fool me, or be both at the same time) and how soon triggering can be stopped and intervention takes place. PT played a part, as did time.

The worst part of the whole deal is the insurance companies dictating, in effect, how many headaches a patient is allowed to have per month by strictly limiting the number of prescribed pills. (We're not talking about controlled substances here - just triptans. :mad:)

There is hope, but I think chances are increased with headache/migraine specialists.

Doc

Hi Dr Smith and all-

My almost 16 year old daughter has chronic headaches, as she says "everyday." Went to Kaiser emergency room Sunday night when she had a severe migraine. Finally was able to get a doc to give her imitrex (which I take for my mirgraines). It WORKED!!! So now we are going down the road for a neuro evaluation. Her pc (pediatric) says that she really can't have imirex because she is under 18. My neuro in Kaiser (whom is now refusing to see her because she is a "pediatric", told me that he routinely give imitrex to kids. I'm at a loss. Any ideas on what I should say/ask regarding meds at her neuro appt or her pc (dont have an appt with either at the moment-waiting for her pc to call back)? I know they will run the gamut of all the neuro tests first. Dr-you mentioned neck muscle related headaches-she definitley has them. I'm not sure if they are the "daily" ones she has or not. I'm on the neuro site myself due to pn- Any thoughts or ideas would be greatly appreciated-

Judie

Killer headaches too
 

I too get constant headaches, OMG why won't they ever stop

Hi Judie,
 

Tell him/her what's been tried, what's worked, and what hasn't.

AFAIK, almotriptan (Axert) is the only triptan approved for use in adolescents 12-17 yrs.

Despite studies suggesting efficacy of the nasal form of sumatriptan (Imitrex) in adolescents, it has not yet been approved by the FDA for use on minors. Doctors who are using it with minors are doing so off-label.

Is your daughter keeping a headache log / journal? (Google same). If not, help her start one. It will help in identifying triggers and treatment.

Do any of these doctors specialize solely in headaches/migraines? IME, neuros who do know a lot more than regular neuros. You might also seek out a headache/migraine clinic.

Cervicogenic headaches are often characterized by tension going up the back/sides of the neck and blossoming into a pounding wall-banger. Early intervention works best when possible. These may or may not be related to migraine; the main difference being the kinds of medications they respond to. If they respond to Imitrex, they are likely migraine.

Part of the cervicogenic headaches I got related to my sitting at a computer for hours on end (bad posture -- especially neck & shoulders -- and building tension). The right PT helped me figure this out (after two others failed) and part of the solution was doing seated chin tuck exercises (Google same). I can't say it will work for every case, but bring it up with doctors. PT may help.

Doc

Headaches are a common symptoms of MS, but before your freak out they are a common symptom of simple, non-life threatening things also.

Concussions can be related to headaches from damage or inflammation, even at long latency from the initial injury.

Why does your neurologist think it is MS? As a temporary measure, try some of the capsacin creams (boswellian from Swanson) on your head, temples and behind the ears where the cranial nerves are near the surface. It takes a little while for it to work, but my (undiagnosed cause, 4 yr long) headaches are substantially lessened by this. It is also not likely to do you any harm.

If you are taking that many NSAIDS for that long, you could also have rebound headaches or medication induced headaches.

Hi amy
 

Sorry, I am new here and tried to catch up on your story, but I was wondering if any of your doctors have sent you for an MRI..you may have said you had in a previous comment and I apologize if I missed it...

Headaches
 

I've had a long history of headaches caused by neck/ back/ shoulder muscles.
Have at last found good treatments and cure.
Try a remedial or sports massage-that should see if it is muscular.
You need to then look for the cause. Look at neck usage- electronics, posture, laptops and so on. Bad news for necks!!!

Been AWOL.... but am back
 

Hi All-

I've been AWOL from here since September, and have just now found my way back here. I see there have been a lot of postings since my absence, and I will want to go back and read them and respond directly to any that apply to or were written to me. My apologies.

It's a long story.... but real quickly if I might.... about my "disappearance".

As far as where I stand NOW with my health and the headaches... April 20--- well, no further ahead than back in the fall, unfortunately. In fact, I was just informed yesterday that I am being terminated from my job due to my inability to perform my duties. (ouch!)

Hershey Neuro and Lancaster Neuro have all given up on me. (2 big neurological groups/hospitals in my area). They can tell me what I don't have: I don't have MS, I don't have Lyme, I don't have....... BUT they have no clue what IS still ailing me now, over a year since its onset. So the "mystery that is me still continues to be".

And, I think one of you asked this... yes, I've had many MRIs... and according the the Lancaster Neurologist, my MRIs are a "picture of perfection", so my symptoms and any possible dx/tx is a mystery to him. Which is why I am no longer seeing him.

I just started with a different doc in Maryland... he's an MD, but also more holistic. He wasn't phased at all by my condition/symptoms. Not perplexed one bit... unlike Hershey and Lancaster who are totally confounded.

So, I've had a bunch of blood work and other tests done with this new guy, and have my first follow up appt w him the first week of May. I also have appts set up with a Neurologist/Neurosurgeon which he recommended, as well as an Axis Chiropractor. I've not yet seen either, but the Neuro also works for Johns Hopkins, as does the MD, and the plan seems to be to do a functional MRI to see what areas of my brain aren't acting right. But, it'll be a while till that happens.

I still have the never ending, always annoying headache, short term memory loss and processing difficulties. My balance has improved for the most part.

The new MD theorizes that because I've had so many concussions (at least 6 that I know of.... in my life. Due to sports injuries, falls, car accident... those sorts of things) that my brain has become weakened, and is less able to withstand any kind of attack. So he postulates that perhaps what I've been dealing with is some kind of viral encephalitis/meningitis, or perhaps even an autoimmune encephalitis. But again, it will take time and more tests to see if he's on to something or not.

Again, it's been so long since I've been on here... and a lot has occurred during that time gap.

Wow, I haven't been on here since September!! Well, I know why I disappeared. Hershey thought that my headache was due to low cerebral spinal fluid, that it was leaking perhaps from a spinal tap I had last March (2012) when I was initially hospitalized for this mystery. So they ordered a blood patch for me. Well, long story short, they screwed up the blood patch, and didn't put the blood where it was supposed to go (intra-dura) but rather extra-dura, and thus had a large amount of blood put into me whereby it congealed and was pressing on the base of my spinal cord and nerve roots. So much so that I was practically paralyzed.

I was literally in so much pain from that, that when I'd get an extra stab of pain while walking, I'd collapse. It was horrible.... and took a long time to resolve itself, once the blood finally was absorbed into my system. I did spend a few days in Hershey Med Ctr on the neurosurg unit.... but didn't have any surgery... was just monitored for any lower body paralysis. It was horrible. I ended up using a granny-walker.... and still have a handicapped parking permit yet. But, it was cuz of that goof that I saw a different Neurologist in Lancaster... who was good, but he finally told me he can't figure out what's ailing me (once all that horribleness subsided) and told me to get into U of Penn or J Hopkins. So... that's why I disappeared from here for so long. I was pretty much totally incapacitated. Couldn't drive or anything for like 7 weeks. Basically confined to bed and going to PT a couple times a week- talk about painful!

So... sorry for the big delay. Now that I've found my way back here I hope (and intend to) to stick around! :)

Now I just need to get all caught up with stuff on here!! :)

Amy Kate

Hi Amy Kate! So sorry to hear that you are still suffering and that you lost your job...that really stinks! It looks like you might be on a helpful path now though, so that is good.

Funny thing is that I have only looked at the Headache forum a few times. I am mostly on the RSD/CRPS and SCS and Pain Pump forums. I am 46 and have suffered from headaches since I was a little kid. I have, what I call, a baseline headache every single day; I don't remember a day without it. Then I have days that the headache is much worse and sometimes it goes to a migraine. All of the doctors I have seen over the years tell me that my headaches are hereditary, my mom, dad and some of my siblings have suffered from migraines. Now I wonder if the concussions I have had in the past contributed to mine (I have had four that I can remember). I have had many MRI's, CT's and a CTA (recently). They have only showed the markings of a migraine sufferer, which is good that nothing else showed up.

I hope you can find relief soon!
Nanc
:hug: