Greetings! New member, old headache.

Hi everyone. I've got quite a story, but I know I'm not alone. If you have time, please give it a read and offer some advice or words of encouragement!

I’ve had a constant headache for about 14 months. It began with a dull ache on a Monday, that tapered off after a couple days, then escalated over a couple more days to when I had tingling in my arms and a lot of pain. Went to the ER and received spinal tap, CT scan, MRI, and many blood tests. Discharged with migraine "diagnosis" and pain pills (which didn't work). For about two weeks the pain was pretty intense and I had some light sensitivity. After about two weeks it tapered off into a dull ache that has been in various places all over my head, but rarely in one consistent place.

It's now been over a year and the pain has gotten neither better nor worse. It's generally annoying, but doesn't prevent me from working or performing (I'm a musician). On a scale of 1 (no pain) to 10 (excruciating), the pain stays between 3 and 6 at the most. For some periods it may occasionally become "less bad" (between 2 and 4) but not "better." I do have very rare (once every month or so) moments that last less than a minute of less symptoms, or even almost clarity, but there is no pattern and they don't last.

I’ve seen a standard physician, an emergency room, neurologist, chiropractor, homeopathic doctor, physical therapists, massage therapists, and an acupuncturist. While I do currently have a high anxiety level and am flirting with depression, this has largely set in over the last few months due to the persistent symptoms. Nothing specifically changed at the time that the symptoms began and cannot think of anything that changed at that time.

There have been some interesting changes as of late (listed below), so I thought I'd pick someone else's brain and see if they could help me with my own head.

Symptoms include

* Chronic 24/7 headache. Dull pain, at times tingles. Never stabbing or debilitating, but also never ceasing. Most often aggravated by driving or loud noise.
* Some upset stomach and indigestion (I notice some frequent burping...)
* Panic attacks (perhaps three full on)
* A few times (six or seven) have felt disoriented in the morning (knew name, birthday, social, phone number. Couldn’t recall what I did the previous day or it looked like outside my apartment.)
* symptoms generally and consistently aggravated by driving or loud noise
* Ringing in ears (of course, I am a musician)

New symptoms in the last month or so

* Mild panic episodes typically before entering full sleep
* Sore arms around the biceps and most often right when I lay down to go to sleep. (perhaps a panic attack symptom?)
* Great difficulty getting to sleep. Rarely sleep through the night
* Cloudiness in head. Like my perception of everything is down to 80%. This could be due to the lack of sleep.

Treatments I’ve tried

* Cutting gluten and dairy (two months)
* Ibuprofen (generally ineffective)
* Increased exercise
* Increased hydration
* Cutting caffeine
* Cutting alcohol
* Acupuncture
* Physical therapy (soft tissue massage, laser light therapy, spinal traction, stretching)
* Chiropractor
* Massage
* Cranio-sacral therapy
* Various seizure and migraine medications prescribed by neurologist
* Xanax (may have helped panic attacks, but made me feel like absolute crap)
* I have gotten away from my apartment/room for longer than a week on at least two occasions with no change in symptoms.

Tests I’ve had (that came out negative)

* CT scan
* MRI of head (contrast and non-contrast)
* Lumbar puncture (spinal tap)
* Multiple Sclerosis
* EEG
* Many blood tests
* TMJ test

Problems or symptoms I HAVE NOT had. May help narrow down things.

* Vomiting
* Full out fainting (though I have gotten light-headed on a couple very rare occasions)
* Fever
* Sinus infection or inflammation.
* Complete numbness in any limbs
* Difficulty speaking
* Loose stool
* Debilitating or stabbing pain
* Loss of cognitive function or motor skills. Slurred speech.
* High blood pressure (always normal, taken several times)
* Low blood sugar (typically normal, taken several times)
* Head injury or any history of headaches

Personal theories:

* Perhaps digestive. Does anyone know of digestive problems that cause headaches?
* The pain hasn't really gotten worse or changed in any meaningful way. That makes me think it could be a back or muscle thing.
* I get the feeling the problem likely isn't above the neck. Many negative tests and ineffective medications have convinced me of that. I've had no x-rays below the neck, however...

Ask more questions, make suggestions, give me a pep talk. Anything helps!

what meds are you on??

have you had your thyroid checked??

dear J, most of the practitioners you listed are the 'alternative' types. that was my story, also: i didn't trust doctors and western medicine, so i went for more than 25 years with nary an aspirin, or a diagnosis.

this is INSANE, i now realize. there are doctors who can help you. real, medical doctors. neurologists would be the logical type to consult, except so many of those are beyond arrogant.

if you ask around to friends and family for a neuro referral, and if you are able to afford more than one consultation, please try to do that.

neuros should be the first line of defense, as they have studied the workings of the brain for the longest time. (but nobody really understands the brain, and we have to be prepared for many different "theories").

if a doc is humble and caring enough, he/she should be able to say "i don't know what's going on, exactly, but if you'll stick with me, we can probably find help for you". or something like that.

drugs can help you get through life, if you find the proper one or combination thereof. therein lies the rub. narcotics are usually a last resort. there are some standard preventives and abortives which a savvy doctor should have you try, first.

be prepared for a not-so-quick process, as this disorder of migraine is definitely one of the mysteries of medicine. some of us here have had it over 40 years. but we are still truckin' along through life! dianne

J_, something to think about, could some of the medications be the cause of some of your symptoms? Several forum members have used Lamotrigine and has caused these symptoms that you are experiencing:

1) Some upset stomach and indigestion (I notice some frequent burping...)
2) symptoms generally and consistently aggravated by loud noises. * Ringing in ears (of course, I am a musician.

As to Cloudiness in head. Like my perception of everything is down to 80%. This could be due to the lack of sleep. you are probably right. That is exactly what a lot of us feel, when we lack sleep. Again, some of the medications, that I tried, also caused this problem.

Some of us have been checked for Vitamin D deficiency and have had some relief, when we have gone on Vitamin D therapy under a doctor's care. Some doctors believe that chronic pain patients have Vitamin D deficiencies. Me, my sleep improved with the therapy. For the indigestion, I've had some success with probiotics.

Also, are you statins, this medication could be the cause of some your symptoms?

Just some thoughts for your consideration.

Have you been tested for Lyme disease? All of your symptoms could be attributed to Lyme. Even if you have been tested and it is negative, the tests are unreliable. If there is any chance you may have had a tick bite, you might want to research it.

I have the chronic form of Lyme plus other infections from the tick bite and have had all of your symptoms at some point. My migraines have gone from daily to 7-15 days/month with 4 years of antibiotics. But, I had hormonal migraines before I got Lyme. I hope you find some answers soon.
Hugs,
Cindy

Hi J

Welcome. You have my sympathy. Here are a few ideas to consider.

1. Tingling. Where does the tingling occur? I had tingling and numbness running down my arm to my fingers. Turned out this was due to a bulging disk in my neck. I wad treated by an orthopedic pain specialist with cortisone injections in my neck (c6). This took care of the tingling problem, never to return. It did not take care if the headaches though which continued to get worse and more frequent. So a pain specialist might be one avenue to explore.

2. Ringing in ears, loud noises trigger headaches. I ended up with this too. It came on after taking Lamotigrine as a preventative, however many other drugs can also cause tinnitus and hyperacusis (over sensitivity to sound). Like you, it was really a problem because it got to where any loud noise, particularly anything over a speaker was excruciating and would bring on a migraine. I found an excellent resource on http://www.chat-hyperacusis.net/ They have good links to doctors who specialize in hyperacusis and other useful info. TRT (tinnitus retraining treatment) worked very well for getting rid of this problem for me. It's a bit expensive to buy the ear devices that retrain the sensitivity level of your ears, but it does work wonders.

3. You dont say whether you are male or female. If female it is worth looking into possible hormonal changes and progesterone link. I got significant relief from going this route after everything else the doctors tried had failed

Hope some of this helps.

Definitely look into Lyme and New Daily Persistent Headache. I have the NDPH diagnosis and have wondered for awhile if its Lyme...but I'm not ready to pursue that yet due to cost (Lyme Literate Drs don't take insurance and the average doctor who goes by the current standards can't diagnose/treat it).

Is there any reason you haven't seen a headache specialist or at least a neurologist? That would be my next step.

I thought there was mention of having seen a Neuro when I read the post. Maybe I am mistaken. If YOU think you might need the gastrointestinal area checked out, then do so. Sometimes we just KNOW things and maybe there is something going on. I will say that some medications can cause those symptoms though. I had sudden onset and for a while saw an Internal medicine DR, A specialist in stuff like parasites and other odd things. While the tests they ran were rather...strange, as far as what I had to do, it was a way to rule things out.

Possibly the Neuro you saw was not the right one for you and I think you should give that another shot. I am glad though that your tests were all negatives!! Good Luck!

You're right that the poster mentioned seeing a neuro. I overlooked it initially. It can be very helpful to seek out a migraine specialist because some neuros are more knowledgeable than others about our condition. Here are two links that list recommendations:

http://www.migraineresearchfoundation.org/resources-links.html#doctors

http://www.healthcentral.com/migraine/headache-specialists.html

Hi,

Welcome to the forum- you will find a lot of great people and wealth of information and support here.

1. I know I am reiterating what others have said, but definitely either go back to the neuro or see a new one who is also a headache specialist.

2. You have already tried a lot of things- the elimination diet, cutting caffeine, etc that might help headache. Did they help at all. Sometimes, this is only way to find out about triggers. However, as I found out, having a constant headache makes it difficult to identify triggers and I wasn't able to identify any triggers other than loud noises, flashing lights, being tired, until my first period of remission.

3. Did the dr offer anything else other than xanax? There are a many preventatives and abortives worth trying. If the panic attacks are bad, there are also other anti-anxiety meds often used for headache- Klonopin is one. I'd definitely get in with a new neuro.

4. Since you can pinpoint when your headache started, definitely look into New Daily Persistent Headache. It is one of the most refractory types of headache to treat, but it can be treated. There is some good information about it here:
http://www.headaches.org/education/Headache_Topic_Sheets/New_Daily_Persistent_Headache

Anyway, welcome again.

pain free days,
sailingm