Constant pain like an "ice cream headache"

[Carebear]

Dear friends,

Once again I come here for your opinions and advice.  I have been experiencing a sensation similar to brain freeze or an ice cream headache, but the thing is, I haven't consumed anything cold.

The pain hangs around for most of the day, usually vertical on the right side of my forehead, above the eye.  Sometimes it runs horizontal across the forehead.

I do have a lot of neck, shoulder and mid back pain too as a result of muscle tears.  The muscles are stiff and tight so perhaps this is the cause.  Something is pressing on or irritating a nerve?

If a breeze touches my forehead it can trigger the pain.  So can air conditioning.  As it is, I wear a scarf and jacket when I go into public buildings because they are generally so cold.  But wearing a balaclava may be frowned upon.

Any thoughts?  I see my doctor next week and will mention this of course.  I can't tolerate drugs like Cymbalta so where would that leave me?  Thanks, friends.

[eija]

Trigeminal neuralgia?
http://www.patienteducationcenter.org/articles/trigeminal-neuralgia-tic-douloureux/

I hope not. It's nasty - my dad had it. I believe his was eventually treated with epilepsy medicines.

[Linda196]

Eija beat me to it! The telling line in your post was

If a breeze touches my forehead it can trigger the pain

. Be sure to tell your doctor that.

[Carebear]

Thank you, Linda and eija, for confirming my suspicions.  This type of episode happened about two years ago but disappeared as quickly as it came. So I dropped it.

I have tried anti seizure medications in the past with unlivable side effects so that concerns me.  However this needs to be addressed for sure. 

Darn it!

[quietdynamics]

Carebear sorry you are having head symptoms/pain.. affecting you.

My own experience with head pain ( more severe than any rare headache  I ever experienced and of longer duration) is the symptom that  warranted a visit to ER and the care of a Neuro.

Like you I have a Dx of fibro, which is more than simply the 'tender points' and now Drs. view quadrants and movement of pain, intensity, etc.

This may or may not help you.. my own theory from my body/speak, symptoms.. is that the chronic inflammation (including CNS) from SJS combined with Fibro.. Flare can initiate pain loop. Pro-inflammatory cytokines: "Although fibromyalgia (FM) is known a non-inflammatory condition, emerging data suggest that FM has an immunologic component. The levels of several inflammatory cytokines are abnormal in patients with FM and may play role in its pathogenesis." (2015)  (Fibro has been noted in studies can cause dry mouth as well.)

So in a flare state which stress-trigger comes first? Fibro flare into SJS Flare or the reverse or does it matter?
Both (or which ever condition one has needs) to be managed to avoid this possible loop scenario.

Allodynia: refers to central pain sensitization (increased response of neurons) following painful, often repetitive, stimulation. Allodynia can lead to the triggering of a pain response from stimuli which do not normally provoke pain.[1] Temperature or physical stimuli can provoke allodynia, which may feel like a burning sensation (wiki) https://en.wikipedia.org/wiki/Allodynia

Some of the symptoms can feel like 'electric shocks in brain' (been there), sensitivity to light, temperature, sound, scents, chemicals, etc.
Here is chart of some meds used ( I use a combo .. we are all individual).
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2664546/table/T1/
And the study.. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2664546/

I hope the information helps you and the Dr. is able to begin to assess.

[ktfabian]

Carebear,

It was because of these types of headaches that I was diagnosed with Sjogren's. I've had them since about 1999-2000. Sometimes I have them every day, all day, and other times I get a break for a week or two.

I was sent to a doctor at Wills Eye Hospital in Philadelphia because my family doctor thought a small lesion behind my right eye could be causing the headaches. The doctor there took one look at my eyes, did a Schirmer's test and told me the headaches were because I had Sjogren's. He suggested I have my rheumatologist run the blood work when I got home, and he was right.

I see a Sjogren's specialist in Philly who started my on Rituxan infusions, which originally helped with the headaches, but not as much now. I'm also behind on my infusions because I had foot surgery in May and am having surgery to remove a bad morphine pump and put a new one in on Monday. My infusion was due in early June.

In addition to these headaches, I also get migraines and cluster headaches, both of which are different from each other and this other headache.

I wish I could tell you I'd found something that makes them go away. Sometimes Fiorcet helps, but the higher my stress level, the harder it is to get rid of the headache.

Please don't assume your headaches are Sjogren's related. Talk to your doctor. But if they can't find any other reason, Sjogren's may be to blame.

Good luck, I hope you find a way to get them under control. They definitely are NOT fun,
Tracy

[irish]

I haven't read all of this thread but just wanted to add that I went through several years of face ache and head ache that drove me nuts. I spent a lot of time on the couch with a warm pack or warm wet pack across my nose and both cheeks and over my forehead. Come to find out years later Sjogrens was diagnosed and when I started using a humidifier near my chair the pain was much less.

I think it was the dryness in my sinuses that were causing all the pain. Hard to tell someone that you have pain in nose and behind the nose. Good luck. Irish

Also, just to let you know that I would wake up during the night with dryness and finally figured out that if I wear one of the face masks that are rectangular and soft blue (Walmart has them 20 masks for about 3$) while you sleep the air you exhale will be rebreathed and it contains moisture which helps to keep your nasal passages more moist. I know it is weird, but it works. Irish

[jazzlover]

While waiting to see the doctor, you could try anything to reduce inflammation. I take Curcumin for inflammation and it really helps.

[Navigator]

it could be trigeminal neuralgia. I had that when I had my first wicked flare. Back of the head to the jaw and pain moving around the neck and shoulders.   After a week of shear heck it resolved itself but then I was not on any meds.  It left behind hearing loss.  Can you take aspirin? It is an inflammatory issue.

[Deb 27]

sorry about the nasty headaches carebear. I was thinking trigeminal neuralgia as well. I hope you can find a med that will help.  Are you going to call your doctor? It sounds very painful.

[Carebear]

Thank you everyone for your kind replies.  I have an appointment later this week, so that will at least get the ball rolling.

The pain as of now has decreased in intensity and frequency. Yippee!  I would have posted a few months ago if I knew it would make this pain lessen!

I suspect trigeminal neuralgia as well.  It was mentioned by a neurologist during my last episode a couple of years back, but it went away and I didn't bother to follow up.  I'm bad, I know.  Like many of you, I've grown so tired of all these appointments and only see a doctor when I must.

If I learn anything I will let you know.