Fire inside my head 24/7 EXCRUCIATING PLEASE HELP!!!

[CeresIrene]

Starting on January 14th, 2014, I developed what I would describe as an uncomfortable burning pain inside my head. The first couple of days, it came and went and was mild, but after the first few days, it became constant. It is now with me everyday. 24/7. ALL. THE. TIME. It's there when I go to sleep at night, it's there when I wake up in the morning. What's worse, the pain has been gradually intensifying with each passing day. It is now February 14th, which means that I have been dealing with this pain every SINGLE day, for a solid month. I have made TWO trips to the ER, I have had both an MRI, and an MRA. No tumors, no aneurysms, no signs of Multiple Sclerosis. I have no other symptoms that I can note. No changes in vision, no disorientation or dizziness, no fevers...nothing. I am a 25 year old Caucasian female with no family history of autoimmune diseases or aneurysms. I cannot figure out what is happening to me. At times, the pain is excruciating. It feels as if my entire head is on fire, as if someone literally poured kerosene on top of my head and lit a match. It has become the focal point of my life. I am trying so very hard to live my life, but with the pain gradually increasing everyday, I know I will come to a point where I will cease to be able to function altogether. I want to stress that this pain is ALWAYS there, there are no "breaks". Never any period of time when I don't feel it. It is the first thing I feel when I wake up in the morning, and the last thing I feel before I fall asleep at night. I have had multiple panic attacks over the last month because of the shear fear I have felt over this. I have been terrified of what it could be, but have calmed down substantially since tumors, MS, and aneurysms have been ruled out. I am still waiting on an appt with a Neurologist. The neurologist's in my area are so booked up that even though I got the referral to see one a week after this started, my appointment isn't until February 19th. I am scared that they will tell me there is nothing they can do for me, but the pain is awful. It doesn't fit the bill for cluster headaches, either, as they do not wake me up at night, do not come and go, and is just simply a constant searing, burning pain. No matter how much I google and search, I cannot find anyone who has experienced this exact thing before. I need help. If there is ANYONE out there who has experienced this and gotten a diagnosis or treatment, please let me know. AGAIN, I am experiencing NO other symptoms.

[Eddie1994]

A new treatment is available and it is not medication.  The FDA has approved a device called Cefaly.  It is approved for migraines in the US.  In Europe and Canada it has a secondary use and adapter for occipital neuralgia (hopefully very soon the FDA will approve that use as well.)  You can find more about this treatment on line by searching on the term Cefaly.

[Dmavrik]

And CeresIrene

Thank you all for posting all this, I am experiencing the same thing these days. The first ER trip was last night and while they gave me pain meds and a medication to control my blood pressure (it was 208/113) the pain stopped for a while and then returned with a vengeance. The ER gave me percocet and clonodine (.2 mgs)

[Eddie1994]

Sorry, I logged out while noticing your comment about no MS.  If there is nerve damage somewhere (and it would only take a small stretch in a critical location) to cause abnormal sensations.  The only way to diagnois nerve damage would be with a type of nerve conduction test such as a SSEP or EMG.  I would imagine that the SSEP would be more appropriate for the cranial nerves.  Hope this helps.
Ed

[Eddie1994]

One more thought based on a recent conversation with a medical professional.  The nerves along the exterior skull actually innervate  to the lower rear of the skull base to enter the spinal nerves.  So while it seems the pain is spread over your head, it could be triggered much lower towards that back of the neck and skull.  I offer this as another thought for helping you.

[Eddie1994]

The medication prescribed is cortisone and help control inflammation.  I can't help you here except to suggest you follow your Doctor's direction.  It's encouraging that the cortisone is helping and to some degree that may help identify what could be triggering the pain.  I can tell you that the medication in its injectable form would be used for joint and back pain among other uses.  Keep your Doctor informed so they know how to help you long term.
Ed

[CeresIrene]

I can't think of anything like that that I may have been exposed to, but then again, as you suggested, it could have been in passing and I may not have known about it. The medicine I was initially prescribed was "methylPREDNIsolone" spelled exactly like that, with the capital letters in the middle. It was a 6 day dose back, starting with the largest dose on the first day, and then decreasing in dosage each day until it got down to one pill, on the last day. As for results, it did NOT entirely get rid of the pain, but DID make it subside SUBSTANTIALLY. Enough to where it's more of a background sensation, rather than an un-ignore-able pain. I am still following up with various doctors and my GP.

[Eddie1994]

Glad to hear you were given a preliminary diagnosis.  Tyr to think back over the last few months if there was anything unusual that may have occurred.  For example, is there a heating source change, have you had any accidents or falls head or neck injuries, or have you been exposed to new cell tower construction or alternatively could you have been exposed to retail store anti theft alarm systems - by this I mean the antenna towers usually located at the entrance to retail stores that are used to catch articles that haven't been paid for.  This doesn't mean to say you were involved but may have been innocently nearby one that went off?

Also be alert when you are around heating devices like electric or gas stoves as these can also trigger episodes.  Also, can you describe what medication was initially prescribed?  Your information could be helpful to many others.  Best regards.
Ed

[CeresIrene]

So, as of right now, they're treating it as Occipital Neuralgia, as Ed suggested. They never gave me an "official" diagnosis, but after the Neurologist reviewed my MRI and MRA, as well as my blood labs, she said she felt that what I was experiencing was "non-life threatening" and said that the round of medication she was going to put me on usually fixes the problem for people experiencing symptoms similar to mine. She said that IF the round of meds she's putting me on doesn't work, then she's sending me to a pain specialist to get an Occipital nerve block injection, and if THAT doesn't work, then she wants me to come back to her to investigate further into what could be going on. So that's where I am at this point. So far, I'm only one day into my round of meds, so it's hard to say if it's ultimately going to work or not. I will post back if it does, and will update everyone on the next step I'm taking if it doesn't.

[CeresIrene]

Thank you very much for that lead. I have looked up some information on the condition and it seems like a possible candidate for what's happening to me. My Neurology Appt. is tomorrow, (finally) and I plan to talk to the Neurologist about this possibility. Again, thank you so much for offering up this suggestion. No one else so far has come forward with any type of solutions or answers and it's been so stressful. I will report back with any solutions or answers I find.

[Eddie1994]

Occipital neuralgia comes to mind as a possibility.  Search the term and see if it is consistent with what you are feeling.  If it is consistent with the symptoms you might mention it to your Neurologist and help them hone in on how to better help you.  Let us know what you find out.
Ed