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Neuralgia, cluster headaches, shingles or?

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charmaine04444
charmaine04444

I have been putting up with sharp stabbing electric shock type pain in my head for the past 18 years. I am 49. The pain osten starts in my ear lobe and affects only one side of my head at a time. Can get sharp electric shocks every couple seconds and then will subside for a minute or two before getting it again. These bouts can last days and sometimes weeks. Can move to temple or back of head and pain can stab in more than one area on my head but only one one side. I can then go months and sometimes a year and not have any symptoms and then out of the blue get it back again ...... sometimes it will come back on the opposite side of my head. Nothing seems to be a trigger. No reason for the pain to start. Often... but not always I get mouth ulcers at the same time or shortly after pain commences. Usually on the same side as the pain. Often the area of pain is very tender to touch. Occasionally the stabbing pain presents as an ear ache but then spreads to other areas of my head. But never my face. I do not get a rash or any other symptoms but the stabbing pain is debilitating. Drs have treated me with Tegretol and Gabapentin. Neither really help. They have diagnosed me with Trigemenal Neuralgia. Neurologist says its cluster headaches and prescribed Arthrexin which did not help. I have degenerative disc disease in lumber spine and mild osteo arthritis in cervical and lumber spine with muscle spasms. I don't know if this pain is related. I also contracted chicken pox at the age of 25. Could this possibly be shingles as one dr suggested???? ...... given the mouth ulcers and inflamed gum on same side as pain occurs? I have recently in the past couple of years also experienced similar pain in my lower ribcage but it is more bearable than when I get this pain in my head. I never get the pain in my ribcage and head at same time. A week in hospital 3 years ago with this pain in my head and no medication relieved the pain so I was given Ketamine. Hallucinations were horrible but the pain was gone. It was almost 12 months before I got it back again. It usually lasts a few days and disappears again. I had the pain same time as I coincidentally had to have a colonoscopy. I had been putting up with the pain for 48 hours prior however after the anesthesic and being out to it for the colonoscopy procedure... I woke up pain free. Three weeks later and the pain is back. Neurologists don't know what it is..... I have seen 3 over the years. All have different diagnosis. I am at my wits end and wondering if it could be shingles.... but without the rash. No dr has ever really done any tests for shingles. Can they test for shingles? Could shingles present with these symptoms? Anyone have anything similar? Any suggestions for easing pain? The only thing that helps with pain management is a hot pack on the pain site.... and pushing hard against the pain. My face gets sore and muscles in my face get tired from grimacing every time pain hits when it is on the side of my head. It is slightly more tolerable when pain stabs in back of my head.. heat seems to slightly ease the severity of the electric shock stabs of pain. The stabs of pain are only for a second or two.... never any longer but the stabs of pain may come every few seconds or every few minutes. An hour or two can pass pain free and I am relieved as I assume it is gone.... but often comes back. I never know when it will hit or how long it will last.... which affects my job.... my life.

0 likes, 5 replies

5 Replies

  • Anonymous111
    Anonymous111 charmaine04444

    Posted

    When you get the electric shock pains - where on your face are they? Are they always in the same place?
    • charmaine04444
      charmaine04444 Anonymous111

      Posted

      Never on my face. Always from hairline back. Ear lobe and temple are points closest to my face that I get shooting pain. Often starts in ear lobe and then migrates to temple and or top back of skull. Sometimes only one point on back of skull. Other times it will stab in one point as well as two or three other points. Always on one side and always the same points. eg..... May start in ear canal and then branch to back of skull and temple. The pain will strike at one point and a second later strike at another point and then another. The pain doesn't strike all points on my head at exactly the same time... but it is if the points are connected and the shots of pain go from one point to the other very quickly. When the pain is concentrated on one point only.... the skin gets very tender to touch. For many years the pain only occurred on my right side. Then I had a bout of it and it had moved to left side. Three years later and it is now back on my right side. These bouts of pain can last from a couple days to three weeks. This morning I woke up with more swelling and ulcer type things on the roof of my mouth and gums. I don't always get mouth ulcers with the head pain but ot happens often which is why I am wondering about shingles. I do not believe I have Trigemenal Neuralgia as the pain is never in my face.... only the side and back of my head and occasionally in my lower rib cage.

    • charmaine04444
      charmaine04444 Anonymous111

      Posted

      Thank you.... yes I have wondered this myself but the mouth ulcers have thrown me. Maybe it is just coincidental.
  • bonnie35620
    bonnie35620 charmaine04444

    Posted

    Wow. I am so sorry you are going through this. I know exactly how you feel. In the beginning of the same symptoms you describe, I had 3 doctors tell me that I didn't have shingles. Then I went to a dermatologist who said I did have shingles. By then, they felt it was too late to treat the shingles with antivirals, but they did give me 2 doses of Valtrex to help get rid of the mouth sores. Since then, I have been getting this on mostly a daily basis. The headaches are excruciating. I have had a shot in my head 2x's, but I don't feel any better. One headaches lasted 76 hours when I timed it. The mouth blisters come once every month and are very painful. The headaches come more often. I also get burning electric shockwaves of pain in my left side down 2/3 of my back. The neurologist believes that I had a case of Shingles that actually effected several nerve pathways. I have had med packs, gabapentin, amitriptyline, nerve blocks, and once I was prescribed tramodol. The tramadol was the only thing I found some relief with, but the doctors don't like to prescribe it so I only had been prescribed 60 pills. I only took them when I absolutely couldn't stand the pain anymore, but my quality of life is now shot. I have no muscle tone. I'm always tired, and now I slouch. I could manage the burning left back pain, even deal with the unsightly and painful mouth sores, but this headache is just ruining me. If you have found any relief or more definitive answers, please share as I will to you. Thank you.

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