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Excruciating Eye pain.

Posted , 4 users are following.

susan33651
susan33651

Hi, 

I have had issues with my health for over 10 years now, primarily joint and muscle pain and am under Rheumatology for this, however, just recently the pains I've experienced on the left side of my head/face have become much more severe and more frequent (just coming out of an episode lasting 3 days on and off!). Initially I thought it was Cluster headaches as the pain has centred on my left eye and often wakes me up. It is relentless and is like a super hot knife stabbing my eye and head/face with the added electric shock factor just for good measure. The most recent three or four occasions have been utterly horrendous and have also affected the teeth in my left upper jaw. Conventional pain killers don't work and neither does Morphine. My left cheek/upper teeth area feels numb/tingly for several days after an attack!?! I have no idea what triggers an attack, but I do sometimes find that my sinuses are mucky at the time....but not always.

I spoke to my GP who said it was most likely TN and he increased the Amitriptyline dose that I take regularly and prescribed some Co-Codamol, which combined with Ibuprofen have only really dulled it marginally. We did discuss Carbamazipine but he felt that the attacks are not frequent enough to try that yet!! I won't relate what I was thinking at that but suffice to say I'm at a loss! I plan to go back to him and ask for a referral to a Neurologist as I simply cannot tolerate the pain (I've been working with Lupus-type Arthritis for years and can cope with that, but this pain.....no way). 

I would appreciate any advice anyone can give regarding coping mechanisms you may have developed.

Thanks, and Happy New Year to all.

0 likes, 8 replies

8 Replies

  • Glor888
    Glor888 susan33651

    Posted

    Hi Susan,

    I'm so sorry to hear of your pain, I totally sympathise with you.

    Personally I would go back to your GP and insist you're prescribed Tegretol (carbamazepine). When I first had my bout over twenty years ago, all I had was stinging on the side of my tongue and the sharp electric shooting pains across my right lower jaw. That was enough for me to start off with. I took Paracetomol and when that didn't do anything I was straight off to the Drs. She prescribed me Tegretol right off there and then. There was no trial of this, that or the other, or considering how long I had it for, maybe a couple of weeks by then. After a while when I reached 1200mg a day and the pain was still there she also gave me Amitripyline at night and that did the trick.

    Everyone is different, therefore only you know the pain you're enduring not your Dr. It's worth a try at least. Yes, I agree re the referral to a Neurologist.

    Let us know how you get on.

    Happy New Year.

    Kind regards

    Gloriana

  • Valkyrie
    Valkyrie susan33651

    Posted

    I agree completely with gloriana. Tegretol at once and a referral to a Neurologist are essential and you must insist on this. If it helps, take along a male relative as doctors seem to take women more seriously if a male friend or relative is in the room. (sad isn't it?) please let us know the outcome of this.
    • susan33651
      susan33651 Valkyrie

      Posted

      Hi, Valkyrie and Gloriana,

      Thanks for your advice. I'm currently taking 50mg of Amitriptyline, increased from 30mg only a week or so ago, which is why I think the GP is not considering anything else just yet! It can take a while for these drugs to reach serum levels that are effective. I am actually a trained nurse and have no compuction whatsoever in ensuring I get the right treatment, the problem is that we nurses make terrible patients.......quick to look after others but less keen to take care of our selves! I think now, though, I will be putting me first.

      I have an appointment in the next few weeks so will discuss things further with him then.

      Thanks again.

    • Valkyrie
      Valkyrie susan33651

      Posted

      . I think it's very unfair of the Universe to give some of us more than one serious ailment in our lifetime, one is enough to cope with.

      I wish you the best of luck and a better year in 2016

  • justjane37
    justjane37 susan33651

    Posted

    It sounds like TN to me. It sounds just like the pain that I get sometimes. I was on Amitriptyline for over a year for TN and it worked very well for me. The increased dosage just might help. If it doesn't then definitely pursue getting an anti-convulsant like Tegretol or Neurontin. Some people need to take both a tricyclic and an anti-convulsant to control TN pain.

    I'm sorry you are going through this. The fact that pain killers don't work is a big clue that it is neurological. There is no rhyme or reason to the patterns of TN attacks. Sometimes there are triggers. For me the cold, wind, stress and my cycle are huge triggers. But, honestly, it comes and goes as it pleases. I will go through months of pain every single day and months of next to no pain.

    • susan33651
      susan33651 justjane37

      Posted

      Hi,

      Thanks, it is always appreciated when folks support those of us with these awful problems. I think, perhaps, that there may be a cosmic prankster out there sometimes!

      Best wishes.

  • susan33651
    susan33651

    Posted

    Have been taking the increased dose of Amitriptyline for a while now and have noticed a slight improvement............ with the muscle and joint pains I get due to CTD! Still experiencing the TN pain, although it is less severe, so perhaps it is worth continuing. I will discuss with my GP next week.

    Thanks again for all your support.

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