Post hepatic occipital neuralgia with trigiminal involvement

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Have had this problem for over 12 months since a severe bout of the flu.

I have been on lyrica... Dreadful side effects and no pain relief. Now I have slowly titrated up on gabapentin starting with 100mgs daily to 1200 mgs ( over 3 months)which at this level made me constantly nauseous so I have slowly dropped back to 1000mgs daily(300, 300 and 400). The nausea has gone but I am still extremely tired and still have the pain... If anything I think it is worse. I will not go down the benzodiazepines or opiate road but I an really over it. Meditating and trying to stay positive is my daily deed but it is difficult. Anyone suffering with a similar affliction?

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  • Posted

    Hi Doll57,  So sorry to read of your suffering.  Can you tell me who diagnosed your condition and what sort of pain you have.  I have been in chronic pain for almost two years and have not had a proper diagnosis.  Hope to hear from you.  Take care
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    • Posted

      Hi Joyce 12429

      I am from Australia, not sure where you are or where this site originates from actually.

      My symptoms were vague, but from the very moment I got the influenza virus ( which was a very nasty flu), my head felt full, cloudy and throbbing, but the main symptom was on the right side of my hard palate and above my teeth. It was a constant throbbing that just got worse. I saw Ear Nose and Throat specialists x 2 - all clear. After 8 months the GP thought it may actually be a nerve problem and not sinus. No analgesia of any kind would help. He started me on Endep 10mgs- 20mgs nightly for 5 weeks with no relief. He then thought it may be a type of migraine and I started on Indocid for 10 days again with no relief. It was then I asked for a referral to a well known neurologist who dealt with headaches and cranial nerve problems. While I was waiting to see him, the GP commenced me on Lyrica..thats when the pain and anxiety kicked in. What a horrible drug ( anti convulsant). I saw the neurologist who, after an MRI and CT diagnosed me with the above affliction. All the scans and MRI were normal and he felt the virus I had, along with a low immune system ( I had a lot going on at the time) caused the varicella virus ( I had a history of herpes cold sores and shingles) to activiate and damage the nerve impulses in my brain. So I have not been working and trialling these anticonvulsants - currently Gabapentin. The result is I still have the discomfort 24/7 - although i am fortunate that once I am asleep I sleep long and well with no interruptions. I am still tired the next day but that is due to the Gabapentin. 

      I am not sure if any of my symptoms are similiar to yours Joyce but I would suggest seeing a neurologist for a diagnosis. 2 years is far to long without a diagnosis. At least then you can make some informed choices as to what you want to do. 

      I have decided that I will very slowly taper down my Gabapentin ( although I believe it isnt nice) as I just don't want to be on something that plays around with my neurones and isnt really helping. 

      One day at a time. It is a journey and daily I try to see what good this may have in my life. 

      Good luck and stay in touch. 

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    • Posted

      Hi doll57,  Firstly can I apologise for the delay in replying but I didn't get notification that my thread had been answered.  I too started of with a horrible malaise on Christmas Day 2014 which left me with a pain in the right side of my back and a terrible soreness if my back touched anything such as sitting back in a chair.  Despite MRI and full body bone scan, visits to two or three specialists and umpteen private practitioners who could find nothing wrong they decided it must be neuropathic pain and started me off on various anti-seizure and anti-convulsants drugs which did nothing to alleviate the pain but left me feeling like a zombie.  I am currently on morphine patches and amtryptyline at night but to be honest the pain is almost unbearable.  It seems to me that the diagnosis of neuropathic pain (in my case) was given because they couldn't seem to find anything else to blame it on!!  However, I have now insisted on a referral to a neurologist and am due to see him on the 20th December.  My life has been horrid for almost two years and I truly believe that pain is the body's way of informing us that there is something wrong.  I need to know what that is so hopefully my forthcoming visit might uncover it.  Oh!  For a pain free existence as I've almost forgotten what it was like.  I do wish you well in your search for the correct medicine regime and hope that someday soon you'll feel well again.  Kindest regards xx

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  • Posted

    I haven't taken any of these drugs but have a friend who took lyrica and stopped because of the dreadful side effects and I also read a lot of patient reviews on it because it was suggested to me, i decided no. I am starting to think the opiate road is a real option. I know there are side effects but I don't think they are as bad as some of the antidepressent drugs like lyrica that they prescribe for nerve pain

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    • Posted

      HI Jane,

      What is your diagnosis?

      I was very hesitant before staring Gabapentin. I knew a little about this stuff, but I was in such a state with the constant throbbing and pain, that I thought I would try. It really is a personal choice and I do regret it now, but I thought it just may work as it is the drug of choice for post herpatic neuraligia I believe. 

      Opiates do have side effects and are very addictive, so again I would think carefully, but I do understand that when you have constant pain you really have to do something.

      Good luck

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    • Posted

      I have a bulging disc at my C8 which has irritated the nerve and the pain is 24/7 but while also dealing with all the side effects taking statins have done to me I am certainly not taking lyrica or anything in the family of anti depressents. I know opiates are addictive but I need something and there really has to be some other  option.
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    • Posted

      Oh that's a little off putting-that the body gets used to the gab! I am down to 800mgs daily now and have reduced 100 mgs every 2 weeks. Since I have hit 800 the pain( which was never relieved by the gab anyway) seems to have gotten worse. I will remain in this amount until I see my new neurologist. Good luck all!

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