has anybody experienced their TN pain worsening over time?

Posted , 4 users are following.

Hi All .... this is my first post here.. I've had TM for 6 years now and it has gone in and out of remission many times.. I've had an MRI scan and all was clear so cant avail of decompression surgery, also tried every medication on offer but nothing has made any lasting effect on the condition... I recently noticed that terifying stab of electrical activity in my right temple starting up again and it's gradualy got worse each day for the last few weeks but with the added exception that this time it is far more painful than I've ever had it before. I have a pretty good tolerance for pain and I've been able to manage all the past episodes reasonably well but this time it feels different, like it's kicked into a new state or level where the pain is just beyond anything I could imagine anybody being able to cope with !!! it is literally bringing me to my knees everytime it strikes and all I can do is drop to the floor holding my head and try not to cry out too loudly sad  it's taking all my energy to try and not be in constant terror of the next shock..  I have also developed a strange sense of pressure and movement in the nerve all around the temple / ear / eye area which arises and lingers for a while and dissipates after electrical strikes  ...

has anybody else here had this experience with TM of the severity of the pain worsening after a couple of years? and / or developing  a strange sensation in the nerve even when there's no pain ?  

sorry for the long post and thanks for taking the time to read, if you are suffering TM right now please know you are not in hell alone !

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  • Posted

    I experienced the very same episode about a month ago.  The attack, very different from other attacks, came on suddenly and brought me to my knees.  I also experience the strange pressure around my temple and eye.  I went to see my neurologist and he suggested taking an additional Lyrica (150mg) at bedtime.  I did that a couple of times, but did not increase my dosage on a regular basis.  The problem seemed to go of its own accord.  Once in awhile I will feel a pressure in my temple near my eye as if the muscles and skin is drawing together.  It is not painful, but is not welcome because that was a prelude to the terrible episode like yours.  So far I have had only one episode like thate.  That episode was a number of attacks over a 3 week period when alas it subsided.

    TN pain, if nothing else, is an oddity.  I have lived with it for about twenty years although it wasn't diagnosed until 2000.  My TN has changed over the years, but I have had two MVDs and have taken several medications, some of which worked, with others either ineffective or causing side effects too hard to handle.  Does TN get worse over time?  I have read various articles that say it does.  An attack always seems to take me by surprise.  On the other hand I am always on guard (as if there is anything I can do to stop it).  It's not a pleasant way to live, but I can forget I have it when it is fully in remission.  But really, there is always a lion in the room.

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    • Posted

      Hi Caryl,

      Thanks for your reply, that episode you had a month ago sounds very similar to what I'm experiencing at the moment and with the accompnying feeling of pressure as you said feels like the muscles and skin are drawing together, it's also around my temple,  and like what you described the attacks in this episode I'm having seem different from the previous episodes, the other episodes  as you put it accurately it always takes by surprise in that no matter how much you try prepare for impact you can never quite seem ready for what hits but it never brought me to my knees before that only started this time around hence why I was so worried...

      Thanks for sharing as it's put my mind a bit more at ease and I noticed you along with Glorianna have been getting results with Lyrica which while I tried before I don't think I took them long enough to have an effect as my TM went into remission shortly after starting on them... So tomorrow morning first thing it's a march to the GP for some pregablin, hopefully it works smile

      anyway thanks again Caryl for your reply it was a relief to read and I hope you're enjoying a remission period after that intense bout you had....

      Take Care

      Erick 

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    • Posted

      Thanks Erick,

      I hope you find some relief with the Lyrica.  As with all drugs it has its ups and downs.  I have not experienced any side effects except for a tired feeling that I really do not like, but I don't have many options left.  I am pretty much pain free right know except for an occasionally weak poke that lets me know that TN is there.  Good Luck, and keep in touch.  Caryl

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  • Posted

    Hi Erick,

    sorry to to hear you're going through a bad time of it. I can honestly say over the last twenty years + of having TN mine has always been intolerable each time it returned. I can't say if it's got worse or not as I recall. But either way it's still bad enough.

    Did your GP refer you to a Neurologist at all?

    Were tried on Tegretol with increases of dosage gradually and if so how long were you on this for?

    I know we are all different, but with some of us being tried on various medications we often finally succeed with a match. Sometimes you have to keep trying. For me is time around my trusted drug, Tegretol, did not work for me. I had no pain relief for two months and what mess I was given caused me bad side effects. Eventually I was given Pregablin (Lyrica) and it worked. I'm actually reducing dosages at the moment as I'm not feeling the usual breakthrough of the pain. As it's been nearly a year I'm hoping it's coming to an end and I'll be in remission once again.

    All I can say at this stage is if your still suffering please go back and see your GP.

    Let us know how you get on.

    All the best.

    Gloriana

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    • Posted

      Hi Gloriana,

      Thanks for your reply... I'm sorry to hear you've been dealing with TM for so long ! you've had a year long episode, that really is a nightmare!! the longest episode I've had was 9 months and that was tough going sometimes.....  

      I did go see a neurologist who in turn made get an MRI to se if anything looked out of place but that all came back negative so no underlying cause. Also I did try Tegretol but it had no effect, I will go back to my GP tomorrow morning and get him to start me on lyrica, I did try them before but it went into remission shortly after starting them so I maybe I didn't try them long enough to see if they had an effect... hopefully they might work... thanks for sharing it's a comfort to know I'm not completely alone with this smile

      Thanks again and I hope you're remission comes soon 

      take care

      Erick

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    • Posted

      yes, very familiar to me also. mine started in 2011 but i could ignore all but the worst attacks and carry on. I am on various meds to control it now (it became suddenly much worse in 2014) If the weather is 17 degrees or warmer the meds control it reasonably well but any colder than that and it can do anything. Sad for me as it just coming in to winter. Tn is a very weird beast indeed.

       

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    • Posted

      Hi Erick,

      Thank you. I used to have a regular pattern 9 months on, 9 months remission. Then I had a wonderful 6 yr break. I really believed that was it, but no such luck.

      When Tegretol didn't work for me this time around, and I was eventually prescribed Lyrica, I started off with 25mg twice a day, which was a nightmare as it did not relieve the pain. Basically I had to persevere with increases of 25mg twice a day every week until I reached 150mg twice a day then finally the pain subsided. Unfortunately I started getting funny side effects so I had to reduce my dosage then back up again until I was ok.

      Apparently according to my GP the small dosages are because the medication is very strong and you're not supposed to go straight onto a high dosage. The same happens when you come off them you're to gradually reduce the dosage which is what I'm doing now.

      So when you go to your GP make sure he/she gives you something else to go with your Lyrica, something that owill at least take the edge off the pain until you reach the required dosage that is satisfactory for you.

      All the best

      Gloriana

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    • Posted

      Hey Valerie,

      Thanks for your reply and sorry to hear you're suffering with TN too... 

      I was the same as you for almost six years as in the attacks were bad but I could battle through them fairly well but this time the attacks are just too severe... The weather does make a big difference for instance if it's cold and windy outside and I go for a walk it'll just trigger the nerve constantly, fortunatley it's coming into summer now in Ireland which is usually more like a mild winter smile you must be on the other side of the world if it's coming into winter ... 

      Anyway I hope your TN goes into remission and stays there, thats what I really hope and look forward to as a long period of remission really helps me forget all the life changes and suffering TN has caused, 

      as you said TN really is a very weird beast indeed 

      take care Valkyrie

      Erick

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    • Posted

      Hello erick,

      I am under the impression that Ireland gets very cold so I assume in winter you really cant go outside at all. I am currently about to head to Sydney to see if they will give me Gamma Knife treatment. Yes, we are heading into winter in Australia so it usually a midday temp of about 17 at present but where I am (Adelaide) it gets down to about 3 degrees in September but i get at least 3 months in summer with virtually no Tn. Was your MRI done with contrast material? My MRI showed nothing until i had a second one done with contrast. The surgeon also said that sometimes there is nothing to see on the MRI but when they do the op they almost always find something there anyway that just didnt show and they can give some relief. I assume you were sent there by a neurologist? If so, are you able to request an interview with an actual surgeon as they seem to have more information and experience with TN. Given your degree of pain, worth a go , anyway. Keep posting if you can and keep us up to date with your situation.

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