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"Monster" Attacks

Posted , 9 users are following.

greg66242
greg66242

If you have had "monster attacks", or are in the process of having them, could you explain yours? Example: I am having sharp bug crawing shocks on my lips(horizontal and vertical), skull tightens up like it is in a vice, and face feels like it is on fire with somebody putting it out with an ice pick. All of this is coming through a face that is numb from a MVD and a bi-lateral Radiation procedure. Again, both have failed.

God Bless,

Greg 

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  • susan33651
    susan33651 greg66242

    Posted

    I get intense stabbing in the left eye with periods of throbbing between bouts of stabbing, the rest of the left side of my face and head join in and then a spikey footed spider crawls over my cheek, oh and my teeth feel as though they are on fire! I get stabs and shocks too. Miserable B'stard of a disease.

    I suspect we each suffer horribly in unique and interesting ways!!

    • greg66242
      greg66242 susan33651

      Posted

      Hello to Susan and all that repsonded...a Big Thank You!,

       It seems we all basically have the same symptoms. Anyway, I had the opportunity to be part of a video conference with our "monster" support group here in Tucson, Az on Saturday. The speaker was Dr. Casey, the co-author of the book "Striking Back".

      I asked him the order in which to have procedures done, remember, each case is different...what is done for one, may not be for the other, depending upon their situation. Also, I have it bi-laterally. So, I asked about my situation, and maybe others. I had Stereotactic Radio surgery done first. The goal is the same as in the three through the cheek surgeries-partially injure the nerve just enough to disable those butt head pain signals w/o causing many side effects. Ha for me...sorry! He made a note that this is not the same as Gamma Knife", where they aim a beam of radiation that covers (volume) vessels in the area targeted. Cutting off nerve tissue's blood supply and causes parts of the tissue to scar and die.

      Then I had an MVD done. Well, now the nerve was "p*ssed" off from the radiation, so no matter what was done, as in my case, where the vessel was wrapped around the nerve, he put a teflon pad to separate the two. Did not work in my case.

      Bottom line for some, depending on diagnoses, he would have been prone to do a MVD first on me, then follow up with radiation if needed.

      I hope this helps, and something out there will gives us some hope.

      God Bless,

      Greg

    • metsfanLisa
      metsfanLisa greg66242

      Posted

      I, too, had the MVD surgery....without success.  It's back with a vengeance.  I was fortunate enough to get an appointment with Dr. Fukushima out of Duke Hospital now.  He does not think the 'American' doctors do it right!  Thankfully I'm scheduling another surgery in November, even though my previous surgery was in March.  I'll let you know how it goes!  Fingers crossed!

    • Stupid1
      Stupid1 metsfanLisa

      Posted

      Metsfanlisa,

      Where is the Mayo clinic?

      God bless

      us and keep us and give us peace

    • greg66242
      greg66242 metsfanLisa

      Posted

      Hello MetsfanLisa,

      My MVD was a FLOP. It is now coming back with vengence. However, right after surgery, the side effects came on. You probably know the list. Now, some 17 months later, MORE numbness is coming along with the existing numbness. Have you had an experience like this?

      The Doctors' are contributing this to having a Stereotactic Radiation treatment (bi-lateral of course) some 24 months out. Also, they said you knew ALL the risks involved. Ok, but this far out from procedures?  They shrugged their shoulders and said nothing.

      Any thoughts or experiencing this yourself, or any neuralgians that have had any procedures at all.

      I pray this one does the trick. Where are you having it done?

      God Bless,

      Greg

  • karen36710
    karen36710 greg66242

    Posted

    I can identify with the "vice" like feeling.  My last medication was Friday am...it is Sunday night now.  So far I am no worse without the meds...actually better because no side effects.  I have pain and it is exhausting....but so are the meds.

    • Stupid1
      Stupid1 karen36710

      Posted

      Karen36710,

      I take 900mg gabby and 150 oxcar tablets @ bedtime, these pill r good for my lifetime of insomnia bcause they put me 2 sleep. I found out that these pills are for seizures at least that's what my PCP told me.

      Our condition r being compared to seizures, anyone know y?

      God bless,

      us and keep us and give us peace

  • angela04649
    angela04649 greg66242

    Posted

    Hello,

    I am Angela and I have lived with TN and atypical face pain since 2010. This period of pain has last since 8 month. A few days ago I experienced a real "monster attack". I have the TN on the right side of my face. It started with a burning, tingling, spreading  crawl from my lower gum to my nose to my cheek, eye and top of my head. It was a firery pain and all I could do is hold my head,close my eyes and cry for help. I hope you understand my description because I am German living in Texas. It was over in a minute and my husband and I raced to the ER. As soon as I mentioned TN I was told they couldn't help me. I was offered a pain shot. This condition is so frustrating.

    Thank you for listening,

    Angela

     

    • karen36710
      karen36710 angela04649

      Posted

      I share your frustration.  I was diagnosed 3 months ago....I feel like I have lost my life, can not plan anything.  First it was the pain, then and continuing it is the side effects to the medications.  I try to keep going ...to be active, walk, golf and knitting...but the side effects even on the lowest doses impair me.  We normally winter in Florida, but we are debating on the risks of going south this year....what if I get worse...tomorrow is unknown with this disease let alone trying to guess what will happen over the next 6 months.  
    • Baudwalker
      Baudwalker karen36710

      Posted

      Hi Karen

      You have the magic alternative at your finger tips .... GOLF!

      Go out and get so frustrated with that little white ball you forget all of your other issues.

      Used to play very often myself, at one time I played competition golf 4 times a week and practiced at a night range on the other days. What a way to go!

      Handicap back then was at 5 but I doubt I could play to a 36 handicap now. I did all of my own clubs changing shafts when upgrading and general grip changes and other maintenence too.

      I doubt I could even putt very well now as the left eye won't close and the wind makes it water like a fountain all of the time.

      I hope this or your other interests help to make ENJOYMENT the center of attention and NOT the monster!.

      Just be sure to sit the monster right on top of or just behind the ball and thrash the living daylights out of it. Not that doing that will help your golf game but I am sure it will help your outlook!!!!! cry

    • angela04649
      angela04649 karen36710

      Posted

      Karen,

      I feel the same. I have been on multiple meds and had severe side effects. For instance, Trileptal made me painfree but also very low sodium levels, so I can't take it anymore. The list is endless! We also don't plan much because of the TN. I can't eat, can't talk, can't laugh...but I also try to go for walks with my kids or swim. I am in the process of making an appointment with a TN specialist in Houston hoping to get help.

      Angela

       

    • karen36710
      karen36710 angela04649

      Posted

      My family doctor has not even mentioned sodium levels or blood tests.  For the past 3 months we have not been able to plan anything.  Tonight we are going out for dinner with good friends, another couple.  While I have a lot of support from friends this girl friend is the only one who researched TN and really understands what I am going through.  Is the "can't eat, talk etc" from the drugs or the TN?  I started off with a "sore throat"....but then this got mixed in with the sores in mouth from the drugs...very hard to tell the difference.  I truly think I was over medicated at the beginning and that has confused things every since...  Check out Dr. Kaufmann in Winnipeg Manitoba...read his website on TN...it is excellent 

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