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The emotional aspect of this disease

Posted , 6 users are following.

paty33
paty33

I will make this as short as possible. I'm still struggling with accepting this disease. I have very little support and frankly scared to death on how the rest of my life will be like. I have been in horrific pain for the last month and due to the lack of access to good caring medical professionals I am left pondering on the willingness I have to fight for what little I have in my life. I hate hearing the comments people feel obligated to express such as "it will be okay", "your not alone" "be positive", etc. I am a recovering drug addict (have years under my belt) so pain medication is a hard topic and I try my hardest to do without. I see nothing but a burden left to those I love. Not contemplating suicide at all but realize what this may sound like. Running away and being a burden on myself or others that may want to help is my struggle today. I don't want a life of pain, or feeling a burden to those I have left.

1 like, 14 replies

14 Replies

  • heather30609
    heather30609 paty33

    Posted

    Hello Paty33, I'm not sure that I've got anything constructive to say for you but just to say you sound as if you have a big challenge and I think I understand what you say about pain killers but if you're really careful and only take the amount you need, reducing when you have no breakthroughs, (I suppose I'm saying, take control, don't let them control you!) then hopefully you will get through this and learn to manage it.  If writing how you are feeling on here helps at all - then keep doing it - that's the point of the forum - helping one another.  Heather

  • sarah66119
    sarah66119 paty33

    Posted

    Hey hon-

    I totally relate. when I was first diagnosed my neurologist put me on fentanyl patches/ lollipops, 4 80mgs ER OxyContin, & 12 30mg IRS a day....not to mention xanax, Valium, & then adderrol bc shocker, I kept falling asleep at my desk. I was 22. No shocker, I got addicted. I went into a tailspin when friends starting noticing I was a zombie. It became an awful back and forth of me trying to explain how much pain I was in versus their concern. 

    I got off the opiates-almost 6 yrs clean-but I often feel like I might as well still be on SOMETHING that willl help bc I'm miserable and alone. I lost all my friends and now I feel like I too might as well run away. Everyone either thinks I was/am overplaying the pain (I must have been bc I'm still breathing despite being off opiates) or literally don't care anymore. I'm at my wits end too & I know how you feel. All I can say is I'm sorry and please know you're not alone. This disease is awful 

    • paty33
      paty33 sarah66119

      Posted

      Sarah

      Thank you so much for your reply. I appreciate people taking the time to give advice. This is the most comfort I've gotten since my diagnose. Sad but true.

      How have you been able to manage without pain medication? Your amazing btw. It's seems extremely hard to get people to understand TN but to understand it as an addict doing this for 6 years without pain meds? I can't even begin to comprehend it. To day the least, it's extremely admirable.

    • sarah66119
      sarah66119 paty33

      Posted

      Of course! Sorry for all the drug details but I figured you'd get the idea of how powerful the meds they put me on right out of the gate were....and I was so young! 

      I take suboxone which is technically somewhat of a pain reliever....went on it to get off opiates, tapered down to nothing & was in so much pain they put me back on a small daily dose. Which is kind of tough bc when it's REALLY bad I can't take anything without the naloxone making me sick.

      I don't know how I've done it....my quality of life has def gone down. I isolate and feel like I can't take it ALL the time but I don't know what else to do. I feel like even if I went on a small dose of something much lighter I'd just be disappointing everyone. I don't want to hide what meds I take so it's a tough one....I wish I had an answer but I just take it day by day (ha! sometimes I wish those recovery people knew what that actually means for people like us) and just try to survive best I can....

      Thanks for understanding! It's nice to talk to someone who gets it from both sides. You made me feel good about myself!!!! 

  • james63997
    james63997 paty33

    Posted

    I was having a really rough day, and your post helped me realize someone else out there at least some kind of idea as to the amount of pain I'm in, good luck and I wish you all a pain free life.

    • paty33
      paty33 james63997

      Posted

      James

      Thank you for your reply. It may have not sounded like much but you are so right. It does helps a lot to know that some people understand. It seems as if my family is completely oblivious to this disease and that ripples into so much more. My moaning and grunts when I get those short but ever so painful attacks don't even get a second thought let alone a "are you okay?" Instead, I use them as a way to justify my reasons to take the easy way out and run as far away as I can. It still feels surreal to me, its bearly been a weeks since i was diagnosed that I have yet to come to terms and accept it. So Thank you again for taking the time to share your feelings with me. I would love to hear more about your experience with this disease and/or any advice you may have for me when and if you are willing of course.

    • james63997
      james63997 paty33

      Posted

      Hi patysmile I'm actually just back from the er. Prescribed me nerve pain medication which doesn't help... and 6 Vicodin. I'm very early on in my diagnosis as are you it seems. Let me tell you YOU ARE NOT ALONE. I literally have facial nerve pain from the simplest things. Smiling....oh god shoot me before I'll smile at you lol. I'm only 18, I've had to drop out of college, none of my friends understand. I literally have like 0 quality of life. My parents try to be supportive, but they have NO clue the amount of pain I'm in...I definitely get how you are feeling, I'm so sorry you feel like your family can't truly understand. It creates sooo much anxiety when family members question the validity of pain.

      Please email Me!

      I welcome you to email me if you are ever feeling down.... I definitely know the feeling.I saw a CUTE picture the other day of a glacier the majority of which was underwater... just a little bit out. It said something like... chronic pain people see. And chronic pain people can't see...which for us is astronomical. Don't think you are alone, I've been on the verge of suicide because of this, I honestly just want to be pain free....I wish they would prescribe me opiates but they always don't want to because I'm 18 and quote unquote "opiates don't help this condition" what a load of trash. The only thing I've ever had that brought me relief was opiates. I'm so sorry you are going through thissad literally I'll even send you my number via email, that way we could even text! Talking is just so painful. Don't lose hope!

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • sarah66119
    sarah66119 paty33

    Posted

    Hi hon-

    Just wanted to let you know you're not alone. At first I had a really hard time not being mad at EVERYONE for not understanding. I remember one time quite clearly-we had extended family visiting & went to some outdoor event; the weather got funky & there was a lot of pressure change that set my TN off. my family made me feel like a crybaby for having to sit in the car....and of course the extended family prob thought I was just weird bc nobody explained to them I'd just been dxd w/ this awful disease. It's like you're in between a rock and a hard place bc if you try w/ all your might to act "ok" then they think you are! And if u do the opposite you're being a baby! I usually just run and hide.....then get flack for being so isolated. It's impossible bc THEY can't POSSIBLY understand how we feel. I try & remember that isn't their fault (lucky!) but still, it sucks-really, really sucks. I just thank goodness for places like these where we can vent/understand how hard it is. I am like you-my default is to dissapear but then the blow back from that is abnoyinf; best I've got is to send another link about TN & tell everyone how bad you feel.....I'm so sorry this is happening to you 

    • paty33
      paty33 sarah66119

      Posted

      Sarah

      Thank you so much. You just "hit the nail with a hammer" on this one. I had to stop and really think about this one....

      I am so resetful and didn't even realize it till now. "WHY ME?" WHY? I'm p****d, angry and feel so robbed. "WHAT THE HELLDID I DID TO DESERVE THIS? ". I feel like mourning my life. Apparently I'm in the denial phase...

      I will reply later today i promise

      I just quickly had to say thank you!

  • holly35803
    holly35803 paty33

    Posted

    Yeah, "be positive" is for the birds. TN is a terrible disease. It is very heard for people to understand a disease that has no visible symptoms and one that hits you with sudden, horrific pain. Since you are a recovering addict you are right to be cautious about prescription Rx. However, I think most treatment for TN involves neurological Rx such as Carbamazepine (Tegretol), Gabapentin, and the like. I hope you at some point you can GET access to good medical professionals. I had to switch neurologists when I came down with TN to find someone who really got it (I was already being treated for Epilepsy).

  • esther48415
    esther48415 paty33

    Posted

    So sorry to hear about your pain.  Everyone here on the forum knows it is real.  Some of the medications used to treat TN are not classified as pain medications. Oxycarbazapine is usually used to control siezures but for some with TN it helps with the pain; it is not addictive but withdrawl can cause siezures in those who are using it to treat siezures.  Is there any way for you to find a provider who understands this illness?   How long has it been since your diagnosis and what are the barriers to finding a different provider with more experience treating TN? Yoga and medtation help not with the initial pain but possibly help to reduce the cycle of pain as stress and anxiety can exacerbate episodes once they start.  It is a terrible cycle- pain that is unpredictable and being stressted causing more pain.    Is surgical treatment a possibilty?  Hopefully you can find support from those in this group who do understand, and it will be a small comfort during this exceedingly difficult time.  
    • paty33
      paty33 esther48415

      Posted

      Esther

      Thank you. I find myself checking for replies on my post just as important as breathing these days. It helps so much.

      I have ran into a couple of people that have this disease at such a young age (18) and i find myself feeling thankful (haven't felt thankful for anything since I was diagnosed). BUT THIS SUPPORT DOES HELP. It helps the emotional aspect of this which on return helps me feel strong enough to deal with the physical aspect.

      Anyways, I'm going on two months since the pain started and hasn't stopped. My neurologist (which I've only met once) couldn't take his eyes of his computer during our visit and just ordered more test. There is no way I would have surgery if he was to perform it. I have such bad anxiety now because frankly the shooting pain I get (on top of the burning feeling that seems to always be there) that last about a minute or so has me jumping (Like when someone scares the crap out of you when your alone or concentrating on something). I'm scared because I know its coming. The hardest thing for me is knowing that this is it for the rest of my life. If my doctor told me that it would be gone in two months i would be okay. Okay, not okay but i would find a way to get through it. There would be light at the end of the tunnel, right? I'm missing my kids games, having dinner with them, parent teacher conferences, etc. I'm just so lost..

    • esther48415
      esther48415 paty33

      Posted

      Hi Patty,

      What is the general area in which you live?  My daughter was dianosed in February and she has had wonderful medical care.  So, if you can get to helpful professionals that would be great.  Check out the support group for facial pain: http://fpa-support.org/ and look at their quarterly news letters as well.  There is a story about how this suff impacts on other family and how you can communicate and support each other.  Hospitals with specialty services also advertise in the news letters.  

      As a nurse, I am telling you sometimes you just have to speak up firmly to the doc:  " Listen, Dr. Smith, I'm in a lot of pain and I am terrified and it would really help if you could look up from your screen for a minute...."  Is the doc a neurologist or a neurosurgeon?   A neurologist does not do the surgery, so hopefully that won't be the guy.  Our surgeon was great but some are a******s- that's why they like to work with people who are under anesthesia.  That does not make someone a bad surgeon though.  I worked with gifted surgeons who are socially toxic- but some do have fantastic nurse practioners to guide patients and families and to listen to and answer questions.  

      Most importantly, the anxiety can make things worse- there was a domestic violence incident in my daughter's apartment across the hall and she had to call the police and building manager and she had hedache for 3 days.  Like I said relaxation exercises and meditation will help reduce the anxiety and stress and possibly keep the episodes shorter.  The stress not knowing how long this is going to last or what will happen makes things so much worse so it helps to try and break the cycle.  It will not address the inital pain but may keep it from ramping up due to anxiety which can play a huge role.  There are medical and surgical treatments, but everyone's response is different.  The tests are important to determine the approach to take in your individual case, so the doc is doing at least some of his job.  Remind him about the care and compassion.  

      I do not want to give you false hope.  Everyone responds differently and the quality and experience of the doctors and their knowledge matters.    My daughter had surgery the beginning of May.   She had classic symptoms and response to medication, and the compression on the nevrve was clearly visible on a high resolution MRI.     She just returned from backpacking around Europe with her boyfriend for 5 weeks and is returning to college in January.  This is not everyone's story, but it is possible.  We feel so fortunate.  Maybe you could do yoga with your kids and visualizations- I am sure they are feeling stressed and worried too..... learning healthy ways to deal with stress is important for kids... at least it is some positive time together- not exatly what you want but it's what you've got right now... you and your family are in my thoughts and prayers for healing of body and healing of spirit.  

  • sarah66119
    sarah66119 paty33

    Posted

    Hi hon-

    Just checking in. How are you? Been thinking of you and hope you're as good as good can be given everything....

    Much love,

    Sarah 

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