I really appreciate the excellent input on this discussion. I recognized so much of what has been said in myself.
The worst part of this whole scenario is having to cancel fun times that I should have had with friends and family. Going out to dinner or to the movies, coffee with friends etc etc etc the list goes on. I try not to think too much about it because that depresses me and I don't want to go into that state of mind.
I find calming methods help - sometimes, not always. Meditation, yoga, walking, drawing or painting. I tried swimming because that is also good for the muscles and the stretching helps, but the cool water was too painful on my face, so I had to stop.
Mostly my life is guided by the weather, I cannot go out if it is windy, especially windy and cold. I cannot go out if the tempearture drops low, even if it is not windy.
My best wishes go out to all of you out there who manage day to day just to get through, you are all very brave. Don't give up !!!
I agree with Not Again (except I don't have garndkids). This summer, I vow to be more active, get out and weed etc, wear my protective gear that makes me look like a bank robber! I have not been able to meditate in over a year.I try to remember there are worse things in life. Wonder if I lived in a poor country and had this? Yikes! Wonder if I had a host of different ailments and this! I hate, hate hate that I have gained weight, but when I let up on my meds, the pain gets bad. Today I did my indoor healthrider, I'd really like to join the gym, but I'm worried because I've heard some people says a hard work out will make it worse (others not) but I'm so insecure with my fat body..I've gone in twice and back out without signing up. When I'm having pain, I find crying doesn't help, though I do it anyhow sometimes just have to have a private pity party! Most of the time, stay quiet and don't move. But Ihave to admit, I'm up and down. Sometimes I handle it ok, others not so much. Many times I feel like I'm rowing a boat with no oars.
KG keep me accountable. I too want to be more active and brave enough to wear my protective gear! Thanks for the reminder to keep doing the important, and forget about the other stuff that gets in the way. blessings~~
new sufferer-- absolutely terrified. to be honest right now the terrible anxiety,fear,worry is as bad as the pain i assume will get worse...i am so sad ...i just want to cry...I pray that i will be someone who can find relief if it gets really bad...
i actually get nauseous with worry...afraid for the future.... i need to quit reading stuff online about how bad it can get/failed procedures/etc...... i am making myself a mess.... any suggestions for someone who has struggled with anxiety before this???? I hope and pray my faith grows and I see what is important and pursue those things... I hope it is used for good in my life and I wake up to the beauty of life.... when it is painfree---to cherish this life that I had often taken for granted....
So sorry you are yet another TN sufferer. First thing you need is a diagnosis.Get thee to a neurologist! I also recommend going to the OHSU facial pain website and using their diagnostic tool. There's a link on the page that says Facial Pain Diagnostic Tool and you just click on Learn More and a questionnaire pops open. http://www.ohsu.edu/xd/health/services/brain/getting-treatment/diagnosis/facial-pain/index.cfm
It makes you really think about your pain and what the Drs will (should) be asking you. If it is true TN, I understand it responds quite well to tegretol or the newer version of it (trileptal, I think it's called), which has fewer side effects. I can truly empathize with you....there are days that you just have to cry because it just is so overwhelming. But please realize that you are not alone. I think just knowing that has helped me the most. Worrying about the future does absoutely no good...I learned the hard way w/gastritis from excess worry ....just take one day at a time. Best of luck to you and I hope you respond well to your first treatment. Please keep us posted on how you are doing :)
tacocat said:
new sufferer-- absolutely terrified. to be honest right now the terrible anxiety,fear,worry is as bad as the pain i assume will get worse...i am so sad ...i just want to cry...I pray that i will be someone who can find relief if it gets really bad...
i actually get nauseous with worry...afraid for the future.... i need to quit reading stuff online about how bad it can get/failed procedures/etc...... i am making myself a mess.... any suggestions for someone who has struggled with anxiety before this???? I hope and pray my faith grows and I see what is important and pursue those things... I hope it is used for good in my life and I wake up to the beauty of life.... when it is painfree---to cherish this life that I had often taken for granted....
Hi Taco Cat, my heart goes out to you. I have times when I allow fear and anxiety to take over, too. I hate those feelings and try to remember to take it one day (or hour) at a time. Please feel free to send me a message if you want. Youāre not alone. Weāre in this together. Praying for you. Hug!
I don't if any of you are spiritual/ religious, but I've found myself praying a lot more.. Talking to God seems to help. In the worst of the moments I pray and cry my heart out. Aside from that I try to keep a relatively normal life. I'm trying to get back into some of my hobbies. Before TN took over I was learning guitar. I also got my camera out again as I love photography and recently picked up my pencils and paintbrushes (which I haven't touched in years). My dogs also help a lot - they totally help me relax so I spend a lot of time playing with them. Having a good period - pain free for three weeks. However since the Tegretol dosage was increased, I am still struggling to adjust to the fatigue, memory loss and drowsiness. I find I am less drowsy in the mornings now. It hits after my lunchtime dose, which I guess is a natural low time anyway, but I have never been a fall-asleep-on-the-keyboard kind of person before this. (And I mean I literally fall asleep!)
If you are having bad side effects from tegretol, ask for the newer version (trileptal, I think it's called) it is supposed to have less severe side effects. Here's hoping your pain free period continues. Sounds like the meds are working for your pain.
emil2y said:
I don't if any of you are spiritual/ religious, but I've found myself praying a lot more.. Talking to God seems to help. In the worst of the moments I pray and cry my heart out. Aside from that I try to keep a relatively normal life. I'm trying to get back into some of my hobbies. Before TN took over I was learning guitar. I also got my camera out again as I love photography and recently picked up my pencils and paintbrushes (which I haven't touched in years). My dogs also help a lot - they totally help me relax so I spend a lot of time playing with them. Having a good period - pain free for three weeks. However since the Tegretol dosage was increased, I am still struggling to adjust to the fatigue, memory loss and drowsiness. I find I am less drowsy in the mornings now. It hits after my lunchtime dose, which I guess is a natural low time anyway, but I have never been a fall-asleep-on-the-keyboard kind of person before this. (And I mean I literally fall asleep!)
Well, since I am new to all this, I will be honest with you. I hope this disappears and never comes back. Every morning I wake up and ask myself, Do I feel normal? Am I making to big a deal about all this? Since I can work, do I dare ignore this and just hope it never ever happens again?
The more I work, the less I notice the small pains I get. I guess I am in the phase of trying to believe this will ever happen to me again. I know something is wrong, and I don't know if its going to get all better, or worse.
I am with you red bird!! I am new too and I am trying to get everything done I have been putting off in case it becomes really bad. I have been getting small pains all day off and on and if I have managed to forget they remind me!!
I have anxiety toubles to begin with--so I go into that panic mode a few times a day and try to push it away with prayer.
arghhhh. I don't want worry to steal my joy. I don't want to become a wreck over this.... ;-(
Are there success stories?? People who just chug along and the meds work? I guess they are not posting...right??
Wow, Tacocat, you are in good company on this site! We are a bunch of people with common complaints and anxieties that basically rule our lives. I have been through so many episodes of all kinds of emotions that on days I feel like laughing, I could turn the experiences into a comedy. On other days, a soal opera, and others, a horror movie. Get the picture? But, we all have to do what we can to hold each other up. Talking to someone about the pain, fears, drug side effects and acceptance is helpful. I hope you can do that.
tacocat said:
new sufferer-- absolutely terrified. to be honest right now the terrible anxiety,fear,worry is as bad as the pain i assume will get worseā¦i am so sad ā¦i just want to cryā¦I pray that i will be someone who can find relief if it gets really badā¦
i actually get nauseous with worryā¦afraid for the futureā¦ i need to quit reading stuff online about how bad it can get/failed procedures/etcā¦ i am making myself a messā¦ any suggestions for someone who has struggled with anxiety before this??? I hope and pray my faith grows and I see what is important and pursue those thingsā¦ I hope it is used for good in my life and I wake up to the beauty of lifeā¦ when it is painfreeāto cherish this life that I had often taken for grantedā¦
There ARE success stories. I had almost 9 pain free years after MVD. I struggled for 5 years before the surgery. I still went to work everyday..but it was HELL! I could not take any of the meds (they ALL gave me intolerable side effects and/or interfered with my ability to think) I needed to be able to think clearly in my job in the OR, so all day long I would just "grin & bear it" ...but when I got off work...look-out because I just had to let go....and my family suffered for it. That was also the only time I could take anything to reduce the pain. After the MVD, I regretted having waited so long to get it done. Unfortunatly for me, the pain came back and repeat MVD only gave me 9 months pain free.
Now I just go day by day. I was forced into early retirement by disability, as I was unable to do my job and take any meds. They all mess with my brain and my ability to think...or they alter my personality. Mostly I am taking just pain meds and living day to day. Some days are better than others. But everyone is different ...you have to find what works for you.
Best of luck and try not to worry. The one thing I have learned through all this is that it just doesn't do any good (worry)!
tacocat said:
I am with you red bird!! I am new too and I am trying to get everything done I have been putting off in case it becomes really bad. I have been getting small pains all day off and on and if I have managed to forget they remind me!!
I have anxiety toubles to begin with--so I go into that panic mode a few times a day and try to push it away with prayer.
arghhhh. I don't want worry to steal my joy. I don't want to become a wreck over this.... ;-(
Are there success stories?? People who just chug along and the meds work? I guess they are not posting...right??
new sufferer-- absolutely terrified. to be honest right now the terrible anxiety,fear,worry is as bad as the pain i assume will get worseā¦i am so sad ā¦i just want to cryā¦I pray that i will be someone who can find relief if it gets really badā¦
i actually get nauseous with worryā¦afraid for the futureā¦ i need to quit reading stuff online about how bad it can get/failed procedures/etcā¦ i am making myself a messā¦ any suggestions for someone who has struggled with anxiety before this??? I hope and pray my faith grows and I see what is important and pursue those thingsā¦ I hope it is used for good in my life and I wake up to the beauty of lifeā¦ when it is painfreeāto cherish this life that I had often taken for grantedā¦
My faith really helps me get through, too... lots of praying on the especially hard days. I'm a photographer and also find comfort by strumming my guitar and cudding my dogs. We have a lot in common! :)
Hope this is a good day for you,
Vicki
emil2y said:
I don't if any of you are spiritual/ religious, but I've found myself praying a lot more.. Talking to God seems to help. In the worst of the moments I pray and cry my heart out. Aside from that I try to keep a relatively normal life. I'm trying to get back into some of my hobbies. Before TN took over I was learning guitar. I also got my camera out again as I love photography and recently picked up my pencils and paintbrushes (which I haven't touched in years). My dogs also help a lot - they totally help me relax so I spend a lot of time playing with them. Having a good period - pain free for three weeks. However since the Tegretol dosage was increased, I am still struggling to adjust to the fatigue, memory loss and drowsiness. I find I am less drowsy in the mornings now. It hits after my lunchtime dose, which I guess is a natural low time anyway, but I have never been a fall-asleep-on-the-keyboard kind of person before this. (And I mean I literally fall asleep!)
Oh yeah, I know what you mean about falling asleep after noon. It happens to me too. My ear is affected with certain sounds, and playing the guitar, which I had played for years, is difficult due to the muscle strain on my left arm and neck causing pain to my trigeminal nerve. Now music is a complicated labrynith of discovery for me. So, now I play a 12 tone thumb piano. The sound is like a harp and very pleasurable and relaxing to play. Highly recommend one.
Well, I just began my 14th year with TN. Ironically I met a doctor of hyperbaric medicine who is 60 who also has TN, but he only has episodes 2-3 times per year. I'm always intrigued to learn that some doctors use Hyperbaric treatments in a chamber as a treatment for Trigeminal Neuralgia. I am doing much better now that I've been able to get away from opiates as the basic relief of pain. After I had the MVD (2006)...I was in the worst pain I'd ever felt due to what another dr. dx'd as Anesthesia Doloroso. Yep, made it worse there for a while...several years. I think the surgery exacerbated the pain in some instances. It's just nice having all of my wits about me. I've been off opiates since Sept. 2010. I'm scuba diving again. Traveling extensively around the world. I am finally not in so much pain and/or my medications are working and my attitude has changed. I'm not letting fear rule me. Fear of pain is almost as bad as the pain. It is usually triggered by weather, talking, chewing, but mostly seems like talking is the trigger, but cold or wind can also be triggers.n I had an MVD in 2007 and a GK in 2006. I am beginning to feel I have less pain than I did before. It helped me also when I resigned to the fact that I will likely have this pain for the rest of my life. Now it seems I may have taken away some of its power too. I am doing much better. Looking forward to hearing from others.
I started this discussion because I recognized after pain wasnāt a focus (due to recent mvd) many emotions/ issues came to the surfaceā¦ During this past year with horrid levels of pain, confined to my home I was in survival mode. Of course there were emotional issues, some were dealt with, but most were buried. The pain and getting through each moment took precedence.
I definitely have āissuesā as a result of my experience, and am only just beginning to scratch the surface in acknowledging everything. Itās healthy, and absolutely normal that we all have emotional side effects of Living with TN.
I have found it helpful to journal, I meditate and I try to communicate with my husband, children and close friends about where Iām at, how I feel emotionally. This helps me.
I also have faith as well as a strong belief and trust in the Universe and our individual journeys, I try to trust that everything does really happen for a reason, personal growth etc I try to look for opportunities to be grateful. Amazingly you can always, always find something to be thankful for. Somehow this also helps me.
I think what has helped me most of all was a strong determination that this was just not acceptable, I refused to believe this was/is my life , I held on to HOPE, even in my darkest hours. I am not out of the woods, Iām a very realistic person, my TN pain can return as it has for so many others, I also have bilateral TN so chances are goodā¦I just choose, I guess to try and think positively. Not always easy. But I try.
Iāve had my cries, feelings of desperation, resignation, fear of the pain traumatizes youā¦
I donāt know what the future holds, none of us do. So Iām trying very hard to focus on the moments, not the hours, days, weeks, months, years, just the moments.
Having this community of fellow TNers, has been an enormous comfort and support and has helped me feel less alone during a very lonely time. Iām very grateful.
I hear ya! There is definitely a learning curve for living with TN and MS, especially for those around us. I am so blessed that my family, my friends, even my neighbors are great. They treat me with respect, they understand when I canāt make it to an event (even if I canāt). I am by no means saying that it has been a breeze trying to navigate these diseases, but I realizes early on that this was something I never prepared for, EVER! I didnāt think that it was even possible to live with this much pain. I had never even heard of anyone living with pain that didnāt end their life like cancer.
I went from being an active 36 year old mother of one, a successful software architect and consultant to living in a quiet, cold dark room. I have not had one second without pain since August 2005. My ānormalā pain is a 5, and that is one heavy pain meds, 2 Gamma Knifeās, and Iām on my second PNS implant. Loud noises, bright lights and warm temperatures cripple me. We all know what the TN does to us, but I also have MS which has taken away my ability to regulate my temp. Simply standing and walking makes my temperature soar and that takes away any ability to walk, speak, thinkā¦so I have turned my house into a cave with air conditioning in the winter, ceiling fans, freezers full of ice packs and every tech gadget, game and big screen TVs I can afford.
If I want to go out we have a plan in place and ready to go which contains coolers being filled with all kinds of ice packs, dark glasses, pony tails and specific times durations based on how Iām feling. It totally sucks to live with so much structure, but it works. Its better than the alternative and everyone around me would rather work with me on my ācapabilitiesā than not see me at all. We also have them come here so that I can control the temp., volume, you name it. They all come with sweatshirts and jackets and beer. Now those are good friends.
Best lesson Iāve learned, be patient with your family and friends. Everyone needs time to adjust and they donāt feel what we feel, and for goodness sake, be patient with yourself! We canāt help it!
Adjusting has been really difficult for me because I look fyn but am dying inside.Iām an emotional wreck the smallest thing can set me off crying.I have become like a ticking tym bomb,jus waiting to arupt.I donāt spend time with friends any more because they dnt understand.I can manage my immediate family and partner but anybody else,no thanks.going out I dnt do anymore because I neva know how Iām going 2 embarass myslf this tym.I dnt want to work anymore because they think Iām making everything up,n sumtyms really I canāt get up.so it is really hard 4 me,n those around me,especially my 6yr old son because mommy has become so irritable,shouts a lot n jus cries.nothing makes me happy.my life has just become so miserable.