Wrapping your head around an incurable condition

How does one do that ? While my condition is not fatal it is incurable and my life quality will steadily deteriorate over time. Most possible will lead to brain stem surgery and hopefully a remission of symptoms but will ultimately return. Right now I am stuck in a fog of medications used to control severe nerve pain that is so bad when not controlled you want to beat your head on the floor until you die. It is too big to understand this is now my life.

Time. Time....forces us to come to terms with things that feel impossible. It makes even the most horrific things...normal.

When I was diagnosed with ulcerative colitis...I was in a depressed fog. I replayed worst case scenarios in my head. I raged at the $800 a month out of pocket medical expenses I would be incurring every month. Four years later...it's just life. I take my drugs. I budget for them. I dread the day when I end up with a colostomy bag. But I don't think about it...even when I'm flaring up and my body hurts and I want to do is sleep. I ignore it...I override it. I've made a new normal.

When mom got sick I cried for 2 months straight. I was mad.....now 9 months of hell later...and mostly, it's a new normal. We struggle through the days counting them down...she has 8 more days left on chemo. At one point there was 155 days of chemo.

Acceptance comes with time. Sorry I don't have actual tips or advice

I am sorry Victoria, my only advice is to never give up. Explore any and all options, don't let this dictate your life.

Time. Time....forces us to come to terms with things that feel impossible. It makes even the most horrific things...normal.

 

When I was diagnosed with ulcerative colitis...I was in a depressed fog. I replayed worst case scenarios in my head. I raged at the $800 a month out of pocket medical expenses I would be incurring every month. Four years later...it's just life. I take my drugs. I budget for them. I dread the day when I end up with a colonoscopy bag. But I don't think about it...even when I'm flaring up and my body hurts and I want to do is sleep. I ignore it...I override it. I've made a new normal.

 

When mom got sick I cried for 2 months straight. I was mad.....now 9 months of hell later...and mostly, it's a new normal. We struggle through the days counting them down...she has 8 more days left on chemo. At one point there was 155 days of chemo.

 

Acceptance comes with time. Sorry I don't have actual tips or advice

 

Yeah, it is amazing how the most horrible things become " average" every day.

 

I have no way to even describe the pain when there is pain . It has been said to be the most painful disease known to mankind . And it is so horrific I can't even describe . Two months after diagnosis I'm still trying to wrap my head around this . I have a counsellor to try and help with plans of action. Pain management plans and plans for when I can't work anymore due to medication side effects. Two months in and I'm already at the point where they are layering medications . At the most I get six weeks out of one dosage increase before the pain erupts through.

 

And getting people to understand that this is not going away has been hard . My husband says yeah yeah yeah I understand but I know he doesn't really . And my mom's favourite line is "you don't know what will happen ." Which makes me want to slap her head and say you talk to the specialist then!

I am sorry Victoria, my only advice is to never give up. Explore any and all options, don't let this dictate your life.

Thanks Brian, you're right I have a family to keep going for . I am just sad because this is going faster than I expected. The specialist expected to remission but there isnt one and as the medications increase the side effects get worse and worse.'

Oh Vic, I'm sending you major Internet hugs right now. I wish I could give you an easy answer, but time and trial and error. And to quote a favorite author, " "You need hedges ... hedges against the night." (Stephen King, Duma Key)

Meaning do what makes you happy, what gets you through, and keep searching for answers as to what works for you.

I presume you're talking about the trigem? All I can offer you is hope, because my mother's condition has stabilized and she's finally found what works. You likely will too, but yes it's a total shooting in the dark so much of the time. All I can tell you to do is not give up hope, not stop searching for what works for you. Did they find why this was all happening?

I guess the best advice I can give you is one day at a time, one foot in front of the other, finding things that bring you comfort and happiness, learning to ride with it. I know that's not much, but this may be where finding other people who have been through the same or support groups could help.

Yes, I'm throwing things out there, because I know how fricking awful that is. I went with my mom to so many doctors, so many specialists. I tried everything I could think of with her and for her, and finally we found some things that make it all bearable. Right now she's in a remission period and for that I am eternally grateful. All I can tell you is persist and if you have a family member or friend who can be there with you, who is willing to fight for your comfort and health with you, this will help tremendously. And try everything you can, it's all I can tell you to do.

So much isn't understood about this condition yet. You'll have to be your own advocate and yet I know how tiring that can be, which is why I tell you if you have someone by your side it will help. For my mother what helps is a heating pad, massage in accupressure points in her face and neck, and Neurontin, which in really bad times can be upped then dropped back down. This has helped her tremendously.

The Alzheimers though, yeah there is no fighting that. I've just accepted it and focus on making her life comfortable and happy to the best of my ability.

And that really is the only advice I can give you. Don't try to be superwoman, let yourself find and stumble and try on the path to what works for you. Reach out and vent if you like, build those hedges.

Thanks Brian, you're right I have a family to keep going for . I am just sad because this is going faster than I expected. The specialist expected to remission but there isnt one and as the medications increase the side effects get worse and worse.'

You are one of my favorite posters so I know you have endured so much already but you have persevered. Always maintain that fortitude of yours and seriously explore every option no matter how unorthodox, be it acupuncture, chiropractor, or herbal never allow yourself to feel helpless or defeated.

Oh Vic, I'm sending you major Internet hugs right now. I wish I could give you an easy answer, but time and trial and error. And to quote a favorite author, " "You need hedges ... hedges against the night." (Stephen King, Duma Key)

 

Meaning do what makes you happy, what gets you through, and keep searching for answers as to what works for you.

 

I presume you're talking about the trigem? All I can offer you is hope, because my mother's condition has stabilized and she's finally found what works. You likely will too, but yes it's a total shooting in the dark so much of the time. All I can tell you to do is not give up hope, not stop searching for what works for you. Did they find why this was all happening?

 

I guess the best advice I can give you is one day at a time, one foot in front of the other, finding things that bring you comfort and happiness, learning to ride with it. I know that's not much, but this may be where finding other people who have been through the same or support groups could help.

 

Yes, I'm throwing things out there, because I know how fricking awful that is. I went with my mom to so many doctors, so many specialists. I tried everything I could think of with her and for her, and finally we found some things that make it all bearable. Right now she's in a remission period and for that I am eternally grateful. All I can tell you is persist and if you have a family member or friend who can be there with you, who is willing to fight for your comfort and health with you, this will help tremendously. And try everything you can, it's all I can tell you to do.

 

So much isn't understood about this condition yet. You'll have to be your own advocate and yet I know how tiring that can be, which is why I tell you if you have someone by your side it will help. For my mother what helps is a heating pad, massage in accupressure points in her face and neck, and Neurontin, which in really bad times can be upped then dropped back down. This has helped her tremendously.

 

The Alzheimers though, yeah there is no fighting that. I've just accepted it and focus on making her life comfortable and happy to the best of my ability.

 

And that really is the only advice I can give you. Don't try to be superwoman, let yourself find and stumble and try on the path to what works for you. Reach out and vent if you like, build those hedges.

Right now I have to be my own advocate my husband doesn't really "do " health stuff . In his family you stick your head in the sand to anybody's suffering and hope it goes away . That is their family coping mechanism and one he still retains to this day . He will take me to the hospital though if it's outrageously painful .

So far the specialist hasn't really talked about determining what is the cause. I guess I'm going to have to bring that up myself .

My mom well , she's far away . And she tries the Pollyanna attitude of yeah you don't know what's going to happen you're not a doctor you don't know what's going on . That drives me bat crazy .

Yesterday they added Lyrica on top of the Tegretol job because the Tegretol wasn't doing its job all the way . And he said I probably maxed out on the Tegretol because of the side effects . So he would layer medication . I was having the pain in April and they started the medication but I saw the specialist in May and that's when he gave a final determination .

Already I am at 800 mg of Tregretol and 50 mg of Lyrica.

You are one of my favorite posters so I know you have endured so much already but you have persevered. Always maintain that fortitude of yours and seriously explore every option no matter how unorthodox, be it acupuncture, chiropractor, or herbal never allow yourself to feel helpless or defeated.

Awwww thank you. You have no idea what that means to me. Brought tears to my eyes. Thank you.

I just googled your condition, and I have no words other than I am sorry & I hope the meds bring you some relief

Sending cyber hugs (((( ))))

I just googled your condition, and I have no words other than I am sorry & I hope the meds bring you some relief

 

Sending cyber hugs (((( ))))

Thank you Shelly. Most of the time I do but sometimes there is breakthrough pain Like the past two weeks which is why he layered another medication . I know sometime in the future though I won't be able to work which is going to be hard .

I hope it is manageable for as long as possible!!

I am so sorry. It is not fair at all!

What kind of time frame are you looking at for the surgery?

We're here for you!!!

Hugs

I am so sorry. It is not fair at all!

 

What kind of time frame are you looking at for the surgery?

 

We're here for you!!!

 

Hugs

Whenever the medication options run out or side effects of medications can no longer be tolerated or they no longer work. It is all really individual. There is really not a ton known about the condition.

I am just really at a low point tonight.

Whenever the medication options run out or side effects of medications can no longer be tolerated or they no longer work. It is all really individual. There is really not a ton known about the condition.

 

I am just really at a low point tonight.

 

I cannot fathom what you are experiencing. Is the new med helping? When did the symptoms start? Are you in a city that offers sufficient care for your condition, or must you travel?

I cannot fathom what you are experiencing. Is the new med helping?

It is ,yes, but I feel really stoned all the time until my brain gets used to it. And I have a permenant feeling of bad brain fog. However that is MUCH better than pain.

Pray. Miracles are granted all the time. I am a firm believer in God's power.

This is just me, but brain fog wouldn't work for me. I would just go and get the surgery. Would that negate the need for meds? If so, that might be your best option, even if there are some residual side effects. At least you would be mentally sharp, wouldn't you? Or would surgery not help with that?

I agree with taking one day at a time, do what works best for you and find ways to eliminate things that drain you or do not add in a positive way. You are unique, and your combination of you-and-this is something the world has never seen before, so nothing is cast in stone, or at least not how you will experience it. Sending you good vibes and prayers, may there be relief from this and may there be light and love and good all around you. Let go of the old you, of trying to be who you used to be (none of us really are, everything changes continually in ways we can't always see), and allow a new you to be how you need to be. (((Hugs.)))

Pray. Miracles are granted all the time. I am a firm believer in God's power.

Me too! Absolutely .

This is just me, but brain fog wouldn't work for me. I would just go and get the surgery. Would that negate the need for meds? If so, that might be your best option, even if there are some residual side effects. At least you would be mentally sharp, wouldn't you? Or would surgery not help with that?

Well, the dr would have to recommend the surgery or I can't get it. MVD surgery is the best outcome for people with TN but it is pretty invasive . They screw your head sideways to a table . Drill some of your skull away behind your ear. Move part of your brain aside and use a microscope to visualize the brain stem area. They fit a piece of Teflon between the blood vessel causing the damage and the Trigeminal nerve. It works for a lot of people. They don't replace your skull but put in a titanium plate. Now this surgery works for a lot of people but it can pause further damage to the nerve which then won't respond to anything. You have a chance of facial numbness and deafness on that side. And the surgery will have to be repeated because it doesn't last forever. If it is successful though, yes ,you have no need for medication. The brain fog is caused by medication only.

I agree with taking one day at a time, do what works best for you and find ways to eliminate things that drain you or do not add in a positive way. You are unique, and your combination of you-and-this is something the world has never seen before, so nothing is cast in stone, or at least not how you will experience it. Sending you good vibes and prayers, may there be relief from this and may there be light and love and good all around you. Let go of the old you, of trying to be who you used to be (none of us really are, everything changes continually in ways we can't always see), and allow a new you to be how you need to be. (((Hugs.)))

I agree all I can do is one day at a time and my experience is unique to me.

Thank you. Hugs

Well, if the meds get to be too much, I guess you could discuss surgery him. it sounds gruesome, but all surgeries are to some extent. I'd trade facial numbness and deafness on one side for losing what makes me, me. But you know what you would prefer, and I am not facing this decision. Still, ever increasing mental fog sounds too much like dementia to me and that is my worst nightmare.

Hello Victoria66. I saw your post and just wanted to say that even though I don't know you, I support you doing whatever you need in order to find comfort. You have replied to a few of my posts with great insight that I've found helpful, so if I can just give you a bit of support with my post I am happy to return the favor. You seem to be somewhat spiritual? If so, some things are too big for us to carry. It's OK to ask for help from a Higher source. Hand it Up, then have peace knowing you are supported and not on your own.

I recently saw something on tv from a mother whose son died on 9/11 in the World Trade building. She said "it's easy to get pulled into a state of just surviving each day, but then that robs me of the goodness still in my life." I hope you find moments, even small ones, where you can find joy.

Also, maybe don't overly concern yourself about being a burden to your husband if he is your primary care-giver at home. As long as you are not mean-spirited with him, or directing anger personally at him, I think most spouses can handle it. I've been married to a wonderful man for 23 years and I'm not backing down from him. It is my honor to help him. Of course if he isn't able to do certain things you need, by all means, you can call in a home-care provider for a few hours each day as needed and most insurance covers it.

Hello Victoria66. I saw your post and just wanted to say that even though I don't know you, I support you doing whatever you need in order to find comfort. You have replied to a few of my posts with great insight that I've found helpful, so if I can just give you a bit of support with my post I am happy to return the favor. You seem to be somewhat spiritual? If so, some things are too big for us to carry. It's OK to ask for help from a Higher source. Hand it Up, then have peace knowing you are supported and not on your own.

 

I recently saw something on tv from a mother whose son died on 9/11 in the World Trade building. She said "it's easy to get pulled into a state of just surviving each day, but then that robs me of the goodness still in my life." I hope you find moments, even small ones, where you can find joy.

 

Also, maybe don't overly concern yourself about being a burden to your husband if he is your primary care-giver at home. As long as you are not mean-spirited with him, or directing anger personally at him, I think most spouses can handle it. I've been married to a wonderful man for 23 years and I'm not backing down from him. It is my honor to help him. Of course if he isn't able to do certain things you need, by all means, you can call in a home-care provider for a few hours each day as needed and most insurance covers it.

Thank you very much for an uplifting post. I get times where I am very well and able to handle everything. And then all of a suddenly " blam"! I am bedridden or hospital bound. I take 850 mg of different anti epileptic medications to control the neuralgia . Today is a great day for me. Past 2 weeks were bad. The scary and depressing part is you never know when that's going to happen. I have been taking the attitude I will do it and plan it anyway. It is all I can do.

I do pray. Yes.