Suffering my first major disappointment with this disease and my inability to function; yeah I had to quit the Phd program and work, but the fact I cannot go with my child this weekend to an event that is VERY important to her, is ripping my heart out.
Hey Sky--
I log on the site to keep abreast of info and I noticed your post. I know everyone is different but I wanted to share my story-thus far- just in case it could be of help to you. I had my first attack last June and it was classic all three branches-couldn't eat, sleep, etc--so i knew right away what I had. Doctor put me on low dose tegretol and it calmed the nerve down--I have been in remission since september. They say wait three months to go off the meds... maybe the antiseizure med would work to calm the nerve down for you, too. I was only on 100 mg in the am and pm! I had few side effects from the low dose...drowsiness and dizziness for a few datys... this is a terrifying ailment-- the future so uncertain...but I just keep researching every option so i am ready if/when it returns!! Hope you are painfree soon!!
Sky,
I’m so sorry. I can understand and relate to you. Last year was just one big old tank of the rug and under I went. I had to stop my schooling for my BS, in august I had to go on to FMLA, and then in October I had to resign from my job. Most frustrating part was last July I had 12 % raise. Oh gosh did hurt to leave after that big of a raise in salary. This last November I started the long process of disability. That was another blow; especially, since my doctors and my family all told me time was up no more considering if or when to file for disability. It stinks. Last month was another hard blow as my doctors found something else other then the TN, and the fibro that is wrong with me. I’m only in my mid thirties and I feel like a very old person. I worry about keeping up with my kids, and my heart breaks that I’m no longer even about to take my youngest outside anymore. The tempature, wind, sun, rain, snow, or whatever just set me off into pain.
My only advice I have is to take it bit by bit. Don’t fret over what you are unable to do but focus on what you can do. Try to enjoy each moment that you. It’s hard to do sometimes, but it will help. Lastly just know your not alone
Sky,
When I was first diagnosed in 2002, I was 29 yrs old, my kids were 8 & 3 yrs old. I started Tegretol and it was a good 6 months of increasing the med every few weeks as I’d get relief for awhile and then the pain would breakthrough. I had to miss many an activity with my children as a result and I remember it was so difficult. Once I had pain relief for over 6 weeks we started to wean off the med.
I ended up having a lengthy remission for my bilateral TN.
8 yrs on my right and 10 yrs on my left!!!
When the right side came back, I missed 3 days of work as I started the Tegretol and managed to live normally with no pain for 2 years at 800mg Tegretol.
The left side came back and became med resistant. That is the side I struggle with. The right side remains fairly quiet.
The thing to remember with TN is this…
We all share similarities but no two cases are alike. There is always hope.
My best advice is to focus on pain control, the right med or combo of meds can bring you sustained pain relief and allow you to function normally. Many, many people do.
As Kari mentioned, focus on what you can do! Kids are resilient. Having a parent with a health condition who can’t always participate to the fullest extent all the time can be disappointing, BUT they become more compassionate and they really treasure the things you can do with them.
The hurt and guilt we feel as parents is a struggle, but we must make every effort to explain why we can’t do certain things to our children (age appropriately) and then tell them BUT we can do this…insert activity.
You’re not alone, and your inability to function is out of your control…one moment at a time, that’s all you can do, be gentle with yourself…
Huge ((( hugs ))) Mimi
One thing I do know, you will have times of happiness again, and I hope they are soon.
Thanks Jackie, I hope you are right. I read your profile, how are you doing?
Jackie said:
One thing I do know, you will have times of happiness again, and I hope they are soon.
Tacocat,
Love your handle :-)
Thank you for sharing your positive story, it just sometimes seems hard to see any successes with this disease. It helps me that we are in the same age group :-) hopefully I will be like you.
tacocat said:
Hey Sky--
I log on the site to keep abreast of info and I noticed your post. I know everyone is different but I wanted to share my story-thus far- just in case it could be of help to you. I had my first attack last June and it was classic all three branches-couldn't eat, sleep, etc--so i knew right away what I had. Doctor put me on low dose tegretol and it calmed the nerve down--I have been in remission since september. They say wait three months to go off the meds... maybe the antiseizure med would work to calm the nerve down for you, too. I was only on 100 mg in the am and pm! I had few side effects from the low dose...drowsiness and dizziness for a few datys... this is a terrifying ailment-- the future so uncertain...but I just keep researching every option so i am ready if/when it returns!! Hope you are painfree soon!!
Mimi,
Thanks for responding. It's good to know that remission can happen. How was your remission? What was it like to be pain free for that long? Did you keep meds close by in case it came back? I read your profile and you said you had the MVD, did it work? How are you today? I am sooooo afraid of medication but I suppose I don't have a choice.
Mimi said:
Sky,
When I was first diagnosed in 2002, I was 29 yrs old, my kids were 8 & 3 yrs old. I started Tegretol and it was a good 6 months of increasing the med every few weeks as I'd get relief for awhile and then the pain would breakthrough. I had to miss many an activity with my children as a result and I remember it was so difficult. Once I had pain relief for over 6 weeks we started to wean off the med.
I ended up having a lengthy remission for my bilateral TN.
8 yrs on my right and 10 yrs on my left!!!
When the right side came back, I missed 3 days of work as I started the Tegretol and managed to live normally with no pain for 2 years at 800mg Tegretol.
The left side came back and became med resistant. That is the side I struggle with. The right side remains fairly quiet.
The thing to remember with TN is this....
We all share similarities but no two cases are alike. There is always hope.
My best advice is to focus on pain control, the right med or combo of meds can bring you sustained pain relief and allow you to function normally. Many, many people do.
As Kari mentioned, focus on what you can do! Kids are resilient. Having a parent with a health condition who can't always participate to the fullest extent all the time can be disappointing, BUT they become more compassionate and they really treasure the things you can do with them.
The hurt and guilt we feel as parents is a struggle, but we must make every effort to explain why we can't do certain things to our children (age appropriately) and then tell them BUT we can do this....insert activity.
You're not alone, and your inability to function is out of your control...one moment at a time, that's all you can do, be gentle with yourself...
Huge ((( hugs ))) Mimi
Gosh Kari, I am so sorry. Thank you for finding time to lend your support. This is an amazing group of people. How are you doing today? I am sorry about your job. I was just starting my career (at 54) and now 7 years of college down the tubes with student loans and my husband just lost his job. I try not to think about too much as it scares me. I suppose next week I will start on trileptal, after my husband gets moved home (he was working in another state), and I see my neuro again.
I am sorry there is something else yet wrong with you. I am wishing for you some good news and relief from you pain.
Shirl
Kari said:
Sky,
I'm so sorry. I can understand and relate to you. Last year was just one big old tank of the rug and under I went. I had to stop my schooling for my BS, in august I had to go on to FMLA, and then in October I had to resign from my job. Most frustrating part was last July I had 12 % raise. Oh gosh did hurt to leave after that big of a raise in salary. This last November I started the long process of disability. That was another blow; especially, since my doctors and my family all told me time was up no more considering if or when to file for disability. It stinks. Last month was another hard blow as my doctors found something else other then the TN, and the fibro that is wrong with me. I'm only in my mid thirties and I feel like a very old person. I worry about keeping up with my kids, and my heart breaks that I'm no longer even about to take my youngest outside anymore. The tempature, wind, sun, rain, snow, or whatever just set me off into pain.
My only advice I have is to take it bit by bit. Don't fret over what you are unable to do but focus on what you can do. Try to enjoy each moment that you. It's hard to do sometimes, but it will help. Lastly just know your not alone
Thanks. One thing you might want to look into is student loan forgivance. I’ve been looking into. There is a difference between private and federal. But it may be something you want to look in. The sooner you start medications the closer you will be to finding some relief and some naromacy.
Skytapestry said:
Gosh Kari, I am so sorry. Thank you for finding time to lend your support. This is an amazing group of people. How are you doing today? I am sorry about your job. I was just starting my career (at 54) and now 7 years of college down the tubes with student loans and my husband just lost his job. I try not to think about too much as it scares me. I suppose next week I will start on trileptal, after my husband gets moved home (he was working in another state), and I see my neuro again.
I am sorry there is something else yet wrong with you. I am wishing for you some good news and relief from you pain.
Shirl
Kari said:Sky,
I'm so sorry. I can understand and relate to you. Last year was just one big old tank of the rug and under I went. I had to stop my schooling for my BS, in august I had to go on to FMLA, and then in October I had to resign from my job. Most frustrating part was last July I had 12 % raise. Oh gosh did hurt to leave after that big of a raise in salary. This last November I started the long process of disability. That was another blow; especially, since my doctors and my family all told me time was up no more considering if or when to file for disability. It stinks. Last month was another hard blow as my doctors found something else other then the TN, and the fibro that is wrong with me. I'm only in my mid thirties and I feel like a very old person. I worry about keeping up with my kids, and my heart breaks that I'm no longer even about to take my youngest outside anymore. The tempature, wind, sun, rain, snow, or whatever just set me off into pain.
My only advice I have is to take it bit by bit. Don't fret over what you are unable to do but focus on what you can do. Try to enjoy each moment that you. It's hard to do sometimes, but it will help. Lastly just know your not alone
Kari,
Thanks for the idea on student loans. I have Sallie Mae and they aren't very understanding. I'm pretty sure they don't have loan forgiveness, and I understand you can't file bankruptcy against them and they can garnish you paycheck and income tax return. I know I need to start the meds, but kinda worried as our medical will run out soon and my husband doesn't have a new job yet. I'm not sure if ObamaCare will pick up the prescript. It's all scary stuff. My resources are so limited right now.
Best to you always,
Shirl
I had to drop out of college with only a handful of classes left. I simply stopped moving forward in my studies and couldn't focus. So in some ways I can relate. But I don't have children.
I just turned 30 and have had this since 27.
It's really hard to find a good neurologist/medical provider for this condition. Really hard....
If you have type 1 TN you may get good relief from MVD. I have type 2 which has lower odds and relief from my MVD only lasted 8 weeks. But it was 100% relief and I'm still better off a year later, even after the pain came back, than I was before the MVD. I managed to get a new job I started 9 days after surgery and I'm still holding onto it.
Be ready to fire your doctors and move on if you aren't pushing your case forward at each visit. Many get hurt egos when you have a problem they can't answer. Others are just incompetent, or fresh out of school. If you don't pay attention they'll waste your time and money, and string you along.
Are all your loans private. Or is there some federal? Mine are mixed. Sallie maie. Seem to hire the most bitchy people ever. I would still try even if they can give you a grace period or lower the amount for now can be helpful.
That script will be picked up its one of the cheAper medications. I know the medications are scary but the longer you push it off the worse it get to controlling your pain levels. Keep your chin up. Try to remember every thing is just a stage in life and this phase will pass
Skytapestry said:
Kari,
Thanks for the idea on student loans. I have Sallie Mae and they aren't very understanding. I'm pretty sure they don't have loan forgiveness, and I understand you can't file bankruptcy against them and they can garnish you paycheck and income tax return. I know I need to start the meds, but kinda worried as our medical will run out soon and my husband doesn't have a new job yet. I'm not sure if ObamaCare will pick up the prescript. It's all scary stuff. My resources are so limited right now.
Best to you always,
Shirl
I know how disheartening it can be to get on here looking for any sign of hope - especially when your pain is at its worst. This site is full of helpful knowledgeable people who have experienced the entire gamut of this condition and my heart goes out to them. My personal experience is that I've been living with this condition for 3 years now. Mild case compared to many here - one side of face only. It would last for a few weeks and then go into remission. Even though I could still tell it was sitting on the surface just based on the way the nerve would react to mild facial triggers - like washing my face. The worst hit me at the start of the school year in the fall (I am a high school teacher) and lasted for 2 months. Any movement triggered it - talking, walking, eating, etc. The Gabapentin the neurologist prescribed did nothing for me. I didn't think I could continue working. I ended up going to my GP at the end of the 2 months because the neurologist was out of the country. The GP prescribed 200 mg Carbamazepine which gave me back my life - for now at least. The side effect was that it made me very drowsy so I started cutting down my dosage - I began taking 1/4 pills and increased as needed. I know it loses it's effectiveness over time, so I'm really diligent about taking the minimum. I've only taken half the bottle since October so that equates to 30 pills. Once in a while I need to take it, but for the most part right now it's at bay. I can live with a shock here and there. Not sure if my personal experience is helpful or not, but I thought I would chime in.
I know how hard it is when this disease reaches into your personal life. I too may not be able to take my grandchildren because of my recent relapse. I avoided this site when I was in remission because I thought it would jinx me. Silly I know, because here I am, humbled by pain again. We need to be kinder to ourselves. I had a wonderful year and I have to believe I will have another. To all those who consoled me thank you. I recently added 600 mg of neurontin to 600 mg of Tegretol, and it’s somewhat better. Keep working with a good doctor who is willing to mix it up to get you comfortable. Best wishes.
Thanks DL,
I appreciate you sharing your story, You sound like me with the meds. I've started out with the minimum and I'm slowly increasing. I ended up cutting my pills in 1/4 too. I only want to take the bare minimum. I keep waiting for that magic dosage for my pain to stop. Unlike you, I have not experienced any remissions. I will have a couple good days where the pain is lessen, and I think tomorrow it will stop, but it hasn't yet.
Thanks again, and I wish you many pain-free days
DL said:
I know how disheartening it can be to get on here looking for any sign of hope - especially when your pain is at its worst. This site is full of helpful knowledgeable people who have experienced the entire gamut of this condition and my heart goes out to them. My personal experience is that I've been living with this condition for 3 years now. Mild case compared to many here - one side of face only. It would last for a few weeks and then go into remission. Even though I could still tell it was sitting on the surface just based on the way the nerve would react to mild facial triggers - like washing my face. The worst hit me at the start of the school year in the fall (I am a high school teacher) and lasted for 2 months. Any movement triggered it - talking, walking, eating, etc. The Gabapentin the neurologist prescribed did nothing for me. I didn't think I could continue working. I ended up going to my GP at the end of the 2 months because the neurologist was out of the country. The GP prescribed 200 mg Carbamazepine which gave me back my life - for now at least. The side effect was that it made me very drowsy so I started cutting down my dosage - I began taking 1/4 pills and increased as needed. I know it loses it's effectiveness over time, so I'm really diligent about taking the minimum. I've only taken half the bottle since October so that equates to 30 pills. Once in a while I need to take it, but for the most part right now it's at bay. I can live with a shock here and there. Not sure if my personal experience is helpful or not, but I thought I would chime in.
Lou,
I am sorry you had a relapse. You are not silly in regards to staying away from this site feeling it might "jinx" you. I am getting plenty of quasi-grief for being on this site and doing so much research on TN. I am told that just getting all this information in my head make my situation worse because I have it in my head. Since I was/am prone to anxiety, I sometimes get "the eye" whenever I talk about a pain. My husband didn't know how bad it was until I started telling him every time I get a pain, where it was, what it felt like and how long it lasted.
I hope you get your pain under control soon and can enjoy your beautiful grandchildren.
Lou said:
I know how hard it is when this disease reaches into your personal life. I too may not be able to take my grandchildren because of my recent relapse. I avoided this site when I was in remission because I thought it would jinx me. Silly I know, because here I am, humbled by pain again. We need to be kinder to ourselves. I had a wonderful year and I have to believe I will have another. To all those who consoled me thank you. I recently added 600 mg of neurontin to 600 mg of Tegretol, and it's somewhat better. Keep working with a good doctor who is willing to mix it up to get you comfortable. Best wishes.
This week has been a challenge, especially when I think of how my illness has hit our finances and I really want to
go to work, but my family say's im not ready. My daughter shared with me there are a lot of people in this world who are in worse situations, and it's true I have to remember there are a lot of worst situations out there and i'm so blessed ! Please remember your not alone. I will be praying for you.