I am having such a horrible day week month I don't even know anymore I am just so tired of being in pain. I used to be a very reliable person and know I constantly have to cancel because I am just in too much pain to leave the house. I cry all the time which leads to more pain I feel like my husband has just about had enough of having to pick up the the slack. I was always the one who made sure everything was done and the kids had everything together I am very ocd and ran a very tight ship so watching my whole world crumpling around me is hard. I just started gabapentin 300 mg 3X a day a few days ago but so far it doesn't seem to help a whole lot I couldn't take tegretol although it helped with the pain I couldn't stand the side effects. I take percocet which dulls the pain but will be running out before I can get in refilled again on the 14th and don't know what to do I don't know if I should ask the dr for more since he knows I take 2 but he keeps putting take 1 on the bottle making me run out earlier or if I should just pray and hope that I can handle the pain and not end up in the er I just don't know what do to anymore I feel like I am losing everything I just want to give up I don't know how much more I can take sorry this is so long I just needed to vent
Vent away, that is what the group is for. No one here will judge you, we just care about you and wish we could reach out and make all well for you. You seem super bright so it seems mean to say sit your Dr down and tell him he is inflicting agonizing pain on you by giving you too little pain relief. He needs to treat you better. I hope this passes for you and you can find some peace and harmony. {{E-HUGS}}
I agree with Jackie if your pain is not controlled you need to call your doctor or go in and tell him. You gotta get that pain under control. Good luck , Min
Thank you I am just always so afraid when it comes time to get my percocet refilled I have to go in every 10 days and I always feel like I am a drug seeker so having to go in early because I am going to be out stresses me out and makes me feel even worse I am so afraid of my dr telling me no. I am just so tired of being controlled by pain and by medications my life has been turned completely upside down. And don't get me wrong my husband is wonderful but I think he is just sick and tired of his life being run buy all of this and it scares me....I know people have it so much worse than me I am just feeling sorry for myself today :( I just sometimes want to give up
(( hugs ))
Vent away, safe place here, and most of us can certainly relate.
I agree with the others that you need to find better pain relief, whether it be an increase in your meds or adding something else to the mix. If our pain is well managed we are better able to function in all aspects of our lives.
Talk to your husband and share your feelings.
From one OCD chick to another, be gentle with yourself , on the days you can’t do much make lists of all the things that need getting done. I love lists! Just making a list makes me feel better and organized.
To be honest some days I can’t do anything, and other days I can only do 2 things on my list.
One day at a time, and get thee more meds! ; )
Just vent away! You are safe and supported. I do totally agree that you should be clear with your Dr. about the pain and needing better control. I'll even encourage you to keep praying , He helps me to keep that fear and guilt in check.
Sending strong, positive energy and gentle hugs,
Sara
I am so sorry to read what you have just written. This could have been written by me, however, in reverse order, I have been taking Tegretol on and off for 8 years (occasional remission) and felt it wasn't doing much to dull the pain however, no side effects, except tiredness. Last week I went on Gabin, and had one of the worst weeks of my life, balance gone, walking from side to side, I live alone so had to get a neighbour to get me groceries, etc. So this is not much help, to you, but it seems you have to try everything is probably what I am trying to say. However, my consultant now thinks we should try a different treatment without drugs, so don't know what this could be. However, taking nothing now and drinking water to try and wash this awful chemical from my system. Best wishes. Catherine
All that sounds really horrible :( Mental illness is one thing but throw in some physical ones too and it must be really awful. I am so sick of doctors not giving patients proper pain relief (including myself as a patient - my family doctor doesn't like anything that even resembles a narcotic) ... the times I have had narcotic prescriptions is when I have been to the ER or admitted to a ward, they seem to be on to it as far as pain relief goes so never underestimate the need for proper pain relief. I realise it's easy for me to say go to the ER if you need to coming from someone in a country with free public healthcare :/ I drove myself in searing pain to the ER last week and they shot me full of IV morphine and it was such relief (apart from the itching, but there was hardly any pain so I will take itching over pain!). Please contact someone who can give you proper pain relief, it makes me so angry that US people get such crappy expensive care!
Hi hcshmily
My heart goes out to you and to all mothers who are struck down with TN. I only have to deal with myself and my 2 furry children and that sometimes is too much. I do have a partner, but I've taught him how to look after himself ;)
Remember that your doctor is there to support you and if he isn't, then it's time to find yourself a new one. They wouldn't have a job if it wasn't for us, and remember that you are paying his wages, so you have every right to ask for what you need. There is a massive difference between being a drug addict and being in pain and requiring medication to allow yourself to live with some relief and try to achieve a bit of normality again.
Who knows, maybe the universe is telling you to slow down a little too and let others help. If things don't get done, so what! Speaking with your hubby and trying to get some time together with him when you are feeling well will only serve you both well as I'm sure he's very unsure seeing you this way. My hubby certainly is, as I've always been in a high powered job and managed a lot of people and he's very blown away by the effect TN has on the body and spirit.
One day at a time and try not to be too hard on yourself - hugs x
percocet - made me feel terrible and didn't help the pain.
if Tegreto helped you - look for info about Trileptal... it's said here to be sometimes effective AS tegretol - but without the major side effects.
and about "do you ever feel like giving up"
i won't answer that. but just say- i wish i knew a simple and not painful way to end it all. hasn't found it yet. and doesn't have enought courade to do it in a painful way.
just wonder something about "crying"...it's a stupid remark.. but i admit - i haven't cried almost at all.... mostly because i'm sometimes parlazed of crying afraid cry-movement of the jaw cause severe pain.
sometimes even just swallowing movement hurts... so crying can be fatal.
hi min...
just want to understand more... when you say "You gotta get that pain under control"
do you mean that in atypical TN you come to times you have hours with NO pain at all ? even not a 2-3-4 level pain ?
i admit that even when my pain is not 6-7-8-9-10 level.. .even if it's lower.. .it can drive you mad.
i'm trying to think what the stragic should be.. or how are you doing it :
the regular daily meds keep the pain at bay - and when you DO get pain .. you take some painkiller ?
so basically you try not to be in pain at all ?
i don't know if my question in clear... (sorry..i'm so foggy from the situation)...i try to understand basically if "pain CONTROL" means most day without ANY pain (i'm not talking about classic TN in which we know many times tegretol helps tremedously).
thanks. you are all great.
Min said:
I agree with Jackie if your pain is not controlled you need to call your doctor or go in and tell him. You gotta get that pain under control. Good luck , Min
You have to get the pain to a tolerable level. One in which you can live a normal life. The pain can feed on itself and become worse and worse and worse. That's why I say you have to get the pain under control. With combinations of meds and by increasing a narcotic like I did recently with oxycodone for breakthru pain. Whatever your doctor advises.
I see a neurologist and a pain management doctor. My neuro is comfortable prescribing the meds that address the TN, but isn't comfortable prescribing meds for serious pain. He referred me to a pain management doctor. They are trained specifically to address and control pain that your primary meds don't help with. I was given hydrocodone for medium pain and oxycodone for severe pain. Before I had adequate pain control, I would be in a state of sheer panic when my pain was mounting and knew I didn't have any way to deal with it. Now that I have more options, I find that I use them much less than when I only had a few precious pain pills that I would have to sock away for the violent episodes that hit me, and I don't have the panic and fear of what I'm going to do when it hits. I'm calmer and that alone helps with the TN.
Maybe you could ask for a referral and talk to a pain specialist to see what they can help you with for breakthrough pain. After trying most of the TN drugs out there, I'm getting a lot of relief with effexor at 225mg a day. I also take clonopin occasionally because I grind my jaws together, especially when I sleep and have a lot of pain. The clonopin relaxes my jaw. I take the pain meds only occasionally as well, now that I've found effexor. The gabapentin never worked for me even at a very high dose. Others like tegretol, which worked great, I was allergic to and had to discontinue. And like everyone said, this is the place to vent! We're all here to help and be helped. So let it rip. Venting is a good thing in the right place.
Thanks everyone for the replies it made me feel better to see that I have a network of others who understand what I am going through. I am having a better day today my doctor was out of town which completely freaked me out but I was able to see another doctor and he was extremely understanding and gave me enough percocet to get through until my doctor gets back in town. I also am going to ask for a referral to pain management. Thanks again for letting me vent!!
Jackie, thanks for being so supportive and kind. My consultant finally rang me said he didn't get my first email! have so little faith in these consultants, doctors feel they just reach for the pad to write a prescription. I know there are some good ones out there, but I really want to try alternative solutions and am going to go down this road, and fight it, at least my brain is starting to whirr up again. Again, thank you Jackie.
Jackie said:
Vent away, that is what the group is for. No one here will judge you, we just care about you and wish we could reach out and make all well for you. You seem super bright so it seems mean to say sit your Dr down and tell him he is inflicting agonizing pain on you by giving you too little pain relief. He needs to treat you better. I hope this passes for you and you can find some peace and harmony. {{E-HUGS}}
I just started Gabapentin yesterday. Today has been much better pain wise. As for your medication running out, point out to your doctor that he isn't prescribing enough med to last and you are running out. At least that can be easily remedied. You are on a low dose of Gabapentin. My Dr. said maximum dose is 1800 mg daily. Talk with your Dr. regarding dosage. I too felt like giving up on yesterday. I also realized that I gotta stay around to see my grandson grow up and continue to experience all of the love that my family has to give. I know we have terrible pain but we gotta make it. Stay encouraged and I hope you have better days.
Don’t give up…there are so many of us out here going thru the same thing…it can be extremely challenging trying to get a handle in this and we all know there are some really compassionate and knowledgeable physicians and some that are not so much…hang in there and remember there are others going thru this too who feel your pain so to speak…being in the medical field I know that there are new treatments coming out soon so have your physician keep an ear to the medical grind stone…good luck and chin up…hugs
PERFECT PLACE TO VENT kiddo! We will listen, try to help and definitely support you! Call the doc - camp out in the office - bug them to death until you get some kind of relief! The hypocratic oath also applies to us, we just have to remind them of it at times... sending strength your way!
Cris
Reading all of the above. I thank God that I found this blog group of supportive friends. I was at wits end also. The compassion and kindness of everyone makes me feel great. Take care guys and wishing for the best for all of us.