I have lost a sense of who I am

So here I am a positive smiley Chica who had the gift of gab … And one day about two months ago I was in severe pain … This is the short version… I was diagnosed with GPN … Since then I don’t smile as much I barely talk I go to work and come home I don’t go out I stopped talking to my friends because I felt like I was always complaining to them … And that became frustrating to me and probably annoying to them I’m taking med right I do 300 mg morning and night and it’s still not working this medicine has also effected my speech and has made me foggy and tired … Even working out has become a issue my face gets real tight and I’ll get sharp pains … Since I was diagnosed I probably had two good days … Will things get better …??? What are some of you doing for the pain or what medicine are you taking …?? I am so devastated

Kay,

I've had it for about 6 months. My experience is that it does not get better. Most of the research I've done indicates that it may or may not get better depending on the individual and severity of the case. I'm no expert , just highly motivated to get better. I was finally diagnosed about 10 days ago. Just started taking tegretol which has helped a little bit. Do you have a good doctor/neuro? Are you considering surgery?

Eddie

Hey Eddie I thought I replied but don’t see it … I do have a good neuro and on the same med as you what is your dose? I current am taking 300mg twice a day … How has this affected your life ?? I am trying meds first my issue is they didn’t see anything on my MRI or cat scan so I don’t even know if they can I haven’t thought about it yet is there ways to privately message people??

I'll PM you now.

Ok

Can you pm if your not on a desk top right now

I just sent you a PM , you should have it on your inbox - I'll PM my e-mail as well.

We’re do you find your inbox on here I’m lost

Hi Kay,

Quite often when folk are first diagnosed, you're pretty much in shock and trying to come to terms with what is going on, why you, and how much your life can change over night. The key seems to be to understand you're going to go through a grieving process and this is all normal. In this community, you are normal. Eddie also is currently going through this early diagnosis piece. The key things to understand are what your triggers are and to work out which medications work best for you and what the options are for treatment. With medications, its all dependent on you. What you experience with one medication, may not be the same as the next person. So for the best use of this community, put your questions out there and you'll find a number of different responses that then provide you with the information to go and discuss with your care providers. There is no right or wrong answer, just options. Similarly for the surgical paths as well.

With MRI's its not unusual for them not to find something. If you search on the community site for MRI's there's heaps of discussions on that very topic. I've had an MRI come back negative according to the radiology specialist, only for the neuro to look at it and say "there it is" clear as day.

One of the key things that happens once you have a condition, is notice all the things you lose immediately. But eventually you learn to live around your condition and with treatment options, eventually you'll get there. You'll find ways to chat, without using your voice and rediscover there's more to you than just this condition.

There's a wealth of information in the different discussion threads, so have a look and if you have questions ask them - you can add to the threads or start your own.

Hope this helps some,

All the best,

Smiley.

Hi Kay

I would agree with everything Smiley has just said - the first few months, even couple of years are the worst. You're trying to come to terms with unexplained pain & then the grief for what you've lost sets in. This was the hardest for me, like you I just felt like I'd lost myself. I used to say to new people I'd met "I wish you'd know me before I go ill, I wasn't always miserable and negative like this". Slowly though, you will learn to live within your limits - learn to live with a certain amount of pain (the meds you're on will help to control the rest of it hopefully), learn to live with the medication side-effects and learn to live with the "new" you.....even if right now you don't want to.

What you said about "does it get better" - of course that's what everyone wants to know when they first get this, because normally when you get sick, there's a cure and you get better right? Well, with GPN and with what you and others will read on the internet, it's a more difficult condition to just "get better" from. But I disagree with people who state that it gets worse. That's not the case for everyone - lots of people get the right medication for them (though it may take a while to try various ones for you) that can curb the main pain and lots of people learn to live with a degree of pain with this. Some end up having MVDs and getting rid of the pain altogether - bear in mind with these people, they're not the ones who hang around websites, so we rarely hear their success stories.

As for MRIs - don't be disheartened too much if your MRI came up as "clear". In my experience, the success of an MRI showing up what's going on depends on the MRI machine and the type of MRI being ordered by your consultant. I had 15 MRIs in 4 different hospitals over 3.5 years and every single one came up as"clear". It was beyond frustrating and I became very depressed not "knowing" what was wrong with me, even though I knew in my heart it was GPN. It took me doing some research online and finding a neurosurgeon with experience of GPN who then ordered a "fiesta series" MRI......in 1 afternoon this MRI an offending artery pressing on the GPN nerve became clear. 8 months later I had my MVD (3 weeks ago!) and I am in recovery awaiting the time I can reduce my medication to see if the surgery worked.

What I have found incredibly useful over the last 12 months is seeing a therapist. It took me a long time to figure out I needed to speak to someone to voice all these things related to GPN - the 'WHY ME?', the 'I wish I was who I used to be', sometimes the 'I wish I was dead' plus lots more!!

Just remember that the early stages are very hard but if you can try to see the big picture, that it might take a while to find the right person to help you but in the mean time YOU ARE NOT ALONE. Use this website and others to find other people suffering the same as you, ask questions about your symptoms - you'll be surprised how much better you'll feel when someone replies to say they also have the same symptoms as you. Contact people and don't be afraid to MOAN!!!!!!!!! This is a horrible condition, but it's worse when you try to tackle it alone.

Big hugs

xxxx

Thank you granadam for your support and info everything you said was right on the money!!! I remeber one day in February shortly after I was told I had GPN my ear was hurting so bad I went to my doctors to Make sure I had no ear infection and of course I didnt. So I have been taking tetregrol I still have pain and battles of discomfort but I here that’s normal that it usually does take all the pain away just makes it easier to deal with. I have a 12 year old son and am a single mom I moved back home and my dad said to me I should stop taking the medicine because I’m moody very tired and my brain is foggy but also because he thinks it’s not working since I still be in pain and not feeling well ??? Does anyone have any stories about how your family responded to what you deal with??
I told him that yes I still have pain but I can work and kind of function that means I work and come home but who knows how I would be off the med.!! I am going to try to wean myself off and just see how I do I know the tiredness is effecting me I’m napping on my lunch break then by 430 I slept till 9 got up for a hour and went back to sleep … Which is hard for my son but some days I can’t keep my eyes open. Did you experience this side effect ? Does your body get use to the medicine eventually?
I really wanna thank you all for talking to me… It’s a great feeling to know that I’m not crazy and other people experience the same stuff btw does anyone know of any natural remedies that may work or even help??

My pain was only helped for a short time with Tegretol. I did get used to it and the side effects seemed to go away.

I lived your misery, too. I cried. Nobody really understood. I suffered through one meal a day, that was all I could stand. I realized as the pain continued, I had to do more than the meds, and for me, neurosurgery worked. It doesn’t always work, and the recovery was rough.

You’re not alone, and here you’re in the company of people who have traveled the same road.

I have had 2 great years without that horrible pain, and it is my sincere hope your path takes you to a pain free, happy life.

Take care and never give up! You have much to live for, and loved ones who care…
Vic

I am so sorry this happened to you. I have also had these thought. My journey started at 26 and I am now 52. I have multiple neurological things going on and really have never gotten a clear diagnosis. I started with daily vertigo and left my job in the pharmaceutical industry as I realized I would not be able to keep up the pace and do the flying I would need to. So I scaled back and taught at a small university but eventually had to give that up also. SO after all the years of school I ended up with no career and not much money for all of my hard work and sacrifice in my young years. That I accepted after a few years.

I think the harder part for me was the friends and family thing. My parents and sister were wonderful. Aunts, uncles also pretty good, I did have a great uncle that was very harsh with me and tried to embarrass me all the time. He is lucky he was an old man or I would have ripped him to shreds with my words and made him look like a fool because he deserved it. Instead I hardened my heart to him and left the room. Sometimes you have no choice when you are dependent on someone you have to put up with a little crap. But do not think you deserve it because you don't. This is such a rare problem and often people just do not understand. If they are willing show them. Print something out for them. Would your dad look at something you printed out for him?

If a person is making you feel bad and you are not dependent on them I recommend shedding them as fast as possible and don't look back.. Be cordial, but just stop returning their phone calls.You need all of your strength to care for yourself and your son right now. If they don't want to understand don't bother with them. The good and the bad of this thing is I found out a lot about "friends". I was always the listening ear, the one to call with a problem so I think I attracted lots of people that took without giving. My medical problems changed that. I repel those people now and that is a good thing. It is a hard lesson but I really appreciate the good in people that I did not before. In time you will have all kinds of revelations and while no one would ever want chronic pain, you will become a warrior and a survivor and you will be amazed at your own strength.

All the best

BTW I cannot take tegretal as I am allergic. I am taking gabapentin 300 mg twice a day. The neuro just added on 50 mg of nortriptylline and that has helped with my pain,. The gaba pentin seems to be what makes me tired. I have been able to reduce the gabapentin some days to just 300 mg and on those days I dont sleep as much. I am going to ask him next time to up the nortriptylline as I tolerate that better than the gabapentin. I used to take topomax and it did not make me sleepy but as I got older it had more of an effect on my memory. It was my favorite drug to treat pain though, just started making me too stupid! Maybe you could ask your doc to add on another drug? The combination of drugs works much better for me than a single drug.

Hi Kay. I've had TN for about 17 years, with pain for a few months and then remissions for a year or more. My GPN was originally confined to my throat and wasn't much of a problem for the first 4 years, then it moved to the lower jaw and ear and became more painful. During the first real "episode" I was hopping around clutching my throat and sticking a finger in my ear for a few days, significant pain for a month and then remission for around 3 months. Then it was back again, but with only a week or two of really bad pain. So there have been ups and downs and I haven't taken medication so far.

Fortunately, I was laid off and am now effectively retired, so I don't have to deal with work issues. For several weeks I've avoided my lunch friends because talking is painful and I don't particularly want to tell them about the neuralgia. My girlfriend is upset on the days she sees me in pain but at least she is sympathetic and accepts that I'm not exaggerating.

Despite the fact that GPN often seems to get worse over time, I think it's vital to maintain a positive attitude. I take Vitamin B12 supplements. I don't know if they help, but at least I feel like I am doing something.

Anyway, good luck with this.

Hang in there, don't wean off meds because your dad makes fun of you, you have to take care of you. My Dad called me his "drug addicted daughter" and made fun of me when I answered the phone and could hardly talk because of the throat pain. I am so sorry you have to go through that from a family member too. But after 3 years he is much more understanding. I have educated him to the reality of this disorder. There are some great links on this site if you search around. The hardest part is letting go of who you once were and your old self concept - redefining what brings you joy and accepting your limitations - and feeling invalidated by those around you just because they can not "see" your disability. All the best to you, you are not alone.

I started on Gabapentin on March 16. 300 mg, then 2x day next week, then 3x day since. The last 2 days I finally started feeling like the head fog was really lifting. Pain isn't under total control, but much, much more manageable. The side effects of gabapentin were almost intolerable. It's hard to find resolve to keep moving when you are tired, foggy and in pain. Do try to find some little routines that make you happy. I read part of a dorky joke book every night before bed for awhile. Hope things are improving for you!