sara-pezzini Posted October 26, 2016 Author Share Posted October 26, 2016 Thank you heart! That makes me feel so good! Link to comment
Hermes Posted October 26, 2016 Share Posted October 26, 2016 Wishing you well, Sara. Understand you are feeling apprehensive, but as Heart said: think positive, and look after yourself. Good luck! Link to comment
sara-pezzini Posted October 26, 2016 Author Share Posted October 26, 2016 I try to do my best! Link to comment
Wolfshook Posted October 26, 2016 Share Posted October 26, 2016 Keep on fighting. Surgery too is a form of figh. It seems like you've been through a lot,and I believe you will go through this with no problem. Link to comment
sara-pezzini Posted October 26, 2016 Author Share Posted October 26, 2016 That's sweet! Yes I've been through a lot these past 2.5 years from when the trigeminal neuralgia first started, till now.....sometimes i think it's too much but i still go on.....with all my hope set on this surgery... Link to comment
Capricorn3 Posted October 27, 2016 Share Posted October 27, 2016 I don't think there's a person on this planet who wouldn't be scared and apprehensive, as it is serious surgery. So, your feelings are totally normal. That said, I have great faith that it will go well and you will be in good hands! You're in my thoughts and prayers. ~Hugs~ Link to comment
sara-pezzini Posted October 27, 2016 Author Share Posted October 27, 2016 Aww thank you! Yes it's major surgery and sometimes I'm okay but then suddenly i get that huge feeling of anxiety and it builds and builds and i really need someone to talk to and that happened yesterday and there was no one there so i posted here and it helped me keep it together....for now! Link to comment
Warboy Posted November 1, 2016 Share Posted November 1, 2016 Hi Sara. I too struggle with TN. I am close to losing my job because of it. I have had it for 7 years and It really does stop me from leading a normal life. I am hoping to have Surgery in the near future. Just stay positive and think of how much of an impact this will have. I am pushing my doc for surgery. I want It so bad. For me the the risks are worth it. I would not wish this on anyone. I could also do with someone to talk to as I do not know anybody else with this and I think It would be good to chat. John Link to comment
Seraphim Posted November 1, 2016 Share Posted November 1, 2016 Hi Sara. I too struggle with TN. I am close to losing my job because of it. I have had it for 7 years and It really does stop me from leading a normal life. I am hoping to have Surgery in the near future. Just stay positive and think of how much of an impact this will have. I am pushing my doc for surgery. I want It so bad. For me the the risks are worth it. I would not wish this on anyone. I could also do with someone to talk to as I do not know anybody else with this and I think It would be good to chat. John Wow ,a third person! Hi. Me too. Link to comment
sara-pezzini Posted November 1, 2016 Author Share Posted November 1, 2016 Hi Sara. I too struggle with TN. I am close to losing my job because of it. I have had it for 7 years and It really does stop me from leading a normal life. I am hoping to have Surgery in the near future. Just stay positive and think of how much of an impact this will have. I am pushing my doc for surgery. I want It so bad. For me the the risks are worth it. I would not wish this on anyone. I could also do with someone to talk to as I do not know anybody else with this and I think It would be good to chat. John Hi John, Wow we found a third person on here with TN! It is pure hell, plain and simple! I hope you get the surgery as well! I didn't even have to push my doctor, he believes in doing what the patient wants and he stands behind me 100% and that's a nice feeling. He is confident and then so am i... Just still very very scared and emotional, been crying a lot this past week but i also think now finally things are coming out. I bottled it up for 18 months and now it's coming out.... Wow 7 years! I can't even imagine! I have it now for 2.5 years.....the first year undiagnosed and untreated as i thought it was a tooth ache but then last year they diagnosed me, found the tumor and gave me meds.... Do you take meds and do they still work? What do you take? Link to comment
Warboy Posted November 1, 2016 Share Posted November 1, 2016 Hi both of you! It is. I find myself curled up in a ball quite a lot because of the pain. And It is so frustrating not being able to enjoy life. It took 3years to diagnose. It seems to be a very slow process for me. 4 different Neurologists. Physios. Headache specialists. I seem to be constantly waiting to be told again what I already know. I last saw my Neurologist on 2 weeks ago and told them to find a sense of urgency. I keep a headache diary and the past few months It has been at its worst. Having another Scan and Going to pain clinics soon. I honestly don't blame you for feeling scared. Is it the surgery itself? Or the risks involed etc? You are definitely going to go for it though? You will be so happy when it is over. They suspected my teeth for a long long time. I take Carbamezapine and Topamax. I don't think they are working to be honest. Although sometimes the pain feels managable then it comes back with a vengeance. What meds do you take? What is the situation with the tumor? Link to comment
Seraphim Posted November 1, 2016 Share Posted November 1, 2016 I take Carbamezapine and Lyrica. 800 mg of carbamazepine and 50 mg of Lyrica. I started having bouts in 2009 but didn't know what they were . This year it became unbearable and I went on medication But yes your life becomes very limited Link to comment
Warboy Posted November 1, 2016 Share Posted November 1, 2016 I take 800mg too. Are you hoping for surgery or is the medication keeping it under control? Link to comment
Seraphim Posted November 1, 2016 Share Posted November 1, 2016 I am under control for the most part. I hope for surgery one day though because taking this medication will be the destruction of our teeth and bones and almost everything else . Link to comment
Seraphim Posted November 1, 2016 Share Posted November 1, 2016 Not to mention the brain fog . Link to comment
Warboy Posted November 1, 2016 Share Posted November 1, 2016 Glad to hear it. I am hoping for big progression by July. Whether it be an appt for surgery or actual surgery or just medication that works. I am in the Royal Navy and I am facing Medical discharge. So I need something positive soon Link to comment
Warboy Posted November 1, 2016 Share Posted November 1, 2016 Do you find you could sleep for days on end? Link to comment
sara-pezzini Posted November 1, 2016 Author Share Posted November 1, 2016 I take tegretol 1200mg and neurontin 3600mg, both the maximums and at the moment the pain is under control....sometimes it comes through the meds but i can't take anything more. I had radiation for the tumor in January and they said the tumor could swell up from that. And indeed i got more and more pain and more and more meds so i thought it was swollen indeed. In august i had my mri and it turns out the tumor was still the same size as in January, though dying! Which was good news tumor-wise but then why didn't the pain stop? My neuro surgeon said he saw a vein between the tumor and the facial nerve that is pressed into the nerve, hence the pain. And then i decided a little bit later that the tumor shrinking isn't going to solve this, doctor was also very sceptical about that so i thought, well let's take the bull by the horns and get the surgery.... The surgery is a definite plan, date set for January 26th... I'm scared for the actual surgery, it being brain surgery....the recovery but mostly scared of what if it won't work? In one way i am fortunate that there is also a tumor because I'm taken very seriously, also at work which I'm unable to at the moment, but also at the doctors, i immediately got the best neuro surgeon of the country and he right away told me he would do pretty much what i want to do.... I'm sorry yourroad is so very hard, as if the TN isn't hard enough you also have to fight the doctors....it's such a struggle! I was so very lucky to have a dentist who recognised it immediately, no needless tooth pulling, i mentioned the electric shocks and he knew what it was and got the ball rolling.... The meds are hell as well....which is also why i want the surgery cause I'm just a shell of myself, a walking zombie with a memory of an 80 year old.... They don't call this the suicide disease for nothing! Link to comment
sara-pezzini Posted November 1, 2016 Author Share Posted November 1, 2016 Do you find you could sleep for days on end?yes yes yes yes! I sleep more than I'm awake! And still tired! Link to comment
sara-pezzini Posted November 1, 2016 Author Share Posted November 1, 2016 Not to mention the brain fog . I took dinner from the freezer last night for this evening to be thawed in the fridge.....wel i have two freezers and this was upstairs and yes you guessed it, i put it in the freezer downstairs instead of the fridge and i had no dinner tonight! Hahaha so annoying! Link to comment
Seraphim Posted November 2, 2016 Share Posted November 2, 2016 I never remember ANYTHING and my processing speed so slow. I put water on to boil last week and fell asleep for 3 hours. Link to comment
sara-pezzini Posted November 2, 2016 Author Share Posted November 2, 2016 Haha yes familiar....i have to write down everything, have alarms for my meds, and i even find it hard to talk, i lose words or lose where i was going or can't find the words anymore, so annoying! Link to comment
Seraphim Posted November 2, 2016 Share Posted November 2, 2016 Haha yes familiar....i have to write down everything, have alarms for my meds, and i even find it hard to talk, i lose words or lose where i was going or can't find the words anymore, so annoying! Yup yup and yup. Link to comment
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