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10-22-2010, 03:57 PM | #1 | ||
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Junior Member
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Hello everyone
This is now my second round with TN and it doesn't look like there is much help around the corner. I wasn't sure what was happening the first time I was hit with what felt like a bolt of lightening that dropped me to my knees but it scared the heck out of me and the pain that followed for 10 months was the worst pain imaginable. I suffered for those 10 months because I could not get a doctor to believe me.I went to Mcmasters in Hamilton and had an MRI but was later told by my nuero that I had TMJ which I know I don't. I had bilateral pain but never at the same time, it would switch form one side to the other without warning... I was later put on tegretol and neurotin because I told them I was giving up and I was at that point.I couldn't function any longer, emotionally or psyically.... The drugs were making me sick so after 6 months I slowly weaned off them and was doing great with only the occasional twich of pain and lightening strikes to my face and I was coping well... Two weeks ago I was once again struck with a jolt that dropped me to my knees and the pain has been with me since..I am back on tegretol since Monday and it is helping but will take time to build up to rid me of all the pain.... My problem- why don't they try to find out the cause instead of filing me full of drugs that turn me into what feels like a zombie....is it possible they missed something on the MRI? I've heard that has happened before..Seem they want to mask instead of getting to the bottom of what is causing this..... I don 't want to live this way because I can't function on these meds and the longer I take them the worse I become..this isn't living and I am starting to feel depressed and how can one not when you are fighting the worst pain imaginable....I don't know what to do but one good thing that happened today was my daughter who finally got me into see her doctor this coming Monday..she's a investigator and gets to the bottom of things, quite different from my present family doctor..hopefully she can help me and thank god I am one stubborn woman or I wouldn't be here today..... sorry abuot my rant but I am feeling down and crappy and exhausted from fighting pain..hopefully this med will build up quickly in my system to give me some relief..... |
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08-04-2011, 01:31 AM | #2 | ||
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Junior Member
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Thank you for this article. This is the first write up I have been able to find about people caring for a TN sufferer. What do you do when you can't do anything to alleviate their pain? I'm a lurker but hopefully will start posting as I navigate my way around this site.
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"Thanks for this!" says: | Burntmarshmallow (08-08-2011) |
05-24-2013, 07:27 PM | #3 | ||
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New Member
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As your posts are very wise, I have a new question. If it needs to go somewhere else, please let me know. I am new to this group and still trying to find my way around. I have TN and had Gamma Knife surgery which made it worse. The slightest breeze or cold wind sets off an intense pain that will go on for hours. I take Baclofen and Trileptal, (I have Percocet but do not like to take it). My question today involves clothing. In the winter, I find loose fleece headbands, scarves and hoods helpful but summer is another story. Do you know of any sites that have clothing for people with this type of pain?
Now regarding your post, I did send a "thank you" a few days ago. My husband does not have a clue but he tries; for which I am grateful! His suggestion of wearing a ski mask was appreciated but I can't even imagine how much that would hurt! My brother has RA and as a Neuro Biologist, he does understand. So, that helps! I am lucky in so many ways. At 61, I was able to get Disability and can stay in the house when I want to. I also have two cats. They never judge me and I do not have to take them out for walks. I think animals are great healers. Thanks again for your words of wisdom! |
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09-03-2011, 05:38 PM | #4 | ||
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New Member
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Hi
Thank you for your post. I have an AVM. I was born with this, and it was first found in an MRI 13 years ago. While testing for my symptoms of facial pain (Neuralgia - They didn't know it at the time) 2-1/2 years ago, I had another MRI. These results were compared to the MRI from 13 years ago, and they found that the AVM had grown from 2cm to 2.3cm x 1.2 cm, and had hemorrhaged.(I had an event 3 years ago when this happened, and a small stroke). I was alone and confused when it happened. I got severe spins and puked like I was drunk, and it happened suddenly. It was really scary. I fell asleep for an unknown amount of time and half my face sagged for a week. I was also very slow for the first week. I have 2 conditions that I have been dealing with, and am on medication for 1. Arteriovenous Malformation (AVM) 2. Glossopharyngeal Neuralgia I have read that the AVM can provoke Neuralgia. I do not know if that is the case for me or not. I am on 150mg of Lyrica (pregabalin) 2 x daily for the Neuralgia pain. I am on 5 mg Imipramamine 1 x daily, for the head pains associated with having this mass in my head. Both meds are very strong. If I forget to take a dose, I can suffer for 2 to 3 days with something similar in feeling to a hang over. I have seen a neuro surgeon, and I was told there is 100% risk of complication if surgery is performed for either (both) conditions. I still see my neurologist on a regular basis, and saw him a week ago, last. I've been on these meds for approx 2-1/2 years. They were hard to get used to, and did make the pain far less than it would be without. I've been asking for 2 years to get off of the drugs, and have tried acupuncture, as well as a bad, expensive experience with a quack that did electro-acupuncture, and prescribed Borax, Iodine, Magnesium, and something he called Remedy (water in a bottle the he says he agitated to a particular frequency) I'm a 53 year old, male professional, with 37 years in my profession. I'm struggling with the symptoms of the conditions, and the side effects of the meds, and it seems to be getting worse, creating a higher dependency on the drugs I want to get off. It's a horrible, vicious circle. My memory and my vision have been dramatically affected, and are getting worse. I'm now recognizing episodes of behavioral, and emotional problems. I feel as if I am losing my sanity at times. My neurologist, who cannot think of any alternative treatment for me, wanted to refer me to someone who could administer stronger drugs. I expressed that I so not want to do that, as I have been trying to get off of medications. I feel that it is becoming increasingly difficult to perform my job as a professional. My personal life has been heavily impacted. I have no social life, and have lost my ability to live normally. I alerted both of my now adult, kids 2 nights ago of where I'm at today, explaining everything, and indicating that I need help and that I am reaching out for that help now, to them. As my conditions and the dependency on the meds worsen, I am seeking urgently needed support and help to try to regain the ability to live life normally. Thank you Ed |
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09-10-2011, 01:10 PM | #5 | ||
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New Member
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I want to say Thank you! I was diagnosed with TN about 1 year ago, after feeling like I was going out of my mind. Went to so many different doctors and was told I have TMJ, Migraines, and yes, it is all in my head. It was when I took a trip to a sinus doctor that he knew right away what I was suffering from. To make a long story short, you took the words right out of my mouth. Something that I wish I could just hand out to people that look at when I am going through a bad moment of pain, or trying to enjoy a meal out with my fiance and people are looking at me and wondering why I am making funny faces..... Thank you again... Scarlet Dreamer
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"Thanks for this!" says: | Burntmarshmallow (09-10-2011) |
09-10-2011, 10:34 PM | #6 | |||
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Grand Magnate
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I recommend printing it out / making copies and sharing it with those around you... sorry for all your pain i AM sending low pain your way.
PEACE BMW |
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12-16-2011, 06:36 PM | #7 | ||
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New Member
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Hi there, I want to thank you so much for sharing this. it really helps people to understand what i've been through. I'm from Colombia South America and I noticed that there is not to much information about TN, I'm blessed for having the chance of getting an MVD in US but I know there are many people back in my country who don't have the access or the money to get TN treatments done and would appreciate the kind information like what you posted here. So I would like to translate this article to Spanish and add the authors name in it. Do you mind giving me some more info about Aka Tracy? I would love her to know what I will do with her article.
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12-16-2011, 11:07 PM | #8 | |||
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Grand Magnate
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Hi marcela. I got the article from Tracy but she did not write the article. I am not sure but I think she got it from the book "Striking Back " But I also am checking with pal on Face book as I think one time in the past he said he wrote the article . I know Tracy did not write it but used it in her country to help her t.n association support group years ago . If I am able to find the author I will post the info.
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12-17-2011, 12:30 AM | #9 | |||
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Grand Magnate
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http://www.fpa-support.org/2011/01/caregiver-tips/
I believe this link will bring you to the one who wrote the Article ,Bob Moses... the above link is of an updated article on the TNA site . this article you are speaking of I believe is in the first "Striking Back" book. but I am NOT sure. I have passed my book along to a fellow t.n sister a good while ago. |
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12-18-2011, 11:52 PM | #10 | |||
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Grand Magnate
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Yes I spoke with Tots...Tracy and she said it is what they used years ago at the TNA site over in the U.K. so it could likely already be printed in Spanish ... Marcela if you would like to contact Tracy let me know by private message or on my profile page so I can pass the info privately. as far I as know the Article is copyrights of the T.N.A. site and the one who wrote it. not me or Tracy...
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