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Feb 20, 2017 · Trigeminal Neuralgia* in Brain & Nervous System

Hi Colleen: Just a quick question. I’m not very computer savvy – just a good typist. Please tell me what it means to put “@” before someone’s screen name. Am I supposed to be doing that all the time? I don’t even understand what this thing call “hashtag” means. I think it is the pound sign – # Am I right? Let me know if I should be using the @ symbol all the time. Take care, MoonEagle (Judy)

Feb 20, 2017 · Trigeminal Neuralgia* in Brain & Nervous System

Hi Katydid … Yes, Riverside is very close to me, about 3 miles SE of where I live. Does your sister live by or with you? That terrible monster (cancer) has not hit me yet, but it has gotten many others in my family. I was happy to read that you attend advocacy meetings – talking and the exchange of ideas is just about the only way to figure out a problem. I hope her cancer is treatable, even though it is rare.

Have you seen the neurologist yet? Knowing that you understand the importance of being your own advocate (and for your sister), remember to bring a list of your concerns and questions. Don’t let this MD brush you off. I think I told you before that I went through three neuros before I found the right doctor, and he runs a pain management clinic. See if the neurologist you are going to see is affiliated with a PMC or see if there is one in your area. I know I had mentioned the medication Lyrica in my other note, so maybe after this MD listens to your concerns and determines that you actually do have TN – what else could it be?, but he has to make a definite diagnosis – ask whomever you end up seeing if he/she thinks that Lyrica would help. After having this monster rule my life since Aug 1999, I thought my whole world had turned around and I was going to be myself again (at age 54 in 2002 – now I’m 69, eekk) until I developed one of its side effects. That is what happened to me – but it doesn’t mean it would happen to you. It also doesn’t mean that Lyrica would be the right drug for, but I’d sure ask to try it.

I dread remembering the medication trials I was put through, the six steroid procedures, and all the anti-epileptic drugs, the incredibly dangerous opiods, etc. which took over two years for me to go through and never really helped. I began losing hope with all the pain and … sorry to say – not wanting to live. Oh, in 2001, I was also diagnosed with an autoimmune disease called scleroderma (Google it), also called systemic sclerosis, which is eating up my body inside (it is what will do me in one day). In 2003, if it weren’t for one of my cats (my black beauty Mickie) I would not be here today. Alone in the house, I spilled out onto the bed all the Valium I had, the Norco, and some other drug, and had a huge glass of chocolate malt (my most favorite drink), and I was ready to die. I wrote a note for whomever found me and put it on my husband’s pillow on his side of the bed, and it read: “No ceremony; just gone.” Well, Mickie was a pest of a cat and he was always hungry. He was able to open the door handle of our bedroom (brat), mainly because it didn’t close all the way (ha!). He proceeded to jump up onto the bed (meowing like he had never been fed in all of his 15 years!!) knocking onto the floor ALL of the meds I had just poured out onto my side of the bed. Off the bed he jumps to investigate, and such fear as I had never felt before in my life overtook me, and I rushed him out of the room – with him REALLY meowing loudly now. I had to make sure that not ONE of those drugs could be found by any of our cats (we had 4 others) – who luckily were sleeping at the time, but – no – not Mickie, my love. It took me over an hour to find and count out all the drugs. They were under the bed, all over the floor, under two dressers, and some stuck under my blanket.

Well, that taught me a lesson. Feed Mickie 100 times a day. I gave that black beauty (and he was) a huge bowl of tuna, which then woke up the four other cats, and I had to feed them tuna also. I laid on the living room floor and let them jump and hop all over me, lick my face (on which I had put some tuna), and I fell in love with life again. And the best part of this story … during all that time – finding the pills, feeding the cats, playing with them like I was one of them (they always liked that) – I DIDN’T HAVE ONE PINCH OF PAIN. My mind took me to the place I had to be … save my babies.

Katydid: I meditate also. It calms me, especially when the pain hasn’t abated yet, and this is what I say: “Relax the mind, relax the body, relax the mind, relax the body” … over and over and over. At times, my husband Harvey will sit with me, hold my hand, and whisper the words with me. My body relaxed while I was playing with my five cats (they are all gone now, but we have five more – yes, we are cat fanatics) because my mind was not on the pain, only on knowing my babies were safe.

Oh, now I’m crying because I have pictures of those five cats above my computer and I can hardly see the computer screen to write anymore. Please keep in touch. And I will pray for your sister – she has you as her advocate. All my love and caring, MoonEagle (Judy)

Feb 18, 2017 · Trigeminal Neuralgia* in Brain & Nervous System

@katydid P.S. Never forget to live as much of your life as you can and don’t give into this monster. Eat carefully and eat soft foods. Liquids are just about what I live on. MMMM Chocolate malts!!! Also, my husband is just about the only man who can tell his wife to shut up … so the pain won’t start. Really!!! Take care.

Feb 18, 2017 · Trigeminal Neuralgia* in Brain & Nervous System

Oh dear Katydid (LOVE your user name) … Would you mind telling me how and when you started feeling the facial pain? What side of your face is affected? Yes Katydid, eating and talking plus wind and air conditioning are the most common triggers in my case, and it sounds like they are for you too. I used to ride my bike religiously up until the pain began. I want to give you as much advice as I can because you are in the same spot as I was 16 years ago. So, here’s my story. I am a bit of a writer, but haven’t published yet – usually children’s stories – but the pain has stopped the stories from forming in my mind.

In Aug of 1999 I went to the dentist to have teeth cleaning done on my bottom right teeth. Well, this dentist was a 3rd year resident at a prestigious teaching hospital and he was about to go into practice with a dental group in October 1999. And, as my mother and I did for many years while she was still alive (died in 1969), she and I always went to dental schools to have our teeth worked on because the cost was nominal. So that’s why I decided to choose this dental school connected to the teaching hospital. He started to give me the novocaine shot in the right lower jaw when I made a screaming noise and jumped out of the chair – luckily he had already taken the needle out of my jaw. Jokingly, he said: “Oh, I must have hit a nerve. Don’t worry, you won’t feel any pain now because the novocaine will take it away.” And it did. After that I didn’t think about what had happened. Then the creepy crawlers of nerve pain began a few weeks later, and I just figured it was my bad teeth, which I’ve always had. Now I am going to digress a bit (which I do a lot because Norco makes me …. uh, loooopeeee at times.). DON’T drink as much caffeinated and carbonated pop as I do. I am a diet Pepsi addict. I began drinking regular Pepsi when I was 15 and then graduated to diet when it first came out. No matter what I’m told about how bad caffeine is, if I’m going to have this pain no one is going to take away one of my only pleasures in life! Not drinking the pop wouldn’t help anyway.

Beginning in 2001 the MDs I saw put me on every type of drug used for TN – mostly anti-epileptic drugs which were completely ineffective, phenobarbital, methadone, mexitil, oxycodone, morphine tablets .. I can’t remember all of the others right now. In 2004, I started going to a pain management clinic instead of individual neurologists, and they started me on Norco 325 mg with ibuprofen in it and Valium 10mg 3 times a day. However, after taking Norco’s 325 mg (hydrocodone with ibuprofen) since 2004 it has lost most of its effectiveness. Beginning last year they now allow me to take 2 at a time up to 6 a day along with the Valium. As an aid to help me sleep, I am on Seroquel 20 mg, which I don’t take often because I sleep toooo long – over a day once. There is never a day when I am without pain – but not always severe enough to make me stop what I’m doing. But, I’ve never gotten below a 4 on the pain scale.

The ONLY drug that gave me and relief was Lyrica – used for nerve pain in fibromyalgia mostly (I’m sure you’ve seen the commercials). I took it for almost two months in 2006 and was in low-pain heaven – never having pain higher than maybe a 4 to 5 on the pain scale – and I can handle that. But I developed one of its side effects – eye vision problems which caused such blurriness that I was not even able to walk around the house without saying: “Oh, hello wall, how did you get there?”, and not even able to read or watch TV. I am an AVID reader and I was devastated. So I had to come off the Lyrica and be restarted and tried again on all those other drugs until finally it was decided that I should just take the 325 mg of Norco with ibuprofen in it along with 10 mg of Valium.

I have had 6 stellate ganglion blocks steroids shot into the neck getting as close to the brain stem as they can. The trigeminal nerves come out of the brain stem with one branch going up the left side and the other going up the right side. I USED to joke around with the doctors and say: “Oh, I’m just a bundle of nerves!”. I no longer joke around. It took almost two years to even be diagnosed with TN because I felt my pain was from infections and rotten teeth. The nerve blocks did not work because the pain was still on the right side of my face when I came out of the sedation. One MD had the nerve (pun) to say that I was lying. Why would I go through the procedure and then have to pay the cost of it if I thought they wouldn’t work?

Now, seriously, learn as much about TN by searching the internet. Especially (!!) Google ‘brain stem’ and other sites that will give you information about the cranial nerves (there are 12 and they all go in different directions to do their jobs.) The trigeminal nerve is the 5th cranial nerve. Study up on your condition. The trigeminal nerve is the 5th cranial nerve.

You asked if there is anything you can take or do until your neurologist appointment in two weeks. I can suggest but I don’t want it thought that I am prescribing any one thing over another. Before all those drugs I was on, I took OTC ibuprofen 800 mg about 4 times a day until my stomach told me to stop doing that. My husband was sweet and tried to help by giving me small hot wet towels to put on the right side of my face until I told him to please put a plastic bag on my pillow first! At first, that did help a bit, like about a few minutes, but you might try a small heating gel pack. At times, I still use one.

Over the past 16 years, I have been to the ER 10 times with intractable pain. My doctor isn’t on staff there but they called him the first time I came in with the pain (it was midnight!) and he said to start me on a morphine drip. It made me fall asleep, which was nice, but the pain wasn’t gone when it was time for me to go home – it was less though. I’ve never been admitted and there would be no sense to that, at least in my case. But when I got home, the pain came back, luckily not at a 10+++. And, yes, sorry to scare you – can’t say this will happen to you – but I have had 10+++ pain. The last two times I’ve been to the ER (last August and November) the ER MD who saw me took the time to read my computer chart of all my prior visits, and I heard her say: “This is ridiculous.” On her own she decided to give me one intravenous injection of a medication called Dilaudid – which I’ve been told is 10 x stronger than morphine. I don’t know, maybe it is, but the ER at my hospital now knows that if I come in with a high pain score, I am to be given the Dilaudid. Katydid – it was a miracle to feel no pain anywhere, not even in the broken right foot which I had broken a week earlier and for which the ER me in a cast. Like I said, 2 Norco’s at a time is a lot to take but one does what one needs to do – only if your doctor says you can – and I fell down three stairs and broke my right foot because I was loooopeeee !!!

I will have you on my mind Katydid until I hear back from you, and please do contact me through this website and let me know. I am anxious for you, but I am also encouraged for you because you have taken the first step toward being your own ADVOCATE. Being you own health-care advocate is knowing all you can about your condition AND by asking questions … lots of questions until you feel you understand your problem and what treatment the doctor has planned for you. AND, most importantly about asking questions – now don’t forget to do this – bring with you a list of your concerns, symptoms, and questions that you want answered. Some MDs don’t like inter-active patients, so if you feel this neurologist is giving you the brush off find another one. I saw 3 neuros before I found the MD I see now. What still amazes and seriously aggravates me is that some MDs don’t want to treat a TN patient. I have had two ER docs tell me straight to my face (this was early on when I first knew the diagnosis) that since they couldn’t SEE my pain they wouldn’t treat me because I was only there to get narcotics … drug seeking they called it. If you ever get an MD say that to you – an ER doc or one in the office – do what I did. I called the medical director of the ER and the hospital and told him what happened and gave him the names of the two MDs who said what they said to me, and I found out that they were severely reprimanded. This is an example of what I said above – Katydid you MUST BE YOUR OWN ADVOCATE !!!!

I wish they had emoticons on this site because some of the good ones can tell someone’s story so well. But I’ve said enough for now because my own pain is acting up. It’s my own fault. Today we somehow got a 68 degree day (I live in a suburb 15 miles west of downtown Chicago), and I forgot that the window behind me is open … aaahhh the warm wind. Don’t let warm wind fool you … wind is wind.

Like I said I will have you on my mind Katydid, and writing all of this to you has just become a story in my mind … which hasn’t happened in a long time. May I ask your permission to use your name, Katydid, as the name of the 8-week old female kitten I am getting tomorrow. We are feline lovers in this house, and over the past 22 years we have had 11 (not all at the same time – but it wouldn’t have bothered me at all …. yeah, I’m THE cat lady in the neighbor). I better not go any further, first because of the pain and second because I need to get my pencil and paper to start writing my story. Always use a pencil in case you need to erase – which I always have to do to find just the right word. Guess what the title will be: Katydid. The love and empathy an animal can give a human being. EMPATHY – always show that to others or at least have it inside of you. It isn’t sympathy. I have empathy for you because I can place myself in your position of living with this pain monster.

P.S. I sent two picture files and I hope they show up because I don’t see them in this reply. Take care. MoonEagle (Judy)

Jan 18, 2017 · Trigeminal Neuralgia* in Brain & Nervous System

Hi John … Thanks so very much for answering my post about this monster called trigeminal neuralgia. I will check out the website you included. Any information on this pain is helpful. About the small search icon – I can’t find it, but I will keep looking. My eyesight is failing a bit, especially in my right eye which has become affected by the neuralgia pain. I used to have 20/20 vision, so it upsets me that now I even have trouble reading books, and I read constantly. A page size magnifying glass has helped greatly.

We all have our pains and problems – right – and all through my life I used to say to myself that there are so many people in the world worse off than I am and having more pain and trouble than I am. Thinking that used to help me a lot by giving me strength to push through whatever pain or problem came my way. But recently I am finding it very difficult to let other people’s pains and problems keep me from minimizing and trying to ignore my own pain. I just can’t do it any more, but I have accepted the fact that this is the way my life is now and maybe one day the nerve will get tired of firing and stop hurting me. I also have an auto-immune disease called scleroderma with a host of its overlapping syndromes.

But the very worst thing happening to me right now is that some squirrels have been biting the cable wire that goes to my TV !!! and now the TV in my room no longer works. You’d think they would be nicer to me because we feed them peanuts every day. Oh how rough life can be especially when I miss my favorite programs !!! However, I am an avid and eclectic reader, so with no TV for a while maybe I’ll finally be able to finish War & Peace ! I’m over half-way through with it now and I can’t wait to find out what happens at the end !

I have a thought .. which I plan to write to Colleen about .. I think the newest posts and replies should be at the top, not the bottom. It takes a long time to go through them all, especially those from last year. I want/need the most recent posts and replies to be at the top because, as I said, my eyesight is beginning to fail especially in my right eye. And I think it makes more sense to have the most current post and replies at the top of the blog page. I’m having eye surgery in February for whatever the MD said I have, so I hope it fixes my eye problems. I used to have 20/20 vision – I used to weigh 130 lbs, and I used to be much younger !! I’m 69.

My real name is Judy, not Mooneagle. That’s just my user name and I don’t mind that Mooneagle comes up as my name on the posts and replies. A Lakota Sioux elder gave me that name. A long time ago after attending a 3-day Native American gathering, he came up to me and looked deeply into my eyes (they were working okay at that time) and he said that, after watching me those few days, he said that I have an eagle spirit and that I was always looking up at the moon, when the clouds don’t cover it over! I still do. That was the most spiritual moment I ever had in my life. Oh, I do babble on sometimes. I hope you don’t mind that this reply got so long.

Again, thanks John for your reply and for the website.

Sincerely, Judy

Jan 12, 2017 · Trigeminal Neuralgia* in Brain & Nervous System

Is there anyone in this particular group who has trigeminal neuralgia? I have been suffering with it for 16 years and I just about can’t take the pain anymore. The pain is one-sided, as it usually is, and it covers the whole right side of my face from the chin up to my forehead. It affects my right eye when I have the pain and I can’t see very good at that time. It was caused by a dentist hitting the trigeminal nerve (5th cranial nerve) while giving me a novocaine shot in my bottom right jaw. Oh, he joked and said the pain will stop after the novocaine takes affect. It took over a year for me to figure out that the excruciating pain I was having was not due to bad teeth. I have been going monthly to a pain management doctor for the past 15 years and all he could do for me was try every medicine that treats nerve pain, a whole slew of anti-epileptic drugs (didn’t work), morphine, fentanyl, oxycodone, methadone, and other I can’t remember. Now for the past 12 years I have been on Norco 10 mg with 325 mg of acetometaphin along with Valium, Nothing really works, so he has allowed me to take up to six Norco tablets and 3 Valiums in one day, and then use a sleeping pill (Seroquel 20mg) if the pain hasn’t calmed down. I sleep a lot. There are days when I have only minimal pain – 5 to 6 on the pain scale – but the bad days are 10+++ (not making this up). Eating, talking and the wind are the triggers for this pain, so I’m somewhat stuck in the house unless it is warm and not windy. I have had 10 stellate ganglion blocks and they did nothing. So his only other idea was to sever the nerve. The trigeminal nerve gives feeling to the face, and severing the nerve is really not an option for me because he said the right side of my face might droop a bit, and also that the nerve could grow back. He said that, if it were to grow back, it would be “mad”. That’s the word he used … “mad” … because that’s the term used in relation to nerves that are fiddled with. So I’m wondering if anyone else has this monster of a nervous system disorder and if anyone has had any relief. Thanks for your time.

Jan 12, 2017 · Trigeminal Neuralgia* in Brain & Nervous System

I am very sorry to hear of your father having this horrible problem. I just posted about my 15 year journey with this monster, and I wish I had some answers for you because I am looking for some too. I was put on Lyrica in 2002 and it helped greatly except that I had a side effect from it – my eyesight became so blurry that I could not see, and that is one of the listed side effects. If you read my post you will find out what I’ve been through and how nothing has helped. How did your father – at his age – develop this? My pain doc said that if I live to be 80 or 90 (I’m 69) the nerve should wear itself out by then -oh joy I thought. I wish your father hope and pain-free days. He should be enjoying this time of his life, not living in pain.