Hello everyone. I am so grateful to have found this site and for the support I have already received! Thank you Scott, Min, and Patty for your words of encouragement. They really mean a lot to me. So good to know that there are others who know what it is like to go through this. Because the shocks have come and gone over the years, I am somewhat new to TN and I am quite terrified. I have 3 kids - ages 12, 9, and 9 months and it scares me so much to think of the possibility that this pain will be in my future with them! I am terrified to shower, wash my hair, forget about washing my face... brush my teeth, eat, sleep - how can I not do these things and keep up with the kids? I also worry about driving. I can't imagine having a shock while driving them to/from school/sports, etc. Also, I am nursing my 9 month old and wonder what, if any, medications I could take to lessen the severity of the shocks. I don't want to sit around all day trying not to have a shock and I absolutely don't want to feel sorry for myself. I have got to find a way to make peace with this and live my life. I don't want this me to be the mom my kids remember. It truly is comforting to know there are others who get terrifying shocks every time they touch their face - I would certainly NEVER wish this on anyone, but it is comforting to know others are going through this and WORSE. I can't imagine having this on both sides of my face or having it so bad that I can't even go outside and feel a breeze. Scott - your story of having 500 attacks per day is hideous! I can not imagine what you have gone through.
I would appreciate any advice/opinions regarding:
Any medication people have had while nursing
What experiences people have had - does it get a lot worse from this point? Right now, I have pretty much constant tingling on the left side of my face - if I wash my face, it sets off a full blown electrical shock series that lasts probably 10 seconds. If I brush the top left portion of my teeth, I have the same. If I touch my forehead, it usually is just a couple of bad shocks.
Does dental work make it worse? I had a cleaning done in June and since then have had on and off attacks, but nothing as bad as this most recent attack.
Does flying make it worse? I just returned from a trip to see my dad who is very sick with liver cancer. Time on the plane was 6.5 hours one way - would that have set off this most recent terrible attack?
I have made an apt with a neurologist recommend on this site so hopefully he will be able to help.
Thank you so much for the reply! I would LOVE to do the MVD. Out of all the surgical options, it truly seems to have the longest period of respite from TN. 30 years in remission sounds pretty good to me! I REALLY don't want to take any meds. I hate drugs and all their side effects - just want to do whatever I have to do to be able to be a good momma to my kids. And I won't give up nursing... I can tell it is progressive =( Each day seems a little worse. I have not been washing my face or hair for like a week and trying to eat slowly, NEVER touch the left side of my face, only kiss my baby girl on the top of her head, etc. and the shocks are still coming. So I am like - forget it. I am just going to live and deal with it. I just can't imagine it getting even worse =( There are so many brave people on this site! So many good role models =)
Hi LinaBeana, so sorry to hear of your pain, non of us should have to suffer this awful disease.
You need to let your GP know if you haven't done so already, start with some medication to see how your body reacts.
Having a family certainly helps, you will find yourself getting stronger as the days, weeks, months, even years go by. Your children are your first priority and this will help develop your coping mechanism ten fold, you will learn to manage and hide the pain from your young ones.
You body will grow in strength to fight this pain, your body is strong so be positive even through the worst times.
You are certainly correct in saying you want to make peace with this awful disease, just make sure you are always in-charge.
Thank you so much for your words of encouragement. I truly hope I am able to develop the strength I need to cope with this and take care of my kids. I saw a neurologist today and talked with him about the MVD procedure. He said I would be a good candidate and scheduled a MRI 1.5 Tesla with and without contrast. But now I am reading a 3 tesla may be better? Also, the neuro I saw today has a form to sign stating he does not have malpractice insurance - isn’t that weird? I have an apt next week with someone else. I am just terrified this will get worse between now and then. It seems to get worse every day =(. And I don’t think I should be driving since I have the sharp electrical shocks. With no family in the area to help this just all seems so hard =(. But I know we are never given more than we can handle…
I will definitely watch it. I saw a neurologist today and was all set on demanding a MVD. He seemed to be agreeable to doing it - but now I am not sure. I spoke with another specialist and he said it is advisable to first try meds and see if they work before the MVD because the MVD is not a minimal operation. We spoke about what could help me while I continue to nurse my little girl and he is advising I get an alcohol injection. Have you ever had an alcohol injection? He said I could have remission for anywhere from 6 months to 3 years. I am thinking it may be a good idea to try the injection, then maybe see where I am once Isabella is weaned, then try the meds, then try the MVD? Would you have gone straight to the MVD if you had it to do all over again?
Many many here…waited too long…best stats say do in first 3-5 years BUT since yours is off and on… I wouldn’t think 3-5 applies to you. But a good question to email dr. Casey that simple question…he could give a possible ball park, cause he has had his hands in thousands of heads!
Many on meds cant work… Cant drive, Cant spell
.the anti seizure meds made me a zombie at a low dose…lost my IQ…couldn’t call my 3 dogs by right name…couldn’t pass a job interview… I had my masters at age 47… i was in a fog
I tried the meds… 3 of them within 12 months… I hated myself i had to quit my first job out of college… Bad depession.
I saw video, emailed casey , asked who he recommended in my area if his wife needed MVD… He couldn’t recommend here…said he would do mine.
He sent me some questionnaires, and medical TN history
Had no compressions showing from my local neuro…casey does not rely on them… He goes by patient story.
It did help that i tried meds…as far as insurance … Too many side effects… They gave the green light.
I got diagnosed oct. 2010… I was on his table 12 months later. I believed in him…he doesnt need the money…its his passion to the core.
There are a handful of surgeons that have his track record.
Another is dr. Lim in baltimore…john hopkins
You can even email dr. Casey …he answers…ask who is the best in florida to recommend!
Good morning! I searched for it and not a whole lot came back. I still really want to do the MVD and will email Dr. Casey. I just need to get functional. We have no family here to help us and we have too much going on for me to be out of commission =(. I am hoping doing 1 alcohol injection will not mess me up for a future MVD. I just don’t know what else to do. I don’t want to give up breastfeeding and can’t live like this! Stinks =(
Your story is so encouraging to me =). I appreciate your helping so many on this site. I hope to also one day be MVD success story =)
I have not yet received a prescription for the lidocaine. I can't open the attachments - it takes me to a yahoo page to sign in. I had the alcohol block done Friday and have not had a shock since!! I still feel tingly sometimes, but have had no terrifying shocks. I have been able to wash my face, take a shower, brush my teeth, eat, drink, sleep, and kiss Isabella's belly!! I miss feeling like this so much... My face is all swollen, but if I had to walk around like this for the rest of my life to not ever have a shock again I would totally do it. So I want to use this time to gear up and be ready. I want to get the lidocaine prescriptions - to numb my face before the alcohol, the Dr. used lidocaine and it felt so much better - I could touch the left side of my face and no shocks. So I know that will be essential. Are the links prescriptions you received for the lidocaine? I am also going to email Dr. Casey.
I emailed Dr. Casey and he emailed me back right away. He seems very compassionate and willing to help. Thanks so much for the referral =) Alcohol block is great - no shocks. Left side of my face is numb, but no shocks. I am loving feeling "normal" again =) So nice to have some time to figure out what the best next step will be without being in terrifying panic mode.
Hi Lina, may I suggest you find GROUPS on the black header, click and look for TN and Pregnancy group. You could ask the other parents there how they handled nursing and TN.
I thought my life was over. I had little life value and thought my days would be hell forever. But guess what? I found a great neuro and she helped me put my life back together. I now have an almost normal life. I am a functioning wife, mother and 2 store manager. There is always hope, thankfully!
Nice to meet, wish it was under better terms. I am sorry you have this horrible disease with the rest of us. It does not get easier to deal with and it is very progressive. I am Thrilled for you that the Alcohol blocks worked for you. I must have had 15-20 of those and none of them ever worked. I also had a surgery do that is still experimental. It did not work but I still have radiation burn marks on my neck from it. Now back in June of this year I had the Gamma Knife done on one side of my head and I can tell a difference I go next week to my Neurosurgeon, oncologist and radiologist for a checkup and to schedule my Gamma Knife on the other side. So basically as you see from what every one says it affects everyone differently. I would say the hard part is how you and your body decide to deal with it. I am adding you and your family to my prayers and I know you are strong. You have 3 kiddos so I know you can fight this plus-------- you have all of US here to support you.
I know exactly what you mean - it is so hard to look into the future and know this terrible disease may be part of our lives! At times, it does feel like life is over. I am glad you have such a great neurologist who has given you hope. Thank you so much for the Groups tip - I will definitely look into that. Your message brought me hope! To know you are now functioning encourages me...
Jackie said:
Hi Lina, may I suggest you find GROUPS on the black header, click and look for TN and Pregnancy group. You could ask the other parents there how they handled nursing and TN.
I thought my life was over. I had little life value and thought my days would be hell forever. But guess what? I found a great neuro and she helped me put my life back together. I now have an almost normal life. I am a functioning wife, mother and 2 store manager. There is always hope, thankfully!
Thank you for the words of encouragement. So thankful to have found this site where we can all fight this together. So sorry you are going through this as well.
Sedona said:
LinaBeana. just sending light to you today for your situation, im new here Sedona :)
Nice to meet you too - I also wish it was under better circumstances. I am sorry you are going through this too! Stinks. And there just isn't a reason "why." I am glad the Gamma Knife is working for you. So glad you are able to have some relief. Thank you for adding us to your prayer list. It is truly humbling to me how many people are praying for me and care about me. I have talked with several neurologists this past week and they don't know me at all but are so kind and compassionate and willing to help me. This support group is amazing - so many people that don't know me at all and yet they are willing to go through this with me. And everyone I have ever known is praying for me. I feel so incredibly blessed in the midst of all of this terror...
jrulz1 said:
LinaBean
Nice to meet, wish it was under better terms. I am sorry you have this horrible disease with the rest of us. It does not get easier to deal with and it is very progressive. I am Thrilled for you that the Alcohol blocks worked for you. I must have had 15-20 of those and none of them ever worked. I also had a surgery do that is still experimental. It did not work but I still have radiation burn marks on my neck from it. Now back in June of this year I had the Gamma Knife done on one side of my head and I can tell a difference I go next week to my Neurosurgeon, oncologist and radiologist for a checkup and to schedule my Gamma Knife on the other side. So basically as you see from what every one says it affects everyone differently. I would say the hard part is how you and your body decide to deal with it. I am adding you and your family to my prayers and I know you are strong. You have 3 kiddos so I know you can fight this plus-------- you have all of US here to support you.
This is my first post. It's so great to be able to communicate with other patients.
I've had intermittent teeth pain for over a year. No electric shocks, but severe pain on the top left and sometimes bottom left teeth. No touching that area! I've seen several dentists and endodontists, who say it is not my teeth or a periodontal issue. I tried acupuncture and herbs, and it worked for a while. Then the pain came back and my GP diagnosed Gabapentin over the phone. It worked for about three weeks and then the pain started to come back, so she upped from 3 to 4 times a day. The pain worsened, and I had serious side effects. I told her I needed to stop it, so she prescribed Carbatrol. This is all without a proper diagnosis. Since Carbatrol requires a liver function test every three months and I am sensitive to medications, I declined. I asked for a referral to a neurologist.
For those of you on Medicare, you should know that larger neurological doctor groups will not even make an appointment without a supplemental insurance policy. I have AARP Medicare Complete until the next open enrollment period, when I will switch to a supplemental policy. I was lucky to find that the Cleveland Clinic in Weston, FL, accepts my insurance. I have an appointment with them on Jan. 5th, and I'll report how that goes.
A health practitioner suggested that I have my B1 and B12 vitamin levels checked. A deficiency could cause the myelin sheath protecting the nerve to deteriorate. Just in case, I started to supplement those vitamins.
I am 69 and have never had a serious health issue, so this is all news to me.
Wishing everyone good luck and a Very Happy New Year!