Keep in mind the cream is much, much different than the patch. The patch delivers medication the entire time you wear it.
Hi cowgirlk08
Iām sorry I havenāt responded. I went into a dark place for awhile and still fighting to stay out of it. The meds are not working any longer and weāve switched meds multiple times which havenāt helped. Saw a neurosurgeon who is recommending MVD. Iām feeling out of options.
When I was working I purchased Long Term Disability insurance so my family would still have income if something happened to me. They have denied my claim multiple times. The insurance company thinks I am able to work. Itās very difficult to do anything when the pain starts. I should hear soon if they approve my latest appeal.
cowgirl08 how have you been doing. How is your family. I havenāt been to this blog since the last time we talked but you and your family have been in my thoughts and prayers.
David P
Cowgirlk08
When you see this please reach out to me. Iād like to know how you are.
Hi David P
Iāv also not been on here things had gotten really
Bad for me stating around Christmas. On Christmas eve
I got my letter from disability and they denied me again.
Thatās when all my problems started at that point I started
stressing out I had my mom I was so worried about,
my friend keep calling me with her problems and things just keep
Pilling up. I went to see mo nero doc in January because the
pain was getting really bad with the cold weather and the storms it
Brought with it and he raised my oxcarbazepine to 900mg 2x day.
Around the end of January I had an app with my mental health doc
But they called and Rescheduled my appointment for February 14
I was also having problems with my balance and Speech
I had fallen 2 twice. and then one day I snapped it felt like
I wasnāt controlling my body I wrote letters to my family
went out side feed my horse sat down and took some pills. When I
Realized what I had done I could hardly move I was able to
get my phone and call 911 I was able to give them my name and
Address and where I was out side. At that Time my mom and dad
were Looking for me but I couldnāt answer back I couldnāt move at all
I was struggling to keep my eyes open they had also called 911 and
Were able to find me. They had to put me on a respirator when I
Woke up I felt so peaceful and felt like everything was going to be
Ok. We found out it was the oxcarbazepine and low sodium that
Made me snap and go crazy like that. So I am now off the oxcarbazepine
That helps my pain and now I am in more pain and trying to find
something else that will help with the pain. My mom made it through
her surgery and is doing well. Mentally I am feeling a little better
But I have been diagnosed with manic depression. I finally got to see
A mental health doc after the one I had canceled on me 4 times.
I think you for the prayers and I am still praying for you to find relief and
The same kind of peace I have been feeling also but not the way I got it
I pray it just comes to you.
I hope your family is doing well. And I am glad you came back. Oh and I
Fell I can share my name with you.
I am Kendra K
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Kendra K
I am so sorry for what youāve had to go through. I wish I could give you my cell number in private so if you ever have any issues like that again and have no one (doctor, loved one) to talk to you could call me. You could block your number. No one should have to do this alone. You could even call with good news. I can see how people can be depressed going through what you have. Plus I know from experience the pills we take only add to it. I will make a point of checking my email for any reply from you.
I am so glad to hear your moms surgery went well. That should help with some of your stress.
If I have success with my surgery Iām planning on moving to Georgia. I love the south and itās a lot less expensive. My wife and kids are for it. I should be able to go back to what I used to do till this crappy disease returns.
Take care and keep in touch,
Dave
Hi cowgirlk08,
Iām new to this conversation, but I want to echo what everyone else has said - please hang in there and keep fighting. Iām so glad you were able to call 911 when you took the pills.
If you donāt already have a lawyer for your disability claim, please please please go find one. Those cases are taken on contingency, meaning you donāt pay up front, instead they are paid a portion of the back payments once you finally succeed. Disability denies almost everyone, and then a huge portion of appeals succeed. But you are way more likely to win if you have a lawyer. Your profile says you are in Alabama - you can contact their state bar referral service and they will send you the name of an attorney close to you that handles those cases: https://www.alabar.org/lrs-form
You mentioned that a doctor said that people with TN canāt wear contacts - I was surprised, because I wear contacts without a problem. Thank goodness, because glasses make me motion sick. I wear soft lenses, so maybe if you need hard lenses it is a problem? Even if you have a trigger point around your eyes (which it sounds like you do), the contacts donāt cause any sensation at all, so I donāt think theyād be a trigger. In any case, it might be at least worth trying them, if they will help you see better. The eye doctor will give you a trial pair to wear for a bit before you buy a box of lenses, so you wonāt have wasted the money if it turns out that they do cause problems.
Anyway, we - the people on this forum - are here for you. Please keep us updated, even (especially!) when youāre in a bad place. When you canāt have hope for feeling better, please post about it, or tell your horse about it, or do whatever it takes to hang on a bit longer. Research is being done to find the genetic components of this, to find better treatment. This isnāt just vague āresearchā that we all hope is being done to solve problems - I spit in a tube to add my DNA to this research, and my surgeon just got back from meeting with other doctors in Florida about this research. He says theyāre close to finding the genes. Heās determined to find the answer. Please hang in there.
-Bev
David P
If you would like to email me just add @Yahoo to my username. I donāt mind getting
Emails I never had friends that I could email before. My email is full of junk mail
So Iāll make sure I watch for your email. I will be praying that your surgery goes
Well and that it takes all your pain away.
Look forward to hearing from you
Kendra K
Kendra,
I sent you an email. Hopefully it went through.
I agree 100% with what BevOregon told you. I also agree when she said talk to your horse. I talk to my dog Gracie and itās incredible how much empathy animals have. Hang in there they are doing research. Hopefully they can cure this disease.
Dave
Hi Bev
Thanks for the encouragement. I did have a lawyer but I chose the wrong one. I lost 2 years of back pay because of him. So I am going to find a new one. We have one dawn here that a lot of people said I should go to so I am going to check her out.
Surprisingly about the contacts it was the eye doc who told me about it. He was the first doctor I didnāt have to explain about my condition.
Thanks again
My name is Abbie Cunha I woke up one morning and 2004 and have a picking paint at the left side of my nose on the left side of my face it didnāt start out bad but it was consistent then it moved to the roof of my mouth on the left side also I went through MRIs at the hospital because the migraines that came on were Suicidal I went to the hospital probably twice a week and at the time had no hospitalization so one day they hospitalize me and Iām leaving they put me on pain management I was on 2400 mg of Neurontin 20 mg of OxyContin once in the morning and once at night up until 2008 when it went to sleep My neurologist Martin Lesser is located in phil Smithās neurological institute in Fort Lauderdale Florida he was the first doctor that believed me because most of them thought I was pretending or that it was in my head and they treated me like a piece a dog I had just turned 50 my life was going good happy working out every day loving New England then my husband took a job in florida Thatās how I located Dr. Martin Lesser he sent me up to see Dr. Friedman in Gainesville who was director of the trigeminal nerve department and he told me that is not what I have I have what is called a typical facial pain and not to let anybody touch my face because they donāt know what nerve it is he recommended pain management so my neurologist chose to treat me the monster in my face went to sleep in 2008 then resurfaced After I had a deep gum cleaning but this time it was more involved the left top of my head the left side of my head and my left eye bone crushing pain in my nose and pulling pain in my mouth and I too would get burning sensations in my tongue I was then put on Lyrica trokendi and Pamelor and Norco when this pain comes on and itās off the scale nothing I take helps it so this pain road for a year in 2017 I was pain-free in 2018 it came back in June same locations same unlivable Pain The only difference in my pain regimen is Iām no longer allowed on OxyContin but only on Norco they say I will have to live with this the rest of my life I have a tooth that needs pulled on the left side of my face and Iām too scared to go to the Dennis to do it because I donāt know if it will make matters worse itās like a nightmare youāre living in waking up from it would be a miracle people who never Live with facial pain doesnāt understand when somebody tells them I wish I could die how can I go on living like this I pray to God constantly I am 66 years old and married and I ask God to give me a good couple more years just been with my husband pain-free but I have a brother-in-law dying from angiosarcoma So I pray for him and I hope others pray for me cyber night and gamma knife doesnāt work on a typical facial pain because they have to know the exact nerve or he can really mess your face up the anticonvulsive medicine Iām on has put 10 pounds on me that I cannot get off and I watch my carbs and I eat no candy or cakes or pies I pray to God for the people who suffer with facial pain that it will leave your body and bring sunshine back through the cracks in your walls because everything has cracks thatās how the light gets in I would love to see that light something positive the only good thing I have to say about this monster in my face is that during the day There are hours where I am pain-free but I know itās a matter of time before it strikes again it seems like the months of March through June become the worst and the pain elevates and then after June starts dying down some but is always there but livable if anybody needs to reach out and talk to me I would be happy to reciprocate Bless each and everyone of you Abbie
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I used the salon pas that was mentioned by Azurella above and they do work very well. At first you think they are not strong enough but leave it on and you will see.
I get mine from amazon and I use the smaller patches and cut them up. Donāt get the large one for back pain. I got a MVD in February 2021 for type 1 after 14 horrible months.
It was the best thing for I ever did. But I still have atypical TN 2 which surgery doesnāt work on. I got the information about salon Pas from Azurella who is very knowledgeable about TN. I also use Capzasin ( hot pepper cream ) which you can buy at Walmart. It works very well but keep your finger out of your eyes at all time or it will burn. I am off gabapentin which never agreed with my body. I have had type 2 for 8 years and have gotten helpful tips from this website. I canāt take antiseizure medications.
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Hi Cowgirl,
Has your neurologist considered any of the Trigeminal Autonomic Cephalalgias? Some of your symptoms are similar to mine and I have SUNCT, Hemicrania Continua, chronic migraines and TN (but I think itās to do with the SUNCT).
You mentioned lidocaine helped and the first line of defence for SUNCT is lidocaine infusions, so maybe it should be under consideration for you?
Good luck in your battle, I hope you do better than me 