Almost went to ER & TN does happen at night

[chasingmytoddlers2]

I had a very bad night. The teeth are really hurting on my first TN side.
I did buy anbesol liquid. It did take the sting out of it for a bit. But the act of applying it made for worse pain. I soaked a q-tip in the liquid and then touched that inside my gums and along those problem back molars. When I say touched I mean pressed it in....I was numb! It actaully was a bit too much pressure but I couldn't feel it.
I had so much constant pain last night that we almost woke the kids and headed to the ER. The part that kept me home was that this was so similar to the very 1st attack of TN (before the diagnosis). The pain went in a curcuit around one side of my face for about 10 min and then stops completely * except for the tooth pain. It stops and then nothing except the feeling of being bruised and feeling swollen after it ends. The other thing was just not wanting to go there and deal w/ explaining everything and having to be admitted b/c I can't take teg and would have to have the other option for the dilantin drip. (phenytoin).
Is there any one posting on here that take Dilantin? I upped my meds yesterday and was wondering about upping it again. How long do you have to wait? My dr. said I can play w/ any where between 100mg-300mg a day. I just don't know how quick to raise it and now that I am desperate I am thinking about taking the 2 this morning and another one this afternoon. Even though it may give me insomnia at least HOPEFULLY I would get more relief by splitting the dose and not want to go to the ER.
Please write or PM me. I am going beserk here.
Stephanie

[SwTPeA]

I wish I could help more...

I stay home from the ER now because of the horrible treatment I have got...They treat me like I'm seeking drugs...AND dont believe me that I have TGN and it hurts so bad I want to die...

Does vicodin ever help take the edge off of your constant pain? Or any other narcotic?

[bilateral]

Hi Stephanie,

I don't take Dilantin, but wondered if you have a copy of Striking Back? There is information there about it.
May be you need another drug adding to dilantin.

If you did go to ER, the best thing would be to take somebody with you who can speak assertively on your behalf, so that you won't need to try to do that while in so much pain.

But I undertand that you don't really want to go to ER and there are other people on the forum who have had bad or unhelpful experiences when going to ER.

May be you ( or somebody on your behalf) could phone a pharmacist and ask how quickly you can up the meds.
Another option would be to contact the TNA?

Sorry that I am not more helpful than this, but I hope that you will feel better soon!

Take care,

Anne

[saraiderin]

You are in my heart and prayers.

Sarah

[chasingmytoddlers2]

We called my neuro and got my Dr. on call to call me back. My hubby told him about the last 2 days and nights. We were talking about going to the ER again and then decided against it b/c by the time we get there the pain will have stopped and I'd be just having the tooth pain by the time they saw me.
My dr. told us that the only thing the ER would do would be to give me Diladid (sp) thru and inj. He told me to keep taking the percocet. I am taking 5/325mg every 4 hours but can take 2 of those to try to beat this down a bit.
He also told me to take 300 mg Dilantin for the next 2-3 days to get my level up and then go back down to 200 mg of Dilantin which is 100 more than what I normally take.
I am so exhausted and frustrated. My hubby is scared. This is so different than what my normal TN experiences are. This is constant pain. It is also on both sides at the same time....no matter what they say. It Is!
We still think the ER sounds good during the worst of the episodes but when they pass in 5-10 min we know we would not have made it there for them to see the attack.
Thanks to all of you who have pm'd me and posted. I know you all are understanding and so kind. I really appreciate it.
We are going to try to stay home, just work thru the longer pain attacks and make it till morning when I can take 300 mg.
Why does it change like this? I have never had constant pain like this. It plays w/ my mind when my teeth hurt so much that if feels like it must be dental but my heart knows it is TN. I can see why people insist on having teeth removed. How heartbreaking.
Thanks again for your support,
Stephanie

[1Lily]

Stephanie,
I am so sorry that you are experiencing this - I have had the same, and it is almost enough to push me over the edge. Ask your doctor for permission and instructions to up the percocet when you are flaring so badly.
I have had a pretty consistent record of refills (ie, not using them up too quickly), so my pain doctor prescribed oxycodone without the tylenol in it, and told me how to increase it in case of a flare. I am mostly able to handle the bad ones at home now, which makes me, my pain doc, and my HMO happier.
I sure hope you get this under control - no one should suffer like that.
gentle hugs,
Lily

[bilateral]

Hi Stephanie,

I do so hope that today will be a better day for you.

Take care,

Anne

[Mrs Wiggens]

Stephanie, Believe it or not, I have been right where you are. I know it is not a nice place to be.Trying to adjust meds, going to E.R. (in which they gave me a shot of Demoral that I went home and puked up after the room stopped spinning.)
Little did I know that eventually the solution would lead me down a very dark road and come at a high price. I had a severe case of t.n. ending up at Mayo clinic in Rochester Minn. The price I would pay was the severing of the trigeminal nerve after having two failed Microvascular decompressions.The result from that was numbness in the entire left side of my face but still racked with pain which is one of the dreaded complications of having an M.V.D. It has a name.
Anesthesia Dolorosa .
I know you are looking for answers and want someone to tell you just what to do. I know how you are feeling. It's one of those things that seems like it will never end, but it will. Don't give up this fight for your life.
I'm here. Truely a believer,
Mrs Wiggens

[EE03]

Stephanie,

Did you stop nursing? (I hope I'm remembering correctly here) The best way to control the pain associated with TN is to find a med or combo of meds that works and to maintain a steady dose in your system. Is Dilantin working for you and are you taking a regular dose of it?

Ellena

[chasingmytoddlers2]

Today I woke at 6am to the same constant pain, just moved up a bit. It is more cheek and nose area. I took the 300 mg right away. I used warm water to get it down and broke a muffin apart into little pieces to get something in my tummy. I was still having the severe tooth pain. Couldn't chew it but it did dissolve w/ warm water.
I took more Percocet at 9 am. and shortly after that was able to eat a waffle. Being able to touch my teeth together on the left side is a great feeling. Over the last 2 nights I have been thinking about going to the dentist just to make sure there is nothing wrong w/ that back molar. I do remember getting a inj. of novacaine that numbed me for 3 hours. I would love to have that break from the pain right now. Now later in the day as the dilantin kicks in I can touch my teeth together and even tap them. So I am starting to believe that it really is just the TN. But still fantasize about the novacaine injection and the relief it gave me. Can I buy that stuff somewhere? Just kidding.
One thing I have to find out more about is some suckers I have read about. Anyone have info on that. I was thinking that may be something to use just when I am curled up in the fetal position. Not for just the normal jabs and jolts.
I now know I was very lucky to have just mild TN at the beginning. It was controlled by 100 mg of dilantin until a few days ago. The breakthrough pain I got during the last few months was nothing compared to the last 72 hours.
Still nursing my daughter but honestly I have changed my mind on that due to the new pain. For those that know how sensitive this has been for me you will understand that stopping nursing to relieve my pain has not been an option for me...until now! I am going to wean her right after my 35th birthday. End of May. That is my goal and once that happens I can switch to a newer drug or maybe even an add to the dilantin like some of you have mentioned.
So thank you all for your support and positive words.
It means a lot to me.
Stephanie

[river]

I am so sorry you are experiencing so much pain. I am lucky as my flareups only last a few days at a time, but they are still horrible. And mine continue 24/7, so during a flareup the pain wakes me up like it's doing to you.

I also use Anbesol for the horrible tooth pain. Another thing that helps sometimes is the Cloraseptic throat lozenges. They are designed to numb a sore throat but if I let one dissolve on the side where the TN is, it sometimes helps. I also use Aspercream or Myoflex topical pain relievers on the cheek area. It hurts like crazy to rub it on, but sometimes I can get a half hour of relief from it which enough to catch a little sleep or to eat something.

I hope you feel better soon.

[crysopac]

Ok so I cant be a ton of help but I can be some. Racheal's pain was constant when it started. All night every night. Which is part of the reason it took so long to diagnose her. She also cant take TEG and is on dilantin. Actually after reading about your last couple of days she is like a mini you. The ER stinks where she is concerned so unless I have to we dont go. She has had all her bottom molar removed and some of her top. Her pain has changed some since her diagnoses several years ago. As for uping the meds they have to make a jump at first and then go down to a maintance dose. The herbal concoction seems to be working great. On the 30th we have labs again and then another uping of the meds. Feel free to pm me for more information on dilantin. I dont know how much help I will be since she is so much younger than you but I would love to help. We are praying for your relief!

Crystalina

[chasingmytoddlers2]

Thanks for the note. I would love to hear about the pain relief you are giving Rachael. Please tell me all about it. Since we have similar teeth issues maybe it'll help me too & others also.
The raise in the meds is making me very tipsy today. This is the 2nd day of the raised dose. Also the Percocet is hitting me hard. It does take the teeth pain away but the bad part for me is along w/ the relief I can't keep my eyes open.
All the kids toys and screams are very annoying today. I have little patience and I am very sensitive too. I have already called my hubby crying once. Then he called at his lunch time to check in on me. We think it is the percocet that is making me feel jumpy and dopey and the upped Dilantin making me feel tipsy and sick to my tummy. But, I can touch my teeth together! That is great.
My whole face itches, mostly on the left side, but a bit on the right. Feels like a burn but it is not a sunburn. Any ideas which med is doing that?
I have not taken perc. since last Oct. Raising the dilantin from 100mg to 300 mg, could that do it?
River, thanks for the info about the throat loz. That sounds like it could work. I did use their throat spray thinking it was bad tooth when this all started. It felt good but didn't get right to the problem. The loz. will be worth a try.
Mrs. Wiggens, I would love a shot of toradol (sp). I got that at the ER in Oct. when they first diagnosed me. At least a few hours of relief & sleep would come of it. But we live 30 min. away from an ER. By the time we got there it would probably be over. My hubby said an ambulance wouldn't even have that stuff on board. Maybe morphine but I don't know if that works on TN. The pain I have had the last few days has made me think of the surgery options for the first time. Thanks for your feedback on your surgery(s) and for mentioning Anesthesia Dolorosa. That scares me so much. It shocks me that so much pain can make me even think about MVD. I never would have until now.
Lily,
Can you tell me about oxycodone without the tylenol in it. What is the reason you were give that. I am wondering if the reason I am given percocet is b/c it is safe to take w/ nursing.
Trust me, I am right on the edge of weaning her! I just don't want to regret doing it b/c I will feel like I did it for just me. I know it is not selfish because I am in such pain but it still feels like it.

Description: The large piece of equipment they use to drill a hole in the side of a mountain to make a tunnel. I feel like that is working it's way thru my cheek, jaw and nose area.

[EE03]

I'm sending all the positive vibes I can manage your way that you'll get some relief soon. I know the boring pain well and its enough to drive you crazy all by itself. Have tried Capsacian? You might want to give it a shot.

Hang in there, ellena

[1Lily]

Hi Stephanie,
Here's my two cents, and just my two cents, not to be confused with a doctor's advice :-)
The percocet can make make you sleepy, jumpy and emotional. It has to me, anyway. When I have upped my gabapentin, I have experienced a similar 'burning' in the areas that are most effected by my neuropathies, similar to what you describe with the increase in dilantin. So if dilantin is an anti-seizure med, than that sounds about right.
I think that the lolipops that you mention are morphine lolipops.
I think that oxycodone IS percocet minus the tylenol, but I am not certain. I do know that oxycodone is 'Oxycontin'. The doc changed me from percocet to oxy ("since it works for me"), so I am pretty certain that they are in the same family. Only the pharmacist can tell you all of this for certain (or WebMD).
I am not a druggie, I just learned this all from fellow sufferers in my chronic pain class :-[
I would think that they wouldn't want you to up your medication like I do, if you are breastfeeding. I was so innattentive when I answered you previously, I didn't catch that you are still doing this. SORRY :-/
I am at the point as well, that I would trade a hole cut in my head, and areas of permanent numbness, for pain relief.
I really, really, really hope that this lets up for you!!!
Lily

[crysopac]

I love to be able to help. :) I sometimes feel like I have no useful information since she is so young but then again she is still having the pain regardless of age. Ok I am going to help as best I can and maybe keep you breast feeding.

(super mom I am)

Ok on to the help. As for meds while breast feeding I had to take a ton. some of them not so safe for breastfeeding mothers. I talk to the doctors, midwifes, other moms, just about everyone and they told me that with most meds you can still nurse you just have to express some of the milk before the baby starts eating. I do not know if this works with dilantin though. But it is worth a shot to ask. Now then I was also told but never tried or followed up on that you can sterilize your breastmilk so that you can still give your little one the breastmilk but in a bottle. I will tell you this my fellow mom. Your dd who is nursing is helping keep your pain down! The act of nursing releases chemicals that make you feel good and helps control pain. Weird I know. Especially if you have a little one that sucks the life out of you. LOL

Now then as for upping dilantin we are not experts at this yet. And since her little body likes to store the meds instead of using them we have to be very very careful. What I do know is probably the same thing everyone here does. The anti seziure meds work on a maintance level system. Meaning once you get to the dose that works for you, you must maintain that dose. So most doctors give you a larger dose than you need at first to get the meds in you system quicker and then gives you a maintance dose that keeps the level of your best at the same place. When we do this with Racheal she is always sick, tipsy, cant walk straight, sort of looks like a mini drunk! After a couple of days though she stablizes out and the world is good again. The only time this did not work was with TEG. Then she ended up in a medicine induced coma. That was no fun at all. At that time she was also taking vicodin to help control the pain. Some pain meds increase the effects of the anti seziure meds. So you must be careful. I dont know about percocet though.

As for the concoction that I created with all my wonderful wisdom(hey I am aloud to stroke my own ego ok :) ) I went online searching for something that would help rae get thru. I talked to the people on here about tiger balm. I asked doctors of herbal meds. This is what I found. And it works wonders for miss Racheal.

Her concoction is this
4 drops of peppermint
2 drops of Lavender
1 drop of Clove
30ml of olive oil

This recipe is the strength perfect for her. I am sure that I could increase for you if you like. I tried some on the back of my hand and it creates a strange sinsation. It itches a couple of seconds after applying but that only lasts for about half a minute or so. Then your can feel your arm. your not numb or anything but you cant feel the endings of your nerves. This is the best way to explain it. It is a strange experience. I put two drops on the backs of her heels and then if she needs it during the day I put one drop on a cotton ball and but a small dab at the back of her ear. This has taken care of all her break thru pain she has been having.

It is ok to cry. It is ok to call your hubby at work and blame it all on him. He knows or should know that you dont mean it and just need to vent. It is ok to let the kids run wild for a few while your calm down. (as long as they arent doing something that will hurt them) BTW how old are your kids? Mine range from 12 to 4. Please pm me if you need anything.

Crystalina

p.s. as for the jumpy it could be the percocet but it could be the dilantin. Rae is really jumpy and emotional on that stuff.

[chasingmytoddlers2]

Thank you both for you great help.
Crystalina,
I have the oils you mentioned to make the special rub. I will make that up in a bit. I make Zoey's diper wipes using lavender and Apricot Oil. So calming for me. I have the peppermint for when we have colds and the clove b/c it just smells so great. Reminds me of the holidays. So I will try it out and apply it to my heels. I often put lav. oil on my wrists to smell when I need a wiff of peace. So this sounds promising to me! Just needed all your footwork to find out what works. Thanks.
I found the Poison Control center so helpful when I was diagnosed w/ TN. I was given options of different meds and called pharmacists, dr. offices (peds and ob) and also called the breastfeeding center at our local hospital. By far the Poison Control Center was the most helpful in what I could and could not take while nursing. I can take Dilantin and Teg (allergic to Teg.) and I can take percocet.
I REALLY appreciate your kind comment about nursing and how that is a helpful thing for me. I can think of nothing worse than trying to wean her when this all started! There would have been so much more stress in the home.
Luckily this happened when she was over a year old. Now she is over 2 and only nurses a couple times a day. She eats people food like a champ so I have no concerns for her health. Also my meds have never given her a reaction of any kind. I have to trust that b/c they give Dilantin to children it is safe for her to get the small amount that may pass thru the breastmilk.
Plus until this last spell I normally only took 100-200mg a day. Because of the creme I have 100mg was usually enough to keep the big ones away.
Thanks for the time you took to write it all our for me. I really appreciate it a lot. Stephanie


Lily,
I just asked my drs assistant about the lolipops. I have been told about them before. I will let you know what he agrees too.
Please shush girl....I have never thought of anyone on here as a druggie. In fact it sickens me to think that someone would think that about me. That is one of the things that keeps me from going to the ER. Goodness, I don't even like to take tylenol. But here I am asking for help to find some relief.
Thanks for telling me what has helped you out.

Right now I have beer bread in the oven. It is super easy & such a treat to smell it as it cooks and so wonderful I have to eat it burning hot right out of the oven!
Whole Wheat Beer Bread
3 cups flour ( I use 1/2 reg. & 1/2 wheat)
1 1/2 tsp baking powder
1/3 c. brown sugar
1 bottle beer 12 oz.(any kind you have in the fridge, can be ale or the cheap stuff, we have MGD, a very light beer).

That is it, just dump it all in a bowl, mix it up. I don't even use a blender, just a spoon.
Poor into a sprayed loaf pan and drizzle some melted butter over the top.
Bake at 350 degrees for 40-60 min. Sorry, can't say specifically. I have a cake tester I stick in and it is done when it comes out clean.

This is pure comfort food and I need some right now.
Enjoy all,
Stephanie

[1Lily]

Stephanie,
Thanks for the recipe!!! I thought all bread needed yeast, which has always stopped me from baking it. Now I am going to have to bake soem sometime soon.
I had another comfort food the other day - try it if you haven't before. Bake up some yummy cornbread, then slice and put butter on, then drizzle with lots of pancake syrup. Pure food for the soul.
Take care, and take it easy...
Lily

[crysopac]

Lily,

Quick breads dont need yeast. I make both types of bread. But time is not something I have alot of. so usually they get quick breads. I have a great recipes for peanut butter bread. Great for a quick protein pick me up.

Steph,

No problem. i am here to help. I am glad I was able to. The thing I created my be weak for you. the original called for 10 drops of peppermint and eucalyptus and 5 drops of clove, and 60ml of olive oil. But we cant use eucalyptus and the rest seemed a bit strong for such a little one. Hope you find relief soon.

Crystalina

[chasingmytoddlers2]

I think the yeast needed for the beer bread comes from the yeast in the beer. For Christmas presents I am going to get cute jars, put the dry ingred. in them and give each away w/ a bottle of beer and a loaf of the bread. It is so easy. Tell me if you make it and how you like it.
I have seen a recipe for the cornbread w/ syrup. BUT never tried it. I will now! Thanks for sharing that w/ us.

My hubby is driving now to the airport. He is going to be gone till Sat. (3 nights) He is only 2 hours away by plane and he will come home asap if I called him and told him too. I have my mom coming over tomorrow for the day. We have had constant rain for the last 36 hours. When the sun is out it will help to have the kids running and screaming outside. Maybe even be able to get the kid pool out on Friday. Supposed to be in the 70's and 80's tomorrow till Sat. That will be nice. The kids always get pooped out when they run around like that. Then they sleep so well after a hot bath and a good dinner!
I have not heard back about the lolipops. But I have an neuro appt. w/ a new neuro on Monday at 2 pm. (same office as mine so my records are already there.) Just b/c I have little faith in them at this time I also have another neuro appt. on June 4th. This one is at a new place w/ a woman dr. So I can get a 2nd and 3rd opinion! That way if the one on Monday is a bomb I can look forward to the one on the 4th of June.
I am down to 200 mg today. We did the 300 mg for 3 days as my neuro suggested. Now I will try the 200 and see if it gives any relief.
Will keep you all posted.
Stephanie


Stephanie,
Thanks for the recipe!!! I thought all bread needed yeast, which has always stopped me from baking it. Now I am going to have to bake soem sometime soon.
I had another comfort food the other day - try it if you haven't before. Bake up some yummy cornbread, then slice and put butter on, then drizzle with lots of pancake syrup. Pure food for the soul.
Take care, and take it easy...
Lily

[1Lily]

Stephanie,
Great idea to book appointments with other doctors. I would love to hear what your doctors have to say, and what recommendations they make. I am still learning as well.
You can have some of our heat - it was in the low 80s today in the SF bay area, and it is supposed to jump a whopping 14 degrees in the next few days to the mid 90s. Crazy. I think our heat wave = perfect weather for ourt friends up north.
I'm glad to hear that the pain is subsiding. Keep us posted.
Lily

[allih]

Lordy ... you must be closer to the Bay. Inland it was in the 90's. Today it's supposed to hit over 100. :eek: Waaaay to hot to go out with this stupid condition or to cook. It is out for dinner tonight in a nice air conditioned restaurant.

I just hope this stays under control for a few days. I'm going up to Redding to see my Mom... It'll be even hotter up there.

Alli

[chasingmytoddlers2]

Lily & Alli,
100 sounds a bit too much for me! I am not a heat lover! If summer was 70 degrees all season I would be in heaven.

The only reason I want it warmer is because it has been raining the last few days, all day long. I want the kids outside running and screaming and not inside running and screaming.

My mom is coming today to help out. My hubby will be home Sat. night.

I am going to write a thank you to Crystalina for the essential oil recipe she gave us. I used it last night and it went very well.

Hope you are ok in the heat wave. Up here we have been waiting for any sign of summer. It's been a long winter and not much spring.
Thanks for the notes.
Stephanie

[baywatcher]

Just to cool you all off . . . . it was 22 here last night. Such heavy frost that it looked like snow on the ground. Ice on table tops, frozen birdbaths. My poor geranium! Nancy

[allih]

22??!! Isn't it supposed to be spring? Your poor garden! I hope it is handling a late spring well. I wish I could send just a bit of our heat to you. Mid 80's is my fav. Not to hot, not to cold. My poor daughter HATES the heat and is withering. My kittens love it though. They sit in the window and just bask in the heat.

They are soooooooooo cute!
Alli