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I am in so much pain right now. I don't know what to do. I slept 2 hours on Sunday night night, 10 min the night before and nothing last night. After seeing the doctor today I got about 3 hours of sleep broken up by me being forced awake by excruciating pain. I am so tired and I have a toddler to care for. I am too young for this. I'm only 26. I shouldn't have this. I was only diagnosed about a 2 weeks ago and I don't know how I'm supposed to live like this. I have t3's for when it gets unbearable but they stopped working so today I was given percs but they scare me (and when I did take them they don't work. I'm fine until I lay down though) and I am on gabapentin for general use (was 200mg 3 times a day, now 300mg 2 times a day) but nothing's working. I'm waiting on a neurologist appointment and won't see him until March 14th (better than the June 6th date I was originally given) I'm so tired, I'm in so much pain. and yes, it's been 2 weeks of straight pain. The gabapentin has lessened it but every time I lay down to sleep it comes back full force. This is a million times worse than giving birth (and I didn't have any drugs for that).
Tonight: I've taken 2 percs, my 3 bed time gabapentins and a sleepingpill/plain killer (I can't remember the name) but still..the second I lay down I cry out in pain. I just can't sleep. I didn't sleep at all last night. I have a toddler to care for. HELP! I need sleep.
And how am I supposed to live my whole life like this? my grandma had it but it only flared up once every 6 years or so and only for 1 day. My aunt has it and had a 2 week spell then nothing for 10 years but she said it was never as bad as this for her. I don't know how I'm supposed to live the next 60 years like this. :(
Oh and for some reason cigarettes help temporarily. I had just quit too. Then this was so bad one night and I was so scared and frustrated I broke down and had one and the pain went away for about 10 min.
I do have to giggle a bit about when I told the doctor today. He didn't know what to tell me. He just said "as a doctor I can't condone smoking but as a human being I can't say not to if it's helping with your pain". It made me laugh a tad.
N, Im so sorry for the amount of pain your in, I do hope when you see the Neuro he will be able to come up with some meds to help. There are others on here who suffer as you do and I am sure they will come on later with suggestions. Is it possible you could try to sleep sitting up? Do you have a chair which you could use to sleep on?
I have seen it mentioned on here before that laying down can be a trigger for some, due to compression on the nerve
I am praying to get some relief soon as your Grandma and Aunt did.
I don't have a chair but I have a couch where I can prop myself up but my head still ends up angled and it still hurts. I was at my parents' tonight for a bday dinner for someone and I used their recliner and could've slept for hours on it. I was able to get so comfy.
call doctor for a script for lidocaine cream or patches - took the edge off for me - if you have TN1, lightning strikes vs constant burning pain - trileptal worked for me within 48 hrs
keep coming here for support
You may already know this but just in case: 600mg is still a low dose. THERE IS HOPE, if 600mg is helping a little then a workable dose may help a lot, no promises though. I have been up to 2700mg with the help of my Dr and I did taper up slowly. That dose proved massively helpful to me.
You sound in such an awful way, my heart grieves for you and what you are going through. I sincerely hope for an improvement for you soon. My best advice is ring your GP and ask about increasing your dosage with help from a medical professional. You are in my thoughts.
I totally agree with sleeping in the recliner as that is what I do nightly. I also notice that when I do lay in the bed for a little while I wake with swelling on the right side as well. Weird. I don't know if there is for sure a a connection with laying down but I am definitely more comfortable sleeping in a chair as far as not being in pain. Best wishes to you. Min
I understand. I went to the ER and they gave me Carbamazepine or Tegretol. That is one of the first meds given. If that works, it is most likely Trigeminal Neuralgia. Can you go to ER or an urgent care? Tell them you'd like to try this med. I take 1,200 right now. That is the said, most, they want you to take. It isn't the drug of choice to stay on, but it might get rid of the horrible attacks. When I went to ER, he put me on 200mg. Duh. does nothing when you are BAD. My neurologist that had 150 TN patients put me on the 4 - 6 daily. (each tab is 200mg) I would really do this as you can't live another 2 wks with this pain. I don't even call it pain. It is more like HELL. Have you had a brain MRI yet? I'm sure your Neurologist will do all these things, but we have all learned that Drs. are just people too and noone knows TN unless they have had it. Like every disease, right. Sending you a big hug. I'll be thinking of you.
Cindy, We discussed tegretol but decided on the gabapentin because my husband and I have been trying to have a baby and I might be pregnant. Just waiting to find out now. Gaba is safe during pregnancy, tegretol is not.
I have not had a brain MRI and it's something I'll have to discuss with the neuro doc. I am normally all about natural things. I haven't even taken a med in 10 years (including during bladder infections, appendicitis, pink eye, ear infections, tonsilitis etc. All beaten naturally). So the MRI thing worries me. If it's not going to make any difference in treatment then I see no need for it. I'm already not happy being on the gaba or having percs in my house. But desperate times call for desperate measures. I have found someone who had TN and actually cured herself with diet changes so I'm speaking to her about how I can give that a try.
Thanks for the support guys :D
2 things -- First as far as all natural --(have you read the book Striking Back?) ( it has many natural and medical possibilities and is our "Go To" book here ) I and many others have found temporary relief from a reiki practitioner. I did not know what it was, I thought I was getting a free massage where I volunteer. And WOW
I did not have to wear a lidocaine patch for 3 weeks! It's energy healing and even though I am very open to these things - I was blown away enough to go get another session before my MVD. I brought her to our local support group so others can see if it works for them. Some find releif through acupuncture.
As far as MRI compression....Most Dr.s do an MRI to rule out MS.
Then neurosurgeons do MRI to see compression. My Dr. is top in the field and does not do MRI for compression -- patient history and descriptions are his "Bible" for this without time and $$ on MRI. So MRI for compression is NOT mandantory unless maybe for insurance. Keep Posting!
Oh and to add: If we aren't pregnant this month we're going to give it a break for a little while until I get this all under control.
Thanks KC. That's what I've been reading. I spoke to my aunt (who has TN and has been a nurse for decades) and told me that TN is not the first sign of MS. Most MS patients who have TN have known of their MS for a long time so I'm not worried. I have no other signs of MS. And the compression...well maybe in the future I'll agree to it but for now I think I'll skip. Let's try some of the mild treatments first and if we have to get into something extreme that requires knowing more about the compression then I'll reconsider it.
Price isn't an issue. I'm in Canada so it's all free anyways.
Just for the record, I do not eat meat. Use to do only tofu and veggies and fresh foods. Unfortunately, I have most of my insides remove and can't eat like that anymore. So, I get what you are saying about trying to go natural. I too, tried accupuncture and that set it off in a whirlwind. So, the gal that wouldn't even take an aspiring, still don't drink and still don't smoke, LOL.....has now had to take horrible medications. Like someone mentioned, the MRI would at least rule out MS and any other abnormalities. I hope you find what works for you. It's a personal journey for each of us.
nwaring said:
Cindy, We discussed tegretol but decided on the gabapentin because my husband and I have been trying to have a baby and I might be pregnant. Just waiting to find out now. Gaba is safe during pregnancy, tegretol is not.
I have not had a brain MRI and it's something I'll have to discuss with the neuro doc. I am normally all about natural things. I haven't even taken a med in 10 years (including during bladder infections, appendicitis, pink eye, ear infections, tonsilitis etc. All beaten naturally). So the MRI thing worries me. If it's not going to make any difference in treatment then I see no need for it. I'm already not happy being on the gaba or having percs in my house. But desperate times call for desperate measures. I have found someone who had TN and actually cured herself with diet changes so I'm speaking to her about how I can give that a try.
Thanks for the support guys :D
I'm so sorry that you are in such a terrible state! The beginning of this entire process is the WORST! I really feel like everyone's road to recovery is different but you really need to be your own advocate and learn about EVERYTHING that is out there. I feel your pain about being so young. My ATN also started when I was 26 — I'm now 28. My husband and I were also trying to get pregnant until this last cycle of pain started (last May) so we had to stop because I started on Tegretol. Tegretol totally cut the pain down a lot, but it has made me a loopy, tired mess. I recently added in Lyrica and that helped stop some intense burning pain. For the really really bad spells, I take Lorotab 10 and those totally fix the problem (most of the time). Things that help me when I'm in the thick of it — ice packs (I think they just make my nerves feel something else), mediation and acupuncture. Sometimes I will also just get up and force myself to take a bath, play some music and dance around ... do something else to just feel something different. It totally sounds silly but it helps me.
As far as the MRI and neurologist appt — I had that same problem with trying to get in to see one, was going to take forever. I did a bunch of research and called and called and finally got in to see someone within a few days of my most recent attack. Also, you've totally got to get an MRI. They can rule our MS and also see if there is a compression between your trigeminal nerve and a blood vessel (if that is the case you are a good candiate for MVD surgery). ALSO, you must go purchase the book "Striking Back" (as one of the other folks here mentioned). It's the Bible for TN. It will empower you with the knowledge you need to figure out what works for you, what your next steps are, etc.
I am also very in to natural options, eating really well, exercise, etc. But it really got to a point with my ATN that I just had to bite the bullet and take meds for awhile. I'm in the process of weaning of of Tegretol and Lyrica. OH, I also highly suggest taking an antidperessant during this time. I tried for over 6 mo. to deal with the depression and anxiety that goes hand in hand with TN and finally I just said enough is enough and started taking 10mg of Celexa (that is the lowest dose) and once it kicked in, I was like, you've got to be kidding me, should have started this a LONG time ago. It has really helped me to mentally and emotionally manage and helped me on my road to recovery (I have MVD surgery on Jan. 25th).
Take care of yourself, Jessica
Ya. I do eat meat (partially love it too much, partially won't touch tofu or anything soy. Too dangerous lol) but just eat as healthy as we possibly can. I've lost 48lbs in the last year so I've been kicking ass at it. And then this happens. So frusterating.
Cindy said:
Just for the record, I do not eat meat. Use to do only tofu and veggies and fresh foods. Unfortunately, I have most of my insides remove and can't eat like that anymore. So, I get what you are saying about trying to go natural. I too, tried accupuncture and that set it off in a whirlwind. So, the gal that wouldn't even take an aspiring, still don't drink and still don't smoke, LOL.....has now had to take horrible medications. Like someone mentioned, the MRI would at least rule out MS and any other abnormalities. I hope you find what works for you. It's a personal journey for each of us.
Hey thanks. Glad to know I'm not the only youngin' here. lol
As for the MRI, I know I don't have MS. Like I said, I've spoken to my aunt who's a medical professional and has TN and she has assured me that TN is never the first symptom of MS and I don't have any others. I also will not be getting any surgeries until I've tried every single other option out there. At that point of discussing surgery I will then reconsider an MRI.
I will look up that book right now actually.
As for the antidepressants, our family has a bad history of those causing a ton of problems so it's another thing I'd like to avoid as long as possible. But I have warned hubby that dealing with something like this could cause me to slip into it, and even the meds I'm on can cause depression so he knows what to look for in me to say "no. it's time for those nikki". Hopefully it never comes to that but if it does I'll accept it.
The irony of me, the person who NEVER takes even so much as a tylenol, having to be drugged up so much is too much for me. It does make me laugh slightly. Like of all people of course it's me! lol
JessicaG said:
I'm so sorry that you are in such a terrible state! The beginning of this entire process is the WORST! I really feel like everyone's road to recovery is different but you really need to be your own advocate and learn about EVERYTHING that is out there. I feel your pain about being so young. My ATN also started when I was 26 — I'm now 28. My husband and I were also trying to get pregnant until this last cycle of pain started (last May) so we had to stop because I started on Tegretol. Tegretol totally cut the pain down a lot, but it has made me a loopy, tired mess. I recently added in Lyrica and that helped stop some intense burning pain. For the really really bad spells, I take Lorotab 10 and those totally fix the problem (most of the time). Things that help me when I'm in the thick of it — ice packs (I think they just make my nerves feel something else), mediation and acupuncture. Sometimes I will also just get up and force myself to take a bath, play some music and dance around ... do something else to just feel something different. It totally sounds silly but it helps me.
As far as the MRI and neurologist appt — I had that same problem with trying to get in to see one, was going to take forever. I did a bunch of research and called and called and finally got in to see someone within a few days of my most recent attack. Also, you've totally got to get an MRI. They can rule our MS and also see if there is a compression between your trigeminal nerve and a blood vessel (if that is the case you are a good candiate for MVD surgery). ALSO, you must go purchase the book "Striking Back" (as one of the other folks here mentioned). It's the Bible for TN. It will empower you with the knowledge you need to figure out what works for you, what your next steps are, etc.
I am also very in to natural options, eating really well, exercise, etc. But it really got to a point with my ATN that I just had to bite the bullet and take meds for awhile. I'm in the process of weaning of of Tegretol and Lyrica. OH, I also highly suggest taking an antidperessant during this time. I tried for over 6 mo. to deal with the depression and anxiety that goes hand in hand with TN and finally I just said enough is enough and started taking 10mg of Celexa (that is the lowest dose) and once it kicked in, I was like, you've got to be kidding me, should have started this a LONG time ago. It has really helped me to mentally and emotionally manage and helped me on my road to recovery (I have MVD surgery on Jan. 25th).
Take care of yourself, Jessica
I have no answers for you but I do sympathize with you and wish there was something I could do to take your pain away. I know how it feels.
Bless you darling .. that is so very frustrating. If you still are not getting relief I would call your family doctor and explain the situation,or call the neurologist, some of them will put you on a list and if they have a cancellation they will sneak you in there earlier , sounds like you need that. I also sleep in a recliner , as I have seen many other say and often keep my neck propped with a special pillow to keep my head straight and not touch my face to anything , I have Left sided Type I and II pain . In the beginning I tried anything that anyone suggested . It does get overwhelming . Reach out to your family and others for help, I had to and even though I was afraid to admit I needed help , my sisters have been super, hope it gets better for you soon and most of all sweet dreams blessings to you