Does anyone here know about a nasal spray to relieve TN pain?
My TN pain is almost entirely concentrated in my sinus cavities, and if my allergies kick up the pain is unbearable.
I've tried Cetacaine spray before, but all that did was trigger my allergies an make the TN worse.
I don't think I alone in my situation, maybe someone here can help...I really need it.
John
Hi John,
I have been trying to make a sinus and TN connection since December 10tth and have not had any positive response.
I also have TN mostly in my right maxillary sinus that spreads to jaw, ear, upper teeth and roof of mouth. I have swelling in gums upper right side around molars and swelling in roof of mouth right side. No headaches. Any simularities?
John, I went to dr. 6 years ago with minor TN symptoms and was not diagnosed with tn but sinus infection. I have been treating sinus since. My first "episode" was Dec 10th 2011. I was scheduled for surgery on my maxillary ostium on the 19th of december which was canceled due to tn. My MRI is clear! My sinus needs to be opened up. My ENT believes a vaccume in maxillary sinus cavity has developed. Now everything is on hold and I am trying to figure it all out. I want to hear your story. I currently take singular and nasonex up until this past thursday to see what my sinus will do. I am really interested.
I know nothing about the sinus spray.
However, my doctor did tell me that often times doctors misdiagnosis TN as sinus issues until it progresses. Are you the one that put the surgery on hold? I had a friend have a sinus surgery that has never fixed the issue and now she is worse off. I guess I would want more than believe, I would want more definitive proof.
As we all know, a MRI does not show anything sometimes... it merely rules out other issues.
Lisa, if you haven't had surgery be VERY carefull about blindly submitting your body to any doctor.
My TN was originally diagnosed as chronic sinusitis. I had one nasal endoscopy that seemed to work for a year or so then the pain returned. When I went back to the ENT she said my sinus cavities were so diseased I needed another endoscopy, shortly after the second endoscopy the neurologist diagnosed TN. I DO have sinus problems, but I should never have gotten the surgeries.
It sounds like you are struggling with money and paying for healthcare. If you can get your insurance worked out there are some excellent TN doctors at the University of Oregon. I met a host of TN docs at the conference on facial pain in Rochester, MN two summers ago, and the regional conference in Irvine, CA.
I've seen enough to know the science is evolving as we speak, the doctors are excellent but there is a limit to what they can do, especially for me because I have MS.
There is a group at the TNA association for people under 30 (unless your photo is a fake baby photo you look like you are under 30), all these sites are great for helping us enable ourselves to deal with TN. There is a lot of talk here about surgeries, not that I don't believe in surgeries but there is much more we can do before taking that route.
If you need to find a doc down that way I think I can help.
Take care,
John
Kimburlee,
Your symptoms sound very similar to mine. Have you had sinus problems before? If I were you I'd see one or two ENTs, but I'd also see a neurologist. The trick is getting an MRI that a doc can confirm the problems, my MRI shows sinus congestion as well as TN sources. Make sure that all the docs you visit are aware of TN symtoms, they are getting better at diagnosing TN but it is amazing how ignorant some healthcare providers are. Do NOT submit to sinus surgery until you are convinced of the source of your problem.
kimburlee said:
Hi John,
I have been trying to make a sinus and TN connection since December 10tth and have not had any positive response.
I also have TN mostly in my right maxillary sinus that spreads to jaw, ear, upper teeth and roof of mouth. I have swelling in gums upper right side around molars and swelling in roof of mouth right side. No headaches. Any simularities?
John -- Thanks! I was actually cautioning Kimburlee from the surgery, I don't need one myself.
BUT, I have struggled for YEARS with two things: migraines and sinusitis.... my doctor is now thinking this has all been an evolution to TN. My first severe bout with a migraine was 2002. I was in bed for three days with a the type of a migraine that the doctor told me they rarely see. I had no actual headache, but rather I had paralysis on the right side of my face and severe eye pain. Since then on, I have continued to struggle with these "migraines". In 2005, I started having severe sinus issues. Infection after infection after infection. No antibiotic was clearing these suckers up. This went on for about a year. Then, crazy as it sounds, the last round of meds combined with some serious use of a netty pot cleared it up.... for the most part. In 2008, the doctor then diagnosed me with TMJ and I have struggled with this for the past three solid years.
I actually believe now that this was all leading up to the day I had my first real TN attack. I have Type II, with some Type I pain depending on the day. In September the frequency of "TMJ" pain changed. I thought I was having severe ear infections but there was no inflammation. Dr. said it was a change in my TMJ pain. In early October, the pain actually moved to my teeth.... I really, really thought I had an abcess... went to the dental clinic and Nope, my teeth were all fine. Doctor then said I was clenching too hard, making everything just sensitive. So pain pills, anti anxiety, and a numbing agent. The pain gained intensity to the point that in the first week of November, the pain was so bad, I honestly thought I was going to go crazy. Just when I was considering the ER, the pain went away. This happened again a week later. Then two days after that. Shorter periods.
Then one day I was in Blockbuster picking out movies when I felt my first "zap". I actually dropped to the floor and had no idea what it was. I moved my head, it happened again. I got out of there, drove myself home, with these zaps getting stronger and faster. I ran to my bedroom crying (I live with my parents right now) and my mom chased me down. I couldn't talk, I was pretty hysterical. She calmed me down, the pain slammed into my jaw... I made it six hours before I told her that I didn't know what was going on but I was scared and I needed to go the ER..... I was seen by the ER DR and a Neuro on call that night and TN was diagnosed........ That's my back story.
I don't know if you meant OHSU, which is Oregon Health Sciences University..... That is where I am applying for financial assistance because one of the TNA Board Members is a neuro at that hospital and my research shows that they have one of the best places to be in the NW. So, I am just waiting for the official decision for now.
Oh and thank you for the compliment -- but I am 36 :) However, I do get the young thing alot. And I can tell you that I do not mind at all.
Kimburlee,
I guess I found your posts in the wrong order. You had a clear MRI? Are your doctors aware of TN? If you have TN, you don't want to get surgery; I wish I had my doctor follow this course! I've used those nasal sprays but they all lose their effectiveness in time.
I posted my MRI somewhere here on my page. My neuro said this MRI was a classic depiction of TN (note that I also have MS, so don't use the MRI as your yardstick) this MRI shows TN inflamation on my right cheek.
Good Luck!
kimburlee said:
John, I went to dr. 6 years ago with minor TN symptoms and was not diagnosed with tn but sinus infection. I have been treating sinus since. My first "episode" was Dec 10th 2011. I was scheduled for surgery on my maxillary ostium on the 19th of december which was canceled due to tn. My MRI is clear! My sinus needs to be opened up. My ENT believes a vaccume in maxillary sinus cavity has developed. Now everything is on hold and I am trying to figure it all out. I want to hear your story. I currently take singular and nasonex up until this past thursday to see what my sinus will do. I am really interested.
This is Kimburlee. Thank both of you. I am trying to sort some questions out. Have I had TN all along (6yrs) and have been treated for sinus or sinus irritated the TN and I am at a new level now? I believe I have a great GP, ENT and I hear I have one the best Neurologist in our state. I have a clear MRI and my sinus CT shows a closed ostium in maxillary sinus. Time will tell and it is good to get as informed as possible. John, I have quit my Singular and Nasonex spray a few days ago. We will see what happens. Thanks you guys.
Kimburlee,
What State?
It is possible you are suffering from both sinus problems and TN, that is definately the case for me. Have you looked at other forms of therapy such as going to a naturopath? How is your diet? Ocupuncture?
The nasal endoscopies I had only complicated my situation, how could it not if they got anywhere near those injured nerves?
The one ritual I use that helps me is nasal rinsing, first thing in the morning it is mandatory. It might seem gross and it is a major hassle, but this habit has reduced the number of colds I get by at least 95%. Rinsing often helps relieve TN attacks, but sometimes it can aggravate TN.
I know the weather plays a role with TN, the other morning I looked out my window at newly fallen snow and instantly had a TN attack. I'm currently making plans to move to southern California...I'd be there now if I wasn't having so many problems with my father's estate.
Hang in there,
John
I am in SC and yes I used a Nettie pot up until 1st episode. I can't imagine using it now.
A balloon plasty is such a simple procedure but my neuro said NO. I hope to get it done one day but I don't know if I want to risk it. I can't help to wonder if the vacuum in my maxillary is the cause of my tn since it is directly messing with the maxillary nerve which is part of trigenimal nerve. But I can't seem to get enough evidence to support this. It just makes since to me and the fact that the MRI is clear and the fact that plain Asprin got rid of alot of the extreme pain in my jaw and ear. Oh, and I don't have any headaches. I know eveyone is different and I know a clear MRI eleminate some cause but it makes you question others- ct scan shows sinus problem.
Sorry to hear about your dad, I lost my mother a year ago on 13th of this month. Still dealing with details and it was very simple very cut and dry. Takes time and patience. Thanks
What a horrible tale! As much as your parents might have been a comfort to you, most people can't relate to the excruciating pain you struggle to endure.
My first experience was in 1997, a few weeks after the death of my mother. I went on a bike ride I used to do every year, I was headed down a hill and a stabbing jolt of pain shot down the right side of my face, that was it until I finished the day's ride and I was arguing with an acquaintance about something (still mad about my Mom's death), it was then I had several more zaps. Later on the TN symptoms were much more frequent but TN was never diagnosed...I too had a decent GP, but he had no idea what he was doing when he started to probe my face with his fingers, that nearly sent me through the ceiling! In my case I can say I was wondering through a medical minefield trying to find out what was wrong, and every step I took was the wrong one!
That said, my experience wasn't nearly as bad as yours'.
But right now I'm going through an episode I've never experienced, I haven't eaten anything yet today my dinner from last night is sitting in the fridge, nasal rinsing has suddenly become an ordeal and usually it helps.
This disease doesn't discriminate...young, old, white, black, every segment of society isn't safe; I even saw a Quaker couple at the Rochester conference! I met a very nice couple from Florida, the husband had gone through Gamma Knife therapy that was apparently successful, the wife thought she was starting to get TN.
If the MC had met you at the Conference I bet you would have been the reason the MC went to the podium and cried...so much grief and frustration with finding answers for us.
Now the latest thing is neurostimulation. I'm still waiting for the day that we can repair damaged nerves.
It was either a baby photo or your pain hasn't affected your aging process; to an old tode like me everyone your age looks young, at least your pain hasn't affected your nice look.
So are you a paralegal? Seattle can be interesting.
We'll find our answers someday...hang in there!
John
Lisa (iamrite) said:
John -- Thanks! I was actually cautioning Kimburlee from the surgery, I don't need one myself.
BUT, I have struggled for YEARS with two things: migraines and sinusitis.... my doctor is now thinking this has all been an evolution to TN. My first severe bout with a migraine was 2002. I was in bed for three days with a the type of a migraine that the doctor told me they rarely see. I had no actual headache, but rather I had paralysis on the right side of my face and severe eye pain. Since then on, I have continued to struggle with these "migraines". In 2005, I started having severe sinus issues. Infection after infection after infection. No antibiotic was clearing these suckers up. This went on for about a year. Then, crazy as it sounds, the last round of meds combined with some serious use of a netty pot cleared it up.... for the most part. In 2008, the doctor then diagnosed me with TMJ and I have struggled with this for the past three solid years.
I actually believe now that this was all leading up to the day I had my first real TN attack. I have Type II, with some Type I pain depending on the day. In September the frequency of "TMJ" pain changed. I thought I was having severe ear infections but there was no inflammation. Dr. said it was a change in my TMJ pain. In early October, the pain actually moved to my teeth.... I really, really thought I had an abcess... went to the dental clinic and Nope, my teeth were all fine. Doctor then said I was clenching too hard, making everything just sensitive. So pain pills, anti anxiety, and a numbing agent. The pain gained intensity to the point that in the first week of November, the pain was so bad, I honestly thought I was going to go crazy. Just when I was considering the ER, the pain went away. This happened again a week later. Then two days after that. Shorter periods.
Then one day I was in Blockbuster picking out movies when I felt my first "zap". I actually dropped to the floor and had no idea what it was. I moved my head, it happened again. I got out of there, drove myself home, with these zaps getting stronger and faster. I ran to my bedroom crying (I live with my parents right now) and my mom chased me down. I couldn't talk, I was pretty hysterical. She calmed me down, the pain slammed into my jaw... I made it six hours before I told her that I didn't know what was going on but I was scared and I needed to go the ER..... I was seen by the ER DR and a Neuro on call that night and TN was diagnosed........ That's my back story.
I don't know if you meant OHSU, which is Oregon Health Sciences University..... That is where I am applying for financial assistance because one of the TNA Board Members is a neuro at that hospital and my research shows that they have one of the best places to be in the NW. So, I am just waiting for the official decision for now.
Oh and thank you for the compliment -- but I am 36 :) However, I do get the young thing alot. And I can tell you that I do not mind at all.
Whatever proceedure you choose, get a second opinion from a TN specialist. and have him/her look at your MRI. You shouldn't have trouble finding a TN specialist near you on the east coast.
It sounds like your pain is making your decisions for you, just don't make the same mistake I did!
I'll shut up now...
John
kimburlee said:
I am in SC and yes I used a Nettie pot up until 1st episode. I can't imagine using it now.
A balloon plasty is such a simple procedure but my neuro said NO. I hope to get it done one day but I don't know if I want to risk it. I can't help to wonder if the vacuum in my maxillary is the cause of my tn since it is directly messing with the maxillary nerve which is part of trigenimal nerve. But I can't seem to get enough evidence to support this. It just makes since to me and the fact that the MRI is clear and the fact that plain Asprin got rid of alot of the extreme pain in my jaw and ear. Oh, and I don't have any headaches. I know eveyone is different and I know a clear MRI eleminate some cause but it makes you question others- ct scan shows sinus problem.
Sorry to hear about your dad, I lost my mother a year ago on 13th of this month. Still dealing with details and it was very simple very cut and dry. Takes time and patience. Thanks
Lisa,
Did you ever have your tonsils removed? I ask because I'm having chronic sinus infections, and the ENT wants to remove my adenoids and my tonsils (they're both huge), but the adenoids have swollen so large they're blocking the nasal passage near my throat.
If the ENT had suggested any sinus surgeries I would have said no, but I'm considering having my tonsils and adenoids removed, as so far I can't see how it could make my current problem worse. (pain in teeth)
If they didn't remove yours, I wonder why, because I thought that's a pretty common reason for chronic sinus infections.
Nope. I still have my tonsils.
However, they have suggested removing adenoids due to strep issues this last year (told you this last 2 years have been HORRID). Anyway, I won't let them as it will effect my singing voice and I sing. However, that is my only reason. My daughter had hers removed. I have a good friend that had hers removed due to sleeping issues. When she laid down at night it would close off her airway and wake her up. So, they removed them, and her sleep issues went away.
Crystaly
I think my tonsils and adnoids were removed when I was a kid, my Dad was an old school doctor so I think all five siblings went through this proceedure. My younger adopted sister died getting her tonsils removed, she was allergic to the anesthetic (I don't think this would happen today).
That said, I struggle with sinus issues myself. My experience has been anything but good with ENTs (I had two nasal endoscopies before I was diagnosed with TN). If you can find an ENT that is aware of TN that would be best.
I'm going to an ENT that was recommended by my neurologist; I have only read her bio, but she sold me when she said she weighed neurological issues. I recommend finding an ENT that is fully aware of all your conditions.
Pardon me but I haven't read your health history, have you been diagnosed with chronic sinusitis AND TN? If so we are in the same boat...welcome aboard! I just hope our voyage is shorter than it looks...
Thanks for weighing in on the discussion Crystaly, our circumstances are not as unique as I thought.
crystalv said:
Lisa,
Did you ever have your tonsils removed? I ask because I'm having chronic sinus infections, and the ENT wants to remove my adenoids and my tonsils (they're both huge), but the adenoids have swollen so large they're blocking the nasal passage near my throat.
If the ENT had suggested any sinus surgeries I would have said no, but I'm considering having my tonsils and adenoids removed, as so far I can't see how it could make my current problem worse. (pain in teeth)
If they didn't remove yours, I wonder why, because I thought that's a pretty common reason for chronic sinus infections.
Kimburlee,
I'm responding to this post because I think our discussion has gone full circle (for me) since we last talked.
Two Sundays ago (Jan 15, 2012), I was awakened by TN pain that would no longer allow me to ignore (even at 5AM). The pain was so intense, I could scarcely utter a word people could understand without feeling unmerciful TN pain with each word; I spent a couple hours printing out my health history along with some recent emails from my neurologist and provide the notes to the ER admission staff person, otherwise it would have been impossible to get admitted.
The ER staff administered Solu-Medrol (steroids), they also took a chest X-ray, a CT scan, and a urinalysis. The X-ray, CT scan, and a urinalysis all came up clean.
Leading up to the ER visit, I knew enough was going on with my sinus/MS/TN physiologoly to know that there was something so serious it was going to require an ER visit. When I can hear the sound of bubbles popping in my sinuses, I know it is time to take action. The strange thing is that I had managed to make it to December without a major TN fit (usually my worst time of year), but we had a snowfall at the beginning of 2012 where my body just couldn't cope.
I had a trip planned to Las Vegas then to Sedona to get away from the NW environment because I know the climate down there is better (I’m looking to buy a home in the SW United States for health reasons), unfortunately snow started flying before I could escape the weather.
My neurologist worked her schedule around for an appointment the following Tuesday, she saw I was in such pain (this was my neurologists’ first true exposure to my TN, as bad as this was I’ve been through much worse TN symptoms). Seeing my plight my neurologists’ approach was the shotgun methodology, 5 full infusions of Solumedrol (steroids), and 5 doses of antibiotics (this doesn’t include all the Trileptal, Baclofen, Tramadol, and Gabapentin) .
After about three days of therapy I started to feel better, but the problem with the shotgun approach is that there is no telling what form of therapy helped, but I guess beggars can’t afford to choose.
Going back to our original discussion, we need to understand why my X-ray, CT scan, and urinalysis all came up clean (similar to your results?). Just to make sure all the bases were covered, I’ve also made a point of going to a new ENT recommended by neurologist.
It is now the third day since completing the different therapies, and just yesterday I visited a new ENT. There has been no sign of infection, however, the morning volumes of nasal and lung discharge tells me enough to know that I had something wrong. Prior to the ER visit my nasal rinsing routine resulted in almost no discharge; but since the courses of steroids and antibiotics, the amount of discharge has increased enough to tell me something was going on that is more than technology is telling us.
This chapter in my life is yet to be told, the new ENT wants another CT scan more specific towards my plight, stay tuned until I know more…
The drugs I’ve been taking do more to exacerbate my MS symptoms than anything, so I don’t know how easily I’ll be swayed into taking more TN pain meds (Gabapentin and Baclofen I can live with, but forget the rest)…now let me bath in the splendor of remission (no matter how short-lived it might be).
Hope this adds a few pieces to your puzzle,
John
Hi John,
It is good to hear from you. I decided to take matters into my own hands and go cold turkey off my sinus meds. I did this few weeks ago and so far no difference at all in my sinuses. I have had some problems with my neck being kindof squishy, lack of a better word. Dr. ordered x-ray and then mri on my neck. He has refered me to a neurosurgeon. I have been waiting on a call for 3 days which is a good sign I guess. Meds are working for me pretty well. I am content and very thankful for that.
I hope you make it to sw soon. I know that weather will be an inprovement.
Blessings
Too bad we have to prod along in ignorance of the huge medical profession we have, I hope your approach is fruitful.
Good luck,
John
Lidocaine solution is recommended as a stop gap and is not long lasting. I use when I don’t want to take extra meds that will make me foggy? A couple of squirts numbs the sinus and allows me to function for a while. I have also applied solution to qtip and placed in nostril and held it on the painful area. I caution you to discuss with your doctor. One - you will need a script, two - dosage, three - safety!
Ironic that I tuned in, I have been having sinus headaches on opposite side that was driving me nuts. I could not sleep and top and side of head and face was keeping me from sleeping. Neck, teeth, sinus and eyes were hurting in addition it made my right side burn and fire more.
Before crying uncle and going to my internist on Monday I used netti pot and took Allegra to no avail. I even took my doggies (okay children’s- LOL) Benadryl! Ok not as bad as it sounds but it made me think about how pain can make you do goofy things.
Doc, knowing my background, decided to give me injection 15mg of NSAID, Toradol (I am on a try something new, for now, a pain med holiday) and prescribed Cipro. I did not awake to pain during the night last night, however I did not sleep much either. Today was a good day but I do not want to sleep for fear of being awaken with headache.
I posted last night the temporary solution of my neurologist injecting my trigger points with coatail of steriod and Licocaine to provide temporary relief. One of my troubling spots is around and in my nose and above my teeth.Again this is a temporary fix that allows me an hour or so of pain relief and a glimpse of what it was like to have no pain while awake.
I have an appointment with neurologist next week and plan to ask about the pro/con of these injections and will also the sinus connection. Thought it is reasonable that facial pain -TN affects the eyes, nose, mouth, …m
Remain prayful and hopeful? You are among a kinship of positive And dedicated friends who, until there is relief for all, will provide insightfulness and a plethora of help and support. Thanks for letting me ramble. You are understood.