I. My present condition.
Everyday for the past 3 years, I feel throbbing on the left side of my nose in one place. It seems to coincide with my heartbeat. About once every two days a shooting pain originating in the middle of my left eye shooting downward though my eye will accompany the slight throbbing in my nose. Then about once or more recently twice a week, I will have an episode. The episode is a throbbing pain in my left nose that will increase and increase to a point of extreme pain. It gets to the point where I am nearly in a fetal position. The pain in my eye becomes a much greater shooting pain. It gets worse and worse. My blood pressure starts to increase and eventually goes into the 180s. I have tried many things to make the pain stop, I have shot salt water though my nose, I have used Afrin, Flonase, Fluticasone, Nasonex, and Astelin. No relief. I tried to use a Q-tip to apply the medicine and salt water more accurately. This led me to pushing a Q-tip up the left side of nose. When I force the Q-tip up my nose and through what feels like under a bone, my ears pop and the intense throbbing slows down immediately, I even become dizzy. I feel as if the Q-tip is creating separation. The Q-tip head is often flat b/c of the pressure needed to force the separation. When inserted, the Q-Tip is completely in my nose. I will leave it in their for 30 minutes. When I take it out, I will usually have some dried blood and I will often sneeze out some smalls scabs and dried blood. I have been using this Q-tip method for two years now. Sometimes the Q-Tip method will not work because the pressure is so tight I cannot force it open. . I almost exclusively use the Q-tip on my left nostril. Maybe once a month, my nose will burn on both sides in the same exact spots and I will put the Q-tip in place on both sides; this also somewhat helps. To clarify what âhelpsâ means, it brings the pain down to a level that I can tolerate it.
To date, seven ENTs have said that the Q-tip method is strange, but does not pose a threat. I believe two ENTs have said not to do it because âit might mess something up.â My reply is I can no long deal with the pain. It is the only thing that gives me some sort of relief.
I have been to the ER due to the extreme pain. I have gone as recently as three weeks ago, and almost went last week. What happens is they move me in quickly due to my high blood pressure, and then give me Xanex, take x-rays of my brain and then move me out the door.
a. Other symptoms I am experiencing since my 2003 surgery:
1. Sneezing: I sneeze violently 20 plus times a day now. Prior to my surgery I would not sneeze 20 times a month or maybe a year and never so violently.
2. Ringing in my left ear: I often have a ringing in my left ear that will last for hours. It often follows when my left ear pops. It is only on the left side. This seems tohappen when the pain in my nose is at is at its least. It sounds like Tnnnnnnnnnnnnnn. When this happens, my ear just feels weird, like there is water in it or something and it often is itchy.
3. Ears popping: My left ear seems to pop all the time now. It has popped six times since i started writing this. Like the ringing, it seems to happen when the pain is at its least. I canât recall the last time my right ear has popped.
4. Dizzy: I often find myself getting dizzy now.
5. Fatigue: I am very tired, will decreasing desire to do anything (very unlike me)
6. Nerves, restlessness: I am often on edge and cannot sit and rest anymore.
7. Neck pain: I have increasing been feeling nerve pain in my neck. I have no idea if this related, but I find it strange that i have never experienced it before the last three years. This has seem to become more intense in the last year. On a scale of pain (with my nose being a 9., I would give it a 2. I can live with it.
8. Left shoulder blade: Let should blade pain. I have had a throbbing in left shoulder blade for six years. It feels like a nerve is being compressed.
8. Depression: I feel like I am in a deep hole looking up, and everyday it gets deeper.
b. Personal Habits
I do not drink, and have never smoked or used drugs, ever. I have always been an athlete. Up until a year ago I was working out the best I could, but all that has ceased due to my constant daily struggles.
c. Triggering Events
1. When I go on an airplane, I almost always have an episode.
2. When i seem to drive long distances, I almost always have an episode.
3. Weather changes, I almost always have an episode.
4. For no reason, out of the blue I gets episodes too.
d. Treating Physicians
In the last three years, I have seen nine ENTs, and three neurologists. Only two ENTs really listened to me. The others just prescribed Flonase with really looking at me. The two that listened looked at my sinuses and said they seem to be clear and I should be fine. The neurologists, tell me to see an ENT. The ENTs tell me to see a neurologist. There has never been any real communication between the two despite each sending back forth like a ping pong ball and despite my demands they speak. I also was told to see an allergist. This has gone now for three years and brought me to the brink. I was tested and told no reactions over a plus 1.
I was told that it was not trigeminal neuralgia b/c my pain is constant. I was also told the ringing and general headaches could be TMJ, but TMJ was not the cause of nose pain.
II. Prior medical history
2004- Complete sinus surgery, including polypectomy, turbinectomy, septum, and left side nostril bone spur removed.
What is odd to be is that the left side of my neck has pressure points; my left shoulder blade has one very hot point, and my left side my nose has one extreme hot point that has completely taken over my life. Can this be related? Seems like an odd coincidence
Could the sinus surgery in 2004 damaged my nerve?
Could the bone spur removal in my left nose have caused a hot point? I remember waking up after the surgery and there was this extreme hot spot on the left side of my nose. That is the same spot that hurts me today. Could that be the cause?
I am desperate. I have no more energy to fight this.
See a neurologist...go to Mayo Clinic. It may be Trigeminal Neuralgia or a problem in your neck ...all those problems cause facial pain. Just go to Mayo. I am on my third neurologist..this last one at the Neurological Inst of Chicago, Dr. Wang, wants me to go to the Diamond Migraine Clinic in Chicago...because I am not doing well on the meds. Frankly, they don't want to be bothered if you are not getting well on what they think is wrong with you. Most doctors won't think out the the box. They go with the "typical migraine" although my pain is mostly in the pack of my head and neck. He never even did an exam it was all a conversation how he go his diagose. I don't even know if anyone looked at my MRI..you would think they would go through it with you so you could be reassured. I had migraines for 40 years until I started menopause and I have been free since. They were always on the right side and this is the left. I have had this every day since Aug 23. When I had migraines it would be for two days and be over and the pain was not even one bid the same.
Your post has been here for a few years, hopefully you got it solved in the mean time.
If not, have you looked at Eagle's syndrome? This can be caused by a tonsillectomy, and can possibly explain the above. It is rare and hard to diagnose (known for often being missed by a variety of doctors), but I hope this may help you. More on this syndrome here:
To me it seems like somethings sweels up in your nose because of the temperature change, the pulsating pain increasing with the heart beat means sweeling. You also might have an eustachian tube disfunction that is causing the ringing in your ear, you should have ear pressure test done, to see if there is no vacuum in your ear drum due to untreated ear infections and you might have a nosal shells that need to be surgically cut down. Ent doctors in America will not help you, unfortunatelly its all about the money there, and some insurance companies will deny testing, so they will blame the symptoms on TMG( which is absolutelly ridiculous) or migrane headaches. I had this problem recently, pulsating pain in my nose, couldnt breathe, ringing in my ears, pain around and in my ear, felt dizzy and without an energy, I went to 6 ENT doctors in America, one said its Migrane headache(never had migrane headache in my life) he said" Well, now its time that you get one, dont you have a stressfull job?", and he prescribed me pills that are meant to treat bipolar desease and its side effects such as loss of vision are much more dangerous then my actual symptoms were. Then the next ENT doctor sais that I have the famous TMG. I was ready to shoot my self at that point what an EXUSE for his lazyness to blame my serious symptoms on TMG , modern desease and I dont even grind my teeth at night. Next ENT doctor gave me Nasonex spray and said that its the combination of TMG and Migrane headaches. I could only laugh at that point. Thank GOd I am also European citizen and I have access to good old European doctors, that will do All the testing in one or 2 days to trully uncover the reason of your symptoms and not just wait for the money from the medical insurance to possibly be willing to pay for your testing. How sad. Anyway, sure enough, my ENT doctor in Slovak Republic did all the tests, including ear drum pressure, that no ENT doctor even talked about would be necessary and came to a conclusion. I have chronic tubotympan infection in my ear and the eustachain disfunction and he needed to insert the tube in my ear to equalize the pressure.The reason why I had the pulsating pain around my nose and couldnt breathe was because the eustachian tube was infected and swollen , the ear had the infection, otis media that was not treated, became chronic and vacuum in the ear drum was created, causing underpressure and bad ventilation in my ear( ringing in the ear, etc) Then I had hypertrophius of lower nasal shells, that would get even more swollen if temperature changes, alergies, etc and needed to be cut down to eliminate the sweeling and allow the proper air flow and breathing. I just had my operation and everything seems to be back to normal... So what I would recommend is that you consider visiting A doctor in Europe, make a vocation out of it and get proper treatment. Today you can get insurance for 40 Euros, or you can get an international insurance Alliance, that will cover your medical problems all over the world, so you are not locked in to see only American doctors, that only care about the money. There is places in this world where so called OLD system works, where doctors get paid salaries from the governement and it is in their interest to heal the patient no matter what, rather then bull.... them!
Hope that gave you some perspective on options, and remember there is always a solid reason that can be treated to your symptoms. You just also have to do your reseach on internet, google your symptoms , read medical books, and decide for yourself..And go to Europe,Slovak Republic, city Kosice(World Championship in ice hockey is taking place here right now) I quarantee you, your problems will be soon over..