I'm very curious to know how everyone's symptoms started. Was there a trigger? Possibly a cold, sinus infection, virus or anything of that nature? Also, where your symptoms mild at first or came on later? I'm so frustrated with this. I know every case is different, but I would just like to know how everyone's started?
Thanks
I have NO IDEA what triggers my episodes. I have had this condition for 9 years now and it is episodic - it happens and lasts for about 15 to 24 hours - then suffer from what feels like muscle exhauston and constant achiness in the area for about 3 weeks. It appeared to be a once every year thing - but I had an episode July 2012 then May 2013 and then again today :( today I just happened to have a sinus infection - so with every occurance I just write everything that is going on in my body, what I ate, what I was doing blah blah blah... It is difficult for me to figure out what triggers it because of the way it manifests in my body.
Side note - I would like to hear from those who experience this type of presentation (episodic that is). Because of my increase in frequency I have a fear that it is getting worse. Additionally, this time my doctor gave me diazepam and the cluster episodes appeared to just stop. I'm hopeful this will work in the future and is not just a coincidence - but curious if anyone else had an experience like this.
Bottom line - what I am finding out is that everybody's case just seems so different - and frustrating is an understatement as to how I feel about it.
My symptoms/pain started 3 years ago. There was no trigger, no cause. It has progressively worsen over time.
Goaskalice,
Are your pains everyday and constant? Mine are constant and have been for over 4 months. I'm just looking for someone who has similar symptoms. I have a constant earache, a little throbbing in the tonsil and base of tongue area as well burning on the same side of the tongue. I also have slight bottom molar toothache as facial pain. My pains are not electric feeling and do not cause me any swallowing difficulties at all. I just wish it would all go away and I could get an accurate diagnosis. Where you diagnosed by MRI?
My pain started years ago and I was prone to sinus infections and allergies after tge age of 28, I am 46 now. The pains were just once or twice a year and I thought they were just earaches and toothaches that went away after a few days, I never went ti the doctor for them. Last year April they were increasing to monthly lasting for two to three days with pain level 4-5 and more of an ache feeling. I was caring for my father with Dementia and working full-time and put my health aside. Last September the pain was weekly and became a 5-6 lasting 1-2 days. I started at my eye doctor, unsure why but nothong
(cont)..am I the only one who finding it next to impossible to edit a response? I next went to an ENT who said my hearing was above average. I told there was an ice pick stuck in my right ear and exiting my right front jaw and to please remove it. MRI, CT scan, MRA, etc. His conclusion was possible Eagle syndrome or GPN and sent me to Neurologist. He was able to diagnose as GPN. I started meds but stopped and dealt with pain as I could not function. My father was diagnosed with Cancer February this year and passed in March. I began meds and combo of meds again again in April, only takes edge off. I am constantly in pain level 5 with spikes to 7-9. Pain now also in my throat and swallowing is difficult. Soft foods only, feels like I'm starving all the time. With all the support on this site and
I suddenly developed bulging vericose veins in my left leg and my left sided G-neuralgia started within a year. I have asked my doctors whether this tendency to develop varicosities could be related and they didnt think so. I was also exposed to mercury fumes a month before the pain started. Again the doctors thought no connection. I had complicated root canal in the tooth where my trigeminal neuralgia started followed by GN. Just prior to the pain starting, my stress level was very high! Someone needs to do a study to connect all these possible precursors!
I m looking for common precursprecursors also. Drs. say they are unable to determine a cause. I had reconstructive, plastic, surgery on the right side of my face near my ear from a dog bite but that was age four. My pain started about six months after my first very first horrible sunus infection and bronchitus. I was 28 and also developed allergies I had never had prior. The pain was tolerable, lasting only a few days and was would have very long breaks in between. I am 46 and within the last year the pain has gotten worse and is now costantly at a level 5 with spikes to 7-9. Today very bad with a constant 7 all day. Pain in throat now so bad awallowing is difficult and talking is a challenge, even for a few minutes. Can't wait for MVD.
Portland72, yes my pains are everyday and constant. I have it bilaterally. deep burning sensation in the base of my tongue. Alternates side to side, but not a the same time. Constant all day long. I also have the same symptoms that you have shared, plus swallowing difficulties. I was diagnosed by symptoms and the old tongue depressor test that checks the gag reflex.
portland72 said:
Goaskalice,
Are your pains everyday and constant? Mine are constant and have been for over 4 months. I'm just looking for someone who has similar symptoms. I have a constant earache, a little throbbing in the tonsil and base of tongue area as well burning on the same side of the tongue. I also have slight bottom molar toothache as facial pain. My pains are not electric feeling and do not cause me any swallowing difficulties at all. I just wish it would all go away and I could get an accurate diagnosis. Where you diagnosed by MRI?