HELP- PLEASE READ MY STORY and provide your input, I am ready to move on with life

[bmforem07]

For the past year and 1 month, I have been seeking help for problems with lightheadedness and fatigue, accompanied by pressure headaches in the back right of my head, which make their way up to my face and right eye. In addition, a muffled feeling in my right ear has also been present.  I have so far been to 3 neurologists, 3 ENT's, 1 neuropsychologist (to rule out depression/anxiety/prob.'s with medications), 3 eye doctors, 2 general practitioners, 2 orthopedic specialists (for neck trouble), and an orofacial/TMJ specialist. For an otherwise EXTREMELY healthy 21 year old, you can see how much trouble I have gone to to find this out. I have had an unnatural amount of tests done within the past year, done a lot of therapy, and taken many medications for months at a time but nothing has worked thus far.  About 6 months ago, I notices a small, pea-sized lump on the back right side of my neck/head at my hairline which I thought was a cyst, goiter, or in-grown hair.  I went to my athletic trainer and team doctor to have it removed but they were unsuccessful as it would not pop or rupture. I haven't thought anything of it until now, as I have ruled out many more possible conditions that could be causing my problems. I am going to have it examined tomorrow. I am a college student, 21 years old, an athlete/scholarship football player (And yes yes before you ask I have had 2 MRIs and 2 CT scans on my head and neck to see if it is related to football-IT IS NOT, as well as 2-3 months of therapy on my head and neck muscles for stingers to see if that is what it is as well). I am ready to have this problem diagnosed and move on to get with my life. Not a day has gone by in the past year where I feel like I am walking around in a FOG of lightheadedness/dizziness/spacey feeling with my right ear having pressure throbs, my right eye being dry, and feeling fatigued.  For an extremely active 21 year old all conference college athlete, you could see how frustrating and debilitating this actually is. If there is anyone, a Medical Professional or someone experiencing the same thing, who can help PLEASE let me know what to do. If not, share this with your family and friends or whomever in hopes that I can get my life back to where it was! Thank you in advance.

[bmforem07]

I have already been on medication to help manage migraines. As far as the other conditions, I am unaware of. It's not necessarily a pain. It's more an uncomfortable pressure that occurs in the back right side of my head and in my face. My right eye is dry and it is in the cold winter months here. When I go outside And the wind hits my face, my right eye waters, but not the left one. There is also pressure or a feeling of fullness in my right ear. It increases greatly only in my right ear when I go up and down hills when driving around here too. Not sure what all of that means but I'm sure there's a correlation as far as the right side is concerned. Learned today that the lump on my neck is just a cyst that can be removed. Also, ironically enough, had a sleep study done two nights ago and will receive those results in the middle of next week.

[Dr Sharma]

Hi there. I went through your detailed mail and understand how intriguing it must be at your age to be with so much agony. since you have been to a plethora of superspecialists , undergone various tests and what not, certain diagnosis of exclusion are cluster headache, trigeminal neuralgia and migraines.
Cluster headaches are severe headaches localized to one side, not associated with an aura like in migraine which are also a unilateral headache type. similar pain is experienced in trigeminal neuralgia except the pain is more localized in the cheek area. The pain can be very severe in cluster headaches almost lancinating and is located behind the eye or in the temple sometimes radiating to the neck or shoulder.
There may be accompanying ptosis, lacrimation, conjunctival injection and miosis on the same side as the headache. Other secondary effects can be experienced, which are inability to organize thoughts and plans, exhaustion and depression and social isolation. There are certain known triggers like chocolate, sleep or even lack of it, banana etc. treatment Is ineffective with painkillers. Specific drugs like abortive and prophylactics. Abortive like O2, triptans, lignocaine etc, prophylacticis like steroids, anticonvulsant topiramate and melatonin. Wish you all the best.

[squirtatious]

Have u thought about seeking alternative healing methods from someone like a licensed foot zoner or iridoligist?

[bmforem07]

Yes I have been to a nutritionist actually. I eliminated excess sodium from my diet for about 3 weeks and also milk for another 2 weeks.  None of it worked.  I was administered allergy medication for 2 months from a doctor who specializes in allergy associated problems. That did not help either. The list of doc's mentioned above is an abbreviated version believe it or not.  I was put on diuretics for a month and I was put on a catabolic steroid that consisted of a 2 week cycle.  Needless to say, I've pretty much tried it all.  I also got free of my medications for 2 months in the summer when I had some downtime, but that did not help at all either.   Weaning myself from the medication was awful in itself, but as I cleared up from being off of them, the symptoms were still persistent. Not quite sure what to do if no progress is made with the next doctor, I feel like I have seen them all and don't know if I can do anything else...

[meniere135]

After reading your post, I'm thinking you should post this question in the CHIARI MALFORMATION forum.  See if they have any input.   From what I've read, most doctors won't know to look for it and many never heard of it.  I'm not saying this is what you have, but it is another diagnosis to rule out.

The pea-sized lump you have might be a slightly swollen lymph node - again just a possibility.  One of my kids always has one or two on the backside of her neck.  It can be associated with allergies, food or other.  Did any doctor try steroids to see if the problem is coming from inflammation?  Since you have tried many doctors and have had many tests done, I think it might be worth your while to try food elimination.  Food issues can cause inflammation anywhere in the body.  I have had similar symptoms on the right side of my head which, in my case, turned out to be Meniere's disease.  The doctors put me on a diuretic (because it is caused by fluid buildup in the inner ear) and a drug to open up my capillaries (the tiny blood vessels) to maximize fluid drainage.  The symptoms stopped finally.  But I got tired of medications and the otolaryngologist (the ear specialist of ear specialists) suggested I do food elimination to see if that eliminated the problem.  I started with gluten (which is in wheat, barley, rye and possibly oats) and found partial relief within 24 hours and 90% relief within a week.  I was still left with muffling in my right ear.  When I read about gluten, it mentioned milk products are almost always a problem also if you have a gluten problem - so I eliminated all milk products.  After 5 days of being milk free (all milk products), I felt a trickling down my eustachian tubes and realized I wasn't muffled anymore.  So food is a powerful thing!  It can become a problem at any age.  I suggest you eliminate the above foods to see if you get relief.  And then try other foods if they don't help.  This is something you can do without a doctor appointment.  So it won't hurt to try.  If you go gluten free, which is on the internet, make sure your vitamins are gluten free and your medications.  I had one medicine at the time that had gluten in it and my symptoms didn't let up until I stopped taking it (which I did under a doctor's care).  

I hope this helps.  If not, keep reposting every now and then to see if someone recognizes your problem.  Hang in there!