any guesses?????????...........

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jermy
New Member


Date Joined Jul 2007
Total Posts : 13
   Posted 8/9/2007 12:10 PM (GMT -7)   
hello, hoping somebody might have some insight into whatever this disease is. i have had a headache now for about 4 years. it started as a sinus infection/headache that would not go away. ive been to the best ent doctor, had
3 ct scans a septoplasty,countless pills, nothing has helped. i know my nose is at least a part of my problem, regardless that the ent doesnt think its causing my headache. the headaches are always acommpanied by my left nostril which is still narrowed due to the septum, closing up and only being able to breathe on one side. i know i grind my teeth as i have been told my dentists and i know my bite is wrong. im sure i have some degree of tmj. also i have some problem with my neck which could be causing my pain in my face. it locks up a couple times a year and a chiropractor has x rayed and said i have a pinched disk, although i am wary of his opinion. all of this in combination with a wicked case of GERD and a hiatal hernia. maybe the protonix is part headache to blame. i dont know what to do. the neurologist gives me more pills that dont work. the gen practitioner tries to tell me im depressed. and the ent acts like im imagining things. absolutely frustrating. of course im depressed, i have a headache all the time and cant work. ive contemplated taking drastic measures more than a couple times. help!!!!!!!!!!!!!!!!!!

jermy
New Member


Date Joined Jul 2007
Total Posts : 13
   Posted 8/11/2007 10:10 AM (GMT -7)   
thats what i figured.....hopeless mystery

Crstyne
New Member


Date Joined Aug 2007
Total Posts : 7
   Posted 8/11/2007 2:36 PM (GMT -7)   
Whatever you do don't give up!  Have you ever had a sleep study done?  Maybe the grinding of your teeth and not beaing able to breathe properly is interefering with your sleep and therefore causing other issues??  I know that headaches are one side effect of sleep apnea.  Also, have you tried wearing a mouth guard when you sleep?  TMJ will definitley cause headaches also.  Keep doing your own research - sometimes you have to be your own doctor.  Wish I could be more help to you................

baseballmomof3
Regular Member


Date Joined Apr 2007
Total Posts : 189
   Posted 8/12/2007 8:59 AM (GMT -7)   

jermy - I am sorry that I haven't gotten back to you sooner.  Seems everyone kind of takes a break from here over the weekends.

First, I (and probably most everyone on here) understand your frustration regarding trying to get a diagnosis.  Headaches are one of the the toughest medical conditions to try to have treated.  Why?  Because they take time, effort, energy, etc. on the doctor's part.  My neurologist told me from the beginning that controlling (notice that I never said a word about curing) my headaches would take time and experimentation.  There are so many kinds of meds out there to help, each with its own positives and its negatives.  He told me that we would probably have to change meds several times until we find one that works and even then, once a med works, it probably won't work forever. 

My suggestion is that you find a good neurologist that specializes in headaches.  Where do you live?  Maybe someone on here knows of a good headache specialist.  I just sent a friend of mine's daughter to the Diamond Headache Clinic in Chicago and they loved it.  Then entire clinic only treats folks with headache issues.  If you are close to Chicago or are able to get there, you might consider it.  I live in Georgia and if my headaches ever get where the meds are not working, I will go to Chicago. 

The most important thing is don't give up.  There is a doctor out there that can help you - whether your headache is coming from you nose, your jaw, your neck or are some form of migraines.  Remember that the docs work for you.  Find a doc who specializes in headaches (look in the phone book, call your local hospital's doctor referral number or ask around and see if your friends know of anyone).  Call the office and set up an interview (a consultation) with a new doctor.  Tell him that you are there to decide whether or not you want to hire him to be your doctor.  You are your own advocate.  That is the hardest job in the world.  You are tired and hurting and don't feel good and you need to be fighting for your rights.  Take along a family member or a friend that can help you.  Write down all your questions prior to the visit.  Keep a "Pain Diary" and a "Headache Diary" for several weeks prior to seeing any doctor - that way they know you are serious about being involved in your own care.

Also, please know that pain that last for very long can definitely cause depression.  I say all the time that of course I am depressed - my head hurts all the time!  Who wouldn't be depressed?  One type of med that is used to prevent migraines are anti-depressants.  They sort of serve two purposes - prevent your headache and prevent your depression.  This might be a good starting place - ask the doctor when you interview him.

Good luck and know that you are being thought of.  Please post again and let us all know how you are doing.


DX:  Migraines since June, 2006, kidney stones
 
RX:  Daily - Verapamil, Trileptal
PRN:  Relpax, Prednisone, Dilaudid, Lortab, Lidocaine Nasal Spray


Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 8/13/2007 5:17 AM (GMT -7)   
Hi jermy,

I can only echo what baseballmomof3 has said, it can often take years to find the right med for you, and also it needs the right Doctor (i.e. Headache Specialist) who understands and is knowlegeable about headache!!

Personally I was sent from ENT to GP and back again for years and they both looked at me sideways each time as they could not puzzle out what was wrong with me. When I started keeping the headache diary my GP took me seriously and sent me to a Neurologist who then finally after trying different drugs sent me to a Headache Specialist!

This has taken many years for me and my Headache Specialist has now diagnosed 'Hemicrania Continua' which is a rare headache, and I am now on the right treatment!!!

Hang in there and find that Headache Specialist!!

take care

Ann
Co-Moderator of the Migraine/Headache Forum


jermy
New Member


Date Joined Jul 2007
Total Posts : 13
   Posted 8/26/2007 7:37 PM (GMT -7)   
yeah its frustrating to say the least.....more like maddening......its seem so obviously caused by the membrane in my left nostril closing up....the headaches always are accompanied by this and hacking up
tons of mucus......the migraine drugs really dont work.....seems like a combination of allergies, something anatomic in my nose, tension and maybe reflux going up in my nose. plus the sideeffect headache from the refux drug...all of this is so depressing since im broke and unemployed. these debilitating health issues are ruining any hope of getting my life together. i dont even see any point in going to the doctors. they just give treat me like im imaging all of this, like its no big deal.......................argh

AngMichelle
Veteran Member


Date Joined Apr 2006
Total Posts : 932
   Posted 8/29/2007 6:32 PM (GMT -7)   
Please don't hate me, but what is your diet like?? A lot of undianosable headaches are a result of poor diet. I would suggest a black rasberry tea enima. I know it doesn't sound like much fun, but it really helps and what can it hurt. We all probably could use this. Any place that sells herbs sould be able to help you find something to natuarally cleans your system. I have found that my small intestine is a big trigger for h/a's.

Baseballmom had good info as well. What meds does your neuro have you on?

Best to you,
Ang
ps:read the post on the five minute energy routine
DX-Migraines:PCOS(should have seen this list before!!)
Meds; imitrex inj, stadol ns PRN severe h/a
 ProzAC 40mg, Klonopin 1mg BID , Ambien 10mg
PRN, Pherergan, Actiq 600mcg(fentanyl suckers) for migraine breakthrough pain
 Doing engergy medicine!!!!
 
May God give you a reason to smile today, an extra reason to laugh, and bring joy to your soul.


jermy
New Member


Date Joined Jul 2007
Total Posts : 13
   Posted 8/29/2007 10:46 PM (GMT -7)   
i dont hate you.....but somehow i dont think projecting rasberry tea into my uhhhh....is going to help.....im sure i would forget about my headache for a minute, at least. the neuro gave me elavil and imitrex both which did nothing for me................

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 8/30/2007 12:32 AM (GMT -7)   
Hi jermy,

Did you Neuro give you Imitrex tablets? If these do not work for you, you may find that you would do better with the injectable form of imitrex!!!!

Let us know how you get on.

take care

Ann


Co-Moderator of the Migraine/Headache Forum


jermy
New Member


Date Joined Jul 2007
Total Posts : 13
   Posted 8/30/2007 12:48 PM (GMT -7)   
jermy said...
i really have doubts that im experiencing migraines.......its seems like ive got this perfect storm of something making my left nostril close, then i grind my teeth at night, plus i have some pinched disk in my neck, plus
awful allergies and am on GERD medication that creates headaches.......doctors are giving me no soutions that seem to work..................i feel horrible.....even right now my head is aching and i feel sick........ii dont know what doctor to call or what to do at this point........maybe i should just check myself into the hospital....

chloegirl
New Member


Date Joined Aug 2007
Total Posts : 3
   Posted 8/31/2007 3:03 PM (GMT -7)   
I'm sorry you are having such a miserable time. You have Gerd, allergies,a closed up passage and multiple sinus infections, which are all signs of food allergy and intolerance. If I come in contact with MSG, sulfites,nitrates or food coloring I can get horrible migraines that last for weeks. I would start a diary of everything that I put in my mouth and what physical complaints I have. If you get a migraine, go back and look for a pattern. and go back 48 hrs from each migraine and look for what is in common.If, on Saturdays you always have a migraine, and on Friday nights you go out for pizza and wine or beer, then you know when to start looking. Start eliminating different factors from the equation. Skip the wine, see if the headache is gone.No, then leave the pepperoni off. keep trying until you find what is the trigger. Dairy products are known to be common allergans and the cause of plenty of sinus problems, and the fat from cheese really tears up a gerd stomach. So, look at that link closely. I hope this helps you.

Mary B.
New Member


Date Joined Aug 2007
Total Posts : 7
   Posted 8/31/2007 5:34 PM (GMT -7)   

Hi,

Maybe I can help..40% of all migraines are centered around the nose and are accompanied by nasal stuffiness.  Also it is quite common for me to see patients who developed migraines after an infectious disease of some sort. I practice neurology in a large headache center.

If misdiagnosed (the CT of the sinuses are normal) then mistreated, the patients begin to transform (yup it is called that) into CDH or chronic daily headache, with break through migraines.  They then reach for all the over the counter stuff and now also have some analgesic rebound syndrome..

I saw a lady today at 4pm..last patient of the day who sounded just like you.  I see 70-80 headache patients per week in a very large headache clinic..

Get to a headache specialist..there is help and you are not the only one who is this way.  Check the National Headache Foundation's website and a few others for the headache clinics in your area.

In the east: Manhatten Headache clinic,  Dent Neurologic Headache Center,  Jefferson Headache Center. Johns Hopkins also

Midwest: best one is Michigan Head and Pain in Ann Arbor..Diamond is not as big as people think.

South: Emory has a great headache center

Sorry..not too familiar with the ones in the west except I know that UCLA has a headache clinic.

Good luck..my best recommendation from professional association is Michigan or Jefferson in Philadelphia. The doctors there are rated #1 and 2 buy those of us in the field.  I personally work at Dent Neurologic.

Mary Kay


jermy
New Member


Date Joined Jul 2007
Total Posts : 13
   Posted 8/31/2007 6:37 PM (GMT -7)   
thanks for the advice mary .....i was prescribed migraine meds by a neurologist recently but they didnt help the pressure stemming from my plugged nostril.....ive got horrible dustmite allergies and antihistamines seem to help although only partially.....i think these protonix pills the stomach doctor has me hooked on for the last 4 years are killing me.....my joints also ache.....ive stopped taking them to no avail....stilll end up with a headache only doubled over with reflux....argh............im gonna end up on bus bench soon.........thanks for any advice

AngMichelle
Veteran Member


Date Joined Apr 2006
Total Posts : 932
   Posted 9/1/2007 2:20 PM (GMT -7)   
you'd be surprised how much a colon cleanse would help. Ask any herbitologist or health food person, seriously
I hope you are finding relief
DX-Migraines:PCOS(should have seen this list before!!)
Meds; imitrex inj, stadol ns PRN severe h/a
 ProzAC 40mg, Klonopin 1mg BID , Ambien 10mg
PRN, Pherergan, Actiq 600mcg(fentanyl suckers) for migraine breakthrough pain
 Doing engergy medicine!!!!
 
May God give you a reason to smile today, an extra reason to laugh, and bring joy to your soul.

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