Beginning to think there's no hope...

Do you think chronic headaches/migraines are a good reason for disability?
2
yes - 100.0%
0
no - 0.0%

 
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smartredfox
Regular Member


Date Joined Jan 2010
Total Posts : 103
   Posted 1/29/2010 8:20 PM (GMT -6)   
cry Headaches began on November 17, 2008.  Went through 5 different antibiodics. Finally discovered I had a sinus infection with wonderful MRSA.  Had surgery on Feb 20, 2009. Went through the 3 week healing period, got chemically dependant on the wonderful narcotic pain killers.  After stopping all medication and going through a VERY PAINFUL 2 week period because "it's probably rebound headaches you are having" only to be told "huh... that's not it".  I've had MRI x 2, MRA, CT. 1st MRI (7/8/09) showed arachnoid cyst, cerebral tonsils hung 2mm below the base of my skull. MRA was to rule out anurysm. And the CT was just on Tuesday (was in ER after 32 straight hours of TERRIBLE PAIN).  I was told it showed nothing (though I didn't see the results for myself). Repeat MRI was 1/18/10 and I was told "It showed remarkable improvement over the MRI on 7/8/09" whatever that means.  I have migraten, duradrin, tramadol w/ advil, and once again, percocet after the ER visit.  I've kept a  headache diary, rarely drink ANY caffiene, don't drink alcohol, am very careful about what I eat (ex: no MSG), had a sleep study, I am seeing a headache specialist. Long story short... I STILL HURT!!  I feel like I have lost the last year of my life.  I've tried natural remidies (peppermint oil, heat, ice, massage), tried sleeping in, tried waking earlier, tried more/less sleep. I've quit the second job I've had since this all started. The last one was a well paying job that trumped my husbands pay check. Gone. I am desparate. I don't know what else to do. Also should mention that I've recently tried wellbutrin XL (lasted 8 days) and that's when I landed in the ER with the HORRIBLE pain. I was told to stop the wellbutrin.  To describe my headaches, I feel like it's in the very center of my head. Sometimes it's all over but for the most part it's consistent. Never starts/stops at the same time. Comes on VERY suddenly and never the same time every month (nope - not hormonal either). Before the wellbutrin, my abortives and the tramadol with advil (I alternate them) would work really wel). Since I stopped the wellbutrin (was only on it 8 days - 150mg and stopped taking it 4 days ago) my abortives only last maybe 1.5 hours and I am having to take 2 times as much as before to get the 1.5 hours of releif.  Please excuse the spelling and terrible grammer. I am HARDLY on the computer anymore as it just hurts too much and I'm just not thinking too clearly. Anyway, if anyone sees some sort of pattern here that I, my family DR, my OB/GYN and past 3 neruologists am missing, PLEASE fill me in!! Thanks!

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 1/30/2010 9:28 AM (GMT -6)   

Hi there.

 

First, I am so sorry that you are going through this, but I do know what you are going through because I have been dealing with the same thing for the last 3 years 4 months and 1 week and 1 day.  It depends on who you ask if I "technically" fit the definition, since I had migraines before but most of my doctors agree (and yes that is plural) that I have New Daily Persistent Headache with Migraine.  I can honestly say that I have not had a pain-free day since Sept. 22, 06.  If the doctor doesn't want to be fit into a box, they usually just call it a status headache.  The key to the NDPH is remembering the date that it happened or what you were doing that day, basically having key memories of something that happened years ago.  I still remember that day at work and how the migraine lasted two weeks. If it is not NDPH it could be Chronic Daily Headache in Migraine. 

 

I just have a couple of questions for you? First, have you been able to do a little research on your own?  I know it is super hard when you’re in so much pain, but I want to recommend the book: Mayo Clinic on Headache published 2004.  While it is a little out of date, not much has changed in the headache research.  I first found a copy at my library, but then I bought a used copy off Amazon for super cheap (like $.27 or something silly like that).  I have found it to be useful. (That is where I got most of the information I listed in the prior paragraph).

 

Second, have you seen a headache specialist or a neurologist that specializes in headaches?  Or have you thought about going and seeing a doctor at a headache clinic?  I posted a list once on the forum giving information on headache clinics, but it might be out of date by now.  I have personally been to the Diamond Headache Clinic in Chicago and Thomas Jefferson Headache Clinic in Philadelphia. I am currently with Diamond and with a local neurologist to try to manage my pain.

 

If you have any questions headaches, clinics, etc, I shall do my best to answer them.  Or if you just want to vent, I am here for that as well.  I hope the doctors find out something soon.  Best of luck to you and feel better soon.  Take care.

 

Peace.

Michelle

 

 
 

smartredfox
Regular Member


Date Joined Jan 2010
Total Posts : 103
   Posted 1/30/2010 11:50 AM (GMT -6)   
Hi, Michelle,
 
Thanks for your reply. My heart goes out to you.  I can't imagine having lost the last 3+ years of my life. Then again, I could still be dealing with this in 3 years time.  God I hope not.  To answer your question, yes I am seeing a headache specialist. I mentioned that in my last post. At my first visit with him I was very optomistic as he looked me in the eye with his hand on my shoulder and said "I really hope I can help you figure out what's going on and help get rid of these headaches."  I've seen him several time since then and it's become more about finding out what medications help the pain rather than finding out what's causing it.  It just seems so weird to me that I had your once-in-a-while normal person headache. Then I had the sinus infection (my pain at that time was undoubedtly caused my the sinus infection, I felt like my face was going to crack or explode..the sinus pressure was terrible). I had a CT which showed a "Pan sinus infection" which meant every cavity in my face was filled  to the brim with infection. I had the surgery and the surgeon told my husband it was pretty bad but he got all the junk out, widened my passages, nipped here, tucked there, and all should be good. Of course I had pain while I was recovering but as I went for my follow-ups, the ENT said I was healing ultra fast. at the 3 week mark I was all healed fromt he surgery which was like having a big pin pop my balloon of hope as I was still in pain. Though at this point the pain different. Fealt like it was in the middle of my head. Not my face. And thus my quest began. Neurologist, family Dr, headache specialist...  I've been on many different medicines. There's still many I haven't tried.  But I am tired of being on medicine. I am tired of walking around like I am floating on a cloud in order to not be in pain. My poor daughter is such an active girl yet all I seem to tell her these days is "Mommy can't play right now hunny, my head hurts again..." and the disappointment just builds and builds until I just give up and play in pain.  Right now she wants to go on a winter walk (snow is coming down outside) and I am trying to muster up the strength and endurance to get out there with her.  I want to give her a better life than what I am able to at this time.  I've researched online countless hours.  I'm always talking about it to people I come across cuz who knows, some day I might run across that one person who says "Hey, it sounds like you have XYZ... go and do ABC and your headaches will go away!!"  (wishful  thinking at its best).  Anyway...  I'll continue to research. See my Dr's.  I have to keep fghting cuz of my daughter. If I didn't have her, I probably would have quit trying a while ago. Drop me a line if you ever hear of any weird new up and coming treatments/cures.  I think there are a lot of us that are desparate.  And thanks again for your reply. And I'll visit our library and see if I can find that book. Maybe it will have some answers.

LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 1/31/2010 1:50 AM (GMT -6)   
I just wanted to quickly mention the thread on New Daily Persistant Headaches.  I read through the whole thing this morning and it has a lot of good ideas on medications and possible treatments. I think it will help you out a lot if you already haven't checked it out. :O)
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