HELP!!! 4 Months - Constant Headache

General Doctor (prescribed Fiorecet and tension headache neck exercises)

Sinus Specialist

Sinus CT Scan (results negative)

Chiropractor (neck and electro stimulation)

Neurologist (2 visits - prescribed amitriptylene, fiorecet, midrin on 1st visit / dropped amitriptylene and prescribed topomax 2nd visit)  I just started the Topamax 3 days ago at 15 mg and will increase to 30 mg in 10 days then to 45 mg in 20 days - I'm very scared about the potential side effects I've been reading about.

Fiorecet & Midrin did nothing for me and I've stopped their use

Brain CT Scan

Brain MRI (Regular and DYE - results negative)

Full Blood Analysis

Accupuncture (6 sessions with electro stimulation)

Sprayed house and crawl space for mold

Daily Neck stretches

Dental Sleep Device - Anti - Teeth Grind

Anti Snore Headwear

Neproxin/Ipuprofen (they do nothing for me and I've stopped their use)

Avoid foods with MSG

Cut back on Caffeine/Coffee

Over the last 4 months, I have truly come to appreciate the relatively good health I've had in the past and truly understand when people say to not take your health for granted...or when older people say "at least you have your health".  I spend most free time reading online about headaches and what people are doing to deal with them.  It is very sad and depressing reading, but it makes me know that I'm not alone.  I also want people out there to know they're not alone and that there are people, like me, who are suffering with them. 

The last few days at the ICSC convention in Vegas made me very sad and feel alone because I was surrounded by people who were happy and wanted to go out and have a good time.  All I could do was try to get through my meetings and all but crawl back to my room to lay down in bed in my dark room.  I finally made the decision to cancel my remaining meetings and fly home early and now here I am.

Can anyone offer any advice or help?

Thank you all in advance.

Jake

Post Edited (jcommerce) : 5/20/2009 9:27:37 PM (GMT-6)

Post Edited (jcommerce) : 5/20/2009 10:25:04 AM (GMT-6)

Take care, 

Jake

Thanks for the advice.  Problem is, if I don't show up for work, the only one that could give me paid leave is me since I'm a commercial real estate agent and essentially work for myself.

I do think I've figured out what may be ailing me, and that is the drug Ambien.  Back in January, it was the first thing I suspected when my headaches started and I got off of it immediately.  However, after about 8 - 9 days of being off it, the headaches were still there and my doctors said that Ambien was not the cause and I could continue its use.  I figured 8 - 9 days of being off it would show some indication if it was the cause.  So after that, I was back on Ambien and trying to find the "real" cause.

But a few days ago, I thought to myself that I should research the correlation between Ambien and headaches further and I came across the thread below of over 180 posts from people who were suffering almost the same way I have been.  It was as though I was reading my own journal.  All were on Ambien regularly, and almost all had doctors tell them that Ambien was not the cause and they were fine to stay on it.  Some of the posts are downright shocking.  The success stories came from people who quit for good and noticed that their headaches slowly went away over the course of 4 - 6 weeks, sometimes sooner.  I am proud to say that I'm on day 3 of no Ambien and I truly believe it to be the culprit.  I will never use it again.  I don't want to get my hopes up too high and be disappointed.  My headaches today were as bad as they've ever been.  But 2 years of buildup from what I've now determined to be a very powerful and destructive drug may take some time to be purged from my system.  I'll cross my fingers and hope that the coming days and weeks find me starting to feel better.

Here's the thread.  I hope it helps me and many many others out there:

"please review rules, specifically #4, Thanks"

I will continue to post updates of my progress or what I hope to be my progress.  Good luck to all of you. 

Post Edited By Moderator (tysmyboo) : 6/4/2009 11:18:16 PM (GMT-6)

I was on Ambien for sleep. I was having major insomnia starting several years back and my doctor prescribed Ambien for me. I was told it was safe and approved for nightly use. It was like a godsend to me as it allowed me to fall asleep quickly and sleep for most of the night. Before that, it would take very long for me to fall asleep and, when I did, I would wake up an hour or so later and not be able to fall asleep again for 3 - 5 hours. Horrible! But I'll take that situation back in a second in exchange for these headaches, or should I say THE headache as it is truly an ongoing, singular headache.

Surprisingly, I have been sleeping quite well after going off it (last night was my 5th night off it). I have been having vivid, memorable dreams, which is something I rarely had while on Ambien. However, this morning started with one of the worst morning headaches I've had throughout the entire 4+ months. I could barely move and my eyes were watering from the pain and I stayed in bed, in the dark, until almost noon. It was quite depressing (especially on what is a beautiful, warm Memorial Day outside) as I'm trying to keep optimistic and was hoping the severity of the headaches would dwindle as the days went by. But I have to realize that it's really only been 5 nights and 4 days w/o any new Ambien in my system and that I need to exhibit patience based on other accounts.

Again, I'm trying not to get my hopes up too much that the Ambien is the cause, because I will be very very disappointed if it's not and these *HEADACHES* continue throughout the Summer.

Thanks for your thoughts and I hope you're on the road to a solution as well. 

Jake

Post Edited By Moderator (tysmyboo) : 6/4/2009 11:20:05 PM (GMT-6)

Hanging in there, the weekend was very bad (8 - 10) but the last 2 days have been "better" (4 - 6).  I'm not sure if that's indicative of anything, but we'll see. 

Saw a new neurologist today who I liked a lot better than the last one.  She was much more down to earth and agreed with a passive approach initially.  She said it could possibly be the Ambien, but that she wanted to do a fact finding mission first.  She said it was good that I was off the Ambien and I told her that I've started a 30 day complete body cleanse system.

Part of her fact finding mission is to look deeper into my situation.  She studied the MRIs and blood work I've already had done and said she wants further information as some things on the MRIs "were concerning".  I'm going in next week for a neck MRI, a spinal CT scan, and a "gulp" spinal tap.

She said that, based on the results of those tests and my condition in 2 - 3 weeks, if I hadn't improved, it would be time to go from passive to aggressive.  That would entail a 4 day hospital stay for some extensive testing and monitoring.  Part of that would include steroid injections and other "system shock" methods.

We'll see how this all goes.  As you can imagine, I'm hoping and praying, more than ever, that it is the Ambien and that I'll be greatly improved in 2 - 3 weeks.  The spinal tap thing is not cool.

How are you doing???

Talk to you soon.

It "pains" me to hear you describe the pain you had behind your eye.  It makes me sad to hear this and I feel and hope for you.  I'm glad you still feel that you have a sense of your true self and that you have your personality, even if it's challenged at times.  I hope you're finding moments, if not hours or days, of relief and freedom from pain.  Hang in there!

Here's my latest update (sorry if it seems less personal, it was a copy and past from another post site):

I reluctantly flew back east over the weekend for a wedding in Atlanta. The rehearsal dinner was on Friday night and on Friday afternoon/evening I hit full rock bottom. I think it had to do with the fact that I had flown that day and the cabin pressure aggravated my headaches. Upon arriving at the hotel, I seriously thought I might die. It was THE worst pain I've ever experienced in my whole life (and believe me, I've experienced some intense pains in my life....ever heard of a sinus wash?). I actually was driven to tears. I am a 34 year old male and I cannot remember crying from pain since I was about 10 years old. The worst of it lasted about 30 minutes and I was very close to having my girlfriend drive me to the ER. I now have a new 10 (maybe 11) rating on the 1 - 10 scale. But then it started to subside and I actually got to the point where I was good enough to go to the dinner. This was a good thing because it was a full southern style BBQ with fried chicken, ribs, buttermilk biscuits, cornbread, etc.
Saturday and Sunday were better days. I still had headaches but I was able to attend the wedding with the help of some ibuprofen and Sunday was fairly mild with the headaches only reaching a 4 on the 1 - 10.
Today is Monday and I'm having subtle headache surges, but they have been more manageable. I'm not sure if I hit the darkest before the dawn over the weekend or if this is just a normal fluctuation I'm going through. I'm guardedly optimistic that I'm on the upswing and hopefully on track to putting this behind me.

edited to remove website, please revisit forum rules! Thanks

Post Edited By Moderator (tysmyboo) : 6/4/2009 11:24:26 PM (GMT-6)

Drop all the artificial sweetners (not that they are all bad but the idea is to make things totally simple, and then if you improve add back bit by bit till you see what's what).   Same for soy sauce (hope you aren't asian because that can be hard) no precooked or preserved meats like hot dogs, salame, bologne and aged cheeses.   Lowest available cost bottled water if there isn't some manner of filter on the public supply.   No steaming hot yeast products, let them cool to room temp.   There's a certain class of broad bean that really nukes some headache people, look it up.   You don't have to be a diet **** forever, just for a while to see how it goes.  The less time between what you eat and when it was growing the better.  Get off caffiene and if you can't then limit it to one or two at most per day and never change.  If you smoke you are nearly totally screwed so hire whatever doctors it takes to stop.  The pain should be enough of a motivator.  Some wine additives are really awful triggers, as are some beers.  You never really know beyond sulfites what flavorants a wine maker may have used or what pesticides were used on the grapes.  If you can stand it, drop the booze and if you can't then try simple fruity drinks or 'classic' brands that haven't changed forumlations use liked from before you were painful and if you aren't sure then don't use them.   If you have to drink wine: dry white. 1 1/2 per day max.  Whatever physical you do, make it about the same per day (half hour, hour) and don't be a hero and don't change.

Get a plan from whichever doctor you trust the most about what to take everyday, what to take to get rid of really painful headaches, ice-packs, anesthetic patches-- and whatever the plan is do NOT lone ranger over the counter pain meds, vitamins, supplements and so on as stopping/changing those will bring the pain back a day or two later.

Also try nothing fancy message every week.  Chiros work the bones but it is the muscles that move them out of place and relaxing those feels better and helps about as much.

I live near the Iowa - Illinois border.

Good luck!

I should have added that whatever comes in long contact with your skin can be a trigger and makeup is notorious.  There is almost no regulations about what goes in that stuff and no list of materials.  And there it is sitting on your skin most of the time.    You know there are medications that are applied as skin patches, so material from makeup makes it into your bloodstream.

So, if you changed makeups, hairspray (people breathe more of this stuff than they know), suntan lotion, whatever ---  Now would be a good time to just drop all that.    Wear a hat and skip the sun stuff just for a little while.   Simplify Simplify Simplify.