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HELP!!! 4 Months - Constant Headache

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Posted 6/5/2009 8:21 PM (GMT 0)
Krista- Thanks for the information. I am actually going to a pain management clinic in a couple of weeks. I'm looking forward to what they have to offer. I see my neurologist on Tuesday; he hasn't been much help so far. I'm going to ask him about some medications I've read about on this forum.
Yes, I have a lot of trouble sleeping! I was awake from 1:30-7:30 this morning and felt like killing someone. Ugh. A lot of my headaches come at the end of the day, and then I want to go to sleep early. I went to bed at 8 last night. That's still not enough sleep, obviously. I've been trying to go off my sleep medication and anything I absolutely don't need, just to try to get these headaches to go away for a while at least! But not sleeping is obviously not going to help. It seems like one evil or the other. I've woken up with migraines around that time, though, too. I just had a horrific one the other night that made me sick to my stomach. Is there no rest for the weary?

DadofPainBoy- thanks for the other tips. I've been steering clear from make-up for awhile now, but it's not making a difference. I think I have some other things I can make scent-free though. I have sensitive skin, so I already use a lot of hypoallergenic products. They seem to work well for me. Recently I got the brilliant idea to get regular body wash, though- I just wasn't thinking. I think I'd better switch back.
I don't know when I'm going to get to go on my trip. My husband thinks it's a crazy idea, but maybe I can just go without him. Ha! He'd be so jealous. We'll see. Maybe in August we can head out west.
Posted 6/6/2009 9:29 PM (GMT 0)
Krista,

I'm glad to hear you've been finding some relief and have been able to get out and enjoy some activities. It sounds like the shots are at least helping some and providing you some relief. Let me know how your neurologist appointment went.

As for an update on my end, I went and had 2 more MRIs and a CT Scan on Thursday at the instruction of my new neurologist. I'm still waiting to get the appointment for my lumbar puncture (spinal tap). Unfortunately my neurologist had an unexpected death in her family and may be out for some time. I feel bad for her and for the fact that she won't be able to analyze the results of my tests or order the lumbar puncture anytime soon.

I'm still having terrible headaches even though it's been 17 days since I stopped taking Ambien. I was really hoping to see some slight signs of improvement by now, so it has got me quite depressed. I have been planning a trip with 4 of my friends for almost a year to go to a music festival in California and it's coming up in 2 weeks. I'm 90% sure I'm going to have to back out and it's got me very down.

It's been a hard week for me, but your improvement gives me hope! Good to hear back from you...

Jake
Posted 6/12/2009 1:40 PM (GMT 0)
I just found out I have TMJ. I went to the dentist on Wednesday and wasn't surprised, but certainly disappointed, at the news. I have to have a mouth guard fitted next month. Hopefully that'll help with the pain. I can definitely feel it in my jaw today, radiating up into my head. Ugh.
Posted 6/13/2009 11:17 PM (GMT 0)
You should be ecstatic, all things considered, because at least you've found the cause.  The next worst thing to the pain is not knowing what's causing it.  I would be very happy if I could find the cause of my pain.
Posted 6/14/2009 8:41 AM (GMT 0)
jcommerce: I would be super happy if I knew that was the only reason for my migraines! Definitely! Unfortunately I already know it's not. I get them from stress and crying, too, for instance, and who knows what else. Don't get me wrong- I am happy to have at least that cause identified and that it's treatable. Hopefully the mouth guard will do me wonders and really cut back on the migraines. That'd be very wonderful and welcome. Good luck in finding out what's causing yours. I know how frustrating it is to be on the lookout.
Posted 6/14/2009 7:48 PM (GMT 0)
Kristin, my best of luck to you.  I hope it does indeed help.  Just a heads up...the mouth guards can cause your jaw to be sore from it being positioned different than normal.  The side effect of a sore jaw???  You guessed it, headaches.  Round and round we go.  The jaw soreness should go away over time though as it adjusts to the new position.
Posted 6/14/2009 9:14 PM (GMT 0)
I can totally relate to what you're going through. I have been suffering for 30 years with migraines. In the last 6-7 yrs, they seem to be coming from neck spasms. Like you I tried everything short of hypnotism ( which was my next and last resort). I have missed out on so much life with my family and my children. If your migraines originate from your neck, than you'll want to look into a NUCCA (National Upper Cervical Chiropractic Assoc.) doctor. I was referred to one by my regular chiropractor, after having very little relief from them. They are not at all like a regular chiropractor. They specialize in the top bone of your spine, known as the atlas bone. It holds everything up. If you go on line you can type in NUCCA and get lots of info. on it. I was in bed 24-7, by the time I found out about this. Not only could I not hold down a job, but I couldn't even care for my children. After having a 7 day 10+++ headache, my husband put me in the car (so nauseous that I could barely move) and drove me to the place. I had an adjustment, which I thought was a joke. It was so gentle it was hard to believe that it could do anything. You have to rest afterward  for about 15-30 min. By the time 30 min. was up, my neck felt better. By the time I went to bed that night (my appt. was @4:00pm) My 7 day excrutiating migraine was completely gone!!!!!!!!!!!!!!!!!!!!!!! I am serious. Trust me if you're in that much pain, it is worth trying it out. I have had only five adjustments so far, but I've been headache free for one week now. I am still going through the treatments, but they are working so far. I wish you all the luck. Please go to them it literally saved my life.

relief at last.

Posted 6/14/2009 9:21 PM (GMT 0)
Update - 25 days off of Ambien. Had the lumbar puncture (spinal tap) Friday morning and it was a piece of cake. There was absolutely no pain involved. The doc simply gave me a shot of deadening agent in my lower back, which was nothing more than a slight prick. about 30 seconds later, I asked how long it would be to take effect so he could do the puncture and, to my surprise, he said that it was already in! Unfortunately, the pressure released by the lumbar puncture did nothing to help my headache. In fact, I believe it worsened them (90% chance of headache side effect from lumbar puncture for 2 - 3 days following procedure). I have a horrible headache today as I'm writing this. It's the frontal one I've had for a long time PLUS a new one on the back of my head, which is undoubtedly the spinal tap side effect.

Here's the really strange thing. I decided to take some Midrin that was prescribed for me several months ago and it eased the one headache I have in the back of my head (which I'm sure is the spinal tap headache, which they say lasts from 2 days to 2 weeks). I'm now back to the original headache I've had for 5 months. So crazy how painkillers are effective on one type of headache, but do absolutely nothing for the constant, frontal headache I've had for almost all of 2009.

Oh well, will have to await the results of this and the MRIs and CT scan I had last week. Until I can find an answer, life continues to be a constant, daily struggle where I wonder how much more I can really take.
Posted 6/15/2009 7:42 PM (GMT 0)
First I want to say: HANG IN THERE!! I understand what you are going through.. I've been dealing w/migraines for a little over 10 yrs I've tried so many meds & other treatments & NOTHING has worked.. it may give me a laittle relief for a period of time then LOOK OUT - it comes back full force plus!! I've been trying to get on SSD for over 2 yrs now, am now on the docket to see the judge - it can be 8 months to 2 yrs. Our incomme has been cut in half & we are behind in everyting close to losing our car & possiably our home. My husband is working 2 different jobs to help, but it's not enough $$. We are at a loss - we just want the pain to go away. I'm not a good wife any more, I don't cook & bake like I use to. Can't watch my grandchildren w/out help - w/out my husband home... I get dizzy & do forget things a lot so I just can't watch those babies.. I love my grandkids & kids & husband, but all I want to do any more is lay in bed. I have depression also, nothing seems to help. They also have me on High blood pressure meds - I don't have High bp unless I have a migraine - which seems to be everyday these last 7 yrs. I have lost my job - cause I was using my sick days - thought that was what thet were for!!?? I've had doc says it's in my head Ican't have this much pain everyday.. when they say that I just want to put their heads in a vice & squeeze their heads tilt hey can't take it any more & keep going MORE!! I just want it to go AWAY NOW!! I'm not asking for 100 % I'd be HAPPY w/80 - 75 % even... PLEASE HELP ME sad confused

THANKS FOR LETTING ME VENT!!!!

Posted 6/22/2009 5:44 AM (GMT 0)
Hi Jake.
I was thinking of you earlier today and looked to see if you had any updates on the forum....any results back on your tests?
I SO hope you heard something and have been able to make some headway into feeling better.

I had a tough week last week.....YIKES.....headaches, headaches, and more headaches....and then to make matters even "better" my all time favorite insomnia has kicked in again. I tell ya...what does a person have to do to catch a break?? :)

Drop me a line when you're up to it.
Krista
Posted 6/22/2009 7:26 AM (GMT 0)
jcommerce- thanks for warning me about the mouthguard. Hopefully it will eventually help! I'm a little nervous about the whole thing, but at this point I'm willing to try just about anything to get my headaches to go away.
Posted 6/22/2009 8:32 PM (GMT 0)
Is your insurance covering TMJ mouth guard? None of my insurance carriers have ever covered TMJ related issues.
Posted 7/1/2009 4:12 AM (GMT 0)
Bumping this to see if anyone has additional input.  Thx
Posted 7/1/2009 12:38 PM (GMT 0)

Hey Jake......are you feeling ANY better???

This morning I'm going to get yet another hearing test done and visiting with my audiologist. They did find about a year ago that I had a decrease in hearing (about 25%) in my right ear along with a vestibular infraction.....(WHATever that is!!...supposedly these infractions are supposed to "fix" themselves).

I have had horrible horrible vertigo bouts (2 severe ones) within the last week. I have found that my headaches....thank goodness...have vered off a bit; however, my dizziness and nausea is totally out of control.

I'll be putting the hammer down this morn. to tell them I'm not leaving the office until they have a plan to fix this problem (as my body tells me this is what has caused my year and a half of all my problems)! We have tried meds....physical therapy...and a change of diet.... specifically for my vertigo and to no avail.

Wish me luck....(and the docs too....tee hee...I'm in a bit of a "mood" today)!

Keep me posted on how your doing!

Krista

Posted 7/1/2009 3:32 PM (GMT 0)

Hey Krista,

Good to hear back from you and I'm glad to hear your headaches have decreased.  I wish you luck at the Doc's today and support you in standing firm to have them help you find a solution. 

I still haven't ruled out that Ambien is/was the cause of my headaches as I did notice an approximately 20% improvement at week 5 of being off the crap.  I'm at week 6 as of today and I'm still having the headaches, but there's much more of a pattern to them now.  I wake up feeling relatively good, then around 10am, I start to feel the first dings of the headaches coming on.  By early afternoon, they're at about a 3 - 4, and by evening they're anywhere between a 5 and an 8.  I'm also finding a bit of relief from some of the pain meds I've been prescribed, like Midrin.  Naproxin and Ibuprofen do absolutely nothing for me, but it's nice to have something that takes a bit of the edge off.

Saw my neurologist again yesterday and she decided to put my on high blood pressure medication.  Not because I have high blood pressure, but to try to reduce the pressure in the blood vessels in my dome.  She's starting me out on a low dosage for the first month.  We'll see how that goes.

Again, I wish you luck today.  Let me know how it goes.

Posted 7/3/2009 10:38 AM (GMT 0)

Hi Jake.

Well...well...well...I just knew it. Even though I was totally shunned my an "audiologist specialist" about 6 months ago. My "normal" ENT doc told me that I have Meniere's Disease.  (are ya at all familiar with this?) Apparently a doc from Mayo did a study back in the 80's and found that the vitamin Lipoflavinoid either eliminated in decreased Meniere's symptoms in 80% of those studied.

I FINALLY found it after searching for it for 2 days at CUB foods pharmacy.  The pharmacist....rather rude, but then again it could have been my mood..(hee hee), was like "yeah, we have it....but it's $27.84 for 100 tablets".  I asked her "well, does it work?" She said from what she has heard if I were to take at least 3 tabs a day I should see improvement....."should"....good grief, I then said " I don't care if it's $100 for 25 tablets if it works....pack it up...."sold".!!

Oh and Jake....the best part is.....I was reading the box when I got home.....and it stated that "results should be seen within 4 to 6 months".

COME ON....are you kidding me??? As always, I just shook my head a little, gave off a short giggle....and remembered my old day to day saying when I wake up in the morn......"nothing....and I mean nothing, surprises me"!!  So yesterday I popped the first 3 vitamins and took at least one day "off" about 180 days to come....hee hee

At any rate....sorry to rant for a day.  I too had tried a blood pressure med. Unfortunately, for me though, with my vertigo the lowering of my blood pressure totally accentuated my dizziness and the doc. pulled me off of them.

Do you have any trouble with dizziness?  That is very interesting that you have noticed a pattern to your headaches.  Are you still able to function pretty well at work? BTW...I was wondering, I know you are a realtor...do you think that stress was impacting you greatly with everything that was going on in the housing market when your headaches started? I know stress was HUGE for me.....huge!!

Hope you have a nice 4th holiday.....nice and as "headache-free" as possible!!

Take good care and hope to hear from you soon.

Krista 

Posted 8/2/2009 11:16 PM (GMT 0)
Well, I just passed the 10 week mark of being off of Ambien and although I had hoped that by now I would be back to normal, I am not.(see my earlier posts under jcommerce or jake) I still have almost constant headaches and actually believe Ambien may have caused some sort of permanent damage. I have been through the gauntlet of tests with two neurologists and my latest one has had me have additional MRIs, CT scans, and a spinal tap. I was on varapamil for the last month to see if lowering my blood pressure would help...all it did was give me severe constipation. The only thing, and I mean ONLY thing that's giving me any relief is Midrin. However, Midrin is an acetominophen based drug, which is very hard on the liver and can cause rebound headaches if taken in excess, therefore I am limiting my use of the drug and suffering with pain in the meantime. I am starting a 5 day treatment of prednisone tomorrow morning. Prednisone is a steroid based drug and I'm not looking forward to it, but I'm willing to try anything at this point.

I am 7 months into having constant headaches and, although I am not getting used to them or feeling any better, I have to start accepting the fact that I may have to live the rest of my life with constant pain. It is incredibly depressing and it's really taking a physical and mental toll on me. My social life, my work life, my home life, my recreational life, etc. are all being greatly affected by this horrible ailment. Plans for marriage, having kids, trips, goals, hobbies, etc. are all onn hold indefinitely.

I am hanging on by a thin thread....
Posted 8/3/2009 11:58 PM (GMT 0)
Jake,

PLEASE, keep in mind that MOST importantly you still have that "thread" to hang on too.

I, as you know as well, have been to what it seems was to be life in constant hell and now....almost 16 months later and am just "coming back".

I lost my job, missed out GREATLY on many events and time with my kids, and have put my engagement on indefinite hold due to what I blame on these headaches dragging me to where I'm at today.

Point being...I'm getting better, day bay day, and now, I need to "start" over.  The problem isn't the "pain" any longer....it's climbing back up that ladder again to finding the person I "USED" to be before I was sick.

I may not ever know the "why's, when's, and what's" of just how it is I got so sick for so long and now that I am finally getting better I'm alright with not knowing the answers. 

Jake....I'm sure you know the old cliche' of "it takes time"...in my case, I guess that's what it took. Albeit, a lot of time...as what yours is taking. But hang onto that thread tightly....and never...ever lose your hope!! 

Posted 10/23/2009 6:22 PM (GMT 0)
It turns out that my constant headaches over the last 9 months were not caused by ambien as originally suspected.  I'm finding out that they are most likely the result of my TMJ disorder.  The nightly teeth grinding and clenching finally manifested as constant, chronic headaches.  I posted many times earlier in this thread about the full on gauntlet of doctors, medications, etc. I tried and from which I found no relief.

However, about a month ago, I awoke with a ver sore, bruised-like feeling on my right temple and I had a broken back molar.  This gave my physical therapist the insight he'd needed and he recommended I see a TMJ specialist.  I have since met with a TMJ specialty dentist and have been fitted for a mouth splint which I wear nightly and just last week I flew to San Diego to get Botox shots in my massater and temporalis muscles.  The Botox takes about 2 weeks to start working, but it should give my jaw and temple muscles the break they need.  I am starting to see chinks in the armor and I would say that the last 10 days or so and, even though a few have still been bad, I wouls say that are among the best days I've had in almost a year.  If you have chronic headaches, I highly recommend you look into TMJ disorder as being part or all of the cause.

Posted 2/16/2011 1:33 AM (GMT 0)
Hi Jake

I've been suffering for headaches for a while now and came across your post. Mine have been slightly diff from the part that my headahces started in Nov 2009 lasted till April 2010 and went away with no doc knowing what caused them in first place and what treated them all together. The time they got ok was coz of the medicine Tegretol/Carbamazepine 3x200mg/day.

 

They started again Nov 2010 and I've been as miserable as ever. Have seen any and every doc from Neurologist to Headache specialist to Acupuncture to Physical Medicine with absolutely no results. As ofcourse they started me on Tegretol earlier this time since we thought that is what treated me last time. Till date it has not worked and docs have no idea what to do. I've tried various medications including anti depressants, NSAIDs, Epilectic meds, Migraines and nothing seems to work. One drug that does help a little bit is Tramadol but that somedays I get lucky that it does and other days it doesnt.

 

What is unlike in my situation compared to any of yours on the post is that I can sleep ok. I hardly ever wake up in the middle of the night or any time bcoz of headaches. My headaches generally start within an hour or so of being up.

 

latest my neurologist also talked about Botox injections and from your last post I notice you tried them - did they help? Did your headaches go away?

 

Thanks

Posted 2/16/2011 8:32 AM (GMT 0)
What specific medications have you tried (can you list them)? It's really interesting that the tegretol worked. That's not something that's commonly prescribed for migraine. It is however prescribed for neuralgias.

A drug that is very similar to tegretol is trileptal. It may be worth a shot.

Many people get very good results with botox. I didn't, but I understand I'm in the minority in that regard. If you do decide to try botox, the practitioner is hugely important. Use one who has a lot of experience using it in migraineurs.

Were is the pain? Does it start somewhere and then travel?
Posted 2/16/2011 8:05 PM (GMT 0)
Before getting to Tegretol I had tried a strict dose of 10 vicodins a day for 3 months, Reglan along with Ativan, Maxalt, Imitrex, Nortryptoline, Topomax, Valproate, Etodolac, rest I probably dont even remember.

 

My pain is primarily in the forehead area along with the top of the head. Until about a month ago I had a lot of pain in the back of the head which would tire my neck a lot and I would have to lie down every now and then to relax my nexk muscles. For that I also used a neck patch which didnt work but Flexeril would help for short term. I did do physical therapy for about 2 months or so which didnt help but my neck pains have gotten ok for now. I also developed Vertigo in between all this and took some travel sickness medications which got me off it within a week but headache still staying strong.

 

There is one strange thing with my headaches this time around which is i've a lot of involuntary eyebrow movement every now and then which is fairly visible to people around me and is really embarassing. My neurologist has no clue about it and is hoping its all headache related.

 

I saw a headache specialist in UCSF and he increased the Tegretol dose to 6x200mg a day which started a lot of vomitings and nausea along with headaches so I had to take that down abck to the 4x200mg dose which made me realize its not at all working. The recent one to my list of medications is protryptiline.

 

Posted 2/17/2011 5:47 AM (GMT 0)
The botox may help with the sore neck and the headaches, and should certainly help to stop your eyebrows from twitching. I wonder what could cause that. It's pretty perplexing.

Like I said, it's really surprising and interesting the tegretol worked. I would talk to your doctor about trileptal. It's very similar to tegretol, but usually has lesser side effects.

Have you ever tried gabapentin (neurontin) or pregabalin (lyrica). These are sometimes used for migraine and certain neurolgias. Your symptoms sound much more migraine/headache like than neurolgia like, but maybe in your case their is some pathophysiological cross over?

It seems like you've been on most of the major migraine preventatives, except for the beta blockers. Have you ever tried propranolol or metoprolol?
Posted 12/30/2012 10:25 PM (GMT 0)

Jake,

I'm 25 and 4 months into a headache that sounds almost exactly like yours. Only difference is that I would describe mine as also having super intense photophobia. Like you, the pain free moments can be measured in minutes, not days. It is a constant and terrible headache.

On your last post you suggested TMJ. I will look into this today. Did your headache problem ever quit? Was TMJ the problem?

Posted 11/4/2013 8:12 AM (GMT 0)
i have had a really bad headache non stop for 4 months . I wake up with it and go to sleep with it. I learned to deal with it untill now .. i really think there is something more than just a headache . I get dizzy light headed and always tired .. the pain is top front of head a back lower by back .. im starting to see blur .it is really starting to affect my every day living . I seen one dr who said it was sinus but took pills for that and didnt work . Another that said it was infection took antibotics for that and no diff. Should i go ti hospital and get cat scans .. the moment i woke up balling cause the pain and the feeling i was dieing and leaving my children behind is the moment something is wrong and i need help
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