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Posted 11/11/2011 5:04 AM (GMT 0)
missi182........I also am unable to figure out how to send a private message on this website. I belong to a couple of other migraine forums where that is possible. One of them can be found at: http://migrainepage.forumotion.net/. I am jewishmother there also.
Posted 1/30/2012 4:21 AM (GMT 0)
I'm back! Lol... First off, sorry for not responding for a while. I'll try and recap my events from my last post. Basically, I've seen the neurologist 2-3 more times, and still have these ridiculous headaches. (going on 10 months, I believe) He put me on citlopram, but I never took it. I read it can be a bit€£ to get off. That's actually half the reason why I came back to this site. What do you guys think of citalopram? any personal experiences here?

So my neuro and I settled on taking .5 Clonazepam (kolonopin), every night before bed. Remember, he still think this is all JUST bruxism! Lol The .5 did nothing so He upped it to 1mg. That's where I'm at now. Been on that for about 3 weeks. NO IMPROVEMENT! As of last weekend, I decided to add another drug to the mix. I assume I can't spell it out on this website, so I'll just call it Mary Jane. I've never been a smoker, but my wife suggested I try it. Smoked a little, took a clonazepam and went to sleep. Tried for a week and still NOTHING. (currently still trying it) (;

Almost forgot: I finally had an MRI done on my head. (with contrast) came out clean! You'd think I'd be happy about that, but it just leaves me with more questions. ): Don't get me wrong, I'm very grateful that there's no tumors, lesions, or anything crazy. Just wish I could find some sort of answer though. (ANYTHING!!) I've been at this since last march, and I feel like I'm still at square one. you'd think by now I would know my triggers, too. Nope... The headaches are so random for me. The only certainty is that I get one everyday, no matter what I do. Some days are better than others, but even on the 'good' days, the pain is still 4 out of 10. As I type, laying on the couch doing NOTHING, I have a 7 out of 10.

Another thing I forgot to mention... My neuro said my testosterone levels were a little low. He put me on testim, 5mg tubes a day. Been on it for almost 3 months. So not only do I have headaches everyday, I get fatigued easily. oh, and let me not forget to add my latest symptom! Acid reflux/GERD. lol though I think that's stemming from the clonozepam. Never had that problem until I started taking those pills. Or maybe it's the testim. Who knows... My neuro told me no way either of those would cause GERD. I ended up taking prilosec OTC, and it cleared up quickly. Just in case, though, I made an appointment with a gastro. (this Friday) I've always had stomach problems, so I figured may as well keep the appointment. Ever since I stopped drinking alcohol/ smoking cigs on a continual basis, (a couple of years, now) my bowel movements have never been the same. I used to go all the time, now its a struggle to have nice, smooth (you know what's) lol sorry. I literally drink pruin juice every day, in hopes it helps me out. It does help, but man I miss the old days of every day! Sad, and strange, 'cause I'm only 31. I know exercise would help out, but with little energy and constant headaches, it's tough to get motivated. (plus my job, and kid's softball team that I help coach)

Back to topic! My neuro told me (about 2 weeks ago on my last visit) there's nothing more he can do for me, and I'm to come back in 6 months. Said all his test he's run say I'm fine. ): so here I am, perplexed and very depressed about this. My next step is to maybe have a gluten test. My wife's idea, not mine. I've been leaning to checking out Botox, actually. Kind of scared though. Not a lot of info on that yet. Might have to go the citalopram route.... 'been trying to hold off taking that pill, but it's looking like that maybe my only hope. Hopefully it doesn't affect me like valporic acid and gabapentin did. That sucked! Plus, as I've already mentioned, I heard it's a bich to get off.

Thanks to everyone for your replies!
Posted 1/30/2012 4:24 PM (GMT 0)
Hello Gator,

Well i can certainly feel for you. I have been having continuous severe bilateral temporal headaches for twelve years now. I have tried every medication possible, done all kinds of treatments, seen many doctors, etc. and still no answers. I continue to search for something, anything that could help me and nothing yet. I live in Canada and there just doesn't seem to be the headache centers here like there are in the US. I have also tried botox no help.Like you all my tests are negative. I have had the tmj problems corrected, so they say, where a guard so if i clench there are no back teeth touching. Anyways my story is long and i still suffer.

I sure hope you can find some answers for yourself.

I wish there was more posting in this forum as well. There doesn't seem to be much moderation here nor support. Why don't you come over to the chronic pain forum, that's where i post a lot and there is a lot of support there.

Take care

Suzane

Posted 1/31/2012 1:46 AM (GMT 0)
Maybe I'll do that, thanks. You mentioned TMJ. The one thing I haven't tried is a mouth piece. (the expensive one) I tried the cheap walmart kind, but quit after a few days. Those kind are really only good for grinders, not clenching. I thought about getting the expensive one made, but I figured that there's just no way that's my main problem. I've taken 1mg of clonazepam AND Mary Jane for almost 10 days.... There's no way I'm still clenching throughout the night. I'm beyond passed out! Lol anyway, I'll try and browse that other forum.
Posted 1/31/2012 1:57 AM (GMT 0)
I'll watch out for you Gator.

Have you seen a dentist who specializes in tmj disorders? they should be able to tell you if that is part of your problem. What symptoms are you having? and where are your headaches? you can google tmj and you'll find a list of symptoms.

Sure hope you can get to the bottom of your pain.

Suzane

Posted 2/2/2012 3:11 AM (GMT 0)
Two dentist told me I definitley grinded in my past. My teeth show it. However, another dentist, (oral surgeon, another topic all together) said he thought that wasn't my cause of headaches. I went to him because I had a wisdom tooth infected, because food sometimes gets caught in the little flap of gum. He told me he could take it out, but only through surgery! Sigh...one of my bottom wisdom teeth is impacted, badly... Never bothers me until it gets infected. And that only happens maaaaaybe once every 5 months. Dentist told me to just put a plastic injector type thing, and spray some listerine or closine in the gap. (works every time) it's either that, or a $800 surgery. Lol anyway, yeah, I've read about TMJ. I do have a clicking noise in my jaw when I open it. But I have to open a little bigger than normal to get the clicking noise. It doesn't just happen from regular eating/ talking. It could be TMJ problem, but I'm highly skeptical. If it wasn't so expensive to have those things molded/made for you, I'd probably consider trying it. Actually, I take that back....would definitley try it. But $300 for something that isn't a sure thing, is crazy!

Post Edited (Gator4life) : 2/1/2012 8:14:57 PM (GMT-7)

Posted 2/24/2012 8:53 AM (GMT 0)
I'm back. Unfortunately, I'm still at square one. ): Not only are the headaches still here, but I'm constantly getting easily fatigued. Well, the fatigue thing has been going on for a few months now, but today seemed the worst. I sometimes wake up, despite an 8 hour sleep, and feel like I ran a marathon the night before. My legs are so tired it's crazy. I thought the testosterone medicine would help that, (according to my neuro my levels were lower than he'd like) but it did NOTHING. I'm seriously all kinds of messed up.

Went to the gastro to check on my constant constipation, and she said the same old stupid line: "eat more fiber". Really, 'cause I haven't tried that already. Lol I was literally drinking mirilax and metamucal for a month straight, and it didn't help much. Now I'm drinking special herbal teas. They make me go, but it's never smooth like it's supposed to be. Still constipated, for the most part. The tea takes about 8 hours to operate, then my stomach starts churning inside. Lol I get a few 10 minute intervals of pain, and then it usually comes flowing out. Sorry for the description. I miss the old days of smooth, soft passing stools that didn't require softeners etc... I bring this up because I can't help but wonder if there's any correlation with my other symptoms. It might be a stretch, but when you have been looking for answers for almost a year, you'll say/try anything. (like Mary Jane) wich, by the way, has done nothing for my headaches! I'm officially done with that experiment. Thank God too. I'm tired of feeling like an air head the next day. That's how it makes ME feel anyway. It's like the more I smoked, the dumber I got. At least now I know bruxism isn't the cause, as that was my original diagnosis. There's no way I'm still bruxing after taking a clonazepam and smoking, right before bed. I've literally woken up in the morning with my mouth wide open, dry as hell!

So anyway, I called my neuro and said the clonazepam helps me sleep better, but does nothing else for me. It darn sure doesn't help with the headaches. Since I don't see him for another 4 months, he (over the phone) prescribed midrin. Never heard of it, but I took it anyway. Let me just say, not only did it not help me, it made it worse. My headaches actually intensified! Lol

Guys, I'm honestly at a loss for words right now. I'm absolutely miserable, and I'm making my wife and family miserable too. I just don't know what else to do. I was told to check and see if I was gluten intolerant, but my gastro said I don't have diarrhea, so I don't need to bother with that. My main problem (gastro wise) is constant constipation, and a lot of burping/ some acid reflux at times. It's unbelievably stupid how a doctor would deny me a simple test like that. I was already getting blood work done for electrolytes etc ... Why not let me kill 2 birds with one stone?!? Nooooo, she told me we'll discuss that on my next visit. And also discuss possibly having a colonoscopy ( im only 31) and maybe an upper gastro endoscopy? I think that's what it is. I have a long family history of colon/rectal/ stomach cancer, so that's the thinking there.

Tomorrow I have an appointment with my family doc. Gonna ask him who I should talk to about my lack of energy every dang day. And also if he'll order a gluten test. Or maybe an allergy test. Who knows, right? Lol I'm so lost and confused it a joke!

It cracks me up...one general neuro tells me it's bruxism, and another tells me I have benign fasculation syndrome! Which, by the way, CAN cause generalized fatigue. My constant headaches, coupled with constant fatigue, has me leaning for disability. But I'd rather not go that route. That means I'm pretty much giving up; throwing in the towel. I don't know what's worse sometimes, the never ending headaches, or the not knowing what EXACTLY is wrong with my body. It's a good thing I believe in God, and I lobe my family as much as I do. Otherwise I may have done something to myself by now. (u guys know what I mean)

I still can't believe I took that dang horse pill (midrin) and it didn't even touch the pain. Going to wait to call my neuro and complain about it though. He's gonna get tired of ordering things for me. Lol
Hopefully next time I post here, it will be with positive news.

Post Edited (Gator4life) : 2/24/2012 2:08:08 AM (GMT-7)

Posted 2/24/2012 5:07 PM (GMT 0)
Just online for a few seconds cause my head not behaving but wanted to suggest that you go ahead and cut out gluten on your own.....the test isn't very reliable anyway......the best thing to do to check for celiac's disease is to eliminate all gluten for about a month and see if any of your symptoms improve. More later..........and thanks for posting and hanging in there with us. L
Posted 2/26/2012 8:18 AM (GMT 0)
Finally found something that works. Unfortunately, it's not something I can take over and over. I was at my parents house, when my mother offered me hydrocodon. Lol, she got it a while ago for post surgery on her knee. Anyway, I took two pills and it helped ease my pain. Problem is, it makes me light headed and foggy minded. Plus, there's just no way I can take those all the time. My headache is with me just about every day. Wich brings me to my next issue. I think my headaches are becoming more frequent. I used to get short breaks of maybe 2 days a week with little to no pain. Now it seems I get one pretty much every day! I just don't understand how this is possible. I literally have a headache just about every day, and sometimes the majority of each day too.. I don't remember what it's like to have a full day without any pain! Sigh...

Tonight I tried another midrin, but it was to no avail. It doesn't even touch the pain. My family doctor (last Friday) prescribed yet another stupid anti-depressant. He said it's more of a relaxer than anti-depressant. Starts with T...can't remember the name right now. I really don't want to start ANOTHER anti-depressant, but I have no choice.

One day, maybe, I'll come to this thread celebrating instead of complaining! One can dream, right?

Oh, and as for the gluten test, I'm trying to stay away from it, just in case that has anything to do with it. It's hard though. Lots of stuff have gluten in it!

By the way, march 15th or so will be a year I started getting these headaches. ): or close to it anyway.
Posted 2/27/2012 7:57 PM (GMT 0)
TO GATOR$LIFE: Hello, I just signed up with this site about an hour ago and your post was the first one I read. I do not suffer from headaches, it's my husband suffering terribly. You have the exact same symptoms as he does. He has suffered for 5 years with his headache being totally nonstop for nearly a year now. After going to our family practitioner several times and trying different meds my husband finally gave up for a long time. Then last year it had gotten to the point where something had to give. He had an MRI with and without contrast and both were normal in September. We were referred to a headache specialist out of state and when he saw the MRI CD he said "You have some sinus trouble going on in there. You have to be treated for this, if nothing else than to rule this out as the cause for your headaches." So we went to see the ENT dr and had surgery to clean the sinus cavities out. No help whatsoever. The surgery was in November 2011. We have seen the headache specialist every month since then. Starting in November, my husband began taking Verapamil, a migraine preventative. At first there was a slight change, but it only lasted a few weeks, so by the time January rolled around my husband waas taking the maximum dose with no change whatsoever. We saw the specialist again Feb 23, 2012 and he stopped the Verapamil and started him on Keppra. I researched this medication. The side effects are scary. My husband, we'll just call him Hubcap for the sake of privacy lol, just since he has started the Keppra on Friday morning has been extremely sleepy, nauseous, and weak. He worked 5 hours Sunday. He came home at 11:30 am and was asleep by 1pm and slept til 6:30 last night. I woke him up and he went back to sleep and sleep til 4 am this morning. That's not normal. Oh I also forgot to mention the headache specialist gives my husband plenty of Lorcet 10. He takes 1 on a good day, but usually 3 a day the pain is so bad. They're highly addictive and he cant take them forever. Hubcap has hit depression and that along with the constant pain affects not only his everyday life, but our kids and mine as well. I am by no means complaining, I just hate sitting there watching him hurt knowing there's nothing I can do to help take the pain away. The headache specialist mentioned last week sending us to Chicago to the Diamond Headache Clinic if the Keppra doesn't work. We live in the south. Financially, Chicago is not an option for us. We are now looking into seeing a different kind of dr. My husband is so scared that there is more to this than just chronic migraines, and I am beginning to wonder myself.

Probably nothing I've said here helps you medically, but please know that you're not alone. I know that it helps to talk to people who suffer in the same way we do, if nothing else but for comfort.
Posted 2/27/2012 8:48 PM (GMT 0)
Gator4life: oh i really do feel your pain!!! ive had a read of all ur past post's and im with you matey. its extremly frustrating isnt it! i also have had pain in my head for a year now, non stop and i just feel like im going insaine! just to read theres so many people going through the same emotions etc does help, to know were not alone. I was diagnosed with chronic daily migraine with visual distubance by my neurologist. I read about your tooth did you get this sorted? Just wondered as last time i visited my consultant i got chatting to a lady in the waiting room who also suffered with daily migraines and her migraines started from pressure from her tooth. Also ive been researching tonight, and aparently peeps who suffer with migraines are low in magnessium, might be worth getting some suppliments, ive ordered some today, if your like me you'l try anything and atleast they have no side effects. Have a look on internet it states on sites that it could help. I really do wish you every bit of luck.

jewishmother: :-) so helpful, brilliant advice
Posted 3/11/2012 10:37 PM (GMT 0)
just had my headaches cured last month with a cervical injection , seems that after a year and a half of constant headaches the doctor who was going to do an injection to cure a compressed nerve , looked at my mri and told me that he could cure my headaches , blah blah something about facet joints , i told him please do , and fifteen minutes later the headaches were gone and haven t come back , but i do still have occipital neuralgia , which is very evident now , thought that the neurologist was off , but turns out he was right on the money with that , actually , it turns out that all of the doctors were not really wrong , just wasn t seeing the right one , until now, anyway it is good to be drug free , hope it lasts , but you need a mri and a guy who does spinal injections to read it , because apparently no one else even knows how to spot a faulty facet joint
Posted 3/25/2012 8:07 AM (GMT 0)
@ my lovely,
thanks for posting. You mentioned supplements.... I read bananas can help with migraines. So I started eating one a day. And to me surprise, my headaches actually eased up a bit. (for maybe a week) I was so excited at the thought of finally being over this pain. I had a three day stretch of nearly no pain at all. However, it came back pretty quickly. With a vengeance I may add! Still eating the bananas, but that's only because I'm not a big fruit eater, so I decided to stick with it.

Metairieclark,

Thanks for the suggestion. I may have to look into that. Sounds kind of scary/risky. But I'll try anything, at this point. I had an MRI with contrast done, maybe a couple of months ago. All clear, according to my neurologist.

As of last night, I FINALLY gave in to trying another anti depressant. I thought I could get by with only the one mg clonazepam before bed. The headaches were some what better with that, but not enough to completely rid me of them. So last night I didn't take the clonazepam at all, and popped a trazadone 50mg (family doc's idea), instead. Doctor said I could take both, but I don't like to take too many pills if I can help it. I woke up feeling TERRIBLE. light headed, dizzy, out of it, BAD headache and of course the usual zero energy! I think the side effects this new pill has, coupled with stopping the clonazepam abruptly, is what did it. I mean I felt like garbage for most of the day.... Hoping my body adjust and accepts this new pill.

My next move is to try and tough it out for a couple of weeks on this new pill. If I don't see results (and I know I won't) then I'm going to call my neuro and ask him what other options I have. Like that injection Metairieclark described. That's it for now.... Time to go to sleep with my lovely headache!

Thanks to everyone for posting suggestions, or just sharing your personal situations. It does help... I'll be back to update any progress. (or lack there of) ):
Posted 6/12/2012 5:38 AM (GMT 0)
Quick update: still get headaches almost every day of the week! 'Been on one, 1mg clonozepam at night. I have no idea what I should do next. My next appointment with my general neurologist isn't until august, I believe. this is just flat stupid at this point. If it wasn't for my religion and my family, who knows where I'd be right now. Good thing I'm a man of faith.
Posted 3/7/2013 9:12 PM (GMT 0)
Gator4life, I know you haven't been on here for about 9 months, but I was wondering if you still have your daily headaches? I have read every single post of yours and was completely in awe. It was like you were saying my very own identical thoughts.  I would really like to hear from you either way. 
Posted 3/13/2013 8:40 AM (GMT 0)
Hi there, I have just been diagnosed with Basila Migraine, I realise now that I have had them for a while, I have been miss diagnosed numerous times with Dr's telling me it was to do with my Vestibular, but they were wrong, but no one seemed to work out what was wrong with me. Went to ENT, had MRI, CT scan, blood work plus lots of other tests, did not have a diagnosis. Finally saw a General Physician who asked all my symptoms that I had;They are Dizziness, Nausea, Loss of sight or blurred vision, ringing in my ears, no energy, slurred speech, loss of balance, pain in my head down the right side across the forehead & in the back of my head at my neck. The Dr did lots of tests, checked my MRI etc & told me that I had these Basila Migraines. Dr prescribed Epilim 100mg, I had to start on 1 a day for 10 days, then 2 a day for 10 days until I was on 3 a day. I have been taking the meds but so far have not helped..... yet, hope they help soon. The Dr said they were a preventative, so I am hoping once they are in my system I will feel better & be back to my usual self. I have also lost a lot of weight over the past 6 months or more as I have felt to sick to eat much, but I am trying. I used to play sport at a high level for many years so I find that it is so debilitating to be feeling so crap & I just want to get better. Does anyone else have these symptoms & how have you gone on medication. I hope someone is able to reply & let me know how they manage with this chronic pain.

Looking forward to some replies, Thanks
Posted 3/14/2013 6:49 PM (GMT 0)
Just a note, I don't see anyone with daily headaches mentioning "chronic daily headache syndrome". My new neurologist was finally very blunt with me. He said that's one thing I have and that I have to stop taking Vicodin (for the headaches and back pain I have). He said that's where my migraines have come from! Great, I did this to myself. ANY pain med over time causes rebound headaches (even tylenol and Ibuprofen) so you end up taking it all the time to relieve pain....start more pain, take it again and on it goes. I was lucky. I had really bad migraine which the Vicodin doesn't even begin to touch for pain so I didn't take any at all. Once I was off for 4 days I figured I might was well go on. No more for me. Now I don't have daily headaches! I do have migraines that have developed in my late 50's. I'm on Depakote and about to add botox to the mix. I just went a whole month without a migraine! that's was great. I know my husband was happy! But, I would rather get the Depakote away and just do Botox but the Neuro says no.
Posted 3/15/2013 2:10 PM (GMT 0)
Hi everyone.. As you all can see I'm new to this forum but not new to this pain... I've been diagnosed with migraines since I was about 16 yrs old, I am now in my early 40s and the pain has gotten worse. Over the last couple of years, I would say at the beginning of 2008 they have reached what I am told is chronic migraine-tension headaches, this causes severe debilitating daily headaches.

I literally feel like taking my head off and leaving it somewhere and pretending not to know it's owner!!!

Like most of you I've tried everything under the sun and then some!!! Still no relief is in sight... I'm truly sorry to see so many people suffer from this condition as I do, but my heart is lightened to know that 1) I'm not alone and 2) I'm not crazy!!!!

The company I currently work for do not believe that such a condition exists so they have decided to send me to a series of doctor of their choosing. However, as we all (migraine sufferers) know they all come to the same conclusion!! (Hmmmm.... go figure).
This of course does not help my situation (painwise).

Any how I'm once again trying to get a handle on this daily chronic pain, because like most of you, my life has changed dramatically!! I do not go out.... only work and home!!!

It is excessively difficult to constantly have this pain. I go to bed with it (hardly sleeping) and wake up with it!! There must be some way to get it to stop or at least not be so intense!!!

I look forward to hearing from you all...
Posted 3/20/2013 6:58 AM (GMT 0)
Well I'm back. Still have the headaches. They're not as bad (not as often), but they still hit hard as ever. I also still get fatigued easily. For example. If I go out and do yard work for a couple of hours, the next day I'm just about worthless. Even if I don't do yard work, I sometimes wake up with legs that are tired. It's been two years, this month, that all this started. And through all the tests, the only thing I've come up with, is I think I'm not getting good sleep. I mean real sleep. Maybe I'm not hitting all stages of a normal sleep pattern.

Had a talk with a lady that had a sleep study done. She said there are FIVE stages, one of which is where your muscles regenerate. (If that's the right word?) heal maybe? Lol anyway, that's the only thing I can think of as to why I wake up feeling like I ran the Boston marathon. I would have a sleep study dome, but my insurance doesn't cover it. It's very, very expensive.

As for the headaches, I'm now taking mirtazapine 15mg before bed. Well, I was taking 15mg. It was giving me such bad reflux, I had start cutting it in half (7.5). Been good ever since. In conjunction with that, I also take 1mg clonazepam. It, originally, was 2 mg. however, I cut it in half, as it was making me too forgetful. Yes, forgetful. Reason being, I'm also taking another drug with it. (Grass) not a lot, just a little before bed. I NEVER take more than the day before. I don't want to be some freaking addict. Oh, and I also take those natural lights sleeping pills by unisom. Only one a night. They're all natural, so it's all good. Still, that's a lot of crap to be taking.

But when you're in pain every day of your life, what else are you going to do? I love when people say, "it's just stress, learn to relax a little". Ok, I'll get right on that... Lol I will say this, I'm trying something new out. I've been a cheek biter for years now. I think I may have started it when I quit smoking years ago. Anyway, for those of you that don't know, it's basically the same as biting you're nails, anxiety wise. Maybe I'm reaching, but I'm wondering if there's a connection with that and grinding my teeth, from time to time, while I sleep.

So my battle wages on, still lost as ever, trying to find an answer. Not a cure, just an answer... Ok, maybe a remedy too. Lol

Post Edited (Gator4life) : 3/20/2013 1:02:46 AM (GMT-6)

Posted 5/5/2013 3:30 AM (GMT 0)
Hi Gator4Life! I came across your thread by accident. I hope this. I am a disabled vet, TBI, a picture of my CT scan at https://sites.google.com/site/myvetissues/ should give credence to my pain claims. I have had headaches since that injury 25 years ago- constant pain, varying only in intensity. I have tried countless meds and not many helped. Even the ones that helped stopped working after a while, regardless of increasing the dosage eventually they become useless. Recent Veteran Affairs experience with TBI has helped me to some extent. From my experience:

1. Percocet 10/325 puts the pain to a very reasonable level. I usually take Perc 10/325 with a strong aspirin pill, sort of Excedrin+Opiate.
2. Vyvanse makes pain during work days always bearable, but I can still feel the headaches.
3. Codeine tends to always kill the pain, but only at high dosages that instead hurt my guts. I don't even try that anymore.
4. Propranalol is a strange one. I think it was originally for high blood pressure, but off-label use has found a few new benefits. It can help some headaches and for some time it can help aphasia.
5. Zoloft is good for depression, which can cause headaches, and also directly on headaches.
6. The only med I have found that is guaranteed to stop my headaches is Duragesic. It is a patch placed on a hairless patch that must be replaced every two days OR every three days. The med in the patch is fentanyl, it is 50 times more powerful that morphine. The patch releases the pain med slowly. The stuff is a wonder, but I am not currently using Duragesic patches, because :
1. User MUST, MUST take metamucil on a regular basis or constipation to the point of hospitalization can occur.
2. Duragesic patch requires replacements every 3 days on a different hairless location than the previous patch. Since it is a class C drug you can only get one month supply which is 10 patches. But up to 15% of users need to replace the patch every 2 days, on the third day for those people the patch stops holding back the headache and brings about unpleasant side effects until the patch is replaced. My doc has given me scripts for 15 Duragesic patches per month; I had incredibly mild headaches when using Duragesic.
3. Duragesic can cause very shallow breathing in bed at night, especially at night. Your partner might even call 911.
4. The name-brand Duragesic looks like a think bandage 1" x 1" x .125" with a clear bubble containing fluid on top. The organic version is as thick as a sheet of paper, almost clear plastic. The name-brand is great. The generic version sucks.
5. Duragesic makes you mellow. When you lay in bed for the night, sleep is almost immediate and nothing else matters. If you are married or in a long-term relationship Duragesic will cause "marital" issues.
6. Duragesic is available at 25, 50, and 100. A newer, smaller version of Duragesic at 12.5 is available. I will give that a shot soon. I hope to find a low-level painkiller that decreases pain enough to only need Perc 5/325 for breakthrough pain.
Gator, please feel free to ask me for assistance. Pain sucks.
Posted 5/7/2013 4:34 AM (GMT 0)
Justanothervet,

First of all, you are NOT "just another vet"! Every vet is a hero in my book. Anyone who risks their life for me is a quality human being. Thank you for your service to our country. Also, thank you for your response. I read it all, and I must say that's quite the experience you had. Talk about trial and error.

My headaches are still around, every dang morning. It's like clock work... Still taking the same meds as my prior post of a few months ago. I found that, after a few months of this ridiculous cocktail of pills and grass, I'm becoming more and more forgetful/zombie like. Nothing too worrisome, but enough to hinder me at work. (And with the wife)
Anyway, I'm dealing the best I can. I have an appointment with my neurologist very soon. Haven't seen him in months. This visit is going to be very interesting, as I'm going to really lay into him. (Nicely) lol I just can't go on living like this. (Not implying anything!) just that my quality of life, at times, (lots of times) SUCKS! Getting random headaches and feeling tired/drained all the time gets old. I mean, it's been two freaking years!

I just don't get it. I'll do yard work for maaaaaybe an hour. The next day, my legs are worthless. I have to drink a ton of coffee to get my body kick started. (I've never been a coffee drinker) these two symptoms just won't go away, no matter what I do. I wish I could afford a sleep study... That's my last bit of HOPE. Though I've said this before (and was denied), but I think this might be the answer to my problems.

Thanks again for your reply, thx to everyone else too. I'll be back...
Posted 5/12/2013 9:43 AM (GMT 0)
^
Hi there

I just stumbled upon your thread and I actually think your case is interesting..
I'm a med student who apparently also a migraine with aura sufferer. I had my episodes for the first time around april/may 2012. it was so bad that I lost partial eyesight and vomiting over and over again when I had attacks (it was around 2-3 attacks a day and one attack last about 1 hour, so frustrating). I then came to one of my teacher, a neurologist, and then he put me on depakote er 500 mg once daily. I took it for about 9 months. on the 2nd months my attacks were decreasing, to only once a week and then after 6 months only once-twice a month. but the attacks were still there, the painful headache were also still there. I cant function whenever I had attacks and theyre just plain annoying.

after taking depakote for 8 months, I got tired of it and consulted my doc to just drop the med. but soon after I stopped taking depakote, waves of migraines coming back, so I took it for another month. while taking the med, my teacher suggested that i go on a migraine diet.

I took a look at your posts and (maybe I skipped?) but I think you havent try this one? well the diet is basically avoiding all the things that might trigger the migraine so your neurons wont fire too much signals. so I went home and read some medical journals along the way, read some books, and so on. fortunately, it works wonder for me. I had no migraine episodes for about 4 months now and still counting.. as long as I'm faithful to my diet, things were good, lol

the main foods you should avoid are alcohol, monosodium glutamate, caffeine (coffee & tea, I prefer the decaf one, but sometimes drinks tea since it's not a trigger for me), peanuts (and all the things that ends with 'nut' like hazelnut and so on), cheese, chocolate, processed food (sausage, salami, smoked beef), anything that's smoked, salted food (food that are preserved in salt), soda, anything with nitrate and nitrite. and also, use little less salt in you food.

fresh foods are okay, milk are also okay but not cheese, also no chocolate milk. no peanut, meaning no real peanuts nor peanut butter.

it felt terrible for a whole first month since I only eat things that was home cooked or things I bought from restaurants that I trust not to use those ingredients. but well, things were getting good. I had no more severe attacks, just occasional mild headache I can cure using paracetamol. I really cut off those foods and feel a lot better now. no more moping days or dysfunctional days because of the migraine. (p.s. it sucks because I can only eat tuna pizzas or mushroom or salmon pizzas with no processed meat and no cheese). but it was worth all the sacrifices.

maybe you should try it? I hope it works on you :)
Posted 5/24/2013 2:12 PM (GMT 0)
I am new to this forum and just read some of your posts. I have been suffering from chronic migraines for 15+ years. Everyday-All Day. I too have been to 3 different neurologists with no help. I have tried all the "migraine" drugs, Botox injections, chiropractor, etc with little success. I do not recommend a Neurologist. Mine tells me to meditate and pray and says I have exhausted all migraine drugs with no help. Recently I went to a TMJ dental specialist and he recommended getting a mouth appliance and going for physical therapy. At this time I had not only my usual migraine but my jaw and neck were killing me. I found some relief with the physical therapy and the fitted mouth appliance has worked so that the intensity of my migraines are down. First time ever. I would suggest a Pain Specialist for Migraines. I am going to John Hopkins Headache Center in August but I sent in my paperwork for approval in December (that is the earliest I could get an appointment). I rarely if ever had headaches until after my 6th sinus surgery, but they can't find anything wrong in my MRI/CAT scans. I think it has to do with scar tissue and pressure on my nasal passages. They have evolved over time to become more than sinus migraines and the back of my head neck radiates pain. I'm at a point where I am having to realize I will have this pain for the rest of my life there is not much they can do.   And it has affected all aspects. Jobs, relationships, friendships etc. I get moody and irritable and just want to tune everyone and everything out and sleep. I also have trouble sleeping and am taking prescript ion sleep pills just to sleep more than 3 hrs at a time. I have been taking these for about 10 years, my psychiatrist prescribed them. Keep pushing for answers.
Posted 5/27/2013 3:37 AM (GMT 0)
i dont know if ive been on this thread but i have had headache all day every day and migraines all day everyday last month and finally got relief
turns out its Lyme and Babesia. there is a lot to learn about it. the test is a western blot, screens are not of value mostly false negatives.
im finishing week 3 of mepron for the babesia and i havent had a migraine since day 3. before that i was at the ER every week with an IV of pain meds and barf meds..
headache, migraine, insomnia, constipation, nausea, bouts of sweating, fatigue... ect ect ect
free movie "under our skin" is a doc about how bad it can get.
hope u find your answer~
natalie
Posted 5/27/2013 3:49 AM (GMT 0)
oh, plus head pressure (babesia), anxiety, muscle soreness or weakness, brain fog or memory issues or other cognitive malfunctions.. stiff neck, joint pain, even sore soles of the feet in the morning.
you sound like you have a lot of symptoms. which really does sound like mine, a lot.
ive been going thru this nightmare for almost 3 years. 3 years with a headache and migraine. i have been on the verge of suicide from the pain.
i was misdiagnosed with chronic daily headache, migraine, fibromyalgia, possible bruxism, insomnia, depression, anxiety, postpartum depression, bla bla bla bla... and no meds help, not really. i have been on ALL OF THEM, and done the nerve block shots, botox, hospital stays with DHE45, NO HELP
cause it is lyme...
i HAD TO get my own western blot done, the best lab is Igenex. the most simple basic lyme test they have. i had to do ALLLLLL the work and research myself, for the last 3 years!
i never remember ever seeing a tick on me, no rash, no nothin, totally not symptomatic for 6 years then all of a sudden the symptoms started piling up with the unignorable constant headache.
ok, my rant is over
natalie
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