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Old 01-27-2004, 12:57 PM   #1
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mek918 HB User
Angry 6 month 24/7 migraine - please help!

Hi,

I desperately need someone to tell me they have experienced something similar to this. Sorry if it gets long but I don't want to leave anything out.

I have seen a neurologist (MS clinic where they did MRI of brain and spine), headache neurologist and neuropthamologist. They all think I'm having some kind of atypical migraine/facial pain.

The MRI I had in February of last year showed a small spot - however neither neurologist thought it was anything to be concerned with. A CT scan in August concerned my primary, and neurologist compared with it previous MRI and said it was the same spot, nothing to be concerned with. Yet sometimes I'm still just terrified.

Current headache is sinus pressure-like. I wake up with it, and it never goes away. More of facial pain than head, although frequently my forehead and temples hurt. It's a feeling of pressure and numbness, particularly behind my eye. The pressure gets so intense as the day goes on that I feel like my head is in a trash compactor. I've also seen eye doctor countless times and all is normal. I have been to the ER on several occasions and was given steroid/painkiller injections but they didn't help.

It as not AS intense as it was back in July thanks to xanax. I don't know why that helps, but so far it is the only thing that gives me any relief at all.

I actually had sinus surgery last year bc I was convinced I was having chronic sinus infections (I used to...). After surgery I felt great for two months. But then this headache came on, which is different from past headaches, and aside from two Weeks in early December, it has never let up.

We have tried:

All triptans
all painkillers, including Actiq (morphine)
zoloft/wellbutrin/paxil
decongestants/expectorants
acupuncture
chiropractic/massage
Short course of Depakote - but I was having problems with that.
IV of magnesium

I've tried diet - no dairy, no sugar to see if that makes a difference and it does not.

One thing of note - I went of Birth control pills after 12 years in February. But my doctors don't think this is hormonal.

We have not tried topomax bc I am trying to get pregnant - they are convinced that I will feel better. I hope so, but in the meantime the wait is just so difficult.

Last week doctor gave me an IV of ketamine. Apparently, it worked! But I don't remember anything - can't really live like an amnesiac!

I used to have severe neck/back pain which was thought to be fibromyalgia by some docs but not all. Well, since the headaches started in January, I no longer have back/neck pain. Which is why my pain doc things there may be some kind of problem with the pain mechanism in my brain.

I don't know if I am making any sense here, but I just feel like I'm going to lose it. I only take small amount of the xanax daily and it gets me by okay for now. But my whole lifestyle has changed. ANY alcohol - even a few sips, makes things 100 times worse. I almost never go out anymore bc work takes everything out of me.

Oh - heat and ice do help.

Sorry for rambling. I just wonder if anyone has similar experiences or thoughts.

 
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Old 01-28-2004, 11:12 AM   #2
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sweet28 HB User
migranes

hi I was reading your post...I also suffer from migranes about two months ago they took a MRI of my head...The doctor told me that everyone has something in the back of their brain that is supposed to be in the middle of your head and mine is going to the right side of my head....They also told me I have a sist under my right eye she said its nothing to be worried about...so she sent me to a neurologist...When I got there he said nothing about the situation he just gave me some pills to start...I need to take them everynight they are called amitripytline I don't know if you ever tryed those..They take about two weeks to start working they do work pretty good I used to get these really bad migranes that lasted so long I was crying with the pain...I would have headaches everyday...This month I only counted 4 headaches and they were not that bad....He also gave me another kind of medication for when I do get a migrane he gave me Almotriptan they work really good to....maybe you can ask your doctor about these medications if you havent already tryed them.

 
Old 01-28-2004, 11:55 AM   #3
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Karla HB User
Re: migranes

There are a few things that you said that make me think you may suffer from cluster headaches. One of them is that alot of the pain is behind your eye. Many people who suffer from clusters are often misdiagnosed as having sinus trouble. Most people who suffer from cluster headaches are eposodic meaning they will get 1 to 8 headaches a day every day for several weeks up to 2-6 months. Then they will just quit only to return at the same time next year. Some eposodics suffer from 2 or 3 shorter cycles during the year. But they occur at the same times every year. The headaches occur at the same time every day. They last from 15 min. to 4 hours. It will feel like one big headache but what it is Is a low level ha that quickly becomes a 10 then after 15 min. to 4 hours latter it will die down to a 2 or 3. It feels like it never really leaves but you can tell you are suffering from different ha by the peaks and valleys. Alcohol will set off about 90% of those who suffer from ch into an immediate attack. Most people suffer from the ha at night but not all. You may want to do a google search for cluster headaches. There is an online support group that has a quiz you can take to see if this is what you suffer from and also a ton of info on medicines to try and ways to relieve the pain and suffering. Good luck and I hope it isn't clusters.

 
Old 01-28-2004, 02:49 PM   #4
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mek918 HB User
Re: 6 month 24/7 migraine - please help!

Thanks for your replies. No, definitely not cluster headache. It never goes away - and it gets progressively worse as the day goes on. No peaks and valleys (aside from not being as bad when I wake up in the morning).

I tried small doses of amitryptiline in the past but one day may try it again. Since I'm trying to get pregnant right now, I'm in a bit of a bind.
Xanax is keeping me sane through all this and I will keep taking it until I know that I am pregnant. At least it doesn't build up in your system.

So, so frustrating.

 
Old 01-28-2004, 04:54 PM   #5
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hereforyou HB User
Re: 6 month 24/7 migraine - please help!

I sometimes wonder if my migraines may be sinus related. For me, the triptans work, however I take them all the time. I am currently on amerge twice a day. My neurologist is trying to break my daily migraine cycle. I also take neurontin 1200mg a day and in a few weeks I will be at 1800 mg. I also take naproxen if needed. I just had a CT of my sinuses today and for the most part it was normal with the exception of a moderately deviated septum and the left ethmoid infundibulum not open. Incidentally, my headaches are always on the left side. One reason I believe that my left sinus contributes to the triggering of my migraines is the fact that usually it is the only side that gets congested. Also, sinus are generally open air spaces and I know I'm up for a headache if a low pressure system is moving into the area. Also, I cannot drink alcoholic beverages, esp wine. Bright sun will also get me.

QUESTION, does anyone know if sinus problems can cause migraine or does anyone experience this sort of problem. Right now I have a slight migraine and my left sinus feels itchy.

thank you!

 
Old 02-01-2004, 03:51 PM   #6
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Re: 6 month 24/7 migraine - please help!

Your headache sounds like ones I get... but I have arachnoiditis, inflammation in the arachnoid meninges of my brain. I have had ha's go for 2-3 months with no break, that get worse through the day... feels like soneone has my head in a vice.
Also similar to duragesic withdrawal ha's... I currently have one... 4 weeks now and no break... and I was told to take nothing for it.

My best to you, may you find some relief soon.

 
Old 02-04-2004, 08:08 AM   #7
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mek918 HB User
Re: 6 month 24/7 migraine - please help!

Thanks....how did they diagnose that?

 
Old 02-11-2004, 12:33 PM   #8
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Re: 6 month 24/7 migraine - please help!

I had a migraine/tension type headache for seven months myself about 5 1/2 years ago. I never really had headaches up to that point and any I every got would dissapear with 30 minutes. Then one day I got a headache that would not go away. First went to see my usual internal medicine dr. I had an MRI done and it was ok. I think I tried elavil at first and I kept using ibuprofen or aspirin. Relief didn't come fast enough and I started becoming more depressed and anxiety through the roof. I began to have panic attacks. I kept reading about headaches on the internet and started to worry about aneuysms. Everytime my headache go worse I would panic and think I was about to have a ruptured aneurysm. I was referred to a neurologist who I asked to have me scheduled for an mra to check the vessels in my head. I think he said to keep up with elavil, I became impatient and we tried a couple others like serzone (had a bad reaction) and prozac which I could tolerate now (took it in the past with no problems). No relief so this neurologist got me into see someone who was supposed to be a headache specialist. I remember him continuing some pain killers I had and scheduling me for physical therapy to help. Nothing worked and he got tired of me and said he couldn't help me anymore. He was jerk and I found an article by him on the internet where he said the worse thing for someone to take with chronic headaches was painkillers. Painkillers like he kept telling me to take. Finally I went back to one of the first neurologists I had seen who for some reason I thought was probably not that good. I don't know why I thought that, his office was expensive looking, etc. It turned out that he was the one to help me. With chronic headaches he hospitalized patients and gets them off pain killers and other bad analgesics. (Aleve is one of the better ones that is less likely to cause rebound headaches). He took me off ativan I was using for panic and replaced it with low dose xanax. They were supposed to administor dhe 45 intravaneously too because it has been shown to stop chronic headaches for months at a time. I although being very afraid of any medicine refused because I was scared. That first night in the hospital and not using anything for the pain was hell. I actually went through withdrawals like an addict. I had to be wrapped in blankets and was so cold. I shook for hours and felt sick. They had put a transdermal patch on me for the withdrawal. I then started on tofranil pm. He explained that this was another trycyclic antidepressant that would help stop headaches, work for chronic pain and help with anxiety and panic problems which he said was important to helping. They offered diet counseling and biofeedback too. Since I was too afraid to do the dhe 45 I checked out and went cold turkey on meds that helped with the pain. I kept up with everything else the dr. wanted me to do. I tried to exercise a little at a time. I decided to move somewhere else in town because I was happy where I was. Slowly things got a little better at a time. The headaches were still bad but less frequent. Then I would use 3 aleve but ony for really bad ones. I got tired of being afraid it was something serious and I was going to die. Slowly things got better then better. It is very hard emotionally to have a headache that long. I had read about people who had chronic headaches that committed suicide. I even began to think about it. But now I am hear to say that it can be beaten. You need the right dr., the right meds and most importantly the right mindset to beat it. I apologise for bad spelling, etc. I have to make this quick today and this is a condensed version. My dr. who helped me beat all of this was Dr. Ninan T. Mathew in Houston, Tx. He has an office in Dallas as well. Good luck and I will check in again.

 
Old 03-03-2004, 02:01 PM   #9
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Alayna HB User
Re: 6 month 24/7 migraine - please help!

Look up something called "sinus buster" on google. You might find it interesting. I have no affiliation with this stuff, it's just that it is helping my husband for the worst headaches. We've tried everything, and this is one of those things that has actually had some good effects. Good Luck

 
Old 03-13-2004, 11:40 PM   #10
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angels501 HB User
Unhappy Re: 6 month 24/7 migraine - please help!

hi,

my boyfriends also has migraines and they last 24/7 he has had 8 MRI scans
and has seen countless amount of doctors and nurologists and eye doctors
and they dont know what the problem is.sometimes i get so sceared because he is in so much pain and there is nothing i can do about it.the pain starts with really bad neck pain ,then stabbing pains above his left eye and then the headache kicks in.the doctors and nurologists have stuck him on epilim armatiriptyline amoxycillin codine and the list goes on.
epilim use to give him relief but i think he takes to many and all armatriptyline does is make him incoherrint.
when we went to see the eye doctors they said he had some enlarged veins in the back of his eyes but nothing to be concerned about,and for the last 3 months we have been to a accupuncture and he said he cant fix the problem because he has something wrong with his 1st and 2nd vertabra all he can do is relieve some of the toxins in his body.
at the moments nothing has changed the headaches are still painfull as ever so we are just taking one day at a time and i think if we dont come up with something soon he is going to go crazy.

 
Old 03-20-2004, 06:08 PM   #11
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texjoann HB User
Re: 6 month 24/7 migraine - please help!

I have migraines and get sinus infections too, so sometimes it is hard to find out which kind of headache it is until I go to the Dr.

Usually my imitrex stops the headaches, but when it doesn't work or the headache keeps coming back I go in, and the last few times, I have had a bad sinus infection. A couple of times they weren't able to actually tell if I had a a sinus infection until they did an xray. They do an xray through your mouth with your head tilted. They showed me the last time what it looked like. In the front of my face where I had the most pain the xray was white. It looked like I had a baseball in between my eyes. This was the infection, they told me. I had to go on anitbiotics for a month. Then get another xray. If at that time they would have seen more infection, or I still had symptoms I would have had to take more anitbiotics. They said most Dr's give you a week or two of antibiotics, but a bad infection takes longer to cure. Also they showed me how to irrigate my sinuses and now when I feel a headache that could be sinus related I irrigate and take over the counter sinus meds.

One way I can usually tell a migraine from sinus is that with migraine you want to put ice on your head and lie in a cool dark quiet room. WIth sinus you want to put heat on and it usually makes your nose run. I will also get in a hot shower and stand there a long time letting the steam build up.

The longest headache I had they put me in the hospital and did one of those dhe drips. Also in the ER they have given me a shot of toradol and benadryl together. They said they don't know why it works to stop migraines but it does.

I am followed by a neurologist for my migraines and was even on the study for imitrex before it was released to the public. So get a good neurologist. With my neurologist's help after a few years we were able to find the right combo of daily meds to prevent
me having daily migraines. I take depakote and verapamil twice a day, every day. I used to have migraines 24/7 as well. I would have maybe one or two days a month without a migraine. Some days I would wake up without one but it would come on before the day was over.

Good luck.

 
Old 03-23-2004, 05:34 AM   #12
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7 Bugsy HB User
Re: 6 month 24/7 migraine - please help!

Do these symptoms seem familiar to anyone ???

I've had severe headaches daily since Feb 1st. It feels like a centrifuge with a pulsating light in it is whirling around my head and it feels as if the air around me is heavier. I'm sensitive to light, dizzy and lightheaded. My whole head and neck hurts, not just one side. I generally feel OK when I wake up, but it usually begins about and hour or two later. My doctor feels it's migraine. I mitrex didn't help, neither did Zomig, but I've been on Relpax for the last 4 weeks and it's starting to work a bit faster, when it works, which isn't often. Maybe I'm getting better at recognizing the warning signs and taking it sooner in the pain cycle.

I'm having trouble getting more than 6 tablets at a time by prescription and my co-pay is $40 for a 3 day supply. I have a precertification request submitted to my HMO. I'll let you know how that goes. What are the dangers of taking Relpax daily ???

I would sincerely appreciate any suggestions.

Last edited by 7 Bugsy; 03-23-2004 at 05:37 AM. Reason: Format change

 
Old 03-23-2004, 12:20 PM   #13
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Katyana HB User
Re: 6 month 24/7 migraine - please help!

I used to get 24/7 headaches. I had all kinds of tests including CT scans.

Finally one day after about a year or more, I was at my dentists office and he started to ask me the most bizzar questions; rather he told me what I was experiencing. He wanted to know how I slept at night. If I woke up in the night for no reason. If I had headaches. Did the headaches go away. etc.

I was becoming paranoid that he had a camera into apartment, LOL

I told him that he was bang on and wanted to know how he knew all that. He told me that I grind my teeth and those are the classic symptoms of teeth grinders.

He fixed me up with a dental form that I wear at night and it cured my headaches.

I'm not saying that this is your problem, but it's worth going to get checked out by your dentist. Often times teeth grinding and jaw tightness is the cause of our worse headaches.


Quote:
Originally Posted by mek918
Hi,

I desperately need someone to tell me they have experienced something similar to this. Sorry if it gets long but I don't want to leave anything out.

I have seen a neurologist (MS clinic where they did MRI of brain and spine), headache neurologist and neuropthamologist. They all think I'm having some kind of atypical migraine/facial pain.

The MRI I had in February of last year showed a small spot - however neither neurologist thought it was anything to be concerned with. A CT scan in August concerned my primary, and neurologist compared with it previous MRI and said it was the same spot, nothing to be concerned with. Yet sometimes I'm still just terrified.

Current headache is sinus pressure-like. I wake up with it, and it never goes away. More of facial pain than head, although frequently my forehead and temples hurt. It's a feeling of pressure and numbness, particularly behind my eye. The pressure gets so intense as the day goes on that I feel like my head is in a trash compactor. I've also seen eye doctor countless times and all is normal. I have been to the ER on several occasions and was given steroid/painkiller injections but they didn't help.

It as not AS intense as it was back in July thanks to xanax. I don't know why that helps, but so far it is the only thing that gives me any relief at all.

I actually had sinus surgery last year bc I was convinced I was having chronic sinus infections (I used to...). After surgery I felt great for two months. But then this headache came on, which is different from past headaches, and aside from two Weeks in early December, it has never let up.

We have tried:

All triptans
all painkillers, including Actiq (morphine)
zoloft/wellbutrin/paxil
decongestants/expectorants
acupuncture
chiropractic/massage
Short course of Depakote - but I was having problems with that.
IV of magnesium

I've tried diet - no dairy, no sugar to see if that makes a difference and it does not.

One thing of note - I went of Birth control pills after 12 years in February. But my doctors don't think this is hormonal.

We have not tried topomax bc I am trying to get pregnant - they are convinced that I will feel better. I hope so, but in the meantime the wait is just so difficult.

Last week doctor gave me an IV of ketamine. Apparently, it worked! But I don't remember anything - can't really live like an amnesiac!

I used to have severe neck/back pain which was thought to be fibromyalgia by some docs but not all. Well, since the headaches started in January, I no longer have back/neck pain. Which is why my pain doc things there may be some kind of problem with the pain mechanism in my brain.

I don't know if I am making any sense here, but I just feel like I'm going to lose it. I only take small amount of the xanax daily and it gets me by okay for now. But my whole lifestyle has changed. ANY alcohol - even a few sips, makes things 100 times worse. I almost never go out anymore bc work takes everything out of me.

Oh - heat and ice do help.

Sorry for rambling. I just wonder if anyone has similar experiences or thoughts.

 
Old 03-23-2004, 03:43 PM   #14
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jacksinn HB User
Re: 6 month 24/7 migraine - please help!

I recently started corgard for my 24/7 headaches. I had- pain behind the eyes forehead and temples. Better in the morning and progressively getting worse as the day goes by often turning into a full blown migrane and having to take Maaxalt to relieve it. Corgard by the way is a blood pressure drug- helps to stabilize the blood vessels and has been very effective! Good luck!

 
Old 03-30-2004, 10:20 PM   #15
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kelker11 HB User
Re: 6 month 24/7 migraine - please help!

I have to agree with a previous poster about the dental device.

When I was twenty three, out of the clear blue, I started having headaches so severely and so frequently that I thought I must have a brain tumor. After countless trips to the doctors and a CAT scan, they finally concluded that it was stress headaches.

I suffered for almost 17 years with those "stress" headaches...some so severe they left me in tears. Nothing helped. I alternated between Tylenol, Excedrin, and Naproxen pain relievers, easily using around 150 pills a month. When I say I had multiple daily headaches, I'm not exaggerating. I frequently took twelve or more pain pills a day...and with Tylenol, I was taking the extra strength variety, six pills at the time. Nothing worked.

Then I started going to a new dentist...and she asked these questions:

Did I wake up with headaches? Yes
Did I have daily headaches? Yes
Did my pillow seem to bother my neck? Yes, I was changing pillows every few weeks.
Where were the headaches located? The most severe headaches were in the back of my neck...they were the hardest to get rid of. But they also appeared in the temples, the forehead, the top of the head and behind my eyes.

When she suggested the mouth guard for my teeth...I scoffed at the idea of me actually having a grinding/clinching problem...but she assured me I did. Reluctantly, I forked over the $300 dollars for the device. Within a week, half my headaches were gone...and within a month, I was almost headache free.

I can't believe for something so easily corrected, I had to suffer for 17 years. While it may not be everyone's problem, its certainly worth checking out.

 
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