Full head migraines

[crz4mm2]

Migraine sufferer here for YEARS. I started at puberty and have had them ever since.

Mine progresivly worsened a few years ago until I was having them almost every day and started getting the "aura" or warning blindness prior to the pain starting. The first time it happened I thought I was having a stroke. I could not read part of the license plate in front of me (and I was driving!).
I was placed on Inderal for suppression, and it worked for several years. When it started getting bad again (break thru headaches) then I went to a doc and had all the tests done which were neg. I then tried neurontin and hated the way it made me feel. I then tried Topamax.... It was a Miracle cure. BUt it made me stupid (dopamax is the nickname). I could not remember certain words for things and people's names. VERY bad. The doc and nurse told me that wold improve as time went on and it did get better, but not all the way.
I had been on Topamax for a few years (maybe three or so) and have only had an occasional headache. I used to take Relpax if I had a break through headache and now take Treximet. It works very well.
I ran out of my Topamax about 1 month ago and had to go afew days before my pharmacy was open again (over the holiday/weekend) and when I had made it through without a significant headache, I decided to try and go without it.
I have had one aura that I treated with treximet immediately and it did not develop into a full migraine! I figure if I can treat the individual headaches (and they are NOT recurrent) then I will not start on the Topamax again.

It is a horrible, debilitating thing. People who have never had a migraine, have NO idea how horrible it is.

 

[CathrynRose]

Yep, I know exactly what you mean. For instance, even though I already knew of cluster headaches, once you mentioned it I HAD to look it up (again) and started to worry what If I get one?! I just had to stop reading. The other night I wasn't feeling well. I had a headache then nausea, for the second night in a row. Well I had myself convinced I had a brain tumor and I was sure I was going to die within months.

As sucky as it is for you, Im glad to hear I'm not alone. I can google symptoms like nobodies business!

Ive had several brain tumors in the past few years or so....at least I was convinced of such. I think it was either last week or the week before, was my most current one.

Sadly I can't take most migraine medications because they contain too much sulfa, which I'm allergic to. The over the counter stuff doesn't touch my headaches. I'm such a freak. **sigh**

If it were me - I would ask your DR for a narcotic prescription pain killer. It took me years to FINALLY find a DR who took me seriously and gave me a stinking pain killers, that work.

Like many posters mentioned, its hard to find a DR to take your pain seriously.



Does anyone wanna hear my brain tumor - within seconds of death - emergency room story? Anyone with a hint of hypochondria will appreciate it.

 

[onelilspark]

Not all Dr's are familiar with Migraines and some medical professionals will make you feel like a junkie. Try to not let this get to you, I know its tough but most people have no idea what its like so its best to just ignore them. I've walked into Er's and been offered morphine instead of a Neurologist, which I refused after pointing out I had no-one else to drive me home and DUI was a bad idea More recently I accompanied a DF with bad migraines to a local ER where they stuck us in a room alone & ignored for 3 hrs before I had to leave her alone and get my kids off the bus, she was later admitted. It seems that if you are under the care of a Neurologist they will treat you much better so a consult with someone who takes a special interest in Migraines is probably a good place to start - after you get that MRI done. When you call your family Dr tell him/her the Urgent Care Dr felt you should have had an MRI, Dr's don't like looking negligent.

I'd like to hear how it goes from there- good luck

I know what you mean! I was soooo lucky when I was first diagnosed to have a doctor who knew what migraines were all about and took an 8 year old seriously!! I mean, most doctors 15 years ago especially, would have just dismissed an 8 year old, luckily I had a doctor who knew the right questions to ask. All I could tell my parents is that my head hurt, they gave me some Tylenol and then I would puke Then I'd go to bed for 6 hours, wake up at 2am and be starving (I'd have to skip dinner) wake my poor mother up to make me a grilled cheese. I can't say it enough: I'm so glad I had a doctor that knew what was going on.

Thanks everyone! I'm feeling better now that I'm not just having some freakish headaches. I was on Topomax until this past summer. I can't have it with one of my other medications.

One thing I have figured out is that I switched my birth control pill to Seasonique in August. Since then I've had 3 full head headaches. One on Sept 20, Nov 29 and yesterday. Larry pulled up some stuff on Seasonique and it says it can cause changes in migraine patterns.

So tomorrow I'm going to call my doctor to see if I can switch off of the Seasonique and drop Neurontin for Topomax again. Topomax is supposed to help you loose weight too but it never did for me. Maybe it will this time. I take the Neurontin for my Firbomyalgia and it helps you gain weight.

I've had headaches ever since I can remember. I've had some last 3-4 months at a time. But the intensity of this one was so much more and that's what scared me so bad. Twice I've had hydrocephalus so when I start getting frequent headaches I worry about that again. But the Topomax is a mild diuretic and it will keep the fluid from building up if that is what is starting again.

Sadly I can't take most migraine medications because they contain too much sulfa, which I'm allergic to. The over the counter stuff doesn't touch my headaches. I'm such a freak. **sigh**

I lost 25 pounds this past year while on Topamax. That being said, I also had to go through all those other yucky side effects. The other big side effect for me is that my fingers tingle a lot, but I talked to my doctor about that and she said that its up to me if I want to continue with the medicine. I would rather have tingly fingers than a pounding head!!

Does anyone wanna hear my brain tumor - within seconds of death - emergency room story? Anyone with a hint of hypochondria will appreciate it.

I'd like to hear it!

 

[CathrynRose]

It's kinda sorta headache related - not really, more 'brain tumor' related.

It's long - so kick back.....

So having daily headaches, I always think the worst and am always googling 'brain tumor symptoms' (I know them by now - headache worse in the morning, nausea, vision disturbances....see? I know them! But Im getting off track.....)

SO, I go into work, and it was a slow morning, and I started plucking my eyebrows. Then I look at my eye - and my right pupil was SIGNIFICANTLY larger than the left one. It still responded to light, but the size difference was just incredibly different.

So, I started Googling (the hypochondriac's worse enemy) and....well, see for yourself. Google it. It's BAD!

I start pancking - mind you, I am at work. My co-workers know by now, Im a paranoid mess when it comes to anything, so they try their hardest to keep me calm. I go into my bosses office and just start SOBBING, like sloppery, blubbering mess (my boss is a very nice woman....) My coworker slides an index card under her door "David Bowie has 2 different sized pupils" I swing the door open - BUT MY PUPILS ARE NORMALLY THE SAME SIZE!!! I say....

I tell them I have to leave, I have to go home. Im in full panic attack mode now.

I go home - and google some more. "When one pupil is larger than the other, and hour could mean life or death" it says.

I go to the Emergency Room. My husband is out of town, working. Everyone who isnt a freak like me, is at work. Im alone at the ER.

They shuffle me in there like this *snap* - which scares me more. Everyone has been to ER's - you could be bleeding from your eyes, and you still sit and wait hours. Not this time - Im in the back within minutes, and off to the CAT scan, seconds later.

I get back from the CAT scan, and MRI is waiting for me!! Theyre rushing like Ive never seen. This is making everything worse (in my head!) Im dying, they know it! Im sobbing, blubbering, and just a mess.

The Neurologist leaves her station and meets me in the MRI place, as Im waiting for my turn. This has to be terrible!!! Look how quickly theyre doing things!! I AM DOOMED!

I get the MRI - which, when they tell you not to open your eyes, dont. I listened for awhile, and then opened them. Bad idea. Now, I am facing death AND worried about being stuffed in this little tube.

I get back to the waiting room. This is all within an hour of getting there. I mean QUICK!

The nurse comes in, ask's how Im doing - Im a mess, Im demanding to know the results now! Where are my results??? Where is the DR??? Why dont we know whats wrong, yet??? She asked if I had anyone to come sit with me there, and I didnt. Like I said... normal non psychotic people were at work. She promised me, as SOON as she knew ANYTHING she would come back and tell me.

Im waiting - sobbing - thinking of my kids growing up without me - sobbing - wondering who will be at my funeral - and.... you ready????????











IN WALKS THE CHAPLAIN!!!!!!!!!!!!!!!!!!!!!!!

I yelled at her "WHY ARE YOU HERE?!?!?!?!?!!?"

She said, calm down, calm down - the nurse said you were alone, and I just came to keep you company. I thought she was there to tell me I had 15 minutes or so and was there to read me my last rights!!! It's a BAD idea to send a Chaplain in to keep a hypochondriac company.

Long story - not short at all..... they found nothing wrong. But they did all these scans and such - and since my pupil still reacted to light (even though it was bigger, it would contract to light.... just bigger) they didnt have any real reason. But again - they scanned everything. And just from being there - my pupil started to return to almost normal.

About a week later - my right eye was itchy (I seem to have allergy issues, but only in one eye at a time) and I went and used my anti-histamine eye drops.... and wouldnt you know it? That eye pupil got bigger.

I used eye drops that fateful morning, pre- ER / Chaplain visit. I just didnt even think about it.

SO for any Hypochondriacs, you are not dying if you use anti-histamine drops and one pupil gets bigger.

ALSO - this all happened like 5 months after my mom died - which probably had a lot to do with the MEGA FREAK OUT I had.

 

[onelilspark]

Oh geez! That's quite the story. I probably would have been freaking out if they worked that quickly in the ER!!! And then send in the chaplain

On another note: Can anyone tell me more about cluster headaches??

 

[Disney Ontario]

I know as soon as a headache starts, I have to take something for the pain(I don't leave home without anything) If it gets bad enough, I take another Tylonal and gravel,usually get sick,can't lay down.I sit on the side of the bed and have to rock my self side to side until the gravel kicks in then sleep it off.zzz. Also I find if when we head out in the afternoon on long trips I am probably over tired and one hits me then.
We are heading to Disney in march,driving, DD20 and I make sure we have our wrist bands on Knock on wood, they have worked so far.

 

[chell]

Oh geez! That's quite the story. I probably would have been freaking out if they worked that quickly in the ER!!! And then send in the chaplain

On another note: Can anyone tell me more about cluster headaches??

That was something else! WOW! Sounds like something I would have done.

I'd like to hear more about cluster headaches too.

 

[chell]

I lost 25 pounds this past year while on Topamax. That being said, I also had to go through all those other yucky side effects. The other big side effect for me is that my fingers tingle a lot, but I talked to my doctor about that and she said that its up to me if I want to continue with the medicine. I would rather have tingly fingers than a pounding head!!

Oh yeah, I forgot about the tingling. I'd much rather have that too.

Right now I'm on Neurontin for my Fibro but it isn't doing a thing for the Fibro or my head. Sorry if I've already told you that.

All day today I've felt like I'm here but not here. I've made a million typos which isn't like me.

My husband has been so great. He is terrified of scooping the litter box but he did it yesterday. That was the first time he has ever done it. He does everything else so I've never asked him to knowing his fear.

 

[chell]

I know as soon as a headache starts, I have to take something for the pain(I don't leave home without anything) If it gets bad enough, I take another Tylonal and gravel,usually get sick,can't lay down.I sit on the side of the bed and have to rock my self side to side until the gravel kicks in then sleep it off.zzz. Also I find if when we head out in the afternoon on long trips I am probably over tired and one hits me then.
We are heading to Disney in march,driving, DD20 and I make sure we have our wrist bands on Knock on wood, they have worked so far.

If I feel one coming on I can usually take a Maxalt MLT or Frova - depending on where the pain is and how it starts. But when I wake up with one there is nothing I can do.

I forgot who mentioned narcotics but Saturday morning I had 2 codeine pills and they didn't touch it, not at all. I'm a freak when it comes to meds. Some just don't touch me.

 

[CathrynRose]

I forgot who mentioned narcotics but Saturday morning I had 2 codeine pills and they didn't touch it, not at all. I'm a freak when it comes to meds. Some just don't touch me.

I mentioned Narcotics.

Codeine is the bottom of the Narcotic barrel, though. Theyre pretty much useless, IMO (when it comes to Migraines, for me)

I have an RX for Vicoprofen.

 

[dismom2]

It's kinda sorta headache related - not really, more 'brain tumor' related.

It's long - so kick back.....

So having daily headaches, I always think the worst and am always googling 'brain tumor symptoms' (I know them by now - headache worse in the morning, nausea, vision disturbances....see? I know them! But Im getting off track.....)

SO, I go into work, and it was a slow morning, and I started plucking my eyebrows. Then I look at my eye - and my right pupil was SIGNIFICANTLY larger than the left one. It still responded to light, but the size difference was just incredibly different.

So, I started Googling (the hypochondriac's worse enemy) and....well, see for yourself. Google it. It's BAD!


PS: OP---I have had whole head migraines, but rarely. Most of the time mine are one sided. Not sure why they change sometimes. I do get visual disturbances and sensitivities to hearing and sight when I start to get any migraine.

I start pancking - mind you, I am at work. My co-workers know by now, Im a paranoid mess when it comes to anything, so they try their hardest to keep me calm. I go into my bosses office and just start SOBBING, like sloppery, blubbering mess (my boss is a very nice woman....) My coworker slides an index card under her door "David Bowie has 2 different sized pupils" I swing the door open - BUT MY PUPILS ARE NORMALLY THE SAME SIZE!!! I say....

I tell them I have to leave, I have to go home. Im in full panic attack mode now.

I go home - and google some more. "When one pupil is larger than the other, and hour could mean life or death" it says.

I go to the Emergency Room. My husband is out of town, working. Everyone who isnt a freak like me, is at work. Im alone at the ER.

They shuffle me in there like this *snap* - which scares me more. Everyone has been to ER's - you could be bleeding from your eyes, and you still sit and wait hours. Not this time - Im in the back within minutes, and off to the CAT scan, seconds later.

I get back from the CAT scan, and MRI is waiting for me!! Theyre rushing like Ive never seen. This is making everything worse (in my head!) Im dying, they know it! Im sobbing, blubbering, and just a mess.

The Neurologist leaves her station and meets me in the MRI place, as Im waiting for my turn. This has to be terrible!!! Look how quickly theyre doing things!! I AM DOOMED!

I get the MRI - which, when they tell you not to open your eyes, dont. I listened for awhile, and then opened them. Bad idea. Now, I am facing death AND worried about being stuffed in this little tube.

I get back to the waiting room. This is all within an hour of getting there. I mean QUICK!

The nurse comes in, ask's how Im doing - Im a mess, Im demanding to know the results now! Where are my results??? Where is the DR??? Why dont we know whats wrong, yet??? She asked if I had anyone to come sit with me there, and I didnt. Like I said... normal non psychotic people were at work. She promised me, as SOON as she knew ANYTHING she would come back and tell me.

Im waiting - sobbing - thinking of my kids growing up without me - sobbing - wondering who will be at my funeral - and.... you ready????????











IN WALKS THE CHAPLAIN!!!!!!!!!!!!!!!!!!!!!!!

I yelled at her "WHY ARE YOU HERE?!?!?!?!?!!?"

She said, calm down, calm down - the nurse said you were alone, and I just came to keep you company. I thought she was there to tell me I had 15 minutes or so and was there to read me my last rights!!! It's a BAD idea to send a Chaplain in to keep a hypochondriac company.

Long story - not short at all..... they found nothing wrong. But they did all these scans and such - and since my pupil still reacted to light (even though it was bigger, it would contract to light.... just bigger) they didnt have any real reason. But again - they scanned everything. And just from being there - my pupil started to return to almost normal.

About a week later - my right eye was itchy (I seem to have allergy issues, but only in one eye at a time) and I went and used my anti-histamine eye drops.... and wouldnt you know it? That eye pupil got bigger.

I used eye drops that fateful morning, pre- ER / Chaplain visit. I just didnt even think about it.

SO for any Hypochondriacs, you are not dying if you use anti-histamine drops and one pupil gets bigger.

ALSO - this all happened like 5 months after my mom died - which probably had a lot to do with the MEGA FREAK OUT I had.

I almost died laughing while reading your post!! Probably because I can relate on some levels. I have been known to google symptoms myself!! The Chaplain----that is too funny!!!!

 

[NotUrsula]

Has anyone ever heard of or had an Optical Headache?

My boss got headaches often - and only had one of those - but it scared the cripes out of her. Apparently they dont really hurt - but you basically go 'blind' for 15 minutes or so.

She was super embarrassed as she was at a business dinner, and got one. She had heard of them, as her sister had, had one before, so she knew what was happening.

It's actually called an Ocular Migraine. Different people see different white patterns; mine is a series of zig-zags like old TV's used to have after signoff, but my sister sees a white cracked-ice pattern. Most regular migraine sufferers get the pattern as an "aura" before the pain kicks in, but some people just get the pattern with no pain. I get it both ways; if I'm at home and able to relax immediately I might just get the aura, but if I'm in a stressful situation the pain usually hits within about 10 minutes. When I just get the ocular version it tends to last about 20 minutes, and I lose my vision to the right of the center line.

I have a tendency to get ocular migraines most often while driving at night (lucky me!!). They are triggered by the flash of oncoming headlights in moving traffic. Once I ended up in slow traffic behind a school bus that had a STROBE mounted above the emergency exit! I was in agony within 5 minutes, and it was another 30 before we crept past an exit so I could bail out of there.