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[killermigraines]

Hi,

I'm Stephanie, 31 years old and I live in Manchester, England.

I came across this forum while searching for information about the treatment of chronic severe migraines (like mine) using Effexor (Venlafaxine). I have at least one, sometimes 2 migraines a day, every single day, that have been going since 2003. They have not responded to 7 or 8 different migraine prophylaxis meds. I use Gravol for the nausea, and sometimes it helps the pain. I use an abortive like Imigran extremely judiciously - rarely.

I just saw a new neurologist today, who suggested trying Venlafaxine as a migraine preventative. I noticed there's a whole separate forum on here about it. He's also suggested Botox injections every 12 weeks, but I will need to see a different neurologist (a higher-up one) to be evaluated for them. Another idea he had was noritriptyline, but we're going to try the Effexor first. The referral got put through today. I asked for the note about the Effexor to be given to me directly so I could take it in person to my GP in an emergency appointment today and get the prescription filled.

I also have severe depression that is caused by this constant, severe pain. My doctors know that I have daily suicidal ideations, but we're all pretty sure I won't do anything (otherwise I would have done it already). I think about it at least once a day, but I don't plan on doing anything, and the idea of actually doing something makes me feel sick. (OK: sicker than I already feel!) I've told docs repeatedly that the motivation behind these thoughts is just to make this pain stop.

Pain-wise, I never get anything below a 7/10 on the pain scale.

I can no longer work consistently, and I've had to halt my graduate studies of Russian language. When I get bored and can't have my mind occupied, I feel more depressed, so I've been trying to do Russian on my own, but I can't keep to any kind of reliable work schedule, which is upsetting because I've always been an A student. I sell my knitting and spinning through my Etsy shop, and on really bad days, knitting or spinning yarn while lying flat on my back in bed is all I can manage.

Thanks for reading.

[DarkRain]

Welcome to DF Stephanie, I know how bad migraines can be as I get them also, although mine are called optical migraines. I hope you can find some solutions for pain management. It sounds like this is really debilitating for you.

[killermigraines]

Welcome to DF Stephanie, I know how bad migraines can be as I get them also, although mine are called optical migraines. I hope you can find some solutions for pain management. It sounds like this is really debilitating for you.

Hi DarkRain,

Thanks for answering so quickly. Yes, they are extremely debilitating. The neurologist today - the first thing he asked about and we spoke extensively about - were the auras that I get.

Optical migraines - are those the ones with visual auras that may or may not be accompanied by pain? I get those, though not as frequently as the type with just pain. Seeing stuff that intellectually I know isn't there can be really terrifying.

My pain is primarily in my eyes. I've seen more than one neurologist before this, including a neuro-opthamologist. My congenital obstructive hydrocephalus and shunt (both tied off because they overdrained) have been completely ruled out as a cause of the headaches, through CT scans and ICP monitoring this past February.

Edited by killermigraines, 26 June 2012 - 12:00 PM.

[DarkRain]

Hi DarkRain,

Thanks for answering so quickly. Yes, they are extremely debilitating. The neurologist today - the first thing he asked about and we spoke extensively about - were the auras that I get.

Optical migraines - are those the ones with visual auras that may or may not be accompanied by pain? I get those, though not as frequently as the type with just pain. Seeing stuff that intellectually I know isn't there can be really terrifying.

Yes, I have auras all the time, I usually get pain and nausea afterwords and if you don't recognize what it is it can be quite scary, especially when it takes over your vision. I've had ones that were so bad I couldn't see for a while.

Edited by DarkRain, 26 June 2012 - 12:03 PM.

[killermigraines]

Hi DarkRain,

Thanks for answering so quickly. Yes, they are extremely debilitating. The neurologist today - the first thing he asked about and we spoke extensively about - were the auras that I get.

Optical migraines - are those the ones with visual auras that may or may not be accompanied by pain? I get those, though not as frequently as the type with just pain. Seeing stuff that intellectually I know isn't there can be really terrifying.

Yes, I have auras all the time, I usually get pain and nausea afterwords and if you don't recognize what it is it can be quite scary, especially when it takes over your vision. I've had ones that were so bad I couldn't see for a while.

My mother gets a sort of kaleidoscope in her vision before migraines, or what she's described as a "hole in her vision". I've seen flying spots, gotten a funny taste in my mouth, thought my tongue was blowing up (to the point that it made me speak oddly even though the tongue felt normal to touch), and had the sense that even when my husband is cuddled up next to me, he's actually about a football field away. At those times, I grab onto him.

(My husband has fibromyalgia, so we've learned to monitor each other and remind ourselves to take meds. Often, when I see spots and I tell him, he'll prod me to take an Imigran.)

Gee, I guess I ought to get my butt over to a different forum on this place, eh? (By the way, I'm Canadian. That was where I saw the first neurologist, and then a neuro-opthamologist.)

[LibraryLady]

Hey there! I really relate about the headache pain, although mine is not diagnoised, yet. I've suffered from headaches for years but mine is not migraine. I've had all kinds of tests, sleep apnea tests, MRIs, Cat scans, etc.

So, I'm with you about how depressing constant pain is! Ugg!! I'm glad you found us! I hope your meds can help. Right now I take Tramadol and Hydrocodone. I've tried several migraine meds, but they don't work with me. I think usually you are supposed to take a migraine med when you feel the onset of a migraine. Well, I have no onset! My headache is constant, day and night. It's usually about a 5 but can spike up to a 10 (or above!)

I still work full-time as a librarian, but it is really hard sometimes to get up and go to work and make it all the way through the day. I also have a partime quilting business with my sister, and I get behind on projects because when I get home from the library my head usually hurts so badly, I can barely focus my eyes!

So, welcome to the forum!

[Girly]

Welcome to DF killermigraines, it is good to have you here with us. I feel your pain, I've had a lot of headaches in my time too. When my Mental Health is suffering the first symptom is headaches. They used to make me sick most days, they are under control now for the most part, although I had a couple at the weekend.
I hope you find DF useful.

Girly

[Allie747]

Oh, how I feel for you! I won't go into all the details of myself and the medical problems I've had, but have they ever tested you for a congenital heart defect called PFO or ASD? I will tell you I used to be a lot like you, found out after very specific (but easy) testing (because of my migraines) that I had this condition, which is basically a hole in the heart that everyone has prenatally, but some people's don't close naturally after birth like they should. A common sign of this condition is a lot of migraines. I had mine repaired with a device that is fed through a vein in the leg, no open heart surgery. It is usually a 45 minute procedure. I had no idea I had a heart condition before this test, always perfectly normal exams in regard to my heart. I'm not trying to scare you by mentioning heart issues as a possible cause, but if that is the problem, some people end up with no more migraines after having this fixed and most people end up with greatly diminished headaches and no other adverse conditions. I don't know your medical system and protocols there, but if you can, talk a heart doctor into doing an EKG "with bubbles" there, just to make sure this isn't the cause of your migraines.

[LibraryLady]

Wow Allie, that is great information! My Psychaiatrist recommended I go to a neurologist and I'll be sure and remember what you've said when I meet with him/her!

Thanks!

[Allie747]

Hi again, LL. Apparently a lot of people have this condition and don't even know it. It is rather a "new" discovery how many people suffer from this congenital (born with) heart defect and go through their whole lives without knowing, even when they start having problems from it later on. It is just attributed to other things. It was a fluke I found out.

You and I sound very similar btw. Similar in age, background and health issues in a lot of ways.

Everyone, find something, even if just one little thing, to be grateful for. I love the beautiful scenery I am surrounded by in this state I live in. it helps get the mind off the pain. Sometimes, when the pain is really bad, you have to work at it.

Oh, BTW Killer (I just had to call you that, no offense intended. Sometimes I would like to call myself that when I think of my past abusers, but just metaphorically. It has to do with the type of therapy I am doing.) Where was I? BTW, I find, after all the medicines I've tried (just about all of them), what works best for my headaches is ibuprofen and a caffeinated drink like Coke, Pepsi or the like. The faster you take it when you first notice one coming on, the better. Also, if you overmedicate, you can get "rebound" headaches which can be as bad as the first. I hope this helps.

Wishing you a speedy recovery. There is nothing like illness to get in the way when you are already depressed, is there?

[LibraryLady]

I have also read some stuff about rebound headaches. I have a book at home (suprising that I would have a book, eh? LOL!) about headaches that I found pretty interesting. I can't remember the name of it but I'll look at it again tonight and post the author and title. I think you should be able to find it at your local library.

I'm sitting here right now with my headache! I just took a Tramadol and a Hydrocodone to just knock the edge off. Sigh.

[LibraryLady]

It took me a bit to find this thread again, but I managed it! The book I am talking about is:

Heal Your Headache: the 1-2-3 Program for Taking Charge of Your Pain, by David Buchholz, M.D. I am rereading it to see if there's anything I can do for myself. I've gone through the 3-step program before and it did not get rid of my headaches, but as I recall they were not as bad.

I'm having a severe headache right now. Can't focus my eyes very well, dizzy, sick stomach, and really intense stabbing pain all around my forehead and at the base of my skull.

What did I ever do to deserve this??!!

[Allie747]

Nobody deserves it, but hang in there. I will look for that book as any thing that can even take the edge off is worth it. (((hugs)))

[LibraryLady]

Your local library should have it. If not, ask them to get it for you on an Interlibrary Loan. I think it is a very worthwhile book!

Thanks for the hugs!

[Allie747]

Thanks, and more (((hugs)))

[killermigraines]

I'd never heard of that heart problem before.

[killermigraines]

Oh, and good news: I'M NOT INSANE!!!!! The freaking out every morning, according to the doctor, is an entirely expected side effect of my Effexor (the fency-schmency term for this is "agitation". It feels more like bats***-insane-please-shoot-me-now-************). So she gave me 2 weeks' supply of Diazepam, and I see her after that for a status check. She said it will ease off after about a month on the Effexor. I'm just coming up to 2 weeks being on it. Can't we make time move any faster??????? Although I haven't freaked out in a few days thanks to the Diazepam, my appetite is toast. I'm making sure to drink enough water, though.

[Allie747]

Hi, KM,
I have made two replies to you so far, but keep pressing the wrong button and losing my post. ~ sigh ~ Just what a depressed person needs. At any rate, I'm glad they are finding some things that are bringing you relief. I wish I could make time move faster. Are they assuming the diazepam will get your anxiety under control enough to pull you off of it entirely? And that you will get all your appetite back? It is tricky, finding that right balance, isn't it?
Keep letting us know how you are doing.

[LibraryLady]

Thanks for the update KillerM,

I'm glad your Dr figured out what was going on! Now you just have to hunker down until your meds level out!

We are here for you, so keep posting!

[Gangling]

Hi,

Just on the topic of migraine's and pain...this post peeked my interest (let me know if thee is a better place to move this to)

I relate to so many things in this post...

- I have frequent pain from all over my body and sometimes pain whos origin is not obvious. It's difficult however, in my case, to identify which begets which and it's even possible that I have a combination between Bipolar Depression and pain induced depression.

- I used to get the "coleidescope" form of migraines like Killermigraine described, the "hole in the vision" is the worst, but I have never gotten the head-ache side of a migrain

- I have a fairly uncommon visual disturbance called "Palanopsia". All doctors know about it is that it acts like a hybrid between Migraines and Seizures. It creates a "after shadow" effect where ever you look so that after a while your whole vision is clouded by shadows of objects that you have been looking at. What is interesting about this, is that I have noticed that it increases with severity when I am depressed. Once I started to take medication, it went away but with more serious bouts of depression it over powers the meds. The meds helps but it also serves to confuse the issue even more, seeing as the medication (Tegretol) is both a anti-epileptic and a anti-depressant, so come medication review time it really gets messy with all the other anti-deps, anti-pain, anti-inflam ... etc :P

- Being typically Marfanoid, I have "Mitral valve-prolapse"...basically a floppy heart valve that causes back wash. This mixes things up even more due to the fact that, amont other things, it causes me fatigue. I still don't understand how my psych says it doesn't affect my brain function though...if the blood supply is having problems, surely it must cause problems up stairs due to poor oxygen/nutrition supply... * shrug *. Oh yeah... then there's the Beta blockers that I need to keep my blood pressure as low as possible that pushes it right down to 70/100... Getting up too quickly is a trip!!

Any way, thought I'd share my experience with pain & depression.

Now, if I can just figure out what came first...the chicken or the egg!!

[LibraryLady]

Hey Gangling, I know some of my depression is due to my constant pain. I've tried everything to figure out why I have headaches, but so far I still don't know. I have a severe headache right now. On a scale of 1 to 10, it's about a 7. I have to function every day with pain like this. Sucks!

[Gangling]

That would drive any one nuts...even me. There is really only two kinds of pains that actually registers with me (the rest just lulls around in the background)...Headaches and Toothe-Aches. They stop my thought processes dead in theyre tracks.

Most of the time, I don't even notice the constant "background" aches and pains...but I also don't notice the affect it has on me. The problem is I still expect my self to be able to do what others does and to function "normally". Without 12 hours sleep I am useless and anything above 10kg's is a serious no-no. Not only because my knees are shot to heck and gone but it could literally, like one of my friends described so elequently the other day, "Make my heart explode"...lol. It's hard, when passers by give you a rude look for parking in the disabled bay yet you have no "visible" disabilities. I usually end up not having the guts to face them...parking miles away from the shopping centres front door and ending up with hellishly inflamed and painfull knees & back for weeks.

I guess all of these things eventually adds up...but the Manic episodes also confirms the BP presence (Not to mention the temper outbursts back when I wasn't on meds).

I grew up thinking that pain was "normal"...go figure :P

[LibraryLady]

Gangling, I'm sorry you have to deal with all that pain, and being stigmatized as well. I have that problem, I have a disabled tag so I can park in disabled parking. I know when people see me they think I"m just fat and lazy. I'm embarassed, but I have to park close to the building and save my energy. The pain in my back gets pretty severe if I walk too much, and it has nothing to do with my weight. It has to do with Rheumatoid Arthritis and three messed up discs in my back!

People will always make assumptions about others based on what they see. We can't do anything about that Gangling. We just have to keep on with the Good Fight! (((Gangling)))

[Allie747]

That makes me sooooo angry when people make assumptions. One time I was at Yellowstone Natl park where there was a big lack of parking at one of the sites. At the time I had mobility issues so bad I had to use a wheelchair. We were "hovering" around the disability parking, same as another car, but he was waiting for any open site. (he also looked about the same age, or younger.) When we got one of the handicapped sites, the first car yelled out his window "yeah right" because we were only in our thirties at the time, and didn't look "old and unable." Then he saw my husband get my wheelchair out of the back and he took off in a hurry, never to be seen again.

I don't usually use even a wheelchair anymore, and don't even really need a cane unless going a long ways (for me) but I always make sure I bring it because of the "looks" I get if I don't. Oh, if we could only trade places, even for one day.

[Gangling]

We recently had a newspaper article about two Metro Police officers who parked in a disabled parking. A guy in a wheelchair ordered his driver (driving a disabled transport service bus) to block them in. When the disabled man spoke to the two police officers, they just laughed. After a while a black man came by and actually accused the disabled man of being a racist as the police officers were black and that if they were white he wouldn't have said anything...

This world is going somewhere...and it's not in a handbasket, it's in a tin can...

[killermigraines]

Hi, KM,
I have made two replies to you so far, but keep pressing the wrong button and losing my post. ~ sigh ~ Just what a depressed person needs. At any rate, I'm glad they are finding some things that are bringing you relief. I wish I could make time move faster. Are they assuming the diazepam will get your anxiety under control enough to pull you off of it entirely? And that you will get all your appetite back? It is tricky, finding that right balance, isn't it?
Keep letting us know how you are doing.

I'm nibbling on various things, so I think I'm getting enough food in. I'm back on the diazepam today after a major panic attack this morning (first one in a few days). They are infuriating because I can't snap my brain out of them. The theory is that after i've been on the Effexor long enough, the panic attacks/agitation should calm down on its own as my body gets used to the medication.

The good news, as DH pointed out, is that because I'm reacting emotionally to it, it's obviously having some kind of effect on my system - just not yet necessarily the one we want. My GP said that perhaps since it's helping the headaches, we might be able to increase the Effexor dosage once the panic stops (or at least becomes less frequent) - thereby having a stronger effect on the headaches.

Edited by killermigraines, 12 July 2012 - 04:50 PM.

[Allie747]

If I understand this correctly, it sounds like things are SLOWLY moving in the right direction. I hope your headaches get under control, plus you can get control of your panic attacks, plus you are able to get the nutrition it needs to help with the other things. I really believe the proper nutrition can help mend bodies/minds. Do I follow my own advice though? No. and with that note, I think I'll go get another cookie.
Keep posting. I want to hear how you are doing. I care.

[Allie747]

Gangling, that is awful! You're right. What is this world.coming to?

[Allie747]

Hey, all, I haven't figured this forum out yet in how it all works, but when I do, their are a couple of posts above I want to reply to. I just couldn't at the time because of, well, migraines. BLUCK!