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Intractable Migraines


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#1 firedancer

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Posted 02 September 2010 - 11:16 AM

It's been a while since I have visited this site. But I feel like I need to return for a lot of reasons.

I have been suffering with intractable migraines since Jan '05. I have 3-5 a week on average. I have been on disability since '08. Trying everything (meds) at least once. Pain meds were the only way to deal with them for 3 years. But I have been off prescription pain meds for a year now with only one ER visit in the past year. I have negative reactions to triptans and ergotamines so they are out. Usually when I get one, I put in my ear plugs, eye mask (chilled), get in a dark room and try to sleep, usually with the help of extra seroquel. In addition to meds, I have tried chiropractics, massage therapy, acupuncture, botox and tens unit. All this with no relief.

My biggest triggers are stress and weather. But how can you not be stressed with almost daily migraines? Not being able to work? Terrible relationships with people that just don't understand?

So I put this out there to see if anyone else can relate. I feel so alone. I'm at the end of my rope.
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Dx: Bipolar, Intractable Migraines, Social & General Anxiety, Idiopathic Seizures

Current Rx: Lamictal, Xanax, Seroquel XR, Nuvigil, Ambien

Past Rx: Prozac, Paxil/CR, Lexapro, Cymbalta, Ambien/CR, Wellbutrin XL, Effexor/XR, Depakote/ER, Keppra, Topamax, Neurontin, Zonegran, Trazadone, Klonopin, Seroquel, Zyprexa, Lyrica, Trileptal, Risperal, Ablify, Geodon, Lunesta, Skelaxin, Doxepin, Flexiril, Zanaflex, Verapamil, Lithium Carb, amitiptylin, triptans (can't take 'em), pain meds

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#2 bluedog

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Posted 02 September 2010 - 05:09 PM

But how can you not be stressed with almost daily migraines? Not being able to work? Terrible relationships with people that just don't understand?

So I put this out there to see if anyone else can relate. I feel so alone. I'm at the end of my rope.


I think having migraines is a lot like being mentally interesting Ė nothing can be seen on an MRI, X-ray, CT or EEG, so itís not real. For many people the only thing that works is serious drugs, and sometimes, as in your case, those don't work or they canít be tolerated.

I am married to a person with transformed, daily migraines and ice pick headaches. I know there are a lot of people who don't get it; even some Doctors have told him to exercise, eat better, and think happy thoughts. You are right - who could possibly relax and think happy thoughts when they are either in pain, or know that something, sometimes nothing, will trigger the next episode of pain that cannot be relieved, only subdued. Quality of life becomes a huge issue. Depression, anxiety and pain along with all the associated medications and therapies are part of our daily lives. There is very little "free time" to meet people and build new relationships.

I hope you have a good therapist and a good neurologist who get it. They can change your life.

You have tried a lot of things and I imagine itís been a roller coaster Ė give yourself credit. Donít give up. I hear you, I hope my post lets you know that I get at least part of it. Hang in there!
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#3 dymphna

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Posted 02 September 2010 - 10:42 PM

It's been a while since I have visited this site. But I feel like I need to return for a lot of reasons.

I have been suffering with intractable migraines since Jan '05. I have 3-5 a week on average. I have been on disability since '08. Trying everything (meds) at least once. Pain meds were the only way to deal with them for 3 years. But I have been off prescription pain meds for a year now with only one ER visit in the past year. I have negative reactions to triptans and ergotamines so they are out. Usually when I get one, I put in my ear plugs, eye mask (chilled), get in a dark room and try to sleep, usually with the help of extra seroquel. In addition to meds, I have tried chiropractics, massage therapy, acupuncture, botox and tens unit. All this with no relief.

My biggest triggers are stress and weather. But how can you not be stressed with almost daily migraines? Not being able to work? Terrible relationships with people that just don't understand?

So I put this out there to see if anyone else can relate. I feel so alone. I'm at the end of my rope.


Seroquel can drop your seizure threshold through the floor, even though Pdocs insist that it won't. Even some neuros insist that it won't. Every single time I take the lowest dose of Seroquel, I seize.

It is possible that, for many years, the relief you have been seeking has been hampered by the drug combos you have been on. I don't say this lightly. I had something so bad happen to me in 2000 that it landed me on a stroke ward for a week. No one ever really figured it out. Knowing my body, looking at my face now, and seeing how my body reacts (the trips, the bumps) I firmly believe I had a stoke that was missed. The result was, no shit, a permanent migraine.

I went through all the meds you took and more except Zonegran, Geodon, Lithium (which will cause seizures, btw), the narcotics (can't take any of them except morphine), and the hypnotics (saw no reason at that point). In all the combinations. In the end, we settled on Lamictal, Topamax, and Klonopin. It isn't perfect, and it goes to shit at ovulation, but it beats a 24/7/12 migraine w w/o a seizure attached. I didn't even know a migraine COULD be a permanent state (ah, yup, it can - if the brain fries itself just right).

I would strongly suggest that you go back to your neurologist and discuss revisiting some of your old meds, but in different combinations. And trying to get off the damn anti-psychotic. They are rarely good for seizure patients.


Dymphna
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I'm the Enforcer.

 

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#4 Serpens

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Posted 03 September 2010 - 01:29 AM

I went through all the meds you took and more except Zonegran, Geodon, Lithium (which will cause seizures, btw), the narcotics (can't take any of them except morphine), and the hypnotics (saw no reason at that point). In all the combinations. In the end, we settled on Lamictal, Topamax, and Klonopin. It isn't perfect, and it goes to shit at ovulation, but it beats a 24/7/12 migraine w w/o a seizure attached. I didn't even know a migraine COULD be a permanent state (ah, yup, it can - if the brain fries itself just right).

I would strongly suggest that you go back to your neurologist and discuss revisiting some of your old meds, but in different combinations. And trying to get off the damn anti-psychotic. They are rarely good for seizure patients.


Dymphna


There's a rather sick relationship between seizures and migraines. The leading theory on migraines is that they're a spreading neurological depression - an inverse of a seizure's spreading neurological activity. Of course you can also trigger it by sidestepping the neurological area and just making the right blood vessels dilate out.

The triptan issue, isn't such a bad thing. Those drugs get misused as much as narcotics I'm sad to say - and in some cases end up worsening the situation. They're slathered up and down with warning labels stating they should not be overused. Yet for some reason, GP from Medicare Revolving Door Clinic feels that they should be prescribing it BID - not 9 tabs a month. Eurgh.

A couple things - have cluster headaches and any odd sinus issues been ruled out? After this long, I'd hope so, but never assume - that's how they get forgotten. Anything odd going on with your blood pressure? Chronic hypotension, cardiac issues etc? In terms of options from this point - it's back on the Medication merry go round. I agree with D. Ditch the AAPs if at all possible. Go back through the seizure medications.

Also. Some of the old school drugs we don't like anymore. Any success with Midrin or Fiorcet/Butalbital containing compounds?
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#5 taffetadarling

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Posted 26 June 2011 - 01:09 PM

Another older post. Hopefully someone reads this!

Wow. I totally understand. I've been on everything you've taken, and I'm on disability for migraines in addition to Bipolar Disorder. Every doc I see says it's stress and I should exercise more and do yoga. I actually try to do those things on my "good" days (ha), plus meditate, but nothing helps. I've been in the ER 13 times this year alone! Now I just have pain meds and Phenergan to take at home to try to avoid the hospital visits. I hate narcotics though, and try to avoid them at all costs.

I've tried so many avenues of treatment, holistic and otherwise, with no relief.

I also pass out sometimes after experiencing the aura. That's a blast.

Now I'm just trying to be really good about recognizing when I'm getting one (4 to 5 times per week) and get to bed with an ice pack as soon as possible. Like it helps at all...
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"There's nothing I like more than wallowing in my own anger. It's a natural exfoliant." -Stephen Colbert

"I always had to try harder, I never really could keep up... Sitting in the corner with my illness and bad luck... But in this humble place I'm feeling like red wine, and I hope to feel better with some time... I'll be fine..." -No Doubt

**Also on Xanax 1mg 2x a day, mainly in case of emergency and to force me to sleep... Occasionally Percocet for migraines...Fentanyl patch, 50 mcg/hr.... Levothyroxine .05 mg for hypothyroidism... Vitamin B-12 injection every other week...Ambien 12.5mg and sometimes 10mg for emergencies....Seroquel 100mg to 300mg for emergency mania....Zanaflex 4mg.... I think that's it!**

#6 dymphna

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Posted 28 June 2011 - 06:32 AM

It's alright TD -

I've been on Topamax since 2001. If my dose drops, or if I'm late with my dose, half of my head explodes. They've never figured out what kind of migraine it is other than weird, although the very first neuro back in 2000 thought it might be something they used to call a "crash" migraine. The description they gave me was that, if I could visualize my neurons as if they were physical circuit switches opening and closing, for some reason, one (or a few) of mine were stuck in the "on" position. This was causing (in their theory) a non-stop migraine.

Depakote wouldn't switch it off, nor would Beta Blockers or triptans. Topamax was a godsend. I went from completely non-functional to operational. I still have issues elsewhere, but I'm no longer in bed all day.

I don't think the "average migraineur" can even conceptualize what it is like to have one that simply doesn't go away. I had "classic" migraines from puberty onwards. They in NO way prepared me for these. I don't know how I would have held it together if the Topamax hadn't worked.


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Yes, my name really is Dymphna.

 

I'm not a doctor, nurse, pharmacist, or therapist.

I can find you an answer and I won't blow smoke up your ass.

 

St. Dymphna is the Patron for brain maladies.

 

I'm the Enforcer.

 

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#7 taffetadarling

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Posted 28 June 2011 - 09:14 AM

Thank you. That's exactly how I feel. I've had "typical migraines" since I was a teenager, and those were nothing compared to what I'm experiencing now. I used to be on Topamax a few years ago, and I've seriously considered trying it again, because nothing helps anymore. I have injections, narcotics, preventatives, muscle relaxers, whatever... I didn't even list those meds on my profile because it's too much to type out!

I have to see my neurologist this week anyway for an emergency appointment. I have a new thing going on besides the passing out (which started in December)... I lose my eyesight now, and can only see bright light. Excruciating.

You get it.

I'll talk to him about trying yet another cocktail.
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"There's nothing I like more than wallowing in my own anger. It's a natural exfoliant." -Stephen Colbert

"I always had to try harder, I never really could keep up... Sitting in the corner with my illness and bad luck... But in this humble place I'm feeling like red wine, and I hope to feel better with some time... I'll be fine..." -No Doubt

**Also on Xanax 1mg 2x a day, mainly in case of emergency and to force me to sleep... Occasionally Percocet for migraines...Fentanyl patch, 50 mcg/hr.... Levothyroxine .05 mg for hypothyroidism... Vitamin B-12 injection every other week...Ambien 12.5mg and sometimes 10mg for emergencies....Seroquel 100mg to 300mg for emergency mania....Zanaflex 4mg.... I think that's it!**

#8 taffetadarling

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Posted 29 June 2011 - 10:26 AM

Update: Saw neurologist today, he's putting me back on Topamax, starting at 25mg and moving up to 100mg by the end of the month. My blood pressure was high because I'm in pain, and it always goes up when I have a migraine. He said that for right now, until the Topamax hits at the right dose, I have to take narcotics to manage pain.

Since the losing eyesight thing is new, I have to get yet another CT scan next week.

He's pretty confident this will work, because I haven't done Lamictal and Topamax at the same time before. I'm not really a fan of Topamax because of the weird side effects I experienced before, but at this point, I will do just about anything.

Any other input or personal experiences would be great...
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"There's nothing I like more than wallowing in my own anger. It's a natural exfoliant." -Stephen Colbert

"I always had to try harder, I never really could keep up... Sitting in the corner with my illness and bad luck... But in this humble place I'm feeling like red wine, and I hope to feel better with some time... I'll be fine..." -No Doubt

**Also on Xanax 1mg 2x a day, mainly in case of emergency and to force me to sleep... Occasionally Percocet for migraines...Fentanyl patch, 50 mcg/hr.... Levothyroxine .05 mg for hypothyroidism... Vitamin B-12 injection every other week...Ambien 12.5mg and sometimes 10mg for emergencies....Seroquel 100mg to 300mg for emergency mania....Zanaflex 4mg.... I think that's it!**

#9 korey1015

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Posted 29 June 2011 - 04:50 PM

Good luck with the Topamax, taffetadarling! I was on it for migraines for a short while in 2008. It helped the migraines, but it also left me constantly searching for the right word, so I was in a constant state of "Uhh...?" I eventually stopped taking it because of the side effects and the price (this was shortly before Topamax went generic, so I was having to pay close to $80 for half a month's worth at a time. Boo for hilariously weak Rx insurance). I hope you have more success with it this time around.

Around the time I was diagnosed with migraines, I was also on Adderall (Effexor too, come to think of it). I didn't know that amphetamines were bad about causing and worsening migraines until someone here told me about it. I feel like I should mention that after I stopped the Adderall, the migraines became less severe and their frequency decreased. I'm not suggesting you stop taking Adderall, but if it comes to it and your migraines don't seem to lessen, you could consider asking your doctor about a lower dosage of Adderall or even trying another stimulant altogether to see if it has any effect on your migraines.
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Things I have been prescribed:
Lexapro (escitalopram), Zoloft (sertraline), Celexa (citalopram), Prozac (fluoxetine), Paxil (paroxetine), Luvox (fluvoxamine), Effexor XR (venlafaxine), Remeron (mirtazapine), Wellbutrin SR/XL (bupropion), Eskalith CR (lithium), Topamax (topiramate), Valium (diazepam), Xanax (alprazolam), Ativan (lorazepam), Tranxene (clorazepate), Ambien (zolpidem), Restoril (temazepam), Rozerem (ramelteon), Desyrel (trazodone), Ritalin (methylphenidate), Adderall (amphetamine salts), Dexedrine (dextroamphetamine), Inderal (propranolol), Lopressor (metoprolol), Thorazine (chlorpromazine), Lamictal (lamotrigine), Abilify (aripiprazole), Depakote (divalproex), Geodon (ziprasidone), Sinequan (doxepin), Somnote (chloral hydrate), ProSom (estazolam)


#10 taffetadarling

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Posted 30 June 2011 - 11:16 AM

Thanks! I actually got a call from my pdoc last night and I asked her about the Adderall and migraines. Since I've been on stimulants for awhile, she doesn't think that's the issue. We still decided on lowering the dose, though... I'll see if that helps!

One thing we went over that I totally didn't think about is that the generic Lamictal I'm on just got changed last week, before this last major migraine hit. I think there has to be a connection, at least because of the new vision loss. She called in a script for name-brand Lamictal only, so I'm trying that tomorrow also.
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"There's nothing I like more than wallowing in my own anger. It's a natural exfoliant." -Stephen Colbert

"I always had to try harder, I never really could keep up... Sitting in the corner with my illness and bad luck... But in this humble place I'm feeling like red wine, and I hope to feel better with some time... I'll be fine..." -No Doubt

**Also on Xanax 1mg 2x a day, mainly in case of emergency and to force me to sleep... Occasionally Percocet for migraines...Fentanyl patch, 50 mcg/hr.... Levothyroxine .05 mg for hypothyroidism... Vitamin B-12 injection every other week...Ambien 12.5mg and sometimes 10mg for emergencies....Seroquel 100mg to 300mg for emergency mania....Zanaflex 4mg.... I think that's it!**

#11 Myshkin

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Posted 30 June 2011 - 03:20 PM

Has any of you with uncurable migraines tried botox injections, migraine surgery or some of the other more advanced options? I have no personal experience, I have just heard they have great results.
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#12 taffetadarling

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Posted 03 July 2011 - 11:45 AM

I might be trying botox injections soon. As for surgery, I have a lot of different kinds of migraines so I was told surgery might not be as successful...? My neurologist wants to exhaust every other option first. Also, my insurance company isn't crazy about approving... Well, anything that borders on "advanced." I wish I had the option, to be honest. This is kind of off-base, and I know medication is necessary for the conditions I have, I'm just sick of being on so many. Close to 20 total that I counted the other day, and it's always changing. Tons of people on here are in the same situation, so I know I'm not special or anything.

Whatever. Sorry for bitching.
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"There's nothing I like more than wallowing in my own anger. It's a natural exfoliant." -Stephen Colbert

"I always had to try harder, I never really could keep up... Sitting in the corner with my illness and bad luck... But in this humble place I'm feeling like red wine, and I hope to feel better with some time... I'll be fine..." -No Doubt

**Also on Xanax 1mg 2x a day, mainly in case of emergency and to force me to sleep... Occasionally Percocet for migraines...Fentanyl patch, 50 mcg/hr.... Levothyroxine .05 mg for hypothyroidism... Vitamin B-12 injection every other week...Ambien 12.5mg and sometimes 10mg for emergencies....Seroquel 100mg to 300mg for emergency mania....Zanaflex 4mg.... I think that's it!**

#13 Myshkin

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Posted 06 July 2011 - 09:30 AM

I know how you feel. It IS a bitch.
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