I am a (nearly) 23-year-old woman that suffers from a trifecta of chronic diseases widely regarded as being the most painful sensations known to mankind, Ask me anything.

Holy shit, I feel like a pussy now when I take advil for my minor headaches

Don't! Headaches are about the most painful thing I can imagine, even the run-of-the-mill ones!

How are you feeling today?

Actually, very well. I had a migraine- the normal kind- for about four hours after I woke up this morning, (which means I was feeling really good by about nine-o-clock!)

I'm sorry to hear about your suffering. I hope there was something I could do. I have a couple of questions:

How do you cope with the pain? Do you have some tricks you developed on your own? Do you just try to relax or do you try to concentrate (like meditation?)

I take 40mg of Prozac to try and preempt the pain, (or maybe just have hope that it wont occur? Either way, it works maybe two days a week, but I'm so thankful for those two days.) The days that they do take place, though, I take up to 4 mg of Dilaudid, 40 mg of Relpax, 12 mg of Sumavel Dose-Pro, 25 mg of Adderall, (if it's before noon,) or (if it's after 19:00) 25 mg of Ambien.

KATH, THIS DRUG REGIMEN LOOKS DANGEROUS TO ME. Are you being seen by a neurologist? Your drug regimen is likely to cause you headache problems.

EDIT: OK I see that you're a med student. I recognize that sometimes going off-label is the only way to get relief. I would still be concerned about this regimen.

Also, I do not see one drug that is considered the gold standard (best) treatment for chronic daily migraine and cluster. TOPIRAMATE, DEPAKOTE, and other anti-epilepsy drugs (AEDs) are preferred. I also see none of the other commonly used drugs for migraines: beta-blockers, tricyclic antidepressants, some muscle relaxants (especially tizanidine). I find this very troubling!

1. Your Ambien dosage, if you said it correctly, is an overdose of 5 times the recommended dosage!! Recommended dosage for Ambien in adult women is 5 mg. If any doctor prescribed 25 mg of Ambien for me, I would ask for a second opinion. Screwing up your sleep makes headaches much worse, and sleep problems are common in migraine.

A better drug for long-term management of insomnia is TRAZODONE. There are some others available. But Ambien for longer than 10 days is not recommended.

1. If you are taking Relpax (eletriptan) + Sumavel (sumatriptan) TOGETHER, this is also an overdose!! Maximum dosage of triptans per 24 hours is 2 doses. I see that the American Headache Society says 3 doses is OK for cluser headache. You take one dose, then if the headache is not gone, you may take a second dose AND NO MORE in a day. Triptans are powerful drugs. If any doc prescribed this for me, I would ask for a second opinion. AND when triptans are overused, they can cause rebound headaches. VERY COMMON. Taking two doses at once is overuse.

2. Adderall? For migraine? Adderall is not recommended for headache treatment. Could it be that you're extremely tired in the morning and need an upper to wake up? MAYBE THAT'S FROM THE DANG AMBIEN. If so, this is really bad practice. Adderall is known for giving headaches. Unless you're taking it for other reasons, be aware that this drug will most likely NOT help your head.

3. Prozac is not that great for headaches. It can actually cause them! Did both for me: at first, it helped, then it caused them. If you must have an antidepressant, sertraline or a different SSRI may be better.

4. When triptans and SSRIs, in your case, Prozac + Relpax + Sumavel interact and can be dangerous if not prescribed and monitored with caution. You can develop life-threatening problem called "serotonin syndrome." You don't play around with this.

5. Using any pain reliever more than 2x per week can cause rebound headaches. If you're taking Dilaudid more than this, you may have what's called "medication overuse headache".

Please message me if you have questions. I think your problem be worsened by your drug regimen. I'm an RN and had chronic migraine with aura (and hemiplegic features), chronic daily headache, and tension headache for 20 years.

EDIT: correction on triptan dosage, punctuation.

Thank you for your help, but I am actually an RN myself, (and in medical school,) and I see a neurologist, I actually have for over a decade. My personal drug regimine, is just that- mine and personal.

Also, I stated earlier that I take Flexeril.

• 1. That is the recommended dose for Ambien for women for insomnia, I do not take it for insomnia, I use it for an off-label usage. Also, I am contraindicated from using trazodone due to a non-related issue.
• 1b. I don't know where you are getting your information from, but Relpax is a medication that is prescribed on an individual case-by-case basis. Safety and efficiency of 80 mg single-doses, have been demonstrated. Relpax and Sumavel are safe to co-injest as long as the doses are spaced at least two to three hours apart as their half-lives are both 2.5 hours. Also, two doses of Relpax and two doses of Sumavel only figures out to 52 mg.
• 2. No, I have ADHD and also need to be able to get out of bed a couple days of week, not because of the Ambien, but due to the fact that I have a debilitating medical condition.
• 3. Prozac is actually great for my headaches. It works amazingly for me. Also, you are both recommending a seperate SSRI and warning of serotonin syndrome. Not to mention sertraline has an increased risk of synoscope, an additional liability I really don't need when I can't control and/or feel anything left of my midsagittal plane.
• 4. Although there is a low risk of serotonin toxicity, if it was going to occur it most likely would have manifested in the past decade.

Although I appreciate your concern, this is a problem that I have been dealing with for over fifteen years, and it's my personal illness, best managed between myself and my physicians. I would also warn against advising people that you have never met, or consulted with a treating physician regarding, of what you view to be a quality assessment of their care. As you know, if someone was to adjust their dose regimen base upon your advice that could place both your and your supervising physician's lisences in jeopardy. Thank you for your input, though.

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Yikes, Tramadol? I took that one time and I got so pukey I couldn't funtion. I hope your poor mommy finds some relief. I totally concur. As you know, there are guidelines, and then there is real-life, and they don't always meet exactly in the middle. I know a large percentage of Redditors aren't religious or spiritual, and I don't know if you are either, but I'll say some no-strings-attached prayers for your earthly bearer.

I know very little about most of your medications, but I know that that dose of zolpidem (Ambien) is extremely high and the FDA has just recommended against exceeding 5mg as a woman: http://www.fda.gov/drugs/drugsafety/ucm334033.htm Would recommend you keep an eye on that if you do anything at all requiring alertness in the morning (not just driving - cooking, taking a bath, etc).

As I've stated, I only take the Ambien when I'm not going anywhere, (whether I'm driving or not, because I don't like being loopy in public) not to mention the FDA recommended dosage hasn't been changed for me, (like the Prozac, my Ambien as an off-label prescription, and as a result not what is covered by recommended dosages) In addition to being a massive sleepy-head at times, I am a medical student. Thank you for your concern though, dear! Seriously, no sarcasm at all.

You mention in your original post that you are legally blind, and in another post that you can't see past your elbow. Then you say you drive. Is your vision only compromised that bad when you have a cluster headache, or are you driving around with a seeing eye dog on your hood?

Hahahahaha, that is a great visual, (pun not intended.) When I say I can't see past my elbow I mean in the midst of a migraine, (with correction,) or under normal circumstances, (without any correction.) I do have a restricted driver's license, but I never drive when I have a migraine. Sorry for the confusion!

Heh, no worries. I figured it was something like that. I just got done reading on wikipedia about cluster headaches(suicide headaches) and wow! I absolutely cannot comprehend that level of pain. I wrote another post about some research they have done in Berlin, where they have used non hallucinogenic LSD as a cure for cluster headaches. It appears that it short circuits whatever part of the brain is causing them.

Here's a link

Maybe I'll check it out next time I have some time and Lufthansa has a sale. Also, your username is terrifying.

I still don't get how you have a drivers license if you're considered legally blind.

I have a restricted driver's license.

Doesn't ambien cause hallucinations?

Depends on what you're doing with your Ambien. I get auditory hallucinations as I'm falling asleep, but never visual...as I'm pretty sure those are called dreams.

First, ouch. My sympathies.

Second, are you concerned about the long term effects of using opiods five times a week? Or whether it's actually effective pain management? Do your doctors disagree that http://en.wikipedia.org/wiki/Medication_overuse_headache is a potential issue?

Third, how much worse are cluster headaches than migraines?

I don't think you understand, no offense. I don't have headaches. I think I would have killed myself by now if it wasn't for opiate/opioid pain killers. That being said, I do hold out as long as I can before taking any opiates because I don't want to have any rebound pain...or, you know, a liver transplant.) Luckily enough, also, I am prescribed opiates without APAP, (in addition to the combonation painkillers if I need to stay awake.) I am a medical student, so I do understand the risks of excessive opiate use, but I have literally tried everything my insurance company or I can think of to aid in this situation, it's just, um, reportedly literally, uh, worse pain than terminal cancer.

A cluster headache is about a thousand times more painful than a migraine. Picture getting your nose pierced versus shot in the face, (full disclosure: neither of those have happened to me, haha.)

I know I can't understand, as I've never had cluster headaches, but I have spent two weeks at an in-patient headpain treatment center for migraine, among other similar adventures. The head pain clinic I went to led me to believe that the rebound effect on opiates meant using them more commonly than twice a week did not lead to a lower average level of pain in the long run, whereas they could be effective when used no more than two days a week. I have no medical education though and was pretty much just trusting they were right on that.

And, from what I've heard of clusters, that's a level of pain that precludes weighing long term considerations. Anything that can possibly ease the pain is understandable. For vanilla migraines, my personal experience has been that the acute treatments (opiates, etc.) do work a lot better if used infrequently. Clusters are a whole different beast though.

edit: Also, props on being able to continue academically through this. I can't fathom functioning well enough to accomplish what you are doing with that level of pain.

I definitely 100% agree that "vanilla' migraines should only be treated with opiates rarely, (say you're going to a major event that requires you to be semi-coherent.). I also am lucky enough that I have a doctor that is considerate and understanding enough to prescribe me APAP-free painkillers to spare my poor little liver. Also, you are right, although clusters are not physiologically damaging, (aside from what one may do to themself during an attack,) they are generally treated as a medical emergency due to the intense pain- if you can find a care center that believes that you are actually experiencing pain, that is.

I have had a cluster headache and can verify that it feels like you are dying from a stabbing explosion in your brain. It is a horrible localized feeling and I hope I never have it again. I hope you find sustainable treatment and relief.

Although you're not the doctor, this an accurate assessment of the sensation. Thank you. Namaste-style barganingwithGodtopleasenotletthiscontinueanothersecond seems to be the best mode of treatment at times.

This is going to sound out there, but have you heard about LSD short circuiting cluster headaches? You can check it out online. The type they use in this study, is not even hallucenogenic. I don't know how you could go about getting the non-psychedelic kind, but hey; maybe buy a lava lamp, incense and some Pink Floyd, and kiss those headaches goodbye!

I've actually heard of the LSD, but not the non-hallucinogenic kind. Hell, I'll break in to my school's analytical laborotory and "investigate" some CI samples*

• It's just a joke DEA. Please don't show up at my house or university, you guys are always such drama queens.

It'd be comforting to know the DEA is devoting resources to catching the legally blind chronic migraine sufferers, they're the real threat to this country.

We all have to pick our battles.

Wow that sounds awful. How do you use the computer if you are considered legally blind? As a person that has only had a handful of headaches in my life I really wish you the best of luck and hope they are able to treat you. What meds do they give you for your migraines?

I usually wear corneal-reshaping hard contacts, trifocals, and your average soft contacts. Right now, though, I have my iPad (although, I usually use a Chromebook, but I can't find my charge cable...because I'm legally blind...haha!) set to 150% zoom with my trifocals on.

How did it make you blind? And how well exactly can you see with the naked eye?

I can see about as far as my elbow, and from the best of my understanding, the overactive neurons/blood vessels in my brain are so focused on attempting to resolve what is causing the constant pain in my melon that my sight simply isn't a priority, (becuase my brain doesn't know what is happening to me is not life threatening.) Not unlike how when someone has a tonic-colnic seizure all muscle regulation becomes equally important to the brain.

Wow that is really interesting. I wonder if it has anything to do with the aura / sensitivity related to eye sight that people (and I) get from migraines?

I've just never heard of being blind from your brain rather than something wrong with the eyes.

My vision actually gets a lot worse and very dynamically strange when I'm in the midst of an aura. It looks a lot like this except the visual disturbances are almost greyscale in my brain:

http://en.wikipedia.org/wiki/File:Scintillating_scotoma_interpretation.gif

I saw a documentary about psychadelic mushrooms used to treat cluster headaches. Have you ever tried that?

No, I'm way too much of a control freak to try that! I have a Prop 215 card, (that I keep in my back pocket in case of emergencies, I guess,) but the times that I have smoked marijuana in my life I have had total paranoid meltdowns. So I guess I'm just too scared that it would do more harm than good.

You don't need to totally trip balls to get the effects. Like this article points out, only sub-hallucinogenic doses are needed to halt and prevent cluster headaches.

I understand what it is saying, I'm saying that with my luck I would most likely end up all kinds of unhappy.

Do you have any TMJ problems? exostosis or tori ?

Yes I do, I have bruxism- the clenching kind rather than grinding.

Also, I just took the time to re-read my original post; I used Apple/iPad's "Speak" feature to proofread- Goddamn am I sorry for all those typos!

claim:

• massive migraines, massive pain
• nearly 23 years old
• legally blind
• legally disabled
• RN
• loving fiance
• in med school

...and your point? Absolutely none of those things are mutually exclusive.

is it a tumor?

Nope, thank God, (it's what I choose to believe;) it's genetics. My mother never had a migraine until the day I was conceived, and then had them roughly five days a week for my entire gestation period, (I made it here via IVF, so she knows exactly when I was ~destined to be born,~) my father suffered from chronic migraines since he was about six-years-old until the time he had four strokes after major surgeries, (two heart valve replacements, and a benign tumor removal,) and although my grandfather didn't suffered from them, he worked on the Manhattan Project and, as a result, was told that covering his eyes from atomic bombs would shield him from the radiation...so I think that may have been the culprit.

So I'm willing to bet that was the source.

(Sorry for any typos!)

So what you're saying is it's not a tumah.

http://www.hark.com/clips/qrtmtsszph-its-naht-a-tumah

So you need to get pregnant to pass on the curse...

I'm going to also do IVF in hopes of therapeutic gene selection, (because even I'm not that much of an asshole.)

Tell 'em there's feedback with the implanted RFID chip.

I would love one, (the hospital I was born at for a very long time thought I was just a drug seeker as for about a month I had to go to the emergency room every-other-day.) Closest I have is a MedicAlert bracelet!

Being treated like a criminal when you're in severe pain is the worst. You aren't a drug-seeker. You're a treatment seeker.

I know, as a fellow nurse I understand their intent, but it's just not right to label patients as wildly as is the practice at times. Especially when the gold standard is currently handing out morphine for greenstick fractures.

well, its not lupus

Game-changer: I also have SLE.

Fuck you, House.

You are inspiring. Damn inspiring.

Thank you.

How long does each headache last? Also, can you have more than one a day?

It depends, they can last four hours to multiple days, and yes I can have more than one a day.

I know that this is quite late to reply and I am sorry that you suffer so much. I just wanted to pass this on to you. Here in the UK, they are experimenting with Botox and with some success in treating migraines. You may be able to Google it to see if this could be applicable to you. I wish you all the best.

I actually have Botox, thank you though!

How does this effect your everyday life? Do you find it hard to concentrate? Do you/ have you worked? If so, what do you do and how does this effect you doing this?

Horribly, and yes. I normally have to take Adderall to focus, (which, as a sort-of narcotic has the side-effect of distracting me;) however, I am currently in the midst of my post-secondary education, so I am doing better than I planned to have been. I previously worked at Hollister Co., and Ruehl No.925, (subsidaries of Abercrombie and Fitch,) as well as a manager at Starbucks during my undergrad. I felt like loser-cum-loser until I reached twenty-ish because no one believed me! For the longest time I was made to feel like I was faking it and/or being a drama queen when I couldn't feel half of my body! It was only when I had a severe attack about two months into my freshman year of high school where I couldn't walk to the nurse's office, (by the way, because of this, I have been on a first-name basis with every school nurse I've ever had- since pre-K,) and the assistant principal called the police because he thought I was being "rebellious," (in his defense, I thought I was paralyzed and was screeching like a meerkat being abducted by a cheetah,) that I finally recieved an MRI and CT scan where it was finally revealed that I actually have a physiological problem with my brain.

Sorry for any typos!

Could you describe in more detail the physiological problem with your brain? Is there some sort of lesion, or inflammation, or ?

Absolutely. It's a mix of a few things. For the cluster heaches, I have an overactive hypothalamus, (the part of the brain that controls body temperature, thirst/hunger, as well as vasodilators.) Migraines, (of both types,) are also caused by dilated blood vessels...so, I guess, for lack of a better term, I get brain hard-ons.

Have you ever tried Nortriptyline to treat migraines like Prozac, and if so what was your experience? Do you vomit when you have a migraine, and if so, does it make you feel better afterwards, or even really really good? Do you think your migraines/dilated blood vessels are caused by low serotonin levels, and that's why you're taking Prozac, and if so, have you tried any natural methods of boosting serotonin levels, specifically bright lights in the morning?

I suffer migraines and I'm trying to learn as much as I can. I'm a night person, I'm wondering if staying up late all the time exposed to light means that I'm always making serotonin and never melatonin, maybe the constant exposure to serotonin means I've become desensitized to it.

oh! I wanted to mention: The only thing I was ever able to find over the counter that stops my migraine if I take it soon enough, is a muscle relaxant like Robaxacet. Have you ever tried something over the counter that works?

An over the counter natural supplement that I find helps to prevent or reduce frequency is: kava kava.

Finally I think melatonin might help me get better sleep when taken occasionally, which seems to reduce muscle pain in general.

Do you have any other symptoms that you associate sort of directly or indirectly with migraine eg. neck pain, back pain, exercise or physical exertion, sex, constipation or diahrea and so on?

I've never tried Robaxcet, but I have tried Flexeril and Valium, (I live in California where all three are Rx-only,) and they do help a bit. I'm not sure if it's because they give me the sleepies or if they help with cervical (neck) tension, but it's better than nothing. Kava-kava tea actually helped me a bit when I used to use it, IIRC, but that was about five years ago and the details are a bit fuzzy to me these days. I love melatonin. So much. There was a time where I accidentally put my Dilaudid in the washing machine and I as a result was going through withdrawals for about five days until my prescription was restocked at the pharmacy, and the melatonin helped so much with the restlessness and muscle cramps.

Have you been prescribed oxygen via nasal cannula for your cluster headaches? Did triptans work for your migraines? Do you take anything for nausea?

Pressure-positive oxygen is amazingly helpful; however, the practicality of it is a bit prohibitive. They used to, but I've developed a resistance to them, and yes. I forgot to mention I take Zofran and Phenergan for nausea.

Yes I have! It was the first medication I ever took to treat them! It worked very well up unitl the time I was about eleven, but I eventually adapted to it, which, is by the way, I believe that except for in cases of extreme need that children should never take antidepressants, (migraines and severe depression do count as cases of extreme need in my book, though.) I do vomit. I don't think I've gone a day in about three years without vomiting, but I've gotten lucky enough to never have a cavity! I do have bruxism, and as a result will have orthodontics for the forseeable future though, (and yes! It does contribute to my migraines,) so it's not like I don't have my fair share of oral problems. Yes, I do think that low plasma serotonin has to do with it, (as SSRI's have helped more than almost anything else, and all the medical journals I have read also support this view.) I have a few of those special SAD lights for the Winter/morning, and they really help! Really, really, really! Except too much light in the morning makes me throw up, too, haha. Do you by chance have vision problems or have been checked for them? I know that when I got special screen adapters for my electronics to lower blue light emissions, (as I previously stated, I usually wake up around four AM, and would read on my phone for an hour or two until my migraine would kick in,) be they my iPhone, LEDs on my UVerse box, Chromebook, iPad, alarm clock, etc., it would dull them a lot. It went from that stabbing pain corkscrew/icepick pain to a gnawing pain. I mean, I have a migraine now, (I'm on my iPad with 0% brightness,) but I'm still able to function enough to keep doing what I am.

Migraine involves dilated blood vessels, but this is usually a response to a rapid depolarization of brain cells followed by a spreading cortical depression in the brain. It is currently thought to be similar to epileptic seizures, which is why anti-epilepsy drugs work for migraine.

I am not as familiar with cluster headaches, so I won't speak to that.

Good resource for migraine treatment info: http://www.americanheadachesociety.org/professional_resources/headache_fact_sheets/

Once again, thank you for your help; however, cortical spreading depression is just one of a few synergistic occurances that contribute to migraines. Neurons, blood vessels, and serotonin levels also play contributing roles- which is why SSRI's may also be used in management.

Also, did I come off as a total bitch in my other posts to you? I just reread them and realized I sounded like a total sass-pants, my apologizes MigraineNurse-lady!

How often do you get them? What's a normail day lile?

About five days a week. Usually Sundays, Mondays, Wednesdays, Thursdays, and Fridays. A normal day consists of my waking up, (without an alarm at four AM. My nose will start feeling plugged around a quarter-past-four, which tells me I will have a brain-pain soon. I'll take my first dose of Relpax the moment I feel that stuffy-ness. Sometimes it works, but rarely. If it does not, I take 1 mg of Dilaudid an hour later. That usually puts me to sleep, but if not by six AM, I then take an Ambien. If I have school that day, I have my fiance, (or the Outreach Para-Transit, if he has an early work day,) take me to school. I do not drive under the influence of any of these medications, because I don't think that my brain aches should lead to anyone's brain death. When I get on campus around nine AM, I take another 0.5 mg of Dilaudid, if I cannot read what is being displayed. I administer to myself a dose of the Sumavel Dose-Pro if I'm still having trouble.. The whole situation sounds insane, (because it is,) but luckily enough I am studying medicine so most of my instructors understand.

Can you describe the pain of cluster headaches to those who are unfamiliar with the condition?

It's really hard to describe as I have felt nothing else even close to it. I have never broken a bone, and the only surgery I have ever had was to remove an ovarian cyst. I guess the closest I could desribe if given artistic liberty would be if I had a vice clamp consitantly tightening over my temples, a drill boring a hole over my left eye, my left nasal cavitty being closed, (kinda what I would imagine the stone being pushed over the top of the well in 'The Ring,' would feel life if it was a tangible pain,) and my eye socket cracking from sheer pressure. Often I feel like having a lobotomy lacking anesthetics would relieve the pain.

Is there a name for the trio?

How do you deal with it? Medicine? What do doctors tell you?

Do you show your pain when in public? I.E., are you wincing at light, minor face contortions, basically, do you show that you're in pain? Do people ask you?

There's actualy not. Medicine, lots and lots of medicine. The most helpful preventative thing, (which, I by the way forgot to mention until now,) is that I have a ton of therapeutic Botox in my face and neck. At twenty-three, I have the smoothest forehead in all the land! I do show discomfort on accident. I never want to show pain because, (in my experience,) the pain gets a lot worse if I have to explain/admit to the pain; my left eye gets all squinty with the pupil constricted, I crinkle the bridge of my nose, (as I said, I have a ton of Botox, so I have no idea how my face really moves anymore,) and my left eye waters a lot. People ask, but I usually just say I have allergies. My parents know how bad it is- as do some of my professors, my friends think I just have headaches, and I have only as of the past year admitted it to my fiance because I'm so embarassed.

Why do you have botox? :)

I like being a pretty pretty princess.*

*Naw, seriously, it just helps with the migraines. It is a cool party trick though that I can't feel my forehead.

No shame in either - but I'm glad it's something that helps!

The only thing I really don't like about it is how weird it makes me look- especially my skin and expressions.

http://imgur.com/234tx.jpg

I feel like I resemble something out of Prometheus at times.

Are you kidding? You look like some sort of model or mannequin there!

:)

Thank you, I just wish I could make normal facial expressions again, haha.

Botox is used therapeutically for chronic migraines.

That's a bingo!

What has been your worst experience as a result of these migraines?

It would probably be what prompted me to do this AMA. A few days ago I had such an intense one that I legitimately thought I was having a stroke- I couldn't move half of my body and not only was my speech slurred but I was having a very hard time forming sentences. As I said previously, my father has had a few strokes, so I thought I was done for.

This happened to me, too. I was 8 months pregnant at the time. Scared the bejesus out of everyone, but it was a migraine aura. Also happened while I was breastfeeding, twice. Scared them all again. I was more terrified the first time when I didn't know what was happening, but the second and third times were scary, too.

Definitely, I was a child when mine started so I didn't know how to convey what was happening to me. I can only imagine the absolute terror of being on that line of viable pregnancy when one first occured.

• Have you gone to college? If so, was it possible to graduate in spite of your suffering?
• Since you are disabled, I assume you don't work (please correct me if I'm wrong), do your parents support you?
• Is there anything that you've tried that is able to make the pain stop relatively on-demand like advil for normal headaches?

Yes! I am actually in post-graduate school. Although I used to work, I don't really as much anymore so I can focus on school- my fiance is awesome. I've tried heroin...totally kidding, although I have been in so much pain that I've thought about it a few times, (although I've never done drugs. The last thing I need is added withdrawal or neurotoxicity pain, too.) If I'm stuck up shit creek without a paddle I'll play drugstore cowgirl and take three 200 mg ibuprofen, three Nature's Bounty B12's, an extra-strength Aleve, and a cup of coffee/bottle of Mt. Dew. I'll then find the nearest safe sleeping spot- usually my car- and get in a disco-nap.

How has your condition affected your sex life, can you maintain a normal sexual relationship?

I've been with my fiance since I was nearly eighteen-years-old, and he was nearly twenty-three. Even during our honeymoon period we were never especially sexual, (maybe four/five times a week?) About once every two months we'll go through a period where we'll have sex twice-a-day for about three days, but even before he knew the pain I was in, he picked up on the fact that sex wasn't my number-one priority, (also, when we first got togther I was taking Accutane, a prescription acne medication that effectively assassinates any rapidly multiplying cells in the body, which really cuts into vaginal lubrication. Even with Eros lubrication it at times felt like I was being pounded with a cement pipe; I am also sure it didn't feel great for him, but he is way too kind to ever speak of it.) I am so lucky, becuase with the pain I am in I can be a horrible asshole nine-out-of-ten times, but for some reason he really loves me, even though I'm a total wet blanket.*

But, those few times a month, when it's on, it's on.

How do you not cry with pain 24/7?!!!

You get used to it. At a certian point you just have to get life done.

I have a family friend who suffers from a permanent migraine - mostly the last 15 years without any relief or known cause (i.e. no head injury, stroke etc). Sleep (as is going to sleep) and heat make it worse. Have you tried any extreme or experimental treatments to alleviate the pain?

I've gotten a lot of Botox, acupuncture and off-label uses of medication.

Hey! Thanks for the AMA. I get migraines pretty frequently and actually just found out about the cluster ones. How do you describe a cluster migraine? When I get a migraine I cant eat, rarely sleep and sometimes cant walk. My eyes pour tears sometimes and i cant help it. My doctors just keep prescribing me stronger painkillers that pretty much just help me sleep. Did you see a specialist or how did you get diagnosed?

Also, I just realized I neglected to respond to part of your question. Cluster headaches make me feel like preforming a lobotomy with a ballpoint pen sans anesthesia would relieve the pain. If I wasn't religious I'm sure I would have fatally snapped by now.

I'm (obviously) not the OP, but would like to point out that clusters and migraines are very different things. Migraines (which I get most days) are unpleasant. Clusters are the first medical condition that shows up when you google "worst pain known to man", and are colloquially known as "suicide headaches".

You are correct.

This is exactly why people go undiagnosed. People thinking "oh it must not be that bad" or "youre overreacting." Im just asking questions so i can further figure out what my headaches are. I broke my arm in three places and it took me a month to convince a doctor to x ray it and figure it out. Pain is different for Everyone. Sorry to unload on you, but you just hit a nerve there.

It's okay! Part of why I decided to do an AMA is to hopefully help someone understand themself; whether that involves helping them get a diagnosis of something, or simply being reassured that that pain that they're simply unsure about isn't something they have to worry about going through alone. What's the point of doing an AMA if you don't want people to ask questions?

It sounds like you and I have very similar migraines, right down to the watery sinuses/stuffy nose. I am even 5'11" and weigh around 121lbs., because I simply cannot eat most days. I also appear drunk even without medication becuase my coordination and speech become exceedingly difficult. If you don't mind me asking you, [anything- see what I did there?]

How old/what gender are you? What painkillers are you on/how often do you take them? Do you see a neurologist or just a general practioner?

It took me about three years before my doctors believed me enough to send me to a (pediatric) neurologist, as when elementary school children say, "I have a headache," daily, they tend to not be telling the truth. Or they just need glasses. My neurologist then sent me through an MRI, a CT scan, an EEG, and a sleep study to ensure I wasn't having mini-strokes or seizures.

I got glasses and all that. And i read up and cluster headaches, and supposedly you can stop getting them for a long period of time (mine stopped for about a year) and then start again out of nowhere, which mine did. Do you find yours are at exactly the same time every day? Mine are like clockwork. Ive just seen a general practitioner but may see a specialist.. Im taking zolmitriptan almost twice a day (the maximum amount). And im a 19 y/o female. Thanks for responding!

Yes they do. I can even predict the days I will get them on, (typically S, M, W, R, F.) Also, I cannot encourage you enough to see a neurologist. A PCP/GP just can't do as much for you as a specialist can.

My step mother has chronic migraines and there are days where she'll be bed ridden all day long because the pain of getting out of bed and the sudden change in body orientation is just too much for her to bear.

If you don't mind me asking what medications do you take? I feel really bad for her and maybe if I knew what you take she could ask her doctor about it or something.

A lot. 40mg of Prozac daily, ≤ 4 mg of Dilaudid as needed, ≤ 40 mg of Relpax as needed, ≤ 12 mg of Sumavel Dose-Pro as needed, ≤ 25 mg of Adderall, (two 12.5 mg doses six hours apart if the pain begins before noon,) or ≤ 25 mg of Ambien, (two 12.5 doses two hours apart if it's after 19:00.) I also have enough Botox to paralyze a small army. I also take about a half-dozen asthma medications, and some topical analgesics if you want to know those, too. I throughly encourage you to tell her to see a neurologist, (if she doesn't already.) There are just a ton of treatments available to patients of neurologists that primary care physicians just aren't able to provide, (for example, if her pain was hypothetically so bad that she couldn't function at all ever, she would be limited in the number of painkillers her PCP could provide, while hypothetically her neurologist could put her on pain managment or methadone maintenance. Painkillers aren't the best option in my opinion, but it is best that she has a doctor properly versed in how to safely prescribe them, rather than one that just wants to eliminate her pain. Although obviously no one wants her to be in pain, it is much more important that she has her pain safely managed.)

Wow, that's a lot of meds. Not to sound insensitive, but what would happen if you stopped all medication for a week or so?. I really am curious.

Well, I'd go through withdrawals from some of them, and after about seven days without the Prozac I would be back to the same baseline amount of episodes that I suffered from prior to diagnosis.

Not sure if you've tried/or are okay with it, but have you considered smoking marijuana in an attempt to alleviate it?

I have, (I have a Prop 215 card,) and although it does help with the pain, it also gives me horrible paranoia, and I just stay high way too damn long after that paranoia sets in. I also have this same problem with Marinol. However, if we're talking strictly about pain relief, it is awesome.

Do you work? If so how do you manage the migraines while working?

I generally do, but right now with school I just don't really have that much time to. I have a reasonable accommodation that allows me to take advantage of my workplace's nap room whenever I need to, (the Bay Area's awesome.)

I am so sorry for this.........as a former migraine sufferer........this is my worst nightmare

It always could be worse. I'm alive, and have a huge appreciation for every moment that I just feel mediocre.

how do you feel about people who fake pain problems to get prescribed narcotics?

Part of me is very angry, becuase although I am in legitmate pain and have never taken a drug to get high, I still am looked at as a drug-seeker by many. For example, the hospital that I was born at has me on a special "ED care plan," which consists of them refusing to administer me any narcotics, no matter what the situation is, because my disorder is so poorly understood with little awareness. I've had a nurse say directly to my face "We aren't going to give you pain medication, but we are giving you a prescription for Suboxone." On the other hand, my grandmother is an alcoholic and a controlled Oxycontin/Percocet addict, my father is a recovering alcoholic with thirteen years of sobriety, and my now-departed uncle died of alcohol and HIV related liver failure, so I do understand that is no less of a disease than what I suffer from; however, (aside from in cases of controlled addiction,) the addict has to make the conscious decision to engage for the first time in that drug abusing behavior.

I really wish there was no such thing as Rx-only medication, only "recommended" medication, though. I think that if someone is a competent adult and not out wielding their vehicle at someone, or working in a safety-dependent profession- I'm looking at you Denzel Washington in 'Flight'- they should be allowed to take all the heroin that their little heart desires. I'm kind of a hippie like that.

Does Vicodin help you at all? What other drugs help? So you know any of the triggers? My mom gets migraines, and there are no apparent triggers.

Yes it does. Basically any opiate/-oid medication is helpful; however, I don't take it because of the APAP. My triggers seem to be waking up, eating, getting too hot, being in bright light, being in low light, reading, fluorescent lighting, perfume, scented detergent and/or fabric softener, caffeine, preservatives, loud noises, flashing lights, yelling, whining, and that noise poorly lubricated tires make. Then sometimes they just pop up because they can.

You honestly seem like a really nice person. I wonder, do you want to have children?

Thank you, and I do. As an unrelated issue, I also have some reproductive fuckery going on, so I've had my eggs harvested already. So hopefully when I'm ready to spawn they will do some gene-selection therapy, because in my mind the most important part of being a parent- especially to an infant- is protecting that child to the best of your ability. As a result, I feel that if I can't ensure that my genes that cause this issue wouldn't be activated in my child, I wouldn't be protecting him or her well enough to justify having my own biological children. I don't view it unlike how reckless I would be to not wean myself off my addictive and/or teratogenic medications before getting pregnant. If I can't do those things to protect my unborn child I would need to have a surrogate or adopt. There are a lot of children from impoverished American neighborhoods that could use love- even if mommy's head hurts!

Do you know if it is possible that these are genetic? My mom and older sister have always had migraines, and about 4 years ago (15 now) I started having what I think are cluster headaches. Did either of your parents have any related conditions?

Yes! My mother has only had migraines for ten-months of her life: when she was pregnant with me, and my father had terrible migraines, (but not clusters,) in his adolescence. The day after having surgery on his toe when he was sixty, it was discovered that he also has epilepsy, (as he had a seizure at four-o-clock-in-the-morning the night we took him home.) He has severe congenital heart defects, though, so I think I made it out pretty good.

Also, I highly suggest you head to a neurologist. You could be quite effectively treated with many things.

I see from previous questions that there is a family history of migraines. Have you met with a genetic counselor before? If not, do you plan to?

Yes, yes, yes. It would just be irresponsible not to, in my opinion!

I suffer from the "i want to kill myself" type of migraines. My doctor got my insurance to cover massages which have helped some. He alsotold me to take 400 mg of vitamin B ( riboflavin I believe). There are studies that show taking the vitamins for three months ( I think) may be able to cut your migraine occurances in half. I try to use natural remedies to help with migraines but I will also admit I have plenty of long lettered medications in my drawers lol.

Yes, I know that all too well. I try to prevent the whole situation by properly taking care of myself, but as you know, life doesn't always agree with your plans.

Do you know anyone else with this trifecta of diseases?

No I don't.

I have only recently (last year or so) heard of cluster headaches and I am in absolute awe of the people who suffer from them. My boss' husband suffers from them and is considered disabled; it's amazing for me to hear you are in school and continuing your career, major kudos to you. I wish you nothing but the best in life and hope you one day wake up and never have any pain again!

My only question is, do you have any tips/tricks I could pass along to her to share with her husband?

The simplest thing that I can urge is for him to find something that he really loves, and focus on it. Even if he loves something like fishing, maybe have him take five minutes out of his day to read up on the local fishing report, (they have those sorts of things, right?) so even if he is having a very bad day, he can have that little light at the end of the tunnel.

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Sadly, so far no.

First of all, ouch. Second: any tips for us plain joes and janes dealing with plain old migraines?

Two ibuprofen 300 mg, (or 600 mg.- Rx only,) or mild opiates, (I'd suggest 5/325 Vicodin or 2.5/325 Percocet, only if prescribed by your doctor. If not prescribed you could run into the much worse problem of rebound pain,) as well as grabbing a medium cup of coffee, (or, if you have good health insurance,) emergency room IV caffiene, and most importantly SLEEP!

I can vouch for this. Whenever I have a migraine, I'll take 600mg of ibuprofen and two tylenol #1's. Works every time, especially when I can't just crash into bed like I want to!

I know LSD has been mentioned and I once watched a show on cluster headaches where one of the people they were featuring grew his own shrooms and would take them in pill form like...once a month or so to treat his cluster headaches.

If I recall it was an older gentleman with the mushrooms, right? I remember him being completely against drug use but just *could not*go on like he was.

Pretty sad he had to go against his morals but unimaginable pain will do that.

I remember seeing that, come to think of it! Also, in my totally arbitrary opinion he wasnn't 'doing drugs.' However, I'm not him and cannot reassure him of my feelings. Oh, well.

One thing that is a downside of living in America is that Tylenol 1/2/3 aren't available without a prescription, so if I ever get caught without my medication, (which will so never happen, luckily,) I'd be stuck with OTC migraine medications unless I could adequately convey the situation to a sympathetic pharmacist.

Percocet is considered a bad drug for headaches. For opiates and any other pain relievers, rebound often occurs if the med is taken more than two days per week.

Caffeine can help a migraine, but usually only when you are not a normal drinker. My son takes a Coke and lies down, and it works like a charm. If so, it can often make them worse.

Yeah, I don't drink caffeine at all, luckily. In my experience absolutely nothing causes worse rebound pain than morphine, it's an absolute nightmare.

Have you ever tried a therapeutic trial of indomethacin? Have you looked into hemicrania continua? It is a commonly missed diagnosis, even by neurologists.

http://www.migrainetrust.org/factsheet-hemicrania-continua-10920

Yes I have. I was very hopeful about it, too, as on paper it sounded like it could have been that, but I failed the differential diagnosis as I have shifting pain, loss of unilateral sensation, stroke-like communication breakdown, and loss of coordination. Thank you for posting that though, I think it is possible from some of the comments that I have read today that it is entirely possible that some Redditors may unknowingly be suffering from it.

Reading these some of these comments make me so angry because I can completely relate. I have suffered migraines my whole life. People just don't understand how extreme the pain is! If I didn't have extreme pain killers I would have killed Myself by now. I hope there is a cure for migraines in the future. For me and especially for you.

Thank you. Yeah, like you I wasn't aware how many Redditors we're in consultation with my doctors.

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I am very glad you don't have to either. I'm sure you have your own equally difficult stuggles in your life, but I find that focusing on your blessings helps everything feel better.

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I thought I was dying, too. That was still hands-down the scariest moment of my life as I was at the time too young to understand what was going on, even after it was explained to me.

I was a student intern at a small hospital in remote India and a traveler who unfortunately suffers from cluster headaches came to our hospital bc she was out of her meds. There was nothing we could do bc our hospital couldn't legally carry opiates. Felt so powerless.

That poor thing. I feel her pain more than I can explain. As I posted somewhere else in here, my HMO has me on an "ED Care Plan" to reduce their costs, which, by the way makes no sense for me as I am 100% covered for their services. I honestly think that much more than cost reduction there is a bunch of misunderstanding going on which leads some doctors to label anyone with chronic pain that is poorly or mismanaged an addict.

I sometimes experience migraines, but holy cow-- I'll never complain again!!

Have you looked at all into potential clinical trials for your conditions? I have other (relatively minor) health issues, and I found that seeing a different doctor can potentially provide new knowledge on treatments. I live in NH, but went to Boston for a second opinion; and I was more happy with healthcare there.

I have! I was actually one of the first juveniles to recieve Botox for it! I am completely open to investigating any new treatments.