Migraine/Cluster Headache remedies?

KM43590 · February 2011

This isn't Pearl Jam related, but I've run out of places to turn, and I'm looking for any suggestion to help me out!

So I've been suffering from what have been diagnosed as "cluster headaches" for almost a year and a half. I've been waiting 2 weeks to hear back from a headache specialist just to make an appointment, because they've become unbearable. I had a brain scan back in August after seeing a neurologist, and nothing came up on the x-rays.

My problem is I've begun getting dizzy throughout the day, can't focus on much and haven't been able to get to work in 2 weeks because of they are so painful. Of course my employer and coworkers are getting mad, because they think I'm just being lazy, because for the past 5 years I've had some sort of medical emergency or trouble that has kept me from working an entire year straight through.

I've been sick all my life and I'm trying to be patient waiting to get medical advice, but there is no end in sight. I've tried every (over the counter) pain medication there is, and even a few Xanax's, because I'm getting stressed out. The last time I went to E.R. because of this, and I was told "A headache isn't an emergency, and there's nothing they can be do, and that I was just overreacting" and all they did was charge me $400 for 2 Tylenol, which didn't work anyway.

So from what I've read on the internet, Cluster Headaches are a rare form of Migraine, they affect 1 in every 1000 people. And I'm wondering if anyone out there has had these damn things, and what would you suggest? I've just been trying to rest and popping "Excedrin Tension" like candy... I know if I could smoke some pot I'd be perfectly fine, but I've been clean and sober for a year, and my work place is becoming more strict with their random drug testing, so that's not an option either. :?

Any ideas? Please help, thanks friends!

u2gator · February 2011

Part of the effectiveness of medications and other therapies in general is the mental idea that it is going to help. You seem to already think (or know) that pot helps you so there is the slight chance you are not really giving anything else a fair shot mentally.

It could also have to do with your ability to sleep/rest properly. If you have not done so already, request from your doctor a sleep study so that you can be properly tested for sleep apnea. Lack of sleep can have a major impact on how the rest of the body functions and most people with sleep apnea have no idea they have it or the impact it can have on them physically.

You could also try accupuncture if you have not tried it already as many people see positive outcomes after treatment. Again part of the experience thoug is the idea that it is going to help.

Best of luck.

pjtradeking · February 2011

I dont know all the details, but my sister went through this kind of thing some years ago and they found that putting her on oxygen seemed to really help her. Maybe try that? Or at the very least, ask your doctor if it is worth a try. Good Luck!

jg1988 · February 2011

Ask for a prescription of Midrin.

regalturbo · February 2011

True cluster headaches stay on one side of the head and have lots of tearing in that eye. If your headache has been there most days for over a year, it's more likely a migraine/tension headache. It can take patience and many months of working with a headache doctor (neurologist I presume?) to get these under control but there is help. Midrin can be a great medicine. I would also write down every medicine you've taken for this (prescription or over-the-counter) so the doctor can hit the ground running. Sometimes daily headaches are made WORSE by using ibuprofen or acetaminophen (Tylenol) so as hard as it seems, you do should not be taking this on a daily basis or the headache can rebound. Accupuncture is worth a shot if done by someone well qualified. As you get more control of the headaches, a "headache diary" can be helpful if you write down where and what you did right before a headache starts so you can find potential triggers. Don't lose hope, I've seen people get really good results with neurologists.

Steve Dunne · February 2011

i have suffered from these for over 20 years. i haven't had an episode, however, in 2 years. hopefully i'm growing out of them. but once they hit, it's a month from hell, where i get a cluster headache every 12-24 hours for 3-4 weeks. i've head sinus scans, cat scans, etc, and been on just about every medication for these (oxycontin was my personal favorite!!!)

anyway, what's worked for me has been taking Zomig nasal spray. it pretty much numbs the head after a few minutes. sometimes, if i don't catch it time, i have to wait about 30 minutes and then take another shot of nasal spray. this is not recommended, but it's numbed me to the point of stupidity, but takes the pain away. then i go to sleep. the zomig is quite expensive, so be sure your insurance covers it. i've had to petition blue cross a few times to get the amount of zomig needed to cover my episodes. i have a stockpile of them now, and if my cluster headaches come back, then i'll at least be ready.

good luck!

VinylGirl · February 2011

I have suffered with chronic daily headaches and migraines for 20+ yrs now and have been on many different meeds (both preventative and abortive). I know how frustrating it can be especially when most people dont undersand what you are going through.

It sounds as if you have gotten into a cycle of rebound headaches, which you need to break.
You need to stop the excedrin- it is known to cause rebound headaches. It is important to catch the headache early on, it is usually easier to get under control.

As mentioned by someone else, start a diary. Include what and when you eat/drink, when the headaches begin, where they are located and the intensity. You may be able to figure out what is triggering your headaches this way. Bring the diary with you to your appt, and let the dr see it. They may be able to pinpoint your triggers.

Good luck and I hope you beginto feel better soon. I didn't really get into too may details here, so feel free to pm me if you'd like.

Johnny Aggro · February 2011

My sister has recently been diagnosed with having Ischemic Lesions on the brian caused by Migraines. Nothing to majorly worry about, but an MRI scan is adviseable to detect.

She has now been prescribed Amitriptilyne. to stop the headaches and any further lesions.

Hopes this helps

RedMosquito22 · February 2011

KM43590 wrote:

This isn't Pearl Jam related, but I've run out of places to turn, and I'm looking for any suggestion to help me out!

So I've been suffering from what have been diagnosed as "cluster headaches" for almost a year and a half. I've been waiting 2 weeks to hear back from a headache specialist just to make an appointment, because they've become unbearable. I had a brain scan back in August after seeing a neurologist, and nothing came up on the x-rays.

My problem is I've begun getting dizzy throughout the day, can't focus on much and haven't been able to get to work in 2 weeks because of they are so painful. Of course my employer and coworkers are getting mad, because they think I'm just being lazy, because for the past 5 years I've had some sort of medical emergency or trouble that has kept me from working an entire year straight through.

I've been sick all my life and I'm trying to be patient waiting to get medical advice, but there is no end in sight. I've tried every (over the counter) pain medication there is, and even a few Xanax's, because I'm getting stressed out. The last time I went to E.R. because of this, and I was told "A headache isn't an emergency, and there's nothing they can be do, and that I was just overreacting" and all they did was charge me $400 for 2 Tylenol, which didn't work anyway.

So from what I've read on the internet, Cluster Headaches are a rare form of Migraine, they affect 1 in every 1000 people. And I'm wondering if anyone out there has had these damn things, and what would you suggest? I've just been trying to rest and popping "Excedrin Tension" like candy... I know if I could smoke some pot I'd be perfectly fine, but I've been clean and sober for a year, and my work place is becoming more strict with their random drug testing, so that's not an option either. :?

Any ideas? Please help, thanks friends!

A lot of headaches are caused by stress(I know we can't avoid it) but maybe trying yoga to release stress might help. I know it might be hard to find time but it really is relaxing.

Also try a chiropractor. I was getting a lot of headaches after I wrenched my back and started going to a chiropractor. Not only was my back getting better but my headaches are pretty much gone too.

I hope you get better. Keep us updated on what you try and if anything is working.

KM43590 · February 2011

Thank you all, for your suggestions and helpful tips. Since these episodes have started, I've been in quite an emotional funk, so my mental state hasn't been too positive and that probably is partly to blame. I also forgot to mention that I do in fact have a sleep apnea and have been using the c-pap machine every night since October, and that did stop my headaches for quite a while, but the ones I've been having recently are different. They're just on one side of my head and they happen throughout the day at different times at different intensities. My regular doctor is running out of suggestions and I'll be calling another specialist today to see what they think. I've been a medical mess for the last 5 years and I feel like I'm running out of options. I just wanted get some other opinions. Thank you so much for your help friends! I'll try to keep you posted on any further details.

veddertown · February 2011

This could be a coincidence but I've been suffering pretty frequent migraines since I was 16 (almost 24 years) and I made a decision to cut out as many of the controllable known triggers as I could. Stopped smoking on Halloween 09, stopped eating cocoa products and anything else I was told may be a trigger. Still I kept getting these occasional headaches and all the symptoms that come with a migraine. Last October after a bad alcohol incident I decided to leave it out too and if anything my headaches got worse but I didn't get any decent advice from any of the doctors I visited. Last resort was at Christmas when I decided if I was going to have a headache anyway I may as well enjoy a festive drink regadless. Anyway, over the festive holidays I noticed the headaches were less severe and a lot less frequent so every night or two I've been having a measure of port an hour before bed and no headaches. On a recent trip to the doctor I mentioned this and she told me there weren't many circumstances where they would encourage drinking alcohol but as it thins your blood and increases blood flow it serves the same purpose as an aspirin would and in moderation is an acceptable medication for many ailments. Getting enough sleep is a big key to controlling headaches as is frame of mind. If you think the headaches aren't going to go away they probably won't throug raised stress levels and also as RedMosquito22 said, seeing a chiropractor if you have any tension around your neck and back (especially upper back) will help but don't let them dictate how many treatments you need. If you feel like the situation is getting slowly better then by all means make a repeat appointment but it takes very little to release a lot of tension and chiropractors will always encourage more treatment than actually neccesary to keep the bucks rolling in. I don't know anything about yoga but have only heard good things about it and also acupuncture is highly recommended if you have that service available. I'll send you a really interesting link about migraines if I can find it for you. Hope it gets better but positive thinking will really help during whichever avenue you decide on.

orangedive · February 2011

I've been dealing with these recently. The doctor prescribed Relpax, and it has worked really well. I highly recommend it--no side effects whatsoever.

Like others have said, the big trigger for me is lack of sleep. If I don't get a decent night's sleep, I am almost guaranteed to get a serious headache. It's really important to go to sleep at the same time every night too.

RKREK · February 2011

I have suffered from migraines the last six years. After seeing a doctor and trying different types of meds, I have found that Relpax has worked well for me over the last couple of years. When I feel a migraine coming on, I take a Relpax and it usually disappears in 10-15 minutes.

Roscoe28 · February 2011

Have you had an MRI scan ? I had similar symptoms to you, had an MRI, and was diagnosed with a Chiari Malformation - which causes symptoms similar to yours. They can be monitored if the pain is not debiliatating, but may require surgery to fix.

curmudgeoness · February 2011

You did not say if you are male or female. I know, most people on here are guys, but some of us are not.

I never found over the counter remedies that helped. I've had migraines for more than 30 years. Relpax helps me, although it can take two hours to kick in. Imitrex was a lot faster, but I felt as I was having a heart attack when I took it, so I opted for slower relief and less terror.

Sleep can help, although it needs to be a lot of sleep (12 hours or more); I've woken up w/migraines, though, and those really, really suck.

If by chance you are female, PM me and we can go over gender-related issues that might be triggering your headaches.

starmap3333 · February 2011

I began having headaches 2 years ago and they were diagnosed as tension headaches. Are you under a lot of stress? If your CT scan came back negative you're fine... except you have the annoying, and sometimes debilitating, task of dealing with the pain these headaches cause.

I was initially written a script for Fioricet which is a low dose barbituate with caffiene and codiene. This sort of helped but it was more like getting hooked on pills all over again. My PCP wrote these for me but, when I went to the neurologist, he said discontinue them immediately and begin with this stuff called Nortriptyline.

Before I began the drug I researched it and it was said to be primarily used as an anti-depressant. I immediately was skeptical and decided not to take it and still had these headaches. I hated my job, I was going through a full blown life upheaval... whole sale changes in every domain.

I did find it is used to treat headaches of varying degrees as well. So I started taking it. I get an occasional headache but they are gone for the most part and maybe I did need the anti-depressant properties that it provides as well. It is to be taken at bedtime... the first few weeks they'll say start with 10 mg and work up to 50 if needed. So I ended up only needing to take 30 mg for them to be effective and after a few weeks they do not cause you to be tired at all and you feel refreshed in the morning.

You seem negative and unwilling to allow positive thinking a chance regarding diagnosis and treatment. THAT'S FINE. I'M THE MOST NEGATIVE MISERABLE FUCK on the planet and I don;t expect much and never get let down... but these did help me immensely.

I used to be a social worker until I tanked for all it's worth and have some experience with the medical field to varying degrees. Based on what you say... you're anxious and pot helps. Anxiety can cause rise in blood pressure which can cause headaches. It doesn;t mean you have hypertension it means your blood pressure goes up when your heart works harder from the fight or flight response that the body naturally conducts Tolerance to xanax can be built quickly and then they do not work anymore... they'll lead to other heavier duty drugs you do NOT want to be trapped or addicted to/with. Whoever mention oxycontin and trying that... ignore that advice. Period. You sound like you would be a candidate for a PRN of .5 xanax or 1.0 ativan's. Furthermore the anxiety itself is indicative of something deeper that needs to be addressed. Sounds stupid but utilize counseling but find one you at least FEEL listens to you and takes you seriously. I promise it'll help. In the meantime you can pop a pill AS NEEDED when you are experiencing high levels of anxiety so you can chill out. Your blood pressure could go up when you're anxious which could also cause headaches. I know this is a lot but you asked and this is something I know something about so...

Regarding workplace drug testing... if you have a doctor's prescription for the drug your employer cannot consider that illicit drug use... UNLESS THEIR POLICY STATES SO (nurses, doctor's, etc are held to higher standards I suppose regarding drug.alcohol use).

Hope this helps.

Peace and good luck...

Black73 · February 2011

You mentioned your employer is giving you some grief...if you've been employed for at least 12 months, you've worked at least 1250 hours in the past 12 months, and your employer has 50 or more employees within a 75 mile radius, you might be covered by Family & Medical Leave Act (you have to be diagnosed and meet leave eligibility). This provides up to 12 weeks of excused medical leave (continuous or intermittent) to treat serious health conditions for either you or a covered family member. Serious health conditions, among other terms, were vaguely defined by, you guessed it, the US Government, so you likely won't find a detailed list of ailments. Just didn't want you to think I was being overly vague with you.

At any rate, once you've got a diagnosis, it may be worth asking your employer for an FMLA request form, which your doctor will need to fill out. I'm leaving out a bunch of info on FMLA...it's worth researching: http://fmlaonline.com/ I've reviewed this site and it's a pretty good "FMLA 101" site.

Good luck - hope you're on the good side of health soon. I get migraines rather infrequently, so I have no prescribed meds for it. I find when I start to lose visual focus, I slam as much water as my system will accept, pop 2 Excedrin Migraine tabs, shut my eyes, and within 15-30 minutes my sight is back to normal and the head pain is bearable.

PearlOfAGirl · February 2011

Zomig works for me...

Steve Dunne · March 2011

my cluster headaches are back after a two year absence. zomig was doing the trick, as my headaches were coming every 12-24 hours. went to doc on monday and got prednisone and oxycontin. still not out of the woods yet, but headaches have subsided. now i'm in a constant buzz/funk. would rather feel like that than have a headache though.

Cree Nations · March 2011

KM43590 wrote:

This isn't Pearl Jam related, but I've run out of places to turn, and I'm looking for any suggestion to help me out!

So I've been suffering from what have been diagnosed as "cluster headaches" for almost a year and a half. I've been waiting 2 weeks to hear back from a headache specialist just to make an appointment, because they've become unbearable. I had a brain scan back in August after seeing a neurologist, and nothing came up on the x-rays.

My problem is I've begun getting dizzy throughout the day, can't focus on much and haven't been able to get to work in 2 weeks because of they are so painful. Of course my employer and coworkers are getting mad, because they think I'm just being lazy, because for the past 5 years I've had some sort of medical emergency or trouble that has kept me from working an entire year straight through.

I've been sick all my life and I'm trying to be patient waiting to get medical advice, but there is no end in sight. I've tried every (over the counter) pain medication there is, and even a few Xanax's, because I'm getting stressed out. The last time I went to E.R. because of this, and I was told "A headache isn't an emergency, and there's nothing they can be do, and that I was just overreacting" and all they did was charge me $400 for 2 Tylenol, which didn't work anyway.

So from what I've read on the internet, Cluster Headaches are a rare form of Migraine, they affect 1 in every 1000 people. And I'm wondering if anyone out there has had these damn things, and what would you suggest? I've just been trying to rest and popping "Excedrin Tension" like candy... I know if I could smoke some pot I'd be perfectly fine, but I've been clean and sober for a year, and my work place is becoming more strict with their random drug testing, so that's not an option either. :?

Any ideas? Please help, thanks friends!

I saw a special on this on TV recently.....the only thing that seemed to work for some of the patients was straight oxygen.....have you tried this?

Steve Dunne · March 2011

just yesterday my doc mentioned this. if my Rx doesn't do the trick, then straight oxygen will be the next step.

Migraine/Cluster Headache remedies?

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