Hi,
I'm Carole, from Ottawa, Ontario Canada, 55 years old and have been suffering with cluster headaches for about 5 years now. I'll give you a little background. 
For about 3 years I kept a journal of foods, weather, smoking habits but could never figure out what is triggering these CH's.
About 2 years ago, randomly decided to try the Breathe Strips, and amazingly was CH-free for almost 2 years until 2 weeks ago when they returned.
The length, intensity and duration has increased and and I'm at the point where I am very discouraged and unable to cope with this pain.
I was also taking 50 mg trazadone for the last 2 years, as a sleep aid, which was very successful to sleep.
Last week, Thursday, I went to a walk-in clinic, dr recommended doubling the trazadone and gave me a prescription for Tylenol #2.  CH's continued and possibly intensified over a 2 day period.
On Saturday, went to emergency at the hospital because I was unable to cope with the pain and lack of sleep.
Had a CT scan done, nothing appeared to cause any concern.  DR went over, in detail, the symptoms, duration and frequency of my CH's and at the end of 2 hours said "yes you are having CH's".  Prescribed 120mg of Verapamil, starting once a day for 3 days, then twice a day after that.  Also the dr was very concerned why I had continued to take the Trazadone for 2 years and recommended not taking that after 1 week on the Verapamil.
Started taking the Verapmil as prescribed on Saturday, CH's have continued, roughly every other night, starting usually after I've been asleep 90 mins to 2 hours and lasting approx. 2-3 hours+.
Stopped taking the trazadone on Thursday (2 days ago) as I figured I'm not sleeping with the CH's anyways so was anxious to find out of the Trazadone might be triggering the CH.
Thursday night slept 6 consecutive hours, no CH, no trazadone, last night, woke after 90 minutes of sleep with a CH that lasted from approx 11:45 pm until about 3 a.m.
That's my story.  I'm hoping to learn more about CH's, medications.
I'm especially interested in learning more about the preventative results of verapamil and how long this particular med normally takes to work.
Thank you :)

Welcome to the board. If possible you need to look into working with a headache specialist neuro. We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. They have started you on Verapamil, which is the most common first line prevent. It takes up to 2 weeks to begin working as a prevent. Some have to go as high as 960 mg a day to get relief. Topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents, including your verapamil, will take up to 2 weeks to become effective. He whould have put you on a prednisone taper, from 80 mg to zero over a two week period to give you a break while your prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go the meds section of this board and read the post "123 pain free days and I think I know why." Iit’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these. A really strong cup of coffee will do in a pinch.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

Clusterbusters.com

As far as figuring out what causes it, you'll drive yourself crazy there. 33 years and I still don't have a clue what starts or ends my cycles. Your breathe strip story is similar to several of mine. I "cured" my headaches by giving up coffee, they went away for 4 months, gave up using Q-Tips on the affected side, they went away for 4 months. Looking back I now realize the cycle was ending on its own. It makes the whole cause and effect thing so hard to figure.

While on cycle, do keep track of your triggers. For me, these are alcohol, (very common on cycle trigger for CH'ers) sleep cycle disruptions, sustained stress and extreme hunger. Avoiding these triggers won't eliminate hits, just reduces them.


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

If you have the option, find a headache specialist. Vast majority of docs, including neurologists, have limited education/experience with complex headache disorders.
All of the following may not work for you but will give some ideas re. searching.
----
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====
Print the PDF file, below, for your education and to use as a tool to discuss treatment options with any doc you see. This is the latest evaluation of common used meds.

---

Thank you Guiseppi for your reply and information.  It is comforting to know that there is someone (many someones) out there that understand this pain.  I hope people are around tonight at 1-2 a.m....not that I could tolerate looking at a monitor :(

I'm waiting for an appointment with a headache specialist neuro.  In a province that is very short on doctors, I've been without a family physician for 5 years now which is not helping the situation as no consistent physician is following me.  I go to the same walk-in clinic but see a different physician every time.

I'm only on week 1 of the Verapamil, so I guess I have to try to be patient and let it do its thing.

Oxygen, I am reading everything I can find on oxygen.  Will try to print the info page to bring to my next visit to the clinic, which should be Tuesday.

Energy drinks......I don't tolerate caffeine well, I will have to think about that.  I get very jittery and upset stomach if I drink more than 1 coffee.

Imitrex - I have prescription coverage through my employment so that's not a problem.  Getting a dr to prescribe it may be the problem (a little negative today).

I was thinking of getting some melatonin, I'm a bit hesitant to introduce/reduce too many things at once.....I guess I'm fooling myself by thinking I will find that 1 combination of meds/tricks that will work.  Working on about 90 minutes of sleep right now and still in my "CH hangover" state so not very clear or positive right now.

My biggest challenge right now is finding a family physician that is accepting new patients, spent several hours on the phone calling about 12 clinics......came up with nothing.  And waiting for a call back from neurologist.  In the mean time its about enduring, reading and trying to figure out how I can get my hands on oxygen!

Will read everything you suggested and will keep you updated.  Thank you again so very much.  Knowledge is power!

Thank you very much Bob.  Will continue reading.....and learning.........

I'd for sure get some melatonin and try that tonight. I haven't read any negative reactions to it, other then feeling lethargic in the morning. Start with about 9 mg, 30 minutes before bedtime.

Do you have any friends who do welding? Welding oxygen is the same as medical grade oxygen, comes out of the same big tanks. Many on this board have used welding oxygen for years as their abortive.

Joe

That you Joe,
I'm looking online for a welder, but no friends that have one but I will ask around.  On my way out to pick up melatonin for tonight.  Also some gravol, stomach is very queasy since last nights episode.  Took verapamil this morning with food, took it last night with food.  Probably no sleep isn't helping.
Does everyone dread night time and the "will I sleep tonight" "will I have another CH tonight" syndrome?  Not real conducive to getting any sleep at all, i.m.h.o......

Interaction question?  Are there any interactions with the melatonin and the verapamil?

Thank you

I don't believe so. Verapamil is one of the most common prevents, and many people on the board use melatonin with their verapamil, I've never heard of any issues. The only problems with verapamil is drinking too many energy drinks with it, as Verapamil and the Taurine in the energy drinks can cause heart issues.

Joe

Thank you again,
I have a very strong double espresso capuccino in the fridge, ice packs, melatonin.  I'm prepared for battle tonight!  Also have found a local supplier for oxygen tanks and am looking around for all the other parts that go with it, non-unbreathable mask, regulator, etc.

Update:  9 mg of melatonin taken right before bedtime, no cigarettes after 8:30 pm (plans to quit with laser treatment in the next week or so) and slept from 11 pm till 6:15 this morning.  Everything looks so much brighter after a decent night's sleep :)

That's some great news!

Joe

Night 2, went to bed very tentatively as I have been getting hit every other night.  Same regimen as the night before, exactly!  Felt that twinge about 90 minutes after I had been sleeping, got up right away, grabbed the double espresso capuccino I had chilling in the fridge and an ice pack and went to sit on the couch and started drinking it right away.

I still can't even believe it, but the twinge went away after maybe 4-5 minutes!  I'm praying that this combination of 240mg of verapamil, 9mg of melatonin and the emergency coffee is what I need to keep this beast at bay!

Will keep you posted on night 3......and 4!!!

As an aside note, I just lost both my parents, my Dad at 86 on September 16 and my Mom at 81 followed him on October 1st.  Preceded by my Dad's personal battle with Alzheimers and my Mom a strong fight with cancer and only a week after my Dad's funeral.  This recent return of CH's started for me the day after my Mom's funeral so to have this hit me when I have been trying to cope with the loss of both of my parents has shattered me.

You all cannot even imagine the gratitude I feel to be just 2 nights pain free!

[smiley=hug.gif] That's a bit of a full plate Carole, I'm so sorry for your losses.

Hoping your success continues. Those who don't have CH will never understand the euphoric feeling of waking up after one nights sleep without the beast! ;)

Joe

Not nearly as encouraged this morning :(  Woke up again 90 minutes after being asleep, dragged my butt out of bed, grabbed my chilled capuccino on the way, followed by little greyhound girl, Chai.  Twinge turned to peak within bare minutes while I tried to down the coffee and hold my eye and side of my head at the same time.  Forgive the whiny tone.

Although, the peak didn't last long, maybe 10-15 minutes, and I was able to go back to bed, which I haven't been able to do previously once this bastard (scuse my language) peaks.  Woke every hour on the hour, with no pain mind you and I'm not sure whether to blame the caffeine or the previous lack of sleep pattern I had before being prescribed Trazadone, which I am no longer taking on advice from the ER physicians.

The reason I'm discouraged is the lack of a family physician.  In this province (Ontario) you are lucky if you are put on a waiting list for an appointment in 6 months, that is IF the physician is accepting new patients.  I don't know when I am supposed to start increasing my dose of verapamil from the current 240mg to.....? and when.....?  So my option is going to the same walk-in clinic and sitting there for hours to see yet a different physician, explain my story, etc. etc.

I tried the OUCH site, one of the 2 dr's returned my call and said I must have the wrong doctor.  Still waiting for a call back from the 2nd and from the neurologist that I was referred to from the hospital.

signed
very tired, very grumpy and very discouraged in Ottawa  :'(

Progress, slept well, 10-6 (thank you God) and feeling much more positive this morning. Pain+lack of sleep is not a good combination, as you all well know, for any kind of good mood.

Have finally secured a family physician, first appointment is Nov 3rd, so I'm hoping to have her monitor an appointment with a neurologist, increasing verapamil and hopefully a prescrip for O2.

Hi Carole. I've been following your progress and it's great you have a new app't. You have a good plan. The O2 will help tremendously and you won't be hitting your sleep patterns with caffeine. We all know the dread of falling asleep only to wake up right at REM time with a bad hit. It's something you learn to live with and make up for lost sleep when we can. The verapamil dose you are on is low and hopefully an increase will help push the beast away. I have not found any interactions between verapamil and melatonin. Many of us have reported rather intense dreams while on high doses of melatonin, as have I, but those subsided (mostly) when I dropped from 15mg to 10mg. Good luck, God bless and keep posting. lance

Thanks for your support Lance,
I know there are many different things out there to kick this, it's just finding the right combination.  I hope to be smoke-free in a few days also so I'm hoping that will have a significant effect.

So far I'm just taking 9mg of the melatonin and no dreams, had a few of the side effects when I started the verapamil though, I could hear my heart beat all the time for a few days and was a little dizzy when getting up too quickly but those have all subsided and I feel fine, really.  The good thing though is the CH's have decreased in intensity and the 1 or 2 episodes that I have had, with the help of the very strong coffee that I'm keeping in my fridge at all times, seem to be helping.  The other night I even stuck my head in the top freezer on my fridge and inhaled deeply for about 3-4 minutes and that seemed to help until I was freezing to death!  ;)

So all in all I do feel encouraged...until I wake 90 minutes after I've been asleep with that dreaded twinge!

I will keep posting with updates and thanks again for the support and understanding, this forum has made a huge difference in the way I feel about these CH's.

Easy to say Carol, but hard to do....be patient and try not to get too frustrated. the early stages of establishing an effective treatment regimen are hard, but so worth the effort. After 33 years I finally have a good handle on what works best for me. My wife and i were joking recently that we can't remember the last time I had a KIP-10 attack. That's a neat feeling knowing the beast doesn't control my life anymore. Hoping you find that same relief soon.

Joe

Well so far so good (whispering), taking the 9mg of melatonin every night and so far yes I'm waking up with that twinge but I'm getting up right away, starting on my coffee and the twinge is only lasting 5 minutes or so and I'm able to go back to bed and go back to sleep.

Thank you all so much for the tips and support.  I never would have tried melatonin or coffee but these seem to be stopping the CH from becoming full blown and for that I am beyond grateful.

Will keep you posted after dr appointment.

Crossing my fingers that the good news keeps coming Carole.

Joe

Hi Carole and welcome.
The night hits are something most of us deal with. As soon as you can get your O2 set up correctly, your fear should diminish greatly. Just knowing you can knock the beast out in a few minutes anytime he appears will go along way to bringing comfort, and much less pain too. Melatonin, then O2 instead of caffeine will make for more comfortable nights.

Well, the beast reared its ugly head last night.  Started at 10 and finally subsided after midnight.  I tried everything, coffee, ice pack, even stood with my head in my overhead freezer for about 1/2 an hour and nothing worked.  Finally walked it off pacing for about an hour.

Had KFC for dinner last night and just checked the ingredient list and MSG is in both the chicken coating and the gravy.  Not sure if that might have triggered it but no more fast food for me.  The last really bad one I had before I started my new regimen I had eaten hot dogs......nitrates :(

CaroleA wrote on Oct 29^th, 2011 at 8:33am:

Well, the beast reared its ugly head last night.  Started at 10 and finally subsided after midnight.  I tried everything, coffee, ice pack, even stood with my head in my overhead freezer for about 1/2 an hour and nothing worked.  Finally walked it off pacing for about an hour. Had KFC for dinner last night and just checked the ingredient list and MSG is in both the chicken coating and the gravy.  Not sure if that might have triggered it but no more fast food for me.  The last really bad one I had before I started my new regimen I had eaten hot dogs......nitrates :(

CaroleA,
Hope this reply finds you a bit better than what i've read you've recently been suffering.  Check out this link about food.  Spme experts on this site have shared w/ me that your PH (acidic foods/Alkaline foods) have much to do with CH's.  May be worth taking a look at.  PF wishes to you ;)

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thank you for that link.  I know I'm probably barking up the wrong tree trying to figure out what is triggering them, some days I do believe they come when they want and go when they want but....another part of me wonders.....

In the meantime, I will cut all fast food, not that I eat a lot, and I'll be reading the ingredients a little more closely and see.

Last night was a completely PF night, no twinges, nothing. Insert big smile here, I feel human today  ;D

Very anxious, just had my appointment with a neurologist confirmed for tomorrow.  Any tips/suggestions/advice?

CaroleA wrote on Nov 1^st, 2011 at 1:53pm:

Very anxious, just had my appointment with a neurologist confirmed for tomorrow.  Any tips/suggestions/advice?

Make a list of all the questions you want to ask, points you want to raise and what results you'd like from the appointment. It's so easy without a list to forget to ask something!

Hope it goes well and you get the outcome you're looking for.

CaroleA wrote on Nov 1^st, 2011 at 1:53pm:

Very anxious, just had my appointment with a neurologist confirmed for tomorrow.  Any tips/suggestions/advice?

Print off some info and drop it off today if possible, so the dr has potential time to revierw before your appt.

Unlikely your dr will read something you hand him/her on the spot.

Bring a headache diary if you have one...how often you get hit, what times of day/night, how long each attack lasts, if you used something to abort the attack and if so what helped, known triggers, etc.

Be knowledgeable on CH's so you don;t solely rely on the dr knowledge, or commonly lack there of.

Discuss abort---high flow o2 with non-rebreather mask.
Also tryptan drugs to abort such as Imitrex injections and nasal sprays.

Discuss Transitional and Preventative....such as a Pred taper as a transitional while starting a Preventative such as Verapamil.  Be familiar with common dosages of each so you don't get stuck with a script for something ineffective for CH's.

I'm sure others will chime in here with advice before you go tomorrow.  Congrats on getting an appt, hope it is everything and more to help you.

"Knowledge is Power" ;)

THank you all so much for your advice and support and help with my list of questions and things to bring.  I have been keeping a diary since this last cycle started, which is the worst by far I've had in 5 years.

I do have a list of questions, lots to do with meds (not a huge pill person, but I'm learning quickly).  Oh, just started to have weird dreams last night (which was PF) so I will ask about that and the Melatonin.

Anxious to get this appointment under my belt and then my new family physician on Thursday.

I want to be a science project!

Also, don't forget to ask for free samples.

Free samples!  Check! 
Off to the head doctor, will have a full report later today  :)

Crossing fingers and toes that you catch a good one this go round.

Joe

Had one of those crazy busy days.
So here's the scoop.  The neuro dr was very understanding and supportive, and seemed to be quite knowledgeable on the topic of CH's.
Gave me a thorough examination, to rule anything else out, and I'm very healthy, heart rate, blood pressure, eyes, etc..

Was very interested when i told her about this message forum and all of the things I have learned i.e. caffeine at the onset and even suggested I switch from espresso type coffee to a breakfast blend as espresso is lower in caffeine.

She recommended keeping me on the dose of verapamil that I"m on now, 240 mg, as it seems to be working but she also suggested that I could be at the end of my cycle.  But she assured me that many people have been successful in preventing outbreaks on a 240mg dose.

So far so good......she talked about triptan drugs and asked me how I felt about it and I felt that I would like to stick with the verapamil for now (fingers crossed and knocking on wood) but she left the decision up to me.  I'm kind of a non-pill type of person and felt comfortable without prescriptions for that.

Then we talked about oxygen.  She was honest and told me that she has only heard of people being administered oxygen when they present themselves at emergency.  Something I don't want to do mainly for the reason is that I would either have to call 911 or ask a family member to drive me to the hospital in the middle of the night.  I highly doubt I could get behind the wheel of my car in the middle of a CH.

So she is going to look into the O2 and will follow up with me.  Renewed prescriptions for 3 months for the verapamil and another appointment in 3 months to see her.

But I think I am going to go the route of getting it myself.  I have no idea if this is the end of my cycle and when this beast will rear its head again.  Tonight perhaps?  Tomorrow night?  And I just can't deal with this kind of pain much longer.  Not only that but the stress of going to bed and worrying about whether or not I'm going to wake up in pain is disrupting my sleep.  I'm seeing pretty much every other hour on the clock most nights.  Even the PF nights.

So she prescribed something for sleep "Elavil" a very low dose 10mg.

All in all, with the exception of not really getting anywhere with the O2, I think it was a good visit, if anything to have this validated by a specialist and also to know that there is nothing else wrong with me physically.

So tomorrow is my first appointment with my new family doctor.  I will talk to her about O2 also and see where I get with that.

Thanks all for helping me with questions and advice for my first visit.

Hoping for a PF night tonight.

Sounds like a good result.

Do go ahead and get oxygen. It's amazing for killing off a CH quick. Even if you are getting towards the end of a cycle, knowing it's there, ready and waiting for whenever the beast arrives is priceless.

Mike NZ wrote on Nov 2^nd, 2011 at 11:00pm:

Sounds like a good result. Do go ahead and get oxygen. It's amazing for killing off a CH quick. Even if you are getting towards the end of a cycle, knowing it's there, ready and waiting for whenever the beast arrives is priceless.

I agree with exactly what he said, congrats, and good luck tomorrow

Had my first visit with my family doctor today, and it was equally as great!  She is going to find out about getting me the oxygen, non-rebreather and regulator with a prescription, which would cost me little as opposed to buying it myself.

Also she is going to refer me to a sleep clinic, just to see what's going on with my sleep patterns.

Same recommendation with the meds, so all in all another good visit.

That's great news, I know it can seem like a long, grueling journey, but all the work you're putting in now pays off big time. I'm sure from reading the boards you're catching on to the fact this will probably hang around the majority of your life. The key is always being prepared. Get the oxygen now even if your cycle is dying down. become familiar with how to obtain everything you'll need and how to use it.

When my cycle starts I have 2 phone calls I make. To my neuro to make another appointment. With this first call he renews my 02 prescription and any med prescriptions I'm low on. My second call is to APRIA to get more tanks delivered. I have my own demand regulator, so off cycle I just keep one E-Tank, which gathers dust in my garage. On cycle I keep an 8pack of tanks handy. So literally the same day my cycle starts back up, sometimes the next day, I'm set back up again to battle the beast.

Joe

Carole,

I'd just like to add some things.  Your Verapamil dose is VERY low.  Most here get much more relief from a higher dose.  Assuming you don't have another medical reason for taking such a low dose, I would ask my Dr. to up it by at least twice.

To get medical 02 you MUST have a prescription.  Any doctor with an M.D. after his name can give you one.  You can't just go buy it yourself, as you said.  Now if you're talking about welders 02, that's a different story.  There is a link (in yellow) to the left of here regarding just about everything you need to know about 02.

One other thing.  Having 2 doctors who are supportive, understanding and knowledgable is HUGE!!!  If you read around here for any length of tim e you will see posts that say.."My doctor is an idiot"  "My doctor doesn't have a clue"  "My doctor told me I don't have CH because I'm a woman"  I could go on and on, but I'm sure  you get my message.  ;)

Linda

Hi Carole: I am so sorry that you have to deal with the BEAST, (and some times almost as bad as the BEAST, living with the FEAR OF THE BEAST!!!)  But selfish me it is nice to see someone from the Ottawa area on the website.  I lived in Ottawa for about 5 years and just moved to Brockville about 7 moths ago. but still get up to Ottawa 4 or 5 times a month.

I have lived with the BEAST for 15+ years now,  I would not be much help to you with the treatment and medical side of things but  would like to just offer you what ever support I can. Some times it is just nice to talk to someone who KNOWS what you are going through first hand because they have been there.

may you have many many pain free days in your near future   Ed  Arnycay

Linda, after reading lots here, I did feel that the dose I'm on is very low and mentioned it to both the neurologist and my family physician.  They both said that seeing as this dose is working but acknowledged that I also may be at the end of this cycle, that we would stick with this dose.

Also, I've been nitrate and msg free for 5 days now and am very happy to report that I am 5 nights now Pain Free!  Now I'm aware that I could be out of my cycle and that the beast could rear its ugly head again.  My son actually suggested "if you want to find out if it's additives that is triggering the headaches, maybe you should eat something and see".  Not that I want to bring on a CH but he's got a point.  I may do that on the weekend.  The last twinge I had was on Tuesday night after eating a bag of microwave popcorn and the coffee held that twinge off and in 5 minutes it was gone.

So......I really do feel like I'm on the right track and I say that very tentatively because I know that could literally change overnight.

I am extremely grateful and relieved to have not 1 but 2 doctors who understand these awful headaches and are doing their best to keep me pain free. 

Hi Ed, thank you so much for your kind words and support :)

Will continue to keep posting on pain free nights to come.  Thank you everyone, again I will say, just having a place to come to see what works for people has been such a huge help for me.

CaroleA,
So wonderful to read you are PF these past 5 nights. :D

Whatever you are doing...avoiding triggers, etc...keep it up for AT LEAST 2 weeks of being PF, then you might consider talking with your doctorS about reducing meds, and trying your son's hypothesis.

Congrats ;)

Quote:

Will continue to keep posting on pain free nights to come.

Please DO Carole.  All of us here love nothing better than hearing success stories or just when someone's cycle is over and done with.  Please stick around after that, so you can read some more, learn how to stockpile for the next cycle, and maybe just help a newcomer out.   Have you ever watched the movie "pay it forward"?    ;)   

I have watched "pay it forward", it's one of my all time favourites actually, so I'm not going anywhere :)

Linda_Howell wrote on Nov 7^th, 2011 at 5:40pm:

Quote: Will continue to keep posting on pain free nights to come. Please DO Carole.  All of us here love nothing better than hearing success stories or just when someone's cycle is over and done with.  Please stick around after that, so you can read some more, learn how to stockpile for the next cycle, and maybe just help a newcomer out.   Have you ever watched the movie "pay it forward"?    ;)

Thoughtful and caring Linda is "pay it forward"  ;)

That's great news Carol. As to the nitrate/MSG triggers, smart to avoid them on cycle. It's like alcohol for me, on cycle it's a nasty trigger. Off cycle, doesn't bother me at all. I do the "Beer Test" after about 2 pain free weeks to confirm the beasty is really gone. Hoping he's left for this cycle.

Joe

Very happy to report that I have enjoyed 9 pain free nights!  Tonight I may do the "nitrate" test and make myself a peperoni pizza.  Part of me wants to see if this is what has triggered these CH's part of me wants to enjoy another PF nights sleep.

Will keep you posted.

LasVegas wrote on Nov 7^th, 2011 at 11:47am:

CaroleA, So wonderful to read you are PF these past 5 nights. :D Whatever you are doing...avoiding triggers, etc...keep it up for AT LEAST 2 weeks of being PF, then you might consider talking with your doctorS about reducing meds, and trying your son's hypothesis. Congrats ;)

WOW, 9 nights PF :)  You must feel ecstatic! 

Personally I would wait as I noted previously, but that's your decision.  Good Luck! ;)

Hello Carol.  This site has helped me a number of times over the years...follow their advice.  I also avoid "triggers" while I am in cycle (nitrates, etc) and for awhile after my cycle is over.  I don't want to risk a relapse.  Nitrates are not the cause of your clusters, but they certainly don't help! 

I have oxygen prescribed by a doctor here , but am having ongoing problems with my supplier.  Oxygen has been a sanity saver for me. 

Took your advice Vegas and decided to have another nitrate free dinner and opt for a great nights sleep :)

If it's not broke, don't fix it ;)

Hi Carole,
It's been 1 week since you posted on this thread and am curious what toppings did you enjoy on your well deserved pizza?  ;)