Clusterbuster newbie

[Mel98]

Hey, all! 

I’m mel and I’ve been a cluster headache sufferer for about 5 years now. I’m probably a young one in here- nearing 20 in August!

the past month or so has been...hell to say the least. It seems I get at least 1-2 clusters a day now and with it being so humid outside, it only intensifies. Currently I am in no sort of meds because they just picked back up. Nortriptyline made me gain a lot of weight, and my preventative gave me rebound headaches. 

I feel as though I’m at a loss. I’m just now recovering from one at the moment, and am just exhausted. My mom has pegged my doctor about prescribing me oxygen, as she’s heard it’s been successful with clusters. Does anyone have experience with oxygen therapy for the headaches? I’d love to her your personal take on it. Luckily, I have an appointment with my doctor today at 3 pm, hoping for the best! 

-Mel

[Dallas Denny]

Welcome to the community young man!

Oxygen WILL change your clusterhead life Mel!  I typically abort attacks in 10 minutes or less!!

Docs and suppliers can often times be a pain in the arse though.....script needs to be worded thusly...."oxygen therapy for cluster headaches @ 15 lpm delivered via non rebreather mask".....most of the masks suppliers have are crappy but you can get one made specifically for clusterheads in the store at our sister site clusterheadaches.com for around $30!

Dallas Denny 

[MoxieGirl]

Hi Mel,

Welcome to the family, sorry you have to be here.

Caffeine is good too; coffee, energy drinks like Red Bull, Mt Dew, etc. I find a cold drink works best, and usually have an energy drink in the fridge. 

MG

[Mel98]

8 hours ago, Dallas Denny said:

Welcome to the community young man!

Oxygen WILL change your clusterhead life Mel!  I typically abort attacks in 10 minutes or less!!

Docs and suppliers can often times be a pain in the arse though.....script needs to be worded thusly...."oxygen therapy for cluster headaches @ 15 lpm delivered via non rebreather mask".....most of the masks suppliers have are crappy but you can get one made specifically for clusterheads in the store at our sister site clusterheadaches.com for around $30!

Dallas Denny 

Thank you so much! And mel is short for melanie- aka I’m a woman but that’s ok! I should have specified lol! I’m in my dr’s office right now, papers in hand. I just hope she will approve the prescription!!

[CHfather]

Hope you get that O2!  Let us know, and let us know specifically what else the doctor prescribes.

Start the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Check your triggers (MSG is a big one for many people, and young people tend to eat a lot of MSG, in things like ramen dishes (Cup O' Noodles, etc), flavored chips, etc.). https://clusterbusters.org/forums/topic/4568-triggers/

Try an energy shot such as 5-Hour Energy at the first sign of an attack.

Allergies tend to flare up CH, particularly at times of year when there's a lot of pollen.  Some people find that regular doses of Benadryl (25mg 3 times a day and 50mg at night) helps a lot.  It'll probably make you quite drowsy, though.

 

[Mel98]

3 hours ago, CHfather said:

Hope you get that O2!  Let us know, and let us know specifically what else the doctor prescribes.

Start the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Check your triggers (MSG is a big one for many people, and young people tend to eat a lot of MSG, in things like ramen dishes (Cup O' Noodles, etc), flavored chips, etc.). https://clusterbusters.org/forums/topic/4568-triggers/

Try an energy shot such as 5-Hour Energy at the first sign of an attack.

Allergies tend to flare up CH, particularly at times of year when there's a lot of pollen.  Some people find that regular doses of Benadryl (25mg 3 times a day and 50mg at night) helps a lot.  It'll probably make you quite drowsy, though.

 

I walked right in, told her my headaches were back and then I mentioned the oxygen, to which she dismissed right away. She claims that my insurance doesn't cover it, and although my mom is more than willing to pay in full, that they aren't able to fill the prescription unless insurance covers part of it? I was crying the in the office, feeling extremely hopeless. I told my mom who called my insurance immediately- they DO cover oxygen therapy specifically for cluster headaches! 

My conclusion? My doctor is a bitch- a clueless one at that. Hopefully this is a step in the right direction for me! My doctor has referred me to a neurologist as well. 

 

[CHfather]

It's stunning how cruelly ignorant doctors can be.  I wish I could say that your situation is even unusual, but it's more common than actually getting a prescription for oxygen.  How soon will you be seeing the neurologist?  You have a better chance of getting oxygen there, but it's far from guaranteed.  I would consider calling the neurologist's office and asking whether s/he prescribes O2 for cluster headaches.  There is an alternative that a whole lot of people with CH -- at least 20 percent -- turn to, for many reasons. That's using welding oxygen. It's something you can just go buy, and you can get all the other stuff you need (mask and regulator) from the internet.  My daughter has used welding O2 for ten years; Dallas Denny uses it, too.  If you want to go that route, let us know.  If your doctor will just write the %$#@@^ prescription, of course, you can get medical O2 on your own. I'm willing to bet that one reason your doctor lied to you is that she doesn't know how to write an O2 prescription for CH and was embarrassed to admit it.  Denny gave you the prescription wording.  Do you have walk-in medical clinics near you?  If you have anything in writing showing that you have CH, you can go to one of those clinics, tell them/show them that you have CH, and ask for an O2 prescription.  As with your neurologist, it's best to call first and ask whether they'll prescribe it.

Did the doctor prescribe anything?  

Please try the energy shot at the first sign of an attack.  It does help a lot of people. Many prefer it to be very cold.  Here are some other things to try to abort an attack.  Drink ice water through a straw so the water runs against the roof of your mouth. The idea here is to induce a kind of brain freeze that will sometimes counteract an attack.  Some people get relief from standing in a bathtub of very hot water, and some like to move from that bathtub to a cool room and then back to the tub.  Some people find that inhaling cold air from an air conditioner will relieve an attack.

I'm so sorry from your awful experience today.  But it's going to get better.

[Mel98]

The place I went to today is actually a clinic my hospital offers and is free through my mom's insurance. I spoke with a nurse practitioner who has spoken with my own doctor before about my CH. So no, I didn't speak with my actual doctor today, but as soon as I mentioned 02 to the NP, she shot it down saying my dr wouldn't sign for it. She said that the neurologist should call me within a week.

I annoyingly asked her what I can do for now for the pain, and she suggested Excedrin Migraine (which I have used in the past, but it gives me rebound headaches) as well as taking 5-10 mg of Melatonin every night. She wrote me no prescription today, not even Nortriptyline!! I was shocked about that, actually. 

This whole process has been so frustrating, and I just wish the medical professionals would actually understand. I'm wondering if once I meet with the Neurologist if I'll be given a CT/MRI, but I'm not sure if that would show anything. I will definitely try the energy shots and the ice water! What sucks most I think is when they wake me up out of a dead sleep. Those times are the worst. This past week has actually made me afraid to sleep, knowing what lies ahead of me at 2 AM. Hoping for the best with the melatonin tonight, though! 

Thank you so incredibly much for responding to me. It's truly given me some hope, and I definitely needed it. Wishing the best for you!

And me! lol 

 

[CHfather]

The melatonin might help (melatonin levels get low in people with CH when they're in their CH cycles).  It helps a few people here, but usually at much higher doses than 5-10mg, though that's roughly where you should start.  It isn't to help you sleep -- you're not going to sleep through an attack -- but to help prevent attacks or make them less bad.  I would consider trying the Benadryl and not the melatonin, but others might recommend the melatonin. It's not a good idea to use both at night.

Excedrin Migraine would really only help because of the caffeine in it.  There's very little indication that nortriptyline will help, either.  The meds typically prescribed for CH are verapamil as a preventive and a nasal or injectable triptan (such as sumatriptan) as an abortive.  I would say that most people here would tell you that the most effective preventive is the D3 regimen, and while the triptans do abort attacks quickly for most people, they also are considered to worsen subsequent attacks and perhaps extend cycles.  These prescriptions are just simple look-it-up-in-the-book-or-the-online-reference for any medical "professional" who cares.

Wake-up attacks are awful, and there are times when your attack is so far along that the "secondary" things like energy shots, etc. just can't make a huge difference.  I will say that most people, though not all, can actually go back to sleep after aborting an attack with caffeine.

I hope something helps you tonight, and that you get to see a competent medical professional soon. If you want to push back on the clinic doctor or the NP, we can give you the peer-reviewed medical studies (the main one being from the Journal of the American Medical Association) that prove the effectiveness of oxygen.  But again, all docs and medical professionals have books or online resources where they can quickly look up prescribing advice if they're not too lazy or uncaring to do so, and those all recommend O2.

A competent neurologist would probably order an MRI to rule out other causes. It won't show whether you have CH, though.

Edited July 7, 2018 by CHfather

[ClusterHeadSurvivor]

Welcome, pain free wishes Mel.

I would also encourage you to buy this book. It is the cluster bible ! 

click here www.ashleyhattle.com

Ashley is an author and cluster head as well as her fiance and she is one of us. This book is a wealth of knowledge and a must have for survivors and caregivers.

I would encourage your mom to read it aswell.

I do a vlog on YouTube about living in chronic pain positively.My channel is ClusterHeadSurvivor.

Listen to all the people here. They are a wealth of info. 

Pain Free Wishes Mel.

[FunTimes]

Mal

 

I also had issues with doctors and getting oxygen. I had more of a issue of getting a supplier of the O2 then I did with the doctors writing me a script. I have had places flat out tell me NO they dont supply to cluster headache people. I did get my prescription and started to call the top of the medical supply places in my area telling them I will pay for it out of pocket and finally landed with one. It took about 2 weeks and I found out that it is less money for you to pay out of pocket for the o2 for me then it is to use insurance and one less thing to deal with.    I do not care about the regulator and mask they o2 place sent me to use, the mask is way to small and lets air in and the regulator is at a lower flow rate. I order my o2 mask off of the clusterheadache site and the regulators off amazon. 

This site is a great place to be. Look around for a few hours and ask a tun of questions. use the search feature at the top and I am sure you will find information from someone who has tried it.   

[timpromo]

Hi Mel,

I've had Cluster headaches since 1993.  25 years now.  I've gone through the gamut of treatment as well as doctors.  From doctors who wouldn't prescribe anything to doctors who were willing to work with me.  I'm currently under the care of a neuro. who has me on the following preventative regamin: 900mg of Lithium, 240mg of Verapamil, 1000mg of Depakote, 300mg of Gabapentin at night (to help keep me in REM sleep).  I have a prescription for injectible imitrex to use when I get a headache.  I split these to make them last twice as long.  I also buy all of the imitrex that the prescription was written for instead of stopping when I am out of cycle.  I keep a mini stockpile in my closet.  This particular neuro is not an oxygen prescriber either and I while I feel like she's willing to provide me with any chemical I want, I may have a conversation with my primary or head up to the University of Virginia and visit with their Headache Clinic.  They advertise the merits of 02 right on their webpage.  It is amazing how ignorant doctors are.  Don't be afraid to confront your doctor - everyone on this board has had to do it.

Good luck!  It does get better!

Tim

[jon019]

Tim.....I will try to tread lightly since I do not know your medical history...don't even play a Doctor...and WASN'T asked....BUT 3 primary preventives...1 secondary and NO O2...screams to some of us that you are overprescribed and under oxygenated. With all those meds the side effects must be.....YIKES!

Oxygen literally saved my life (along with ch.com)...is cheap...easy to use... no side effects...quick.... clean...LIFE ALTERING. Of the meds mentioned, verapamil is the most common....with 480 mg/dy (divided doses, usually immediate release form) being the reported sweet spot for clusterheads....and some going up to and beyond 1000 mg (me in high cycle). The D3 regimen is highly successful for a number of family members...basically vitamin supplements and way safer than most script meds....YMMV. Now I'll shutty………….

Best

Jon

[CHfather]

tim',

Gotta say that I had the same reaction as jon', including the sense that you obviously have had to work hard and endure a lot to arrive at your current cocktail, so maybe it's the best there is for you.  But I hope you get another opinion. It's hard for me to imagine, for example, what that very small dose of verapamil is doing for you in the face of that large dose of lithium.  

Many people here have found that the vitamin D3 regimen is as effective, or more effective, than any pharma preventives.  Some take verap along with it.  And you might know about "busting" (the reason for the site's name), which involves using psychedelics (sometimes at levels where there are no "trip" effects) to treat and prevent CH.  Like jon', I'm just sayin . . . .

D3: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708    Info about "busting" is in the numbered files in the ClusterBuster Files section.