Need help with headaches, read about clusterbusters

[Melissa30]

Hi, I am thirty years old,  and for the past 3 weeks have been suffering from terrible headaches up to 3 times a day, they are so bad I am unable to take care of my baby when one comes on, and all I can do is grab half my face in pain and cry. I have been to doctors twice and to the hospital for CT scan and blood work with all the results coming back fine. This is the first time (the past three weeks) that I have ever suffered from this type of headache and when I was researching it I read about cluster headaches which then eventually brought me here.

[fella1234]

Hi Melissa,

I'm sorry this is happening to you.

are your headaches spread out over your head?  Or are they concentrated in one area?  Where are they?

what does the pain feel like, specifically?  Does your nose run or your eye tear up on the side of the pain?

Do your headaches tend to happen at the same time of day?

We are not doctors and cannot diagnose you with cluster headaches; however, there are some tell-tale signs to look for, which is why I asked you those questions.

To get a diagnosis of cluster headaches, you will need to see a neurologist.  Preferably one with a headache specialty.  The ClusterBusters and ClusterHeadaches.com maintain a list of medical providers that are familiar with CH.

In the meantime, we have some techniques we use around here that may help you with the pain:

1) keep a large glass of ice water on you at all times with a straw and buy some 5 hour energy drinks.  When you feel a headache coming on, IMMEDIATELY, drink one 5 hour energy in one go, then suck the ice water into the back of your throat on the roof of your mouth on the same side as the headache.  This can sometimes abort a cluster headache attack (but it is not a guarantee).  Keep sucking on that water until the headache feeling passes.  If it comes back, keep sucking on it.  Watch your caffeine intake when using this method  

2) there is a tendon under your ear lobe on your neck.  Sometimes you can ease the pain by pressing on this tendon on the CH side hard (it will hurt), and holding the pressure for a slow count of 30.  

3) my go-to in a CH attack is to run an extremely hot shower.  I sit in the shower, in the dark, and run the piping hot water right on my face.  This sometimes eases the pain for 45 seconds at a time.  It's not a solution, but can help weather the storm.  For a long attack, it gets old though.  Some folks around here prefer ice.  

There are many other treatment options available:

if you have cluster headaches, the standard medical practice is to use:

1) Imitrex to abort acute attacks.

2) Verapamil long term to disrupt your cycle.

3) Steroids short-term to give your body a jolt and hopefully shake up the cycle.

A doctor can tell you more about them if you like.  

More than anything else, the use of oxygen to abort attacks is indicated by the medical literature.  You can find more information about oxygen in the ClusterBuster Files section of the forum.  While you are there, read up on the Vitamin D method as well.

Last, there is the ClusterBuster method, which involves taking certain psychedelic substances to stop a cluster headache cycle and prevent future ones.  There are many knowledgeable people around here who can answer your questions about that should you choose it.

finally, start keeping a diary of your headaches. What time are they?  How bad are they?  Where are they on your head?  How long did they last?  What made them feel better?  This is important to help you plan what to do about them.

again, I'm sorry this is happening to you, and I hope you find some relief soon.  People here will answer your questions and you have many treatment options available.  Stay positive !!!!

[CHfather]

Nothing to add to fella's great post, except two questions: How long do your attacks last; and are you able to sit or lay still during them, or do you feel agitated and have to move around (or rock back and forth)?  Mostly, I wanted you to know that there are many of us here ready to do our best to help you.

[Melissa30]

I get them first thing in the morning usually for only half an hour right after I wake up, I can feel it coming, then at around 9:30pm gthe night time ones are usually much more intense and last around 3 hours,) I sometimes get a third one a couple hours after I fall asleep at around 1 or 2 in the morning.                            The pain is only on the right side of my head, mostly behind my eye and in my forehead (right side only,) and radiates up from my neck. I can't explain the pain, my right eye waters during the worst part of it, and my right nostril gets clogged during the episode, then is clear after it passes. I try massaging my neck and hot showers and baths but nothing seems to help. Anyone who tries to help me I end up snapping on them, and then feeling terrible after but can't help it because I'm in so much pain.                              I can't lay dawn, I usually sit up and rock back and forth.  I feel so hopeless and worry about when then next one will come, my mom doesn't understand what I am going through and thinks I'm crazy when I tell her they are so bad I've had suicidal thoughts or want to stab myself in the head with a pin to help release the pressure or, I don't know. But when I'm in it I can't help these thoughts, I know it sounds stupid but it's the truth.         Thanks for listening, and responding.

[Melissa30]

I get them first thing in the morning usually for only half an hour right after I wake up, I can feel it coming, then at around 9:30pm gthe night time ones are usually much more intense and last around 3 hours,) I sometimes get a third one a couple hours after I fall asleep at around 1 or 2 in the morning.                            The pain is only on the right side of my head, mostly behind my eye and in my forehead (right side only,) and radiates up from my neck. I can't explain the pain, my right eye waters during the worst part of it, and my right nostril gets clogged during the episode, then is clear after it passes. I try massaging my neck and hot showers and baths but nothing seems to help. Anyone who tries to help me I end up snapping on them, and then feeling terrible after but can't help it because I'm in so much pain.                              I can't lay dawn, I usually sit up and rock back and forth.  I feel so hopeless and worry about when then next one will come, my mom doesn't understand what I am going through and thinks I'm crazy when I tell her they are so bad I've had suicidal thoughts or want to stab myself in the head with a pin to help release the pressure or, I don't know. But when I'm in it I can't help these thoughts, I know it sounds stupid but it's the truth.         Thanks for listening, and responding.    They are usually an hour of intense pain and then a dull pain, that stays until I fall asleep or sometimes all day just waiting for the next round to come. 

[Dallas Denny]

Welcome to the community Melissa....sorry you needed to join us!

Your last post does indeed sound like classic clusters I'm sad to say!

Your priorities should be getting a confirmed diagnosis.....with the diagnosis, if the doc is worth a crap, you should be able to get a script for high flow oxygen, and read up on the vitamin D3 regimen in the files.

Dallas Denny

[fella1234]

I agree with Denny; definitely sounds like clusters and definitely need to see a doctor with information about CH as soon as possible.  High flow oxygen will help you abort attacks and control your pain and then you can start worrying about what to do long term.

 

I understand how you feel with your mom.  I used to tell people I'd jab a syringe full of heroin in my eye if I thought it would help.

That brings up an important point: opiates do not help cluster headaches.  Many well-meaning doctors and people will offer them to you but I would advise you to turn them down.  They aren't worth a damn for a cluster attack and you could get addicted (also, constipated). I can't tell you how many doctors whipped out the script pad and asked me if I wanted narcotics for my pain. 

If your mom is someone you can rely on, tell her "mom, this is kicking my ass and I need your help. I need you to:

1) help me schedule a doctor's appointment, preferably with a neurologist or neurology PA

2) help me when I have an attack to do things I need doing (like watching the baby)

3) understand that I can't control when this happens"

And if your mom can't help, don't despair!  Everyone here will always respond and help you.  You can always improve your situation, and there are always things you can try.

 

[CHfather]

As fella' said in his first post, there are some things you can try right now to stop an attack or at least make it so it's not so bad.  Later (as soon as possible), a doctor can prescribe you some things that are will help more reliably, but for right now . . . 

1. Drink down an energy shot such as 5-Hour Energy at the first sign of an attack.  Don't wait -- just do it.  Many people prefer them very cold.  The ingredient in these that helps most is caffeine, but many people think the taurine and maybe the B vitamins also help.  If you don't have an energy shot handy, try a very strong cup or more of coffee. (For a large proportion of people, taking this caffeine during the night doesn't keep them awake.)

2. Drink ice water through a straw aimed at the roof of your mouth. A lot of it.  Your goal is to create "brain freeze."

3. Very hot water, however it helps you most.  Some people find that standing in a tub with your feet in very hot water helps them.  Some have said that alternating between the hot tub and some relatively cold room air helps.

In addition . . . 

Some people find that it helps to deeply breathe cold air, from an air conditioner if you're inside or outside if the air is cold where you are.  

Some people find that vigorous exercise helps.  Vigorous exercise outside in cold air can be beneficial for some.

Melatonin taken at night can help.  The body gets quite low in melatonin during cluster headache periods.  Many start with about 9mg and some work up well into the 20-plus mg range.

Some people find that their CH periods coincide with times of high pollen or other kinds of allergies.  One expert recommends taking 25mg of Benadryl every 4 hours, and 50mg at night.  If you do take this Benadryl dose at night, don't also take the melatonin.

Two people here have said that they got benefit for stopping or reducing an attack from combining the juice of one or two limes with a teaspoon of baking powder in water, preferably bottled water.  They both took this along with an energy shot.

As fella' and Denny also said, the vitamin D3 regimen described in the ClusterBuster Files section of the board can help a lot, although it probably won't help immediately.  See what you can do to get started with that.

There are a lot of videos on youtube of people having CH attacks. Maybe your mom would be willing to watch some to see what this condition can do to people.  All the things you are experiencing, from the willingness to harm yourself to make the pain go away, to the dread of when another attack will come, to the lack of understanding from people who should be more on your side, are things many people here have gone through.  It's a terrible condition to have, but you can manage it so it doesn't wreck your life. You are at the worst of it now, but it will get much better.  AND there are new medicines on the horizon with great promise. You have one very important thing going for you: You have what seems to be an accurate diagnosis. Most people go through years and years of misdiagnosis and mistreatment -- teeth pulled, sinus surgeries, medications that don't help, being told that there is something wrong with them mentally -- before they somehow get a correct CH diagnosis.  You are on what seems like the right path to get needed treatments pretty quickly. 

Do read the numbered files in the ClusterBuster Files section to understand about another option, "busting," that has helped many.

 

[Melissa30]

Thank you for your comments, its Comforting knowing  I'm not alone but sad that so many other people have to go through this.  It has literally taken over every aspect of my life, and I can't do a single thing without worry that another headache will come and take me over.                                                 I am scheduled to see my dr. again this Thursday (she believes I am suffering from migraines,) and am going to mention the possibility of Cluster Headaches to her, and hopefully she will refer me to the dr. In Toronto mentioned  in the list of doctors on this site.              

[CHfather]

It can be frustrating to try to get a CH diagnosis, as I've said.  Most doctors just aren't familiar with CH.  If your doctor insists on treating you for migraines, that isn't completely bad news.  Two standard treatments for migraine are also treatments for CH.  One is a preventive, verapamil.  It probably won't help you much in the beginning, unfortunately, because it has to be started at low levels and monitored for its effects on your heart.  But it might help.  An abortive often prescribed for migraine is sumatriptan (Imitrex/Imigram).  This also works to stop CH attacks.  BUT the most helpful kind for CH is injectable sumatriptan. That's what you want. At the very least, you want the sumatriptan nasal spray, which helps most people with CH.  Pills will probably not help you.  

I just don't know whether a steroid taper is a migraine prescription.  With CH, people often go on a steroid taper of about ten days or two weeks at the beginning of their treatment, at the same time as they start verapamil.  Usually the steroids eliminate or reduce the pain while they are being taken -- and that gives more time for the verapamil to take effect as a preventive.

Your doctor might typically prescribe other things for migraine. If you can, you should try to get those migraine meds I just mentioned prescribed if your doctor insists on a migraine diagnosis.

The bad thing about being treated for migraines instead of CH is that oxygen, which is a very effective abortive for CH attacks and has the added benefit of not having the side effects associated with the other medications I have mentioned, is not prescribed for migraine.  You should come as close as you can to begging for an oxygen (O2) prescription because it's the thing you want most.  Your doctor has probably never written a prescription for O2 for a "headache" condition.  I can tell you that the prescription should read something like this: "Oxygen therapy for cluster headache. 12-15 lpm for 15 minutes.  Non-rebreather mask."  (A doctor might use abbreviations for some of things.)  

 

[xxx]

Hey Melissa,

We know what you're gong through... and if it is cluster headache (CH)...  the good news is it doesn't need to be that way.  You're likely vitamin D3 and magnesium deficient and these deficiencies are contributing to the frequency, severity and duration of your headaches.

See your PCP for lab test of your serum 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is 30 to 100 ng/mL.  Data from the online survey of 215 CHers taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 indicate they had a mean baseline 25(OH)D serum concentration before start of regimen of 23 ng/mL.  As a CHer, we need our 25(OH)D serum concentration in a range between 80 and 120 ng/mL in order to remain CH pain free.

Download a copy of the anti-inflammatory regimen CH preventative treatment protocol from the following VitaminDWiki link and take a copy with you when you see your PCP for the 25(OH)D lab test.

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care and please keep us posted.  V/R, Batch

[Melissa30]

Like I previously said, my headaches have been happening for over 3 weeks now (every day, sometimes up to 3 times a day,) is there any way in knowing (or roughly guessing)  how long this cycle will continue for? Also, I am nursing my 7 month old baby, so am currently unable to take five hour energy shots and most likely a lot of the other medication previously mentioned, it is likely that I will have to stop nursing to get some relief from these headaches with the methods suggested?

[CHfather]

To the best of my recollection, we have only had one other nursing mother here.  She was permitted to use oxygen and verapamil.  She was probably already using oxygen, which would have made it easier than trying to get a new oxygen prescription from a doctor who already doesn't know very much.  I don't know what it was about verapamil that made it permissible to her doctor.

The Facebook group "Cluster headaches" has quite an active membership (it was founded by some folks from here).  You might be able to get some answers there about nursing mothers and meds.  It's a closed group, so you have to ask to be accepted, but usually that doesn't take very long.  Be sure you go to that group (there's a photo of three smiling people at the top of the page).  There are several CH-related groups at FB, and some are a little fishy.

 

[jon019]

Wow Melissa...we really are sorry you need to be here...but you sure found the right place. Been doing this dance for over 35 yrs and the series of replies you got were as BRILLIANT as I've ever seen...starting with an awesome post from "fella"...................MY OH MY! My salvation was a forum like this (talkin to folks who KNOW...and will not tell you it's all in your head (even tho ironically it IS....sorry ch humor)), OXYGEN OXYGEN OXYGEN, verapamil on occasion, energy drinks, Zomig nasal spray (5 mg) for the breakthroughs)...which probably are contraindicated for a nursing mother...but keep in mind for later.....much less weird side effects (for me) than imitrex, AND the D3 regimen which Batch has developed and is cheap, easy, no script required, beneficial to overall health, and highly successful for a number of folks.

Best

Jon

Edited January 7, 2018 by jon019

[Melissa30]

As I sit here, at the tail end of my second attack of the day, I can't help but to think about how I have taken for granted every single day of my life before these headaches so suddenly appeared. How the little things, that used to get me going, the "woe is me" moments that I would bestow upon myself, or the days I would think to myself, "my life is so hard," seem so insignificant I cant wrap my head around it now.     Although I have lived with these headaches for only a little over three weeks now, I feel that everything I see or do now seems to be in a different light, every second of my day that I don't have to go through the pain that I indure during these attacks to the right side of my brain, feel like a gift, like a blessing that I hadn't seen in the past, that I had been blind to for thirty years.   Just wanted to get that off my chest, knowing for certain, that everyone who suffers here would understand this....like nobody else around me can.   Thanks for listening. 

[xxx]

Melissa,

A CHer with active CH nursing a 7 month old baby... BINGO!!!  You really need to be taking 10,000 IU.day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors.  If not, your baby needs a minimum of 400 IU/day supplemental vitamin D3.

Yes... I can hear the wheels turning...  Who is Batch and what are is qualifications for saying this? 

Good question... Although my answer may not be sufficient for you to follow the suggestion as I'm a 73 year old retired US Navy fighter pilot with a degree in Chemistry, 24 years as a CHer (chronic since 2005) and full time student of vitamin D3 since October of 2010.  That's when I discovered that 10,000 IU/day vitamin D3 plus Omega-3 fish oil and all the vitamin D3 cofactors prevented my chronic CH... I've been CH pain free ever since.

This regimen is so important for good health and among other benefits, it builds a T-Rex immune system, that I have my entire family taking it and none of them have CH.  Of particular interest to you are my daughter and niece.  Both have been taking this regimen for years.  My daughter gave birth to her second child in July.  This baby and his sister, now 3 years, were both bathed in maternal vitamin D3 at a dose of 10,000 IU/day since conception.  Both pregnancies and deliveries were flawless.  Moreover their neuromotor, physical and learning development while breastfeeding at this maternal vitamin D3 dose are nothing short of phenomenal.  My niece took this same regimen through her pregnancy and is still taking it like my daughter while breastfeeding.

Orrin, 5 months and Fred, a.k.a., Winefred, 3 years...  Yes, I'm a doting old grandfather... but I've never seen more healthy babies...  and Fred speaks English and Hochdeutch...  I credit their excellent health and rapid development to their mother taking 10,000 IU/day through pregnancy and while breastfeeding...  Fred also takes vitamin D3 at a dose of 50 IU per pound of body weight a day...  She's a 40 pounder so that works out to a vitamin D3 dose of 2000 IU/day...  and not the 600 IU/day recommended by bureaucrats at the National Academy of Medicine, formerly called the Institute of Medicine (IOM).

Now to the experts with the sheepskins in the appropriate fields and years of professional experience with vitamin D3 studies who suggest 10,000 IU/day during pregnancy and while breastfeeding...

Bruce W. Hollis, PhD, Professor of Pediatrics, Biochemistry and Molecular Biology, and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC.

The Institute of Medicine has set the “upper limit” of recommended intake at 4000 IU. Is it safe for an adult to take 6400 IU?

"The IOM setting a limit of 4,000 IU per day was subjective and not based on any trials. The Endocrine Society guidelines state that 10,000 IU per day is safe. In my own experience with our trial and several other trials in which I have been involved (involving tens of thousands of patients), not a SINGLE adverse event has been observed due to vitamin D intake. I personally take 6,000 IU per day and have for years, and my daughter just had a child and is taking 10,000 IU per day while lactating (going on a year now). Totally safe." 

Hmmm...  How about that... A highly qualified PhD, Professor of Pediatrics, Biochemistry and Molecular Biology and Director of Pediatric Nutritional Science at The Medical University of South Carolina, Charleston, SC recommends a maternal vitamin D3 dose of 10,000 IU/day... and that's what his daughter has been taking while breastfeeding...  "Totally Safe."

See the following link for more details: 

https://kellymom.com/nutrition/vitamins/vitamin-d-and-breastfeeding/

This was an interesting study where one group of 74 breastfeeding mothers took the "Old School" recommended prenatal vitamins and minerals with 400 IU/day vitamin D3 during pregnancy and while breast feeding... After 7 months of breastfeeding their mean serum 25(OH)D was only 79 nmol/L (36.6 ng/mL).  25(OH)D lab tests of their babies indicated 78% of them were vitamin D3 deficient until provided with 400 mg/day supplemental vitamin D3. 

The other group of 78 breastfeeding mothers took the same prenatal vitamins and minerals with 400 IU/day vitamin D3 PLUS another 6,000 IU/day vitamin D3.  After 7 months of breastfeeding their mean serum 25(OH)D concentration was 151.2 nmol/L (60.5 ng/mL) and more importantly, their babies had a mean serum 25(OH)D concentration of 106.9 nmol/L (42.8 ng/mL) WITHOUT supplemental vitamin D3.

Grassrootshealth recommends a maternal vitamin D3 intake during breastfeeding of 6400 IU/day...  as a minimum... to ensure breast milk contains ≥ 400 IU/liter 25(OH)D.  See the following link for more details.

https://grassrootshealth.net/blog/vitamin-d-for-breastfeeding-mother/

Grassrootshealth.net also has a wonderful 25(OH)D home blood spot test kit for $70, no Rx needed and you'll get the results back in less than two weeks.  I've used their DIY 25(OH)D test kits for years.  See the following link for details.

https://grassrootshealth.net/project/daction/

So there you have it...  You can continue suffering from CH... or you can download the anti-inflammatory regimen, take a copy to your PCP, discuss it, then ask for the 25(OH)D lab test.  When the results of that lab test come back indicating you're vitamin D3 deficient, start this regimen and follow it carefully. I'd go one step further and take your baby to the pediatrician and ask for the same 25(OH)D lab test.  If you do this, your CH will become a thing of the past and your baby will be getting more than sufficient vitamin D3 while breastfeeding.

Over the last seven years, at least 4 ladies with CH started this regimen and continued it through pregnancy and while breast feeding...  Results...  No standard CH medications with all the side effects, no CH and 4 very healthy babies.

Take care and please keep us posted.  V/R, Batch

[NightOwl]

I'm reading @Batch's Vitamin D suggestions. 

Question: Is there a specific bioavailable D3 you recommend? And is this D3 or D3 and K? 

I have lengthly, chronic migraines (not CH). I found this board because a friend suggested researching microdosing psilocybin, and I am looking for connections between CH and migraines--and anything that's working for anyone.  

This D3 post made me reconsider my past D approach. In the past, I've tried both 5000mg and 10,000mg of D. And, I threw in (isolated and together) magnesium, some B's for good luck.  I eat clean, tried keto, the whole shebang. 

Then, I learned (genetic testing and reports) that I'm of the genetic type that doesn't absorb D/magnesium/choline well.  So, if D/magnesium aren't getting into my bloodstream well, then I'm not really trying them.  I'm going to try again, but if there's a "best" absorbable D (like I found with magnesium), I'd love any thoughts.  

And Melissa, this is an old thread,, so I hope you're cured.

 

[CHfather]

Batch is the man for D.  He is emphatic about his preference: >>The most significant change occurred in July of 2018 with the switch from the oil-based liquid softgel vitamin D3 formulations to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3.  Several of us found it faster acting with a higher bioequivalence in elevating serum 25(OH)D3 than the same dose of the oil-based liquid softgel vitamin D3 formulations. <<  More here: https://clusterbusters.org/forums/topic/6807-new-to-this-forum-–-cast-iron-until-hit-by-ch/?tab=comments#comment-67520

[xxx]

Hey NightOwl,

CHfather is spot on with his info.  I just sent you a PM with enough of the other info on this regimen to get you started.  Please shoot me a PM response when you read my PM to you.

Take care and please keep us posted.

V/R, Batch

Edited February 29, 2020 by Batch