Trying to understand my experience

[CSA]

Hi all.  I’m new here and trying to understand what I believe has been cluster headaches. A few years ago I had an "attack" with severe and sudden onset right sided orbital pain, like I was being stabbed. heat, cold, pressure, sumatriptan, and benadryl were all ineffective. I had no nausea, wasn't sensitive to light/sound, and I couldn't sit still. I considered calling an ambulance but then it just faded and disappeared after about 2 hours. It happened in the evening. I did some research and convinced myself it was a cluster headache and saw that the first line treatment was oxygen. I didn't do enough reading to see that oxygen is often denied to CH sufferers. Fast forward to a week ago, I was laying in bed, had taken benadryl for post nasal drip from a cold when it struck me again. Exact same symptoms. I took sumatriptan which did nothing, so I decided I just needed to go to the ER for oxygen. Well I'm sure you all can guess what happened there. I got a CT scan, was given fioricet, and denied oxygen (for the most part- I'll get to that in a bit.) The PA told me he's "been doing this for 21 years and never heard of that." I asked them to look it up. He refused. They tried to give me a bunch of other medications that I refused (SQ sumatriptan was not one of them.) The PA said my CT was normal except some sinusitis. I told him I had a cold and he said that's what my headache was from. I told him he was wrong and I knew what a headache from sinusitis was like. I told him I wasn't exaggerating the pain- that I had given birth without any interventions and this pain was a million times worse. He finally said he'd give me oxygen but when they went to set me up on 2L per minute via nasal canula I explained that the recommended therapy was at least 6 via a non rebreather mask. He refused starting that he didn't have the authority to give that because I wasn't having any respiratory issues. I settled on the 2L via NC and started purposefully hyperventilating the O2. To my amazement my headache just switched off after about 10 minutes. He came back after 15 minutes and I told him it worked. His response? "Or it was the fioricet." By that point it had been two hours since they gave me the fioricet.

Anyway... This leaves me with a few questions.

Are there actually restrictions on ER staff for when they prescribe high flow oxygen? I have a respiratory therapist turned PA friend as well as a pulmonologist friend that told me the oxygen therapy is harmless and they should've given it to me but they didn't say whether there could be legitimate reasons why they wouldn't be allowed to give it to me. The PA's attitude and tone tell me it had nothing to do with policy and everything to do with his ego.

I don't seem to get these headaches in clusters. They seem to be one-off events. Is this how they start? Does anyone else experience them like this? I get plenty of other headaches in clusters but not these  symptoms. My mind went to a very dark place in the middle of this last attack. If there's a good chance they are going to increase in frequency, I want to know so I know how hard to push for oxygen. It'll also probably be the impetus for me to finally treat my already existing but mild anxiety/depression.

If they are only going to hit me once every couple of years, I don't know that it makes sense for me to keep oxygen on hand. Does anyone have experience having a headache specialist write something up that you present to an ER with justifying the use of high flow oxygen?

 

 

[Pebblesthecorgi]

In reality there is not much an ER can do for a cluster attack except get in the way of proper treatment.  You had a typical experience and the ego of the PA likely got in the way.  PA's generally practice under a physicians supervision and they may have protocols that require them to contact a physician if they have to escalate care (for instance use high flow oxygen) because the attending doc may want to be aware someone needs increasingly aggressive care (like heart failure or non responding asthma).  The PA probably didnt want to bother the doc and get yelled at.  Either that or they are just a jerk.   Clusters can be occasional and or one off's.  Only the frequently hit or chronics tend to hang around here.  I have not had an attack in over a year and never get more than 100 yards from my O2 tanks (home, office, car, parents all have tanks and regulator)

[jon019]

hi csa...welcome,

...what is your diagnosis? who prescribed the sumatriptan...if oral, it's pretty useless as an abortive, inject or nasal far superior....sounds like you need a headache specialist, or a different one (and not just ANY neuro)....

...ER is basically worthless for CH...they rarely see and don't know how to treat anyway....your hit will end, they will proclaim success and send you on your way with useless shit like fioricet....they may or may not respond to a carried letter, I sure wouldn't count on it...tho carrying a letter might be beneficial if you are ever incapacitated by a hit...

....my idea of beauty is an O2 tank with layers of dust...the peace of mind of availability is priceless (what would you pay to stop something a million times worse than child birth?).... and you already know it works...

....somewhat typical to get worse over time from initial onset...but that is NOT a given...

.....CH is only going to increase your anxiety/depression...but also could be unrelated...get that treated regardless of headache diagnosis..

best

jonathan

[CSA]

Thank you both for the advice and for giving me a bit of perspective. I do not have a diagnosis. The oral sumatriptan was prescribed by a headache specialist just after my first cluster headache because of 'atypical migraines.' I was having daily headaches at the time. I did a trial of Topamax that didn't help and then an antidepressant that did for a month but then caused really bad insomnia which then triggered the headaches to start again. I moved out of state at that point and never followed up with another neuro because the headaches were manageable. The neuro never had anything to say about that first cluster headache.

I realize I have it relatively mild compared to most. That's not lost on me but you are absolutely right that the peace of mind would be priceless. I live nearby a university headache center that includes psych providers in house so I'll try getting in there. This may sound dumb but I didn’t realize you could just have oxygen sitting around for years. 

[Pebblesthecorgi]

Having a diagnosis is very important because it excludes other conditions (Tumors, anatomic variations and treatable causes) and saves you from wasting time with treatments that have been proven not to work (oral imitrex, botox, surgery, most medications).  You can also concentrate your self education efforts with a laser focus.  Do not expect the medical establishment to take charge and treat you.  You must direct your own treatment within boundaries you set.  Cluster headaches are a diagnosis of exclusion which means after ruling out other potential causes all you are left with is cluster headaches.  The criteria are pretty straight forward but overlap some other conditions.  Many headache conditions respond to imitrex, very few respond to O2 therapy used properly.  i am going to try and attach an article from "Up to Date" which is an online "go to" reference for many physicians and mid level providers.  It is a peer reviewed, frequently updated, referenced resource designed to help experts and non experts stay abreast of treatment guidelines for many conditions.  The attachment are treatment guidelines for cluster headaches and you might consider printing it off and bringing it to a provider or ER visit as you seek a partner to manage cluster headaches.  The attachment is a bit large and may not be allowed to be updated.  Maybe an administrator can help if it doesn't upload.  You can PM me if you want and I'll email it if you wish.  @CSA  get a diagnosis.

uptodateguidlines.pdf

[CSA]

Thank you Pebbles. My PA friend had sent me a screen shot of the Up to Date guidelines but it's very helpful to have the full pdf.

[xxx]

Hey CSA,

We're not doctors so don't diagnose, treat or prescribe.  That said, from our collective experience, we know what you've apparently been going through. What we can do is provide you with information you can take to your PA friend and his PCP/GP, your headache specialist and neurologist should you get a referral.

From my experience providing information to hundreds of CHers over the last 8 years on the benefits of vitamin D3 and its cofactors in preventing CH, you're likely vitamin D3 deficient.  That deficiency is contributing to the frequency (albeit low at this point), severity and duration of your headaches.

A suggested course of action for you is to see your PA friend and his PCP/GP for a lab test of your serum 25-Hydroxy Vitamin D3, a.k.a., 25(OH)D3.  25(OH)D3 is the serum level metabolite of vitamin D3 that's used to measure its status.  The normal reference range for the 25(OH)D3 lab test is 30 to 100 ng/mL.  As you're experiencing headaches that appear to be CH and you've had a CT with no abnormalities, if your 25(OH)D3 lab results come back ≤ 30 ng/mL, download a copy of the anti-inflammatory regimen CH preventative treatment protocol at the following link and discuss it with your PA friend and PCP/GP.

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

There's some good medical evidence behind this suggestion.  I've been running an online survey of CHers taking the anti-inflammatory regimen to prevent their CH since 16 December, 2011.  As of June of this year, 313 CHers have taken this survey.  Better than 80% of these CHers experienced a significant reduction in the frequency of their CH in the first 30 days after starting this regimen.  50% of these CHers experienced a lasting cessation of CH symptoms in the first 30 days.

The following normal distribution curve illustrates their 25(OH)D3 serum concentrations measured before they started the above treatment protocol while in active CH bouts experiencing an average of 3 CH/day/24 hours.

I'd also like to point out that this regimen is very safe.  It's so safe, I've had my entire family and close friends taking it since 2011 and none of them have CH.  That also includes three grand babies who were bathed in maternal vitamin D3 from conception through breast feeding as their mothers, my daughter and niece, took 10,000 IU/day vitamin D3 plus the vitamin D3 cofactors throughout their pregnancies and while breast feeding.  Their pregnancies and deliveries were flawless.  These three grand babies are very healthy with phenomenal rates of physical and mental development.  When they were done breastfeeding they've taken vitamin D3 at 50 IU per pound of body weight per day.  They have T-Rex immune systems so never get sick.

My grand daughter Fred, a.k.a., Winefred, is a vitamin D3 poster child.

Fred was speaking Hochdeutsch at age 2 and attended pre-kindergarten in Heidelberg, Germany last year at age 4 where only German was spoken.  Little brother Orrin, is 2 and also bi-lingual.

Take care and please keep us posted.

V/R, Batch

[CSA]

Thanks Batch! Your granddaughter is beautiful! 

I was vitamin D deficient during pregnancy so my midwives put me on 10,000 iu per day for the first month, then scaled back to 5,000 after that. Now that I'm thinking of the timing, my first cluster headache would've been around the time I stopped taking it. My daughter was around 2 and was not nursing very often at that point. 

Unfortunately, my PA friend lives in another state and I never searched for a new PCP after moving so I'm on the hunt now. I will be sure to push for the serum testing and a headache specialist referral. 

[kat_92]

@Batch your granddaughter is beautiful!! 

@CSA I’m sorry to hear about your frustrations with the ER. I’ve has my fair share of useless visits to the ER but when you’re desperate you feel like you don’t have much of a choice. I too was given fioricet. One time they gave my Vicodin AND dilauted (not sure how you spell it). And discharged me when I was on both those drugs. My mother was LIVID. This was about 6 years ago. My headaches went away for almost 3 years actually! And then they came back. Luckily I learned from my mistakes.  Never set foot in an ER once during this cycle. Thanks to the awesome people on this forum I found the best info. The D3 regimen I believe has been extremely effective in managing the headaches. Also I was able to obtain an oxygen tank. My good family friends own a clinic and have one of the best primary care docs. He diagnosed me right away. He had seen it in the emergency room a few times. Prescribed me a tank!:) of course  insurance didn’t cover it because why would they!? Yay insurance in America. I pay out of pocket $78 a tank. Make sure to have the proper mask and at least 12 lpm. This works for me most of the time. 

 

Take care! 

Kat 

[xxx]

Hey CSA,

Thanks for the reply.  While you're looking for a new PCP/GP, I'd restart vitamin D3 therapy.  The following photo illustrates the brands and daily doses my wife, the rest of our family and I have been taking for many years.  This is also what I suggested in the posted version of this protocol since 2011.  It will also be in the updated version of this protocol I hope to have ready for prime time and downloads from VitaminDWiki.com in December.

You'll find the "How To" instructions at the following link.  Take a copy to your new PCP/GP when you find one.

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

The Bio-Tech D3-50 is a recent addition to the anti-inflammatory regimen since July. of 2018.  It's a 50,000 IU water soluble form of vitamin D3 that I've found to be faster acting with a higher bioequivalence in elevating serum 25(OH)D3 at the same dose as the oil-based liquid softgel vitamin D3 formulations.  It's also more convenient and least expensive.   You take one D3-50/day while loading and when the loading schedule is complete, you drop back to an initial maintenance dose of one D3-50/week.  At 23 cents per capsule, that works out to a little over 3 cents a day for a an average of 7000 IU/day vitamin D3.  The daily cost of the least expensive liquid softgel vitamin D3 is 12 cents/day for 10,000 IU. 

Most CHers taking the Bio-Tech D3-50 have found the 12-Day loading schedule taking one D3-50 capsule a day for 12 days is sufficient to elevate serum 25(OH)D3 to a therapeutic range that prevents CH.  When the loading schedule is complete, one D3-50 a week should be sufficient to maintain the therapeutic 25(OH)D3 serum concentration.

In short, I'd get back on that horse and send the CH beast running by restarting this regimen now.  When you find a willing PCP/GP, the next set of labs for 25(OH)D3, calcium and PTH should confirm a therapeutic 25(OH)D3 range (80 to 100 ng/mL) with normal calcium and PTH in the lower third of its normal reference range.

Don't forget to get your daughter on vitamin D3 at 50 IU per pound of body weight/day along with calcium chews.  At 2 to 3 years the average weight is around 30 lbs so that works out to 1500 IU/day vitamin D3 or 10,000 IU/week.  I'd pick up some Bio-Tech D3Plus.  This is an ideal vitamin D3 formulation for kids as it contains the essential vitamin D3 cofactors all in one capsule.  It just needs calcium and phosphorus, the two primary building blocks needed to build strong growing bones.

https://www.amazon.com/D3Plus-Vegetable-Capsules-Bio-Tech-Pharmacal/dp/B0085F3K2C/ref=sr_1_10?keywords=Bio-Tech+D3&qid=1574813439&s=hpc&sr=1-10

The dose for a 2 to 3 year old with the D3Plus is one capsule every other day (48 hours) for an average of 1250 IU/day vitamin D3.  The calcium gummy my grand kids take comes from Vitafusion.  It's formulated with tricalcium phosphate.

https://www.amazon.com/Vitafusion-Calcium-Gummy-Vitamins-100ct/dp/B003DRD3PG/ref=sr_1_4?keywords=Calcium+Gummies&qid=1574851736&s=hpc&sr=1-4

One of these a day is great for 2 and 3 year olds.

Take care and please keep us posted.

V/R, Batch

Edited November 27, 2019 by Batch

[CSA]

Thanks Kat, for the advice and sharing your story with me. I was given dilauded one time for something else and thought I was having a stroke! I couldn’t hold my head up or put thoughts together into a coherent sentence. I can’t believe you were discharged on that!

 Thanks for the extra info Batch! I’m going to place an order right now.