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I am a long time lurker, but finally decided to post.

My CH never goes away, but I get immediate relief from d3. Right now my PCP wants me to discontinue D3 because it is at the high end (148 ng/ml). So I skipped my dose and I can feel the dreaded jaw pain and the tightening at the back of my head. I broke down and took 8000IU this morning, but the pain is worsening and I usually don't get any relief until I take 20,000 IU per day.

The doctor also checked my calcium levels and it was normal.

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you want to talk to "Batch," the guy who knows this stuff inside-out.  check your PMs (top left of the page, where it says "you have X new messages.")  i'm sending you his email address.  if he doesn't reply quickly -- which he almost certainly will -- let us know.

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Hey sweetie....sorry you have to be here.  CH is a terrible thing to live with, but happy you had been finding some relief.  You are saying your PCP(?) is treating your CH? Not a neuro headache specialist? And do you have an oxygen tank? Have you tried any other types of meds, Imitrex, Verapamil etc? You also stated that your pain never stops..(SO sorry) , how long have you been hurting?  Please keep us informed.  There are so many on this site with a LOT more knowledge than I have who will be chiming in..just getting some more info...HUGS and pain free wishes for you! :)

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I have an oxygen tank, and I am scared to use it because it gives me wicked rebound headaches. Let me give you a little more background:

My CH started about 1.5 years ago, and I thought it was a sinus infection till my ENT doctor told me to see a neurologist. Before I could see the neurologist, I found out that I was pregnant. The neurologist refused to prescribe anything till the 2nd trimester and pretty much said that she can't guarantee that Verapamil or Sumatriptan will not harm the baby. My neurologist was convinced that my CH was pregnancy-related and that it would disappear after I gave birth. It was truly a dark point in my life where I considered having an abortion and also jumping off a tall building.

This is when I came acorss Batch's D3 regimen and I did a modified version of it. I took my prenatal vitamins and 20,000 IU D3 per day. I had my D3 levels tested throughout my pregnancy and it remained around 30 ng/ml. I gave birth to a healthy child 5 months ago. And let me tell you, my 18 hours of labor was a breeze compared to a CH attack, my obgyn was astonished that I declined pain killers a day after my c-section.

Now that I am 5 months postpartum, I decided to ease my D3 intake and got hit by an CH a week later. So I guess I am stuck with it forever  :-[

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So glad you're past that dark point now.

Would you mind telling us more about your oxygen setup?  Rebound headaches are very rare from O2. You want a non-rebreather mask and a flow rate of at least 15 lpm. For most people, if they stay on the O2 for a while after knocking out the present attack, it also tends to prevent subsequent ones.  O2 is such a good friend of so many with CH, it would be good if you could find a way to make it work for you.

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Yes, I have a tank with rebreather mask and a valve that goes up to 25 lpm. I usually stay at 20lpm for 10 mins before tapering off. It worked great when I first started using it, but since then it helps with immediate relief and the pain returns 30 mins - 1hr later and it is worse than the initial attack.

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Gosh, I'm sorry to read that. I've reached the limit of my puny O2 expertise. Maybe someone with more wisdom and experience will have a suggestion. I know that some people drink an energy shot or energy drink after they've aborted an attack with O2, and say that helps keep the next ones from coming on. (Many, or most, do the energy shot/drink at the beginning of using the oxygen, to speed up the abort, but, as I say, some do it at the end for preventive purposes.)

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Hi got-h,

Now that I am 5 months postpartum, I decided to ease my D3 intake and got hit by an CH a week later.

I'm hoping that after corresponding with Batch you'll be comfy with restoring the D3 intake back to the effective level you had it at, at which point I won't be surprised if the O2 effectiveness issues will be resolved too.

Batch certainly knows WAY more about D3 than 99.99999999999999999% (or more) of PCPs.

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Hi,

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

May I ask a few more questions?

You say your CH never goes away. Do you mean you experience the pain 24/7, or that you get hits every day? CH doesn't typically (although there are really no hard and fast rules) last more than 3 hours per attack. If you are feeling constant pain, and if it is more in the jaw than eye, I'd be tempted to inquire about Trigeminal Neuralgia.  But, I'm not an expert, just a thought.

Also, you say you get immediate relief from D3. I've never known it to be an abortive - awesome if it works for you in this way. When I was on it, it took about 3 days before it kicked in and started working.

As many on the board know, I was born with a man's body, but fixed that troubling issue about 7 years ago. 8 Years ago, when I was on high doses of oestrogen and an anti-androgen to shut down my testosterone is when the clusters started.

My neuro thinks that I was always pre-disposed to clusters, and tinkering with my hormones, which can alter the hypothalamus, triggered them.

My testosterone now runs a little on the low end, and I've heard several people say their testosterone is low, and I think there is a strong relationship with hormones and CH. So being connected to your pregnancy may not be far off.

One of the reasons I think the D3 regimen works so well is that Omega 3 boosts Testosterone (although not sure that has been scientifically proven, I have a lot of anecdotal evidence).

MG

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Moxie girl,

My pain hits everyday at 3pm and 3am. There was one episode where I was in near constant pain for 4 days straight. It has been 15 months from when the pain first appeared and my cycle does not seem to be breaking, so I am assuming that it is chronic.

My hormones were tinkered with before my first bout of CH too. My hormones were always whacky and I was misdiagnosed with PCOS for the longest time. The Endo then figured it was not my ovaries, but suspected my adrenal which also turned out to be untrue. He then realized that my prolactin levels were all over the place (sometimes low and sometimes high) and so put me on Dostinex which messed with my cycle and ended up getting pregnant.

I am on my way to see the neuro now, and I will ask her if she thinks that the dostinex could have triggered my CH as opposed to the pregnancy.

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I have no idea what prolactin might have to do with CH, but I remembered this study, in which prolactin was one of three things studied in relation to CH. http://www.docguide.com/hypothalamic-dopaminergic-stimulation-cluster-headache?tsid=5 Maybe it might have some relevance to your neuro.

There's also this information, from a thread that I also do not understand: >>cluster headache has been a documented SYMPTOM of prolactinoma<<   https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1392933260/1  Note that the poster is not right about bromocriptine being the same as BOL-148.

This "information" might all be useless. If so, I apologize for wasting your time.

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