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kat_92

Finally a diagnosis and D3 update

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Greetings from Miami

i finally saw a primary care doctor yesterday (worked in the ER for 20 years) and he has been the only doctor who sat and listened to me and took good notes. He diagnosed me with atypical cluster headaches. Said they present like clusters without the autonomical signs (runny nose, tearing etc.) wow. I can’t believe someone finally with some intelligence. He told me they tend to get worse over time (yay). I explained the D3 regimen and he did bloodwork on the spot. Should have the results soon. He also prescribed a steroid to try and break the cycle. I guess I’ll go from there? Once I’m feeling better I’m sure I’ll be able to try and fight for oxygen. I’m interested in dosing during pain free periods. 

Unfortunately I feel like the D3 isn’t working for me. Tomorrow will be my last day taking the 50,000 daily with all other supplements. I wonder since my clusters aren’t “full blown” maybe that’s why the pain is the same. If I can describe the pain, it almost feels like a terrible attack wants to come out but something is holding it back...for now. My pain gets bad but no where near what I’ve read people go through. Just wanted to give an update and any other info is appreciated. How do I get my hands on oxygen for the future. 

 

Thanks 

kat 

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Did he give you Prednisone? I've been on it before because I have asthma but I went to the dr. back in 2015 and thats what he prescribed me along with 2 Imitrex self injection shots which I can NOT do. I don't see how people do this especially with diabetes and stuff. Funny story. I was able to get the first shot off because I didn't know what to expect as far as the pain and the sharpness of it. But it IMMEDIATELY took my headache away. When I went to do the second one, I couldn't bring myself to do it because I knew what to expect, lol. Never took the 2nd shot. 

But yeah it doesn't seem like you're having full blown headaches so the D3 might be working more than you think. It doesn't always take them away but lessens the impact and duration for some people. Until you're basically writhing around in pain, holding your head, praying for it go away, its not full blown I don't think. When I describe the pain to some people, the best way to describe it to me is like a brain freeze that lasts from 15 min to up to 3 hours(rarely do mine last 3 hours, usually 15-30 minutes.

How long have you been on the D3?

 

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kat' -- Glad you got a diagnosis. Hope the steroids help.  Unlike regular cluster headaches, atypical CH often has an underlying physiological basis, such as something going on with the pituitary gland. Have you had an MRI? (From a journal article: "Based on this review, I suggest that neuroimaging, preferably contrast-enhanced magnetic resonance imaging/magnetic resonance angiography should be undertaken in patients with atypical symptomatology" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3928394/)

2 hours ago, kat_92 said:

How do I get my hands on oxygen for the future.

Your doctor should prescribe it, particularly since you have the diagnosis and an apparently caring doctor (Yay!). It's listed in all the medical resources as the #1 abortive.  If you can't get a prescription or run into insurmountable hassles with insurance, welding oxygen is an option that many people use.

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Yes i am scheduled to get another MRI with this doctor. I’ve been on the D3 for like a week now. I did have like half a beer the other night and I was so mad at myself because I knew it would trigger something. Just hoped it wouldn’t 

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A week generally isn't enough for the D3 to be effective, or at least not fully effective.  Your blood test will tell you what your D level is.  It has to be pretty high for the D3 regimen to be most effective.

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Okay thanks for the info. I’m not sure what the word atypical means in the situation. I know it actually means “not typical” but does atypical in medical terms mean that it’s being brought on by something? The doc seemed very confident in his diagnosis. I’m getting the MRI next wed I guess we’ll find out then. Wishing everyone pain free days ahead. I’m kkow I’m ready for some :( 

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Atypical means that it doesn't have all the symptoms of the "typical" cluster headaches that most people have. What that article says is that atypical CH often comes from causes such as pituitary gland issues that are not the causes of "typical" CH. There is no identifiable cause of typical CH. 

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Refresh my memory, but weren’t you saying the headaches come and last the whole day with no breaks?  That sounds like a dead ringer to me for hemiacrania continua. Also mimic some CHs. Did the doc have a reason why the doc thought it was CH and not HC? It still may be worth trying the indomethacin. A small group of CH patients respond to it according to my old CH doc. 

Edited by Freud
Typo

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Nice remembering, Freud!  Looking back over these threads, I see that HC has been discussed.  Easy to forget key things when under the pressure of talking to a doctor.  A "required" aspect of a hemicrania diagnosis is the eye or nose symptoms that are also typical of CH, which kat' doesn't have, but your suggestion is very important to follow up.  Maybe it's "atypical" HC!

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Yea, a GP making a diagnosis of atypical CH when your HAs are all day puzzles me a little. Go armed with a print out of what HC is. Most neuros let alone GPs haven’t heard of most of the TACs. On another note did he prescribe oxygen?  CH usually responds to high flow O2 and HC does not...

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@CHfather I totally agree it’s easy to get side tracked or forget to ask or tell a doc something when you are finally getting answers when you’ve been suffering. 

I didn’t know it was mandatory for a Dx of HC. I only know a little bit about the non CH TACs.  We didn’t  even covered all the TACs in PA school or on my board reviews. Only CH was briefly mentioned and most of the time on HA was spent on migraines. 

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I’m seeing him on sept 24th again. I’ll mention the HC. I also did not mention the oxygen. I think he’s gonna see what the steroids do and go from there. It’s seeming I’m getting more answers from a GP than the neuro I have to be honest. He said he diagnosed quite a few cluster headaches over his years working in the emergency room. Today, for example, I woke up feeling just fine (as I usually do), I slept through the night. I have a headache as I’m typing this. Pain is about a level 3 and it is presenting on the right side temple of my head. It’s almost always on my left (99%) of the time. An ice pack directly on the spot usually does the trick. I want to get a script for indomecathin and see if that does the trick. At least then I’ll know what I’m dealing with. Thank you again for all the informative caring responses. 

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On 8/20/2019 at 12:43 PM, CHfather said:

BKP -- Maybe a triptan nasal spray will work for you.  Or would you feel better without the self-injector, if you were just injecting yourself with a syringe? That can be arranged.  

Hey CHfather, I think you may be right. Because the first shot did seem to break the cycle. I still had some headaches for a few days after that, but I stayed on the Vitamin D regimen and they were gone. I was headache free for the past 3 years until the last couple weeks, they finally came back. And I know part of my mistake is I stopped the regimen when the headaches stopped. And since I didn't get one for 3 years, I thought they were gone. I should have stayed on the regimen and this time I definitely will. Luckily now I also have a different job than I had before where I have a lot more freedom go just get up and go outside and deal with the pain in case one comes on while I'm at work. Man, Vitamin's are so expensive but its worth it to be pain free. But man, anywhere from 15-30 bucks for each bottle of pills/vitamins is killer.

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The D3-50 water soluble only require one a week per Batch. So definitely a bigger bang for your buck. I know they work faster and require less refilling. 

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The D3-50 water soluble only require one a week per Batch. So definitely a bigger bang for your buck. I know they work faster and require less refilling. 

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