kat_92

Hey friends As a category 1 hurricane approaches Miami it has been storming cats and dogs the last few days. I’m attributing the change in weather to my more migraine like headaches. Kinda all over my head and my whole face feels pressure. Oddly enough these don’t make me panic. But, I’m writing because I switched over to the water soluble vitamin D tablets that Batch had updated in his research. They seem to be working much better than the gel capsules! I’d love to hear people’s long term success stories regarding the regimen as a preventative for clusters. How long did it extend your remission period, intensity of attack’s when they returned, etc. Happy hump day

https://www.ncbi.nlm.nih.gov/m/pubmed/15836591/ I have been so interested in the reasoning behind my lack of autonomical symptoms. Lack of autonomical symptoms are more present in females, chronic sufferers and suggests a “milder” form of CH. I am still on the D3 regimen. I’m finishing the 2 week loading dose Wednesday. I switched to the water soluble vitamins as per Batchs’ findings. Just finished the prednisone today and it didn’t do anything for my headaches. Just gave me crazy cravings and stomach pain. Hoping everyone is well as can be. Kat

Would it be safe to take verapamill and the d3 regimen at the same time? I have one week left of the loading dose and then I will be on the matinence dose. I don’t want to inquire about verapamill unless it’s safe to take both.

Hey all! Its my second day on the prednisone steroid prescribed by my doc. I’m asking anyone with experience taking the prednisone. Is it supposed to break the cycle completely until the next one? Or is it just supposed to give me a few pain free days? Seems to be helping I still have some mild pain behind my eye. Thanks

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.

He seemed open to my suggestions so I’ll mention that to him at our next visit. There was so much info I honestly forgot to mention it.

I wonder if that makes it easier to treat or more difficult? I’m praying for easier

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

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

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

Okay thank you! I just received the rest of the supplements in the mail. I unfortunately already have the oil based d3 so I will be using that. Can I take the loading dose of d3 with simply the multi vitamin as an appropriate amount of calcium? Or should I be taking pure calcium during the loading dose? Kat

Thank you guys for the information! I appreciate it so much.

I still don’t know much about the disease. Every time I bring it up to a neuro they brush it off. Is it genetic?

Yeah it’s always there from the moment I wake up. I’m making an appointment with a general practitioner to see if I can get the blood work going so I can start the regimen. I’ll work on finding a neurologist I’m hoping that the new GP can recommend someone for me

All MRI came back negative. I’ve had mild-moderate pain at all times of the day starting July 6. The pain worsens about 3 times a day. The pain is tolerable but painful. I put an ice pack directly on my eye ball to numb it. I sleep through the night. The pain starts at my temple and slowly moves toward the back of my eye. It’s a very dull piercing pain. I get a little bit of eye tearing. No stuffy nose or swelling. I don’t know what to do besides grab an ice pack. This happens maybe 3 times a day. It is never out of no where I can always feel the build up of an attack coming. Can I go to a general doctor to get these tests done or does it NEED to be a neurologist? I’m not exaggerating when I say that most of them that accept my insurance are terrible thank you kat

Hey all! im starting my second month of painful headaches. They are starting to feel more like clusters each time they occur. I don’t have the best insurance so I am stuck with my current doc at the moment. He is CONVINCED it is neuromuscular. Despite my telling him about the times it occurs during the day and my ocular pain. I am very interested in the vitamin d3 regimen. I read the entire study I saw that was posted by Batch. I just today purchased the correct vitamins for the regimen. My question is, is the regimen more of a preventative treatment, or will it abort the current cycle I am in? My birthday is coming up and I am very depressed about what’s going on. It’s most frustrated giving money to a doctor who does not know what I’m going through. Any and all help is appreciated. Anyone who has been on the regimen for a good amount of time? Thank you

They have not mentioned that. My pain sometimes moves to the right side of my head. From the moment I wake up I have a full nagging pain behind my eye and the back of my head. The pain is about a (3-4) all day long. During afternoon and evening it flares up. Never wakes me up at night. It was on the same side of my head a few years ago and lasted a few months with no relief. I’m sensing the same thing is happening now. I’m seeing a headache specialist tomorrow. I’m going to inquire about Hemicrania headaches and what you just mentioned. I asked about cluster headaches and they immediately said no. Barely let me finish what I was saying. I’m so frustrated. Thanks for the advice

I just looked into the Hemicrania headache you mentioned and it sounds just like what I am experiencing. It mentions that there is no remission at all with these headaches and I actually went over 2 years without any headaches at all. This and the fact that they have both come during the summer months led me to think I have clusters.

Thank you! I have had an MRI and everything is normal. I’m trying to rule out ch based on the fact that I do not have eye swelling or tearing. Is it possible that these headaches can start off mild and ramp up later in life? I am not in need of a serious abortive quite yet. They never reach past the pain of about a 3 or 4. That is why I’m confused. I am currently seeing a headache specialist. Appointment tomorrow. I hope to get better answers. Is the d3 regimen something I can do on my own? Which vitamins is it exactly? Thanks kat

Hey all. I’m new here. I just want to give a disclaimer that I have not officially been diagnosed with cluster headaches. My headaches started when I was 23. I am about to be 27. I have been to 4 neurologists and they either claim I have migraines or “neuromuscular headaches”. I do not fit any of those symptoms and have not responded to medications like Topamax and relpax (typical migraine meds). I am convinced I have cluster headaches but every doctor says no. My headaches never wake me up in the middle of the night. However, they persist all day long behind my left eye. They flare up at certain times of the day but the nagging pain is always there. I took a steroid for 5 days and it seemed to go away. Two days ago the pain started again behind my left eye after having one sip of red wine. I am very frustrated and losing hope. I do not have any autonomical symptoms that come along with this awful disorder. Just the constant same eye pain flare up. My first round of these pains lasted 3 months and out of no where I was able to continue with my life pain free for 2.5 years (drinking ect) im sorry for the long rant, but my frequent googling led me to this site. I am interested to know what you all think and whether or not you think this could be what I am dealing with. Any advice is appreciated kat