kat_92

@spiny thanks for the info! She said there is no way CH can be mild. She also said migraines cause one sided pain focusing around the eye. I don’t see the neuro for a follow up for another 3 months. To be honest, she is my 6th neurologist since I was 22. I am almost 28... it is getting infuriating and frustrating having to constantly re establish myself and give another history of my past medications. I don’t want to do it again. I guess I’m on my own. I have MM and my oxygen tank so there’s that.

@jon019 I tried to explain to the neuro that I do not respond to migraine medications and that chronic clusters tend to be like what I am describing. That or hemicrania continua. She said I don’t meet the criteria for either.

@Pebblesthecorgi thanks for the info. I am going to give it a shot to see if it helps. My neurologist is still unclear whether or not I have clusters or chronic migraine. I’ve had only mild to intense shaddow pain since July 6th every day. No tearing or nasal congestion. She said that is not distinct characteristics for clusters so she thinks it’s chronic migraines. Not sure what to believe anymore. I’m quite frustrated

hey All I was prescribed metroprolol today by my doctor (preventative for migraines and clusters), what are the rules regarding the interactions with the vitamin regimen? Thank you

@igdc hey! This is interesting. I had the same situation. There were days where I didn’t have any ch type pain behind my eye (usual) but I had a migraine so bad I couldn’t even move my head. I’m not sure if it was an actual migraine or just an all over headache from all the meds I was trying. kat

https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people found it! Sorry I’m at work at the moment someone else had posted in another thread. Please read carefully

@Cluster S welcome to the site I don’t have a direct link to the article but just to get you started Bio tech D3-50 once a week (you need to do a loading dose for a week or two. More explained in the article I’m sure someone will post soon) order these on amazon k2 advanced once a day fish oil 1200 mg (I take 2 per day) magnesium 500 mg once per day multi vitamin once per day (Kirkland brand sold on amazon if you don’t have a Costco membership. I got 800 for like $30) needs to be taken year round.

Hey @Lilly glad you found the forum. Joining was the best thing I’ve done so far. It’s good you kept such a detailed history up until this point. This will give a more accurate diagnosis. I was also diagnosed with “atypical cluster headaches”. I don’t get any of the eye swelling or nose running symptoms, and until this point I am actually able to function. I’ve onlu had shaddows since July 6th (still going on). I feel fine until the evening and then it’s steady shaddows until the next day. They morph over time, so I went ahead and got my oxygen tank right away for the emergency situations. I would get on the vitamin d regimen right away. Kat

@kirstired I’m sorry you don’t have significant results with O2. I don’t have access to the article but @Batch knows everything about the diet and d3 regimen. He continues to state that a Keto diet is essential to get maximum relief from the vitamin regime

I suffered from migraines in high school and college and I would trade to have those back in a heart beat. I only get them now when the weather is bad (stormy) I live in FL, so the summer time is bad for me.

It was a deposit of $150 and $78 for every new tank I get. They provided a regulator and a mask but I bought my own. The delivery is great. They will come the next day

@spiny I have an M tank. They are all $78 no matter what size

@signals61 hey! I too had similar frustrations with the oxygen. My doctor even warned me ahead of time that he would gladly write the script, but that doesn’t mean I would easily get the O2. When I called to get the oxygen they said I needed a blood test to confirm that I needed the O2 in order to live. When I explained it’s for cluster headaches she cut me off and told me they don’t cover oxygen for “headaches” because it’s not life threatening LOL. I told her it’s not life’s threatening but cluster headaches will make you wish you were dead. And I hung up on her. Long story short, I didn’t go through my insurance and I pay $78 per tank out of pocket. Kat

I attempted to take indomethacin for a few days but the side effects were so bad I didn’t even notice any change (good or bad) with the headaches. I was so dizzy (almost felt super drunk), throwing up constantly, it was so bad. But I’m thinking of asking my new neuro to prescribe it and come up with a different plan for me because I’d like to try it again. I’m glad it’s working for you!

@20yearslater welcome! This is my first time with Ch as well (started in July). I had very dull headaches for 3 months at a time and then they went away for 3 years! And then BAM. Back again. So I am thinking they are getting worse over time. I would start the d3 regimen! It’s a lot to type out but search for the info in the bar and you’ll find all the info you need. Many people have success with that. I have avoided sumatriptans because I’ve heard they can make cycles longer and more intense. That might be why your headaches are coming more frequently....or the cycle is just ramping up. It’s hard to say. Typically people with O2 use that as a first line of defense and the sumatriptans are used when O2 is not available ( in your case bring them to work!) I hope you find the forum helpful. I’ve gotten more help here than from most doctors I’ve seen (5 neurologists at this point...scary how ignorant they all were) good luck! Kat