kat_92

@dehabel the steroids should hold you over until any preventatives kick in. That is the point of the steroids. Have you had a chance to speak to your doctor about an oxygen tank?

I got a script for oxygen from my primary care doctor to a medical supply company. Getting the script wasn’t so much the problem as it was finding a place that actually delivered. Also, getting insurance to cover it is a pain in the you know what. My doctor wrote the script for an O2 tank for cluster headaches. Insurance says they won’t cover it bc headaches aren’t life threatening. I pay $78 per tank out of pocket. I hope you find some relief soon

@michq hey welcome to the forum. You’ll find the most helpful advice and suggestions on this site. I would keep a headache diary. Everything you eat or drink, if you get a headache, at what time, how long, variations in pain. Cluster headaches tend to form a pattern, so if you start to see a pattern you might be able to confirm a diagnosis. I have had constant pain myself 95%) of the time behind my left eye. Every day since last July. There have BARELY been days I am without pain. The pain is tolerable, I can sleep through the night. It’s usually always during the day. But cluster headaches can change over time. Become worse, change times, time of year, etc. look into the d3 regimen. It’s something you don’t need a prescription for. You can get ahead. Kat

@dehabel what dosage of verapamil were you on? I am on 160 mg for the day (a very low dose), and have been having success. I haven’t had any side effects really other than some constipation it has brought my headaches down about 75% since I started taking it almost 3 weeks ago. I recommend trying to work out a dosae with your doctor to stay with it. Also combined with the d3 regimen, you might have some success! Hang in there

@dehabel i was on Topamax for 2-3 years. The first two weeks I was vomiting and having diarrhea. Unable to eat, I was so weak. Once I got past it, I stayed with the drug. It helped my headaches SOME. But not a wonder drug. I noticed over time my balance was affected and my ability to think of words quickly. So I stopped taking it. That freaked me out. I tapered off. DO not go off the drug cold turkey. Certain classes of drugs like Topamax (anti seizure drugs), blood pressure drugs, and anti depressants are a neurologists go to prescriptions for headaches. I would try it out, but don’t be on it long term. Whatever you do, do not let the doctor prescribe anti depressants for your headaches. They will mess you up long term. Maybe ask if you can try verapamil (a calcium channel blocker). Good luck Kat

@EyecePick I can second @MoxieGirl comment. You must eat it with a meal. Not just a granola bar or something but an actual meal. The first time on an empty stomach I took it and I was dizzy drunk feeling for hours. The worst side effect of this medication for me has been a pounding headache for hours the next day. It was so bad it made me want to give up on the medication. I say stick it out at least a week to give it a chance. Kat

@igdc Interesting question. I had a head cold a few months ago (pretty bad). I was completely congested and my throat was super sore. I didn’t have my normal kind of headache for those full 2 weeks. Just some pressure from the congestion. Crazy! kat

@igdc Interesting question. I had a head cold a few months ago (pretty bad). I was completely congested and my throat was super sore. I didn’t have my normal kind of headache for those full 2 weeks. Just some pressure from the congestion. Crazy! kat

@Siegfried so glad to hear. And it’s great you have an understanding neuro. I hope for continued success for you!

@Siegfried im glad you finally found some answers. Must be a relief. I am frustrated because I tried indomethacin for a very short time. Not enough time to see any results. It made me so sick and dizzy. Any other neuro I’ve seen has dismissed my suggestion to try it again and play with the dosage a bit. I think I could see some positive results with it. My history; shaddow like pain all day every day since last July. Has been improving with 50 mg of metoprolol. Last 2 days I’ve been having orbital pain (not sure if it is stress related). Sometimes the pain turns into a severe throbbing on the other side of my head behind my eye. Still going strong with metoprolol. It’s not giving me any side effects so I might as well keep at it. I hope you have continued positive results. Kat

Hey @Luis i had mine removed in October. I told my surgeon about my concerns with my headaches. He gave me a local anesthetic and a muscle relaxer. I was never put all the way under. It was great. It took 30 minutes and I wasn’t loopy at all when I came out. Best of luck Kat

I hope everyone is doing okay and continuing to stay healthy. I started taking 50 mg of Metoprolol about a month and a half ago. It is a blood pressure medication used to treat migraines. The latest neuro I saw is convinced I have chronic migraines. A quick summary: Dull all day pain started last July 6 2019. I have had the pain every day since then. Triggers include weather, alcohol, caffeine and STRESS (the biggest one). Been on the d3 regimen since August 2019 and it was not helping all that much with the headaches. It has helped with other things though. Since taking the metoprolol in March I have been pain free for weeks at a time. I will trigger a headache with too much caffeine that takes a few days to get back on track. What type of headache I have at this point is still a mystery but I guess the fact that I’m having some pain free days is awesome. Best days ahead Kat

@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