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Everything posted by kat_92

  1. kat_92

    Indomethacin and dizziness?

    @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
  2. kat_92

    Influenza and CH

    @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
  3. kat_92

    Influenza and CH

    @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
  4. @Siegfried so glad to hear. And it’s great you have an understanding neuro. I hope for continued success for you!
  5. @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
  6. kat_92

    Wisdom tooth removal

    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
  7. kat_92

    Some good news?

    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
  8. 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
  9. @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.
  10. @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.
  11. @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
  12. kat_92

    CH and Migraines

    @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
  13. kat_92

    Vitamin D3 regime

    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
  14. kat_92

    Vitamin D3 regime

    @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.
  15. kat_92

    Is this really cluster headache?

    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
  16. kat_92

    Ketogenic diet

    @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
  17. 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.
  18. kat_92

    Prescription Frustrations - long rant

    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
  19. kat_92

    Prescription Frustrations - long rant

    @spiny I have an M tank. They are all $78 no matter what size
  20. kat_92

    Prescription Frustrations - long rant

    @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
  21. kat_92

    Indomethacin is doing something

    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!
  22. kat_92

    Sumatriptan where has this been all my life

    @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
  23. kat_92

    Stomach pain while on d3 regimen

    @Luis have you also tried taking melatonin at night? I take 6 mg every night to help regulate my sleep pattern. I also doubled up on the fish oil, @Batch suggested it to help fight my depression
  24. Hey all I’m currently up with my O2 tank. They are non stop and worse than ever. It started at about 6pm and I have gone through waves of shadow pain and actual hits until now. I don’t know what to do. I don’t feel like the O2 is helping. I am having such panic attacks that I don’t think I’m breathing it in right. Can’t get a hold of the neuro around the holidays. I know the hospital won’t help anything. I tried upping my D3 the last 3 days as per Batch and it doesn’t seem to be helping. I guess I don’t really have any questions I just feel alone and you all are the only ones who understand. kat
  25. kat_92

    Stomach pain while on d3 regimen

    @CJW that’s awesome that you found success in MM! I’m going to start busting soon as well. I’ve been on the regimen for about 6 months now. At first I was having terrible stomach pains and diarrhea (sorry if that’s too much info) but @Batch advised me to up the magnesium to help combat that, split the vitamins up and must take with meals. Just some info if you wanted to give it a second try. It’s relitively cheap and easy to keep up with. Hope you continue remission! Kat