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kat_92

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Everything posted by kat_92

  1. Hey all , I was wondering if anyone had an opinion on me adding a vitamin B complex with vitamin C into my D3 regimen. Does anyone know of vitamin B interfering with any of the other supplements we take on the regimen? I am also on 240 mg verapamil daily. My dermatologist recommended it for my skin but I don’t want to take it if anyone has had negative experiences with it. Thank you Kat
  2. Omg! Reading posts like this makes me SO HAPPY. I just started verapamil recently at a fairly low dose, my doc was open to raising the dose if needed. I’m almost certain your intense cycle was from over use of Imitrex. Some days I just feel so lost and frustrated. I love my life and I miss the life I had before these. I think it’s just so new for me still. Can’t wait to master my headaches! I hope you keep having success Kat
  3. @Phantom99 I’m wondering if you may have Hemicrania continua if you have been having steady pain all day and then it comes in waves. Now many times a day would you say it is intense?
  4. Hey @Phantom99 welcome to the forum. It sounds like what you’re describing as clusters. Migraines don’t usually disappear for a few years and come back out of no where. Unless you make some sort of drastic change, moving, completely new diet etc. it’s good that you have already recognized some patterns so you can act appropriately. The mild pain you are having after an attack is a shadow. I would go buy fresh ginger and grate it, throw it in a blender with some honey and Apple cider vinegar and take a shot every day! Ginger is good for shadows. I also have ginger capsules you can get at the grocery store (not as affective as fresh though), AND it’s good for you :). I would automatically find a new neurologist. Prescribing topamax when he even said what you have are clusters is not a good line of treatment. It’s not a good drug. I was on it for a long time and the side affects were brutal. They didn’t help my headaches either. I would put all of my energy into getting some oxygen. It may take a while, but if you are persistent you will get it! The D3 regimen is something you can start right away without a script. There is a link for it on here if you just search for d3. No script needed, and the vitamins can only help you over all. I would ask my doctor about verapamil instead of topamax. It’s a way better medication when it comes to treating clusters, and I can’t imagine the side effects long term are anything like with topamax. Hang in there kat
  5. @dehabel I wouldn’t say don’t bother with it. But it’s a harsh drug on the stomach long term. Unless you think you might have one of the other TACs and not clusters, it might not work for you
  6. Also, a few words of caution with the indomethacin. It is used to treat Hemicrania continua, it most likely won’t work for clusters. I was on it for a week just to see if it would help my headaches because I don’t officially have a Ch diagnosis. I think I do most likely have Ch at this point though. You MUST take it with food. An actual meal. Not just a snack. And drink a lot of water with it. Taking it like that, should only make you a bit nauseous. If you take it on an empty stomach you will feel DRUNK. it is awful. The headaches it gives me the next day aren’t worth the medication in my opinion.
  7. Glad you found a decent doc! I’ve been to 5 already lol. What new mg of verapamil are you on? And glad to hear about the O2. You’re gonna want a regulator that is minimum 15 lpm. Wtfarley is a good website to shop for regulators. You’re also going to want the cluster O2 mask. A link can be found for that on the website. More experienced members can answer set up questions if you have any. Happy for you! Kat
  8. @Hart1985 hey welcome im glad you found the site. You’ll find excellent info on here. Although you are familiar with the headaches, I always suggest keeping a headache diary. Especially if you’re gonna be starting the d3 regimen and Benadryl, this can help track them and see what is working for you. Shadows stink. I drink a ton of water. This seems to help a bit. I also have ginger capsules that I take every day. Some find relief with energy drinks like Red Bull, 5 hour energy, etc. they make me sick so I stick to the v8 +energy. Busting is a good option for many. I spent hours reading through everyone’s busting stories. It was very encouraging. Take a look around on the site. Everyone is very helpful kat
  9. Thank you all for the helpful responses. I think for now, I will stick with my regulator on its own. It’s something I’ll consider down the line though. Thanks!
  10. Hey everyone, for those of you that have an oxygen set up, and preferably have tried both a tank with and without a demand valve, can you educate me a bit? Does it make a difference in abort times, does it help save on oxygen in the tank, etc? I found a regulator that goes up to 25 lmp with a DISS fitting. The regulator I currently have goes up to 25 lmp as well. Now, I’m addition I need to actually purchase a demand valve? I found one on wtfarely for around $300. I know that’s the going price for these. Is it worth it? thanks! Kat
  11. Hey how many mg of verapamil are you on?
  12. My doctor was awesome. He used to work in an ER and said he had seen a few patients with clusters come in to the ER and he put them on O2 and they responded great. So he said “hey I’m gonna prescribe you an oxygen tank!”. Getting the tank was a production. Be prepared to get frustrated talking on the phone with people. Once you find a way to get the tank, the same guy will usually deliver it for you. My guy is great. He gave me an extra regulator while I was waiting for mine in the mail. He also gave me 4 masks while I was waiting for my special cluster O2 mask. Good luck
  13. @dehabel i think you are taking a medroldose pack? It’s a very low dose steroid just to be taken for the week to cut the headaches while other medications kick in, or sometimes doctors think it willl get rid of them completely (they won’t). What else are you doing besides the d3? I’m so happy you had a pain free night!!
  14. @mit12 sounds like it’s been a crazy few weeks! I also experience migraines. It’s a combination of the weather and heat down here in Florida. Some very strong ginger helps get rid of them. My mom thinks I’m crazy for saying I would rather have a migraine every day all day for the rest of my life than have anything near a cluster headache. Which do you find are harder to deal with for you?
  15. @dehabel a steroid taper you should see results in a day or two. It can take a little while for the d3 to start working in your system. Have you done the loading dose yet? As per the instructions of the regimen? I took a Benadryl at bed time last night because my allergies have been causing me headaches and tooth pain. I took half of one along with my melatonin. I woke up without a headache today. You seem to get hit during the night: what are you taking before you go to sleep? Maybe try melatonin and a Benadryl. Kat
  16. kat_92

    Allergies

    Hey everyone my allergies have been off the charts lately. It’s usually just when I wake up in the morning. My throat is itchy, my eye pain is bad and I have pain in my upper teeth. My eyes are itching so bad I feel like I could scratch them out. (The pressure is tighter on the side I get headaches). My neurologist said this can be seen with allergies because the maxillary sinuses are very large. I’ve never heard of that before so I was intrigued. Would Zyrtec work the same as Benadryl to take throughout the day? I am hesitant about Benadryl because I am a bartender and I only go to work in the evenings. I don’t want to get sleepy. Does non drowsy Benadryl work the same? I am hoping Batch will weigh in here. He seems to have all the answers regarding vitamins and Benadryl. Hugs Kat
  17. @dehabel I can only imagine the depressing feeling you are going through. Thinking they are over only for them to come back. The D3 really helps a lot of people. Some find complete relief with it. Keep us updated kat
  18. I second the oxygen. Also, give the vitamins about two or three weeks for full effect
  19. I second the oxygen. Also, give the vitamins about two or three weeks for full effect
  20. @Desperately Seeking Relief Welcome to the forum!
  21. hey Everyone! I hope you are all staying healthy with the recent spike we are seeing with corona virus cases. It feels like we might have a leg up with all the vitamins we take (or maybe I’m being naive and they won’t help combat covid), but it helps to think they do! Anywho; I am writing because I have been doing some research and I came across occipital neuralgia. I have seen information on this before but I always brushed it off. July makes one year with a headache every day! Yikes. Never a full blown attack. No eye redness, stuffed nostril, just constant pain. Some days the pain would subside completely and come back the next day. The pain is steadily behind my left eye, my scalp, back of my neck and back of my head. I did a week long indomethacin trial. There were 2 days of the week I was pain free. The sidebar effects were not worth continuing in my opinion. My neurologist said results should be immediate, but other sources I’ve read said results could take 2 weeks. Debating whether or not I should give it another shot? I am currently on 160 gym verapamil (a very low dose I am to understand). The reason I’m writing is because when I was in middle school I started getting these pains in the back of my head. Only lasted about 20 seconds. If I moved my head a certain way, out of no where, I would get this instant almost hot flash across the back of my head. I would lose my vision for a few seconds, and it was gone just like that. My doctors always brushed it off as a pinched nerve. Now with my headache experiences, I’m wondering if I should look at occipital neuralgia closer? Or, if as @spiny suggested I have chronic CH that just haven’t emerged as the hell that they are yet. All MRIs have come back normal by the way. I don’t know. I’m just grasping at straws these days. It’s getting tiresome. And it’s only been a year! Pain free days ahead Kat
  22. @dehabel It sounds like what you were prescribed is a medrol dose pack. I have been prescribed one three times last year, once when I got my wisdom teeth out and twice for headaches. I didn’t have any side effects any of the times I took it. They are dangerous LONG TERM. But for 5 days you should be fine. I would take it. Any relief is appreciated. For clusters I would talk to my neurologist about verapamil (a calcium channel blocker), a standard cluster preventative. Safe to take with the vitamin d regimen. It may take a few days maybe even up to a few weeks to see results from the regimen. Don’t give up.
  23. @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?
  24. 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
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