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Everything posted by muggle

  1. I also am going to chime in here - I am episodic (15 years now) and started my cycle on November 3rd, was getting up to 6 attacks a day. I began the Vitamin D3 therapy on the 27th and my headaches stopped on the 30th. Coincidence? Maybe. But I had tried everything - Gabapentin, Prednisone, Verapamil - none of them worked and they all produced terrible side effects. I am still experiencing slight shadows here and there, but haven't had a full blown attack since the 30th. I fully intend on continuing this regimen forever. It is helpful to get your lab work done before beginning this just to know where you are - my Vitamin D levels were at 35 which is considered "normal," but not if you suffer from CH. I didn't do the loading doses, just started at the maintenance dose. I may up the D3 to see if it completely wipes out the shadows, but so far they are very light and only pop up here and there, usually because of strong smells (perfumes, etc.) As far as your doctors go, don't do anything you're not comfortable with. You know what's best for you. I've told many doctors "no" to many different medications they've tried to push on me. If there's one thing I've learned through this, it's that most of them really don't know that much about this condition. This board has been far more helpful than any doctor I've ever seen. Good luck and I hope you get results soon!
  2. I too get very cold during most of my attacks - I'm also one of the weirdos that responds better to heat than ice during an attack. I wrap my whole head in a heating pad and that sometimes helps with the overall freezing feeling I get too!
  3. Thanks for all your help with the Oxygen stuff guys- I really appreciate it! I am still waiting to see exactly what all they will give me for this, but she did say she wants me to come to her office so she can show me how to use it properly, so I’m taking that as a good sign! I got all my labs done and got the okay from her to start the vitamin therapy, so I am just waiting on the rest of the vitamins to arrive because I couldn’t find all of them in stores, so I had to order some of them through Amazon. I do plan on trying the busting method again because a relative of mine was helpful in obtaining this medicine for me. I’m guessing that the vitamin therapy won’t interact with that at all, but if anyone found that it did, please let me know! I hope everyone has a pain-free and happy Thanksgiving!
  4. Hi all, Just wanted to give you guys an update. I went to the nurse practitioner today (her name is Dr. Sandra Lee by the way) and I brought the printouts for the Oxygen therapy and the vitamin D3 therapy. She was all for me trying the vitamin therapy (and apparently had used it for some of her migraine patients) so I am going in for lab work tomorrow to get my baseline results so we can get the dosage correct. She also said before I even mentioned it that I should be on Oxygen. I was like “YES! Finally!” Unfortunately, laws prevent nurse practitioners from prescribing it, which she admitted was stupid, but then told me she was going to talk with my primary doctor and plead my case to him. Well she called me a few hours later and said she convinced him to do it, so I finally am getting the Oxygen! I was so happy I started crying on the phone. So I’m hoping between the Oxygen and vitamin therapy that life will become much more mangeable! Never underestimate the importance of finding the right doctor. She is getting a thank you card for sure!
  5. Hi again all! I was able to get an appointment with the nurse practitioner whose daughter has CH for tomorrow, so I’m hoping she will be a better resource than my current primary doctor. I will let everyone know how that goes. I called to get into a neurologist that has CH experience, but of course I am looking at close to a month wait unless someone cancels in the meantime. As far as the melatonin goes, I started with 10 mg and just swallowed it 2 hours before I planned on going to bed. I woke up once in the middle of the night with that familiar ping, but it resolved itself within a few minutes and never progressed to a full on headache. I also skipped my usual 6 am headache this morning, so I guess so far it seems to be helping! CHfather - thanks for the insight on splitting up the sumatriptan injections - I would have thought cleaning it with alcohol was a good idea, good to know that’s not advised! They are crazy expensive so it would be nice to get a few more uses out of them!
  6. Jon - thanks for the advice on the neurologists! I checked that list and there is one neurologist in my area that specializes in this so I am going to call and try to get an appointment with him. I also got a recommendation from a friend about another nurse practitioner in my area who has a daughter with CH, so she may be a good resource too. I will for sure share the names of these doctors if they happen to help me. CHfather - Thanks for the heads up about the weight of the tanks. I'll have to get my husband to help me with that because they'll weigh half as much as me, so that might be impossible for me to move them on my own! I am going to look into doing the D3 regimen as well - I have seen multiple people mention this. I did try melatonin last night and had my first headache free night of sleep in over two weeks! Anyone else have good results with this? As far as splitting the sumatriptan injections goes, I have to muster up the courage to give myself a shot in the traditional way. This may be easier in the moment of an attack when I don't really care though! One concern of mine is reusing the same needle - has anyone had issues with infection from doing this? Again, thank you so much to everyone for your help! -Vanessa
  7. Thank you all for the quick responses and advice on what to say to obtain this - as I'm sure you all know, this in an incredibly frustrating thing to deal with when you have uninformed/lazy doctors. And I totally agree that my Dad and I need to find a new doctor. We have both brought him multiple print outs showing that Oxygen is the way to go with this and he doesn't really seem to care. I fully intend on finding a doctor that will listen to reason, because clearly he isn't going to. I'm very glad I found this site and you guys, I have learned more here in the last few days than years of scouring the Internet in the past. I'm sorry you all go through this too, but I'm so thankful for all of your insight. I will make some calls tomorrow and hopefully make some progress on this. -Vanessa
  8. Thanks so much for the advice! I will definitely look into this. I'm going to plead to my doctor one more time for the 02 script, but this seems like a good alternative in the event that he won't budge on this. Do these places question what you want the welding oxygen for? In other words, have you had to come up with a creative excuse for why you're buying this? I'm not a very good liar when put on the spot haha Thanks again! -Vanessa
  9. Hi all, I apologize if this topic has already been covered somewhere else on the board, I am new here and trying to soak up as much information and advice as possible. A little background info - I have suffered from episodic cluster headaches for 15 years now. I’ve been put on prednisone, gabapentin, and verapamil all with no success and varying degrees of crappy side effects. My current regimen is downing way too many energy drinks and taking sumatriptan shots/nasal spray to abort particularly bad headaches, but I often experience rebounds if I use this method too often. I am going to try melatonin tonight for the first time to see if that helps at all. The last cluster period I had was 4 years ago (I consider myself fortunate to have had that long of a remission period) but now I am fighting tooth and nail to find a doctor who will prescribe me oxygen. I aborted my last cycle after 6 weeks by using the dosing method - it took two tries but finally worked, but I am having issues obtaining that “medicine” right now. My primary doctor knows little to nothing about these, despite the fact that my father (a 25 year episodic sufferer) and I both have this condition and go to the same doctor for this. It’s incredibly frustrating. Any advice on how to obtain O2 from a doctor or otherwise would be greatly appreciated! -Vanessa
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