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ClusterBusters

Kellylynne22

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Kellylynne22 last won the day on September 17 2016

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About Kellylynne22

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  1. Kellylynne22

    New to CH, 36 weeks pregnant

    Just wanted to update on this thread, I was on Decadron for five days which ended on Monday. It is now Friday and I have not had a single cluster headache. It appears I am the exception to what most people here believe, which is that steroids can't break a cycle. Of course I know it could come back at any time, but I wanted to update to give hope to any other new members who come here for advice and are told what I was - which is that it would not work. Well, it did work. As far as vitamin D levels are concerned, I had mine tested and as I suspected, being outside all summer and taking a prenatal vitamin has kept me at completely normal levels. I won't be frequenting this board again after this post, even if my clusters do come back, unfortunately I didn't find it very helpful here. But I wish all of you luck in dealing with this very painful condition.
  2. Kellylynne22

    New to CH, 36 weeks pregnant

    See, the thing is, I feel more comfortable trusting the advice on levels and what is deficient from my actual Doctor than the data you have from "a leading medical center". With actual sources I'd be more interested. What leading medical center? Where does this info come from? This website has a lot of very useful info but you guys often cite other users as supplying your info, which to me is just like any old person posting stuff they made up. I base my decisions on medical journals and actual data from my doctors. Not trying to be a jerk or anything, I do appreciate it. I just need real sources to take this stuff seriously.
  3. Kellylynne22

    New to CH, 36 weeks pregnant

    Thanks...what is Kudzu? I don't really feel comfortable taking red bull pregnant, but I do drink a can of Coke here and there for the regular migraines, I will try that with the CH and see if it makes a difference
  4. Kellylynne22

    New to CH, 36 weeks pregnant

    I had my D levels tested about 8 months ago. 10 and under is deficient and doctors generally look for 25 and up as a normal range. I was at 15 at the time, so I took supplements. The levels listed in your document are not safe for pregnancy, those levels are nearing toxicity. I'm sure they won't harm someone who isn't pregnant, but the potential is there - or they just have really expensive pee, because that's where all that extra goes. I really appreciate all the advice and I get the urge to turn to alternative medicines when nothing else works. That being said I will ask my dr to test my D levels again just in case something crazy has happened and I'm at some kind of dangerously low level - but again, I highly doubt it. I tend to gravitate towards science and medicine for things like this, and am very skeptical about vitamins which don't have a lot of hard science behind them. But in glad it works for some people. As far as oxygen, it is way, way too expensive for me to afford. I did read over the documents here about how to talk to your doctor about ordering it and the ways you might be able to get it cheaper- and I may go that route, but last week I was in the hospital getting a procedure done, while experiencing a cluster at the same time, and I was on oxygen for 30 mins and it did nothing for me. Anyway, thanks for your time. I will still keep these suggestions in the back of my mind. I am now having classic migraines and tension headaches in between the clusters during the day and am pretty miserable, so I'm still open to at least seeing what can be done if no improvements soon.
  5. Kellylynne22

    New to CH, 36 weeks pregnant

    Thanks I may have my dr test my d3, but I have been taking d3 and the added d3 that's in my prenatal, not to mention I've been in the sun daily all summer. I would be completely shocked if my clusters had anything at all to do with a D deficiency.
  6. Kellylynne22

    New to CH, 36 weeks pregnant

    My dr and I are both aware of oxygen. It is not an option with my insurance. After scrolling through pages and pages of posts before writing this, I am aware that for "most" people none of these drugs can stop a cycle but I was hoping to find that for some people they can...I guess what I'm most confused about as I am new to these, is why even bother with meds at all if you have true cluster headaches, they are going to keep coming back every single night no matter what? Maybe coming from a long long history of traditional 3-5 day migraines where if you break the cycle with meds they will leave, gives me a different perspective. These are indeed far more painful but they last 3 hrs out of a 24 hr day. What's the point in taking anything if it's just going to come back anyway? No mushrooms or LSD def not an option. I don't understand how triggers can play a part either woth true classic CH like this. For example I change what I eat every day, avoiding what they say are classic triggers, nothing has put a dent in getting these literally every single night for 12 nights at the same time. Not even a night off. That tells me nothing is triggering this specifically. It's not like classic migraines at all.
  7. Kellylynne22

    New to CH, 36 weeks pregnant

    Hello, I just joined. I am 36 weeks pregnant and have had "classic" migraines of most of my life. About 11-12 days ago I got my first cluster, and it's been every single night since then. These things make regular migraines look like "kid headaches". The pain is unbelievable. Always wakes me up from sleep, always occurs between 10 p.m. and 6 a.m. They peak within 15 minutes and are not usually fully gone for 2-3 hours, with the most painful part lasting around 30 mins. Everything about it fits the exact description of CH. including the location along the left side of my head, primarily behind the eye, around the jaw, temple etc. I have found one person on a pregnancy forum who had this develop around the same time in pregnancy as I have, and it went away when her baby was born. I hope to god that happens to me, but I'm very scared. Because I'm nearly full term, my Dr felt it was safe for me to try 4mg imitrex injections, of which i'm going to try for the first time tonight. (I've taken imitrex pills in the past for my "regular" migraines while not pregnant, and they always worked, but tonight will be my first time with the injections.) She also prescribed a 5 day course of steroids - dexamethasone - which does have some concerns in 1st trimester, but for this far along she feels it's completely safe. I'm of course very nervous, but going on 12 days in a row of a cluster headache every single night - well the pain, lack of sleep, and stress can't be good for the baby either. I have to give this a try. My question is, I know that generally both of these drugs have a history of being more of a "crutch" than a cure - but do either of them ever break the cycle? I really can't imagine going four more weeks like this. I am afraid with imitrex it will stop the cluster tonight, but since mine are daily - will I just get it again tomorrow? I'm not going to feel comfortable taking imitrex every single day, that's for sure. Same with the steroids - I know for most they don't, but does anyone ever report of steroids breaking a cycle?? I guess i'm just looking for some hope at this point. This is all coming from my OB - It's a very long wait to see a neurologist, and I need something to help me manage the pain and get my baby here safely sometime in the next four weeks. I will be seeing a neuro and getting an MRI whenever this super long wait to do so is up.
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