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Thread: Lupus migraine

  1. #11
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    Default Phenergan instead

    Many people are allergic to the '-zines'; try asking for Phenergan instead, and be sure to list compazine as a drug to which you are allergic.

    Imitrex nearly killed me, and the side-effects of Inderol were unbearable. Ergotamines are a nightmare. For me, Toradol has been a miracle drug. It works for my daughter, too. Perhaps you'd have been ok without the compazine sending you into a tailspin. If you get a shot of Toradol, you usually don't need an anti-emetic unless you're already vomiting. If you get that bad again, you might try it with Pheregan instead.

    Have you tried Benadryl? It's also a bit of a wonder drug for headaches. In the ER I always ask for IV fluids--that alone relieves the pain significantly. I visualize it bathing my brain in cool water, and that helps, too.

    An ER doc I knew well had an almost fool-proof treatment for migraine/inflammatory headaches. She started a line for fluids, then added, one at a time, Benedryl, Toradol, and Phenergan. The headache just floated away and I slept the peaceful sleep of the non-narcotically drugged. Also don't be afraid to try asking for 10mg Morphine if nothing else has worked. DON'T take Demerol. It shrinks the pain to the size of a needle and burns through your skull. Lots of people have demonized Morphine, but it's a very effective and 100% natural substance that only makes the pain fade and some drowsiness occur. It's actually hard to get addicted, not easy, so don't believe the anti-drug organizations. You're sick, and it's ok to be treated appropriately. There are many studies and pain sites that will verify this for you, if you're afraid of it. But at this point, what have you got to lose?

    Those lesions are consistent with Sjogren's Syndrome, too. I have them in my Urinary Tract. Don't know about my brain, but I do get extraordinaringly severe inflammatory headaches, where I can't even open my eyes. I've taken every drug they offer, and only Toradol works, sometimes with Benadryl, sometimes, when very bad, with Morphine. If you have neck/shoulder muscle tightness, try to get someone to loosen that up for you, too.

    Good luck, and I'm so sorry I can't get to you in person. I can get rid of any headache in anyone via no-drug methods, but I need you in person. I'm a Shamanic healer, and I really could take it away for you. It's so frustrating to not be able to help!!! I have done some work over the phone, but usually I've seen the person first. Are you anywhere near the Bay Area of California?? If so, email me.
    Make life into art.

  2. #12
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    Wow, this has been a lot of great information. For me, most of the time I respond to the triptans, my best are Frova (long lasting, but takes time to work), Maxalt (quick acting, not long lasting), Zomig (quick acting, not long lasting), and Imitrex (that one does make me feel a little nauseated).

    I have not had a brain scan before so I don't know if I have any lesions. However, I have had these my whole life. It does seem a good number are food or hormone-related and I had a horrible one a year ago that lasted 13 days after I tried an herbal cleanse - even went to a walk in clinic and got a shot of Stadol and phenegran which put me out like a rock for 8 hours, but when I woke up the migraine was still there.

    Interestingly, what finally seemed to halt in me was when I was poking around the health food store supplement section for the third time during the course of this migraine, and I ran into the section manager who took me into his office area, we talked about it, he felt my hands and feet, and finally did some energy work on my head. He said he could take it away right there in the shop but that I'd pass out, so he was just going to aleviate it. Then he told me to go home and drink some long-fermented miso broth, put an ice pack on my head, and take some ibuprofin. I had done all but the miso broth (which later I found out I was allergic to) before in the course of this migraine, but within 30 mins of my getting home and doing this, the migraine finally went away. I honestly don't know what happened - it was a very unusual experience.

    You guys may be interested in a book I just read, called "All In My Head" by Paula Kamen - she's had a migraine/headache for 14 years and has tried nearly everything under the sun to try and figure out what's going on. Oddly enough, I don't think she visited a rheumatologist, or she didn't mention that. In the end she basically learns to live with it, so maybe it's not the most hopeful book in the world but I found I really identified with her stories; some of the stuff that happened to her has happened to me and I thought, wow, ok, I'm not the only one...
    Stephanie

  3. #13
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    Default More of us Healers than you'd think...

    There are a lot of us out here who can heal. I am hardly unusual, but I don't make people pass out! I can usually see the headache instantly, and once the first thing I said to a moving-in new tenant was, "How long have you had that horrible headache?" severly startling her. However, my accuracy (I don't usually just blurt like that--it's sort of against the rules--convinced her that even though she didn't yet know my name, I might be able to help, and so we went upstairs to her apt. full of boxes and I took the headache away. She'd had it for @ week, as she'd driven across the country. I did lots of healing work with her for years, and we became very close. I wish I could do it via the Net, but so far, no luck! Look for alternative healers in your areas. Also, accupuncture is very effective, and no, the needles don't hurt.

    Oh--to be clear, we're not talking "faith" healing, but rather energetic maniuplation that takes a long time of training to do, and first one must be an adept (a fancy way of saying having a natural inclination to be able to work beyond the limitations of the "real" world). It's a deeply spiritual path, but one mostly Native Americans and other deeply Earth-connected people do; for us it's just been part of our way for thousands of years.

    Good luck.

    Awi
    Make life into art.

  4. #14
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    Awi,
    I found your post very interesting. I have had kind of mixed results with Toradol. It seems that I have a very high tolerance for prescription drugs. It usually takes a lot of anything to work on me...and what works on most usually doesn't on me??? I have taken Demerol for my migraines in the past and have had no problem with it. It usually just puts me to sleep and then when I wake up the headache is gone. I have no problem with taking morphine...but it does not work on me...you might as well give me water. I once had lithotripsy done on one of my kidney stones....and once again...a procedure that most people find uneventful was EXTREMELY painful for me. They gave me a 5 mg Valium pill before they started...then they gave me 25 mg of Phenergan IV...they started the procedure and it began to hurt...to make a long story short...they gave me a total of 50 mg of phenergan and 20 mg of morphine. The Dr. finally said he could not give me anymore...he was afraid I would stop breathing!!! I told him to just get it over with and I laid there and cried through the rest of the procdure. When it was over I was itching so bad from all the Morphine that they gave me 25 mg of IV Benadryl....and I got up and walked out of the hospital 20 minutes later and was up until midnight that night before deciding to go to bed!!! It just did NOTHING for me...so the nurse at the hospital told me to list it as an allergy.

    What I have found to work the best for me if I HAVE to go in for a shot, is Nubain and Phenergan. This will put me out of my misery for about 8 hours and when I wake up it is gone. I hate to do that and will only do it after 3 days of misery...but sometimes I cannot get it to let up. If my migranal nasal spray does not work then I use several different things together to get them to work....I will not go into detail as I worry that someone else would try it...and I am not sure that it would be safe for anyone else, but my doc knows I do it and has never told me not to, but it does contain Benadryl. So, yes, I have tried that too...

    I think the fact that you are a shamanic healer is cool. Unfortunately I live in the panhandle of Texas. Is this something specific to American Indians? My husband is Mexican and there is something in the Mexican culture known as a curandero. Is it similar at all? Most of the curandero's I have heard of use a lot of herbs and such.

    I noticed when doing a brief search on Shamans (since I had never heard the term...sorry... ops: ) that some of the sites mentioned something about soul retrievel. Do you know anything about that? Is that something only Shamans do? I once had a friend that talked about that and found it very helpful for her when dealing with some past emotional issues. I know that is way off the subject...but I was just wondering...
    HUGGS,
    Deana

  5. #15
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    Default Soul retrieval

    Yes, I do that. It's incredibly intense. And yes, too, a "curendero" is merely the Spanish word for Healer, and a good one can be quite effective. In the Indian world, the word is "Medicine Woman" or man, of course, though traditionally (meaning more than 500 yrs ago before we lost our power to men, who were Chiefs but not Healers), and is a combination of Priestess and Healer. A Shaman (a Mongolian word) is someone who works, like the Medicine Woman (which is what I was named by my tribal elders when I turned 40--you don't call yourself that, nor "Shaman"; your teachers decide that now you haved reach the point where you can be called that)--

    My digression was so long I lost the sense of my sentence. A Shaman works on other planes of reality, travelling to the lower world with Spirit Guides, to do all sorts of work, including Soul Retrieval, which is quite advanced. I first teach a serious grounding excercise, and without someone's having mastered that and doing several sessions (@2hrs ea, though one was 5!) first--I won't take anyone on a journey, even to be reuinited with their Medicine Animal or to meet with someone or just to see what's up--one can't really predict what will happen on a Journey) relatively simple things, until they are PERFECT at their grounding work. It may seem like a contradiction, but unless one is so thoroughly rooted to this world, this reality, this physical place, their own bodies, it's not wise (or even possible) to Journey to another level of reality. Many people have this idea that it's all very ethereal and la-di-dah spacey, but it's the reverse. If you can't travel deep inside your own body and map it, you can't handle another's. Before my 1st cystoscopy, I drew the lesions in my bladder, and it matched the drawing my Urologist did afterwards, freaking him out a bit, but if a doctor doesn't believe me when I say I can see inside my own body, I won't continue to work with him/her. They have to accept my way, just as I accept theirs. I'm lucky in my GP, who doesn't understand but does see and accepts, and who handles all the tentacles to specialists, and tries to explain that I'm an "unusual" patient (poor man!)

    Never, ever believe that someone who uses the term Shaman about himself or herself is for real if they've "taken a class" or "read a book" or don't have a life-long history of profound spiritual and or healing work. I was a "True Dreamer" at 4, and became a Healer at 9-10. I worked helping the dying in my local "Convalescent Hospital" which was what they were euphamistically called, at 12 & 13, in defiance of all the rules, but I'd gone there with my friend's Mom who was the program director, had played games, played the piano, sang, etc., then found myself drawn to the rooms where the dying patients were. When the nurses and Director saw that a "patient's" vitals calmed when I was there, and that there was panic even in an unconscious patient when I was made to leave, I was allowed to stay, and for 2 years, while my mother thought I was at my friend's house overnight, I was regularly by the side of dying women and men, being with them, loving them, easing their way out the door. It was easy for me and enormously gratifying to know I was able to help make someone's exit into a joyful good-bye intstead of a lonely struggle.

    For me, the veil between the worlds is so thin I can see through it, and that's always been the case. For most, there's a wall that they don't even perceive. My brother says he experiences "it" as being in a room full of people (the world), with a door in the corner of the room, and he can see me going in and out of the door with ease, and bringing back useful information and gifts from whatever is beyond it, but he himself cannot even imagine walking over to the door, let alone putting his hand on the knob. That's a good image for those who have some idea of the work, but not a clear idea of themselves as being able to cross over. In some South American, Meso-American tribes, peyote is used to break down the wall, but my childhood did that for me--I was tortured, literally--and I turned that into a path for gaining strength and power, which I knew could become power to help others in ways that aren't generally available in the White world. Intense suffering is often a way to experience "the other side."

    There's a line in the film, "Velvet Goldmine" which surprised me. After seeing Kurt Wild perform, Brian is jealous that the extremity of Wild's performance hadn't been done first by him. His wife, played brilliantly by Terri Collette, who knows as they all do, that Wild was institutionalized and shock-treated, says, "When you've been abused like that, you've touched the stars." If one can make such experiences into a path, if one has already experienced precognition, true-dreaming, very concrete "psychic" abilities (hate that word), then that path becomes more likely, and so a Shaman is born.

    Or a nutcase.

    It's a choice, and I've spent my whole life in service to that choice, healing in very many ways. I became a trained Home Birth Midwife, as I loved Gatekeeper work so much (life and death, which isn't to say one enjoys the process of another's death, but that one can be useful to the dying person, rather than afraid of them and it--the BIG IT). To be there when a spirit enters or leaves a body is an incredible experience, and is, too, an honor that cannot be expressed. Few are called to this odd life, and fewer answer the call. It is a calling. In my culture, money is not accepted. I always ask clients to bring whatever they feel moved to give. If they want to imagine that we're living in a tribal village, what do they think they'd be doing? And then to make an offering that feels right. Some have brought a single orchid, some a bag of groceries, a plant for the garden, a beautiful golden-red leaf they found. There is no monetary value assigned. They all get at least 2 hrs, and all of my attention.

    So much that can't be taught has to be learnt. To annihalate the ego, the last step. To have no investment in whether the client takes what she's learnt and acted on it or ignored it. Whether she's using the herbal treatment it took me two days to prepare....the respect of choice that must be given to others. The genuine belief that one is a vessel, not the instrument. That the energy works through me, not because of me. That I am always on call, so that if a car crashes on my corner, I do 15 minutes of CPR without a second thought, because that's why I'm here. To place myself between a man off his meds and raving and another man who hasn't noticed that he's about to be attacked, but I'm fully aware, on red-alert, and in motion the second the attacker gets out of bus-seat and am just there, hugely powerful, and an impenetrable wall between the two who orders the bus driver to stop the bus, orders the attacker to lower his knife, get off the bus, and bury the knife deep in the bottom of the trashcan outside the window and to KNOW that all of this will happen seamlessly because somehow, in that moment, all the power gained over a lifetime makes me able to do this, and then watch the crazy guy do exactly as I say while the bus waits, and then we go on our way (while the other passengers gape), and not until afterwards do I realize what I've done!! And realize that it wasn't a big deal, though others will think so. That's big Medicine, and at 10, a Cherokee woman I'd run into on a family holiday sat down beside me in a park and spoke to me, telling me I had "big medicine." I didn't know what the words meant, exactly, but I knew what she meant, and her message came at an important time--a time when I was becoming afraid of what was happening to me, and already wondering if I'd survive, no matter how I was handling it. I have found, throughout my life, that when I was stuck or starting to become afraid, I'd meet up with another person, usually an Indian (I am Cherokee, but was adopted and brought up in White Suburbia, a life which was, in itself, a challenge), who'd somehow take me by the shoulders and turn me just a little bit THIS way, so I'd see my path again, and be able to continue my work. I have been incredibly fortunate.

    I did survive, and after such a life, have become a bit of a force to reckon with, but not negatively. Even sick, I heal. And I make art. That's what I do--the two things I was born here to do. And I've always been soooooo! grateful that I knew what I was here for. That was a gift in the midst of such a childhood.

    I've revealed a great deal more about myself than perhaps I should have done, but it's really important, especially now in these New Age days, that those who are interested in such things know how to distinguish between a "real" Shaman or Medicine Person, and someone who uses that title casually. One cannot take a class and become a person of power, which is what a Shaman or Medicine Person is. And if one learns just a little bit, then practices, it can be dangerous. "A little learning is a dangerous thing" is never more true than when the learning is in the realm of spiritual work.

    So....you can email me if you want to talk more! I think I more than answered your question.

    In your neighborhood you should be able to find some people trained in the Meso/South American traditions, though language could be a barrier, unless you speak Spanish. There is a very well-trained and informative woman named-- can't remember it--she wrote a book about soul retrieval which is around here somewhere. She doesn't try to teach you to do it yourself, but she explains how and why it works. You should be able to find her on-line. I'm drawing a complete blank. Ah!!! Sandra Ingerman. The "s" was dancing around in my tired brain, but not connecting itself to anything!! Of course, if we were talking about tennis or something, I'd remember her name with no problem!

    Do email me if you want to talk more. Take care of yourself, and I'm sorry your head keeps falling off. It makes me so mad, because headaches are my speciality, and I want you all to come over to my house and get better!! Without drugs!! Unfortunately, as with most Healers, there is little I can do for myself. This is the most ironic irony of all the ironies we sick Healers deal with.

    A big embrace, Awi
    Make life into art.

  6. #16
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    Hi Val,

    I used to use Co-prox, but its already off the market here. I use Codydramol now, seems to be pretty efficient if I catch the migraine early

    Claire

    Quote Originally Posted by val
    hi,
    I use coproxamol at present but it is being taken off the market. injections- 33 years of nursing I guess if it came to it I could self inject.Can control them at present but when co prox comes off the market I might have a problem.
    Val

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    I suffered migraine headaches for many years. I am currenty receiving Botox injects on my face due to hemi facial spasms and thank the lord, my migraines are gone. I start getting them back when the Botox wears off. I'm a big believer that Botox is the answer our severe headaches.

    Good Luck

  8. #18
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    I've just read the whole thread again and decided to expand my answer

    If I feel a migraine coming on, as I do now... I make sure I put on my glasses, I only need them for reading, usually don't, but helps when I've already got strain on my vision like a migraine. I tend to take co-dydramol, but lately, that hasn't worked.

    Since I had Glandular Fever aged 17, I've had real trouble with migraines on and off, I've been free of them for a couple of years, but the last few months, they've been daily :?

    Having said that, the rest of the symptoms I've been having, such as fatigue, painful joints, rash on my cheeks etc that have sent me to the lupus clinic started again at the same time.

    My migraines are generally frontal, either just at my temples or all over the front part of my skull and always cause visual disturbances and nausea. I get zig zag lines infront of my eyes, can't stand strong colours such, as say a bright red folder as it flashes and people wearing stripes... the lines go all over the place and disorientate me, not nice at all.

    I only use NSAIDs and Codydramol at the moment as I've been to my GP for so many things, I'd prefer to wait till I see the specialist to bring this up as a major problem. Most of the time in the last month, those painkillers have done less than nothing :evil:

    I feel sorry for everyone else who suffers from them, its the most distracting pain I know... closely followed by acute toothache. I can usually muddle through my joint pains, but in my head, well... it just stops me functioning!

    Cx

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