View Full Version : Lupus migraine

07-26-2005, 08:56 AM
Hello all - I'm new here but have been reading through some of the posts - very informative group!

I wanted to ask about the lupus migraine. I'm wondering if someone can describe it to me. I get various migraines, some are linked to my many food intolerances (when I eat the offending food by accident) and then some are hormone-related.

I have not been diagnosed with lupus but saw a rheumatologist earlier this month and am going back on the 5th of August as I had an ANA of 1:320, nucleolar. (since re-tested at 1:160, still nucleolar). My physical symptoms are fatigue, hand and feet aches and stiffness, migraines, pleurisy, IBS, and former Raynaud's (four years active, but not in the past 5 years). I also am diagnosed as non-Celiac gluten-intolerant (autoimmune) and hypoglycemic. My other food problems include nightshade vegetables (tomatoes, peppers, potatoes, eggplant, tobacco, kava kava) and allergies to shellfish and aspergillus (mold, used in citric acid, black tea, fermented soy products).

My migraines are usually on the left side behind my eye, but also wrap around my head and down my neck, which is why I was repeatedly misdiagnosed as having tension headaches, not migraines, for many years. But most of the time, taking a triptan like Imitrex or Frova fixes me up.

I don't see auras or anything like that, and don't often get nauseated with them unless I ate something that I"m sensitive to.

Anyway, just wondering if anyone has any experience with lupus migraines and to see if mine are anything like them.


07-26-2005, 03:04 PM
Hi again!

Yes, that sounds familiar... minehave never been so bad I lost time at work, but are the "hemisphere headaches" (I swear, I can feel every crevace of my brain!) Rest, herbal tea, tylenol or aspirin take the edge off. If they're really bad, I do aspirin and caffinated coffee. THAT helps!

I didn't connect them with the lupus at first, it wasn't after I'd done some reading that I learned there was some connection.

07-26-2005, 03:40 PM
Good description - I feel like I know every crevice in my brain, too. I had a horrible one last fall, lasted 13 days, when it came on (very fast) it felt like this blood vessel or something behind my eye was blowing up like one of those ballons the clowns twist into an animal at the fair! Ever since that one, nearly every migraine affects that spot, except the ones I get when I eat shellfish - those just feel like a layer of acid moving back and forth through my brain. Oh joy!


08-07-2005, 10:48 AM
I get lupus migraines frequently. They are generally located in the top and front of my head. However, I've also had stress headaches (starting at the base of my skull) which develop into lupus migraines. Compared with the general population, lupus patients are perhaps twice as likely to suffer from migraine-like headaches. Headaches represent another typical symptom of everyday life and minor illnesses, and at the same time may represent a significant manifestation of lupus, in particular, central nervous system involvement.
Here is an article I found about Lupus Migraine Headaches:

" Migraine headaches have generally been divided into two types, common and classic migraine. Common migraines occur as a throbbing pain on one side or occasionally both sides of the head, affecting women more often than men. They may last for hours or days. Classic migraine has similar features but is associated with nausea. The aura may include a variety of symptoms and, in particular, includes visual symptoms such as bright lights, lines, patterns or other distortions. It is the classic pattern of migraine which seems to have a specific association with lupus.
Regardless of the specific pattern, whenever headaches are unusually prolonged and unresponsive to the usual pain relieving medications, they are likely to represent symptoms of lupus itself. In fact, one group of investigators in Toronto, in developing a scale to measure disease activity in lupus, found that such intractable headaches occurred frequently enough to be considered one of the prime symptoms for judging the activity of Lupus.
Unlike the more typical pattern of more classic migraine, lupus patients with migrainous headaches often do not have an associated family history of migraines and their headaches typically have begun in association with the activity of their lupus. Kenneth Brandt, a rheumatologist at the Indiana University School of Medicine, and Simmons Lessell, an ophthalmologist at Boston University School of Medicine, have been particularly helpful in clarifying the relationships between migrainous phenomenon and lupus. In their original studies they found an association with changes in the circulation of the back part of the brain where the visual part of the cortex is located. Several of their patients experienced visual hallucinations typical of what have been called ďfortification spectresĒ (jagged lines that resemble an aerial view of ancient fortifications) that occur in classic migraine. Other patients reported flashing white lights in the visual field. One of their patient's illness began with migrainous headaches preceding several months of all other organ system involvement due to lupus. In some cases the visual symptoms were more prominent than actual pain of headache. In several cases the frequency and severity of the pattern of migrainous headaches in SLE resolved as other features of the disease including arthritis, pleuritis and rashes improved with treatment.
It is interesting that more extensive surveys of patients with classic or common migraine have revealed a variety of common signs and symptoms beginning many hours before the onset of the headache. These symptoms include loss of strength and energy, painful sensitivity to sight and sound, whiteness of the face or head, shivers, irritability and a variety of intellectual disturbances including difficulty concentrating, reading, writing, speaking, and blurred vision and nausea. One wonders whether some of the changes in concentration and thinking reported by lupus patients are symptoms of a migrainous process caused by spasm of the arteries of the brain. There is at least one report, in fact, of fleeting blindness as a manifestation of migraine in patients with lupus which was presumed to be due to spasm of the central retinal artery of the brain. Treatment with nifedipine, an oral calcium channel blocker which dilates the blood vessels, has been successful in relieving the symptom.
In any event, the important point to remember is that when headaches are intractable and not relieved by the usual pain relievers, or when they involve specific hallucinations or changes such as fleeting blindness associated with migrainous phenomenon, they most likely represent a manifestation of the underlying disease process.

Treatment with the usual medications for lupus including steroids, non-steroidal anti-inflammatory medications, and Plaquenil, in addition to the use of drugs like nifedipine, which can dilate the arteries, are usually considered for these types of migraine headaches due to Lupus.
In general, health care professionals develop a migraine treatment plan depending on the frequency of migraine headaches. Infrequent headaches, which come once or twice a month, are usually treated with a fast-acting, acute-type medication that responds to the occurrence of a headache and relieves head pain, nausea and sensitivity to bright light and/or sound. Women who have migraines more frequently need a different strategy; a preventive medication is often recommended.

For frequent headaches-three or more times a month-patients may be directed to take a daily medication aimed at preventing the migraine from starting. Migraine-specific medications as well as antidepressants, which adjust serotonin levels, are often prescribed. Heart medication such as beta blockers and calcium channel blockers are commonly used for migraine prevention. Sometimes seizure-controlling medications may be used to control serotonin levels and minimize migraine occurrences.

One of the most commonly used class of drugs for migraines are serotonin receptor agonists, also known as triptans. Scientists are not sure exactly how they work, but the drugs reduce the pain of migraines and symptoms, such as auras. Brand names include: Amerge, Maxalt, Imitrex, Zomig, Axert, Frova and Relpax. They can be administrated in a variety of ways: orally, nasally through a spray and by injection. The fastest acting and most effective may be the injectable form.

Research suggests that triptans for the treatment of migraines are most effective in sufferers who also experience the associated skin sensitivity know as cutaneous allodynia.

Because ergotamine tartrate and dihydroergotamine (DHE) can cause nausea and vomiting, they may be combined with anti-nausea drugs. Experts caution that ergotamine tartrate should not be taken in excess or by people who have angina pectoris; severe hypertension; vascular, liver or kidney disease. The contraindications to DHE are similar to those of ergotamine. DHE should not be used by pregnant women. Patients who are unable to take these medications may benefit from other drugs that constrict dilated blood vessels or help reduce blood vessel inflammation.

For prevention, beta-blockers, which stop blood vessel dilation, may be prescribed. They include the drugs propanolol hydrochloride (Inderal), atenolol (Tenormin), metoprolol (Lopressor), nadolol (Corgard) and timolol maleate (Blocadren). Additionally, carvedilol (Coreg) has been shown in several clinical trials to be effective in preventing migraine.

Calcium channel blockers are another commonly used preventative medication, although studies of their effectiveness have shown mixed results. They usually work slowly, taking from two to eight weeks before any improvement is seen. Common calcium channel blockers include: verapamil (Calan, Isoptin), nifedipine (Procardia, Adalat) and diltiazem (Cardizem).

Other drugs used to prevent migraine include:

acetaminophen, aspirin, caffeine (Excedrin Migraine) (not recommended for migraine prevention.used for acute pain relief)

nonsteroidal anti-inflammatory drugs (NSAIDs) have been found to diminish both the severity of migraine attacks and their duration (seldom recommended for migraine prevention.used for acute pain relief)

divalproex sodium (Depakote), an anticonvulsant that has been widely used for migraine prophylaxis

amitriptyline, one in a class of antidepressants known as tricyclics. Others include doxepin, nortriptyline and protriptyline

selective serotonin reuptake inhibitors, or SSRIs, another class of antidepressants that include fluoxetine, paroxetine and sertraline

atypical antidepressants, such as venlafaxine (Effexor), mirtazapine (Remeron), and bupropion (Wellbutrin) may also help some patients by inhibiting reuptake of the neurotransmitters serotonin, norepinephrine, and dopamine

Medications used for emergency relief of severe migraine pain that does not respond to other drugs (these drugs are not used for long-term treatment or prevention of migraines) include:

dihydroergotamine (DHE-45)

opioids, narcotics that include meperidine and butorphanol

corticosteroids include hydrocortisone and dexamethasone

Peace and Blessings

08-08-2005, 08:09 AM
Wow, that's an awesome amount of information! Thanks Saysusie!

It's hard for me to determine the cause of many of my migraines, I currently have food issues (gluten, nightshades, shellfish, refined sugars, some molds) and they all cause migraines/headaches. Also hormone issues, though those are finally getting better because of supplements. I've just had a lot of headaches/migraines the last 2-3 months, same time I've had my symptoms of joint pains and chest pains so I was wondering if there is a connection.


08-15-2005, 07:13 AM
Hello to all those whose heads explode regularly. Mine does when my temp rises, when Iíve been out-of-doors, itís too hot, or just becauseÖ

I have found that 60mg of Toradol, (aka Ketorolac) is virtually 100% effective even on the worst of all inflammatory headaches, and without the vomiting of other ďcures.Ē I self-inject it intra-muscularly, which you can learn to do if your doctor will let a nurse teach you. Then you can get a prescription for it and syringes and wonít have to go to the ER. If you donít have this option, ask for it at the ER; as itís not a narcotic and you have an inflammatory disease, they will understand the request. You will also experience the lessening of inflammation in your joints within 20 mins., and will feel much, much better. It is also often given with Benadryl, another anti-inflammatory, anti-histamine, and if youíre in the ER, ask for an IV, as the fluid alone will go a long way towards reducing the pain. If youíre vomiting, you can ask for (or may just get) a very effective combination of IV fluids with 60mg of Toradol, some Benadryl (the dosage via IV is different than in a pill, so Iím not sure of how much they give me), and Phenergan to stop the vomiting. This is a non-narcotic, headache and joint-pain killing combo that will help you to feel better all over. I strongly urge anyone with bad Lupus to get Toradol and learn to inject it. Most doctors will be fine with this (a long time ago, before I was precisely diagnosed, I couldnít get my doctor to give me even Codeine for excruciating bleeding lesions in my urinary tract, but she gladly gave me Toradol, so itís worth a try and helps so much on those days when the low-pressure weather has crushed your joints into agony). Generally, one practices on oranges to learn to do IM injections. Theyíre not difficult. IV injections are hard and painful, and even I canít do them (Iím a trained Midwife, and while Iíve done IV injections on animals in a lab at Yale, Iíve never even tried on myself.)

If youíre at home and donít have Toradol, try 50mg. Benadryl and a Vivarin or other caffeine pill. The caffeine will constrict the capillaries (this is why itís an ingredient in Excedrin--headaches are caused by over-dilation of the capillaries in the brain). Itís okay to add a bit of Codeine or Vicodin, but you probably wonít need it. In the hospital, Iíve been given Toradol with 10mg of Morphine Sulfate, which I also have at home, but I find I donít usually need it after I get the Toradol into my system. Toradol is very hard on the stomach lining, even though itís entering your body via the bloodstream--youíll feel heat in your stomach. Always take Maalox or TUMS when you get it. You cannot take more than 60mgs three times/week without endangering your platelet count, so use it wisely if you get it. I also always start with 30mg (it comes in 2cc vials, 30mg/cc to total 60mg). It also can make menstrual bleeding heavier and more painful, and since many headaches are pre-menstrual you have to weigh the cost of the current headache pain against the cost of the increased menstrual cramps pain. I always, then, start with 30mg and try Benadryl with it in order to minimize menstrual pain. If you have had a dose, you MUST tell any doctor about to cut you open for any reason. They will wait until itís out of your system as it can prevent clotting (unless itís an emergency). But for all its challenges, I really recommend Toradol for those killer headaches, or for severe episodes of joint pain. The side-effects of steroids are a thousand times worse, and now that Iím pretty stable, I only take Prednisone 3x/year in ďcool-downĒ doses of about 10 days. It has no effect on headaches anyway.

I do not recommend ergotamines of any kind, as they overconstrict the capillaries, leading to a next-day rebound headache of even greater proportions when the capillaries overdilate in order to compensate for the effect of the ergot. I especially warn you away from an IV delivery of ergotamines, as the constriction of the heart and lung muscles causes the sensation of being crushed. Itís actually pretty terrifying. And you always need an anti-emetic to keep your stomach from out-of-control vomiting (ergot constricts all the flat muscles of the body); phenergan and compazine are commonly given. The inhaled migraine-relief drugs are often dangerous to the heart, causing arrythmia or tachycardia. Check out the literature on all of them--they're relatively new and some are associated with heart attacks, so read up on them. Imitrex nearly killed me, so be careful. The injections are more dangerous than the pills, but in its first year out, 80 people died of heart failure immediately after usage.

In my youth, I had severe migraines (which felt totally different from Lupus headaches) and that was when Toradol was first given to me. Presumably all those anti-depressants Susie listed worked at least once for someone, somewhere, but I have tried nearly all of them during those migraine years, and they never prevented a migraine, which came when I was pre-menstrual, and with the same predictability. I donít know a single woman theyíve helped, but hey--who knows? Many of them have dreadful side effects, so use caution. As with all meds, the ďcureĒ is sometimes worse than the disease.

If your headaches are really, really bad, talk to your doc about Toradol. Itís just about the only drug that I use without feeling worse for having done so. Just watch your tummy.

And once youíre not in agony, meditate to keep the headache from recurring, use the lack of muscle pain to streeeetch your shoulders and neck, and call an accupuncturist. This can be a great headache phrophylaxsis.

Good luck.

08-15-2005, 03:06 PM
Not sure this is the answer--a bit extreme lol but I used to have dreadful migraines, put me to bed frequently but thanks to my APS I ended up with a hysterectomy, the migraines have gone. They used to go right through my left eye as described above. I now get a pain above my left ear don't know what it is but its severe when it comes.

08-16-2005, 04:39 AM
Hi Val. Toradol is a pretty common treatment for inflammatory headaches, though if you're not used to the idea of self-injection, it may sound 'extreme'. I can't move my head or open my eyes when I have these headaches--the pressure inside my head is unendurable and nothing else has worked, so for me, a quick shot that clears it in minutes is a gift, but I can understand an aversion to needles.

You can still try the Benadryl/Caffeine pill treatment. It's nowhere near as extreme, but still is very effective. But if you do end up in the hospital with a headache, try asking for Toradol so that you can experience the relief it affords. And ask for an IV line to put it in, as the fluids alone will help. At least there, they have to do all the sticking!

I also get intense muscle pain in the same places everytime it flares up, and the Toradol gets rid of that, too, so I find it worth it. But I'm well used to needles, and I know others, even those who take really heavy-duty meds in pill form who can't stand the idea of sticking themselves with a needle. Whatever works for you..

You didn't mention...have you tried Benadlryl and/or caffeine? That may do for you just fine. Take care of yourself.

08-16-2005, 05:30 AM
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.

08-16-2005, 07:59 PM
I have had migraines for 7 years. It has been my experience that everyone is different in what meds will work for them. Mine are mostly hormonal, although I will get one if I get too little sleep. They do not seem to be food related...although I know a lot are. They kind of remind me of lupus....different with everyone. I sometimes have an aura...sometimes not. I frequently have a violent spell of throwing up BEFORE they begin...and sometimes that is my first clue. My migraines are on my right side. I also have right sided Trigeminal neuralgia...along with a new headache that started a couple of months ago...promting me to go once again to my neuro...who sent me to a rheumy after finding out that my labwork was off....so I have had somekind of headache EVERYDAY for the last 2 1/2 months. IT IS DRIVING ME NUTS! My migraines do not seem to respond to anything very well. I have taken every kind of the Triptans, unless they have come out with something new....Imitrex, Frova, Maxalt, Axert, Amerge, Relpax, Zomig....I have taken some preventatives...although not all of them....what has worked the best for me...and even then only 50% of the time, is Migranal nasal spray....it is the nasal form of DHE with some caffeine. I know it can be dangerous. But you can actually have a stroke from a migraine if it continues too long. Mine have been known to last 5 days...I'm talking EXCRUTIATING pain! I once went to the ER and the doc gave me a shot of Toradol with Compazine... It made me feel like my skin was going to crawl off my body!!! I came off the stretcher and walked around the room for 30 minutes wanting to climb the walls, until they finally gave me Cogentin to make it stop!!! I finally just went home in pain for fear of what else they would give me! My Pain Management Dr. said that is often a side effect of Compazine. She even gave me her home phone number to make sure that did not happen again. I have had several MRI's of the brain that have only showed lesions consistent with those who have chronic migraines...I can't help but wonder if they are lupus related. SO...all I know is that there does not seem to be one answer for what might work. It is often a trial and error process. I am glad you have found soemthing that works for you. I wish I could find something that would make my current headache go away. It is not as severe as my migraines...but after 2 1/2 months it can sure wear you down!!! You guys pray for me that my rheumy will lead me in the right direction. My life has really been miserable for several months now. He is currently testing me for many things...as I am sure many of you have had to go through...starting with testing for a pheochromocytoma.....so we will see. I wish you all many headache free days...:)


08-16-2005, 09:12 PM
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.

08-17-2005, 07:37 AM
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...

08-18-2005, 03:06 PM
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.


08-18-2005, 07:52 PM
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... :oops: ) 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...:)

08-20-2005, 04:06 PM
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

08-20-2005, 04:40 PM
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 :)


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.

09-09-2005, 09:00 PM
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

09-10-2005, 03:00 PM
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!