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.
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.
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!
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:
opioids, narcotics that include meperidine and butorphanol
corticosteroids include hydrocortisone and dexamethasone
Peace and Blessings
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.
A nearly 100% headache cure (plus joint pain relief)
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.
Make life into art.
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.
Maybe seems extreme because of injection?
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.
Make life into art.
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.
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...