View Full Version : Headaches

psalm 56 3
10-03-2006, 06:24 AM
Does Lupus causes headaches? If so, why? It seems I am getting a migraine at least 2 times a week. I am not under any stress and I have no known allergies. I am at a point where I cannot stand it anymore. I have taken so much over the counter pain medicine it has caused a bleeding ulcer. My doctor put me on Prevacid for the ulcer. I take Vicodin for the pain and it does nothing to relieve the headache. Does anyone know of an effective way to get rid of a migraine?

10-03-2006, 09:22 AM
Hi Sister Psalm,

Yes, Lupus does trigger headaches (cluster and migraine) types. Our ever awesome Saysusie will stop in, I'm sure - to share her wonderful treasures of information about lupus headaches. They are bothersome - no doubt about it. It has taken me a lot of years to finally understand my triggers - I always wear sunglasses outside and in the grocery stores - those flourescent lights are magnets (for me) for headaches. Also, if I get too tired, I get horrific headaches - the kind that make you wish you could cry just to relieve the pressure !!!

So sorry you're not feelin' well, friend. If you need a diversion of any kind - I'll stop by and pick you up...and you, me and butterfly can rescue Littlered and crash Marycain's elaborate affair (just kidding, Marycain) !!!

:lol: :lol:

You may want to call your rheumatologist or family m.d. - for a prescription. Feel better soon.

Much love,

psalm 56 3
10-03-2006, 11:09 AM
I am still learning about Lupus. I could not figure out for the life of me why I was getting so many headaches. I was out cutting the lawn a few days ago, in the mid-afternoon. Shortly thereafter I got a migraine. A week back I stayed up all night and the next day I was so sick from a headache that lasted for days. My husband and I figured that maybe staying up like that did something to me. I am a little better today. I am even attempting to make a Renaissance costume! I could always use a diversion, so by all means gather up the group and lets go to Kentucky!!

10-03-2006, 11:44 AM
Hi Psalms 53; :lol:
I suffer from Lupus migraines which are exacerbated by headaches due to my TMJ and my Raynaud's...So, I really do suffer, too often, too intense and no real relief.
Unfortunately, Lupus has been known to affect the brain in many ways. It affects the brain by causing depression, memory loss seizures and other neurological problems. Often depression is one of the first signs of lupus brain disease and an important manifestation. Lupus headaches are sometimes associated with depression. Lupus Headaches may represent a significant manifestation of lupus, in particular, central nervous system involvement.
Two thirds of patients with lupus have headaches and Migraine type headaches are the most frequent type of Lupus headaches. People with lupus get headaches of the migraine type two times as much as the normal population. Some Lupus patients report headache problems going as far back as their teenage years and prior to their Lupus diagnosis.
Lupus headache are caused by lupus itself (or Hughes disease). Your doctor should do testing to determine the cause by checking blood pressure, sinuses, testing the blood for APS and a NM scan or a CT scan. Most Lupus migraine headache are treated with 20-60 mg of prednisone each day for a week. The prednisone helps lupus headache but not normal migraine headaches. Normal medication for Migraines do not help Lupus Migraines (It is a catch 22, I know). Lupus Patients who had Antiphospholipid antibodies in the blood were more likely to have lupus headache:
The Antiphospholipid Syndrome (APS)
One-third of all people with lupus have a false positive syphilis test, a positive anticardiolipin antibody or a prolonged clotting time test (PTT). Collectively these are known as the lupus anticoagulant or the antiphospholipid antibody. One-third of these patients (one-ninth of all people with lupus) will develop blood clots in various parts of the body. These patients have the antiphospholipid syndrome. When a blood clot occurs in the nervous system, it can cause a stroke. Symptoms of stroke usually include the painless onset of neurologic deficits (e.g., paralysis on one side of the body, inability to speak) without any signs of active lupus.
A stroke is managed with blood-thinning medications such as low dose aspirin, coumadin or heparin. The type of blood vessel involved and the patient's symptoms are considered when determining which medical therapy should be used.

It is not known if lupus headache is a sign that the disease is active, but most patients with lupus headaches have associated them with disease activity.. The lupus migraine headache phenomenon may also be seen more often in people who also have Raynaud's phenomenon. Lupus patients with migrainous headaches often do not have an associated family history of migraines. Somr patients report that when they suffer from Lupus migraines, they experienced visual hallucinations typical of what have been called “fortification spectres” (jagged lines that resemble an aerial view of ancient fortifications) that also occurs in classic migraine. Other patients reported flashing white lights in their visual field. Some report that their Lupus began with migrainous headaches preceding several months of all other organ system involvement. 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.
When the 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, then they most likely are a manifestation of the the Lupus 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 generally prescribed and the headaches seem to improve with the improvement of the symptoms of the disease!
I hope that this has been helpful..let me know if you need anything further!

Peace and Blessings

psalm 56 3
10-03-2006, 12:51 PM
I do see many similarities. I also have Raynauds. At least that is what I have been told. When I get near anything cold my hands and feet are extremely sensitive. My nail beds turn a bluish purple and they stay cold in the summer if you can believe that. My grandbabies are always asking why my hands are so cold.
I know my Lupus is active now and I am learning what I can and cannot do. I am no longer in denial. I was told by different rheumatologist that I did have Lupus and others would say I did not. The last one said I did and only because of the butterfly rash. I never took him seriously. I felt if the only reason you believe I have Lupus is due to a rash on my face, that is not proof enough for me. When I think back it was about that time I got so sick I could not get out of bed or take care of myself. My hair was coming out by the handfuls. That went on for a couple of weeks. I chalked it up to the medications the doctors had put me on, and quit taking them.

When I saw my doctor recently she said that the doctors look for a group of symptoms and the rash was what confirmed it for this particular doctor. What convinced me was the fluid around my heart and lungs. I figured it had to come from some where. I count myself very fortunate that I seldom have bouts with depression. I am glad you mentioned it because the few times I have become depressed I have been at a total loss as to why.

I have a pool that I know I will no longer be using. It could also explain why my physical health is best in the cooler months! I cannot believe I was not able to put all this together before now. Is there anything in particular I need to watch out for? These flares are awful.
I come to this site frequently and read what other members have to say, along with asking questions in order to educate myself about this disease.
I cannot thank all of you enough for the advice you've given me.

10-04-2006, 12:01 PM
Do not give up on your pool, especially in hot tortuous summers like the one we just experienced. One of the best things that we can do is to exercise REGULARLY and because of our inflammed and sore joints, swimming is one of the best exercises that we can do. It is a full body workout without jarring or causing harm to our joints and muscles.
In the winter, when it is too cold to put our Raynaud's effected bodies in a pool, simple yoga and beginners Pilates are very good exercise routines.
You are right about making the connection between our illnesses and symptoms that are not strictly physical (like depression, sleeplessness, moodiness etc.) Once we make the connection, we can then pay closer attention to our bodies and the signals that our bodies are giving us. We can then adjust our activities, our food intake, our environment in order to avoid those things that aggravate our symptoms and causes other symptoms to flare.
Getting to know your body and those things that occur when you are in a flare is the best way to learn what you need to avoid and/or change. Otherwise, these are the common precautions for avoiding a flare:
*Avoiding sun exposure, high-dose birth control pills, penicillin, and sulfonamides (anti-bacterial agents)
*Exercising regularly (yoga, tai chi, walking, swimming)
*Receiving flu and pneumococcal vaccines (this is a controversial issue)
*Avoid fatigue, from over exertion
*Avoid stress, it is very possible that extreme stress may play a role in triggering lupus flares (try meditation to help combat stress).

Peace and Blessings