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mrstjscott
11-25-2010, 08:16 AM
Does anybody have any problems with migranes and/or aneurysms? I have recently been diagnosed with two aneurysms and have been experiencing severe headaches with no relief from any medications.

Nonna
11-25-2010, 08:41 AM
I've been living with the knowledge of this condition since 1998.

It's very hard to cope with. You need to live quietly and calmly. Learn what your triggers are. No there are times when there is no relief from meds. A dark room, soft music and calming thoughts.

My neuro surgeon said that any migraine above a seven you need to go to the ER.

I hope this helps to know you are not alone

hugs and calming thoughts,
nonna

tgal
11-25-2010, 08:46 AM
Hi Mstr Scott. I have had migraines all my life but they almost stopped after I was spayed (LOL). They returned about 3 years ago as I became ill. I also have hypercoaguability which basically means that my blood is not the correct thickness and is at risk of clotting. I know there are a couple of other people on the board that have the High Factor Viii (or V or IX) as well. Just another crazy side effect of this thing

Bonita
11-25-2010, 02:48 PM
I also suffered with migrains when i was younger and then they seemed to go away till i was diagnosised with this diease and then i started experiecing all these weird visual disturbing things. And when my mri of the brain came back with tiny white spots on it they sent me to a neurologist and he said i had mostly occular migrains along with the headaches so he put me on verapamil 120 mgs and it stopped some of the symptoms but not all. Bonita

Saysusie
11-25-2010, 07:26 PM
I suffer with migraines that happen on a weekly basis. I've had all of the tests and scans and they've found nothing..so we have to assume that they are Lupus Migraines (as they do not respond to regular Migraine meds).
I am sorry to hear that you are dealing with migraines and aneurysms.. this must be very difficult for you. Sending you {{hugs}} as I wish that there was so much more that I could do for you

Peace and Blessings
Namaste
Saysusie

mrstjscott
11-28-2010, 11:03 AM
Hi Saysusie,
The headaches are almost always diagnosed as Lupus headaches. I get so aggravated when the doctors want to lump everything to Lupus. Years ago, I used to suffer with migraines, but someone prayed for me and they went away. However, after years of being headache free, I am experiencing headaches with the following symptoms:
1. weird, lightening-like light in the left eye
2. severe pains in the right side, back of my neck
3. throbbing on the right side of my temple
Because I been diagnosed with aneurysms, I get very afraid when I get a headache. The aneurysms are on both sides od my head - one on the left carrodid artery and the other on the right side top of head.
I have some difficult days because the disease is getting aggressive. I am not taking the meds prescribed because they make me sick. But again, today, like I always do, I say I am gonna take the meds even if they do make me feel bad. As I am typing this to you, I am suffering from bronchitis. Yay me :-(

mrstjscott
11-28-2010, 11:05 AM
Nonna, living quietly is unreasonable for me. I have been to the er twice in 24 hours and they both say that they can't do anything for me. Again, they blame it on LUPUS. Go figure.

mrstjscott
11-28-2010, 11:07 AM
LUPUS seems to get blamed for everything when the doctors can't find a diagnosis. I guess that's the name of the game for us. The weird, visual things that are going on are a little scary for me. What to do. I am tryign not to stress behind this new madness going on in my body.

Nonna
11-28-2010, 11:20 AM
I laughed when the neuro told me to live stress free. My job doesn't allow that. But I have found that a change in my life philosophy has.
1 - the work will always get done sooner or later
2 - who owns the problem me or them
3 - stop making mountains out of mole holes
4 - most important, go with the flow, you can't control life so go with it

hope this helps, to avoid the fear when the headache start treat them asap
remember not panicking is half the battle

hugs
nonna

Nonna
11-28-2010, 11:34 AM
As for the vision things ask an eye doctor about it. I have flashes of lightning lights and it is due to the vitreous detaching. So see an eye doctor and see what they say

mrstjscott
11-28-2010, 01:19 PM
Unfortunately, NOTHING helps the headaches. They are vicious and go away when they want to go away. I only fear the headaches because of the diagnosis of aneurysms. I used to have migraines when I was in my late teens and early twenties. My oldest son gets ssi because of migraines.

Saysusie
11-28-2010, 02:21 PM
It is unfortunate, but true, that Lupus Headaches do exist. I know it can be frustrating when doctors attempt to blame everything on Lupus. But sometimes, it is important that they do because such migraines can indicated CNS involvement, which can be very serious. There is a link between migaines and systemic lupus erythematosus, in particular the fact that migraines may also be related to the disease of antiphospholipid syndrome. If migraines are caused by this, they are easily treated with a course of prednisolone/Prednisone. Has your doctor mentioned testing you to see if you might have anti-phospholipid syndrome? If not, perhaps you can mention this to him as the syndrome can be treated.
Suffering from a lupus headache can be a trying experience, but by learning what causes this situation and the best ways to go about treating it, you can better control the pain and find quick relief.Many of us (at least 60%) who are suffering from lupus will experience head pain at some point or another. Just over half of these cases tend to be migraine related headaches, while the other half of those impacted are suffering from tension related headaches.
The most common cause of a lupus headache is blood vessels that are constricting irregularly, altering the flow of the blood to the brain. Sometimes, Lupus headaches can be caused by vasculitis, which is inflammation of the blood vessels, where you'll see small red coloured dots under the skin.

The symptoms of a lupus-related headache can range from moderate to really quite severe, and can last from as little as an hour or two to several days. Included in the symptoms of Lupus headaches are nausea, vomiting, sensitivity to light and sound, sensitivity to smell, throbbing or pulsating pain running down the neck or spinal column, as well as pain that gets much worse with movement. It is also common for Lupus headaches to result in auras (such as those you described). These auras can be
flashing/flickering lights, zigzag lines and even temporary blindness, numbness, tingling sensations and slurred speech. Other aura symptoms common with Lupus headaches include a stiff neck, weakness on one side, partial paralysis, confusion or fainting. Again, lupus migraines may be related to antiphospholipid syndrome, some thing that your doctor should test you for and prescribe appropriate treatment. Also, as I mentioned before, it is important to know that Lupus migraines DO NOT respond to traditional migraine treatments/medications. In most cases, the underlying condition (lupus and/or antiphospholipid syndrome) must be treated and the migraines will respond positively to that treatment.


I wish you the very best and let us know how you are doing.


Peace and Blessings
Namaste
Saysusie





Here are a couple of websites that will give you some information about Lupus Headaches, Hopefully they will be helpful to you:

http://www.relieve-migraine-headache.com/lupus-headache.html

http://www.ehow.com/way_5436637_lupus-migraine-relief.html

tgal
11-28-2010, 04:13 PM
Susie you said something in the above post that caught my attention. On my last MRI they noticed that the white spots were not as bad but the radiologist made a comment about decreased blood flow into the brain at the base of my head (where my neck and head meet). Are you saying this could be a lupus thing?

Saysusie
11-29-2010, 06:25 PM
Decreased blood flow is the most common cause of headaches/migraines. If the decreased blood flow is due to inflammation, then yes, it could be caused by Lupus. It would be necessary to determine what is causing the inflammation. So, your doctors will have to evaluate all 3 of these indicators. Most of the time, once they see decreased blood flow, they say that this is the cause of the headaches and will go no further (except to prescribe migraine medication). Since your doctors have already determined that there is decreased blood flow, it might be up to you to ask them to try to find the reason for the decrease, especially since you have Lupus and are concerned about inflammation and the cause of that inflammation. If it is determined to be Lupus, an entirely different treatment is needed because traditional Migraine medication does not work for these issues.
I hope that I've given you a explanation that is helpful..let me know if you need anything more :-)

Peace and Blessings
Namaste
Saysusie

magistramarla
12-01-2010, 05:59 PM
I just lost a day to a migraine headache yesterday.
Mine have usually been allergy-driven. One of the worst ones I ever had was after being trapped in a room with people smoking.
This most recent one seems to be caused by hormones. I'm thinking that it's because I'm starting menopause - fun, fun, fun!
Hugs,
Marla