[momof2boys]

Hello everyone. I am needing some help. I was diagnosed with SLE about 4 years ago. I have been doing fairly well. I have the usual joint pain...pain is with my knees, left hip and elbows. I have had pleurisy twice and pericarditis once. I take 10 mg of prednisone and 400 mg of plaquenil every day. For the most part I have been really blessed with a great family and great rheumy that listens!

I have had "atypical" migraines for about 10 years and have taken topamax and nortriptyline as maintenance medications. I would usually average 1-2 migraines a month and 2-4 headaches a month. I thought this was good control, however my rheumy disagreed. He didn't really like what my neuro had been doing, or really the lack there of, he had been asking me to see another neuro for about 2 years but I was stubborn and didn't go (stupid!). About 6 months ago I started having horrible, pounding, throbbing, persistent headaches. I wouldn't call them migraines as they are not just on one side. They can last up to one week. I'm missing work but more important I'm missing time with my boys.

I went to see the new neuro and he was very concerned. I had an MRI/MRA. It showed old lupus vasculitis (another story on how the nurse told me about that!). Now he wants to do a lumbar puncture. He thinks I have Lupus CNS.

I'm at the point that I really don't care what they do, as long as I can get relief. I feel like my head is going to explode. I've been trying to find out exactly what they are looking for with the LP. Does any one else have headaches like this? If so what helps you with relief? I have vicodin, it helps for a minute but it is really just a band-aid.

Sorry for such a long rant and post, but thank you for your help.

Delana

 

[LolaLola]

Hello Delana, I don't know anything about what you are going through but I have a friend who gets cluster migraine. I don't know if it is the same sort of thing but she takes similar meds to you.

I hope you get some help here and I am very glad you have a good family.
x Lola

 

[pollianna]

Hi, I wondered have you looked at the foods your eating for an allergy trigger? I had what my daughter said was a migrain after eatiung bacon. The pain was terrible. Apparently nitrates can trigger but I know very little apart from that

 

[momof2boys]

Thank you both for your replies. I typically don't have problems with allergies but I'll pay closer attention to what I am eating.

 

[lazylegs]

Hi Delana,

The lumbar puncture may help paint a better picture of what is going on. It can help in diagnosing infection, bleeding around the brain, certain cancers, and inflammatory diseases like MS, Vasculits and Guillian-Barre syndrome.

Let us know when you are going to have it done.

Take care,
Lazylegs

 

[KarolH]

Hi Momof2boys and welcome to the board.

I have suffered with headaches for years. Starting 2003 they turned into horrific migraines and I have been on different meds for these. I have been diagnosed with Antiphospholipid Syndrome and I think this explains my headaches.

Have you ever been tested for this? It is also called Hughes syndrome or Sticky Blood. If not you may want to inquire about it.

My spinal taps have always shown very high protein levels....indicative of inflammation. I sure hope you get answers soon as the headaches can be life altering.

Let us know how you make out moving forward and good luck.:wink2:

 

[momof2boys]

Thanks for your replies. My MRI shows "lupus vasculitis", the only thing I can find out about that is it is associated with lupus CNS.

I keep copies of all my blood work, I am pretty sure I have been tested for APS, but honestly I'm not thinking straight these days. All of my copies are at work so I'll have to wait until am able to go back.

Hopefully I will have answers or relief soon.

Thanks again.
Delana

 

[Lily]

Hi Delana,

I'm sorry you are having such debhilitating headaches right now and I hope they find the cause and solution :hug:

I'm a bit confused by the statement:

I went to see the new neuro and he was very concerned. I had an MRI/MRA. It showed old lupus vasculitis (another story on how the nurse told me about that!). Now he wants to do a lumbar puncture. He thinks I have Lupus CNS.

óld' Lupus Vasculitis lesions look like any other brain lesions so it would be impossible to tell. The lumbar puncture may or may not reveal anything new but it needs to be done to give more clues in case it does show something. Mine was normal but my brain MRI's were not. It was not until they caught the CNSV in action on an MRA that they could positively diagnose me. That along with very typical CNSV symptoms (not just headaches) over a year were enough to convince them.

There could be other reasons for your headaches and I too think they should do tests for APS even if they have been done in the past they should be redone - things can change.

Good luck and let us know how you get along?

love
Lily

 

[onetay]

Delana,
I have very severe migrianes at times. They are so bad that I have had to take a trip to the er for a shot that is to say the least a miracle. I have had these since I was 14 yrs. old and I am 41 now. That is a long time to be in pain like that. To give you an idea what it was like: I ran a very high fever, any air or noise was like having your head blowing up, I had light problems, smell problems, touching problems ( if someone just touched me my head would throb so bad), my stomache would not hold anything in it, my body shook so bad from the fever and cold chills, and life would of been better without out me at this time. Is that close to you?

I am not saying that this will work for you, but they did a sleep study and found that I had sleep apnea. In 6 hours of sleep they found I quit breathing 76 times and it ranged from 30 sec. to 90sec. at a time. My oxygen levels would drop into the upper 70's when this would happen and that I had constant muscle movement in my body through out the night. I am sharing all this because I am wondering if they have done the sleep study on you yet?

They put me on a machine called a cpap and it has changed my life. I still do get some migraines but not as bad nor nearly as often. It is something to ask your doctor about if it sounds like something that you experienced.

 

[momof2boys]

Thank you all for your responses. I go Monday for the lumbar puncture.

Lily I was quoting the interpretation of my MRI/MRA exactly. It literally says "old lupus vasculitis". I wish I knew more, when I asked the nurse about it her response was "your lupus in your brain is stable".

I'm not kidding those were her words. First of all I didn't know I had lupus in my brain! Second thank you for telling me over the phone, so matter of fact that it is stable. (as I feel like my head is going to explode or burn off)

I've been a nurse for 14 years, and I know I am not perfect, but.......sometimes I wonder if these nurses think before they speak! I know what happened, she didn't understand the result of the MRI/MRA so she tried to explain something she didn't know anything about! I would have much rather she just said I don't understand the results, can I call you back. Just my little rant.

 

[MarshaHostetler]

Dear Delana
I read your post and almost started crying. I have never had a migraine until the morning after Christmas I woke up my head was pounding and I was sick to my stomach. There was allot of other symptoms that lead up to this also.
I am also on Topamax (50 mg a.m. and 100 mg p.m.) and Treximet (after one starts) it is still there I can function but that is about it. I have all the symptoms and history of Lupus I hope the specialist helps me with all of this. My head hurts all the time and my scalp I can not even describe how it feels.
Knowing someone understands what I am going through does not make me feel so alone. I worry that my brain is being damaged by these migraines the neurologist did an MRI and it was negative but dizziness and everything there is something not right.
Thank you for letting me get this out. I wish I could help you Delana but you have helped me more than you know.
Hugs

 

[KarolH]

How did your lumbar puncture go on Monday?

 

[momof2boys]

The procedure itself is not something I would want to repeat! The radiologist did it by "drip" method, meaning he did not extract any fluid manually, he allowed it to drip out. If the fluid stopped he would adjust the needle, and that is a strange sensation. It was uncomfortable. Then laying flat on my back for 4 hours in post surgery unit, my husband could not come back there, I was really bored. But, thank goodness not headache from the LP.

So now the waiting game for the results.

Marsha, I am no stranger to headaches! I am sorry you have joined the headache club. I do understand. I take 200mg of Topamax a day, and have for about 5 years.

 

[MarshaHostetler]

Hi Delana,
It does not sound pleasant at all. How long did they say it would take for the results?
I hope it gives you answers you deserve it after 5 years Delana!
Please let us know when you know.
Hugs

 

[momof2boys]

I'm going to try to be patient and give them until Tuesday until I call and see if the results are in. I actually feel pretty good, so I don't mind waiting. But, we all know the wolf can knock at the door any minute and that can change.

 

[MarshaHostetler]

Hi Delana,
I just noticed you live in Kansas Mo I live in St. Louis Mo! It is good to see a person from Missouri. I know what you mean I wake up thinking what kind of day am I going to have today. Then wait for the wolf to tell me.
I hope they know something for you Tuesday I hate waiting for results that could have so many answers for you.
Hugs