Blackout spell.. lupus related?

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LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 6/12/2013 2:00 PM (GMT -6)   
Hi everyone!
 
I've been battling lupus non-stop for the past year and a half.. I beat one thing and have something else happen, story of my life. I was doing better and had managed to wean off of prednisone for 9 WHOLE WEEKS! Then I flared again, having severe back and hip pain and right leg weakness (which continues), and back on prednisone I went. I was dealing with the pain but struggling to make it to work or through my entire 12 hour work day b/c I'm a ICU RN (thank God for FMLA and a great group of coworkers). So on prednisone and cellcept, not feeling much better and taking tons of pain meds.. which I am NOT a fan of. I was trying to be as normal as I could be at 25 with lupus.
 
So last week, I drove to Walmart and while there I remember not feeling well, my heart was racing (which I passed off to prednisone), chest pain, nausea, and overall achy. In one of the aisles, I remember feeling like I was going to pass out. I stopped and held on to my cart for a bit until it passed. After it passed, I was very confused. I forgot where I was and what I was doing. I have no idea how long I wandered around Walmart, I didn't know what I bought or how much I spent (until I got home and looked at the receipts later that night). I remember the cashier talking to me about my soda and I couldn't form words to reply to her. Evidently, I stopped at Kohl's and returned some clothes also. For the most part, I only remember bits and pieces of that day. I remember trying to drive and feeling so tired and just telling myself to keep my eyes open. I could not comprehend what was happening or where I was. I couldn't even process enough to call someone to come get me. I made it home, thank God, without getting into an accident or getting lost. Luckily, I guess my body just went into autopilot.
 
So I went to my rheumy and had a total meltdown. I told her I couldn't keep up with this life. I don't have one. I'm depressed and anxious (which is not like me at all), I'm crying a lot and having some suicidal thoughts. I can't go do anything without "paying for it" the next 2 or 3 days. I can barely make it to work and now I can't even go out by myself. She is hoping this "spell" was medication related but I have had one other episode previously (luckily that time, my husband found me wandering around). So she cold turkey took me off of cellcept and decreased my prednisone. She said frankly I can't feel any worse than what I already do, so what's it going to hurt? She also sent me for another brain MRI (which I had yesterday). She's not allowing me to work for 10 days, for fear I could hurt myself or a patient by accident just because I'm sick and its not my fault.
 
I guess my question for all of you is.. has this ever happened to anyone else? Am I completely crazy? Because I'm starting to feel that way. I was doing some research and found that it could have been a seizure. I'm scared to say anything to her about a seizure for fear of more tests and her possibly not letting me work at all. And if I'm diagnosed with a seizure disorder, I will not be allowed to drive for at least 6 months after meds are regulated. I don't want to give up my job. This stupid disease has already taken so much from me. Also, my husband and I were thinking maybe I need to take a little period of short term disability (since I pay into it, and at this point I'm missing so much work and have no more ETO that I would make more on STD than I do now). Do you think this is a good idea? I don't know what she's going to suggest next but I've tried so many pills and nothing is working. I'm worried my next route is IV meds.. and Benlysta is NOT covered by my insurance (although my rheumy said she would fight that). Just the medication is $56,000 a year, not including the infusion costs. What are your experiences with other IV meds?
 
Sorry this is long winded, I'm just overwhelmed and don't know where to turn. I go back to see my rheumy tomorrow so hopefully I'll be able to give an update. Thanks for listening. ~Nicole

Endometriosis 2011, Lupus & Raynaud's March 2012

Meds- Lo Loestrin Fe, Plaquenil, Prednisone, CellCept, Prilosec, Celebrex, Tramadol

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/12/2013 2:35 PM (GMT -6)   
Oh, my! I'm sure you were terrified.

Seizures do come along with lupus. You really need to tell everything to your doctor. It's the only way you're going to feel better.

I'm a strong believer in STD/LTD. It's the only way I'm able to pay my bills right now. No one says you have to quit being a nurse. Pause for awhile and when things are good again go back to what you love. Lord knows, we need devoted nurses like you. :)

There is other meds besides Benlysta...MTX, Humira...
There is others here who have tried Benlysta with little to no results. So far it's looking like a dud in my opinion.

Are you photosensitive, too? The fluorescent lighting in the stores could of triggered it.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 6/12/2013 2:52 PM (GMT -6)   
Generally Lupus is treated with Plaquenil, to reduce the progression of the disease. This is often the first treatment and is continued while other meds are used to address symptoms. You didn't mention it, so I'm wondering?

Then prednisone is added to address inflammation -- inflammation in the brain can reduce blood flow and affect thinking patterns. Since you came off the prednisone recently, I wonder if she checked the inflammation markers in your blood? It may be that you have increased inflammation and need to get back on some prednisone.

While continuing to take those 2 meds, these 3 are tried: Imuran, Cellcept, and MTX. People react differently to these -- for instance, Imuran did nothing for me, but Cellcept gave me back my cognitive processing! Others get great results with Imuran, but nothing with Cellcept...it all varies and no one knows which of these 3 might work for which patient.

There are several people on this forum who have tried Benlysta -- a couple have had good results, a couple have not - search for Benlysta and you will find everyone's reports on how it worked for them.

Also, even if it was a seizure-like episode, that doesn't mean you'll be diagnosed with a seizure disorder. It sometimes (rarely) happens with Lupus patients. I had an episode similar to what you mention, fortunately I was able to pull over and have someone come get me. My rheumy increased the prednisone and I never had another episode.

Since then the Cellcept has made my Lupus "quiet" (no remission wording for us!) and I've completely come off Prednisone. There is hope! Sometimes we just need to rest and escape from worry for a few weeks -- worry can trigger lupus flares very easily! -- so a few weeks off might be just the thing.

Keep in touch!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

MostlyBode
New Member


Date Joined Jun 2013
Total Posts : 3
   Posted 6/12/2013 4:24 PM (GMT -6)   
I'm sorry to say as soon as I read what you experienced at the store I thought "seizure." The blacking out, memory loss and disorientation are classic symptoms. I had two grand mal seizures before I was diagnosed with a brain tumor and throughout that whole process I learned quite a bit about seizures, unfortunately.

Going on an anti-seizure medication definitely beats the alternative which is living in fear of another seizure and possibly endangering yourself and others. You need to be honest with your doctor. Bad things can happen if seizure activity is not controlled.

I hope you feel better soon.

Hannahkayla
New Member


Date Joined Jun 2013
Total Posts : 1
   Posted 6/13/2013 12:12 AM (GMT -6)   
Hi Nicole
You're not crazy at all. Something very similar happened to me. I'm 27 and was diagnosed when I was 16 with lupus, ra, and raynauds. I'm on cellcept and prednisone also. One day I just kind of blacked out. I don't really remember much and the person I was with didn't know I was sick.
I spoke to my doctor about it but never figured out what or why it happened. I hope everything gets better with you but you're not crazy and things will get
better.
let me know if there is anything I can do. I feel like I've been through everything at this point.
Hope this helps,
Hannah

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/13/2013 12:44 AM (GMT -6)   
Welcome, Hannah. Be sure to post an introduction thread.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 6/13/2013 2:19 AM (GMT -6)   
Thanks everyone for your feedback! I want to make sure I reply to everyone's questions so..
 
Couchtater- I am sensitive to the sun but I don't really know about fluorescent light. The sun eats me alive if I'm out in it without sunscreen but I haven't really ever paid attention to the fluorescents.. I mean I work all day in them and I guess that could make a difference. I wear sunscreen every day no matter if I'm just at home or going out so hopefully that's helping.
 
Lynnwood- I've been on plaquenil since I got diagnosed a year and a half ago. I've tried MTX orally, was on the max dose my doc wanted to put me on then it just started making me sick. Been on Imuran with no success and leflunomide which ended up giving me severe diarrhea and landed me in the hospital. I was on Cellcept up until this episode. Cellcept did seem to make a difference but I never fully "felt better." That's why I wondered if I continued on Cellcept and added an IV med if that could possibly kick it. As for my labs.. my sed rate and stuff have only ever been elevated when I have an infection or when I had sepsis. That's the part that's most frustrating.. my labs never scream, You have lupus and you're in a flare. For the most part they are usually normal. Originally what started this was the positive ANA and all my symptoms but anti-dsDNA, anti-Ro, c3, c4 etc all negative or WNL. I've always been anemic. For the most part, all the CT scans, MRI's, and tests that I've had are normal. I just don't understand.. I feel so bad but "I'm normal."
 
Mostlybode and Hannah- Thank you for letting me know I'm not crazy :) This is just so hard for me to understand and to deal with. I've been through a rollercoaster of emotions from anger to depression. I've accepted this is going to be forever but it has to get better than this. I have to be able to have a life, continue my education like I want, have children, help my patients, there's so many things I want to do and I just don't want this to ruin my plans. I'm only 25 and have a whole life ahead of me. I'm just not willing to give up that easily!
Nicole- 25, married, no children, Registered Nurse
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease
Meds- Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Nucynta prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/13/2013 4:52 PM (GMT -6)   
The photosensitivity in Lupus is triggered by any light emmiting UV rays: Halogen, Fluorescent, Compact Fluorescent bulbs, sunlight, and tanning beds.
The problem with sun lotion is it will only last a limited time. Sweating, touching it, rubbing it off, and it only allows a certain increase in amount of time able to be outside.
With a good sun hat you get a constant protect that won't come off.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 6/13/2013 7:21 PM (GMT -6)   
I know. I frequently try to reapply especially if I'm outside. I try to wear ball caps when I can but haven't found a good floppy hat yet. Still in pursuit smilewinkgrin
Nicole- 25, married, no children, Registered Nurse
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease
Meds- Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Nucynta prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/13/2013 8:15 PM (GMT -6)   
Coolibar.com has some great hats with wide brims there.
I love their bucket hat. I can fold it up and stuff it in my purse if I need.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 6/13/2013 8:31 PM (GMT -6)   
Nicole;

Just wanted to welcome you to the Lupus forum. I'm sorry that you're having a hard time with your lupus. Your black out could be from a number of things. It's hard to say, I would make sure I let my Dr know about the episode though.

As far as IV medications for Lupus, one of the common drugs is cytoxan, but they normally only use this for patients who are having kidney issues, CNS issues, and sometimes lung issues. There is also rituximab but that would be up to your Rheumy. Both of these IV medications are given for a specific period of time and then you must stop.

I've had lupus since I was 23. I've taken ALL of the medications out there to treat lupus, I've also taken medications to treat my RA too. Nothing has worked for me really, I'm in constant pain and feel terrible all the time. I understand where you are coming from and all I can say to you is keep fighting and make sure you let your Rheumy know everything that's happening with you.

It sounds like that you need to take some time off from work. Working 12 hour shifts just may be to much for your body to handle. You may not be getting enough rest and need more rest to get your lupus under control. I hope that your Dr can offer you something soon. If I can answer any questions about any of the medications out there just ask away. I've even taken Remicade and Benylsta for my RA and lupus. Good luck and keep us posted on how you are doing.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 6/14/2013 10:40 PM (GMT -6)   
Couchtater- I'll have to check it out :-)
 
Barbara- I went to the Dr and we talked all about my little episode. She still thinks its med related so another 2 weeks of only prednisone, plaquenil, and pain meds. If I have another one, then we'll investigate further (had a brain MRI that was negative). So 2 weeks of trying to deal with the pain then we're gonna figure out what to do. I've previously been on MTX pills, leflunomide, Imuran, cellcept.. so I've tried a ton of pills. When I was on MTX it helped but I was on the max dose and throwing up so she suggested maybe subq injections to bypass the GI tract. Or Benlysta or Cytoxan. Guess we'll see in 2 weeks. Also, I'm not going to be working for at least the next month. Luckily I have short term disability but I'm still really sad to miss work. I know most people would be excited to have time off but I just want to be normal! I really appreciate all your info. I'm so sorry you have to deal with pain constantly. I just don't know how you do it! I think I have a really high pain tolerance and I just can't take this anymore! You are one strong woman!
Nicole- 25, married, no children, Registered Nurse
Endometriosis, Lupus, Raynaud's, Degenerative Disc Disease
Meds- Lo Loestrin Fe daily, Plaquenil daily, Prednisone daily, Prilosec daily, Celebrex BID, Nucynta prn, Dilaudid prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble.~
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