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Discussion Starter · #1 ·
Hi,
I just wanted to ask for any thoughts.
In Decemeber I suffered from Grand Mal seizures while in the hospital.
I have never had a Grand Mal before. Then I was hospitalized again 2 weeks ago again for seizures-this sime partial seizures. I am on Tegretol and a pretty low dose and it is keeping the auras and seizures at bay.
I am struggling still with migraines, but I am working on those.

My neuro does not have an explanation for what is happening and neither do any of my other drs. I guess I am frustrated because it semms like it always something and it seems like they never have a straight answer.
My eegs were normal, cat scan normal and even though I had a seizure in the mri machine- it was normal, spinal tap normal. Has anyone else gone through this?

I did not have a stroke, but I left the hospital very weak on my left side. My speech was horrible-word finding difficulties and just unable to connect several words together. I am recieving physical therapy and supposed to get speech therapy, but my speech has improved just in the 2 weeks since I have been home. Again no real explanation as to why I suffered all this.
I am currently using a walker, but I am working hard to lose it.

Any advice is appreciated:)

By the way-I sure did miss you all:grhug:



Hugs,
Becca
 

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(((((Becca)))))

How very frustrating for you..I am sorry your neuro has no explanation for you.I think it's worse when you have no understanding of why it's happened :worried:

I'm sorry I cant offer you any advice becca :sad: I did have a one-off seizure years ago which there was no explanation for & my tests were all fine but it wasn't as serious as yours at all & I didn't have your additional problems.

so I just want to send you a big hug becca :hug: and I hope you get the answers you need.
I hope you never experience it again,fingers crossed for you.
take care..karen x
 

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YAY! Becca's back! :yahoo: :excited: :wiggle: :dancing:

I know this has been a really frightening experience for you and I truly hope the new anti-seizure meds work.

I can't offer any advice except to say I'm here for you and I really did miss ya! :hug:

Lots'a'luv,:love:

Pam xxx
 

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Becca

I sorry to hear that you have been having such a hard time. The scans coming back normal is just weird!! Times like these I wish we all had Dr House!! On a Serious note though; migraines are hard enough to cope with let alone the siezures and aura's that go with it.

I was hospitalised about 18 months ago with weakness and dull ache/ numbness down left side with muscle tremors, migraine, intolerance to light and bp at times 160/120. (This was all before the Lupus diagnosis and also I had the similar problems in post natal ward 6 years ago)
I was admitted due to a suspected stroke but after 3 days of hospital, MRI & and CT scan to were both clear and put on beta blockers for migraine and bp, I was diagnoised with Migraine with Aura. I still am affected by everything more on my left side but something Ive gotten used to it.
Now I have the black outs SUCKS!! So I understand where your coming from.

What does it feel like when you come out of the siezure Bec? Its good that someone was able to witness a siezure, do you think the MRI machine brought it on?

Please let us know what happens Bec, I hope you are taking care of yourself and resting. :)

Take care and big (((((Hugs))))))

Shell
 

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Auras and Migraines

I also get auras just before a migraine headache. I started this about 2 years ago. Are the Aura's considered a seizure? I haven't seen a neurologist but am wondering if I should. It has happened once while driving and really scared me. Is this also a Lupus symptom?

Thanks!
Michelle
 

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Discussion Starter · #6 ·
Thank you for all your sweet replies.
Karen-thank you for your kind words and hugs(need those):grhug:
Pam-I am happy to be back on the board and you know how much I missed you all. Thank you for being there my very dear friend.:hug:
Shell-wow that all is scary similar and I think you need to be seen for those blackouts. I have a horrendous headache and I am exhausted when I come out of a seizure. I have drs. witness my Grand Mals and then the partials too. With the Grand Mals-I did pass out. The partials- I did not pass out on. However, with both seizures I get the horrendous headache and am completely wiped out.;) Good Luck with your black outs and let us know what you find out.:love2:
Michelle-Thank you also for your reply. I think you need to see a neurologist about the auras. I had auras prior to the full blown seizures, but I am under the impression they go together, but I could be mistaken.
You may want to google seizures and read up on them. I will warn you, I think it is all very confusing:hehe: Keep on top of it though. Very nice to meet you.:flower2:

I have a rheumy appt tomorrow, so I will let you know what she says.

I don't know what I do without you all-:grouphug2: THANKS!!!



Love,
Becca
 

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Discussion Starter · #7 ·
Well I had my rheumy appt. which was basically worthless. She is going on maternaty leave and therefor I will be back to see my old rheumy which I think is best-she really has been of no help the few times I saw her.:(

Once we figure out my tummy issues she wants me on metho(inj.) which is great, but how long will it take to figure out my tummy issues????
I have already been at this for months.
I was given Reglan only to be removed from it when I was in the hospital, because it can cause seizures(I had my seizures prior to being on the med), but they couldn't take the chance and I do understand that.
I guess I am eager to start the metho because of the results I got last time from it. Now though it will be at least a month or two.

I am still frusrated:worried:

Thanks again for letting me vent.


Hugs,
Becca
p.s. I am having a very bad couple of weeks.:sad:
 

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Jen
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Becca, as you know I have very similar issues to you. I wish someone could figure out the cause. I do think we all need to get together and find a Dr. House!!!

Take care, Jen
 

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Becca,

I'm sorry that you are going through so much right now. I am glad that you will be back with your old rheumy. I have come to the conclusion there is so much they simply don't know about the human body despite all the research they have done. I still have no answers on my edema which is not nearly as serious but my doctors have no answers. I wonder if your seizures could be caused by Dysautonomia? That is what causes my periodic breathing problems, my periodic bladder issues and likely the cause of my gastroparesis.

As far as your stomach issues go. I couldn't tolerate Reglan it gave me insomnia and the most horrid taste in my mouth. I have 2 medications that I have taken for my gastroparesis one is Zelnorm and the other is Domperidone. At the moment as long as the Domperidone is working we are not pursuing the Zelnorm. Zelnorm is available again but on restricted prescriptions. My GI doctor says we will go the IBS route to get it approved if I need it. The Domperidone comes from Canada and is a Gastroparesis drug that will never be available in the USA because it is now a generic. My doctor here writes the prescription and then I mail it to the Canadian pharmacy it isn't extremely expensive.

Glad to have you back.

Take care,
Karen
 

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Dear Becca

Im afraid I am of no help with regard to your medication issues but I just wanted to stop by and tell you that I am thinking of you and wishing for this wretched period in your health to pass as quicky as possible :hugbetter: :hugbetter:

You have been having a horrible time lately and I often think of you. You have amazing internal strengths Becca and a big heart. You are so often here for many members who are going through a rough time.

Im glad we can be here for you when its your turn

Many many hugs

((((((((((((((((((((Becca))))))))))))))))))))

Luv n stuff
Joan:rose:
 

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((((((((((((Becca)))))))))))))

:( :hug: I'm sorry things are still not sorted with you and you continue to feel so bad. I hope they can darn well hurry up and get the tummy problems sorted so you can start the metho asap. Hopefully that's going to help some.

One thing I was wondering is if you were still on 600mg Plaquenil and have they thought any of that was possibly contributing to your seizure episodes? I know you have had much more going on that indicates a deeper problem than just that, but is it possible it's not helping? It can cause seizure activity in some people. Forgive me if I am way off the mark here, it was just a thought...........and yes I know.......... that lately that's dangerous for me :wink2:

love
Lily
 

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Discussion Starter · #12 ·
Hey Guys,
Thanks again for everything. I really don't know what I would do without you all.

Jenkay-we do need a nice Dr. House:) I hope your doing well.
Karen- Thank you for the info on the tummy meds. I have been on zelnorm before, but it was eons ago and I have not heard of the other med. I will look into Dysautonomia. Seeing how I have bladder issues, gastroparesis and overall rough time.:hug:
Joan-Thank you for your support and kind words-you have no idea how much that means to me.:love:

Lily-Yes, I can't wait for the metho and the better quality of life it brings.
I am down to 400mg of Plaq a day. It is funny though the drs took away other meds one being my soma-and boy I have I been sore. I guess the olny dr that is wanted to rx'd any meds is the neuro due to all the complexity of this. Thank you for your valued advice.:posy:


I ended up in the er Friday am because I had 3 more seizures. They sent me home with Ativan .05mg every 8 hrs and it has helped with my headaches too. So, I have been ha and seizure free for the weekend-yea!!!

I call the neuro tomorrow to go over my meds and see what all we can do.

I will keep you posted.

All MY Love,
Becca
 

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:hugbetter: Becca

I am so sorry to hear about your recent seizures :sad: how worrying for you :worried:
I'm glad the avitan has helped though....good luck with your neuro.

I hope you can get things sorted out when you see your old rheumy.
you are very strong coping with everything becca I hope you will get a big break from it all soon!

sending you lot's of love,strength & healing hug's :hug:
take good care..karen x
 

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(((((Becca)))))
Hugs for you. Seizures are a scary thing and I'm so sorry you're having this tough time. Hoping the meds start working for you soon...

Hang in there! Love, Pollyanna :love2:
 

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Jen
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It is interesting what was mentioned about the plaqunil by Lily. I've always thought there was a connection between plaqunil and my migraine/seizures. Last year I went down to 200 mg and was better shortly after but then things got bad again this winter and I was still on 200.

They just put me back up to 400 a couple of weeks ago so we'll see how it goes. It probably isn't the plaqunil, it is just all in my head!!! :rotfl:

Glad you had a good weekend, I did too, now working on recovering from it. :hehe:

Jen
 

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Becca,

Soma can interact with some medications used for treating seizures in addition to some anti-depressants. I have no problem with my effexor and soma but I seem to remember there is a chance of seizures with that combination. A quick check of the other muscle relaxers and they all have warnings about seizures.

Is the Ativan helping with your overall pain issues? If not please call the neuro and let him know that the soma was removed from your list of medications and that you need something for pain relief.

hugs,
Karen
 

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((((((Becca)))))),

This last 6 months has been such a truamatic time for you hun. You've had more than your fair share of health issues. :(

I really feel for you and it's frustrating that the docs can't find the cause. :sad: I hope the neuro can help you tomorrow.

I'm sending you a huge cyber package of my homemade baileys ice cream to cheer you up! You have to get well so we can go tear up the town and drink cocktails. :dancing: We still have to agree on your pad or mine - there's only around 5161 miles (8306 km) of a difference. :lol:

Lots'a'luv, :hug:

Pam xxx
 

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Hi Becca,

How did you get on with the Neuro call today?

I'm sorry you ended up back in ER with 3 more seizures :sad: enough is enough already :mad:

sending hugs,

love
Lily
 

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Discussion Starter · #19 ·
My neuro was out and will be in tomorrow. I appreciate you guys so very much.


The party is at my pad:eleph: I have a guest room and office. We could have soooooo much fun!!!!!!!! My house is always opens to you my friends.
Pam-with bringing Bailey's ice cream-you don't need to ask just pop on over. I live in a wine valley:stretch: So just come on over!!!!
Karen-I hope he can find a muscle relaxant for me. I did like my soma.
You also know you are invited over at anytime:)
Karen w.- Thank you for always being such an encouragement. Ihope I can be an encouragement to you.
Lily- Thank you for your knowledge and support. Thank you for caring.
Again anytime you all want to visit-I am here with arms open wide.
My hubby would be thrilled to meet fellow loopies.:lol:


Love,
Becca your friend
 
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