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Discussion Starter · #1 ·
Last week I found out I was having complex partial seizures.. Started a new medicine on top of the many I am already taking. This morning I got my kids off to school.. Last week I kept very busy.. The thought of slowing down brought on tears.. So I kept moving on through out the week. This morning I walked in from getting the kids on the bus and looked around.. My home is beautiful I thought.. Nothing left to clean.. I even painted the walls. . I sat down and my body began throbbing.. Or maybe it had been all week but I was too busy to notice.. Oh well. I looked at the clock and realized it was time for my seizure pill.. Only today starts a whole pill instead of half.. I am making my way from 500mg to 1000mg a day.. I get my pill and a glass of water and I sit on my porch.. I looked at that pill for what feels like forever.. And I swallowed it.. Feeling numb inside. In another hour I take my Plaquenil.. Then at noon I take my steroids.. Then at three I take my Atenolol and then at eight I take another Keppra.. It hit me hard.. All that I was running from and so I sat on my very clean floor and cried… I sobbed for like 20 minutes.. Took a few deep breathes and said “F this ****” … got up.. Got dizzy and sat right back down but this time no tears.. More like anger.. Regret, fear, sadness, laughter.. Am I having an nervous brake down? Is this manic emotion side effects? Am I in self pity or is it righteous anger.. Do I sit and cry or do I get up and push on.. Because after all everyone around expects me to move on.. Because that is what I do… I muster strength when I do not think I have it and I show the world I am woman hear me roar.. Yes I realize that I am having “one of those mornings” and so I hope you guys have a better morning then me.. : ) and right now at the end of my ranting and mindless chatter I realize that even though I feel like I am loosing grip, I am probably more sane than the average Joe and that not only will this pass, but when it does I am still OK : )
 

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hi jen, you will get there, it all takes time, as you said you are bulding up your keppra, when i first started keppa for my cps, i was like knocked out for 6, and the more you up it till uoy get use to it you will feel out of it, like you i sit hewre like many others popping loads of pills one after another in morning then again at night, its never ending

but the keppra can also have its side effects, when i first started i was always down and crying, could have bite someones head off, and of course on top of all that your coping with the feeling of the sle as well as the seziures, i know ,it will settle down hun,


sending you (((((((((((((((((((((hugs)))))))))))))))))))Lin xxxxxxx
 

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Hi Jen :hug:

Please let me reassure you - if you didn't have one of those mornings from time to time we'd be worrying about you.

We have all been there and yes, sometimes you need to cry and get angry and that somehow helps you to move on to the next stage, find the resolve to change things (if that's needed) and just move forwards.

I am wondering why you take all those pills separately? Did the doc say to do that and why you take pred in the middle of the day - generally it should be taken before 9AM to tie in with the bodies natural cortisone production.
I take my pills all together - morning and dinner time (I now have one at lunch too) and that makes it a lot less of a "pill" day.

more hugs :grhug: and be reassured, you are normal and tomorrow is another day and you'll maybe not feel wonderful but you'll be a step further forward.

Katharine
 

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Discussion Starter · #4 ·
Thank you.. you guys are like my "happy pill" for the day or atleast my "support pill" LOL
I was told to take the Keppra seperatly.. at 8:30am and at 8:30pm.. .. I realized that taking the two plaquenil pills together in the morning cause less issues on my stomach.. I started in the afternoon but would get loose stools.. I take it in the morning and I am regular through out the day.. I have to take the Prednisone with food and a good amount at that or it causes nausia and vomiting and since it can cause insomnia I figure lunch is better then dinner.. I take the beta blockers before dinner.. and then I take the Keppra again at night... I probably could switch up the meds but figure why mess with something if its working.. although when you say the steroids are usually taken in the morning and why, I am now questioning if I should switch things up a little... ?? I am feeling the change from 500 to 1000mg... Right now I am off to take a hot bath.. totally need to just relax.. ya know. :blush:
 

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((( Jenna ))) I think we have had all had one of those mornings. Sometimes we just need to release our emotions. It can get too much sometimes, keeping cheerful all the time when we feel like rubbish. Being strong is very hard at times. It is only natural to go through periods of grieving and readjustment especially when lupus throws yet another symptom at us.

You are doing so well and you will get there. Let us know how you are doing.

Take care

Deb x
 

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Hi Jen :)

Yes, I do understand the food with pred thing, always best. I have had to "learn" to eat a proper breakfast or I get heartburn. Porridge is excellent for lining the stomach :lol: but I think it's a taste if not acquired in childhood is not much liked. I make my porridge with soya milk as I found that ordinary milk wasn't helping digestion at all.

Anyway, whatever works for you :hug:

Katharine
 

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Discussion Starter · #7 ·
Thanks.. all of you. I just got out of a well needed hot bath.. have to run and get my son off the bus BUT I wanted to stop back in just to say thanks.. its nice knowing there is hope and support :hehe:
 

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Discussion Starter · #9 ·
Thanks.. I am now up to the 100mg and that is when the extreme fatigue and weakness hit.. this afternoon just about knocked my butt out. I called the pharmacy and they said its normal to have that happen when you up the dose.. should be a few days until my body adjust. I can notice a difference though.. my seizures are a few times a day but I have not had one since the other day so I believe its helping me ...
 

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If you do not mind me asking, do you remember having a seizure when it happens? I always thought that there is no recollection of them after they occur.

Keppra can make you tired but give yourself time to adjust to the increased dosage. Take good care of yourself.:wink2::wink2::wink2:
 

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(((Jenna))))

We all have those kind of mornings. I think it helps release the stress, emotions that we keep bottle up so well. It is good for us to get it all out so to speak.

Did you get a stomach protector along with getting the pred?

Take care of yourself.
Love,
Lyn
 

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I too take Keppra, ands was never told to take it on its own, even when they put me on it whilst i was in hospital it was given to me with all the others i wont list to many lol!!

the keppra can make you go to the loo, loose stools, or the oppisit, once your keppra is upped to where you are the fatigue bit will go, well from the keprra anyway, mine as not gone from the sle, im now taking 1000m at morning and 1,250m night time, but mine can be upped neuro said if they start to get worse.

so what im trying to say is it will get better hun, as for all your other meds ,mine get thrown in all together, well not all in at once buit till they all gone with large glass of water.

hope that helps, i also have CPS to xxxxx
 

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Discussion Starter · #13 ·
Thanks.. well I was not sure what was going on with me at first.. I would go for walks and drive and have parts of my day where I could not recall certain things.. like how to pick up my hsuband from work.. the path that I once drove every day now would cause anxiety as I woudl pull over becaused I could not for the life of me remember how to get from poitn a to point b.
Then I walked in front of a car with out remembering.. I remembered being at the corner.. I remember feeling sleepy and anxious and before I realized it, I was across the street and someone was yelling at me.. I looked back and sure enough I had crossed with out knowing. My neighbor said I was outside sweeping.. they called my name several times only for me to continue staring down sweeping with out moving.. with in two minutes I came to looked over and waved. I do remember waving and talking with them and I also remember taking my broom outside.. I do not remember them calling me or sweeping that section.. I can tell you that while driving I would feel almost tranz like behind the wheel.. feeling like I was about to sleep.. I would pull over and wait for that feeling to pass.. and once it did I would have energy and go home.. I was told that those are all partial complex seizures.. since I have been on my meds my husband said he wittnessed me "blank stares" once.. and I think I have been doing better... its a little nerve wracking to hear about a time you did something but do not remember it.. I took my other dose last night and fell right to sleep.. so atleast it counters the sleepless nights I have had.. maybe they can balance one another out! I have an SSI phone interview in 20 minutes.. I am nervous.. since I forget things and do not want to sound stupid over the phone.. wish me luck. I have to start my meds in ten minutes.. it will become second nature to me soon, right: )
i see the endocrine doc next week for my thyroid.. probably have to start another med.. I sure hope not though.
 

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Hope The Phone Interivew Went Ok, Yes I Know Where Your Comming From To With The Blank Stares, And Not Remembering All Thats Gone On, I Hope Your Not Driving????????????????? Anymore, Its All Scarey I Know As You Feel So Alone, I Did And Do,

Good Luck Lin Xxxxxxxxxxxxx
 

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I've done the crying too! I call mine "Pity Parties". Sometimes I invite people over to my pity party and sometimes I just have them on my own. It does help to cry sometimes but i try not to make it a habit. I've even gotten so fed up that i went on a PILL STRIKE a couple of times! YUP! I said "I'm fed up with all these pills...i'm not taking another pill...that's it..I"m done!" Of course, that only lasted for about a week once everything starting falling apart again! I do have my days that i just want to give up but like you said...everyone expects you to do it because you are so strong!
Just hang in there. Tomorrow is just around the corner and you can try again and again and again.
As for the SSI, I wrote everything down and actually had a great interview but still felt that i left something out. You also have an opprotunity to send documents in to the office and that's when you get another chance to show medical proof of your disability. It took only 2 months for my approval. Thank you God! Well, you hang in there! Lot's of hugs from meeeeee!!!:bigsmile:
 

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Discussion Starter · #17 ·
Hello... thank you all for such amazing support... I am grateful and so blessed. . to have such an "extended" family such as you all..
My SSI phone interview went very well.. I had a guy this time.. he was very kind and supportive.. and said he understood and felt that I articulated my experiences very well. He said I do not qualify for SSDI but that I could qualify for SSI... so we shall see what happens over the next few months.. I said my prayers that I am on of the few who get the approval right away.. I have not been driving. I did attempt to drive the other day I almost pulled out into on coming traffic.. so I put the keys aside and said my good byes for the time being. I thought about inviting some friends over for a girls night.. some good food.. a movie.. just something to make me feel more myself again.. I just may do it.. ya know. Anyways I am off to take my next pill.. I have days I want to flush them down the drain but I won't because I know regret will knock on my door..
 

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I am glad that your phone interview went well. I hope it is processed quickly and successfully for you. It is hard when we have to stop driving, hopefully it will only be temporary. Do have a girls night, I find them to be a real tonic, I am having one tomorrow night!! :lol: Have a fun weekend.

Deb x
 
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