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CaseyR

Medications

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I was given Dilantin and Keppra when released from the hospital. They started pretty quickly to reduce the Dilantin then the Keppra. I took my last dose May 31st 2013. My neurologist has told me more than once my fatigue/lack of stamina is the result of the meds and should improve once I'm clear of them. From reading posts on this site I get the uneasy feeling that isn't always the case. My NASAH with vasospasms and seizures began Nov 2013. I notice posts from folks years into recovery that still mention fatigue issues. Are they still medicated?

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My neurologist has told me more than once my fatigue/lack of stamina is the result of the meds and should improve once I'm clear of them.

I'm afraid to say that at nearly 8 years on, I still suffer bouts of fatigue. Not as bad/frequent as in the early years, but I still have to pace/manage myself. I'm not taking any meds now that would cause this problem. However, when I was on anti seizure meds, it was a whole lot worse.

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Hi Casey,

I'm one of the people a few years on who still suffer fatigue & headaches. I am not on medication other than for blood pressure. I have recently been told it is 'unusual' to still have this level of fatigue after nearly 5 years so don't worry yourself thinking that will happen to you.

There are many other people on here who have recovered very much more & work full time again and attend other activities too. I'm sure the drugs you were taking may have had some influence on your fatigue too so hopefully you will get a nice surprise now that you are off them. Good luck!

Michelle x

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I had a weird thing this morning. My granddaughter woke up and got out of bed to go to the bathroom. Then, it replayed in my head like a film had rewound and restarted. Really strange.

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Casey - are talking simple deja vu or did you have the wierd sensation in your head like you were having a SAH all over again?

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I haven't had any meds since I was discharged, although I am on amytrip to help me sleep & have been on it since before my op as it was the only pain relief that allowed me to sleep. The downside of amytrip is a heavy sleepy feeling on waking which I'm sure doesn't help my feelings of fatigue, I am trying to reduce the dose but its not easy. If I don't sleep well I feel awful (jet laggedish) & queasy, I've just had a week or so of feeling sick in the morning because I am soooo tired.

The fatigue does lessen off but for me it hasn't gone totally yet.

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Casey - are talking simple deja vu or did you have the wierd sensation in your head like you were having a SAH all over again?

Not like any deja vu I have ever experienced before if that's what is was. The sensation I remember most of my SAH was pain , and that wasn't present this morning. My tinnitus is worse today and I can here a phone ringing somewhere. This was just like the event had happened twice. Heck, maybe it did.

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Hi again Casey,

Without wishing to alarm you, I do believe that feelings of deja vu can be a form of seizure. It might be worth talking to your Dr about this, especially if it happens again. But, you're right, perhaps your grandaughter did get up & go to the bathroom twice. If you had just woken up yourself it can be easy to be confused or forgetful.

Michelle

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Hi again Casey,

Without wishing to alarm you, I do believe that feelings of deja vu can be a form of seizure. It might be worth talking to your Dr about this, especially if it happens again. But, you're right, perhaps your grandaughter did get up & go to the bathroom twice. If you had just woken up yourself it can be easy to be confused or forgetful.

Michelle

Thanks for the advice I may give them a call. For sure I will note anymore deja vu. Another seizure at this point would be really disappointing since I am finally off the meds and looking forward to a more normal normal. The racket in my ears is getting tiresome as well.

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Hi Casey R.

You should keep a little journal.... we all wish we did. I keep thinking I will but I seem to only record my blood pressure.

I think I have some of those episodes as well. I hear things very far away like a phone or I have mistaken a sound. It is my newsuper sonic hearing.

Maryb

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Maryb, someone else suggested a journal and I started one. The grandkids have been here this week and I haven't had (or made) an opportunity to keep it updated. Thanks for reminding me I will tend to it. I did call the neurologist about my recent symptoms and they are to get back with me. Ya'll are all so kind to offer advise and show interest in my well being. I appreciate it very much! And as a "son of the South" I love the way your accents come across in print. It is like reading poetry to me. You all seem so gentle and proper! I hope my direct way of stating things never offend any of you. If I do please correct me immediately.

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That is my new theme song.

I am glad I have extended health.

I went to see my doc last week and my BP was up. quite high, to the same levels as it was when I had my SAH.

SO now I take a pill to reduce BP a water pill to help kidney function because of meds, two slow release beta blockers to reduce my headaches, a pill for diabetes and now a pill for cholesterol.

I am sure if I lost about 70 pounds I would not need anywhere near the medication, well that and reduce my stress. :)

The thing that bothers me is they just seem to treat the symptoms and not the cause. It has been two years since SAH and the only time I saw a neuro was 5 days in when they did angiography. He just said "no bleeding, good to go"

Also the drugs all have similar side effects, drowsiness and fatigue. Oh except one, that is drowsiness and may interrupt sleep patterns and result in insomnia. Thats all we need, drowsy insomniacs. :D

Still I am alive and kicking. I cant ask for any more than that, My name isnt Oliver Twist.

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In response to the original question...I thought that once I went off the drugs, all the fatigue and dizziness would lift...but sadly the drugs weren't the cause. It took so long for it to get 90% and I long for that 10%. I'm not sure it'll ever come. I am almost 2yrs post SAH.

I get a really groggy feeling every morning and every night. Sometimes it is worse than others, but I don't sleep very well either. I can't imagine making myself even more groggy in the AMs with a sleep aid even so. Suffering :(

I hope you do experience a lift after you get off the meds though. Keeping a journal really did help me. I still do and it is crazy to look back on what I found important to write about. I highly recommend it.

~Kris

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Kris, I am back to the journal entries as ya'll have advised. Sorry your recovery is dragging and I hope that last 10% is on it's way. I'm lagging some behind you, but hopefully will keep gaining. I have an appointment with an ear, nose, throat Dr. set up by my neurologist to hopefully turn down the volume on this symphony in my ears/head. My dizziness seems exactly like vertigo w/o the nausea, so maybe something is going on with my ears. Anyone had any experience with this?

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Hi Casey,

I was referred to ENT after my SAH due to tinnitus and a whooshing sound noise in one ear.

I had a couple of hearing tests and was referred for an MRI of my head and neck to see if there was anything medically causing the tinnitus and other sounds I was getting.

There was nothing found, phew! However I would have liked, and really wanted, a reason as to why I have this annoying non-stop noise in my head. From ENT I was sent to see a tinnitus specialist. I was told by her that I would learn to live with it. Errrrr.... Really.... ???? It's been nearly 3 years since my SAH rocked my world and NO I have not learnt to live with it! It really does, at times, drive me mad.

I also get the dizzy / off balance feelings.

I hope that your ENT appointment gives you some of the answers that you're searching for.

Take care,

SarahLou Xx

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Thanks for your honesty SarahLou but that really wasn't what I wanted to hear! Although I suspected as much. I will be sure and let everyone know if they are able to help. I have heard they can utilize hearing aid devices that "cancel out" the noise. We'll see.....

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I actually thought all of my symptoms were from the medications, and as soon as I got off most of them and I was still feeling funky, it took awhile to figure out that it was more than that. It does get better, but recovering from a brain injury is just a windy road. I would also suggest journaling. I blogged and still blog. It's a way to get how I feel out onto the screen and out of my head. Often that action alone helps me clarify things.

I also have Tinnitus and unfortunately we found no reason for it. Like SaraLou I was disappointed that no one could figure that and my headaches out. I actually read a study awhile ago that showed that the level at which tinnitus impacts a person's life is not based on severity, but on how much the patient focused on it. Mine finally just feels like background noise. I have found that listening to a book at night helps me not "hear" it. Music changes tone and pacing so that wakes me up, but listening to a book helps. Usually I listen to Harry Potter for the 9000th time. If I wake up I am immediately lulled back to sleep by Jim Dale's voice. (I did try listening to World War Z the other night and let's just say that my extremely vivid nightmares took THAT one off my list! Yipes!)

You're still new to this. I guess the best thing I could say is sit back, let it happen, and try not to worry too much. Be vocal about what you need, and ask for support. Don't expect too much or too little of yourself. Emotions are typically all over the place; my PT told me that he'd never worked with a TBI patient who had not had serious bouts of crying. Don't feel bad for feeling frustrated, angry, or whatever you're feeling. Just like you wouldn't ask someone to heal faster from a broken leg, cancer, etc. don't expect that of yourself. Understand that all of that is part of the healing process. I've read that PTSD is quite common after a stroke of any kind, and while before I might have thought "Why would that be?" having lived through it, I understand.

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Thanks Teechur. Funny you should mention crying. I often see folks on this forum mention it, but I don't recall crying once during or since my event. Of course I don't recall Christmas either, so I may have! What is a TBI patient?

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Casey,

You do get used to the noise me n hubby sometimes laugh about it, he says "Are you bliming deaf" and I reply

"Yes I bleeping am" that's when I'm in a mood !!

So be of good cheer and sing your socks off xx you cannot hear the whooshing when singing and how off key you are.lol

Be Well

WinB143 x

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WinB, the noise drives me nuts, my singing would drive everyone nuts!

Penny, thanks. Can I assume it is injury due to trauma? And therefore doesn't apply to someone like me that suffered a "no known cause" bleed?

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I am still medicated! I of course have a bundle of things wrong that put me in a Catch 22. I recently started a Channel Blocker - and the higher dose has helped with my constant headaches, which left after so many months & returned. I never cry, haven’t for years and I do not know why.

My biggest issue are fatigue and noise. I cannot stand background music while people are talking on TV etc. Or at work they have the radio on, talking etc.. Too much noise. I seldom listen to radio anymore. This supersonic hearing is something else. I have volume on 9-10 and my husband has it on 20 or more. Sundays we watch a program in the same room together and I hate it!! Any sudden noises almost floor me.

I am better with sunlight I think? Or maybe it is the channel blocker and my headaches are not triggered so easily. Also my blood pressure which was normally low until 6-9 months prior to SAH, it started jumping all over the place. I may have fewer headaches as the CB has leveled my BP to normal almost every day. It is higher on my pain days.

One thing I do is watch nonstop NCIS or Criminal Intent when resting. I asked the therapist about that and he says it is normal for people with TBI - that it is comforting to see the same characters and story lines. I was feeling a bit like Rain Man but he says it is ok, the over stimulation from busy TV shows do me in, as does bickering, noisy cars. The grocery store is still a battle- boy, I cannot overcome that.

It took me a year to be able to cook when I was put on Ritalin the second day cooking came back to me. It was so amazing that it was like a switch was turned on but that was my only miraculous recovery from that drug! I need recipes now and it is hard for me to follow them. I do not take the Ritalin as prescribed. I am too tired to take it, like it is wrong to me and it feels wrong to my head and body. But about twice a week I have to take it to get through a day. But instead of 30 mg daily I take maybe 10 -20mg twice a week.

My 2 year anniversary is in Sept and I am working 30-35 hours a week, I do sleep a lot more than I would like to be but I have to or I will be a zombie. I rest so I can go to work. It is a vicious circle! I took a Ritalin today so I could get chores done because sometimes I just need to work around the house and feel like a normal woman – except for that kitchen thing!

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I am careful to take the meds specifically as prescribed. I want the doctors to have the correct information to work with and if I fool around with the meds they don't. I am 7 months into my recovery and still pretty intimidated. I have made up my mind to trust the Doctors. If the wheels come off my recovery it won't be because I didn't follow their advice. That said, I was told the fatigue would improve once I was off the keppra. I have had a hangover for two stinking weeks since I took the last dose.

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I still get the hangover feeling at times and I am almost 2year post. It was all day every day and that stopped at some point. It was so hard to describe to people and it makes it really hard to function. I hope your feeling will lift soon. Mine did it in stages and as I said, I still get it occasionally at night before bed.

My doctors told me the same thing about Kepra. I took everything as directed too. I think you are spot on for trusting them, but remember they don't live in your body either, so what they assume and what actually happens sometimes are different things. Keep you doc up to date. They wont be able to take away every symptom you have, but they can try if you want them to do so. Success for them is by a different yardstick than it is for you. You are ultimately the one who lives with and has to accept or not accept symptoms.

Hang in there, it will get better...I know this to be true.

~Kris

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