Is it Meds or FND???

[cgarff]

My ultimate question today is: Is my increase in issues due to new meds or just FND changing yet again for the millionth time? I am so frustrated with this whole FND crap, it isn't funny any more! Jokes over I want my life back! AAAAHHH! . Sorry, I know you all understand my frustrations, as you all go through your own Hell with this.

In the last month since I found out I was having non and epileptic seizures along with all the movements, my Neuro put me on Keppra. Unfortunately, it is hard to tell if it is helping with the seizures, when I don't know which ones are epileptic and which ones are not. On the other end of the medication, are the warnings of possible side effects. The meds have not only kicked my butt tired wise in the afternoon, but has made me more irritable, depressed, trouble sleeping here and there at night, weakness (so much harder to move after seizing, walking, moving etc.. and those are the ones listed in the warnings. The ones not listed in the warnings are: More movements in my arms (more shaking), worse walking (curling of feet/toes and legs more, more seizure activity, and vocally I struggle any ways, but Oh my crap.. my talking has been really messed up in the last month. I struggle with my voice going hoarse and articulation of words, or getting words out due to spasms in the neck and jaw, but this is getting ridiculous. I still bounce between the two, but my words are more slurred, I struggle even more to talk most days now, and mentally trying to think of how or what to say, and to try and get those words out sucks, and is going to drive me mad! I either have to keep a pad of paper with me to write things down, or never say anything, because the shaking in my hand makes writing hard sometimes. And lately, mentally, I feel like I am losing it, and I don't even want to say this, but some days I just wish it could be over. I'm just not sure how much more I can take some days. But then another day comes, and I might be able to do more, and some days I can't. I hate living from min. to min. never knowing what is going to happen.

Even this has taken me so long to write because I am struggling to formulate my thoughts. AAAAHHHHHH! This whole thing is just mentally and physically draining isn't it?

Oh, and the newest symptoms to join the family of my FND crap started last Sunday. So I have struggled for months with on and off facial spasms, and have always had the little spasms here and there by the eyes when I am tired.. no biggie. But rapid blinking has started, recently, and now with the rapid blinking are spasms in my eyeballs themselves. Last Sunday while waking up with seizing, I was laying in my bed trying to wake up, when my eyes started to blink, and my eyes started flipping from side to side, and back in my head. Very annoying when you can't focus on anything around you because you look to the left, then the right, then way up, then left and right again.. and on and on for about an hour. And along with the eyes and the face, are the tongue jutting out, or clicking like I am a noisy eater, but not eating anything.

And my seizing is getting creative in places to start.. They aren't just in bed, but standing up, sitting at the kitchen table, at my kids school, church, in the temple, in the car and my personal new favorites not to embarrass myself, but they make the top two.. are on the toilet, and today while taking a bath. My poor family. I feel so bad when I screw everything up, with all this crap.

I told my Neuro what is going on with these new meds, and she said for the next two weeks to slowly start getting off of them, so we can try something new. Thank goodness.

So again, my question is.. since I started taking these new meds, my life has been turned upside down even more, (sorry to complain, but I know you all understand) but is this due to the meds or just more changes to the FND? I pray that it is the meds, and things will calm down a bit once I stop them, but what if they don't? What if the shaking, the walking, talking, thinking and moving issues continue to get worse? I am just so done!

I am so sorry for those of you who are so much worse off than me. I feel some of your pain, and pray that I won't continue to get worse on both ends.

Thanks for listening to me whine about this crap. I just had to get it off my chest somehow, and how better to those who understand my fight. May they find something soon to help us all I pray. We don't deserve this.

On the positive side, even though it was a huge struggle, yesterday my middle daughter graduated from High School. So proud of her. She is so awesome, and I am so proud of her. She is such an amazing young woman and I am proud to be her mom.

best of luck to you all.

Cheryl

[nurmihusa]

Sounds like side effects to me. I read up on them...

What are the possible side effects of levetiracetam (Keppra, Keppra XR)?

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat.

Report any new or worsening symptoms to your doctor, such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, irritable, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

Call your doctor at once if you have a serious side effect such as:

hallucinations, unusual thoughts or behavior;

bruising, severe tingling,...

[cgarff in reply to nurmihusa]

Nurmihusa, Ya, I have had quite a few of these worsening symptoms, mood changes, depression, anxiety, agitated, irritable, thoughts.. this medication sucks that is for sure. My doctor is slowly taking me off of it, because stopping quickly can cause even more issues. and I certainly don't need that.

[nurmihusa in reply to cgarff]

"Side" effects. Grrr! They ain't on the side, if you're the one experiencing them, eh?

I always always always check out what the potential side effects of a new med are. Doctors don't. Both of my parents suffered from serious "side" effects from drugs they were given so I learned from a young age to be mightily suspicious of meds.

[cgarff in reply to nurmihusa]

There are times though that I don't want to look at them. I know it sounds stupid, but I don't want to know them at first because I don't want to be mentally influenced by them, or psych myself out with them. I know that might sound stupid, but if you know you can get them, then I think sometimes it can make you think about it more. I don't know. just a stupid thought.

I have another medication that I am one currently. I was able to do 200 mg, 400 and 600 mg without problems, but going to 800 mg where my doc wanted me at caused me to have bad problems. I found myself dropping in the shower one day because my muscles couldn't hold me up, and as I sat there, the thoughts came in my mind to hurt myself. I myself didn't want to do that, but as I pictured it in my mind, it was like the old cartoon characters of the angel on one side of the shoulder, and the devil on the other. They were fighting back and forth as to " do it, no don't do it" kind of thing, and the "do it" won! What the heck? I started jerking in my arm and ended up pounding my fist into the tile wall several times, and then my head. And I couldn't stop it. Finally my daughter heard me and came to help me out. Scared the Hell out of me. I immediately contacted my doc, and dropped back down to the amount that didn't do that to me. I read the side effects and the medication said it could cause suicidal thoughts, or thoughts of hurting yourself. Lovely huh?

I am still on the lower dose with out the side effects thank goodness.

Ya, never know what these medications will do. some good, some bad, and some really bad.

[nurmihusa in reply to cgarff]

Long before the internet, I used to track side effects for my dad. I'd read the paperwork that would come with the med so I'd know what to look out for. And then he couldn't be accused of psyching himself out as you say.

Thanks to my years of experience with this sort of thing I'm pretty good at recognizing and testing for a side effect. I trust me far more than I trust them these days.

I had horrible side effects from SSRIs - tried four or five - before I put my foot down and refused to take any more. No good effects, just nasty "side" effects. I know now that I don't have and never have had seratonin problems which is why they were such a failure. Dopamine and, I now believe GABA, are my problems.

I'm working with supplements that don't have many side effects and I do much better.

[Hidden in reply to nurmihusa]

Nurmi / Cheryl.

Only thing I read with meds is the pharmacological section. If that section says that the mechanism of action is unknown then I start taking it because I have a disease diagnosis that is unknown. That fits for me. Most drugs that work for me do so because they are prescribed for off label use. I know. I am weird...

Out on thin ice here now. I admire folks who can ascertain benefits tied directly to a supplement. I have not been able to do that. I wish I were that way but I am not.

Best to you both. Tired now.

Dan

[Hidden]

Poor you. How you are coping despite such difficulties is beyond me and very very brave. Have you by the way had any genetic testing for your condition? Some of the symptoms you mention are indicative of some form of ataxia, possibly episodic. That would be confirmed by genetic testing though possibly other tests as well. Best wishes.

[cgarff in reply to Hidden]

Hi Gypsi, I don't believe I have had any genetic testing. There are so many things that doctors have not done that I question why. I will have to ask her when I see her next month if that is something we can look at. In March I asked her about all the seizure episodes I was having. I had done several MRI's and EEG's, but everything said it was all good. However when I asked the question of.. All of these tests have been done during working hours, and the majority of the seizure activity I have is during the night.. Until this medication that is.. but that got her thinking, and she asked if I had ever done an ambulatory EEG which is during the day and night for several days. In doing that, we found out that I am having both non and epileptic seizures.

So ya, I think it is worth asking about. Thank you for the idea.

[cathys20]

KEPPRA is an horrible medicine for anyone with any movement disorder. I have Keppra listed under my allergies...I was first given this medication when I was put under sedation. When I was in recovery my body began shaking and moving all over the place for so long and yes when finally coming out I ached and ached for ever. I did not know they gave me this medicine, I had never had it before. Two months later I again was having yet another endoscopy and they again gave me this crazy drug Keppra, and this time was even worse. Please for your sake stop this medicine. i know we don't all react the same, but from what you are saying I would bet it is the keppra. If you aren't on Neurontin, or Primidone, Tegretol, or some other anti-seizure drug I would ask them to try this, but certainly not a drug that can cause additional movements, that just seems like a no brainer. Best of luck, this is my two cents from someone who's tried it. Blessing to you, Cathy

[cgarff in reply to cathys20]

Cathys20, Yes, I think this will be added to the other medication that I can't do, "clonidine" I was taking that medication when all of the movements started to happen. I had been dealing with voice loss for about 2 years when one of the psychiatrists *a complete idiot".. had me try to see if it would help relax the muscles. A few days into it, I had my first movements that started this horrible journey. Personally I would much rather deal with the voice loss than all of this movement crap.

I am not on any of those meds. Something to ask her about as well. She tried to put me on something else, but the price for it was outrageous. I think for 30-90 days of pills (not sure of amount) it was going to be around $1400 dollars. I just cried when I saw the amount. What a joke huh?

I appreciate the two cents really! That is why I threw this out there to get advice from you all because we are going through it, and we learn from what works and what doesn't. The docs have not, and it is just an educated guess. Thank you!!!

[nurmihusa in reply to cgarff]

One of my manifestations has been chronic laryngitis. Years ago when I was earning my living as a voiceover guy, it plagued me. Went through all kinds of tests. Came up empty. Then I discovered a connection between stress and losing my voice. Now I look back and realize it was FND - HELLO?! - just like the IBS i suffered from for years with no explanations.

[cgarff in reply to nurmihusa]

It's no fun is it. The longest I have had my normal voice in the last 8 1/2 years is 6 months. It's been a pain the rest of the time. Oh well, I can just hope for better days,

[Hidden]

Cheryl.

Never a moment more proud than to watch our kids reach their milestones. Congratulations. Knowing you as a friend, I am sure that your daughters are all up and coming stars in the world just by having you as their mom.

It was difficult to read your struggles with Keppra and then to read what Cathy went through with this same drug. Getting off that drug would seem to be a priority.

I was put on keppra years ago as docs wanted me off of sodium valproate (valproic acid) as that is dangerous over long term. Interestingly, that drug suppressed the abnormal movements with great efficacy.

So, I changed to keppra and require 2000mg daily for symptom maintenance control. Fortunately, I have no side effects as what you and Cathy experienced and i have good suppression outcome. It is different for everybody I guess...

I did try to wean myself off of that drug last year and failed. The complex problems that arose during the phase out set me way back. I had no idea. Took weeks of full dosage to return to stability. Damage was done.

My own experience with whatever disease I have is that it not only evolves over time but becomes more complex and insidious. My body has now broken down from what it has attempted to fight off. I pray that is just me and that yours and Cathy's condition will improve.

My best love to you, Matt and the girls. I know the struggle is hard but you have so much to live for and are much needed by everyone. Prayers for you and Cathy.

Dan / Seattle

[cgarff in reply to Hidden]

Thanks my friend. Graduation was awesome. Thankfully the words that were said in the program gave me a kick in the butt and pulled me out of my anxiety and depression for a while. Would you believe that most of the talks centered around Dr. Seuss and his book "oh the places you'll go?" It was so cool. It didn't stop the movements, but gave me the peace in my heart that I truly needed. So grateful for that.

I am getting off the medication. Fortunately I have only been on it for a month, so not too long. She is having me drop the amount in half for a week, then half of that for another week. By then she will have me start something else. I was up to 2000 mg as well. I just hope that what I am going through will calm down. My whole family as well as myself have noticed a huge change since starting it, but I just question all of it due to the meds because I take something that works for a while, then my body seems to get used to it, and it doesn't work the same. Drives me nuts. I have had several that have done that. I currently take one that if I didn't take it, or missed my dosage, I could really see a difference. I would start having problems pretty quickly. Now I am not sure if it is working the same with me, which makes me mad. It is the mix of the two medications or am I getting immune to it? I guess we will have to wait and see.

Thanks all so much for caring. Hugs to you all and your families! I do appreciate it.

Cheryl

[Kosh1689]

It is hard to know without being a doctor or medically trained. It may be both but it sounds like the new medication is affecting you greatly. I was put on a strong anti seizure medication and I was very tired most of the time.

[cgarff in reply to Kosh1689]

it sucks doesn't it? I can't believe how much it makes you tired. It not only made me fall asleep during the afternoon, but after having bad episodes, it would take everything out of me that I had, and I had no strength to do anything like move. It has been horrible. Don't like this one bit.

[Kosh1689 in reply to cgarff]

It does suck!

[Hidden]

Cheryl.

The trial and error part of this disease is what drove me crazy. It has been a moving target for all these years. I will say this: the involuntary complex movements and the high pain levels over the years have been the most difficult. The now permanent damage to nerves and organs I can cope with because they are known disabilities that I can work around. But the wild limb, torso and head movements still send me reeling into oblivion.

I confirm what is said by others. Put this all together and we are bound to be tired all of the time.

Sending out all the caring and compassionate love for my friends that I can muster. Seattle continues to fight.

Dan

[cgarff in reply to Hidden]

Trial and error end is no fun, I truly agree. Lets try this.. oh that didn't work, ok, now you have to work off of it, yet still deal with the horrible side effects.. Then lets try this one.. nope, that didn't work, or I don't feel a difference, what is this one for? So many crazy things.

I think what drives me nuts the most besides not being able to control the movements is the voice. I am so jealous of those that can talk normally. The only time I can do that is when my voice is hoarse. I love those times, but then again it sucks because people struggle to hear me. Either way I have to repeat myself, and I hate that. Especially when it took all I had to say it the first time. These meds have made it even worse for me in talking in the last month, and my speech therapists are at a total loss on this one because they have never experienced this. I have the muscle tension dysphonia, which we thought I had figured it out, and was able to get 6 months without issues, then issues, then got to about 5 months, then issues, and then the muscle jerking set in, and the tricks I used to be able to do, don't work any more. So frustrating!

keep praying answers will come.

Hugs your way

Cheryl

[Hidden]

I'm not a big believer in coincidences. If your side effects started at the same time you started the meds then I'd go with stopping the meds.it is stressful because you do doubt - is it me or the meds but logically if you didn't feel like that before then it's the meds.

I hope you find a better one for your symptoms.

I was on pregabalin for 6 months but stopping it was the worst thing ever. I seem to get the worst side effects to every drug out there.