I don't know why I am typing this at 5 something am...I am looking to vent, or for some sympathy from those who are going through similiar circumstances, or what. Maybe my story could also be a teaching tool of some sort. Today my son is taking me over an hour away to see my doc. My standard 3 month appt. just happens to be when I need to be seen the most.

I have NOT been talking about my increasingly worsening myoclonus here lately-just old info, and trying to be uplifting to all, but this week I had the-"shall we call the paramedics" types of myoclonus-two times. If I didn't rush and get to the middle of my king sized bed, I would have probably sustained a concussion and broken bones. It was THAT strong.

My poor friend was here yesterday-she is really fragile from her years of anorexia, and has cracked ribs from a big hug one of her son's gave her...she can't take much stress....and was in awful distress when she saw me at my very worst. She got me pillows, wrapped me up in a blanket in the middle of the bed....and kept giving me Klonopin until I had 4 milligrams in me and lamictil-within 10 min.

Here is what happened. I forgot to take my 3:00 meds. Linda was visiting, and we were having a great time talking on the couch. By 4- I started to have myoclonus in my arms and neck-torticollis, and told her that as soon as I have a window of opportiunity I was going to run to my bedroom for my meds. I managed to get there and take 1 mg. of Klonopin and Lamictil-myoclonus started up faster than a lightenbolt. I fell into the middle of the bed ASAP..and-

my entire body was thrashing and jumping around really quickly and with incredible strength. I had what I call the "sit up" myoclonus where my body goes from a semi-reclined position to an actual forced situp, which forces air out of my diaphram, and I make a grunting noise-so sexy.....this happens over and over while I start "posturing" inbetween-arms straight out in front of me-like a robot....in the meantime when they aren't posturing, they are flailing and shaking.

While all of this was going on, I could barely have a chance for a decent breath, so for about a half hour I barely got oxygen. When I came out of it I was hyperventilating so much-still not getting oxygen. After my body calmed down, I took long, deep breaths for as long as my body needed it, and spent the entire late afternoon and all night in bed...except for one time when I literally dragged myself to the bathroom.

My legs were not involved until paralysis set in-GREAT.
I had this powerful myoclonus for a half hour straight. During it, one time I got absence myoclonus-all loss of upper body muscles from my head to my diaphram-and fell over, unable to sit up. Once up-if I can get to a sitting position, and have someone put three pillows behind me, the myoclonus lessens, but I am so exhausted, it is difficult to maintain the position. I forget if there is positional myoclonus or not, but when I sit up I am better.

I have a suspicion why I have suddenly backslid, as I have been getting my myoclonus increasingly under control over the past two years with changes in meds and dosages. My Lamictil was cut from 6 mgs. to 3-so that I could go on the Zoloft, which threw my depression out the window! I didn't know how depressed I really was until I went on it, and had instantaneous results.

Well, the decrease in the Lamictil could be the problem, or the Zoloft itself. It does give me restless legs and feet so badly, that when I am lying down, or sitting doing nothing active-my legs swing various ways in rhythem, or I rub them together in bed...or I rock back and forth on my side.....it is really terrible, but I didn't want my doc to know, for fear he would take me off of it. My husband is away from home, working, so he has not seen the side effects-the other one is NO sex drive-I don't care about that, as he isn't home. But it feels kind of "dead".

I took a half a milligram in the early evening of Klonopin,-I started thrashing slightly again, and wanted to stop it before the engine startd up again. and then a whole one and a Lamictil at bedtime as usual.

I will let you folks know tonight, or before, how my appt. went. I am not going to take any Zoloft this am-just in case he wants me off it-I don't want to go off it.....it helps my depression-I have not shed a tear or felt sorry for myself until yesterday's episode-sorry for myself, but I didn't cry!!!!-the first time in 15 years that I had myoclonus this badly and didn't end up hysterically sobbing.

Well, that is the whole horrid story. I will write about what my dear doctor told me to do about this when I can.

today was hell day too-here is my other post from Braintalk communities...

Another day, another horror..

My son drove me to my doc's today. I had two constant hours of myoclous before he saw me-the entire ride up, and the wait time.

3 nurses had to take me to the bathroom in a wheelchair-ever try to pee in lace undies amongst a crowd? I leaned over a snuggled a bit in jest to one of my favorite nurses, and said-I never thought we would be this close....I just can't lose my sence of humor-I am REALLY trying here...

I ended up having off and on horrible myoclonus that continued from the am, and so had to stay in a wheelchair from the doc's office-with my son't belt holding me in place. My feet were numb-doc did a sensation test. He tried to get me to move my big toe-a managed a millimeter of movement-couldn't lift my legs up or all of my toes. AAAAAAAHHHHHHHHHHHHHHHHHHHHHH

Dr. Rhee had a camera phone, so when I told him more myoclonus was coming, between him and my son't help, they had a great video of me at my finest moment....

To break the awfulness of the situation, I gave him a printout of a hysterically funny forward I got. He loved it, and was chuckling. It made us all feel better.

Well, the gist of the visit was-after awhile I got sensation back in my feet, myoclonus stopped until it was time to make my co-pay...then I had to hurry up and get back in the wheelchair. I was so FURIOUS at the myoclonus-so tired of looking like a freak-don't want to make any eye contack with those who look at me with pity-I just want to scream!

Well, My Klonopin was upped to 6 milligrams a day,-in 4 doses... the Lamictal to two tabs 4 times a day with the Klonopin....for me to stay on 50 mgs. of Zoloft, and my regular dose of synthroid...hummm, let's see-only 16 pills a day to live....

-so sorry to be such a downer today...
-tomorrow will be a very sedating day...that is a LOT of Klonopin....
-hopefully it will work. I would rather be sedated than "possessed"!

Love to all-terter xoxoxoxox tomorrow is another day! Thank God!

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Get off the fricken' zoloft. There are other antidepressants, like wellbutrin, that are not SSRI's which an induce myoclonus on their own. Is there some problem with your doctors that they keep you on zoloft? Are they dunces? It's obviously making this much worse. Also wear a watch with a timer adn alarm and set it and always have your pills w/ you. Given the horrors of this problem you should never miss a dose of the meds that help it and that is your responsibility.

I do think there are reasons to be skeptical about giving SSRIs to patients who have any type of seizure activity.

Oxygenbabe, as I understand it Wellbutrin is also an SSRI, the main difference is that its designed to increase levels of dopamine as well as seratonin.

I don't think that makes it more appropriate for seizure patients - I was actually taken off Wellbutrin because doctors suspected it was contributing to seizures.

Terter, have you already tried anti-convulsant medications like Gabitril? Are you loading up on magnesium? Those two steps seem to have brought my own myoclonus under control. It can still get bad on antibiotics, but not like it was before starting Gabitril. Gabitril is not as sedating as Klonopin for me, perhaps though it wouldn't be effective for you.

Anyhow, thanks for sharing a compelling story. I hope you will be able to put this symptom in the past tense soon.

Best wishes,

Paul

Perhaps Zoloft ISN'T right for you! Can you exercise at all? I found this is the only thing that helps me make it through life.

I'm sending you a big hug. Not as big as your friend's son's hug though. I promise not to break anything.

I'm so sorry to read what you've been going through. You always seem so strong. You have given me incredible strength as I have tried to understand my own myoclonus.

Have you ever thought that maybe you need more Lyme treatment? I know the idea of more meds can just be overwhelming. I was just wondering if you thought about the possibility that you still have active Lyme, or another infection.

Ask your dr about a tri-cyclic. I take trazodone for depression. I've never taken an SSRI and hope I never have to.

Take care and keep us posted. I hope you have a better day tomorrow and thereafter!

It's about the use of Dilantin (Phenytoin)to relieve all kinds of symptoms
that are related to bioelectrical activity.
This can range from your mind
"always going," irritablity, and flash anger, to pain, headaches, and muscle
twitches.

A low dose of Dilantin (50 to 100 mg) can stabilize the body's
bioelectrical activity. A larger dose (400 mg) can prevent seizures.

You can read the reviews of the book on Amazon.com, or do a search
on the web.
I bought the book used.

Here is the original post by RecipeGirl.
http://flash.lymenet.org/ubb/Forum1/HTML/028338.html

She did a newer one, but I forgot to bookmark it.
Hope this helps.
Carol

Sorry you are feeling so poorly. I must be having sympathy pains as I've had a couple of bad days also, although you've got me beat by a long shot. Take care and keep us posted.

Ms. Myo

I was up and down all night wondering IF the Zoloft was the culprit in making my myoclonus worse. Before bed-with barely energy to spare, I DID look up things about Zoloft-I know it has been given a bad rap lately by use in children....

I DID look up a few websites, and some DID say that myoclonus could be caused by myoclonus COULD...is it making it worse?????

I LOVE ZOLOFT-it does so many fabulous things for me, but if it is the culprit and secret to my increased myoclonus, then I must get off it. I have decided to give my new med schedule a try for a few days or a week, and see what happens before I go off it.

Here is what Z does for me:-

-stops my daily crying and sobbing spells-TOTALLY

-takes away the "poor me" blues

-stops obsessive negative thought that have plagued me for years

-I am no longer suspicious that everyone is attacking me when a negative comment is made

-I can handle teen issues so much better! My kids always used to say that I always look like I am going to cry...my husband said the same thing.

-I have never felt better emotionally-NEVER

It stops some other OCD type behaviors-for example-constant, obsessive eating.-this has STOPPED!!!

I am eating healthy-aware of everything I put in my mouth, have lost the urge to binge and obsessively eat. I have lost 8 pounds-a bit less than 2 lbs . a week, without feeling hungry-even at some mealtimes-so I eat less, and healthier!

Without it I have zero control, and obsessively eat. 2 crackers, one cookie, then one more, 5 marshmallows, more and more of bad foods, and less and less of the vegetables I love.

I can eat a full and very healthy meal, and then want to eat anything I see. I am not even picky-a handful of nuts, a yogurt....this goes on and on-I have even made myself vomit, as the constant middle of the day eating makes me so very sick. this scares me as I do not want to end up a bulemic!

I start out the day prior to Zoloft-I mean when I was not on it..., with a very balanced and healthy breakfast-very conscience of poor nutrition. I start out with a healthy lunch-look for high fiber, low fat, all food groups, not too high of calories..then the binging starts for the afternoon-sometimes inturrupting my rest time/nap, at times. Then at dinnertime I am back to eating healthy again. then, if I wake up in the night-I EAT!!!! Sometimes a tastycake or something so awful nutritionally-and I am not even hungry-Just COMPELLED TO DO IT!!!

My neuro is not a movement disorder specialist. I requested Zoloft-as I was on it years ago when I was suicidal with LD and myoclonus-by the way, which started about 2 years or more after initial treatment for LD-about 10 years ago. I remembered it helped me, so I requested it. He is an LLMD (even has Igenex tubes in his office), but is treating me strictly for myoclonus. I do a lot of research for him, as he is so busy-he has an overwhelming ammount of patients and takes usually a few months to get in, or sooner, if y0u happen to be lucky. He is open to anything, and has tried many meds with me.

Dilantin makes me itch terribly, I have tried magnesium for a month-NO difference...I have tried Zonegran-gives me hallucinations, tried Keppra-some type of bad reaction-I don't remember....

The Klonopin starts to work within 15-20 min-the Lamictil supposedly takes an hour or two-I don't know or feel when it kicks in. The combo was great until the Lamictil was reduced, and I started reducing the Klonopin a tiny bit. Then the diaster started....

But-I had also been on the Z for 6 weeks prior to the horrible myoclonus episodes. So the million dollar question is-did the decrease in the anti-sezure meds cause bad myoclonic episodes, or the Zoloft? That is why I am going to try the new combo for a week. If my situation stays the same, I will know it is the Zoloft-at least that is what I think at the moment.

I may end up doing more research, and just call my doc, and get on something else. I am so afraid to-I just feel so, so, normal mentally! But...

Well, as for Lyme treatment-I don't feel at all like I have active LD. I am left with myoclonus, a bit of joint pain now and then, and some cognitive difficulties. Nothing has changed since my decade of antibiotics-oral and IV, with supplements, herbs, a low yeast diet..anti-fungals....etc.

The problem is, that I went to a lot of ducks initially, and had numerous hopitalizations...where I was undertreated. I wasted time at a psychiatrist-unnecessarily, when I could have been on abx-I got worse! He said it was NOT psychological!!!!! HE HAD LD TOO!! I also had a year of cognitive therapy-after the active Lyme symptoms were long gone.

I cannot exercise-it causes myoclonus.

-so that is my story-I am scared about the Zoloft issue...

I have to do some more investigation...I ha a near sleepless night worrying about it. Oh dear God, I hope it is not the Zoloft.

Thank you all soooo very much. It took a lot of courage for me to bear all of this to all of you. I feel sick to my stomach to tell this much-especially about the obsessive eating. It has been wonderful to stop it. Many anti-depressents do not stop OCD behaviors.

It's obvious that you need an anti-dep....but some have fewer side effects than others.

Keep us posted!

I'd wager it was the zoloft. I see what you're saying about it helping. Some other ideas are to try precursors to SSRI's, such as 5-HTP or trytophan, instead of ssri's. Might help tho probably not as much. To the other poster, no, wellbutrin is not an SSRI, but it also seems to work on norepinephrine and maybe dopamine so it might not have a calming effect like ssri's.

In addition, I'm pretty sure myoclonus is a movement disorder and not the same as a seizure, and high doses of wellbutrin are a risk for seizure, so I doubt that would be a caution.

Another thought, is to try zinc. Zinc is known to quench the kindling effect of seizures, I have no idea if it would quench the kindling effect of myoclonus but who knows.

Mine started as what they called periodic limb movement disorder at bedtime so i take mirapex then, and klonopin for restless legs.

Then when seizures started my myclonus(sp?) started in my arms mostly, now it is happening even w/o seizures and starts in the shoulders/neck and down to the arms whole top of body. Some parts of the legs.

One thing that the doctors have found - totally unrelated on their part is that i have nerve damage - and when my physical therapist holds these nerves it will cause the arms to jump the same way as with the myclonus. same with feet/lower legs.

Definitely somehow related - have you been checked for nerve damage? not sure what it would do - just letting you know what i've found out at this point, quite accidentally.

Though unfortunately I have no answers.

Last summer I started Zoloft to try and decrease depression/anxiety related to my as yet undiagnosed disease.

Within 3 days I had a huge increase in myoclonus. For example in a 2 hour time span I had 22 seizures. Needless to say I dumped the zoloft in a hurry.

It feels so wonderful to get so many helpful and thoughtful and researched responses-I am overwhelmed with gratitude.

The title of my post is a bit misleading-I want to clear that up. I HAD LD for many years and DO NOT have active LD now. My myoclonus was started WHEN I was first dignosed-one of the first extreme symptoms. I am NOT being treated for LD.

So far today, I spent 2 hours researching anti-depressants, WITH my friend and I each on the internet AND cell phones. there seems to be some good choices out there. Wellbutrin does seem to be one of the good ones for me, should I switch. High doses can cause seizures, as do all of the others...but my body is sensitive to meds, and I always start out with the smallest dosages with anything. I DO NOT HAVE SEIZURES-proven.

Well, as I mentioned before, and the postings I put up are interminably long....I cannot take Keppra, itch horribly with Depacote and Dilantin. For myoclonus, the first drugs of choice are anti-seizure drugs. Klonopin can be used as one of those, and is also used by some people for anxiety. The Lamictil I take, is also an anti-seizure drug, but can also reduce depression. It didn't work for depression!- but the combo was the best one for me.

Klonopin is a drug that can lose its effectiveness over time, and therefore doses must be increased bit by bit. I have been on it for about..hummm 2 years? I was on the lowest possible dose-actually lower than the lowest recommended dose of Lamictil to start, and then stayed there.

Part of what happened to me during my two days of hell, was, I believe in part to a recent decrease in my already low dose of Lamictil, and me cutting some of my Klonopin in half, when I should have been taking whole ones....my fault. I was doing really well-well at least managably well-better than I have had in 10 years.

So....do you know the stupid people who cut their meds that make them feel better because they are feeling better??? Well, I was one of those idiots.

On my last post, I had decided to stay on the Zoloft and my other two drugs and of course my synthroid, for a week. If the myoclonus got better, then I would know for sure that it is the Zoloft increasing the myoclonus. That made sence to me.

After talking to my 23 year old daughter-she said that she feels that I should definately call my doc on Monday, and ask his opinion, and discuss the probability that Zoloft is the evil drug in my arsonal of meds. He might take me off it right away, or want me to do the trial thing.

Another problem is that I get my period in a few days. the surge in hormonal levels always causes my myoclonus to get worse-no matter what. This is where everything gets confusing. Whether or not I am on the Zoloft, I usually get the increased myo, then, but with my increased meds-maybe I won't! but, how can I tell if it is the Z or not...this is just craziness.

I definately need an antidepressant. My therapist says so, my endocrinologist says so, and my neuro says so....and I positively KNOW SO. I fought it for months until i decided I really need to take something.- can't you all tell from my previous post? thank God I am not suicidal, or have the cognitive problems I had when I had LD-I would actually be in a mental hospital over this.

Well, I would still appreciate all the input I can get. I will post through the weekend while on all meds-OH...good news-today I only had two miniscule shoulder jerks!!!!!! Maybe this is a good omen?

I also want to say, that inbetween episodes of myoclonus-I can run down the driveway, jump, use the leaf blower, etc. I mop my floor and vacuum too. I always have a few jerks after these, and usually recover quickly. any, and I mean ANY repetitive movement causes myoclonus. I have stimulus sensitive myoclonus, startle myoclonus, absence myoclonus (lose all muscle ability, and after a huge episode which is usually only a few times a year, or a bit more, I get partial paralysis-When all that goes away, I can literally do a jumping jack. Bizzare this is...I get "posturing too, and torticollis"

I have tried zinc, magnesium, etc,-all to no avail.

Love, and with deep appreciation and gratitude to all of my "loved ones" here at my place of sanity-Lymenet-Terry xoxoxo

Gosh - my heart goes out to you. Well, you know that already due to our communicating via other forms anyway.

All I can tell you has to do with what I posed on the other site. I have read about SSRI's cauing myoclonus. Had read about that at the beginning of the week. Then, I attended a Depression & Bipolar Support Alliance education lecture on Wednesday PM. Jeffrey Apter, MD from Princeton, who is involved with lots of research advised that yes, SSRI's can cause myoclonus and/or make it worse.

So, what I can tell you from my experience with them is this. Used to take SSRI by name of Serzone or was at least very similar to SSRI. I was fine on 475 mgs but when had 500 mgs, got akathesia and very agitated. Don't remember having severe, what we believe to be myoclonus back then. Anyway, I tried Zoloft and had same results. Knowing what I know now, I won't touch an SSRI.

Believe me, I understand what you mean about controlling other emotional issues. So, I'm no doc, but can at least provide some info I know. Had intrusive thoughts way back when (still have them), and took Anafranil. Intrusive thoughts are linked to obsessive compulsive. I liked the Anafranil but it supressed my REM sleep and this was a bad thing as I was commuting to college at the time.

Lamictal is utilized as an anti-depressant as some sort. That is why I take it. Have you ever had a doc do a Lamictal level for you? You have to have the blood drawn exactly 12 hours after your last dose though. Then, there are the tricyclics, which I think Anafranil may be in that class or the MAOI's, although with MAOI's, there is a diet change thing. My doc wants me to go on something like that, but I'm waiting. I think increasing my Lamictal will help.

Oh, and then there is the most natural of meds, Lithium which is utilized for depression as well as bipolar. I was put on it for severe depression as don't have bipolar.

So, just some food for thought. Whatever you do, if you decide to go off it, don't go cold turkey.

Oh, and being that I have a awful viral head cold and sinus infection cauing intense pressure in my head, have had a few bad days myself, not nearly what you're going through.

Getting bit nervous from what I read though. Is this what we have to look forward to?

Well, hang tight as I saw through reading lots of posts that you are the wondrous angel that is there for so many others.

By the way, how was your time with Dr. Rhee? Did you say he's not a movement disorder specialist? If he's not, then what does he treat?

------------------
Reach for your own unique rainbow!

Hi-I just e-mailed u to see if you have AOL instant messenger-so we could "talk"!

-and you think I have been having a hard time....you have been through the mill!

I am going to make this short, as I am so tired...and I have posted and researched and typed myself into exhaustion today. Many hours woth, as I am alone today.

I have not heard of most of the meds you are on! I guess you know by now, I know about the Zoloft...but I still only had two minor shoulder jerks today!!!!!!! I am encouraged about this.

As I said many posts ago I think...wow, I am soooooooo not exactly with it-lots of Klonopin I think, too-I am taking Lamictil WITH Klonopin -both used for various things. The Lamictil did NOTHING for depression for me, but wonders in conjunction with the Klonopin.

Dr. Rhee upped both to see if it would stop the terrible myoclonus I had yesterday and the day before. What a miracle! I am fatigued, but not myoclonic!!!! I will see how the rest of the night goes...

Dr. Rhee is a neuro for many things, as most are. He has a special interest in myoclonus, and wants to help as many sufferers as possible.

I have been to so many movement disorder specialists that dismissed myoclonus as psychological, or psychogenic. One, wouldn't even look at ANY of my records!!!! He pronounced it psychological immediately-charged me a bundle-I had to travel to get there-waited 5 months to get in...for WHAT!!! What a waste. Each movement disorder ddoc was a duck with inflated egos. I felt like cursing them out-instead, I cried all the way home-feeling hopeless...until I found Dr. Rhee.

I would rather have a doc who is sincere, tries everything he can, calls his patients, prays for his patients, and is the Head of the board of Neurology in NJ. He IS using my case as his case study at the neuro conference-so that he can educate other doctors. Now to me, this is a doctor-not a duck.

We are working together-sure, he is human, sure, he makes some mistakes...but he is so
open, honest and caring. I did see over 30 doctors for help-and he is the best doc I have found. He is also a great Lyme doc-I sent my friend's friend to him, and he finally diagnosed her with the Igenex tubes he sent along with her to the lab. He never treated me for LD. but for myoclonus.

Maybe he is the doc for you, and maybe not-I can only offer you my recommendation and personal experiences.

Take care-we will e-mail, and "talk" here. this info right now, might help someone.

I am so much better-I feel human again.

No, this horrible myoclonus is not what you have to look forward to! This extreme case I have, started soooo many years ago-horrid from the start. With Lyme treatment, some patients even have their myoclonus totally go away...others are left with a very mild form.

I happen to be in the extreme catorgory-lucky me I think that is why I am treated with such distain and in such a demeaning manner with my horrid ER experiences I explained to you.

Quick update-NO myoclonus last evening, 2 minor twitches yesterday-less than I have had in years...NO myoclonus last night or this am.....are the meds right for me?

- time will tell-I still have the Zoloft scare in my mind, tho...but, as for the side effects of restless legs and rocking-75% gone!