Giulietta

[Altostrata]

I would never ask a doctor if he or she "was okay with 10% tapering." I would present my tapering plan, don't ask for their permission, they generally don't know what to say.

[Giulietta]

15 hours ago, Altostrata said:

I would never ask a doctor if he or she "was okay with 10% tapering." I would present my tapering plan, don't ask for their permission, they generally don't know what to say.

 

You are right - patient should drive the rate of the taper.

 

I would not like to switch MDs. That being said,   I can be abrasive even though I try to not to be and would rather not alienate the physician (I have done this before).   I really need her in my corner and need to know she will support me throuogh this and I may need some hand holding . Otherwise I would  need to start looking for another MD pronto.

 

Although this MD is not the prescriber - we are on the same page. She advocates a slower approach for me (I am thinking of 1%) and to hold where I am at 3 months. She did suggest a very slow decrease to a lower dose of this drug instead of a goal of 0 mg. She is concerned about my quality of life throughout a taper and seizure control. 

 

I meet with the prescriber early next week.

 

Thanks for taking the time to swing by and comment.

 

 

 

[Altostrata]

I wouldn't be abrasive, just present your plan clearly and firmly, ask for what you need.

[Giulietta]

I don't mean to be abrasive - but sometimes I come across that way.  It's an ongoing work in progress.  😉

[Giulietta]

Happy Monday,

 

I thought I would post a brief update as I have not posted since 3/27.

 

From 3/29 - 4/6:

• Daily pattern: Awaken @ 3-4 a.m. with tremors, anxiety. Anxiety during the day.
• 5/8 mornings: Imbalance, leg dystonia L thigh, dizziness on H/A, diplopia/blurry vision intermittent throughout this week. 
• 3/8 Evenings: Tinnitis. tremors/jitteriness from 6 (sometimees 5) to bedtime at 10. One was really awful with GI, etc. as well.
• Occasional: heart pounding, GI, face tingling, auras

 

4/6: drop the last bead.

 

4/7 - 4/13 to date

• 4/7 - 4/10: Day mostly good with little anxiety, Fatigue. Tremors/jitteryness from 7 to 10.
• 4/11: Thighs weak. Fatigue. Mostly decent.
• 4/12: Awake @ 3 or 4 with chills and tremors. Lightheadness and fatigue.
• 4/13: L thigh pain and stifffness. Slight imbalance. Diplopia and blurry vision. Can't read the computer screen and trouble with paper. H/A. It's 11 a.m. don't know know what rest of day will hold.

 

Spoke to MD this morning - update re: duloxetine and clon taper. He advised to me to ride out symptoms. He wasn't as forthcoming about time for physical symptoms to subside even though he may probably has the answer.  No plans to taper clon yet although I expressed my interest in tapering off.

 

[Rosetta]

So happy for you, Giulietta! - Rosetta

[sunnysideup69]

Woo! @Giulietta,

Just read here that you've dropped the last bead. Did you taper off with bigger single beads, then middle sized ones, then smaller ones? A bit out of whack with keeping up with threads, been having a bit of a wave this month.....

I'm pleased for you. How are you feeling? If I'm understanding correctly above, seems you're doing okay, unless the H/A stands for high anxiety?

Anyway, am really happy for you that you've taken the plunge with that last bead. Bye-bye, SNRI ! Sending hugs and good wishes for any symptoms to settle down really soon.

 

[Giulietta]

On 4/19/2020 at 2:25 AM, sunnysideup69 said:

Just read here that you've dropped the last bead. Did you taper off with bigger single beads, then middle sized ones, then smaller ones? A bit out of whack with keeping up with threads, been having a bit of a wave this month.....

I'm pleased for you. How are you feeling? If I'm understanding correctly above, seems you're doing okay, unless the H/A stands for high anxiety?

Anyway, am really happy for you that you've taken the plunge with that last bead. Bye-bye, SNRI ! Sending hugs and good wishes for any symptoms to settle down really soon.

 

Hello Sunny!

 

I am duloxetine chemical free (but not WD free! ). It turned out that the beads were really the same size - only a few that where smaller. After 10 or more weeks on 1 bead I decided I had to be brave and jump. I knew there may be consequences. Yesterday morning was bad - symptoms other days but tolerable.

 

H/A does mean headache - and it is not sinus-related given the weather here.

 

How are you?  Will send you a PM. 

 

I've had my machine off - which is why I have not been on SA.

 

Big hugs,

G.

 

 

[Erell]

Wow ! Duloxetine free ! 

You brave woman ! ❤️

You can proud of yourself !!!

[sunnysideup69]

Waving hello, you probably have machine off, I know. Wishing you well, hope the cessation of Duloxetine is going okay, sending hugs xxx

[ShiningLight]

🧠💪👏😲😍🤩

Congratulations!!! Amazing!!!

[Giulietta]

Hello @Erell @sunnysideup69 @ShiningLight

 

Thank you for stopping by and your warm and congratulatory words. I have indeed restricted my use on the machine and SA - checking PM's every few days. Feel free to PM me.

 

About  symptoms, etc.

Even though my final bead was on 4/6 - I have continued to have the most incapacitating clustre of symptoms that began in 6/2019 - I wonder if these are WD or not.  These are the mornings of vertigo, weak legs, imbalance, diplopia, dizziness, etc ., etc.  This is several days a month. I'm not sure if it is slightly less acute or not. The MD said that unless she can see me when this occurs she can't provide diagnosis.

 

Re: clonazepam - my dose is unchanged. Every intention to get off - but not sure when to start tapering.

 

About you:

Are you all at home - wherever you live? I think @Erell must be working.

 

I hope you are all well - @ShiningLight I see you are down to 216 mg gabapentin a day! Wow. How are you feeling? Is the dystonia better?

 

@sunnysideup69 - how have you been doing since the passing of your family members? 

 

@Erell how are you - how is work - how have you been feeling with your prozac bridge?

 

Thank you for stopping by, again. I was just last night holding you all in my prayers and sending positive thoughts to you all - and others on SA - as we continue our journey together.

 

Hugs,

G.

 

 

 

[Giulietta]

Hello everone

 

I believe I have cymbalta withdrawal syndrome. I quit veritable cold turkey in 12,2018

and I believe this is why I have weak thighs, etc, can't walk, other motor issues, gut contractions, and have been unable to walk for 3+ hours in the morning plus otherdystonia, motor symptoms. not mentioning rrest of symptoms since i can bareklty type this morning

 

this is what it must be. started wtrih 1 episode in apr 2019, accelerted in june 2i019, then every month since september. it's about 11 days a month.

 

this morning i almost fell out of bed at 4.45 am.

 

I don't know what to do about this now..

 

many other symptoms which have come and gone.

 

also explains why i am really irritated and short of patience in themorning.

 

@Altostrata@Rosetta@Gridley

 

i have been off threads the past few months to see if lelss exposure to SA helps with anxiety as i mentioned in previous recent posts.

 

i don't know which MD to see. the psych on Monday said to see a general neurologist and would may need an mra or mri and labwork he didn't think this was chemically induced

 

thanks

g

 

 

 

[Gridley]

2 hours ago, Giulietta said:

 

i don't know which MD to see. the psych on Monday said to see a general neurologist and would may need an mra or mri and labwork he didn't think this was chemically induced

G,

So sorry you're going through this.

 

It sounds like withdrawal to me.  As you know, doctors don't believe in WD.

 

I would prefer a neurologist to a psych.  If you can manage it with the lockdown, it wouldn't hurt to see a neurologist and get those tests, just in case something turns up and if nothing else you would know it is WD.

 

Gridley

[Giulietta]

2 hours ago, Gridley said:

It sounds like withdrawal to me.  As you know, doctors don't believe in WD.

 

I would prefer a neurologist to a psych.  If you can manage it with the lockdown, it wouldn't hurt to see a neurologist and get those tests, just in case something turns up and if nothing else you would know it is WD.

 

Thanks, Gridly.  I am really frustrated and feel awful - so much anxiety, jitters, etc. It has been coming and going throughout the past few days. 

 

It's frustrating - nothing seems to help and I haven't seen anyone on site who has had these symptoms for so long a time.

 

I spent 2 hours on the phone this a.m. wtih the FDA reporting my WD effects - includign this one (this was my 2nd call to them about previous effects of WD last year).

 

 

 

[sunnysideup69]

Hello @Giulietta,

Good to see you and very sorry you are in WD from Cymbalta. I'm sending you lots and lots of love and big hugs. I'm still really impressed you're off...yay! But I know the WDs are tough for you.

This is really a long and gruelling road...

Lots of love, will post more later xxx

 

 

[Giulietta]

Just now, sunnysideup69 said:

I'm sending you lots and lots of love and big hugs. I'm still really impressed you're off

Hello Sunny,

 

Thank you for responding to my thread. I hope you are well (as can be!) and do write on my thread when you are up to it.

 

It is a particularly good day for hugs. Definitely a -number out of a score of 1-10 today for today with a full assortment of symptoms.

 

Thanks and hugs to you

G. 🤗

 

 

[Altostrata]

Giulietta, what is your current daily drug schedule? You're still taking lorazepam, clonazepam, gabapentin, lamotrigine?

 

Your symptoms sound like adverse effects of all those brakes. Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

[Giulietta]

52 minutes ago, Altostrata said:

Giulietta, what is your current daily drug schedule? You're still taking lorazepam, clonazepam, gabapentin, lamotrigine?

 

Hello Alto and everyone

 

Thank you for responding.

 

Daily drug dosage and times, etc. are unchanged and as follows:

 

7 a.m.: 300 mg gabapentin, .25 mg clonazepam, 2.5 mg lisinopril

1 p.m.: 300 mg gabapentin

6 p.m.: 600 mg lamotrigine ER

9-10 p.m. (bedtime): 400 mg gabapentin, .75 mg clonazepam

 

I just spoke with the neurologist. She believes this is due to my level of lamotrigine (last known to be 11.8). She asserted that this level could cause all of my symptoms. I will get my level checked first.

 

High levels of lamotrigine, I was told, can cause these symptoms even every few days. If I understood the MD correctly - this is because of the fluctuations of plasma level of the drug.

 

She indicated that until my body stabilizes on a new level of the drug I may expect auras and who knows what else. 😥  She suggrested I might take a bit more of clonazepam if I have auras (break throughs).

 

Will post separately about symptoms and do more of this.

 

Thanks,

G

 

 

[Sadness40]

Hi Giulietta,

 

I am sorry if my English is not understood, I am using a translator. I was taking 1200 mg of gabapentin for neuropathic pain for a month and a half and it was horrible. weakness in the legs and arms. I could barely walk. I couldn't handle the weight of the shoes. stiff legs. When I stopped taking it (too fast, but as the doctor indicated) I was improving little by little. I still have stiffness in my left leg but my legs are not heavy. Gabapentin gave me those motor problems.

 

a hug and a lot of strength.

[Altostrata]

24 minutes ago, Giulietta said:

High levels of lamotrigine, I was told, can cause these symptoms even every few days. If I understood the MD correctly - this is because of the fluctuations of plasma level of the drug.

 

She may have misspoken. At the level you're taking the drug daily, there's not much blood level fluctuation.

 

Sorry to ask this again: Why are you taking each of these drugs? There's a lot of duplication of effect among them.

 

Might I ask, why did you not confer with your neurologist about these adverse effects before asking here?

 

What is your neurologist's plan to reduce lamotrigine? Lamotrigine needs to be tapered, but at the high dosage you're taking, the first third could probably be reduced fairly quickly.

[Giulietta]

1 hour ago, Sadness40 said:

I was taking 1200 mg of gabapentin for neuropathic pain for a month and a half and it was horrible.

 

Hello Sadness,

 

Thank you for your helpful message. Gabapentin is/can be another nasty neuro drug. Reducing the level of that drug for me has been problematic too but I will give it another try at the right time. It took me 4 months to get on the drug - the symptoms were unbearable until my body got used toit. Vertigo, dizziness, nausea, couldn't walk.  I am glad your legs are improving.  This is a tough road.

 

58 minutes ago, Altostrata said:

She may have misspoken. At the level you're taking the drug daily, there's not much blood level fluctuation.

 

I wonder about that too. Maybe my level is higher than when it was last tested. I am very sensitive to meds.

 

1 hour ago, Altostrata said:

Sorry to ask this again: Why are you taking each of these drugs? There's a lot of duplication of effect among them.

 

I have a seizure disorder (gaba and lamotrigine) and clonaz for anxiety. Lisinopril for hypertension.

 

1 hour ago, Altostrata said:

Might I ask, why did you not confer with your neurologist about these adverse effects before asking here?

 

I have. She strongly indicated that it was the lamotrigine. I bravely reduced the dose by 25 mg a day and I had more auras than I could manage so I returned to 600 mg after a 4 day trial.  Reducing dose of lamotrigine is not pleasant for people with epilepsy.

 

1 hour ago, Altostrata said:

What is your neurologist's plan to reduce lamotrigine? Lamotrigine needs to be tapered, but at the high dosage you're taking, the first third could probably be reduced fairly quickly.

 

No specific plan discussed yet. When I dropped by 25 mg (600 to 575)  every day I had a lot of break through sz activity (auras).  I am nervous around meds for seizure management as are many people with sz disorders when they are essentially stable even if they have crummy side effects.

 

Thank you. I will post side effects tomorrow. I am drained by all of this. 

 

G.

 

 

 

[Altostrata]

19 minutes ago, Giulietta said:

I bravely reduced the dose by 25 mg a day and I had more auras than I could manage so I returned to 600 mg after a 4 day trial.

 

We would never suggest you reduce by 25mg a day over 4 days, that's 1/6 of your entire lamotrigine dosage.

[Giulietta]

2 hours ago, Altostrata said:

We would never suggest you reduce by 25mg a day over 4 days, that's 1/6 of your entire lamotrigine dosage.

 

I mean to say I was attempting to change my dose from 600 to 575 per day. The initial recommended drop was by 100 a day....to 500.

 

I see the symptoms (in addition to those pointed out by Sadness40) include others that I have.  I don't know if there is any labwork to test for a therapeutic (or high) level of gabapentin.

 

What is 'peculiar' to an uneducated one like myself is why these episodes are so uniform in symptoms and timing. If this was an elevated level of a drug level - would it present this way?

 

Because these episodes started in Apr 2019 - 4 months into WD - I associated them with WD.

 

I would appreciate your input.

 

About 10 mornings a months - 30 min after I get up - I am beset with a constellation of symptoms that generally include those below. These usually resolve in about 3 hours or a bit more.

• Weak/stiff thigh muscles
• Imbalance - struggle to walk unaided forwards (forget side to side or stepping backwards)
• Headturns
• Nystagmus, diplopia and blurry vision (significantly more than usual visual issues)
• Cognitive: trouble concentrating, memory, focus, etc.
• Fine motor skills - trouble hand writing
• Headache front of face - over bridge of nose

I really feel terrible and have run away anxiety. It's been bad for two weeks.

Thanks,

G.

 

 

 

 

 

https://www.medicalnewstoday.com/articles/323753

 

 

[Altostrata]

Adverse effects of drugs would appear in a regular pattern relative to your daily drug schedule. That is why I requested

6 hours ago, Altostrata said:

Giulietta, what is your current daily drug schedule? You're still taking lorazepam, clonazepam, gabapentin, lamotrigine?

 

Your symptoms sound like adverse effects of all those brakes. Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

However, if your neurologist is aware of this problem and has a solution, perhaps it's not necessary for you to supply this information to me. She gets paid for this, I don't.

 

In my opinion, the symptoms you report might be from the benzos you're taking, or gabapentin, not lamotrigine.

[Giulietta]

Hi Alto,

 

Thank you. 

 

11 minutes ago, Altostrata said:

Adverse effects of drugs would appear in a regular pattern relative to your daily drug schedule. That is why I requested

 

I tend to agree with a pattern given my experience with these meds but I am not familiar with elevated levels of lamotrigine ER.  Gaba seems  more logical with the timing. That being said, I've seen high levels of neurontin have a pattern of dizziness, nausea, head ache, imbalance/vertigo- but this is different.

 

I don't know how to explain this intense anxiety - would hi gaba cause this? It started with mornings and now it is all day.

 

I posted below a few problem days. I have had brutal anxiety all day so doing much is difficult. Thank you for bearing with me. 

 

In case useful:

Dates these symptoms presented in April: 1, 11, 12, 13, 14, 16, 20, 23, 26, 29

Dates these symptoms presented in May: 1, 2, 5, 12, 13, 14, 15, 23, 24, 29, 30, 31

 

May 22

7 get up

7.30 bfast, 300 mg gaba, .25 mg clon, 2.5 mg lisinopril

12 lunch

1 300 mg gaba

6 dinner & LTG ER 600 mg

10 400 mg gaba; .75 mg clon

Mostly OK. Some anxiety.

 

May 23

7 am. get up

7.30. imbalance, auras, stiff legs, dizziness, head turns, dystonia, diplopia, nystagmus, blurry vision, trouble concentrating, memory recall, trouble handwriting

7.45 bfast, 300 mg gaba, .25 mg clon, 2.5 mg lisinopril

12 lunch

1 300 mg gaba

6 dinner & LTG ER 600 mg

10 400 mg gaba; .75 mg clon

 

May 24

7 am. get up

7.30. legs bit stiff but can walk forwards slowly and carefully, not side to side or backwards, slight dizziness

7.45 bfast, 300 mg gaba, .25 mg clon, 2.5 mg lisinopril

12 lunch

1 300 mg gaba

6 dinner & LTG ER 600 mg

10 400 mg gaba; .75 mg clon

 

May 25

7 get up

7.30 bfast, 300 mg gaba, .25 mg clon, 2.5 mg lisinopril

12 lunch

1 300 mg gaba

6 dinner & LTG ER 600 mg

10 400 mg gaba; .75 mg clon

Mostly OK. Some anxiety.

 

May 26

7 get up

7.30 bfast, 300 mg gaba, .25 mg clon, 2.5 mg lisinopril

12 lunch

1 300 mg gaba

6 dinner & LTG ER 600 mg

10 400 mg gaba; .75 mg clon

Mostly OK. Some anxiety.

 

May 27

7 get up

7.30 stiff quadriceps, imbalance, head turns, h/a between eyes, diplopia/nystagumus/blurry vision, Glutes, stiff quadriceps, imbalance – better if I stand up straight without moving – and keep legs stiff.  Turning head and movement causes dizziness and H/A bet.  Diplopia and blurry vision worse than usual Difficulty with fine motor skills – particularly left hand fingers and when moving my left arm (off the desk about 8”) to lift something. Hand writing (R handed) is slower and slightly difficult.  Concentration, word retrieval

Was able to manage bfast and meds while the above was starting and take meds:

7.30 bfast, 300 mg gaba, .25 mg clon, 2.5 mg lisinopril

12 lunch

1 300 mg gaba

6 dinner & LTG ER 600 mg

10 400 mg gaba; .75 mg clon

 

June 9

7 get up. Awaken earlier in bed with anxiety, palpitations,etc.itteriness - notice this was the pattern the past week

7.30 bfast, 300 mg gaba, .25 mg clon, 2.5 mg lisinopril

12 lunch

1 300 mg gaba

6 dinner & LTG ER 600 mg

10 400 mg gaba; .75 mg clon

Anxious

 

June 10

5.45 a.m. awakened by dog. Get out of bed - legs weak. LIghtheaded. Very irritable.

Can walk around. Then back to bed.

7 a.m. up. legs stiff. imbalance, feel awful in general, light headed. trouble with speech. anxiety. don't remember what else. anxiety

12 lunch anxiety

1 intermittent depression and anxiety. what is this

1 300 mg gabapentin

anxious most of the afternoon. palpitations, etc.

6 pm dinner and 600 mg lamotrigine ER

Evening - a lot of anxiety, jitteriness, IBD, tinnitus

10 pm 400 mg gabapentin and .75 mg clonaz

 

maybe .5 mg lorazepam

 

Thanks Alto

[Giulietta]

Catastrophizing and trying not to - and trying not toget ahead of the ball with meds. LIke everyone here - or many here - wondering if I will get over this. I am not sure this is all attributable to high levels of meds. It started during my CT actue sumptoms in April.

 

Getting levels checked and will reduce just the same even though I am apprehensive about this.

 

Wed June 10

Took .5 mg ativan as suggested I might last night. Still had invisible eperson standing on my chest, pounding chest, agitated, etc., Did the usual non-med approaches first. Couldn't calm down. Took .5 mg ativan.

 

9.30 Took .5 mg ativan etc re; above.Reduced anxiety somewhat.

10 gabapentin 300 mg, .75 mg clonaz (note: I reduced gabapentin by 100 mg)

Trouble falling asleep and staying asleep

 

June 11-

6 a.m. awaken with jitters, anxiety, tired. Back to bed.

8 a.m. awaken, feel better, up breaskfast meds: 300 gaba, .25 mg clon, 2.5 mg lisinopril

Walk, person sitting on chest, agitated. Thinking about handling med issue and how to be rational about it instead of worried, communicating with health care team without irritating them, what to reduce, how much.

 

People with epilepsy are prone to anxiety and/or depression. I fall into this bucket and really don['t want to take one of tehse damn drugs again. The seizure drugs have long term bad cognitive effects and being on them lifelong was another glum thing to learn yesterday.

 

Thanks for listening...

 

 

[Altostrata]

Do you take a consistent amount of gabapentin pers day? What has been your gabapentin schedule for the last year?

 

When did you drop 100mg gabapentin? Which dose did you reduce? Do you increase and decrease your drugs as you wish?

 

Are you taking lorazepam occasionally? How often do you take it?

 

14 hours ago, Giulietta said:

I don't know how to explain this intense anxiety - would hi gaba cause this? It started with mornings and now it is all day.

 

This could be a paradoxical reaction from your high load of "brakes".

 

Since you've had these symptoms for a year, why haven't you talked to your neurologist about them?

 

As you are under treatment for a seizure disorder, your neurologist has the responsibility for balancing your drugs.

[Giulietta]

Hello Alto,

 

39 minutes ago, Altostrata said:

Do you take a consistent amount of gabapentin pers day? What has been your gabapentin schedule for the last year?

 

Yes. My dosages which have been unchanged: 7 a.m.: 300 mg; 1 pm 300 mg; 10 pm 400 mg.

 

The exception - I dropped 100 mg from last night's dose (not under MD direction) in hopes of alleviating the constant intense anxiety. I wil let the MD know. I would like to stay at 900 a day unless she advises otherwise.

 

43 minutes ago, Altostrata said:

Do you increase and decrease your drugs as you wish?

 

Not without communicating with the MD.

 

46 minutes ago, Altostrata said:

Are you taking lorazepam occasionally? How often do you take it?

 

Total of 4 tabs since Jan '20 . 

 

51 minutes ago, Altostrata said:

Since you've had these symptoms for a year, why haven't you talked to your neurologist about them?

 

I mentioned this last year - 2019  June or July - again earlier this year and this week again (to 3 MDs - all neuros).

 

[The symptoms I reported first appeared four months into WD (Apr 2019) so I lumped it into WD. It reappeared 2 months later as acute WD effects continued].

 

In June/July 2019 one of these MDs indicated my LTG is too high so I attempted to go down from 600 to 575 mg a day and I had a lot of break throughs over 3 days so I went back to 600.

 

54 minutes ago, Altostrata said:

As you are under treatment for a seizure disorder, your neurologist has the responsibility for balancing your drugs.

 

Yes - I am trying to establish a rapport and trust with a new neurologist over the past year and it's been difficult for a number of reasons. I'd like to make it work but if I hadn't been paying attention to medication dosages I could have had medical problems.

 

Thank you

 

 

[Altostrata]

When you went off duloxetine, you eliminated an "accelerator" that may have been balancing out all the brakes. Without duloxetine, your system slowed down and began to feel smothered by all the other drugs, thus the paradoxical reaction.

 

You're taking a kitchen sink of anti-seizure drugs. I'd question whether you need clonazepam at that dosage.

 

Could be the reduction in gabapentin reduces the overall adverse drug effects.

 

As you have a seizure disorder and are taking all these drugs under the care of a neurologist, your situation is too complicated for peer support. Please talk to your doctor about adverse drug effects. More is not better, no matter what they think.

[Rosetta]

Guilietta,

 

I wish you were feeling better.  I have several motor issues as well: dystonia, weakness, strange muscle twitches, and trouble using my eyes and hand on the right side.  If I have any seizures they are so mild as to be undetectable to me, a layperson.  However, I have been reading about dystonia recently, and, at times, an MRI can detect changes that have to do with dystonia.  
 

When I had an MRI for my neck area due to the weakness and numbness in my arm, the technician had to run the MRI three times.  He said that I kept falling asleep.  I was not aware of that, but he seemed to think I was jerking when I fell asleep, and this made the MRI useless.  Eventually, he had an image he could use.  The point of the MRI was to look for a nerve that was being compressed in my neck, not for imaging of my brain.  I now think there was a muscle twitch in my neck that was the issue.
 

Now that I understand more about dystonia, I realize that injuries to the left side of the brain affect the right side of the body and that dystonia presents in the opposite side of the body from the side of the brain that was injured.  I have dystonia from my toes to my temple including in my foot, calf, hip, back, chest, shoulder, neck, arm, hand, fingers, neck and jaw.  It is made worse if I use those muscles.  It is better at certain times of the month.

 

So, have you had MRIs in the past because of the seizures?  Maybe your doctors could review them instead of taking new ones.  Your doctor said you needed to see him or her WHEN you were suffering from the symptoms.  As we all know, that’s difficult, but if he or she could check old MRIs to look for something that was not the reason for the taking of the MRI perhaps you could get some answers.

 

I will be thinking of you.  I have no advice except the usual, “remember that this is temporary.“  That is difficult, I know.  It is still difficult for me.  I continue to believe that my period is the reason for the rather consistent changes in my symptoms.  I am now aware that the hormones that increase during particular times of the month - estrogen — somehow make dystonia less severe.  Estrogen therapy is a possible treatment for dystonia.  Of course it comes with several risks including the risk of further destabilizing a fragile nervous system experiencing dysautonomia aka withdrawal.  So, I wouldn’t recommend that for you right now, but it might be an option someday.  It would be a tough decision as any disruption in the natural hormone balance of the body has risks.

 

Hang in there, Rosetta

[Giulietta]

Hello Alto,

 

Thank you for your support and wisdom. I am suffering a tremendous amount of anxiety and sleep deprivation and my seizure meds have not been identified as the cause of this - maybe the dulox CT is to blame for my ills.  Working with MDs about the seizure meds and the less you can take the better off you are.

 

On 6/11/2020 at 2:38 PM, Altostrata said:

As you have a seizure disorder and are taking all these drugs under the care of a neurologist, your situation is too complicated for peer support. Please talk to your doctor about adverse drug effects. More is not better, no matter what they think.

 

 

Hello Rosetta,

 

On 6/13/2020 at 4:36 PM, Rosetta said:

I have several motor issues as well: dystonia, weakness, strange muscle twitches, and trouble using my eyes and hand on the right side.

 

Thank you for the message and sharing your situation with muscular issues. Serotonin is everywhere isn't it?  Except for the large muscle groups (glutes, quads) my left side is affected with dystonia and twitches (the pesky abnormality is in my right hemisphere). The eyes are interesting, aren't they.   I am beginning to wonder if my situation is related to anxiety. It's interesting that you have similar symptoms. Do you have diplopia, nystagmus etc.as well? How long has this been happening and how debilitating is it?

 

My anxiety has been relentless and nights are terrible. I am lucky when I can sleep 6 hours. People with epilepsy need their sleep. I see you take unisom and I hope that helps you.

 

I have had MRIs. When I am tired it is easy for me to fall asleep in them.  One MD suggested another MRI (it's been a year) and an MRA (vascular). Today I see another neurologist at another hospital - I'm looking at this as an opportunity to learn something. The person may say, oh, yes, I've seen that with people getting off ADs and what to expect.  

 

On 6/13/2020 at 4:36 PM, Rosetta said:

I continue to believe that my period is the reason for the rather consistent changes in my symptoms.  I am now aware that the hormones that increase during particular times of the month - estrogen — somehow make dystonia less severe.

 

Menstrual cycles affect just about everything. Estrogen is not helpful in women and progesterone is (for example). In women of menstruating age estrogen agitates the nervous system and seizure activity and auras, etc. may follow a 'catamenial' pattern. They did me. During the follicular period - I had a lot of auras.

 

Estrogen is  a pro-convulsant hormone so supplements are ill advised for women with a history of seizures (even a very low dose transdermal patch).

 

All this being said, and none of us here want a damn thing to do with them, clonaz is a possible treatment for dystonia - and I am on this. After the past few weeks I've tabled tapering it. 🙁

 

On 6/13/2020 at 4:36 PM, Rosetta said:

any disruption in the natural hormone balance of the body has risks.

 

Quite true.

 

Thank you for the kindness. 

 

Hugs,

G.

 

 

[Frogie]

Hi G

 

Just checking on you?

 

Take care,

 Frogie xx

[Giulietta]

Hello @Frogie  - More hoops to jump through! But one at a time.  I have been thinking of you and wondering how you are.

 

I have an update  maybe a breakthrough. It is logical. @Gridley what do you think?

 

On 6/13/2020 at 4:36 PM, Rosetta said:

I wish you were feeling better.  

 

The 4th (or 5th?) MD I spoke with told me she had heard of my imbalance, morning, etc. symptoms before. She indicated that this is a manifestation of anxiety.  I suffer from morning anxiety because the clonaz has worn off before I can take my next dose. If fact, the nocturnal panic attacks (I believe that is what they are - and they are miserable) may be related to this.

 

I don't know when it is wearing off because I started having nocturnal panic attacks this week.

 

The MD indicated I should see my/a psychiatrist and start a new med to bring down the anxiety - and then get off the clonazepam. She is aware of the cognitive damage that can/does result from the cocktail of drugs I am on.

 

Honestly.

[Altostrata]

On 6/11/2020 at 11:38 AM, Altostrata said:

When you went off duloxetine, you eliminated an "accelerator" that may have been balancing out all the brakes. Without duloxetine, your system slowed down and began to feel smothered by all the other drugs, thus the paradoxical reaction.

 

You're taking a kitchen sink of anti-seizure drugs. I'd question whether you need clonazepam at that dosage.

 

Could be the reduction in gabapentin reduces the overall adverse drug effects.

 

As you have a seizure disorder and are taking all these drugs under the care of a neurologist, your situation is too complicated for peer support. Please talk to your doctor about adverse drug effects. More is not better, no matter what they think.

 

29 minutes ago, Giulietta said:

The 4th (or 5th?) MD I spoke with told me she had heard of my imbalance, morning, etc. symptoms before. She indicated that this is a manifestation of anxiety.  I suffer from morning anxiety because the clonaz has worn off before I can take my next dose. If fact, the nocturnal panic attacks (I believe that is what they are - and they are miserable) may be related to this.

 

I don't know when it is wearing off because I started having nocturnal panic attacks this week.

 

The MD indicated I should see my/a psychiatrist and start a new med to bring down the anxiety - and then get off the clonazepam. She is aware of the cognitive damage that can/does result from the cocktail of drugs I am on.

 

This is very stupid. I am sorry you have to work with doctors to deal with what we know is breakthrough anxiety from a clonazepam dose wearing off (and possibly gabapentin as well). They are very poorly informed about this.

 

Breakthrough anxiety is not a manifestation of a psychiatric condition but a type of withdrawal symptom. Adding another drug is not going to help. What we do is distribute the clonazepam doses so you don't have interdose symptoms, not escalate your drug dependency.

 

What you need to find is a doctor who understands how to taper benzodiazepines and who will work with your seizure specialist. As I have explained, we don't treat seizure disorder here. Personally, as an amateur, I question whether you need 4 anti-seizure drugs to control your seizure disorder, that seems really sloppy.

[Giulietta]

1 hour ago, Altostrata said:

Breakthrough anxiety is not a manifestation of a psychiatric condition but a type of withdrawal symptom. Adding another drug is not going to help. What we do is distribute the clonazepam doses so you don't have interdose symptoms, not escalate your drug dependency.

 

Hello Alto,

 

If you were a seizure patient - would you look to a neurologist or psych to do the tapering?

 

Thanks. I know you're busy.

 

G.

 

(fortunately I am on only 2 seizure meds - that's one thing I have going for me)

Edited June 17, 2020 by Altostrata
removed spaces