# klonopiN



## Da'Burgh (Apr 25, 2005)

Do klonopin make DP and DR worse? What are some effects and symptoms of withdrawl? Any info would be super helpful. :?:


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## dakotajo (Aug 10, 2004)

THIS IS ONLY MY OPINION, but Id keep clear of it. Its the most potent of all the benzos. Benzos are well known for their tolerance producing, addictive qualities. This class of drug, initially works well anxiety(so it helps with dp/dr), but it can come at a great price. It worsens depressive states and it will more than likely eventually aggravate an anxiety disorder which will make your dp/dr much worse.

This class of drug should be reserved for very short term use only. Id use it sparingly only during times of SEVERE anxiety/panic.

Joe


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## dakotajo (Aug 10, 2004)

Even after short-term use of clonazepam, there is evidence of physiological
dependence and consequent adverse withdrawal symptoms. Abrupt discontinuation of benzodiazepine therapy has been reported to cause withdrawal symptoms including irritability, nervousness, and insomnia. Benzodiazepine withdrawal is more likely to occur following abrupt cessation of excessive or prolonged doses, but it can occur following the discontinuance of therapeutic doses that have been administered for as few as 1?2 weeks. Abdominal cramps, confusion, depression, perceptual disturbances, sweating, nausea/vomiting, paresthesias, photophobia, hyperacusis5 , tachycardia, and trembling also occur during benzodiazepine withdrawal, but these reactions are less frequent. Convulsions, hallucinations, delirium, and paranoia also can occur. Benzodiazepines should be withdrawn cautiously and gradually, using a very gradual dosage-tapering schedule


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## Da'Burgh (Apr 25, 2005)

Joe,

What are some effects and symptoms of withdrawl?


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## dakotajo (Aug 10, 2004)

Well...I quickly tapered klonopin and almost killed myself so Im probably not the best person to ask. This is my experience. I had been on it for 9 months at 2 mg. By month 3, I was already in severe tolerance and I was very sick. I decided to taper very quickly. When I withdrew, I had SEVERE anxiety/panic, depersonalization, derealization, seizures,delusions, horrific irrational fear, auditory and visual hallucinations, a feeling like my entire body was on fire, vomiting, twitching and spasming and many more symtoms. It was terrible.

I spent the first 12 days in and out of a emergency room because of life threateing blood pressure. I also spent 24 hours in a locked psychiatric ward. I had to get injected with narcotic pain killers to try to dull the burning I had all over my body. It was the worst experience of my life and the bad stuff lasted for 2 months.

Im not sure when the actual withdrawal ended because the severe stress I was put thru Im sure was enough to wreak havoc on my body and mind. I do know at 1 year off I still felt pretty bad.

Take some good advice. This class of drug is physically and psychologically addictive and Im sure if you do a little reasearch you will find out what Im talking about . If you are in bad shape and need instant relief than use it very sparingly. Do not take it on a regular basis. This stuff is very potent and has a long half life so it can cause a severe addiction in as little as 2 weeks. In my opinion the last thing a person with mental issues needs is to add the stress of addiction and withdrawal.

Joe


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## rainboteers (Apr 5, 2005)

OH WOW! Gonna do my best to stay away from the xanax now. I think I am addicted to it already. I have been on it 2 months. What about Buspar for anxiety. My dr. wants to add it to Celexa because my anxiety is seriously out of control. She also mentioned neurontin? Any info or advice.


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## Da'Burgh (Apr 25, 2005)

Well, thanks for scaring the shit out of me. I have been taking klonopin for about 4 weeks(?) and I have made ten tablets last that long, showing how much I actually take them. (At .5 mgs.) About 1-2 weeks ago I stopped taking them. Are chances of withdrawl symptoms high? I do get twiches and stuff... I'm just worried about other problems that you stated. 

P.S. I have 4 tabs left - so I really haven't used many... does this matter?


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## dakotajo (Aug 10, 2004)

Hi,

Dont scare yourself. What I went thru was due to a very abrupt withdrawal. I had a very ignorant doctor that knew nothing about benzodiazapene addiction and withdrawal. If you taper very slowly, the severe symptoms can be largely avoided. I still stick to my beliefs tho that this class of drug should be reserved for occaisional severe periods of anxiety and panic.

The buspar works primarily on serotonin so once you get stabilized on an ssri, It may help to potentiate the effects of the AD. In my case, solo it did nothing but it had great anxiolytic effect in combo with Celexa.

Ive never tried Neurontin. Ive read its very weak. It works on gaba like benzos but doesnt have the addictive qualities.

Joe


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## dakotajo (Aug 10, 2004)

How long have you been completely been off the Klonopin?


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## Da'Burgh (Apr 25, 2005)

I used it only when I felt I really needed to. How would I slowly taper from .25 mg of Klonopin or is there really no need?

I really only used a half a pill every few days or so.


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## Da'Burgh (Apr 25, 2005)

I've been off it for about a week and a half 2 weeks(?)


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## dakotajo (Aug 10, 2004)

Hi,

Thats a very small dose and you havent been on long. My guess is you should be fine quitting without a taper. You shouldnt experience any withdrawal. Im guessing your doctor will tell you the same thing.

The thing about benzo addiction is most people start out the same as you. Unfortunately they reach tolerance and need more and more. Before they know it they are a long term, high dose user and withdrawal is very difficult.

Shit can the Klonopin and find a different drug that has anxiolytic properties without the risks of severe addiction. Feel good that you probably dodged a bullet.

Joe


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## Da'Burgh (Apr 25, 2005)

Thanks for the info, I was pretty scared about that.


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## Dreamer (Aug 9, 2004)

I always like to mention there is one person here I know very well who had excellent results on Neurontin and remains on it.

Also, the irony of life. I seem to be developing an "essential tremor" -- I inherited this from my father who had to stop performing surgery in his late 60's I believe. The tremor in his hands was rather bad, but he lived until 84, and it was a bad heart that did him in.

I have calmed down a bit about this, though I am not thrilled. I see a neurologist in June.

Thing is, what is used to treat essential tremor? Inderal (which is one drug that was one of the worst meds I've ever taken -- gave me heart problems that were not permanent and didn't help my anxiety), and BENZOS! Well, I'm already on 6mg Klonopin and have been for many years. I just like to counter Joe's experience with a tad more positive one for me.

Everyone is different.

Also, it is recommended for people with essential tremor who avoid social situations because of shaking hands have a DRINK OR TWO, LOL. Seriously.

I can't drink!!!! It makes the DP/DR much worse!

There is one other med that is a possiblity. I don't need something like that now, but this tremor REALLY has gotten bad suddenly. Due to a LOT of stress. I'm going to hold off on any more meds, however:

1. I have never grown tolerant to Klonopin (6mg/day) since 1987. I'm now on the generic clonazepam.

2. It is recommended (actually various benzos) for a large number of the population with tremors. (This increases over age 40, though not every older person gets tremors).

*My point ... we're all unique, and Joe I'm not posting this to bug you. I had to laugh when I found out the treatment for this essential tremor, which I have apparently inherited from my father, is treated with benzos and alcohol, LOL.*

Cheers folks ... hic 8) 
:mrgreen: 
At least I can laugh at this this week. I was a disaster over this since I got the pretty clear Dx. Final Dx in June by the neurologist. My father's tremor made the GP say, "Oh, yeah, essential tremor" as he made my hands shake more with various neurological tests. SIGH.

ONE THING AFTER ANOTHER!
Dreamer


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## rainboteers (Apr 5, 2005)

One thing after another... 
Yes I understand. When it rains it pours.

Another day has almost come and gone
Can?t imagine what else could wrong
Sometimes I?d like to hide away somewhere and lock the door
A single battle lost but not the war (?cause)

Tomorrow?s another day
And I?m thirsty anyway
So bring on the rain

It?s almost like the hard times circle ?round
A couple drops and they all start coming down
Yeah, I might feel defeated,
I might hang my head
I might be barely breathing - but I?m not dead

Tomorrow?s another day
And I?m thirsty anyway
So bring on the rain

I?m not gonna let it get me down
I?m not gonna cry
And I?m not gonna lose any sleep tonight

:wink:


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## dakotajo (Aug 10, 2004)

Dreamer,

How do you know you arent tolerant to the klonopin? You take the equivalent of 120mg of valium daily. You still experience anxiety at a dose that would put most people in a coma or coffin. Thats not a good sign that the klonopin is doing much good.

You now have a tremor? You talked about having tinnitus? Both of these are signs of tolerance withdrawal. I remember specifically that my hands started to shake nonstop when I reached tolerance. It went away once I got thru the severe withdrawal. It occurs when adrenaline starts running unchecked.

In my opinion, booze and benzos are a ridiculous treatment plan for any problem. Im guessing neither would have any effect on you any more.


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## Dreamer (Aug 9, 2004)

Joe, Joe, Joe ....

*Sometimes a cigar is just a cigar, and sometimes a physical illness is just a physical illness. You need to be informed.*

See this excellent link to essential tremor. My father had it. He was never on a psychotropic med in his life. He was born in 1906 for God's sake, LOL. Never believed in psychiatry. He self medicated his tremor with alcohol, NOT in excess!

*Also, my tinnitus was caused by an ear infection. It's gone. I have a bad sinus which I had surgery for back in 1993. Also had my tonsils out. Infections ceased as did tinnitus. When infections return with FAR less frequency, I occasionally get tinnitus. No connection with Klonopin. A course of antibiotics eliminated it. I don't have tinnitus!!!!*

*Joe, you have to READ reputable sources. And I have seen not only my shrink, but my GP, a medical resident, and will be seeing a neurologist in June. The GP diagnosed "essential tremor"!*

Here's stuff on essential tremor. Also, I recently have had 4 vials of blood drawn which is being analyzed for differential diagnosis which could be a thyroid problem, and about a million other things.

Benzos are used in medicine for many things. Try living with essential tremor. If you have something that works to improve quality of life, you use it. You have an informed decision to make, yes. I'm not going to increase my Klonopin, or add any Benzos myself, or start drinking, LOL. I will wait for my blood tests, and see the neurologist. Per 3 doctors so far this has NOTHING to do with any psychotropic med I'm on.... particularly Klonopin!

*There are a lot of folks out there who can't function with essential tremor. And many who get it who've never been on psychiatric meds!!! Good grief. In rare cases, newborns have essential tremor!!!!*

*Ya' gotta believe me Joe, that this is MY way of treating myself. I'm not pushing it on anyone. I'm giving another view is all.*
--------------------------------------------------------------------------
READ THIS!!!!!
http://www.emedicine.com/neuro/topic129.htm

*Causes: ET probably represents a syndrome; multiple etiologies can be identified. Most or all of these causes are probably genetic.

ET is familial in at least 50-70% of cases. Transmission is autosomal dominant, with incomplete penetrance. Some cases are sporadic with unknown etiology.*

Variations in methodology (assessment procedures and diagnostic criteria) account for the wide variation in findings; reported studies have found that *17% to almost 100% of cases are familial.*

*One study demonstrated an increase from 67.7% to 96% of cases having an affected relative after repeated and varying questioning, followed by direct interviewing of family members. MY FATHER HAD THIS! HE HAD TO STOP BEING A SURGEON BECAUSE OF IT!!!!! I am not pleased!!!!!*

*Genetics: Two susceptibility loci have been found.*

The FET1 gene is located at 3q13 and was identified in 75 members of 16 Icelandic families.

Another locus, 2p25-22, was identified in 15 members of 4 generations of Americans. Abnormalities found in 3 additional American families have been reported to map to this locus.

In one family with levodopa-responsive, autosomal dominant, Lewy body parkinsonism, a chromosome arm 4p haplotype that segregates with the disease was identified. This haplotype also occurred in individuals in the family who did not have parkinsonism but rather a postural tremor consistent with ET. This suggests that in some cases postural tremor can be an alternative phenotype of the same mutation.

Associations between ET and Parkinson disease (PD) and ET and dystonia have been suggested.

ET has been hypothesized to be a risk factor for the development of PD. Some patients with PD report a longstanding history of bilateral upper extremity postural tremor. Without biological markers for these diseases, determining whether longstanding postural tremor is part of a PD syndrome or reflects the presence of both ET and PD is not possible.

Some patients with focal dystonia, such as torticollis, have mild bilateral upper extremity postural tremors. Without biological markers for these diseases, determining whether postural tremor is part of a focal dystonia syndrome or reflects the presence of both dystonia and ET is not possible.

*Other diagnostic considerations:* The Movement Disorders Society has proposed the following diagnostic criteria for classic ET:
Inclusion criteria are as follows:

Bilateral, largely symmetric postural or kinetic tremor involving hands and forearms that is visible and persistent

Possible additional or isolated tremor in head but absence of abnormal posturing
*Exclusion criteria are as follows:*

Other abnormal neurologic signs, especially dystonia

The presence of known causes of enhanced physiologic tremor, including current or recent exposure to drugs that are known to cause tremor or a drug-withdrawal state. *Per my doctors, this does NOT apply to me. My genetic propensity is the suspect.*

Historic or clinical evidence of psychogenic tremor

Convincing evidence of sudden onset or evidence of stepwise deterioration

Primary orthostatic tremor

Isolated voice tremor

Isolated position-specific or task-specific tremors, including occupational tremors and primary writing tremor

Isolated tongue or chin tremor

Isolated leg tremor

DIFFERENTIALS Section 4 of 9 
Author Information Introduction Clinical Differentials Workup Treatment Medication Follow-up Bibliography

Arsenic 
Caffeine - I DON'T drink this anymore because of its worsening my DP and causing the tremor to get worse.
Multiple System Atrophy 
Parkinson Disease 
Parkinson-Plus Syndromes 
Thyroid Disease 
Torticollis 
Wilson Disease 
------------------------------------------------------------
I pray to God I don't have Parkinson's. It was suggested since my mother said my father HAD Parkinson's I could have that. God help me. But my mother was nuts. She'd say things that weren't true 87% of the time.

I'll find the treatment section.

*The neurological visit and bloodwork wlll be a process of elimination. My GP was about 90% certain this is essential tremor which is YES exacerbated by anxiety and stress. I'm a MESS! What can I do? Buddhist thought, yoga, some vitamin treatments -- RADICAL ACCEPTANCE. Living every day to its fullest.*


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## Dreamer (Aug 9, 2004)

*This is edited.
Treatments for Essential Tremor -- I am NOT PLEASED, but what

choices do I have, Joe?????*

*Medical Care:* Primidone and propranolol are the cornerstones 
of maintenance medical therapy for ET. These medications provide 
good benefit in reducing tremor amplitude in approximately 75% of 
patients.

......................

*Some patients require only intermittent tremor reduction, such 
as when attending a meeting or engaging in a social activity. For 
these patients, a cocktail or beer prior to the activity may be 
sufficient.*

An alternative is propranolol (10-40 mg) 
approximately one half hour prior to the event. Alcohol consumption 
is not an appropriate maintenance therapy for patients who seek 
tremor reduction throughout the day.

*Alcohol*

.......

The mechanism of tremor reduction by alcohol is unknown. In a 
double-blind study, the 6-carbon alcohol methylpentynol did not 
have any effect on tremor. This suggests that the alcohol group of 
ethanol is not the element that provides antitremor activity and 
that ethanol's antitremor effect is not due to sedation.

Restricted intra-arterial ethanol administration does not reduce 
tremor in the perfused limb. This suggests that ethanol's effect is 
mediated centrally.

*Propranolol - I can't drink and I can't use Propanolol, the first logical line of treatment*

Winkler first noted remarkable tremor reduction in a patient 
treated with propranolol for paroxysmal atrial tachycardia. 
In a double-blind crossover study, propranolol at doses from 60-240 
mg/day reduced tremor in 75% of patients with ET. In a 
dose-response study, 240-320 mg/day was found to be the optimal 
dose range with no additional benefits above 320 mg/day.

Average tremor reduction is 50-60%, but some patients experience 
marked tremor reduction and others no benefit.

.............................

*Primidone*

O'Brien initially observed that primidone, when administered to a 
patient with epilepsy and ET, reduced tremor. In a 
placebo-controlled study, primidone significantly reduced tremor in 
otherwise untreated patients and patients treated with propranolol.

Doses greater than 250 mg per day did not provide additional 
benefit.

The mechanism of action is unknown. Active metabolites are 
phenylethylmalonamide (PEMA) and phenobarbital. PEMA has no effect 
on tremor, and phenobarbital has only modest effect on tremor.

Tremor reduction is not correlated with serum levels of primidone 
or phenobarbital.

*Clozapine*

A single dose of 12.5 mg clozapine and placebo were compared in a 
randomized, double-blind, crossover study in patients with 
drug-resistant ET. Tremor was reduced significantly by clozapine in 
13 of 15 patients (P<0.01).

A significant reduction of tremor was reported with long-term 
(open-label) clozapine therapy (39.9 mg/d). 
No tolerance was observed over 15 months.

*Mirtazapine*

In a small, open-label case series, mirtazapine was reported to 
reduce tremor in patients with ET and PD. 
Currently the authors often try mirtazapine as a second-line agent.

*Gabapentin:* A double-blind crossover trial comparing 
gabapentin (400 mg tid) to propranolol (40 mg tid) found that both 
drugs demonstrated significant and comparable reductions in tremor 
compared to baseline. However, a double-blind, placebo-controlled, 
crossover study identified no difference between gabapentin and 
placebo.

*Benzodiazepines:* Benzodiazepines, particularly clonazepam 
and alprazolam, are used commonly in the treatment of ET, but their 
effectiveness is limited. They probably work to reduce anxiety that 
can amplify tremor amplitude.

*Botulinum toxin:* Botulinum toxin has been evaluated for the 
treatment of ET. Its use in the treatment of tremor of the upper 
extremities is limited because it commonly causes weakness. It is 
more useful in the treatment of head tremor, as it often provides 
benefit without unwanted troublesome weakness.
Practical management of pharmacologic therapy

*If sufficient benefit is not achieved with primidone or 
propranolol, other medications are considered based on the severity 
of the residual tremor.

The authors often try mirtazapine as a second-line agent. 
If the tremor is mild and more of a nuisance than disabling, 
benzodiazepine is considered, usually clonazepam.*

If the tremor is severe or causing disability, clozapine is 
introduced next. Blood monitoring is required with this drug, and 
patients sign informed consent in the light of the rare risk of 
agranulocytosis.

For patients with head tremor, cervical injections of botulinum 
toxin may be given.

*Surgical Care:* For patients with medically refractory, 
disabling upper extremity tremor, surgery is considered. 
Stereotactic thalamotomy and thalamic ventralis intermedius nucleus 
deep brain stimulation (DBS) are the procedures of choice.

----------------------------------------------

*DEAR GOD I DON'T WANT SURGERY. BUT I'LL DO IT IF THIS 
PROGRESSES. MAYBE IT'LL HELP THE DP FOR GOD'S SAKE. I have to pick my poison on this. I'm really scared.*

*Joe, I could really use a little emotional support here. I 
appreciate that you have not been as agressive with the anti-benzo 
stance which IS legitimate in many cases. NOT IN MINE*

Peace,
Dreamer


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## Homeskooled (Aug 10, 2004)

Dear Dreamer, 
I dont know alot about essential tremor - just a little. I cant say whether any psychotropic drugs would cause it or not. I'm sure its in the side effects of almost all nervous system medicines. You might want to access a PDR, searching for tremor as a side effect to any of your meds. If it is indeed inherited, I wouldnt try Clozaril if I were you. Its far, far too strong of an antypsychotic. I would try Gabapentin. It bypasses your liver, and is really easy on the system. Some say its a little too easy, and that it does pretty much nothing, but its just a false neurotransmitter, and everyone will respond differently to it. I do know that if you are under alot of stress, you can also have a hand tremor. I've had them periodically this year, while I've been sick, and it probably was due to being over-andrenalized with whatever my condition is. Dont get a deep brain stimulator, unless it gets really, really bad. Essential tremor isnt anything serious, but a surgery into the deep brain is. I'd exhaust all other resources, even some of DakotaJoe's theories , before doing that. I really hope it gets better, but dont worry about it too much. I know its tough, but I've gotten rather stoic about this kind of stuff. Hopefully, when your move ends, the tremor will settle down. Your in my prayers.

Peace
Homeskooled


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## dakotajo (Aug 10, 2004)

Well...I went thru tremors during my klonopin addiction and withdrawal. I also got the morning tremors during my alcoholic daze. Ive read all over the place this can be caused by weakened gaba and unchecked adrenaline.

I dont know why you have tremors but I think you will be in denial no matter what. I guess thats what addiction is all about.


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## dakotajo (Aug 10, 2004)

What is it?
Tremor is an involuntary, rhythmical, shaking movement, usually of the hands, lower arms, and head.

Who gets it?
Tremor occurs as a symptom of some neurological diseases, such as Parkinson's disease and multiple sclerosis, and in people with diseases of or damage to the cerebellum. Some people inherit this condition from a parent who has tremors, or develop it as a side effect of certain drugs or underlying disease. Tremor can affect both men and women.

What causes it?
Tremor occurs when the muscles relax and contract repeatedly. While most people experience a tremor at some time, usually because of fear or excitement, a number of neurological diseases that destroy nerve tissue cause uncontrollable tremor. These include Parkinson's disease and multiple sclerosis. Other causes include stroke or head injury; Wilson's disease, a hereditary disorder in which toxic levels of copper accumulate in the tissues; mercury poisoning; an over-active thyroid gland; and liver encephalopathy. Tremor can occur as a side effect of drugs including amphetamines, antidepressants, antipsychotics, caffeine, and lithium, and as a result of withdrawal from alcohol or addictive drugs.


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## Dreamer (Aug 9, 2004)

dakotajo said:


> Well...I went thru tremors during my klonopin addiction and withdrawal. I also got the morning tremors during my alcoholic daze. Ive read all over the place this can be caused by weakened gaba and unchecked adrenaline.
> 
> *I dont know why you have tremors but I think you will be in denial no matter what. I guess thats what addiction is all about.*


Joe, I don't need this. Why do you say this to me, when MANY others on this Board take benzos, and others take MORE meds than I do? I've asked you this in PMs a million times. You never answer the question. Why me? I don't dare diagnose you. How dare you diagnose me? HOW DARE YOU? How dare ANYONE on this board apply there one experience to others? HOW DARE ANYONE ASSUME WHAT IS WRONG WITH ANY OF US?

I apologize if I have ever done that.

So my GP who spent an hour on me, the nurse who took 4 vials of blood and also observed me, the medical resident tagging along with my GP looking up everything in the PDR for the GP.... doesn't matter to you. They're all idiots I assume.

I have had a small bilateral tremor in both hands... an INTENTION tremor, not a RESTING tremor... for about 2 years. It has gotten much worse since: (Do you know the difference between resting and intention tremor, bilateral vs. unilateral?) Have you had a neurological exam for essential tremor or Parkinson's? Do you have a family member with ET?

Recent stressors:

1. My dear friend commited suicide
2. I started prepping to move
3. I plan on starting a regular volunteer position
4. I found I may have colon polyps -- surgery in July

That's about enough stress, hmmm? But I've been managing my DP/DR better since my DBT therapy (4 months).

I also have a slight bilateral tremor in my jaw, and sort of a tic in my neck. Bilateral tremor in my upper arms... only INTENTION tremors. These are all INTENTION tremors, not occuring in a resting state. That is when I make a move to do something. Same with my father -- exactly. I am at an age when this usually starts. Over 40. I'm 46.

*Homeskooled, I appreciated what you said AND HOW YOU SAID IT. With concern and kindness.*

Joe, I don't need to be lectured that I am in denial. 
My GOD I've never know anyone more cruel in my entire life save my mother and that's saying a helluva lot.

*SORRY TO EVERYONE ELSE HERE. I AM AN IDIOT EVERY TIME I TRY TO POST IN REPONSE TO WHAT JOE SAYS. I'M CREATING THIS PROBLEM FOR MYSELF. SORRY DA'BURGH FOR HIJACKING YOUR POST. ANY MODERATOR IS WELCOME TO DELETE THIS AFTER JOE HAS SEEN IT. DENIAL MY ASS.*


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## SillyPutty (Mar 29, 2005)

Dreamer, I'm new here and I don't know any of you very well but I don't want anyone to feel scared or alone. You all have helped me so much and
Dreamer it seems to me you are a significant contributer here, I know your info has helped me before please don't leave.


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## Dreamer (Aug 9, 2004)

Dear Sillyputty,
I'm not leaving, but I am constantly hurt by Joe. It is my fault for trying to give my experience.

It is my fault that I trigger responses like this.

It hurts and I'm afraid, and he doesn't understand. I have to accept and understand that.

Thank you for your support.

Take care,
D
Not leaving, just very angry and sad and alone and scared. I know better not to ask Joe for any concern or comfort. I know better.


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## SillyPutty (Mar 29, 2005)

It is my fault for trying to give my experience.

It is my fault that I trigger responses like this.

It hurts and I'm afraid, and he doesn't understand. I have to accept and understand that.

Dreamer it's not your fault, that is what this site is for right and I appreciate everyone sharing these personal experiences and we should all be sensitive to the fact that what we post here even though it's the web, is personal. Please let me know if there is anything I do/say to help.
You are not alone and never will be. We will all always be here for each other.

Keep your head up.


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## Homeskooled (Aug 10, 2004)

Dear Dreamer, 
If it is bilateral, as well as having neck spasms, have they ruled out Parkinsons? Parkinson's can also have intention tremors, but they are usually accompanied by a resting tremor as well. However, both are, to my knowledge, diagnosises of exclusion. Frankly, I would hope that you have a essential tremor over that any day. I've had essential tremor mentioned to me before as a possibility if my hand tremors get worse, but that was at a neuro appointment for increased intracranial pressure, so it was the least of my worries at that point.

I try to give the most honest and helpful advice I can, with the knowledge I have learned. I hope I didnt offend you in any way. I would lay all of this out to the neuro, and definitely not worry. Familial essential tremors are pretty common problems at neuroligists offices, and they should have the problem wrapped up after one or two visits. I'm sure he'll repeat his neuro exam, and have a look at your outstretched hands, your gait, and your reflexes, check for nystagmus, etc....Dont be alarmed if he orders a head CT. He may just be satisfied with a fundoscopic exam. As for your colonoscopy, I imagine they suspect polyps from either a CT or a specimen. The colonoscopy isnt rough at all. The prep is, though. Take it easy the day before. The laxative is really rough- a bit like having the flu. I might have to pursue one in the future, but for right now, I've already had an endoscopy, and I want to see what my other options are. Unfortunately, I dont take anesthesia well, and I had to have it without. Scary, very scary. Okay, good luck with the neuro appointment, and like I said, I'm sure they'll have it well under control soon.

Peace
Homeskooled


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## Guest (May 23, 2005)

oh, for crying out loud, leave her alone.

Not everyone is the same.

I took valium every day (about the same amount of klono that Dreamer takes) for over 20 yrs....20 years people. And I had no addiction, no withdrawal beyond just a little jitterness and a week or more trouble falling asleep

We're DIFFERENT and some of us needed to use benzos to get through. Not everyone will become an alcholic if they drink or a coke addict if they snort. Shades of gray is where reality lies, not in absolutes.

SillyPUtty it is NOT your fault for "triggering" any response. This tired old drama has been going round and round on here long before you ever found the board, lol....

viva la differences


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## Dreamer (Aug 9, 2004)

Thank y'all for the kind responses. *Sillyputty, Homeskooled -- you have NOT offended me, you were reassuring in your response, and Janine and those who have PMd*

I let certain people hurt me. I provoke it I guess. I should have gotten my fears out another way, in a separate post.

Thanks all of you. Forgive my outburst.  
L,
D 8) 
*Homeskooled, I am slated for a CAT scan.* My fear is the GP said it was possible, but we'll never know that my father DID have Parkinson's. All of these illnesses are hard to pinpoint I guess. Process of elimination. 
My father NEVER became stiff or looked in any way like Pope John Paul who just passed away. He had very major tremor of his hands. That's all I recall. But when I told this to the GP, he said, "Oh, hmmm, and wrote a referral to the neurologist.

Thanks again. Now I am crying. But it feels good. I've needed this release.


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## rainboteers (Apr 5, 2005)

Hang in there... Not much else I can say. I have been through a nuerological scare myself and it was not fun. Everything worked out and I am sure it will work out for you as well.


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## Da'Burgh (Apr 25, 2005)

Holy shit, I'm scared to death... I probably have Parkinson's. I don't know what to do. This isn't curable, right?


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## rainboteers (Apr 5, 2005)

What leads you to think you have parkinson's? (symptoms)


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## Da'Burgh (Apr 25, 2005)

I have twitches all the time...


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## rainboteers (Apr 5, 2005)

Pretty sure anxiety can do that... if your really concerned I guess go see your dr.


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## Da'Burgh (Apr 25, 2005)

I have DP?DR and always nervous all the time... I had what I think was a panic attack but I'm not even sure that's what it was because my heart wasn't even racing I just felt like my legs were going numb or becoming weak... very lightheaded at times. I took a klonopin after going without it for a few weeks like I stated in my earlier posts but I don't know if I can relate this to the withdrawl. I'm so fucking scared right now! I feel so nervous and I don't know what to do...


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## rainboteers (Apr 5, 2005)

Okay... I have read it anxiety will cause twitches (yes it can also be other things), BUT read your post, you are sooo anxious. You are probably like me and have generalized anxiety disorder. You still have a lot of freaky symptoms but they don't quite fit the mold of a panic attack. Don't be scared you will be okay, this is just your anxiety making more of it. There are so many other symptoms in Parkinsons disease and you just have some twitches. See how are anxious mind work... it's like we go to the worst case scenerio and think we have it. Hang in there. You could also be having muscle spasms and that is also caused by anxiety.


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## Da'Burgh (Apr 25, 2005)

rainboteers said:


> You still have a lot of freaky symptoms but they don't quite fit the mold of a panic attack.


Yeah, that's what I'm scared about!!!


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## Da'Burgh (Apr 25, 2005)

So I remain worried...


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## Dreamer (Aug 9, 2004)

*Da'Burgh, please see my PM to you.* You do NOT have Parkinson's or essential tremor. I'd bet on it.

I'm sorry I messed up this thread. My current symptoms started long after I started my meds. My doctors feel strongly they are an essential tremor. I will keep y'all updated.

*Don't worry about having an awful illness. That comes with being overly anxious. Worrying about EVERYTHING. Been there done that. Especially when I was younger. I'm now 46 and worry about real illnesses. We all get older, LOL. Then you get too tired to worry.* 8)

Forgive,
D


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## Captain_K (Aug 22, 2004)

Yup, thats me...

Older than dirt and too tired to worry.

Does anyone want a punch in the nose?(Hey, I'm old...old people say things like that)

Sincerely,
Captain K


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## rainboteers (Apr 5, 2005)

what I meant by the freaky symptoms is that when you are anxious you don't neccessarily have the same symptoms as the next person. I am more worried I losing my mind, we all have our fears... Every thought and symptom seems to prove to us that something is wrong. It sucks and I wish I knew my way out of the cycle, BUT you do not have parkinson's disease.


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## Da'Burgh (Apr 25, 2005)

I'm just afraid of having MS or developing Parkinson's. OR any of these... I'm totally freaking out... these twitches are so scary.. I don't know what to do. I guess I'll try to stop worrying until I get the proper tests done.


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## dakotajo (Aug 10, 2004)

Dont worry da'burgh. Im sure your twitches are just a product of your anxiety. I wouldnt give it another thought.

Joe


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## Guest (May 25, 2005)

im a lil late on this but, im on klonopin but i just take it when i need it and its only .5 mg and it helps me when i need it, so thats that.


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## Guest (May 25, 2005)

Please excuse my digression away from the original topic.

Dreamer sorry to hear about your likely diagnoses of essential tremor.

If your father had it,sounds very much like this is what you have.
The neurologist will know for certain after they do all the usual tests.

Can't say I know anything about it(i'll be checking it though) .Any ailment that impedes our enjoyment of life takes some adjusting to.
It makes us feel more vulnerable.I perfectly understand your concerns.

Sorry I missed the bit about needing to have a colonoscopy.
I was adviced to have one three years ago even though the gastroenterologist diagnosed me with IBS.He wanted to rule out anything else.The reason I haven't had it is because of the anesthetic.
It's crazy but I'm not at all concerned of the idea of procedure,its the sedation that scares me.
To complicate things my doctor thinks it's diverticulitis(yes I eat a high fibre diet),so I've agreed to a barium enama instead which I'm sure will be lovely.
Personally I think it's endometriosis LOL

Let us know how you get on
Wishing all the best Dreamer


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## Dreamer (Aug 9, 2004)

Dear Shelly,

Again, sorry off Da'Burgh's topic.
Yup, spot on, on this one... another reason for my increased anxiety...
And thank you for your support.



> I was adviced to have one three years ago even though the gastroenterologist diagnosed me with IBS.He wanted to rule out anything else.The reason I haven't had it is because of the anesthetic.
> It's crazy but I'm not at all concerned of the idea of procedure,its the sedation that scares me.


Anesthesia absolutely terrifies me -- exactly the same. I'm so afraid this will exacerbate the DP/DR. But I can't worry about it. I also have IBS. I am a MESS. Definitely diagnosed by a great gastro when I was 40. He told me I was the most stressed out person he ever met, I swear it. He also said the SSRIs are the first line of treatment for that (there is serotonin in the gut). Well, I'm already on Celexa.

Also, the early logical treatment for ET are the meds I'm on. Or they should help with my anxiety. I'll say today, after going through a hideous period of anxiety over everything, I'm now less anxious overall (I don't feel anxious at least) and the tremor seems to be less again -- very, very mild -- don't really notice it. It's obvious that current stressors exacerbated it, and I have to watch for this in the future.

I've also read about Parkinson's and I don't believe my father had it, or that I have it. It has symptoms of rigitity, slowness of motion, LOSS of function aside from the tremors. I.E. again like Pope John Paul. In his last years he started looking like a stone ... that is the hallmark ... or more of a hallmark of Parkinson's. My father didn't have that, and I haven't exhibited that. Also loss of balance, etc. I don't have that.

Here's the thing. I have an incredibly high level of anxiety that is in a sense "constant" ... rumbling beneath the surface. When the anxiety increases the DP/DR kicks in full force, else the DP/DR is relatively stable.

Interesting I've been this way since a kid (save for the DP/DR until I hid about 12 or so.)

Anyway, my psychiatrist and the GP noted (as well as that first Gastro who simply did a biopsy on me) that I am on all the right meds right now to help all of my wonderful extra conditions.

It's wait and see. I feel I need to do the colonoscopy. I've also put it off and it has to be done.

Again *Da'Burgh, don't sweat the many vicious versions of anxiety that can express itself in different people in different ways. Also remember, one can have other physical illnesses ASIDE from a mental illness. The best way to do that is consult a doctor. No one here can diagnose you. No one here is an expert.*

I feel better, the last few days. I will stumble along as I have for so long. I have decided to take this as a challenge. I have no choice. And fortunately, it didn't seem to bother my father, save again, he had to stop his livelihood, but he continued in medicine as a consultant, so he did continue to work, nearly until 80! He was an expert with a mind like a steel trap at diagnosis of X-Rays of the thoracic area.

I think I'm over my terror re: all of this. I have no control over it right now.

Best,
D
Back to prepping for my move. So many darned details!


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## Guest (May 25, 2005)

I have been on Klonopin for 8 years now and DP/DR free. Until I got my hands on K, I was in a state of madness. It takes the edge off the DP/DR and lets your brain rest, remap, and stop being so defensive to the world. I sill take it, but only half a milligram a day, and I feel great. Stress still makes it hard, but thats life. I have found klonopin to be the only drug that doesnt make me feel WORSE. Forget Paxil......


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## Guest (May 25, 2005)

Just a note re: anathesia (another word I can't spell, lol). Recently, an old member of the board (screen name Faith) who I know VERY well went through back surgery - had to be knocked out totally, and needless to say was petrified...

She did FINE. At my suggestion, she talked in depth to the doctor and to the anasthetist - had a pre-surgical consult a week before with both - they knew DP, totally understood dissociation fears/phobias, etc....and were excellent with her.

She was given Versed and then profofol (very fast acting - you go under quick and out quick). I'd taken Versed myself in the hospital (and she agreed wiht me that not only is it not disturbing, you almost want to ask if you can have a little extra to take home!)

Point is, she is a massively scared former dr/dp'er who did FINE under the surgerical knife (she was a bit nuts before, however, lol).

Good news for us scaredy cats, I thought.

Peace,
Janine


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## dakotajo (Aug 10, 2004)

Hi Celeste,

I see Paxil didnt agree with you. Im curious how long you were on it before you gave up.

Joe


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## Guest (May 25, 2005)

Honestly, I was only on it for 3 days. I never give up that quick, but my pupils were blown, and I was officially hallucinating. It was horrible. I felt like Paxil was a strong LSD or something. My doctor explained this to me, and some people have very strong reactions to Paxil. I am always so afraid to put any meds in my body because I am SUPER sensitive and affected. But then, I am so internal that it's no wonder :shock:


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## dakotajo (Aug 10, 2004)

Hi Celeste,

I sort of figured that. What dose did you start at? As strange as it seems, the people that initially react the worst are probably the ones that will benefit the most from this class of drug. It gets a little complicated but there are some strong theories about it.

Joe


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## rainboteers (Apr 5, 2005)

Joe, 
I took your advice and started at 2.25 mg of Celexa, worked my way up to 20 3 days ago and I am tolerating it just fine. Not feeling any better yet, but the dr. thinks I need to get up to 40mg and then give it 4 weeks. I wanted to mention this because I had a horrible reaction to zoloft, I really thought I was losing it. I was scared to death to try again, but going slow seems to be really helping. Thanks and keeping my fingers crossed.
I also changed from rapid release xanax to extended release because it is less addictive. Hoping to get off it when and if the celexa kicks in, but right now I have to keep the edge off somehow.

celeste23, 
You may want to try again. I don't know your situation though. Along with the dp/dr I am a severely depressed, so I praying it will work for me.


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## dakotajo (Aug 10, 2004)

Im glad to hear that you are tolerating the Celexa. It may be the xanax thats sort of masking the activation anxiety. Were you taking benzos at the time you tried the Zoloft? You sound like you have a good plan. I have a feeling the Celexa will in time help you.

Joe


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## rainboteers (Apr 5, 2005)

Yes I was taking Benzos with the zoloft and I still couldn't control my anxiety. It was really scary. I am so sensitive to meds, I really think it is just working up slowly that is helping.


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## Guest (May 26, 2005)

celeste,I'm with you for me klonopin has been a life saver.
I'm not exactly feeling great as you are.However I'm glad you are doing well.
Sometimes my dp/dr is still rather viscous.

As for paxil,zoloft the lot of them,my reaction is the same.
These drugs increase my dp and anxiety ten fold.
Honestly I wish I could be like other people and just take the silly things,I think perhaps they could help.
I have a new packet of lexapro sitting in my drawer.After all of my other
experiences I'm too afraid to take it.
I feel like I have PTS from taking SSRI's lol.

Janine thanks so much for the anesthetic info.I've written down the name of that particular drug when and if I should need it.
I'm so bloody neurotic about it that recently I called several doctors to enquire if they would do a medical procedure using a local anesthetic.
One doctor said he would oblige me.He did say if I the pain was too severe he would have to put me under.
I told him that considering the procedure only lasted a few minutes,the pain couldn't be any worse than giving birth and if I endured that twice for a few hours without any drugs then..............he agreed LOL.


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## terri* (Aug 17, 2004)

To Da'Burgh...After monkeying around with zanax and valium for quite a few years which kept me better than completely freaking out, I did begin taking klonopin. As with Shelly, I found it really put a dent in my DR. I have been a 1.5 mgs for around 3 or so years and have never needed to up my dose. It has improved my quality of life, though I do feel tired frequently.

That being said, as with any drug that is addictive, I have had to battle with the thought of going off of it because I just don't want to deal with addiction and withdrawal. Noone wants to be addicted to a drug. But then I realize I have been able to have a life with the help of medication so I continue to flipflop. There is an excellant chart for withdrawing off this medicine which is what I would use. And here is my truth, if I found my DR returning to the point it was, I would not hesitate to go back on the klonopin and live my life.

It is a very personal decision to make and anyone considering it should gather all information possible.

To Celeste...I, too, am hyper sensitive to drugs and tried 14 before I started lexapro. I only took 1/2 of a 10mg. Everytime I tried to increase to 10, the side affects become more pronounced than I wanted to deal with. So for 2 years I stayed at .5. I do believe it helped with my depression...no real affect on my DR. I did a slow withdraw off of it beginning last September and ending in January. I could definitely tell I was coming off a drug but it was nothing I could not deal with.

That being said, I saw my daughter stop Paxil under doctor supervision at a slow pace and she had an awful time with those damn "zaps" and a return of some of the symptoms she had begun taking the medicine for. There are many articles out there by people who have used Paxil and consider it to be the demon from hell. Once again this shows that the usage of medication can be different for each individual. This is simply not a black and white issue.

I hope I have given the facts as I know them to be for me without putting any more fear into making a decision that is difficult enough to make.

Good luck to everyone as they make their own informed decision and choose the option that is best for them.

Most sincerely,
terri


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