Is this withdrawal or a bad disease?

[custom64]

I'm a 34 yr old male. Been on paxil for about 9 years, went down from 20mg to 10mg around May 2007. Felt fine on Paxil until the following symptoms started in September 2007:
- Visible muscle twitching all over body, neck, face, arms, legs, back
- tired legs
- pain in right leg from toes to butt
- pain in arms (mostly forearms)
- muscle cramps
- pressure in legs, especially while sitting
- feeling tipsy/losing balance while walking
around my body.
- eyes bother me for the last month-pain
- fingertips feel like wax is on the end of them
- hands freezing cold sometimes
- tons of other neurological symptoms (tingling) that have come and gone or just moved

Went off Paxil in December 2007 because I read that this might be causing my symptoms. Switched briefly to lexapro from Dec 2007 to March 2008. Been off all meds since (except Thyroid). Still have these symptoms

I can handle most of it except for the twitching and leg issues. I've thought I've had some bad neurological disease ever since this started. Have seen 3 Neurologists, Had MRIs of whole CNS, 2 EMGs, Lumbar Puncture (Spinal tap), SEPs, VEPs. Everything is normal except for the VEP was slighty slow. Neurologist said it was because of my keratoconus (an irregulay cornea surface). He also said maybe 20% of the whole population would have abnormal readings even in healthy individuals and that I show no clinical signs of any disease at all. All the neurologists say I'm normal, no diseases. When I see my muscles moving by themselves I wonder though.

Before this happened in September I would run a lot (2-3 miles a day), lift weights, snowboard/ski, 90km mtn bike races, and all sorts of fun crap. I was in great shape and have always eaten healthy. Since, I've pretty much stopped exercising/lost 20 pounds, mostly muscle because I wasn't fat. I've had a really successful career for the last 10 years but now I might quit because it's so uncomfortable to sit all day (my legs). Plus I can't concentrate on anything but my physical symptoms and it interferes with my work. I want to quit and de-stress and hope it makes me better.

I've tried yoga, qigong, chinese medicine, extreme healthy diet, vitamins, fish oil, no alchohol/smoke/caffeine/sugar...symptoms persist

If anyone is up for it, my questions are:
1) Could this be withdrawal?
2) If yes, why did it start while I was still taking 10mg paxil and why at least 3 months went by after I went down to 10mg.
3) Can symptoms get worse and new symptoms arise months after withdrawal has already started?
4) What's the "average" timeline for this hell 1/2/3yrs...forever? I was on paxil for 9 years.

I got some serious lyme disease tests yesterday, I'm hoping that's what I have. My mother had it twice and I have spent a lot of time in the woods so maybe I'll luck out and be infected...sounds funny wishing for such a thing but at least there's treatment/cure for it.

Well, thanks for those who can offer some advice, insight, knowledge, or help. I see a lot of people suffering here and if it's anything like what I'm going through I feel for you.

[kel]

custom
my withdrawl symptoms hit heavy in the 3rd month.....took my life away

[scotty]

No, this is not a bad disease....this is the effect of paxil on the brain. My son had horrendous twitching for a little over 3 years post paxil...I mean BAD twitching. He looked like he had Tourettes. Two months ago he woke up and knew that they were gone....and they have been gone since that time.

He has done ALOT of research into the cause(he's 20 now) and believes he has found the area of the brain that influences this effect and that paxil temporarily altered that area.. He is proof that it goes away, but it can take a very long time.

Lyme testing is ALWAYS a good idea in this situation. Ryan was negative for Lyme

[Johnnny off Paxil]

Ditto on that... I would add that the Elisa Lyme test will give a "flase negative, the PCR is better and the Western Blot. If you suspect Lyme, please contact a Lyme literate doctor.

Now in terms of withdrawal from Paxil, yes indeed, the "symptoms" can last a long time, think of it as a form of chemical brain trauma.

Regards, Johnny

[twon]

This is a really good post…
I have similar symptoms, and as you know I was Paxil for 14 years and have been off it for the last 2 years.
I have been reading\contributing to this site for a while, and the general consensus seems to be that the withdrawal symptoms will go away in time..

But my question is, is there anyone who’s withdrawal symptoms have completely gone away after persisting for a long time…or is it just an assumption that it will go away in time??

Can some one, who had the withdrawal symptoms go away, after a long time, share there experience..

Thanks

[Tom B]

Yeah twon, I've wondered the same, is there anyone who had long-term withdrawal and eventually did recover? I've read on here about people still having big problems after three years. Are these people just taking longer to get better, or are they perhaps permanently damaged?

I don't mean to be indelicate about anyone's plight or suffering. I feel terrible for the people going through this, but the question worries me.

[Paxilalmostkilledme]

1)to me these all sound like withdrawal.
2)w/d can start as you start to wean. you don't have to be off to have w/d
3)yes, but you get the bulk of them early in w/d
4) personally I think if you have been on Paxil for a long time you will probably have more issues. ditto for high dosage people. luckily you were on 20mg
I was on for about 6 years at 40mg - I didn't get back to normal for about a year.

[EricPaul]

If you have been checked out and your tests are all normal, then you can throw the bizarre symptoms, that the doctors can't explain or understand, which are common to drug withdrawal on the drug withdrawal effects pile. You have only been off the drug for 6 months, this is still early in recovery and recovery from psych drugs can take some time.

Below is a list of withdrawal symptoms. You will see that the symptoms that you listed are very common to the drugs that you took. These symptom may last a while once off the drug as it takes time for the brain and nervous system to heal from the use of psych drugs. You will recover as drug free time goes by, though.

http://www.prozacbacklash.com/pdf/AntiDSol_App1.pdf

[twon]

Well personally I have been off Paxil for 2 years now and for me the physical symptoms(I did not have any physical symptoms at all before I went on to Paxil…the reason was for OCD), which were mild when I was on Paxil, have magnified 100 times after coming off the drug. Plus new symptoms after coming off Paxil.
So, this is what I am not sure…is this permanent damage or would this go eventually..

Since, if it would go then of course I will try and weather it out, but if it is permanent, then some alternative treatment has to be sought

[paxilgirl]

Custom its WD and because you have been on it a very long time, you will continue to have issues with these symptoms.

They will eventually go away however.

The time frame for when you will feel completely better varies from person to person.

I was on paxil for a relatively short time (about a year) with my highest dose at 30mgs.

It took me a little more than 21/2 years before I felt 'normal'. I still contend with issues, but they are a piece of cake compared to the initial hell of WD.

Fast tapers also prolong symptoms as well.

[EricPaul]

Originally Posted by twon

Well personally I have been off Paxil for 2 years now and for me the physical symptoms(I did not have any physical symptoms at all before I went on to Paxil…the reason was for OCD), which were mild when I was on Paxil, have magnified 100 times after coming off the drug. Plus new symptoms after coming off Paxil.
So, this is what I am not sure…is this permanent damage or would this go eventually..

Since, if it would go then of course I will try and weather it out, but if it is permanent, then some alternative treatment has to be sought

I am over four years drug free and still have persisting awful symptoms that make my life difficult to live. It can take a long time for the damage of psych drugs to resolve for some of us. Perhaps my symptoms that I am left with will be permanent? I don't know, and I hope not. But, what "treatment" is there for drug damaged brains and nervous systems? More drugs that cause more damage? Been down that road already and suffer damage at over four years off, not willing, myself, to go there again to ignorant people who only have more brain damaging drugs to offer to cover the damage they have already caused. No thank you, is what I have to say about it.

[twon]

I do understand your point about not going back to taking drugs which try to hide the existing damage while in fact doing more damage…

But, I have read in several posts here of people having MRI scans of the brain with no abnormalities detected..
My point is it has not been possible to clearly show physical brain damage..
But we do have the symptoms…there is no question about that…

I was wondering if anyone have been diagnosed with any physical damage—with other organs, which might be causing these symptoms???

I am trying to see if there is any treatment I can get for “P

I am trying to see if there is any treatment I can get for “Physical Causes”(I am currently having investigations for heart issues…since I think my dizziness might be caused by blood flow issues).
So, trying to attack the problem form a different angle

[custom64]

Thanks for all the responses. It's reassuring to here the ones that say it will go away. Reading the posts of people who still have symptoms after 3-4 years is pretty scary. I can't imagine this continuing for even another year, although it can always be worse.

Yeah, I had the Western Blot 2x, ELISA, and WB on my spinal fluid. The WB showed some bands but not all the bands required for a positive Lyme diagnosis. Two days ago a lyme specialist took a large quantity of blood for some special test that subject my immune cells to lyme and co-infections. The way it reacts shows if I have it or not. It's supposed to be more accurate than the others. I'll try to post the name of the test if I can find it.

I was one healthy person before this all started in September 07. I never had any of these symptoms. The one reason I question that this is PAxil WD is because it took over 3 months from when I went down from 20mg to 10mg to feel this stuff. It appears others have had similar things though.

Thanks again everyone. I'm going to try to find some actual success stories on this site now. See how many if anyone recovered 100%.

[rdjanis]

There are many success stories, but most of what you see here are those that are suffering. After a while, those that heal move on with life, the odd member drops in occasionally to say hello.

[scotty]

Originally Posted by twon

But, I have read in several posts here of people having MRI scans of the brain with no abnormalities detected..
My point is it has not been possible to clearly show physical brain damage..
But we do have the symptoms…there is no question about that…

I was wondering if anyone have been diagnosed with any physical damage—with other organs, which might be causing these symptoms???

I am trying to see if there is any treatment I can get for “P

I am trying to see if there is any treatment I can get for “Physical Causes”(I am currently having investigations for heart issues…since I think my dizziness might be caused by blood flow issues).
So, trying to attack the problem form a different angle

The key thing you have to realize is that current diagnostic testing is not sophisticated enough to "see" the level of damage that has occurred. These drugs change the brain in areas that are not "visible" on testings, hence the ability to continue to claim that serotonin is the cause of depression. There is no way to determine IF this is the cause.
So the drug changes things that are "unseen" and the damage caused is also "unseen" on testing. So the answer by medicine is "it's all in your head" since they cannot determine the true cause.

Ryan has gone through the gamut of withdrawal problems. Pseudoparkinson, muscle twitching, hypotension/tachycardia episodes. He has had a ton of testing done, all in the normal range. But paxil effects brain function and that function is well beyond any radiological testing available to date. Yes, it does get better, but the brain is slow to heal.

[custom64]

I have another question about whether my symptoms are w/d or not. I forgot but I actually went back up to 20mg from 10mg for about 3-4 weeks at the end of November. I didn't want to be depressed when I went to my family for Thanksgiving. Anyway, my w/d symptoms didn't let up at all during this time period.

If it's w/d should the symptoms stop when the dosage is increased?

I'm so worried because lately (3-4 weeks) I notice my legs feeling worse, always tired, pain in the right, and I don't feel as balanced. When I walk and sometimes look to the side or something I feel myself lose balance. To me this seems like I'm getting worse and I stopped taking Paxil in December. At that point my GP switched me directly to Lexapro. So 20mg Paxil to 10mg Lexapro, then to 20mg Lexapro for about 2 more months. Then I tapered the Lexapro for 3 weeks. I know not long enough but I already had all the neuro symptoms so I didn't care. I'm just not seeing clearly whether this is w/d or not. It's not as cut and dry as everyone else's story here. I'll go to the neuro again this week and see what he thinks about my balance issues.

[scotty]

Custom, the switching, changing doses and rapid changes are what are getting to you. These drugs aren't specific to "depression"...they change the way the brain functions. Balance, blood pressure regulation, vision, hearing....all altered. It's this lack of information that brings out the "I must have a brain tumor" thoughts. It's not as simple as the commercials lead one to believe.
There have been millions of dollars of testing done to find a "cause" of withdrawal symptoms..all normal. There is no test for the results of ssri use, only vague symptoms that can be easily dismissed by mainstream medicine.

Oh, an increasing dose can take months to feel any effect, and in some the brain is no longer responding to even extremely high doses. That is poop out

[custom64]

Thanks scotty. That makes sense. I wish I knew exactly when I went down to 10mg from 20mg. It was sometime around March/April/May 2007. Then the symptoms started in September 07 while still on 10mg. Does that sound within the realm of w/d?

Sorry if it seems like I'm asking the same question over and over again. After 9 months of these symptoms I still shake my head in disbelief each day that this is happening to me.

[scotty]

Ryan finished weaning in May of 2004.....he got SLAMMED with symptoms in September of 2004. Yes, that time period is a very common time period for an increase in symptoms.

[custom64]

Thanks, sounds good to me. If you don't mind me asking, how long was your son on Paxil for?

[LCrawford67]

Originally Posted by rdjanis

There are many success stories, but most of what you see here are those that are suffering. After a while, those that heal move on with life, the odd member drops in occasionally to say hello.

I'd like to expand on this. The good and bad of it is, there MANY success stories and actually, you can dig back and find them in old threads. But, these people move on with their lives, rightfully so, and this becomes nothing more than a bad memory.

You also have to remember, every person's story here is different and there can be many underlying factors as to why they're still feeling so bad, so far out.

We have a member who was put on Paxil, all the while her doctor completely ignored the REAL problem, and then yanked her off of Paxil. As a result, by the time the true issue was addressed, she had to not only deal with it, but deal with he hell of Paxil w/d. As a result, she's endured over two years of suffering all due to her doctor's incompetence.

As Scotty said, the brain has a remarkable capacity to heal, it just takes longer than we'd like and longer still, if you've cold turkeyed, or tapered too quickly off of these drugs.

I was on Paxil for 10 years and tapered very slowly, over a year. As a result, my symptoms didn't interrupt my quality of life and were minimal, but I was certainly not symptom free. Four months out, there are still irrational thought issues and hormonal issues I'm dealing with. But, I do know that eventually, they will abate more and more as time goes on.

[scotty]

Originally Posted by custom64

Thanks, sounds good to me. If you don't mind me asking, how long was your son on Paxil for?

I don't mind at all. He was on Paxil for 14 months.

[Dave_1960]

Originally Posted by LCrawford67

............I was on Paxil for 10 years and tapered very slowly, over a year. As a result, my symptoms didn't interrupt my quality of life and were minimal, but I was certainly not symptom free. Four months out, there are still irrational thought issues and hormonal issues I'm dealing with. But, I do know that eventually, they will abate more and more as time goes on.

Hi Laurie.

I have noticed that many (most?) of the people here blame all of their of w/d symptoms on Paxil. I have seen a few people mention you still have to deal with your original issues, but not many. Maybe we need to emphasize this as well?

Do you not think that most of us who were put on the this drug for real mental issues like anxiety or depression, will have them come back as soon as the drug is withdrawn? (Unless they have been doing CBT.)

When we see people that were put on this drug for non mental issues have side effects like anxiety, feelings of dread etc, during and after tapering, this definitely shows that withdrawal symptoms can be identical to the symptoms most of us went on this drug for.

So I think we need to ask people why they went on the drug in the first place, and that yes, what you are feeling may be withdrawal, but if you had these same symptoms pre-paxil, then you probably need to deal with the pre-paxil issues....and ... that these same symptoms may be exagerated by withdrawal.

ErikPaul, earlier in this thread said, "But, what "treatment" is there for drug damaged brains and nervous systems?" We have to remind people (IMHO) that just because you are going through withdrawal does not mean that all of what you are feeling is brain damage and withdrawal related if you had problems with anxiety pre-paxil . If this is your case, Cognitive Behavioral Therapy (CBT) is probably a very good choice for you.

Just my two cents, I highly appreciate everyones opinion and am trying to learn here.

[safarigal]

I was on Paxil for about 5 years. I've been off for over 5 years now and am fully recovered.

It will all get better with time.

Yes, CBT may help you during withdrawal

[custom64]

Originally Posted by Dave_1960

Hi Laurie.

I have noticed that many (most?) of the people here blame all of their of w/d symptoms on Paxil. I have seen a few people mention you still have to deal with your original issues, but not many. Maybe we need to emphasize this as well?

Just my two cents, I highly appreciate everyones opinion and am trying to learn here.

Good point. In case I didn't say I was put on for depression alone. I was not for prescribed paxil for the following neurological symptoms which I now have: constant muscle fasciculations all over the body, random tingling/numbess, mild to awful foot/leg/arm pain, balance issues, constant fatigue in legs, and other pleasant neuro things. Interesting you mention this though, I've been wondering why I haven't had the common psychological symptoms either, only neuro symptoms. When these symptoms started, w/d was the last thing in the world I suspected. Explains why in the last 9 months I've spent over $15,000 ruling out neurological causes. (uggg, and probably another $10,000 on treatment, I'm afraid to add it up).