thinkpink: hello - former PPer

[thinkpink]

I really wasnt sure where to post this but my psychiatrist thinks what Im describing sounds like a peripheral neuropathy which has possibly been caused by long term paxil use. He thinks the nerve damage is starting to reveal its self with each reduction. He doesnt think its withdrawal but more a damage which needs to be confirmed by a neurologist. Any one have any knowledge about this? Pink

[manymoretodays]

What are the other possibilities that would do the damage?  I have a lot of similar stuff but at least it all comes and goes........I mean it is never a constant for months on end.  Will the final diagnosis be helpful in any way?

 

I think peripheral neuropathy could be a sign of withdrawal........and hopefully just temporary damage from what I read here.  I will however, have to google peripheral neuropathy........I'm sure I have at least that going on.

 

I wish I could find a useful Dr.  or someone who has worked with this stuff or been through it themselves........But this site is that.  It just takes awhile to figure it all out for oneself I think.  I mean I think we all have our own "correct" answers for ourselves and how to learn patience with healing and live a bit while doing it.

[btdt]

Its hard because so many of these symptoms are present in other conditions so its really hard not to worry! Btdt, im sorry you have been through so much with your symptoms, the memory problems must be pretty horrible. For me I hate this weak fatigue feeling- its so unlike me, I feel drained.I have started taking omega 3, have no idea if it will work but meant to be pretty good for heart and brain health.

Fatigue sucks had it all my friend I know it seems like I am wearing it all as a badge of honour or something believe me my plans for my life did not include any of this... no matter how it seems. You can go have it all checked I am sure the doctors will be happy to take you money and I am sure some of us have had dx of other things pn or whatever caused by the drugs while others have not had an interested doc to bother looking more to the damage caused. I have had tests up the wasoo... and some showed this or that and some drugs were tried and I reacted to them all and bottom line for me at this point is I am sick to death of tests and doctors.  If there is a pill out there that would work chances are high I can't take it anyway.  

I was just watching a video about long term damage from drugs and it seems to be becoming common knowledge that is does exist so may as well suck it up and get on with it. 

 

Nobody here can say you don't have damage and seeing a doctor or having tests is the only way you can know for sure... if they give you a drug to treat it be sure to check here with a mod before you take it as a lot of drugs can cause trouble in taper or even after wd.  It is just wiser to check and maybe start low so if you react the reaction will perhaps be less. 

peace

[Lovofsun]

the doctor said I seem to have peripheral neuropathy now begins all the tests to see what is causing it...

 

I'm only 30 years old and this wd stuff makes me feel like I'm 80! It's hard to not get down with all this crap we get put through but there are people out there that have only weeks or days to live so I'm greatful that the Lord has helped get through most the stuff that would make most give up!

 

I really hope that this peripheral neuropathy goes on its own but if not I thank the Lord I'm still here and able to see, talk and be with my children

 

I pray for us all

[Bellisimo]

I thought the same, been to doc million of times in my w/d. I was so scared of MS, parkinsson, ALS all these deseases and I really understand your fear because I was so scared for a very long time bc i never got any better and had extreme deathfear and stuff.. try to stay calm and try remind yourself it all started after you quit your medicine, thats what I did..

 

My whitdrawal started really bad after 2-4 months. I was fine before, it can be delayed in some people , doc say different tho. No doc I have been too have believed me when I asked if this could be withdrawal symtoms, in fact  I realised my docs didnt know much about this and I felt left outside society and all kind of help.. have to be strong and trust yourself.

[westcoast]

I am having something like head drops again since yesterday. It is bad timing. I a. Working on a database but everytime i open it I feel like I am falling asleep. My eyes want to close. Having it now too...

[btdt]

I hate it have that too... to me head drops are complete loss of control of the neck it hits the chest bam unexpected and it stays there nothing you can do will bring it back up just time rest.  I sometimes try to force myself beyond what my body wants to do as we don't always agree... it seems your body does not want to work on the data base it wants to rest.  You can fight it if you want but in my experience it will present a bigger bill if you ignore it... best to take a rest at least some of the times you feel this way.  If I ignore it I will generally just collapse in a lump in bed. 

[Petunia]

thinkpink,

I moved the topic you started in the symptoms forum to your introduction thread here because it was related to your own situation specifically. Please use this thread to track progress, write about symptoms, ask questions and communicate with the community, add to it whenever you want.

[thinkpink]

Hi all- just wanted to write a little update to say that I saw a neurologist and had both an MRI head scan and nerve conduction study to test for nerve damage. Everything came back normal. Obviously this is reassuring in one way because it rules out any 'structural' damage so I think at this point I have to conclude it is all somehow drug related. Neurologist says the tingling is probably caused by chemical changes in the brain- the drug reduction probably sending things a bit all over the place. He also mentioned about some symptoms possibly being connected to migraine so he has suggested trying a med to treat those symptoms so we'll see.

[Altostrata]

I would be very, very careful about taking drugs for migraine if you're still dealing with withdrawal syndrome -- particularly if you are not incapacitated by migraine.

[btdt]

Hi all- just wanted to write a little update to say that I saw a neurologist and had both an MRI head scan and nerve conduction study to test for nerve damage. Everything came back normal. Obviously this is reassuring in one way because it rules out any 'structural' damage so I think at this point I have to conclude it is all somehow drug related. Neurologist says the tingling is probably caused by chemical changes in the brain- the drug reduction probably sending things a bit all over the place. He also mentioned about some symptoms possibly being connected to migraine so he has suggested trying a med to treat those symptoms so we'll see.

What drug did he suggest to treat the migraine... 

Be very careful a lot of drug for migraine CANNOT be taken with srri type drugs. Look up all drugs for side effects and interactions then come back and talk about it.

 

" He also mentioned about some symptoms possibly being connected to migraine so he has suggested trying a med to treat those symptoms so we'll see."

What symptoms you have is connected to migraine... ask him to spell it out so you understand better as this starting to sound odd to me. I have had every sort of migraine possible for years now...this may be new.. what symptoms? 

 

If there is something new ...symptoms newly related to migraine I would like to know what they are please tell me. 

peace B

[thinkpink]

Hi Alto and Btdt, thanks for your replies. Ive actually spoken with my psychiatrist and he think all these symptoms are connected to the paxil reduction and he admitted that he doesn't know what causing the tingling or numbness or why it happens but he said an anti migraine drug is unlikely to help so for now Im putting that idea to the side and focusing on trying to wean off this damn paxil! Btdt,the symptoms neurologist thought could be migraine related were the tingling and numbness and the off balance feeling. As a teen I had very severe migraine and experienced lots of these neuro symptoms along with a massive headache. I think neurologist was trying to suggest that the serotonin changes in my brain might be causing a migraine type symptom but yes you are quite right about the med- it was a betablocker he suggested and he even admitted it may not be appropriate whilst my nervous system is healing so basically Ive got to try and wait this one out.

[thinkpink]

The other thing Im trying is a split dose of paxil- so one dose in the eve and one in the morning. It may help the drug stay in my system a little longer as I always take my dose before bedtime so its possible that by the time I wake in the morning most of the drug has washed out which might go someway to explain current symptoms. Psydoc has been pretty good- he thinks splitting the dose is a good idea, just to try it out but Ive got to report back what happens. It may not change things but its a little experiment more than anything else to see if it could help.

[ladybug99]

Hi Think pink. I have the tingling too. Mine feels like a burning tingling. It's in both arms and all over my torso. It's especially bad the moment i wake up. During the day it feels more like a numb tingling. So bizzare. Two years ago i stopped a benzo (dr had me go off way too fast) and the same tingling stuff happened. I was feeling much better this past April, so decided to switch from paxil to liquid prozac. All hell broke loose! The burning tingling stuff started up...but really bad! I still have it. 5 weeks ago i switched back to the paxil, but the damage was done, I'm afraid. So now i have to sit tight and wait to stabilize. I just wanted to let you know you're not alone in this. My guess is that your tingling has everything to do with the withdrawal. Especially since your tests came back normal.

 

You're doing great...getting from 20 mg down to 8! That's wonderful! You'll get there. You're way ahead of me! I reinstated at 7.5mg from 20. I'll have to stabilize, which i think is going to take at least 7 or 8 mos. Could be longer! Urgg. Better that we're getting off the drug than never knowing how damaging this stuff can be and stay on it for life...

 

Hugs,

Ladybug99

[thinkpink]

Hey Ladybug 99, how is your taper going now? Are you holding at 7.5? Hows that going? Thanks for sharing your thoughts- the tingling and burning is so strange- I get that a lot all over my body, in my face sometimes and then arms and feet, its very strange.  Thank you for your kind words, I am hoping to try another reduction soon but am so fearful- it really is the most horrible experience isnt it? Keep in touch, would be interested to hear how you go with your taper :-) 

[ladybug99]

Hi thinkpink! How are you doing?

My burning and tingling has calmed down quite a bit this past week! Yippee!!! Still there, but not as bad. I can't wait to start my taper, but know i must be patient. Don't want to upset the apple cart anymore than it already is.

 

Hope your feeling better. I will stay in touch. Please let me know how you're doing.

 

Hugs, Ladybug99 ????

[thinkpink]

Im really hoping someone who has experienced similar may be able to offer some words of comfort- I am having an awful time with intrusive/compulsive thoughts, extreme panic and anxiety. I have always been agrophobic since a teen avoiding specifically lifts, planes and the underground because of panic but suddenly over the last few months my anxiety has gone off the chart! Im talking about the "am I slowly losing my sanity here" kinda anxiety. I havw never had an issue with driving or motorways. I love driving, I have driven up and down the country countless times and yet recently ive had horrific impulsive thoughts/ panic attacks whilst driving on the motorway. I actually avoided the motorway on my way home from work today before turning back arounf and forcing myself to drive on the motorway! Anxiety has so much of my life already, I cant let it affect my driving. I am so confused about where this has come from? Like I say I have never been afraid in this situation before. The thoughts are so frightening - I feel like im going to totally flip out / loose control and stop my car and run into oncoming traffic. It my head its like a scene from a horror movie. I panic that the next junction isnt for miles and I wont be able to leave the motorway. This sounds crazy but i actually picture myself pulling up on the side of the carriageway and running into the buses just to get off the damn road! Its sounds kinda funny but its terrifying. I really am afraid im going to loose control and do something I have no control over. I am so afraid of these thoughts, am praying someone can offer some advice? I have to make a three hour car trip tomorrow I have diazepam just in case but that can make people drowsy so best not to take whilst driving. I cant believe this is happening, does panic get worse on weaning paxil?

[Petunia]

I'm sorry this is happening thinkpink,

Panic and intrusive thoughts are both common withdrawal symptoms. I'm thinking perhaps you need to hold for a while and slow your taper. What dose are you at now?

 

Its important to taper slowly as the dose gets lower. What we recommend is a taper that's based on a percentage of your current dose not of your original dose. See:

 

 http://survivinganti...concentration/ 

 

Also see our topic on micro-tapers Micro-taper instead of 10% or 5% decreases

 

I hope your car trip went well.

[thinkpink]

Hi Petunia, thanks for your reply. I have been at my current dose for a long time- over 6 months in fact. Ive had a lot going on thid year plus lots of unpleasant physical symptoms from withdrawal so I decided to hold at current dose (8.6mg) thanks for your advice about the taper, yes I have been cutting the 10% from my current dose each time. Am hoping to do a drop soon, fedl bad that I haven't done one at all this year yet!

[JanCarol]

Hey Pink - are you still around?

 

How are you going?  Have you done any tapers since October?

 

Your last complaint was intrusive thoughts; we call them Neuro-emotion and they are part of the healing process.

 

When you get new symptoms, it is a good practice to tell yourself "this is a new symptom of withdrawal," and realize that the system in question (temperature regulation, pins-and-needles nerves, fatigue, neuro-emotions, etc.) is healing, it's "trying out new things," but like a baby snake, it doesn't know appropriate levels yet.

 

You see, a baby snake is more dangerous than an adult.  Adult snakes know exactly how much venom is needed for the desired effect, and will rarely inject more than it needs to.  But a baby snake is just terrified, brand new, and so injects its whole load of venom when it bites.

 

Baby neurons are like baby snakes - they don't know what is "too much."  The good news is, as they mature, they learn and self regulate.

 

I hope you see the sun today - please let us know how you are going?

[thinkpink]

Hi everyone, 

 

Its been a really long time since I visited this site- Im still tapering real slow!! I need to update my signature, Its outdated, Im on a really low dose now. 

 

The past 6 months my mental health has taken a real turn, I feel awful much of the time, often low mood and sadness but more disturbing increased panic, anxiety and fear. Having a diagnosed anxiety disorder I am used to feeling fearful but this is fear on a whole new level. Its like my nervous system is on a hair trigger. I am incredibly jumpy, I startle easily I feel frightened. Ive noticed recently that I often don't feel safe anymore- even just walking down the street I feel exposed and vulnerable like I need to get home & crawl in bed and just be safe. I even struggle at home because I feel so anxious the whole time- for example you know when you watch a scary movie and then you're in the house alone expecting something to jump out on you thats how I feel the whole time. 

 

I do worry about my sanity sometimes because Im afraid Im heading towards some kind of psychosis or break with reality. I am pretty good at understanding my thoughts (have good awareness) but this level of fear is so disturbing too me. I have really vile and unpleasant thoughts and I feel like Im about to die. The thoughts have been so upsetting they have preventing me from doing normal things like driving on the motorway ( I used to do this all the time) and I just feel so afraid. Im wondering if anyone can relate to any of this? I guess I just needed to check in because Im feeling really alone again with all this wondering if I will ever feel the same again. I just don't feel myself, its like Im a different person at the moment. I will update my taper schedule, I am on liquid paxil & have been going really slow. 

[Lakelander82]

Yes I have had this sense of hyper-vigilance to varying degrees, ranging from very severe a few years ago to very mild nowadays. When I was at my worst even the sound of leaves rattling or tree branches swaying in the wind was enough to make me “jump” internally.  I guess it’s all down to the nervous system being in a state of flux because of tapering. The best thing to do, even though it is hard, is to acknowledge it but invest no time or energy thinking or worrying about it. Ruminating over the problem will only exacerbate it. It will resolve of its own accord when your nervous system settles down. 

[thinkpink]

Thank you Lakelander that sounds like good advice. You are right in that rumination makes it worse. I think Im fearful my nervous system will never recover from this, this has been ongoing for a little while now. Just have to have faith that with time and patience this will get better.

[powerback]

Hi TP ,Go through your diet and lifestyle with a fine tooth comb and weed out what could be stressing your symptoms ,I sadly can relate to everything you have written . 

[ChessieCat]

1 hour ago, thinkpink said:

I need to update my signature, Its outdated, Im on a really low dose now. 

 

This link takes you straight to your signature.  Remember to click Save:  Account Settings – Create or Edit a signature

[thinkpink]

Thank you Power back,  Im sorry to hear you experienced similar symptoms. I actually tested positive on a blood test recently for Celiac disease so Im waiting on some further tests, my doctor thinks it might be gut damage by the SSRI rather than true celiac but we shall wait and see. obviously I don't want to be eating gluten in my diet if this is making things worse!

[powerback]

2 minutes ago, thinkpink said:

Thank you Power back,  Im sorry to hear you experienced similar symptoms. I actually tested positive on a blood test recently for Celiac disease so Im waiting on some further tests, my doctor thinks it might be gut damage by the SSRI rather than true celiac but we shall wait and see. obviously I don't want to be eating gluten in my diet if this is making things worse!

Your welcome ,go very strict with no gluten hopefully it quells some of your symptoms ,do some reading up on it because there can be gluten in things you wouldn't imagine

I like this doctor tom guy ..

the second video is just taken from youtube also .

 

[thinkpink]

Great thank you power bank- I will check out the video. Ive read quite a bit recently about the gut/ brain link & how gluten can affect mental health. I have been toying with the idea of giving up Gluten, but want to wait for confirmation of a diagnosis before I proceed. Thank you for sharing this with me- it is definitely food for thought (if you'll excuse the pun :-) )

[powerback]

5 minutes ago, thinkpink said:

Great thank you power bank- I will check out the video. Ive read quite a bit recently about the gut/ brain link & how gluten can affect mental health. I have been toying with the idea of giving up Gluten, but want to wait for confirmation of a diagnosis before I proceed. Thank you for sharing this with me- it is definitely food for thought (if you'll excuse the pun :-) )

Nice pun  .

Take care .

[brassmonkey]

Hi Thinkpink-- thank you for dropping in for an update.  I'm sorry to hear that your taper is treating you so rough ATM.  It looks like you've been doing all the right things and doing a good taper.  It might be possible that it's time to take a break from tapering, give yourself an extra several months for things to settle down before tapering any further.  The lower doses on Seroxat are known to be tricky to get through, with the problems starting at around (you guessed it) 3.2mgai.  A lot more patience and perseverance are called for to get through them.  Things tend to clear up a lot when a person breaks below 1.5mgai.  I recall fear, anxiety and anger all taking a big jump right around the 3mgai mark.

 

Might I suggest that after taking a break that you resume your taper with a modified Brassmonkey Slide.  Modified in that you do 2.5% every two weeks and then an additional 4 week hold.  I'm suggesting this modification because you seem comfortable with a longer time between tapers.  Doing the smaller drops will help reduce the intensity of the symptoms from each drop and may make things a lot more comfortable.

 

There is a very good thread on Dealing with Emotional Spirals that might be worth your taking a look at too. 

Dealing With Emotional Spirals

Please stick around for a while, we have a lot of support here and would like to see you make even more progress.

 

Brassmonkey

[thinkpink]

Hi all, alologies if Ive written this post in the wrong place, I just wanted to check in as its been a while and Im struggling like hell. Im on less than 1mg now of paxil/ seroxat. Its literally taken years with the liquid to get to this point and Im holding my taper now because I feel really awful. I feel like Im experiencing a huge depression- deep sadness, depersonalisation and inability to think straight. The past two months ive had tinnitus which I find quite distressing and also a tingling sensation in my ankles. Im finding it hard lately because so much is going on. I feel really disconnected (like im.not really here) my panic is off the chart and even every day stuff has become difficult due to the overwhelming fear I now experience. Its hard because its times like this when I doubt my sanity and worry something else is wrong. I know withdrawal can throw up all kinds of symptoms which overlap with other disorders. I just dont feel myself, I feel incredibly low, no motivation to do anything and my sense of self feels altered somehow. Also my memory is dreadful lately. Sorry for such a down beat post Im just quite lonely & fearful now and Im really hoping in time things will get better. I dont want to see my doctor because Im worried they will try and prescribe me something else. I dont really have a plan, but im holding at this dose for the foreseeable future. Im trying things like aromatherapy and mag baths but its the depression which really scares me. 

[WantoffVen]

Hi Think,

 

I'm so sorry to hear how hard things are for you right now. Are you able to cry? Might sound silly, but I always feel better when I can cry. But even so at least know I care as well as many on this site. Hang in there.

[thinkpink]

Thank you for your reply Wantoffven, thanks for taking time to respond. yes I do cry perhaps a bit too much. I cried at the weekend when a friend upset me, it was something small really but I cried most of the day, I know thats not a normal healthy reaction. Small things seem to upset me a lot (another sign that things arent quite right) but I guess at least Im able to cry so I know Im not totally numb. 

[Altostrata]

Hello, thinkpink. It has been a long haul, hasn't it?

 

When was the last time you reduced Paxil? It sounds like you need a bit of an updose.

 

Please click the big Follow button at the top right of this thread to get notifications about additions to this topic.

[thinkpink]

Hi Altostrata, yes its been an incredibly slow journey and its very hard when you feel theres no end in sight. I last reduced Paxil back in August. I realised afterwards that the cut I made was actually a little high so that may be part of it. The oral syringe I was using was too big really so Ive brought a 1ml syringe to help with the smaller drops.(although Im planning a longer hold for now) The tinnitus seems really odd -  do we know why this happens? Its almost like im over sensitised somehow. 

 

I do worry that something else may be going on because the depression and anxiety is so bad but if I go to my doc I may end up with new diagnosis & more meds.

[thinkpink]

Hi there- forgive my ignorance (I am new to trying supplements) and I wondered if anyone could tell me is it ok to try supplements whilst still on an SSRI or when we talk about supplements for withdrawal are we talking about supplementing AFTER we have stopped medication? Its really important for me to get clear on this.

 

I have been trying omega 3 and magnesium this past week but I am still on a  low dose Paxil (1mg)  I understand some supplements can be more activating than others so I am trying to stick with what I consider to be reasonably gentle options at the moment. 

 

Thank you.