Longroadhome: think I may be tapering Seroxat / Paxil too fast

[Longroadhome]

Got my prescription today. Chemist managed to get one of two bottles . Thank goodness. 
note to self: over order going forward !!! I don’t keep them after 4 weeks from opening 

[Longroadhome]

@ChessieCat
 

hi there 

can you please let me know the reason you are not replying to my posts. They are simple questions that I would be grateful for a reply to ? 
if there is a problem ( can’t think what it would be) would you be kind enough to tell me . 
Thank you 

[Longroadhome]

@ChessieCat

 

Longroadhome

Posted September 4, 2021

@ChessieCat

hi there I wonder if you could help? 
I have just picked up my pregabalin from the chemist and they have given me a different brand name. I was on lyrica and now I’ve been given pregabalin Ascend . Both 25mg hard capsules and assured by pharmacist there is no difference . 
however I know a change of brand can make a big difference . So would it be best to change slowly over a period of two weeks and how best to do this ? 

Or should I return to doctor for another prescription ? 
thank you 

 

Longroadhome

Posted Friday at 04:19 PM

@ChessieCat

hi there 

wonder if you can help me. I can’t get my usual supply of liquid seroxat (Paxil) Chemist can’t get supply in . 
can you please tell me my best alternative. Would it be seroxat in  tablet form  that I can mix with water . Or generic liquid  Paroxetine? 
thank you 

 

 

[Sottana]

@Longroadhomeim so happy you got your prescription filled. You’re doing amazingly well, friend. You’re getting closer and closer to being off! I’ve decided to start tapering today as my aka is just building more and more as I hold…pray for me 

[Longroadhome]

2 hours ago, Adili13 said:

@Longroadhomeim so happy you got your prescription filled. You’re doing amazingly well, friend. You’re getting closer and closer to being off! I’ve decided to start tapering today as my aka is just building more and more as I hold…pray for me 

Thank you Adili. Look into the micro tapering this may suite our better. 

[Longroadhome]

Update:

Now I’m down to a low dose of Paxil.
The floating feeling I have had for 20 months has changed in intensity. I constantly feel like I’m moving when I’m stationary. When I stand, at times I feel a force pushing my limbs in different directions. It’s difficult sitting as I constantly feel like I’m going to fall off the seat. Because I feel this constant movement, if I do move a leg when seated, my body reacts to the “sensation” movement  feeling and the “actual”  movement feeling by causing a spin effect in my head,  because it’s getting mixed signals. Unbearable .  I also have a new symptom which compounds the dizzy/floaty feeling. This is jelly legs. I feel there are no muscles or bones in my legs and it feels like they will collapse. I have the weirdest feeling in my neck, like there is a rod either side and it’s difficult to coordinate. Put the dizziness, jelly legs and stiff neck together and it makes me feel extremely unstable, like I’m swaying when I am stood still. Anxiety has ramped  up considerably, agitation/Akathisia unbearable at times as well as many other symptoms. All amplified at the lower dose.  No windows but days that are more bearable. And lying down has become better regarding the floaty boat feelings (don’t know why)  etc so I do get some relief. Up to now I have still managed to work part time. I really don’t know what drives me, but I hope and pray it continues. 
There are many  days when I long to try a pill to make the awful symptoms go away, but I never will.  There are many days when it all feels hopeless, but something drives me to continue.
I know  three things. 
1. I’ll never take any medication like this every again in my life

2. I’ll never increase either med I am on 

3. the determination I have to be free of these meds supersedes all else. 

[Longroadhome]

Symptoms I have at the moment; 

floaty boat/dizziness etc refer the first section above,  as I think this is all one symptom 

high anxiety, depression, obsessive thinking, agitation/Akathisia, jelly legs, stiff neck, very loud tinnitus, very poor hair condition with breakage (telegen effluvium) and texture (I wear a hair piece). This started at the beginning of my taper and has continued, never had before. Dry eyes, sore eyes, blurred vision, itchy skin with hands and feet too, bone, hip and joint pain, muscle pain, bursitis (at the moment in foot and hip but has been in other areas)  buzzing electric current in body, ear infections and hearing problems, pelvic pain, bladder and rectum pain, loss of bladder control, MS symptoms, numbness in toes, cog fog, nerve pain in tooth, sinus/ allergy issues. 

 

[Erell]

Hello @Longroadhome, 
I am happy to read about your determination, and I admire you very much for managing to work and keep moving forward.

I'm lucky enough not to experience too much dizziness, but I know how hard internal restlessness can be to bear.

 

How do you feel about holding after many months of tapering and now that you're at a low dose ?

Genuine question : I know too well the desire to be free, and I do not judge the strategies we put in place to survive.

 

I send you all my support ❤️ 

[Longroadhome]

Hi @Erell

Now I am at end taper with the symptoms I have,  I do not see the point in holding. My system is so sensitive it will take a very long time to stabilise.  And I have always thought that taking any amount of PaxiI, regardless of how little, will never allow my system to recover. I believe I need to eradicate Paxil completely for my body to really start the healing process. I know the whole process is different for everybody, and respect this. If holding is no good for me mentally,  with always wondering if I am making things worse, then it cannot be a good thing. I have  changed to daily micro tapering (cutting teeny weeny amounts every 3rd day) for the end part of this taper  and will be decreasing every month by .2mg until I reach 0mg. I have coped with the symptoms so far and god willing I will see it through to the end and whatever comes after. 
Thank  you so much for  your support, it means so much. I have a lot of respect for you. You also have all my support. Right back at you x

[Longroadhome]

@Erell

I forgot to add there’s also the enormous stress of not being able to get hold of liquid Paxil from the chemist. This has happened again recently and I had to go to a private chemist who eventually managed to get me one bottle (half my prescription). I now have the worry of not being able to get any more, as once opened I don’t like to use longer than 6 weeks. The lack of supply is something  to do with licensing regulations. 
I’m  now coming up to a month and the chemist still can’t get the rest of my prescription. 

[ChessieCat]

12 minutes ago, Longroadhome said:

as once opened I don’t like to use longer than 6 weeks.

 

If it is brand Paxil liquid:

 

  

On 8/4/2019 at 6:51 PM, ChessieCat said:

 

Reply I got after contacting the pharmaceutical company who manufactures product:

 

According to Dispedia/Apotex/GlaxoSmithKline:

 

Stability of product after opening - Paxil Oral Suspension

 

The product is stable until expiry date.  Store suspension at or below 25C / 77F degrees.

 

 

 

 

 

[ChessieCat]

That is the expiry date on the product.  Many liquid are dispose x amount of time after opening.

[Longroadhome]

1 minute ago, ChessieCat said:

 

If it is brand Paxil liquid:

 

  

 

 

 

 

Thank you Chessie

I thought once opened it wasn’t to be used after one month (always made mine last 6 weeks) regardless of expiry date.
It is brand Paxil GlaxSK. 
 
 

[ChessieCat]

6 minutes ago, Longroadhome said:

Thank you Chessie

I thought once opened it wasn’t to be used after one month (always made mine last 6 weeks) regardless of expiry date.
It is brand Paxil GlaxSK. 
 
 

 

See this post, which is why I contacted the manufacturer directly.

 

 

[Erell]

@Longroadhome, Oh yes, I know too well this issue since the shortage in my country.

In the future, is there a possibility of obtaining prescriptions for a higher dose?
That's what I do now: I have prescriptions for 20mg per month, so I always have advance bottles (and the expiration dates are far enough away to make it worthwhile: my advance bottles are good until 2023-2024).

Edited March 31, 2022 by Erell

[Longroadhome]

On 3/31/2022 at 9:07 AM, Erell said:

@Longroadhome, Oh yes, I know too well this issue since the shortage in my country.

In the future, is there a possibility of obtaining prescriptions for a higher dose?
That's what I do now: I have prescriptions for 20mg per month, so I always have advance bottles (and the expiration dates are far enough away to make it worthwhile: my advance bottles are good until 2023-2024).

Thank you for your reply.  

I always order two bottles, each prescription. So it’s the same as ordering for a higher dose. 
what I have to do going forward is order in advance, so that I always have a “spare”.  

[Erell]

@Longroadhome
The system is definitely not helping us, and we have to be very inventive for our health. I often feel like a chemist's apprentice in my bathroom... if someone had told me one day that I would enjoy finding a brand of syringes that suited me!

 

Keep us informed, I greatly admire your journey and your tenacity, and I am here to support you 🌼☀️

[Longroadhome]

@Erell

This  journey is taking me through some dark corridors. Never before have I seen such suffering. but never in my life have I witnessed such bravery in human beings as one’s who have dealt with,  or are dealing with WD. 
 

[Arti]

Hello @Longroadhome dont know why But today i was reading few of your last Posts 

 

On 3/30/2022 at 8:43 AM, Longroadhome said:

Symptoms I have at the moment; 

boat/dizziness etc refer the first section above,  as I think this is all one symptom 

high anxiety, depression, obsessive thinking, agitation/Akathisia, jelly legs, stiff neck, very loud tinnitus, very poor hair condition with breakage (telegen effluvium) and texture (I wear a hair piece). This started at the beginning of my taper and has continued, never had before. Dry eyes, sore eyes, blurred vision, itchy skin with hands and feet too, bone, hip and joint pain, muscle pain, bursitis (at the moment in foot and hip but has been in other areas)  buzzing electric current in body, ear infections and hearing problems, pelvic pain, bladder and rectum pain, loss of bladder control, MS symptoms, numbness in toes, cog fog, nerve pain in tooth, sinus/ allergy issues. 

 

Oh my good when i was reading this i remebered so many things that i had that are better or gone.

I think i was so confused by the drug  mix that i Couldnt recognize it. I remember this jelly legs, hair felling out, blurred vision, dizzines, itchy skin, pain in the right knee, bladder problems, pain at the solles of the feet etc.

 Innumerable sympthoms 

Some sympthoms stay some are milder some are gone. 

That some are gone i recognized Not maybe because other sympthoms are Bad enough. 

 

On 3/29/2022 at 5:44 PM, Longroadhome said:

1. I’ll never take any medication like this every again in my life

2. I’ll never increase either med I am on 

3. the determination I have to be free of these meds supersedes all else. 

Stick to your Rules. this is the right way

 

On 3/30/2022 at 10:41 AM, Longroadhome said:

And I have always thought that taking any amount of PaxiI, regardless of how little, will never allow my system to recover. I believe I need to eradicate Paxil completely for my body to really start the healing process. 

Yes i think the same 

Dont get hectic but keep going.

 

I dont know if I am in the Position to give advice. But i Would encourage you in what you Are doing

 

Greetings 

Arti 

 

 

 

[Longroadhome]

@Arti

thank you so much for your post. I have so much respect for you and it means a lot . It also makes me smile because once again this is not something you could  have done even a few months ago because you were consumed with WD. But now you are starting to venture outside the bubble to help others. This shows the intensity of focus on your symptoms is shifting. Which is  another sign of positive change.  
 

I agree not to get hectic. However I will be tapering .02mg a month. This is above the recommended 10% but at this stage in the game I don’t think going slower will make a difference to my symptoms. They have been the same all the way through  my taper. Yes they are more intense now I am lower but this could be Paxil itself. Which is notoriously difficult to taper from and especially under 5mg.  Even tapering  at this rate it is still going to take me another 7 months to be off completely from 1.4mg.  

[Longroadhome]

Just for the record. The last few days it has suddenly dawned on me each time I take my dose of Paxil, the small amount I am actually putting in my mouth. A sudden realisation that I am actually getting to the end of my taper 😉awesome. 

[Longroadhome]

I think I also have enough to  see me through, so I don’t have to order another prescription. Another awesome 😉

[Arti]

Yes this is awesome 

And when you reach zero that will be a incredible feeling of freedom

a big burden will fall away from you.

[Longroadhome]

Hi @Arti thank you for your reply

How are you ? 
Even though symptoms are relentless, I get such a buzz knowing I’m coming to the end of my taper. 

[Arti]

Hello @Longroadhome

Sorry to say but i am very Bad. I dont Wanne bring you down 

It seems that you are in an flow at  the Moment despite bad symthoms. You should use that. So maybe its better i answer later. 

Arti 

 

[Erell]

@Longroadhome, your enthusiasm is contagious !
Take good care and keep us updated ❤️

 

[Longroadhome]

2 hours ago, Erell said:

@Longroadhome, your enthusiasm is contagious !
Take good care and keep us updated ❤️

 

Thank you Erell! 

And by the way, I think you’re doing the right thing starting your taper. 
You seem to have reached the same stage as me, tapering alongside the symptoms, having become less afraid of them. Or maybe it’s  just that we are so used to them. 
 

[Longroadhome]

10 hours ago, Arti said:

Hello @Longroadhome

Sorry to say but i am very Bad. I dont Wanne bring you down 

It seems that you are in an flow at  the Moment despite bad symthoms. You should use that. So maybe its better i answer later. 

Arti 

 

I understand @Arti. Sounds like you’re  back in a wave. Just keep doing what your doing because your moving closer and closer to recovery. Even though it  doesn’t  feel like it. YOU CERTAINLY ARE 👍

[Longroadhome]

As I continue the last part of tapering from Paxil, I’m going to report symptoms and how I’m coping, in the hope that it will help others that follow behind me.

At a dose of 1.2mg I’m  finding that I can have a number of really awful days regarding intensity of symptoms. Please refer to above postings for symptom reference. We all have one symptom that we detest the most, and for me this is the floaty boat/dizziness. It’s with me 24/7. Some days this and other symptoms make every hour of the day absolutely intolerable. But, having dealt with symptoms for over 3 years, I have adapted and become more resilient. I know that in between the truly awful days I have either small periods of less intensity in the day, or at times a day where I manage the symptoms by putting them in the background and focusing on things outside of myself. 

It’s taken a long time to get to this point and I sometimes think that if I had the intensity of symptoms at the beginning of all this that I have now, then I would no doubt have been a regular at A&E. 
As it is I don’t look too far ahead. I give myself small tasks to keep my mind focused, and off me ( yes sometimes impossible.. but sometimes not). 
I look back at days where I have coped better than I thought and this gives me strength for the day ahead. 
I’ve stopped going down rabbit holes. By this I mean reading something on this site, then going off onto someone else’s thread that’s very negative. In the past this has led to days of hopelessness. 
lastly, new symptoms are hitting me. Random very intense pains in muscles, that come and then disappear . Only to reappear the next day. I put this down to my body objecting to the low amount of Paxil it’s now receiving. 
 

 

[Arti]

Hi @Longroadhome

Its good that you Report your experience of your last paroxetin Chapter. For you and for others. What you Report remember me to my first paroxetin tapper in 2018 when i failed. But dont understand me wrong i failed Not because it was impossible. I failed because i didnt know what was going on. And then i was going back to the doctors und then the disaster took its course. This wont happen to you. You know it, you are prepared.

You mentioned the Muscle pain. I had this also and Muscles weakness. 

I remember one day i was in the garden full of akathisi couldnt sit still for a second but was so weak that i was not able to pull out weeds. This seems to be over or definitely better.

And anyway i am Bad you know Im so scared that i have to living without sleep. 

What should i do others than try and Go on. 

Wish you the best for your tapper!!! And in a few Month paroxetin will be history 

 

Arti 

 

 

 

[Longroadhome]

@Arti 

I understand you’re scared sleep will never come again. I’m scared this boaty/dizziness will never leave me. How can we not think that when we have suffered this symptom so long ? 
But the truth is, it has been brought on by WD from these drugs and we have to wait until WD is over completely and see what we are left with. 
I strongly believe if we don’t mess with nature, we eat healthy, exercise, no alcohol, then  there is no reason why we shouldn’t recover completely. 
 

Three years ago I had severe hives. I was told by a specialist it would not go unless I took antihistamines. I took a few when I could not stand the constant itching a minute longer. But then I stopped and took nothing. It took just over two years but it eventually went away completely. 
 

Patience is the key. 
 

keep going. 

[Erell]

Hello @Longroadhome, 
How are you this May?

❤️

 

[Longroadhome]

7 minutes ago, Erell said:

Hello @Longroadhome, 
How are you this May?

❤️

 

Hi there @Erell

Thank you for asking. 

im going to give a detailed update towards the end of this month when I hit the 1mg mark, don’t want to jinx anything by speaking too soon. The micro tapering  is working well for me up to now. 
I’m about the same with symptoms fluctuating. It hasn’t made any difference tapering by .2mg per month, regarding intensity. 
I get very frustrated because even tapering at this rate,  its a snails pace. But part of that is because I’m starting to see the finish line ahead, and I can’t wait to get there. Patience required. 
How are you and what are your thoughts around your proposed taper?  

[Longroadhome]

@Erell@Carmie@Arti@Sottana

Staying Steady with the Power of "Don't Give Up"

Don’t give up. Things will get better. Good things will happen.

Healing and personal progress can come with ups and downs, high points where we feel encouraged, and low points where we are dejected and tempted to throw in the towel. 

But know that many others have been there before you, and they succeeded by not giving up. You can too. 

When you feel lost and confused don’t give up, and a way forward will present itself. 

When you feel as if you’ve taken a detour don’t give up, and you will be back on track before you know it.

When you feel as if you don’t have the strength to move forward don’t give up, and you will find restoration and what you need to continue.

When you feel as if nothing good can happen don’t give up, and a really beautiful improvement will show itself for you. 

Don’t give up. 

No matter what you’ve been struggling with lately don’t give up. Things will get better. Even when things seem hopeless, if you can just hang in there, it will get better. 

 

There is always a way forward. 
 

DONT. GIVE. UP.

 

[Erell]

I'm glad to read that you have found a rhythm that suits you, although the challenges are still there. 

I imagine that as the 1mg mark approaches, impatience is growing ! It's a snail's pace, but based on the testimonies of those who have gone before us on this path, it looks like you're choosing the right pace. 

I will be pleased to read your detailed update, when and if you choose to share it with us.
 Don't give up ❤️

[Longroadhome]

Update now I have tapered to 1mg of Paxil. 
 

The micro tapering is still working for me and fingers crossedI it continues to 0mg, which I hope to reach by October.
The continuous small reductions mean I do not suffer the sudden intensification of symptoms I was having with other tapering methods. 
Having said that I do have many  ongoing symptoms regardless; 

Floaty boat 24/7 intense and unrelenting for close on two years, since drop to 4.8mg, Feels like I’m constantly in motion

screaming tinnitus both ears had since WD started but much worse from 4.8mg down

anxiety from beginning of WD 

depression from beginning of WD worse from 2mg down 

very bad pain in  joints and muscles particularly since dropped under 2mg

Dry eyes , sore eyes, blurred vision from beginning of WD on and off but relentless from under 5mg

All kinds of skin problems particularly since drop under 5mg

pelvic pain on and off from beginning of WD worse under 2mg

Dry brittle hair. Hair loss ( wear a hair piece) from start of taper nearly four years ago  

irrational thinking, uncontrollable emotions particularly since drop under 2mg

loss of bladder control particularly since drop under 2mg

Akathisia / agitation on and off since drop under 5mg

problems with ears/hearing all through WD 

head pressure on and off all through WD 

muscle rigidity in neck on and off particularly under 5mg

sea/jelly legs came on very intense under 2mg

nerve pain in toes/feet/hands all through WD 

many other symptoms 

 

Something I have noticed lately while wearing a Fitbit which I have worn for years. Since the beginning of my WD my heart rate went up to over 80 BPM. Resting heart rate over 70 BPM. Sleep mainly “fair” . However the last two months my heart rate has dropped to around 60/63 BPM. Resting heart rate around 62 BPM and I’m getting many “good” recordings of sleep.

I haven’t changed anything. So I feel this is worth reporting as it means changes are happening that I may not have been aware of without the Fitbit to monitor them . Significant , I hope so. Time may tell.  
 

Before  WD my resting heart rate was always mid to low 50s (fitness fanatic)  . Sleep always good.