Eleven10: 30 months off Prozac

[joy2730]

Hi Eleven10

 

I too would like to know how you are doing.  You were going to reinstate Prozac but decided against it and was going to start lamotrigine.  You were also anxious about any reaction but also felt you had been suffering too long now.

 

How are you doing?  I am unsure of how long lamotrigine takes to work, I have forgotten.  I have taken it in the past but at a very high dose, which had to be built up gradually to avoid the SJS.  I know you were also worried about the SJS side effect.

 

If you are up to typing, it would be great to hear from you.

 

Joy

[coldturkmama]

Hoping you are doing better!

[coldturkmama]

Anyone hear from eleven10? 

[coldturkmama]

2 hours ago, FSL said:

No it would be nice to hear from her.

 

I'm a little concerned 

[joy2730]

Eleven10

 

We would love to hear from you.  If it is not working out with the lamotrigene don't feel embarrassed - really hope it is.

 

I know you felt a little SSRI like the other day and that is a concern.

 

Joy

[coldturkmama]

10 hours ago, FSL said:

Sometimes people feel they need to step away from the forum, for a while, because they can get confused or obsessed with reading all threads and different opinions. I just hope she's ok.

Yes I had to step back for a while, always comparing myself to others..but she's been so active so it concerns me a little. Hopefully all is well.

[Eleven10]

Hi Everyone,

Sorry I didnt mean to worry anyone, I locked myself out of my email and didn't see any notifications.

Thank you for your concern its touched me.

I had a very bad bout of vertigo and insomnia last week, i slept just 7 hrs in 3 days which is the worst it has been for a while, I wanted it to ease a little before trying the lamotrigine, plus the drug had to be ordered as my local chemist didn't stock it.

I took half the 5mg tablet last night, I honestly didnt feel any different but did feel quite anxious as i had earlier googled SJS and clicked on images which was a big mistake!!!

Do you think it wise to stay at 2.5mg for a few days?

 

 

[joy2730]

So glad you are OK.  If I were you I would stop googling if it is making you anxious.  If you are anxious it will be harder to see any positives to the lamatrogine.

 

I would do just a few days at the smaller dose.  SHS is unlikely but you just need to be aware of it.  You need to be aware that continuing to feel as you do has risks as well.

 

Keep us posted.  We are all routing for you.

[coldturkmama]

Glad to see you back!

[Eleven10]

Thanks coldturkmama

 

I have just read that the hormonal pill can lower levels of lamotrigine by 50% and I do take the progesterone only pill,wondering if I am going to need a slightly higher dose but will stay at the same for a week just to see. 

 

 

[joy2730]

Glad you have posted.  How are you feeling today?

 

Joy

[Eleven10]

Hi joy, 

i slept a little better but feel dizzy and off balance. I'm not going to panic and stop the drug because I suffer a lot of dizziness anyway and it's only been two days plus Iv stopped taking the pill so I think my hormones are messed up. Fingers crossed. Thank you for asking 

[Eleven10]

Hi.

iv been taking a quarter of a 5mg tablet of lamotrigine for almost a week. I thought it was helping a little but last night I only slept 3 hrs all night and had the waves of adrenaline washing over me all night. I felt on the edge of sleep but couldn't quite find it in my mind . I laid on the sofa this morning thinking I may an hour but the same thing happened, I imagined the phone ringing or the door bell going and soon as that thought came in my mind the great waves of adrenaline came. This is obviously not a new feeling Iv had it very regularly since withdrawal began and I don't think the lamotrigine is causing it or making it worse I'm just unsure if to up my dose or stay on the same. The tablets are dispersable and break easily so it's hard to get just a quarter and the rest is wasted but if I do dissolve it and quarter it can I leave it in the fridge? 

The ringing in my ears is unbearable today, I feel too exhausted to do anything but too agitated to sit still. Come on lamotrigine Iv got high hopes for you to do your stuff. 

[bubble]

I would keep the dose steady and read about windows and waves pattern of stabilisation. What helps doesn't immediately take all the sympoms away but very gradually makes things more bearable.

 

If you dissolve a pill such suspension can last in the fridge up to 4 days.

[AliG]

Hi Eleven. This is an excerpt by Alto from  http://survivingantidepressants.org/topic/3769-lamictal-lamotrigine-to-calm-pos

 

About Lamictal, here's the problem: Not many doctors know how to use Lamictal and recognize when to increase and when to decrease dosage, plus how it's affecting the withdrawal symptoms. They also don't understand the hypersensitivity issues and insist on doses that are far too high to accomplish what we want -- to support the nervous system in healing instead of inducing yet another drug-dominated state. Some people report bad reactions to doses of Lamictal that are too high.

 

For some people with a different variety of withdrawal syndrome, taking lamotrigine may not be the right approach.

 

Here are a few tips about using Lamictal that I learned from my doctor. I'm not an expert and I don't know how this would be applied to any particular person:

 

- Dosages are individual, need to be started at very low amounts, and slowly titrated up.

 

- He starts everyone out at 2mg or less. Because I was so hypersensitive, he started me on .5mg. He likes to give a dosage a try for 4 days to see how it works, get beyond initial wooziness, etc.

 

- The trick is to find exactly the right "sweet spot" for your nervous system. At one time, I started at .5mg, went up to 2.5mg, backed down again to 1mg, eventually settling at 1.07mg. In a second phase, I titrated up to 5.4mg. (I am currently tapering off.) Now, someone else's optimal dose may be 24.3mg or 38.2mg or 10.1mg.

 

- For someone with withdrawal insomnia, the "sweet spot" is a dosage at which sleep is increasing towards normal and side effects are negligible.

 

- Lamictal does increase GABA somewhat while decreasing glutamatergic transmission. However, the GABA system needs glutamate to make GABA so too much Lamictal will have a paradoxical effect -- you don't want to go too high.

 

- Signs that you're taking too much Lamictal: Queasiness or headache (or both), sleeplessness, agitation.

 

- Initial side effects can be wooziness, grogginess, sleepiness, lack of energy.

 

- To firmly establish the newly revived healthy brain patterns, expect to stay on the Lamictal for about a year. He has had patients who went off the medication and were fine, they didn't need to take it anymore

 

In severe withdrawal insomnia, deep sleep is the first to go and the last to come back. It's important because human growth hormone is secreted in deep sleep and it is physically and mentally restorative. When deep sleep returns, emotional numbing will lift.

 

 

I agree with Bubble~ I would keep the dose steady and definitely give it more time. Are you working in conjunction with a doctor on this?

[Eleven10]

Hi Ali

i will stick as I am. I have anxiety about the SJS but I'm desperate for proper sleep and calmness. 

 

Not really working with a dr but he does know a lot about withdrawal syndrome and hypersensitivitys 

 

thank you 

[Eleven10]

Hi.

im in a bit of a state. I have been taking a quarter of a 5mg tablet for a while, I thought it was helping but my mood and symptoms have dipped quite severely. Iv been extremely depressed, a very painful depression that is not new but I haven't felt it quite this bad in a while. Iv also had more pain and zero energy I literally sit around all day, it's not lack of wanting to do more I just lack the physical capability.  I don't know if to go up to 2.5 or 5. 

Iv been thinking a lot about my past prior to meds and I think I have often fantasied it was better than it was, Iv had depression since I was 18, at times it was very bad and In the winter like this I remember some very low scary times that felt similar to how I feel now. Maybe not as severe and minus the insomnia, agitation and pain which I never had and are definitely a legacy of Prozac but the mood was bad, I couldn't work and spent all my time with my parents. I did not find light or happiness or in fact independence until I was put on Prozac. That is not not say I would not go back and give everything in the world a go except Prozac but I can't help thinking I could wait years to get back to how I was before meds and it would be a very difficult isolotive life. 

 

I smashed the doors off my wardrobe this morning then kicked the whole things to pieces in anger. I sat on the floor crying hysterically. in the movies when you hit rock bottom and you do something like that someone comes and picks you up and things change, in reality I have found that I could and often do hit rock bottom everyday and no one picks you up and nothing changes, your basically on your own. 

I want and need to see improvements this year. I don't know what that means but if I'm honest I would be happy to be back on meds and functioning, I would be grateful for every single day and I know I would do good things for others my whole life 

[joy2730]

Have you discussed going back on meds with your doctor?  This is tough but you seem to be thinking your way through it.

 

Joy

[joy2730]

For what it is worth I agree with FSL.  In an ideal world everyone would be physically and mentally healthy, would have brilliant support and happy satisfying lives, and no emotional baggage but we don't live in utopia at all.  In fact most people have difficult lives with the odd bit of happiness or satisfaction, but mainly a lot of struggling and frustration.

 

In a way, if we benefit from medication, that is indeed a blessing and can reduce suffering and enable the individual to contribute to society and use their talents to the full. 

 

At the same I acknowledge all the flaws of medication, but everything in life is a risk/benefit ratio.  I think these meds are prescribed too easily, too often, with full disclosure of possible problems, in too high dosages, combined with too many others and with little patient follow up and sometimes no access to talking therapies, BUT if they rescue someone from 'the pits' then so be it.

 

It is easy to join the anti medication bandwagon and very hard to then say 'maybe I could benefit from medication after all', but it is a journey and for some people that may be the outcome. 

 

Only the individual and their doctor can come to these decisions.

[bhasski]

18 minutes ago, joy2730 said:

with full disclosure of possible problems

 

I totally disagree the "full disclosure" part.

 

20 minutes ago, joy2730 said:

It is easy to join the anti medication bandwagon and very hard to then say 'maybe I could benefit from medication after all',

 

Most of us are here after taking medication  and while all of us trusted on doctors who prescribed them.

Pardon me , but I am not talking for myself here.

 

Eleven, 

My memory is terrible as I have read your thread, but forgotten your past comments. IMO, you can see a doctor who is open to all alternatives. For drugs, it is road always there ... and sometimes we have to.chose easy path.

 

[Eleven10]

Hi all.

thank you and I agree.

 

i think I have been so low because Iv suddenly realised the situation im in and it feels futile. 

I had a very difficult life that become not only easier but very furfilled on Prozac, it had it's down sides as I was quite emotionally numb and I could not cry but overall I enjoyed life and was very healthy. The withdrawal was excruciating and drove me to almost take my life to get away from the symptoms and after 4 years I know I'm still suffering the nervous system effects but I also now recognise feelings and behaviours I had prior to medication which I wouldn't acknowledge up until now. I have a constant overwhelming feeling of guilt and heaviness in my chest it feels like a thousand tons weighing down on me, I can't make a  decision even the most simple and spend my days wandering aimlessly around my apartment. I feel too unwell to work but the guilt I feel for not being productive or providing is off the scale. All feelings I had before meds. 

 

I will speak to my dr, my ultimate ideal would be to put me in a coma for 6 weeks put me back on meds and wake me up when I feel better. Of course that's just a fantasy. 

 

Thank you for your support it's more helpful that you can imagine 

[joy2730]

So now go and reclaim your life!  Life is meant to be enjoyed and not endured, it is a gift to each of us and not to be wasted.

 

Joy

[joy2730]

Don't forget to come back and tell us of your outcome Eleven10.  This feedback is important for everyone, as I have said before, too many people just stop posting and leave so many questions unanswered.

 

Joy

[Eleven10]

I will. If it's good news I will be so happy 

[Altostrata]

On 12/27/2017 at 5:39 AM, Eleven10 said:

Hi.

im in a bit of a state. I have been taking a quarter of a 5mg tablet for a while, I thought it was helping but my mood and symptoms have dipped quite severely. Iv been extremely depressed, a very painful depression that is not new but I haven't felt it quite this bad in a while. Iv also had more pain and zero energy I literally sit around all day, it's not lack of wanting to do more I just lack the physical capability.  I don't know if to go up to 2.5 or 5. 

Iv been thinking a lot about my past prior to meds and I think I have often fantasied it was better than it was, Iv had depression since I was 18, at times it was very bad and In the winter like this I remember some very low scary times that felt similar to how I feel now. Maybe not as severe and minus the insomnia, agitation and pain which I never had and are definitely a legacy of Prozac but the mood was bad, I couldn't work and spent all my time with my parents. I did not find light or happiness or in fact independence until I was put on Prozac. That is not not say I would not go back and give everything in the world a go except Prozac but I can't help thinking I could wait years to get back to how I was before meds and it would be a very difficult isolotive life. 

 

I smashed the doors off my wardrobe this morning then kicked the whole things to pieces in anger. I sat on the floor crying hysterically. in the movies when you hit rock bottom and you do something like that someone comes and picks you up and things change, in reality I have found that I could and often do hit rock bottom everyday and no one picks you up and nothing changes, your basically on your own. 

I want and need to see improvements this year. I don't know what that means but if I'm honest I would be happy to be back on meds and functioning, I would be grateful for every single day and I know I would do good things for others my whole life 

 

When your nervous system has had a shock from withdrawal, it may take some time to settle down. A small amount of lamotrigine might help, but it will not immediately fix all the symptoms. That's not why you're taking it, it's a crutch for your own system to find its balance.

 

Likewise, taking a low dose of lamotrigine to recover from withdrawal will not solve all your emotional, psychological, or personality problems. Managing them is something you may have to learn to do on your own.

 

How are you doing now, Eleven10? If you've gone back on an antidepressant, that's unfortunate, because being patient on lamotrigine, perhaps increasing the dosage a little, might have helped.

[Eleven10]

I'm not taking an antidepressant. As much as I would like to, I'm too scared and I doubt I could stand the side effects. 

Im still taking quarter of a tablet but I don't feel any different 

[Eleven10]

On 29/01/2018 at 2:18 AM, Altostrata said:

 

How are you doing now, Eleven10? If you've gone back on an antidepressant, that's unfortunate, because being patient on lamotrigine, perhaps increasing the dosage a little, might have helped.

It wouldn't be unfortunate if it took me out of this hell hole. I'm at the point I don't care what makes me keep living.

do you think I should increase the lamotrigine? 

[Eleven10]

I'm really struggling, I don't want to live like this anymore. I'm so desperately unwell but so scared of medication I psychologically struggle to take medication. Iv been taking a tiny amount of lamotrigine but I'm too scared to increase it as I'm so scared.

iv had a chesty cough for 8 weeks, I'm on final capability for a job I can't do anymore, everyday is just torture. I feel I'm losing hope of a window. In 4 years Iv had maybe a handful of days where Iv felt I can survive. The tinnitus is so bad at the moment like a billion crickets in my ears, and I'm back to the being on the edge of panic all night, the slightest noises trip a release of panic hormones that washes over my body. Television means nothing, food is tasteless cardboard, Nothing means anything at all. I just need a glimmer of hope and I'll keep going . 

[RealMe]

2 hours ago, Eleven10 said:

Iv been taking a tiny amount of lamotrigine but I'm too scared to increase it as I'm so scared.

Hi Eleven10,  I'm so sorry you are struggling.  What is lamotrigine?  What is it for?  I'm also trying to taper off prozac (fluoxetine generic actually).  I took it for 20 years also.  When it pooped out, they put me on Abilify and Trintellix.  The withdrawal was terrible.  Right now I'm on 9mg. of fluoxetine and holding.  My depression is worse in the morning.  Anxiety builds during the day.  Tinnitus is a constant s___ storm.  I found a support group about 25 miles from me, but they won't be meeting until the end of March.  I also have dystonia and tremors.  I used to feel worse!  I hope someone here can help you and give you a glimmer of hope to keep going.  

[coldturkmama]

5 hours ago, Eleven10 said:

I'm really struggling, I don't want to live like this anymore. I'm so desperately unwell but so scared of medication I psychologically struggle to take medication. Iv been taking a tiny amount of lamotrigine but I'm too scared to increase it as I'm so scared.

iv had a chesty cough for 8 weeks, I'm on final capability for a job I can't do anymore, everyday is just torture. I feel I'm losing hope of a window. In 4 years Iv had maybe a handful of days where Iv felt I can survive. The tinnitus is so bad at the moment like a billion crickets in my ears, and I'm back to the being on the edge of panic all night, the slightest noises trip a release of panic hormones that washes over my body. Television means nothing, food is tasteless cardboard, Nothing means anything at all. I just need a glimmer of hope and I'll keep going . 

 

How long since you’ve been off everything?

could it be the lamotrigine is revving up your CNS?

I hope you are holding on to some hope, I know this isn’t easy.

[Eleven10]

Thank you for your support. 

 

Its fear of medication that is holding me back, it's not just reservation it's total terror at the thought of taking it. It took me weeks to pluck up the courage to take the tiny amount of lamotrigine. 

It's not that I don't want to take it because I'm pretty sure recovery is not going to happen without some help, t's fear of becoming more anxious and more agitated and it pushing me to end my life which I really don't want to do I just don't want to live with these daily symptoms. It's so hard because no one can make me take drugs but in a way I wish they could. I really believe I have some kind of ptsd, I can look at old photographs and the ones after withdrawal look completely different to before, and when I see 2013 or 2014 written anywhere I shudder, everything is judged before or after withdrawal. I had terrible anorexia in my teens and I can say without out a shadow of a doubt that that was preferable to life now and during withdrawal. I know I don't need to tell you guys how bad withdrawal is as many have lived it, I suppose it just helps to write it down it's almost like talking to someone who knows.

 

 

 

 

[Eleven10]

Iv got 3 nights with 2 hrs sleep. I feel terrified all night like someone or thing is coming in my room. I'm scared to close my eyes all night, I'm on high alert constantly. Then the cortisol rushes come at 6.30 every morning. It's totally insane that it's still happening after 4+ years. I genuinely don't see any point in living anymore. My quality of life is very low, I can't even watch tele much or have a conversation more that a few words. My brain is completely impaired. 

I get very very angry and smash things, I punched my wardrobe so hard I couldn't use my hand for a week. Iv never had a temper but I do remember pre meds being hyper alert a lot, not like now but definitely over alert. 

I have taken some terrible advice in waiting and waiting this out, I should have tried my hardest to get back on the Prozac 4 years ago, nobody should have been what Iv been through for so long. 

The lamotrigine is doing nothing at this dose and iv no dr to ask if to increase it, it was prescribed privately from a dr many miles away and I'm not there patient. My gp won't advise me on it. 

 

I know someone who had spect scans and they showed TBI damage but I don't have the energy to even try to get those scans on the NHS. 

 

I would gladly agree to just ten more years of life if they could be back on Prozac and physically well. 

 

This is all too much for me and I have nothing and no one to help me fix it 

 

 

[AliG]

I'm sorry Eleven that you are going through this extremely tough time. You have tried reinstating the Prozac and also the Lamotrigine, so you haven't exactly been waiting this out, the whole time but I understand that it's been so hard for you, particularly when you have had no real success with the reinstatement of Prozac or the Lamotrigine. Perhaps if you could up the dose of Lamotrigine a little? Do you think that may help?

 

Did you have any relief in symptoms after you started it?

 

Could you possibly find a new GP who is more sympathetic to your needs? The Lamotrigine does take an understanding doctor to monitor doses, carefully.

 

I had bad insomnia too, so I can empathize with your pain, including the cortisol ,which is so very difficult. I do understand but would look for a new doctor if I were you. Is that something you would contemplate?

 

Ali xx

[KT38]

I completely know the rage brain.  It's like the brain is on a different level in so much rage and heightened. You don't have any control over it as it is so separate from who we are.  You can feel it in your brain.  I will be 3 yrs off SSRIs in 2 months.  The Lamictal did nothing for that part? I'm so scared like you.  I pray this gets better for us. 

[joy2730]

MOD NOTE:  Please see following post.

 

Hi  please find a new doctor and reinstate these drugs at a therapeutic dose which will be much higher than you have been taking.  You may need ad on drugs to help with your anxiety while you do this or even in patient care.

 

Joy

 

Edited February 14, 2018 by ChessieCat
Added mod note

[ChessieCat]

On 13/02/2018 at 7:35 PM, joy2730 said:

reinstate these drugs at a therapeutic dose which will be much higher than you have been taking.

 

One of Altostrata's comments on therapeutic dose:

 

On 04/05/2016 at 9:32 AM, Altostrata said:

"Therapeutic dose" means absolutely nothing. It's an arbitrary number from the drug companies.

 

Also, if a person's CNS has been sensitised taking a "therapeutic dose" of a drug may cause issues.

 

On 13/02/2018 at 7:35 PM, joy2730 said:

You may need ad on drugs to help with your anxiety

 

It is generally better to learn and use non drug techniques rather than adding on drugs.  Adding drugs is NOT recommended by SA.  It may cause all sorts of other issues and of course that drug or drugs will need to be tapered.

 

On 13/02/2018 at 7:35 PM, joy2730 said:

You may need ad on drugs to help with your anxiety while you do this or even in patient care.

 

My personal opinion on inpatient care (and I believe there are members here who have had this happen) is that they would most likely try one drug, and if that didn't work they would try you on or add another.

 

 

There is no mention of Lamotrigine in your signature.  Please update it Account Settings – Create or Edit a signature

 

On 12/02/2018 at 10:45 PM, AliG said:

Could you possibly find a new GP who is more sympathetic to your needs? The Lamotrigine does take an understanding doctor to monitor doses, carefully.

 

This is the information about Lamictal:

 

On 04/10/2011 at 9:21 AM, Altostrata said:

Phil, you're not off Lexapro yet, is that right?

 

About Lamictal, here's the problem: Not many doctors know how to use Lamictal and recognize when to increase and when to decrease dosage, plus how it's affecting the withdrawal symptoms. They also don't understand the hypersensitivity issues and insist on doses that are far too high to accomplish what we want -- to support the nervous system in healing instead of inducing yet another drug-dominated state. Some people report bad reactions to doses of Lamictal that are too high.

 

For some people with a different variety of withdrawal syndrome, taking lamotrigine may not be the right approach.

 

Here are a few tips about using Lamictal that I learned from my doctor. I'm not an expert and I don't know how this would be applied to any particular person:

 

- Dosages are individual, need to be started at very low amounts, and slowly titrated up.

 

- He starts everyone out at 2mg or less. Because I was so hypersensitive, he started me on .5mg. He likes to give a dosage a try for 4 days to see how it works, get beyond initial wooziness, etc.

 

- The trick is to find exactly the right "sweet spot" for your nervous system. At one time, I started at .5mg, went up to 2.5mg, backed down again to 1mg, eventually settling at 1.07mg. In a second phase, I titrated up to 5.4mg. (I am currently tapering off.) Now, someone else's optimal dose may be 24.3mg or 38.2mg or 10.1mg.

 

- For someone with withdrawal insomnia, the "sweet spot" is a dosage at which sleep is increasing towards normal and side effects are negligible.

 

- Lamictal does increase GABA somewhat while decreasing glutamatergic transmission. However, the GABA system needs glutamate to make GABA so too much Lamictal will have a paradoxical effect -- you don't want to go too high.

 

- Signs that you're taking too much Lamictal: Queasiness or headache (or both), sleeplessness, agitation.

 

- Initial side effects can be wooziness, grogginess, sleepiness, lack of energy.

 

- To firmly establish the newly revived healthy brain patterns, expect to stay on the Lamictal for about a year. He has had patients who went off the medication and were fine, they didn't need to take it anymore.

 

- In severe withdrawal insomnia, deep sleep is the first to go and the last to come back. It's important because human growth hormone is secreted in deep sleep and it is physically and mentally restorative. When deep sleep returns, emotional numbing will lift.