cmusic: A long history and finally saying enough

[Altostrata]

Have you had any weight changes? Tests of blood sugar level?

[cmusic]

I'm still just on the Lamictal, but a day doesn't go by when I don't think about reinstating one of the SSRI's to get a little relief and try a proper taper.

 

I haven't had blood sugar levels tested, was thinking about just getting a kit and trying to monitor it myself. And I've lost 20 lbs since I went off - but most of that has to do with not being able to eat.

 

My skin literally looks like I've been tanning or sunburned except I haven't. And it's insanely sensitive to the touch, hot feeling, itchy. Lower back pain.

 

Have blood tests scheduled for cortisol and TSA, but not even sure what I would be able to do about it even if it showed low.

 

I'm getting overwhelmed. Feel like I can't make sense of anything happening to me.

[Altostrata]

Please ask your doctor to look at your blood sugar situation.

 

As for reinstating, I believe your history is one of intolerance for antidepressants. Adverse effects are dosage-related:

 

....It's pretty clear to me that SSRI's no longer work for me. Every time I increase the dose or change meds to try and help, I seem to get a month of releief then the intense anxiety and depression begins again. It's almost like I'm adapting to the meds....

....In two months we decided I needed something stronger, so we tried Effexor. I was on that for the next two years. With the Effexor, I increased the dose no less than five times - each resulted in about a month of being a little better, then another cliff.

 

So around November I wanted off Effexor and cross tapered back to Prozac because that's the recommended approach. Now trying to get off the Prozac itself, as I only felt ok for about a month.....

 

You're only off Prozac for a month??? Have your symptoms gotten worse?

 

If so, you might get liquid Prozac and reinstate a very small amount, 2mg for example. This may help take the edge off the Prozac withdrawal symptoms. You might take that for a while, then very, very gradually taper off it.

 

....Yeah a month. But here's the issue with me - most of this stuff was happening while I was still on it. It's more intense now but it wasn't like I was comfortable when taking the drug. I actually think I was somehow withdrawing while still on it, or building tolerance or whatever.

 

I tried for a long time to get to a steady state so I could feel ok and then taper off gradually. But I could never achieve that steady state and finally said enough is enough. Prior to Prozac, I had done a long cross taper from Effexor. But whatever help the Prozac offered went away quickly. My doctor wanted me on Lamictal, Seroquel, or any other dart we could throw at the board. I said I thanks but no thanks.

 

I have thought about adding back a small amount of Prozac, but unfortunately I don't think it would help. The full dose didn't even help!....

 

My guess is the full dose didn't help because you have always been intolerant of antidepressants. You have been having both adverse reactions (after a month) and withdrawal symptoms.

If your symptoms have gotten worse, that's a sign the Prozac was doing something. A higher dose might have made you worse, but a very low dose might help the withdrawal symptoms.

 

[cmusic]

Thanks. It is definitely back and forth in my mind because I was fine on then for seven years and only after I quit Prozac in 2010 did all this intolerance begin. And even during the period where I was trying to get back on, I wasn't nearly this bad physically or emotionally.

 

I know I can't be on SSRI's long term anymore - and the thought of putting them back in my system after this is nauseating. But the reinstatement idea keeps coming back because I'm desperate and just looking for a better way to taper and get off. Cold turkey is impossibly hard as we all know.

 

The Lamictal hasn't done anything so I'm going to taper off that. Maybe I'll start popping ibuprofen to just help with the physical pain of the skin sensitivity.

[Altostrata]

When did the itching start?

[cmusic]

I would say a few weeks ago. I think it got worse when I tried to go up to 25 Lamictal. I have been back down to half a pill for a few days and after talking to my doctor I'm just going to get off. I won't be tapering and I already felt horrible anxiety this morning but would rather not have it in my system. Found a few small scabby looking spots on my right leg where if was itchy. So don't want to take any chances.

 

I don't know if the overall sensitivity to touch and sun are tied to this in any way. I could barely handle a cardboard box with my hands today - it was too painful. And being in the sun for 20 minutes have me what felt like burning (I'm a darker complexion and have never had issues with sun exposure). I read that this could be tied to adrenal insufficiency (low cortisol) and this scares the living hell out of this already terrified person.

 

It was really hard enough dealing with the mental issues. But when you add these physical symptoms to the equation, it's impossible with severe anxiety to not catastrophize and panic and think you're in for a lifetime of trouble.

[Altostrata]

I agree, you should go off. Try to reduce to a quarter tablet for the last stage.

 

Don't worry about adrenal insufficiency. It's more likely you have the opposite -- good healthy adrenals making lots of anxiety hormone.

[cmusic]

Whole body feels like its on fire. Feels like hot sunburned or feverish all over but no fever. Very intense and uncomfortable. Up all night with sweats and radiating energy through arms and hands.

 

If this is neurological is it something people have seen in withdrawal? I'm beyond panic over this - and having cut off the Lamictal because of possibility if allergic stuff I can feel it even worse. I may be headed for the ER.

[Meimeiquest]

Sending good thoughts....but I have no idea the potential seriousness.

[Altostrata]

Some people do have burning skin as a withdrawal symptom.

 

But -- cmusic, can you think of any changes you made a month ago that might contribute to this?

[cmusic]

Other than the Lamictal which has been about 2 months steadily going up I would say no. But around two weeks ago I went up to 25 which could correlate to this. Maybe it set some kind of allergic reaction off? I also got what I thought was a UTI right around that time, but didn't show anything so never took any antibiotics. There has been some irritation but it had been at a steady state and seemed to be slowly going away. So I'm not sure my immune system is fighting anything because I don't even have a fever (even though I feel like I do).

 

It's a constant state of feeling flushed and sunburned. Everything feels hot and sensitive. When I read about cortisol deficiency and how hands and body can so sensitive that clothing or sheets could feel like sandpaper, I got scared. And the darkening - I've always had a dark complexion but I definitely look like middle of the summer and I haven't gotten any sun beyond 10 minutes yesterday - which felt like it was burning me (sensitivity - another thing I've never had).

 

Got in touch with doc twice. First time suggested I get off lamictal - so I did, which I think might have worsened the panic and fear. Second time he says he thinks it's panic, said I should try taking a benzo to see if the symptoms would go away. So I did. Hands are less sensitive and less radiating as anxiety has gone down, but heat and overall condition is still there. Face and body still feel like they are burning up.

 

So far I can think of.

 

Panic

Low adrenal / cortisol function

Allergic reaction from Lamictal

Shingles (not likely because not localized)

Maybe just another side effect of nervous system on overdrive trying to repair itself?

 

I've never been good at controlling my fear around this stuff. It was hard enough with the withdrawal before these things happened, now I simply cannot get it out of my mind that I'm not having a serious issue.

[laineyk]

Hi Music, havent been on this board in a short while due to the fact that after having endoscopy with biopsy I was found to have H-pylori. So have been taking tripple med therapy (14 days) I am on day 10.

 

I have the burning you describe but not all the time and it ususally happens in mornings. my burning is located mostly arms and back.

 

Can I just say that I have reinstated and I am NOT better. The margin of improvement is NOT worth it. I too take klonopin but I have also started trying to take less of it because of tolerance

 

I told my dr that after I am clear of the H-pylori then I will come off zoloft.

 

My hands tremble something awful at times during the day and my head hasnt felt right for a long time. H-pylori can cause foggy head, so we will see if that clears up or not but so far NOT

 

I feel your pain, believe me!!! My anxiety has ruled my life for over a year now with all this. I push myself to do things but almost never feel ok

 

you have been off the prozac for how long? RI doesnt always work (take me for instance) and then all the dr will say is INCREASE the dose. I just want to function without having to rely on this poison for the rest of my life

 

So with that said I just wanted to say hello and you are not alone

[Altostrata]

It could be an allergic reaction to something, even the soap you use. I guess it could be an allergic reaction to Lamictal. I'm sorry you went off so fast, it could cause anxiety rebound.

 

You should find a new doctor and have your adrenal function checked. Skin darkening is not a withdrawal symptom. Psychiatric drugs don't cure everything.

 

You also need to manage your health anxieties.

[cmusic]

You are certainly right about needing to manage health anxiety. I had that before I ever went on drugs. Thought I was making progress but now that everything is more terrifying I guess I just have trouble filtering what's a concern and what's not.

 

Doc is a good one - wasn't suggesting benzos as the cure, maybe I misrepresented. He wanted to see on a one time dose if my symptoms would be greatly reduced - indicating whether they are psychosomatic / neurological or something else.

 

I am getting adrenal / pituitary function checked. Should know in a few days.

[cmusic]

Just wanted to check in - had a really bad meeting with my Psychiatrist / Therapist. Basically I'm feeling that horrible alone desperation that manifests when people look at you like you're stubborn and sick and aren't doing the things you need to be doing to get better.

 

Discussed reinstatement - My doc actually does not think that I shouldn't be on antidepressants anymore, and said she wouldn't write me a script for them. But it's because she says they cause me to cycle. I tried to ask how that was worse than constant depression, but the conversation just got ugly. I tried to explain that the goal of reinstatement would simply to be to take the edge off while I taper. No dice. I don't even want to reinstate, I just go there when I'm in a very bad place as an option. But it looks like it isn't one anymore (at least not from this doc).

 

Lamictal is another matter. She criticizes me for not wanting to 'give it a shot'. Throw it at the wall and see if it sticks I guess. She wants me on a full dose, in the 100's of MG's. Why - because there's a chance it could help. But it also shows she doesn't believe the SSRI's caused the majority of my issues because doesn't make sense to me that Lamictal would fix that. Who knows, it could help, but even if it does, where does that leave me - on another chronic medication I can't get off - a ticking time bomb. There is no 'literature' on dependence or withdrawal from that drug - so being told that there is none. Oh and it and could cause side effects or even a gruesome skin reaction that could kill you. And it could make me psychologically worse, either directly or by worrying about being on it every day.

 

Basically the whole meeting - from start to finish - threw me into a terrible place. I'm so desperate. I'm in so much pain and find myself doubting that I'm doing the right thing every single day. I feel completely alone and without hope. I am constantly depressed and have no motivation to do anything. My anxiety is out of control over even the smallest thoughts or tasks. I constantly think about how this could just be me now and it compounds everything.

 

It's awfully hard to keep believing that this is the right path, that I can come back on my own. How do you keep believing that when you can't maintain the smallest gains, get no relief, and everyone thinks you're sick and delusional?

[FeelingAlone]

Hey Cmusic, I'm sorry you're still having such a rough time and your Dr. appt didn't go well. I'm now 8 months into my journey of being off psych meds and I'm starting to feel more and more like "me". When I was going thru what you are, I tried to keep busy and did things to take ny mind off of things. I never ever thought I'd get better and that I was making the wrong decisions, but here I am still in one piece. Are you completely off the Lamictal? Do you have a support system at all? Someone you can talk to when things are bad?

[cmusic]

Just my family and a different random therapist. My wife has been great but she's getting overwhelmed.

 

Last night I woke with what felt like a suffocating feeling, like the walls were closing in. Like I was drowning. I think it was driven my the hard truth that I'm not going to find help from doctors and I will need to do this without them. It was an intense desperation, like I'd been discarded. I somehow have to find the courage to convince myself that I can move forward alone.

[FeelingAlone]

That suffocating feeling is quite distressing, but is a part of withdrawal. I believe you do have the courage to win this battle. My best friend was my rock in this journey and I promised her that we would take a trip, my treat, to show my appreciation for her help. At times I felt hopeless and overwhelmed. Keep talking witth your therapist and wife and just know that this won't last forever. If you ever need anything, I'm always here to talk to :-)

[Altostrata]

Did you go off Lamictal? Did the itching go away?

[cmusic]

I went off Lamictal about four days ago. The burning hot feeling in my skin didn't go away. But - I'm happy I'm off the Lamictal because it wasn't doing anything for me and my options were to raise it or go off. I will be staying off. I will not be going on in the 100's of mg's like my psychiatrist wants me to.

 

I have a theory about the skin stuff. A few weeks ago I went to a holistic doc, the one who had done the test and confirmed me compound hetero for MTHFR mutation. I was given a few supplements - zinc, magnesium, and this stuff by metagenics called vessel care. I am not endorsing this stuff in any way, just wanted to post the link so people could see what it is. It has methylated forms of B6, B12, and Folate as well as a few supporting vitamins.

 

I don't know the first thing about this but the timing does correlate. And I've read that when a person starts properly using these vitamins that their immune system could kick in and cause some kind of a detox. Anyway, it feels like an immune response even though there's no fever.

 

So that's my theory. Who knows if it's true but I tried taking half a pill instead of a whole one and I seem to be a little better today.

[Altostrata]

Those are the very vitamins that cause problems for many people sensitized by withdrawal. I don't put much store in a "detox" reaction, I fear you are having a hypersensitivity reaction. Please take care. You may have reduced the wrong drug.

[cmusic]

Thanks Alto,

 

Are you referring to the magnesium and zinc or just the stuff in the vessel care? And I am fine being off Lamictal.

[Altostrata]

Vessel care. I'd cut back on that first.

[cmusic]

Hi - just looking for some encouragement. I've read countless testimonials but I keep thinking that the depression and hopelessness I'm feeling now is more severe than it should be. Every shred of my desire to live life is gone, I'm crying nonstop, I've lost all confidence and sense of self. Completely rock bottom. Not sure how I'm even moving at all.

 

And it always seems to start with intense panic in the morning, then goes to the depression.

 

I thought I understood windows and waves but maybe not - I have the same pattern most days with mornings and daytime being hell and sometimes relief at night if I'm not too desperate. The last 'window' was a week ago and only for a few hours after a day of meditation and working out.

 

I got off low dose Lamictal about a week and a half ago, but I haven't noticed much of a change either way. Got results of hormonal testing - as expected Cortisol was on the high side in the AM.

 

There doesn't seem to be any relief in sight for me. I have no idea what's 'normal' and what's too severe to continue to try and push through. Do people seriously just live with this indefinitely? How bad does the depression get?

 

Found myself reading about ECT today

[Altostrata]

I used to call the withdrawal-induced depression the "black holes." Sorry to say, this almost unimaginably intense bad feeling is "normal" for withdrawal syndrome.

 

Slow, mindful breathing can help when you hit the bad spots. You must remind yourself, these things will pass like clouds across the sky.

 

ECT does nothing for withdrawal-induced neuro-depression.

[Rhiannon]

When I was having days and symptoms similar to what you describe (in the past, during my "cold turkey" experiences) I found that walking helped. Long, slow walks in a quiet place. Also keeping a very regular schedule as much as possible. There are a lot of other lifestyle type suggestions under Symptoms and self-care, I think. What you describe sounds very familiar to me and the only kind of supplement or pill that helped and didn't aggravate things was fish oil, for me.

 

None of this "fixed" me but it did seem to alleviate things. Especially the walking--for me, anyway, walking seems to be quite effective at regulating and balancing my nervous system.

 

I agree with Alto, unfortunately this kind of intense suffering is not unusual with psych drug withdrawal.

[cmusic]

The last few days I haven't made it through. Pull everything I have together to get up in the morning, breathe, try to be with the intense panic that builds over the morning, watch it as it sickens my stomach, and then as it slowly degrades into depression which becomes intense and persistent.

 

I haven't made it through a full day of work in over a week. I was thinking about going on leave and my wife is now suffering panic at the thought of it. I have a very fortunate situation at work and if I lose it I would not be able to function in a different job. I'm worried about money and how I'm going to take care of my family if I can't work.

 

Everyone around me is telling me I can't 'let this happen' and that I need to do something about it. Meds, a cocktail of meds, high dose Lamictal, TMS, even ECT have all been thrown at me.

 

I feel like I am 'letting' my life fall apart. Because I believe meds and treatments aren't the answer. But I'm putting my family's well being in jeopardy by walking this path. If I can't work everything changes. If I can't eat everything changes.

 

Literally everything, everything has become terrifying. A thought. A sound. Having to read an email. Everything. It all shoots waves of panic and fear through me that culminate in crying hysterically. I am a complete puddle.

 

I might consider going back on Lamictal. Starting low but increasing and continuing to increase until something changes. Or, I go out of work and hope that in three months (after FMLA is done) I'm capable of returning. Or I do both.

 

Feels like checkmate. Any thoughts welcome.

[cmusic]

Spoke to doctor last night. Going to try Lamictal again. She thinks I'll ultimately need between 50 and 100 mg's. I'm not sure if this will help or make things worse. I will try to go up slowly and stop when I get to 25 with the hope that it will help a little. I read that it can both help regulate the autonomic system - or it can make anxiety and panic worse - not sure which is accurate.

 

Very scared of having to do this and not sure I even believe it will help.

[Altostrata]

If people take too much Lamictal, it can make symptoms worse.

 

I fear this bad wave is because you went off Lamictal. It may have been helping in a subtle way. I hope you aren't sensitized to it now.

 

I would go up very slowly. Ask your doctor for a prescription for the 5mg tablets.

[cmusic]

Thanks. I hope it's not the case that I'm sensitized to it. I didn't feel like it was doing much before. The wave is probably related to getting sick (not working out) and not having to be forced 'up' as much with work events like I was a few weeks ago.

 

I am male and a fast metabolizer so I want to get to some kind of helpful dose fairly quickly. I'm really hoping that I can start with 12.5 and go up in increments from there. I took a quarter of a 25 (so 6.25) before bed last night and another this morning. I know this is faster than what would be recommended here but pretty desperate to get any relief.

 

I believe my dose will be somewhere over 25. The doctor thinks it will be around 50-100 but I don't want to go anywhere near that. I am holding out hope that I can get to 25 then go up slowly and give each increase a chance. How will I know when it's 'helping'? Will there be less anxiety or depression? How will I know when I get to a place that is all I'm going to get and going up from there will worsen things?

[Altostrata]

I wouldn't assume you're a fast metabolizer of lamotrigine, but men do need a higher dose than women.

 

If I were you, I'd go up by quarter-tablets as you're doing. Give each increase a week to see what it does. A beneficial effect would be a subtle decrease in anxiety, etc. Don't expect it to eliminate symptoms right off, that takes time. More is not better, don't get overenthusiastic, if you take too much, you can get worse symptoms.

[cmusic]

Thanks again. I was tested for Effexor blood levels when I was on that and I was a fast metabolizer. But I don't know if Lamictal is processed in the same way.

[Edted]

Cmusic:

Effexor is metabolized by the liver enzyme CYP2D6. Lamictal is metabolized by glucuronic acid conjugation....completely different. Please be careful.

Regards,

Ed

[cmusic]

Thanks very much for the info - very helpful. I plan to go slowly regardless. The quarter pill a week sounds like a good plan.

[Altostrata]

Brilliantly put, Edted.

 

cmusic, please assume you're hypersensitive and go slow with lamotrigine so as not to trigger an allergic reaction. I'm worried about the itching that happened before.

[cmusic]

Could I ask you to clarify hypersensitive? I didn't know it meant I could trigger an allergic reaction more easily. I'm hugely scared of SJS and that whole thing, but I thought going slowly would make the odds if a reaction low.

 

I have had hot and sensitive skin - first because of that supplement, then because of having a cold for the last week which I still have. It's got to be tied to immune system activity.

 

But pulling the Lamictal did not make it go away (pulling the supplement - vessel care did until I got sick). I have had what I thought was some itching and hay fever like symptoms before when starting Lamictal. But I didn't think that was anything like the serious allergic reaction.

 

The problrm is I worry about everything now and can't make sense of things. I have only a shred of hope that te Lamictal will help - but if it does I need to do it. I don't know if I'm hypersensitive or not but started with 12.5 and plan on staying there a week and then going up by a quarter pill a week after.