AussieShell: Lamictal withdrawal

[KarenB]

Perhaps give it a few more days to see if it was hormonal and therefore will settle on it's own again. 

[AussieShell]

Hi everyone,

 

 I am posting on behalf of my wife (Aussie Shell) and just wanted to see if others had experienced the following with Lamotrigine withdrawal (current dose is 33mg). For that last month she has been experiencing a gradual increase in symptoms. It is related to skin itching very similar to hives/allergy to the face, neck and arms. Outwardly the skin doesn't look too affected but it can be accompanied by a burning sensation that is sometimes only partially relieved by showering the affected area.

 

There is also an unusual aspect of sensitivity to electronic devices such as PC's, mobile phones, microwave, etc. If she is in the proximity of the those devices then the symptoms flair worse (which is why I am posting on her behalf). We have read that low doses of lamotrigine can cause skin irritations and perhaps increase the histamine response. Has anyone else had symptoms like these as they reduced dosage?

 

Thanking you all in advance.

[scallywag]

Some people do experience burning sensations during withdrawal. To read others experiences and more about this symptom, please look at the discussion at this link:

Paresthesia - pins & needles, tingling and burning sensations .

[AussieShell]

Thank you for the quick response scallywag - I will check out that link straight away!

[AussieShell]

HELP PLEASE!!!

 

Hi again,

 

It;s Aussie Shell's husband again. We are having a terrible time at the moment. The histamine rashes to the face and arms are still happening and now she has excessive wind build up. if anyone has experienced the wind issue, it just makes you feel like something is terribly wrong with you and you don't know why. But then she ends up burping every 15 seconds or so for hours. Last night for instance, we didn't get to sleep until about 2:40am and have had poor/little sleep for the last 3 to 4 days. She is using polaramine occasionally to combat the histamine rashes and burning skin feelings but not sure that she doesn't end up with some rebound anxiety once it has worn off. when that happens eventually a full blown panic attack happens which is difficult to get under control. We were even up last night turning off power circuits and non essential electrical devices as she feels that they might be causing the rashes/heat sensations.

 

Like everyone, we are sure that all these symptoms are lamictal withdrawal induced but how do we manage things from  here? We are considered reinstating back to her previous dose level of 34mg and riding the unsettling feelings that occur when going back up. She did the 1mg drop down to 33mg about 4 1/2 weeks ago. Desperate times here so any advice on what to do would be most welcome.

[Hibari]

This sounds like a very tough situation and I am hoping a moderator can offer some concrete advice.   In looking at the signature above, there seems to have been a very quick wd from Lithium due to your wife's doctors advice.  I wonder if the Lamotrigine wd is being compounded by that wd as well.  

 

I am also tapering Lamotrigine and it's a very powerful drug to come off of.    I know that at times during my journey I have had to up dose a small amount when the drop I made just wasn't easing up.  It did help when I did and then I was able to start tapering again.  

 

On the website Beyond Meds there are many discussions of people's experience withdrawing from Lamotrignine and even though it can be a rough journey, people do come off of it. 

https://beyondmeds.com/lamictal-redux/

 

Wishing your wife and easier time ahead. 

[scallywag]

I thought I would check the side effects of lamotrigine (Lamictal). One of the major known adverse "side" effects of Lamictal is a skin rash. The patient information leaflet advises " You should check with your doctor immediately if any of these side effects occur when taking Lamictal. "

[AussieShell]

Just a quick response to everyone. Thank you so much fro your advice and concerns. It helps us both so much to know there are concerned people out there to converse with.

 

We are very aware of the serious rash that can occur and these are/were relatively short lived histamine/hive type breakouts as well as feelings of heat and skin tingling. My wife has always had allergy problems to dust and pollens and there are some very high conditions being happening here. Having said that, the histamine response was through the roof compared to non lamictal days.

 

We have raised the dosage back up by 0.5 to 33.5mg (2 days back) as when we last had to go back up a dose in April, the advice given was to first try a partial increase rather than the full reinstatement.

 

That advice worked well back then and it looks like it is working this time too.

 

Again, thank you to everyone, your time, care and thoughts are so so appreciated.

 

Mr Aussie Shell 

[AussieShell]

Hi everyone,

 

Aussie Shell's husband here again looking for some feedback on our current situation. After updosing to 33.5mg two weeks ago, the wd problems are persisting. We spoke with a pharmacist who gave us advice on what rate we should have been titrating down. Based on his figures, we were well in advance of where we should have been in April last year when she was at about 40mg. We had to updose in April to stabilise things back then but if we review her history since April, things really haven't been right since then. The symptoms we are contended with at the moment is debilitating anxiety, skin burning/heat sensations and digestive issues.  The anxiety is at a level where she only leaves the house twice a week to do a 5 minute drive to drop our boys at Daycare and that's pretty much it. In addition, her dependence on me being with her has ramped up so that I only get out of the house two more times a week than her (which is to pickup our boys and the boy's grandmother stays with her for my brief trip out. The skin burning/heat sensations seem to be a histamine system that is badly out of whack and is we can see that problem more prevalent on high pollen days. A heat source, say being next to a toaster, is enough to cause the burning sensation when the high pollen days are about. She is taking Polaramine 1mg (an antihistamine) to help ease the worst of those feelings. She gets some relief taking those but has to put up with being drowsy. We have considered non-drowsy antihistamines but her history shows that they can cause sleep problems after a couple of days if she persists taking them. The digestive issues are excessive wind and burping and a feeling of tightness/choking in the throat until the wind can come up. We have simplified her diet greatly to remove fats and foods that may cause digestive issues. That has had moderate success and may be gradually improving but couldn't say that for sure. The limited diet we are using is causing some weight loss though that could also be from the underlying wd anxiety.

 

We are considering raising up another 0.5mg to put her back to 34mg. There was still anxiety issues to contend with at that does but there was none of the digestive and histamine issues at that level. The anxiety level was still a challenge at 34mg but she was still able to function and get out of the house reasonably well. 

 

Our questions are around the timeframe of updosing. Have we waited long enough (2 weeks) on this dose to see any improvement? The reinstatement we did back in April caused some hyperactivity for 3 or 4 days but then everything settled down. There was no hyperactivity after doing the 0.5mg updose 2 weeks ago so we were thinking that doing the extra 0.5mg back to 34mg may be worth doing. It seems so outlandish that dropping 1mg 5 weeks ago could put us here in this world of hurt but that possible says something about how evil this drug and how the cumulative effects of going too fast 9 months ago may have come home to roost.

 

As always, thank you for your time and support.

[ChessieCat]

Hi,

 

I'm not able to answer your question but wanted you to know that the other mods are aware of the situation and hopefully one of them will get back to you very soon.

[Altostrata]

Hello, AussieShell's husband.

 

That's an unusual pharmacist, who's aware of gradual tapering requirements.

 

As you have observed a histamine connection, has your wife considered a low-histamine diet? Histamine tolerance is visualized as a bucket, when there's too much histamine from all sources, the bucket overflows and you get symptoms.

 

Foods containing histamine can contribute to this. See Histamine food intolerance

 

It could be that adverse effects from drugs have made your wife hypersensitive to some common foods to which she never reacted before. A trial of a low-histamine diet can tell fairly quickly if eliminating high-histamine foods will help.

 

Common low-histamine foods are fresh chicken, lamb, rice, zucchini, oatmeal.

[JanCarol]

Hey AussieShell - or husband - 

 

How are you?

 

Please let us know how you are going?

[AussieShell]

Hi all,

Aussie Shell’s husband here still. Sorry for my tardiness in not getting back to update you all. I am very time poor at the moment, given everything that is going on. All of your answers and concerns have been so greatly appreciated.

It’s been 7 weeks now since raising the dose back up to 33.5mg and the improvements have been slight and very gradual. The skin rashes have backed off a quite a lot but the wind trapped/choking feeling still happens at some stage just about every day. We have been using a low histamine diet to manage this as best we can but sometimes the onset of the wind problem doesn’t seem to correlate with what she has eaten i.e. the same meal can be perfectly fine one day and then cause the wind problem the next. Perhaps the digestive issues don’t relate to the actual food being consumed and is just part of a roller coaster withdrawal symptom?

 

An additional symptom that she has had since about November last year is the destabilizing of a regular 26/27 day menstrual cycle. One cycle only went for 16 days and another just went for 37 days. So things are definitely out of whack there.

 

We have been to our normal GP for blood test and everything came back normal (liver, thyroid, etc). In desperation with have just recently been to a “holistic GP” to see if they might be of assistance in quelling some of these symptoms and perhaps help manage the withdrawal process ongoing. We are going back to see her next week for blood test results but our feeling is that she is going to recommend zinc and B6 supplements and perhaps SAM-e for the histamine depending on the results. We are aware that this all emanates from the Dr Walsh methylation idea and have reservations as we think this may make matters worse. It feels a bit like we are being pigeon-holed into a patient profile that suits her treatment rather than the GP studying lamotrigine withdrawal and its effects.

 

So we are very wary about where that path is taking us and may just get copies of the blood tests for our records and run!

At this stage we feel like we are stuck. Do we risk going up in dosage again and destabilizing things further or do we hang in there and wait out what might be a long rectification by the nervous system? Or is there something in the methylation theory that is worth considering?

 

If anyone has experienced a similar situation to us then we would be very grateful for any advice that you may have.

 

Thanks you all again for your kindness and time.

[KarenB]

Good to hear from you AussieShell,

 

I can't speak to the methylation issues (hopefully someone else will be able to) but can point you to threads which may help answer some of your other questions. 

 

About periods in w/d:  http://survivingantidepressants.org/index.php?/topic/8142-pms-and-menstrual-cycle-issues-during-withdrawal/

 

About the benefits of long holds (which I totally recommend - you'll see my story in here):  http://survivingantidepressants.org/index.php?/topic/5560-can-a-long-hold-pull-you-out-of-a-taper-gone-amiss/

 

Best wishes to you and your loved one,

Karen

[AussieShell]

Thanks so much KarenB - Shell said wow an 8 month hold! Really great to hear that a long hold can only help rather than hurt. She is actually having a far better day today (and is diarising her symptoms daily etc - we are finding hormonal cycle seems to be involved too). So going to hold on this dose for now and see how things pan out. Appreciate the feedback and support.

[ChessieCat]

There is a discussion here about methylation

[AussieShell]

Thanks ChessieCat. Husband here - I had a very quick look -- interesting about the lamotrigine affecting B vitamins. That doctor suspects undermethylation is the issue.....We aren't going back to the holistic GP this week after all as we have had an accident in the family, but I suspect AussieShell may not be able to take any of the supplements anyway at the moment. the last thing we want to do is activate her.

 

We have been in touch with her old psych (no longer practicing) and he thinks she should slowly titrate back up to 40mg, which is when she was last doing ok (April last year). Anyone have thoughts on that? Although she has shown some signs of improvement, the histamine/digestion thing is a big problem. I think an updose of some sort might be in order...maybe at 0.5ml every couple of weeks until she shows improvement?

[KarenB]

In order to help us get the full pic, can you update the signature with her current dose, and any other drug changes that happened since the end Nov 2016? 

[AussieShell]

Sorry KarenB, didn't realise it was out of date (of course!)...have updated now.

[JanCarol]

Re "titrating up."

 

Psychiatrists - and often GP's too - have this idea that there is a "magic dose" that a patient/consumer (I hate both of those words) will do well on.

 

What they don't realise is that the changes - especially in Shell's case - can be treacherous tunnels, and to increase is to go back up the tunnel, and you will still have to traverse the territory again. 

 

I'm agreeing with Karen that a long hold is the way to go.  That way, when she stabilizes, she'll only have one direction to travel, and that's out, slowly, carefully.

 

It's a relief that you are taking the holistic protocol with a grain of salt.  While the lamotragine will strip B vitamins, activation is not what you want.  I've not heard of SAM-e for histamine - but it seems it's taking a role as "cure all" - even though it's strongly to be avoided in withdrawal (Ironically, holistic practitioners seem to think of it first, in antidepressant withdrawal).   

 

Your plan of "doing nothing" is actually the strongest course of action you could take.  Waiting is powerful medicine, even if it's difficult.

 

I'm glad to hear she's doing better, and please take care of yourself, too! 

[AussieShell]

Hi - AussieShell here, thanks everyone for your input and advice. I am planning to do a long hold once I can stabilise a bit but have gone up just 0.5mg to 34mg a few days ago. It has been several months of these horrible symptoms and I just can't go on like this for months and months in the hope that it passes. I am not likely to go up very much more but will review in a couple of weeks time and maybe go up another 0.5mg if increasing has offered some relief. Then I will hold for 6+ months. I am having serious fatigue at this point but figure it is probably just an adjustment to the dose so we will see. Not going to complicate matters with any supplements from the holistic GP at this point. Appreciate everyone's help and will keep you posted.

[KarenB]

Okay - hope all goes well for you (and nice to hear from you AussieShell!)  You really do deserve a break...

[AussieShell]

Thanks KarenB. Feeling much better than yesterday, so hopeful this may help! :-)

[AussieShell]

Hi everyone, hope you can help. Have held the 34.5 dose of Lamictal since March 2017. Had a bit more normality (well for me anyway!) so just didn’t do anything about it but feel it is time to start going down again. I am thinking about starting with 5% drops per month and doing it as a ‘microdose’ reduction each week eg. 0.4mls or so each week for 4 weeks. I am hoping this is a gentler way of doing it.

 

However, I know it is hard to predict but when I worked out how long it would take at this rate it is going to take 5 years! My dr wants me to come off this med completely and when I suggested a slow taper due to my sensitivities he said to go down in a large amount over only 4 weeks...of course NEVER going to do that but getting medication long long term may be a problem...I have already been tapering for 2.5 years with that long hold.

 

My question is - at the lower doses eg. 10mg or less type area is it suitable to start increasing the %? Otherwise it take 2+ years just to get off that last little bit! I certainly don’t want to cause a problem by doing it too quickly again so your advice and real world experiences are greatly appreciated. 🙂

[AussieShell]

Just wondering if anyone can help with my post from Friday? Any advice on going down in a microdose fashion and what to do at the very low doses to get off? Thanks all.

 

[Carmie]

On 6/11/2018 at 8:17 PM, AussieShell said:

Just wondering if anyone can help with my post from Friday? Any advice on going down in a microdose fashion and what to do at the very low doses to get off? Thanks all.

 

 

 

Hi Aussieshell, 

 

No, it’s not a good idea to up the percentage when you are tapering smaller doses. Sometimes the smaller doses can be the hardest. Everyone is different, but it’s NEVER a good idea to taper down by more than 10%. 

 

When i taper again i will be doing microtaoering and see and see how I go. I haven’t done it as yet. I have been doing the cut and hold and have been tapering by 4% to 5%. Im having a break from taoering for a couple of months.

 

I’ve been tapering for years and it’s going to take me many, many more years. It’s better than the alternative, tapering too quickly can really mess you up and you don’t get off them any quicker as the withdrawals will be so severe you have to wait and hold a really long time for the next taper. 

 

Slow and steady does it xxx 

[AussieShell]

Appreciate the reply Carmie, thank you.

[Carmie]

On 6/18/2018 at 8:53 PM, AussieShell said:

Appreciate the reply Carmie, thank you.

 

Hi AussieShell, 

 

How are you doing? Did you end up starting a microtaper or are you still on a long hold? I’ve been having a bit of a break from tapering myself. 

 

Please  let me know how you do with microtapering if you start it. All the best with your tapering.

 

Sending hugs🤗

 

 

 

 

[AussieShell]

Just an update - I have been continuing with the hold but feel the time is coming to start microdosing down. My period has finally returned to a regular schedule after 18 months of holding at the same dose (it went haywire from the time I started reducing until the past couple of months). Has anyone used a scale that measures in 0.001g to do this? My tablets are dilutable so currently I use a whole tablet to only get less than half of one (but they are quite a small tablet). Thought maybe a scale would help with this....

 

How are you going Carmie? Did you start micro tapering yet?

 

 

[Carmie]

On 9/9/2018 at 9:57 AM, AussieShell said:

Just an update - I have been continuing with the hold but feel the time is coming to start microdosing down. My period has finally returned to a regular schedule after 18 months of holding at the same dose (it went haywire from the time I started reducing until the past couple of months). Has anyone used a scale that measures in 0.001g to do this? My tablets are dilutable so currently I use a whole tablet to only get less than half of one (but they are quite a small tablet). Thought maybe a scale would help with this....

 

How are you going Carmie? Did you start micro tapering yet?

 

 

 

Hi AussieShell, 

 

Hope all goes well with your tapering. I changed from my tablet to a compounded formula and I’m going through withdrawals because of that. There must have been a discrepancy between the doses. I noticed that different syringes are a bit different in measurements so the measurements may have been a bit off. 

 

When i stabilize I will start tapering, I’ll have to give at least a few more weeks. 

 

Keep us updated on your tapering. 

 

Sending hugs🤗

 

 

[AussieShell]

Hi all,

 

Well I didn't commence tapering of any kind after my last post over a year ago. Things in my life have been too difficult and I couldn't face the idea of going through any withdrawals or further panic attacks (my anxiety has been debilitating for years but bad particularly since the tapering process started 4 years ago). I am not really doing any better but feel like it is time to start VERY slowly going in the right direction anyway. I was diagnosed with a Fatty liver earlier this year -it was suggested it is likely medication related, and I am concerned about what this stuff is doing to my body long term or that I will have severe issues and have to come off more quickly than I would like anyway. I am having cognitive and executive functioning issues and am now wondering whether the Lamictal is exacerbating my anxiety anyway. Would love some advice based on my history of where to go from here - I think 10% is going to be too high but I did also rush it last time and had the Lithium in the mix. Also wondering whether a gradual microtaper approach may be better for me - still at a low total % per month of the dose as the overall reduction but as a reducing daily dose instead (with some holds if or when are needed). Are there any disadvantages to this approach? Any suggestions greatly appreciated, I have well learnt my lesson and am in no hurry as such, although it would be nice to be off in a handful of years rather than many! But I get that this isn't going to be mere months and the withdrawal effects so aren't worth it.

[AussieShell]

Would really love some advice when someone has a chance...I have updated my signature 🙂 Thanks all

[Prozack]

 

I have a question for people who have been taking lamotrigine (lamictal) for years, but haven't been taking it together with antidepressiants and/or amphetamines. Or, at least, for those who has been taking lamotigine with other meds, but in lower doses. This knowledge could be useful, because, if someone takes several drugs, it's hard to say which one has the largest impact to cognitive functions.

 

You can read that lamictal is lowing metabolic activity into several regions of brain, that it cause dementia, several people are describing about their cognitive decline that happened because of lamotrigine.

 

I'm experiencing cognitive decline and my short-term memory is ***** up. And I wonder if my cognitive functions and short-term memory will come back one day...

 

So, my question is: how long did it take, until your cognitive functions and short-term memory came back? Did it even improve?

 

And! I don't recommend lamotrigine for support during withdrawal process: If you have damaged brain by any other drugs, lamotrigine will be destroy it additionally. If I look in my history, I can say s that my cognitive decline has been becoming more rapid just after I started taking lamotrigine, even I have been taking antidepressiants and amphetamines before.