emilie: 19 years various medication

[emilie]

Hi, i am french. I have been on multiple medication antidepressant and benzodizepine for 19 years (citalopram, effexor, deroxat, xanax, lysanxia, mirtazapine, perhaps others i don't remember for now).

Taking 2 years to slowly decreasing ml by ml.

The last treatment was mirtazapine, crushing pill and putting it in 100ml then waiting for 18minutes. Shaking and then slowly decreasing the part taken.

I have lost 20kg. My weight seem stable for the moment.

 

I come here to find if other have the same problem as i have for the moment.

 

Today is the first day i am totally free.

But i feel instable, fragile, very sensitive.

I was very sensitive to cold the last winter, it was very hard.  The last period of crisis comes with impetigo. I have cracking joint perhaps because of loss of weight. I have difficulties standing straight. My position is my  back is often vaulted, shoulders forward.

It seems i have never hunger. So i eat without hunger.

 

I have some months well. And suddently i pass month were each morning (when the sun goes down), i have sort of crisis. The typic crisis is that the sun goes down(sunset), it start with interior tremors, like waves and feel bad (sad or panic), and then diarrhea. Going to toilet to evacuate seem to calm the crisis. But it need after toilet you have nothing in the gut, all is gone in toilets. I can go to toilets multiple times before it calm.

 

I write here to know if others people have this sort of crisis when the sun goes down (sunset)?

 

I don't look at the sun, it comes inconsciently beeing outside(exterior of my home) or inside (in my home) is the same, like a clock inside the body that say "hey it is time to feel bad, a little tremor?"

Crisis comes earlier in winter than in summer. (sun goes down earlier in winter)

 

(For now, the sunset is 21:44 in my country. But symptoms often start between 19 and 20h).

 

 

 

 

 

[mammaP]

Hello Emilie, welcome to SA.  Can you tell us about the drugs you have tapered and how long you tapered mirtazepine?  

We ask all our members to fill in their signature, this helps us to understand the situation.You can find how to do that here.....

http://survivingantidepressants.org/index.php?/topic/12364-please-put-your-withdrawal-history-in-your-signature/

 

When someone has been taking many drugs over many years they can be very sick from side effects and withdrawal. This is what will be happening to you. 

Tapering for 2 years seems like a very long time but can still be too fast. I tapered one drug for a year and had withdrawal symptoms after being off for a month.

 

When we have the details of the drugs you have taken and how you tapered we will be able to help you. I am glad that you joined us, you are with friends who are all tapering or suffering the effects of the drugs so we understand. 

[emilie]

now it is ok for the signature?

 

(My memory is not very good. But i remember when i was on effexor and mirtazapine, i had already this intern tremor and diarrhea at the sunset.)

 

you say "you are with friends who are all tapering or suffering the effects of the drugs so we understand. "

 

In fact i know that withdrawal can cause symptoms even in slow tappering.

 

But what i wonder is : are there other people on which the symptoms appears mainly at sunset?

Why sunset? The more the night comes after sunset, the more i goes calm. 

It seem sunset time is important for me, i wonder if others people of the forum have this particular timing?

 

I feel like my gut flora was removed each sunset. 

 

One time i had do 7 days fasting (to see if i will have hungry, but i had not hungry after 7 days of water) (fasting absitnence of all food, only water). It was a bad period and i had crisis at sunset (tremor and diarhea) before fasting, but while fasting, i feel better, no crisis at sunset. I eat after 7 days and the first day i eated, i had the crisis that come back at sunset.

 

 

[mammaP]

Thank you Emilie.  It does look like you tapered too fast for your body to adjust. Often the last 1mg is the hardest.  I stopped effexor at 1mg and had awful withdrawal. 

It might be best for you to go back to 1mg and if it helps, keep taking that dose until you feel stable. The lower doses need to be smaller drops with longer holds between drops. Hopefully you will be able to stabilise with reinstatement. When you are stable you will be able to restart the taper. I took another 18 months to taper from the 1mg I reinstated. It can make a huge difference and help within a day or 2. 

 

What time do you take your dose of mirtazapine? Maybe the gut problem is related to the dose. 

 

Here is the topic on reinstatement. 

http://survivingantidepressants.org/index.php?/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/

 

If you have a scientific mind you might find this interesting

http://survivingantidepressants.org/index.php?/topic/6036-why-taper-paper-demonstrates-importance-of-gradual-change-in-plasma-concentration/

 

Edited July 16, 2017 by mammaP

[emilie]

no the symptoms i have, i had already them when i was full mirtazapine, at 22,5mg.  This symptoms i had already when i was on effexor.

I have never been stable even on full mirtazapine or effexor. I always had period with that crisis at sunset.

And when i talk to doctor for that, they only response was to grow treatment or change treatment.

 

I don't think i will retake 1ml because, i had the same on each level.

I had period free  and periods bad.

2 years ago, i had symptoms really bad, i thinked it was withdrawal but i had giardiase (a parasitose).

 

So i had been treated for that (with antibiotic metronidazole).

Many symptoms were removed but crisis at sunset still.

 

 

[PoetJester]

Hi emilie

 

i have symptoms with the sun too, but they are different then yours.  i stopped Zoloft and zyprexa cold turkey in 2014 and since then  , when it is cloudy i feel physically weaker and have more panic/anxiety and feelings of doom.  i am usually going without good sleep and on cloudy days, i feel like superman when he is away from the yellow sun- he loses his powers and superstrength (or what strength i have left after drug withdrawal).  it's like when i am depressed from poor sleep, the sun at least gives me some strength and when it is obscured i feel less strong. 

 

i also have the never feel hungry thing as well.  i just eat after a certain amount of time, because i know i should eat.   this has started the past year.  my stomach has become bloated and i suffer from constant constipation as well.  i think having very poor sleep is what is causing my stomach issues.  i do have diarrhea often when i do manage to go to the bathroom.

 

poetjester

 

ps.  did you have any side effects from the metronidazole treatment?  i have been asking my doctor to prescribe metronidazole for me.  i have developed horrible poop breath from drinking beer recently and i have read online that it may be caused by intestinal parasites or maybe a fungal infection and that metronidazole is one of the treatments for the poop breath. 

[emilie]

"did you have any side effects from the metronidazole treatment? " i was so bad that i don't know what was the antibiotic and what was the parasitose (giardiase).

So i don't know.

for "poop breath" perhaps you could give a try with green clay? washing mouth or drinking a little (not too much because it can worse constipation)

 

"and i suffer from constant constipation" i have not constipation. just diarrhea et the sunset. I have a good sleep. My poopbreath is good.

Thanks for having responded  superman.

[emilie]

wikipedia say about mirtazapine "Mirtazapine is the strongest antihistamine ever created" perhaps something here. i have read some people run diet with low histamine. i will think.

(i made a itch the last week at palm hand. it was insupportable. perhaps there is a link)

[emilie]

histamine diet seem to do nothing to me si i stopped it.

 

I have been 2 months ok. (just 2 crisis at evening during 2 months).

 

But now, each evening i am very very cold , i have see this : body-temperature-dysregulation-fever-chills-shivering-too-hot-too-cold/

It seem the same. 

I have very very cold, then i have tremor (i suppose the body try to upgrade my body temperature) and when tremor comes, i have diarhea.

When i have tremor, to avoid teeth problem i put a pacifier  (https://en.wikipedia.org/wiki/Pacifier) in my mouth, the time the crisis to stop. 

(pacifier sell for baby more than 18months)

I was not sure if it was real or not so i mesured my body temperature with a Forehead thermometer puting it in my front and in my palm hand to see. There is a real difference in temperature in palm hand between while crisis and after. 

After having really cold, i often have too hot.

 

I have not the problem during the day, it come at the evening when i am in resting position in a couch/sofa in front of TV for example. 

If i am inactive it comes. 

 

(For the moment, i put poultice of green clay and put it on my skin letting it for some hours. )

 

 

 

 

 

 

[Madeleine]

If you have been OK 2 months, that is great!   Maybe you are coming down with the flu? That's what happens to me sometimes when I am getting the flu, I am cold and can't warm up.   Whatever the reason, eating something very warm and hardy, like a thick stew or soup helps me really warm up.. I also find it helpful to also drink plenty of warm teas, and rest.  Hopefully you will feel better soon. 

[emilie]

No it is not flu. I have not this cold the day. It arrive only at the end of the day. I have no pain like during flu, but cold and spasms.

[emilie]

thanks ChessieCat,

ok, yesterday for the first time my crisis was different, there was something more:

my left hand come in the position of Trousseau sign of latent tetany. Just the left, not the right. I think about tetany.

The crisis come. And it does not stop. I take bicarbonate (food) with water and it calm.

Then i go to a new doctor (i am in a new town). i don't speak about withdrawal. I think he will propose me some AD or benzo  if i do.

I say to him the diarrhea and the crisis, the cold, the tremor.

He says diarrhea remove my body from minerals and i am lacking of them.

So i have to stop diarrhea with smecta and tiorfan.

I have found 3 things that calm crisis temporary:

*smecta (it seem really good)

*orocal D3

*bicarbonate

*breathing fresh cold air  (like 11°C) can calm teporary myself too

 

This morning i have done real tetany with the two hands with thumbs coming in the palm of hand. The crisis calm with orocal.

 

It is really difficult more me. And i think, the more difficult in long term will be to manage diarhea and minerals needs. I don't know how.

 

Edited November 11, 2017 by ChessieCat
moved from body temperature dysregulation

[emilie]

Ok, i have seen the doctor 2-3 times.

So i made tetany crisis because i am dehydrated, i drink too little.

I'm never thirsty so i force myself to drink 1,2 liter per day(i can't drink more). (i think i drinked less than 500ml per day whn i had tetany).

crisis all the day of tetany stop.

 

The problem then was that when i drink a few sips ,stomach balloon becomes hard.

So i come back to doctor that say i have a gastritis (inflammation of stomach) and gastroesophageal reflux disease. So i am on IPP. He says that i did not drink enought because of gastritis.

 

For now i still having some crisis at sunset. I find that valerian root helpfull... I know it is just GABA so my crisis everyday at night is too less GABA, so it still withrawal.

I have lost 4 kg in one week, so on the moment i will take valerian extract. And i have began light therapy (my doctor say me that it can help) with a lamp that cost 200$. If it can help i will try.

I will continue to force myself to drink water since my body does not say to me when he need to drink

 

If i am very bad 1000mg stop crisis immediatly. I will try 200mg in prevention at sunset.

[emilie]

since i take Proton-pump inhibitors (PPIs) (IPP) my stomack is ok, but i continue having burning throat.

Dimeticone paste (polysilane) seem to help to sleep a little.

[emilie]

i make 2 dishes per day. At 6h and 11h. i do not eat the afternoon for the moment.

In each dish i eat 50ml of vermicelli (rice or wheat) or a little of baby pot food (under 6 months). I avoid fibers and prefer rich water food. Sometimes i had one egg or a slice of ham or somes olives.

I take a nap at 14 hours (3 hours before the sunset).

 

[emilie]

Ok, i returned to the doctor and he said i have not reflux. I have gastritis and pharyngite.

[emilie]

Since i have stop all, each time i am ill, i have difficulties to support it, it destabilize me at an important point. Like exponential, it aggravates very quickly becoming totally weak and instable. Really hard. losing rapidly weight. (it will take months to re-gain this kilos)

[emilie]

I am well since 2 weeks.

No crisis at sunset, and no crisis at all.

It seems crisis at sunset was false diarhea because of constipation.

 

My diet actually :

I drink 1 liter of water per day

I have increase my intake of fiber including insoluble fiber.

I have stop dairy product including butter

I eat many fruits and vegetable with all the skins for insoluble fiber.

I eat less cereals, and the cereals i eat are complete.

I take oil (sunflower)

i eat some thon and raw yellow eggs.

 

I just take alcabase (citrate supplement to have more alcaline diet).

[emilie]

i have insomnia, low voltage and reflexe syncope.

But otherwise, i am fine.

It seem i have finally found a diet for me that regulate my transit.

I eat twice a day : morning and midday.

150grams of meat or fish with potatoes (mash potatoes with cooked salad or fries) . 2 bananas in evening.  Nothing else.

A licorice candy or fisherman friend the morning in my bed to help me wake up (low blood pressure).

no grain, no sugar, no dairy product, no egg, ...

 

It seems my transit is stabilised with this for the moment. ( i had diarrhea with yellow or green stool). Now my stool are brown and compact. My stool seem normal.And i have more energy.

 

 

 

[ChessieCat]

I've moved the posts about tasteless food to this topic:  

 

 

[emilie]

Even if i never feel hungry.

 

It seems that i do binge eating.

 

If i open a bags of cookies, it is like it need to be finish. 

I start eating without hungry, and something make me eat all the package. Curious.

I don't make me vomiting or other. Just i "over" eat,and can't stop until the package is over.

 

[emilie]

Doctor said me an explanation for my evening crisis(when the sun goes down):

 

i have a vasovagal reflex syncope when i have bowel movement to defecate.

 

i have not this every evening because, sometimes, i don't defecate.

 

i make vasovagal reflex syncope if the temperature is too hot, and if i stand up too long.

 

it is really a problem.

[Altostrata]

What do you mean by nightly crisis?

 

Your doctor said to raise your legs when you defecate, correct? That makes it less stressful.

 

You can get your bowel movement to regularly occur in the morning by taking a psyllium supplement every night, with water.

 

Perhaps you need to listen more closely to your body and make small changes to take care of it.

[emilie]

nightly = when the sun goes down each evening = sunset

i defecate only the evening, rarely at another moment.

 

the crisis : i feel weak without energy, internal tremor, difficulty to stand up or walk,

sometimes difficulty to breath(sensation of not enough air), tensed jaw that shake, breathing slowing.

It start before defecation and continue until i defecate. if i lay in a bed without defecate it will continue. If i defecate, it will slowly stop.

 

for the posture, see the first picture here http://www.leseclaireuses.com/bien-etre/relevez-vos-jambes-20-minutes-par-jour-et-voila-ce-quetrsquo;il-se-passe.html

 

it is to make the blood go in the brain to avoid fall when the crisis is here. 

I can' t do this while i defecate

 

Doctor say too to try raising cardiac blood pressure before the problematic hour to test if it work.  But i feel without energy (i have a low blood pressure and i does not eat many, because i am not hungry, and often after eating and even while i am eating, i feel bad (i think it is vagal too).

 

It is difficult to take care of me bacause i live alone. i would like to socialize for my mental. But the body does not follow.

 

Doctors say to make sport for my problems of osteopenia, my problems of breathing difficulties, to remake the body function.

 

But i don't know. It is like i have no muscle.

 

For psyllum i don't know. If i eat whole grain (fiber)  it make me worse. 

And fiber make you defecate more often, because more waste to evacuate, so it will make more crisis.

 

One thing that seem to calm is breathing cold air.

 

 

 

[ChessieCat]

2 hours ago, emilie said:

The doctor said an explanation for my evening crisis.

I do vasovagal syncope when i defaecate.

 

i have searched on google and find defaecation syncope.

 

i knew i did vasovagal syncope if it was too hot temperature, and if i stand up long.

But i didn't knew when i defecate too (poo).

The doctor just said to me to lengthen and lift legs when i do a syncope.

The last time it arrive, it was with my family when evening dinner... you eat and your bowel move and make syncope...

 

i start this post just to know if others have that, and if it had goes away with time.

(i have stop medication 2 years ago)

 

 

Letting you know that your post has been moved to this topic:  dysautonomia-autonomic-dysregulation-pots-syncope-etc

 

There are many existing topics on this site.  Please do a search before creating a new topic.  SA likes to keep similar information in one topic so it is easier for members to find.  You can use the site search function or use google and add survivingantidepressants.org to the search term.

[emilie]

i do hyperventilation syndrome, with the body internal vibrations. 
I have misophonia too.

It seems often like if i had not enough mucus in my nose to breath.

[emilie]

i make hyperventilation syndrome (spasmophliia) and tetany

[emilie]

i have dysphagia

[Altostrata]

Emilie, did you talk to your doctors about your inability to eat?

[emilie]

yes he want i follow psy advisements. and psy want to put me on medication. psy want zyperia. my doctor wantes to put me on lexomil or veratran.

all is in the head. no organic problem.

[emilie]

for the moment i eat modulen ibd liquid diet. 

 

i will try melatonin to help my digestive problem. 

 

[carefulprayerful]

Emilie, 

 

J’ai vu ton histoire, mais je ne l’ai pas lue toute entière.  Je suis désolée que tu aies des problèmes digestifs et des symptômes au coucher du soleil.  J'espère que tu vas mieux demain.  

 

Après avoir pris la drogue lithium pendant 6 ans, mes reins fonctionnaient à 36%.  C'était il y a un an et demi que j’ai arreté celle-la, et maintenant ils fonctionnent à 56%.  Le changement a été graduel. J’ai changé mon alimentation, etc. Sur une note personnelle, je faisais pipi toutes les 45-60 minutes et maintenant c’est toutes les 2-3 heures.  Néanmoins j’ai fait pipi dans le lit il y a deux nuits. Ca arrive encore occasionnellement!

 

Je dois toujours me sevrer de deux autres.

 

Si je n’ai pas tort, tu as arreté tous les médicaments psychiatriques?  

 

Porte-toi bien et bonne journée!

 

CarefulPrayerful

 

[emilie]

oui jai tout sevré.

je me lève a 4h pour manger a 4h du matin. puis je mange a 7h, 10h, 13h et 16h.

le soir et les fin daprem peuvent etre problématique, même sans repas a cause des tremblements donc je ne mange pas.

je dirai que ça fait 2 jours que ça va mieux. mais quelle lutte. pfff

bon courage a toi aussi. la route semble longue.

 

 

[emilie]

against anemia, i had to take iron supplement. i wonder if it could worsen my symptoms. 

even during crisis when i did not eat food, i just took iron supplement during fasting , ferograd :ferrous sulfate with 500mg vitc. 

perhaps i done wrong doing this.

 

[emilie]

i have stop all supplement including iron. too much digestive problem,

i eat only modulen ibd for the moment.

i have a fungal infection on my tongue. i will search and inform myself on that side for the moment.

 

[emilie]

my ferritine is 12 ug per liter.  i still have iron deficiency. 

 

finally after examination in labiratory i have no fungal infection in my tongue, just it is white colored without explanation.