Jellycat

[Jellycat]

Hi all!  Thank you for this site, it has been a wealth of information already!  I am a mom to three teens, all suffering from depression and/or anxiety disorders as I do myself.  

 

What prompted me to seek out help is my heartbreak over my 17 year old son's difficulty sleeping.  He falls asleep at night about an hour after he takes his clonidine dose of .2mg.  No matter what time he goes to sleep, he can only stay asleep for 1 1/2 to 2 hours.  If he goes to sleep at 11 pm then he is up for the night by 1 am.  

 

In the past week there have been a few days where he was then up until 10 or 11 pm the next night, so up for about 21 hours.  We would then think that he surely will be able to sleep through the night after being up all day but it doesn't happen.  Other days he will take a nap, he feels that he can sometimes sleep better if it is between 8 am and 1 pm.  

 

We had his cortisol level checked and it is normal.  I started researching all the medications he has stopped in the last few months to see if there could be a connection.  He has many medical problems including Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.  This disorder is often treated with SSRIs and SSNRIs.  

 

Before being diagnosed with POTS in 2014 all of his symptoms were blamed on severe anxiety so he has been on medication of one type or another since he was 8 years old.  Most recently he has gained a lot of weight, not helping the anxiety and possibly causing some depression.  

 

He talked to his doctor about this and how upset he was about it so they made a plan to wean him off all medications that could be contributing to the weight gain.  My son understood that this meant that his symptoms were all most likely going to get worse but he was starting to get depressed about the weight.  

 

We had already looked into the possibility that the weight was being caused by an endocrine disorder.  Since it wasn't, it really looked like meds could be the culprit.  He weaned off as stated in my signature.  

 

As I was looking at my notes to complete the signature, I realized that he was actually starting to have problems with sleep when he first decreased the Effexor XR from 75 mg to 37.5 mg.  From reading information on this forum, it looks like he weaned off it too fast and it might be a good idea to reinstate it.  

 

What I need to know is since he has been off it totally since 7/23/16, is this a good idea?  Should he just try to wait out the insomnia?  If I should reinstate, at what dose?  The good news is he has been able to lose about 10 pounds over the last month but at a pretty high cost.

Edited September 18, 2016 by scallywag
added paragraph breaks for readability, tags

[Shep]

Hi, Jellycat.

 

I'm sorry to hear your 17-year-old son is struggling so much, but I'm very glad you found this forum. 

 

It's quite possible a reinstatement will help. The Effexor may be causing some of the sleep problems, or it could a cumulative effect, the ripples and crashes of so many withdrawals in such a brief time. The tapers listed in your signature are quite rapid. Your son has sustained a major blow to his CNS. Reinstating and doing a gentle taper may help. 

 

Due to limbic kindling, his entire system may be very sensitive now, so any reinstatements may not need to be at as high a dose as he was on previously. Please read these links carefully. 

 

About reinstating and stabilizing to reduce withdrawal symptoms 

 

Taking multiple psych drugs? Which drug to taper first?

 

Tips for tapering off Effexor (venlafaxine)

 

Tapering Alpha Blockers or Beta Blockers

 

Please also read this link on stomach acid blockers, as it gives some insight into Zantac. As it says in the link, these kinds of drugs are notorious for blocking the absorption of key B vitamins. 

 

Tips for tapering off stomach acid blockers or PPIs...

 

And these links are key to understanding the safest way to taper off these meds and what happens during the withdrawal process:

 

Why taper by 10% of my dosage?

 

What is withdrawal syndrome? 

 

The Windows and Waves Pattern of Stabilization

 

I don't know anything about Hyperadrenergic Postural Orthostatic Tachycardia Syndrome and the medications used to treat this condition, so I'm going to ask the other moderators to weigh in. We do have mods who are familiar with these types of medications. 

 

For now, have a read of the information linked.  This is your thread to list your son's symptoms and to ask questions. 

 

A request - please list the number of years he was on the medications listed in your signature. This will help us place the drugs in context. 

 

I'm really glad you found us and I hope your son is feeling better soon. 

 

[Altostrata]

Welcome, Jellycat.

 

It sounds to me like your son has classic withdrawal insomnia from going off Effexor XR. One should never skip doses to taper, it's too irregular.

 

Do you have some 37.5mg capsules left? I would try opening the capsule and taking 10 beads. Do this at the same time early in the day in case it's activating.

 

Give it at least 4 days to reach a steady bloodstream level, keep notes of daily symptom pattern and drug ingestion. After stabilizing for some months, he can taper gradually by reducing beads.

 

Please let us know how he's doing, to adjust the strategy accordingly.

[Jellycat]

Hi, Shep.  Thank you so much for all of the links to these resources!  I am reassured that I will be able to get some much needed information.  I added the number of years for each medication to my signature.  I figured that I should give a more thorough account of his medication history so I added the medications he was on prior to 2014.  Unfortunately when he was younger, he was switched from medication to medication because they hadn't been working.  At that time though, he had a great doctor who was very knowledgeable.  She weaned him very slowly and he never seemed to have these problems.  Thanks for the help!

[Jellycat]

Hi, Altostrata.

 

The Effexor 37.5 mg that I have are 5 sided tablets, they are not extended release.  I do have 75 mg capsules of Effexor XR.  Would 10 beads of this be okay?

 

Thanks for your help!

[bubble]

Can you open the capsule and see how many (approximately) beads are there? Most capsules come with great many small beads but some have only a few larger beads. If your capsule has a lot of small beads (more than you can count), you can take 10. If not, we will see what to do next. There is a number of possibilities.

 

Did you have a chance to read through some of the threads Shep provided?

 

I believe this one would be a real eye opener:

What is withdrawal syndrome? 

 

Given the number of drugs he was 'tried' on over years it is very likely that he has been suffering from withdrawal symptom all these years and that more drugs were added to manage those symptoms. Did POTS develop after he was taken off drugs?

 

Are your other children also on drugs? Reading Anatomy of an Epidemic by Robert Whitaker might be another major eye opener for you.

[Shep]

Hi, Altostrata.

 

The Effexor 37.5 mg that I have are 5 sided tablets, they are not extended release.  I do have 75 mg capsules of Effexor XR.  Would 10 beads of this be okay?

 

Thanks for your help!

 

 

Hi, Jellycat.

 

Please read over this link carefully:

 

Tips for tapering off Effexor (venlafaxine)

 

There are descriptions of how to taper all the different forms of Effexor. As Bubble mentioned, after you open the capsules, please let us know what you find. After you read the Tips for Tapering link, it will make more sense. 

 

Bubble mentioned Robert Whitaker's Anatomy of an Epidemic by Robert Whitaker, which I also highly recommend. Most of us ended up here because we simply didn't know the dangers of these drugs and how they are marketed. 

 

This is a quick 10 minute video where Whitaker discusses some of the main points of his book:

 

Robert Whitaker, author Anatomy of an Epidemic - VIDEO

 

It is indeed eye opening, but even those who started out on these drugs very young can still heal. Come at this with that knowledge - the drugs are dangerous but we still heal - and you and your son will be okay. 

 

And if you and / or your other children are on these kinds of meds, please let us know if there is any more information we can provide. 

[Jellycat]

Hi. Shep and Bubble,

 

Thanks for all of the great information!  I watched Robert Whitaker's video and plan to buy the book.  I think you are right in that it will be very helpful!  

 

I opened the capsule and there are approximately 208 beads inside so I will give him 10.

 

My son's medical history has been so complicated that I just summarized what I thought might be relevant to his antidepressant medications.  His POTS which is a form of Dysautonomia started really young but was consistently diagnosed as anxiety and/or depression.  He has always suffered from some form of anxiety, starting with extreme separation anxiety at age 2 but this did not completely explain all of the health problems he was having.  It wasn't until he was under the care of a very knowledgeable psychiatrist starting around 2012 that we were able to start figure out that he was suffering from more than anxiety and depression. Until then every time I brought him to see his pediatrician, sometimes multiple times in a week, including ER visits for chest pain and tachycardia, they would write it off as an anxiety attack.  Unfortunately this is quite common with people suffering from Dysautonomia.  His psychiatrist tried to explain to his other doctors that his anxiety and depression were very well controlled by the medications he was on, which I agreed.  He was still suffering all of the too many to list health problems.  We eventually found a POTS specialist who diagnosed him through a Tilt Table Test, blood tests, ekg and echocardiogram. 

 

We have since found out that he has Ehlers Danlos Syndrome, median arcuate ligament syndrome (MALS) amd Mast Cell Activation Syndrome as well.  MALS is known to cause POTS because it compresses the celiac ganglion.  He will be having surgery soon to repair the compression and remove the damaged nerves.  It is hoped at that point he will be able to come off all of his meds for POTS.  All of the medications he has been on since 2014 have been to treat POTS and Mast Cell Activation Syndrome.  A lot of the medications to treat POTS are SSRI's and SSNRI's.  They have all been prescribed by his cardiologist for this reason.   Honestly, they have really helped.  I was nervous when he decided to start going off of them.  His POTS problems are all coming back which we expected and he is dealing with them because he is so happy to be able to lose weight.  I should also explain that he has been so debilitated by these illnesses that despite doing everything we can think of, and going from specialist to specialist, he has not been able to attend school for more than a couple months at a time in the last 3 years.  Most of this time he has been too sick to even work with a tutor.  This would have been his senior year of high school.

 

I am so glad I found you!  I have learned so much already and am glad he is coming off of these medications!  I am really hopeful that starting to reinstate the10 beads will eventually help him to sleep.

[Shep]

Hi, Jellycat.

 

You mentioned having both forms of Effexor, the XR and the regular. Which is your son going to taper from? This is important to know because regular Effexor has a short half-life of around only 15 hours. 

 

Please have a look at this thread, as it's a discussion among members who experienced a myriad of troubling symptoms including autonomic dysregulation, as a result of these drugs:

 

Dysautonomia (autonomic dysregulation)

 

I'm not convinced that a SSRI, SSNRI, or any other kind of antidepressant is the best remedy for any condition, especially long term, because many of us never had the symptoms of autonomic dysregulation before going on and especially coming off the drug.

 

It's important to keep track of his symptoms over the coming days so you can gage his taper.

 

This is a good resource for keeping track of symptoms: 

 

Dr. Joseph Glenmullen's withdrawal symptom checklist

 

 

Is your son having any other symptoms besides insomnia? 

[Jellycat]

Hi, Shep.

 

Well, from all that I am learning, this may be one of the problems.  It looks like his doctor originally tapered him from 75 mg XR going to 37.5 mg regular. The 10 beads that I gave him on Sunday and Monday were from the 75 mg XR.  He hasn't had his dose today yet.  

 

It is hard to tell if he is suffering other symptoms.  I think his appetite may have increased.  He is upset because he gained 3 pounds over 2 days despite dieting and continuing the exercise regimen he is on.  He thinks it is because he reinstated the Effexor.  He had 10 beads for two days in a row.  Would that be possible?  Could it cause you to gain weight that fast? He doesn't want to take it anymore.  He would rather not sleep than gain weight back.  Ugh! If he won't continue taking it, how long would he expect to suffer from insomnia?  I want to be able to help him understand that not reinstating and then tapering slowly is going to leave him with this problem for possibly a long time.  

 

I printed out the withdrawal symptom checklist so will sit down and go over it with him.

 

Thanks so much for your help!

[Altostrata]

It's very unlikely that 10 beads of Effexor XR for 2 days could immediately cause a big weight gain. 3 pounds could be variability among scales, or a few big dinners.

 

Did the 10 beads of Effexor XR have any other effect? Be sure to continue with beads from 75mg capsules.

[Jellycat]

Hi, Altostrata,

 

Thank you for the reply.  I don't think that the 10 beads have had any other effect yet.  I will try to convince him to continue with them and let you know how it goes.  

[JanCarol]

Hey Jellycat - 

 

There is a new societal pressure on young men that didn't exist before the millenium:  the six pack.

 

Now, in order to be "hot" or desirable, our children are expected to be able to flex a selfie that would win a modeling award.

 

I'm hoping that your son's desire to be fit and healthy, isn't to fit in with a standard which is dictated by the trends of the consuming masses, and the pressure of social networking.

 

You can bet that Humphrey Bogart did not have a six pack, and yet - he got Bacall.  Same with Burton and Taylor.  How the trends change!

 

It looks healthy it is judged as healthy - but it's not how big you are, but how strong and fit you are.

 

As someone who struggles, still, with metabolic disorder - it becomes important that you not "beat yourself into shape!"

 

Instead, even though I am very active (I attend yoga & karate each once a week, have added circuit training 1x a week, and tai chi & walking daily) - I look at measures of fitness.  If I looked at pounds and inches, (or kilos and centimetres) I would be perpetually depressed.

 

I have had friends with eating disorders, and that is a road you do not want to go down - and it starts with - self esteem.

 

Make sure he knows he is loved, he is fine the way he is, and it is always good to get better, to be better, stronger, faster, more skilled, even thinner - but - that he is fine, even beautiful, just the way he is.