Withdrawal Mysteries. Jon and Justin’s Journeys

Being Hooked to and having to Withdraw from Antidepressants, especially any that act on the serotonin system, is one of the greatest public health issues of our day.  Close to 15 per cent of the population of most Western countries are affected.

Peter Groot and colleagues in the Netherlands have done more than anyone to raise the profile of these issues by providing a method to taper drugs that is helpful to many but in addition helpful in that it encourages people to try withdrawing even if the method doesn’t work.  See Tapering Strips.

RxISK has run posts on Side Effexor Withdrawal  and Managing Effexor and SSRI Withdrawal  and asked experts on withdrawal to comment on conditions like Protracted Withdrawal Syndrome that don’t easily fit into any model.  In some cases, it seems, there are other medicines that can all of a sudden transform an impossible to withdraw case into something manageable.

At the risk of confusing people, this post has two more cases, Jon and Justin, that do not map easily onto a tapering template – hence the Mysteries of Withdrawal title.

Jon Habermann’s SSRI journey

It has been 9 months since I took my last dose of Paxil. I tapered down from 60 mg over a 2 month period, going from 60 mg to 30 to 15 to zero.

Now after 9 months my mind is recovering and I am able to, with a clearer mind, see how this drug affected my thinking, personality and decision making. It was so gradual that I didn’t realize what changes were taking place. I was in such a horrible state mentally when I started the drug, any help it gave was welcome.

In 1995, after 22 years of developing a sales territory, I had lost everything because of poor quality product delivery. My loyal customers cancelled their contracts. I was powerless to stop the process. That started a years long journey of trying to figure out my next career. What followed was disappointment, rejection and failure.

As the depression and anxiety worsened I went to counseling and was put on Xanax and Paxil. That was the start of 25 years of SSRI dependence. After about 9 months I quit the Xanax and almost jumped off a three story balcony because I didn’t taper down properly.

In 2008 I suffered a traumatic brain injury, at which point Celexa and Remeron were added to the Paxil. I tried to live with this for 15 months, during that time I contemplated suicide, made horrible financial decisions and pretty much wanted to check out of life. Poor financial decisions, from the outset of the Paxil therapy, ultimately led to bankruptcy.

I quit all three drugs cold turkey one day, the withdrawal was awful. After 6 weeks of withdrawal hell I consulted a psychiatrist who said since I seemed to tolerated Paxil well before, I should start it again. Lo and behold the withdrawal subsided and I continued on it for the next 14 years.

During this time I’ve had increased anxiety, panic attacks, PTSD and constipation so bad I daily took 3 stool softener laxative combo pills to stay regular. My doctor never questioned why these things were still occurring. This drug was supposed to eliminate those things, instead they increased in frequency and intensity and he just increased the dosage to 60 mg per day, the highest recommended dosage.

Stopping

I decided 11 months ago I was going to try facing life without the dependance on a chemical since it really didn’t seem like the things I was taking it for were going away, in many instances they were worse. I had constant triggers that set me off. Whatever the Paxil was supposed to be preventing wasn’t being prevented.

So now as a 72 year old male I am 9 months into my withdrawal from Paxil after being on 60 mg for 25 years.

Here is what I’ve experienced so far:

• extreme shoulder pain at night I couldn’t sleep,
• insomnia,
• foot pain at night,
• depression,
• irritability,
• PTSD, anxiety, panic attacks,
• weight gain,
• brain zaps
• weird mental things I can’t  even describe.

I’ve ended up in the Emergency Room twice because I passed out. The first was from a panic attack when having blood drawn. The second, from an obsessive behavior because I was convinced doing a routine of sauna bathing was the best thing I could do for my health longevity. After doing an intense routine for 11 days, 19 minute sauna, cold shower, 19 minute steam room, cold shower, 19 minute sauna, cold shower, I passed out and was transported to the Emergency Room.  I know this decision was made because I was in the midst of the withdrawal.

The insomnia was the first 3 months, every night, now it is just every once in awhile, but still there. All the other things for the first 6 months were constant and intense, now after 9 months they appear out of the blue every once in awhile.

For months I took a five minute cold shower every morning, that really helped to ease the anxiety, irritability and shoulder pain. As of right now I sleep really good for 6 hours and then am wide awake for 1 to 1 1/2 hours and then go back to sleep for another 2 hours. I didn’t mention the vivid dreams, they have now subsided.

There really never seems to be a catalyst for the symptoms, they just appear out of no where. I am hoping these all just disappear completely, but am aware they will probably haunt me for the rest of my life.

Back to Normal?

Overall, my entire mental health is much improved since I stopped the Paxil, when you take out the withdrawal episodes.

I really question many of the decisions I made in those 25 years that led to many life changing events. I know the Paxil changed how I processed things, saw situations and ultimately made decisions. My behaviors were very obsessive to the extreme. I had some of these before the Paxil, but instead of eliminating them they became worse.

I was giving money away, especially to religious entities, money that should have been used to keep my business healthy. For years I was attending and being involved in home games and events with a particular NFL team even though I lived hundreds of miles away. My diet consisted of only two foods, peanuts and salad. This was all I ate every day.

These are just three examples of the obsessive behavior, there are many others. Now I am looking at the world from a much more controlled reality.

Shockingly, we are celebrating our 50th wedding anniversary this July, we’ve been to hell and back in those 50 years and by the Grace of God we are enjoying life much more today.

I remember reading a long time ago, that companies are always looking for the perfect product. One you used everyday, which would eventually wear out and you had to get another. At that point there was only one product that really qualified, other than food, and that was a razor blade. Everyone was looking for the next razor blade.

It seems to me the pharmaceutical companies have found the next razor blade. Get a person taking a drug, make the withdrawal side effects so bad you never want to discontinue the drug, and you have developed the perfect “cash cow.”

Justin’s SSRI Journey

In complete contrast to Jon’s ‘common sense’ approach – hey just stop the damn stuff – and his experience, Justin took a very scientific approach.  He slowly titrated his SSRI down and then switched to fluoxetine liquid and began to taper a low dose of that very slowly.  That was two and half years ago and he is still struggling with a lot of discomfort.

We outlined Justin’s strategy as he was starting.  Tapering was his cornerstone but he also researched TRP receptors and channels and all the herbs, vitamins and other products known to act on these channels with a view to making withdrawal more comfortable.  See Managing SSRI Withdrawal – another way and TRP Drugs and Herbs for SSRI Withdrawal.

Justin’s Managing Antidepressant Withdrawal is now close to a diary of the last two years.  It has close to 100 comments – almost all from Justin – detailing different problems as they have arisen – erythromelalgia, blood pressure and other problems.

The diary makes grim reading.  His observations seem to me to be very accurate and hard to dispute.

Examples

I’m having trouble sleeping, the pain has become really quite severe, I agree that this looks like peripheral neuropathy. This time I’ve been seeing a dropping off in my blood pressure. I measured my BP go from around 100/70 down to around 70/40 yesterday.

Obviously I feel quite weak, dizzy and unhappy having to endure these symptoms. Today I might try boosting the dose back upto 0.8mg for a while to see if that improves things.

My BP is moving around quite a lot but tending towards being quite a bit lower than usual.  I measured it a few times and it is around the 80/45 mark after lunchtime.  I’m drinking plenty of fluids my HR is about 90 bpm in the prone position with my legs now raised.  I suppose this variation in blood pressure must also be linked to the peripheral neuropathy somehow

I think the very low blood pressure readings may well have been due to the design of the new cuff I purchased for my machine. The cuff has a long metal buckle which is much wider than the cuff and it can slide up and down. I noticed having the buckle positioned to one extreme can make the cuff uneven when it compressess and this is when I get the very low BP readings. I can get a reading of 70/30 if the buckle skews the cuff but if better positioned the reading is 115/70. It is easier to overlook this sort of thing and fool yourself if you are feeling a bit grotty.

Earlier on today I felt a lot more uncomfortable than usual.  I acquired a 500g bag of old india lemon balm herb this week so I made a mixture, a tablespoon of lemon balm with an equal amount of valerian herb in my french press.  I drank a cup of the valerian/ lemon balm mix about a hour and a half ago and now I am alot more comfortable.  Sometimes in withdrawal, I really do get very painful and it is nice to have something that can help me feel a lot more relaxed.  I still find it hard to believe that a 0.1mg drop in dose over 9 weeks caused symptoms to get so uncomfortable this week

The latest problem Justin has encountered is erythromelalgia which you can see here – where feet and sometimes hands become red and hot and burning.  Researching this, he found aspirin should help and it does.

These points are really fascinating and point to a possible peripheral neuropathy in some withdrawal cases along with that gets referred to as dysautonomia.

If there is a peripheral neuropathy element in some cases it is not clear that tapering will help.  Justin finds putting the dose back up slightly can help but this is quite like the use of these medicines for pain management – they can help ease pain but by damaging nerve endings further so that they don’t transmit pain.

What is really needed are treatments that are going to regenerate nerve endings rather than alleviate problems by further damaging them.

Enduring Sexual Dysfunctions

There are issues here that are important for people with PSSD, PFS, PRSD and PGAD as these are conditions that also seem to involve a peripheral neuropathy.

There needs to be common cause between people with Enduring Sexual Dysfunctions and Protracted Withdrawal as the answer for one might well provide an answer to the others.

PPIs and Leukotriene Antagonists

There are also issues here for people taking Leukotriene Antagonists for asthma or allergies which also lead to conditions that are commonly referred to as withdrawal problems but which may also involve a degree of peripheral neuropathy.

See Montelukast Withdrawal Syndrome and Montelukast Withdrawal and Toxicity as well as a recent post on Proton Pump Inhibitor Withdrawal.