Lolo24: windows and waves of frustration

[Lolo24]

I am thankful for learning about this page and would like input and advice.  I know that Benadryl is not a typical SSRI but I learned about this group when research withdrawals from drugs in the same anticholinergic family.  I did read a few other people in past posts that also had problems with benadryl/Diphenhydramine (DPH) withdrawal.  I wanted to share my story and hopefully get some inspiration, encouragement, and advice.  

 

I had adverse reactions to DPH when I was/ younger.  I took it as a child and had hallucinations.  I tried a Tylenol with DPH in my early 30’s and the same thing happened.  For some reason, when I tried it again in my late 40’s, I didn’t hallucinate and thought “well it must be ok now”.  I started taking DPH maybe a year and a half or two years ago for sleep during a stressful time.  First at the recommended dose of 25 mg and then 50 mg and then during the last year or so I was taking 100 mg every night along with about 50 mg of Melatonin.  I think more than a few times I also took Doxylamine succinate along with the DPH.  During allergy season I also took Zyrtec and Clariton.  I saw a commercial for probiotics so I thought “well that’s a good idea” and began using Florajen for really no reason.  Ironically, even with all of that sleep medication, I was up every hour or so at least all night.  

 

In December 2019, I began to think I should stop taking DPH to sleep.  I took about 3-4 days to “titrate” down.  After about a week or so I started to wake up with head pressure.  Almost like a charlie horse that would move in random spots on my head.  In addition, I would wake up with my face clenched so hard and my tongue pressed against the roof of my mouth.  Almost like I was bracing for impact.  For a few weeks they were often but not daily.  The first week in January, they became almost constant.  Along with this, I had chills for no reason with no fever, severe leg itching and severe nasal congestion and ear pain.  I went to my Dr. several times and even my ENT.  My nasal passages were very swollen but no infection.  They prescribed me an antibiotic and prednisone.  The antibiotics made me very, very dizzy and I began to feel worse.  I stopped taking them after five days.  I blamed my problems on the probiotic and went back on the Benadryl and the zyrtec and clariton and started to feel so much worse.  I wanted to go to the ER and tell them I felt so awful but didn’t because really had no pinpoint symptoms.  I also started feeling a ton of depression and depersonalization along with extreme anxiety.  Although I had stopped the antibiotics, I took the prednisone for a few weeks and began to experience what I describe as fast modulating mood swings.  I would feel extreme anxiety and despair and possibly 15 minutes later, feel normal for a few minutes.  Then back to the anxiety.

 

I kept going to my doctor to try to figure out what was wrong but never mentioned the amount of DPH I was taking or that I had tried to get off of it because I didn't think it was relevant:(.  The anxiety morphed into panic attacks to the point that my husband was missing work to stay with me.  I made an appt. To see a mental health provider via video that happened to also be a substance abuse counselor.  I explained to her that I really felt the anxiety and panic attacks were physiological not psychological and blamed it on the probiotic.  At the end of our first meeting, I mentioned the Benadryl and Predisone I had been taking and was trying to stop and she immediately said “you are in withdrawals”.  I made an appt. to see my dr. the next day, told her what the counselor had said and how much medication I had been taking and she adamantly agreed.  She had seen many patients overdose on DPH and said it would take 30- 90 days AT LEAST to feel better.  I’m at 90 days now so I know I’m in the “at least” group.  I eventually also saw a psychiatrist that was an addiction specialist and he believes, given my history with that drug, that I am extremely sensitive to that drug family.  He also mentioned the windows and waves theory.  I also saw a neurologist and had an MRI which indicated no problems.

 

My other symptoms during this time have included:

 

Dizziness

Ear pain so bad I would put q-tips in a glass of ice water and place them in my ear drums to relieve the pain

TMJ like symptoms of jaw and tooth pain without dental problems

Extreme pressure behind my eyes

Constant shoulder muscle tightening.  I set a timer for 15 minutes to try and remind myself relax

Annoying Ear worms

Face Rash and flushing

Nausea

Diarrhea

Extreme neck stiffness

Pain that went up my neck into my ears

Shoulder and back pain

Skin breakouts on my face

I think some people refer to this feeling as Brain Zap but it’s like I’m on an amusement park ride and the bottom has dropped out feeling in my head.  Like I”m suddenly falling but I’m not.  It’s different than dizziness

Headaches that are more like random charlie horses on my head that rotate in places.  

 

I’m somewhat encouraged that I have some days when the Window lasts most of the day and try to be encouraged that I have improved.  I have more where I’m in the wave.  I have some days where it fluctuates between window and wave by the hour.  The wave symptoms sometimes change.  I go through a few days of dizziness.  The next wave may be headaches.  The next is pain and depression.  When I’m in a window, I fully believe it must be medication withdrawals.  When I’m in a wave, it’s impossible to believe that a medication I can buy at the store would cause any of these symptoms after three months.  Also it’s impossible to believe that I will ever feel better or return to normal.  It’s a very deep pit, that wave.  I don’t always believe I will fully heal which is really hard for me to understand:(.  Any words of encouragement would be so appreciated.  I also don't understand why these physical symptoms occur so any input on that would be great.  Thank you!

 

Edited June 22, 2020 by ChessieCat
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[Gridley]

Welcome to SA, Lolo24.  Since you joined on June 4th, before the June 11 cutoff for new registrations, I'll be happy to respond to your post.

 

Antihistamines were the predecessor to SSRI's, and they do affect the brain  You're right that others have had problems with Bendryl withdrawal.  

lplp: Withdrawing from benadryl - Surviving Antidepressants

The symptoms you describe, along with the waves and windows patterns, is typical of withdrawal and much of our information on withdrawal and healing from SSRI's will be applicable to your situation.  As I would say to someone withdrawing from SSRI's, you will heal but it's impossible to predict how long it will take.  You mention that it's hard to believe that something you can buy over the counter could cause such symptoms in withdrawal.  Many members have said the same thing about the SSRI's prescribed by their doctors who gave every assurance about how innocuous these drugs are and that there was no such thing as withdrawal. Regarding the physical symptoms, withdrawal symptoms can be physical, mental or emotional and many members experience all three.

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

The Windows and Waves Pattern of Stabilization

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

Brain Remodelling 

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system. 

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose in case you do experience problems.

 

This is your Introduction topic, where you can ask questions and connect with new members.  We're glad you found your way here.

 

 

 

 

 

[Lolo24]

Thank you for the information Gridley😊.  I'm trying to be encouraged by the progress I've made and taking it easy.  The windows are great but the mind game of the waves is really difficult for me to beat.  I

 

[Altostrata]

Hello. Lolo.

 

Benedryl dependency is not really within our purview. We have people here who take it to sleep, but it usually poops out on them long before they can become physiologically dependent on it. Then it does the opposite of help sleep, sometimes even causing anxiety or sleeplessness -- a paradoxical reaction.

 

Your situation is unusual in that you were taking extraordinarily large doses of diphenhydramine regularly for an extraordinarily long time, plus a bunch of other antihistamines on and off, it seems. I have no idea what kind of physiological change this might cause, but I'll bet it's a lot.

 

Zyrtec also has a rebound syndrome. I am surprised your doctor has thought nothing of prescribing all these drugs, and more, at once.

 

For psychiatric drugs, if people get withdrawal symptoms, we advise taking a very small amount, perhaps a tenth of a dose, to relieve withdrawal symptoms, then taper off that later. I have no idea if this will work for you or if it will cause a paradoxical reaction.

 

You were also taking an extraordinarily large dose of melatonin. With sleep drugs, too much of something often causes a paradoxical reaction -- sleeplessness. As little as 0.25mg melatonin can be effective for sleep, but you should also follow "sleep hygiene" to strengthen your sleep with non-drug means. See

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Path to Better Sleep FREE online for everyone from the US Veterans Administration

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

What is the sleep cycle?

 

Melatonin for sleep: Many people find it helpful

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

 

White noise devices for sleep

 

and other topics in the Symptoms and Self-Care forum.

 

Now, unless you're taking psychiatric drugs, your questions are beyond what we do here -- we don't do sleep, allergy. or general medicine.

[Lolo24]

Thanks for replying Alto!  I found my way here by learning that Benadryl is an anticholinergic and trying to find information about stopping this type of drug.  Also, it seems Benadryl was an early SSRI so maybe there is some overlap.  So far it's the only thing that is making sense.  

[Altostrata]

I'm sorry you have to deal with this. Still, I cannot counsel about every adverse drug effect out there.