fullonmonet: Withdrawal or something else ...?

[fullonmonet]

Hello all,

 

I was first prescribed 25mg of zoloft late November of 2015 after a few days in the psych ward. Afterward when I found a psychiatrist, he raised my zoloft to 100 mg and then a month or two later he added topamax 25mg and Latuda (can't remember the dosage) into the mix. Shortly after I started to get brain zaps even when I was taking the medications on time and foolishly I decided to just stop taking them all together around March or April of 2016. I never returned to that psychiatrist or any psychiatrist for that matter. 

 

Now almost four years since taking them I am still plagued with brain zaps. They are not always present but appear every few months for a few days and then vanish into the wind. It went on that until about Feb of 2018 when I started experiencing numbness in my legs. I thought it was a stroke or blood clot so I went to the ER. After I got a MRI of my brain and an xray of my spine, the doctors told me that the findings did not explain my brain zaps or numbness in my legs and sent me home with an article from PsychologyToday that I had already read a million times detailing SSRI withdrawal syndrome. I felt defeated and never thought to contact a neurologist. Since then my symptoms got progressively worse. Every few months there would be relapses and a new symptom would appear; lhermitte sign, paresthesia, tingling, itchiness, fatigue, and pain behind eyes. I started to document my symptoms April of this year after another relapse. I had another relapse September/October. 

 

Today I am in the throes of another relapse. This time somewhat longer than normal. I decided once and for all to find out if what I am experiencing is just the repercussions of not tapering off some medication almost four years ago while being a stupid college kid or if what I have is something more serious since SSRI withdrawal seems to mimic quite a few other neurological diseases. Tomorrow I go in to see if I can get a referral to a neurologist. Wish me luck. 

 

Edited November 29, 2019 by Shep
added new username to title

[Gridley]

Welcome to SA, fullonmonet.

 

Yes, withdrawal can last four years, but it's good you're seeing a neurologist to check things out.

 

The symptoms you describe are common withdrawal symptoms.  I'm going to give you some information so you have a better understanding of protracted withdrawal.

Protracted Withdrawal or PAWS (post-acute withdrawal ...

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.

 

 The Windows and Waves Pattern of Stabilization

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

These explain it really well:

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

   On 8/30/2011 at 2:28 PM,  Rhiannon said: 

When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.

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) 

 

Please research all supplements first and only 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 other members.  We're glad you found your way here.

Edited November 29, 2019 by Shep
edited with member's new username in salutation

[Leo1983]

Hi.

 

your stuff appears mainly physical. is that correct?

 

 

[Altostrata]

Welcome, fullonmonet.

 

I think it's wise to see a neurologist to rule out any identifiable neurological ailments. It's not likely they'll be able to identify PAWS.

 

If it is PAWS, the magnesium and fish oil supplements Gridley suggested might help. Even a little tweak can assist your nervous system in stabilizing. Are you getting at least 30 minutes of gentle exercise, such as walking, every day?

 

Please let us know how you're doing.

Edited November 29, 2019 by Shep
edited with member's new username in salutation

[fullonmonet]

5 hours ago, Gridley said:

Welcome to SA, fullonmonet.

 

Yes, withdrawal can last four years, but it's good you're seeing a neurologist to check things out.

 

The symptoms you describe are common withdrawal symptoms.  I'm going to give you some information so you have a better understanding of protracted withdrawal.

Protracted Withdrawal or PAWS (post-acute withdrawal ...

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.

 

 The Windows and Waves Pattern of Stabilization

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.  

 

These explain it really well:

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

   On 8/30/2011 at 2:28 PM,  Rhiannon said: 

When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.

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) 

 

Please research all supplements first and only 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 other members.  We're glad you found your way here.

Thank you for the welcome and the supplement recommendation I will definitely look into them to help alleviate these symptoms

[fullonmonet]

2 hours ago, Leo1983 said:

Hi.

 

your stuff appears mainly physical. is that correct?

 

 

I do have anxiety, mood swings, and some depression but those things were present before I took medication. 

[Leo1983]

So its the physical symptoms you still class as withdrawal?

 

thanks

[fullonmonet]

4 hours ago, Altostrata said:

Welcome, fullonmonet.

 

I think it's wise to see a neurologist to rule out any identifiable neurological ailments. It's not likely they'll be able to identify PAWS.

 

If it is PAWS, the magnesium and fish oil supplements Gridley suggested might help. Even a little tweak can assist your nervous system in stabilizing. Are you getting at least 30 minutes of gentle exercise, such as walking, every day?

 

Please let us know how you're doing.

hello Alto, I figured they would not identify PAWS after I read other people's accounts of going to neurologists. This is why I decided to omit the fact that I have been on those medications just to see what happens. I am not getting exercise at the moment just because of the annoying pain and also the cold weather 😞  but I plan on walking my dog everyday since I noticed both of us could definitely use it lol

[fullonmonet]

1 minute ago, Leo1983 said:

So its the physical symptoms you still class as withdrawal?

 

thanks

yes its the physical symptoms that I am trying to determine if it is the result of withdrawal or something else. no new emotional symptoms have occurred. 

[Leo1983]

Thankyou.

 

Thats a big thing for others recovering. 

 

I wish you well. 

 

regards

 

Lee

 

 

[Altostrata]

2 hours ago, ambryant said:

hello Alto, I figured they would not identify PAWS after I read other people's accounts of going to neurologists. This is why I decided to omit the fact that I have been on those medications just to see what happens. I am not getting exercise at the moment just because of the annoying pain and also the cold weather 😞  but I plan on walking my dog everyday since I noticed both of us could definitely use it lol

 

It would be interesting to see if they ask whether you've come off any psychoactive drugs recently. If they don't, they're clueless.

Edited November 29, 2019 by Shep
edited textbox with member's new username

[fullonmonet]

17 minutes ago, Altostrata said:

 

It would be interesting to see if they ask whether you've come off any psychoactive drugs recently. If they don't, they're clueless.

I am going to give an update post soon on my referral appointment 

[fullonmonet]

As I mentioned in my Intro post, I did have an MRI done in Feb of 2018. If you are curious here were the results: 

 

a likely pituitary micro adenoma measuring at 3mm, few subcentimeter foci of signal abnormality randomly distributed in the supratentorial white matter, and developmental venous anomaly in the left middle frontal gyrus.

 

I went to my primary doctor on Friday to inquire about a referral to neurology. I was not asked about recently withdrawing from antidepressants. I was just asked about previous conditions I might have and my vitals were taken also I was somewhat subtly shamed for waiting so long to have a follow up from my first MRI. The doctor seemed more concerned about my likely pituitary tumor than I was. (I was not concerned because a good amount of people have pituitary tumors without knowing it because for the most part they are benign and asymptomatic). She told me I need to get labs done on Monday, to call a neurologist and a endocrinologist to set an appointment, and to call for an MRI. So tomorrow I will be busy. The labs I think were for a prolactin measure and for a cortisol test. That's all I can remember her saying but I heard her muttering under her breath about a TSH test as well. 

 

I would also like to say I am happy I found this community and wish more doctors took withdrawal seriously. I saw so many posts about people's doctors telling them it was unnecessary to taper off anti depressants because they are "safe." 

[fullonmonet]

I saw a neurologist today. It went ok I think. He asked about my symptoms and did some tests like testing my peripheral vision and how I walk. He believes that it is my pituitary tumor that is causing my symptoms. I do not know why I am hesitant to agree. My symptoms don't seem to full encompass pituitary tumor symptoms. The only overlapping symptom would be numbness, muscle weakness, and fatigue. But I have other symptoms like spinal pain, burning scalp sensation, muscle twitches/spasms, burning band sensation on left arm, and brain zaps. I feel like the pituitary tumor is blinding them. In the past my symptoms would resolve after a few days but now they have been going on a two weeks. The neurologist did not ask about past anti depressant use and I didn't mention it. Besides anti depressants/anti psychotics, are there any other medications that can cause withdrawal type symptoms. I have this fear of taking medication because if my symptoms are withdrawal related I don't want to make it worse. 

[fullonmonet]

I haven't posted in a while. 

 

I saw an endocrinologist on Dec 20th and he adamantly insisted that my symptoms were not caused by my pituitary tumor. He told me my pituitary tumor is active however (prolactin secreting) and asked would I like to be prescribed cabergoline to lower my prolactin or I can choose to wait 6 months for a followup prolactin test. Symptoms of high prolactin are no menses, low sex drive, breast secretion. Since I have none of those symptoms and weary about taking medication (especially since this one seems to affect dopamine) I declined and decided to wait another 6 months for a follow up. 

 

On the 23rd of Jan I had my MRI and these are my results: 

 

Unremarkable craniofacial structures. There is small right maxillary mucous retention cyst or polyp. Normal orbits, skull base and craniocervical junction. Normal intracranial anatomy. No evidence of extra-axial fluid collection, mass lesion, hydrocephalus or brain herniation. Multiple irregular foci of subcortical and deep white matter signal changes scattered throughout both cerebral hemispheres. No acute ischemia or hemorrhage.

Dedicated images of the pituitary fossa demonstrate slightly enlarged pituitary gland with well defined internal focus of CSF signal intensity located within the left parasagittal posterior adenohypophysis. The lesion measures approximately 4 mm long axis. No evidence of adjacent cavernous sinus invasion. Patent intracavernous internal carotid arteries. -

IMPRESSION: Cystic lesion within posterior aspect of the adenohypophysis may represent cystic microadenoma or unusual location of Rathke's cleft cyst. Recommend correlation with clinical and lab data as well as 6-12 months follow-up. Multiple scattered subcortical and deep white matter signal changes with differential including but not limited to complicated migraines, sequela of prior trauma, infection, vasculitis or Lyme disease.

 

I see a neurologist in a few days but in the mean time I am still suffering from burning limbs and burning scalp. I am more and more shying away from this being withdrawal symptoms since there is evidence of signal changes (especially more since my last MRI two years ago). I do not have brain zaps at the moment but they seem to be replaced by almost a duller ice pick headache in my left temple. 

 

I guess a question I have is more so about the cabergoline. Is there any type of withdrawal effect with that medication since it is influencing dopamine? 

[Altostrata]

Hello, @fullonmonet. How are you doing?

 

Brain zaps are usually associated with psychotropics. Which of your symptoms emerged or got worse when you went off the drugs?

 

What happened with cabergoline? It seems a drug to be taken only a short time.

 

I Googled and found this, perhaps you also saw it. Yes, it needs to be tapered to avoid withdrawal symptoms.