LaurafromCT: finally off SSRIs but it's challenging

[LaurafromCT]

Topic title (before abbreviating)

 

finally "off" SSRIs but it's challenging - allergic to SSRIs / intolerance

 

Hi all,

 

My main question in case you don’t want to read the whole thing: I discontinued Prozac recently and my heart is POUNDING on and off, plus my legs feel crampy and hurt a LOT after mild exercise.  Anyone else experience this?

 

The long story:

 

Up until recently I had been on SSRIs for probably 25 years.  I probably took all of the different SSRIs, I can't remember which ones over the years.  For the past 10 or 15 years I was mostly on Celexa and Lexapro.  My Dr also added Abilify at some point because I was feeling "flat" (I think that's why) or maybe it was because I was having a hard time focusing and getting things accomplished.  I was also diagnosed with ADHD at some point and taking Adderrall seemed to help a bit (I still take it occasionally, before busy social situations, otherwise I get exhausted).

 

Over time I slowly developed what I can only describe as an allergy or intolerance to SSRIs.  It took me a very long time to figure out what was going on.  I had inexplicable body aches, fatigue, and a general malaise.  Some days I stayed in bed for hours.  Napping seemed to help (I would wake up feeling better afterwards).  Eventually I realized that the higher my SSRI dose went, the more I felt like crap.  About 3 years ago, when I finally put it all together, I asked my psychiatrist to switch me to a different med.  He put me on a series of different SSRIs.  Each time I switched to a new med, I would feel a lot better for a few months.  But then the body aches, fatigue, and malaise would creep back.  Also the cycle time between getting on a new med and the side effects occurring seemed to get shorter.  My doctor kept suggesting new and more expensive SSRIs.  He apparently didn’t believe me or understand that the SSRIs were causing my symptoms.  I finally found a new doctor.

 

My new psychiatrist believed me (kind of).  At any rate she put me on a series of tricyclics.  I did well on them at first, for longer periods of time.  Desipramine, then Imipramine.  But again, the body aches and fatigue crept up on me.  Some time in there I discontinued the Abilify which I thought might be the culprit (discontinuing that caused terrible restless leg syndrome at night by the way).

 

Late last year I came to the conclusion that I can’t take any antidepressants whatsoever without experiencing terrible body aches.  I started tapering off the tricyclics.  My psychiatrist recommended I see a new doctor who might be able to better help.  I first saw him in January and he recommended I switch to Prozac in order to do the taper because of the long half life (not sure if that was the best idea but whatever).  At his direction, I mixed the contents of a 10 mg capsule in 10 oz of water to make a 1 mg / oz “snow globe” solution.  Over the course of 3 months, I went from 10 mg to 0 mg of Prozac.  Not an ideal taper, but I simply had to get off it as quickly as possible.  The drug itself was making me sicker than the withdrawal symptoms.  My last dose of Prozac was 1.0 mg on March 26^th.

 

I am doing OK now but I am still getting “brain zaps” intermittently.  I sometimes (a lot of the time) feel like my heart is POUNDING, plus my legs feel crampy and hurt a LOT after mild exercise.  Has anyone else experienced these symptoms?  I have gotten two EKGs to make sure nothing is wrong with my heart.  I have debated taking another tiny dose of Prozac to see if it makes my heart feel better but I really suspect it will make me feel worse.  I just hope the pounding will subside over time.

 

Thanks in advance for reading this!

Edited August 30, 2019 by ChessieCat

[Altostrata]

Welcome, Laura.

 

Heart pounding and brain zaps means you went off Prozac too fast. What was your taper schedule? What was the last amount you took before jumping off?

 

Taking a little bit, such as 1mg, can stop the withdrawal symptoms. Do you have any Prozac left? You can make a liquid to take a tiny amount, or you can get a prescription for liquid. See

 

Tips for tapering off Prozac (fluoxetine)

 

You'd stabilize on this for some months, then taper by miniscule amounts to go off. Please let us know how you're doing.

[LaurafromCT]

Topic title:  Leg / nerve pain for 5 months. Mystery illness or SSRI wd?

 

I did a 3-month taper off SSRIs in Jan - March of this year.  I had to do a quick taper because the meds were making me sick.  I had brain zaps for a few months but they gradually went away.

 

Also in March, I went on a trip to Europe and we did a LOT of walking.  A crazy amount of walking.  My legs hurt a lot after the trip.  Knees, calves, IT band.  My legs simply never got better.  I have developed sciatica or something like that.  I have a constant itchy / pinchy pain in my legs which feels like nerve pain.  Here are my symptoms, which have not gotten any better over 5 months and might have gotten worse:

 

• Pain in both legs, tracing mostly down nerve pathways (saphenous nerve, sciatic nerve).   Like an itchy, uncomfortable pain.  I feel throbbing when pressure is put on the nerve.  Also not-painful electrical-storm feelings going down all down and throughout my legs.
• Tightness in leg muscles especially after any amount of walking
• Small kind of like trigger point nodes in my legs which are painful and tender
• Piriformis pain / sciatica on right side only
• I often wake up at 5:30 am no matter what time I go to bed, and I feel hot and restless.  Sometimes with a panic attack for no reason
• When I wake up (and sometimes throughout the day) I feel weak and shaky with rapid heartbeat.  Not fatigued though.
• I am crying easily lately but my mood is decent overall, considering.  I don't have anhedonia or anxiety.  Doesn't feel like depression.

 

I have had lots of blood tests, MRI on Lumbar spine, Xrays.  Nobody has a clue what is wrong.  Neurologist ordered a nerve study which is being scheduled.  Tested negative for rheumatoid factor, other inflammatory/infectious things.

 

I don't know if I have some mystery nerve illness or if this is an SSRI thing.  The symptoms above have continued unabated for 5 months.  I have tried acupuncture, PT, chiro, massage.  Doctors are suggesting I have fibromyalgia.  Which doesn't make sense because I am not tired and it started all of a sudden.  Out of desperation I took a 10 mg Prozac 10 days ago  to see if anything would happen.  Nothing seemed to change.

 

Any ideas at all?????  Thank you in advance SOOO much.

 

Edited August 30, 2019 by ChessieCat
added topic title

[ChessieCat]

 

Please respond to Alto's questions.  Thank you.

 

[LaurafromCT]

Like I said in my first post, I went off prozac over 3 months.  I am not sure what you mean by schedule?  I was on about 25 mg of imipramine in December.  I started with 10 mg of Prozac in January and then went down to 5, 4, 3, 2, 1 mg gradually over the 3 months.  I let my brain zaps be my guide. At the end I was taking 1 mg every other day.  I was probably on 1 mg every day for a week or so before that.  I had to get off it quickly because it was making me really sick.

[Altostrata]

How was Prozac making you sick?

 

On 8/30/2019 at 7:40 AM, LaurafromCT said:

....

Out of desperation I took a 10 mg Prozac 10 days ago  to see if anything would happen.  Nothing seemed to change.

 

Any ideas at all?????  Thank you in advance SOOO much.

 

 

Hello, what? You took 10mg? That's a lot more than 1mg. You had no reaction to 10mg?

 

How did you feel last week? Better, worse, the same?

 

Yes, those leg pains could be related to withdrawal syndrome. This may sound odd, but a lot of people find fish oil and magnesium supplements helpful, see
https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

Try a little bit of one at a time to see how it affects you.

 

Magnesium in particular can help relax muscles. Using magnesium oil on your legs or taking Epsom salts baths might relieve some of the discomfort.

 

[LaurafromCT]

When I take SSRIs I feel horrible. I feel like I have the flu. When I took the 10 mg last week I had no idea what I was doing. I hadn't read everything on these forums. I am desperate to resolve this terrible leg pain. It has been going on for 5 months. I thought the Prozac would "self taper" or something. I didn't feel better or worse immediately but I did start feeling the flu like symptoms. 

 

I took another 2 mg of Prozac 2 days ago and I felt terrible the next day. I mean really bad.  Then yesterday evening I took 0.5 mg and today I feel even worse. I woke up at 4am feeling like I was going to die. I can't really describe it. It's like nausea plus feeling like I am going to pass out, plus feeling shaky. I don't think I can take any more when it makes me feel so bad. Or maybe I can micro dose and take 1 drop.

 

Here are the reasons I think my leg pain is SSRI related:

 

1. Zappy nerve-storm feeling in addition to pinchy pain and what feels like muscle cramps 

2. No other medical diagnosis makes sense 

3. It all started right around when I went off SSRIs 

 

Reasons it might be something else, non SSRI related:

 

1. It hasn't gotten any better over 5 months. If anything, it has gotten progressively worse. No windows and waves.

2. My brain zaps went away over time in a normal gradual progression. I thought my body had recovered. 

3. I haven't experienced any negative psychological effects (except I do cry very easily). 

 

The last med I was on before using Prozac to taper was Imipramine (tricyclic). I wonder if I should try a tiny dose of that. I think I was on 75 mg last fall. I wish my psychiatrist was on board with this. 

 

When I feel better I will try and type up my medication history and taper info. Any ideas would be appreciated. I am super mystified about this!!!!

 

[LaurafromCT]

I have started magnesium but it's not helping really.  It's like all of the nerves in my legs are on fire and angry at me.

 

I wish I could know for sure whether this was from withdrawals or not.  And whether I should try reinstating imipramine?

 

Can anyone read my last post and let me know what you think?  Is anyone out there?

 

Thank you ☺️

[Altostrata]

If magnesium makes you feel worse, stop taking it.

 

On 9/3/2019 at 9:25 AM, LaurafromCT said:

Here are the reasons I think my leg pain is SSRI related:

 

1. Zappy nerve-storm feeling in addition to pinchy pain and what feels like muscle cramps 

2. No other medical diagnosis makes sense 

3. It all started right around when I went off SSRIs 

 

Reasons it might be something else, non SSRI related:

 

1. It hasn't gotten any better over 5 months. If anything, it has gotten progressively worse. No windows and waves.

2. My brain zaps went away over time in a normal gradual progression. I thought my body had recovered. 

3. I haven't experienced any negative psychological effects (except I do cry very easily). 

 

The zappy feelings might be related to the well-known withdrawal symptom called parasthesia.

 

Withdrawal symptoms usually come in waves and windows, but not always. Brain zaps are usually an acute symptom, other withdrawal symptoms evolve later.

 

Withdrawal syndrome is not a psychiatric condition and may not include "negative psychological effects."

 

If your symptoms started after you went off the drugs, it's likely they are withdrawal-related, although it is possible you developed a coincidental medical condition.

 

I am sorry you did not have a good result with your Prozac experiment. Prozac has a long half-life, so when you added the later lower dosages to the initial 10mg dose, you were building on it.

 

The last time you took Prozac (0.5mg) was Monday. Since then, how have your symptoms changed?

 

Have you tried acupuncture, massage, chiropractic, or osteopathic manual treatment for the leg pain?

 

 

[LaurafromCT]

1 hour ago, Altostrata said:

Have you tried acupuncture, massage, chiropractic, or osteopathic manual treatment for the leg pain?

 

 

Yes all of the above. It seems like PT and massage make it worse. Acupuncture has helped with nausea and generally feeling crappy.

 

Since my last dose of Prozac, my feeling sick in the morning symptoms have been decreasing slowly each day. I am feeling the same way I did when I first went off Prozac: mildly headachey, ears ringing slightly, small intermittent brain zaps. My legs feel the same or worse. It's hard to quantify.

 

I finally realized yesterday that my psychiatrist replied to my email 2 weeks ago and I missed it in my inbox (ugh). He said:

 

"With this time passed, I'm very concerned that your symptoms don't seem likely due to the SSRI issues. They're too specific, isolated, and constant.  I would expect the 'withdrawal' to be non-specific, generalized, and migratory. "

 

I have yet to ask him exactly what that means.

 

What do you think about reinstating imipramine?  I am wondering if stopping the tricyclics is that different from the SSRIs?

 

And thank you so much Alto for all you do, answering me and everyone else. It's very generous of you to share your time and experience. 

[LaurafromCT]

I think my leg pain is definitely getting worse over time. I wonder if this all is from discontinuation of Abilify. I seem to remember having restless legs after trying to go off it before. But it doesn't make sense that I would be getting worse and worse. Anyone have problems like this going off Abilify?

[LaurafromCT]

Topic title:  Symptoms getting worse over time (nerve/muscle pain)

 

Has anyone had withdrawal symptoms which have gotten worse over time? I have developed leg pain in both legs which feels like nerve pain. It started right around when I discontinued the imipramine and Abilify (fast taper) last December. But instead of getting better (windows and waves) it is getting progressively worse. It's also worsened by exercise. It wasn't too bad earlier this year but now I can barely walk at this point. Maybe I have some mystery illness and it's not related to the discontinuation. The doctors are mystified. They have ruled out almost all probable causes. Anyone else have something like this?

 

Edited September 14, 2019 by ChessieCat
added topic title

[Lloyd]

The burning, tingling has definetley gotten worse for me. Almost 2 years out now from stopping the Effexor. 

[LaurafromCT]

Wow... did you try reinstating? It looks from your signature like you did. Have you found anything that helps? One Dr suggested that I try Lyrica but I am very hesitant. 

[ChessieCat]

Lyrica aka pregabalin.  From the Tips for Tapering Pregabalin topic:

 

On 6/6/2012 at 12:30 PM, Altostrata said:

 

Lyrica is a GABA-ergic drug related to Neurontin (gabapentin) but, like Neurontin, with an action different from the benzodiazepines.

It is often prescribed for fibromyalgia and other pain syndromes. In Europe, it has been approved to treat anxiety.

One of its side effects is sleepiness or, during the day, grogginess.

Half-life is about 6 hours.

Like other drugs that act on the nervous system, long-term Lyrica may incur a withdrawal syndrome and must be tapered to protect the nervous system.

 

 

non-drug-techniques-for-dealing-with-body-pain

 

It might be better to make a very tiny dose reinstatement of the last drug you were taking instead of trying a new one.  I will ask the other mods for the assistance.

 

 

 

 

[Altostrata]

On 9/8/2019 at 2:43 PM, LaurafromCT said:

"With this time passed, I'm very concerned that your symptoms don't seem likely due to the SSRI issues. They're too specific, isolated, and constant.  I would expect the 'withdrawal' to be non-specific, generalized, and migratory. "

 

Very few psychiatrists know anything about tapering, much less post-acute withdrawal symptoms. Your psychiatrist is not one of them.

 

On 9/8/2019 at 2:43 PM, LaurafromCT said:

Since my last dose of Prozac, my feeling sick in the morning symptoms have been decreasing slowly each day. I am feeling the same way I did when I first went off Prozac: mildly headachey, ears ringing slightly, small intermittent brain zaps. My legs feel the same or worse. It's hard to quantify.

 

 

When was your last dose of Prozac? How many mg was it? Since then, was there any day that was better? Do you recall which one?

[LaurafromCT]

I finally met with my psychiatrist and he prescribed 10mg tabs of imipramine to try reinstating. I took 1/4 tablet last night (2.5 mg) and I think preliminarily that my legs feel better! I definitely don't have the "morning sickness" I had been waking up with every day since trying to reinstate Prozac.  I am cautiously optimistic. I do feel a bit wired, it's 5 AM and I am wide awake. My last dose of imipramine was (I think) maybe 12.5 mg back in December. Unbelievable.

 

I think my next step is to get him to prescribe a smaller dose in case I need it. Like a liquid from a compounding pharmacy. I think 2.5 mg might be too much. I really hope this works!!!

 

Edited September 18, 2019 by ChessieCat
removed blasphemy

[LaurafromCT]

Wow!!!!!  Day 2 of reinstatement and I probably feel 50% better. It's like a miracle. Last night I took about 2 mg (the compounding pharmacy wasn't ready yet).  I know that nobody here is surprised but I am flabbergasted that I had so much leg pain, and it was getting worse and worse!!!  Today I can feel my legs prickling and zapping but it's almost like they are coming back online. I pray that I can stay on a low dose long enough to heal and then taper off.

 

Thanks for all the help and advice. 

 

[Eastcoastgirl]

I have the same problems with my legs since Prozac. It comes on when I stop or restart the Prozac, even at small doses. If I leave everything alone long enough it goes away. 

[LaurafromCT]

The experiment with reinstating the imipramine failed.  Ultimately I became extremely sick (flu like symptoms) like I always do I stopped the imipramine about 5 days ago.  I wake up every morning at 5 am feeling incredibly sick.  I lie there fighting the sickness and nausea for several hours.  Usually it goes away by 8 am.  My legs and sciatic pain are still bad, although I think the pain did improve about 15% when I was taking the imipramine,

 

My Dr suggested I try oxcarbazepine (Trileptal) because that might "calm my nerves down".  I have taken 37.5 mg per day for the last few days.  I don't think it's agreeing with me.  it is making my "morning sickness" worse.  Maybe the dose is too high.  Has anyone tried oxcarbazepine?

[LaurafromCT]

I am now taking a micro dose (0.04 mg) of imipramine as well as the 37mg Trileptal. I seem to have plateaued at this point. I am about 30% better from where I was.

The Trileptal might be helping but I am not sure. I tried Gabapentin for a few days but it made me feel weird so I stopped it. My next plan is to switch to a micro dose of Celexa or Lexapro because that was what I was taking for years. I don't know what else to do. I'm not experiencing windows and waves. Just stuck in pain. My leg pain changes daily. It goes from zappy to throbbing, aching, stinging, tightness, itchy, prickly, and raw.

 

It seems like every time I change meds even a tiny bit it makes my "morning sickness" worse. I am wondering if I should get my cortisol levels checked. 

 

 

[Emma7855]

Hi @LaurafromCT -- How are you doing with the Trileptal? My doctor's having me take it in order to calm my central nervous system. Do you think it's been helpful for you? Thanks so much

[LaurafromCT]

I am definitely feeling better now after reinstating the imipramine and taking Trileptal. Unfortunately I can't tell you which contributed to my getting better because I started them both at the same time. I am on a very low dose of Trileptal. Still taking about 37 mg per day. I bought a small gram scale and I weigh the pill. I am also still taking 0.04 mg of imipramine. I think I posted earlier that I was taking 0.4 mg but it's actually 0.04 mg.  I seemed to turn a corner about 3 weeks ago and my legs just started feeling better. I still feel zappy in my body and brain and I have leg pain but it's not as bad. I have read that Trileptal has an "anti kindling" effect. I wish I had a more definitive answer. 

[LaurafromCT]

I wish I could change my topic because I'm not off SSRIs. I am in a kind of reinstatement purgatory.  I am currently taking 0.036 mg imipramine which I find myself unable to decrease and my quality of life is pretty bad.  To recap my situation:

• took SSRIs for 25 years
• they made me sicker and sicker.  Felt like slow motion serotonin syndrome (constant flu) which got worse and worse
• switched to imipramine (tricyclic) for about a year.  developed "serotonin sickness" again -- very bad, very sick
• Did a fast taper/bridge/taper which ended about 1 year ago
• Soon after last dose, developed muscle/leg pain which got worse and worse over the course of 5 months to the point of almost total incapacitation (no other possible reason than SSRIs)
• 6 months ago I reinstated imipramine.  Realized that the highest dose I can tolerate is about 0.04 mg per day 
• 5 months ago added Trileptal 0.37 mg (anticonvulsant).  Saw some improvement (~50%) in mobility over 3 months.  Possibly from imipramine possibly from Trileptal
• About 2 weeks ago I discontinued the Trileptal because my side effects and pain seemed to suddenly get much worse.  Maybe it was just a wave, I don't know.
• Since discontinuing the Trileptal I think my legs are getting a bit worse.

I am now trapped in this holding pattern of taking my micro dose of imipramine every day and dealing with terrible pain and side effects.  The symptoms have been pretty consistent for months:

• Wake every morning at 3, 4, or 5 am feeling nauseated, skin crawling, jumpy, sick, like a migraine in my whole body.
• Brain feels semi zappy all day, brain full of bees. Head in a vice. Ears ringing constantly. Brain feels glittery, tingly. Hard to focus.
• Leg pain, muscle cramps, exercise intolerance, can't sit for very long, broken glass feeling in leg nerves, can't walk more than 10 yards at a time
• Legs feel zappy, prickly, made of wool.  Benign fasciculations: muscles twitching, tingling
• My whole nervous system feels overloaded with electricity. I feel like my legs are plugged into an electric socket.

So basically I have tried reinstatement for about 5 months and have only improved about 50% when I seem to have hit a plateau and actually got worse recently.  I don't know if I can expect further improvement on this course.  I have tried tapering down to as far as 0.034 mg and it seems that 0.036 mg is about as low as I can go without worse side effects and brain zappy feeling.  It's so hard to tell if I am doing better or worse on a day to day basis.  I don't even know if my brain can begin to heal if I'm still on the drugs.

 

I feel like my options right now are the following: (opinions welcome)

1. hold imipramine at micro dose and wait patiently for another X months and hope I get better and don't get worse
2. hold imipramine at micro dose and reinstate trileptal (but that combo wasn't really working for me over time)
3. hold imipramine at micro dose and try Lamictal (another anticonvulsant) which I know worked for @Altostrata
4. (more risky) bridge from imipramine to micro dose Lexapro, which is the drug I was on for the longest time.

I feel like bridging to Lexapro might be my best bet but it feels risky.  Obviously since I am feeling all of these side/effects from 0.036 mg imipramine, my CNS is SUPER sensitive to medication.  My Dr does not really have a good answer for why that is or what it means. 

 

Random questions which if someone could answer even one it would be amazing:

1.  why is my brain so reactive to thousandths of a dose?
2.  why did my leg pain get worse over time and not better (there's no answering that one, just asking the universe)
3.  can the brain heal during reinstatement?
4.  do people in reinstatement still experience windows and waves?

Thanking you all in advance for any light you can shed.

[Altostrata]

Hello, Laura. What time of day do you take imipramine? How do you feel before and after you take it?

 

Do your symptoms follow any daily pattern?  Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. You can post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

Have you had a check-up blood panel recently, with magnesium, potassium, vitamin B12, vitamin D, and thyroid levels?

 

[pinciukas]

13 hours ago, LaurafromCT said:

• can the brain heal during reinstatement?
•  do people in reinstatement still experience windows and waves?

 

I believe that brain can somehow adapt to reinstatement. I have tapered down form 20 mg Seroxat for 18 months felt bad under 10 mg tapered down and at 5.5 mg I crashed really bad. Then I did reinstatement to 9 mg and doing good. I feel the same like on 20 mg. I believe my brain just adapted to lower dose. Our brain is very powerful and I believe that brain can sort out those things.

I don’t know about waves and windows because I am only 1.5 month on higher dose so can’t say much only that i feel good.

[LaurafromCT]

15 hours ago, Altostrata said:

Hello, Laura. What time of day do you take imipramine? How do you feel before and after you take it?

 

Do your symptoms follow any daily pattern?  Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. You can post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

Have you had a check-up blood panel recently, with magnesium, potassium, vitamin B12, vitamin D, and thyroid levels?

 

I usually take it at 7am daily.  Usually at this time I am experiencing my "morning sickness" which wanes throughout the morning.  But I have taken it at different times (e.g. forgot to take it until pm)  and I never noticed a big difference before and after taking it.  I think it takes a while to take effect.  I change the dose slightly, it takes 1-2 days to feel the difference.  I feel like when I increase to 0.036 mg my legs feel better but I feel wired and overmedicated and can't sleep.  If I go down to 0.034 mg, my legs hurt more but I don't feel as wired and my brain not as tingly.

 

I recently had a bunch of bloodwork done but I am waiting for the results.  Last fall I had a lot of bloodwork done (my symptoms were the same) and everything was normal.

 

My average  day's symptoms (lately) go like this:

 

4:15 AM  Wake up, feel sick and shivery, awful, jumpy, sometimes hot.  Take benadryl, tylenol, 1/4 caffeine pill (seems to fix shivers), sometimes 0.125 mg klonopin depending on how bad I feel

5:00 AM  Sometimes I take a bath.  Usually I can get back to semi-sleep

6:00 AM  Wake up again, feeling sick shivery etc. sometimes get back to semi-sleep

7:00 AM  Get up to give my cat his shot.  Feel shivery, a bit sick.  Take imipramine.  Lie back down 7:15

8:00 AM  Make some coffee, starting to feel a bit better. Legs start to hurt

9:00 AM  Sometimes eat breakfast, sometimes feel too nauseated to eat much

10:00 AM  Still feeling shivery, legs achey, weak

12:00 - 1pm - sometimes have appetite for lunch, sometimes just a snack, sometimes nothing

1pm - 5 pm  Legs uncomfortable, pain is achey, stingy, prickly.  Pain is tolerable during this time.  Pain level 2-4.  Can usually get some work done

6:00 PM  Legs start to feel worse, maybe from being up and around all day.  Aching, stinging, tightness. Pain level 3-6

6:30 PM  I usually take a bath to relive leg pain

7:00 PM  eat dinner, usually have a decent appetite.  Brain feels more tingly at night. Semi-zappy.  Ears ringing more

8:00 PM  Lie on couch watching TV.  Legs are zappy, electrical, feel like they are full of elecrtrical current. Pain level 2-3

10:00 PM  Sometimes I can go to bed/sleep without taking anything but usually feel wired/brain zinging.  Take a benadryl and/or melatonin, 0.125 mg klonopin sometimes

11:00 PM  Sleep

 

I am taking 1000 mg of Tylenol at a time between once and 4x per day.  if it gets really bad I add ibuprofen

I am supplementing with Carlson high omega fish oil, a probiotic (just re-started these recently), and a generic multi-vitamin with B

 

I do have a trick to get back to semi-sleep when I feel sick in the morning.  If I put on NPR or a boring video very low on my phone and listen to that, I can semi-sleep while semi-listening to the talking. It lulls my brain somehow.

[LaurafromCT]

Feeling super electrical and zappy this week. Any thoughts on my path forward? 

[LaurafromCT]

I am talking to my Dr. tomorrow. Going to discuss these two options:

1. hold imipramine at micro dose and add Lamictal (another anticonvulsant) which I know worked for @Altostrata
2. (more risky) bridge from imipramine to micro dose Lexapro, which is the drug I was on for the longest time.

I don't think I am doing great on imipramine. I still wake up nauseous although I have been sleeping until 6 lately. My brain feels full of tingly bees all day. My legs are extremely uncomfortable and I can't walk around much more than a few yards or sit much. Legs feel like pins and needles most of the day.

 

Pros of adding Lamictal: less drastic change. Could calm down electric feeling and pain. Cons: adding another drug adds complexity. 

 

Switching to Lexapro would be a big step. In theory I could maybe go back to imipramine if it doesn't work. Possibly could make me very sick. But I still think that my brain got warped by 15 years on Celexa/Lexapro so maybe that is the path back to ok.

 

Appreciate any thoughts. 

[LaurafromCT]

I feel like I am talking to myself but I guess I will just keep posting. I got my Dr to write a Rx for lamictal 1 mg per ML but am scared to try it. This week I am going to try increasing the imipramine a tiny bit. Usually when I do that I feel like I can't think because my brain is full of a million bees. My legs feel like they are full of pins and needles all day long and I still can barely walk. It's been almost a year since I started dealing with all of this. Such a terrible situation. 

[LaurafromCT]

I hope that @Altostrata or one of the mods can help me decide what to do. I am so depressed and scared that I will never get better.  I summarized everything on February 10th. I am weighing the risks of switching to Lexapro or adding lamotrigine (lamictal). I answered your questions on February 11th. My blood work came back all normal.

 

I tried increasing the imipramine 4 days ago from 0.036 mg to 0.038 mg and that made me feel so awful (my brain felt like it was in a vise. Paradoxically it gave me a constant brain zappy feeling) . I am so extremely sensitive to these drugs. I went back down to 0.036. It doesn't matter what time I take it. Usually it takes 1 to 2 days for me to feel the effects of a dose change.

 

Switching to Lexapro would be like jumping blindfolded between trains in the dark. No way of knowing the dose. I mean, I did a calculation on paper to get the equivalent micro dose to what I'm taking on imipramine. But who knows how it would affect me. Part of me thinks that my brain would welcome a break from imipramine which is definitely not agreeing with me. My old psychiatrist told me that imipramine was a "dirty" drug. My tinnitus is through the roof. It's inside my brain like a fizzy feeling.

 

I asked my current psychiatrist about switching to Lexapro or adding Lamictal and he said it would just be a guess which to try. He is extremely smart and helpful but no experience with my level of withdrawal syndrome. He did write me Lamictal 1 mg per ml solution.

 

Option 3, I could try and stay the course for another month of side effects and feeling awful, in the hopes that something might change. But I feel like after almost 5 months on the imipramine I gave it a good shot and am getting nowhere. It's not even an SSRI. It's a tricyclic, which I started taking as a last resort because I couldn't tolerate SSRIs anymore.

 

If you suggest questions I could ask my doctor, he has extensive knowledge of receptors and neurotransmitters as well as patience for explaining it. He's highly regarded and will respond to emails.  But as we all know, the moderators here know 10x more than the best psychiatrists about withdrawal.

 

Thank you in advance.

[Altostrata]

On 2/10/2020 at 8:40 PM, Altostrata said:

Hello, Laura. What time of day do you take imipramine? How do you feel before and after you take it?

 

Do your symptoms follow any daily pattern?  Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. You can post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right.

 

Have you had a check-up blood panel recently, with magnesium, potassium, vitamin B12, vitamin D, and thyroid levels?

 

 

Hello, Laura. See above. What I need to see is your actual drug schedule and symptom pattern, 24 hours at a time, not a general outline.

 

You went off Trileptal in mid-January, have your symptoms gotten progressively worse since then?
 

Quote

 

2019 - Jan - bridge to Prozac. taper from 10 mg to 1 mg over 3 months.  Last dose end of March (alternating days)

2019 - March experience brain zaps but not too bad. They eventually go away in April/May

2019 - March - August - I developed leg/nerve pain which became increasingly debilitating over time. Saw a ton of doctors. No physical explanation. Drs rule out MS, fibro, neurological issues.  MRIs, xrays, chiro. 2019, September - Leg pain has worsened to where I can barely walk across the room.  Reinstate imipramine at 2 mg

 

 

How did you feel when you were taking Prozac?

[LaurafromCT]

Thank you so much for replying Alto.  I posted a typical day's symptom pattern hour-by-hour and what drugs I am taking on February 11th, did you want more than one day's symptoms?  I take the imipramine at 7am every day (that's the only Rx) and then various OTC/PRN stuff throughout the day as described.  Most days my symptoms follow the same pattern although I have good and bad days.  If I did it wrong please explain what is needed.  I am also taking the following supplements daily: Carlson's Fish Oil caplets, Alpha Lipoic Acid supplement for neuropathy, probiotic, turmeric.

 

How did I do on Prozac?  That's a really good question.  I will have to look back at my notes because I want to provide a really good answer.  I also want to give some thought to whether I am better or worse since d/c the Trileptal.  It's so hard to quantify "better" when my symptoms change from day to day and also I don't have good vocabulary to describe the bizarre sensations in my body.

 

Please let me know what is needed to improve the symptom diary.

[Altostrata]

I need actual daily notes of drug schedule and symptom pattern, 24 hours at a time, rather than a "typical" pattern. Thanks.

[LaurafromCT]

 

On 2/24/2020 at 2:09 PM, Altostrata said:

You went off Trileptal in mid-January, have your symptoms gotten progressively worse since then?

 

How did you feel when you were taking Prozac?

 

I definitely feel worse since stopping the Trileptal. Maybe not progressively worse day over day but worse. I feel more electrical and zappy. My brain feels like it's ringing and tingling. My leg pain feels more prickly and stingy.

 

I felt ok taking Prozac, but it was for a very short period of time, about a year ago.  Maybe for a month, at a low dose to taper. My notes said that I felt "activated" and my neck hurt.

 

Re: symptoms over time, I have it all written down, how many days worth of data should I post? Also is it better in a table format?

 

I am feeling really terrible lately, I feel like I need to change something soon 😞

[Altostrata]

Why not take a bit of Trileptal again?