NeDaytoDayMJ: 24 days after quitting Lexapro feeling worse symptoms

[deg1979]

My husband and daughter take Topamax. My husband takes it for vestibular migraine—25 mg AM and PM. My daughter has bipolar disorder and takes it to counteract some symptoms of another med (Rexulti) she takes, and it happened to help her anxiety a lot. She takes 100 mg at night. Both of them say it causes cognitive decline. They are forgetful, they often feel they think much slower than they normally do, but they keep taking it because it is treating conditions that are worse than the side effects. I believe it is in the anticonvulsant category. I don’t know how bad your headaches are, but I don’t think I would try it if I were you. If your nervous system is already frazzled, it could upset it more.
 

Have you read the book Heal Your Headache, by neurologist David Buchholz? He has a migraine diet he prescribes first before medications. The idea is to remove as many triggers as you can so that you can eliminate them without meds or with as little meds as possible. He defines migraine as the swelling of blood vessels within the brain, which causes different symptoms depending on where the swelling occurs. I seriously wonder if many of our symptoms in WD are connected to some kind of inflammatory process that occurs within the brain during withdrawal. I started the migraine diet recently with my husband to help him lower his migraine meds and to see if it could help me in recovery from an adverse reaction to Lexapro a couple months ago. It really isn’t that bad, and there are some blogs and cookbooks with migraine-safe recipes that make it even easier. 

[NeDaytoDayMJ]

Hello deg1979,  thank you for the information on your family taking the topomax.  I feel like I already have some cognitive decline so that is that last thing I want.  The headaches are bad but they are also manageable.  I’m leaning towards not taking the topomax.  
I will check out the book Heal your Headache.  Have you noticed any improvements yourself?  It wouldn’t hurt to start eating healthier.  Thank you.  

Alice1 thanks for input.  

[deg1979]

I initially read the book to help my husband, but after reading it I realized I, too, experienced migraine activity. The author defines migraine activity as the swelling of blood vessels that can cause pain in the head and neck as well as myriad symptoms when the swelling is in the brain. I realized I also had migraine activity. I have chronic neck soreness that leads me to crack my neck often. It started in the last couple years. Since I started doing the diet, my neck did stop cracking and is not as sore. Granted, I’ve only been doing it 2-3 weeks, and they mention it can take a month or two just to really get the diet down. I ate out a couple days, and today my neck pain is back. It’s all a trade off, but it is empowering to find what triggers migraine activity for you. The author also thinks nearly all headaches are due to migraine activity. The diet is basically no caffeine, no chocolate, no MSG, nothing cultured, aged, or fermented, some fruits are excluded—mainly citrus and tropical, some beans are excluded, but not common ones in our culture. Soy is excluded. That’s most of it. Alcohol also. The idea is to stick to it for 3-4 months, but then you can begin to add things in one thing at a time, watching for symptoms in the next 72 hours. One exception is caffeine; the dr thinks caffeine won’t benefit anyone who has migraine activity (which is basically everyone, according to him). Also, he believes there are many migraine triggers other than diet, but we often can’t control those factors—things like fluorescent lighting, barometric pressure changes, etc. Diet is one thing we do have some control over. Most of his patients find several triggers they then can choose to avoid if they choose—it’s all in your control then. The book kind of resonated with me from an anxiety standpoint, as well. I feel I’m doing the same thing with my post adverse reaction syndrome. Finding what triggers symptoms and then using that knowledge to make choices. 

[deg1979]

Also, if you just google “vestibular migraine diet,” you can find several blogs and info sources if you don’t feel like buying the book! The book goes into detail about drugs to treat headaches after doing the diet. And prior to the diet, he has patients get off benzodiazepines and opiates, also Excedrin and anything else that is causing rebound migraines. Basically he gets them down to ibuprofen, acetaminophen, or aspirin. 

[NeDaytoDayMJ]

That’s some excellent information.  I will have to google this for sure.  I’m sure eating healthier can not only possibly help with headaches but also my overall lifestyle.  

I get worked up too easily by reading things on the internet and feel like this contributes to my stress and anxiety.  It’s a fine line though as I want the best information out there.  I appreciate the information!

[getofflex]

On 11/16/2021 at 2:39 PM, NeDaytoDayMJ said:

Either way she prescribed me topomax and from what I have read it could be hard to get off that drug also.  Though it is suppose to help with the headaches.  She prescribed this as she normally prescribed antidepressants for headaches.  So is this something that is okay to take or stay away from?  Thanks!

I took Topamax many years ago for migraine, but I only took it on occasion.  It caused no problem for me.  I also took it before I had any psych meds to deal with, so I don't know how it will affect your nervous system in withdrawal.  I would be really careful going on another drug.   I would do a google search on "survivingantidepressants.com topamax", and see if there is anything on here about it, and then search google about it.  Here is another member's experience with Topamax: 

 

Misstree Topamax Had Turned my Life into a Nightmare

[NeDaytoDayMJ]

Thank you getofflex.  It seems like its a tough call.  I've heard good and bad on topomax.  Alot of people complain about cognitive decline though.  That's the last thing I need.

 

@Altostrata  I was hoping to get another opinion on the topomax as it's a pretty important decision.  Do you mind providing any insight? 

 

Quick summary I have been at .5 mg lexapro (reinstatement) since mid Aug.  Mid Sept I started having bad tension headaches nonstop daily about 4-5 out of 10.  I still have them everyday til today.  I also feel anxious, some small crying spells, head pressure, and some cognitive decline.  I had covid mid Oct but only 2 days fever, fatigue and small congestion.  I went to a neurologist two days ago who said it might be due to withdrawal and would like a second opinion with neurology dept.  Meanwhile she prescribed me topomax that she wants me to take.  I'm hesitant to take and would appreciate any help.

 

[NeDaytoDayMJ]

Another crappy headache and dizzy weekend.  I know it seems like I come on and post only when it’s bad.  I’m sad now and crying.  I just want to be normal like before.  I want my old life back.  I’m not taking the topamax yet.  
I understand it is a process but I barely get any windows.  There might be a window for three hours max twice a week at night.  That’s it.  I need more windows I need more hope.  

[deg1979]

@NeDaytoDayMJ, how are you doing? Have things improved at all?

[NeDaytoDayMJ]

Hi @deg1979 I’ve found a tad bit of relief. I haven’t done anything different. I am looking forward to starting to eat better.  It’s been rough with the holidays.  I can’t seem to pinpoint why some days I feel terrible and others I feel not good.  I’m still waiting for a normal day but I fear it will be awhile.  Thank you for checking up on me.  I have an appt with neurologist team Dec 17th.  I’m not taking the topamax.  I’m not going to give my body more drugs.  
How have you been?  

[Carmie]

41 minutes ago, NeDaytoDayMJ said:

Hi @deg1979 I’ve found a tad bit of relief. I haven’t done anything different. I am looking forward to starting to eat better.  It’s been rough with the holidays.  I can’t seem to pinpoint why some days I feel terrible and others I feel not good.  I’m still waiting for a normal day but I fear it will be awhile.  Thank you for checking up on me.  I have an appt with neurologist team Dec 17th.  I’m not taking the topamax.  I’m not going to give my body more drugs.  
How have you been?  

Hi NeDaytoDayMJ, 

I’m sorry you get so many headaches, but it’s good to see that you’re starting to feel a bit better. It must be awful having headaches all the time. 
 

I hope you stabilise soon and see some windows. I’m only tapering small amounts, but still go through windows and waves. There’s so escaping the waves, with each drop our brain has to find some kind of equilibrium again. 
 

Sending hugs🤗

[deg1979]

@NeDaytoDayMJ, I’ve been OK. I’m starting to get some insight from me food journal. Much to my dismay, dairy seems to be a no go for me. When I eat it, I wake up with a headache feeling like I have a hangover! I also have a major reaction to MSG. It’s sneaky. I usually notice the biggest effects after takeout. 
 

I know food is the last thing people feel like focusing on when they’re struggling. We’re already overwhelmed! I could tell some things were bothering me, but I couldn’t tell which ones. I have been keeping a food journal in a typical composition notebook, but for December I’m switching to a blank calendar on a sheet of paper, because I think it’s easier to get a visual of food intake and then symptoms. I guess you watch for symptoms for 72 hours after a food. 
 

I did this migraine-free Thanksgiving meal plan done by my favorite Migraine diet blogger—TheDizzyCook—but it gave me horrible problems, because I am lactose intolerant and only soft, fresh cheeses uncultured dairy are allowed on the diet. Hopefully it worked for my husband! (We’re not really close at the moment.)

[Jennings]

It's the Lexapro withdrawal causing the headaches and the dizziness.  

 

I've been dealing with them since I've been off.  I used to get them but not as bad when I was on Lexapro and I had maybe 4 or 5 headaches in my life.

 

If I were you I would try to not take the Topomax if you can help it.

 

I have two friends irl who both are on Lex and they both had to get on Topomax for the headaches.  Now they are stuck on it.

[NeDaytoDayMJ]

On 11/30/2021 at 10:57 PM, Carmie said:

Hi NeDaytoDayMJ, 

I’m sorry you get so many headaches, but it’s good to see that you’re starting to feel a bit better. It must be awful having headaches all the time. 
 

I hope you stabilise soon and see some windows. I’m only tapering small amounts, but still go through windows and waves. There’s so escaping the waves, with each drop our brain has to find some kind of equilibrium again. 
 

Sending hugs🤗

@CarmieThank you for the kind words.  It’s very nice when people stop by to give some positive remarks.  I need them!

@deg1979Wow that is crazy the dairy is giving you the headaches.  I’m sorry your restricted to certain foods.  I suppose I might be as well for a short period.  I’m digging the calendar idea.  Did you buy one or make it yourself?  The dizzycook huh?  It’s pretty awesome that people share all this information.  I feel blessed.  We are going to make it through this.  
@Jennings Thank you for reading and affirming the symptoms are from Lexapro.  The validation is what helps fight through tough days.  I appreciate the extra insight into the topamax.  Im staying away!

[deg1979]

Well, I think it is dairy. Not sure. Still tracking. Hoping I can still eat cheese. I just printed out a blank month’s calendar online, so it’s just a single sheet of paper. I leave it on my dresser so I see it and remember to chart. Then they go in a folder, so I know where they are when I want to look back at them. 

[Carmie]

Hi @NeDaytoDayMJ

 

Thanks for popping over to my thread. I hope you are coping okay with the day today🧡

[NeDaytoDayMJ]

Over the weekend Saturday I went out and about shopping with my girlfriend and I got very dizzy and had head pressure.  I felt like I might pass out at some point.  She gave me an acupuncture treatment that helped for the remainder of the day.  
I’ve been in situations  shopping we’re I just feel horrible walking around.  It is so frustrating because it’s a fun thing that my girlfriend and I like to do.  
The past weekend was pretty brutal.  It was a bad wave.  I want a window.  I want to be fully happy and normal again.  I did move down to .35 mg a week ago.  I’m just tapering down without any stabilization.  I’m going to quit no matter what on January 15.  No topamax.  No other drugs.  I hate them. 
I just have to make it day by day here and hope for the best.  My birthday is coming up in a couple weeks and Christmas.  I hope that I can have a decent day as I know my girlfriend has some fun plans.  
 

[getofflex]

On 12/7/2021 at 12:36 PM, NeDaytoDayMJ said:

The past weekend was pretty brutal.  It was a bad wave.  I want a window.  I want to be fully happy and normal again.  I did move down to .35 mg a week ago.  I’m just tapering down without any stabilization.  I’m going to quit no matter what on January 15.  No topamax.  No other drugs.  I hate them.

It's your choice what you do with your drugs.  By now, you probably already know what the consequences of your actions will be.  Tapering down without stabilizing may affect you for months or years to come.  

[getofflex]

Too Fast Tapers

[NeDaytoDayMJ]

I understand the consequences.  I reinstated three months ago and found no relief.  I still get the headaches, head pressure, and dizziness.  At .5 mg for 3 months I would think I would have stabilized.  
There is no guarantee that updosing to 1 mg would have helped.  It seems like with the updose I would have just needed to taper off longer and be miserable longer. 
I think my brain is still processing the ct from 2.5mg.  Now I’m feeding the brain  less drugs and less drugs with taper.  I would think even without stabilizing my brain is adjusting and getting used to the lower doses and when I do quit the withdrawal symptoms will not be as bad as a ct.  

I am hoping that is the case.  No one knows.  
What would you recommend I do now?  
I am super grateful for your insight and the website itself.  It has helped so many people.  Thank you. 
 

[Altostrata]

You reinstated 0.5mg Lexapro in August, 3 months later, you were feeling better, then you started reducing Lexapro on November 16?

 

If you had a headache while taking Lexapro, it might have been from the Lexapro, or it might have been because 0.5mg Lexapro is a very low reinstatement and you might have done better by increasing the dosage, not decreasing it. We would have asked for your daily symptom pattern to ascertain if this was a good idea.

 

Many 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/

 

Magnesium in particular can help headaches. You might try a little bit of one at a time to see how it affects you. 

 

On 11/9/2021 at 5:45 PM, NeDaytoDayMJ said:

I’m doing better than before.  I am able to get out and about more without feeling absolutely horrible.  I still have head pressure, disorientation, smaller headache but I feel the worst might be behind along with the covid symptoms.  I’m probably dealing with an overall 5 out of 10 discomfort level.  While before it was 7 out of 10.  I long for the day to be at 0.  I’m reading it can take people 3 years to adjust and that is bothersome.  
I’m thinking about long term getting off the drugs and I’m just confused.  I’m leaning towards taper down now and get the worst out of the way.

....

 

Are you feeling worse since reducing Lexapro starting November 16? If so, you've revived your withdrawal symptoms. We don't have any fix for this. If your symptoms get worse after a reduction, you'll have to deal with withdrawal symptoms. Are you sure you still want to go off?

 

You found acupuncture helpful for the headaches, why didn't you continue it?

 

 

[NeDaytoDayMJ]

11 minutes ago, Altostrata said:

You reinstated 0.5mg Lexapro in August, 3 months later, you were feeling better, then you started reducing Lexapro on November 16?

 

If you had a headache while taking Lexapro, it might have been from the Lexapro, or it might have been because 0.5mg Lexapro is a very low reinstatement and you might have done better by increasing the dosage, not decreasing it. We would have asked for your daily symptom pattern to ascertain if this was a good idea.

 

Are you feeling worse since reducing Lexapro starting November 16? If so, you've revived your withdrawal symptoms. We don't have any fix for this. If your symptoms get worse after a reduction, you'll have to deal with withdrawal symptoms. Are you sure you still want to go off?

 

You found acupuncture helpful for the headaches, why didn't you continue it?

 

 

@Altostrata

Thank you kindly for insight.  That is correct.  I feel as though I was feeling better before recent taper and I want to get off the drug ASAP.   Feeling better does not mean I have stabilized, I simply was not having terrible symptoms.

 

I am feeling worse since tapering on November 16.  It’s been on par with the worst times I’ve had through this withdrawal/reinstatement process.  

I still would like to go off drugs ASAP.  If I could get some type of percent guarantee that updosing would alleviate symptoms I would probably gamble at 80 percent chance of updose working.  Anything below that doesn’t seem worth it to me.  That’s even to say that updose is an option at this point.  

I realize the bed I have made.  I’m just sad.  Very sad.  It’s constant the dizziness and headaches.  I fear I will have to wait out the symptoms like before.  My plan is to keep taking this dose til Jan 1st.  Then taper one more time and quit.  I will continue with acupuncture. It helps at times and sometimes doesn’t.  
 

[Altostrata]

It I were you, I'd go back up to 0.5mg and stay there until the current spate of symptoms subsides. Depending on what happens, you may want to increase it to 1mg, as it seems after 3 months, 0.5mg was enough to eliminate some withdrawal symptoms, but not all.

 

We cannot tell you how long it will take to stabilize on 0.5mg or 1mg, or when you might start to go off. It depends on how you feel. 

 

We cannot tell you how long withdrawal symptoms will last if you choose to go off prematurely. This paper, which is based on cases on this site (I am a co-author), suggests protracted withdrawal lasts 2-3 years.

 

Hengartner, M. P., Schulthess, L., Sorensen, A., & Framer, A. (2020). Protracted withdrawal syndrome after stopping antidepressants: A descriptive quantitative analysis of consumer narratives from a large internet forum. Therapeutic Advances in Psychopharmacology. https://doi.org/10.1177/2045125320980573

[getofflex]

I know how badly you want to be off this terrible drug.  I understand, because at first I, too, wanted very badly to be completely off Lexapro.  Before I found this site, I was tapering way too fast, and had to do several reinstatements and updates.  Once I found this site, I eventually learned that the only way to get off safely was to take my time with tapering, and listen to my body.  Last year, I did a long hold, from April through August, so about a 6 months hold.  It was one of the best things I ever did.  I felt great, almost normal by August.  Then, my reductions after that became easier, and my symptoms were not as bad.  Think of the holds not as extending the time you are on the drug, but as making it possible for you to eventually jump off the drug successfully.  Alto knows what she is doing - she has helped thousands get off these drugs successfully.  Her advice is sound.  

 

[NeDaytoDayMJ]

  I’m committed to the plan.  I have always believed your words getoffflex it’s just I have been too stubborn to accept I will need to be on the drug for a longer term.  It’s frustrating to say the least.  I’m blessed to receive the guidance from both you and altostrata.
This is expert advice and the best I can do. I am very humbly grateful for everyone listening, acknowledging, and responding to my requests and updates.  I’m basically a stranger and people are helping.  It is so kind.  It’s the true human spirit.  
I took a .5mg dose this morning and will continue on this amount until the symptoms subside.  If they do not I will bump to 1mg.  
One last quick question if you don’t mind and I should be good for sometime.  How long do I stay on the current dose of .5mg waiting for the symptoms to go away?  Another month?  Three months?  Ideally I don’t want to be living with the head pressure, headaches etc.  Thank you.  

[Altostrata]

As we've requested many times, we need to see how you're doing in order to advise you on dosage increases!

 

You've been on 0.5mg Lexapro only one day. The dosage change take about 4 days to reach full effect. Then your system will need to stabilize, which may take some weeks or months, as it did before when you reinstated 0.5mg in August.

 

Please let us know how you're doing over the next week and weeks after that.

[getofflex]

On 12/11/2021 at 2:38 PM, NeDaytoDayMJ said:

How long do I stay on the current dose of .5mg waiting for the symptoms to go away?  Another month?  Three months?

You need to give your nervous system time to stabilize.  Instead of trying to pin it down and predict the future, lets just take things as they come, and listen to your body.  Wait until your symptoms subside, and are minimal to none.  Read this link to know what we mean by stability:  

 

Stability

[NeDaytoDayMJ]

I understand. I did have some relief Saturday and Sunday but we are back to feeling not so well today.  I will hold tight on dosage of .5mg and report back later.  

[getofflex]

19 hours ago, NeDaytoDayMJ said:

I understand. I did have some relief Saturday and Sunday but we are back to feeling not so well today.

Please remember, there is no magic fix for withdrawal.  There is a windows and waves pattern to it.  Many times, we need to tough it out, and wait for the wave to pass, and practice non drug coping techniques.  Try reading this: 

 

Considerations About Stability - Stop Jumping Around

 

[NeDaytoDayMJ]

Thank you for the insights and helpful information thelongestroadhome.  I hope you feel relief at some point.  It’s worrisome knowing it is still affecting you so long after quitting. 
Getofflex I appreciate the link.

Today, it’s not going well.  Man it sucks.  I had a great day Saturday and most of Sunday and now back to sad, headache, dizzy, and tired.  I can only hold out hope to feel like those two days again.  It was fantastic. 

I really hope I feel better the next two days as my girlfriend is taking me on a weekend adventure.   I would love to feel alive and share the time with her.  
I’m going to focus on the stability most of all.  Taking the vitamins and drug consistently.  

[NeDaytoDayMJ]

My birthday weekend was fun.  I went to Kansas City and we hung out there.  I wish I could say the same about how I felt.  I never felt truly like myself.  It is so saddening.  
I’m feeling worse now today than I have in a long time. Today I can’t stop crying.  My head has pressure.  My heart feels anxious which leads to more sadness and crying.  I’m having super bad thoughts that I can’t keep living like this.  
I did forget to bring my vitamins on the trip.  (Vitamin C, Iron, Magnesium, Zinc, Fish Oil).  Also, I didn’t eat the healthiest.

I am going to clean up my diet this week and get back on vitamins.  I’ll try some guided meditations also.   I pray today is the worst.  Please God.  

[Altostrata]

4 hours ago, NeDaytoDayMJ said:

My birthday weekend was fun.  I went to Kansas City and we hung out there.  I wish I could say the same about how I felt.  I never felt truly like myself.  It is so saddening.  

 

Don't worry, you'll have more fun next year. Did you have any alcohol or stay up very late?

 

What is your current daily drug schedule and sleep pattern?

[NeDaytoDayMJ]

I take .5 mg lexapro each morning.  I did take one 15 mg meloxicam the past 7 days but not today.  I try and take all the vitamins at noon.

No alcohol, no staying up late.  I drove 3 hrs last night in the dark on way home.  It’s weird how each time I get back from a trip I feel terrible the following day.  

I sleep anywhere from 1130pm-1am until 745am-900am.  I don’t have a regular sleep schedule but it’s not terrible.  

[Altostrata]

Seems you might be having intermittent windows, which is a good sign.

 

Be patient. Do what you can to visualize healing, worrying about disaster only makes withdrawal worse.

 

Many 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/

 

You might try a little bit of one at a time to see how it affects you. Please let us know how you’re doing.

[getofflex]

17 hours ago, NeDaytoDayMJ said:

I drove 3 hrs last night in the dark on way home.  It’s weird how each time I get back from a trip I feel terrible the following day.  

Traveling can be stressful, and stress can definitely cause an uptick in symptoms.  Hopefully, you will feel better by tomorrow, or soon.  

[NeDaytoDayMJ]

I’m trying to be patient and visualize it’s just that the head pressure, and ensuing sadness are very powerful emotions that I succumb to.  I don’t feel like I am getting any better.  My quality of life since October has been miserable.  I am trying to stay positive but it’s very hard to see any light.  
 

I think I am still experiencing withdrawal effects from the July 2.5 CT.  My brain has not stabilized since then.  I’m not sure it’s going to.  I desperately need it to.  

Now I am heading to Wisconsin a 8 hr road trip on Saturday.  I’m dreading this. 

 

I know updosing to 1 mg is an option I don’t know how soon I can.  I am definitely not better after 11 days back on .5 mg