SOcean: having a hard time - need help/advice

[SOcean]

5 hours ago, Altostrata said:

I would go back to the most compatible neurologist you've seen, explain your hypersensitivity and history with benzos, and request diazepam. Specifically state that Ativan seemed to help as it was wearing off, but the initial dosage was too high and made you feel xxxxxxxx (please explain how it made you feel).

 

The neurologist will be familiar with lamotrigine. Relative to the drugs your PCP wants to try, at low doses, lamotrigine is a mild drug. If you want to try it, I would start at a quarter of a 2mg tablet (which is prescribed for children) or 0.25mg in compounded liquid. You could tell the neurologist that since you are so sensitive, you want to start at a low dose and titrate up. You'll have to keep daily notes to track the effect.

 

I would be hesitant to take a flyer on another drug. Restoril has roughly the same risks as a benzo. My guess is mIrtazapine would be too activating and a very bad drug for you -- but we can't know, any of these drugs is a trial-and-error experiment.

 

Please let us know how you're doing.

 

 

The Mayo Clinic neuro won't schedule a follow up for me (I guess she thinks we are done?) She has just been having me message through the portal. I could try with her, but I doubt it. The other one is a movement specialist who won't prescribe psych drugs, he just prescribes the anti-seizure meds for tremors. But I have the Psychiatrist appt next Tuesday. I can ask him. Is Restoril similar to diazepam? I thought it is a benzo too? 

[Shep]

10 hours ago, SOcean said:

Is Restoril similar to diazepam? I thought it is a benzo too? 

 

Yes, you are correct - Restoril is a benzo. 

 

On 11/11/2019 at 9:30 AM, SOcean said:

I feel like I do better on Xanax but I know that Xanax is shorter acting and more addictive.

 

When were you on Xanax? Have you been on other benzos? Please note that one benzo is no more addictive (or the cause of the dependency) than any other. 

 

Did Xanax help with the movement symptoms or any of the other symptoms? 

 

Please update your signature to reflect the dates and doses you took Xanax. A direct link to your signature is here:

 

Account Setting - Create or Update Your Signature

[SOcean]

19 minutes ago, Shep said:

 

Yes, you are correct - Restoril is a benzo. 

 

 

When were you on Xanax? Have you been on other benzos? Please note that one benzo is no more addictive (or the cause of the dependency) than any other. 

 

Did Xanax help with the movement symptoms or any of the other symptoms? 

 

Please update your signature to reflect the dates and doses you took Xanax. A direct link to your signature is here:

 

Account Setting - Create or Update Your Signature

I have the Xanax in my signature from previous years. I was given some in June 2019 right after I had the steroid because I was in such bad shape. I don't believe it helped with the movement stuff. I will update signature. 

[Shep]

1 minute ago, SOcean said:

I have the Xanax in my signature from previous years. I was given some in June 2019 right after I had the steroid because I was in such bad shape. I don't believe it helped with the movement stuff. I will update signature. 

 

I'm sorry, I see you do have it listed as alprazalom in your signature. 

 

 

[Shep]

Linking some resources for finding another doctor, since you're not getting much help from where you're currently going. Check out these resources. Even if it's a therapist that's in your area and not a prescribing doctor, you may want to reach out to them to see if they know of any local doctors that may be versed in withdrawal. 

 

Mad in America - Provider Directory

 

Recommended doctors, therapists, and clinics

[SOcean]

I'm feeling really terrified today. I'm worried that I have permanent brain damage from these drugs. I feel that the damage started over the years on Prozac (movement disorder, muscle spasms, twitches, fibromyalgia symptoms) and then the steroid completely overstimulated my brain. It has been 4 months since the steroid and I'm am not any better at all. I can't handle stimulation at all. It makes me shake and tremble inside. I can't handle noise, makes me shake and tremble too. I have the movement problems and tremors and the eye issues. I feel like no doctors are helping me. I saw that another member on here had similar issues and never recovered. I am terrified. I'm only 39, I have a young son. I'm so scared. 

[SOcean]

I know I'm in withdrawal from fluoxetine too but I had the overstimulation problems and movement problems before I stopped the prozac, which I why I stopped the prozac. I feel that both of these drugs put together did damage to my brain. I know right after the steroid, my period came (and hasn't been regular since) and I've felt horrible inside and out since. I immediately had trouble walking and moving, I had over-active reflexes (which have returned to normal) but I still have fast jerky movements. Worried about serotonin poisoning and brain damage. No one seems to be able to help me and that is terrifying to me. 

[Shep]

Check out the links in my last post and see if you can find a better doctor, SOcean. Let us know what you find out. 

 

Finding one person on the internet with a similar history who hasn't healed (yet) and fixating on it is counter-productive. I've seen so many come out healed from this that it's hard to think a young person like yourself won't also heal. 

[SOcean]

17 minutes ago, Shep said:

Check out the links in my last post and see if you can find a better doctor, SOcean. Let us know what you find out. 

 

Finding one person on the internet with a similar history who hasn't healed (yet) and fixating on it is counter-productive. I've seen so many come out healed from this that it's hard to think a young person like yourself won't also heal. 

I believe that person on here passed away. 😞 I know I shouldn't fixate, but these symptoms I have are just terrifying. And I am so scared. Especially about my eyes. I have tried to be strong for so long feeling like things would get better.  At least a little. And they have not, at all, since June. I am just so scared because I have been to so many doctors and no one is helping me. They just keep passing me around, mostly to neurology, and then neurology ignores most of the issues. I will look at your list. I appreciate it. 

[Henryk12]

On 11/13/2019 at 1:39 PM, Shep said:

Check out the links in my last post and see if you can find a better doctor, SOcean. Let us know what you find out. 

 

Finding one person on the internet with a similar history who hasn't healed (yet) and fixating on it is counter-productive. I've seen so many come out healed from this that it's hard to think a young person like yourself won't also heal. 

I have every symptoms relating to hers and I have Pot also . Was prescribed nitrazepam for sleep ,Anorol , Amitipytiline, artane  POTS as no cure 

[SOcean]

I have mentioned my eyes on here a few times. I'm having a crisis with them now. I can barely type this. Went to Neuro Optometrist yesterday and she did tests on me. Says that my eyes are not working properly with my brain. 3 things: Divergence Insufficiency 

Ocular Pursuit Disorder 

Saccadic Eye Movement Disorder 

 

She says my eyes are behaving like I've had a concussion. Has anyone had this from AD's or withdrawal? So scared. They just keep getting worse. I cannot drive really now and have no idea how my son is getting to school. I fell and went to ER yesterday and they referred me to Neuro Ophthalmologist, who can't get me in! I've been calling around all over. No one can see me. This is a nightmare. Feel like coming off the prozac too fast contributed to this. Psych is Tuesday. Terrified about my vision and lack of help. 

[SOcean]

Should I reinstate? I'd rather have tremor than be blind! 

[SOcean]

It looks like I got into Neuro Opthalmologist at Mayo on Monday! They will do detailed testing on my eyes. Takes 3-4 hours. Hope to get answers. 

[Shep]

You may want to wait to reinstate until you get the results from the neuro-ophthalmologist. While eye problems are very common during withdrawal, it's good to get these things checked out to rule out everything in case it's not withdrawal, especially when it comes to your eyes. 

 

Please let us know what you find out. 

[SOcean]

On 11/15/2019 at 7:21 AM, Shep said:

You may want to wait to reinstate until you get the results from the neuro-ophthalmologist. While eye problems are very common during withdrawal, it's good to get these things checked out to rule out everything in case it's not withdrawal, especially when it comes to your eyes. 

 

Please let us know what you find out. 

Shep, any ideas about muscle relaxers that would be safe for me, in case they prescribe? I am having such bad eye cramps, I'm thinking they might. I want to be prepared so I don't take anything that will make things worse. This whole thing with my eyes is so terrifying. 

[Shep]

15 hours ago, SOcean said:

Shep, any ideas about muscle relaxers that would be safe for me, in case they prescribe?

 

You can google the drug to find out what the side effects are. Since you're currently not taking any drugs, you won't have to worry about adverse reactions, but some muscle relaxers can cause blurry vision. 

 

You also may be hyper-sensitive to medications now, so if you do try anything, go with the lowest dose possible in case there is a reaction. 

 

Do you suffer from dry eyes? That can sometimes cause pain and cramping. You may ask about artificial tears (there are forms of these that are preservative free) and / or use warm compresses over the eyelids to help. You may want to talk to the doctor about holistic treatments to try before taking a drug for it. 

 

Let us know what you find out. 

[SOcean]

1 hour ago, Shep said:

Do you suffer from dry eyes? That can sometimes cause pain and cramping. You may ask about artificial tears (there are forms of these that are preservative free) and / or use warm compresses over the eyelids to help. You may want to talk to the doctor about holistic treatments to try before taking a drug for it. 

 

Let us know what you find out. 

Not dry eyes. Way beyond that. Had eyes tested. Said they are behaving like I had concussion. Can't see straight. Can't walk straight.  Double vision. Eyes aren't moving right. So scared. Wanted to ask about muscle relaxers because some act on serotonin and I am in withdrawal 

[Shep]

SOcean, what did you find out at your eye appointment yesterday? 

[SOcean]

10 hours ago, Shep said:

SOcean, what did you find out at your eye appointment yesterday? 

Hello. Unfortunately the neuro Ophthalmologist was completely pointless. She pretty much gave me a regular eye exam and said I was fine. The neuro Optometrist is trying to help me at this point with vision therapy. Unfortunately it is increasing the symptoms because it strains things. Was in ER last night for tension headache and they found slight Nystagmus in my eye (movement disorder). Went to another psych today and that didn't work out well. Said he wanted to prescribe something for sleep and to just take it and not look at side effects. I looked it up and it was Seroquel anti-psychotic which there is no way I am taking, so I guess that was a complete waste of time. Am so disappointed because he was supposed to be a Psych with neuro experience, and anti-psychotics are known to cause tremors, so I am just at a loss. 

[SOcean]

Also, had to go to ER last night for horrible headache and muscle spasm in eyes. They gave me diazepam. I took 2mg. Unfortunately it didn't make a huge difference with spasm. 

[Shep]

I'm not minimizing the severity of your symptoms by suggesting that a small amount of magnesium or fish oil may fix the eye symptoms, but it may help with your overall nervous system and bring you some relief. We don't recommend a lot of supplements, as many members report their nervous systems are simply too fragile to handle them. However, magnesium and fish oil tend to be calming to the nervous system and many people report they do help. Please only add in one supplement at a time and at a small dose. For more, please see:

 

 King of supplements: Omega-3 fatty acids (fish oil)

 

Magnesium, nature's calcium channel blocker

[SOcean]

14 minutes ago, Shep said:

I'm not minimizing the severity of your symptoms by suggesting that a small amount of magnesium or fish oil may fix the eye symptoms, but it may help with your overall nervous system and bring you some relief. We don't recommend a lot of supplements, as many members report their nervous systems are simply too fragile to handle them. However, magnesium and fish oil tend to be calming to the nervous system and many people report they do help. Please only add in one supplement at a time and at a small dose. For more, please see:

 

 King of supplements: Omega-3 fatty acids (fish oil)

 

Magnesium, nature's calcium channel blocker

I have tried magnesium but I will check the form and up the dose. I'm vegan but I'm willing to try the fish oil in this case. I'm so scared about my eyes and my brain. I feel like I have neuro toxicity and no one is helping me. I asked the Psych and he was completely oblivious about it. I asked about withdrawal making my eyes worse. Oblivious about that too. 

[Shep]

Also make sure you're not spending a lot of time on the computer. Many of us going through withdrawal spend hours a day researching symptoms on the computer (I did this when I first discovered the web forums) and too much screen time can definitely make eye issues worse. 

 

Glasses for light sensitivity may make you more comfortable. Please see:

 

Light-sensitive? Try blocking out blue light

 

12 hours ago, SOcean said:

Was in ER last night for tension headache and they found slight Nystagmus in my eye (movement disorder).

 

We've had a number of members reporting nystagmus during or after coming off psych drugs. I did a search for this condition here:

 

Search - nystagmus

 

Wellness used to be a moderator here and she had this same symptom but has recovered:

 

On 4/28/2016 at 12:25 PM, Wellness said:

I can focus my eyes and I no longer shake and have nystagmus but I still have sensitivity to lights.

 

 

So it's possible that these eye symptoms are withdrawal symptoms and will clear up over time. It's good you had a thorough eye exam with a neuro-ophthalmologist and refused the Seroquel from the psychiatrist. Many of the symptoms from withdrawal mimic a traumatic brain injury, so it's not surprising that such eye conditions result, among the dozens of other symptoms that people are reporting en masse all over these forums. The damage can be very brutal and severe.

 

If this does turn out to be withdrawal, doing as much self care as possible is best. If warm compresses can help with the headaches or other holistic / natural treatments, you may want to research those here and on holistic health sites. This will get you started:

 

Non-drug techniques for dealing with body pain

 

The author of the above link is also author of the Beyond Meds site. She survived a large cocktail of psych drugs and her site is a wealth of information, including this page:

 

OM — healing, soothing, transformative sounds (for me can also end migraines)

 

[SOcean]

On 11/20/2019 at 4:17 AM, Shep said:

Also make sure you're not spending a lot of time on the computer. Many of us going through withdrawal spend hours a day researching symptoms on the computer (I did this when I first discovered the web forums) and too much screen time can definitely make eye issues worse. 

 

Glasses for light sensitivity may make you more comfortable. Please see:

 

Light-sensitive? Try blocking out blue light

 

 

We've had a number of members reporting nystagmus during or after coming off psych drugs. I did a search for this condition here:

 

Search - nystagmus

 

Wellness used to be a moderator here and she had this same symptom but has recovered:

 

 

 

So it's possible that these eye symptoms are withdrawal symptoms and will clear up over time. It's good you had a thorough eye exam with a neuro-ophthalmologist and refused the Seroquel from the psychiatrist. Many of the symptoms from withdrawal mimic a traumatic brain injury, so it's not surprising that such eye conditions result, among the dozens of other symptoms that people are reporting en masse all over these forums. The damage can be very brutal and severe.

 

If this does turn out to be withdrawal, doing as much self care as possible is best. If warm compresses can help with the headaches or other holistic / natural treatments, you may want to research those here and on holistic health sites. This will get you started:

 

Non-drug techniques for dealing with body pain

 

The author of the above link is also author of the Beyond Meds site. She survived a large cocktail of psych drugs and her site is a wealth of information, including this page:

 

OM — healing, soothing, transformative sounds (for me can also end migraines)

 

Thank you for the info. Went to a regular PCP today. She did prescribe flexeril for the muscle spasms and I am considering taking it because they are so horrible at this point and I don't know what to do, and my husband thinks I am losing my mind because I am so sick but refuse to take the prescriptions. I hope it doesn't interfere with my withdrawal too much or make things worse. I do not understand why none of these doctors understand about withdrawal and also the side effects from these drugs. She also prescribed Zofran for nausea, and Wellbutrin for anxiety, which I won't be taking I'm sure. I don't think it is an anti-anxiety drug is it? 

 

I feel like I am getting sicker and sicker and I don't know what to do. I feel like if I don't reinstate the prozac, I will keep feeling cross eyed like this and will become completely disabled (I'm almost there as of now). I can't drive. I can't do much at all. What do I do? I did not see a provider in Arizona in the list you showed me who can help with withdrawal. 

[SOcean]

I feel like a might need to reinstate a tiny amount of prozac. I came off 40mg after 12 years in a 1 month period and now I can't see straight and it is just getting worse every day. I am not able to function. At all. I know it caused neuro issues with me but they are worse now that I'm off. This is pure hell. I have another psych appt on Tues. They are going to want to put me on something. Should I reinstate or do something else? 

[SOcean]

On 11/20/2019 at 4:17 AM, Shep said:

Also make sure you're not spending a lot of time on the computer. Many of us going through withdrawal spend hours a day researching symptoms on the computer (I did this when I first discovered the web forums) and too much screen time can definitely make eye issues worse. 

 

Glasses for light sensitivity may make you more comfortable. Please see:

 

Light-sensitive? Try blocking out blue light

 

 

We've had a number of members reporting nystagmus during or after coming off psych drugs. I did a search for this condition here:

 

Search - nystagmus

 

Wellness used to be a moderator here and she had this same symptom but has recovered:

 

 

 

So it's possible that these eye symptoms are withdrawal symptoms and will clear up over time. It's good you had a thorough eye exam with a neuro-ophthalmologist and refused the Seroquel from the psychiatrist. Many of the symptoms from withdrawal mimic a traumatic brain injury, so it's not surprising that such eye conditions result, among the dozens of other symptoms that people are reporting en masse all over these forums. The damage can be very brutal and severe.

 

If this does turn out to be withdrawal, doing as much self care as possible is best. If warm compresses can help with the headaches or other holistic / natural treatments, you may want to research those here and on holistic health sites. This will get you started:

 

Non-drug techniques for dealing with body pain

 

The author of the above link is also author of the Beyond Meds site. She survived a large cocktail of psych drugs and her site is a wealth of information, including this page:

 

OM — healing, soothing, transformative sounds (for me can also end migraines)

 

Hi again. Shep, please see my last post regarding reinstate. I could really use advice on this before Tues. I don't want to reinstate because prozac is so stimulating and I am already over stimulated from that and steroid withdrawal too probably, or whatever that did to my CNS.  And I really don't want any SSRI because they can make tremor worse. But I can't live like this, looking out through eyes that can't see straight and like I've been hit on the head. I have blepharospasm in my eyelids now too. I have dysautonomia. I wake up at 4:30 every morning in a horrible state. My husband wants me to take the benzos and muscle relaxers I have  because he thinks I'm losing my mind not taking anything for these symptoms and he has had it with me (he understands my point but feels I can't just go on like this) Psych appt Tues. They are going to want to put me on something. What do I do? Thank you so much. For everything. Means so much. 

[Altostrata]

On 11/12/2019 at 11:31 AM, Altostrata said:

I would go back to the most compatible neurologist you've seen, explain your hypersensitivity and history with benzos, and request diazepam. Specifically state that Ativan seemed to help as it was wearing off, but the initial dosage was too high and made you feel xxxxxxxx (please explain how it made you feel).

 

The neurologist will be familiar with lamotrigine. Relative to the drugs your PCP wants to try, at low doses, lamotrigine is a mild drug. If you want to try it, I would start at a quarter of a 2mg tablet (which is prescribed for children) or 0.25mg in compounded liquid. You could tell the neurologist that since you are so sensitive, you want to start at a low dose and titrate up. You'll have to keep daily notes to track the effect.

 

I would be hesitant to take a flyer on another drug. Restoril has roughly the same risks as a benzo. My guess is mIrtazapine would be too activating and a very bad drug for you -- but we can't know, any of these drugs is a trial-and-error experiment.

 

Please let us know how you're doing.

 

SO, we're just peer counselors. We don't treat neurological issues. We avoid recommending drugs for people to take, we don't know what will work. The above is my best guess.

 

Have you discussed diazepam or lamotrigine with any of your doctors? I'm surprised a neurologist would not prescribe lamotrigine. It seems your doctors are willing to prescribe just about anything other than diazepam or lamotrigine. Nobody knows what will work.

 

Diazepam is something of a muscle relaxant as well as an anti-seizure drug. Lamotrigine can calm hyper-activation.

 

On 11/19/2019 at 3:00 PM, SOcean said:

Also, had to go to ER last night for horrible headache and muscle spasm in eyes. They gave me diazepam. I took 2mg. Unfortunately it didn't make a huge difference with spasm. 

 

After you took the 2mg diazepam, was there any period in the next few days you felt better?

 

It seems to me a couple of your doctors have diagnosed your eye problem as trembling in the muscles. This fits with the other symptoms you've reported -- trembling, shaking, spasms. These are autonomic symptoms, they do not mean you have brain damage or any permanent neurological damage. In fact, a couple of neurologists have told you your tests are normal.

 

Whatever is prescribed, I would try only one drug at a time, and at a greatly reduced dosage so you can see what it does.

 

[SOcean]

25 minutes ago, Altostrata said:

 

SO, we're just peer counselors. We don't treat neurological issues. We avoid recommending drugs for people to take, we don't know what will work. The above is my best guess.

 

Have you discussed diazepam or lamotrigine with any of your doctors? I'm surprised a neurologist would not prescribe lamotrigine. It seems your doctors are willing to prescribe just about anything other than diazepam or lamotrigine. Nobody knows what will work.

 

Diazepam is something of a muscle relaxant as well as an anti-seizure drug. Lamotrigine can calm hyper-activation.

 

 

After you took the 2mg diazepam, was there any period in the next few days you felt better?

 

It seems to me a couple of your doctors have diagnosed your eye problem as trembling in the muscles. This fits with the other symptoms you've reported -- trembling, shaking, spasms. These are autonomic symptoms, they do not mean you have brain damage or any permanent neurological damage. In fact, a couple of neurologists have told you your tests are normal.

 

Whatever is prescribed, I would try only one drug at a time, and at a greatly reduced dosage so you can see what it does.

 

I currently don't have a competent neurologist. One won't prescribe anything. The other only will prescribe topomax. Convinced it is migraine.

 

I can ask the Psychiatrist about lamotrigine. Diazepam honestly did not do much and it was very short lived. Maybe I need to take higher dose.

 

The one Optometrist that did eye movement tests said I have saccadic eye movement disorder which is abnormal eye muscle movement with tracking and reading, which is different from trembling, which I also have. Saccadic eye movement problems are seen in concussions and brain issues.   

[Altostrata]

32 minutes ago, SOcean said:

Diazepam honestly did not do much and it was very short lived.

 

What exactly did diazepam do? After you took the 2mg diazepam, was there any period in the next few days you felt better?

 

Please re-read the information I gave you about lamotrigine.

[SOcean]

13 hours ago, Altostrata said:

 

What exactly did diazepam do? After you took the 2mg diazepam, was there any period in the next few days you felt better?

 

Please re-read the information I gave you about lamotrigine.

2mg Diazepam had a slightly calming effect for a couple hours. I did not feel any better after a couple hours. 

[Altostrata]

12 hours ago, SOcean said:

2mg Diazepam had a slightly calming effect for a couple hours. I did not feel any better after a couple hours. 

 

This sounds to me like you need a higher dose. Which doctor are you going to see next? I would tell that doctor about your experience with 2mg diazepam. Could be that 4mg (2mg twice a day) would work for you.

 

I have a lot of reservations about suggesting diazepam, but it might help you. You'd have to take it regularly; when your symptoms calm down, you'd very carefully taper off using a liquid. If you take gabapentin or Restoril, it would be the same, assuming any one of these drugs help.

[SOcean]

On 11/22/2019 at 8:24 PM, Altostrata said:

 

This sounds to me like you need a higher dose. Which doctor are you going to see next? I would tell that doctor about your experience with 2mg diazepam. Could be that 4mg (2mg twice a day) would work for you.

 

I have a lot of reservations about suggesting diazepam, but it might help you. You'd have to take it regularly; when your symptoms calm down, you'd very carefully taper off using a liquid. If you take gabapentin or Restoril, it would be the same, assuming any one of these drugs help.

Thank you for the advice. I am extremely concerned about my eyes right now. They keep getting worse and worse and I feel it is because of the withdrawal. I am terrified. I feel like I should reinstate or add something with serotonin. What about 5htp? I used to use benadryl while I was on prozac and I did not know it increased serotonin. I feel like my brain may not know how to function now and I am losing my binocular vision. Otherwise it is brain damage from prednisone and prozac. Can barely see straight to type this. Optometrist asked if I had concussion. Have not had concussion. Vision gets worse daily. Would take benadryl but it seems to make nerves worse. But I will take that over not being able to see straight. Also, I have some prozac here. Or I can get 5htp. I did take about 2mg Flexiril for 2 days and felt slightly better and vision was a little better. I am wondering if it is because it boosts serotonin. Did not take it yesterday and my vision is horrible this morning and I am freaking out. I will take tremors from prozac over losing my vision. What should I do? Also, have an appt with new Psych on Tuesday but my main concern is to fix my vision so I don't want to try something new that may not work. 

[Altostrata]

1 hour ago, SOcean said:

I did take about 2mg Flexiril for 2 days and felt slightly better and vision was a little better.

 

When did you do this? Why did you stop?

 

As we've discussed, both Flexaril and diazepam are muscle relaxants. Flexaril has a much shorter half-life of around 18 hours. If you take either drug regularly, you will become physiologically dependent on it and you will have to taper it. Because Flexaril is short-acting, you'll probably eventually have to take it twice a day to avoid interdose withdrawal. When you take it twice a day, you'll probably have to divide your 2mg dose, taking 1mg 12 hours apart.

 

Please disregard any theories based on serotonin, they're nonsense. Most likely, your vision is affected by abnormal muscle tension in and around your eyes, as a couple of practitioners have suggested. This was due to an adverse reaction, possibly serotonin toxicity, from excessive Prozac doage.

 

Recovery from drug adverse effects is slow, there's no reason to think you have permanent brain damage.

[SOcean]

I was given flexeril to try to stop the horrible muscle spasms and cramping that won't stop in my face and behind my eyes. I have only taken it 3 times. I broke the 5mg pill into a quarter. So you do not think my vision is worsening from withdrawal? Because it just keeps getting worse. And spasms just keep getting worse. 

 

Saccadic eye movement disorder isn't from muscle tension. It is usually from concussion or nervous system/brain problems. Brain isn't telling muscles what to do.  I felt my vision changed after the bad prednisone reaction and just keeps getting worse. That is why I keep thinking neuro toxicity. I do not know what to do. I can't drive. I can barely see straight. I have to do something here. No one seems to know what to do with me. If I go to ER they aren't going to know. I have such horrible spasms in my left eye it feels like it is being pulled sideways. I had some of this before I stopped Prozac and I figured it was from the Prozac. Do you think Lamotrigine would help calm some of this? I have internal shaking all over, especially face and some blepharospasm in eyelids. 

[SOcean]

I am still struggling. I went to another neurologist yesterday to try and talk about the drugs that I believe are causing these issues. He was oblivious and sent me for unrelated blood tests that are probably pointless. When I try to go anywhere my body tingles all over and I get a horrible heavy feeling like I'm going to fall.

 

My vision is horrible. Everything is warped. My depth perception if off. I have temperature regulation problems. I shake constantly with tremors. I have constant muscle spasms behind my eyes. Even when closed. I feel like my eyes are being pulled in different directions. When I close my eyes, my eye lids feel stuck and I can feel them cramping. I have blepharospasm in certain positions. I can feel mild facial cramping in my cheeks and under my eyes.

 

My eye sight is the scariest part of this for sure. If I could get that under control, I would feel better. I currently can't drive. Husband is driving me to appts and missing work. My 11 year old son is really suffering because of this. I get no answers at these appts. I feel like I have damage from the years of prozac, xanax, and then the prednisone sent me over the edge. Prednisone causes glutamate release. Maybe my receptors were messed up from prozac and xanax and didn't metabolize it properly and now I have damage. After the steroid colors looked too bright for months.

 

Bright colors would make my eye muscles shake. It has improved but my vision is still awful, even worse I think. I did notice some vision issues starting before steroid. Maybe from prozac and xanax. I didn't use xanax constantly but there were periods where I took it daily and probably didn't taper off properly. I did have some withdrawal in 2014 or 2015, I think. Could that have been the start of my eye problems?

 

I really do not know what to do at this point. I have been to so many doctors with blank stares and no answers. Today I have an appt with new Psych. They will probably want to put me on something else or back on prozac. My husband wants me to get back on something. I think he doubts my symptoms sometimes or thinks they will be fixed by AD.

 

I feel so damaged at this point. I have tried so many things to fix this and at this point am at a loss. I feel so overstimulated all the time. I have a hard time thinking straight. Nothing really brings me joy. I am irritable. I have spent 5 months pretty much bedridden and in misery. I can't even walk to mail box without dizziness, cramping and falling. Can't walk around house. Can barely take shower. I keep getting weaker because I can't do much at all with my balance and eye issues .

 

I can't believe it is almost Xmas and I am still almost the same as when this started in June, except with worse balance and vision. We usually go to CA for Xmas to be with family. No way we can go this year. I have another eye appt at a different place, and I am going to ENT to look at vestibular system. I'm sure they will find abnormalities. Maybe eye place can prescribe glasses to get me through. Maybe there's vestibular therapy. I feel whatever has happened to me has then off my whole nervous and vestibular system. I feel like I'm dying though. If things get worse, not sure how I can keep functioning. Although I'm barely functioning now. 

 

I am vegan but am considering fish oil. Although I think fish is high in glutamate. So would that be a bad idea? 

Edited November 26, 2019 by Altostrata
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[Altostrata]

Please stop overthinking what neurotransmitter might be involved or puzzling about brain damage. This probably is not a useful model for your condition. It's causing you to spin in anxious circles. Nobody, not even the best neurologist, would be able to tell you what happened from adverse drug reactions. Everyone would be guessing what drug would treat it.

 

I'm not a doctor, but from my experience with drug adverse reactions, your situation is not unusual. Whatever drugs you took, whatever drug reactions you had, your nervous system is upset. It's having trouble coordinating your eyes and muscles. It's sending spurts of signals instead of gentle, steady signals. If you calm it down even a little, it will very gradually repair itself. It wants to function normally.

 

If you have been sensitive to light all along, you might wear tinted glasses even indoors. You will want to reduce any kind of light stimulation. This will help your nervous system settle down. Natural light is very bright where you live, isn't it?

 

As I said before, diazepam and lamotrigine are anti-seizure drugs that might help your nervous system slow down. Flexeril is a muscle relaxant.

 

If you found Flexeril works, why don't you continue it? Like every other drug that might reduce your symptoms, if you take Flexeril regularly, you will become physiologically dependent on it. You will have to gradually taper it to go off.

 

On 11/24/2019 at 8:37 AM, SOcean said:

I did take about 2mg Flexiril for 2 days and felt slightly better and vision was a little better.

 

On 11/24/2019 at 10:40 AM, SOcean said:

I broke the 5mg pill into a quarter.

 

Did you take 1/4 of a 5mg tablet a few times? That would be 1.25mg per dose. Flexeril is a muscle relaxant and may be sedating. If it works for you at a minimal dose, why don't you continue to take it? You probably will want to take 1.25mg at least twice a day, 12 hours apart. Don't overuse it.

 

If it works, I would expect you'd take Flexeril regularly for several months or more. Your nervous system needs time to settle down.

 

Please let us know how you're doing.

 

PS Fish oil might be helpful, try only a low dose at a time to see what it does. As a vegan, you need vitamin B12 supplementation, have you been taking it?