SOcean: having a hard time - need help/advice

[Shep]

18 hours ago, Altostrata said:

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?

 

@SOcean I'm going to add some information inline with what Alto is posting. If you are hyper-sensitive to supplements now, you may need to switch your diet. I don't say that lightly because I was a vegetarian for 32 years prior to withdrawal and becoming too sick to take supplements. So I left vegetarianism. I'm not saying you should or shouldn't change your diet, but you may want to do some research on this if you haven't already. 

 

We have a thread where we've explored this here:

 

A vegetarian diet during withdrawal

 

For information on vitamin B12, please see:

 

Vitamin B12: essential for mood, nervous system 

 

If you need to start B12, please note it can be stimulating to people with a destabilized nervous system. So you'll want to start with a very small dose or get your vitamin B12 through your diet. 

 

For information on fish oil, please see:

 

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

 

You'll also want to start with a low dose to see if you're sensitive. You can always increase the dose. 

[SOcean]

 On the flexiril, I believe I took 1.25mg dose. I was prescribed it as short term. I'm not sure they will refill. I have to be careful with muscle relaxers because I have EDS too. I really don't know what to take. I wish I could get through this on supplements instead. I am not trying to catastrophize my symptoms but I am pretty much completely disabled at this point. Cannot drive, etc. This is with a young son too. He is pretty much left with an invalid mother at this point. So yeah I have a lot of anxiety going right now. 

 

Regarding my eyes, I am not exaggerating about them... It goes way beyond blurry vision and light sensitivity. Yesterday I may have gotten some answers. I went to an optometrist who is also a vestibular specialist. We did a lot of tests. She found that my eyes are misaligned and aren't working together right. It probably started before this. I had eye muscle pain for years. And the illness can bring it out, she says, because your eyes can't recorrect anymore. I think the prednisone reaction messed up my whole vestibular system. Drugs and falls can contribute to misalignment as well. Anyway, I have glasses being made so they may help. But I have to get through two more weeks feeling like my eyes are crossed, as well as my other symptoms. Also she thinks my inner ears are messed up too. Again, something I've had, made worse by all this. So I am dealing with a lot on top of withdrawal. I can't walk straight or see straight anymore. Or read or watch tv, or be on here for more than a few min. So it has been extremely rough.  I've spent almost 6 months on a couch or in bed. I am so dizzy now when i move that I can barely eat. I've been to the ER 3 times for falls. Started vomiting a few days ago from balance issues. I am praying that the glasses at least take care of some of the eye problem so I can see straight and then I'll go to an ENT for ear tests. I am still dealing with some dystonia, blepharospasm in my eye lids, and tremor and at this point I don't know what will stay or improve or progress. It sucks. I am angry. I feel this is from 12 years of the prozac. My dad has some tremor so I may be predisposed to these issues and drugs made it worse. Have a lot of people had the movement issues go away after withdrawal or do they persist? While I was on it I had no idea that SSRI'S could cause or exacerbate movement disorders. Apparently benzos can too. I am wondering what I will be left with after I get through this. 

 

Regarding the fish oil, I am definitely willing to try it but I'm guessing I may not tolerate it because I think it is high in glutamate? Which is stimulating. I can try though. I take a multivitamin with B. I have tried to take just B vitamins but they are activating as you said. I had my B checked a few months ago and it was ok. But I need to be better at taking it. Has anyone tried taurine or NAC? 

[SOcean]

Also wanted to mention that my period stopped about a month ago. Has never happened to me before. After steroid reaction it became irregular and then completely stopped. Not sure if withdrawal is contributing? 

[SOcean]

On 11/27/2019 at 6:10 AM, Shep said:

 

@SOcean I'm going to add some information inline with what Alto is posting. If you are hyper-sensitive to supplements now, you may need to switch your diet. I don't say that lightly because I was a vegetarian for 32 years prior to withdrawal and becoming too sick to take supplements. So I left vegetarianism. I'm not saying you should or shouldn't change your diet, but you may want to do some research on this if you haven't already. 

 

We have a thread where we've explored this here:

 

A vegetarian diet during withdrawal

 

For information on vitamin B12, please see:

 

Vitamin B12: essential for mood, nervous system 

 

If you need to start B12, please note it can be stimulating to people with a destabilized nervous system. So you'll want to start with a very small dose or get your vitamin B12 through your diet. 

 

For information on fish oil, please see:

 

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

 

You'll also want to start with a low dose to see if you're sensitive. You can always increase the dose. 

Thank you for info. I talked to my husband and we are considering adding fish back to our diet if it helps me. I am just concerned about the glutamate. My theory was that I reacted to steroid the way I did because it releases excess glutamate, which is an excito-toxin. I think I may have faulty glutamate-gaba system. I saw that someone on here did drug sensitivity testing that also showed glutamate sensitivity, so I'm going to look into that. Anyone else have experience with this? 

[Altostrata]

Please stop puzzling out what glutamate may or may not have done or what it might do. It's one of the most abundant substances in our bodies and foods. The glutamate content of fish oil is not important. If it helps, it helps. If it doesn't, it doesn't.

It is possible taking the steroid disrupted your menstrual cycle.

 

16 hours ago, SOcean said:

On the flexiril, I believe I took 1.25mg dose. I was prescribed it as short term. I'm not sure they will refill. I have to be careful with muscle relaxers because I have EDS too.

 

It's possible some of your symptoms are due to EDS. We don't know anything about treating endocrinological , ophthalmic, or EDS problems here. I've given you my best guesses about what will work. I can't add anything further.

[SOcean]

Just now, Altostrata said:

Please stop puzzling out what glutamate may or may not have done or what it might do. It's one of the most abundant substances in our bodies and foods. The glutamate content of fish oil is not important. If it helps, it helps. If it doesn't, it doesn't.

It is possible taking the steroid disrupted your menstrual cycle.

 

 

It's possible some of your symptoms are due to EDS. We don't know anything about treating endocrinological , ophthalmic, or EDS problems here. I've given you my best guesses about what will work. I can't add anything further.

I was just reading the post that you posted regarding benzo withdrawal and eye symptoms, vestibular symptoms and the author's explanation of brain injury and gaba/glutamate. So I think it is an issue and I think it is important. I don't think I should take benzos if my system is messed up from glutamate from the steroid. I'm being cautious about consuming glutamate. Also I believe my eye symptoms are from the drugs, not EDS. EDS is muscle pain and arthritis. This all started with the drugs. It blew up after steroid reaction. The eye problems I have are what people have with concussion or brain injury. Not regular opthomologist stuff. I have not had concussion. 

[Altostrata]

Do whatever you think is best. I don't believe we can help you here, we don't treat endocrinological, ophthalmic, or EDS problems, or prescribe or counsel about new drugs to treat symptoms of various diseases.

[SOcean]

41 minutes ago, Altostrata said:

Do whatever you think is best. I don't believe we can help you here, we don't treat endocrinological, ophthalmic, or EDS problems, or prescribe or counsel about new drugs to treat symptoms of various 

I really think you are misunderstanding me and I hope you will not stop trying to help me. This site has been more help than any of the doctors so far. This is drug related nervous system problem/withdrawal. In my signature you can see what happened to me. Really distressing to me that it seems like you don't want to help me anymore. I mentioned my period but it doesn't mean this is endocrinology issue and I mentioned possible connective tissue issues but that doesn't mean I am not having drug reaction issues and withdrawal! I was on prozac for 12 years with many bad side effects and then tapered off in a only a month. I had a shock to my nervous system and horrible reaction with the steroid. I have been ill ever since. I need help with healing these issues. I will try what you suggest. Please don't  turn your back on me like many of the doctors are doing.

[Altostrata]

It's possible you are suffering from adverse drug reactions, but I don't have any silver bullets for the symptoms that most distress you. Since you had a serious adverse reaction to fluoxetine, reinstatement does not seem like a good idea. I have no idea what a very low dose of another SSRI, such as citalopram, might do. I have no idea what gabapentin might do. We discussed diazepam. So at this point, anybody's guess is as good as mine.

 

(How is your sleep, by the way? How has your sleep pattern changed since you've been off fluoxetine?)

 

Your other health issues, particularly EDS, are a complicating factor. Your eye problems might be due to any number of things not related to withdrawal syndrome.

 

I made my best guess about drugs -- and we recommend any drugs with a lot of reservations -- but you believe they're all contra-indicated. (Please abandon all your theories about neurotransmitters, including glutamate, unless you know they're specifically involved in EDS.)

 

Otherwise, if you want to avoid drugs altogether, you'll have to support your healing with non-drug methods. See topics in our Symptoms and Self-Care forum.

 

Healing from adverse drug reactions is very slow and gradual, over many months, not weeks or days. As a vegan, you probably need to supplement B12, it's important for neurological health. If you're low on B12, that could be quite serious. As Shep said, you'll want to start with a tiny crumb of a sublingual methylcobalamin tablet daily and gradually work up to a whole tablet.

 

Maybe you lack protein as well. There are Web sites for vegans to discuss any dietary deficiencies they might have, please look at those for answers.

[SOcean]

1 hour ago, Altostrata said:

It's possible you are suffering from adverse drug reactions, but I don't have any silver bullets for the symptoms that most distress you. Since you had a serious adverse reaction to fluoxetine, reinstatement does not seem like a good idea. I have no idea what a very low dose of another SSRI, such as citalopram, might do. I have no idea what gabapentin might do. We discussed diazepam. So at this point, anybody's guess is as good as mine.

 

(How is your sleep, by the way? How has your sleep pattern changed since you've been off fluoxetine?)

 

Your other health issues, particularly EDS, are a complicating factor. Your eye problems might be due to any number of things not related to withdrawal syndrome.

 

I made my best guess about drugs -- and we recommend any drugs with a lot of reservations -- but you believe they're all contra-indicated. (Please abandon all your theories about neurotransmitters, including glutamate, unless you know they're specifically involved in EDS.)

 

Otherwise, if you want to avoid drugs altogether, you'll have to support your healing with non-drug methods. See topics in our Symptoms and Self-Care forum.

 

Healing from adverse drug reactions is very slow and gradual, over many months, not weeks or days. As a vegan, you probably need to supplement B12, it's important for neurological health. If you're low on B12, that could be quite serious. As Shep said, you'll want to start with a tiny crumb of a sublingual methylcobalamin tablet daily and gradually work up to a whole tablet.

 

Maybe you lack protein as well. There are Web sites for vegans to discuss any dietary deficiencies they might have, please look at those for answers.

Hello. Sleep has been horrible since June, which is when I was still on fluoxetine and had the steroid reaction. I did not sleep for 3 days, and since then only in short amounts with lots of waking up. I feel like it has been up and down, sometimes improving a little.  Like last night I did a little better, but most nights I only get 4-6 hours. Since stopping the fluoxetine I wake up at 4am every morning with that weird surge feeling and cannot go back to sleep. I usually fall asleep around 8pm on the couch, wake up every few hours. Fall asleep for short periods of time, wake up at 4, and then I'm up. I do feel the akathisia has improved though. 

 

I agree about the eyes. I only brought it up to see if AD withdrawal could be adding to it and to see if I needed to reinstate. That's all. I don't expect anyone here to fix it. I just asked for input, in case. I agree that I should not reinstate or add another SSRI.

 

The EDS is a muscle pain thing and a degenerative disc thing only...that is not my issue right now and I have not been officially diagnosed with that yet either. And if I I do have it- it is not the skin or vascular EDS. It is just the hypermobility of joints kind, and that causes arthritis/muscle pain. I have been told it looks like I have it and I was told by one doctor to possibly avoid muscle relaxers. That is the only reason I brought it up. I can still take them if I need to. 

 

The glutamate theory was only because apparently prednisone raises glutamate and if you have a sensitivity to glutamate, it can cause problems. Since I've been a jittery hypersensitive disaster since prednisone/prozac, I thought that explanation fit. Neurologist had told me that she thought steroid and prozac overstimulated my brain.... I don't know if it is glutamate. It just seemed to fit. There are articles on here about glutamate/gaba....So I thought that made sense. I know it could be any number of things.  I am willing to try the fish oil, and fish. And B12. I think they checked my B12 three months ago and it was ok. It may have gone down since then. I was extremely low on D but we brought it up. Still on the low side probably. I will probably do another panel soon. D is stimulating to me and is hard to take. B vitamins as well. So I'll have to start small, like you said. My blood panels were good. No deficiencies except D. Protein was fine. I think they just tested protein last time I went to ER.

 

I agree with you on not adding another SSRI. I will not be doing that. I am willing to possibly give the Flexiril (Cyclobenzaprine) a try at the very small dose you mentioned. It does raise serotonin I think. Do you think that will be a problem?

 

I didn't mean to come off as expecting a fix for everything and I apologize if I did. I am not thinking all that clearly. The eyes were very concerning and seemed to coincide with the timing of drug interactions, so I asked. There are articles about SSRI'S and visual stuff so I thought it was relevant. But I am getting help for the eyes finally, I don't expect you to fix it - I have prism glasses being made. Hopefully will have them in 2 weeks. I am here to get help with my withdrawal from prozac after being on it for 12 years and only 1 month taper, and help with my messed up nervous system after  horrific prednisone reaction. And hopefully with the tremor and dystonia, as I believe (and hope) they are drug caused. 

 

 Anyway, all of the advice has been a help to me. I appreciate all the info that has been offered and like I said, this site has helped far more than any of the doctors I've gone to over the last several months, even though we've met our $10,000 deductible this year(!!!) Thank you. I will try to be more patient with healing and expect it to be very slow. I am going to order the fish oil today and I will look at B12. 

[Altostrata]

1 hour ago, SOcean said:

Like last night I did a little better, but most nights I only get 4-6 hours. Since stopping the fluoxetine I wake up at 4am every morning with that weird surge feeling and cannot go back to sleep. I usually fall asleep around 8pm on the couch, wake up every few hours. Fall asleep for short periods of time, wake up at 4, and then I'm up. I do feel the akathisia has improved though. 

 

That recovery and sleep pattern is not too bad for withdrawal syndrome, especially since you're only 4 months off. The 4 a.m. surge feeling is common. If you improve your sleep, some of your other symptoms might resolve. You might try melatonin and darkening your bedroom to block out morning light stimulation, see

 

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

 

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

 

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

 

What is the sleep cycle?

 

Melatonin for sleep: Many people find it helpful

 

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

Waking with panic or anxiety -- managing cortisol spikes

 

1 hour ago, SOcean said:

The EDS is a muscle pain thing and a degenerative disc thing only...that is not my issue right now and I have not been officially diagnosed with that yet either. And if I I do have it- it is not the skin or vascular EDS. It is just the hypermobility of joints kind, and that causes arthritis/muscle pain. I have been told it looks like I have it and I was told by one doctor to possibly avoid muscle relaxers.

 

You'd need a more certain diagnosis to use EDS as a grounds to make any decisions about taking muscle relaxants. Doctors make offhand, uninformed remarks all the time.

 

1 hour ago, SOcean said:

I am willing to possibly give the Flexiril (Cyclobenzaprine) a try at the very small dose you mentioned. It does raise serotonin I think. Do you think that will be a problem?

 

The neurotransmitter theories are driving me a little crazy. I don't know if Flexeril will be a problem, for any reason.

[justjosh5000]

@SOcean how have you been doing the last few weeks? Let us know. Sending lots of love  ❤️❤️❤️

[SOcean]

7 hours ago, justjosh5000 said:

@SOcean how have you been doing the last few weeks? Let us know. Sending lots of love  ❤️❤️❤️

Thank you for asking. That was very nice of you.

 

Not well, unfortunately. Saying things have been have been bad is an understatement but may finally be getting some answers.

 

Around Thanksgiving, my vision deteriorated to a point where I could hardly see, and no one could really figure it out. My balance got so bad I was walking with a cane. I started falling. I had stop driving. I became disabled pretty much. Husband took over my care. We went to ERS - they didn't do much but I was referrred to headache clinic and ENT for balance testing. 

 

 I underwent the vestibular testing last week and was diagnosed with a 30% vestibular loss in my left ear. Meaning something attacked my ear nerve at some point and I lost my balance system in my left ear,  and I haven't fully compensated yet. I do not know what happened to my ear but I can tell you that this is hell. Ironically I think it happened awhile ago, possibly up to a year or more, and  prozac was masking the vestibular disorder somewhat. Now that I am off it, the symptoms are worse and I have to compensate again.

 

Ironically the doctors think I need to get on amitriptyline for treatment of the vestibular issues and vestibular migraine. I do not want to get on another AD for obvious reasons, so I am trying to fight through this hell without doing that. My gut is telling me another AD would make things much worse, especially since I am still in withdrawal and I'm betting I would get akathesia, since only a short time ago my akathesia finally went away. It is hard though because SSRI'S and tricyclic AD's are often used to treat vestibular disorders and migraines and that is what the doctors are mainly trying to prescribe for me. Especially amitriptyline and noritryptaline, and Cymbalta. I have explained to the doctors that I did badly on prozac and that I am in withdrawal and don't want another AD. They get frustrated with me for not trying what they prescribe. My other options are mostly anti-convulsants. 

 

I am still having neurological tests for my other issues, but I have a feeling that most of this is vestibular and withdrawal caused. My tremors and some of my neuro symptoms from prozac have calmed down quite a bit, as have the muscle spasms and fasciculations. I still have blepharospasm in my eyes in certain positions.

 

I also was diagnosed today with hypermobile Ehler's Danlos Syndrome, which I suspected I had, but wasn't confirmed. And am being tested for POTS disorder, which goes with EDS. So I have a lot of strange health conditions, which really sucks, but it is nice to see that my symptoms are real. Doctors have been ignoring me for a long time.

 

For my eyes, I have a micro misallignment in left eye and (maybe my EDS caused extra eye strain) so all the eye muscle strain that had was making it seem like I was losing vision. Plus whatever migraine and vestibular issues I have going on. I have prism glasses now and things have improved. Will continue to adjust prism and see how it goes.

 

So basically have been falling apart, but am slowly getting answers now and working towards recovery. Altostrata was right - there are many health issues here. But withdrawal is in the mix and has complicated things. I feel w/d has calmed down somewhat. I'm sleeping better. 4am wake-ups have calmed. Akathisia has mostly gone. Now my brain has to try to learn how to work without the SSRI. I feel somewhat like I have a TBI. The vestibular stuff doesnt help.

 

Trying to avoid drugs, which is hard, but I can't handle any side effects on top of everything else. So we'll see how it goes. Doctor did prescribe flonase and allegra which I need to take but that is it so far. Was on meclizine for dizziness but now that I am in vestibular therapy, I have stopped. 

 

My hopes are that with my glasses and maybe with vestibular therapy, I will be able drive again soon and maybe be able to do small errands like grocery, shopping, etc. I will never take things like that for granted again. And hopefully I will continue to improve and be able to function again. It has been very hard on my husband and 11 year old. 

 

Anyway, thank you for asking how I'm doing. I have a long recovery ahead and will always have complications from EDS and POTS to deal with. But hopefully things can improve as far as balance and w/d and mental state. I am pretty young for this kind of health crisis but hopefully I will come out of this a stronger and better person. And hopefully I can do it without another AD. 

[SOcean]

Topic title before merging with original introduction topic:  Here I am Again. Amitriptyline?

 

I have been dealing with mulitiple health issues since coming off Prozac in August and since a steroid reaction in June. Most of the health issues were there before, and I believe Prozac was masking my vestibular issue. I also developed a functional neurological disorder after the steroid reaction called PPPD. 

 

 I am now in vestibular therapy but my balance keeps getting worse instead of better and I believe this is related to withdrawal. The longer I am off, the worse I get. I am living in a fog and my head feels like it floats above my body. My balance is so bad I can't walk down the street. I cannot drive.

 

The treatment for vestibular disorders, PPPD and vestibular migraine (which they also think I have) are usually anti-depressants and vestibular therapy. I am doing the therapy but the doctors and my husband are pushing me to get on amitriptyline because I am getting worse and worse and I can't function. 

 

I have never been on a tricyclic antidepressant. I am scared too because I am still in withdrawal and I had akathisia, among other symptoms. 

 

I have had 5 doctors tell me to try it. 

 

I do not know what else to do at this point though. I have a 10mg tab that I can break in half to start. 

 

I have tremor (possibly essential tremor) and I had neuro symptoms from prozac. So this is the last thing I want to do. But I don't know what else to do at this point. 

 

 

Edited May 15, 2020 by ChessieCat
added topic title

[Snorky]

On 12/24/2019 at 11:42 PM, SOcean said:

I have been dealing with mulitiple health issues since coming off Prozac in August and since a steroid reaction in June. Most of the health issues were there before, and I believe Prozac was masking my vestibular issue. I also developed a functional neurological disorder after the steroid reaction called PPPD. 

 

 I am now in vestibular therapy but my balance keeps getting worse instead of better and I believe this is related to withdrawal. The longer I am off, the worse I get. I am living in a fog and my head feels like it floats above my body. My balance is so bad I can't walk down the street. I cannot drive.

 

The treatment for vestibular disorders, PPPD and vestibular migraine (which they also think I have) are usually anti-depressants and vestibular therapy. I am doing the therapy but the doctors and my husband are pushing me to get on amitriptyline because I am getting worse and worse and I can't function. 

 

I have never been on a tricyclic antidepressant. I am scared too because I am still in withdrawal and I had akathisia, among other symptoms. 

 

I have had 5 doctors tell me to try it. 

 

I do not know what else to do at this point though. I have a 10mg tab that I can break in half to start. 

 

I have tremor (possibly essential tremor) and I had neuro symptoms from prozac. So this is the last thing I want to do. But I don't know what else to do at this point. 

 

 

Hi

 

I'm probably not best person to act due to my amitriptyline journey and experience. Gist is I was devised to move from ven to am last year to combat a/d and fibromyalgia type symptoms. If you look at my thread, you'll see I went from 25-100 mg b4 reducing and abruptly stopping on 25 in Sept. I had terrible adverse reaction while on med, and now dealing with massive mental and physical withdrawal issues. (Including Parkinson type tremor and tics)

 

Defintely a disaster for me.

 

Hope you find some resolution.

[SOcean]

Thank you for the reaponse. I am in a bad situation and don't know what to do. The vestibular issues I have are treated with anti depressants and I am being pushed to take something. I am also having extreme headaches and really bad visual snow. I am so ill but react so poorly to drugs. It is a horrible situation. I am not functional or able to drive, go anywhere and can barely take care of myself dur to vision distortion and dizziness. Also, just plain ill will all my issues. I wish there was something I could take. 

[Snorky]

34 minutes ago, SOcean said:

Thank you for the reaponse. I am in a bad situation and don't know what to do. The vestibular issues I have are treated with anti depressants and I am being pushed to take something. I am also having extreme headaches and really bad visual snow. I am so ill but react so poorly to drugs. It is a horrible situation. I am not functional or able to drive, go anywhere and can barely take care of myself dur to vision distortion and dizziness. Also, just plain ill will all my issues. I wish there was something I could take. 

Hi

 

Sorry to hear you’re in such a poor state. Hopefully one of v helpful mods can advise.

[Icip]

How are you getting along now @SOcean?

[Hellbutrin]

On 12/29/2019 at 6:45 AM, SOcean said:

Thank you for the reaponse. I am in a bad situation and don't know what to do. The vestibular issues I have are treated with anti depressants and I am being pushed to take something. I am also having extreme headaches and really bad visual snow. I am so ill but react so poorly to drugs. It is a horrible situation. I am not functional or able to drive, go anywhere and can barely take care of myself dur to vision distortion and dizziness. Also, just plain ill will all my issues. I wish there was something I could take. 

How are you doing now SOcean?