desertchild - I need your help

[desertchild]

Hi everyone

I need your help! I knew nothing about WD, nothing about tapering, as recommended by SA, until +/- 4 weeks ago, when I stumbled upon your forum, out of desperation, searching for help as my body was spinning out of control. I feel embarrassed to share my story with you, because when I wrote some of it in order to register, looked at the different cocktails given to me, I realized what was done to my body, and what I did out of sheer ignorance by tapering too fast.

 

I’ll briefly try to explain the medication cocktails below: Jan 2014 hospitalized for severe anxiety and depression; left the hospital with meds mentioned. I developed extrapyramidal symptoms: akathisia, dystonia, pseudo parkinsons and the quetiapine fumarate was changed to Abilify with no tapering. Severe weight loss, poor functioning, anxiety, depression. Flown to South Africa where I was hospitalized in Jul 2014 and given a new prescription as mentioned below. The prescription was changed again in Dec 2014.

 

I did better, not well, but could return to work. (I am a physical therapist.) Weight loss continued and pharmacist recommended I halved the Brintellix to 10 mg which I did. All tests done were normal. Strange symptoms started: burning sensations, agitation which finally peaked into a manic episode and I decided to quit my medication. Tapered over a period of 8 weeks, which I thought was ample! Went off all medication except for the Ambien and Alprazolam on the 9 December 2015.

 

It is 15 weeks now and it has been horrendous for me and my family. My symptoms appear cyclic. It started at noon, but the last few weeks it shifted to between 15h00 and 16h00,  gradually build up to the point where I have raging anxiety, severe deep burning over my coccyx, legs, and arms; arthritic pain in joints; ants crawling all over my skin; blurred vision; foggy thinking, irritable, deep headache, very disturbed sleep and no appetite. I struggle to keep my weight above 49 kg.

 

I realized I’ve destabilized and I am afraid and I feel very lonely.  There is no one, in the medical field, here where we are, that I can go to for help. They don’t know anything about protracted withdrawal syndrome or what tapering entails. I do have incredible support from my family and a few friends. I do not know what is going to happen to me? What does a crash mean? I read about reinstate – what would that mean for me? What kind of medication do I reinstate to, should I reinstate? Is it not too late in any case?

 

At times, I feel I am going to lose my mind. I still work, but it is so difficult. I do not know that staying at home will be any better. I do not know anything anymore. All I’m praying for is a brief reprieve, a break. I do not know how much longer I can go on like this? I am also angry for what specialists, people I trusted, did to me, and I have no doubt the intention was to help me. I feel through, discovering AS and the incredible, informative material provided, I am more knowledgeable, but I also feel I’ve received a life sentence, because of the horrible tapering process that I initiated out of ignorance. Any help, any advice will mean so much to me. 

Edited March 14, 2016 by KarenB
added paragraph breaks

[KarenB]

Hello Desert,

 

It is always a bit of a shock when you realise the situation you are in, but don't feel embarrassed because we've all ended up here by similar means.  There seems to be a concerted effort to medicate the population. 

 

Healing can be slow, for sure, but it does happen.  Your 'life sentence' will be commuted to something shorter - maybe a couple of years. 

 

Reinstatement is an option for you - although less likely to work as it's been a while since your last dose.  Some people here have found success in reinstating this far out, for others it hasn't worked.  With the severity of  symptoms you are getting, I'd be inclined to give it a try.  My best guess would be to start with a low dose (say 5mg) of Wellbutrin, since that was the drug you were on for the longest, but a more experienced mod may have further advise about that.

 

Thanks for giving so much detail in your signature - it really helps us to see your situation. 

 

You could start taking Fish oil and Magnesium, which many people find useful during withdrawal.  You might also like to look at Non-Drug Techniques to cope with emotional symptoms.

 

Have a read of those and then you can come back to this thread to discuss things further.  This will be your journal to record your tapering and healing progress, and to ask questions.  

 

Welcome to s/a,

Karen

[desertchild]

Karen thank you for coming back to me. You've also had a difficult 5 years with sudden switches and severe wd. I admire you for where you are now and wish you only the best. I have been taking Fish Oil and Magnesium, but I think I need to change the dosage. I am already going through the suggested reading topics and will get back with questions. Something I've discovered in the last 2 weeks when my body "lights" up and my symptoms grow worse towards the evening is to go to the ocean and stay in the water for +/- 20 minutes. I don't like bathing in cold water, but the immersion definitely calms down my system for a few hours. 

I've decided to wait with reinstating, for now, especially because it is more than 3 months without medication.

 

Thanks again.

 

desertchild

[KarenB]

You're welcome Desert,

 

Just keep paying attention to what your body is telling you.  Nice idea getting to the ocean.  Water is very soothing and healing - probably very womb-like. 

 

Karen

x

[desertchild]

Update from desertchild - 7 months out 

 

It's the first time that I'm venturing out on this forum again after joining. It's been such a rough, scary and confusing journey where I've spent most of the time in the Benzo forum working with Wellness and Bubble on trying to stabilize me on the remaining alprazolam and Ambien I'm still taking. Where I would have been without Wellness's help, encouragement and hanging in there with me, is hard to tell. I also appreciate Bubble and Shep's encouragement at times I felt so alone, fearful and discouraged.

 

Yesterday was 7 months since I quit my medication and there are no words to describe how rough it has been. I sit here and wonder how did I survive it till this moment? 

Having been exposed to harsh poly-pharmacy, especially the last 2 years, makes this so hard to distinguish anything from anything else: what's causing what, if it's even possible to know?

 

I've only had a wave ever since this started. Symptoms have changed and morphed into others, but there was little reprieve up to now. Struggling to get settled into how to take the benzo(alprazolam) and z-drug in an effort to try to relieve some interdose withdrawals was also difficult. The cross-over to long-acting Valium, which seemed like a good idea at the time, went wrong for me in that I got extremely depressed and suicidal. So once we realized that, the cross-back to alprazolam started which I completed on the 6th of July. My CNS has, therefore, been subjected to constant changing, added to the already awful state of withdrawal it is in. 

 

I've been working all through this, but have been limping along the last couple of months. I'm a physiotherapist and I'm not sure how much longer I can carry on doing it? It's increasingly becoming more difficult. I'm also not sure, either, what will be best for me: hanging in there, working or staying home? Staying home will have its benefits, but will also of course have personal and financial ramifications. 

 

 Symptoms 

 

burning muscles and aching joints - it feels as if acid is pouring out of my body

skin and sensation disturbances - as if my limbs do not belong to me, as if there is a layer of jelly under my skin; my body is foreign to me - I guess that is depersonalization, right?

burning tongue and mouth; upper front teeth aching

 

almost constant, serving as a baseline, feeling of dread and horror, which escalates and spins out of control at times when stressful situations occur - I'm actually almost stress intolerant at the moment. An ordinary conversation about a simple life decision can set me off.

 

irrational and often very dark and ruminating thoughts, catastrophizing; 

 

Unstable emotions: I've never cried as much as I did the last 4 months. I was not a crier, but the slightest trigger can pull tears from me. I'm often very irritable and the last few days even felt anger welling up inside of me.

 

Irritable bladder and GI disturbances - I've lost 13 kg of weight this far and weighed 46,4 kg this morning. This, in itself, creates so much fear, because I do not know where and when it will stop. I've become very sensitive to sugar, use no stimulants, preservatives, gluten and have tried the last few days to focus on high calorie/protein foods. I try to, as Wellness, suggested make every bite count. It is hard, because I have no appetite at all and it is really force feeding myself at the moment. Any advice or suggestions will be deeply appreciated.

 

Disturbed sleep, and insomnia, especially, when I tried to change to 6x/day dozing, as you will see in my signature. Now that I'm back on 5x/day dozing I manage 4 + hours

 

Very sensitive to touch, sound and light - external stimuli.

 

My symptoms have a cyclical pattern. I wake up, aware of symptoms, but usually anytime from 3 pm onwards they escalate into becoming severe. It makes me sad, because every evening my husband comes home he finds me in an emotional and mental heap. 

 

Self-Care

 

I'm on a steep learning curve and do as much as my harassed and hurt brain allows me to read and educate myself on what's happening to me. I think, understanding, helps to normalize (if that's even the right word), not only for myself, but also for the few people, left behind around me, who is supporting me. Being in such survival mode has also resulted in us becoming socially more isolated. My husband is a pillar of strength, believes in what I do, and if it wasn't for him and a friend I have at work I'm not sure I would have made it to this day where I can say it is 7 months. 

 

I've stopped reading stuff on other forums or listen to stories on YouTube. It's creating too much fear and anxiety and I lose hope and vision and it leaves me depressed for days with thoughts that 'this will never end.'  SA has been life-saving and I mean that in the literal and figurative sense. I try to focus on positive, success stories, helpful and encouraging meditations and I'm learning more from others here on SA. I will continue to explore the links they provide to what they found helpful, and search trying to find what works for me or not. It changes all the time. Meditation or music or reading that helped one night will not the next.

 

I joined a yoga class which is good for me, even though I never want to go, because of my aching body and joints. I take my dogs for a walk every day.

 

Mindfulness meditation, which is the most difficult for me to do at the moment. My thoughts DO NOT want to stay in the present! They want to go dwell in the past and make me more depressed or run into the future and catastrophize about everything that can go wrong and increase my anxiety, hopelessness and feelings of dread exponentially.

 

Diet: I'm still trying to find a way to stabilize my diet. 

 

I hang on to Wellness's words when I feel I cannot go on: " you have to believe others when they say you will get better" and that is the recurring theme of encouragement from the few people that I had interaction with.

 

Up to now I have fought withdrawal and what is happening. I wanted it to be over, searched for quick fixes. It did not happen and I've come to realize there is no quick fix. Time, and only time, will bring healing. Am I trying to convince myself? There are thousands out there on the same, yet different for each, journey. I learn every time I read the stories of others, the ways they find to cope and I have to be honest. Withdrawal and what's taking place in my body and life has brought me to a different place: a place, hidden to most of the world. My life has become a moment to the next moment hang on. I've had 'softer' days, and I guess I should think of them as windows. I don't know what a window is. 

 

I will appreciate any help, advice or encouragement from friends at SA.

 

Kind regards

desertchild

[Altostrata]

Thank you, desertchild. I'm very sorry you're feeling so poorly.

 

Can you get acupuncture for some of the physical symptoms?

 

Have you tried a very bland diet for the gut symptoms? Such as basically chicken, rice, cooked vegetables?

 

Are you light-sensitive? If so, have you tried wearing dark glasses most of the time?

[desertchild]

Thank you, desertchild. I'm very sorry you're feeling so poorly.

 

Can you get acupuncture for some of the physical symptoms?

 

Have you tried a very bland diet for the gut symptoms? Such as basically chicken, rice, cooked vegetables?

 

Are you light-sensitive? If so, have you tried wearing dark glasses most of the time?

 

Dear Altostrata thank you so much for writing to me. I appreciate it so much. I will look into acupuncture.

 

We live in a small community and I've heard of someone, but she speaks German. I do not how well English. I will find out. My appetite is so very poor that cooking has become such a chore for me. I will work harder on that and focus on what you suggested. Yes, I do wear sunglasses when out and try to use soft lights around the house.

 

I'm afraid I'm not going to be able to work much longer if I continue to feel like I do. Today is most awful. Hot flushes wash over me all the time. I did write Wellness. I feel so bad to be a nuisance, but I do not know where to go else.

Thanks again.

desertchild 

[Altostrata]

Yes, your benzo use could be a big problem, it was wise to confer with Wellness.

[desertchild]

Hallo Everyone

 

My condition is worsening. I'm in acute shock/withdrawal. I had a failed cross-over to Valium a few weeks ago, and since 7 July I am back on alprazolam - multidosing 5 times/day. Friday, last week, I dropped Ambien and updosed the alprazolam. I've slept 3 hours since Friday and I cannot go on. I've communicated with Wellness and Shep and they both suggested I come to the Main Forum for help from you.

 

I'm thinking of reinstating to something that will help me feel better. I really do not want to, but I do not know how I can go on like this - especially now that the insomnia is so bad. 

 

We only find Melatonin 3mg here and it is a capsule. I do not know should I divide the powder to reach a lower dosage? I know it doesn't dissolve in water and that 3 mg is to high. I've tried chamomile tea. I've spoken to a homeopath who suggested a tablet she carries: 1,5mg Melatonin, theanine, magnesium, some niacin, as well as a very low dosage Valerian. She said I can I do not feel comfortable with anything I do not know at the moment, being so desensitized.

 

I cannot think clearly, my head doesn't ache, but I have a pulsed pounding and it feels as if a rubber band is stretched in the middle of my brain and there is no switch-off button. I'm so agitated and have to move around. I feel I want to crawl on all fours on the floor. My thoughts are obsessive, ruminating and I have anxiety rage through me almost all the time.  

 

Just the thought of nighttime already brings so much fear and angst. To see hour after hour pass creates so much fear and more anxiety. I watch no TV, nor work on my computer, 2 - 3 hours before, have candles burning, take a magnesium bath.

 

I cannot listen to the meditations and music that helped anymore, because it seems to wire my brain and make me more wild. 

 

I am sorry this is such a negative post, but I am desperate and I hope you can come to my aid. I will try anything you suggest.

 

What will happen to me if I cannot sleep?

 

Kind regards

desertchild

[Shep]

 

We only find Melatonin 3mg here and it is a capsule. I do not know should I divide the powder to reach a lower dosage? I know it doesn't dissolve in water and that 3 mg is to high. I've tried chamomile tea. I've spoken to a homeopath who suggested a tablet she carries: 1,5mg Melatonin, theanine, magnesium, some niacin, as well as a very low dosage Valerian. She said I can I do not feel comfortable with anything I do not know at the moment, being so desensitized.

 

 

 

 

Hi, DesertChild.

 

We've been corresponding over on your benzo thread, but I'm glad to see you posting here for more support.

 

Please be very careful with all supplements. From what you're describing, your CNS is greatly destabilized. Valerian can be extremely dangerous for people on benzos because it affects GABA. For more information, please read: 

 

Valerian Root

 

I used Melatonin for a couple of weeks, just long enough to try and re-set my sleep. I could only find 1 mg pills, so I used a pill cutter and took .25 mg or .50 mg.  You may be able to cut the 1.5 mg in fourths to get .375 mg. Here is more information on melatonin: 

 

Melatonin for Sleep

 

Right now you are in the midst of the severe symptoms, so as clean as simple as you can make this, the better it will be in the long run for your CNS.

 

 

I would only add one supplement at a time because you need to be able to tell if a supplement is causing problems. Since withdrawal comes with waves and windows anyways, try to keep your supplement use as simple as possible. Except for a couple of weeks with melatonin, I've had to avoid supplements. I'm getting Omega 3 by eating fish and I use epsom salt baths to get magnesium. Sometimes I'll drink tart cherry juice because it has melatonin. So if you can target your diet toward getting these types of nutrients, you may avoid some of the pitfalls of using supplements. Just a thought. 

 

Sending healing vibes your way. Please keep posting updates. 

[Altostrata]

desertchild, what time of day do you take your blood pressure medicine? What is it? Do you get any symptoms afterward?

 

Have you had your thyroid medication reviewed recently?

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.

[desertchild]

 

 

We only find Melatonin 3mg here and it is a capsule. I do not know should I divide the powder to reach a lower dosage? I know it doesn't dissolve in water and that 3 mg is to high. I've tried chamomile tea. I've spoken to a homeopath who suggested a tablet she carries: 1,5mg Melatonin, theanine, magnesium, some niacin, as well as a very low dosage Valerian. She said I can I do not feel comfortable with anything I do not know at the moment, being so desensitized.

 

 

 

 

Hi, DesertChild.

 

We've been corresponding over on your benzo thread, but I'm glad to see you posting here for more support.

 

Please be very careful with all supplements. From what you're describing, your CNS is greatly destabilized. Valerian can be extremely dangerous for people on benzos because it affects GABA. For more information, please read: 

 

Valerian Root

 

I used Melatonin for a couple of weeks, just long enough to try and re-set my sleep. I could only find 1 mg pills, so I used a pill cutter and took .25 mg or .50 mg.  You may be able to cut the 1.5 mg in fourths to get .375 mg. Here is more information on melatonin: 

 

Melatonin for Sleep

 

Right now you are in the midst of the severe symptoms, so as clean as simple as you can make this, the better it will be in the long run for your CNS.

 

 

I would only add one supplement at a time because you need to be able to tell if a supplement is causing problems. Since withdrawal comes with waves and windows anyways, try to keep your supplement use as simple as possible. Except for a couple of weeks with melatonin, I've had to avoid supplements. I'm getting Omega 3 by eating fish and I use epsom salt baths to get magnesium. Sometimes I'll drink tart cherry juice because it has melatonin. So if you can target your diet toward getting these types of nutrients, you may avoid some of the pitfalls of using supplements. Just a thought. 

 

Sending healing vibes your way. Please keep posting updates. 

 

 

Shep 

 

Since I stopped the Ambien, I've also stopped sleeping. Last night I had zero sleep. I fear nighttime. As I toss and turn my anxiety and fear escalates, my body lights up, and I end up being a crazy mess in the morning. When I take my nighttime alprazolam dose at 10:30 it all starts, and spins out of control as the night progresses, because at 3:30 I have to dose again! 

 

I will have to stop work and I have no patients scheduled for next week. We will make a final decision about that tomorrow afternoon.  

 

I'm in such a poor state. I have to force feed, I'm pale, have severe depression and anhedonia. Life has become a nightmare for me. Nothing is normal.

 

This is what I try to do before bedtime. Turn the lights down, shut the TV off 2 hours before 10:30, no computer, and had some chamomile tea. We can only find 3 mg melatonin (I read the link you provided) and it is in capsule form. So I took out the powder and tried to divide it, more or less to get to .5mg. Tuesday night when I took it, I did sleep some( 3- maybe 4 hours): very interrupted, vivid dreams and I when I woke up my thoughts were more obsessional. I woke up with a slight headache and towards the evening the one side of my neck/head was pounding. I've never had this before during the last several months. I don't know where, but I want to say I've read somewhere that melatonin can bring on a headache, so I was afraid to take it again last night. Do you know whether that is the case?

 

Then the other thing: I've never had a good sleep pattern, most of my life. As a teenager my father took me to a neurologist and because I was so young the specialist suggested that I maintain a rigorous exercise program which resulted in me becoming a long distance runner. After my first depression, 1991, I was on and off of sleep medication until last Friday. So there is a HUGE psychological overlay in regards to sleeping for me, because of countless nights over the years that I was plagued by insomnia. In Alto's article on MELATONIN, she says if you had a fairly good sleeping pattern you can get back into it after a while. See, I never had, so this is why sleep creates so much fear and anxiety, because of my history. How will it be possible for me to get back to sleeping without help? I want to.

 

I don't know where all of this is going to end? Everyone assures me that I will heal and I will get better. With my shock/withdrawal state, have I not destabilized to the point where I get locked into a pattern where it cannot revert back? I cannot imagine going on like this for much longer. If there was a faint dot of light somewhere for me to cling to and make me hopeful, but up to now it's not been the case. It's only getting worse.

 

We turn the lights down at night, no TV hour and half before bedtime, no computer, my husband has moved out of the bedroom to make it as easy and comfortable for me which is also hard. Every mm of our life is being plowed over at the moment. If I know this is temporary then I guess it will be ok, but there has been no turning point yet and I have very little hope left. 

 

Kind regards desertchild

[desertchild]

desertchild, what time of day do you take your blood pressure medicine? What is it? Do you get any symptoms afterward?

 

Have you had your thyroid medication reviewed recently?

 

Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages.

 

Hi Alto

 

I take my bloodpressure and other medication (thyroid and hormone) in the morning. I cannot say that I noticed an increase of my symptoms as a result. I don't know why I think there is some link between symptoms becoming worse - especially racing anxiety, chest pressure, and burning after I had something to eat, but interdose withdrawal symptoms are also very bad, so it could be that as well. Could it have anything to do with cortisol spiking? I want to stop the hormone pill, because I do not think that is necessary anymore, but I am so afraid to destabilize anything anymore at this time. I have no idea what effect stopping it will have on me nor how and if it contributes to my poor state?

 

I got all the tests for my bloodwork back yesterday, and everything tested normal. The dr's words actually were - test results are excellent: sugar, thyroid, cholesterol, kidney and liver functions.

 

I have not stabilized yet, Alto and I'm losing hope, because it seems as if I'm getting worse by the day.

 

I'm going for an acupuncture treatment this afternoon. Anything you can suggest in regards to that?  This is someone who will not know anything about protracted withdrawal syndrome, so I have no idea what her approach is going to be. Does she focus on the worst of the symptoms: anxiety, depression and as of Friday, severe insomnia? 

 

I do have a journal, but I guess I have to become even more specific. It's so hard though, because I do not have a norm of 'better' that I can compare it with. I compare symptoms to symptoms, so it becomes convoluted. What caused what, because it seems to be there all the time, regardless.

 

Kind regards desertchild

[Shep]

Hi, DesertChild.

 

You've provided a lot of insight into what is going on, both physiologically as well as psychologically.  Thank you for posting it. Having a long time battle with insomnia will no doubt make this symptom even worse for you. But I had insomnia and depression prior to going on meds when I was 17, so those are two symptoms that I've targeted my non-drug coping skills toward as I've gone through this process. No easy quick fix, but a process. So there's no reason to think you won't come out of this much stronger than you went into it. 

 

Right now you're dealing with two things - withdrawal and collateral damage. Worries about keeping a job make insomnia so much worse. I lost a very good job when I came off my SSRI. It took about 9 months before finding another job, something much less stressful that I could do during my benzo and Seroquel withdrawal. I moved into a cheaper apartment. I made do. I survived. I learned and evolved. 

 

You may also be suffering from not being able to run. I'm sure you benefited enormously from that, so it's a great loss now. But with your education and experience as a physical therapist, you have an advantage. Working in the medical field has great job security plus you know a lot about issues that will help you heal and take care of yourself. 

 

So if your thoughts are going toward the catastrophic such as "I can't keep a job, therefore I'm going to be unemployed forever", here's something that may help:

 

"Change the channel" -- dealing with cognitive symptoms

 

As hard as it is when you're in a crisis and survival state, try to gear your thoughts away from the catastrophic. You have a safe place to live, you have healthy food and are working on ways of getting more nutrition so you stop losing weight, you are going to be okay.

 

These are the thoughts to change the channel to. I'm glad you have some time off from work. Try to rest and to eat. Concentrate on your breathing. 

 

This is a breathing technique I've used and found helpful:

 

https://www.youtube.com/watch?v=YRPh_GaiL8s

 

It's good for letting go of the panic state. 

 

And there's so much more out there that you can explore and learn as you go through this. These are the skills that will help you deal with your current symptoms, and then build a baseline so that you won't need pills for sleep when you heal. 

[Shep]

 I want to stop the hormone pill, because I do not think that is necessary anymore, but I am so afraid to destabilize anything anymore at this time. I have no idea what effect stopping it will have on me nor how and if it contributes to my poor state?

 

 

I got all the tests for my bloodwork back yesterday, and everything tested normal. The dr's words actually were - test results are excellent: sugar, thyroid, cholesterol, kidney and liver functions.

 

 

 

 

It's good your bloodwork came back okay. At least you know you're dealing with withdrawal now. 

 

I wouldn't stop the hormone pill at this time. As you mentioned, it could destabilize things and you are in a very fragile place now. 

[desertchild]

Hi everyone

 

I would like to know if you can help me with something. So many things and symptoms change and morph in my body that at this stage of withdrawal, where I've not stabilized yet, I'm not sure what causes or aggravates anything: diet, lack of sleep?

 

I am trying to figure out as I go along, read about different topics and self-care. It can be quite confusing at times, and I realize that I eventually need to find what works for me and what not. Right now, I find that difficult, because I feel I'm trying to deal with an issue and another one appears.

 

What I've now established though with certainty, is that there is a direct relationship between early morning spike of anxiety (any time from 3 am onwards) and finally a bowel movement, oftentimes bowel movements.

 

This morning it was especially severe and it did not abate until 3 pm, this afternoon. Right now, it is tolerable.

 

I've read about the vagus nerve involvement, cortisol spikes, irritable bowl and I'm not sure what is causing this severe early morning anxiety, or is it just another face of withdrawal? Is there anything I can try to do?

 

I will really appreciate your advice.

 

desertchild

[desertchild]

 

 I want to stop the hormone pill, because I do not think that is necessary anymore, but I am so afraid to destabilize anything anymore at this time. I have no idea what effect stopping it will have on me nor how and if it contributes to my poor state?

 

 

I got all the tests for my bloodwork back yesterday, and everything tested normal. The dr's words actually were - test results are excellent: sugar, thyroid, cholesterol, kidney and liver functions.

 

 

 

 

It's good your bloodwork came back okay. At least you know you're dealing with withdrawal now. 

 

I wouldn't stop the hormone pill at this time. As you mentioned, it could destabilize things and you are in a very fragile place now. 

 

 

Shep, thank you for your care and help. I really appreciate it.

 

desertchild

[Shep]

Hi everyone

 

I would like to know if you can help me with something. So many things and symptoms change and morph in my body that at this stage of withdrawal, where I've not stabilized yet, I'm not sure what causes or aggravates anything: diet, lack of sleep?

 

I am trying to figure out as I go along, read about different topics and self-care. It can be quite confusing at times, and I realize that I eventually need to find what works for me and what not. Right now, I find that difficult, because I feel I'm trying to deal with an issue and another one appears.

 

What I've now established though with certainty, is that there is a direct relationship between early morning spike of anxiety (any time from 3 am onwards) and finally a bowel movement, oftentimes bowel movements.

 

This morning it was especially severe and it did not abate until 3 pm, this afternoon. Right now, it is tolerable.

 

I've read about the vagus nerve involvement, cortisol spikes, irritable bowl and I'm not sure what is causing this severe early morning anxiety, or is it just another face of withdrawal? Is there anything I can try to do?

 

I will really appreciate your advice.

 

desertchild

 

Hi, desertchild.

 

The 3 am spike of anxiety is reported a LOT on the forum. This thread explores more:

 

Waking with panic or anxiety -- managing cortisol spikes

 

Do you think yours may be related to what you eat for breakfast due to how you feel after a bowel movement? You're right - all of this is connected. There is serotonin and GABA in the gut, so there's definitely a connection and a lot has been written about the vagus nerve. 

 

The Beyond Meds website is great for articles on subjects like this:

 

https://beyondmeds.com/2013/03/20/about-yoga-and-the-vagus-nerve/

 

I think I found that link in the thread on SA about the vagus nerve:

 

Vagus Nerve Stimulation

 

If you're into yoga, you may find some ways of helping your symptoms that way. Perhaps some gentle morning yoga targeting the vagus nerve would help, as you feel able. 

[Altostrata]

desertchild, do you eat any complex carbs? Since you're losing weight, I am wondering whether you might be in ketosis. This can raise adrenaline and cortisol.

 

Also, declines in blood sugar raise adrenaline, that is the way the body compensates.

 

If I were you, I would add complex carbs, such as chickpeas or lentils, to your evening meal. This will keep your blood sugar level throughout the night.

 

Since you found a little melatonin to be helpful, if I were you, I'd try it again, maybe a little less than last time. You need to gather data from several events before you can say it's a pattern.

 

It sounds like the melatonin can help you establish a tolerable sleep pattern; complex carbs can be helpful for this too. Some people find a good amount of protein in the evening, such as from whey protein isolate, aids sleep.

[desertchild]

desertchild, do you eat any complex carbs? Since you're losing weight, I am wondering whether you might be in ketosis. This can raise adrenaline and cortisol.

 

Also, declines in blood sugar raise adrenaline, that is the way the body compensates.

 

If I were you, I would add complex carbs, such as chickpeas or lentils, to your evening meal. This will keep your blood sugar level throughout the night.

 

Since you found a little melatonin to be helpful, if I were you, I'd try it again, maybe a little less than last time. You need to gather data from several events before you can say it's a pattern.

 

It sounds like the melatonin can help you establish a tolerable sleep pattern; complex carbs can be helpful for this too. Some people find a good amount of protein in the evening, such as from whey protein isolate, aids sleep.

 

Alto, I do think I'm in ketosis. I cannot get my weight to stabilize. This morning it went down to 46,6 again. I work hard on it, force feed, because I have no appetite. Having almost constant anxiety, and now added to that, the severe insomnia, does not help either, because it makes me feel so unwell. 

 

I so long for something to stabilize. 

 

I've started to add more carbs recently: brown rice, quinoa, lentils, etc. and I will look into the whey protein isolate options available. Thank you for the suggestions.  I'll do ANYTHING if it will help in the smallest way and bring some relief.

 

I went for the acupuncture, and definitely experienced some relief from the agitation and depression for a few hours. So, I will continue with that.

 

thanks again

desertchild

[desertchild]

I don't know what to do any more! My weight continues to drop and I eat hard. I don't think I've eaten so much before all of this started to happen.

 

I have raging anxiety all the time - it courses through my body day and night. What can I do? I try yoga stretches, breathing, go for walks, anything to calm myself, but it is relentless. It is anxiety that is eating me from the inside. I don't know what to do! I don't know how this can stop? It is spinning out of control!

 

I am not working anymore. I am engulfed by a black depression with severe anhedonia. 

 

How can this get better? 

 

Please help me!

desertchild

[desertchild]

Am I doing anything wrong? I cannot come to a point where I stabilize in some kind of way.

 

desertchild

[ChessieCat]

Hi desertchild,

 

Your Post #21 says:  "My weight continues to drop and I eat hard. I don't think I've eaten so much before all of this started to happen."

 

It may be helpful for the other mods if you could list what you have been eating since the beginning of August.

[Marsha]

Hi desertchild. I also take thyroid medication. In retrospect, and the knowledge I have gained about my hashimotos, I realize I was in a similar situation during the end of 2015 and early part of 2016. I discovered that my medical provider was not overseeing my hashimotos properly. I was hyperthyroid during that time. I am wondering what type of thyroid testing was performed on you. It could explain at least some of your intense anxieties. If you can and feel comfortable maybe you could post the particulars of your thyroid panel. Just a thought maybe worth investigating. I have learned many of my symptoms are thyroid related and I am taking steps to get to proper treatment.

[desertchild]

Hi desertchild,

 

Your Post #21 says:  "My weight continues to drop and I eat hard. I don't think I've eaten so much before all of this started to happen."

 

It may be helpful for the other mods if you could list what you have been eating since the beginning of August.

 

Hallo ChessieCat

 

Thanks for trying to help me. Here is what I eat and ChessieCat I have no appetite at all! I force the food down, because I know I have to.

 

Mon 1 Aug: breakfast:  2 scrambled eggs, during the morning: handful of mixed nuts, smoothie with protein powder: banana, tangerine, apple, double cream yoghurt, cocowater; lunch: chicken, rice, salad; afternoon:  handful of nuts; dinner: chicken/carrot/onion stew with chickpeas; before bed: toast with cheese

 

Tues 2Aug: same for breakfast, smoothie without protein powder; (I wanted to see if protein powder makes a difference to anxiety)  morning nuts, lunch:  fish, potatoes, salad, nuts afternoon, 1/4 avocado;  dinner: beef mince, rice, cabbage; nothing before bed. My stomach is so irritable with all the food that by 3am with the raging anxiety it starts up before I finally will have a bowel movement +/- 5 am, and then 2-3x diahrrea after that.

 

Wednesday 3 Aug: same breakfast, nuts, no smoothie; lunch: chicken stew, afternoon: nuts; dinner: (we had to meet visiting family at a restaurant - which was an ordeal in itself, to go out and socialize) chicken schnitzel with a few fries; nothing before bed

 

Thursday 4 Aug: 2 scrambled eggs with avocado, with slice of seed bread toast; nuts, smoothie: 2 bananas, apple, cocowater, t tablespoons double cream yoghurt; nuts, handful of crisps; dinner: 2 pieces fish, cabbage, sweet potato

 

I've also developed severe insomnia and slept 2 hours last night. 

 

Earlier this year I took a nutritional supplement meal used for malnutrition, because my weight loss started more than a year ago, before I knew what was going on and before SA and discovering that I developed protracted withdrawal. During the last few months everything deteriorated, and I stopped the nutritional supplement, because of the sugar and vitamin/mineral enrichment. I don't know if I should start with that again, but with my nervous system so sensitized I have no idea where to go, what to do, what is good, what is not? I am so confused and so fear-filled. I'm wasting away and it seems as if there is nothing I can do to stop it.

 

I look forward to hear from you and thank you.

desertchild

[desertchild]

Hi desertchild. I also take thyroid medication. In retrospect, and the knowledge I have gained about my hashimotos, I realize I was in a similar situation during the end of 2015 and early part of 2016. I discovered that my medical provider was not overseeing my hashimotos properly. I was hyperthyroid during that time. I am wondering what type of thyroid testing was performed on you. It could explain at least some of your intense anxieties. If you can and feel comfortable maybe you could post the particulars of your thyroid panel. Just a thought maybe worth investigating. I have learned many of my symptoms are thyroid related and I am taking steps to get to proper treatment.

 

Thanks Marsha

 

I was also diagnosed with Hashimotos (when we lived abroad), but because my thyroid levels were very stable the last several years, I actually have not even told my dr here, when we returned in 2011,  that I had Hashimotos! My levels were tested and accordingly medication was tweaked a few times the last 5 years.

I will go to the lab to pick up the thyroid panel, this morning. I am so desperate for help Marsha! I cannot go on like this.

 

desertchild

[desertchild]

Hi desertchild. I also take thyroid medication. In retrospect, and the knowledge I have gained about my hashimotos, I realize I was in a similar situation during the end of 2015 and early part of 2016. I discovered that my medical provider was not overseeing my hashimotos properly. I was hyperthyroid during that time. I am wondering what type of thyroid testing was performed on you. It could explain at least some of your intense anxieties. If you can and feel comfortable maybe you could post the particulars of your thyroid panel. Just a thought maybe worth investigating. I have learned many of my symptoms are thyroid related and I am taking steps to get to proper treatment.

 

Hallo Marsha

 

Here is the lab results for the thyroid:

 

Free T4:     13.12       (reference: 7.2 - 16.4pmol/1)

S-TSH            2.67      (reference 0.37 -  3.50 mIU/L)

 

I take Euthyrox which I guess is the same as Eltroxin: 1 day I take 50 microgram and then the next 25 microgram

 

My doctor (a GP) says it all looks fine. I don't know? Do you agree? Do you think I'm doing something wrong in how I take it? I've been doing it this way for probably a year plus. Is there something more I should test for?

 

I really appreciate your help in regards to this.

 

Kind regards

desertchild

[Altostrata]

desertchild, did you discuss the possibility that you may be taking TOO MUCH thyroid medication with your doctor? You can't tell whether the dosage is correct from labs alone.

[ChessieCat]

"Earlier this year I took a nutritional supplement meal used for malnutrition, because my weight loss started more than a year ago, before I knew what was going on and before SA and discovering that I developed protracted withdrawal. During the last few months everything deteriorated, and I stopped the nutritional supplement, because of the sugar and vitamin/mineral enrichment. I don't know if I should start with that again, but with my nervous system so sensitized I have no idea where to go, what to do, what is good, what is not?"

 

If you do decide to start taking this supplement meal again, I suggest you start with a small amount to see whether you get any bad effects.  If you find you are okay with a small amount, then gradually increase the amount.

 

Alto (previous post) questioned whether your thyroid medication dose may be too much.  I think it is a good idea to do that first.  But, on a more delicate topic, has the doctor considered parasites?  One of the mods mentioned this in the discussion of your situation so I thought it would be worthwhile mentioning.

[desertchild]

desertchild, did you discuss the possibility that you may be taking TOO MUCH thyroid medication with your doctor? You can't tell whether the dosage is correct from labs alone.

 

Alto

 

I can discuss it with her, but she will not be able to help me. She assured me yesterday again, that it all looks well.

 

I guess the only way I will be able to tell is to drop to 25mcg and see if that makes a difference. I know you cannot tell me what to do, for e.g. to drop the amount, I understand that, but how else will I know if what I'm taking at the moment is too much?  I can inform her or ask her whether I should do that, but I know that she will really not know. She wanted to prescribe Fluanxol (flupentixol) to me yesterday, for the anxiety which just showed me, again, she doesn't really understand what's going on. 

 

If I drop do you perhaps know how long will it take to show a difference? 

 

I want to and will do ANYTHING. I don't expect to turn a switch and it is all better. I know it doesn't work like that, but if I, out of ignorance, and/or total lack of support this side, continue doing something that could contribute to my current state, I want to be able to change it in an effort to see if it will make a difference, a slight difference. I want to do that. That is why I cannot tell you what the support from SA this far has meant to me and my husband.  

 

I have only 1 wish and 1 wish only - a little reprieve from this relentless onslaught day by day, and now night after night, as well. My mind is so unhealthy and once I lose the little thread of hope that makes me go on, I frantically search for it, but cannot find it and then I do not know why do I go on, how do I go on? This is hell. I need to understand again how to go on. desertchild

desertchild

[desertchild]

"Earlier this year I took a nutritional supplement meal used for malnutrition, because my weight loss started more than a year ago, before I knew what was going on and before SA and discovering that I developed protracted withdrawal. During the last few months everything deteriorated, and I stopped the nutritional supplement, because of the sugar and vitamin/mineral enrichment. I don't know if I should start with that again, but with my nervous system so sensitized I have no idea where to go, what to do, what is good, what is not?"

 

If you do decide to start taking this supplement meal again, I suggest you start with a small amount to see whether you get any bad effects.  If you find you are okay with a small amount, then gradually increase the amount.

 

Alto (previous post) questioned whether your thyroid medication dose may be too much.  I think it is a good idea to do that first.  But, on a more delicate topic, has the doctor considered parasites?  One of the mods mentioned this in the discussion of your situation so I thought it would be worthwhile mentioning.

 

ChessieCat

 

I did communicate with Alto about the thyroid medication.

 

Thanks. I'll try to take the supplement again, because I am more nauseous than ever before. It wasn't something I had to deal with up to now. So, even more so, I do not want to eat, prepare meals, think of food. What makes it hard though, is that I've not had a criteria I could measure symptoms against. I don't know whether stopping the Mg or Omega 3 made a difference, because my symptoms do not abate, regardless of what I do or not do. It's like comparing worse with worse. It's all so confusing.

 

My doctor has accepted what I'm doing, but she does not understand it at all, and she is of no help. What happens to and with me at the moment, is generated from my side. She'll do the blood work, if that is what I want, I can go for a ultrasound of my thyroid, if that is what I want. She doesn't know. She supports me in as much as she can, but she really doesn't want to get involve in understanding protracted withdrawal. She's known me for 5 years, she sees what I look like, in regards to the weight loss. I tell her how I feel and how it's going every time I see her. BUT she wanted to put me on Fluanxol, an antidepressant, for the anxiety, yesterday, because she wants to help me feel better! So it is a very lonely and isolated place in the medical community where we live. I'm a lonely whisper in a desert, literally and figuratively.

 

I appreciate your sensitivity about the parasites. I've grown up in Africa, in a home where my father was a GP, and we were de'wormed' (what we called it) every 6 months. Once we moved abroad and I took my kids to be de'wormed', the dr almost fell off his chair. It was so unheard of. 

 

I've not done anything about that, since we're back, so I'm totally fine with taking care of it, if it might be a contributing factor, and it might well be.We don't go to doctors here to get rid of parasites. You buy it over-the-counter. My problem now is: do I go the medication route? The medication is mebendazole. With my system so desensitized, can I even dare take anything that will make it spin even more out of control? I'm still on Xanax, bloodpressure, thyroid and a hormone. I checked the drug interaction and none of them seem to interact with mebendazole.

 

Do I try the natural route? I read about it: cold pressed virgin coconut oil, grated coconut, garlic, etc. There are several suggestions.

 

Do I go to the homeopath? 

 

Is the idea that I go to my doctor and have a stool specimen tested, blood work done? I try to read up on things, but with my mind so unwell, I get confused. I'll appreciate your advice. 

 

desertchild

[desertchild]

Hi everyone

 

I had my 4th acupuncture treatment yesterday, done by someone from Germany. We unfortunately have a communication problem, because she does not speak English well at all and my German is basic. So I've tried to explain protracted withdrawal, but much was not communicated.

The first time I went I did feel more relaxed for a few hours afterwards, and had less anxiety. She also does a gentle acupressure technique, which feels good, but after she's worked on my feet and lower legs it felt as if everything starts to tingle.

The last 2 times she used moxa, and yesterday she added points on my forearm for depression. After I left yesterday I gradually experienced an increase in anxiety, which grew in intensity during the night and today it is awful. 

Could this be a result of the moxa or too frequent treatments? I went 1x/week and this week she wanted to see me 3x, I think I'll cancel tomorrow. Can acupuncture do this?

 

thanks for your help

 

desertchild

[Shep]

Hi, DC.

 

I've never had acupuncture treatment, but this is a thread that you may find informative:

 

http://survivingantidepressants.org/index.php?/topic/136-acupuncture/

 

You mentioned she added points on your forearm for depression. If your acupuncturist is trying to "stimulate" in order to relieve depressive symptoms, that may cause problems and rev up symptoms. Everything should be calming at this stage. Sleep is important in the phase you're in.

 

Hope you're feeling better soon. 

 

 

[desertchild]

I woke up yesterday with one very annoying symptom, but other than that everything was relatively calm. I sat in bed and almost could not believe it. I felt calm and so so thankful. All I could say was: 'thank you, thank you, thank you!' 

 

Our garage needed cleaning and in spite of soaring anxiety when I thought about the task, I managed to do it. I enjoyed the calmness, but it was difficult to trust it and I wrote in my journal: 'is this the stillness before the storm?'

 

Shortly before 12:30 I had some interdose withdrawal symptoms, but other than that it was ok.

 

Then, at 5:30 the symptoms gradually started to come back and then deteriorated rapidly into chaos. It was another sleepless night and this morning I feel so depressed and my mind is blank and the day ahead of me colorless and bleak. 

 

I got out of bed and all I could say to myself is 'moment by moment' ; put on your clothes, brush your teeth, wash your face, moment by moment, go feed the dogs, make a scramble egg, moment by moment, moment by moment...ride the wave, ride the wave

 

A few hours of a window. I know they say enjoy it, but do not attach to it. It gave hope, and now the curtain has been drawn again.

[Altostrata]

desertchild, this is a good sign. I would be very regular with your dosing, don't change alprazolam right now.

[JanCarol]

Hey DesertChild - 

 

I just wanted to say how much I admire your warrior attitude, and your persistence and patience with yourself.

 

I know it has been really hard, but you are working really hard to get through this.  Time is the greatest healer, and it becomes severely distorted when the suffering is so great.

 

But you have a winning attitude, a determination to get through this which is a shining light to us all.

 

I hope you are feeling better, soon.