aprilshowers210: Debilitating Post Acute WD syndrome, Unable to Eat

[aprilshowers210]

Hey! So I’m about 2 years off of effexor on a fast taper (I was on max dose, went down to 0 in 4 weeks by advisement of my psychiatrist). 3 months after I suddenly had horrible debilitating symptoms, attempted to reinstate 3 times, and the 3rd time it spiraled my nervous system into the scariest most challenging physical symptoms I’ve ever had. After a few months I stabilized and was able to adjust my life as continue working without much issue, as long as I stuck to my routine.

 

About a month ago I, without warning, had a severe and sudden downturn. My symptoms are now worse and more debilitating than when I first had the worst of it 2 years ago, and I now can’t stomach food without adrenaline spikes, blips in vision, migraines, and sudden tingling/burning/numbness of my left side. Of course I need to eat, but I’m wondering if anyone else has gone through this and has a way to get through not eating without getting into serious medical danger. My doctors don’t understand very well what to do. My nervous system is more sensitive than ever, and even the slightest mistake causes intense emotional and physical pain.

 

I was on effexor for about a year before stopping, and I’m currently 26.

Edited December 30, 2019 by manymoretodays
spacing, title adaptation

[Gridley]

Welcome to SA, aprilshowers210.  I'm sorry you're having the difficult symptoms.

 

We have seen in PAWS an uptick of bad symptoms at the three month mark and at the the 18-month mark.  Your uptick at 23 months probably fits into the latter range.

 

Gastrointestinal issues are common enough in WD, as is loss of appetite.  I understand your reaction is more extreme than loss of appetite.  There really seems tone no end to the varieties that WD can take. 

 

I'm trying to think of foods that might be somewhat tolerable and also nutrient dense.  Beef bouillon, protein shake, wheatgrass juice.  Small portions.  

 

This too will pass.  

 

This is your Introduction topic, where you can ask questions and connect with other members.  Again, welcome.

[aprilshowers210]

1 minute ago, Gridley said:

Welcome to SA, aprilshowers210.  I'm sorry you're having the difficult symptoms.

 

We have seen in PAWS an uptick of bad symptoms at the three month mark and at the the 18-month mark.  Your uptick at 23 months probably fits into the latter range.

 

Gastrointestinal issues are common enough in WD, as is loss of appetite.  I understand your reaction is more extreme than loss of appetite.  There really seems tone no end to the varieties that WD can take. 

 

I'm trying to think of foods that might be somewhat tolerable and also nutrient dense.  Beef bouillon, protein shake, wheatgrass juice.  Small portions.  

 

This too will pass.  

 

This is your Introduction topic, where you can ask questions and connect with other members.  Again, welcome.

Thanks so much for your response! I’m trying to ingest calorie dense food but so far the most tolerable foods are egg, some oatmeal, and some almond milk but even then I can only have so much food at a time before I get discomfort. I’ve been mostly around a 400 calorie range each day for 3 days, but yesterday it was lower and today I’m at about 300 but still have time. My appetite was also reducing days before that, but I think I was able to sustain well enough during that time. 
 

Before this I already was unable to tolerate sugar (fruit, or added), so that also severely limits my options. I can’t even do toast without having my body start getting cold then hot then tingly. It’s weird because I’m absolutely starving all of the time, but I can’t eat enough to warrant a meal, and I’m unsure how long eating this little is sustainable. I’m hoping so much that it’ll go down as the days go by. It’s incredibly distressing and I’m very weak now.

[Gridley]

I'm glad you can eat some--eggs and oatmeal are good. Lots of little meals will boost your calorie count.  Cold, hot, tingly, all so typical of WD.

 

I know it's not so happy but -- Happy new year.  Let's hope 2020 brings some real improvements. 

[eboyd]

I cycle through the same symptoms.  It should improve as you get closer to a window.  I invested in a juicer a I juice kale, spinach, cucumber, celery, ginger (will make your tummy feel better), lemon juice and add spirulina, and matcha.  Although, I would leave out the matcha if you are super sensitive right now.  Get a good protein powder.  Ancient Nutrition is good and is paleo so you don't have to worry about dairy or gluten being an issue.  If you have a blender, try 2 scoops and adding almond milk, almond butter, maybe a small portion of a banana, chia seeds or hemp seeds, and some cinnamon.  Unfortunately, you are going to have bad symptoms at times, but you still need to give your body fuel to repair.  Bone broth is also good to sip on.  I usually stay mostly liquid during the worst of it.  I hope you feel better soon.

[aprilshowers210]

Just wanted to update that it has been over a week, and during that time I ended up in the hospital with hypoglycemia from the lack of food I was getting. I’m pushing myself to try and eat more but it’s not getting much easier. Doctors do not understand or really believe my issues, generally. Any help is appreciated.

[aprilshowers210]

4 hours ago, eboyd said:

I cycle through the same symptoms.  It should improve as you get closer to a window.  I invested in a juicer a I juice kale, spinach, cucumber, celery, ginger (will make your tummy feel better), lemon juice and add spirulina, and matcha.  Although, I would leave out the matcha if you are super sensitive right now.  Get a good protein powder.  Ancient Nutrition is good and is paleo so you don't have to worry about dairy or gluten being an issue.  If you have a blender, try 2 scoops and adding almond milk, almond butter, maybe a small portion of a banana, chia seeds or hemp seeds, and some cinnamon.  Unfortunately, you are going to have bad symptoms at times, but you still need to give your body fuel to repair.  Bone broth is also good to sip on.  I usually stay mostly liquid during the worst of it.  I hope you feel better soon.

These are good suggestions! Unfortunately I can not tolerate juice. I’ve been using a collagen powder mixed with almond milk to try and up my protein, but it’s a slow process and getting my body to cooperate is hard. I’m up about 100 calories now, and solid food is definitely my hardest. I react to the collagen (really any supplement gives me issues) but I’ve been sort of “tapering” onto the supplement best I can while still getting nutrition. I tried bone broth but it gave me a reaction. It’s so hard finding calorie dense foods I can tolerate. Thank you for the encouragement.

[eboyd]

I am so sorry you are having such horrible issues.  The digestive issues that come with withdrawal are probably the worst in my opinion.  The bloat, pain, and it seems like everything you eat is intolerable.  If eggs are tolerable then eat them.  They have protein and a very good amino profile.  They also have good amounts of fat which will help stabilize your blood sugar levels.  In the beginning I was super sensitive to anything that spiked my blood sugar levels.  I was low carb for quite awhile.  I slowly have been able to increase my carb intake.  I can eat fruit now and it no longer bothers me.  My best advice is stick to meats, healthy fats, and low glycemic foods until your symptoms improve.  The healthy fats are also higher in calories and a little bit will go a lot further than carbs and won't require you to eat as much to hit a calorie goal.  Slowly add in more carbs as tolerated.  For stomach upset ginger tea works wonders.  I hope you feel better soon.

[Guest]

On 12/30/2019 at 12:53 PM, aprilshowers210 said:

Hey! So I’m about 2 years off of effexor on a fast taper (I was on max dose, went down to 0 in 4 weeks by advisement of my psychiatrist). 3 months after I suddenly had horrible debilitating symptoms, attempted to reinstate 3 times, and the 3rd time it spiraled my nervous system into the scariest most challenging physical symptoms I’ve ever had. After a few months I stabilized and was able to adjust my life as continue working without much issue, as long as I stuck to my routine.

 

About a month ago I, without warning, had a severe and sudden downturn. My symptoms are now worse and more debilitating than when I first had the worst of it 2 years ago, and I now can’t stomach food without adrenaline spikes, blips in vision, migraines, and sudden tingling/burning/numbness of my left side. Of course I need to eat, but I’m wondering if anyone else has gone through this and has a way to get through not eating without getting into serious medical danger. My doctors don’t understand very well what to do. My nervous system is more sensitive than ever, and even the slightest mistake causes intense emotional and physical pain.

 

I was on effexor for about a year before stopping, and I’m currently 26.

Same situation here. You gotta eat , no way around it. 
 

oatmeal. Ginger. This will help mildly 

[mdwstrx]

Aprilshowers210, 

Have you thought of or tried baby food?  Some have had good luck with it.

[aprilshowers210]

1 hour ago, mdwstrx said:

Aprilshowers210, 

Have you thought of or tried baby food?  Some have had good luck with it.

I have tried some baby food but wasn’t much luck. For a few days I was up to 500-600 calories but then I had a food set me back a little yesterday. Having trouble eating today

[Katy398]

This sounds terrible after 2 years. What about high calorie shakes often given to the elderly or sick. My heart goes out to you it really does. I constantly tell myself throughout the day. 

Eventually we all heal. 

Take care Kx

[aprilshowers210]

1 hour ago, Katy398 said:

This sounds terrible after 2 years. What about high calorie shakes often given to the elderly or sick. My heart goes out to you it really does. I constantly tell myself throughout the day. 

Eventually we all heal. 

Take care Kx

Unfortunately those drinks have a lot of sugar and I can’t tolerate them. I also had an incident the other day where I had too much of my protein drink at once, and now my calories are down from 600 to 400. It’s so hard when I have to walk this fine line of getting my body nutrition and not making the problem even worse. There seems to be no opening for me.

[aprilshowers210]

Hello I’m updating because things are worse and I don’t know what else to do. Food seems to be triggering severe symptoms for me, but I have to eat. I’m up to about 600-700 calories a day now, but doctors want me up more so I can feel okay. I keep trying to push myself to eat more, but when I do I get knocked out by fatigue that feels like I’m dying. It’s like my body just can’t handle the sensitivity. We are currently looking into hospitalizing me, but I’m such a special case because clearly I have a more kindling-type withdrawal going on. I’m afraid I will never recover from this because I can’t get my body the nutrients it needs without driving my symptoms back up. I’m in a vicious cycle and I’d anyone has any advice I could really use it. They want to put me in a refeeding program to try and get me up to a medically safe amount of food. Thanks all.

[aprilshowers210]

Had another horrible setback. I tried introducing bread back into my diet and with three literal nibbles I was thrown into horrendous head throbbing and verge of throwing up nausea for 6+ hours. I am now sensitive to foods again and unable to eat much at all. How does anyone live through this?

[mdwstrx]

Hi as210. 

I'm so sorry to hear of your setback. I'm tapering the generic version of Lexapro

and have very little experience with anything else.  So I can't really offer up much with

regard to your Effexor fast taper.  However, I am praying things improve for your very soon.🙏

 

If you want to reach out to Alto or a mod, you need to do so by typing @Altostrata,

or the mods name, if you know it.  Otherwise, with the traffic on the site, they might miss your post.

I did read a post where the moderator Gridley may be on brief holiday.

Md

[aprilshowers210]

48 minutes ago, mdwstrx said:

Hi as210. 

I'm so sorry to hear of your setback. I'm tapering the generic version of Lexapro

and have very little experience with anything else.  So I can't really offer up much with

regard to your Effexor fast taper.  However, I am praying things improve for your very soon.🙏

 

If you want to reach out to Alto or a mod, you need to do so by typing @Altostrata,

or the mods name, if you know it.  Otherwise, with the traffic on the site, they might miss your post.

I did read a post where the moderator Gridley may be on brief holiday.

Md

Thank you so much! This is really helpful. I know there are other severe cases that have made it out, but my doctors are worried about my lack of food. I’m young and my calories are generally increasing, but I do fear doctors forcing me to take things that could make things worse. I’m 2 years into recovering and I just feel like if I could get through this food issue and stabilize, I could start getting healthy again. 
 

if @Altostrata or any other mod could help, I’d be so grateful. I need a lot of support because people in my life are exhausted from caring for me, and beginning to distrust that this is withdrawal. Feeling a bit insane at this point

[eboyd]

Have you thought of trying a strict paleo diet?  Also, I would recommend using some techniques to help anxiety when you eat.  I am pretty sure the fear of how I would react to foods put me into panic attacks and waves.  I hope you are able to get through this part of WD soon.  I will be praying for you.

[Altostrata]

I am sorry you're having these problems, aprilshowers.

 

Have you talked to a gastroenterologist or nutritionist? Have your doctors mentioned medical foods? Metagenics has a line. People use these when they have severe food sensitivities or gut damage. The integrative healing clinic attached to a major medical center here carries this brand, it's known to be of reliable quality. (I might try this one.)

 

This might help you while your nervous system settles down.

[aprilshowers210]

7 minutes ago, Altostrata said:

I am sorry you're having these problems, aprilshowers.

 

Have you talked to a gastroenterologist or nutritionist? Have your doctors mentioned medical foods? Metagenics has a line. People use these when they have severe food sensitivities or gut damage. The integrative healing clinic attached to a major medical center here carries this brand, it's known to be of reliable quality. (I might try this one.)

 

This might help you while your nervous system settles down.

We’re just now working on getting me to a gastro. I will definitely look into metagenics!

Unfortunately my doctor interactions all month have been a lot of “you need to eat more” and then being referred to a doctor and that doctor telling me they can’t help me. They tried to refer me to an eating disorder clinic just to help me be monitored and get my food up, but the clinic refused to see me because my fatigue prevents me from walking up their front steps (I’m finding that a lot of specialists don’t have disability accommodations interestingly enough). I’m trying to keep a close eye on vitals, but it’s hard having so few safe foods day in and day out. Doctors keep trying to pin me as having an acute mental problem, and not really paying attention to my physical symptoms.

[Guest]

1 hour ago, aprilshowers210 said:

We’re just now working on getting me to a gastro. I will definitely look into metagenics!

Unfortunately my doctor interactions all month have been a lot of “you need to eat more” and then being referred to a doctor and that doctor telling me they can’t help me. They tried to refer me to an eating disorder clinic just to help me be monitored and get my food up, but the clinic refused to see me because my fatigue prevents me from walking up their front steps (I’m finding that a lot of specialists don’t have disability accommodations interestingly enough). I’m trying to keep a close eye on vitals, but it’s hard having so few safe foods day in and day out. Doctors keep trying to pin me as having an acute mental problem, and not really paying attention to my physical symptoms.

its been 7 years for me in withdrawal and im sensitive to everything except protein, but when i ingest protein i get constipated without fiber, but with fiber i get bloated, acne, head throbbing and joint pain and gut pain. I'm basically similar situation to you, i have zero idea what to do. that metagenic link looks like you need a practitioner code for it... 

[aprilshowers210]

15 hours ago, Ryguy said:

its been 7 years for me in withdrawal and im sensitive to everything except protein, but when i ingest protein i get constipated without fiber, but with fiber i get bloated, acne, head throbbing and joint pain and gut pain. I'm basically similar situation to you, i have zero idea what to do. that metagenic link looks like you need a practitioner code for it... 

I’m sorry you’re going through it. Hopefully you’re getting calories in unlike me

[aprilshowers210]

16 hours ago, Altostrata said:

I am sorry you're having these problems, aprilshowers.

 

Have you talked to a gastroenterologist or nutritionist? Have your doctors mentioned medical foods? Metagenics has a line. People use these when they have severe food sensitivities or gut damage. The integrative healing clinic attached to a major medical center here carries this brand, it's known to be of reliable quality. (I might try this one.)

 

This might help you while your nervous system settles down.

When I eat food, even if it’s food that doesn’t give me a reaction, I can only seem to eat about 200 calories of it at a time before I get hit with this massive fatigue, and then once the fatigue lets up (about 2 hours later) I’m re-sensitized to eating in general. I don’t understand how my body can just reject eating 

[Altostrata]

You can buy Metagenics products through other e-commerce sites. Google and you shall find.

[aprilshowers210]

Hey another update!

 

I’m still struggling with food. I went to the hospital yesterday because I was getting increased nausea out of nowhere. I did a CT and got fluids. They didn’t find anything, and I’m still sensitive to food. They did however find that I have a UTI so now I’m on antibiotics, which are making me crazy nauseous and increasing my stomach sensitivity. The fluids did this as well.
 

I’ve been offered zofran by multiple doctors, but I’m unsure of how safe it is to try using while this sensitive (even after 2 years no meds). I’d love to be able to eat more and the introduction of this nausea with the antibiotics I have to take really puts me in a tight spot. I tried looking up info in the forums but most people did not seem to have a solid say on reacting to zofran or not. @Altostrata

 

Thank you for any help you can offer.

[Altostrata]

Sorry about the antibiotics. Be sure to drink lots of water to prevent UTIs.

 

I might try a low dose of Zofran in your situation. Even a week when you can get some more food in might change the dynamics a little bit.

[aprilshowers210]

6 minutes ago, Altostrata said:

Sorry about the antibiotics. Be sure to drink lots of water to prevent UTIs.

 

I might try a low dose of Zofran in your situation. Even a week when you can get some more food in might change the dynamics a little bit.

Yeah I will give it a try. I don’t know if you or anyone has any experience with this, but the nausea morphed into fatigue, which I’m finding to be a common reaction for my body lately. As soon as my nervous system decides it has enough I begin feeling like I’m going to fall asleep, and I get stuck in this almost sleep/sometimes sleeping state, and then when I wake up I’m more sensitized. I’ve only had one dose of antibiotics and I have to take this 3 times a day, and it’s already making me pass out and unable to tolerate food

[Altostrata]

I can imagine. Hang in there. If necessary, eat what appeals to you and you can get down, even if it's ice cream or buttered croissants or plain chicken broth. Just get some calories in, you can balance your diet later.

[aprilshowers210]

Everything is making my sensitivity worse. Everything. I hate to be morbid but I think this is going to kill me. The antibiotic is knocking me out and I can’t eat. I don’t see how I can recover if my stomach can’t heal as long as I need food to live. I do not see a way back to health. Every time I get ahead I get set back by something. My mom who is caring for me has given up. We’ve gone to the ER numerous times and specialists, everything is taking too long and I’m losing weight and nutrition. Unless I just sit here and try and eat through horrendous symptoms, I don’t know what else I can do. Can these symptoms kill me? Is the instant fatigue going to send me into a coma? This is a month of almost no significant improvement on a symptom that does not usually last this long with people. I don’t understand what I can do.

[aprilshowers210]

Also the issue with food isn’t in the digestion process, but from my mouth to stomach. I know almost instantly if I can “tolerate” a food. I’ve been having normal bowls movements and peeing regularly and everything but food just sets my brain on fire. Forcing food and medicine down is making me feel the burning and tingling in my head again. I have to finish these pills but I don’t know what’s going to happen to me as I essentially ignore my body to just get through this all.

[aprilshowers210]

@Altostrata

I know this is counterintuitive but I think the only way I can get through this is if I go against my body’s signals and just eat and take these pills and suffer the consequences. I don’t see any other way, and my body is reacting to all food when it’s sensitized. I think I have to just get whatever I can down and deal with it.

[Pens]

20 hours ago, aprilshowers210 said:

@Altostrata

I know this is counterintuitive but I think the only way I can get through this is if I go against my body’s signals and just eat and take these pills and suffer the consequences. I don’t see any other way, and my body is reacting to all food when it’s sensitized. I think I have to just get whatever I can down and deal with it.

Hi, Aprilshowers, I’m sensitive to a lot of food etc too. I have been experimenting to see what I’m able to eat.. Grapes, plain organic oatmeal with rice milk, baked chicken, fresh salmon baked, egg whites, sweet potato etc. whole grain toast, nothing on it, non citric fruit, water, diluted prune juice, celery and only organic. I have to stay away from, Spicy, acidic food. I’ve noticed this especially since tapering from AD. I’ve become very sensitive I don’t pretend to know what you have, this is just what is working for me oh and also I eat small amounts and often. I hesitated in sending you a message but am hoping you will improve and get you health back real soon. Hugs. 

[aprilshowers210]

1 minute ago, Pens said:

Hi, Aprilshowers, I’m sensitive to a lot of food etc too. I have been experimenting to see what I’m able to eat.. Grapes, plain organic oatmeal with rice milk, baked chicken, whole grain toast, nothing on it, non citric fruit, water, diluted prune juice, celery and only organic. I have to stay away from, Spicy, acidic food. I’ve noticed this especially since tapering from AD. I’ve become very sensitive I don’t pretend to know what you have, this is just what is working for me oh and also I eat small amounts and often. I hesitated in sending you a message but am hoping you will improve and get you health back real soon. Hugs. 

I appreciate the message! I do have foods that seem to give me less issue than others, but for some reason the most recent iteration of sensitivity affects all food when I’m sensitized. It’s like the act and process of eating is a trigger, and not the post-stomach part. At this point I’m just pushing through as the antibiotics sensitize me further. I’m finding that I get some windows where I can get food down but then after a little I’m in pain again. Trying to remind myself that this will pass. I’d be feeling a lot better about this if I wasn’t living on 700 calories a day for almost a month now. 

[Pens]

7 minutes ago, aprilshowers210 said:

I appreciate the message! I do have foods that seem to give me less issue than others, but for some reason the most recent iteration of sensitivity affects all food when I’m sensitized. It’s like the act and process of eating is a trigger, and not the post-stomach part. At this point I’m just pushing through as the antibiotics sensitize me further. I’m finding that I get some windows where I can get food down but then after a little I’m in pain again. Trying to remind myself that this will pass. I’d be feeling a lot better about this if I wasn’t living on 700 calories a day for almost a month now. 

I wish you the best, someone will discover what’s causing this for you. Will keep you in my thoughts. ❤️

[Guest]

On 1/23/2020 at 10:06 AM, aprilshowers210 said:

I appreciate the message! I do have foods that seem to give me less issue than others, but for some reason the most recent iteration of sensitivity affects all food when I’m sensitized. It’s like the act and process of eating is a trigger, and not the post-stomach part. At this point I’m just pushing through as the antibiotics sensitize me further. I’m finding that I get some windows where I can get food down but then after a little I’m in pain again. Trying to remind myself that this will pass. I’d be feeling a lot better about this if I wasn’t living on 700 calories a day for almost a month now. 

I’m like this too I can’t eat anything, I’ve been in withdrawal for 7 years and about the last three the second I eat literally anything my whole body is inflamed, joints, stomach. Skin, back, etc.... I’m starting carnivore diet this week, will let you know if any improvements 

[aprilshowers210]

My situation is desperate enough that I have to consider medical intervention to get enough food in me. I’m wondering, just because I’ve seen this on another thread I think, would starting something like lorazepam to help calm my nervous system be a possibility even with my sensitivity?
 

I am in the process of considering going back on meds, since it has been 2 years. I know it’s a toss up, but to be honest I keep seeing people say they know success stories but I can’t find any of these stories. Is there somewhere I can see some of these? I could really use all the info I can get at this time. This has been a very long, difficult decision making process. I do not take it lightly that I am considering going back on meds, but with my reduced ability to eat, multiple trips to the ER, and my extremely reduced functionality, I have to consider it. I am simply not functioning and the stress of this is becoming more than I can bear emotionally.
 

@Altostrata