WillowRain: Had a setback and need advice! Help!

[WillowRain]

Hi!

 

i have been in Protracted Withdrawal for 2 years and 9 months and have been seeing healing and making progress until...

 

i took a half dose of a laxative Miralax and had a slight reaction but was ok and later on that night i took my magnesium glycinate/magnesium oxide and it upped my reaction greatly. I basically had incredible burning nerve pain for hours on end. 
 

the next night scared of my constipation i took 1/4 dose of the laxative and had another bad reaction. Same thing burning nerve pain all over my intestinal tract and back.  I did not take my magnesium combo that night. 
 

the next day things improved and i took all my supplements like always with no issues. 
 

the next day was good too until i took my magnesium/combo at night and had a horrible reaction. Same thing again with intense burning nerve pain all over my intestinal tract. 
 

First 24 hours after reaction:  i only took 1 probiotic and 1 digestive enzyme so things could heal without causing issues. I reacted to my glaucoma eye drops that night though with twitching/spasms in my head all night
 
First 48 hours after reaction: i took everything as normal except no magnesium and i didnt seem to have a reaction to my eye drops and at supper only had some muscle spasms but not that bad  didnt even think it was a reaction. 
 

First 72 hours after reaction:  Morning, lunch took supplements fine. Supper took digestive enzyme, fish oil, curcumin and had a reaction that lasted prob an hour, hour 15 min with bad spasms in my guts, hot flashes, tight feeling vocal cords, some slight burning nerve pain in my intestines/back. 
 

my daily regimin of supplements/medicines

i take morning dose: 1 fish oil, 1 curcumin, 1 digestive enzyme, probiotics

 

Lunch: 1 digestive enzyme

 

evening dose: 1 fish oil, 1 curcumin, 1 digestive enzyme 

 

not taking magnesium anymore at this time

 

bed time: 1 drop in each eye of my Latanoprost drops for glaucoma

 

Ive already stopped my magnesium and am afraid if i stop my fish oil and curcumin then i wont be able to tolerate my glaucoma drops at night because the night i didnt take them i had a reaction to my eye drops. 
 

i dont know what to do. I was thinking of trying to split up my curcumin and fish oil and waiting 12 hours in between each one to see if that helps. For others of you this has happened to do you think the sensitivity will go away in a few days/weeks and is it ok to keep just letting the reactions happen even though they scare me until my body accepts them again?

 

only other option is to just stop everything but my eye drops keep my glaucoma from advancing so im hesitant to just stop them. 
 

please help! I dont know what to do. Thank you!

  

[WillowRain]

Well my bad reaction to i assume fish oil continued. With vocal cord tightness and a tight spot in my neck.  My reaction started at 7 pm. At 11 pm i took 1 drop in 1 eye of my eye drops for glaucoma. It immediately made everything worse. So i guess now the fish oil and curcumin are out. Guess i need to stop my eye drops too. What do you do when you cant tolerate a needed prescription drug?

[WillowRain]

Its 2.12 am now and my reaction has become pretty horrible with the burning nerve pain going through my intestines. Im scared and just want it to stop.  

[WillowRain]

My symptoms have gotten milder as the night wore on. They were pretty intense and i feel i need to do everything i can to keep them at bay so today my plan is to eat all mild foods and not take any supplements but my digestive enzyme. I wont take my glaucoma drops either. Hoping after things calm down for a week or so maybe i can reinstate them. 

[WillowRain]

Update. Its now 2.51 pm and everything i eat burns bad. Im not eating for the rest of the day. Im holding out hope that cutting out every supplement but just food will stabilize me. 

[WillowRain]

Its now 8.03 on day 1. Had a glorious window earlier from the nerve pain and i slept. Every time i eat i get hours of pain after. Is there something special a person should eat in situations like this? Im dairy and gluten free.  Hoping tomorrow will be better.  Still in shock i did this to myself.  Only thing worse than this was my akathasia which thankfully has healed. 

[WillowRain]

Its now 10.38 am on day 2 and i can now eat with no burning. I can also tolerate my digestive enzyme and probiotics for which im so grateful. I seem to be very sensitive to sound though and any loud noise makes me dizzy. Wondering if its because i lost the anti inflammatory properties of curcumin and the fish oil. Wearing earbuds seems to alleviate it for now. I have had an ongoing issue with a knot in my neck and its linked to my eardrum on the same side. I know its been aggravated by this setback so maybe in a few days it will calm down.  Decided to update just in case someone else has a setback and sees these posts. My biggest worry has always been my sensitivities to medications and now its even worse. To my surprise though i can still tolerate my Vitamin D. I only take at most 2 63 i.u. Drops a day but still thats better than it was. Have read others reports of being able to tolerate things after a year. Hoping i can soon. Have to believe that if i stay stable and feel good most days i must be close. 
 

today im thankful for....being able to eat and that i slept 6 hours last night. 

[WillowRain]

Question. Once i feel fully heal from this setback how soon should i try to see if im still sensitive to my glaucoma drops?
 

Feeling a little scared i cannot take them. Dont want to create more issues for myself trying too soon. 

[Altostrata]

Welcome, WillowRain.

 

Good to hear you were recovering from post-acute withdrawal syndrome.

 

These symptoms started after you took Miralax? It sounds like you're sensitive to something in it and that sensitized you again to the other substances.

 

If I were you, I'd stop taking Miralax. Magnesium plus plenty of fresh water should help constipation. You may need more roughage in the form of fresh vegetables or psyllium.

 

It sounds like you need the glaucoma drops. You might ask your doctor if you can take a lower dose for a bit.

[WillowRain]

Thank you for your reply @Altostrata!  To my knowledge the glaucoma drops i am on are the weakest they make. I was supposed to switch to better eye drops 2 years ago but could not tolerate them.  
 

I found out my constipation issue was caused by removing too much fat from my diet which i did because my cholesterol came back high. Adding that back in solved everything. Unfortunately it was after the Miralax mistake.  Ive stopped all supplements but my digestive enzyme and probiotics which seem to cause no issues. 
 

so many of my symptoms are gone or lessened greatly... akathisia, histamine intolerance, daily bouts of spasms in my guts, sensitivities to light and sound, constant dry, burning eyes, sore front teeth, sensation on tongue, sweet taste, sore vocal cords, etc.  

 

My main issue now is the ongoing painful “knot” in my neck that ive had for a year, heart palpitations, buzzing in my legs, bouts of insomnia and the really annoying sensitivity to most all supplements and medications. Ive had that 2 years now. Im currently sleeping 6 hours a night.  My main worry is the medication sensitivity.  I assume when i fully heal that will clear up? Ive found some posts of others with sensitivities healing in a year, year and a half but for me its already been 2 years.  I had a big leap 3 months ago and thats when the spasms and akathisia seemed to stop.  

 

 

[SandCastle]

I just had the same problem after taking a double dose of Aleve about 6 days ago. I had been doing really well for several weeks and woke up on Christmas with a headache. I haven’t taken pain medication or even supplements since this whole ordeal started, but I didn’t want to deal with a headache all day on Christmas so I took the aleve. Since then I’ve had on and off painful spasms, bad acid reflux, joint pain and difficulty sleeping. I was about to start trying a vitamin d supplement, but after that setback I’m worried about it again. I’m hoping this doesn’t last too long, and next time I’ll just deal with the headache!

[WillowRain]

@SandCastle sorry to hear you are dealing with a setback too!

 

I just tried my baby drop of D and yup im sensitive to it again. 😔 I used to be able to tolerate 1 advil but im guessing i cant now. 

 

Today i was really weak upon waking, ate breakfast and feel a little better now.  My current symptom on day 3 is my thyroid is sore and feels full so i guess no potassium for me today.  I noticed last night everytime i eat potassium it was bothering it. Ive never been this sensitive.
 

I still have to wear my earbuds or i get sensory overload. Never had that before either. Im trying really hard not be discouraged.  

Thanks for your reply! Im sorry we both are dealing with this but its nice to know im not alone. 💕

[SandCastle]

I hope things turn around for you soon! It is definitely discouraging when you can’t take anything to help. I’ve noticed a lot of improvement over the past few months which makes me confident I’ll be completely over this at some point in the future, but now I wonder if I’ll ever be able to take a supplement or any OTC medication again!

[WillowRain]

@SandCastle thank you! Im so glad you’ve seen a lot of improvement. I had recently too. A lot of my symptoms had disappeared or lessened significantly. I have the same fear as you that i wont ever get over this sensitivity to medications/supplements. Mine was improving but at a snails pace. I have saved a few posts where people had gone from like we are right now to being able to tolerate everything again in a year. It had been 2 years already for me but looking back on it i probably slowed my recovery by not staying on my low histamine diet and i had a little setback when i had to switch fiber gummies after the ones i took for years were discontinued. So from now on im sticking to everything the same no matter how good i feel and see if that helps me heal.  I had horrible insomnia and im now thinking not sticking to a low histamine diet might have contributed to it. 
 

Day 4 im feeling much better and am sleeping 6 to 7 hours a night. Looking forward to a month from now. No major symptoms today just nerve tingles and a few light spasms here and there. My sensory overload was much better last night and i was able to go without my ear buds and was able to watch some Netflix.  Hoping to see that to continue to improve because its annoying lol. I also walked 5000 steps. I have to believe if i keep sleeping, walking and my symptoms are pretty low key it shouldn't be that long before i heal completely. Im hoping by the end of 2021. ☺️

[Altostrata]

Yes, the hypersensitivity will gradually go away, but if you take something that triggers it, it can take some weeks to go back to prior baseline.

 

You may be able to relieve the knot in your neck with acupuncture, physical therapy, chiropractic, massage, or stretching.

 

Good to hear you've had some improvement.

[WillowRain]

@Altostratathank you for your reply! Unfortunately my histamine intolerance has gotten severe. I now cant take my digestive enzyme and i have a slight reaction to my probiotics. I think i can get by with no digestive enzyme but not my probiotics. Its for GERD that ive had since i had my gallbladder out 20 years ago.  Im eating as low histamine as i know how to do. I lowered my dose of probiotics last night and ended up waking up with horrible intestinal cramps so i ended up taking it because i couldn't stand it.  It cleared up the gas in a half hour. 

 

Is there anything i can do to lessen the histamine intolerance? Im feeling really scared and desperate here. 
 

The funny thing is that i barely have any physical symptoms from this. A few nerve pain tingles and that nerve can spasm in my neck but thats basically it.  Its when i eat that things get bad. Any advice is greatly appreciated! Im on day 7 of recovery. 

 

 

[WillowRain]

Update to my previous post...well i decided i needed my digestive enzyme so i crushed a pill and weighed out 1/20 doses until i took 5 doses with no reaction. I figured 1/4 of a pill was good enough because im not eating large portions. 
 

i took the 1/4 dose with my supper with no reaction at all..what a relief!

 

I did have a reaction to my “blue” probiotic (bifido strains). Head pressure and that neck nerve spasmed. It seemed to last close to an hour which scared me. I decided tomorrow i will just dump some out and take it as a separate dose. Still getting it all just not at one time. My “pink” probiotic (lacto strains) doesn't seem to be as high in histamine and doesnt give a strong reaction. 

 

i think i have this figured out and will try it all tomorrow. As long as i can get enough of digestive enzyme and my probiotics i think i will be good. 
 

Hoping this histamine intolerance lifts soon. Ive had it throughout my healing but it was never this severe. 
 

Also my sound sensitivity has improved a lot and might be gone. I didn't have to wear my ear buds at all today. 

[Altostrata]

@WillowRain good you've found a probiotic dose you can tolerate.

 

You might find a group about histamine intolerance to be more helpful. There are several on Facebook. It's not our specialty so we may not be able to answer your questions.

[WillowRain]

Day 8 Update. Well its time to stop assaulting my head with digestive enzymes and probiotics. Ive tried everything. Digestive enzymes give me bad head pressure in the front and probiotics give me bad head pressure in the back.  I dont understand it all but score 1 for my head because i cant do it anymore. 
 

Going to stick to a low histamine, low fodmap diet to see if i can handle the gas and make it through this so i can heal. From my neck down im great. No spasms, no nerve pain, nothing.  Its just my neck and my head left at this point. 
 

Hoping and praying this goes ok. 

[peaceandlove]

On 1/5/2021 at 3:59 PM, WillowRain said:

Day 8 Update. Well its time to stop assaulting my head with digestive enzymes and probiotics. Ive tried everything. Digestive enzymes give me bad head pressure in the front and probiotics give me bad head pressure in the back.  I dont understand it all but score 1 for my head because i cant do it anymore. 
 

Going to stick to a low histamine, low fodmap diet to see if i can handle the gas and make it through this so i can heal. From my neck down im great. No spasms, no nerve pain, nothing.  Its just my neck and my head left at this point. 
 

Hoping and praying this goes ok. 

Hey how are your stomach issues doing now? I’m having the same issues. Dry retching, stomach pain, no appetite, constipation etc 

[WillowRain]

22 minutes ago, peaceandlove said:

Hey how are your stomach issues doing now? I’m having the same issues. Dry retching, stomach pain, no appetite, constipation etc 

 
 

Hi there! Well its been almost 18 months since the last post and ive been on quite a journey!  Im currently stable. I still have issues with constipation and am only eating around 8 foods. My brain doesn't like me eating and i have a lot of symptoms around eating like panic attacks/anxiety attacks.  Im incredibly sensitive to all supplements, medicines and vitamins still.  Im seeing progress but its slow.  Sorry you are going through this too! ❤️
 

[cathnz]

On 8/4/2022 at 7:28 AM, WillowRain said:

 
 

Hi there! Well its been almost 18 months since the last post and ive been on quite a journey!  Im currently stable. I still have issues with constipation and am only eating around 8 foods. My brain doesn't like me eating and i have a lot of symptoms around eating like panic attacks/anxiety attacks.  Im incredibly sensitive to all supplements, medicines and vitamins still.  Im seeing progress but its slow.  Sorry you are going through this too! ❤️
 

So gupta didn't help with this? 

[WillowRain]

38 minutes ago, cathnz said:

So gupta didn't help with this? 

Well yes and no.  I think it made me much worse at times because i had 2 setbacks within my setback and i attribute that to brain retraining. I did too much re training and because my brain is trying to keep me safe it put me in setbacks or dips as Gupta calls it.  I have recently learned after hearing Dr Neil Nathan who has helped over 100,000 people heal from chronic illnesses in his 50 year practice say on a podcast if you are incredibly sensitive to everything, and brain retraining isnt doing much then you need to add vagus nerve work to it. If the vagus nerve isnt calmed down too the brain retraining will only work to a point this is exactly what happened to me. I did have a slight bump in healing 6 months in but then at a year i had quite a big setback which im still dealing with.
 

So my advice is if you are going to start brain retraining you should only start with like 5 min a day and add one vagus nerve exercise too it. Try to start with the mildest vagus nerve exercises and see how you respond. Then if you can tolerate it, add more from there.  Slow is fast and Dr Nathan says 20 min a day of brain retraining is all you should do.   
 

i do feel that protracted withdrawal is a limbic system and or vagus nerve issue just like other chronic illnesses are.  The trauma to our system that caused the perfect storm for us was caused by withdrawal instead of a virus, tick bite, etc.  We need to teach our brains we are safe again but gently as to not cause big dips or setbacks. 
 

I dont want to just go back to who i was before this happened to me, i want more,  i want the healthy nervous system of a child.  I feel brain retraining and vagus nerve work will get me there.  
 

Im also working with a physical therapist who uses the body to send signals of safety to the brain. Ive had the most advancement with that.  Im thinking the physical work ive done probably helped relax my vagus nerve which is why i saw improvement.  Im still doing 10 to 20 min of brain retraining a day too.   Now that im better and having more windows we can see what triggers me and im still really sensitive to a lot.  
 

Everyone is different and you just have to try and see how it goes.