SandCastle: missed the tapering boat

[SandCastle]

Is it possible for cough medicine to set off a wave? I had to take it for about 5 days straight, and now I’m experiencing issues I haven’t had since early in withdrawal (brain zaps, urgency to pee, etc). I’ve been off it for two days and am still having trouble.

[ChessieCat]

Q:  What is in the cough medicine?

 

I think that most cough medicines would have an ingredient in them that might cause issues.

 

You could do a search for the brand/type and/or ingredients to see what others have posted.

 

Also consider that if you had an infection/virus which caused the cough, then your body has been fighting that.  Many members have reported experiencing worsened symptoms when they have been sick.

[HealthHopeHappiness]

On 11/24/2021 at 3:46 PM, SandCastle said:

Is it possible for cough medicine to set off a wave? I had to take it for about 5 days straight, and now I’m experiencing issues I haven’t had since early in withdrawal (brain zaps, urgency to pee, etc). I’ve been off it for two days and am still having trouble.

So sorry you are in a wave. How had you been before taking the cough medicine? I’m no expert but I know our nervous systems are sensitive to even the smallest things e.g. food, drinks, supplements, etc during WD so I’d imagine cough medicine could set off a wave. Really hope it passes for you soon. 💕

[SandCastle]

Hi @ChessieCat I went back and forth between delsym and robitussin. I have also wondered if it had to do with the virus because this one was pretty bad, with chills, sweating, fatigue, lots of coughing (not covid or the flu though). I’m coming to the end of it and still dealing with symptoms ☹️. I hope that ends with the virus and that the cough medicine didn’t set off a long wave.

[SandCastle]

Hi @HealthHopeHappiness before I caught this virus/cold, I was in a wave anyway, but I got to the point where I considered that wave “normal” since the symptoms were all the same. Now the muscle twitching is suddenly gone and has been replaced with needing to go to the bathroom often, major acid reflux, back pain (that was gone for a while) and cramps. I hate that I finally get rid of one symptom, just for it to be replaced with a bunch of different ones…

[arbor]

Good to hear from you--

Hope you feel better soon @SandCastle🌻☘️❤️

Arbor

[SandCastle]

Thanks @arbor. It’s funny because just like last year, the muscle twitching stopped around the end of November. I find that so strange. Now if I could only get rid of these other problems…

[arbor]

Hi @SandCastle

Good news about the muscle twitching.  I wonder if there will be a change in the spring.  Hopefully not!  And YES to

3 hours ago, SandCastle said:

Now if I could only get rid of these other problems…

!!!!!

It may take awhile, but I know you'll get there--free of w/d 🙏

Arbor

[HealthHopeHappiness]

Hi @SandCastlehow has your Christmas been? How are you doing? How are the back pain and cramps? Urinary symptoms eased any? Really hope so. 💕

[SandCastle]

Hi @HealthHopeHappinessI have had major easing of some specific symptoms. Urinary symptoms only happen in the morning now. I had a few days around Christmas where I had windows of cramp-free time all morning until late afternoon. At the moment it’s kind of bad again. Same with the back pain, it’s kind of terrible right now, and in my head it feels like it’s the worst it’s ever been, but I remember a time when I couldn’t bend over to pick up my kids. Therefore I know it’s been worse. The one thing that has been totally gone, and I’m so grateful for this, is the acid reflux. I was at the point where I was going to break down and make a doctor’s appointment because I was even waking up with it, before I had a bite to eat or drink. I know I would probably have had to go through hell - endoscopy and the whole bit - but about three weeks ago it just went away. Even eating something acidic doesn’t set it off (I feel like I’m jinxing myself now). This has helped a lot and made me more optimistic with my other symptoms. The twitching did come back for about three days, where it was like fireworks all over my body, but I’m out of that now. Hoping this year is much better!

[HealthHopeHappiness]

Hi @SandCastleI am sorry I am only replying to you now. It sounds like things have been up and down for you which seems to be the case with the rollercoaster of WD. I’m so glad your acid reflux has settled, that is such an awful symptom to live with. You sound like you are good at rationalising when a symptom flares up which is great and hopefully helps keep you calm.
 

How have the first couple of weeks of January been for you? Keeping everything crossed that you see continued improvements and you are well on your way to recovery this year. 💕 

[HealthHopeHappiness]

Just wondering how you are doing @SandCastle? 💕

[SandCastle]

Hi @HealthHopeHappiness I meant to respond earlier but I didn’t want to keep sounding like a broken record. I’m still going through a wave that seems to be getting worse. Over the last few days the twitching has returned, not as bad as before, but on top of that my lips and one of my thumbs are moving on their own. It seems to be under control now but it will just start out of nowhere. My memory has been terrible lately, to the point of not being able to remember the last names of some of the people I work with regularly. I’m still having digestive issues that are pretty strong, but thankfully the heartburn/AR is still gone most of the time. The urinary symptoms seem to have completely resolved too, which is great. Unfortunately the cramps in my legs, feet and arms have returned full force and are relentless. I’m also getting hit pretty hard with jaw pain, a pain in the side of my head, and my usual back and hip pain. I’ve been accepting of some symptoms and nervous about others. I’m hoping for a break soon but not sure what I can do to help that along. Thank you for reaching out 💕

[HealthHopeHappiness]

5 hours ago, SandCastle said:

Hi @HealthHopeHappiness I meant to respond earlier but I didn’t want to keep sounding like a broken record. I’m still going through a wave that seems to be getting worse. Over the last few days the twitching has returned, not as bad as before, but on top of that my lips and one of my thumbs are moving on their own. It seems to be under control now but it will just start out of nowhere. My memory has been terrible lately, to the point of not being able to remember the last names of some of the people I work with regularly. I’m still having digestive issues that are pretty strong, but thankfully the heartburn/AR is still gone most of the time. The urinary symptoms seem to have completely resolved too, which is great. Unfortunately the cramps in my legs, feet and arms have returned full force and are relentless. I’m also getting hit pretty hard with jaw pain, a pain in the side of my head, and my usual back and hip pain. I’ve been accepting of some symptoms and nervous about others. I’m hoping for a break soon but not sure what I can do to help that along. Thank you for reaching out 💕

Oh @SandCastleI am really sorry to hear you are going through a wave and have had the return of some old symptoms. It sounds like you have a lot of different and uncomfortable symptoms to deal with all at once. Can you pinpoint anything that could have set this wave off? Have you had any vaccines or other medications? I remember you saying before how mild illness can also result in an increase in your symptoms, have you or your children been unwell? Whatever the cause is, I really hope this wave begins to settle soon and things stabilise for you. I’ve read a lot of threads recently where people say they have one of their worst waves just before they start to really heal. I will keep everything crossed that this is what is happening in your case. 💕 

[SandCastle]

@HealthHopeHappiness Yes, I have had several things come up that could have set this off. I got the booster and flu shot on the same day at the end of November. I had a bad cough and had to take cough medicine for about a week (this happened once in November and once in December). My kids are in daycare and are bringing home a new virus it seems like twice a month. I took Aleve a couple times for headaches, and I’m not sure if that’s one of the medications that can set off symptoms. My diet has been terrible and with the cold weather, I haven’t really been getting out and taking walks. I think I’ve taken one 30 minute walk in all of January. Work has not been much of a source of stress lately, although I have noticed that some symptoms spike when I pull into the parking lot! I’m planning to make February a time to eat a little healthier and walk more and see if that makes a difference. The problem is that I did that in September/October and was pretty committed, and I didn’t really notice things getting better. Oh, that’s the other thing. I lost about twelve pounds between September and October and have since gained that back, so maybe the weight loss and gain have caused an issue too. I’ve had minor improvements so it hasn’t been all downhill, but you know how it is, certain debilitating symptoms make things seem much worse.

[arbor]

Dear @HealthHopeHappinessand @SandCastle.  I keep thinking about how you both are going through the terrible w/d phases while also raising children.  Talk about strength--

Sending you both congratulations on every tiny bit of recovery, and looking forward to it being full recovery.🙏

Arbor💗

[SandCastle]

Thanks @arbor that means a lot. Hoping for this to be a distant memory for you as soon as possible also 🧡

[HealthHopeHappiness]

22 hours ago, arbor said:

Dear @HealthHopeHappinessand @SandCastle.  I keep thinking about how you both are going through the terrible w/d phases while also raising children.  Talk about strength--

Sending you both congratulations on every tiny bit of recovery, and looking forward to it being full recovery.🙏

Arbor💗

Thank you @arborthat is really kind of you to say. 💕

[HealthHopeHappiness]

Hey @SandCastleyou popped into my head tonight and I wondered how you are doing? Hope you have some relief from the cramps, etc. 💕 

[SandCastle]

Hi @HealthHopeHappiness Still having lots of problems with cramps and other symptoms. Even though it’s happening daily several times per day, I have had a couple days with lower frequency. I just started vitamin D yesterday, so maybe that will help. I have been avoiding all supplements for about 18 months, but at this point they really can’t make things worse it seems.

[SandCastle]

I just wanted to add here that yesterday was probably the best day I’ve had in 8 months or so. I had almost no symptoms, maybe 2 minutes of pelvic pain and less than 10 small muscle twitches all day. ZERO muscles moved on their own! I’m sure I never thought I’d be celebrating something like that. I also did not have my normal burning pain that moves throughout my body. Today of course is a nightmare again, so I don’t have any fear of jinxing things since the moment has passed. This makes me feel like there will be better days to come. In 3 months I will be closing in on 2 years since I CT’d. I was really hoping to see more consistent improvements at this point, but I’ll take what I can get!

[ChessieCat]

It's good to here that you had a very low symptom day.

 

I suggest that you bookmark that post so that you can refer back to it and remind yourself about it.

[arbor]

@SandCastleI'm so very happy to read that you had a good day.  Thank you for sharing it.  It helps to be assured that your body and mind do still retain the ability to free you of the symptoms.  Hang in there!!!!!!

Arbor

[HealthHopeHappiness]

On 2/16/2022 at 5:30 PM, SandCastle said:

I just wanted to add here that yesterday was probably the best day I’ve had in 8 months or so. I had almost no symptoms, maybe 2 minutes of pelvic pain and less than 10 small muscle twitches all day. ZERO muscles moved on their own! I’m sure I never thought I’d be celebrating something like that. I also did not have my normal burning pain that moves throughout my body. Today of course is a nightmare again, so I don’t have any fear of jinxing things since the moment has passed. This makes me feel like there will be better days to come. In 3 months I will be closing in on 2 years since I CT’d. I was really hoping to see more consistent improvements at this point, but I’ll take what I can get!

Well done for recognising and documenting a better day. When things are hard, it’s difficult to ever remember easier days have existed. I am hopeful that you will begin to have more of these days. 💕

[HealthHopeHappiness]

How are things @SandCastle💕

[SandCastle]

Hi @HealthHopeHappiness I have been doing pretty much the same lately. Not really any improvements but not getting worse either. I’m looking forward to a vacation in a few months and hope that will help some. In about 2.5 months I’ll have hit the two year mark for withdrawal. I guess with the way things have been going, I don’t expect to see a ton of difference by that point. I will say I’m doing much better than the beginning of withdrawal, but I’ve been in a constant wave for almost a year now and am sort of losing hope as far as getting better at the moment.

[Furlow]

Hello SandCastle, I truly do feel for you. As you can see from my profile, my story is very similar to yours. At the 2.5 year mark of my recovery I stumbled upon the benefits of high doses of D3/K2. This was a good minimal step for me in the right direction. Not long after I stumbled upon the benefits of a peptide called BPC 157. This has been a complete game changer for me in my recovery. I know that they don't recommend supplements on here, but I was stuck without making much of any progress in 2.5 years and it has given me my life back. I recommend doing some research yourself. Below is a short list of the things this peptide heals. Also, there are no side effects, as it is derived from human gastric juice which your body uses to heal itself. Once the injury is healed you can stop taking it. 

 

Tendon-to-bone healing

Healing of damaged ligaments

Muscles sprains, tears, and damage - it has completely reversed systemic corticosteroid-impaired muscle healing

Skin burns

Repair of bone fractures

Brain Repair (e.g. following a TBI/CVA)

Protects organs and to prevent ulcers of the stomach

it relieves inflammation

Promotes outgrowth of tendon fibroblasts

Improves digestive function

Protects and heals inflamed intestinal epithelium (leaky gut)

Improves inflammatory bowel disease

Protects liver from toxic insults (alcohol, antibiotics, etc.)

It heals soft tissue

 

My brain has fully recovered and now my back and left hip is in the midst of repair as I can feel tenderness from the fibroblasts that are occurring as the areas are tender. I know that this is the case because I am now able to do some pretty strenuous exercises and I'm building a lot of stability and muscle. Just a little background...I was pretty much incapacitated for 2.5 years. I spent most of this time lying down. The BPC clearly is what turned things around for me. Do your own research and see, as it helps your body repair itself. The internet is a bit like the Wild West, therefore if you are interested and need some suggestions on where to get it let me know. 

[HealthHopeHappiness]

On 3/14/2022 at 6:58 PM, SandCastle said:

Hi @HealthHopeHappiness I have been doing pretty much the same lately. Not really any improvements but not getting worse either. I’m looking forward to a vacation in a few months and hope that will help some. In about 2.5 months I’ll have hit the two year mark for withdrawal. I guess with the way things have been going, I don’t expect to see a ton of difference by that point. I will say I’m doing much better than the beginning of withdrawal, but I’ve been in a constant wave for almost a year now and am sort of losing hope as far as getting better at the moment.

Hi @SandCastlebeing in a constant wave for almost a year it’s no wonder you feel hopeless. It’s positive you can see that you’re doing better than the start of w/d, but it’s still a horrible situation to be in. I’m so sorry. I hope your vacation helps you relax and you can enjoy some time with your family. 
 

I find it so interesting how similar our w/d journey is. I have also been in a permanent wave for more or less the full 16 months I’ve been off the medication, aside from the odd days here and there where things aren’t quite so unbearable. It seems the windows and waves pattern for us is a bit different, I wonder if it’s because we had immediate adverse reactions. 
 

I keep hoping each day that I feel so terrible because I’m reaching the ‘peak’ of this recovery process and then I’ll be at the finishing line. I hope this for you too. 💕

[HealthHopeHappiness]

Hi @SandCastlethanks for the comment on my thread. How are you doing? I’m hoping you have had some relief, even slightly. 💕

[SandCastle]

Hi @HealthHopeHappiness I had a little break where I didn’t notice many symptoms for a few days and I felt like I was taking a turn. I decided to use that opportunity to try to become more active and get some strength and energy back, so I started walking 3 miles per day out the gate. This was a terrible decision, I think, because it really amped up my muscular and pain symptoms. I’ve had intense muscle cramps at night while lying down, a lot of twitching in various parts of my body, neck pain, shoulder pain, back pain, jaw pain, all over joint pain, pelvic pain. Some of the pain may be from overdoing it after being sedentary so long, but the twitching and resting muscle cramps are definitely withdrawal for me. I’ve also had adrenaline rushes every morning, and that’s a withdrawal symptom. I did this for a week, and this week I’m cutting back to 1.5 miles per day to see if that helps. It’s not debilitating to the point I can’t do anything, but just existing right now is painful. I really thought some exercise would help improve my withdrawal situation but I started off too strong and it seems to have backfired. Thanks for keeping up with me. It’s always nice to have someone checking in.

[HealthHopeHappiness]

1 hour ago, SandCastle said:

Hi @HealthHopeHappiness I had a little break where I didn’t notice many symptoms for a few days and I felt like I was taking a turn. I decided to use that opportunity to try to become more active and get some strength and energy back, so I started walking 3 miles per day out the gate. This was a terrible decision, I think, because it really amped up my muscular and pain symptoms. I’ve had intense muscle cramps at night while lying down, a lot of twitching in various parts of my body, neck pain, shoulder pain, back pain, jaw pain, all over joint pain, pelvic pain. Some of the pain may be from overdoing it after being sedentary so long, but the twitching and resting muscle cramps are definitely withdrawal for me. I’ve also had adrenaline rushes every morning, and that’s a withdrawal symptom. I did this for a week, and this week I’m cutting back to 1.5 miles per day to see if that helps. It’s not debilitating to the point I can’t do anything, but just existing right now is painful. I really thought some exercise would help improve my withdrawal situation but I started off too strong and it seems to have backfired. Thanks for keeping up with me. It’s always nice to have someone checking in.

Oh @SandCastlehow utterly rubbish when you try to build up your strength and fitness and you end up feeling worse for it. Seems very unfair somehow. I hope the reduction to 1.5 miles sees an improvement in your withdrawal symptoms. You must be approaching the 2 year mark? I’ve read so many stories of people saying things improved for them at that point. I’m holding out hope for you. 💕

[SandCastle]

Hi @HealthHopeHappiness I will be at the two year mark (of quitting Sertraline CT) around the end of May. Thank you for your well-wishes; I’m hoping I’ll see more improvement by then too!! Last week when I reduced my walking to 1.5 miles per day, I didn’t see any improvement at all. This week, I’ve been doing 1.5 miles about every other day, and I’ve actually been feeling a little better. I wouldn’t call it a huge improvement, but symptoms are duller than they were the last few weeks. I have noticed some increased dizziness and eye-darting, but everything else has improved some. I’ll probably stick with this routine for a while and see if things continue to die down. I also want to start eating more magnesium-rich foods, so maybe that will help some too.

[HealthHopeHappiness]

23 hours ago, SandCastle said:

Hi @HealthHopeHappiness I will be at the two year mark (of quitting Sertraline CT) around the end of May. Thank you for your well-wishes; I’m hoping I’ll see more improvement by then too!! Last week when I reduced my walking to 1.5 miles per day, I didn’t see any improvement at all. This week, I’ve been doing 1.5 miles about every other day, and I’ve actually been feeling a little better. I wouldn’t call it a huge improvement, but symptoms are duller than they were the last few weeks. I have noticed some increased dizziness and eye-darting, but everything else has improved some. I’ll probably stick with this routine for a while and see if things continue to die down. I also want to start eating more magnesium-rich foods, so maybe that will help some too.

Interested to hear how it goes increasing your intake of magnesium-rich food. Hopefully you feel the benefit of it. Im yet to make my diet change 🙈 I started it on day 1 of covid, lasted a day, and then became too unwell and resorted to old bad habits. I’m currently off for Spring Break and planning on making changes when I return to work. No excuses! 
 

Pleased to hear you’ve noticed even a little improvement in symptoms, long may this continue. 💕

[SandCastle]

Hi @Furlow I just realized you responded on here. Thanks so much for your support! I will have to look into BPC since I’ve never heard of this before. I do typically avoid supplements in case they set something off, but I have a hard time believing things could get much worse at this point. I’m sorry you’ve had to go through such an extensive withdrawal period too, but it does help to know that other people suffered for so long and were still able to drastically improve years later. It gives me hope in the end!

[HealthHopeHappiness]

Hi @SandCastlebeen thinking about you and wondering how you are doing? Are you still managing your long walks? 💞

[SandCastle]

Hi @HealthHopeHappiness I’ve been doing ok. I’ve pretty much been going through a waves and windows pattern day by day. I’ve given in and scheduled a pelvic exam because I’ve been having what feels like menstrual cramps between periods (not just right before like usual), and I’m not sure if this is related to withdrawal. It seems like I had this feeling early on, but it’s really hard to remember now that I’m two years in. So that has me worked up some. Same things are happening with all my other neurological symptoms - not having them constantly, but off and on will get twitching, muscle cramps and odd pains around my body. The worst right now is the dizziness, adrenaline rushes and the nightmares. My sleep has been fine, which I’m really happy about, but the dizziness is worse than it used to be, and the adrenaline rushes can last a long time. I was walking toward the exit at a grocery store a few days ago and the whole room just started spinning and I couldn’t focus on any one point. Really scary! Nightmares aren’t any worse than they used to be, I just don’t like that they’re back. I am like you in the way that allergy season can really enhance my symptoms, and this year is no exception. The season seems like it’s coming to an end, so I’m hoping that means symptoms will start to improve.