ryan1982: my journey

[ryan1982]

You are so wise, @brassmonkeyand I appreciate you very much. Means a lot. 
 

I’ll let my body heal and not try to fight it, per your advice. One last question before I do that very thing- are there any clear indicators that an updose would be beneficial or is that just all round bad idea, regardless of how long it takes me to stabilize?

 

[brassmonkey]

Updosing is generally seen as a "last resort" type of move. If a person can get away without it, all the better. It is usually done when ones symptoms are are to the point of being debilitating, can't get out of bed, wash, care for themselves, that sort of thing. If symptoms are improving, even at a slow rate then updosing is more of a step backward. Even when symptoms are really bad updosing is a gamble, it doesn't always work and can really backfire at times making things worse.

[ryan1982]

Love it- thanks again, @brassmonkey. I'd be so lost without this site and people like you who are willing to lend a hand. Thank you so much.

[ryan1982]

Just an update. Vertigo came back pretty badly the past 2 days and today was more of the splitting headache in the forehead variety. Still praying I wake up one day and it’s all gone. 

[ryan1982]

Interesting update, @brassmonkey. My wife makes shakes for us nearly every day and I peeked at the ingredients today. Do you think this could be extending my wave?  There's a lot of stuff in there, including ashwaganda.

https://res.cloudinary.com/teambeachbody/image/upload/v1564083557/Teambeachbody/shared_assets/Shop/Shakeology/Shakeology Chocolate Vegan/Benefits/Ingredients/shk-ing-choc-vgn-en-us-072519.pdf 

 

Also, I take a pretty serious probiotic that comes with a teeny tiny dosing spoon. I take some every day but definitely am not taking the same amount each day:

https://www.getsmidge.com/collections/all-products/products/sensitive-probiotic-powder

 

At this point, I'm down to a splitting frontal/top of head headache 24/7 and tinnitus. Curious if you or anyone has any experience of these things making a bad situation worse. 

[brassmonkey]

Ashwaganda is something we do not recommend, if possible it would be a good idea to leave it out of your shake. Do a site search, there is a lot of information on it.

 

We have had a number of members complain about bad reactions to probiotics, you could try cutting them out and see what happens.

[ryan1982]

Stopped the shakes and the probiotic. Eating as clean as can be. 
 

The splitting headaches, light sensitivity and tinnitus continue but I haven’t taken anything for it. 
 

I don’t have suicidal thoughts per se because I have too many people that depend on me. But I’d be lying if I said I still wanted to be here. This wave has crushed me and I don’t know when it will end. I can usually find the positive in most things but struggling now. I feel incredibly helpless.  
 

Sadly, we’re canceling our big family trip because of how I feel. 

[ryan1982]

Hey @brassmonkey- Just wanted to shoot you a note with an update and a question, if you don't mind. I'm still feeling heaviness in my head, get easily dizzy if I move too fast and tinnitus. The good news is that my gut "feels" healed and I haven't really had an anxiety of note. I'm sadly pretty much homebound and luckily I can work just fine from here.

 

Can't believe I'm in a wave for 45 days by taking ONE pill. Just boggles the brain.

 

The one thing I wanted to ask was around weighing my pills. I use the Gemini-20 scale with branded Lexapro. I calibrate the scale every couple uses to ensure it's good to go. I wanted to see if I'm possibly doing something wrong. I weigh out .025 grams each time I cut my pills (after tare'ing the little holder thing at 2.589g each time) and make a capsule. I take .025g capsules every morning at 8 AM, every evening at 8 PM. Each 20 MG Lexapro pill weighs .254g, so 1 MG would weigh .0127, so my .025g pill is equivalent to about 2 MG and I take two so I'm on about 4 MG of Lexapro.  Does that math line up?

 

Is there any reason I should be worried about getting inconsistent doses using a scale for .025g?  I've used this scale since the beginning and recently ordered (and returned) a new one to cross-reference.  I'm trying to find any hole that may be extending this wave so I appreciate any thoughts you may have!

[brassmonkey]

Yes, your math is fine. Just for your reference the .0127 is a ratio of Active Ingredient per Pill Weight reduced to 1, which we refer to as the drugs AIC (Active Ingredient Concentration). It can come in handy with a variety of calculations in the future.

 

The Gemini-20 is accurate to 0.004g so you have a ways to go before it can start causing any trouble. Trying to bounce a dose back and forth between scales to get it more accurate is a great way to make yourself craze. There is always going to be some minor fluctuation in one scale and trying to get it to agree with another is almost pointless. Trying to find a reason for an ongoing wave is almost a futile.

 

One use of the AIC is to check accuracy of a dose. If the dose weight varies by 1mg the dose  strength will vary by the AIC. So you can see that at the higher doses a variation of 1mg in the dose weight is not going to make much difference in the dose strength. When you get to the smaller doses it can make a difference, but pretty much that is relegated to the Endgame Taper. During the regular taper consistency is much more important that accuracy. Using the same equipment and process to make up the doses leads to consistency.

[ryan1982]

Thanks, @brassmonkey  

 

Great, sound advice and very much appreciate it. I’ll roll with the scale and process I already have. Trying not to fight this wave as much as I can. Have a COVID vaccine tomorrow so we’ll see what that holds!

 

Appreciate you very much, as always. 

[ryan1982]

Got a COVID vaccine (first shot)- brutal headache. Now we wait to see if it makes the wave worse. Taking Tylenol and despite making my tinnitus worse, it seems to take the edge off. 

[ryan1982]

Hey @brassmonkey! How are you, sir?

 

You mentioned that a severe adverse reaction can potentially take a long time. Are we talk 3 months? 6 months? A year?

[brassmonkey]

Regaining stability after an adverse reaction or other destabilizing event is a highly individual process. It is very hard to put a time on it. Many people will stabilize after a few months, most will stabilize between three months to a year, but there will be a very few cases that can take longer. 

[ryan1982]

Thanks, @brassmonkey

 

After being in this nightmare for 4 years and a long taper ahead, not going to lie, that’s tough to hear. Appreciate the honesty and feedback. 

[Dejavu]

@ryan1982, I hear you. You're not alone. When I reinstated after a nasty CT crash, it took me 10 months to stabilize. But, I got progressively better during that time, and I made my biggest strides in months 8-10. In the end, I think it is fair to say I was 100% stable. Unfortunately, it only took me another few months to knock myself off the wall again by cutting too much, too soon and making a dosing error (helped along by stress over Covid and the use of a steroid nasal spray). And just like that, it all caught up to me. I was devastated to discover I was right back where I started, and having only been able to cut my zoloft dose from 26.25mg to 20mg because of it. I've now been in this current wave for 7 months. I was almost stable in November and December, then came down with a severe sinus infection on New Year's Day which has put me back into the thick of it again. All I can do at this point is hope that this wave is the last stop before stability, but at the same time, be ready if it's not. Yes, it is very upsetting that it's taking this long - again. You can check out the two latest posts on my thread to see just how high my frustration and anxiety can sometimes be. But at some point, stability will happen. For both of us. And you can help yours along by keeping your situation as consistent as possible. Don't give your CNS extra work to do right now - it's already working overtime. Consistency is the fastest way - the only way, really - to achieve stability. I know you're working on splitting your doses right now, but after you get that settled, if I were you I would sit tight and make no other changes. Let it happen.

 

Just wanted to let you know you're not alone. Feel free to reach out if you need to vent. 

[ryan1982]

Hey @Dejavu- thanks so much for coming by! I needed to hear exactly what you told me. I’m so appreciative of you and this community. You’re absolutely right that we’ll get through it but man, toughest thing I’ve ever done.

 

I read your thread and you’ve been definitely through it! Praying for your healing and I’ll follow you so I can keep up with your story. 
 

God bless. 
Ryan

[Alice1]

On 2/5/2021 at 9:23 PM, brassmonkey said:

Regaining stability after an adverse reaction or other destabilizing event is a highly individual process. It is very hard to put a time on it. Many people will stabilize after a few months, most will stabilize between three months to a year, but there will be a very few cases that can take longer. 

@brassmonkey Is this valid for my destabilizing event ?  I had a kidney stone and was given pain meds, NSAIDs, and an antibiotic that threw me back to acute. I was 4.5 years out of a CT and was making very good progress.  
 

Sorry, to hijack your thread @ryan1982  I’m following you bro.  

[brassmonkey]

It doesn't really matter how the body becomes destabilized, once it has it can take some time to sort things out and calm down. Seeing that you were in a good place when the destabilizing events happened I would expect you to be on the shorter end of the recovery scale. There are a couple of things to keep in mind, going CT is extremely stressing to the body and as you are finding out it can take a very long time for things to get back to normal. Once they are there it still will take a fair amount of time for the body to rebuild it's strength and resilience. Until that strength is build backup it will leave a person vulnerable to intense setbacks.

 

People joke about kidney stones, but they can be very traumatic for the body. That trauma can leave the body in a sensitized state as can the treatments for the stone. So combine them all and it feels like you are back to square one, but there has been a huge amount of healing that has happened which makes the body better able to handle things. Again, time is the answer.

 

I tried to pass a 9mm stone several years after I reached "0". I was quite stable at the time, but it threw me into depression, anxiety and a host of other things. Things finally settled down about three months after I had it removed. I will say I did not treat myself gently during the ensuing months, which probably caused some additional problems, but there were extenuating circumstances. If you're interested I talk about it in my Tao of the Brassmonkey thread beginning in January 2019.  

[Alice1]

On 2/5/2021 at 9:23 PM, brassmonkey said:

Regaining stability after an adverse reaction or other destabilizing event is a highly individual process. It is very hard to put a time on it. Many people will stabilize after a few months, most will stabilize between three months to a year, but there will be a very few cases that can take longer. 

Thank you Tom.  I’ll thank you again with a tag on my thread.  
 

@ryan1982 Sorry for hijacking your thread Ryan.  Tom is one of the most knowledgeable people on the planet about this stuff.  When Tom said what he said about setback timelines I had to chime in.  Lol.  I don’t mean any disrespect.  If you ever want to chat hit me up.  

[ryan1982]

Not at all, @Alice1. I'm hoping you feel better soon, buddy. I'm always learning and appreciate you and @brassmonkeystopping by.

 

[ryan1982]

Quick update: I’ve been dealing with horrendous frontal headaches since mid-January and I can’t help but try and seek some medical attention to help with these. I’ve tried Tylenol and even hydrocodone/acetaminophen and neither of them touch them. Unfortunately, these headaches cause me to be extremely light sensitive and have messed up my sleep pattern pretty significantly. 
 

I don’t guess we’ll know whether these are coming from my wave as all the other symptoms have come and gone. 
 

I’m scared to try and take something but I feel like I have no choice. 

[ryan1982]

Update to my update: Doc wants to put me on a short course of prednisone and then to start back up Gabapentin if my migraines don't subside. I've read through the headache thread a few times but if anyone has any suggestions, I'd greatly appreciate it. I'm not sure I have much of a choice.  

 

[brassmonkey]

Frontal headaches are often caused by tension in the neck and shoulders. I would try heating pads and massage before adding drugs. They can also be caused by eyestrain. There is a technique called "cupping" that can be helpful, and my favorite is "sunning". With your eyes gently closed look at the sun until the "pretty colors" all dissolve into red then look away before opening your eyes. Also in the shower, let the warm water play over your eyes and forehead again until the "pretty colors" settle to a constant. I've made this a part of my nightly routine.

[quickquestion]

Hi Ryan - I am sorry to hear about what you are dealing with. Have your headaches started to improve yet?

[ryan1982]

Hey @brassmonkey- Sorry to tag you, I just know that I've gotten great advice from you in the past and hoping you'd be willing to take a couple minutes to read my update. 

 

The great news is that I restarted my taper using the BM slide, going from 4 MG of Lexapro to 3.8 MG! First cut in 3 years!

 

Now for the not-so-good news...I was diagnosed with trigeminal neuropathic pain (basically nerve damage) and the doctors wanted me to try low dose Naltrexone. And when I say low, I'm talking .125 of a starting dose. Very, very low. Naltrexone can be taken up to 40 MG for reference.

 

Of course the med didn't work and I'm pretty sure that threw me into a wave. I also had my second COVID shot right around that time. I've had unrelenting anxiety since that point and I'm losing hope.  I'm absolutely done trying any medication to treat this condition. It's either acupuncture on the low risk end or I go all in and get a nerve stimulator.

 

My question is...I cut my Lexapro on 3/31 and had the Naltrexone on 4/8. I felt fine from the dose cut and noticed immediate effects from the Naltrexone after I took it so it would lead me to believe it was that causing the issue...does that jive with your thinking? I haven't found much on COVID shots causing waves.

 

Lots of breakdowns, sensory sensitivity and emotional spirals with this one- I was able to compose myself to take my kids to Disney for a week but I'm home now and I think just absolutely worn out from the trip. Desperate to feel better and back to my baseline. I don't want to harm myself, per se, but I don't want to live like this any longer either. Part of my issue is that I have so many health issues at a relatively young age and I feel like I can never get ahead.

 

Do even teeny tiny doses like the naltrexone that I took cause prolonged waves? Is anxiety typically a main element and will it burn off first?

 

Thanks, Brass. Appreciate you so much.

 

-Ryan

[brassmonkey]

Hi Ryan-- I'm sorry to read about your wave. I looked up naltrexone and the list of side effects mentions all of the things that you write about. The treatment is referred to as LDN and has been talked about is several places around the site. Many people seem to have problems with it. Also we are starting to get reports of the COVID vaccines causing some triggering problems. 

 

I would stay away from the naltrexone and look into the nonmed treatments.  Since you've already stopped taking it your body should stabilize and settle down. But, as usual it will probably take some time.

 

Glad you were able to enjoy the Disney trip. Many years ago I helped build the original EPCOT Center. I did a lot of work on the scenes in Space Ship Earth.

[ryan1982]

Thanks, @brassmonkey. As always, I really appreciate your time and help. Amazing to hear about your work on Epcot. So cool. I will say Disney is about the last place you want to be during a wave, haha.

 

Last question before I let healing happen- have you heard about folks having severe reactions to teeny tiny bits of meds like I did with naltrexone?

[brassmonkey]

That's why we recommend that people start very small on new drugs/supplements and work up from there. It's really hard to believe just how powerful a lot of drugs are. For people who are post "0" and still having occasional problems we sometimes recommend "rescue doses" which is just dipping a toothpick into a liquid solution and sucking off the tiny amount that sticks.

[ryan1982]

After this experience, you better believe I won’t be taking anything else! 
 

I did my first cut of .001 on 3/15, the next of .001 on 4/1 and took LDN on 4/8. Felt anxiety/wave-ish on 4/9, had COVID shot #2 on 4/11. No adverse effects from COVID shot #1. 
 

In my mind, the LDN caused the issue but what do you think about this timeline? Could the dose cut have caused a delayed reaction? Trying to make sure it wasn’t the med cut, which gives me some optimism for the future. 
 

Thanks, @brassmonkey- appreciate you so much. 

[brassmonkey]

I think it's a result of all those things compounding each other. I've been hearing questionable things about the second COVID shot and ADWD, but there isn't a lot of data. I suspect the LDN may have been a trigger, but it is so hard to tell what the cause of any wave is.

[ryan1982]

Thanks for the info, @brassmonkey. I have to say that I'm freaking out a bit that this anxiety and general feeling of being unwell is permanent. Really in a bad place.

[ryan1982]

@Carmie @Shep @ChessieCat @Altostrata
 

All of y’all have been tremendously helpful to me in the past so I’m hoping to see if you have any insight about my current situation, as I’m not doing well. Please see my last few posts for more granular detail. Essentially, I’ve had other medical issues that have caused me to experiment with other meds to manage the pain and it really has gone poorly. Here’s my timeline of events:
 

I did my first Lexapro cut of .001 on 3/15, the next of .001 on 4/1 and took low dose naltrexone (LDN) on 4/8. Felt anxiety/wave-ish on 4/9, had COVID shot #2 on 4/11. No adverse effects from COVID shot #1. 
 

I’m basically a month out from the LDN and my anxiety has been unrelenting and I have bad tinnitus. I’m definitely in an avoidance pattern, which with my kids and their activities has made life very uncomfortable. Acupuncture kind of helps but that’s it. I can’t exercise vigorously at all. Thankfully, driving has gotten a bit easier. 
 

I’m so scared that this isn’t a wave and is somehow permanent. I’ve never really had anxiety to this level- cortisol in the AM, adrenal fatigue, leg muscles tight, stomach feels like there’s butterflies. Is my pattern normal or should I be concerned? 

Thank you all so much, I couldn’t make it without this site and again, my apologies for being the squeaky wheel. 

[Altostrata]

I'm sorry, @ryan1982, you'll have to let your system settle from the naltrexone upset. It's very unlikely a covid-19 shot caused your problems. 

 

Be patient, you'll likely feel better in a few weeks. 

 

Many people find fish oil and magnesium supplements helpful, see

https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

You might try a little bit of one at a time to see how it affects you.

 

Please let us know how you're doing.

[ryan1982]

Thanks, @Altostrata. Thank you for always being there for me when I'm in a bind.

 

I find that if I stay at home and don't move around a lot, then my "off" feeling isn't nearly as bad. However, that feels self-destructive and maybe not in my best interest? It's not like I'm going out partying when I do, but there are certain responsibilities I can put off until a later date. Any thoughts on that at all? I don't want to create a negative, avoidance pattern but do tend to feel better when I stay home.

 

Lastly, did I have a severe reaction to the LDN or is this pretty normal? The anxiety and general feeling of being unwell should go away with time, right?

[Altostrata]

LDN is  neurologically active drug. If your system was sensitized by withdrawal, you might have outsized adverse reactions to anything.

 

Generally, people settle down in a waves and windows stabilization pattern from any drug upset. This applies to your mishap with LDN, too.

 

You may wish to get only gentle exercise, such as walking, until you feel more confident.

[ryan1982]

Thanks, @Altostrata- that helps a bunch. Just trying to make sure I'm not like this for months on end!