727 replies to this topic

[frog]

At first I wasn't taking the KSM version but now I have been taking KSM daily for just a little over a week. 

 

I'm in California

[invalidusername]

...and how long were you taking the regular root stuff before that? 

[Mxpro32]

I have been much calmer and feeling overall a lot better since I started ksm-66 Ash. Not sure if that's why, but it's nice. I've started waking up twice a night now which sucks. Last night it was 3 and 5 am.

[invalidusername]

Quite likely. KSM is correctly standardised whereas the other stuff can never be 100% proof which is why they always state between x and y.

 

Its the difference between costco vodka and vodka you buy in a russian bar, the difference between the guiness you buy in a can at the grocery store and the guiness you buy at the pub in County Atrim in Ireland.

 

Always start with the best otherwise you will only end up buying the better stuff sooner or later.

 

At the risk of sounding like Hat... as the old saying in the UK goes "you have to be rich to buy cheap".

[frog]

Reading back through my posts (kind of amusing to be honest) it looks like I started taking the non-KSM version on nov 9 and I think I was taking 800mg morning and 800 evening (really more like 6pm when I got home from work and would start feeling the evening wave of anxiety). Then on nov 24 I stopped taking it because I wanted to make sure the Ash wasn't causing any of my remaining symptoms. On the 26th the anxiety came back in hot so I took Ash (400mg) and felt a lot better but got another wave of anxiety in the evening, took more Ash and got.. zilch. I think this was also the day when the sleep problems settled in. I'm pretty sure I continued taking Ash regularly at that point and I got the new KSM version on the 29th so let's assume I started taking it then. I've been taking 1 300mg in the AM and 2 in the pm usually an hour before I plan to go to bed. Last night it ended up being more like 2.5 hours. Also the evening of the 27th was my first time splitting the dose. I took the normal 7 beads in the AM and took another 4 at pm, then 4 in the am and 3 at pm and have been on that schedule since. I don't THINK the split dose has affected my sleepbecause the weird sleep starts began the night BEFORE I started the split dose but I'm just at a loss at why the sleep suddenly got so bad/how to fix it. 

 

This is just me throwing spaghetti at the wall ,but part of me wonders if my anxiety was so bad and so constant in the beginning weeks that I was just so worn out by night time that I was able to sleep. Now that the anxiety has lessened noticeably my brain is no longer as exhausted toward the end of the day. I've had a couple better nights here and there the past 2 weeks where I've been able to actually go into deeper sleep and have dreams and sleep more hours in a row, but they've been a rarity. 

 

Or I don't know! Maybe the Ash was really helping me sleep and it just pooped out on me! Help!

[frog]

Just an update: 

I took 2 beta blockers last night, Ash, AND a benadryl to try to ensure some sleep which I haven't been getting. Well.. no dice. I slept for like 2.5 hours, woke up panicked, hot and sweating. Then tossed around the rest of the night. So frustrated.

I reached back out to the NP. 

He actually confirmed that he doesn't usually see the beta blockers help all that much with sleep in cases when the insomnia is coming from unregulated anxiety (as in my case). It's likely that the gabapentin will have a better effect on my sleep but I hadn't started it yet since I wanted to take it one thing at a time. So instead he's prescribing a baby dose of trazodone (I think that's the name he gave. I can confirm later. All these drugs sound the same out loud). He said at high doses this drug is used to treat some pretty serious mental health issues but he's giving me a very very small dose because it's clear that I'm very serotonin sensitive. Hopefully I can just take this tonight with my beta blocker and get sleep otherwise I'm going to go back to him in a couple days and he's going to just give me Ambien. 

 

Anyone have any experience with Trazodone for sleep? 

[fishinghat]

Many members have had success with trazadone helping with sleep. Trazadone is an antidepressant and also has a significant withdrawal. A very low dose should be little problem. Gabapentin would help more with sleep but it also has a withdrawal.

[frog]

I have both the Gabapentin and the Trazodone to try since I started with the beta blockers. Should I try Gaba first? Doc said 300mg of Gaba 3 times a day. Or the Traz would be 50mg i think before bed. I want whichever one is less likely to be a nightmare to get off of later to start with just in case its enough. Also should I be concerned about mixing SSRI/SNRIs? I'm only on 7 beads of cymbalta which is practically nothing but I'm wary of everything. 

[fishinghat]

I don't blame you for being wary. The gabapentin would be a better bet. I would just try 200 mg before bed to start. That was the dose I took and it worked. For anxiety though you would need the full 300 mg three times per day. Sweet dreams.

[frog]

So I was mistaken. I think the NP mentioned that he would want to go with Trazodone but because of my seeming sensitivity to serotonin he went another route. He actually gave me Seroquel. I'm so wary of yet more "off label usages" but I was also desperate for sleep so I took 25mg last night along with the beta blockers and some magnesium glycinate (per NP's suggestion). The good news is that it worked! It took longer than I expected to kick in so I will take it earlier than right before bed (10ish pm) tonight. I'm pretty sure I was still in and out by 12/12:30 when my husband came to bed because I remember waking up and seeing him in bed and being upset that it wasn't working. I think sometime after that I totally conked out though and woke up again at 6:30! For the past week, once I woke up that was the end of it. No more sleep was going to happen but I actually fell back asleep and woke up to my alarm an hour later. What a relief. I do feel pretty groggy and just kinda of lethargic. It took a long time to get ready this morning. But the NP had warned me about this. I'll still take it if it means 6+ hours of consistent sleep. 

I also woke up without the morning anxiety I had gotten so accustomed to so maybe some nights of good sleep will help knock things back into place a bit. I was definitely getting in to the cycle of getting anxious about not getting any sleep which of course meant I was too anxious to sleep, etc etc. Hopefully this will help me get some confidence back. 

I am however wary of getting too dependent on this stuff to sleep or potentially have to withdraw from it later. Does it have a withdrawal at 25mg? I was thinking I would take it this week to get more sleep and then maybe take a couple nights off? 

I also want to start the gabapentin in the next couple days

[fishinghat]

"Does it have a withdrawal at 25mg? I was thinking I would take it this week to get more sleep and then maybe take a couple nights off?"

If there is any withdrawal it should be very minimal. I think the few days on and a gew days off like you suggested would be a good idea.

Give the gabapentin a try and see how it does. Please let us know so that we can share your experiences with others down the road.

[frog]

It seems pointless to do daily updates because things are so up and down every single day but here goes: 

I took 20mg beta blockers in the evening, 400mg magnesium glycinate (per NPs suggestion), 25mg seroquel at 9pm. Was REALLY hoping for a repeat of the night prior or better. I also had little to no anxiety most of the day yesterday. I woke up with almost no anxiety, my stomach was pretty good all day. I was really surprised and confused, but pleased. 

Unfortunately did not happen again. I went to bed around 10-10:30. I was feeling kind of weird, my brain was feeling like it was relaxing but my body felt a little restless and agitated. I've read that this can be a side effect on Seroquel which makes me wary of upping the dose from 25 to 50. 

I probably fell asleep by 11 but I popped awake at 3:30am with lots of anxiety, sweating, hot, the works. No more sleeping after that. Just lying in bed with my eyes closed hoping. Still less anxiety than I had previously been having in the mornings, so I think the beta blockers are working as much as they can. I took 100mg gabapentin thinking that I'm just not going to be able to get great sleep until the anxiety is more controlled. BUT while I was on the bus to work I was googling gabapentin withdrawal and it sounds like it's just as a nasty as Cymbalta which is very concerning. People were complaining of what sounded really similar to Cymbalta withdrawal from even taking as little as 100mg a day for just a couple weeks. I've reached out to my NP to see what his thoughts are, but it seems illogical to try to cope with the rebound anxiety Cymbalta caused by taking a drug that will eventually have the exact same effect? With that said, I'm confused why gabapentin has such an effect since it's not an SSRI and isn't even intended to be a psych drug? 

[fishinghat]

Gabapentin is often used off label to treat anxiety. It is well known to have a lot of potential side effects. At 100 mg three times a day for a few months you moist certainly experience withdrawal. I would classify the symptoms as like those associated with Cymbalta but about 50% less severe. My experience in coming off it as well as others I know would indicate that a 3 month sloe wean would be appropriate. This is one of the reasons I always recommend hydroxyzine and/or clonidine as a first line treatment for anxiety. They do not have withdrawal and are not addictive. If they do fail to work one can always go to one of the other drugs which do have a withdrawal. These include things like benzos, antidepressants, gabapentin, pregabalin, and others.

[frog]

Thanks FH. I did bring up the hydroxyzine to the NP at our session and he said that gabapentin works better so I guess that's why he went with that one. I reached out to him today with my concerns after reading about the withdrawals, so maybe he'll let me try the hydroxyzine first. I agree that I'd rather try something milder first and hopefully have it work. If it fails then it fails and I'll try the other one. I think he just wanted to help me feel better faster which is understandable, but I think I'm in an ok enough state to give something a try that may not bring immediate relief. 

 

How long does it take with hydroxyzine to know if it's working or not? 

[fishinghat]

With all the experinces I have had as well as thge people I know and on this forum the only thing I can say is that all of these meds help some people and not others. No guarrentees. The hydroxyzine and clonidine have worked very well for me. Lets hope it works well for you. If he does give you ascript it should be for 25 mg 3 times during the day and 50 mg at bedtime. Any less will just not do the job during Cymbalta withdrawal. It can make some people sleepy at first so start with the 50 mg at bedtime, after a few days add 25 mg during the day and a few days more 25 mg twice during the day and so on. Sleepiness does not usually occur with the slow start up.

[frog]

The 100mg of gabapentin and the beta blockers do seem to be working so far today so that's good. I haven't been experiencing any anxiety since I got to work. It has such a short half life that I guess I'll find out in the next hour or two if it was actually doing anything. I suppose it's SOMEWHAT positive that I don't seem to need the full 300mg per dose that the NP suggested to get results but even at 300mg total per day it seems like people experience withdrawal. Yuck. 

So far I'm definitely pleased with the beta blockers though. I don't think they can fully contain the reaction when my anxiety's really bad but I was noticing yesterday that I would start feeling the rumblings of anxiety, chest tightness, heart getting louder, but instead of it ramping up, it would just fizzle out and settle down. 

 

Do beta blockers basically block your nerves from receiving those anxiety adrenaline signals? So your brain is experiencing anxiety but you're not having the physical reaction? Are beta blockers going to help prevent entering a chronic stress state due to the relentless rebound anxiety? 

[fishinghat]

"Do beta blockers basically block your nerves from receiving those anxiety adrenaline signals?"
Yes, but only the nerves in the body not in the brain.

"So your brain is experiencing anxiety but you're not having the physical reaction?"
Correct

"Are beta blockers going to help prevent entering a chronic stress state due to the relentless rebound anxiety?". No. The chronic anxiety state is a conditioned response that is developed in the amygdala and hippocampus in the brain and the beta-blocker will not effect that that but at least you get some physical relief.

[invalidusername]

Sorry for not keeping up with your thread here Frog, but it looks like Hat is on the case.

 

I will chime in shortly when I have caught up - but my noggin has almost reached its informational limited for today as had to submit my 6 monthly review documentation for this years research. Things have started to feel a tad numb from the shoulders up... o_O

[frog]

NP IUN. Understandable.

 

FH: is there any way to prevent chronic stress state from developing during this phase? just relying on additional meds?

[fishinghat]

You can't really stop a conditioned reflex from developing as long as the stress is there over a long period of time. The best that you can do is to treat the symptoms. The medicines and life style changes that we discuss on the website is just an effort to control the neurotransmitters until our body adjusts.

[frog]

I'm having hardly any anxiety at all since I started taking the beta blockers so that's why I was wondering if this could help speed up the healing process a bit. I feel a lot closer to how I felt when I was on Cymbalta in terms of anxious thoughts, which is to say that I have hardly any. I don't think Cymbalta was doing much for my anxieties since they were all very situational. I was taking the Cymbalta primarily for pain and it worked pretty darn well for that so clearly my nerve receptors are well suited to it. So I guess now the nerves are freaking out?

[fishinghat]

The receptors on your nerves are changed by the Cymbalta. Now that you are coming off the Cymbalta they are trying to adapt so I guess you could say they are freaking out.

[frog]

So I was taking Seroquel 50mg last week at night for sleep, and it's working decently well. Certainly way better than not taking it. My plan is to just take it for 3-4 nights then take a couple nights off to try to prevent developing a dependency on it. The last two nights I did not take it. The first night I took some melatonin. I think I slept a little bit here and there, mostly no sleep which I expected but at least thanks to the Propranolol I felt pretty peaceful during the night. No high anxiety feelings/sweating/heart pounding, etc. Last night I decided to take Benadryl 50 mg to see if I could get some sleep. What a mistake! It had the complete opposite effect of what I wanted. About an hour after taking it I started getting restless feelings and another hour later I got hit with a huge wave of anxiety and panic. It subsided but needless to say I couldn't sleep for the rest of the night at all with intermittent anxiety here and there. I read online that some people experience a paradoxical reaction like this with Benadryl specifically. Has anyone else had this? I took Benadryl once last week too. I don't necessarily remember having this bad of a reaction but it also didn't really work for sleep. Needless to say I will not be taking it again

[fishinghat]

Diphenhydramine should NOT be taken with hydroxyzine. Drugs.com

Moderate
diphenhydramine - Duloxetine
Applies to: diphenhydramine, Cymbalta (duloxetine)
DULoxetine may increase the blood levels and effects of diphenhydrAMINE. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications. Contact your doctor if your condition changes or you experience increased side effects.

Diphenhydramine has also been shown to inhibit the reuptake of serotonin. Diphenhydramine binds to the serotonin receptor and produces a reaction the opposite of serotonin.

Schmb - Benadryl worked on a limited basis for me, because sometimes it makes me jittery, and that only made the zaps much worse, so just use some caution in case you are sensitive to it.
FH - One caution on Benadryl. It is famous for bad reactions with other medicine so check your compatibility closely.

[frog]

I'm not taking Hydroxyzine, only the Propranolol and still the 7 beads of Cymbalta. 

[fishinghat]

Normally that wouldn't be an issue.

[invalidusername]

Whenever the wife has taken diphenhydramine (in dramamine form - but same active ingredient as Benadryl), she get crazy restlessness almost every time. First discovered when taking it in place of a sleeping pill - similar circumstances ensued...

[frog]

Yeah it seems like it's maybe not so much related to it interacting with anything I'm taking but just not working right for my particular genetic setup! Like I said I don't recall the previous time having this kind of agitation so maybe it's a one off BUT that time was also prior to me taking the beta blockers with consistency so I was more anxious/agitated overall during the night so I may just not have noticed the difference. Either way no benadryl for me! (or dramamine I guess)

[frog]

Just checking in, it's been about a week. 7 weeks total since the anxiety hit me super hard.

I just saw the NP again this morning. He said that out of everyone he's personally seen I'm definitely having the hardest time out of all of them. Which was tough to hear. He thinks another few months until I feel all the way better and of course hopefully continued progress in between. His biggest concern is that I'm not sleeping on the nights I'm taking a break from Seroquel. He personally has never had anyone get dependent on such a low dose of Seroquel but he understands why I'm wary of even the potential of getting dependent on anything given that I'm also his worst Cymbalta case so he suggested taking the Gabapentin on the nights off from Seroquel. I'm going to give that a try because last night I didn't get even a wink of sleep and that's just not going to help me progress. 

 

On the bright side I've been having several good to very good/great days in a row with additional so-so days and a couple bad days over the past 2 weeks. This week I had a work holiday event one day and an off-site the following day with my team and I even went out to do a little holiday browsing afterward. Really great! A couple weeks ago I was expecting to call off work for these days, so I'm happy with that. Unfortunately Friday soured on me and I had a good amount of anxiety for the duration of the day and then during the night while I wasn't sleeping. I'm still really struggling with coping on those bad days. I'm trying hard to accept them as waves in the ocean that will pass and give way to good days again but every time it's still really hard. 

 

NP recommended to start tapering down the Cymbalta while I have time off from work for the holidays (we have officially decided not to fly to Connecticut for Christmas. I'm just not feeling strong enough yet and hate the idea of feeling badly in someone else's home) so I will be down to 6 beads on Monday! Really excited to be on the path to being done with Cymbalta for good and hoping for very little additional withdrawal as I taper down since I'm on such a small amount as it is. Hope everyone else on the forum is doing well! 

[invalidusername]

"out of everyone he's personally seen I'm definitely having the hardest time out of all of them."

 

Well there's a bedside manner if I have ever seen one!

 

Think the choice to stay put over the break is a good one, despite having seen a few good days coming and going. The problem being is that your mood is very unpredictable at the moment and that can cause a lot of stress, particularly over the holidays. You need to be in a safe, comfortable and well-known atmosphere.