Sunnylight: Sharing my story

[Blossom71]

Oh Sunnylight,

 

I am sorry that you’re not feeling good. 
I am fairly new in my journey in coming off Sertraline but wanted to drop in and say that my heart goes out to you and I hope things improve for you soon x

[Greatful]

@Sunnylight

I feel for you my dear comrade in arms.  I am by no means an expert on any of this.    But my guess you are in a big wave from the added stress of the holiday's. I also have read of waves hitting out of nowhere.   You have felt better so that tell me your TBI is probably not the issue.  Can you get it checked out, maybe that would make you feel better?

 

  You describe a lot of my symptoms.  I go in and out of feeling like I have some sort of flu bug. Weak, fatigue, cold spells,  freezing muscles freezing brain.  So far no fever though. I go through spells were I pant really easy from doing anything or even just sitting on the chair.  I get over stimulated super easy from noise, commotion, sometimes I can go to a store and sometimes I just go along for the ride and sit in the car.  Even trying to hold conversations can be to stimulating.

 

You are a super strong person and you will get through this. ❤️ 

The saying around here is this will pass.  We just wish the whole thing would pass and be a distant blurry memory😖

My goodness you are working and going  through all this. 

 

[Sunnylight]

On 1/8/2022 at 10:52 PM, Greatful said:

You describe a lot of my symptoms.  I go in and out of feeling like I have some sort of flu bug. Weak, fatigue, cold spells,  freezing muscles freezing brain.  So far no fever though. I go through spells were I pant really easy from doing anything or even just sitting on the chair.  I get over stimulated super easy from noise, commotion, sometimes I can go to a store and sometimes I just go along for the ride and sit in the car.  Even trying to hold conversations can be to stimulating.

Thank you for your kind words, it is amazing you can still give even do you are going through such a hard time yourselves. Do you feel you have space for your loss and greeving over that at all?
 

Yes, I know we have a lot of symptons in commom at the moment. Do they ever lift, even a tiny a bit? Or is it just going on and on and on at the same intensity?
I am not working at the moment, I had to call in sick unfortunately. My fever has gone down which makes me feel a bit better, I am out of bed, I hope this will lead the way to improvement 🙏

Wishing you - a good as can be day - ❤️

 

[Greatful]

@Sunnylight

The symptoms are generally there all the time.  I can say that the intensity is going down.  Don't get me wrong if I get overstimulated or stress about something they fire back up.   I get some dirty windows (were I feel less intense symptoms and have a little more energy)but then then the shade comes over again and it feels like I am back to feeling like garbage.  It seems to not be sliding as far back as it was a few months ago.  I had a few clearer windows last week in the evening then the shift again and down hill from there.  I get a lot of head/brain pain/ discomfort.  The crazy thing is it moves around.  Last week it was more in the back of my brain, now it's switch back to the top and front of my brain.  

 

I think that is a good sign that your fever is going down and you are able to move around a little.  I general don't stay in bed all day but let me tell you the couch has been getting a lot of use lol.

 

Try and have a slow and easy day. Be kind to yourself❤️

[Kat66]

On 1/8/2022 at 4:56 PM, Sunnylight said:

My system is ON and ready to fight or flight. Resting has not yet make it any better yet. It is exhausting and makes me shaky. Every little move I make (walking down the stairs, doing laundry drives my heartbeat up like crazy) I have trouble falling asleep (after 1 1/2 hour) and wake up early I cannot stand any noise, it hurts in my body. Today I went to the shop to get some groceries but I couldn't handle all the people, noises, lights got a meltdown and had to go home. I am happy my partner is here to help and support me but I still feel very lonely and sad. He is also the one who gets my anger when that comes to a meltdown.

Because it is Christmis holiday I have been off from work these past weeks and the kids have been at their dads a lot. But they come back tomorrow and works starts again Monday but I don't know how I can do it.

 

I cannot remember when I felt this tensed and sensitive to stimules. Maybe it was before I was on medicatiion. But than the situation was much different, I hardly slept and was desperate. I am insecure now and have doubts but I am not desperate. I just hope that it is withdrawal because than I have some hope it will get better over time. If it is my brain injury it will stay with me, than this is it. But that would be strange because I have felt much better than this in the past months.

Would be nice to hear from others. Thinking of everybody who is dealing with this. Sending love and kindness ❤️

 

Hi my friend - just reading your update YOU'RE NOT ALONE!......you're going through something I can really relate to. The extreme sensitised response to noise, people, lights etc. The result is, like you say, a feeling of isolation and sadness, both of which are my constant companions, along with anger. And yes, our partners are on the receiving end of the rage attacks. I can't see this collection of symptoms being anything other than WD and we have to believe it will improve. At the moment I am sitting in my office at home with a lava lamp and the lights on low, with some Buddhist meditation music in the background. If I could stay in this environment permanently I would, as it's about all the stimulation I can handle!

 

Sending love and healing xx

[Sunnylight]

On 1/12/2022 at 7:14 PM, Kat66 said:

Hi my friend - just reading your update YOU'RE NOT ALONE!......you're going through something I can really relate to. The extreme sensitised response to noise, people, lights etc. The result is, like you say, a feeling of isolation and sadness, both of which are my constant companions, along with anger. And yes, our partners are on the receiving end of the rage attacks. I can't see this collection of symptoms being anything other than WD and we have to believe it will improve. At the moment I am sitting in my office at home with a lava lamp and the lights on low, with some Buddhist meditation music in the background. If I could stay in this environment permanently I would, as it's about all the stimulation I can handle!

 

Sending love and healing xx

Thank you so much @Kat66 for caring about me, thank you so much!

[Kat66]

3 hours ago, Sunnylight said:

Thank you so much @Kat66 for caring about me, thank you so much!

You're welcome! This little community is so strong and supportive, I'm so glad we've found each other xx

[Sunnylight]

7 monts off Sertraline
I thought I do an update. I have been off Sertraline now for more than 7 months after tapering down in six months, after using it for about a year and half. Unfortunately I am not feeling well. I have been in a bad flow, or wave, since Christmas. I do not have a fever daily anymore but it comes and goes now randomly. I feel exhausted, shaky, tensed, my heart is pounding and the main problem now is that my head has all these sensations, like a claw that's gripping my had, pressure in front, aches and pains and tingles. They are bad in themselves but what makes it worse that it is accompanied by an extreme sensitivy for sounds, and an overall feeling of malaise. It is hard to concentrate, my vision is blurred and I feel quickly 'full' or overwhelmed. Then my head gets even worse. Work is a struggle, I have a lot a things/ hours I have skipped. I had some cry outbursts as well. I feel like I am about on the same spot where I was in the summer.
 

What's the worse thing now mentally is that I am losing perspective and hope. I thought a lot of my situation could be the result of tapering down and quitting Sertraline. And things would slowly become better over time. I kinda had a waves and windows pattern from the summer (waves have been longer than windows). Now I am in a wave, or bad spot for more than 5 weeks and things are not getting better, they are getting worse. So actually I think this is not withdrawal but me facing the results of my brain haemorrhage (SAB) of 2018. A lot of the symptons I have match with 'non-visible- braindamage' (it is called in Dutch NAH). Especially less energy (low battery) and easily overstimulated, which results in all kinds of stuff: fatigue, brain fog, trouble concentrating, feeling sick, headaches. And that's a worse scenario than having WD because that will not get better.

 

So I lost perspective, I do not see a path anymore, something to hold on to,  and get really sad thinking it will be like this for the rest of my life.

[Blossom71]

Aaawww @Sunnylight

 

I’m so sorry you’re dealing with all that.  I can’t imagine what it’s like dealing with the aftermath of a brain haemorrhage but I do understand what it feels like to lose perspective and hope.  It’s hard.

 

You have been through so much so please be kind to yourself.

Hold onto your children, and whatever you need to go get you through x

 

[Greatful]

@Sunnylight

I can see where you would have some second thought about wd symptoms.....I know that you described my brain issues, sensitivity to stimuli,.  I know that mine are WD or adverse affect...... try and  give it some more time to see if things settle down. It could very well be WD, waves are not uncommon to happen for many months....I would have thought that if it was  the hemorrhage, you would have experienced affects from that right away?  I really don't know enough to be commenting🥴

 

I am sorry for all your pain and worry.❤️ Hang on to the hope for healing

 

 

[Sunnylight]

On 2/2/2022 at 8:07 PM, Greatful said:

It could very well be WD, waves are not uncommon to happen for many months....

Thank you @Greatful for your caring words! Do you know if it is commom that even after 7 months of quitting waves become much longer and severe. Insteds of it slowly getting better unfortunately it it getting much worse.

 

[Sunnylight]

Still no improvements here unfortunately. And I am feeling worse and worse. Working gets harder, taking care of my kids too. It is really disrupting. I am considering starting with AD again, slowly slowly via taperingstrips with minimal steps from 1/2 mg building up to a small amount, hoping to stabilise again. Hopefully the dose where my taper down went wrong (around 25mg) will be enough. I found a good pharmacy and doctor who is extremely experienced in tapering (they are the only one that make taperingsstrips in Holland) which gives me hope and confidence. All other doctors (general practitioner and rehabilitation doctor) could not help me at all. And from there, later on, try to taper down again. It is really not what I want to do but my situation is getting worse and It feels like it might bring me to a better place. From where I can take care of myself, my kids and build a future. And where I can start working on the results of my brain injury as well.

[Greatful]

@Sunnylight

All I can say is that the waves are unpredictable........Can you go on the success stories and find on that resonates with you and contact/post to that person.. There are some that are still on here and work with members.   I really wish this could be a bad, distant memory for us.

If you do decide to reinstate please contact a Moderator and get their advice.  I know they talk about a mico dose to start.  You have been off of it for so long that your old dose my be way to much...So many doctors and the medical field do not understand this and want you to taper fast to a high dose/ or go directly to a high dose.

Have you read through the http://About reinstating and stabilizing to reduce withdrawal symptoms

My heart goes out to you❤️

 

[Blossom71]

Oh I’m so sorry things aren’t improving for you.  I hope you find a path to improvement soon and hope one of the Mods can help you find the right dose to get you stabilised.

I’ll be thinking about you x

[getofflex]

My first suggestion would be to keep a daily symptom journal to see if there is anything in your daily life that could be causing trouble and destabilizing your nervous system.  On the left side record the time of day, and on the right, write down eating, sleep, symptoms, and any other pertinent activities.  Also, make notes about anything in the environment that could be affecting you. (weather, stress, changes in your routine, etc.). 

 

Recording Symptoms and Daily Activities

 

I have had waves that were caused by stormy weather, major stress, drama from negative toxic people, excessive exercise, etc.  Are you avoiding alcohol, and other mind altering substances?  Some of us are also affected by what we eat.  I have to avoid MSG and aspartame.  High sugar intake affects some people.  

 

 

4 hours ago, Greatful said:

If you do decide to reinstate please contact a Moderator and get their advice.  I know they talk about a mico dose to start.  You have been off of it for so long that your old dose my be way to much...So many doctors and the medical field do not understand this and want you to taper fast to a high dose/ or go directly to a high dose.

I agree with the above. Read carefully the link above that @Greatfulprovided for you.  If you do decide to reinstate, I would suggest that you reinstate at a very low dose, especially since you've been off for 8 months.  I would start with 1 mg Sertraline, stay on it a minimum of a week.  If you feel significantly worse, stop the reinstatement right away.  If the 1 mg is OK, then after a while you can increase the amount, in a slow, cautious, controlled manner with input from us. What we are trying to do is prevent kindling your nervous system.  Here is a link that can help you with dosing such a small amount: 

 

Tips for Dosing and Tapering Sertraline/Zoloft

[Sunnylight]

Thank you @getofflex for your information. I do not use any alcohol or MSG or aspartaan or any other altering substances. I have a reasonably steady eating pattern, and a steady life pattern as well since I had my brain injury 3,5 years ago. The recent downfall after Christmas can definitely be related to something, there was a lot going on (see my earlier post) but it is not picking up after that. And for the other waves there was no reason to find, they just came. I already use the dr Mullen sheet to keep track of my symptons and I daily rate my day and note the symptons. I can have a look at the other sheet. I haven't notice much of a link with what I do/ what's happening on a daily basis and my symptons. The only thing noticeable is that mostly the evenings are a bit better than the mornings. The difficult thing is that I have a brain injury as well and a lot of symptons can be the same. So this can also be my 'brain injury state'. I just know that I did a lot, and really a lot better when I was on Setraline. I was stable and was able to take care of my kids, work a bit and even had a bit of a social life. So maybe it is just better for me to stay on it for a while, maybe follow a brain infury programme again, and later on gradually try to taper off.

I will be reading the information again that @Greatful send (I have read it before). About getting the doses right, this pharmacy make customize taperingsstrips. Next week I have an appointment with my general practitioner, she has to write the recipe. And this week with my doctor at the rehabilitation centre for my brain injury. Still not completely sure what to do but feel like I need to something.

Thank you for listening to me!

 

[Sunnylight]

Thank you also for the link for dosing Sertraline. The advantage when you do it yourself you have it all in your own hands, it's flexible and it is cheap but it looks extremely difficult anf precise to do it for such small amounts as 1 -5 mg, especially with powder pills, and especially when tapering up and not down. My head can not really follow this, I can not see myself doing that. I don't know if there is liquid Sertraline in Holland but I will ask around. So I think ordering a tapering strip from the pharmacy is not a bad option. I do not have good experience cutting up and weighing it by myself 😉

[getofflex]

14 hours ago, Sunnylight said:

there was a lot going on (see my earlier post) but it is not picking up after that.

Could you please link me to this post?  Thanks.  

 

14 hours ago, Sunnylight said:

The only thing noticeable is that mostly the evenings are a bit better than the mornings.

This may be due to the fact that our cortisol levels are high in the morning, drop through the day, and tend to be low in the evenings.  Cortisol is a hormone that activates the nervous system, and in WD tends to cause symptoms like anxiety, restlessness, agitation, insomnia, etc.  

 

14 hours ago, Sunnylight said:

he difficult thing is that I have a brain injury as well and a lot of symptons can be the same. So this can also be my 'brain injury state'. I just know that I did a lot, and really a lot better when I was on Setraline. I was stable and was able to take care of my kids, work a bit and even had a bit of a social life. So maybe it is just better for me to stay on it for a while, maybe follow a brain infury programme again, and later on gradually try to taper off.

I totally understand this, and it sounds quite reasonable what you say here. 

 

10 hours ago, Sunnylight said:

I don't know if there is liquid Sertraline in Holland but I will ask around. So I think ordering a tapering strip from the pharmacy is not a bad option.

You can make your own liquid from the tablets.  The link about sertraline will tell you how to do this.  It will probably be less expensive than tapering strips.   

[Greatful]

@Sunnylight  Hey, how are you doing?

[Blossom71]

I was wondering the same thing @Sunnylight x