Cherry47

[Cherry47]

I have had CFS for 32 years. Put on Zoloft 100 mg 14 years ago because 'it seems to help but nobody really knows why'. Certainly some help for the first ten years then seemed to have trouble tolerating other meds eg cholesterol meds, supplements, magnesium, sleeping pills albeit at low doses. Through process of elimination got down to the Zoloft, so stopped over a year although the last 50 to zero too quick I now realise. My introduction to hell! After 15 weeks, seemed to get a bit better but then relapsed. Around the 15 week mark out of sheer desperation I took half a sleeping pill (temazapan), great the next day, then slowly slid back. I have also taken some Q10 for four weeks for energy. Is that building up? Was it the temazapan? Is there any rhyme or reason to this? So hard to work out. Only medical advice different drugs and more of them! Has anyone with CFS been on this same roller coaster?

Edited July 19, 2016 by scallywag
tags added

[Fresh]

Hi Cherry ,  welcome to the site.

 

Lots of us who've been on ad's for many years have had similar experiences . . . you finally stop the meds , seem to be

going okay , then between 3 and 9 months off get hit with new , more disturbing symptoms. "Protracted Withdrawal Syndrome".

I suspect you might have continued to deteriorate anyway , perhaps the temazepam just rocked the boat that bit too much.

Or maybe it's a red herring.

 

You may find relief by reinstating a small amount of zoloft . . . see the thread on reinstating in Symptoms and Self Care.

 

Good to have you on board ,  Fresh

(waving to you from Sydney)

[Petunia]

Welcome Cherry47,

 

I'm sorry to hear about everything you've been through.  I was on SSRIs for a similar amount of time and am also in protracted withdrawal from coming off them too fast.

 

When did you stop taking the zoloft?  What dose did you stop from?

 

You will find a lot of friendly help and support here, I'm glad you found us.

 

Petunia.

[luv2knit]

Cherry, welcome! Sadly, yes! I was put on Zoloft 20 years ago for CFS. Seemed to help for a while. Not really sure when it stopped working. My daughter sustained neurological damage from an antibiotic, and I decided I wanted to be off all the drugs I possibly could. Got off my bp meds with supplements. Had not been told anything about Zoloft, though, or that I should taper. I failed to do the research. I only knew that I was irritable if I missed a few days, so I "tapered" 100 mg. in 6 weeks--yeah--basically cold turkey. I am now 8 months off. Reinstatement was not an option for me, because about the time I found out it would be an option, my nervous system was too messed up to be able to tolerate anything I was not already taking.

 

Hopefully someone will come along and have more advice for you. In the 6 months I've been on here, you are the first person I've seen who was given SSRI's for CFS, like I was.

 

Good luck in your recovery!

[luv2knit]

BTW, I take Ubiquinol (the senior version of Q10), but I have been taking for about 3 years, so I don't know what the effect would be if added in withdrawal.

[Cherry47]

Many thanks for your replies - they have saved my sanity (I think). I have discovered mindfulness and do breathing meditation for 20 mins each day and have also taken up the latest craze for stress release - colouring in! Otherwise I'm sure I would have gone mad as these symptoms are just so unrelenting and horrible that you don't know whether to scream or cry!

 

Petunia, With the Zoloft, I was taking 100 mg, cut to 75 for about 4 weeks, then to 50 which I stayed on for about six months but as I was getting sicker cut to 25, went off/on for only about a week before stopping altogether. If only I knew what I know now!

 

Great to hear from you luv2knit regarding the CFS. The medicos I have dealt with over the past four months have all been rather dismissive of the CFS but as you will know it has had a profound effect on every thing I have done for over 30 years! I'm really hoping the Q10 is not to blame as it has been a great help for years, but I can't seem to tolerate anything at the moment so will have to stay off I think.

[luv2knit]

Cherry--Yes, I have had CFS for about 35 years now. My docs have for the most part believed me, because I always had physical symptoms as well--low grade fevers, swollen lymph nodes... At the time the doctor suggested Zoloft, I had quit looking for "treatments". The doctor suggested it out of the blue. Initially he did not tell me it was an antidepressant. When I looked it up and reminded him this was not depression, he told me he was aware of that, but "studies had been done", blah, blah, blah. He never gave me further information, and since then, he and three doctors after him left the clinic, and just kept writing refills and still not suggesting this was not something to stay on indefinitely. I really place no blame on my present doctor--but I also have still not told her I have discontinued. I do not want to be placed on more psych meds, and with akathisia, this would be a very distinct possibility.

 

I am very sensitive to supplements right now. I can only take what I was already taking before withdrawal. If you were already taking the Q10, I'd say there is a distinct possibility it is not causing any additional issues for you. If you have not already done so, you might try eliminating anything else, and only eliminate the Q10 as a last resort.

 

Good luck!

[luv2knit]

Just wanted to stop by and wish you well, Cherry. Hope you're hanging in there.

[Cherry47]

Thanks so much Luv2, I appreciate your thoughts - it helps to not feel so totally isolated. Have had a horrible week - just when you think it can't get any worse, it does! On top of everything else my appetite seems to have totally disappeared again and I simply cannot afford to lose any more weight, I am skin and bones as it is.

 

I have found a good psychologist who is working with me on mindfulness/meditation/CBT which I am hoping will be helpful. I am so over being house bound with my only outings being to medical appointments!!

 

My sleep patterns also seem to mimic yours. One day surely this has to be over. Sometimes I can't help but think because of my age that this is the rest of my life!

 

On that cheerful note, I must go find something to look at or read to put me in a more positive frame of mind!

[luv2knit]

I'm sorry you have had a bad week. Unfortunately, this is a very difficult journey. The last two weeks have been very bad for me, and yesterday, I felt like a yo-yo--horrible, better, bad again, and finally ended the day decently. Last night I was awake first every hour, and then every half hour... Ugh

 

Hopefully the psychologist will be of some help to you. I know what you mean about the age thing. It's been 9 months for me, and it does seem like it will be the rest of my life. That type of thinking, though, is also part of withdrawal. I keep feeling like if the akathisia would go, things would be much better. Months on end with constant akathisia is torture.

 

Hoping things get much better for you soon, or at the least, that you will find a way to cope in the meantime. You will eventually get better! It can just take longer than we would like!

[Altostrata]

Welcome, Cherry.

 

How long have you been completely off Zoloft? What are your current withdrawal symptoms?

[Cherry47]

I have been off the Zoloft for four months. At the moment I am just swamped with this pervading sickness, I guess like really bad flu or virus, weak, burning feeling but not hot, cold, appetite totally gone again. Not sleeping, sick all night as well. It is consuming me! Hard to think of anything else. Can't get relief lying down or resting. No doubt this is causing stress making things worse and on it goes. I am worried about the loss of appetite as I cannot afford to lose any more weight and am thinking I may have to reinstate or try different drug for this reason alone.

 

Thanks for your time, I would appreciate your thoughts.

[Altostrata]

Cherry, sometimes reinstating a very small amount of the drug reduces withdrawal symptoms. You would stay on it for a while to let your nervous system stabilize, then very carefully taper off. To reduce the risk of a bad reaction, you might try 1mg Zoloft.

 

See About reinstating and stabilizing to reduce withdrawal symptoms

 

Tips for tapering off Zoloft (sertraline)

[Cherry47]

Has anyone any tips/hints on how to improve appetite, maybe herbal tea or something?

[Hopefull]

Iron suppliments are supposed to be good for the appetite. Maybe try green smoothy in the morning. Spinach leaves, banana,avacado, almond or soy milk, or cow's milk. Table spoon of honey, you can also include berries. Blitz. Maybe the iron in the spinach can help increase the appetite.

[mammaP]

Cherry I moved your new topic to your original intro thread. It is one thread per person in the introductions forum to keep things in one place for continuity. 

Maybe start a topic in symptoms and self care, I can't find one there so it might help others too. 

[Petunia]

Has anyone any tips/hints on how to improve appetite, maybe herbal tea or something?

 

This topic has some ideas:

 

Appetite, Weight Loss/Weight Gain

[Petunia]

Hi Cherry,

How are you now?

[Cherry47]

Hello Petunia, thanks for asking, the short answer is not good. I have to keep reminding myself that this time last year I was hospitalized I was so sick, so I must be getting better. There have certainly been improvements along the way in lots of little ways like the appetite - I am eating well again although I can't seem to put on any weight - I am just skin and bone, I lost so much.

 

I have been off the Zoloft for one year now and I guess it's been a two steps forward, one step back kind of recovery albeit a very slow one. I am still pretty much house bound and dependant on my husband for the shopping, cooking, driving, laundry etc. I am unable to tolerate any supplements or medicines, not even a panadol.

 

Had a relapse in November which I can't seem to climb out of and just to keep things interesting I have developed osteoarthritis in my neck joints which is causing horrendous headaches and setting all the nerves to my head on fire so that I cannot put pressure anywhere on my head. This makes sleeping even more difficult! Am trying some chiro and acupuncture, but not sure if it's helping or hindering at this stage! The nerves are just so messed up from that drug!

 

I think the drug w/d, the CFS and the neck are all just feeding off each other. Quite a few of us seem to be doing it hard at the moment. I hope you start to feel a lot better soon, you do such a good job looking after everyone else.

[luv2knit]

Cherry, just stopping by to say hello... Yes, two steps forward and one step back describes it pretty well. For me, lately it's been one step forward and two (giant) steps back. Almost 18 months out for me. I agree that the combo of WD and CFS is not a good one Hope you get some relief soon!!

[Cherry47]

Oh Luv2, I don't know what to say! We must both be due for an upwards surge soon...............surely! Keep hangin' in there!

[downtongirl]

Hello Petunia, thanks for asking, the short answer is not good. I have to keep reminding myself that this time last year I was hospitalized I was so sick, so I must be getting better. There have certainly been improvements along the way in lots of little ways like the appetite - I am eating well again although I can't seem to put on any weight - I am just skin and bone, I lost so much.

 

I have been off the Zoloft for one year now and I guess it's been a two steps forward, one step back kind of recovery albeit a very slow one. I am still pretty much house bound and dependant on my husband for the shopping, cooking, driving, laundry etc. I am unable to tolerate any supplements or medicines, not even a panadol.

 

Had a relapse in November which I can't seem to climb out of and just to keep things interesting I have developed osteoarthritis in my neck joints which is causing horrendous headaches and setting all the nerves to my head on fire so that I cannot put pressure anywhere on my head. This makes sleeping even more difficult! Am trying some chiro and acupuncture, but not sure if it's helping or hindering at this stage! The nerves are just so messed up from that drug!

 

I think the drug w/d, the CFS and the neck are all just feeding off each other. Quite a few of us seem to be doing it hard at the moment. I hope you start to feel a lot better soon, you do such a good job looking after everyone else.

 

Hi Chery!  I too have osteoarthritis in my neck and just this past week have begun dealing with some sciatica.  I try to just utilize chiropractic treatments along with massages but I had to take a tylenol last night.  How are your other withdrawal symptoms?  Sorry you don't feel well...I don't either...I am considering a small reinstatement dose of prozac.  Did you ever reinstate or just pushed through the withdrawal?

[Cherry47]

Hard to describe my symptoms at this stage, I think the worst have passed, but all the others seem to have merged to cause this pervading all over sickness which is constantly there, going from bearable to unrelenting, making me unable to do anything much. This is complicated by the CFS which I have had a strong dose of for over thirty years.

 

I didn't reinstate because I knew the drug was making me sick and felt I had to get off it. It was prescribed only as a 'maybe helps CFS' and I have never had depression or the like.

 

I think the head pain from the neck is made much worse because of the state of my injured nervous system caused by the drugs and this constant trauma is causing me to be worse. I am holding out hope for the acupuncture to work given time. There are more extreme measures like Botox injections but they frighten me a bit.

 

Hope you can find some improvement soon - it is such a nightmare!

[Petunia]

It sounds like you are making some progress with recovery Cherry, although I'm sure the pain from your osteoarthritis is making this seem so much worse and not being able to take pain meds makes it even more difficult.

 

I've had to be careful with what I can take. I've found that I'm ok with small amounts of aspirin and just lately I've been able to tolerate an occasional ibuprophen. You may find that as you get better, you will be able to handle small amounts of supplements and pain relief.

 

Its good you have a caring, supportive husband to help you get through this recovery process.

 

It would be great if you would put your drug and withdrawal history in your signature. Doing this helps people understand your context, it appears below each of your posts. Here are instructions for how to do it:

 

http://survivinganti...your-signature/

[grandmaD]

Hi Cherry, Thought I'd drop by and read your journal.  Sounds very similar to my experience with the feeling heavy, weak, lethargic and slow.  That also seems to come with headaches or pressure heads.

 

Also the skin and bones bit!  I used to be 80kg and have lost 25kg and look awful in the mirror, my ribs stick out, no butt anymore (used to be big) no belly (used to be fat)! 

 

You said you are eating better now, I hope that is still the case.  Do you sleep okay?  That is my other bugbear at present along with the breathlessness and guts aches.  What other symptoms do you have now?

[ChessieCat]

Hi Cherry, how are you?

 

I saw your post in a different topic.  Thank you for updating your drug signature.

 

Have you seen this topic?  are-we-there-yet-how-long-is-withdrawal-going-to-take

 

[Altostrata]

@Cherry47, how are you?

[Cherry47]

It is almost six years since I stopped taking Zoloft.  I am pretty much completely housebound still, but I am now 72 years old and have had ME/CFS for close to 40 years.  But......... the ME/CFS is much, much worse since the trauma of drug withdrawal and I still get swamped by waves of horrible sickness (a major w/d symptom of mine) which I feel is now a permanent response to ME/CFS crashes or any sort of stressors.

 

I am unable to tolerate any meds or supplements.  An article from the CFIDS Assoc of America on the use of antidepressants to treat CFS says “some antidepressants can also affect the cytochrome P450 system, which detoxifies the liver.  If that system is blocked by the drug , other medications cannot be metabolised and build up in the body, leading to a high risk of adverse effects”.  I feel that the long term use and subsequent withdrawal of these drugs has caused this to be a permanent response as well.  Anything I try to take seems to build up in the system and makes me very sick.
 

I suffer from bouts of depression (never had before w/d) and mood swings and insomnia but have finally moved past the blame game as that doesn’t help.  Still keeping up the meditation and contact with family cheers me up,  although even that is difficult these days in a very strange world.  

If only I had known...........

[Altostrata]

I am sorry you're not feeling better, Cherry.

 

Don't worry about the P450 system, it really applies only to drugs. But it does sound like you're still hypersensitive.

 

Are you able to take Epsom salts baths? That could get some magnesium into you, which can help. How is your vitamin B12 level?

[Cherry47]

Epsom salts - no.  I don’t have a bathtub (I filled it with plants ☺️) and I do enjoy showering in the jungle.

 

So after you mentioned it, I  got some magnesium oil spray which I am going to try in small doses.  Vitamin B12 Levels always show up as normal.  I am also going to try some low dose Q10 occasionally - not being able to take that was the straw that broke the camel’s back as it was the only thing keeping me upright most of the time.  
 

Thanks for taking the time to drop by and give me a positive boost!