Jump to content
Janie

Janie: is there any treatment for protracted withdrawal

Recommended Posts

Janie

Hello. This is my first post. I am off Effexor for 8 months and having extreme anxiety and/or depression - mixed and varied levels and some periods of feeling fine. During the bad periods I am so miserable and desperate that I feel like giving up and returning to Effexor or something else, if only to re-taper more slowly. During the good periods I feel I must stick it out and hope for healing. What treatments are any of you fellow posters getting during this protracted withdrawal? Most posts are about tapering. I have already tapered and withdrawn. What can I do to help with my continuing symptoms? I found a holistic psychiatrist and she has me on Seditol, Kavinace, and Trav-cor, omega 3's, vit D, and Ferritin, and pro-biotics. I also take lots of L-Tryptophan and it seems pregnenalone helps me. I think the Seditol is causing sleep apnea - I awake feeling like I stopped breathing. She says it's the anxiety but I did not have this until taking the Seditol. I'm still suffering a lot. What else can I try? I don't know what to do.

Share this post


Link to post
Barbarannamated

Hi Janie.

 

One of the moderators will be along to advise on the best course for you at this point. It will help them to know what dose you were on, exactly how you tapered (schedule) and other meds you are on, if any. (This post may be moved and used as your Introduction)

 

I'm sorry you're having difficulties, but glad you found this site.

 

Stay tuned.

 

Barb

Share this post


Link to post
Georgia

I developed sleep apnea after taking an SSRI and then quitting without tapering. I can't offer you any advice, but I just wanted to let you know that I have experienced something similar with sleep apnea and supplements. My sleep apnea is made worse by some supplements, including some forms of magnesium and also high-dose vitamin D. I try to stay away from anything that is a "relaxing" supplement, because it usually makes my sleep apnea worse. My physician tried to tell me it was anxiety too, until I had the sleep study which confirmed the apnea.

Share this post


Link to post
Nikki

HI Janie....

 

Protracted WD is something that most of us experience when getting off these drugs. Even people who did a slow taper will experience it.

 

It's hit-or-miss with supplements. Trust your instincts. And yes, anxiety will cause waking.

 

It can last a long time. Please don't let this frighten you. You will see improvement over time.

 

My suggestions are, exercise, (particularly water exercise) it's rejuvenating. Meditation CD's or classes, keeping yourself busy and distracted. EMDR therapy was very helpful for me.

 

I have taken Imipramine to circumvent more WD and it did help. Again this is another drug. It was okay for me. Still is.

 

Have you tried Magnesium?

 

More members will be along to help you out....

 

Hang in there.

Share this post


Link to post
Altostrata

Hi, Janie.

 

I moved your topic here.

 

The Symptoms and Self-Care forum contains suggestions for coping with protracted withdrawal symptoms.

 

As for a treatment, we're still working on that!

Share this post


Link to post
Altostrata

I found a holistic psychiatrist and she has me on Seditol, Kavinace, and Trav-cor, omega 3's, vit D, and Ferritin, and pro-biotics. I also take lots of L-Tryptophan and it seems pregnenalone helps me. I think the Seditol is causing sleep apnea - I awake feeling like I stopped breathing. She says it's the anxiety but I did not have this until taking the Seditol. I'm still suffering a lot. What else can I try? I don't know what to do.

 

Janie -- we recommend being careful with supplements, particularly those containing mixed ingredients.

 

People experiencing withdrawal symptoms are often hypersensitive to all kinds of things. We suggest trying one thing, in a low dose, at a time. If you take a bunch of supplements and have a bad reaction, you won't know which is causing the bad reaction.

 

(Supplements can also conflict with each other, and with medications.)

 

This is also true of supplements containing more than one ingredient. You won't know which ingredient is helping and which is hurting.

 

Unless you tried these supplements one at a time and know how they affect you, any one or more of them could be causing adverse reactions.

 

Did this doctor prescribe Kavinace and TravaCor after expensive neurotransmitter tests?

 

Those tests have no value. They are offered by the company, NeuroScience, that makes the supplements. Test results include recommendations for the supplements, which are quite expensive and are supposed to "balance" neurotransmitters.

 

TravaCor is nothing but a weak multivitamin.

 

The tests and supplements are popular among naturopathic doctors. Unfortunately, from what we've seen, naturopathic doctors don't know any more about withdrawal syndrome than any other doctor.

 

That said, Kavinace contains 4-amino-3-phenybutric acid, otherwise phenibut, which is a GABA-ergic (similar to benzodiazepine) popular in Russia and sold as a supplement in the US. It can incur dependency and withdrawal symptoms.

 

See many reports on the Web about phenibut abuse, dependency, and withdrawal and J Clin Psychopharmacol. 2010 Oct;30(5):648-9. doi: 10.1097/JCP.0b013e3181f057c8.

Withdrawal symptoms after Internet purchase of phenibut (β-phenyl-γ-aminobutyric acid HCl).

Magsalin RM, Khan AY.

 

I see Kavinace, TravaCor, and phenibut are now sold in many places on the Web.

Share this post


Link to post
Janie

This is Janie. I started this topic. Thank you all for the responses! I was on 75 mg effexor xr - not a big dose but had been on for 10 years or so. I thought that was a slow taper, now I know better. My doctor wanted it much faster but I knew enough to slow it some.

 

Georgia, thanks for the sleep apnea information. Your apnea was only caused by ssri withdrawal - not on anything else? Ouch! I am on 10,000 IU Vit D so maybe that is affecting me. Since I first wrote though, I've reduced the Seditol to 2 a day and try to avoid it just before bed and have not been bothered again.

 

Nikki - great advice. I do swim 3 x a week and that is my life saver!! I have Glenn Harrold relaxation cds and I like them alot. I often fall asleep even. You're right- keeping busy helps a lot to be distracted and I actually feel best when I'm at my home computer. Either I am engrossed enough, or I suspect the bright big screen I have does something to my brain. My smaller monitor at work does not have the same effect. I will have to look into EMDR therapy. Thanks for that tip!! I am also doing the deep or fast breathing to prevent escalations of anxiety instead of waiting for it to get bad before I do the breathing treatments

 

I am happy to report that the past 5 days have been so much better for me. I think the supplements have 'kicked in', or mabye I'm feeling less stress because of a small improvement in my personal life. I hope it lasts.

 

As for the supplements - Thank you Altostrata. Yes I had trepidation about taking a mixture of supplements. I am shocked at some of the cocktail products being sold on the internet. I was desperate and felt I had try the advice of this holistic psychiatrist who seems to be in the know. I suppose it is working. Aside from the sleep apnea problem which I do suspect is the Seditol, I have been more functional with only low level anxiety, depression, tingles, this week. At first I felt her supplements weren't doing anything, but after about 10-11 days I started feeling better. I have been wondering about the GABA amino acid. I did not take that on my own like I did L-Tryptophan because I think I read it reacts on the thyroid. I am hypothyroid and on med for that. To think that the Kavinace is similar to a benzo is VERY scary to me. I have recently read the benzo sites and the Ashton manual (which by the way sounds like it was written for SSRI withdrawal too!!!!!!) I will read the info you cited and try to wean off the Kavinace. Ugh!! I suppose I will go back to feeling horrible, but it that is the better way to withdraw naturally I will have to do it. If I take GABA amino acid is that different? safer??

 

I do see that Travacor has Taurine, 5-hydroxytryptophan and L-theanine. Are they okay? The tryptophan I've been taking for months now helps but.... how will I ever get off of it? As I heal will I be able to slowly reduce it?

 

Thank you. I am so glad I found this website. It is the BEST !

Share this post


Link to post
Altostrata

I'm glad you're feeling better.

 

I'm afraid I can't say much about those NeuroScience supplements. I don't recommend them. Everyone reacts differently to their components.

 

I'm glad they don't seem to be interfering with your recovery.

 

GABA supplements do not cross the blood-brain barrier. They can't help going off benzos or phenibut.

Share this post


Link to post
alexjuice

I do see that Travacor has Taurine, 5-hydroxytryptophan and L-theanine. Are they okay? The tryptophan I've been taking for months now helps but.... how will I ever get off of it? As I heal will I be able to slowly reduce it?

 

Thank you. I am so glad I found this website. It is the BEST !

 

Hi Janie,

 

I don't know anything about Travacor. But many people have noted benefit wth Taurine and theanine. 5-htp strikes me as more of a hit/miss proposition.

 

 

Several forum posters have thyroid issues as well. There are some topics on Hashimoto's thyroid disease and hypothyroidism generally.

 

I think I've benefited from monitoring my nutrition. I write down everything I eat and I found some connection with certain foods and certain symptomms. Many people, including myself, have done better after eliminating cereal grains -- eating gluten free.

 

good luck,

Alex

Share this post


Link to post
Janie

I am considering going back to an antidepressant. I've had extreme anxiety and depression during months 3 through 8 after withdrawing from 75 mg Effexor taken for over 8 years, evidently since I did not taper slowly enough. I don't feel I can go on waiting for improvement.

 

Does anyone have any recommendations on whether I should go back to a low dose of Effexor to taper again, or at this point should I go with prozac and taper from that?

 

Is there any way to know if prozac will work for me? Should I get a liver test first since I heard prozac is processed through the liver and I assume effexor is not?

 

Any suggestions on what dosage of either to try as a minimal dose that should help me after 8 months off an antidepressant.

 

I think I have made SOME progress since there has been stages - depression turning into anxiety and anxiety is mostly physical tension and a bit less emotional panic, but that could be from the supplements I'm taking to help. I still have difficulty functioning day to day at home and at work.

 

I will also have to figure out how to decrease the supplements before or during re-introducing the SSRI. I'm on Tryptophan, seditol (magnolia bark), Travacor and Kavinace.

 

Thank you for any suggestions.

Share this post


Link to post
Nikki

Hi Janie....

 

Welcome. I have not taken Effexor, but alot of members here have and should be along to help you out.

 

Prozac is a stimulating ssri, and it can exacerbate your anxiety. Alot of people do reinstate a medication if they have gone off of it at a large dose.

 

That's about all I can tell you. Hang in there and keep checking in.

 

Nikki

Share this post


Link to post
Altostrata

Janie, I moved your new post here since it's a continuation of the questions you're asking in your Intro topic. This topic is a place where you can keep track of your progress and post any questions about your particular situation.

 

You've been off Effexor for 8 months. No one can predict if taking a little Effexor or any other antidepressant can reduce your withdrawal symptoms. Sometimes this helps people and sometimes it makes the nervous system upset worse.

 

Withdrawal syndrome tends to make our nervous systems hypersensitive. If you do try an antidepressant or any other neuroactive substance, try a very, very small amount first to see how it affects you.

 

Most antidepressants are processed by the liver. Those tests do not tell you what antidepressant will be most effective for you, only which might cause certain interactions with other drugs.

Share this post


Link to post
MrAnxious

Hey Janie,

 

I have read your thread as I have been searching for answers. I have been off Effexor completely since Aug 2012, so roughly 7-8 months and have been experiencing some pretty big waves and small windows. My anxiety is so intense that if i see somebody walking down the street i am already devising a plan on how to avoid them or whether i should look up them. This Effexor withdrawal is really kicking my butt. I am just wondering if you have gotten better or have gone back on a med ? Could you please let me know , because ur story sounds similar to alot of them out there.

 

 

Mr. A

Share this post


Link to post
Altostrata

I stand corrected, Travacor is not merely a weak multivitamin. It is a multivitamin fortified with some ingredients to which people with withdrawal hypersensitivity will react very badly:

 

From http://www.clinicvitamins.com/travacor/

Key Ingredients of TravaCor:

  • L-theanine to calm the patient by acting as a glutamate receptor antagonist
  • 5-HTP, which crosses the blood-brain barrier and is the direct precursor to serotonin
  • Taurine, which also calms the patient by binding to the GABAA receptor
  • Vitamin B6 (Pyridoxine HCL & pyridoxal 5'-phosphate), which is a necessary co-factor for serotonin and GABA production
  • Vitamin B12 (as cyanocobalamin) to support the nervous system and is a co-factor in serotonin production
5-HTP and the B vitamins are particular problems.

Share this post


Link to post
Nikki

Alto can you elaborate on Trytophane........

 

Years ago Jane Fonda promoted using it as an aid to sleep.

 

Thanks

Share this post


Link to post
Altostrata

For the discussion, please go to the Symptoms and Self-care forum and search for tryptophan.

Share this post


Link to post
Janie

Hi Mr. Anxious. Thanks for your post. I've been meaning to update my story. It's been a rocky, horrible 10 months. I'm now in month 11 since my full withdrawal last July (2012) from effexor. My initial depression changed to extreme anxiety with depression. I've been very close to going back onto a med but have not. After using Seditol(magnolia tree bark) that helped for a while, but was not enough, my doctor put me on replacement hormones, saying the progesterone has a calming affect. It did help greatly but was still not enough to live like that. Then she suggested I try saffron. I am able to cope and function and live using the saffron. I would love to see if others using this site could gain similar benefits. I am still suffering but if I take the saffron regularly AND keep stressors to a minimum, I can do quite well. The symptoms are reduced to tingles, and weak legs, or sometimes no symptoms much at all. If I get stressed, or don't take enough saffron, I do get the tight stomach, horrible anxiety and depression, muscle twitches, shakes and jitters and strong tingles/numbness. The worst is the emotional gloom, dispair and anxiety.

 

I've had several good weeks where being busy with work, no big stress going on and staying on routine, xercising and taking the saffron I feel highly functional, happy, and upbeat a lot of the time, as long as I don't think too much about the future or things that worry me. I'm also going to counseling and trying to get more support from friends which is helping. My husband has taken over most of the cooking so that relieves a lot of stress.

 

Anyway, here is how to use the saffron. I found out the suggested dosage on some internet chat board- I bought saffron from the spice section of the grocery story. It must be high quality - and I think from Spain is best. A $20 bottle has lasted me at least 4 weeks. I sprinkle about 20 stems (estimate 2 or 3 small ones as one stem) into a cup. Add a little water and then microwave it for 30 seconds. This softens it which might help it digest better, but might not be needed. I then add some cold water to cool it down. Maybe wait a minute so you are not eating something that still has microwaves in it. Then swallow it all. I used to put it in some yogurt but now I just swallow it by itself. It seems to help a little right away. But I notice I definitely feel better after about 2 hours. I think it takes that long to truly digest and enter your system. It should probably be taken with some food so your digestive juices are working on it. This lasts me about 10 to 12 hours. I found I need more before 12 hours is up, especially since there is that lag for digestion. So now I sometimes take more (maybe a half dose) if the jitters start to build up again. I am still working out my scheduling. I think it depends on how stressed the day is and if you are having a natural "window" or not. my doctor suggested I buy capsules, saying the brand Life Extension was good. I got that but ended up going back to the store spice since I could control the dosage better and it just seemed to work better. It doesn't have much taste so you don't need honey or anything with it but you could add that if you want.

 

If I take too much, I feel sleepy and kind of weird. Sometimes I felt so good I did not feel I needed more even after 12 hours. But in general I don't like to go too long. I think it builds up in the system perhaps but if you go too long without it, it will take a while to get back on track and feel stable again. Hard to say. I guess the doses should be geared to how you are feeling. But it seems I did best when I took it regularly, about 10-12 hrs apart, even if I didn't need it when the 12 hours were up.

 

This saffron helps with my anxiety AND depression. I plan to keep using this and taking one day at a time. I feel I can cope and function with this and not have to use a medication. I'm terrified of having to go back on any pharmaceutical med that effects the brain. I do think if and when I get very stressed (I have a sick relative that may die before long) I will have a very bad time again, but I just have to live through that. I do NOT want to resort to a benzo or SSRI. I just must stick this out.

 

If you try the saffron, please let us know how it works for you. Granted I might be getting extra benefit since I'm also on the progesterone. But the saffron is written up in books, and on Dr. Oz, etc.

 

Another thing to try is pregnenalone - available in health stores and The Vitamin shoppe. On several occasions I took a 50 mg tablet and felt much better within an hour or so of taking it. This is something I tried several months ago before the saffron or hormones. Every few days I'd take a 50 mg pill and felt better for a few days. Then I read that the recommended dose is only 10 to 20 mg. So now I take a 10 mg pill twice a day. I truly believe it does something. I think it helps the body create hormones and neurotransmitters. Try a fairly large dose just to see for sure if it is working. It might not be good to take a large dose too often though.

 

I hope someone can benefit from one or both of these suggestions. Would love to hear the experience of others.

 

Janie

Share this post


Link to post
Altostrata

Janie, so good to hear you're doing better.

 

Please add your experience with saffron to this topic http://survivingantidepressants.org/index.php?/topic/1381-im-just-wild-about-saffron/

 

Progesterone to this topic http://survivingantidepressants.org/index.php?/topic/1951-progesterone-for-women/

 

Pregnenolone to this topic http://survivingantidepressants.org/index.php?/topic/774-pregnenolone/

 

-- this is valuable information, people will be better able to find it in the future in those topics.

Share this post


Link to post
alexjuice

Hi Janie,

 

I am glad you are feeling better as well. I haven't heard of saffron. Sounds interesting and I'm glad it worked for you!

 

I'm more cautious with the hormones and the hormone precursors so I don't think I'm as likely to experiment with the pregnenolone, but I'll look into the saffron for sure.

 

Thanks for sharing your experience and results!

 

good luck,

alex

Share this post


Link to post
Janie

I want to update my story.  I'm afraid I'm going to have to cave in and go back on a medication.  I cannot go on like this.

 

In the past couple of months I've developed a new problem.  My heart beat is too slow and I have trouble breathing.  It could be dysautonomia.  I fear it has been caused by the saffron.  Sedatives can cause dysautonomia.  The saffron has helped me become functional by greatly calming the anxiety and smoothing out my depression spells and to live my life.  I notice that if I don't take it regularly, I spiral down into the extreme anxiety and or depression.  But although it is helping my brain enormously, it is the primary suspect of causing the dysautonomia (central nervous system/ autonomic nervous system is de-regulated and automatic responses like breathing, heartbeat, digestion, elmination become unstable). Basically I guess it was working as an antidepressant but with this dangerous side effect I must stop it. 

 

I just cannot go back to living in the hell I experienced before using the saffron. I don't see any recourse than to go back to being a slave to the drug companies and hoping some of their meds will still work for me to allow me to live my life.  Now I have to decide which one to try. I'm thinking wellbutrin since I heard that does not exacerbate/cause restless leg syndrom and that is what the effexor gave me but is now gone being off effexor. Or maybe buspar since it's not an SSRI and Mr. Anxious has had success with that.  I don't know who to go to for a perscription. Someone who could evaluate the one most likely to help me and cause the least side effects. I plan to try a new mental health facility but doubt they will know of or have an open mind about protracted withdrawal syndrome and take any care on what to put me on. I don't really trust any health professional.

 

I had an EKG yesterday at my GP's office and it confirmed my slow heart beat, which is only in the 40's at rest. Now she wants me to get a holter monitor and ECHO and says it is probably the saffron causing these problems. I sure hope if I stop the saffron my heart returns to normal, but what if I'm permanently damaged.  I feel so angry that all this has happned and my life is becoming ruined. One thing leads to another and it all started by taking the ssri meds!!!

 

I had wanted to try armour thyroid to see if that helped my moods. So many thyroid patients say they do better on that, including mental moods. I also want to get the MTHFR gene test to see if I need to take the active folate supplement that would help with my depression and anxiety, at least somewhat, but now there is no time to explore those things since I probably should stop / wean from the saffron as soon as possible and if I do that I feel I must get on a med to deal with the extreme and dibilitating anxiety that is sure to come back.

 

If any one has any ideas or advice I am listening!!  I already exercise and eat healthy foods (force eat since I have very little appetite), use acupuncture, try to reduce stress.  All those things are not enough though to be able to live another year or more in the state my brain is still in without saffron or something to assist the braim chemistry.  I'm thinking of trying hypnosis next. I am going to cut back on the saffron, suffer the consequences, move forward with the phychological counseling and when it all becomes unbearable again I guess I will ask for the medication Rx.

Share this post


Link to post
alex

Janie, first of all, I am sorry you are feeling bad.(forgive my english)

Secondly, we ALL suffer from dysautonomia.

Third, don't go fortune-telling and guessing that your anxiety will come back full force.You don't know.

I do understand your fear and dispair because I feel the same.I also stoped Effexor on July 2012, and let me tell you,it has been HELL.

But I must tell you that, despìte my enormous fear about this ordeal, symptoms like anxiety (especially) and depression are getting better.

There is one symptom that lingers strongly and that is insomnia.

But I can say I've had an overall improvement.Things were "terrifying" just a few months ago, now are "difficult".

Going back on psy med. again is something I would never do.It is just too risky.

This is a matter of time and patience Janie.

How long were you on Effexor?

Share this post


Link to post
Meimeiquest

Hi Janie,

 

I am so sorry for your suffering. And it sounds like you have been working so hard. My only thought is a book GiaK recently recommended, CFS Unravelled. It costs about $10 from Amazon. I know you don't have chronic fatigue syndrome, but it is all about restoring the autonomic nervous system. You can read Gia's notes about it in the media forum. Good luck!

Share this post


Link to post
Janie

Thank you Alex and Meimeiquest.  I appreciate your thoughts and encouragement.  I did not know dysautonomia was common among others with protracted withdrawal.  Is it also typical to develop Dysa. symtoms so many months into being drug free? or would it happen more from the start?  I stopped Effexor July 2012, but developed the slow heart beat and breathing problems just now, 1 year later!   I've been using saffron for about 3 months now and since it calms the anxiety I suspected it was calming things it shouldn't be - heart and breathing.  I'd like to know if others have experienced slow or rapid heartbeat and other autonomic system imbalances so I can decide if perhaps it is NOT the saffron, since i prefer to keep taking it for the help it gives.

 

On the other hand, I sometimes worry that using the saffron is too much like being on an antidepressant, and that my brain is not going to heal itself if I keep using it. So maybe it is time to wean off of it and suffer through the rest of my withdrawal, although it is so bad for so much of the time I just don't know if I can go on sometimes.  I have to admit I have had some major stressors in my life that have probably hindered my recovery.  If I could have a nice long period of low stress in my life it should help me make true progress. It's discouraging when I read posts of others who have been suffering for 3 , 5 years or whatever.  I do not want to suffer that long at the level I am still at. It is also not fair to my spouse and endangers my job. 

 

What is the reason most people try to be antidepressant free?  I know for me it was due to it causing restless leg syndrome and I felt it was causing me to have anger problems. I have some acquaintences on antidepressants and they seem to intend to stay on them their entire lives, because they think they need it.  I guess they have no side effects.

 

As for insomnia, do you attribute it directly to anxiety during the night? Did you rule out sleep apnea? Just asking because I am always trying to think of other (treatable) conditions that could be contributing to our misery. 

 

Thanks for the tip on that book Meimeiquest. That is certainly of interest to me so I'll look for the post about it.

 

I hope for you both to have some wonderful and long windows now and increasingly!

Share this post


Link to post
Meimeiquest

Hopefully someone will help out more soon...I don't know about many of your questions. But, yes, fast and slow pulses have occurred. But that doesn't mean they are "nothing"... If you would see a dr. for what you have going on without WD, as far as the heart, you should on WD as well. You can search for stories. The autonomic dysfunction can easily affect the endocrine system, and elevated cortisol levels are hard on the body. That may be the source of many symptoms.

 

Elevated cortisol also causes insomnia, and ADs can overstimulate the brain. If you think there is ANY possibility of sleep apnea, I would get it checked out. My diagnosis changed my life. I had lots of risk factors, no symptoms except fatigue. They told me the most damaging aspect of the apnea is that every episode stimulates adrenaline secretion...definitely adding to the autonomic problems. And that many of their patients come with psych diagnoses that resolve with treatment of their sleep disorder.

 

I stopped my AD because of side effects (especially mania) that emerged towards the end of my antipsychotic taper...which I started because I felt so much better after I started CPAP. The more I learn, the less I trust the safety of all psych meds.

 

If you are able to read that book, it will give you lots of ideas...maybe too many :).

Share this post


Link to post
Narcissus

 

 

Is it also typical to develop Dysa. symtoms so many months into being drug free? or would it happen more from the start? 

 

People often report having delayed withdrawal reactions, so it's certainly not unheard of.

 

 

 

 

I sometimes worry that using the saffron is too much like being on an antidepressant, and that my brain is not going to heal itself if I keep using it. 

 

I'm sure you're still healing, but if it's making you nervous then you can ween off of it, and it'll be one less thing to worry about.  The difficulty with taking so many different supplements is that they can turn into new sources of anxiety, new things to worry about.  

 

 

 

 I have to admit I have had some major stressors in my life that have probably hindered my recovery.  

 

I'm sorry to hear that, Janie.   Keep in mind that even with life stresses going on, you will still recover.

 

 

 

 

It's discouraging when I read posts of others who have been suffering for 3 , 5 years or whatever.  

 

Don't let this discourage you.  These are unusual cases, and they're not feeling as badly as you are now for that entire length of time.

 

Hang in there!

Share this post


Link to post
Janie

Thank you for the encouragement Narcissus.  The saffron helps calm me and stops or slows the belly churning and anxiety. I wonder if it is calming too much and causing this slow heart. 

 

 I REALLY want to know if my fellow sufferers are having heart and breathing problems like I've developed.  Until now, I thought we were all having mostly anxiety, depression, aches and tight muscles, shakes and jitters brain pain and such. I thought it was mental and muscles.  To think that organs are affected is troubling.  I didn't know it could go that far! I guess I need to read more posts to understand all the permutations and manifestations of this syndrome.

 

Alto, can you comment?  I need to know how typical it is for protracted withdrawal suffers to have organs de-regulated, especially the heart.  This will help me know whether to blame the saffron or not for my slow heartbeat and breathing problems.  I'd like to defend it. 

Share this post


Link to post
alexjuice

How much saffron are you taking and how are you taking it? Why does your doctor think that the saffron is causing your cardiovascular symptoms?

Share this post


Link to post
Altostrata

I'm also curious as to how your doctors pinned the problem on saffron.

 

The only way to tell if it is the saffron is to decrease it and see if the symptoms get better.

 

If that doesn't happen, I would think it was withdrawal syndrome dysautonomia. This tends to change and improve over time.

 

Are you taking fish oil and magnesium supplements, see

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

http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/

Share this post


Link to post
Lilu

Janie, it would be helpful to know exactly what you are on right now, all the supplements and their doses.  Perhaps I can advise.  

Share this post


Link to post
Janie

Thank you all for responding and for your thoughts and input. I wrote a long response some days ago, but then it got lost so it was very frustrating when that happened!  I believe my GP doctor picked on the Saffron because doctors are leary and critical of alternative meds, and secondly there is some logic to pinning it on the saffron since it calms my anxiety, perhaps it is calming too much on the autonomic nervous system.  I have been going to a holistic place and also keeping my GP.  I feel guilty to be getting help outside my GP, but the holistic place looks at more lab work and seems to know more stones to look under, more natural remedies that could help. So, I may have avoided telling the GP that I also had tried Cytomel (thyroid t3) which the holistic doctor prescribed at my request because I suspected it might help me. I am already on T4 and thought my mood might be helped with either the natural desicated thyroid or by adding the T3. I may have told her, I'm not sure. But she zoomed in on the Saffron as the most likely suspect.  I started Saffron in April so I had been using it 4 months.

 

Now that I have reviewed my journals, I am quite convinced the blame is the T3. I took only one half of a 5mcg pill on 6/29 and felt uncomfortably weird that day. I felt my organs/heart were straining and did not like the feeling at all.  A friend suggested I try it again the next week, but only take 1/4 pill 2 times a day.  So I did that for several days 7/8 through 7/11 (big mistake) and it didn't make me feel better consistently. So I gave up on it. I felt it was not working or I was too sensitive or something.  In reading my journal now it does say I had felt out of breath and that heart was too slow and fetl agitated by it but I  guess I stupidly thought I just needed to 'adjust' to the cytomel, since it did seem to calm the anxiety, but not consistently.  During that experimental period I visited my holistic doctor on 7/9 who noticed my heartbeat was only in the 40's.  She said it was proof that I am still hypothyroid so she suggested increasing T4 and forget cytomel since it wasn't really helping. Nothing was said about possibly cytomel causing the slow heart. Perhaps I didn't tell her about the flutters. I can't recall.  Journal states I agreed with doctor that that the cytomel was making me feel too weird and I would increase t4 instead.  She forgot to give me a persc so I increased the T4 myself by taking an extra half pill of the bottle I had.  I think I did not fully put together the cytomel and the heart/breathing since  I thought it was part of the anxiety  and muscular tightness I had in my stomach and chest area off an on anyway. Now I can see the clear connection to Cytomel.

 

I have looked up cytomel and found that it is very dangerous. I had not learned my lesson and research things thoroughly before ingesting it!  Maybe I would have still tried it, since I have felt desperate to find things to help. Cytomel can mess up the heart so now I do fully blame it. I only took a few parts of a pill a few days.  But it seems to have caused this lingering heart problem!  I want to make sure the doctors know  this!  I had not fully examined all my journals until just now in writing this post. Writing this made me look at specific dates and while I suspected it before, now I can see the evidence on paper! When I lost the first post I was fairly sure it was the cytomel. It's good I lost the first post I wrote because in writing this second one I read my journals and now have very strong evidence against the cytomel.

 

This week I had an echocardiogram (results unknown) and today I am to get the 24 hour holter monitor. I continue to have flluttery?, straining heart and shallow breathing - at times not noticeable and at other times very distinct and uncomfortable and scary.  Since my usual WD symptoms are better lately, I was wondering it if was all related to protracted withdrawal and just a shift in the symptoms to a new manifestation of the anxiety.  However, I now believe strongly that heart problems are cytomel T3. The improved anxiety symptoms (past 10 days or so) could be due to increasing the T4 about a month ago. (or could just be a window)

 

 I've been doing pretty well with little or no muscle spasms, pain and tightness.  The churning in solar plexis has finally gone. I can actually take a nap in the daytime, whereas before the anxiety was too great to sleep. My mood is more stable most of the time.  I do have numbness - legs going to sleep at any time of day, and still some anxiety or depression for at least part of every day.

 

What I've been taking:

multi-vitamin, vit C, D3 - about 12,000 iud per holistic doctor, calcium, generic synthroid for thyroid 75 mcg per day, selenium, pregnenalone (10-30 mg pr day depending on how i feel) Omegas. b-complex-ran out and have not taken for a month.   Saffron about 10 strands 2x day but have cut back in last week to 10 a day or less) I have been using a mortar and pestal to grind the strands, add water, microwave 30 seconds and drink it. With the grinding it seems to digest much faster than swallowing whole strands.  Taking iron, ferro-sequels, since holistic docs said mine was low. Started  magnesium and folic acid about 4 weeks ago but stopped last week because GP doctor said to stop magnesium and I also read folic acid can build up and make you feel worse if you have the MTHFR gene defect and can't process it.  I want to order the gene test but still researching how and where to order it, privacy issues, how will I interpret it etc. I also am on bio-identical estrogen patch and bio-identical compounded pill progesterone.

 

I exercise quite a lot so my heart should be basically healthy. I've always had low /healthy blood pressure and no heart problems in the past.  My cholesterol is good.

 

Thank God I seem to be doing okay so far, without the level of saffron I was on. I am still taking some so as not to stop too abruptly. Perhaps the increase in synthroid t4 is helpling.  I hope so, and that it is not just a window.  I increased it on my own starting July 5 by taking 1/3 and later on 1/2 pill at bedtime in addition to the 50 mcg pill in a.m. I now have the rx for 75 mcg daily so will just take that in a.m. With the build up in my system, now a month later, I seem to have improved in many of my symptoms.

 

These 2 heart tests will be sent to my GP. I'm disappointed I will not be consulting directly with a cardiologist. They are only doing the tests for the GP and sending a report. (?!)  I suppose there is a medication to help regulate or speed up the heart. I hope if I am prescribed something I am not too sensitive or that I don't react badly. Perhaps I should wait a month to see if I can improve in time naturally, before resorting to a medication, but the heart is so scary sometimes I feel like I should go to the emergency room!

 

Sorry this post is disjointed and repetitive. I edited it so much it may not flow well. I will let you know what happens. Thanks for your support! Hopefully someone can learn from my mistakes and we can all continue to be educated by sharing our stories.

Janie

Share this post


Link to post
cymbaltawithdrawal5600

 

D3 - about 12,000 iud per holistic doctor

 

Whoa! I was ingesting only 1800 IU per day, some was in the multivit, the rest was in the omega 3 caps. My heart palpitations became darn near constant! The RDA for my age group is 600 IU and I think anything above 5,000 IU is not recommended. Vit D is actually a hormone and it is 'oil soluble' (doesn't wash out in the urine, stays and builds up in the body).

 

 

Vitamin D toxicity can cause non-specific symptoms such as anorexia, weight loss, polyuria, and heart arrhythmias.

 

The above is just one of the many 'yada yadas' one can find on the internet. Source: National Institutes of Health, Office of Dietary Supplements

 

http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/

 

I quit taking any kind of supplement. I'll take my chances with food.

Share this post


Link to post
Lilu

Janie, first it would be much easier for us to comment if you created a list, maybe in your signature of all that you are taking and their doses.  I did read your post, and overall my impression is that you are taking a lot of meds and or supplements for the thyroid. If T3 medication caused heart problems for you, why not suspect the other thyroid meds that you are taking.

 

Also,  as cymba mentioned above, 12000 IU can be very dangerous, as vit D builds up in your tissues.  So does Iron.  Supplements can be just as harmful as prescription drugs and you have to be very careful. The interaction of the two can also cause side effects.  Even something as healthy and natural as grapefruit interacts with hundreds of medications by preventing the body from flushing them out as needed.

 

Research EVERYTHING that you are taking, all the possible side effects, and reduce or discontinue one by one, to isolate the problem.  It is good that you are keeping a detailed journal.

Share this post


Link to post
alexjuice

I do agree about the vitamin D. 12,000IU/day is a fine dose assuming the prescriber is monitoring your serum levels. Otherwise it seems too high for a maintenance dose, IMO. If I were you, I'd follow up with the practioner about this, especially since you had an issue with the thyroid...

Share this post


Link to post
MrAnxious

Janie, i hope you get better...whats new? How are you holding up..still drug free? I have sleep apnea now was recently diagnosed...guaranteed its from w/d effexor because it seems too common..never had a problem before all this ! Keep in touch and know you are not alone.

Share this post


Link to post
Janie

I am not doing well, and feeling like going back on an AD. I can't stand living like this. I had some good weeks but lately I'm quite bad again so I'm discouraged.  The cardiologist doesn't know the reason for my slow heart beat and acts like there is nothing to be done. I think I will get a 2nd opinion. she did say I can get a month-long monitor put on to capture more of the palpitation events since the 24-hour monitor only caught 1 skipped beat - i was having a good day.  I am to start the new monitor this coming week. She seems more concerned about the palpitations, which I think is probably like pre-panic attack level anxiety. I am more just as concerned or more concerned about the bradycardia, heart beat down to low 40's and oxygen level in low 90's sometimes (according to my pulse-ox device). If it gets any lower I could be in real trouble of fainting or who knows what. As it is I am weak, and feel out of breath sometimes. I can no longer exercise vigorously.

 

The d3 was perscribed by doctors.  I have been on d3 supplementation for over a year per doctor orders.

 

Mr.Anxious, you are still on buspar? Anything else?  Is it working pretty well for you? Thanks for asking.  Oh , something interesting is the cardiologist said Effexor is known to sometimes cause heart beat problems when you first go on it , or when you first go off it.  she didn't seem to think it related to me since my problem is happening (or just discovered??) a year after going off it. But I have to think there is a connection! 

Share this post


Link to post

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...