marypat Advice needed

[marypat]

Hello,

 

I am writing on behalf of my sister who was on Effexor for 14 years at 75.mg. Her oncologist recommended it as a non hormonal remedy for hot flashes, as she had been diagnosed with an early stage of uterine cancer.

 

She stayed on this dose for 14 years, but developed neck pain and a slight tremor in her hand. She went to an acupuncturist who told her that this problem was caused by Effexor, so she decided to stop taking the drug. Her internist told her to stop cold turkey.

 

My sister, advised by the acupuncturist, first reduced to 37.5 mg, then from the beginning of Feb. through the second week in April, tapered off, counting down beads, until she went from 37.5 to 7, then stopped.

 

She experienced crying spells, jittery sensations, nausea, insomnia but gradually pulled out of it then in August, began taking St. John's Wort for hot flashes.

 

She became a bit depressed towards the end of August, then started with crying spells that came out of nowhere. They became worse in Sept. and in early OCt. she had a GI bug that caused diarreaha for 10 hours and the crying spells increased.

 

We went to see her gyn who said all of this was from the results of coming off of Effexor and that she could prescribe some prozac to bridge the withdrawal.

 

My sister took 10 mg of Prozac and the next day, I rushed her to the er because she had uncontrollable shaking, nausea, crying, panic attacks. They told her that she had a paradoxical reaction to Prozac and gave her Ativan which calmed the shaking, crying, and anxiety.

 

She saw her internist who told her to take 37.5 mg of Effexor (that was two days later). The result was that she woke up with a burning sensation all over and pins and needles in her arms and legs. I could not get the dr. so called the pharmacist to see if she had an interaction with the Ativan.

 

The pharmacist said that it was the Prozac that remained in her body interacting with the Effexor and that the burning sensation was a sign of seratonin syndrome-- for which the internist prescribed more ativan.

 

When we let the gyn know what had been going on, she suggested seeing a pyschiatric nurse who would be more knowledgable in managing meds. We saw one who prescribed Clonazapan. My sister took a small .25mg dose and it made her very nauseated and anxious.

 

By this time, she was still experiencing a burning sensation in her arms and still had pins and needles in her legs. After she had the reaction to the Clonazapan, the nurse suggested that she stay off all meds and see how she was.

 

My sister seemed to improve, but still experienced crying spells, but towards the end of November, she was getting them once in 2-3 days and I thought she was generally improving.

 

This past week, she went to the dentist, had a gum infection for which she was given some antibiotics and became very sick and her anxiety and crying spells returned.

 

I had sought out a new internist as we were not satisfied with our medical doctor who told her to take the 37.5 effexor having just taken the prozac,

 

The new doctor listened to all the above and said it couldn't possible be effexor withdrawal, that none of the facts fit her symptoms. He has bascially said that she suffers from depression. She never had depression before. His suggestion-- take more anti depressants.

 

Does this sound familiar to any one? I have read Dr. Healy's 2009 paper that suggests that taking St. John's Wort may cause withdrawal symptoms to reoccur. Anyone have that experience.

 

I was also interested to read on the site that sometimes symptoms may reoccur around 5 months after stopping the drug. That would be about right because it wasn't until October that all of her symptoms really came back in force, but would like to know more about this.

 

My sister has found that vitimin B-2 has helped with the pins and needles. Her acupuncturist thinks her thyroid may be effected and be causing the crying spells, but her blood work came back as normal.

 

Would anyone have any suggestion on where we go from here. I really don't think that my sister is depressed, except now she worries that she may be depressed. I keep telling her it isn't her-- that she has been on the drug for 14 years and her body is trying to readjust to its absence. We both would appreciate any advice or help to get through this terrible time.

Edited December 8, 2012 by Altostrata
added paragraph breaks for readibility

[Altostrata]

Welcome, marypat. Thank you for joining us.

 

Please understand there is a vast ignorance about tapering and withdrawal throughout medicine and alternative medicine, too. Doctors should know but do not. Millions of people are endangered by this.

 

Too-fast withdrawal from psychiatric medications often causes autonomic instability -- withdrawal syndrome. The good news is the nervous system tends to gradually repair itself. The bad news is this takes time, sometimes a lot of time.

 

Hello,

 

I am writing on behalf of my sister who was on Effexor for 14 years at 75.mg. Her oncologist recommended it as a non hormonal remedy for hot flashes, as she had been diagnosed with an early stage of uterine cancer.

Antidepressants are an absurd treatment for hot flashes. If they work, they do it by disrupting normal hormonal functioning.

 

She stayed on this dose for 14 years, but developed neck pain and a slight tremor in her hand. She went to an acupuncturist who told her that this problem was caused by Effexor, so she decided to stop taking the drug. Her internist told her to stop cold turkey.

Extremely bad advice from the internist. Please consider filing a complaint with your state medical board.

 

My sister, advised by the acupuncturist, first reduced to 37.5 mg, then from the beginning of Feb. through the second week in April, tapered off, counting down beads, until she went from 37.5 to 7, then stopped.

 

She experienced crying spells, jittery sensations, nausea, insomnia but gradually pulled out of it then in August, began taking St. John's Wort for hot flashes.

 

She became a bit depressed towards the end of August, then started with crying spells that came out of nowhere. They became worse in Sept. and in early OCt. she had a GI bug that caused diarreaha for 10 hours and the crying spells increased.

Her taper off Effexor was too fast and she experienced withdrawal symptoms, from which she was gradually recovering.

 

However, when you've experienced withdrawal syndrome, even if you seemed to have recovered, your nervous system may still be sensitized to psychiatric drugs. The St. John's Wort may have stirred up the autonomic instability again. (Noradrenergics are terrible for withdrawal syndrome.)

 

We went to see her gyn who said all of this was from the results of coming off of Effexor and that she could prescribe some prozac to bridge the withdrawal.

The gyn is fairly informed, but did not realize the degree your sister's nervous system was sensitized.

 

My sister took 10 mg of Prozac and the next day, I rushed her to the er because she had uncontrollable shaking, nausea, crying, panic attacks. They told her that she had a paradoxical reaction to Prozac and gave her Ativan which calmed the shaking, crying, and anxiety.

Correct, it was an adverse reaction to Prozac, which was excessively activating (stimulating) for her sensitized nervous system.

 

She saw her internist who told her to take 37.5 mg of Effexor (that was two days later). The result was that she woke up with a burning sensation all over and pins and needles in her arms and legs. I could not get the dr. so called the pharmacist to see if she had an interaction with the Ativan.

Same internist? This attempted reinstatement of Effexor, which should have taken place in April when withdrawal symptoms first appeared, further destabilized her nervous system.

 

The pharmacist said that it was the Prozac that remained in her body interacting with the Effexor and that the burning sensation was a sign of seratonin syndrome-- for which the internist prescribed more ativan.

Unlikely it was serotonin syndrome, but it was an adverse reaction to the Effexor plus Prozac.

 

When we let the gyn know what had been going on, she suggested seeing a pyschiatric nurse who would be more knowledgable in managing meds. We saw one who prescribed Clonazapan. My sister took a small .25mg dose and it made her very nauseated and anxious.

If she was also taking Ativan, she was taking two benzodiazepines. In any case, this is an adverse and paradoxical reaction (paradoxical because it caused anxiety).

 

By this time, she was still experiencing a burning sensation in her arms and still had pins and needles in her legs. After she had the reaction to the Clonazapan, the nurse suggested that she stay off all meds and see how she was.

If she had been taking Ativan regularly, this would might have added benzo withdrawal symptoms to the Effexor withdrawal syndrome.

 

My sister seemed to improve, but still experienced crying spells, but towards the end of November, she was getting them once in 2-3 days and I thought she was generally improving.

 

This past week, she went to the dentist, had a gum infection for which she was given some antibiotics and became very sick and her anxiety and crying spells returned.

Yes, additional anesthetics or other medications can trigger withdrawal syndrome again in a sensitized nervous system.

 

I had sought out a new internist as we were not satisfied with our medical doctor who told her to take the 37.5 effexor having just taken the prozac,

 

The new doctor listened to all the above and said it couldn't possible be effexor withdrawal, that none of the facts fit her symptoms. He has bascially said that she suffers from depression. She never had depression before. His suggestion-- take more anti depressants.

Your old internist might otherwise be a good doctor but doesn't know anything about psychiatric drugs.

 

Your new internist is WRONG and also probably doesn't know anything about psychiatric drugs. It sounds like your sister has prolonged Effexor withdrawal syndrome, or at least withdrawal-induced nervous system hypersensitivity, exacerbated by trials of several other psychiatric drugs.

 

Does this sound familiar to any one? I have read Dr. Healy's 2009 paper that suggests that taking St. John's Wort may cause withdrawal symptoms to reoccur. Anyone have that experience.

This is very familiar.

 

I was also interested to read on the site that sometimes symptoms may reoccur around 5 months after stopping the drug. That would be about right because it wasn't until October that all of her symptoms really came back in force, but would like to know more about this.

Your sister actually had withdrawal symptoms or withdrawal-induced hypersensitivity since April, but the symptoms were exacerbated in October.

 

My sister has found that vitimin B-2 has helped with the pins and needles. Her acupuncturist thinks her thyroid may be effected and be causing the crying spells, but her blood work came back as normal.

Good to hear she's found something that helps pins and needles. The crying spells sound like they are from Effexor withdrawal.

 

Would anyone have any suggestion on where we go from here. I really don't think that my sister is depressed, except now she worries that she may be depressed. I keep telling her it isn't her-- that she has been on the drug for 14 years and her body is trying to readjust to its absence. We both would appreciate any advice or help to get through this terrible time.

Are the crying spells her only symptom? If so, after all she's been through, that's relatively mild for prolonged Effexor withdrawal syndrome.

 

She might do well with some psychotherapeutic techniques to control the crying spells, and rather than catastrophizing, thinking positively that these will go away in time as her nervous system recovers.

 

Since her nervous system clearly has become hyper-reactive, if I were her, I would stay far, far away from psychiatric drugs in the future.

 

Please see our Symptoms and Self-Care forum for other suggestions.

 

(Also, please put paragraph breaks in posts, it makes them easier to read.)

[Shanti]

Alto was thorough in the response so I don't have much to add. I noticed you said she is taking B2 and that helps. Is she taking any other supplements? There aren't many supplements people in withdrawal can tolerate. You might want to look into that and see. I had to stop all supplement except for Fish Oil, Ginger and Niacin. The reactions to certain vitamins or herbs for us are really bad.

 

I am glad your sister has you to help her like this. Tell her to hang in there, she will recover from this ordeal. If she can, maybe she could join the forum as the support here is very helpful.

[marypat]

Thank you so much for your reply, particularly after the visit to the internist who wanted my sister to go onto antidepressants for her "depression" which he very quickly labeled her crying spells, fatigue, and panic attacks.

 

The question arose as to what other symptoms has she had-- basically the crying spells, feeling jittery, insomnia, panic attacks, pins and needles in her arms and legs( that came after she had the Prozac/Ativan mixture). The B-2 helps greatly with that. She also takes fish oil, but is cutting out all other supplements, except the Vit. B-6 that a holistic doctor said she needed. He also believes her thyroid is not functioning properly.

 

Can effexor withdrawal also impact the thyroid? Has anyone had this problem? The holistic dr.'s take on this was that the root cause of the crying spells is that somehow the thyroid has been impaired. He is very cautious and before using any homeopathic medicine on her, he want to give her 2 weeks on a low dose of Vit. B-6 to see how she reacts to that.

 

As I understand the comments, at this stage of her withdrawal process, the best thing for her to do is stay off of as many meds and supplements as possible and let time heal the body. She was actually coming along well, I thought, by taking long walks outdoors and working in the garden.(she is retired) As mentioned, the crying spells had really been reduced and she was having good days, until she went onto the antibiotic, then she seemed to just get sick all over, with the crying spells and panic attacks returning.

 

She has taken up a few simple ant-anxiety yoga poses and that has helped too.

 

I am so grateful for this site. There are times when I have not known where to turn to get help for my sister.

 

Thank you!

 

Marypat

[Sparrow]

Hi Marypat, and welcome. How wonderful to have such a concerned and devoted sister as you!

 

Vitamin B-6 can be very activating to people in withdrawal. What does the holistic doctor say she "needs" it for? Was any testing done? Barring a proven deficiency, she doesn't need it. It really is best avoided in withdrawal.

 

The chaos into which one's body is thrown during withdrawal can impact just about anything, including the endocrine system. However, thyroid disease is also extremely common in menopausal and postmenopausal women. If the doctor thinks there's a thyroid problem, again that needs to be tested to determine what's wrong and how to address it. There are simple blood tests that show whether there's an over- or underfunctioning of the thyroid. Crying spells are not a valid indicator of thyroid function, as this holistic doctor apparently thinks.

 

You'll find as you read more on this site that "holistic" docs, naturopaths, etc., are as massively ignorant on the subject of polypharmacy, drug withdrawal, and its aftermath as their more conventional brethren.

 

Best wishes to you and your sister. You have come to the right place for support and sensible guidance.

 

Sparrow

[Altostrata]

I agree with Sparrow, I'd be very cautious about the holistic doctor's recommendations, and the B6.

 

Older people are often low in vitamin B12. Does your system like liver? She might eat a little and see if it makes her feel better. Sometimes B12 shots help, sometimes hurt, so be careful with shots and supplements, they may be too strong.

[marypat]

UPDATE FROM MARYPAT

 

I"m not sure if replying to my own post is the proper way to enter this, but here goes.....

 

First of all, a big thank you to those of you who offered advice regarding my sister's disastrous experience with Effexor withdrawal and doctors. I am happy to report that she is doing much better now. She is definitely having some waves, but the windows are getting bigger and more frequent. There has been a big change since last September when everything came crashing down. (also, a big change since she stopped seeing doctors!!!!)

 

I want to emphasize how correct the advice was that we received re supplements. My sister was diagnosed as being deficient in B-2, B-6, B-12 and having a thyroid problem as well, which was determined through testing. However, anything in the way of a supplement, except for B-2, that was given to her in the last month seemed to upset her system. even more. B-6 and B-12 gave her IBS, etc. etc. etc. So she is now just taking fish oil. B-2 and a Chinese herbal preparation called Gui Pi Tang, given to her by her accupuncturist. This helps her sleep-- it does NOT contain any herb such as valerian. Anyway, she is so very much improved. She has found that taking B-2 has stopped the pins and needles that she had in her arms and legs a great deal. She still has a little of that sensation in her arms, but it is very much diminished.

 

My sister was also troubled by non-stop insomnia, but is able to sleep at night. She has found that yoga really helps. For 15 minutes before bed, she does a yoga posture where you lay flat on your back on the floor with legs resting against a wall, doing deep breathing exercises. If anyone has a problem with effexor-withdrawal related insomnia, try looking up yoga poses to treat this.

 

Her crying spells come maybe for 10 minutes every 4-5 days which is a vast improvement. (As a reminder, she came off of Effexor too rapidly cutting down from 37.5 mgs to 0 in one month. The dr. at the time said that was a gradual taper and we had not come across Dr. Healy and the 10% rule.

 

One problem that persists is nausea. However, instead of having it all day long, she only gets it in the am after she eats. Ginger tea (made by boiling water and slices of fresh ginger) seems to resolve it after a hour or so, and then she is ok for the afternoon and evening, even after she eats. This is better than what she experienced back in October where she was nauseous for the entire day. She still does not have much of an appetite and is very thin, but hopefully that will improve when the nausea lessens.

 

Exercise in the fresh air, like a 8-16 block walk, also seems to help her feel better all around, particularly with nausea.

 

So there is indeed hope for surviving antidepressants but it does take a mighty amount of time, self-education,support to get through to the other side.

 

Marypat

[Altostrata]

Thank you so much for posting this update, very properly in your topic, marypat.

 

I am very happy your sister is feeling better. Please drop in and let us know how she's doing.

 

Happy new year and good healing to you and your sister.

[dalsaan]

Hi Marypat

 

Great update. So glad to hear things are turning around for your sister. Has she tried taking some of the ginger tea before the nausea sets in? It might help to prevent it. Just a thought

 

Dalsaan

[marypat]

Good idea, I passed it along and my sister is going to try a morning cup of ginger tea before attempting to eat. She also has found that a very plain diet is best. Marypat

[marypat]

Another question....

 

Of course, as soon as I wrote how well my sister was doing, she had a terrible day with anxiety, nausea, crying spells, We can't figure out what could have caused a relapse, but there you are, up and down. She has been relatively up for the last several days. However, every morning, she experiences nausea when she gets up. Doesn't matter if she has a few saltines while in bed or not. She gets up, makes some ginger tea, has breakfast, but has nausea through late morning. The ginger tea and yoga help, but some days, the nausea lasts until noon, and then other days, it just passes off after the ginger tea. Usually by 5 pm, she is feeling well. Does this sound familiar? Do other people have this problem with nausea?

 

Just as an added note, she was on Effexor for 14 years, came down too rapidly (like 75 mgs to 37 in 3 months, 37.5 to 0 in months). when she was on Effexor, if she was late or misssed a dose, she would also get nauseous, but I was curious if this was a symptom that bothered other people too. Thank you very much!

 

Marypat

[dalsaan]

Hi Marypat,

 

Nausea is quite common in withdrawal. When I had it quite bad I used to take ginger tablets that they prescribe for motion sickness.

 

cheers

 

Dalsaan

[Altostrata]

marypat, symptoms come in waves with windows in between. The symptoms gradually lessen while windows get larger and more like normality. Please help your sister to be patient and not to be discouraged by the ups and downs.

[marypat]

Thank you for the encouragement; it is discouraging when I seem to regress after feeling good. I really appreciate people like yourself sharing and offering the encouragement I need; sometimes I did think I would never come out of this. THANK YOU! Elizabeth - Mary Pat's sister

[Wingbatty]

Just adding - encourage her with the yoga! I had a doctor tell me once that yoga, in particular the vinyasa type where you are pairing breathing control with movement, is the only way we have control over our autonomous nervous system. We can calm ourselves down this way - it's the only real way to do it.

 

Now that I've been doing yoga for a long time I have learned how to breathe on my own & calm myself down. No more panic attacks on airplanes! I can slow my own heartrate fairly easily now.

 

To to mention, the practice will increase her endorphins...