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~Seek first to understand, then be understood~
~*~*~*~*
If you're looking for information on a particular topic, type that word in the search box below. If I have written about that subject, a list of posts will appear. If no posts come up, I haven't written about it...yet. Emails, and questions in the comments section for possible posts, are welcome.
~*~*~*~*
I have a "friend" who shows up once a month. She turns my world upside down, over and over again.
I am a good person, caring and sweet, but when she comes to visit, I could rip off your head.
She takes no prisoners, foul words she does spout, I try to keep the words in, she lets them come out.
People don't understand me, or what this is about, to have this creature inside my head.
I despise who I am, half of the time, I feel sorry for my daughter, family and friends.
There's no way to describe it, for those who don't know, it's a living nightmare, she really needs to go.
~Neysia Manor, Rest in Peace
Showing posts with label PMDD treatments. Show all posts
Showing posts with label PMDD treatments. Show all posts

Friday, March 29, 2019

Shine a Light on PMDD - April is PMDD Awareness Month

BOSTON, MA, March 29, 2019 -- A global awareness campaign will kick off this April to help “Shine a Light on PMDD” on a little known, debilitating and life-threatening condition that takes an average of 12 years to be correctly diagnosed. 
Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder which impacts approximately 1 in 20 women and individuals assigned female at birth (AFAB) of reproductive age - a staggering 60 million worldwide. With symptoms including severe depression, overwhelm, and anxiety appearing in the two weeks before menses, PMDD takes a toll on sufferers’ ability to work and maintain relationships with partners and family. In the 2018 Global Survey of Premenstrual Disorders, out of 1,425 patients with prospectively-confirmed PMDD: 
● 16.8% reported having lost a job due to PMDD 
● 56.7% reported having lost an intimate partner relationship due to PMDD 
● 98% and 97% feel PMDD puts a significant strain on their intimate partner relationship and family relationships, respectively 
● 42.7% reported problems with parenting due to PMDD, with 10.5% feeling completely unable to parent during PMDD 
The relentless emotional and (for some) physical pain also drastically increases the risk of suicidal behaviors. In the same survey, 30% of patients with PMDD reported that they had attempted suicide to escape their symptoms. Sadly, this number does not include those with PMDD who have died by suicide, which suggests that 30% is a low estimate for the rate of suicidal behaviors in PMDD. Appropriate identification and treatment of PMDD are therefore important not only for reducing suffering but also for saving lives. 
The same survey also showed it takes an average of twelve years and six healthcare providers to receive an accurate diagnosis of PMDD. After years of suffering, individuals with PMDD describe learning about the disorder as a ‘lightbulb moment’. 
“PMDD has been invisible for far too long,” according to Amanda LaFleur, Co-Founder & Executive Director, International Association for Premenstrual Disorders (IAPMD), the global leader of PMDD awareness and education. “It’s underdiagnosed, misdiagnosed and, at worst, the lack of understanding leads to harmful ridicule and shaming of suffers. During PMDD Awareness Month we need to create millions of life-changing lightbulb moments across the globe so people can get the support and treatment they need!” 
This year, IAPMD is again collaborating with a coalition of organizations, including U.S.-based Me v PMDD and U.K.-based Vicious Cycle: Making PMDD Visible, to ‘Shine a Light on PMDD.’ Resources to support awareness-building are available on pmddawarenessmonth.org. Website visitors can access the PMDD Awareness Month Toolkit, find facts and figures about PMDD, create a fundraiser, and share their story.
Individuals with PMDD are encouraged to add their voice to the women's reproductive and mental health movement and receive timely updates on work underway to inspire hope and end suffering in those with premenstrual disorders. 
“This is a galvanizing movement in women’s health,” according to Sandi MacDonald, IAPMD Board President. “PMDD is a perfect storm where #MeToo and #TimesUp, meets mental health awareness, meets suicide prevention. This campaign will be that ‘eureka!’ or ‘light bulb’ moment of insight, and then sufferers and activists around the world are empowered to raise awareness of PMDD and increase access to effective treatment options.” 
While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance but rather a severe neurobiological reaction to the natural rise and fall of estrogen and progesterone. Symptoms occur the week or two before menstruation and go away a few days after bleeding begins. There is no blood or saliva test to diagnose PMDD, but these tests can rule out other underlying disorders. Diagnosis is done by tracking symptoms for at least two menstrual cycles. As noted above, women and AFAB individuals with PMDD are at an increased risk for suicidal behavior. Although PMDD has been included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and International Classification of Diseases (ICD) for years, it continues to be disregarded or misunderstood by doctors and the general public.
# # # 
Organizational Contacts: 
Amanda LaFleur
Co-Founder & Executive Director, IAPMD 
1-800-609-PMDD (7633) 

Laura Murphy
Project Co-Founder/Director, Vicious Cycle
Twitter: @viciouscyclepmd 
+44 7739 342590 

Sheila H. Buchert Co-Founder & COO, Me v PMDD, Inc. 
727-421-1489   

Friday, August 12, 2016

PMDD Quote to Reflect On

From a participant in the Facebook groups...

~I came to the realization that PMDD is as much of a spectrum disorder as autism is. Everything is different for each of us, severity so different, that there is no real way to pin it down. Maybe that's why treatment is so elusive. We are trying to classify it to fit in a single box, and it simply can't. In other diseases there are finite ways to tackle it. That is just not so with any spectrum disorder.~ 

Sunday, March 9, 2014

Scientific Awareness of PMDD is not the Problem



Almost daily I hear someone mention how we need to raise awareness of PMDD, so that more studies of this debilitating disorder will be done, and someone can finally unlock the secret of what causes PMDD and how to successfully treat it.
So one day last August, a week before my most recent brain surgery, I was apparently looking for some challenging reading material when I got out of the hospital, (thinking positive, I imagine) so I spent an hour and a half clicking on links and printing out various scientific abstracts and studies I could find on PMDD.
In just that small segment of time, I found nearly 50 studies on PMDD, which broke down as follows:
2013 - 19
2009-2012 - 18
2006 - 2008 -  I already have most of these in my files, so did not print them out again
2001-2005 - 10
I am sure there have been countless more studies done in the past 14 years, but this was a random sampling of those I might not already have read, and I also chose not to print out many that were over 7 years old, as so much information about PMDD has changed since 2007. 
Of the 2001-2005 studies, I printed only those that might be of use in my research.  A list of titles appears below.  And yes, I do intend to read each study listed, and share with you in plain language anything that seems relevant.  But first I want to point out that in the scientific community, the problem is not awareness.  Scientists are well aware of PMDD and for what looks like mixed reasons.   An analysis of what those reasons might be will be the subject of a future post. 
For now I just want to repeat that awareness on a scientific level is not the problem.  Awareness in the medical community—short of misleading advertisements by drug companies—and awareness in our friends and families is.  Hopefully blogs like mine will help to rectify that situation for you and your loved ones. 
In the meantime, here is a list of the studies on PMDD I uncovered in less than two hours of searching.  If you think the list is dry reading, imagine reading the studies themselves :).  But like I said, it keeps my brain sharp. Not to mention I'm a total research geek and love it.
If you wish to read any of these studies yourself, you can Google the name provided.  I typed the titles exactly.   Just retype it yourself, or cut and paste the title into your browser.  These can all be found on the PubMed.gov site, which is part of the U.S.  National Library of Medicine, and the National Institutes of Health.  Many of them are abstracts, but you *can* find the full studies if you look hard enough.  Update: the first comment below tells you exactly how you can get copies of the full studies.
Enjoy!
2013
Comorbid bipolar disorder and PMDD: real patients, unanswered questions
Elevated gray matter volume of the emotional cerebellum in women with PMDD
Allopregnanolone serum concentrations and diurnal cortisol secretion in women with PMDD
Examination of premenstrual symptoms as a risk factor for depression in postpartum women
Luteal serum BDNF and HSP70 levels in women with PMDD
PMS and PMDD among Jordanian women
Circulating insulin and leptin in women with and without PMDD in the menstrual cycle
Abnormalities of dorsolateral prefrontal function in women with PMDD; a multimodal neuroimaging study
Lamotrigine augmentation in PMDD : a case report 
Depressive mood and frontal alpha asymmetry during the luteal phase in PMDD
PMDD and severe premenstrual syndrome in adolescents
Selective serotonin reuptake inhibitors for PMS

Premenstrual disorders and rumination
Anger in women with PMDD: Its relations with PMDD and sociodemographic and clinical variables
Non contraceptive benefits of oral hormonal contraceptives
Premenstrual symptoms and posttraumatic stress disorder in Japanese high school students 9 months 
after the great East-Japan earthquake
Personal history of major depression may put women at risk for premenstrual dysphoric symptomatology
A review of treatment and management modalities for PMDD
Biopsychosocial aspects of premenstrual syndrome and premenstrual dysphoric disorder
2012
Pilot investigation of the circadian plasma melatonin rhythm across the menstrual cycle in a small group of women with PMDD
Bipolar disorder and PMS or PMDD comorbidity: a systemic review
Survey of premenstrual symptom severity and impairment in Korean adolescents; PMDD subthreshold PMDD and PMS
Intercountry assessment of the impact of severe PMDD on work and daily activities
2011
Work stress, PMS and PMDD are there any associations?
Lifetime discrimination associated with greater likelihood of PMDD
Posttraumatic stress disorder and trauma characteristics of PMDD
Reduced Phase-Advance of Plasma Melatonin after bright morning lithe in the luteal, but not follicular menstrual cycle phase in PMDD: An extended study
Exposure to American culture is associated with PMDD among ethnic minority women
Health advantage for black women: patterns in PMDD
2010
Histories of major depression and PMDD: evidence for phenotypic differences
Neuroticism related personality traits are related to symptom severity in patients with PMDD and to the serotonin transporter gene-linked polymorphism 5HTTPLPR
Predicting response to leuprolide of women with PMDD by daily mood rating dynamics
Estrogen receptor alpha (ESR-1) association with psychological traits in women with PMDD and controls
Increased sensitivity to light-induced melatonin suppression in PMDD
Prefrontal brain asymmetry and PMDD symptomatology
Explorative evaluation of the impact of severe PMDD on work absenteeism and productivity
2009
Safety, efficacy, actions and patient acceptability of (Yaz) contraceptive pills in the treatment of PMDD
2005
Lack of beneficial effects of clonidine in the treatment of PMDD: results of a double blind, randomized study
Histories of sexual abuse are associated with differential effects of clonidine on autonomic function in women wit PMDD
2004
Historic sexual abuse and current thyroid axis profiles in women with PMDD
2003
The prevalence, impairment, impact and burden of PMDD
Biological correlates of abuse in women with PMDD and healthy controls
2002
Prevalence, incidence and stability of PMDD in the community
Prevalence and predictors of PMDD in older premenopausal women. The Harvard Study of Moods and Cycles
2001
Characteristics of women with PMDD who did or did not report a history of depression: a preliminary report from the Harvard Study of Moods and Cycles
Allopregnanolone levels and reactivity to mental stress in PMDD

Sunday, January 12, 2014

The Four Seasons of PMDD

I know I mentioned this in my last post as a real treat to find, but I want to spend a little more time on WHY I think the 34-page free PDF called Let's go menstrual! by Miranda Gray is so amazing.  For one, it treats our menstrual cycles as something to be welcomed and honored and worked with, not cursed and concealed and ashamed of. Something that can be used as a positive force in our lives. 
We all know that with PMDD we feel differently on different days.  This booklet shows you in simple, easy to understand terms, how to make the most of your good days, and even how to make the most of your bad days. 
So I encourage you to use this booklet to raise your awareness of the different *seasons* of your monthly cycle, and to tailor your expectations to match what is naturally going on in your body during any one of these four seasons.  In the end you will learn how to better meet your own mental, physical, emotional, and spiritual needs, and doing this will help you to feel good about yourself.   In particular, the author says (and I heartily agree), you will feel more:
Comfortable with (and in) your own body
In control because you know WHY you are feeling the way you do
Confident in your abilities (as long as they are tailored to your moods or seasons)
Empowered to created positive feelings about yourself
Now what PMDD woman couldn't use a little more comfort, control, confidence, and empowerment?  Tell me what woman anywhere couldn't use a few more positive feelings about herself? 
PMDD women in particular need to read the section about the Autumn/Fall of our cycles, the problem-finding (and solving!) portion of our cycle, where the booklet tells us we can feel the need to "clear out our (mental, physical, emotional and spiritual) rubbish, to curl up alone, and to sleep more."
Ms. Gray then tells us the Winter Phase is a time when we tend to reflect on the year (or cycle) just over, daydream about the future, what we want to do in the year ahead, and commit to our new resolutions.  It's a time of rest, relaxation, and meditation, among other things.  I personally use it to curl up in my big cozy chair and catch up on my reading.  
Do not miss the list of suggestions for your Winter Phase, which coincides with the time of your bleeding.
Of course, the Spring and Summer Phases have equally invaluable lists of characteristics and suggestions for maximizing your well-being.  The suggestion I liked best for the Spring Phase, (when we are full of confidence and are our normal, non-PMDD selves) is to "Use your self-confidence to do something different from your usual routine."
That's right, the time to take on something new and unfamiliar is your Spring phase.  But the KEY to success is to only work on that project in your Spring Phase.  Set it aside when Fall and Winter come.  Do not let the innate negative energy and thoughts that those seasons bring to you undo all the positivity you have created in your Spring and Summer seasons.  Both Spring and Summer will come around again (that's the beauty of cycles), and there is no harm in working toward your strengths.
Use your Spring and Summer seasons to discover just what those strengths are.  The booklet even tells us what to watch out for in these highly positive and productive seasons, such as doing too many things at once, or doing too much for others, and ignoring our own needs.
Ms. Gray also tells us that Summer is the best time in our cycles to be sociable and work on relationships.  But also to be wary of wishing we could be this light and cheerful and confident forever.
Then, in the Fall and Winter seasons, we are to (among many other things) focus on NOT BELIEVING the negativity in our minds, and not to try to maintain a Spring or Summer schedule when our body is crying out for some rest and relaxation. 
We need this rest and relaxation to prepare us for the renewal that comes with Spring. 
So, to recap: 
Cycle Days 1-6 are your Winter Phase (rest, relaxation, take care of yourself)
Cycle Days 7-13 constitute Spring (a time of renewal, rebirth, and creative energy)
Cycle Days 14-20 should be your social and sharing Summer phase;  (but is often where the problems begin in PMDD women instead); and
Cycle Days 21-Day 1 (first day of bleeding) is your Autumn/Fall phase (when PMDD strikes the hardest)
For more information, please visit www.optimizedwoman.com.  There is a newsletter you can sign up for, and all sorts of good articles there, on how to increase your awareness of your body and its cycles. 

Thursday, January 31, 2013

Are Oral Contraceptives Really the Answer for PMDD?



Is Levora® making your PMDD worse?  We're going to take a little side trip today, because in the past month alone I've had over 100 requests for information on this subject.  According to information provided by the website Drugs.com, it's possible.
Levora® is a combination drug that contains female hormones that prevent ovulation and also causes changes in your cervical mucus and uterine lining, making it harder for sperm to reach the uterus and harder for a fertilized egg to attach to the uterus. It's primarily used as an oral contraceptive that provides 21 active white tablets and 7 inactive peach tablets.  The tablets contain levonogestrel (a totally synthetic progestogen) and ethinyl estradiol (a synthetic estrogen).  Inactive ingredients in the pills include FD&C Yellow No.6 (which may contain aluminum) and three forms of lactose.
For more specific information on patient-reported Levora side effects, go to: the Rate a Drug site
It should also be noted that continuous combined birth control formulas (such as the one found in Levora®), as opposed to sequentially-based hormone regimens that mimic the natural female cycle, have also been shown to frequently lower a woman's sex drive.
According to Dr. Winnifred B. Cutler, in her book, Hormones and Your Health, a test on monkeys showed that the combination of ethinyl estradiol and levonogestrel (the combination in Levora®) caused large elevations in the stress hormone cortisol, as well as great increases in their heart rates.  Rising rates of cortisol, among other things, messes with your metabolism, causes you to gain weight and suppresses your normal immune functions, leaving you susceptible to every cold and flu that comes your way.  In time your body can get so run down that you develop something serious, even terminal.
For instance, Dr. Cutler also recommends that women avoid ethinyl estradiol after age 45 because it also increases the risk of having a stroke.  In fact, she recommends that (no matter what your age) you have your triglycerides and CRP (C-reactive proteins) checked (via blood tests) if you start ANY oral estrogens at three and/or six months after you start taking them.  You will need to switch hormone regimens if your CRP or triglycerides rise, as rising levels of either of these is predictive of heart disease, even more so than rising levels of LDL (aka the bad) cholesterol. 
No matter what form of oral contraceptive you may be taking, I urge you to find out what exactly is in it, and if it is a continuous formula or a sequential one.  This will go a long way in determining which side effects may or may not apply to you.  Besides, it's just plain smart to know what you're putting into your body.  For instance, if you're having trouble thinking and remembering things, it might be due to the ethinyl estradiol in your hormone pills.  "Estrogen like" as in synthetic estrogens, is not the same as bioidentical estrogen.  Far from it.  Each will have a different impact on your thinking processes.
The rest of the information that follows seems to be the standard patient information for all oral contraceptives, which include Levora®, but may or may not be specific to Levora®.  Still, I looked up the medical terminology you find in your patient information packets, and translated them into everyday words we can understand.
That said, you should not take any combination birth control pills if you have high blood pressure, heart disease, a blood-clotting disorder, circulation problems, diabetes, pre-diabetes, unusual vaginal bleeding, liver disease or liver cancer, jaundice caused by birth control pills, a heart attack, stroke, or blood clot.  Note that there is the possibility of a risk of heart disease even in very young women who take oral contraceptives.  So if you are young, don't go around thinking you're invincible. While a cause and effect relationship has not been scientifically established, some studies have also reported an increased relative risk of developing breast cancer, particularly at a younger age.  This increased risk appears to be related to how long you take the pills.  The risk for benign liver tumors increases after four or more years of use.  (Death can occur if a tumor ruptures.)  Studies have also shown an increased risk of developing liver cancer in long term (greater than 8 years) use of oral contraceptives.
You should discontinue use of your oral contraceptive if you experience unexplained or complete loss of vision, bulging eyes, swelling of the optic nerve, or lesions (scars, bumps, bubbles) in your retinal veins.
Also, be aware that cigarette smoking increases the risk of serious cardiovascular side effects from oral contraceptive use.  This risk increases with age and with heavy smoking (15 or more cigarettes per day). 
Still, if you use oral contraceptives, you should not smoke.  Period.  If you are looking for a way to go off the pill, please check out this website. 
If you do smoke while taking oral contraceptives, some nasty things that can happen include heart attack, blood clots (in the lungs and legs), stroke, liver tumors, and gallbladder disease.  The risk increases significantly if you already have high blood pressure, high cholesterol, diabetes, and/or are obese.  Obesity is defined as having a body mass index of more than 30.  You can figure out your BMI here.  
Oral contraceptives have also been shown to cause glucose intolerance in a significant percentage of users.  Oral contraceptives containing greater than 75 mcg of estrogen (which Levora® does) can cause abnormally high levels of insulin. People with too much insulin have frequent episodes of low blood sugar (hypoglycemia). These episodes can be characterized by a lack of energy (lethargy) and/or irritability. Repeated episodes of low blood sugar increase the risk for serious complications such as seizures, intellectual disability, breathing difficulties, and coma.
Lower doses of estrogen cause less glucose intolerance, but the progestogens in your oral contraceptive can also increase insulin secretion and create insulin resistance.  Therefore pre-diabetic and diabetic women should be especially careful while taking oral contraception.  Talk with your doctor frequently. 
The incidence of high blood pressure also increases with increasing concentrations of progestogens.  Women with a history of high blood pressure or high blood pressure-related diseases, as well as kidney disease, should use another method of contraception.
If you start to get migraines, or your migraines become more severe, stop taking oral contraception until you determine the cause.
When taking any oral contraceptive, you should follow up regularly with your doctor.  You need to pay special attention to your blood pressure, breasts, abdomen and pelvic organs, including pap smears.   Women--especially younger women--with a strong family history of breast cancer should think twice about taking oral contraceptives.
Birth control pills can also be a problem if you have varicose veins, a history of depression, an underactive thyroid, seizures or epilepsy, and/or a history of fibrocystic breast disease, lumps, nodules, or an abnormal mammogram.
As with any drug, you could have an allergic reaction to Levora®.
If any of these adverse effects occurs while you are taking oral contraceptives, call your doctor immediately:

·        Sharp chest pain, coughing of blood or sudden shortness of breath (indicating a possible clot in the lung)

·        Pain in the calf (indicating a possible clot in the leg)

·        Crushing chest pain or heaviness in the chest (indicating a possible heart attack)

·        Sudden severe headache or vomiting, dizziness or fainting, disturbances of vision or speech, weakness or numbness in an arm or leg (indicating a possible stroke)

·        Sudden partial or complete loss of vision (indicating a possible clot in the eye)

·        Breast lumps (indicating possible breast cancer or fibrocystic disease of the breast: ask your doctor or health care provider to show you how to examine your breasts)

·        Severe pain or tenderness in the stomach area (indicating a possible ruptured liver tumor)

·        Difficulty in sleeping, weakness, lack of energy, fatigue or change in mood (possibly indicating severe depression)

       Jaundice or a yellowing of the skin or eyeballs, accompanied frequently by fever, fatigue, loss of appetite, dark-colored urine or light-colored bowel movements (indicating possible liver problems)
It's the references to depression and anxiety that concern and confuse me.  Why would a doctor prescribe something for your PMDD when it could cause more of the very same symptoms you already have?  Plus increase your chances of developing heart disease, among other things.
Side effects they don't consider serious (but you might) include:
Increased blood pressure
Mild nausea
Breast tenderness or swelling, nipple discharge
Freckles or darkening of facial skin, increased bodily hair growth, loss of scalp hair
Rashes
Changes in weight or appetite
Fluid retention, particularly in the fingers and ankles
Problems with contact lenses
Headache
Anxiety
Dizziness
Vaginal itching or discharge
and
Decreased sex drive
And this is not a complete list of side effects.
Special note:  Certain drugs can make birth control pills less effective:  These include Phenobarbital and other barbituates, seizure medications, and St. John's Wort, which many PMDD women use to counter their depression.  So beware if you are self-medicating with St. John's Wort.
In all, there doesn't seem to be a lot of scientific information on the internet specifically about Levora® making your PMDD symptoms worse...which is probably why people are looking for it.  I hope this post has answered some of your questions, or at least pointed you in the right direction for the answers you seek. 
That done, I need to get on my personal bandwagon and ask you to reconsider using birth control to treat your PMDD.  Is the increased risk of heart disease, the number one killer of women, worth the risk of masking your PMDD symptoms for a few years?  Think about this.  Just because fertility and PMDD both involve hormones does not mean the medications for them are interchangeable.  That's like throwing something against a wall to see if it sticks.  A good naturopath or nurse practitioner should be able to help you come up with a hormone regimen individualized for your needs and your body. 
The problem with PMDD begins at ovulation.  Did you know bioidentical estrogen in high enough doses can prevent ovulation?  Without all the unpleasant side effects listed above.
I'm not recommending bioidentical estrogen as birth control, but to help manage your PMDD in a positive and healthy way?  It's certainly worth a shot.  Especially if you're in peri-menopause.
Of course you can't take unopposed estrogen in any form without adding back some progesterone, but again, with the right medical supervision, you can work out a regimen that best suits your body and needs and lifestyle.  That best suits YOU.  Rather than the one-size-fits-all mentality that prevails in the marketplace now.   
Don't you deserve to be treated as the individual that you are?