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[EmilyBee]

Hi there,

My symptoms started about 8 months ago (I'm 46 years old) and I'm having really hard time.  It took a while to figure out that this was perimenopause.  I went through a period of about 4 months where I was sure something was terribly wrong with me-- cardiac, pulmonary, cancer, something.  I even went to urgent care to get an ECG at one point, because I was sure something bad was happening.  I went to a couple of doctors and was diagnosed with costochondritis (at that point my chief complaint was weird chest pain that moved around and just a general feeling of not being well), as well as anxiety and advised to see a therapist.  One of the docs did a complete medical history and never mentioned peri.  I started to suspect on my own and it sort of hit me over the course of a week when I was starting to have many "episodes" a day-- at that point I was keeping a diary of my symptoms, to look for patterns.  I was at the grocery store with one of my young sons and one of these "episodes" came over me (a tension in my chest, followed by a weird feeling in my head and a feeling like I need to sit down-- not out of dizziness but just from not feeling myself).  I realized that the feeling I was having was almost "pharmaceutical"-- like I was being flooded with some kind of drug or a reaction to a drug. Around this time I was also beginning to get horrible night sweats.  That's when I had the epiphany that maybe this was hormonal and maybe these episodes were "hot flashes" or at least MY experience of a hot flash.  It all started to fall into place and when I looked at my symptom diary it seemed so obvious in retrospect.  I didn't suspect it before because I was basing my expectations of "hot flashes" and perimenopause in general on what I'd seen depicted in media, which always just shows a woman sweating.  That didn't fit with the scary chest feelings and anxiety I was having, and my "hot flashes" weren't about pouring buckets of sweat.  I've always been a person who is freezing even in the summer, so I realized that maybe what most people experience as overheating, I was actually experiencing as being warm for the first time in my life -- for the first time ever I wasn't feeling like I had to bundle up or turn up the heat in my house when everyone else is fine.  I *was* having buckets of sweat at night though-- I started to wake up like clockwork at 3 or 4 am every morning with soaked sheets and pajamas. 

I made an appointment with my OB/GYN and she said it sure sounded like peri and that she could prescribe me a low-dose BCP just to see if that alleviated any of my symptoms and if it did, that would basically confirm it and I could then decide to continue with them or tough it out without (I'm a bit leery of hormone replacement as my mother was one of those very unfortunate women to develop terminal breast cancer that may have been linked to her HRT back in the early days of its widespread usage.  I may need to reevaluate my feelings on this.)

The BCP seem to help a little bit, but lately my symptoms have been getting stronger again, and the week of the "sugar pill" is usually hell with full-blown symptoms-- especially night sweats, weird chest feelings, HORRIBLE anxiety that keeps me up at night.  I've given up all but one cup of coffee per day (I used to be a coffee fiend-- I rely on it to make it through my day with a good attitude, but lately the chest pain is not worth it and I think the caffeine really makes that worse) and I've recently given up all alcohol as well.  When these symptoms first started, a glass of wine at night was one of the only things that would help ease my frantic anxious racing thoughts, but lately it seems like any alcohol at all just makes the anxiety worse (which has never happened to me before).  I don't enjoy any of the comfort foods I used to and lots of things seem to give me headaches now.  I feel deflated and worried all the time.  I am seeing a therapist, and that helps, and she's working with me to develop skills for coping with my anxiety, but there are days when it's overwhelming and I feel so much fear that I can barely stand it.  The health anxiety is terrible!

I have 3 young boys-- ages 6, 9, and 11, and one of them has special needs and I have to teach him myself at home, which is a full-time job.  My husband is not much help and I've always been the "manager" for the house and family.  Now I just feel like I want to crawl into bed and hide, but that just brings on the anxiety.  As horrible as it feels to slog through my work day and try to put on a capable face for my kids' sake, at least while I'm engaged with them I'm more distracted from my anxiety.  The anxiety is at its very worst at night when nothing can distract me.  I've had awful nights where it was so bad, I had to get out of bed at 1am and get on the stationary exercise bike and ride vigorously for 20 min just to prove to myself that I'm not having a heart attack, and to "reboot" by brain.

The intensity of this experience has taken me completely by surprise.  My mother is dead, so it's too late to ask her about her experience, but she never once even mentioned perimenopause symptoms to me, so I have no idea how bad it was for her-- but as I know she was on the HRT until her her cancer diagnosis, I'm guessing it must have been bad enough.  It bothers me that this can come as such a shock to so many of us-- that it's not generally known how debilitating it can be, both physically and mentally.  I feel very little support from the medical community, because this is a "normal" process.  I'm grateful that communities like this one exist, because reading other people's experiences that are so similar to mine do give me comfort that it's not just ME and that as bad as this is, it is indeed just part of the process and I'm not dying (yet).

Hugs to you all.

(I am in the United States, BTW.  I gather that most here are in the U.K.?)

[Kathleen]

Hello EmilyBee and welcome to the forum.


Your story will resonate with many of the ladies on this site including  the part about lack of knowledge amongst medics and the population in general. Like you I thought the menopause consisted mainly of hot flushes/flashes and sweating but they have been my mildest symptoms.

This site was established by a Consultant Gynecologist ( a very senior and experienced  medical doctor ) and is based in the UK but is open to women everywhere.  One positive from this time in our lives is the reminder that sometimes we all struggle with the human condition and more things unite us than divide us.  We are in a sisterhood of sorts and the help and support we offer each other is precious.

Wishing you well and keep posting.

K.

[sheila99]

Yes, the lack of awareness is just as bad in the UK. My symptoms were anxiety, poor sleep, brain fog and overwhelming tiredness. I am also a cold person & my version of hot flushes is an over-reaction to an external sourse of heat (cup of tea, sitting by fire, hot water bottle at night). Two different GPs never mentioned meno and after 18 months I finally worked it out for myself, but only because various celebs talked about their symptoms on TV. My mother is also dead, she spent 2 years bed-ridden from a botched cystitis op which I suspect now was vaginal atrophy.  She went through it in the 70s when I suspect things were even worse. I have found this forum very supportive and far more knowledgeable than my GP.
 
 

[Daisydot]

Hi EmilyBee 
You've done well getting to the stage your at on your own and I think that's the case for an awful lot of us,in many cases it's been intelligent guesswork that's got us to a place where we've desperately been seeking out more answers to convince ourselves it's not “all in our heads” as a lot of these medics would like us to think.
Our Dr Currie has did us a bigger service than we could ever hope to thank her for by initiating this forum and providing us with a platform to air our worries and concerns and seek the help and advice from fellow sufferers that we've all so desperately needed.I for one will never forget her for that and I know most if not all of our other ladies here think the same.
Keep posting and asking questions you won't always get answers right away for various reasons,could be we just don't know the answers or maybe work/home/family commitments keep us busy but at some stage someone will help you to the best of their ability,we are not experts just fellow mm members with differing experiences.you will thoroughly enjoy this forum they're a great bunch,good luck xx

[jillydoll]

I totally understsnd what youre going through. I had the worst time of my life. Thought i was going crazy. There is light at the end of the tunnel. Youve just got to see it. It takes time some longer than others but youll get there.keep posting ans asking questions. Good luck honey.x jdx

[Dancinggirl]

Hi and welcome to mm Emilybee

As others have said, what you are experiencing is not untypical when peri meno hits. Nobody prepares us us for this stage in our lives and it can have a devastating effect on our quality of life - so you are not alone. I have a special needs son so I can relate to the pressures you are under. You have been very proactive and done all the right things but it sounds to me as though you are now getting deeper into the peri stage and possibly need proper hrt. I would pop back to your gynae for further tests and discuss options. If you still need contraception (which I suspect you do) then either one of the newer types if BCP (Qlaira) might be a good option or have a Mirena fitted and start adding in some oestrigen as gel, patch or pills to balance everthing better.
You have a lot I your plate so you need the hormone side of things sorted to get you through. Anxiety is challenging to control so the therapy with lots of relaxation techniques will be vital - I know from personal experience.
There are many experi need ladies in this site who can offer support so do tap into this and keep posting. DG x
Can I just ask why you are teaching your special needs son at home? I know what a fight it can be to get appropriate education and help for special needs children but I do wonder if there is some help out there for you to reduce the stress and allow you more time to be the relaxed mum I'm sure you want to be for your boys.
Do keep posting - there are many ladies on this forum with all sorts of life experience who may be able to offer advice. DG x

[AG]

Hi

Yes, I was also not aware that symptoms can get this challenging at times. I am 48 and suspecting in later peri menopause (hopefully). Being chilled instead of too hot, strange anxiety I never had before, and with hormone fluctuations my blood pressure also went up at times. Also complete exhaustion and sleeping issues and just feeling awful. The only thing I was aware of related to menopause was the hot flushes and I initially suspected something was wrong with my heart as I am a long distance runner. But heart is all fine (ECG confirmed this). But I have recently "perked up" again and one thing that does help is exercise. Brisk walking can be a good thing to do even if one feels tired at times. I can luckily walk to and from work. I do hope you will get better and all the best. Anna

[EmilyBee]

Thank you so much everyone for your responses and support.  I got all teary-eyed reading through them.  It means so much just to know that there are people out there who "get it".

I just finished a very horrible week of symptoms-- I've been on BCP for symptoms for about 5 months now and at first they helped a lot, but lately not as much, and the "sugar pill" week they come back with a vengeance.  At least I know it's coming, so I can try to mentally prepare and remind myself that it's "just" the hormones and I'm not dying or anything.  But boy was it rough.  I'm feeling that I may need something more than these low-dose BCP, or maybe I'll get more used to the routine of it; I don't know.  I can't imagine if I'd had anything really important or travel to do last week though.  I feel I would have had to cancel.  Luckily we are wrapping up a school year right now (only 3 days to go) and so the kids don't have any more homework or stress to deal with.  I'm hoping summertime will give me a chance to figure out some better strategies to cope with all this, especially the anxiety. 

I'd be interested to hear from other ladies who have tried low-dose BCP for perimenopausal symptoms... can anyone suggest the best place on the forum to ask about that?

Sheila99 -- nice to hear that I'm not the only one who experiences hot flashes/flushes as more of a sensitivity to warmth, rather than an all-out sweat, at least during the daytime (I do get the sweat at night).  At times I haven't even been sure I'm "flushed", just feel really warm, but then one of my kids will come hug me and exclaim "oh my gosh you're so hot!"  and sure enough their little hands feel like ice cubes against my skin.  So that sort of suggests that it's pretty noticeable!

Dancinggirl -- you were curious about why I homeschool my son.  Ha, I could write a novel-length book about that journey.  It wasn't my first choice and certainly not something I ever thought I would do.  But it wound up being the best thing for him.  The schools here in the U.S. are a real mess right now, and that's part of the problem (schools are forced to focus on test scores to secure funding), but the main problem was really that nobody was equipped to give my son the kind of education and support he needed.  He's incredibly gifted and needs advanced/challenging material, but his issues (Asperger's and OCD) make it very difficult for him to function in a stressful classroom.  I'm not sure if they use the term "2e" in the U.K.-- it's barely used here-- but it describes him pretty well.  "twice-exceptional", meaning he has the need for advanced materials beyond the norm on the one hand, but also accommodations for his social & emotional issues on the other.  This makes him a *very* difficult kid to accommodate in the classroom, and the teachers & staff, as well-meaning as they may be, (and not all of them are) just don't have the training or the flexibility to give him what he needs.  We tried hard to make it work, but it was a disaster.  It would be great if I could get some help with things, but it's financially not an option for us to hire full-time tutors and therapists, so we muddle through on our own (and we're doing a pretty good job-- it's just a lot of time and effort!). Luckily he's old enough and smart enough and into science, so that I can explain to him about my hormones and what's going on with me, so if I'm having a rough day he's very understanding-- I don't have to pretend everything is fine, like I tend to do with my younger kids.  He also has bad anxiety, so we are both learning together how to find strategies that work for us.  He's a great kid.   

[Dancinggirl]

Emilybee - it's tough here in the UK getting help for special needs but I'm sure it's tougher in the US. It's always down to finding.
Just one thought: you say your son is gifted ( which is not uncommon for Aspergers) - is he good with computers? I saw a programme about Microsoft and they nurture people with autistic spectrum disorders as they are often brilliant at programming ect. Bill Gates is a known philanthropist for children's issues so perhaps you could see if they have a programme your son?
Relieving some of the pressure in your life would make such a difference I'm sure. DG x

[EmilyBee]

Thanks Dancinggirl,

Yes I will definitely be looking into finding computer and/or science-related programs for him when we get a better handle on his OCD, and hopefully get him to audit some university courses.  The OCD is an even worse problem than the spectrum stuff because the OCD makes it very hard for him to work in groups or any kind of structured situation.  In homeschool, we can at least hit "pause" so to speak if he's having an anxiety attack and then return to work when he's calmed down, which is something that obviously won't work if you have to be somewhere at a specific time and focus for a set amount of time without interruption.  The spectrum stuff is more of a social-skills issue at this point, and not all of it is a negative-- his genius in science and math certainly comes from the same wiring that makes him seem odd to other children.

I'm on Day 2 of a new pill pack of my low-dose BCP and I feel better already.  I have to wonder if any of this is placebo, or if the hormones are really helping.  I wish we had access to Star Trek technology and could do a real-time scan of our hormones at any give time, to know what's actually going on.  My middle son asked me this morning why my face was so red, and I realized I was having a hot flash but didn't even know it until he pointed it out.  I take a shower in the morning and then make the kids' lunches before the 2 little ones head off to school, and in the past, I would be freezing after getting out of the shower and getting dressed, as it's pretty chilly in the morning where I live.  Now, after getting out of a hot shower, I hang onto that heat for at least an hour, and I make the lunches in the cold kitchen with wet hair and minimal clothing and I'm perfectly comfortable.  It's like my body is 5 degrees warmer most of the time, and hangs onto heat longer.  I do get "rebound" chills after a hot flash sometimes-- those were worse before I started the low-dose BCP.

[EmilyBee]

AG,

YES I find that exercise helps me too.  Especially with the anxiety.  Sometimes exercise is the *only* thing that helps me with the anxiety.  I've found that the advice given to women about anxiety (meditate, yoga, green tea, etc) doesn't do much for me, or maybe I'm just no good at quieting my head in general, even before perimenopause, and like everything else in life, it's a skill that requires a lot of practice before you're good at it.   I find that exercise-- even just 20 minutes of light cardio-- will go a long way to getting out of a manic brain loop.

I've read that many women find that the challenge of perimenopause and menopause basically forces them to make positive lifestyle changes that they should have made before, only now you can't get away with putting it off any longer.  That seems to be the case for me.  It's no longer a matter of "do I *want* to cut back on caffeine or give up alcohol" or "oh I really ought to exercise today".  These things have become imperative.

[paisley]

Hi Emilybee
Just wanted to say Hi & you are not alone. We all know what you are going through. I suffered tremendously in perimenopause & as you say the anxiety is horrendous. I still find it amazing that hormones can cause all this chaos. For me it was the mental problems I suffered with more, depression, anger & awful anxiety. I did get hot moments & dizzy spells. It must be hard & rewarding tutoring your son & things just feel harder when we feel off. Keep posting as it will help to clarify your concerns to know that other ladies have been through it too. Xx