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Author Topic: Hello from the States!  (Read 1206 times)

flyingsquirrel

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Hello from the States!
« on: September 04, 2019, 05:51:00 PM »

I started getting a lot of out of the blue anxiety in 2017.  Late 2017 and early 2018, I started getting scary levels of depressed during my periods, though I'd be okay the rest of the month.  Tried 5-HTP in 2018 to see if that would help.  It didn't.  Then not long after I had a very traumatic experience that left me panicked, afraid, depressed, and anxious for a whole month.  But, I could sleep.  (I think this mental breakdown was coming anyway, but the event pushed me over the edge and made everything too much to handle.)

Well, after that month, things got better.  I still had some physical anxiety, and could get triggered now and then from the trauma just watching TV, but it wasn't so bad.  I was able to have fun again.  I could still SLEEP.  Until one day, in September 2018, I couldn't.  I had building insomnia, and anxious feelings.  My thoughts weren't anxious yet, but they would be within a few days.  My brain likes to analyze why I feel the way I do, which means digging up the worst thing it can think of and getting on a hamster wheel with it trying to resolve something that cannot possibly be resolved, in the hopes of making myself feel better.  And, of course, that thing was the 2018 traumatic event.  Great.

This last year has been hell.  I really wish I hadn't been traumatized while my hormones were swinging around in 2018.  It would have helped me cope better.  I would have been thinking of something far less scary, you know what I mean?

In the beginning, I would wake up after only a few hours of sleep with panic attacks.  Could not go back to sleep.  Heart palpitations started up, too.  By heart palipitations, I mean sitting in front of the TV and my heart rate suddenly jumping to the 80s, 90s, and even lower 100s for about 5 minutes, then going back down to the 60s or 70s.  My heart never does this in front of the doctor, of course.  Within two weeks of all this starting, my thyroid popped out of my neck.  For the first time, I had hope that I would be given magic medicine to make all of this go away.  But my blood work was really weird.  Normal TSH, somewhat high free T4.  Confused my GP.  Biopsy and ultrasound showed a benign multinodular goiter.  Within a month, my free T4 levels had dropped back down to be within normal range.

I was declared cured!  But my symptoms were still with me.  On top of it all, I had started having severe muscle weakness in my legs during my period and felt really feverish, but without actually running a fever.  For a whole week, I was throwing my jacket off, then putting it back on, over and over again, within quick succession.  I still couldn't sleep.  My body was so stressed that my leg started involuntarily twitching, often waking me up even earlier.  Or just doing it while I was watching TV.  I suggested to my GP that if it isn't my thyroid, could it be my lady hormones?  She said, "No way! You're too young!"  (I was 35 at the time.  I am now 36.)

I saw an endocrinologist in December, who confirmed that my thyroid was okay.  My thyroid still hurt on and off, though.  She said it's thyroiditis.  Like, an autoimmune attack on my thyroid, but my thyroid and pituitary gland are functioning normal.  She said the biopsy wouldn't cause that kind of nerve pain I was having.  I was told to see a cardiologist for the heart palpitations.

It was my podiatrist who helped me figure out that, yes, I just might be entering perimenopause at my age.  Especially a few months into all this, I was still feeling feverish and weak during my periods--and only during my periods.  It took a while to see the pattern.  Yes, they were hot flashes, and not some peek-a-boo hyperthyroidism.  Fun!

Anyway, she referred me to an OBGYN (and to a specific cardiologist just in case the heart palpitations were something else).  Finally, a referral that made sense!  Heart turned out to be okay.  I saw the OBGYN nurse practitioner.  She believed me!  She got some blood work done.  My FSH and everything else was in normal range.  She figures I'm not technically in perimenopause yet, especially since my periods are still regular, but she figures that my hormones are beginning to swing. (Personally, I figure it's perimenopause when you're getting hot flashes.  I don't care what their stupid test categories are.)  I got my first birth control pack.

Sadly, I've been on 4 birth control packs now.  Each time, the nurse makes me suffer on it for 2 months (with the exception of the first one).  It's eliminated my heart palpitations, the weakness in my legs, and the hot flashes.  But, the insomnia, anxiety, and depression are still really bad.  She started me on 10mcg estradiol with norethindrone acetate (progestin), and slowly raised it up to 30mcg estradiol.

Due to the two migraine auras I had while on the birth control, and the fact that this family of birth control isn't doing the job for me, she just switched me to a totally different family that is triphasic and has desogestrel instead of norethindrone acetate.  She told me that this kind of progestin would help me feel like I had more estradiol that I did.  Unfortunately, I'm doing worse on this one.  She lowered me a bit to 25 mcg estradiol.  I realized also when I looked up desogestrel on Google that it is a very, very potent progestin, and that there is nothing about it making anyone feel like they have more estradiol.  This pack is so awful it brought back my heart palpitations, and on the first night I couldn't even sleep at all.  Like, I couldn't even FALL ASLEEP.  And that was after an already hellish period week of interrupted sleep and heightened anxiety.  It was the last thing I needed.

Thankfully, I took up an offer my GP's nurse practitioner had made me a few months ago, and she put me on some Trazodone.  Without that, I wouldn't be sleeping at all right now.  (Yeah, I stopped seeing my GP.  I've oddly found the GP's nurse practitioner as more likely to refer me and be helpful.)

The first week of Trazodone was awesome!  I started sleeping more, but I also had the anxiety GO AWAY.  My brain felt like it was a floating balloon, totally on Cloud 9.  It felt different, but it was way better than how I had felt the past year.  Then the balloon popped and I was back to feeling anxious again.  I hate these hamster wheel thoughts and feeling down.  It's a bit better today, but...ugh.  I have to remind myself that at least I'm finally getting some sleep.

I did realize something though.  The week where I felt best on Trazodone...was the second week of the triphasic pack.  When I started feeling anxious and scared again, was about a day and a half after I started week three of the triphasic pack, which raised my desogestrel level.  Figures.

I think this is proof that I need more estradiol, not less.  Unfortunately, nobody in their right mind is going to put me on a 50mcg estradiol birth control pack.  Especially not with the two migraine auras I've had.  I still wish I could try and see, though.  Just even for a month, and see if that's the answer.  Oh well.

My OBGYN nurse practitioner already is thinking about switching me to patches to top me off because of the migraine auras.  (Risk of stroke goes up when you're having migraine auras.)  I'm rather scared, because something tells me I'm one of those oddball women who normally operates on a LOT of estradiol.  I doubt topping me off with some weak patch is going to get me sane again.

I did go to the local sleep disorder center the other week.  My endocrinologist actually bothered to refer me a couple of months ago, after I broke down crying in her office during my 6-month checkup visit asking her why I can't sleep.  I shouldn't have had to cry to get help!  And, I didn't even know there was such a thing as a sleep disorder center until then.

Anyway, the nurse practitioner at the sleep disorder center was really awesome.  But she also said something to me that made me very anxious.  That a lot of women entering perimenopause need to go on strong antidepressants.  She specifically mentioned Effexor.  I'm really scared of some of these drugs.  They sound so hard to get off of!  I felt brave enough starting Trazodone.  I don't want to add another one that might give me brain zaps if I need to come off of it.  Or worse, gives me brain zaps while still on it full dose because I suddenly developed a tolerance.

What should I do?  Are estradiol patches better?  Does that mean I'll end up with more estradiol in my system than I would with birth control because it's my natural ovaries' estradiol plus the patch estradiol?  Or will I end up with less and still be suffering?

As it is, I'm starting my placebo pill tomorrow, and I refuse to do a second month with the current birth control pack.  I've got some Maca capsules and some OTC estriol cream.  I know it sounds desperate, but hopefully it's enough to reboot my ovaries and keep the hot flashes at bay.  No point in being on a pill that gives me even worse insomnia than if I didn't take anything at all.

Anyway, thanks for listening to my introduction!  I'm so glad there are support groups for this.  I couldn't imagine living pre-Internet with nobody with similar experiences to talk to.
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Kathleen

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  • Posts: 4550
Re: Hello from the States!
« Reply #1 on: September 04, 2019, 06:28:32 PM »

Hello flyingsquirrel and welcome to the forum.

Many of us have been on a similar journey to you and it's beyond frustrating as well as exhausting so you have my sympathy.

 A daily newspaper here in the UK ran a series of articles about the menopause last week. It included one written by a Cell Biologist bemoaning the lack of research into the effects of declining  hormones at a cellular level and she thinks we would learn more and help more women if we had a better understanding of the whole process. It seems her interest was piqued when her menopause started and she realised how debilitating it can be!

You will find plenty  of support and sisterly love on this site and I'm sure one of the expert ladies will be along soon to answer your question.

Wishing you well.

K.

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jillydoll

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  • Posts: 1652
  • Hiya
Re: Hello from the States!
« Reply #2 on: September 04, 2019, 08:39:48 PM »

Hi Flyingsquirrel..
Just wanted to say..... :welcomemm:

Hang on in there, I'm sure someone will post pretty soon to help you out....
Keep posting to us, let us know how your getting on.

Good luck with everything, have a browse around, we have loads different threads....

Jd xx
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squeaker99

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Re: Hello from the States!
« Reply #3 on: September 05, 2019, 10:37:42 AM »

hi flying squirrel. Yes I can relate to the sleep issues. Had mine in Peri for 2-3 year on and off and it is very disabling. bad night = worry = bad night repeat!

So... I have seen countless GPs..anxiety therapist...CBT....very very reluctantly tried Anti Depressant (Sertaline.. Zooloft I think it is the the US)..had period when sleep is ' better' (3-4 months) then have bad night and bad cycle starts again.

So where I am now in terms of what helps and what I've figured out for me.

1. Yes it is hormones in Peri for me which cause it. But Anxiety about sleeping take it to a much worse place than I would have been 10 years ago.

2. For me the ADs didn't fix things -  I felt wired and anxious on it (Was on it for only 10 days though...).

3. I have found CBT (which I got through the NHS) and Mindfullness (Lots of Apps - Calm/Headspace - I would not push one over aonther... it is basically guided breathing and relaxation).  BUt you have to commit to it and do it every day for a minimum of 10 minutes I would say.

4. Exercise is key for me. I jog for 45 minutes most days now. I feel this burns off the anxiety/cortisol.

5. I don't eat much past 6:30pm at the latest...maybe just a banana / milk.

6. I have ditched caffeine after midday and rarely drink alcohol now.

7. No media - just books or TV at least an hour before bed. I now to a Mindfullness App or read a trashy book!

8. This is a weird one...I have recently started taking cold showers before bed. (First a cold flannel then I do one limb at a time!).
There was a TV programme on this reducing anxiety and I'm not sure if it is a placebo but it really seems to be helping. I get into bed nice and cool and the bed feel snug.

9. If I wake in the night (I was waking 1am/3am/5am before!) I just have my headphone ready and do a Sleep App. Or a read my Kindle. I don't stress about waking nearly as much.

10. I do not let myself worry about not sleeping during the day. I distract myself, keep busy and try and be physically and mentally tired before bed. I do sometimes have a nap in the afternoon (just 30 mins or so) . I know you are not ment to do this!

finally.....I decided one day to fight this. To put a plan in place and follow it and replace any negative thinking with positive thinking.
I got to a place I thought I would never improve without medication ( I have taken GP prescribed sleeping tablets for a short period a few times I get my body and mind back on track . I think for me this works as a short term , fall back measure).  But I know that you can greatly improve things by putting other things in place.

Good luck. With trial and error it is possible to beat this. Acceptance and positive thinking were part of the answer for me.... but it is the worse thing when you are in the middle of it.


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flyingsquirrel

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Re: Hello from the States!
« Reply #4 on: September 05, 2019, 06:10:05 PM »

Thanks, squeaker!  And to all!

I wish managing my anxiety was so simple.  Unfortunately, there's an underlying trauma.  I did see a therapist and got some CBT as well, but it really didn't help, because it doesn't "resolve" the worry over the trauma, and my brain wants to "resolve" it so it will feel better, even though I know it won't feel better.  And, especially, there's no "resolution" for it. It just is.  But my brain won't accept it because it feels down and sick.  So it spins around on a hamster wheel.  It's like having popup ads in my head all the time for dark, traumatizing thoughts.  Before all this hormonal stuff hit, I was able to cope with the trauma way better, able to still have fun and take my mind off of it.  Some triggering and sadness, but it wasn't all-consuming.  Now?  It's like it took over my life.  It's like my brain wants to "deal" with it, but no amount of dealing with it will help my brain feel better, and it's a vicious cycle.  The CBT apps don't really help.  It always comes right back.  The worst is when I start dreaming my worries/fears.

I'd tell you what it was that traumatized me so, but I don't want anyone here to read it and get traumatized themselves, given that I'm sure most of us here are probably struggling with a lack of serotonin and their own anxieties.  I don't want to add anything dark and scary to anyone else's plate.  I have other places I can go to talk about it.

Trazodone gave me relief for about a week.  It still helps me sleep, but the happy buzz that let me enjoy even basic things like music is gone again.  I'm thinking it's time to try the big antidepressants like Effexor, but I'm scared of the withdrawal symptoms, brain zaps, etc. if I need to switch down the road, not to mention any added anxiety/depression it might give me if it isn't a good match or just because there's a slump as it builds up in your system during the first few months.  Starting a powerful antidepressant is not a decision I make lightly.  But you said antidepressants didn't really help you much?  That's what I'm afraid of.  That I'll have this drug in my system that won't even help or will make things worse but will give me nasty withdrawal systems.

I'd love to take up more exercise.  But, I struggle with a lot of muscle weakness.  Climbing the stairs is hard today.  Crazy, I know.  Even a little bit of light weight lifting makes me overly sore to where I can hardly walk.  It's probably my current pill pack.  It brought the weakness back.  Prior pill packs were much better in that regards.  Also brought back my heart palpitations.  Ugh.  But still, the fatigue from the insomnia was making me very exercise intolerant.

What to do?  I wish I could get that initial Trazodone buzz back.  It was really nice.  I was enjoying MUSIC for the first time in a year.  Such a simple pleasure I once took for granted...

Sigh...

Thanks for the advice!  I'll have to consider the cold showers before bed.  Haha!  Maybe I should also just force myself to exercise more, even if I feel so weak and tired.
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squeaker99

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Re: Hello from the States!
« Reply #5 on: September 05, 2019, 07:12:55 PM »

Hi again. This is probably the last thing you need to hear but yes exercise was the thing that dragged me back from my lack of sleep mental churn. I was in this mental cycle - can't sleep/tired/stressed/just worry/google/worry etc then my GP said = get out and do some exercise, even if you feel you can't . He was right. I had so much pent up adrenaline in my system. Could you swim maybe/or cycle/or just walk and count. (I count down from 1000 when I go jogging to keep my mind busy). Yes music is a great healer and distracter. Put the radio on loud. I drove round listening to Bowie for half and hour and it shifted my mood.  The is an element with me of not ' giving in' to my mental worry loops, fighting them with the good stuff.  But when you are sleep deprived and hormonal it is very very difficult. The worst thing is being told to be positive by someone else!

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flyingsquirrel

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Re: Hello from the States!
« Reply #6 on: September 05, 2019, 10:44:23 PM »

Hi again. This is probably the last thing you need to hear but yes exercise was the thing that dragged me back from my lack of sleep mental churn. I was in this mental cycle - can't sleep/tired/stressed/just worry/google/worry etc then my GP said = get out and do some exercise, even if you feel you can't . He was right. I had so much pent up adrenaline in my system. Could you swim maybe/or cycle/or just walk and count. (I count down from 1000 when I go jogging to keep my mind busy). Yes music is a great healer and distracter. Put the radio on loud. I drove round listening to Bowie for half and hour and it shifted my mood.  The is an element with me of not ' giving in' to my mental worry loops, fighting them with the good stuff.  But when you are sleep deprived and hormonal it is very very difficult. The worst thing is being told to be positive by someone else!

OK, I will make an effort to drag my little manual stepper machine out every day and do at least that.  I do walk my dog several times a day.  So that's something.  But, obviously I must need more.  Thanks for the advice!
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