For the Ladies Only

[HangingByAThread]

Hello.  I was wondering if there is anyone else who suffers miserably right before their period (I'd especially like to hear from HYPER ladies or ladies with Inappropriate sinus tachycardia)?  Mine is coming any minute and, among other things, I have been plagued with extra adrenaline surges for days.  I get so hot (my usually low body temperature can a actually go up a couple of degrees).  Last night was the absolute worst!!! - if every night was like that, I honestly don’t think I could go on any more.  I had non-stop adrenaline rushes/rapid heart beats that went off every 30-60 seconds for about 7 HOURS.  They got even worse if I tried to lie down (mind you, I have my bed on an incline already and have ton of pillows to prop me up as sleeping supine is a no no).  It got so bad that I just had to sit totally upright in the bed (supported by all the pillows) and watched tv for hours in the dark, hoping to take my mind off of my body and hoping that I’d just eventually drift off to sleep.  All the while I'm hoping I don't wake up to a 10-15 minute debilitating episode of 150-175 bmp tachycardia (that happens about once a month around my period).  I think I finally was able to crash but it was about 2:30 in the morning and then I woke up at 6:00.  I called a car service to take me to work today because I don’t want to run out of sick time but I feel like I’ve left my brain behind in the bed.  I'm miserable, my head hurts and I’m extra clumsy (walking into things/tripping over my own feet), I forgot to put on half my make up before I left the house and I had no energy to make my lunch.  I’ll be 50 years old and pray every month that this will be my last period but my endo. runs tests every so often for the last few years and says that I’m nowhere near menopause.  Once I actually get my period for a day I’ll go back to the “normal” regular symptoms of IST and Hyper POTS so at least there is light at the end of the tunnel (however, the older I get, the worse these symptoms get).  My gyno. wanted to put me on birth control but we have several blood clotting issues in my family (and I could never tolerate the pill when I was younger).  I take Methyldopa in the morning and it helps dampen the adrenaline surges, but due to heart block during sleep I am only allowed to take it in the morning.  Is there anyone else in the same boat each month and, if so, how do you deal with it? 

[Bluebonnet08]

That sounds so awful.. I am sorry to hear you are going through this.  Yes, I experience terrible, terrible symptoms before my period.. it is like a nightmare.  Fortunately my HR doesn't go up to 150bpm anymore, but I get very severe symptoms before my cycle start.  I get saline IVs every two weeks now and it helps control my high heart rate.  

As for the other symptoms, I am still looking for some help.  I have tried the "Deep Sleep" herbal supplements for sleep around that time of the month, which help a little.  

I wish I could help more, but know you aren't alone.  Have you tried saline IVs?

[HangingByAThread]

Hi Bluebonnet08,

Thanks so much for your response.  Sorry you through a nightmare experience as well.  No, I've never tried saline IVs (other than the emergency ones I'd get if my blood pressure dropped too low (before I had my diagnosis and knew what I was dealing with) and I had to go to ER).  Unfortunately, it has been nearly impossible to find a specialist where I live.  I've been lucky enough to travel to Cleveland and Vanderbilt for the testing and initial meds but I'm just sort of winging it myself here (checking in with my endo. 4 times a year and my EP if I have a major cardiac episode).  I do pop some extra salt tablets and extra water before I get my period (because my blood pressure gets even lower than normal).  By the water retention I get during that time, I think that does help take the edge off a little.  I complained to my endocrinologist recently about how tight my ring gets and packing on 10 pounds and he just looked at me with a smile and said "it's water retention - that's exactly what you want"

[JaneTX]

Hi!  I'm new to DINET, so pardon me if I make any newbie comments.  My daughter was diagnosed with Dysautonomia over a year ago, but had some other seemingly unrelated medical issues (Celiac diagnosis and gallbladder removal) and the Dysautonomia diagnosis kinda fell off the radar.  Her symptoms don't seem "typical" that I've read about, no POTS but very hormonal - her periods have stopped, 4 months ago normal thyroid, last month low cortisol and ACTH, now normal cortisol and ACTH and suddenly high TSH and Prolactin.  I have been furiously researching hormones (and still know very little).  But she's on Propranolol, which is a beta blocker, and what I've read beta blockers block the effects of adrenaline, thus calming down the heart.  I had been researching secondary and tertiary adrenal insufficiency and I also ran across an interesting publication that discusses how low cortisol can "unmask" adrenaline (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC22067/).  Also important is that both cortisol and ACTH be measured together (output as well as input), seems doctors frequently look just at one and simply guess about the other.  Right now she suddenly is needing a lot of salt and drinking a lot of water and I'm now looking into the term hypovolemia.  (I'm basically a 3 year old - why, why, why!)  I'm wondering if low blood volume or some sort of sodium dysregulation is starving her hypothalamus and pituitary and thyroid.  Just some thoughts.