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Dysautonomia (Autonomic Dysfunction) Community
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Avatar universal

Anyone having issues with their menstrual cycle?

Hi,

This is the first time I have posted anything, I am hoping someone has some input. My daughter is 14 and was diagnosed with POTS last October, 2010 at the Mayo clinic in Rochester, MN.  She has been pretty much homebound since this began. She is currently taking a beta blocker (metoprolol). This has greatly improved the racing heart, dizziness, and fainting. She has many other symptoms such as blurred vision, hot an cold flashes, cold extremities, insomnia, migraines,nausea, vomiting, continuous menstrual bleeding and continuous cramping. I may have missed a couple more symptoms, there are so many! She has so much abdominal pain from her cycle that she is vomiting a lot. We have seen our GP and an OB/GYN and we have tried 3 different birth control pills to try and stop her period and also the DEPOT shot which so far has not helped.  Do any of you have this issue? And if so how are you treating it? Also they have her on percocet for her pain and it helped somewhat but now it doesn't help at all. She was only taking it at night hoping it would help her get some sleep. Any ideas? We really would like her to be able to start 9th grade this September but it is looking more and more like she will spend another year schooling at home. I would greatly appreciate any input you may have.  
12 Responses
Avatar universal
I don't know what to say about the menstrual cycle, sorry.  But I do think she needs to have a gastric emptying scan to be evaluated for gastroparesis (or slow emptying of the stomach) which is common in people with POTS and can cause nausea and vomiting.
1632539 tn?1456280218
I am 45 and going through peri menopause and have noticed that my SVT is worse with the hormonal changes. I would def look into it further. I am trying Bio Identical hormones and it has seemed to help some.
Avatar universal
I don't have an answer to your question but I wanted to let you know that I have a lot of sympathy for your daughter and your entire family. My 16yr daughter has dysautonomia from contacting mono. She has orthostatic intolerance & faints all the time. She has "drop attacks" meaning we have no signs that she's about to faint. She has a lot of POTS symptoms but not the tacycardia. She sees a specialist in Toledo, OH named Dr. Blair Grubb - I highly recommend seeing him although it could take a while. I also recommend a support group called dynakids.org.  You may already know about this. By any chance did your daughter become ill after a viral infection? Best of luck to your daughter. Everything I read says that our girls will get better. I try to remind myself of that every day but it's not easy.
875426 tn?1325532016
Yes- some ideas- if they haven't looked into it already, ask the doctor to check her iron and ferritin (iron stores) as iron deficiency in itself can cause tachycardia, so just imagine how it could be making her feel worse if she has having this problem, which is pretty common in menstruating females, especially when bleeding a lot like your daughter.  Another idea is to get an ultrasound to look for any cysts (a torqued one can be really painful and is an emergency- I had one) or different abnormalities that might be spotted.  If they don't see any, it's likely she has endometriosis, which can normally only be diagnosed via surgery.  Family researched depo-lupron, because that's what a surgeon wanted me to take post an emergency laporotomy, but it looked scary and was only a short term bad solution, so I refused (though took one shot later prior to complete hysterectomy I wound up having). Endometriosis can cause heavy, painful periods.  But also ask the gyn to test hormones like thyroid function, FSH, LH, etc..  Find out if your daughter is ovulating or not.  You might even want to see an ophthamologist and get a field of vision test, etc. for the blurred vision if it is happening not only related to the orthostatic intolerance.
Avatar universal
I'm so sorry to hear this about your daughter.  She is too young to be having all of these issues.  I can't imagine what the both of you are going through.  My son has a difficult illness and I know it can be just as painful on the parent.  So sorry.  

I wanted to tell you that I don't have POTS, but do have an autoimmune form of autonomic neuropathy although they can't identify it, it's still in the dysautonomia family. My blood pressure is erratic and will go from 84/56 to 127/80 from just sitting on the couch along with many more symptoms.  Anyhow within two months of developing this form of dysautonomia my menstrual cycles became very similar to your daughters.  I'm 47, but I have never had menstrual cycles like this.  I can actually feel much better when I'm not having them.  But the few days before, I get seriously ill and have had to call the ambulance on occasion from my blood pressure dropping so low from the pain and nausea.  I'm sensitive to supplements and medications of any type, so I can't take much.  They want to do the ablation surgery but I had a strange autonomic episode while doing an exam and the gynocologist had to call the amubulance because they thought it was a seizure.  So now they refuse to do surgery on me.  Anyhow, they gave me something to try, it's called Crinone, and it's supposed to lighten up my situation. They want me to try taking it during my cycle to see if it stops it.  It's a precription hormonal insert and like I said I'm sensitive to everything, so have not had the nerve to try it yet.  I don't know much about Crinone, but read good reviews online, but if BC pills are not helping your daughter that is really tough.  Have you tried an endocronologist who deals with hormones also?  

I also watched an episode of mystery diagnosis and the patient's menstrual cycle situation sounds quite similar to both your daughters reactions and mine.  The poor patient's endometriosis had gone up into other organs and every month it attacked her body.  They did surgery and that's where they found the endometriosis attached to several organs.  So I agree with Living Hope that it is a possibility. They said it is rare to have it as bad as this woman had it, but always possible and to much lesser degrees most of the time. I think the female had been having problems since she was a young girl.  IT is autoimmune but no blood test for it unfortunately.  Also, my doctor at the Mayo told me that with Dysautonomia, menstrual cycles can cause flare ups as well as fluctuating hormones.  And that has been the culprit of my situation but am praying for menopause.  But since your daughter is so young, I pray they can find a solution quickly.  Please let us know how she is doing.  I'm not a doctor and can mostly only sympathize.  Hang in there.  
Avatar universal
Hi there. I was just diagnosed last week at Mayo Clinic in Rochester, MN. My menstrual cycle has been all messed up since I begain having symptoms. So far my gyn workup has been normal and they suggested getting on bc control pills, although I know the cause is something to do with the ridiculousness going on in my body. I have not heard anyone mention ringing of the ears. Does anyone have this, it drives me INSANE. Good luck to you all:)
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