Chiari Online Support Group

Missin Period

Hi, I’m new to the site, and I saw a question similar to this one, but not exactly the same. When I was 15, my period went away and it hasn’t come back since then, I’m 18 now. At 16, I went to a specialist to get that issue checked out and my TSH levels Indicated hyperthyroidism ( I was also losing a ton of weight), and both my lh and fsh were high (post menopausal range). We’ve done every thyroid and autoimmune test possible and can’t find anything. My Pcp sent me to get and MRI of the pituitary to check for a tumor and that’s how we found the Chiari (I did have other symptoms of chiari like horrible headaches, vertigo, nausea, palpitations, etc). Now, I’m having other endocrine issues and I’m looking to see if anyone else has been struggling with menstrual issues and other hormonal problems. Can it be related to the chiari? Have you ever heard of this? I can’t find any Info about this online either

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I’ve had issues with my period for years. It never went away for as long as yours has, but it went away for a full year and had been irregular since. I don’t know if it’s as much related to Chiari as it is to some of the co-morbid conditions found to come with chiari. Have you been tested for Ehlers Danlos, POTS or Mast Cell Activation?

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No , I haven’t. I honestly haven’t even seen a true chiari specialist yet. Where could I go to get those tests done?

whilst researching my findings on my own MRI images I literally just read tonight that in Chiari patients the pituitary gland can get crushed if there is retroflexed odontoid and/or basilar invagination.
The Pituitory gland plays a key roll in Menstruation so maybe your specialist was correct in the first place

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Chiari can be diagnosed by an MRI of brain.
Not sure where you are but normally a GP can refer you for a scan.
Or if you have money to speed things up you can pay to have one in a private hospital.

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Dear natoirana,

Tats is so right - the pituatary gland in the brain can reek havoc with your hormones and stuff when that master gland gets the SQUISH from Chiaris. I had a similar situation as yours - except several decades down the road. My period shut down completely when I turned 46 - but I didn’t think much of it 'cuz of ‘that time of life.’ (menopause, etc.) However, Chiaris was in the process of shutting me down entirely at that time. I went 10-years close to total paralysis, agony, and brain-deadness - until I was diagnosed correctly in 2012 -and had the decompression surgery.

THEN… four months after my surgery, I began to get hot flashes with a vengeance!!! Oh, GOOD GRIEF! :thinking: It was the worst nightmare ever! Every 20 minutes, I would get violently ill with gushing sweat - and just the worst horrible feeling that went on for 5-10 minutes. It was my neurosurgeon who told me that my menopause - which had been stifled by the Chiaris - was now fully activated!!! However - he said that Chiaris may possibly have made the situation worse than normal. The damaged brain stem triggers a lot of things in your brain and body. Since my brain stem is permanently damaged from such a delayed diagnosis, it doesn’t work quite as well as it should. Therefore, my brain stem is OVER-activating my pituitary gland - which is why my menopause/ hot flush gunk is over-the-top! Fortunately, I am able to stop it in its tracks with estrogen patches. :roll_eyes:

Still! Last year, those estrogen patches were back-ordered, and I couldn’t get them anywhere! That’s when I found out that - five years post-surgery - my over-stimulated pituitary gland is STILL messed up! The 20-minute sizzling hot flashes started up immediately - making me so violently ill! Again - my neurosurgeon isn’t sure when - or if - it will stop! He doesn’t know how badly my brain has been messed up with the Chiaris. Sigh. We have a daily row to hoe. (That’s why it’s nice to have a site like this - where we can vent when it gets to be overwhelming!!!) :expressionless:

Beth, I am so sorry that you’re going through all of this , I feel your pain!! I also get hot flashes, I guess my body is going through an early or false menopause due to me having very little estrogen. I used to get them much more often and they were extremely intense as well. I think it could have been birth control that helped those stop. Will yours stop after your menopause period is over? Or Is your menopause prolonged? Stay strong!

Dear natoirana,

Whew! I’ve asked dozens of (mature) women how long their menopause gunk lasted - and the answers varied widely. My sister’s was all done in 3-years. Another lady who is well into her 60’s has had hers for over 20 years and is still going strong with horrible hot flashes - almost like hers is never going to end! My OB-GYN said menopause lasts 'three years." Well… I’m already into year six! And - shows no sign of stopping. If I delay the replacement of my Combipatch (estrogen/ progesteron mix) I can feel the ‘rumblings’ of hot flashes. I’ll start waking up in the middle of the night, all awash wish sweat. So, I know I’m pituitary gland isn’t done tormenting me YET! I really wonder - with Chiari’s messing the brain and CNS up so much, is there no normal for us!!! I hope your estrogen tablets provide you with some relief. That is so odd your body is creating a “false menopause.” :no_mouth:

I guess I shouldn’t be surprised. A year ago, when my Combipatch was backordered and unavailable, I had to try other topical estrogens. (I cannot take oral estrogen because I have liver damage from working overseas and picking up a 3rd world virus!!!) The topical estrogen was some kind of cream I was supposed to slather on twice a day. Creams are hard to control. Turned out, it was WAY too strong! I started to have periods again!!! I didn’t think that was possible - to rev the reproductive system back up! Who knew?