Hormonal changes and Hughes syndrome

[armywyfRN]

Has any of the ladies here experienced a "flare up" of symptoms with hormonal changes?

[MaryF Administrator]

Yes, horrendous ones, this has gone on since I was 12 and steadily got worse, I also have Lupus and three other things! I think this is fairly common with autoimmune! MaryF

[armywyfRN]

Oh my land! I can't imagine! I've always had the worst migraines after my cycle but I always said it was just hormonal but now...I would have to say it's both!

Feeling so thankful for this site!

[MaryF Administrator in reply to armywyfRN]

Probably...and thanks for feedback, we do our best to information share and help! I also get my worst migraines after any sort of travel, especially air, that is a Hughes thing definitely! MaryF

[Sal0712]

Hi, I have always suffered really bad migraines since the age of 14. I just thought it was one of those things and always took pain killers and waited for them to go (anything between 1&5 days). At the age of 17 I was put on the pill as I was having irregular periods, and it was thought that this might also help with the migraines. In September 2008 I came off the pill to try for a baby, and was lucky to be caught only two weeks later (after being told that I had poly cystic overy's, I would not be able to conceive). During pregnancy my migraines just seemed to stop, and I had no migrains until my daughter was around six months, and I started back on the pill. When my daughter was 10 months old back in May 2010 I had my worst ever experience! I started with what was initially diagnosed as a migraine, but it became progressively worse. I began vomiting and couldn't keep anything down. The GP tried a variety of different pain meds, but nothing was taking the pain away. The following day, and this is where things started to get hazy for me, my husband noticed I was forgetting things and that I wasn't recognising him or our daughter. He contacted the emergency services, and they told him I needed taking to A&E. After running various tests and doing a scan on my brain (after putting me into a drug induced coma), they found I had blood clots and a bleed on the brain. By this time I was serverly dehydrated, and as they transferred me from one hospital to another, I had a temperature fit. I was put into ICU and my family were told I had around 6 hrs to live. Obviously I put up a fight and wasn't ready to leave everyone behind!

After running various tests over the next few months, it was found I had APS, and that the changes in hormones with the pill and pregnancy was what triggered the violent episode. Looking back now all the signs were there, but like with so many others, without having a certain amount of symptoms, doctors couldn't piece everything together!

Sorry for the long winded reply, but it's hard to explain my experience without the details.

Hope this has answered your question x

[armywyfRN]

Oh my dear! Praising God for your presence. So sorry you had to endure such a tragedy. As I am learning more and more about Hughes, I am excited (to prove the ER docs wrong) yet terrified of a really bad flare up. I am currently working hard to locate a specialist. Looking back into things I had going on, I believe my previous health problems have been related to my Hughes syndrome but because docs didn't see any other manifestations they misdiagnosed my symptoms.

Good luck to you!

[GinaD]

It runs in my grandmother's Irish family -- all (or nearly all) of us female descendants have an estrogen dominance issue. We are talkative, passive/aggressive (except for me! Ha ha!) and have/had these periods from hell! I am thankfully past menopause now, but prior I could always expect both autoimmune AND transient diseases --- like colds and such -- to get much, much worse during certain times of the month.

One doctor, just prior to starting perimenopause, started me on a topical progesterone cream. And that stuff was wonderful! I had more energy, my thinking was clearer, and I had fewer headaches and random aches and pains.

Now that I am on the other side of all these hormonal fluctuations I feel as though I am actually younger and healthier then I was 20 years ago! Go figure!

[Holley]

Not sure if you consider this a flare up, but I get more nose bleeds and bruise more easily at that time of the month. My hematologist said there's definitely a connection between the hormone changes and my bleeding.

[APSdsntHaveMe]

yes thats why i had a hysterectomy at 33. havent had a flare since right after surgery almost a year ago