Newly diagnosed in May 2012 (by an MRI for something else - they discovered chairi).
I've been on birth control since I was 24 (20 years). And the reason I bring this up - is because every other month (or so) during my 'off week' (pardon - period week).... I get a constant headache that lasts all week long. I take Excedrin - which helps take the edge off but its always 'in the background'. After a while, I get tired of taking Excedrin all week and have resorted to taking my husbands prescription meds for migraines (Fiorinal). That tends to take the headaches away.... and sometimes it comes back a couple days later. Eventually, it goes away......
I've always blamed it on the 'off week' - and it goes along with the territory of other symptoms (the women would understand). I'm wondering if its a combination of.....that and chairi headaches. Or..is it strictly from the monthly or strictly from chairi? I realize...this is probably something that you can't pinpoint either way. And I've asked my doctor if being on birth control for 20 years is a bad thing... they don't seem concerned and have given me options - I've just never pursued them.
The headaches are in the front part of my forehead and the sides (at my temples). The only other chair symptom that I get (that I know of), is occasional stumbling (off balance). But other than that....its too new to me to understand if things are related to chairi or not. I've had (I think??) brain fog but that's rare.
Some days I wake up with faint headache....not during my 'off week'. I used to work out 2-3X a week at the gym (weight lifting, bike, jog) for the past 5 years. Since I've been diagnosed with Chairi, the doctor basically told me to take it easy (I have Syrinx and thickend spinal ligament). So, I've since stopped all weight lifting and have taken it easy. I need to get back into biking/jogging & some sort of low impact exercise program..... I just haven't found the motivation since (sigh).
Just trying to get some insight and thoughts from those who have dealt with this for a long time.
Thanks for reading and your time... I hope you all are able to deal with your symptoms easily and have happy lives!
Have you tried midol teen? Has a diuretic that may help. Also drink lots of water with lemon as it is a natural diuretic. If you feel you need to work out try Pilates and a recumbent bike. No impact and more about stretching. But please talk to dr first as I do not fully know the impact with a syrinx
Emmaline said:
I wonder if it would benefit you to go on the 4 periods a month pill. It would eliminate the hormone fluctuations that seem to be occurring.
Talk to you MD about it...good luck!
Thanks Gang!!!
I haven't tried Midol teen - but perhaps I'll pickup a bottle. I think, at this point...the motivation is hard to find. I'm glad the crazy holidays are over - and maybe I can find some motivation! LOL
Emmaline - did you mean...4 periods a month or 4 a year? I'm not sure I want 4 of them a month!! LOL I guess I've hesitated to change because things have gone sooo well over the years. Perhaps this is the tipping point..... I am older and probably approaching the M word..... Yea, I should talk to my doc more seriously about this.
When I was on BC, I would always have a headache that week. I finally started taking premarin that week and it helped with them. I think mine were hormonal related with that being said I also think my chiari caused my hormonal issues. My pituitary was squished because of the Chiari so it wasn't working right. I dealt with fertility issues in my 20s and have never been regular if not on BC.
Jump forward to after surgery, I am very regular and I don't have those HAs. I don't take BC anymore.
When I was on BC, I would always have a headache that week. I finally started taking premarin that week and it helped with them. I think mine were hormonal related with that being said I also think my chiari caused my hormonal issues. My pituitary was squished because of the Chiari so it wasn't working right. I dealt with fertility issues in my 20s and have never been regular if not on BC.
Jump forward to after surgery, I am very regular and I don't have those HAs. I don't take BC anymore.
Diana
Wow...Chairi can affect a lot more than one would think.
Diana,
You took regular BC and Premarin on the 'off week'? Is it as easy as mentioning to my Doctor that I'm having these headaches during that week?
Isn't Premarin normally taken by post menapausal women?
Stupid question - (off topic, but hell...). I'm 45 and still get periods (although, inconsistent and very weak and only lasting 2 days when its visibly 'there'). If I'm on BC - how do you even know you're going thru menopause while on BC?
I'm wondering if my BC should be changed. I remember, probably 8 years ago (???), they changed my BC so it would have more progestin (???) because I was having extreme bleeding for months. Ended up being a fibroid that was removed. AFter that was over with - they never changed it back. I honestly have no idea what all that means.....
Other than....I think I should talk to my Doc. Should I mention the Chairi? Or at this point, is it un-related (for the most part)?
Thanks for the info and just simply having folks here to talk with.....
I think as long as you stay on the pill you will have the "period" week and avoid the M word. I knew a women in her sixties who refused to quit taking the pill and she still had periods. Not sure what happened to her because last I spoke with her she was worried because her doctor was retiring and he told her no other doctor would dream of keeping a woman her age on the pill!
I don't know if it was chiari related or what but after 15 years on the pill I started having two periods a month and my estrogen was way, way too high. I was told I had to quit the pill and switch to a non-hormonal method of birth control. I have been off the pill for about 2 years and still have some random extra periods here and there but am a ton more regular than before!
So far, being on the pill has been nice and why I haven't pursued getting off it. But, it does make me wonder......about the length of time. I guess that about sums it up with the headaches - they're related more to the 'pill' than chairi. I will ask my doc about it - and perhaps they can change my pill (ingredients) or if they have suggestions. I'm not sure I need to get off it yet..... Just afraid going cold turkey might cause me to be a different person.
How was your experience getting off the pill after 15 years? Am I over-reacting?
Anglyn said:
I think as long as you stay on the pill you will have the "period" week and avoid the M word. I knew a women in her sixties who refused to quit taking the pill and she still had periods. Not sure what happened to her because last I spoke with her she was worried because her doctor was retiring and he told her no other doctor would dream of keeping a woman her age on the pill!
I don't know if it was chiari related or what but after 15 years on the pill I started having two periods a month and my estrogen was way, way too high. I was told I had to quit the pill and switch to a non-hormonal method of birth control. I have been off the pill for about 2 years and still have some random extra periods here and there but am a ton more regular than before!
Honestly I didn't find getting off the pill to be too bad. My cramps were worse but not as bad as they were in my teen years before I started the pill. I seem to have slightly worse hormonal acne issues but I've never had a terrific complexion. I now use the Paraguard IUD and like it. I read horror stories about how painful it was but I haven't had any real issues.