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PostSubject: Birth Control Options    Sat Dec 17, 2016 10:43 am

I recently visited my gyno. I wanted to get the Paraguard iud (non hormonal/copper.) She didn't recommend it for me since I'm only 20 and have never given birth. I've read online about birth control being a possible cause of iih. I'm just wondering if you guys stay away from hormonal birth control? What do you guys take?
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Sophiasmom
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PostSubject: Re: Birth Control Options    Sat Dec 17, 2016 5:00 pm

hi.  do you have IIH?
yes, I avoid all hormones.  I did take natural progesterone for many years, and it seemed to help my IIH, but I stopped it for a different reason.  with IIH one does not want to take estrogens.  I think for someone your age, that the progesterone only "mini-pill" would probably be fine.  I am just suspicious myself of any synthetic hormones.  it's probably worth googling it to make sure no one has reported it as associated with IIH.  it's true you are pretty young for an IUD.  and I would not use the hormone impregnated ones, those have been implicated in triggering IIH.  I had the paraguard at one time but my body rejected it.  I used a diaphragm and cervical cap until I became very chemically sensitive and I had to stop using the spermicide.  you could use plain condoms without spermicide.  there is also a female condom.  I used rhythm.  it worked well for me because I can feel my ovulation and had a very good sense of my cycle.  if you are not sensitive to spermicide, get a diaphragm, they work very well.
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PostSubject: Re: Birth Control Options    Sat Dec 17, 2016 6:04 pm

Thank you! And yes, I do have IIH.
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PostSubject: Birth Control Options - IUD   Fri Feb 17, 2017 8:41 pm

Hi, I'm new to this forum (just signed up yesterday) and I'm catching up on the topics so sorry if you have already found a solution but I thought I would chime in. 

For reference, I am 28. I was diagnosed with IIH about 5 years ago. Most of my symptoms are controlled with Diamox, but I still get around 10 migraine days a month. I had been taking hormonal birth control since I was about 17 because of PCOS. Even after I was diagnosed with IIH, I continued to take the pill to help regulate my cycle. Anyway, about 2 years ago I went to a new gyno and she wanted to take me off the hormonal birth control immediately, as she believed that it was contributing to my migraines and because of my weight she said I was at an extremely high risk for stroke. 

Long story short, I ended up with a Mirena IUD, which is hormonal but it is a much smaller dose than the pill that is delivered directly to the ovaries as opposed to having to cycle through your bloodstream. It's true that IUDs aren't recommended for young women who haven't given birth, but that is mostly because they are easier to place in women who have given birth and they are a hassle to remove if you are young and suddenly decide you want to have kids. Your doctor may have advised against the copper IUD because it is larger than all of the others and it is intended to last 10-12 years. 

I don't have any children, so I had to push for an IUD but I am so happy that I did. Not only did it help regulate my cycle better than the pill, but it decreased the frequency and severity of my migraines and made them a little more predictable.

There are other options, of course, like the Depo-Provera shot and the arm implant. There is also an IUD smaller than the Mirena called Skyla, which lasts 3 years (Mirena lasts 5) and has a smaller dose as well. 

If you believe that your symptoms are being caused/worsened by hormonal birth control then I would absolutely find other methods, but I do recommend considering a small dose hormonal IUD, or at least asking your doctor about one.

It is important to note that Topiramate (Topamax) interferes with the Mirena IUD (I learned this the hard way) so there is a chance that it may interfere with other hormonal birth controls. If you take Topamax, even low doses, I would not recommend using hormonal birth control, especially the Mirena IUD.
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PostSubject: Re: Birth Control Options    Sun Feb 19, 2017 1:22 am

Dear Merga;
forgive me but 10 headaches a month doesn't sound controlled to me.  I am sure it is better than where you were.  and if you google it, there are a lot of people who think their IIH was caused by Mirena.  an association has been published in the scientific literature, and there is a class action lawsuit being developed.  It would be one of the things I would caution against using as birth control in IIH.  I don't think that there are really any hormones that are safe in IIH, other than natural progesterone.  maybe if you stopped all the hormones you could decrease your headaches further.

regarding PCOS, it's important to know that there is a very high incidence of obstructive sleep apnea in PCOS.  OSA is a known cause of IIH.  you might want to look into that.

good luck!
Deb
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PostSubject: Re: Birth Control Options    Tue Feb 21, 2017 4:20 pm

Hi Deb,

I am aware of the lawsuit and I understand the concern, but as they still don't understand fully what causes IIH, I can't justify changing something that has greatly improved the quality of my life, especially since it could have been anything that caused my IIH. Not only do I have PCOS, a high BMI, and a history of hormonal birth control, but I also have hypothyroidism and I went through a very rigorous course of tetracycline antibiotics before my IIH was diagnosed.

Everyone experiences different things that work/don't work for them in terms of dealing with their IIH and symptoms. I was simply offering my experience regarding IUDs.

Thanks,

Megan

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PostSubject: Re: Birth Control Options    Wed Feb 22, 2017 5:01 pm

Hi Megan! This is definitely a hot topic right now, so thanks for sharing your experience. We would be remiss if we didn't mention the risks in this setting, but we encourage everyone to do their own research and choose what works best for them.

I agree with Deb and am concerned you're still suffering 1/3 of the time. When I was diagnosed with IIH, every treatment used for my endometriosis was listed as a possible trigger. You're right, they don't know the specifics, but they have made a definite correlation between hormones and IIH. I was told the IUDs work better than oral birth control because it's more of an extended release, so makes sense your symptoms improved. I know you've mentioned other disorders that can affect IIH, so hopefully you're also pursuing them. It's difficult to manage chronic pain on a long term basis, so we encourage everyone to look for alternatives if still suffering.

I tend to err on the side of caution and avoid anything linked to IIH, but it is a personal decision. If you're trying to make a decision regarding birth control, you may want to visit the IHRF site (www.ihrfoundation.org) and contact them for suggestions. They're the lead in IIH research and should have most current info.
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PostSubject: Re: Birth Control Options    Wed Jun 07, 2017 5:36 am

Hi Ladies, 

I'm very interested in your thoughts on this because I was diagnosed with IIH while on the Mirena IUD. 

It's actually a long story but to make it quick I had the Mirena put in over two years ago, responded negatively, then had it "removed" and a copper IUD put in... after about 9 months I had the copper one removed because I was told I had PCOS or maybe was pre-menopausal. Either way I had no periods and my doctor made it sound like having babies was out of the question. Little did I know the Mirena that was supposed to come was mistakenly left in place.. so for 9 months I had TWO IUD's in place and I unknowingly had the Mirena for an additional year without knowing it was there. I'm curious about what research has been done on birth control and IIH? I think hormones are a big part of why I became unwell. First I got diagnosed with Hypothyroid and then IIH. Since having the Mirena all my hormones have been out of whack and my general health went downhill pretty quickly. The Mirena has been out for a couple months and my gyno is optimistic that within 6 months I might see some changes but my ophthalmologist is convinced IIH has nothing to do with birth control and the answer is simply reducing my BMI. (I have lost 10lbs since having the IUD out 2 months ago but no changes in symptoms yet).

Now I'm on Acetazolamide and Topiramate but I find the side effects unbearable. I'm numb and tingly in my face, arms and legs and feel drunk almost all the time-- and I STILL have headaches. My diplopia is also getting worse. Every time I get a new prism it works for a while and then soon it isn't strong enough. 

Anyway-- links to research you guys have found on IIH and hormones/birth control would be much appreciated!

Thanks Smile
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PostSubject: Re: Birth Control Options    Fri Jun 09, 2017 2:59 pm

I know there are several lawsuits that have been filed that link Mirena IUD's and IIH (Pseudotumor Cerebri), but I'm not sure about the details or research behind it. I do know that hormones have been linked to IIH, so many members have struggled with endometriosis, PCOS, etc. You may want to visit the Intracranial Hypertension Research Foundation site (www.ihrfoundation.org) or email them for latest findings. We have also provided informational link regarding PCOS that you may find interesting (http://www.ihaveiih.com/t972-polycystic-ovary-syndrome-pcos ).

You could also check Women and IIH and Other Conditions Common with IIH posts..maybe you'll find something of interest there, too.
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PostSubject: Re: Birth Control Options    Sun Jun 11, 2017 5:10 am

most women with PCOS also have OSA.  OSA can cause IIH.  something to consider.
that is completely insane about having two IUDs.  I would be considering legal action.  there is a class action out there on this.
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