Angeline:

I really don't know about birth control because I was never "allowed" to be on it due to my migraines and the risk for stroke. (Explains why I have 3 children!) I have read, however, as you have that this can be a contributor to PTC disease. Certainly it is a discussion worth having with your Neuro doc and your OB/GYN.

Regarding the Diamox....Well, I've heard spray tans are safer than the sun anyway. Sorry...you may have to use sunscreen from now on.

- MM3

Hi Angeline,
I'm not sure about birth control since I was not on it when I was dx...I'm sure someone can answer that better for you.

Yes, diamox is harmful when you are in the sun..I made the mistake of missing one part of my arm when i put sunscreen on, and I got the worst burn.

The first time I took diamox my PTC/papilla edeam went away, the second time I was re-dx I tried diamox and told them that I couldn't tolerate it anymore, but the Dr. said the papilla edema actually went away (for me it came back after that)

I hope the diamox helps you and you start to feel better soon, Blessings, Jazzy

HI Angeline,
When I was first DX'd with PTC, I was told that I should stop taking birth control pills as they were thought to be a probable cause of PTC in some people.
However, that was now nearly 13 years ago, and since then I have been dx'd with Endometriosis. I asked my neuro-optho about the use of the Pill to help control the disease and he said using the pill for short periods of time while I am in remission should be fine with very close monitoring, but only as a means to avoid another surgery.
As for the sun and Diamox goes, sunscreen and protective clothes, and lots of water, are a really good idea. Not only can you get horrible sunburns, but you can be like me and get sunstroke too. Not fun. Now I can't take Diamox at all, and have to take other meds instead.
If it helps, Neutrogena makes a great self tanner that doesn't turn orange!

Thanks for all the great responses. Very helpful!
In reference to Reply #3. Do you feel going off the birth control pills helped your PTC? I don't have an OBGYN right now just my PCP. Is there any birth control pills or IUDS etc that don't have fluid retention has side effect? I've been on Seasonale which has been beautiful - 4 periods a year!! But, could also be contributing to fluids I guess.
I'm sad about diamox and the sun. I'm using sunless tanner right now and its okay but I love feeling the warmth of the sun on my skin - our favorite thing to do as a family is go to the beach, lake or pool. We also go to the carribean every winter.
I"m just praying if I loose weight and go off birth control it will fix all of this. Maybe I'm not living in reality, I don't know.

Hi Angeline,
Regarding birth control pills, I THINK, and others, please correct me if I am wrong, it has to do with the hormones, not the fluid retention. Do you see a neurologist or neuro-opthamologist? They should be able to help guide you regarding the IUD questions.
As for the sun, you can enjoy it, just make sure you wear a good sunscreen and drink plenty of water. Diamox has the ability to affect your body's ability to regulate it's own temprature. So, most importantly, while out doors listen to your body. If you start to feel weak or woozy, sit down, take a break and find some shade :)

Thanks for the advice. Just got off the phone with my neurologist and PCP. Neurologist said its a slight possiblity the BC could be contribuing. Iv'e decided to go off the birth control to see if it helps any. I will meet with a Gyncologist to discuss other options. My nuerologist says there are IUD"s with no hormones. Not sure how those work - but will learn more. I may be grasping at straws but oh well, doesnt hurt to try in this case.
As for the sun, I will take it slow and easy and appreciate the advice.

I had symptoms long before my diagnosis, but my HA's started regularly after my IUD was placed and my retina specialist said I may want to have it removed. Bummer, I thought... I barely have periods anymore.

I told my Neuro I had an IUD and he did not suggest removing it. (He's not a talkative guy, so if I don't ask outright, he doesn't offer much info) Everything I've found mentions oral birth conrol. Oral has way more hormones than any birth control where the meds are delivered directly to your uterus (like nuvaring or IUD). Maybe this is why?

This past weekend, my husband and I went to Churchill Downs for opening day. SPF 85! The heat still got to me and we had to sit inside until the shadows came over our seats. There's a bit of adjusting to do, but we should be taking care of our skin anyway.

Bax

Bax - Thank you. I am dreading going off my oral birth control. I'm taking Seasonal - so only have periods 4x year - so nice. Also periods are much lighter with little to no cramping. I guess I've been spoiled.
I am planning to discuss IUD"s with my new OBGYN next week.
I am concerned because If my headaches improve I will not know if its from the diamox I've recently started to take or if its from going off oral contraceptives. I guess I'll take it one day at a time. if the headaches go away it will be a blessing!
have a good evening!

Angeline,

Contraception education is part of my job, so have a reader's digest condensed version... or maybe not so condensed.

Regular pill has two types of hormones, progestin and estrogen, at differing levels depending on what color pill you are at in your cycle. The highest is the darker blue. It has .250mg of progestagen and .035mg of estrogen. Seasonale has .150mg of progestagen and .03mg of estrogen.

There are two types of IUDs. I have Mirena, which is hormone-based. I had tremendous cramping the day it was placed, but was much better in a day or so. My cycle all but disappeared within 3 months. Be sure to double-check with the neuro before you have the GYN gives you one, just to be sure. The estimated daily dose of progestagen is 20 micrograms!

The copper one is the old-fashioned kind our moms could get and they do not use hormones. They are associated with heavier periods and more cramping. But for long-term pregnancy prevention, the IUDs are a good way to go.

So the not-so-long-term direct-to-uterus delivery of hormones method would be the nuvaring. It has .120mg/day progestin and .015 of estrogen. (Similar to seasonale... hmmm, but it doesn't have to go through your whole body) Little plastic ring (reminds me of the jelly bracelets I wore in the 3rd grade to look like Madonna) that sits just inside, about where a tampon would hang out. You can't feel it, it doesn't go anywhere, doesn't interefere with "activities", easy to remove. Instructions say to wear for 3 weeks and remove for 1 to have a period. My nurse practioner said to wear for 4 and go right into a new one if I wanted to not have a period like with seasonal. Way convenient, especially if you may want to have more babies in a few years. I never ever want to be pregnant ever ever ever again, which is why I switched to IUD.

Good Luck and Happy Non-Procreating!

WOW Bax,

I renounce my title as Pseudo Doctor and proudly give it to you!

Way to go!

TJ
Pseudo Doctor assisant to Bax

Dear Bax - Thanks for all the great information!! Ive printed your response and am writing a list of questions to ask my OBGYN.

Have a great day!
PS..Sounds like your awesome at what you do!!!

lol TJ! Not Pseudo Doc. That title is clearly yours. What I've got is years of experience working in a maternity center and doing home visiting providing education and resources to prenatal women and mothers of newborn. So it's medical filtered through social work. Betcha didn't know you'd learn so much!

Angeline... don't forget to talk to your neuro about the dosing of the hormones. OBGYN probably won't know very much about PTC.

Bax, Thanks again. I will meet with the OBGYN and get the final say from my neurologist. I don't think he will really have much of an opinion. When I asked him about the birth control his response initially was that many people are on BC without issues. He did say it was a possibility though.
Will keep you posted.
Thanks again.
Angie

Hi Angeline!
I want to share you my own experience. As you should know by now, we all have very different experiences even with the same treatment. I'm a patient of Endometriosis for the past 20 years. For the past 15 years I used non-stop the birth control pills (the first 10 years) and the for 4 more years I was switched to Seasonale, which as you just said is soooooo great (for the very same reasons you said). Then....(here comes the interesting part of the story) I stopped taking any pills when I got married on 2004... and my PTC was discovered in December 2008. So....are the birth control pills related to my PTC...No doctor has been able to answer properly (or with real knowledge) that question. My personal guess is that IS NOT. And I'm inclined to think isn't because I stopped using them almost 5 years before I developed the symptoms of my condition. Regardless my useless opinion, I must aknowledge that all my doctors (OB-Gyn's and neurologists) are AGAINST the use of more birth control pills forever in my case which was the worst news I got after my dx of the PTC.

On the other hand, I'll keep looking information regarding this subject because I really need to be very convinced that I must not use the Seasonale anymore. I'm not that conviced right now. However I don't wanna mess with my recovery, therefore I'm still following my doctor's advice.

The reason I may sound stubborn is because my Endometiosis has gotten OUT OF CONTROl since I discontinued the Seasonale and I even tried surgery which wasn't of much help to me.

Finally, I dropped 32 pounds since my Dx last December 2008, and I everyday closer to a remission status. My last visual tests came out very good, so losing weight in-my-case did made the difference.

My plans for the future, as soon as I'm on remission status, are to re-engage in the controversy of "to use or not to use" the birth control pills, because it's making my life miserable not using them for a "chance" it is related to my condition.

I think that if it was related why it took almost 15 years to affect me? Why it affected me after 4 years of not using them? These are the answers I need to know in order to drop them forever.

Hope I was in some way of any help.

As far as the Diamox, I just found out it has some "sun exposure" effect...

Krystell - Thanks for sharing your story. It is all so very confusing. I certnatiany understand your doubts about seasonale and your PTC. Seems that the two are not connected if you were not even taking it for four years prior to your diagnosis. I'm finding that there is such little knowledge abou this disease which is so frustrating for us suffering.
I'm meeting with an OBGYN on Weds to discuss Birth Control. My suspicion is that she will know little to nothing about PTC. So, this leaves me trying to make an informed decision. I"m leaning towards a hormal IUD. I guess it delivers much less hormones than Seasonal and directly to your uterus. It also helps to lessen periods. I'm happily married but one 3 year old is enough for me right now!

I'm happy to hear you are feeling better and possibly headed for remission - how great!! I hope to get there someday soon. I'm trying to loose weight. My neurologist recommended 15-20lbs. I've lost 5 in 3 weeks. I"ve noticed since being on Diamox my appetite has dimenished.
Thanks again for taking the time to respond. I've found the support/advice/education to be so helpful.
Angie