Dysautonomia & Birth Control

[artsystacey]

Hi everyone!

It's my first topic on this forum. I have NCS, POTS & SVT. I was curious about other's experiences with birth control and their symptoms? I recently was taken off the pill because it was determined that migraines are a contraindication for anything containing estrogen, and a blood test also revealed a possible blood clot that was never found. So, I'm now on progesterone only BC in the form of Depo Provera - and it seems like it has made a BIG difference in my symptoms! I have a lot less heart racing and less hypotension all around - I'd say a 50-75% (depending on the day) reduction in symptoms. Right now I'm due for a new shot and I can feel the hormones waning - my heart is racing easily and I have more orthostatic hypotension.

Just curious if anyone else had good/bad reactions from birth control meds?

[Bigskyfam]

I tried ocp- nausea and headaches

I tried mirena- dislodged, embedded

I've had a tubal ligation but trying to manage mennorhagia

Your post is encouraging for progesterone only

[PupLoverKV]

Interesting, I loved Depo Provera but was on it so long that they will not prescribe it for me anymore. Apparently being on it too long can mess with your fertility.

I have noticed in the past that a lot of birth control methods just didn't agree with me. I didn't have POTS yet but have always been very sensitive to changes in hormones with very extreme reactions happening very quickly. Implanon, Nuvaring and various pills have always caused me to have alarming side effects until I was put on Yasmin. It's so bad that one time a substitute doctor filling in for mine wrote Yaz instead of Yasmin. After a few weeks on it my hair started falling out - very visible patches of it.

I do think birth control can have very dramatic effects on your health and well-being. I, personally, am not 100% sure it's related to the dysautonomia though since I had so many problems 10-15 years before I ever had POTS. I'm so happy you were able to figure the BC out. Depo Provera is awesome!

[Faye]

I was on depo for 14 years do to endometriosis, and the shot was no longer working and stared to yield other issues, had a hysterectomy best thing for me.....but Depo was pre POTS with multiple symptoms and I loved depo it was the cure for me for a long time.

[RichGotsPots]

Im a guy so I can't help you with a birth control question, but there is definately a connection that I've posted about a while ago about hormones as they relate to autonomic signals and affects

[Katybug]

I can't tolerate my own body's estrogen or any BC with estrogen in it. My symptoms become much worse.

I, too, am on Depo Provera and I wouldn't be without it. Because I am 41, I was told last year that we have to be diligent about doing bone density testing but my ob/gyn nurse midwife has other POTS patients and feels that the benefits for me far outweigh any potential concerns. I actually had to go on BC at an early age because of very heavy, painful periods. I spent years trying different estrogen based pills/Nuvaring trying to find one that didn't make me feel like garbage (and that was before POTS.) In my 20s I found Depo. At one point my GYN (different than current), wanted me off of it because of the fertility issues (although I have never had a desire to have children) and that was a disaster. I started seeing the NM and she had no issues putting me back on.

I also recently found out that I have a form of von Wildebrand's disease, a bleeding disorder. The hematologist said that this may explain my miserable periods and that it is a stroke of luck I have been on the Depo which has stopped my periods all together for years. She said I probably would have lost more blood than is appropriate for a period and would have made my POTS worse once it had developed.

All in all, the docs would have to prove to me that Depo was actually going to kill me to make me stop it again.

[DizzyGirls]

This is encouraging! My daughter just had her first shot of Depo. We were a little nervous to start it because she had bad side effects from the two other estrogen containing bc pills. Her Dysautonomia gets so bad the week before, during and after her period. We had to do something. Right now she is fighting the most stubborn of yeast infections in addition to an equally stubborn UTI. She is on her third antibiotic. They will treat her for three days, then in two days the UTI comes back, switched antibiotics, treated her for another three days, FF two more days and the UTI came back again. She is on 5 more days of the Cipro, thinking about asking for a few more days as the UTI now seems to have moved to her kidneys. I know we are not really discussing this in this thread, but, since this is more of a 'ladies' issue, has anyone else had this problem?

[PupLoverKV]

I can't tolerate my own body's estrogen or any BC with estrogen in it. My symptoms become much worse.

I, too, am on Depo Provera and I wouldn't be without it. Because I am 41, I was told last year that we have to be diligent about doing bone density testing but my ob/gyn nurse midwife has other POTS patients and feels that the benefits for me far outweigh any potential concerns. I actually had to go on BC at an early age because of very heavy, painful periods. I spent years trying different estrogen based pills/Nuvaring trying to find one that didn't make me feel like garbage (and that was before POTS.)

This sounds EXACTLY like my story. I was put on BC at 13 because I kept passing out during my period (very heavy, very painful, severe anemia despite supplements). If EDS testing proves type IV I personally will have decided that I'm not going to have children (too many issues, sort of a "straw that broke the camel's back" sort of thing). I wonder if they would let me go back on deep at that time if I stop expressing the urge to have kids in the future.

[PupLoverKV]

This is encouraging! My daughter just had her first shot of Depo. We were a little nervous to start it because she had bad side effects from the two other estrogen containing bc pills. Her Dysautonomia gets so bad the week before, during and after her period. We had to do something. Right now she is fighting the most stubborn of yeast infections in addition to an equally stubborn UTI. She is on her third antibiotic. They will treat her for three days, then in two days the UTI comes back, switched antibiotics, treated her for another three days, FF two more days and the UTI came back again. She is on 5 more days of the Cipro, thinking about asking for a few more days as the UTI now seems to have moved to her kidneys. I know we are not really discussing this in this thread, but, since this is more of a 'ladies' issue, has anyone else had this problem?

Have they cultured the sample? I know Cipro is a "usual" choice but sometimes it does not always work. Add in the yeast component and she could end up in a horrible cycle. If they haven't cultured the sample ask them to. I've had some weird stuff come up myself. I used to joke that I'm immunocompromised and now I'm beginning to think there is something to it despite being negative to everything from an immune perspective. I've gotten UTIs from weird bacterias that only appear in hospitals well before I was ending up there.

Culturing the sample should help. As should AVC, Probiotics (don't chance them with kombucha if she has POTS), and maybe some sort of anti fungal. I've gotten terrible bacteria and yeast infections where I've needed a double dose of diflucan in addition to the antibiotics. It's not standard but may help. Good luck to your daughter!

[imapumpkin]

birth control actually is a must for me. not only does it actually give me a 5-10 point boost in my BP, but it keeps me from having really awful heavy periods that make my BP even lower and drags me down into anemia...every. single. month.

[DizzyGirls]

PupLoverKV, They cultured the first sample, but their standard is only for two days. It was at the urgent care clinic, not her regular PCP. He was really mad that they didn't do it for 7-10 days. He said two days wouldn't show them anything. I agree. That's how this cycle got started. Should have just pushed the PCP to see her in the first place. She's doing a bit better, but all her POTS symptoms are skyrocketing because of Christmas. Talked to her PCP yesterday and he said "don't worry, I'm not leaving town. Just text me if you need me." Gotta love him!

[Katybug]

DizzyGirls,

Has this daughter been to an immunologist and a hematologist?

Although, I seem to have grown out of it (I may have just cursed myself for writing that), I used to be exceedingly prone to yeast infections through my teens and 20s.

I'm now finding out that I have chronically low IgM, IgG total and 2 subclasses. I also have strange hematologic issues which are still getting sorted out.

I was very inappropriately prone to strep as a child, then the yeast infections. I had a bleeding complication with my tonsillectomy in 4th grade, then the heavy periods.

No one put any of it together until I developed POTS and other strange symptoms that no one could either explain or get control of. I was floored, frankly, about the hematologic issues as I have never perceived my bleeding as inappropriate. I'm even more floored that I have 2 diametrically opposed issues...one that makes me a clot risk and the other that makes me a bleed risk. It is beyond confusing and I'm currently waiting g to see a coagulability guru at Georgetown.

And my low Ig is chronic but the numbers aren't outrageous so it was being blown off until just this past month when I saw a new immunologist. Even with the POTS/EDS/MCAS diagnoses, it has taken 8 years of being disabled by my symptoms to finally uncover these issues. The new immunologist has said we need to monitor my Ig levels. Currently, they are not low enough to be medically classified as CVID, but, he said that based on my numbers and some symptoms/clinical presentations, I may have what he would consider a variant of CVID.

When I was young, they literally didn't know about some of this stuff or it was in its infancy. They know more now but because they are still rare diagnoses, if you think any of this is worth tracking down to rule it out, you may have to bring it up to the docs....my PCP is awesome but admitted he had never heard of a couple of these things, so he never would have sent me to these specialists on his own.