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Pots Symptoms & Pms - Does It Make It Worse For You?


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I am now on Seasonique for about a year now (period 4 times/year) because I was having horrid PMS, pain, and migraines. The Seasonique is lessening all of this...I still have PMS, pain, and headaches but they are no longer almost disabling.

I was diagnosed with POTS last January and have only had a couple periods since then. I know my last one made me a bit more symptomatic (wish I would've paid more attention), but this one seems to be really harsh on my symptoms. I'm having more fatigue and faster heart rate on standing. Obviously, the fatigue could be in part the period, but I know most of you guys know what I mean by more POTSY and I am. And my heart rate is just higher standing/walking around/etc to the point where that's really exhausting (130s/140s compared to 100-115 on a more 'normal' day). BP is normal for me, fluctuating, but nothing out of the ordinary.

Do any of you see changes around and during your period with your POTS symptoms? I guess this is something I have to bring up with my doctor next month...any suggestions on what I can do to help symptoms? I'm drinking, drinking, drinking and eating salty foods as much as I can.

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I'm pretty sure there have been some previous threads on this topic. You should do a search for some tips.

You mentioned you only have periods 4 times a year now. The only relief I found was stopping my periods all together. I'm on depo provera, so I have no periods (haven't for a couple of years). I do have spotting sometimes, but nothing like my regular periods. I have mild endometriosis and depression, both of which were exacerbated by my periods. My POTS symptoms were worse, too, I just didn't realize it since it was before my diagnosis. As far as other tips, I never found anything else that helped. Good luck to you!

Meg

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Yes, I am so sick when I am on my period, for a whole week, I don't understand why at this time I'm in so much pain, and as if I am not fatigued anogh already, I am more fatigued when I am on my period, I was on birth control, which helped my symptoms, but when to the ER once, and he took me off, and gave me plavix for 7 days, never did understand that one, what can i do to stop by periods, afraid of surgery, don't need another people that makes me fat either

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Yes they do, and I also went for the stopping my periods solution.

My preferred solution was also depo provera, but after 5 years my prescription was withdrawn due to concerns about osteoporosis (I think this is technically rubbish, but I wimped out from fighting that one!) Anyway, I went for an implant in my arm instead (Implanon) which lasts 3 years. For me, not as good, but much better than doing nothing. Plus points compared with depo provera are no weight gain and no problems with feeling a bit "flat". Bad point is irregular bleeding (don't underestimate this if it is something that would concern you - I understand it is the top reason for getting implants removed).

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I use to be on Seasonique (or was it Seasonale? One of those has a low dose hormone even during your OFF week and that is suppose to make things better for those of us who have horrid crashes during menses.) But my cardiologist insisted I go off hormones completely. I am 45 and he is concerned about the implications at my age.

So I've been hormone free pretty much for the first time in decades (except for my three children ;) ) and so far it hasn't been too bad. Honestly I was having equally horrid symptoms even while on the Seasonique. I also tried Ortho Tri Cycline. Surprisingly it was when I went OFF the BPs that my hot flashes have diminished. Strange I know.

I still get more tachy the week before but so far I can't complain. I hope that I can stick it out through the next few perimenapausal years and then just be done with it.

Good luck finding something that works for you.

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I guess the additional fatigue and tachy-ness & menstrual cycles is just a fact of life with POTS...it is just so bizarre what this condition does to us. I'd like to know medically how POTS is so affected by menstruation/PMS.

For those on Depo - how much weight gain did you have, if any? I did way too much searching the Web on this and some gained weight, some didn't. Is it one of those up to the individual things?

I tend to be somewhat sensitive to medicines & stuff, but haven't read many reactions to Depo that are any different than I've had from BC Pills that just didn't agree with me, so that's a plus. I suppose you give it a try for 3-6 months and see if things regulate.

A plus, I read since it's non-estrogen based you don't have to worry about blood clots/DVT. That'd be a relief for me as I get migraines.

I'll talk to my OB and Cardio about Depo and post back here w/ anything important I find out. Hopefully they are willing to let me give it a try. Having periods every month is not an option, though. It would highly interfere with me being able to work and function.

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Prozac and Yasmin through periods---though my period has been malfunctioning as of late, not sure I can skip it like I wanted to. Seasonale made me bleed for 3 months straight and it looks like Yasmin is doing the same. I'm not saying this would happen to any of you, they're awesome birth controls, I just have a stubborn uterus I guess ><

My doc refuses to give me Depo because she says all her patients have had health problems because of it, so I'm surprised to hear about it here! I would love to do Depo =(

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I forgot to mention ... (brain fog) but for five years previous to trying the birthcontrol pills again last year I had the mirena iud. This is a ultra-low hormone coated IUD and that for many women lightens the period and in my case completely stoped menses after about a couple years. So for the last three years, other than a very scant spotting now and then I had no period whatsoever. It wasn't until the five years were about up on the Mirena that I started getting all of the intense POTS flares again. Hmmm.... at the time I was blaming the Mirena in my mind ... but maybe it was that the horomes were about through that caused the issues to come again. I'd still recommend the Mirena.

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I'm on depo also, and haven't had a period in years. I can't say anything but good things about it. I don't think I have weight gain because of it. I battled extremely heavy 10-day long periods since I hit puberty with cramping so bad I couldn't function. I started BC pills very young to control that. But the pills had so many other issues, side effects, interactions with antibiotics, and on and on . . . no matter which ones I tried. Then I had surgery on my ovary and I was having even more pain, and my doc suggested I try depo. Depo has just been great. It took several months to get adjusted to it where I was still having some bleeding, but once I got to having no periods--woohoo!!! My sister has been on it even longer than I have and also swears by it.

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I did have to fight a little with my psychiatrist for depo because it can contribute to depression (apparently) but in my case the cycle was more of a problem than the med, and I don't think it really contributes at all. Also, I don't think I've had any weight gain because of it. If I have, it's less than 5 pounds, not enough to notice. (And I do notice when other meds make me gain weight.)

Melissa-I haven't had any health problems with it, and I've been on it a few years. What kind of things was your dr worried about, out of curiosity?

Meg

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Melissa-I haven't had any health problems with it, and I've been on it a few years. What kind of things was your dr worried about, out of curiosity?

Meg

She had a bunch to say about it because I really, really wanted it and was being somewhat stubborn about being talked out of it. It's just sort of her policy at her office not to give it to her patients because of lack of research on it and proven adverse effects on young patients. It might just have been my age that bugged her, I'm 22 and probably still growing.

Studies released in 2004 show that Depo Provera is associated with a loss of bone density resulting in an increased risk of osteoporosis. The bone loss appears not to be reversed when the woman goes off Depo Provera. Depo is not recommended for long term use and especially not recommended when the young woman is still growing her bones. Women on Depo are advised to exercise and take in plenty of calcium. If you have taken Depo Provera for more than two years, you might want to get a bone density test.

She also said there was absolutely no research on whether or not it causes breast cancer, which is important with birth controls because hormones are the lead cause of cancer period. Her biggest complaint though was that if I had an allergic reaction or some kind of health complication because of it, it takes 6 months for it to be completely out of your system. The birth control effects from it last 3 months, but it is detected in your system for 6 and will complicate any pregnancies for up to 18 months. If I were to get accidentally pregnant, the baby would be compromised no matter what because the progesterone is in your system for so long---most women are forced to get abortions or have premature babies that have health conditions. Most of the patients she gave it to gained a lot of weight and became really depressed with horrible mood swings for months on end, and she spent more time treating their side-effects than anything else. So I guess her experience with it was really bad, so I understand why she doesn't like it. If it were just some of her patients that this happened to, she said she'd be okay with it because it'd be like any other BC. But she said 90% of her patients had problems so that showed her it just wasn't ready for the market yet no matter how cool of an idea it was. She's frustrated that it has been around so long without having enough research on it or adjustments to it.

It's really hard to say no to the convenience of the shot... I've been hearing so many good things about it from you guys. I'd love to have the shot. I'd definitely regret it though if I had an adverse effect to it---6 months, whew. I don't know. It's a tough decision---and I'd have to go to another doc for it unfortunately >< I wouldn't be able to hide it from my primary though lol

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I've heard so much good/bad about Depo. But stopping the menstrual cycle sounds wonderful.

My OB/GYN also recommended Mirena for me...it's a bit $$$ up front but lasts five years. I heard it really, really hurts getting inserted and you are sore for a few days after. She seemed to agree that yes, being inserted is rather painful.

But right now even 4 cycles a year are getting me down. I pretty much have to plan a couple days off work during 'those times' which is annoying. Like there isn't enough other POTS stuff to deal with!

These decisions are always hard to make...and with our outstanding condition(s) it's even worse. If a healthier person had issues for 6 months from Depo, it may be more tolerable than someone with Dysautonomia/POTS having 6 months of an additional problem caused by a medication.

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I would not personally get any permanent or SEMI permanent long term hormonal deal. Because if you feel WORSE its a huge deal to get it removed and out of your system.

I had horrible reactions to birth control pills but could stop them feel sicker, a few days, and go back to normal....but long term shots can be HORRIBLE for some of us...I am very sensitive to meds and hormones and my endocrinologist/ans doc would never suggests those options for HORMONALLY sensitive women...

but we have to take our own chances...could you deal with feeling horrible for MONTHS from an injection? Or could you take the gamble it may help? I know, no easy answer.

I get HORRIBLY depressed from progesterone and could never handle it.

Good luck making a big decision! :rolleyes:

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could you try a progestin-only mini-pill? I think it's got the same hormones as depo, but you could stop it if you felt bad. It's the only kind of hormone I can take, because of my weird migraines. that said, I haven't taken it, because I'm afraid of how I';; react. But a pill, you can stop immediately if it gives you a bad reaction.

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If I were to get accidentally pregnant, the baby would be compromised no matter what because the progesterone is in your system for so long---most women are forced to get abortions or have premature babies that have health conditions. Most of the patients she gave it to gained a lot of weight and became really depressed with horrible mood swings for months on end, and she spent more time treating their side-effects than anything else. So I guess her experience with it was really bad, so I understand why she doesn't like it. If it were just some of her patients that this happened to, she said she'd be okay with it because it'd be like any other BC. But she said 90% of her patients had problems so that showed her it just wasn't ready for the market yet no matter how cool of an idea it was. She's frustrated that it has been around so long without having enough research on it or adjustments to it.

Hello, I have to disagree a little with your doctor. Not all women who get pregnant right after the Depo shot wears off are forced to have an abortion or some other horrible thing. :P I got pregnant with Morgan the week I was supposed to go get my next shot. (Yes, I'm THAT fertile! LOL) I had a completely normal pregnancy and she is one of my healthier kids. My OBs never said anything about having an abortion or that she might be premature because of the shots and they knew that one had just worn off. Morgan was actually 8 days overdue.

I totally agree with everything else she said though. The side effects can be awful. :( Constant depression that nothing helps, weight gain, mood swings, etc. I had all that too.

I hope you find something that helps your symptoms!

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I've found that NuvaRing helps me a lot. (Though I hate the week that it has to be out, POTS symptoms galore). It's mostly a local effect, so I don't get the systemic nausea and diarrhea that I have gotten with every other BCP. I'm going to talk to my gyno and see if I can keep go without having a period on it. I really feel that my energy has returned on NuvaRing. Some side-effects, yes, but it's worth the energy boost.

Sara

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