lieze Posted January 3, 2011 Report Share Posted January 3, 2011 Has anyone else noticed this.This past week for at least 5 days in a row there I had a bad episode almost everyday and was losing all self confidence.They have finally stopped and at the same time I am seeing signs that look like I am beginning to start.Has anyone else noticed this? Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted January 3, 2011 Report Share Posted January 3, 2011 Has anyone else noticed this.This past week for at least 5 days in a row there I had a bad episode almost everyday and was losing all self confidence.They have finally stopped and at the same time I am seeing signs that look like I am beginning to start.Has anyone else noticed this?What kind of symptoms? I definitely have symptoms related to my menstrual cycle, but they differ depending on the time of the month. I recommend that you make a calendar or buy a cheapo one, and write down your symptoms along with your menstrual cycle (period, ovulation, etc) for a couple months to see what pattern(s) you detect. Since I am only now recognizing that some symptoms that I've been having on and off for a while are actually related to dysautonomia, I haven't tracked them to know how they are related. It'd be interesting to know what you're experiencing. Sorry I can't tell you how my bp problems appear to be related yet.I have catamenial epilepsy, tho, which is a kind of seizure disorder where I have seizures before my period. I am "lucky" in that the initial months of my head blowing up were so dramatic, that I was able to notice this pattern almost right away. Tgiving night 8 ys ago, I ended up in the ER (that time with undiagnosed seizure spells-long story) and was hospitalized for several days. While in the hospital, my period came. A month later, I was hospitalized because of status epilepticus seizures and stayed another few days. Again, while in the hospital, my period came. Well, a month later, when I had another (but more mild, thanks to medication) round of seizures and then my period came....it was like *lightbulb*! The theory behind catamenial seizures that makes sense to me is that estrogen is excitatory to neurons, whereas progesterone inhibits that effect, or is "calming". Towards the end of a cycle, progesterone drops before estrogen, leaving vulnerable individuals even more vulnerable.I've also correlated both difficulty urinating and achiness/flu-like feelings (not at same time, but across the years) with the week around ovulation, as well. It'll be interesting to see how bp problems correlate with time of month.As an aside, something I first heard of on the epilepsy boards many years ago was that people who experienced catamenial epilepsy used a couple different methods to increase progesterone. One way was to go on the progesterone-only (NOT regular bcp!) bcp. I did this and it actually helped. Until I moved, and my new endo was incredulous that I was "self-medicating" (although I was a married woman so who cares if I was on bcp); I was ticked but rattled enough that I went off it. (and that was a *disaster* because she messed with a bunch of stuff all at once, and my health tanked! Now I'm MUCH more adamant about taking a conservative approach to medicine changes when starting with new doctors).It'll be interesting to see if others have associated dysautonomia symptoms with their cycles. Thanks for asking! Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted January 3, 2011 Report Share Posted January 3, 2011 I started noticing this about 6 months into my dysauto. I started charting and realized that I was much worse during this particular week. I don't have a period so it was hard for me to determine if it was the right before, the during or what! I actually would start planning around this week as I knew it would be **** if I tried to do anything fun during that time. I have heard this has to do with progesterone but I dont know as I have started taking progesterone and it has made me feel better so I'm not sure! Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted January 3, 2011 Report Share Posted January 3, 2011 I have lots of trouble around the beginning of my period. Before it starts I have more OI and lots of pain, then I seem to also have the strange anaphylactoid episodes on day 1 and 2, especially at night, with icreased skin itching, flushing, trouble breathing and tachycardia. Quote Link to comment Share on other sites More sharing options...
k'smom Posted January 3, 2011 Report Share Posted January 3, 2011 We've noticed that Kay is worse the week of and after her cycle, with episodes everyday. Quote Link to comment Share on other sites More sharing options...
samannran Posted January 4, 2011 Report Share Posted January 4, 2011 I faint more often the week before and the week of my period. Quote Link to comment Share on other sites More sharing options...
Lovebug Posted January 4, 2011 Report Share Posted January 4, 2011 ABSOLUTELY I feel a link b/w this condition (symptoms) and my "dot". As a matter of fact, I noticed the link prior to ever being diagnosed with Dys (I was diagnosed in July/Aug). And ironically I'm having PMS right now and thus the miserable symptoms have begun!!! The main thing I've noticed so far is dizziness is much more prominent. But I also have a plethora of the other miserable symptoms such as increased abdominal pain or pain sensitivity in general, IBS-D which is usually OK without my dot, extremely cold all the time with cold hands/feet, stiffness in my joints, tinnitus, pressure in my head, heart racing, shortness of breath, anxiety, feeling of impending doom, shall I go on...? LOL! And it seems my symptoms last through PMS and all of my bleeding (usu. 10 days). Another interesting point is that I was unable to tolerate a low estrogen BCP (tried 3 different times) b/c I had such severe abd pain. My GYN wanted me on them to prevent my endometriosis from growing back. Now I dread "that time of the month" and fell helpless when it happens. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted January 4, 2011 Report Share Posted January 4, 2011 Indeed, the severity and increase in the number of symptoms always increases the week before and the week of as well for me.... i realized that a long time ago, but didn't know it was typical of so many women on here. It's nice to be re-affirmed by what you already know but felt alone in.hope you get to feeling better soonhilbiligrl Quote Link to comment Share on other sites More sharing options...
lissy Posted January 4, 2011 Report Share Posted January 4, 2011 I also have this problem and have responded to past posts. My cycle brings on More fatigue( almost bed bound), weakness, off balance, and I get weaker and weaker till it ends and it takes my body at least a week to recover. Its very bizarre to me that before my severe onset of dysautonomia I had a baby felt extremely weak but when my 1st cycle came after the postpartum time is when I crashed and never returned to normal function and it seemed every month would add new symptoms. For a long time I thought my illness was gyno related and I badger my OB for months after delivery thinking they missed something or something had went wrong with delivery, but I imagine the blood loss caused the downslide of symptoms and hormonal changes.I have thought about if I could find a way to end my cycle I may get better; the ablation may help but I am a worrier and think of something else going wrong. I have not tried any BC because I have had some weird blood clotting results in the past...There has to be something to stop the worsening of symptoms just haven't found it yet and if I do I will let everyone know!!!Lissy Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted January 4, 2011 Report Share Posted January 4, 2011 I also have this problem and have responded to past posts. My cycle brings on More fatigue( almost bed bound), weakness, off balance, and I get weaker and weaker till it ends and it takes my body at least a week to recover. Its very bizarre to me that before my severe onset of dysautonomia I had a baby felt extremely weak but when my 1st cycle came after the postpartum time is when I crashed and never returned to normal function and it seemed every month would add new symptoms. For a long time I thought my illness was gyno related and I badger my OB for months after delivery thinking they missed something or something had went wrong with delivery, but I imagine the blood loss caused the downslide of symptoms and hormonal changes.I have thought about if I could find a way to end my cycle I may get better; the ablation may help but I am a worrier and think of something else going wrong. I have not tried any BC because I have had some weird blood clotting results in the past...There has to be something to stop the worsening of symptoms just haven't found it yet and if I do I will let everyone know!!!LissyOMG Lissy! I LOVE finding people who say the same thing I've experienced! You are number 3, still anecdotal, but I think it means something. After baby 1, I had the fatigue problem and kept going to the gyno thinking it was female-related because I was also having ovarian cysts at the time. He was a jerk, patted me on the head, and told me it was a typical female thing to feel tired. Anyway, it was during this time that I discovered I was sensitive to carbs, so started on the Low Carb diet and felt MUCH better. Anyway, that's not the interesting thing...After my second baby, I bf for 18 months. I was tapering down and was only nursing at night, then went away for a conference. A lot of stress, away from the baby for the first time ever....had a period while I was away. Two weeks later my head blew up and I've never been the same since. Non-coincidentally, my problems are correlated to my female hormones (catamenial epilepsy, at minimum).I met someone else who started having seizures after stopping nursing (and therefore presumably also starting back with normal hormonal cycle). Quote Link to comment Share on other sites More sharing options...
kjd111 Posted January 5, 2011 Report Share Posted January 5, 2011 My daughter has somewhat the opposite problem. She feels bad from about days 7 to 16 of her cycle, with mid-cycle at the very worst. She doesn't technically have POTS, but does have NMH - with tested low catecholamines and VERY low blood volume (also tested). For whatever reason, she is MUCH better in the back half of her cycle and through her period. Its when the estrogens, FSH and LH start to climb that her blood vessels dilate the most, she "swells" and feels dizzy and terrible! I wish we could "bottle" the back half of the cycle and have it for 'always'. Quote Link to comment Share on other sites More sharing options...
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