Wow, I think my cycle really affects my symptoms! I'm starting to track this seriously, but I think I improve right after ovulation, and relapse dramatically just before the end of each cycle. When I look at those estrogen/progeterone cycle line-graphs, my symptom improvement seems to precisely follow the "progesterone" line. I improve when the progesterone kicks in, and crash when it plummets.

I have read, though, that they haven't had much success using birth control pills to prevent these crashes (mini-crashes in my case, but some women evidently are in danger of an MG crisis at the end of each cycle). I'm really, really hesitant to mess with my hormones anyway.

There are natural progesterone creams, but they're used only in the second part of each cycle. It's the first part that seems to be giving me trouble.

Not sure what to do next. Talk to my gynecologist? This is very weird.

Abby

Hi Stellatum,

Yes, there can be a direct connection between menstration and MG symptoms. My neuro informed me that I may get a flare up now and then during my cycle. Menstrating is a trigger, just like emotional stress. I am on the pill right now and it doesn't seem to be helping any. In my experience, I am having a flare up almost every month. It is worse at the beginning of the cycle and then slowly gets better.

check out this quick Q&A on the topic: http://www.netwellness.org/question.cfm/36644.htm

m

Hi Abby,

yep I can tell when my period is due, cos I crash, my body just feels terrible. My symptoms worsen, droopy eyelids, arms and legs stop working properly etc etc, its even worse in summer, I hibernate in my AC cooled unit.........oh the joys of being a woman :-)

Same here, although it is different every month. Sometimes around ovulation I feel almost normal and have to be careful not to overdose on the Mestinon. If I am going to have a bad week it is usually during the week before my period starts.

Something I did notice is that when I was taking Magnesium vitamins regularly, I didn't get the "crash" with my period, at least the weakness wasn't as bad. I am eating more vegetables that are high in magnesium now, and only taking the Magnesium vitamins on occasion, this really seems to help but not prevent this monthly effect. Gives me hope. I wish that my neurologist was trained in the effects of nutrition on MG.

I've found my symptoms to be worse during my period too. In fact, my last big episode happened the last day of my last period. I just have know energy, and my muscles all feel so weak. I know I should probably just take it easy during that time, but I'm not always very good about that. I usually over do, then crash later.

Abby, Find yourself a good endocrinologist! They are the hormone experts. There's no rule that says you can't try progesterone when you think you need it and see what happens! But you should probably get baseline testing during the time you are worse to actually see what is going on.

The "smart" doctors don't separate the neuro and endocrine fields. They actually use the term "neuroendocrine" to describe many diseases. Just as changes in fluids/electrolytes can adversely affect MG, changes in hormones can mess you up too!

I hope you can find a good balance that keeps you on an even keel.

Annie

I just have a very short period -- like one day and a half.

However, if I stand for too long, my sides of my back feels funny. I always thought it was my kidneys. I just learned to stand less during my period. If I did that, then I was okay.

Thanks, Annie. I have an endocrinologist for my Graves disease. I'll talk to him. I used to have migraines during that first part of my cycle, and a neurologist put me on a diuretic (HCTZ) on the theory that they were caused by water retention. Every other doctor I tell raises his eyebrows at that, but does it ever work! Even on the HCTZ month-round, though, I notice I lose a lot of water after ovulation--enough to show up on the scale (several pounds). I've read that progesterone is a diuretic.

Soooo...I am wondering about what you said about changes in fluids. Could water retention be making my MG worse? I didn't want to up the dose of the HCTZ before because a higher dose gives me postural hypotension, but maybe the Mestinon would counteract that. I will ask my doctors if it makes sense to try it. Maybe the reason the progesterone helps during the second part of the cycle is that it's a diuretic.

Thanks again. I feel like if I keep at this, my doctors and I will figure it out eventually!

Abby

Sorry, I forgot about the Graves. It's not fluids per se but the change in fluids that affects electrolytes. For example, if you are dehydrated, chances are your sodium will increase. Fluid and electrolytes are complicated and it's best to talk to your doc, especially endocrine docs, about concerns. Endocrine disorders are known for causing electrolyte disturbances. It wouldn't be water retention making your MG worse but any associated changes in electrolytes from the retention that would (i.e., potassium).

Even on that drug, you need to drink fluids. What retains fluids are either hormonal issues or the kidneys (sodium). This is where the body is "funny." If you starve yourself, your body will retain fat because we need fat for fuel. If you don't drink water, your body will either conserve it or kick in some sodium to conserve it. Again, complicated little systems.

Having potassium at the same time as fluids has been implicated in lowering blood pressure. Those two "ions" work synergistically together.

Anyway, get the questions ready for your endo!

Annie