For Ladies Only - Is your TN or ATN attacks/pain more severe before, during or after your monthly visit from "Aunt Flo"?

Hello, again!

My ATN or Type 2 bilateral pain is x2 or x3 worse sometimes around my period every month. This morning, my menstruation is winding down for the month. However, the pain in my gums, cheeks, temples and teeth is a solid level 7-8, and is combined with a severe headache.

If it were not usually this way at this time of the month, I may consider going to the ER. However, I read somewhere one time that there is a link. Maybe this is a silly discussion due to that almost every malady known to man seems worsened at this time of month for many women.

Ladies, has this been your experience?

Best regards,

Stef

ever since I I got my lovely beast of TN....no more aunt flow. Wish I could help.

Found out I had TN 11/24/10....started having syptoms around 11/10/10

Yes, I typically have a couple of pre-menstrual pain days where the TN is exacerbated and I have a headache and general malaise as well. I just crawl into bed and pray for it to show up.

Lily

First off, Alisa, thank you for replying, anyway. I am so sorry that this came on you so suddenly and so young. The stress of dealing with the onset of TN would be enough to cause a delay in your cycle. It happened to me when I was younger and suffered with Chronic Anxiety Disorder. I hope you are receiving effective treatment.

Ok, Lily, I thought so. Thanks for validation. I wondered if this was common. Yes, it lays me out on the couch for a good day or two.

will i never thought that but aunt flo is here yes am getting my trgger in my mouth and cramps real bad !!

i never think that but sence you talking about it thats true will i just rub my neck real good my pain

goes away but i know that attack monster coming again am so scared but i just take it day by day

i hope you get well god bless sister

Hi, Stef. I'm new here, but saw this and just had to respond.

I've found that any type of pain -- stomach aches, regular ole headaches, sore throats, whatever -- tends to trigger TN attacks for me, and now that I've hit perimenopause, I'm back to getting those awful cramps that I remember from puberty. So, yes, it tends to be much worse at "that time" for me, as well. Somewhat relieved to know I'm not the only one. It does seem unfair, doesn't it?

Stef, I have TN1 and TN 2 and I never had triggers with my TN1. Once I started keeping the pain diary, my doctor said, well we finally figured out what your triggers are, HORMONES. My shocks were always around the time of my period. Even when the TN1 is under control the TN2 is much worse during this time. I asked my neuro and my neurosurgeon and they both said studies revealed that pain levels are worse during periods. Do you keep a pain journal? If you don't, start and if you do, put down your periods in the diary and if they are painful, heavy, when they started, etc. See, it's not all in your head! lol

Mary

Well, it's around that time again. All I can do is type. I can't talk, or eat. So, I'm here reading all of your comments. Thank you. So, I'm not the only one. Thank you, Sally, God Bless you too. Yes, Elkins, UNFAIR! Katie, I hope this does not become a problem for you. Mary, lol! Yep, not all in my head, all over my face and worsened by other things which aren't so lovely. Yes, I used to keep a pain journal. After it was dismissed quickly by two different male doctors, I stopped, but you are right. I need to begin again for myself. It looks like it is up to me to solve the puzzle. So, here I am, on the couch when I should be doing laundry and cooking dinner, typing about the pain seeming like it will crush both sides of my face, speaking with you guys online, and not to my girls because it hurts. I feel so guilty, and for some reason . . . . .I want chocolate. I suppose TN doesn't change everything.

Happy New Year's to all.

Hey, if you think of it, pray things go well for me at the Pain Management Clinic tomorrow.

I'm going to force myself to get up in a minute.

Hugs to all of my fellow sufferers,

Stef

Absolutely! My pain is always worse when I am ovulating and when I am on my period!

HOrmones definitely play a role! Lucky Us!

Well, welcome, Nikki.

I guess it's official. Aunt Flow comes bringing an extra bag of problems for us with her. Like you, it leave me a couch bound, and also a hermit (if people will permit me to be so). Welcome to our group! It is never too late to add your input on a post.

My Aunt threw something out there to me, which I have not tried yet, but I think I may try. She told me to get my hands on some topical Progesterone Creme, that it may help. I think I will try this to see if it lessens the even worsened problem. I will let you all know if it works at all for me.

I'm sorry that you are having such a hard time with your energy levels, believe me, I know how it feels definitely, but let us know if your OBGYN does come up with some therapy which helps with this.

Nikki Schwent said:

Hi Stef, I am new here so I'm a little late in this discussion but mine is always worse the days leading up to my lovely time of the month. As if the horrible cramps and fatigue feeling wasn't enough. I've been talking with my OBGYN to try different birth control options to see if that helps with the pain at all. I'm crossing my fingers that one will help. I basically turn into a hermit for a week every month. The only think I do is go to work and making it through the day uses up all the energy I have in my body. Its exhausting.

Funny that you brought this up Stef. I hope you don’t mind me jumping in on this . In my pain diary, started the day i was diagnosed, I tracked many things… One was hormone changes, period, ovulation etc. I have found that leading up to, during and just after “Aunt flo” I have the most extreme pain of any other time. It also occured to me we (women) tend to be stressed, agitated etc. during this time of the month. I also found that any other time I was stressed or upset my pain would strike. ie: Kids acting up. Raise in blood pressure times. I guess it makes some sence. Sorry I am rambling .

Well, for rambling, that certainly did make a lot of sense. Here is an article to back up which is the good common sense you have about stress making pain worse. It just stands to reason. http://findarticles.com/p/articles/mi_m0846/is_10_21/ai_86035122/

Anyway, yes, I was recently given validation by my Pain Management Nurse, that yes, hormonal fluctuations do indeed have an impact on pain. She advised that perhaps I needed to see my OB/GYN. I would if I was not already paying so much out of pocket just to try to manage my TN. Whew!

I didn’t know how many other women with TN and ATN experienced the increase in pain. Apparently, most all of us who still get monthly visits.

Stef guess what Yes menopause hot flash is a sure killer for my ATN. When one hit’s Im through . Have Doc checking blood level’s to see if going through that.Dang I have found triger’swith no pai relief hope fully soon. Does this help anyLOL BUt the Hot flash and ATN is no laughter!!

Thank you Stef for that link...it is certainly nice to have others agree with our hunches. I'm guessing high stress probably brought TN into my life ...I'm going to track my blood pressure daily for a while and log it to see if I can get a handle on the connection. I am also a bit curious. My blood pressure is fine normally, according to Dr. But my late grandmother suffered with TN and she had high blood pressure and died of a stroke .....all of her family died of either a stroke or brain hemorrhage. Probably too much information...told you I can ramble. lol :) There maybe some connection. I would rather know now!

I am curious as to what your OBGYN could/would do to help with hormones. Interesting thought. I may investigate. OHIP will pay for my visit here in Canada(thank goodness). I can share my finding with you as soon as I can get an appointment.

Stef said:

Well, for rambling, that certainly did make a lot of sense. Here is an article to back up which is the good common sense you have about stress making pain worse. It just stands to reason. http://findarticles.com/p/articles/mi_m0846/is_10_21/ai_86035122/

Anyway, yes, I was recently given validation by my Pain Management Nurse, that yes, hormonal fluctuations do indeed have an impact on pain. She advised that perhaps I needed to see my OB/GYN. I would if I was not already paying so much out of pocket just to try to manage my TN. Whew!

I didn't know how many other women with TN and ATN experienced the increase in pain. Apparently, most all of us who still get monthly visits.

I had an interesting thing happen: I've been struggling with an episode over the last month and the day my period started, the pain went down SIGNIFICANTLY. Anyone else have anything similar? I want to know why! So frustrating, the lack of research...

Ohhh are you ever so right on the money! I even just had a conversation with a friend of mine recently and was wondering if i should have that procedure as they say to "STOP THE FLOW". I wonder if that would help the situation. I am going to have a talk with my Gynocologist and my Neurolgist about that. It is that much more extreme that I would consider doing it.

Be well...Monica

I just talked to my gynocologist about this the other day. it seems that right at the beginning of the cycle many women’s estrogen levels take a nose dive. A estrogen DOES play a part in our tolerance for pain, so this would explain why it’s worse at this time. A friend of mine who has TN met another woman on anothe forum similar to this who’s doctor/husband had her to keep a pain diary. Upon doing so, and realizing that it ONLY flared at the time of her cycle, they had her to start an Estrogen patch. She says she’s been pain free since. My neurologist discounted this idea altogether and said that it was out of their “range” to prescribe me any estrogen or do any testing in that area. Sooo, I had my gynocologist prescribe me an estrogen patch. Most, but not all, of the time my pain is excruciating during the 4 days or so leading up to my cycle so she’s having me start the patch about 4 days prior to those 4 days (8 days total, prior to starting my cycle) and continuing the patch throughout. I could have sworn the pain was less this time, but i’m not willing to say that I’m sure that it was due to the patch until I have run this “test” a couple more times. Jeeze, I hope this works. Any relief is welcome. Today has been pain free, but after taking pain meds for the last 5 days or so constantly I feel really tired and disoriented. Darned if I do, and darned if I don’t. If I find that the future “test” runs show that the estrogen patch helps I will definately let ya’ll know.

I am currently on the pill (estrogen) to reduce my uterine polyps for three weeks. My Neurlogist and my Gynolocolgist both agreed to put me on an estrogen patch. They did this just so that the amount of estrogen in my system would stay more level and would not go up and down. But I can still feel more pain prior to my flow. So it isn't perfect but it does help.