Hi Ladies! This past fall my pain went through the roof and I was no longer able to control it with what I had been doing. So my doc put me on a new regimen of meds and I am finally feeling better. My pain isn't completely gone but it is manageable . I can function again. Except...that time of the month. When IT comes I have horrible breakthrough pain and nothing I do controls it. It seems like the meds that normally work the other 3 weeks of the month do nothing for me. And it gets really bad:in the bed, not able to eat, drink, talk. etc. So I am wondering if any of you ladies experience this also and what you do to control it. I asked my PM doc once about it and all she said was" look forward to menopause". Really!!??? It seems like there should be something we could do, some kind of hormone therapy, I don't know, something!!! Am I just to be thankful for the 3 good weeks I have and accept that I will have excruciating pain the other week? Thanks for y'alls input!
I just noticed this month how bad the pain got when i started. ya know it really makes me think because it seems like only women have TN is this a hormonal problem? I know that kinda may sound off base but its worth looking into I've wondered that several times and wondered if i went on the pill if i would feel any better.
Thanks,jstagrl29 for your comment. I really think it must be something related to hormones. But I just need to find the right doctor to help me figure it all out. I think I know more about TN than my GP and like I said before, the PM doc didn't help either. I have heard of hormone therapist; maybe that is something to explore.
By the way, more woman than men do get TN but men do suffer from TN as well.
YES! The few days leading up to and the days during my period, my pain is always much worse. Matter of fact, that's how i know it's coming now *laughs*.
I mentioned this to my dr, and he said it wasn't uncommon. The added stress doesn't help either...
I"m glad you asked about it...i'm glad to know it's not only me. (or just in ''my head')
~Mistee
Oh my I feel the same way and one of the neurologist I saw said yes it is hormonal but never said why last year I had a baby and the whole time I was pregnant I never had pain thank goodness because I could not take my meds my pain usually start getting worse a week before I start so I think there has to be some kind of imbalance in our hormones if u think about it tn usually happens to woman so is something going on with our hormones that is causing it inflame/ or cause the nerve to become damage I think the need to do a study on this
Karen what combination of meds r u on I feel as my trilpetal is not working as i have been getting some lighting strikes which i have never really have when this all started It was the burning achy he sent me to a pain dr but i am not ready to have a needle injected into that area......
I am so glad there are others that experience this. When I first posted this question only jstagrl responded and I thought, I must be weird if only one other person felt the same way. But it is nice to know I am not alone. Now I just wish we could figure out what to do about it!!!
Ayre: I am taking Trileptal also: 1200mg a day plus Baclofen 20 mg 3 times a day, Nortriptyline 50 mg at night and MS Contin 30 mg twice a day. This combo has really helped me except you know when ;( I was on other meds :Topamax, and the other ones I am on now. It worked for a couple of years and then all of a sudden just stopped working. I think that seems, from what I have read on here, that is the nature ofthis beast. You find something that works and after a while it quits and you have to start all over again and try something else. FRUSTRATING!! I have had nerve blocks and sometimes they help and other times they have made me worse. I only go if I am very desperate because I don't know if it will help or not.
Back to the main topic: when I can get the money, I am going to look into going to a hormone therapist and get my hormones checked along with my thyroid because I think that isn't working right now too. Y'all let me know if you figure anything out that helps with this!! I will do the same!
ayre said:
Oh my I feel the same way and one of the neurologist I saw said yes it is hormonal but never said why last year I had a baby and the whole time I was pregnant I never had pain thank goodness because I could not take my meds my pain usually start getting worse a week before I start so I think there has to be some kind of imbalance in our hormones if u think about it tn usually happens to woman so is something going on with our hormones that is causing it inflame/ or cause the nerve to become damage I think the need to do a study on this
Karen what combination of meds r u on I feel as my trilpetal is not working as i have been getting some lighting strikes which i have never really have when this all started It was the burning achy he sent me to a pain dr but i am not ready to have a needle injected into that area......
I can’t believe this topic is up here and i will explain why. I am almost 45 and have been experiencing a few premenaposal symptoms the last few months and sure enough just before that time it hit me this time so hard. Christmas night was the worst spell I have had Since being diagnosed a few years ago. If this is any sign as to what I can expect, god help me cause nothing helped with the pain and I couldn’t function at all for days.
Oh wow Karen you are SO not alone on this one.....this last round I spent the entire time on the sofa, three days of the worst feeling imaginable. I get terrible TN pain for the few days prior to it, then when it is here, I have the pain plus my body feels as if it has a cross somewhere between the flu and being poisoned - I mean just SICK, and then throw in a headache as the day progresses, because I have a VP shunt in my head, which drains cerebrospinal fluid, but my body is also draining off all of its excess fluid, so I get too little CSF up there. YIKES.
While that one was particularly bad, cut it down to one day on the sofa and that's about right. I have tried to tell the OB/GYN just how bad it is and she just looks at my with no comprehension. I share your plight and at 47 have shared it at varying degrees for years. You look really young so, presuming that, I'll tell you that it does change over time - sometimes you'll feel like it has become a thing of the past, and who knows, it very well may - mine, unfortunately, again worsened with time.
Best of luck - I hope that you are smarter than me and find the right treatment for your monthly monster. Let us know how it goes.
Lily