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  • LithEruiel
    replied
    You know, I did find something that works. I take continuous birth control...I don't take the placebo pills, ever, so I don't get periods. I haven't had once since December and only had spotting briefly. My doctor suggested it, so you could ask your doctor about that...

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  • Toto
    replied
    I always feel bad around the time of my period and also during ovulation. It's terrible and I have yet to find a way to relieve the symptoms during that time. I want you to know you are definitely not alone.

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  • LithEruiel
    replied
    Beverly, it's very common for IC to get worse around the time of your period. Wish I could help, but the only thing that helped me before IC was Midol, but it has caffeine in it so it's not good for IC. Hope you feel better soon!

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  • Beverly001
    replied
    question

    Well it's that time of the month, today I started my period and I am in so much pain. I just got digaonsed with IC at the end of July. I have been in tears all afternoon. Is this normal? Or does anyone else hurt more when they are on their period. I don't even know what to do, and I am not looking forward to work tomorrow if I feel like this.

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  • Toto
    replied
    psuj9, I do remember that there are some hormonal treatments though can't recall what they are. A gynecologist told me years ago that they can give you hormone treatments around menstruation.

    It sounds like you eat a healthy diet already. If you almost never get headaches at other times of the month, then the hormone thing might work. The only reason I didn't get that treatment is because I get the headaches at other times with clear triggers. But migraines with menstruation is so common and there are a lot of treatment options. Taking hormones is no light issue and you might want to weigh the pros and cons of hormones vs. the triptans (or other treatments). From what I remember from the book (I don't have it now), some of the major triggers to stay away from (especially during periods), were caffeine, chocolate, MSG, alcohol, and aged cheeses. Things with fermentation processes such as yogurt can be serious triggers for some. Even healthy foods such as citrus fruits can be a problem. (so citrus is on both the migraine and IC diet, luckily. So are the other things I mentioned.) Of course everyone is different and it can make a person crazy to try the diet thing. But overall, what I've read is that in general caffeine is a problem for many health conditions, and MSG seems to cause a variety of problems. Chocolate is debatable, and what's strange is that one day in the month you might be able to eat chocolate, but at the time of menstruation, one small bite could contribute to a severe migraine. Time of day can be an issue for some people. For example, they can eat certain things in the morning but not in the afternoon. Crazy huh?

    I've read that triptans (abortive meds...thought Frova is being used as a preventative in limited doses) can cause rebound and my specialist said they cannot be taken for more than 9 days a month. (other research says even less, but I go by my specialist) Overall, what I've found, is that the meds that help migraine can't be taken too much. The "preventative" ones are best for those who have constant migraines (with occasional use of abortive meds). Most doctors really will say to stay away from the caffeine meds.

    The botox has worked well for me. I get a total of thirty shots, some of them in the forehead, temples, back of neck and shoulder. I don't mind needles so it's not an issue for me. The forhead is sensitive so that's where it hurts most. But it's not so bad. If you can endure IC pain you most likely could endure botox treatments unless there is the fear of needles. The botox shots last for about three months, the first two treatments usually don't work well as the next ones. For me the first two have worked well. I haven't gone for a third yet. The botox will also fill in some little wrinkles you have in your forhead (one good perk of the botox treatment ) Luckily my insurance covers it or else I couldn't do them. The botox definitely cut down on the amount of migraines I've gotten and also the pain level. My doctor told me that 70% of his patients have noticed improvements.

    My menstrual migraines are extremely resistant to all treatments, so I have to take the Verapamil daily at this time, as well as Naproxen during menstruation, and a Frova pill if they get real bad. So far this year, I've use very few of the Frova and my condition gets better. I'd say hormones for me are a serious problem. When I was pregnant I needed migraine treatments and it's rare. Also after I gave birth I suffered a lot almost daily. So it's clear hormones are one big problem. However, many people get more migraines than they thought. They assume it's only hormonal (as I did at one time). When they keep a journal (as I did) they realize there are others triggers as well. (just a recommendation for now to see where you are at as far as frequency)

    If you do a google for menstrual migraines, you can find some additional info. Also, on Amazon, if you type in migraines under books, you can read book reviews. Sometimes those reviews give a lot of information because migraine sufferers comment.

    Migraines are temperamental I found. Years ago I got them only like once or twice a month. Then I got them more and more frequently. So it's not out of the question to get them more frequently with age, stress, etc.

    Big hugs to all the sufferers!
    Last edited by Toto; 08-12-2011, 10:41 AM.

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  • psuj9
    replied
    Also... could you say more about the Botox? Where (presumably in your forehead / temples ?) did you get it? How long did it last? Did you find it to be helpful enough to continue? Thanks!

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  • psuj9
    replied
    Toto - oh my gosh! Thank you SO MUCH for your time and the wealth of info.! Although I have been getting headaches for most of my life, they are definitely getting worse as I age, and I'm finally feeling the need to do something about it.

    In the last year or two I have started "using" Excedrine to treat headaches. Caffiene does not seem to be a problem with my IC, but I'm afraid I'm definitely experiencing problems with "rebound" headaches at this point. I don't drink coffee, tea, or soda, so I'm not getting it from other sources. I try my best to follow the IC diet. This DEFINITELY helps to control my IC. I'm also a vegetarian, but this is actually quite challanging due to the number of fruits, veggies, seasonings, etc. that are on the no-no list. I'll have to check out the book you recommended to find out more about the headache diet.

    I am SUPER reluctant to try prescription medication, but I think I'm getting closer to that. Usually I prefer to use 'natural' alternatives. In this case, as the headaches are SO CLEARLY related to hormones, I just keep thinking that I should be approaching it from that angle. Maybe there is some transdermal cream I could try, or a low dose hormone I could take around my period...? I just haven't seen that mentioned much as a treatment/remedy.

    I'm printing your message to keep with me as I begin this research. Thanks again!

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  • Toto
    replied
    I do want to add that some research shows vitamin deficiencies in those who suffer from migraines. One is magnesium. (I can't take them because of IC) If you can tolerate magnesium it is worth a try. Also, fish oil is good for inflammation. Additionally, the B vitamins can help a lot I've read. However, for IC sufferers that may not be possible.

    For those who are looking for natural remedies, I did read that a vegetarian diet can help. There is some strong research that shows that the diet helps with "inflammation." (which could help with menstrual pain, headaches, etc.) There are good books out there on this topic. From what I remember, in dairy and in meats there are hormones. Those contribute to the hormones in our bodies, causing problems with inflammation. (I may not be saying this right but I do know the goal is to allow the least amount of hormones in our bodies)

    I want to add that I'm not a vegetarian and find it so hard. Despite the fact that evidence very strongly shows it can make a HUGE difference in arthritis sufferers and other people who suffer from inflammation (including headaches). For me it's a goal that I might try to achieve later. But some of you who are highly motivated and want a natural method might want to try looking into foods and pain.

    In whole foods there are some homeopathic oils. I find that rubbing peppermint oil on my temples can often ward off a mild headache. It's a good remedy. Also, if someone's posture is not good, simply straightening up can make a big difference. Heating pads and ice are good natural remedies.

    Many some vegetarians here can give some input or share experiences.

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  • Toto
    replied
    I've been suffering from migraines since I was a teen. They got worse as I got older, and now that I am 40, they are a problem. I'll share my story with the hope that it will help.

    Making a long story as short as possible, I used to just take 3 Advil and have a strong cup of coffee and that worked. Then I saw a neurologist and tried a whole host of medicines. What worked best for me was some of the antidepressants, which I hate by the way. But strangely, they took away the migraines. I gained a lot of weight and eventually went off them and just suffered and took whatever meds were over the counter. When the triptans got popular I tried those and took Relpax most until it didn't work so well anymore. I found Imitrex and other ones don't agree with me.

    Last year I was laid up for three months with an almost ongoing migraine. I was so desperate for help. I have many triggers (mainly hormones). Personally, I feel as we age our hormones changes and for some women that's a serious issue as far as migraines are concerned. Nowadays, I take Verapamil and get botox every three months. My migraines are very stubborn nowadays. I did take Nortriptolyne for a while and it did help with the pain. However, I packed on weight rapidly (for me that's not normal) and decided to go off of it. But it did clearly make a difference for me so I do believe antidepressants do have a positive affect. As for menstrual migraines I take Naproxen three days before my period 2 x's a day (at neurologists and gyno's recommendation). If you can't take Naproxen, another way they are treating the hormonal migraines is that they give you Frova (a milder and longer lasting triptan) three days before the period and have you continue to take it five days thereafter. (I could be wrong on this...you might find this information online if you google "menstrual" migraine) I take Frova occasionally when I have a bad migraine coming on. (usually before or during my period but sometimes at other times of high stress and weather changes) Frova works well but sometimes it takes experimentation with the Triptan family of drugs.

    I recommend a book called "Heal your Headache." It explains the migraine and recommends a diet plan (for those sensitive to food). The diet is VERY similar to the IC diet. Interesting... Though I do recommend reading a few books on the topic. Some doctors disagree with the one I mentioned, however, the doctor who wrote it is one of the best in this country.

    Also, for those who might look for a doctor, it is good to consider a "headache specialist" (neurologist who primarily treats patients with headaches). I found that the specialist knew most about headaches and current research and could offer me the best treatment (better than my gyno or primary care doctor).

    Here are some things to think about.
    1. Keep track of triggers. Could be menstruation, ovulation, weather, stress, lack of sleep, lack of water, lack of food, diet etc. For me it's all of the above with hormones being the worst. I had a friend who had severe allergies to certain foods such as strawberries and corn. Eliminating the foods completely helped to cure her migraines.

    2. People will migraines do have clear triggers and HAVE to treat their body and lifestyle differently than those who do not have migraines. (just like IC) If your sleep cycle is off, you eat some foods that trigger your migraine AND your period is coming, you can almost guarantee a migraine. The more triggers that are effected the worse the migraine. So keeping triggers at bay is key.

    3. BE CAREFUL of caffeine and avoid it if at all possible, except for an absolute emergency. I HATED this and only recently gave up caffeine. I used to take a lot of Excedrin migraine (with caffeine) and the neurologist said that is by far the WORST thing to do. Caffeine can cause withdrawal headaches. So can the overuse of pain meds. At one time I took too much Naproxen and that was making the headaches worse. So I weaned myself from all meds (not a fun process) and the headaches got better. However, I have to say that a strong cup of coffee can sometimes ward off a migraine. I don't recommend this unless there is an emergency and IF the person can have caffeine. Many migraine meds over the counter contain caffeine.

    4. Watch the weather and take care of yourself if the pressures will change. You can plan for bad weather and try to eliminate other bad triggers at that time to keep the trigger level low. (such as eating migraine foods and sleeping too late)

    5. Consider getting food allergy or "sensitivy" testing. Or try to test yourself at home keeping a diary. For some, one food, such as banana or yogurt, can cause severe, ongoing problems and simply eliminating those foods can make a MAjOR difference. This is difficult but well worth the effort.

    6. Stress is a severe trigger for most sufferers. For me it's almost a guarantee of a migraine or tension type headache. I find if I keep my stress levels down (as much as humanly possible) that I get less headaches.

    7. Exercise (for some it's a trigger). I get less headaches if I exercise and sometimes it prevents a mild headache from getting worse. Because of IC I use an elliptical machine and that seems to work pretty well. I found the key is to work up a sweat and get the heart rate up. Though I have heard that some people get headaches from exercise. So be cautious.

    8. Birth control can trigger migraines or make them worse. I really wanted to go on birth control and have less periods. But a few doctors told me it's not good to do that when you have severe migraines. I'm hoping someday to do it anyway because periods are a killer for me with both IC and headaches. If you just started birth control, there is the possibility it's triggering worse headaches. Just a thought.

    I wrote a book here and hope something I said might be helpful to someone. My sympathy goes out to all of you who suffer. Sometimes I don't know which is worse, IC or migraines. And I can't help but wonder if the two are related.
    Last edited by Toto; 08-15-2011, 02:02 PM.

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  • psuj9
    replied
    So glad to find this thread! Came here hoping for some help with this very issue. I, too, have been getting bad headaches on or around the first day of my period. These used to last for a day or two and clear up, but recently have been continuing throughout my period--sometimes getting especially bad again at the end. Since my period lasts for 6-7 days, this is obviously a major drag. I am coming up on 40 this year, and since the headaches are especially bad around my period, it seems that they are obviously hormone related. I don't really want to go back on birth control, but has anyone tried any of the herbal menopause/peri-menopause remedies? Becoming more and more tempted by this, but super nervous to take the leap b/c of IC. One that I found online recently contains the following:

    Black Cohosh, Red Clover, Kudzu, Passionflower, Chasteberry, Wild Yam, Ashwagandha (an Ayurvedic herb)

    Thoughts?

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  • LithEruiel
    replied
    Thanks! I'll ask when I go to the doctor.

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  • Meggy1
    replied
    Hi Ashley, I think it would work on PMS headaches. I actually started taking it a few years ago because the headaches would get so bad that even taking pain meds like vicoden didn't help. I eventually stopped talking it because I hadn't been getting the headaches and figured I didn't need it anymore. I was wrong So when I went back to my dr this past September he put me back on it. Normally takes 4-6 weeks to build up in your system to work which is why I had the Imitrex "just in case". While I don't like taking meds everyday for long periods of time I guess this is one I don't get to make the decision about.

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  • LithEruiel
    replied
    Hi Meggy...sorry to hear your daughter has IC so young. I'm sure that was really tough to go through...it was hard for my mom before I was diagnosed too and I was 24!

    Anyway, I didn't know that Verapamil was used for migraines. I don't know that I need to be on something long term since I get migraines so rarely, but does it help with the milder PMS headaches too?

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  • Meggy1
    replied
    Hi, While I don't have IC, I do get PMS headaches/menstrual migraines. My primary doctor put me on Verapamil to try to prevent the migraines. While Verapamil is a blood pressure medicine that is also used for migraines.
    "Verapamil is a calcium blocker, which prevents blood vessels from creating pressure before an unfortunate migraine attack." It has taken two months to get to the right dosage level but it has helped. I also have Imitrex to take at the first sign of the headache which helps. Not sure how these meds would interact with any IC meds you are on or if it would irritate your IC but couldn't hurt to ask your doctor. Good luck.

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  • LithEruiel
    replied
    Thanks!

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