Migraine

Hi all,
I'm just frustrated and don't know what to do next. I just posted in the medications folder about my newest preventive. I don't know if its going to work out, since the side effects are getting wierd. I called my neuologist's office this morning to report the side effects and am waiting for a call back. This will be the 6th preventive I've tried. I don't know if I'm just sensitive to meds or what. I'm beginning to wonder if there is a drug out there that will help me. I know there are a lot more to try, but I don't know what to do. I see my neuro in about 2 weeks and I may just have to hang in there with no preventive until then.

I am starting to work on keeping a more detailed migraine diary and work in some more exercise. I am wondering if some of my headaches are from stress and tension, rather than all of them being true migraines. Reducing stress needs to be a priority for me too. I'm wondering if medications are only going to be a partial solution for me. This has been a difficult conclusion, because I think I was really hoping to find that right medication that would make these headaches either go away or become much, much less frequent. Now I don't know if thats realistic or not and its really depressing.

Peggy

((Peggy)),

Boy, can I relate to your pain! It's so hard when the medicine doesn't have the effect we wanted and hoped for! I'm having to learn a lot about patience - patience to see if a med is the right one for me or not, patience to endure side effects for a while, patience to let my doctor think through what's best for me, patience with me for my lack of patience!

You are right - it does get depressing when we realize that in spite of the meds, there are still so many things that we have to do. Sometimes you just want to call a big time out from life!

Peggy, I can only share with you as one who is in the trenches, wallowing around in the depression and doubt myself, but I have to believe that there is hope - I see it when I read other people's entrys in this forum. I believe in hope because I know that there is a good plan for my life which will give me a future and a hope! I believe in hope because everytime things get the roughest, someone comes a long to hold out a lifeline to me - through a hug, a kind word, their presence, an affirmation, etc...

That's why focusing on the things that I am grateful for is so important to me. It's not because I am a Pollyanna who always sees the glass half full - no, I'm just the opposite. I get ensnared in depression and dark thinking and can't imagine why I should have to continue living like this. And the more I look at it the bigger it gets, until all I want to do is lie down and die.

You are not alone! Let us be your lifeline when you are frustrated and depressed. I wish I could give you a big hug right now, but virtual ones will have to do! We're in this together - we've got to keep each other going. When one doesn't have enough hope for the day, then someone else can share their hope with them.

As long as you are confident and comfortable with your doctor, keep giving him/her a chance to find the right fix for you. Be honest - be persistent!!

Wow- I'm sorry if I sound like I'm preaching to you - I just feel for you so much!!! You mirror my own feelings, and I know that I freqeuntly just need a cheerleader to get me over the next hurdle!

Hugs,

Cyn

Hi Cyn,
Thanks so much for your kind words of encouragement. You are right, this process takes patience. I've had a good amount of patience for awhile, but I'm running low on it now and I've got to get it back. I guess I just don't want to go back to how I felt on the Topamax, which was lethargic, depressed, and I couldn't concentrate on my work. I also had acid reflux on it and a cough. All these things went away when I stopped the med. I didn't realize how bad I felt on it until I went off of it. I guess it was a blessing when it suddenly stopped working for me. I don't want to get on another medication that is going to make me feel this way.

You're right also that its good to be thankful for what we do have. And I realize that there are only certain things that I have control over. So now that I'm starting to realize that medications are only a partial solution, I'm trying to work on some other things to try to change my situation. I'm still struggling with depression, but I'm working on getting more exercise back into my routine. I've bought some DVDs to do at home. Now that I've got more energy from not being on Topa, I can actually do more. I need to take more time to learn how to relax so that I can help alleviate some of my tension headaches. I've already been getting massages, but I may get them more often.

As for my Doctor, I've only seen her once so I'm still trying her out. I'm hoping that it will be a good relationship. My next appointment is in 2 weeks and I have a lot of things to ask about.

to you! Thanks again for your words of support!!

Peggy

I've got smooshes for you, too!

Did your doctor ever call back? A lot of meds shouldn't just be suddenly stopped, even if you've only been taking them two weeks. It's important to work with your doctor to get tapering instructions. If your doctor hasn't called back, I'd say call again. I know it's the weekend, but she might be on call. Make sure you point out that the medication appears to be giving you a rash, and that you're concerned about making sure you stop the med in the safest way in the meantime between now and your appointment two weeks out.

Hi Peggy,

Like Cyn, I feel your pain. I'm in the trenches with you and so many others here in our forum family. Medicines are only part of the overall solution and, you're right, it takes time and a lot of trial and error. That migraine diary definitely helped me with my migraine battle. Also being diligent to look at all possible triggers and influences, like lights at work, carrying all those heavy books and computer bag, foods, sleep patterns, etc.

For me, it took almost a year to finally get my migraines under control back when I was first diagnosed. I had to change a lot of things in my life, but it was worth it. Now with my battle with Hemiplegic Migraines, a new sage begins above and beyond the migraine battle.

But like Cyn says, there's HOPE. On those days when your in pain or frustrated, focus on the smallest comforts, whatever brings a smile to your face. That certainly helps me.

Wishing you a pain and migraine free day, Tonya

Oh Peggy dear ,

I am sorry you aren't hitting that path to improvement like you and we all have been wishing for. Can you reschedule your appointment abd be seen sooner? This is such a hard waiting game to play. Which really stinks as I don't believe any of us are wanting to be signed up to play a game like this!

I know that at the clinic, we are always told that lifestyle changes can really help with our migs. Doc always sugests exercise, routine sleep patterns, not missing or delayin meals, even alternatives to treating pain. Like chiro. massage, or accupunture. But these are just to supplement your treatment.

I am prayin your new doc will get you on the right meds soon. You need some relief! Keep letting us know how you are holding up. Will be thinking of you

Hugs

Hi Peggy -

I feel your pain and frustration! It's hard to be working so hard to find a solution and there hasn't been one, yet.

I do want to chime in with what Alaura said, that the lifestyle changes and learning to really relax and practicing relaxation, have been the best things for me. I've read many times that a 50% reduction in Migraines is considered a good result for a preventive. 50% of a lot of Migraines can still be pretty many Migraines! Regular, intentional relaxation (biofeedback, yoga breathing, meditation, guided visualization, etc) can also reduce Migraines 40 - 70%, so combining medications with regular relaxation to calm down your nervous system is most effective.

I hope you get some relief.

- Megs

Thanks everyone for your replies. I never heard back from my Dr.'s office on Friday, so I decreased my dose of Lamictal back to 25mgs from 50. The rash had gone away on Friday afternoon, so I felt like it was best to just decrease the dose rather than stopping the med. I don't know for sure that the rash was caused by the Lamictal since I do have allergies. But I was not happy about not hearing back from them because I called twice and left messages.

As hard as it is to do, I know I've got to make the lifestyle changes. Megs, your information is very interesting. I really didn't know what to expect when I started migraine treatment. I can see where a 50% reduction in headaches is more realistic from a preventive medication. There is no cure at this time and there is only so much a medication can do especially when dealing with side effects. I think you are on to something with the relaxation being beneficial to calm down the nervous system. My migraines spiraled out of control right after a very stressful time in my life and I've always thought there must be some connection even though I had some headaches before that time.

Thanks everyone for your support and information! I am so grateful for this forum!

Peggy

Peggy,

I'm right there with you. I understand the frustration and disappointment every time you try a new med and it doesn't work. Or you try a new doctor and it doesn't work out. It's so easy to get frustrated and depressed. Some days are worse than others as we all know. Like today for me, not only is my head pain about a 6/7 my neck is also hurting me so badly I can't turn my head. There always seems to be something.

I get what you're saying about making lifestyle changes, and I know that's a challenging thing to do. I've been telling myself I need to make drastic changes for months now and I can't seem to be able to get to where I need to be.

I hope you've talked to your doctor today and gotten some answers.



Meli

Peggy,
Wow, your first post on 11-6-09 really hit home with me. The same thing has been happening to me and yes, it is so frustrating. I am so sensitive to many meds. Seems like the side effects outweigh any good the medicine does and I end up having to get off. And I don't have the money to keep trying all these different meds. Right now I'm on an antidepressant that is making me feel worse!!! And I just had to go off of another med that helped a lot with the depression and fibro, but made my migraines worse.

And going off these meds isn't fun either as you well know. That takes time and patience.

I can also relate to the stress. I had gotten to a point where my migraines were good and I was happy. Then something happened (neighbors) and it upset me and the cycle started all over again. You and Cyn are right-it is depressing!!!

Especially when you cannot change it! When all you can do is be thankful even in the bad times. That is the hard part. But it has shown me how much stress does play in the management of my migraines.

I can really relate about the doctors too. I don't even have a doctor other than Dr. K cause the other ones don't call you back and don't seem to care. I couldn't deal with it anymore.

Well, I was going to post a pity party for myself today but I'll just refrain and try and help instead. I feel your pain and depression, I really do. Today is a really bad day for me! But I will be thinking of you, Peggy and Cyn, and praying that there are brighter days ahead for all of us!!!

I pray a cure for these migraines would be found!!! So NO ONE would have to suffer one more day of pain and depression!!! Perhaps, the New Year will bring that prayer request to all of us!!! What a wonderful Christmas present that would be!
Pam