Migraines

[Fwoods]

I was wondering how many people had migraines with fibro.?? I suffer from migraines and they seem to be getting worse. Seeing spots and body shutting down for most of the day or longer. I just began taking topamax 25mg and have had a lingering headache since I began taking the meds which is just over a week now. I am just feeling a bit frustrated. Does fibromyalgia make your migraines worse?

 

[Nexi]

I don't get the migraines but I do get the cluster headaches this time around...sucks! I have had migraines in the past and those are pretty unpleasant. I have also just started the Topomax 25mg 2x day for them. I agree with you, I have been having an ongoing lingering headache but if you know anything about cluster headaches you would definitely take it over full blown episodes any day. The episodes still have been happening towards the end of the 12 hour period of a dosage. I am supposed to be going up to 200mg 2x day which should completely take care of my headaches. As for Fibromyalgia making migraines worse...yes it can just because of the pain which triggers tension that we naturally carry in our shoulders and this of course connects to our necks and on up to our head. Relaxation, light massage for some, yoga, heating pad, the list goes on and on. Try to find out what works for you to alleviate the tension, pain and don't forget the stress. Hope this helps Fwoods....let me know how the Topomax works for you, I am upping the dosage this week to 50 mg 2x day. Take it easy

 

[DK_engineer]

I had chronic migraines about 8 years before I was diagnosed with fibromyalgia. After struggling with nearly full-time migraine for about 18 months I found I was able to reduce the frequency of my migraines to every other month or so by avoiding added sugars, flour and highly processed foods. I take Maxalt when I feel one coming and that usually works.

About 6 months before my fibromyalgia diagnosis the migraines became chronic again. The doctor gave me Topomax - it worked great on the headaches but I couldn't tolerate the side effects. Now I take Butterbur and feel very fortunate it works for me.

Sometimes I wonder if the chonic migraines came back because fibromyalgia was beginning to affect me. However I have not noticed that the migraine pain is worse post fibromyalgia. Migraine pain is distinctly different than fibromyalgia pain for me.

On the other hand I hada sinus infection a few months ago and the sinus pain was definitely much worse than pre-fibromyalgia sinus infections.

I hope the Topomax works for both of you!

 

[Fwoods]

Thanks Nexi and Dk engineer for the quick response! I've had migraines for about 4 years ever since I gave birth to my 2nd son. Cluster headaches are terrible!! I am getting more frustrated with migraines and fibromyalgia. I am very new to this form of illness? Arthritis? Whole body malfunctionitis??? (yeah... That's a word.. Lol!) So here is the kicker!! I got a major migraine over the weekend and called my neurologist today to ask about the daily headaches and the slight insomnia I have had since taking topamax. I received a call back from the nurse and she told be to stop taking topamax and wait for her to call back with what the doctor would like me to do...... I'm still waiting and still in pain and still ridiculously awake.... So awesome.. �� we will just wait.... And see.. ����

 

[DK_engineer]

Urg... Frustrating! Hopefully the doctor will have some good options for you.

Btw, malfunctionitis is an awesome word! It could describe some of the gremlin habitats - I mean machines - here at work

 

[Nexi]

Awwww...you poor thing Fwoods! My goodness, I certainly hope that you get some relief soon.

Yes, DR Engineer, I follow an extremely strict diet. No sugar or sweeteners, gluten free, no red meats, dairy free , soy free, and no processed foods. When I started eating this way I thought it would be the "cure" and it almost put me into a major depression. I was so impressionable many years ago when I believed everything I read. I was so naive, I wanted to believe so badly it would take my pain away. Not that I am saying you are claiming this...I am just stating what happened to me. What I did find when I changed my eating is a lessening of the intensity of the pain. Now whether that was due to the change in my eating habits, I couldn't prove but what could it hurt? It did make me feel like I actually had some sort of control which is saying something with this disease.

 

[DK_engineer]

I've had a similar experience Nexi, dietary changes can only take me so far. A lot of people oversell restrictive diets these days. When I was first diagnosed I had a lot of people tell me, if you would just stop eating (fill in the blank) you won't have fibromyalgia anymore. I know they meant well, but it did annoy me a little

You know, its funny, I framed my diet in terms of avoidance, but that's only a small part of the changes I made. The biggest change was embracing really good food - lots of fruits and vegetables, meat and milk from locals farms, eggs from our chickens, that sort of thing. I wonder why I tend to present the restrictions and not all the good stuff.

Anyway, I agree, if it seems to help somewhat I keep at it. At least it gives us a little bit of control over this crazy rollercoaster

 

[Nexi]

Exactly DK Engineer! I am right now trying to get a hold of my stress levels. I don't know how you are but my pain can go through the roof if my stress gets out of hand. What can be so earth shattering? My hubby is leaving for the south and I am staying home. It is a stressful time of year to fly from where we live, in the Arctic circle. Mandatory to wear our full winter gear when flying. I really can't take traveling right now. A couple of weeks ago I had to travel on the ice road, omg! My hubby forbids me to do that ever again, it was way too rough. So, I get to sit at home and worry...Ativan will have to be my buddy for the next 24 hours.

 

[DK_engineer]

Oh yes, stress has a much greater affect on my pain than food does. It can either be the kind of stress that makes me feel worried or just being startled. I think it is probably anything that triggers my adrenaline response. The more I get triggered the worse the pain.

You really have a unique experience living in the artic circle! Things we take for granted down south require a lot of planning and special equipment. I hope your husband's flight goes smoothly; it must be hard not to be able to go with him.

Most of my stress is related to being responsible for supporting my family. My husband and I mixed things up a little - I've been the breadwinner and he's been the full-time dad. Luckily for us, when fibromyalgia hit me last summer, he had just started working full-time as an apprentice electrician. So maybe we will switch roles after we get the kids through school.

When things are really crazy at work I've found that taking a few deep breaths helps (it is so easy to forget to do this). When I wake up in the morning I usually spend a few minutes just focused on breathing. If I can zone out for a bit I usually feel a little better during the day.

 

[Nexi]

I am sooooo happy! His flight was grounded due to weather. And since he will be missing all the connecting flights he doesn't have to go now! Every year our company we work for never learns to start getting us out to our yearly conference earlier. I don't care, I can't go anyway since flaring...but my hubby not going is a huge bonus on my stress level s.

 

[DK_engineer]

Yay! Good news

 

[Nexi]

I am going to try your breathing techniques...it couldn't hurt, right?

So, that's kind of neat, you being the bread winner. I suppose nowadays it shouldn't be but in my world I don't here about it happening a lot.

I am originally from southern Canada but have been living in the Arctic circle for a while now. The truly nice part about living here is that life is very laid back. We could own a vehicle if we wanted to but if we needed to get anything the store is literally right across the road from us, same with the gas station, and the post office, it also has hardware, clothing appliances especially, furniture. ..not like a huge selection like the south. More advantageous to own a Skidoo, ATV, and boat. So, the stress of traffic, running around and shopping, and all of that is gone...very relaxing when you are exhausted and you don't want to always say "no" to family and friends that want to visit or go for lunch. I don't know about anybody else but I would always push myself to do whatever I could even if it meant coming home and being so ill for the next 3 to 4 days. This time with my flare, it is so much worse...I couldn't even if I wanted to, I would be scared to be down south...I'm afraid I would try anyways. Why do we knowingly do this to ourselves?

Has anyone else here had more than one flare?

 

[DK_engineer]

I should give credit for the breathing technique to Zolisindigo - she was a young lady from Moscow, Russia who used to be on this forum. It took some practice before I figured out how to slip into the zone. Sometimes when I wake up in the early morning hours I can use this technique to fall back into a deep sleep.

Your life in the Arctic does sound very nice. I have always wanted to see the northern lights.

Regarding flares, I originally went to the doctor because of sudden, intense pain. In the space of a week I went from a normal level of activity (including playing soccer) to being unable to open doors, drive or walk to the end of the block. What a shock! Ever since then the pain goes up and down, but I don't really have a sharp break between high pain and low pain. For example this week my pain kept building up day after day until today I could not go to work. Even my tongue hurt (?!). So I called in and rested. Now I feel less sensitive.

When I way over do it the pain gets worse but the fatigue is more disabling if that makes sense.

Unless I am having one big flare that lasts for months this is just my new reality.

 

[Nexi]

Fatigue, oh yeah, I hear you loud and clear there. So unpredictable. It is utterly frustrating.

I have constant high pain and I know that I would not have that much if it was not for the cluster headaches. I have anywhere between 3-10 everday. To explain what they are is difficult because it is long winded but essentially if you have had a migraine it is similar but worse. Pain is more intense, comes on a lot faster, harder to deal with the pain, can last between 5 minstry to 3 hours but during this time all you are thinking about is doing anything to stop the pain. So if I didn't have these all day and night I would probably be in much better shape.

Your tongue hurts!!! That is just not right DK! How long has this been going on for you? Is this your first run in with Fibromyalgia?

 

[DK_engineer]

I got diagnosed last May. I was probably having symptoms before that but at a level where I just compensated.

Lol the tongue thing is new. Sometimes I just have to laugh because these symptoms seem so goofy.

Cluster headaches are terrible. My husband got cluster headaches for a while a few years ago - I could see he was in awful pain and he could not stop throwing up. Now he just gets the occasional migraine. It must be so hard on you to have them so often!