Migraine

Seems quite a few of us have had a rough couple days, so I almost hate bringing up more. But I gotta let it out I guess.

The last full week has been nothing but constant migraine. After the first couple days I pretty much figured out what was going on.. 3rd month in a row now.. The full week before I start my monthly girl thing. Well I finally started Saturday, and that day had no migraine, but it was back with a vengance Sunday and continuing today.

Like I said this is the 3rd month I have had migraines the full week before AND the full week after my period starts. Thats not to mention the remaining month having 2 to 3 migraines per week.

I feel SO out of control and SO helpless! Most of the migraines have only been the migraine with aura, not my hemiplegic ones, so I should be thankful I guess. I just cant deal with the constant pain. It gets hard. Shoot by now my scalp is SO tender! I try washing my hair in the shower yesterday and it about brings me to tears.

I guess the hardest part is not having anything to take to help me. My neuro says only midrin or narcotics.(I cant take triptans etc) Narcotics make it worse, and have the same effect that my Midrin does: drowzy and loopy. I cant take meds like that during the week while my DH is at work. I have kids to take care of and to drive to and from school/activities.

I have looked all over not only Vancouver but also nearby Portland Oregon for a pharmacy that has Gelstat, as I want to give that a try. No one seems to carry it, though Walgreens said they would check into it to see if they can try to supply it. Guess Im gonna have to just bite the bullet and order it online. I was hoping to find it locally, as the shipping costs as much as the med!

Ok I will get off my now. I just needed to vent.

Tawsha

Have you tried contacting GelStat directly to find out who in your area stocks it? I just went to the website, to see if they had a "find in your area" kind of feature to click. I don't see one, but they do have contact information, and at the bottom of the contact screen it says "If you can't find Gelstat in your local Pharmacy - ASK them to get it - They can ! " So I wouldn't imagine Walgreen's would have trouble ordering it.

Now, enough o' that. The important part of my post is to deliver your whole herd o' hugs!



Hang in there!

Oh, don't you HATE not being able to take triptans? I'm a hemiplegic migraine person too, and for awhile the triptans had been restricted, then at some point one of my doctors said, "Let's give them a try". I assumed the risk, and found that if I took one Amerge, two T3, two Aleve, and a Zofran, i could pretty much stop an escalation of symptoms in its tracks (and not be too groggy to walk around). Of course, it didn't stop the chronic daily pain (so fun to walk around at a pain level of 6 or 7 all day, isn't it?), but at least I had a way to knock back the devilishly horrible ones.

Well, new doctor, new regimen. No more Amerge. No more T3. I understand the reason. I even appreciate that this doctor does not want to see me drop dead of a stroke. But sometimes I think it'd be worth taking the risk just for some RELIEF!!!!!!

I don't think anyone who hasn't been there can truly appreciate what it's like to wake up to (or by) pain every single morning. There are no words to describe how discouraging it is. I secretly try to think of myself as a hero just for getting out of bed in the morning.

Therefore, you are a hero too.

I recommend a little private ranting and raving. I find it helps when I'm home alone to use the F word a bit - then I can usually calm down and think about what I can actually do to help myself. You're taking steps already, so good for you. There's nothing to do but go on. Sometimes just moving on to the next minute or hour is an act of courage.

Wish I had something practical to recommend about the meds, but my regimen is totally different and I wouldn't know where to start. I just thought I'd try to help with the venting part.

Hang in there. You can do it.

Lynne

Tawsha honey so sorry it's so bad. I sure hope you can find the gelstat and it helps. Sending you lots of love and hugs and hope.

If your hormones are causing lots of migraines, and it's a change from when you were younger, you might read about The Wiley Protocol. Bio-mimetic hormone replacement. The idea is to give you the hormone profile of a younger woman. I know this is controversial - not FDA approved. But it is working well for me. Has reduced my migraine severity a lot. See if you want to talk to your doctor about it.

I hope things get better soon!

Megs

You sound like someone with a lot to do and you drive yourself to get it done, and frankly, you must be a very strong woman! I'm so sorry about your headaches- I don't know what I would do if I couldn't take triptans. But I know there must be other options to get you out of the pain you're in. Please let us know how you're feeling later!

Valerie

Tawsha, don't you feel bad for a second that you needed to vent. (Of course, I say that but I felt a twinge of guilt for the same reason when I posted last night. ) This daily pain thing really gets old, doesn't it??

I gave up and ordered the GelStat online from amazon.com. You're right that the shipping isn't cheap. You can order it directly from the Gel-Stat Corp on their website, but I think the shipping cost may be more or less the same as amazon. I couldn't find it anywhere up here, either, though I didn't look too hard.

I wrote a poem last night to enter in the poetry contest, which I'll link for you. I think you'll be able to relate to it since a lot of it's about daily pain. Like Lynne said it's hard to know how awful it is without being there yourself. I wish none of us had to be heroes though! Poem is HERE.

My heart goes out to you. I wish none of us had to suffer like we do. Wishing doesn't change things though, does it?

Love and hugs from your neighbor to the north.

Tawsha,
I don't know how you do it. I read your post and the amount of daily pain you are in and what you deal with and you amaze me. I don't know where you find your strength. If you need to lean on us, lean all you want.

Meg brought up a good point about the Wiley Protocal. Using Frova for menstral migraines was off label and non-FDA approved for some time too. I'm not sure that it is approved yet. That's what I had to use for mine. That would not be an option for you. Call you GYN and talk about it. The sooner the better.

Take care Tashwa.

Cindy

Aww thank you all! Im just in tears. I appreciate the support and words so much! I just dont know what I did without yall! It truly helps having friends who understand!

Droolie, Thats an interesting idea! I called all the major pharmacies and a couple of mom and pop ones around here. The only one even willing to check it out was Walgreens. So Im to bring the printoff I made off the gelstat website to them and they will see what they can do. I guess Bi-mart used to but cant anymore for whatever reason.
I think its not a matter of "they can" its a matter of IF they will! tee hee. anyway ty for all the Droolie hugs!

Lynne, I hear ya. No abortives is rough! I would LOVE to have some private vent time! Tee hee but Im rarely home alone, with homeschooling 2 of my 4 boys!

Megs,
Thanks for the article I checked that out, though my drs swear its not a menopausal thing, as I am only to be 31 next month. I think it has a LOT to do with the surgery I had in 2003. I had a tumor that caused a torsion of my tube and they removed the tube and overy on my right side. Things have never been the same since. Again my drs said that would have no effect on my cycle. I am very regular, its jut that my migraines are getting worse than ever during that time. I always got a migraine during that time but never to this extent. Would I even consider it if Im not menopausal or have had a hysterectomy? Hmm more questions to ask my neuro I guess.

oh MJ and Cindy, ya snuck in on me lol I left my screen up for a LOONG time tee hee.
Val, Aw ty for your kind words! I do wonder what it would be like to be able to take Triptans. I like my Midrin, it takes the edge off though rarely takes it away, but I only get to take that once in a while!

MJ, Yes it gets soo old! I never thought to look on Amazon for the gelstat, I will check that out too, as I need to place a book order anyway!(though Im still gonna try to get my local Walgreens to start carrying it!)
I read your poem hun! It made me cry! so touching! My heart goes out to you too hun! I know you have really been through it alot yourself lately

Cindy,
Sometimes I dont know either where I get it, I guess its called being a momma bear. Just gotta do what you gotta do to take care of the kids! I couldnt do it without a wonderful loving supportive hubby and very helpful boys though! OR without all the love and support here on this forum!

Anyway, my head is pounding and its gettin late so Im off to bed. Thanks again yall! The support and love from here is truly overwhelming!


Tawsha and TJ

Tawsha,

I know it's two days later, but I wanted you to know I was still thinking about you and hoping that you were feeling supported enough to go on.

I know the difficulty of parenting - my boys were 5 and 2 when I first became ill, and I literally could only get our of bed or my chair for a total of 15 minutes a day for 6 months. It was horrible and I felt so guilty and overwhelmed.

But, we find strength somewhere to do all this. I'm astounded sometimes when I read this forum and am reminded that we're all living lives that seem impossible when you REALLY know what's going on. Those folks seeing us from the outside have no idea what kind of fortitude it takes to keep going during the hard times.

You're doing great. I hope that today is better than two days ago. But even if it isn't, I hope you're finding strength to cope.

I'm not a traditionally religious person, and I've only really started exploring spirituality in the past four years ago, but for some reason I thought of this great quote from St. Augustine that I repeat to myself over and over on days when I'm trying to find inner resources.

He said, "Do what you can, and then pray that God will give you the strength to do what you cannot". i just like the idea that we can do what we can't, if you know what I mean.

I send you all my best wishes.

Lynne

Tawsha- I hope you're out of pain by now- or at least feeling better!

Valerie

Lynne,
Aw ty for your kind words! Its been an insanely busy week, busier than normal. I am still having migraine pain all day. Some days are better than others, overall its tollerable, just very taxing having non stop pain. Im just greatful that its not so bad I cant move or get out of bed like it was from Thanksgiving to Christmas!

I love the saying you put up! It is quite true, and it gets me through the days all the time!

I have learned to try not to feel guilty, and forget worrying about the house chores etc when I am not well! Ya gotta just let some things go and be ok with it! again, my boys are old enough to help out quite a bit now. Its MUCH easier now that they are older than when they were little!

Probably my biggest worry, sometimes when I get these daily migraines, or prolonged migraines, I end up with a Hemiplegic one. I have felt a few times in the last 2 weeks like I was going to "sink" into one of those. Having some left side weakness, and more and more spacieness. More often though, these prolonged migraines START with a hemiplegic migraine, so Im keepin my fingers crossed!

Val,
Thanks hun! Not much of a change, still going on. I am hangin in there though. Thanks for the hugs, and back atcha

Tawsha