Struggling

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Struggling

Post  girlnamedgoo2 on Wed Aug 27, 2014 3:20 pm

I am new to this community. I am having a hard time lately with my migraines and just needed a place to vent where people understand. I have had migraines since I was about 11 or 12 years old. I have tried everything preventatively, nothing helps. I have on average 10 headache days a month, but lately it has been more like 15. Normally, I just feel resigned to the fact that it is something I have to deal with. My mother and maternal grandmother had the same problem until menopause. I try to remain hopeful but every time I try something different and it doesn't work...well it gets hard.

Today was just really bad because I received a doctor bill for over $1100. I ended up in the ER a couple months ago with an unmanageable migraine. I was vomiting, nothing was helping, even my "rescue" med Vicodin. My ER copay is $500 (terrible insurance) so when I received the hospital bill for about $650 it was about what I was expecting. Turns out, the docs there are not employed by the hospital and I had a separate bill from them. Most of the time I deal with the migraines, but right now I am just having a bit of a pity party. It's just not fair! I have a lot of (positive) changes going on in my life right now, however they are still changes and my body likes to respond with a migraine. I just wish I could enjoy the changes like anybody else. I just completed my bachelor's degree, started a new job, am in a great relationship, and am trying to save money for a house. That money in savings was supposed to go towards expenses for the house and now nearly $1800 will go to medical bills.

I just feel like "what is wrong with me?" Am I just a big baby and can't handle pain? Why didn't I just deal with the migraine, it is just pain. I get comments all the time about "you always have a headache!" or "your purse looks like you are a drug dealer" etc. I know they are made in ignorance and I logically know it is not "just a headache" but never the less it gets wearing. Today, I just feel like I am weak or something. I feel guilty a lot because I cannot do things because I have a migraine. The worst part is I spent hours on the phone with the insurancecompany, doctor's group, and the hospital, crying which of course is giving me a migraine. As I said, the migraines have been getting worse lately and I really should go to my migraine doctor. I also need to refill my prescription. Now I am afraid to because of the cost of all that. I know there are worse things that could happen to me but right now I just want to feel sorry for myself.

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Re: Struggling

Post  micheletroyer on Wed Aug 27, 2014 4:04 pm

Hi, and welcome to this community!

Lots of us here can relate to what you are feeling.  I've just had my second round of Botox about 6 weeks ago, and nothing has really changed.  You are not a "baby who can't handle pain", or a hypochondriac or a drug dealer/addict, or anything else that you have been labeled by people who just don't get it.  It's easy to fall into depression with a chronic pain condition like migrane -- I take 2 antidepressants and an anti-psychotic just to get by.

Hang in there, and keep coming back here.  Sometimes it takes awhile to get a response because we are all dealing with pain.  I have found this community to be a Godsend.  I hope you find help here too.
Michele
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Re: Struggling

Post  Kem10 on Wed Aug 27, 2014 4:27 pm

Completely agree with all Michele said. We are here to listen and support you and sometimes someone will think of something that helps one of us at least to some extent. In any case do know we care about you and you are not alone.
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Re: Struggling

Post  girlnamedgoo2 on Wed Aug 27, 2014 6:56 pm

Thank you so much for your kind replies. It really does help. Today has been really hard. I can talk to my mom about this stuff because she understands but sometimes it helps to write it down, kind of like journaling I guess. Plus, she told me today how sometimes she feels so guilty because I have them because of her. I don't want to burden her with this any more than I have to. I go through phases of being okay with it and times like now where I feel so frustrated. I get so used to the migraines constantly so I can kind of minimize the problem. Then things like this happen and I realise how much the migraines affect my life. Sometimes I'll have like 5 days migraine free and think it is just the best thing. Then I tell someone and they are just appalled and I realise how bad my migraines really are. After nearly 20 years of chronic migraines it would just be nice to know what it is like to be pain-free.

Thanks for the support and I wish everyone a headache-free night. Smile

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Re: Struggling

Post  Seaine on Thu Aug 28, 2014 4:24 pm

Your post made me cry because it's exactly what we all feel as well, and have experiences for years or decades. I know you said you've tried "everything" but keep looking. I had migraines for 15 years before I discovered that artificial food coloring was causing about 90% of my pain and suffering - now I still get my migraines but they are manageable and my triptan rescue med works great.
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Re: Struggling

Post  girlnamedgoo2 on Fri Aug 29, 2014 3:50 pm

Hi there! Thank you for your reply, it helps to know there are others who have these same thoughts. I am glad you found something that works! I will have to look into that too. Usually after a particularly bad migraine I will decide I am going to find the thing that works. The latest is PreventaMigraine, a supplement. I have tried every ingredient before except one but never all together. Sigh. We'll see. I try not to get my hopes up too much because it is hard to be disappointed so much. I have tried so many things over the years. Antidepressants, anti-seizure, blood pressure meds, supplements, yoga, biofeedback, glasses, it goes on and on. I can only hope that maybe the next thing will be it.

I had another insensitive comment today that just really bothered me. My friend said I "have more medical problems than anyone our age" I also have endometriosis. It is a very very mild case. I elected to do a laparoscopic surgery a couple years ago to definitively diagnose and treat it. We pretty much knew I did based on symptoms and a strong family history (thanks again, mom) but I wanted to know for sure just to prove to myself I wasn't imaging things. Plus, the doc was able to burn off what was there. I take birth control to keep it in check. Big deal. What twenty-something woman doesn't? I feel like so what? I am proactive with my health and like to take care of it now, when it is a small problem than end up like my mom with a hysterectomy because my reproductive organs are covered in it. I know my body and listen to it. I have to see a doc for the migraines and take meds to function! I hate it, I hate taking pills and would avoid it if I could! In fact, I do all the time. I avoid taking meds for a developing migraine and end up with a worse one! Do people think I like this?? I know people say stuff like that in ignorance or sometimes even because they think it is funny but it really hurts. Does anyone have a good response to that kind of stuff?

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Re: Struggling

Post  ConcordGrape on Fri Aug 29, 2014 6:50 pm

Haha, I have to reply with a laugh to the rude comment about having more medical problems than anyone our age. You are definitely not alone. Here is something humbling (that only we and others who are ill will understand): there are more sick people out there. There are people with cancer, and terminal illness. I had a friend in high school with Crohn's disease. A kid on the block in my neighborhood was in a car accident and is now paralyzed. The person who made this comment is ignorant, so please don't let it bother you.

I also felt the way you do, before I found this forum. I am now 24, I had to drop out of grad school, I lost my job, and I live with my parents, because of migraine. My dad tells me nearly ever day, "When I was your age I was SO healthy! I can't believe you have so many problems!" It used to bother me, but then I understood that my dad just couldn't comprehend my situation, so I expected his, and others' responses. Usually I just say something like, "Well Dad, you didn't have Migraine, and X, and X, and X."

In addition to chronic migraine, I also have poorly-controlled asthma, and use two inhalers. I have a tremor, that I can only control with diet, and I used to have IBS (prior to diet adjustments). I also have chronic shoulder/neck pain, that makes even the simplest tasks, like riding a bicycle or carrying groceries, excruciating. When I went on my first preventative, 5 years ago, I couldn't believe I would have to take medicine every day. After I got over the shock of "being different", I realized I wasn't so different, and began to see all the pain around me. An enormous number of people go through life in pain--joint pain, muscle pain, headache pain, or more--that is not addressed. So that's even more kudos to you for being brave enough to put yourself out there as someone who suffers and is making the best with what you have. A lot of people spend their lives building a "perfect" life, when really they are physically and emotionally a wreck and desperate for a change.

Some days I get depressed thinking about how I am not like a normal 24 year old. My friends go to clubs, drink, do stupid things, and then laugh about all their inside jokes the next day. But when you spend so much time suffering, struggling to do simple things, like walk around your house, you realize what is important in life, and you also appreciate the small things. It doesn't mean you can't dream big, but please don't dismiss all the little accomplishments you make every day. And don't let the stupid people bring you down. Also, a lot of my friends have stepped up and shown support in amazing ways.

I don't know if it has been mentioned here, but The Spoon Theory really helped me share what living with migraine is like to others who don't suffer. And if anyone ever asks, "What's it like to have a migraine?", tell them, "Imagine your worst hangover ever. It's like that, but more crippling."
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Re: Struggling

Post  Seaine on Sat Aug 30, 2014 4:36 am

Agreed, many people our age have health problems. My friend is the same age as me (28) and a few years ago she suddenly developed some sort of terrible immune system disorder. She began to have anaphylactic allergic reactions to most types of vegetables!! Doctors don't really know what she has but basically the result is that she lives on an extremely restricted diet, became quite thin and she now has some sort of hormonal problem which results in a painful skin condition. Honestly she probably suffers more than I do now that I don't eat food coloring.

I have mild EDS, a very common condition where your ligaments are hyperflexible. Some of my joints subluxate (become slightly dislocated) 10 times per day! It causes me some pain, which has decreased signficantly since I stopped eating food coloring. I also used to have IBS before, which also turns out was caused by food coloring. I guess the only thing that food coloring did not make worse was my ovarian cysts which I get. I also take birth control, like you, to prevent the majority of ovarian cysts.

Just a note, many people here have found that birth control worsened their migraines. I did not find this to be the case, but anyways people like you and I must take it. However, there is a kind called the mini pill which has only progesterone and no estrogen. I switched to this one and found that it had far fewer side effects - side effects which I didn't even realize I was having until I switched. The synthetic estrogen is what causes some migraines so if you try switching there's a possibility that it will help. Also, the brand name does NOT have any food coloring in it, which many many kinds of pills DO so don't forget that. Lastly, it does indeed prevent pregnancy just like the regular pill so long as you take it the same time everyday.
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Re: Struggling

Post  girlnamedgoo2 on Sat Aug 30, 2014 7:35 pm

Yes, I am aware of the birth control thing. Thanks so much for mentioning it though. My migraine doc was worried about it when I started. I have not noticed a difference before- I have been on several brands over the years. Come to think of it, I just switched 2-3 months ago, I wonder if the new one is contributing? It is so hard to figure out my "triggers", it is not very consistent. I will mention it though.

Honestly, I think it is rebound headaches lately. I've been using my various abortive meds way too much, but I just have no other choice. I really need to talk to the doc about it but I am scared. I had a bad experience with rebound as a young girl. I was still young enough to see a pediatrician. They would not believe I had migraines due to my age and would not prescribe anything. As a result, I ended up taking 4 ibuprofen at a time, twice a day, nearly every day just to get by. It a wonder I didn't end up with an ulcer or destroying my liver. She figured out what was going on and said they were rebound and told me to stop meds cold turkey for a week. It. Was. Awful. Never again. I don't think my migraine doc would do that to me, but it is still scary. I sound like a drug addict, but my worst fear is to be without meds.

I had to resort to the Vicodin again last night. Definitely calling the office after the holiday. I never use it this much, the majority of the bottle ends up expiring most of the time I take it so infrequently.

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Re: Struggling

Post  Seaine on Mon Sep 01, 2014 3:16 pm

Honestly I think the rebound thing is over-hyped and over-believed by some docs.  They don't know what causes our chronic migraines so they have a tendency to tell us that over-use of the meds must be doing it.  This is often NOT TRUE.  I know they are trying to help but it's just not always the case.

I get daily migraines.  I take 1/4 of an Imitrex pill (25mg) every single day of my life, with a few exceptions.  This is such a low dose that supposedly it wouldn't even help a migraine, let alone cause rebound.  I used to also take one, just ONE Ibuprofen with it.  I stopped that and found that the Imitrex works on its own, now that I don't eat food coloring.  So basically there is an unknown cause for my daily migraines, not the meds themselves since I take so little.
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Re: Struggling

Post  micheletroyer on Mon Sep 01, 2014 4:54 pm

Seaine, I completely agree that rebound headache is over-hyped.  It DOES happen, but not from using medications as prescribed or according to package directions.  I live on Ibuprofen every 6 hours, and my neuro would like to see me decrease that, but that would mean a lot of pain for me that goes away with the Ibuprofen.  I also take magnesium, diphenhydramine, Reglan and/or promethazine on a regular basis (these are all approved by my neuro as being non-rebounding).

There definitely needs to be more research done into the concept of rebound headache and routine medication usage, more specifically, into not denying a patient pain relief because they might rebound.
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Re: Struggling

Post  lorente on Mon Sep 01, 2014 10:40 pm

As for rebounds, I'm not convinced the meds cause more migs; I think they just don't abort the mig the way they're supposed to in the first place, and--surprise, surprise--when the med wears off, the mig is still there.

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Re: Struggling

Post  girlnamedgoo2 on Wed Sep 03, 2014 2:03 pm

To be quite honest, I've never questioned the rebound thing. I guess I just take the doc at their word, "they should know best, they're the doctor" and all that nonsense. I should know better, I am a nurse, doctors do not know everything, just like anybody else. I can see it going either way. Your body builds a tolerance to a certain med and as a result the patient needs more meds more frequently to treat the migraine vs. chronic daily migraines uncontrolled by said med and labeled "rebound". As Michelle said, I'd like to see research on that. I read a lot of research articles, on migraine especially, and have never seen one. Either way, it sucks to be said patient. I'm thinking I'll give this new supplement some time before I talk with the migraine doc, stalling again. I haven't noticed a difference so far but fingers crossed.

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Re: Struggling

Post  Migrainegirl on Sat Sep 06, 2014 9:26 am

You might want to try bio- identical hormones rather than the artificial ones in birth control pills. They made a big difference for me.
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Re: Struggling

Post  girlnamedgoo2 on Thu Jan 15, 2015 6:55 pm

Update: Went to the migraine doc back in October and started on zonegran (anti-seizure) for prevention. Titrated up to 75mg. I felt like the migraines I was having were less severe and easier to abort, even though the frequency never got less. Went in for follow up today. I have been having mood swings lately, frankly been a bit of a grouch, though it comes and goes. I was willing to deal with it though in order to see an improvement in the migraines. Also, when I started on it she told me to be sure I drink enough water due to a risk for kidney stones. I am a nurse and unfortunately do not get enough to drink at work or bathroom breaks either. Have been getting that sensation of a UTI coming on lately too. After much discussion we both agreed (albeit myself somewhat reluctantly) it wasn't the best med for me. I was so disappointed bc this is the first time I have noticed a difference in the migraines with a preventative. I am going to start Prozac instead. Sigh.

Then she tells me that there have been a lot of changes recently what with Obamacare and that Vicodin (my rescue med) and others are now more controlled. This includes my Fioricet, the med I use for a bad migraine. I have other abortives I try to use first that do not work as well, but often they escalate so fast or I put off taking meds for so long I have to resort to Fioricet. My worst fear is to be without meds. She tells me also that soon they (the clinic) will not be able to dispense these meds AT ALL. This is due to a big push do steer away from these types of meds for migraine due to the risk of rebound & dependence. She has written me a Rx for a muscle relaxer that I can take with diclofenac but I don't know how that will work... Plus I can only use them every EIGHT hours. What if the first dose doesn't work? Eight hours is a long time with a raging migraine... I came home and counted it up, I have ~ 16 doses of Fioricet left, more if I stretch it. The Vicodin, I have not refilled since 01/2013!! Come on! I only use that as an absolute last resort, they are expired for crying out loud! I am so scared. I CANNOT function with a migraine. These meds are how I manage to have a normal existence. I hate saying it like that, but it is true.

Then, to top it all off, I go to fill the metaxalone (muscle relaxer) and it is $135! Yeah, right. Ugh. All of this is giving me a headache.

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Re: Struggling

Post  tortoisegirl on Thu Jan 15, 2015 7:27 pm

Thats pretty ridiculous on the muscle relaxer cost. There should be some lower cost options. I take Zanaflex/Tizanadine for example, each night at bedtime. It would be a good choice if you wanted something to knock your out (it can be very sedating). With most of the others, they are a bit weaker, but can often be tolerated during the day. As for the pain meds, I am definitely seeing that too, even at the pain management clinic I go to. That could be a choice if you need that once a year Vicodin script or whatever.

If your headache clinic says they can no longer do that, that would have to mean their providers don't have Schedule II DEA numbers to write controlled substance scripts (which would be unusual but not unheard of). It is NOT an Obamacare thing. They are just re-classifying Hydrocodone products as Schedule II, assuming that is what they are talking about. Fioricet will not be going Schedule II like Vicodin will. Some clinics however will often tell flat out lies about opiates, instead of just saying they don't want to prescribe them as it increases their liability. Can you get a new script for each now so you can at least start with a full bottle until you have to find another option? I take it Triptans don't help?

You should definitely take a medication at the first sign of a migraine, as it often takes less medication and gets under control / doesn't get as severe that way. I am guilty too however, as often I can't tell the difference between a bad exacerbation of my constant headache and a migraine, until its too late. I know what you mean about needing the meds...if it wasn't for daily pain meds I wouldn't be able to work. Hang in there! Best wishes.

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Re: Struggling

Post  girlnamedgoo2 on Sat Jan 17, 2015 10:11 am

I ended up sending her a message (they have a way to contact your doc online to ask questions etc) and letting her know about the cost. I looked up other muscle relaxers that will cost me <$20 and gave her the names of those. I have calmed down a bit and decided I have quite a few doses left of fioricet. I will just try the muscle relaxer thing and see how it works. If it doesn't I can just take fioricet. I will just have to explain to her I need fioricet or something similar. I am only on it now bc I used to take midrin but they stopped making it a few years ago. I have done some poking around and it looks like the are manufacturing it again (listed under the component ingredients) so maybe I can get back on that? It would be more appropriate for treating migraines than the fioricet anyway.

I really do not want to do triptans again. I was on them for years, I tried just about every one out there. I always had those side effects (pressure on my chest, tightness in my jaw, racing heart, anxiety) but tolerated it bc it dealt with the migraine. The last one I was on was zomig. The last time I took it I had a panic attack or something. I really thought I was dying, I was crying and telling my family I couldn't breathe. I told the doc no more, if there are other options. That's why I'm so worried about the fioricet thing, my options are kind of limited. Although I'd rather deal with the triptans side effects than have nothing. I don't know why but I am just really convinced this muscle relaxer will not help at all.

So the person I see at the clinic is a nurse practitioner. I have been seeing her for 6-7 years bc it got to be so hard to schedule an appointment with my old doc there- he only sees patients like 2 days a week and spends more time doing research studies. So she does not have a DEA number or whatever. I talked to the receptionist yesterday and she said the doctor will sign it next week and I can come pick it up etc.

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Re: Struggling

Post  tortoisegirl on Sat Jan 17, 2015 11:34 am

Yes you are right the muscle relaxer is unlikely to work well for migraine, especially on its own (they are often good as part of a cocktail, like you said along with Diclofenac, or if taking one which is sedating, using it to nap until the migraine subsides). Its always worth a try though. Also, the more things you try, the easier it is for the doctor to substantiate to the powers at be that you need to be on what works well.

Going back on Midrin could be another good plan, even in addition to the Fioricet. Midrin really isn't any more appropriate than Fiorinal though to reduce rebound risk, as both have an analgesic. They do however have different analgesics, so if you had more than a few migraines in the same week, alternating the medications could be a good idea. Midrin has Isometheptene Mucate (vasoconstrictor), Dichloralphenazone (sedative / central nervous system depressant), and Acetaminophen (analgesic). Fiorinal has Butalbital (barbiturate / central nervous system depressant), Aspirin (analgesic), and Caffeine (vasoconstrictor).

If you do end up having to re-try Triptans, you may want to try a fraction of the dose. Side effects like you describe are often dose-related, and folks are sometimes surprised that they can take 1/2 or 1/4 of the dose with almost the same effects. They make lower dose pills, or they can be cut. I too get those side effects with some Triptans, although have found some where they are significantly lessened.

So you are getting a Vicodin prescription next week, or Fioricet? A DEA number isn't needed for Fioricet, only Vicodin, so that wouldn't make sense. Another option as an alternative to Vicodin would be Fioricet with Codeine, which should still not need a DEA number as it isn't Schedule II, or Ultram. You wouldn't want to specifically ask for a medication, but you could ask what else could be used as a rescue migraine med that they would be able to prescribe.

So have you started on the Prozac for prevention now? That is an interesting choice...its not as well known as a migraine preventative, although is something that could be helpful. What other types of preventatives have you tried? The typical ones like Topamax, Gapapentin, Depakote, Amitriptyline or Nortriptyline, Cymbalta, Inderal, Verapamil, etc? Best wishes.

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Re: Struggling

Post  girlnamedgoo2 on Sat Jan 17, 2015 1:16 pm

I guess I just feel like the midrin was more appropriate bc it has the vasoconstrictor. I know caffeine has that effect too. Also, I always felt less sedated from the midrin vs the fioricet. I would much rather avoid triptans just bc I had such bad effects from them for so long, esp that last last time I took the zomig, I really thought something was wrong. If I do have to go that route though, I'll try splitting the pills. I can't remember which ones worked best. I remember I tried maxalt, frova, axert, and of course zomig. Interestingly, never imitrex.

I am supposed to pick of a paper Rx for vicodin next week after one of the doctor's signs it. The fioricet I am fairly certain she dicontinued. I watched her X it off the computer on my list of meds. So I am pretty sure if I tried to refill it it will come back saying I am not perscribed that med. In the past, every refill required prior authorization. If the doc does not sign the vicodin I still have some but they are a year expired so not the best option. They will have to give me something for rescue bc I do use it 1-4 times a year. That is my "avoid an ER trip" med.

Yes, I started the prozac. Simultaneously weaning off the zonegran. She said another doc in the clinic has used it in his patients with success. I have tried many things over the years. Two tricyclic antidepressants -- imipramine and desipramine -- both of which I am allergic to, hives and BP through the roof. Gabapentin, that did nothing, did not help or hurt so I finally quit taking it. Topamax, did not help or hurt, made my eyeball twitch constantly though so they took me off that. Atenolol, did not help or hurt, my BP has always run low though and sure enough I got even lower so she took me off that. She told me the due to the BP thing she wants to avoid any other blood pressure meds. I refused amitripyline. My mom was on that for years and she said it did help a bit. However, her migraines virtually stopped with menopause so she didn't really need it anymore. When they tried to wean her off it took over 2 years. She had vivid, really disturbing dreams any time she stopped it. Now she takes ambien bc she cannot sleep normally. I'm not going to get my hopes up about the prozac, the zonegran was the first time I ever notcied even a small difference with a preventative, but here's hoping I'm wrong!

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Re: Struggling

Post  tortoisegirl on Sat Jan 17, 2015 5:41 pm

Weird they would prescribe Vicodin but not Fioricet. Hopefully they will let you go back to Midrin though. I looked that up today and may have to ask to try that, as oddly enough I never have. Good luck with the Prozac and keep us posted on the rest of it. Best wishes.

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Re: Struggling

Post  Heidi919 on Fri Jan 23, 2015 5:34 pm

I have been suffering from migraines for almost 3 years now. I was recently hospitalized for a week and average at least 5 a week.I cannot express to you how comforting it is to hear your stories which helps me feel not alone. I have hit such a low lately, overwhelmingly depressed and feel so bad I can't better take care of my family. If it wasn't for my famiky, my faith and my doctor not giving up on me, I don't know how I would survive. I've learned to take things hour by hour, day by day. Thank you everyone for sharing your stories. I hope we can be encouraging to each other.

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Re: Struggling

Post  tortoisegirl on Sat Jan 24, 2015 1:42 pm

Heidi: Welcome! I'm sorry you are suffering so much. Thank you for sharing. I hope you find something helpful soon. Best wishes.

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Re: Struggling

Post  stephenF on Mon Mar 02, 2015 4:46 pm

Really sorry for your Migraines. Pardon me for my desire to help, but I hope you know that these prescriptions are not going to "fix" your migraines. if you get lucky and they decrease the pain, great! You really want to focus on the the events that trigger your migraines. If it is food then get blood tests done focusing on your liver and thyroid function. if it is a movement or time of the day issue be assessed by a good chiropractor. Would love to chat and help.

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Re: Struggling

Post  girlnamedgoo2 on Fri Mar 06, 2015 1:30 pm

Heidi- I am sorry you are having such a hard time, I hope things improve for you soon. You're right it does help to know you are not alone and be able to talk to people who understand what you are going through and are not judgemental or pittying. I am glad you have such a good support system. I hope you find relief soon!

Stephen- thank you for the concern. Believe me, I understand that these abortive meds will not "fix" my migraine, they treat the symptoms, not the cause. I am an RN, trust me I know how it works. But, as I said I have tried many preventatives over the years. I have also made lifestyle changes, yoga, biofeedback, etc. None of it makes the migraines worse but it also does not help. My mother, her mother, and several of my aunts and cousins have migraines. I will likely always have migraines. I have gotten to point in my life where I have had more years with chronic migraines than without. It is emotionally draining to get excited that maybe this next thing will work and then it doesn't. That does not mean I am gving up, I try new things all the time. But if my choices are suffer and take no meds and have no social or professional life because I cannot function or take meds- I choose the meds. My goal is also to prevent them in the first place but realistically for me I will always have some migraines and that means abortives. I have seen several specialists over the years. My PCP, gynecologist, eye doctor, and dentist (I have TMJ dysfunction so may be contributing) have all weighed in. Trust me, I have not been suffering from migrianes the majority of my life without having blood tests. Some people just have migraines. Yes, I track my triggers and keep a diary but my triggers are not very clear-cut. Sometimes they trigger a migraine, sometimes not, sometimes I have a migraine with no trigger.

In other news- I might be participating in a research study in the coming months. It is a one-time anti-body injection that targets that CGRP protein. I had read a bit about it prior to them calling me and it sounds intriguing. Haven't decided yet if I will do it, but I am leaning towards yes if I end up qualifying.

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Re: Struggling

Post  dcook60 on Fri Mar 06, 2015 6:39 pm

wow, that was a great post, girl!  you wrote eloquently about your history, which sounded pretty much exactly like my own.  it's unconscionable that people assume we "just haven't tried their magic thing, the key to total health".  i have to go to work with a migraine EVERY DAY; and wouldn't have a life at all, were it not for the 2 tripans which work for me.  

i, too, have had migraines more than half my life.  46 years, and i'm 75 now.  started at age 29 from what could have been (but nobody really knows.....) lyme disease.

it's exciting to hear about the CGRP study.  after reading about it in the past few years, finally it might turn into something good!  

someone else posted about the expense of the drugs we need.  right now i'm in prescription hell because of complicated factors in my insurance, and applications for free drugs from the merck co. (they make maxalt).  i have two doctors involved, fighting for me and jumping through their hoops.

but mostly it's ME doing all the phone calls and paperwork.  it is very draining.  and when it's over, i may still not have the certain drugs i need, which are brand-names.  no generic has ever worked for me, and there's the rub. nobody wants to pay the outrageous prices for these brand-names.

i've been quoted $40-80 PER PILL, if i have to buy some myself.  for years, i have been fortunate enough to beg samples from my doctors, and now they have no more samples because of the generics on the market.

my primary doc and my neuro both understand that i need 48 pills per month.  you see where this is going?  my income is skinny.  i ordered some amerge (triptan) from canada; it took 3 weeks to get here, was still $7 per pill, and was supposedly the brand.  made in turkey. they were not the same as american-made amerge, for sure.

i have a whole box of those if anyone wants to try 'em!  pm me.  i did talk to the glaxo-smith kline company and told them of the lack of effectiveness in my case.  i've become so cynical that i doubt anything will come of it.  what kind of quality control can they have in turkey, i ask?

enough rambling, wishing everyone a less painful weekend.  dianne
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