Anyone else like me out there?

I have chronic migraines, for me this means 24/7 with no days off for good behavior (at least not since it's started in February). I just found this site. I am hoping that maybe I have found a place where I've found others that know what I am going through, other people that are like me. I got my first migraines when I was in high school. College and my twenty's were great with only a few. Now I am thirty-one, I have a migraine every day. I'm on medical leave from work, and if I can't go back to work by Nov. then I am probably going to lose my job and I don't know what I will do if/when that happens.

I see a neurologist who specialists in migraines and I take several medications. I've had a CT scan and an MRI plus blood work. I eat a very clean diet to avoid known triggers, but it doesn't make a difference. I still get the migraines. I am sensitive to light, sound, even smells will get to me and make me nauseous. I see a psychologist who is helping me with the adjustments to my life and helping me accept the changes, we all know that I am depressed to but no meds. for it because of the headache that is a side effect. Ahh, the joys of modern medicine. I feel that it is a medicine roulette wheel. A guessing game if you will, what do we try next and will it work? No one seems to know and they're the doctors. Sorry, I believe they are doing they're best, but I am scared and frustrated too.

How do you keep the faith and the hope, when you're scared that the darkness and pain are all that are left? You don't know me and I'm sorry to burden you so, but maybe you can understand where I am coming from? Tell me I'm not alone, please?

Lavenderfire

There are quite a few of us who have near constant migraines here. You've come to the right place, but I wish you didn't NEED to join our merry band. I've been told by several doctors, both GP, and neuros that depression is co-morbid with migraine. It makes sense that if you feel that crappy so much of the time you'd get depressed. Have you tried different medications for depression? I had to try a few before I found something that worked for me. Some are even prescribed as preventive to migraines.

My neurologist does not want to give me any medication for the depression. He is worried that the side effect headache will get to intermingled with my migraines and it will just make everything worse. So for now no antidepressants for me. Which with everything else I am on I am actually glad about. I already feel like a walking pharmacy.

Thank you for responding so quickly. It's nice to not feel so alone all the time.

Lavenderfire

Hi and welcome. Unfortunately too many of us know how you feel. Have you tried any of the herbal supplements? (butterbur, magnesium, ...). I've done much, much better with these than any of the prescription meds did.

I take magnesium, and melatonin along with my prescriptions. Without everything I am a black hole for the pain. With everything the pain is a range between a 4-6 most days.

Sorry, I am having a rough day today I am not always so gloomy.

My mother mentioned feverfew to me just today has anyone heard anything about it? good or bad? I am very open to ideas. Butterbur is new to me, I will have to look into that one. Thank you, Migrainegirl.

oh, how we all wish you didn't have to be here with us hardcore migraineurs! but this site is surely a lifesaver for those of us with more than your garden-variety head pain. i'm glad to see you only used the bad word "headache", in reference to side effects from drugs. it's not an ACHE we have, it's serious pain.

there are those who classify what we have as a neurological disease. or disorder, take your pick. the unfortunate thing is that so little is known about migraine, even though it is estimated that about 10% of the world's people have them, at least occasionally.

many of us here have been through all the neuros, alternative practitioners, drugs, supplements, ad nauseum. some have found help there. it helps to have a persevering attitude, and know that somewhere, somehow, an answer will be forthcoming for you. not a cure, but a way to get through your life more successfully, and with less pain.

i'm one of those daily people, and i take a boatload of triptan drugs. if you haven't experimented with all seven of those, please try to do that. unless you have certain physical contraindications, they can be miracle drugs. (imitrex was the first one, in the early 1990's, and there are 6 others now).

you are so right; it is indeed a guessing game. no wonder it's called the PRACTICE of medicine; we are getting practiced on, in our desperation to be rid of the pain.

this forum's members understand better than any doctors what it is like to be cursed with this disease. we surely "get it". so ask all the q's you want, and people really do want to help.

my history: 43 years of migraines, but daily only for the past 12 years or so. yet i work 30 hours/week at age 72, and that wouldn't be possible without my almost-daily triptans. i'm surely not saying they are the only answer, but they are part of the answer for me, where all preventives and other so-called natural substances have been dismal failures.

you are welcome to PM any of us, if you like, for more detailed info. my many diagnoses include MCS (multiple chemical sensitivity) and knowing more about this issue may help you also. i must have a pretty pure environment and diet, which sounds impossible but it IS possible to make changes that may help dramatically. dianne

Dianne,

I played the triptan game earlier in my treatment plan and all I got for my time was a fuzzy head, some tripped out dreams, and an emotional roller coaster. And when you teach middle school special education that does not make for a good mix. It was actually a relief when they finally decided to to put me on medical leave. I was a mess and I was really no fit to be a teacher any more.

I tried several triptans I can't even remember all of them now. To name a few: Imatrex, Frova, Maxalt, Axert, Amerge. I also took Lorazapam for anxiety, tried pregnisone, painkillers (OTCs and prescriptions). Triptans seem to be everyone's life saver that I've been able to talk to, and they don't work for me. Do you know people that they don't work for? What options work for them?

With the depression meds, like I said I haven't even tried to take any yet. I so don't want to take another pill. I mean really. I feel like my insides are going to be preserved with all the ones I am already taking. It can't be good for me long term, but what other choice do I have? I can't function as a human being without them. I am barely human enough as it is. It doesn't help that my stress level sky rocketed today after having to tell my district that my medical leave has been extended by three months.

Please tell me how you have made it 12 years? I'm single and I feel like a sinking ship.

Many of us are like you, me included. I have had a migraine daily for about 18 years now. I have consistently used painkillers for about 25, along with Phenergan for nausea and vomiting. My liver is still hanging in there.

I've also tried over 23 prescription preventatives and all the supplements but nothing helps. I'm 55 and I do have to say I vomit less and they are just a little less severe than in my 30s. My daughter just hit 30 and hers are ramping up each year. But Topamax helps her even though she has to deal with the side effects.

I'm also diabetic and every time I go to my endocrinologist my doc asks if I'm depressed and my answer is, "Of course I am, who wouldn't be in this kind of situation?" I tried 3 antidepressants, but as migraine prevention, and they made the migs worse.

How do you deal with the depression? I don't know. We live with it. Don't be too hard on yourself is the best advice I can give you. If the dishes aren't done or you forget someone's birthday, forgive yourself and know that you are doing the best you can. Be good to yourself every chance you get. I have no illusions at this point that it will get better but I keep trying. I just started myofascial release and am waiting to see if it will help longterm. So try whatever you can.

Good luck, hang in there, and keep coming back. Go back through the older posts and you'll see many people as bad as you and even worse. It helps to know you're not alone. ----Cathy

Lavenderfire,

Oh dear. Your story sounds so very very familiar. I am 35 years old and have been having occasional migraines since childhood. They did not truly start to interfere with my life until about 2006 though. Things have become progressively worse on and off since then. I too have been on the medication roller coaster and I agree - it is not fun at all. I'm pretty much a daily migrainer now and have had bouts of depression, especially recently. Fortunately, my husband is an angel and he has really been there for me through all of this.

I have also had to go on disability. I used to work as a speech-language pathologist and was off work for 2.5 years. I tried to go back to work again in January ( I was getting about 12-14 migraines a month at that time). However, work just made everything worse and even though I kept decreasing my hours I just couldn't hack it. Eventually, I was laid off because of the migraines but now I'm having to fight the insurance company to get my disability reinstated. This, despite the fact that my doctor has declared me to be completely disabled and unable to work at any job.

Along with a physio, chiro, massage therapist, neurologist, family doctor, and visceral manipulation therapist, I am also seeing a psychologist. Since anxiety is a huge migraine trigger for me, the psychologist has been really helpful. However, I've still got a lot to work on in that area.

I too have tried to avoid meds as much as possible so I have done a lot of reading and research on alternatives. One thing that works for me sometimes is tiger balm on various points on my head and neck (back of neck at base of skull, on the bony area behind the ears, on the temples, and across the forehead between the eyebrows just above the eyes). If I catch the migraine early enough sometimes the tiger balm allows me to avoid using triptans.

As for the depression, I don't know what to tell you. I just posted on here recently because I was feeling really awful and the responses I got from the kind people on this forum really helped. Meditation and prayer have also helped me in the bigger scheme of things though I find it really difficult to meditate or attend church when my head is bad.

Like others have said, the biggest thing is not to give up. As long as you keep trying to find ways to help yourself, this thing can't beat you. Having said that, if you're feeling down know that's it's perfectly normal and that it's okay to feel that way sometimes.

My thoughts are with you.

Wow,

Thank you to everyone for responding to me. I really appreciate it. It's nice to hear that there people who are welcoming me with open arms and really understand where I am coming from. On the other hand I wish there wasn't a need for us to gather around a camp fire together. You've all really helped me get through the past 24 hours. I needed the help. Thank-you is inadequate, but sincerely meant.

Today is a little bit easier emotionally, knowing others are there. That you all welcomed me has truly helped. If ever I can return the favor please let me know.



Lavenderfire

Hi and welcome!
Your story is strikingly similar to mine! I started getting migraines in high school, but only once or twice a month. In my twenties, they increased in frequency, gradually, but I managed them pretty well with triptans, mainly Maxalt. Then, once I turned 30, they became chronic, and I couldn't control them. Now, at 34, I have had to leave my job as a teacher and go on disability. I have tried almost every preventative I know of, herbal and medicinal from Butterbur to Topamax with no positive results. I am under the care of a good neurologist (finally!), a chiropractor, a psychiatrist (for my anxiety issues), and am hoping for the best...I am glad to have found this site and to be able to talk to others who know what I experiencing--it really does help! Right now, I am taking a beta-blocker, but I don't know if it has really helped or not, it's only been about a month since I have been on it, but I have noticed a slight decrease in intensity of the migraines overall. Good luck to you and let me know when you find something that works for you...!

Michelle

my chronic headaches and migraines caused me to go on disability. i so know your pain. and to top it all off, i just got diagnosed with depression. taking anti depression meds. very interesting that your doc does not want you to take anti meds. all seven docs that i have seen always wanted me to take anti depression meds, i was not even depressed, but now, i am on two and in terms of the depression, i am so much better. even my pain is a little bit better. hey i take a little bit better. RIGHT.

you can do all the right things, and your pain, as i call it my MONSTER, will still come for a visit and stay way, way, way, way to long. ggggggggggggggggggrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

as i say, hang in their.................

I take meds twice a day (morning and night) and have been for the past 6 months. I am now at the point where I seem to be sliding backwards. I don't know if I am really getting worse or if I am gaining a tolerance to the medications or what is happening. I know that I am already taking higher doses of the medications than my neurologists says that most of his patients take. I see him every two weeks, see a psychologist regularly, and am getting ready to start acupuncture. I did try massage, but the lady did deep tissue and said the I was so tense and was so rough with me that I was bruised for days afterward and made my migraines worse. I have not had the courage to try again.

Does anyone else seem to need to take large doses of the medications before they even see small changes in their migraines?

Lavenderfire

You are not alone We are all with you. We are all feeling migraine pain like you. But you are lucky that you are in western country. You can get medicines there easily. I hope God shall helps us to remove our migraine pain Shakil from Pakistan

Ok, so I've been back to the doctor a few times since my last post. My migraines have not gotten any better. In fact last week was awful. My left eye was droopy for a few hours on at least two occasions (new symptom). Here's what the update is. I've upped the dose on the norvasc to 15mg per day. I'm now on Zoloft 50mg per day (I told the neurologist the anxiety and depression where out of control and we had to do something) this was our agreement. And we are going to do a spinal tap on the 27th.

The spinal tap has me kind of freaked out. I know it's not that big of a deal, but I've had two spinal surgeries and anything to do with my spine causes anxiety. Has anyone had this done? Can anyone share with me a little bit about their experience to help make it a little less of a mystery to me? I know what it's going to be like from talking to the doctor, but from a personal experience is always different.

LavenderFire

lavender, nice to see you here again, but NOT nice re: the circumstances.

i have had 4 spinal taps. each time they were to check opening and closing pressure. a couple of the taps weren't done properly, as clowns seemed to be doing them

if that is among the reasons you are having this done, please be sure to ask questions. as for pain or anything scary, there was NONE. no bad effects any of the 4 times. absolutely no pain at all. the mechanics were done well, but the measuring was the problem!

the values for pressures were all over the place, which is common, as far as i've read since. they were "borderline" high, which is never a good place to be.

please don't be afraid; it's a piece of cake in my experience. dianne

treatment.
Im bevchev i'm new too this is my 2nd post I had migraine in high school
every monday morning
did some research on it. I'm giving you ideas that help me

There is no specific cure for migraine headaches.

The goal is to treat your migraine symptoms right away,
and to prevent symptoms by avoiding or changing your triggers.
A key step involves learning how to manage your migraines at home.
A headache diary can help you identify your headache triggers.
If you have frequent migraines, your doctor may prescribe medicine
to reduce the number of attacks.

You need to take the medicine every day for it to be effective.
Medications may include:
Antidepressants such as amitriptyline or venlafaxine

Blood pressure medicines such as beta blockers (propanolol)
or calcium channel blockers (verapamil)

Seizure medicines such as valproic acid, gabapentin, and topiramate

Botulinum toxin (Botox) injections may also help reduce migraine attacks.

ps. and if you believe in God please pray for healing.

hope this will help
God bless
BevChev.

The reason for the spinal tap is to look for any reason for causes (high/low pressure, possible infection) . My migraines are getting worse with no identifiable causes. I'm looking for anything that could be a possible cause. Between me and the doctors we're stumped. Diet hasn't turned up anything as a trigger, it can't be work related as I haven't been there since April. However, I keep adding common signs of migraines. One of the newest is one sided eye droopiness.

I really don't think the spinal tap will give us any answers, but it's more to rule out possibilities. Anything to do with my spine is anxiety causing for me because I've had two spinal surgeries, so I have some PTSD issues surrounding my spine. Logic versus emotion. I have to wait until the 27th to get the spinal tap.

Lately the pain from the migraines is so bad I just have to lay in bed with a towel over my eyes and wait for the worst of it to be over. There's nothing else I can do. If I move or breath to deep I'm scared the nausea will take hold and I'll have to move and then I start seeing stars.

Need to go lay down now. Thanks for everything,

Lavender

you are very welcome. we wish you only the best.

yes, the spinal tap will be good for ruling out things. i hope by the time you have it you will be feeling lots better. dianne

Hi I am a 61 yr old woman in pretty good health except for daily migraines. I have had migraines for 20 yrs but lately I have one every day..I take so much Imitrex I know I am damaging my health. My neuro has tried the preventitive meds like Topamax, Elavil etc but my stomach cannot tolerate them and I throw up non stop for days when I try the meds. I don;t know what to do any more. I sympathize with you, migraines are just the most awful things on earth. Have you tried acupunture? I do that and seems like the headaches aren't quite as severe when I go (meaning I dont have to go to the ER monthly)... Also I tried Botox shots in the head and that helped a lot for a while but the last couple of times it doesn;t work any more. Its so depressing but hang in there, just keep trying different things...maybe one of them will work

dear "wild", welcome to you. we feel YOUR pain, too, because most of us have tried nearly everything out there, and that's why we are still HERE.

some, of course, have found a drug or supplement combo which lets them have a life. i fit into that category. were it not for imitrex and the other 6 drugs in that class, i could not have struggled on. the maxalt and amerge, (the two which work for me now, after trying all the others) do not take all pain away, but put it in the background. i'm 72, still working part-time, and have had the monster pain for 43 years.

please don't worry so much about damaging your health with lots of imitrex; i have a good article by a respected doctor, with studies to prove they are very safe for most people, if you want to PM me.

(most doctors seem to have read one scary study, and have their minds made up that triptans are to be used only twice/week. they refuse to keep up with the latest thinking, because that would require them to be open-minded. ha!)

personally, i've taken them daily for about 12 years, and my heart has been checked out with no problems. the rest of me is good, too, all except the dratted head.......i'm pretty much done trying things, as all were busts for me.

see how i've broken up my post into a couple of sentences each? just hit enter twice at the end of each small paragraph. this makes it far easier for folks to read posts. best wishes, dianne

thanks for responding... and the reassurance... I wouldn't be able to function at all if it weren't for the Imitrex.
I thought they would go away as I got older but they are actually worse. HA
Sometimes I feel so depressed
then I am thankful for a great husband, my cats and my chickens
take care Jeannie

you have many things for which to be grateful! so do i. we all need to count our blessings every day, don't we?

we moved from smoggy southern california 32 years ago, to the gorgeous pacific northwest. i dread the winters the older i become, but am a pretty tough gal since i grew up in snowy/cold in the midwest.

keep on reading lots of posts here, and you will become more educated on migraines than most doctors. lol. dianne

one thing I have noticed with my migraines is they always start with sinus congestion, stuffed nose, facial pain, if I can take a decongestant and it works I can sometimes avoid the migraine. But often the sinus turns into a throbbing pain on my right side of my head. Then it gets worse and worse and nausea, etc. Also my trigger is pollution, weather. If the day is forecasted to be smoggy and hot I am on the floor. My husband is willing to move somewhere with "better" air but what if we move and I am no better? We have a darling little home and a huge yard where I have my hens (so cute)..and a big garden.
I am calling a Headache Neurology Clinic tomorrow, my neuro doesn;t seem to have any answers...anymore I have kinda lost faith in him. This place I researched is supposed to be "cutting edge" so we will see.
Its hard not to get discouraged.
I'd like to visit the Pacific Northwest sometime, I'd like to salmon fish in the Cascades

I sure hear you loud and clear. I just about have a migraine every day. I have tried preventitives and they all have such bad side effects for me I have to stop. Some caused me to throw up all day! My primary care doc seems to think I am depressed, damn right I am with these &*^^%#*#(# migraines! I'd be a happy gal if they would just go away.
Hang in there, keep trying stuff- I am going to call a Headache Clinic to see if they are any good.