Am I alone????

12/12/11 2:08pm

I need to clarify something. When I say I have run the gammit of treatment options I did not mean to imply that I was consitently changing physicians. I started with my PCP, whom I still see, then was seen by a Migraine specialist for over a year while at the same time seeing a Neuroligist and my next step was a pain management physician. I did have to change pain MDs just once as the first one and I did not fit. But have been followed my the second one for over 3 years now. I have never been to ER due to being a nurse, I know what is said of migraine patients. I do see Psych. due to the cloud of depression that has surrounded me. So with the exception of pain Mds, I am currently seeing the same MDs whom I started with. I am just looking for re-assurance that I am not alone or maybe I am some kind of anomaly. Please speak to me.

Cris1971

12/12/11 6:01pm

It has now been 18 months of constaint migraine. For me the pain is not the worst part, all the crazy neuro stuff really makes my life a trial. Vertigo,tinitius,parithisia, numbness, weekness, photophobia phonophobia ect.

i am so sorry you are struggling, this really is a tough life to have. I have been working really hard to focas on the positives in my life. Bottom line its hard. What a blessing to have a place to come where people get it and you can find so much support.

Sending healing thoughts your way.

1026laurie

12/13/11 12:07am

Thank you for your kind words. One of "extra" symptoms I am trying to find a way to live with now is short term memory loss. I do have vertigo occasional and have problems with depth perception, I hate to walk down stairs. After having to deal with 3 years of infertility, I try to approach my problems in that God has "chosen" me because I am a strong enough person to deal with it and there is a lesson he wants me to learn. I do not approach problems that I am being punished for something. I do find some comfort in useing that approach. While trying to get pregnant my Granny became gravely ill and I was able to be at the hospital daily and/or whenever needed. She did pass and I got pregnant the next month. I feel had I had a child/children I would not have been able to give that extra to my Granny. I'm hanging in there sometimes one hour at a time. Good Luck in your journey!

sacobb

12/13/11 11:03pm

have been to the er for my headaches but really don't want to go anymore. last time i was given morphine i.v. was bounceing off the walls. took something to bring me down and a long time to get rid of the funny feeling. would love to see a headache doctor but don't think one is around here.

ladyastro

12/12/11 4:38pm

I FEEL YOUR Pain, as well! I used to have 2 migraines a month from age 15 till I started going through peri-menopause at 46. They were hoprmonal migraines, and with the onset of perimenopause the hormone storms amped the number of migraines up to 6-10 a month. I have tried a lot of modalities to get relief from #10 pain, and nothing weorked except Imitrex..the barand only at 100mg. Sometimes 2 Imitres is necessary to get relief. However I rebounded on Imitres early on and now I have 15 migraines a month. I do stop the Imitrex when I have a few days free from work and have to endure this horrible pain for 24 hours. Then I am free from aheadache for maybe a week. When the next one comes, the situation starts all over again. I'm frustrated to the max. My neurologist has no suggestion, because nothing else works to abort the pain except Imitrex. I'm afraid that I'll have a heart attack from taking it so much. Any suggestions from others with this problem? This is the curse, I'd say, of my life!!!

califmom2

12/13/11 4:33pm

ladyastro, when it got to the point where I was taking too much Imitrex, then it stopped working for me. I switched to Relpax, which still works for me. When perimenopause hit, my migraines increased in frequency and intensity. My neuro put me on Topamax, which has been a Godsend for me. After surving the initial 8 weeks of crappy side effects, I have been almost migraine-free for 2 years for the first time in my life. It also has kept my weight down, which is a GREAT side effect.

ladyastro

12/13/11 6:29pm

To Cal Mom et al!

Thanks for your reply. My neuro didn't want me on Topamax (also known as dopamax:) because of the ,"anorexia factor,' he said, because my weight is normal. However, considering that no other trytan works for me but Imitrex, and I'm stuck in the horrible clutches of rebound, I'm going to make an appt. and ask for an RX of Topamax. What were your side effects??

I also agree that way more research needs to be done to find a drug that doesn't make BIG Pharma richer(good luck)..ie no rebound effect like Glaxco's sumatriptans. My neurologist says there is a drug in trials that targets a neuro peptide, and this could be the next great hope for all of us who suffer from migraines and rebound.

califmom2

12/13/11 6:51pm

My weight is normal also but w/perimenopause it was getting to be a fight to keep it that way! My initial side effects were insomnia, tingling of the hands and feet in the morning, and of course the stupidity. I kept "losing" words and was a just a bit foggy. The insomnia went away after about a month, the tingling after about six months and the stupidity about six months. My migraines were affecting my life so much, however, that I just didn't care. I felt like I'd rather give up 10% of my brain (not to brag, but I could spare it) than to suffer any more. Now I'm back to normal (I think!). My insurance doesn't pay for prescriptions. I'm using 75 mg. and it costs me $85/month at Walgreens for the generic.

ladyastro

12/13/11 8:15pm

How long did it take for your migraines to slack off when u started Topamax? I already have the brain fog of menopause. Insomnia was a wicked gift of menopause, too...I don't want more of it. I take melatonin that my compound pharmacist makes, which helps. Maybe the Topamax can be taken earlier so it doesn't affect the sleep cycle as much or at all. Our chemistries are unique, though, so let's see. I'm hopeful, for now, that maybe this might decrease the amount of migraines...that would be a blessing for me. I can't imagine not having any at all!

califmom2

12/13/11 8:29pm

It was almost immediate. And after the initial side effect insomnia, the Topamax actually made me sleepy--I take it at night for that reason. I have only had 4 migraines in the 2 years I have been taking it and they were stopped by the Relpax. 2 of them were triggered by dental problems.

Everyone is different; there are those for whom the side effects are horrible and intolerable. For me, Topamax has been fantastic. It took my doc 2 years to talk me into it because of all the negative stuff I had read about it online and he said I would have to tough out the initial side effects, but it woud be worth it. He was right.

Melanie Jane

12/13/11 1:21pm

Hello Laurie,

I've also experienced chronic daily headache and transformed migraine and know what a toll on your life it can take. I also understand the feeling of trying to reach out to others and wondering if anyone is listening! Have you discovered the part of this site called the Forum yet? The link to the Forum is to the left of this column of replies, in the box titled "Resources" at the very bottom. You have to register separately there to participate, but once you do, you'll find many active "conversations" going on about all aspects of living with migraine. Many of the "regulars" have been dealing with chronic migraines for many years and are very supportive and willing to share their experiences.

Don't give up! We're listening!

Nancy Harris Bonk, Health Guide

12/13/11 1:52pm

It's nice to see you again, and no you are not alone. The number of people who deal with daily chronic head and Migraine pain is staggering. In fact there are way too many of us suffering. Forgive me while I go on my little soapbox, but this is why WE need to take a stand and demand more money spent for research just like breast cancer and MS patients have done. Signing the petition at the AHDA is just one step we all can take to help bring more attention to Migraines and headache disorders....ok, I'm done..

Now, on to you. Lots of validation here. You most definately are not alone. But Migraine is so isolating it can seem that way. Have you kept a Migraine diary lately? I can see those eyes rolling now! In cas you haven't, you might want to try one - it is possible to see some pretty odd changes in our Migraine patterns we are even aware of in our diary once things are written down. And would you believe only 1.5 cups of coffee a day had me dependent on it and creating a moh-like situation. Waking up with daily head pain.....it is helping somewhat.

Anyway, we do understand, and the information above is just meant as helpful suggestions, not to be a pain in the tush! Keep talking, it really does help. I find the more I isolate, the worse I feel....how about you?

Happy Holidays

Nancy

1026laurie

12/13/11 6:38pm

Thank you for your words of encouragement. I have gone back to keeping a diary since I have started with Botox injections, I am on my second round. The initial response to both injections was terrible. For 2-3 weeks post injection I had body aches, increase in severity of my migraines, fever with chills and intense pain with muscle spasms in my neck and shoulders. When that passes I have not noticed an improvement in my migraines, actually with the last series of injections they may even have gotten worse. It is hard to tell this time of year as I am very sensitive to weather changes, as well as hayfever type allergies especially when these fronts bring in all kinds of pollen and junk. My pain level has not gone below 6 since the last injections. Right now my life is not day by day but hour to hour making it difficult to make plans & missing holiday events. Anybody with chronic daily migraines can sympathize.

ladyastro

12/13/11 8:24pm

1026laurie

I started having Botox injections, specific for migraines, 10 years ago. The injections always trigger a migraine for me. I love the cosmetic result, of course, and have continued to use it for that but, I did not get the migraine relief I was after. The new protocol, for those having 15 migraines a month or more involves multiple (40 something) injections in the head and neck, and face my neurologist told me. It sounds like u might have had this. Right now I am a candidate because of the amount of migraines I'm having due to Imitrex rebound, but neither I nor my neuro feels it will solve my problem. Consider what calmom said about Topamax as a possibility for u, 2!

1026laurie

12/14/11 10:08am

Thanks for your response. I have been tried on Topamax on 3 seperate occasions without much success with migraines. However I did get lost in San Antonio while driving home one day. Another trial was discontinued after I got stopped by the police for eratic driving. Thank God my husband was able to come get me and take me home and I was not ticketed. As far as the Botox, my 1st round did involve more than 30 injections. Since I did have so many problems after the 1st bout, he decreased to 20+ injections. It just seem for one reason or another I fail to respond to any of the treaments prescribed. I am so frustrated, that is way I wanted to find out if I was alone in my quest for manageable migraines. They have even tried Methodone and Oxycontin on regulared daily schedule (not at the same time). First of all they made me both stupid and then I started to fall and after one black eye, mulitiple bruises & broken furniture and a wrist fracture those trials were discontinued. Now I have Dilaudid, Norco and Baclofen that I can take when needed, which is daily and they do offer relief but then I am always laying down or asleep. I even have an occipital stimulator for about 4 years now. I think initially the stimulator helped but that help has gradually decreased. I turned it off 3 weeks ago to test my suspicions and have not noticed any difference.

***I still haven't had anyone admit to constant, daily pain. Am I the only one?

I do not want to be that person that only talks about this disease, but that is difficult since it is enter-twined in my life daily.

ladyastro

12/14/11 12:43pm

Wow, Laurie....!!!

I had a client (I'm an astrologer) who had a story similar to yours. She was taking Imitrex everyday (rebounding like me). It stopped working and she took an overdose of sleeping pills, was discovered and was sent directly to rehab by her husband. She went to Sierra Tucson, for rehab, and was put on a variety of drugs like you are on now, and Topamax. When I saw her a few months ago now she was down from 30 migraines a month to 2, but she was barely functional. She could not work. Migraine varies from person-to-person, I'm discovering. What works for me, won't work for u. My cousin has migraines..2 a month, and Imitrex takes them away and she is great, traveling around the world in her job. Perhaps u might consider a new neurologist..just to get a fresh approach to your case. It's so frustrating, and being in pain so frequently really zaps your energy. I still try and hit the gym 3x a week, because exercise stimulates those endorphins, and helps me to feel better..for the moment.

Cris1971

12/14/11 2:16pm

I guess I was not clear in my last post, I have had some levle of pain evey day for the last 18 months. Most days its 3-5 but at least 3 days a week its 7 or higher. I have not found any abortives that work for me, so I rely on my muscle relaxers and nausea meds, and save the pain meds for the really bad days.

Right now I am working on staying positive, I have a Son with special needs, and we are focassing on getting a good program in place for him. Every little victory needs to be celabrated. I hope today is a better day for you, sometimes knowing you are not alone is what you need to get through the day.

1026laurie

12/15/11 8:26am

I'm sorry I must have inadvertently missed that part of your post. All preventative meds, either I can't take or they don't work. I have even had 3 DHE infusions as an outpatient with 2-3 hours of relief then right back to where I was. I have this tremendous amount of gulit from being unable to care for my husband and son on day to day stuff, meals, laundry, grocery shopping, etc..... Big stuff, like Christmas shopping seem almost impossible, but I did get it done, slowly but steady and the internet has been a God-send. I am a spiritual person and am unable to attend mass. My migraine specialist told me that my condition gives me a mass "pass"! Even with the great support I get from my husband & son, it saddens me the response from my family (siblings & parents). I try not to dwell on the negative but with our past of being so close to "we aren't going to ask, we dont' want to hear it" and here's the best one "as long as you are taking all those pills you are not welcome in my home!" It hurts deep.

Cris1971

12/15/11 6:23pm

I understand, My MIL comes and cleans my house. I have friends go shopping for me. I consider it a good day I f I can drive myself to my Dr appts and maybe get the kids from school. My girls are 10 and 13 and make dinner most nights. I can't help with homework, or volenter in there class, my kids are behind on ther dental checkups. My Son has special need and need so much more than I can give him right now. I want them to have the Mother I used to be. My poor Husband, at one time I told him he should become a preist.

I am also a very spiritual person and miss ourcongergation meetings about %90 of the time, On and On and On.....

Sometimes I find it more deppressing to know other people suffer as much as I do, but then I realise that we all have our own struggles, if it was not this it would be something els. We have a community and help eachother hold on.

DE11

1/ 2/12 10:37pm

Hi, I have read through half of the posts, and I have DAILY headache pain that varies in intensity throughout the day. It never goes below a 3-4. But I imagine it is something most people would take an aspirin or tylenol for. It also can move from spot to spot! For 27 MONTHS, over 2 years, I have been in Daily Pain! YOU ARE NOT ALONE. I also feel alone. I feel crazy. I am so used to the dull ache that I continue to work as a teacher. It keeps my mind busy, and some days that works. Other days it is so painful, but it is more painful to be home with a high energy 5 year old daughter and barking dogs. I am on 7 meds and am doing better now than a year ago and am seeing a 2nd neurologist. He seems to be a gem. He specializes in migraines. I am in his top 10 of unsolvable patients however. We are trying hormones now, so I HOPE that when I enter menopause this will subside, decrease or end!!

sacobb

12/13/11 10:54pm

so far this year i have had 183 migraines. i live with my 39 year old son and 74 yr. old husband. God love them for understanding this situation. i am 60 yrs. old. i pray you get the relief you so deserve. heavenflyer2003

luvdabeach

12/15/11 7:33am

No you are not!! I am sorry that you are feeling that way.. I was like that for 3.5 years--everyday, flucuating... a huge NUMBER of meds--trial and error.. anyway, the newest "cocktail" of meds--50 mgs of nortriptlyne & 160 mgs of Verapamil, seems to be working.. I've only used my Maxalt 3 times last month and only 1 this week. A significant reduction.. Wow, Im back to who I was a long time ago... keep trying, get support...you are not alone!!!

Winnyninnypoopoo

12/15/11 8:18am

This may be already in some of the other comments - I suffer from a fairly rare or probably commonly misdiagnosed headache condition called hemicrainia continua (half a head headache continually) the only medication that helps is indomethacin, not commonly subscribed. I have had mine since 2007. I use an occipital stimulator to help control the pain. Pain killers really don't work for this, nor do traditional migraine medications.

Hope this helps!!!

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I Have a Headache

12/15/11 11:03am

I have had Chronic daily migraines for 10 years. I am at the point of near hopelessness. I have gone to migraine specialists around the country and have yet to find an answer to my pain. I feel isolated and guilty toward my family and friends. I, too, call my bedroom "the batcave" because it is where I, ultimately, find myself at some point during every day due to the pain, nausea, light sensitivity and noise sensitivity. I am in my last round of Botox injections and they have not helped at all. I am also taking Topamax and Verapamil; but, have found myself being dangerously close to being underweight due to the Topamax. The support of my husband, children, sister, a very close friend and my faith are all that have kept me going. However, I find myself falling into a deep depression with the prospect that my neurologist has no more ideas after the Botox injections are completed. I will not give up. But, I understand your plight - believe me. God bless you! Keep fighting!

1026laurie

12/15/11 1:01pm

I really feel your pain! It was my Neurologist that sent me to a Pain Management MD after he had exhausted his bag of tricks. She has been a God send. It was not an overnight miracle, it several tries with different combo of meds, and I have had some improvement. I measure my improvement by how many pain meds are left in the bottle after 4 weeks when it is time to see her again. I have gone to counting the days and calculating how many pills I could take a day to make them last til I saw her again to one month of pain meds will last me about 6 weeks. Right now I'm going through a rough patch, I hurt all the time, I feel like all I ever talk about to my husband and son are my headaches, for some reason my sleeping pattern is all messed up and that doesn't help ( I do not do well with sleep deprevation). I did see my pysch doc last week and he increased my depression med so hopefully that will help with this funk. I am just tired of being only all about the pain and/or migraine. Even the computer screen makes it worse, but I feel right now this is my only link to the outside world. Okay enough with the pity party.

You should consider consulting a Pain MD. Some of my tips would be- Make sure they will treat migraine pain, ask your Neuro for any suggestions and all pain MDs are created equal. The first one I saw treated me like a drug addict I almost had to beg for meds and was not a people person at all. The second one has been an angel. I have to go now, but good luck, and keep on trying.

I Have a Headache

12/15/11 2:25pm

Thanks for the reply. I know what you mean about feeling as though all you talk about is pain and migraines. I consciously try to avoid it. But, when that IS your life, it is hard. It is also hard for me to look at the bright computer screen. But, again, it is usually my only means of connection with the outside world because I rarely get out except for doctor appointments or if I have to push myself to get groceries or something my husband or kids can't do for some reason or another.

Thank you for the suggestion regarding a pain medication doctor. I have been through a pain management program. I use some of the tips I learned there. But, I found they were very anti-medication and sometimes, you just NEED some pain medication to make it to that important event for your child or your family. My primary provider was sympathetic to that. And, I am very frugal as to when I use pain medication.

What I have found most important through my journey is that we must be our own advocate. As I said, the worst thing for me at this point is I am not sure where to turn after the neurologist confirms that the Botox has failed.

That is why I am getting more and more depressed and feel as though I am falling into a dark abyss. I do see my phsychiatrist next week and will be sure to tell him I am feeling this way. I haven't given up and do not intend to do so now. It is just SO HARD!!!

mamalu

12/16/11 2:04am

I have been thru the stuff you comment on and know ur pain mamalu

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1026laurie

12/16/11 9:12am

I am so grateful for everyone's support, but I feel bad for the amount of people that are suffering as I am.

About finding a Pain MD, it has been my experience through research, personal experience, and others' comments that a practioner who is in a solo practice, rather than multi-physician or a "pain" clinic, will prove to be more sympathetic to your pain level. The migraine specialist drilled this into me- You have a right not to be in pain and you need to keep reminding others. He also spoke of a "Chronic Pain Act" which basically says the same thing. Pain is not normal, even if no cause is found, your rights remain the same, treat the pain.

Sometimes I almost feel like I am sabatoge (I don't think I smelled that right) any new thing or med that they try. Does that sound odd? I, above all want something to work and will try almost anything they suggest. I have even begged my Neuro to put me in a medical induced coma, in the hopes that when I do wake up the pain will be gone!

Take it easy on yourself, if you had any other condition, that was visible to others, would you still feel guilty about having to change your usual routine?

Thank you for taking the time and effort, sitting in front of the computer, to comfort a fellow migraineur.

stormymigraine

12/15/11 12:47pm

You're not alone, love. I get migraines 4-6 times per week on average, always with aura. Sometimes my auras will last days before the headaches hits. It's a toss-up for which is worse. I've tried most of the things you've tried, as well as adjusting my diet. I'm currently eradicating sugar from my diet to see if that's a trigger. I don't know if anyone on here has heard of PFOs and ASDs (essentially, a hole in the heart), but untreatable migraines can often be associated with that. I had a huge hole in my heart, which unfortunately we didn't find until after I had a stroke last year. I intuitively thought I might have one, which I did. I went to a cardiologist five years ago and asked him to look for one. He did every test under the sun and said I didn't. Then my stroke hit and I went to a specialist in PFOs and he found the hole within 30 minutes.

You should listen to your instincts when it comes to your body. Guilt, though, is a huge tripwire. Your headaches are damaging enough, I completely understand the isolation and frustration you must be feeling, especially around the holidays. One of my favorite brothers and his family want to visit on Christmas day, but their children scream so loud it always sets off my migraine. If I don't have the proper "cocktail" (of pain meds and triptans), I, too, adjust my social schedule. Sometimes, when I have to work, I will just make others fit my needs, lol. I was at a board meeting yesterday and kept turning down the lights. Part of dealing with your migraines is not dealing with it alone. It's inconvenient for everyone, but let others adjust to your headache. The world won't explode. Don't feel guilty, darling!

It's hard to live with. That feeling of being alone is rooted in despair. Sometimes I get intensely sad (usually I will get an adrenaline rush of anger) prior to the headache. I don't know that you will find a cure or a different approach to treating your headaches, but know that there are a few people out there who also suffer like you, as much as you do, and can truly empathize with how you feel. Not just with the pain, but with the emotional aftermath of dealing with it, with no end in sight. Day after day.

Take things one day at a time. And give yourself props for reaching out for support.

gail

12/15/11 1:38pm

If you try Topomax do be alert to the side effects. For me, not only did it not help with my almost-daily migraines, but it made eating next to impossible, dulled my mind, and worst of all sent me into a depression that none of my doctors attributed to the drug (but I felt immediately better after I discontinued it).

I am having some success w/a combination of weekly acupuncture, 2 tablets/day of "Migrelief" (riboflavin, magnesium and feverfew) + 2 tablets Petodolex (butterbur). It took a few months to see the benefits of this regime but b/c it is w/o discernable side effects (though you do need to be careful about the quality of the butterbur), I think it is worth trying. I am down to 1-4 Maxalts/month after having an almost constant migraine.

SaraBatch

12/15/11 11:06pm

I too have had almost daily pain for about 4-5 years now. I lost my job, was denied for private and gov't disability, and have not found a preventative that works. On top of everything I Just found out that I am infertile. I am now able to work for my boyfriend, who hopefully won't fire me, but it is impossible for me to work all the time. I feel your pain, literally. It sounds like you have a lot of good doctors on board, and have a wonderful family. Give a big thanks for them everyday, because I think that's half the battle. Hang in there for your son and husband. I have a family friend who just recently committed suicide due to chronic pain, and although I've been to that place as well, I just try to take it day by day, hour by hour, like you said. Your support group is essential, and the people on HealthCentral are AWESOME! Good luck!

1026laurie

12/17/11 8:26pm

My work history included 12+ years as the only office nurse for an Internist and was responsible for gathering information for the responses required when we contacted by SSI for any of our patient's application for disablity. One aspect I learned from the process is "the sqeaky wheel gets the oil", in other words don't GIVE UP, appeal and re-appeal as many time as it takes for disability benefits,

SaraBatch

12/17/11 9:07pm

Thanks Laurie! I will remember that when (hopefully if) I have to reapply. I can't decide whether trying to work creates more stress and more sickness, or whether I should do anything I can to keep working. Depending how I feel on any given day, my feelings change on the subject. I'll tell you though, losing my job, and then having to sue my employer, was the most traumatic thing I have ever gone through. A good lawyer to help with disability is VERY, VERY hard to find. I should sue the lawyer for malpractice who was supposed to help me with my disability, but then stopped returning my calls, but I don't have the energy or money. Anyway, this process is difficult for all of us. The more we can educate people about migraines, the better!

1026laurie

12/18/11 1:37am

It is so horrible the way we are treated by employers and just the general public. Again the subject of having an illness that is more visible gets more empathy and overall treated completed different.

I'm no personal history about choosing the right lawyer. I do have a very close friend who was diagnosed with Ramsey-Hunt Syndrome, a condition that involves shingles attacking the nerve from your ear, which not only effects your balance, her left side of her face and eye droops, but she has lost hearing in that ear. Her first application for disablity was denied and she was set up for a hearing to determine her disabilty. It less than 5 seconds when they discovered her hearing loss and BOOM just like that she was declared having a disabilty. The disabilty process that we currently use is really problem laden.

Danielle

12/17/11 11:35am

No, you are not alone. My Neurologist has informed me in the past that individuals like yourself with hard to treat migraines are a minority less than 1%. Most migraines are treatable with the right type of migraines preventative medication and abortive.

I like yourself is a nurse and had to stop working on the nursing floors because of the stress which triggered my migraines. I now work a less stressful job.

My migraines are not daily but when I do get migraines it can last for over 48 hours. I usually have about 2 migraines a week but they vary some I can treat right away some I cannot and now I am on FMLA to protect my job.

I have been on every preventive migraine medication that you can name and still have problems controlling my migraines.

How did you file for disability? Did you go through an attorney? I am curious because I may have to go on disability if I keep missing work.

1026laurie

12/17/11 8:03pm

Your story sounds so much like mine and I honestly feel your pain. In regards to my disablity application, I did it by myself on line and my migraine specialist had already warned me not to use Migraine disease as your primary disablity, I was able to use depression, which he had informed me that any time you can use some kind of mental disease it is to your benefit. If you can call depression a plus it seems off, but whatever does the trick. But definetly reccomend not using migraine disease as primaray disease. I hope you have a secondary or even third choice to use. I think I put migraine second. But I did have a copy of my migraine specialist's first consultation and was able to "pull" several diagnosis/problems like, I can't remember the proper medical terminology, but it means extreme muscle tension/spasms of my neck and shoulders. Some of my other documented diagnosis are hypertension, herniated discs were the main ones I used. Use everything you can think of, hopefully you have a good relationship with any/all MD's offices where you are a patient and they may be able to offer some suggestions. I also checked with my MDs' offices to make sure that if there would be a charge to release there information to the disablity process, so that would not interfere in the process. I did have to go to SS offices once, they needed to see my original birth certificate, SS card and something else (I can't think of right now). Be warned, the actual completion of the application took at least 4 hours. I'm not quite sure how, but I did get approved on my first application, which came as a shock not only to me but to my MDs as well. One more pointer I would like to offer is to copy all forms completed online, when I got to the SSI office they could not find my online application until I was able to show them my copies. I offer the best of luck to you.

Danielle

12/19/11 12:30am

Danielle

12/27/11 8:22am

Thanks Laurie for information on Disability.. I did check out the website for disability . hope you are feeling well today

Danielle

12/17/11 12:00pm

No, you are not alone. My Neurologist has informed me in the past that individuals like yourself with hard to treat migraines are a minority less than 1%. Most migraines are treatable with the right type of migraines preventative medication and abortive.

I like yourself is a nurse and had to stop working on the nursing floors because of the stress which triggered my migraines. I now work a less stressful job.

My migraines are not daily but when I do get migraines it can last for over 48 hours. I usually have about 2 migraines a week but they vary some I can treat right away some I cannot and now I am on FMLA to protect my job.

I have been on every preventive migraine medication that you can name and still have problems controlling my migraines.

How did you file for disability? Did you go through an attorney? I am curious because I may have to go on disability if I keep missing work.

Tired of Head Pain

12/22/11 7:20pm

You have certainly gotten a lot of comments from you initial posts, but I have a few things I would like to add that may help your frustration and feelings of helplessness with this disease. I personally have been at it for just about 43 years now, and I can say that I would definitely have had a different kind of life without the migraines, but I have learned a lot from them too. I am not married, live alone, so be thankful for the family support you have, and stop berating yourself for what you cannot do, but be thankful for what you have, and do what you can.

I know what living with migraines every day is like. I have been doing it for a long long time. I grew up with a mother who did not believe in pain that she had not experience herself and she had never had a headache in her life, let alone a migraine, so when mine started at age 19, she thought I was not telling her the truth and was trying to get out of going to school, and did not believe a word I said. That remained true until about a year and a half before she died when she contracted shingles and a bad case of post herpectic neuralgia and experienced constant pain - the 24/7 kind - for the first time. She asked me if this was what a migraine was like. When I told her it was not the same but it was similar in the intensity and the non-stop quality, she commented that she finally understood what I was talking about and apologiized for not believing me all those years. Be grateful for what you have.

I lived through many years of taking medication and going to school, work, social occasions, whatever in some kind of drugged state because that was what I was supposed to do. I was so indoctrinated by my Mother I did not know there was any other way. I went to headache specialists who gave me medications which worked on my daily migraines for a while, but eventually stopped working, and I had to increase the doses, only to have those not work either. I have taken more medications than I care to list, including Topomax which everyone seems to be avoiding, but it does really lessen the number of migraines - until it doesn't, and that threshold is different for everyone. All medications work, until they don't. I have tried all the triptans, and now none of them work for me. So I keep pushing along, doing the best I can with what I have to keep the daily migraines at bay and the really big acute migraines further apart - they last about 72 hours or more, and when they hit, I really have nothing right now that will take them out because of rebound reactions that are much worse that the migraines themselves.

I have developed a very high pain tolerance, and am switching to a new migraine specialist, with the help of a very good psychiatrist and pain doctor who is also a neurologist am hopeful that a regimen can be found to help me out of the very lonely place I live in now. I have been in the place you are in, or the place you are describing. There is only one way out, and that is to pick yourself up, do what you can, and move on.

I have done as much as I can with my life and intend to do much more. Just keep moving, Laurie. You have a husband that loves you and a son to love, who loves you back. When you hurt, rest, but cherish the moments you don't and make the most of them, if you can. Life is precious, use every minute.

Take care of yourself. You are young and vital. You will find a way to manage all this. I know you will.

Nancy Harris Bonk, Health Guide

12/22/11 8:35pm

Perfectly put, Tired! Your post brought tears to my eyes not out of sadness, rather, total understanding.

Thank you.

1026laurie

12/23/11 9:20am

Wow!!! If that don't make you quit your little pity party and march on. I usually am a very positive person. I try not to take anything for granted. Because of my disablity acceptance, I did not realize because I have a minor, my son is 17 now, that he too would be receiving monthly moneyes, which I take each check every month and half goes to his ckecking and half goes to his savings accounts. We have never been wealthy and sometimes it has just been enough to get by. My husband work 12-14hr days, 6 days usually every week, he was raised with such a strong work ethic and is of the mind set, THIS is how to take care of his family. It pains me to see him crawl out of bed every morning, he had a very serious accident at home about 4 years ago, broke and dislocated all bones in his ankle and lower leg, as well as tore all cartiliage and tendons in the area and began having problems with other joints because he was having to compensate for not using his right leg. The cherry on the Sunday was when at the end of his FMLA, the company he worked for 20+ years let him go. Anyway he found another job fairly quickly and he is so much happier at. Back to my original point, my disablity status has allowed my son to save enough money to buy his first car, as well as other items, we could have not neccessarily afforded, this is one part of the silver lining.

At the time of my original post, I was in a dark place. but now due to everyone's encouragement and support, I will fight on to improve my quality of life. And be grateful for the positives and not always dwell on the negatives.

A most sincere and kindly Thank You to all.

Tired of Head Pain

12/23/11 9:07pm

Nancy -

I appreciate your reply to me. It takes a lot of fortitude and hard work on a daily basis to keep going as you know. I have worked a long time to be able to get up every day looking forward in spite of the pain. It is not an easy thing to do, but I do thank you for your kind words. Somehow it makes it all worthwhile.

Tired of Head Pain

12/23/11 9:10pm

Laurie -

Your are welcome! That is what these share posts are for. To give support to others going through the same thing you are. You are not alone in any of this, do remember that. There are many people of all ages going through what you are, never hesitate to check in anytime you need to. Have a great holiday with your family!

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