Updates, Frustrations, Insurance, Holidays

By bri83 Friday, December 11, 2009

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I went forward with my neurologist appointment last month. I was able to address my concerns on my medication and his view on disability. While I wasn't thrilled with his response on the disability, he lowered the dose of the amitryptiline and the constipation has decreased a lot. I am also trying Treximet as an abortive and have a prescription for prednisone should I get a migraine that lasts more than 4 days. I had a few of those previous to my visit and he thinks that should help. I have hope it will too.

As for the disability, he basically said that there isn't documented evidence that migraines are a disability. Yes, they can be disabling and for a period of time, but there are no medical journals or documents stating that it is in fact a disability. He is working with a disability lawyer to possibly write an article about how they are not a disability. Does this tickle me pink? Not at all. Does he treat my migraines better than previous doctors? Yes, he really does. He is a really nice guy and we just have to agree to disagree.

Since that visit, the Treximet has proven to work really well. I have used it twice and to my surprise it worked. I was hesitant because I used Imitrex in the past. The doctor explained that the Imitrex has improved since I was 15 and the medication is better dosed, especially with naproxen. My previous neurologist didn't think it was worth trying since Imitrex didn't work when I was 15 (11 years ago).

All of this may not matter though because I just received a letter yesterday from my insurance company. My doctor will not be accepting my insurance come January. This leaves me a pit peeved since I just saw the doctor a few weeks ago and it would have been nice of him (or his office) to mention it. My next appointment of course is in February. The options I have are to request continuing coverage (yea, I am sure that will happen...when pigs fly) or find a new doctor.

I feel like every time I make progress in the migraine department, something comes along to knock me back a few steps. It is very frustrating and of course I can begin to feel the pounding start in my temples. I have to think about this and see what can do, and quickly of course.

With the holidays, I always get migraines. They happen the worst the week of Christmas when my boyfriend comes home with me (he comes every other year). He needs constant stimulation and activity. This year will probably be worse because his father is having a lot of issues and whenever he is away from him, he worries non-stop. As long as he is distracted and doesn't check in with him, he is happy and content. So this year, I have done my best to plan little activities every day and I am hoping this will keep him happy. I also have my sister who has anger issues and she has a tendency to upset me or my boyfriend. Let's just say, that Christmas week is just full of excitement and my head doesn't miss an opportunity to burst.

I have been home since Thanksgiving and I am dying to go back to my boyfriends for a small (hopefully) quiet visit before the Christmas week. My head needs it, my body needs it, and my sanity needs it!

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Comments (10) | Add comment

mcmurraychick

12/12/09 10:03am

i so know how you feel with the insurance mess. treximet is the only thing that works for me ( except a shot) and my insurance refuses to cover it ( not evena part of it)

as my PCP told me, that is how they work. we finally find something that works and they take it away for something that don't

Nancy Harris Bonk, Health Guide

12/12/09 7:45pm

Goodness! No wonder your head hurts. Do what you can do and let the rest go.

Nancy Harris Bonk, Health Guide

12/14/09 5:02pm

Oh Bri- what a horrible answer to have for you - the rest of my answer must have been cut off. I am SO very sorry.

As I was saying, letting go of what you can may be helpful in reducing your stress level, maybe your boyfriend (how old is he?) could give you a hand and find his own things to do to take some of the stress of you this year. Have a conversation with him about how you are feeling and how much stress having to plan his activites causes you, which in turn may trigger a Migraine during an already tough season.

No on to that doctor. What is he talking about? Migraine is the 12th most disabling disease suffered by Americans and headache disorders are some of the most common neurologic disorders affecting over 90% of all Americans. Of course it can be disabling for some people. I think it is time for a new doctor, what do you think? Clearly, if he doesn't realize how significant Migraine is in your life, or not even willing to listen, as we like to say around here, "if your doctor's not listening, FIRE his sorry butt!"

But then again, you won't have to fire him - due to your insurance issue. Maybe this is a good thing. Have you looked at our Patient recommended Migraine specialist list lately? Even if you were to go to one appointment with an expert, come up with a Migraine management plan, then you could work with a local neurologist to keep the plan up! Check out these links: Migraine and Headache Specialists - What's So Special? and Patient Recommended Specialists.

I hope this helps, let me know what you think, bri?

bri83

12/14/09 5:39pm

Well the boyfriend issues may be resolving themselves and turning into something else stressful. I have to wait and see about that.

As for the doctor, I don't know where he is getting his lack of information. I could have sworn there were many articles and documentation about migraines being a disability, but whatever. Yes, it looks like my insurance is kicking me out from the doctor anyway. I have been to a lot of neurologists and pain clinics in the Philadelphia area and that is why I headed to NY. I wasn't finding what I needed.

There is one doctor I would like to see, who is highly recommended, in my area but he was at the Jefferson Headache center and I already saw a doctor there. For some reason when I try to switch to another person in doctors offices, I get a real hard time. Why it is such a big deal I don't know. Plus, I don't know if I could return because I just up and left one day and didn't give notice. It's been almost 2 years and I think the office would give me a hard time about that.

There is a woman in that office who pretty much runs EVERYTHING. You cannot do anything without going through her. And I mean ANYTHING! It is amazing because she is a secretary or something and all the doctors and nurses snap at her command. So, if she were to tell me no, I can't come back, I wouldn't be coming back. I don't know if anyone else will read the post, but if they go to Jefferson they know who I am talking about.

Anyway, I just feel like I am hitting a brick wall right now. I don't know what doctor to see next. Trigger point injections sometimes work. I could go to pain management and try those out. I did physical therapy last winter and that helped too. I suppose I could find a pain center and try to work with them. I do thank you for your advice. I always take it into consideration and appreciate it very much.

As for your first remark, it's no problem. I didn't really think much of it to be honest. I just thought you might have been busy. lol

I hope you have a wonderful holiday if I don't hear from you before then!

Bri

Cherib

12/14/09 3:44pm

I read your article and am most disturbed by your doctors blatant denial that Migraines are a disability. Having suffered all of my life, and now 49 years old, I know exactly how disabling they are. I have been on disability for over 6 years for Migraine headaches. There is hope for your disability yet. Yet you need to get yourself to a doctor who accepts this as an actual disorder. You say your doctor is helping you more than any other, however, it sounds like he is biased or prejudiced against Migraine sufferers. I have been dealing with this for years, and currently live in a town where it has been impossible to get help because doctors here don't want to accept Medicare patients under the age of 65. Another prejudice. I have lived here for over 2 years and cannot get a regular doctor. I have to go to the clinic for treatment of even a cold. The emergency room is helpful, however, every doctor in this town is afraid to prescribe pain treatment drugs, because bureaucrats in this area have threatened legal actions against those doctors for prescribing even one pain medicine to needy patients. This is a terrible misuse of the medical field and a gross neglect by the medical community. There are many pain treatment centers across the nation, and I am unfortunately going to have to be forced to go to one of those for treatment of my migraines. The closest is over an hour away, and the other is more than 2 hours away. This is my only hope for pain relief. I would suggest that you also read the studies about RSD and it's connection to those of us with chronic Migraine. There are studies that indicate very strongly that there is a direct connection between developing RSD, Reflex Sympathetic Dystrophy Syndrome, associated with chronic migraine. Good luck, keep trucking and insist on the help you need. Get a new doctor who will not discriminate against you. This is a crime. God's speed to all who read this and to you.

Nancy Harris Bonk, Health Guide

12/14/09 5:16pm

Hi,

Glad to seeing you're posting and I hope you see my re-post to bri by now! You are so right about Migraine being a disability. I'm sorry to hear yours are so severe.

Have you tried seeing a Migraine specialist? I understand about on ssdi as I am now. Something to think about is seeing an expert once (a Migraine specialist) then work with a local doctor to implement the plan. Here is our list of Patient recommended specialists.

And what is the deal with being treated differently with medicare if you are under 65? I don't like it one bit!

bri83

12/14/09 5:53pm

As I said to Nancy, I have no idea where this doctor is getting his lack of resources (or not getting). I mean my boyfriend and I looked at each other completely baffled by his response. If I am on disability and the state accepts it, how could he say it isn't recognized as a disability? I have met, through the internet, quite a few people on disability for migraines. And there are plenty of disabilities out there that are documented and don't make you disabled every day. I met someone who was bi-polar and on disability for it. Their symptoms weren't exacerbated every day and I am sure there are many migraine sufferers out there aside from me who don't have exacerbated symptoms every day either.

Anyway, his office won't be accepting my insurance anymore. I can file a continuance, and I might, but I feel certain my insurance will deny it. They deny everything else! lol If they do let me continue I would at least go to another appointment until I can find some where else to go. I have pretty much run out of neurologists and headache specialists in PA. The one who comes highly recommended works in the last headache center I was at. The doctor there kept wanting me to do Botox and I knew it wasn't working. So I just stop going there without saying anything. I don't know if they would let me back in, especially to see a different doctor. I always have problems switching doctors in the same office or practice.

Thank you for your thoughts and I will keep you updated on my share post

Bri

sassy

12/17/09 1:58pm

Good for you, Cherib that you have sucessfully won disability benefits for migraine disease. In my state (Michigan) I've been fighting for 6 years. The disablility examiners & judges use very backwards criteria. It seems that those who are able to find someone to financially support them & establish a record that appears as if they are unable to work are the ones that get the SSI & SSDI. Like the trust funders & freeloaders who already don't need the help. This is so upsetting to someone like me who doesn't have anyone but myself & the only way to prove a disability is to become homeless from no income. I'm 55 & have been told that it will be another 2 years to appeal my latest denial. Talk about a crime...........

mom24monsters

12/17/09 3:15pm

Well, when pigs fly, it's you who will have to clean up the mess, unfortunately! LOL As for doctors, they never tell one when they are changing. I had a doctor a few years ago that knew for four months, because their primary doctor, I don't know what he would be called, this was a general practitioner's office, just kinda dropped off the face of the earth. They knew in late December, and swore that they told everybody, but when I needed to make an appointment, they told me that they weren't taking new appointments because they were closing at the end of that week. I was furious because it didn't give me any time to find a new doctor, and at least one of my children and I were sick then, not when we were finally able to find a doctor that took our insurance. The lists of doctors that actually took our insurance were so outdated, even online, that it was very difficult to find one and we were better by the time we found a doctor.

As for Amitryptiline, I took it for three years. After about the first six months to a year, it started losing it's effectiveness, and the weight gain was horrible. I slowly took myself completely off, and noticed a big change in my migraines. They were actually less without it, and I didn't sleep as much. It took me nine months to get off of it from the 75 MG dose, three pills per day, to nothing from September to June, because if I tried too fast, I'd get sick. The weight loss was major as well. I went from 115 before taking it to 196, and though I haven't lost it all since stopping the medication, I now weigh 138, and hadn't changed my diet to try to lose the weight either.

Unless a doctor actually suffers from migraines, they have no idea how disabling they can be. They don't realize how painful they are, treating people doesn't make them know, just like watching women having babies, or delivering them, will never show or prove to a man how painful child birth really is, so unless he actually suffers from them, he'll never side with those of us who do consider them a disability. If you aren't at home, you can't always drive home, so you are stuck, and riding in a moving car only makes them worse too, and jobs aren't understanding if you come in feeling fine, and one hits all of a sudden, as they often do!

All four of my kids will be home for the next two weeks, and my migraines will be more frequent as well. It's the stress of the holidays, coupled with all of the noise that kids naturally make. They also, need things to do. We also have a dog and a kitten who love to play, and they aren't always quiet about it, but when I'm feeling good, they are all a great source of entertainment!

Good luck to you! Have a merry Christmas!

Debbie

Anonymous

12/17/09 9:55pm

Hello and first off, I am so very sorry that you suffer from Migraines. I was diagnosed with Chronic Migraine Disease and cervical Dystonia 4 years ago although I had been suffering with 3-4 per month since I was in my late teens (41 now). This disease is so unknown by the medical community and the insurance companies that it seems you have to fight for everything. I have had one continous migraine since March 2004 and have seen a dozen doctors and 70+ different medications with no success. Getting back to the disability question, I have been on full disability since my diagnosis in 2004 but it was very difficult to get my Migraine specialist to understand and complete all of the paperwork that is needed and continious. I had to prove to this specialist why I was unable to work in any capacity before she would approve my disability insurance. Once I had explained that I had lost 75% of the vision in my right eye, vomited constantly throughout the day....she reluctantly agreed. She charges me an arm and a leg providing all of the documentation, doctors notes, Independant Medical Evaluations (Paid for by Disability Company you go to one of their doctors). If their docctor does not agree it just gets worse.

Bottom line is you have paid into a Disability fund and Migraine disease is an approved condition. If you have both private and Social Security Disability policies you need to apply for both at the same time. Also, please document every phone call, email and/or conversation with the disability company. Their whole reason for being there is to find ways to deny your claim.

I wish you the very best and feel free to reply if you have any questions.

Tim

Updates, Frustrations, Insurance, Holidays

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