Migraine Help

After our 20th meeting with a different neurologist yesterday we came away with absolutely no treatment. The only thing that helps my son with his migraine is butalbital with codeine. The neurologist is no longer prescribing this and suggests that he take some aspirin. Last week he had the worst migraine he had ever had in his life and had fallen several times, was slurring his words and could not speak. I found him on the floor on the back porch where he had been for about 2 hours. The doctor sent him to get Act. Nothing showed such as a bleed or an aneurysm. I don't know where else to turn for him. The neurologist yesterday said to go to Johns Hopkins or the Jefferson Hospital in Philadelphia. At that time he asked us to leave at 9. To return or not to return. He said he was not the person that would need it. It seems that when we mention the butalbital with codeine their eyes glaze over and the session has ended. What is it with these doctors that they are so scared to help people who are in dire need? Why are they so afraid that if they help someone who does desperately need these medicines that they refused to help? I don't know where this will end up but my son has contemplated suicide several times. Any help that you can give would be appreciated. He is 33 years old, has had a migraine since 5 years old and we live in Richmond Virginia. Thank you.

REPLY

REPORT

Hello Margo,

I can't imagine how terrible it would be to suffer from migraines for 28 years.

Unfortunately your son's situation is not all that uncommon these days. He suffers from a pain that is not showing up on tests but simply isn't provable. Currently the government is doubling down on the "war against drug abuse" and they are targeting doctors who prescribe medicine to people who do not need it. Basically if they can't prove without a shadow of a doubt that your son is experiencing this pain and show that there is a reason that they are prescribing him addicting pain killers as a long term solution to provide him with a better quality of life.

I do agree that there are far too many people out there that simply lie to gain access to prescription drugs with the intent of abusing or selling them, however, it is my personal opinion that their attack has left a lot of people like your son behind. Modern medicine has come a long way but we simply don't have the answers to every possible problem which makes it hard to agree with their choice to discourage doctors from prescribing medicine without certainty of the cause.

In my honest opinion I think that if a doctor referred you to a different specialist or doctor then it is best to take the recommendation seriously. I see it more as the doctor telling you that this is beyond their capabilities and the referral is a direction to a doctor/specialist/hospital with a reputation to better handle these situations.

I wish you and your son the best and I'm sorry that the politics of medicine has left you in such a bind. Keep looking forward, it's always worth it to keep trying.

REPLY

Was this helpful? 3

I suffer from chronic migraines stemming from a TBI. After going through dozens of treatments and meds I have finally found something that works. I now get Botox injections for my migraines and they have honestly been a lifesaver. I would strongly recommend looking into it for your son. I wish you the best of luck, they are awful.

REPLY

Was this helpful? 0

I have had migraines since I was 18. It is a family disease for me. All of my moms side suffers. I have been on so many treatments over the years it is ridiculous. I couldn't take any of the preventive medications like topamax or blood pressure medications. Drugs like imitrex and maxalt did give me some level of relief, but not nearly enough and you can't take those drugs all the time. I was finally diagnosed with chronic migraine because I was having over 18 days of migraines a month. First I was on the botox injections when they became available for migraine, and they worked wonders. It was a lot of shots in the head but it kept me migraine free for 3 months each time. Then unfortunately my body does what it usually does. My metabolism and my genetic makeup has this effect where medications only work for a relatively short period of time and then stop. The botox started wearing off in the second month and it can't be redone until it has been 3 months. Thank goodness the new drug Amovig came out at that exact time. It has been a real life saver for me. It is one usually 2 shots you give yourself at home once a month and for me the migraines have finally stopped. I believe most people say they just have less migraines, but for me it has made them go away. Most insurance wont cover it yet because it is so new and expensive, but they have a support program that helps people get free months. They also work with your insurance to try and get it covered if they can't the company will give you a year of Amovig for free. I hope your son finds a treatment that works because I know the torture of migraines, and how they can practically stop your life.

REPLY

Was this helpful? 1

I had a friend with the exact same issues. Nothing helped. I kid you not, he got allergy and food sensitivity tests - changed his entire diet to gluten free Paleo - and hasn’t had a migraine in 5 years and feels like a new person. Just something to consider - diet for all of us can make unbelievable differences.

REPLY

Was this helpful? 1

I am in the same boat. I am 63 years old. I started with migraines at 2. They would wrap me in a sheet to make me still and put me in a dark room. They blamed it on allergies. They pulled the rug out, the blinds and put up shades and washable balance and a foam pillow. Saying it would get better when I had my period. Well, it didn't. Worsened. I had scans, tests, etc. So, started with midrin to start recognizing the signs to take before it began. It was a difficult 10 years. Emergency room trips. Everyone wants to blame it on stress. Or hormones. Then the midrin just was not adequate. I was missing work. So they started giving me regular fiorinal. It was better, still having to catch it within the beginning and sometimes it just had to peak. They gave me nausea medicine to take. They said it might change when I had a baby..Then it was when I had my hysterectomy. Nope! Still emergency room trips..Trying imetrix which makes me so ill and my heart wants to jump out of my chest. Went to a migraine specialist. Had me on 10 pills a day [some for seizure] to keep from having one. Then I had onw anyway. People with migraines are different. I have spent my entire life studying them and trying to find an answer. I think now it is a part of an autoimmune problem..Which developed later for me. I was married to a doctor for 25 years. I was tested for everything imaginable.

I just want to function. And not get into that state that you cant talk, eat, walk. Etc. So..Now I also take the same as your son the fiorinal with codeine. The doctors are so afraid to give it out because of this opioid scare. I don't believe in that. It is not an opioid. And unfortunately the people I have known that truly want to commit suicide are going to find a way. Once I went to the urgent med. They call it the migraine cocktail. The fiorinal with codeine, a bit of benadryl and a pinch of phenergan. Not much. You don't want to be a zombie. I have other issues that ideal with the migraines are wearing. There is an inner ear test. And brain scan would be advisable. However, find a doctor that understands and listens. People that have not had one, think oh its just a headache, get over it. Those are the people you don't need. Even friends. I am going through a bit of the same where my doctor wants to find something else or reduce mine. When I have never abused it. It is just sickening that we have to suffer because of those that abuse. I hope your will try the combination. Also I found an allergy diet and foods that go along with blood type help. I can come into an immediate migraine if I get behind a bus. So smells do affect the migraine sufferers. There is no cure. If you dont have a sympathetic doctor, then change if they are scared to give you what you need and you have not abused..Then change. I think I know more about this than most doctors. And if they want to put you on 10 pills a day. That's ridiculous too. Unless they find in a brain scan that he has had seizures. We are a high concern for stroke when we have these horrid attacks. So, it seems to me that a doctor would want to help us to ease the pain and be able to better function. Now granted I can do all this and still need bedtime. Bit a lot of times those gets me through it and I can carry on my duties. Still with an alight sick pain. But helps to be able to be strong and fight it. Takes the edge off. That makes much more sense to me.

REPLY

Was this helpful? 0

Get him in a suboxone Clinic they won't give pain medication anymore that's for addicts which I can't stand that word of course I'm addicted to pain medicine I have lots of reasons but I have to pay out-of-pocket to go see a doctor to give me medication so I don't hurt so bad and for the withdrawals I will never be paying for it till I die this is just an idea hope everything goes well God bless you and your son

REPLY

Was this helpful? 1

Re: Kevin (# 1)

Get him in a suboxone Clinic they won't give pain medication anymore that's for addicts which I can't stand that word of course I'm addicted to pain medicine I have lots of reasons but I have to pay out-of-pocket to go see a doctor to give me medication so I don't hurt so bad and for the withdrawals I will never be paying for it till I die this is just an idea hope everything goes well God bless you and your son they don't give it to the people who need it either I have a degenerative disc disease I just had neck surgery I have numerous problems and still can't find a pain management doctor they can't take people off of pain medicine completely so they put you in a clinic with a bunch of addicts but whatever it takes to take some relief off of my back and neck I'll do it I've tried shots they don't help but two weeks don't let ANYONE FOOL YOU

REPLY

Was this helpful? 2

You should NEVER go to a local neurologist for anything as serious as this. Go ONLY to a teaching/ university hospital. There is a brand new class of drugs, three months old, for example( Amovig) which might be a solution for your son...plus he should have a brain MRI. I recommend Dr. Tauriq at Hopkins, but since it is a long wait to see him, take any migraine specialist you can. Not all neurologists are migraine specialists. For example, I have one for my migraines, another for my vestibular issues, and a third for my small fibre neuropathy. This last is a neuromuscular neurologist...so you see why going to a teaching university hospital would be best for your son.

REPLY

Was this helpful? 0

JFYI, Butalbital w Codeine is one of the most innocuous drug combinations devised for migraines. Years ago I was prescribed Numorphan 10mg tablets and they worked fine* but I unfortunately I think they are unavailable in this country.

*Plus, they cooked up soooo clear and translucent blue!

REPLY

Was this helpful? 0

Has your son seen a pain specialist in your area? If not, that is where you should take him.

REPLY

Was this helpful? 0

Has he looked into the possibility of food allergies that may trigger his migraine

I was able to change mine since following the blood group diet if Dr D'adamo.

REPLY

Was this helpful? 1

Margo,
I agree with Sandy (comment 10). I developed migraines after having an anaphylactic reaction to an antibiotic that caused meningitis. I went to at least 5 different neurologists and had multiple tests with zero results. They tried me on multiple migraine meds most of which didn’t work and if they did I could only take like once or twice a week. I even tried Botox which did nothing for me personally. It wasn’t till I went to my 4th pain specialist that he finally treated me like a human. For me every single nerve in my body is on fire and some days the nerves in my brain are on fire, that is my migraine. 2 years ago I was on 11 different prescription medications and now I’m on 3. With each new medication caused new issues. I still have migraines and some days I’m in bed all day but it’s not nearly as bad as it use to be. Sucks but more tolerable. When your head hurts that bad and nothing helps it does bring you to very dark thoughts. Please look into a pain Dr. Keep looking until you find someone who will help him. They are out there. From my experience neurologists are a damn joke. I was immediately judged by every single one of them, treated like a drug seeker and my symptoms were talked down to no big deal. Until you have gone through it don’t tell me how I feel. God Bless your son. I am only 37 myself and this has taken away my career and my marriage is practically over. Thank God for my kids because without them I wouldn’t have fought so hard to be where I am today.

REPLY

Was this helpful? 0

As mentioned earlier, find a pain management doctor and a headache specialist. I have never been very impressed by most neurologists ....Pain management specialist usually have a headache specialist that they can refer him to. Good luck!

REPLY

Was this helpful? 0

Well you got a lot of good responses, hope something on here helps you. I'm also a migraine sufferer so I feel your pain. I only have a few things to add. One day with the 4th worst migraine ever, I was ready to blow my eye socket out. My girlfriend was smoking a joint, I asked to try it a few times and WALL-LA 20min later my migraine was GONE!!! So please look into cannabis or any of its other manufactured products. By the way that was the first time I smoked in 12yrs so.. And the one thing I finally found that works for me is Sumatripitan 100mg tablets, they are a godsend!! I really hope you find something to help. And if Butalbital with codeine is the only thing to help him, it is a crime not to have any doctor willing to write that for him, and yes I would try pain management. Please keep us informed on the outcome.

REPLY

Was this helpful? 0

Re: LAW (# 8)

Are you also taking the Amovig? I have been on it for 2 months and I am completely migraine free. But I have been down this road before with the botox. It worked for a long time then suddenly stopped being effective. So I'm looking for someone who has been on Amovig longer and can tell me if it is still helping months and months later. Thanks in advance.
Amy

REPLY

Was this helpful? 0

Research a doctor at University of Maryland in Baltimore. Best hospital and doctors!

REPLY

Was this helpful? 0

Re: Curious80 (# 15)

I took my first shots this week, so I cannot tell you anything as yet. I am to remain on my meds ( Lyrica and Effexor) for some time...until we know how the Amovig works for me. I really hope it does because the meds I take have some brain cell killing properties!

REPLY

Was this helpful? 0

I take firocet without the codine and it works for me. Super grateful.
If he needs the codine you need to find a pain management clinic because nobody else wants to prescribe these days.
Botox works great for my headaches but it’s expensive.

REPLY

Was this helpful? 0

Re: LAW (# 17)

I am still on lyrica but it is not for my migraines. I actually didn't know doctors were using it for that and that's interesting to me. I truly pray the amovig works as well for you as it has for me. 2 months and not a single migraine. It has been life changing so far. I was having so many migraines I couldn't live much at all. The migraine pain used to be secondary to my pancreatic pain, but after a while I could handle anything but the pounding searing pain inside my head. I couldn't take any preventative medicines and was maxing out on triptans. Thank goodness amovig came along when it did. Good luck on your amovig journey and I really hope it works out for you.

REPLY

Was this helpful? 0

Hi, I've been having migraines everyday of the week. the most severe migraines generally occur 2x a week or so. My n...

I have severe migraines I am currently taking 100 mcg of Duragesic patch changed every 48 hours and 5 10mg Vicodin. I ha...

6 REPLIES

I have been trying for something to fix my migraines for years. After trying preventatives my neurologist went to narcot...

10 REPLIES

I have Fibromyalgia and Chronic migraines, as well as sleep problems, night terrors, and REALLY bad eye sight Lol. Not s...

1 REPLY

Anjovy kills my migranes almost for. Month. As expected, thr insurance won’t cover it. It’s about 900 bucks....

3 REPLIES

Hey y'all, I was on fentanyl 100 for 15 yrs, it worked or at least helped me lead a normal life. I have secondary pr...

1 REPLY

Need help finding a doctor that will prescibe soma for my chronic migrains lower back painand was born with herniated di...

2 REPLIES

Are there any doctors in east texas that aren't afraid to prescribe Stadol NS 3-4 bottles per month for Migraine res...

2 REPLIES

I am going for my fourth Benlysta treatment tomorrow and although I've noticed huge differences in my mobility and j...

10 REPLIES

I was taking Epidrin for my migraines and it helped. It was taken off the market along with Midrin. Is there anywhere I ...

9 REPLIES