First time poster, and I apologize for the length of this. I've been reading various discussions on and off in this forum (and many others) and would like some advice on how to deal with my increasingly desperate situation.
I've had migraines since I was 4 years old (now 33) and they've grown in frequency over the years. They reached episodic status by the time I was in high school and really blew up when I started college.
During that period, I learned about biofeedback and lifestyle / behavioral modification, which helped lessen the frequency. A combination of Fioricet (w/ Codeine) and Midrin was my magic non-frequent combination to help me maintain a professional life in I.T. Flowers, some scents, chemicals and weather changes were always a problem, but I was able to cope.
However, in the past 10 months, my attacks have reached chronic status, a process that took about 2 years to really peak. It began with a complete intolerance for any form of alcohol. Then, eating raw onions would trigger a near immediate 8-10/10 migraine that would last for days.
Soon after, even the smell of raw onions would trigger the same reaction. Many flowers, most fragrances, and chemical smells now trigger the same type of attacks, and the multi-day migraines have now taken over my life.
Living in AZ, the weather changes during the summer are hellish. My situation is now desperate and my neurologist has recommended an inpatient stay at MHNI or a similar facility.
When this all really began to reach the chronic status, I was in great shape, eating very healthy and trigger-food-free (after the onion incident) and the bottom fell out. No injuries or anything like that to coincide. I was taking my Fioricet / Midrin very sparingly since I was familiar with the problems of MOH / rebound.
I have been on a full vitamin supplement regimen for months (B2, B12, Magnesium, CoQ10, daily multivitamins), avoided trigger foods (nearly ALL of them, even the ones that have never been a problem).
I have tried several different triptans (very bad reaction), Botox injections (expensive, unpleasant, and useless), Verapamil (awful), Inderal, Nortriptyline, and several other preventatives that are escaping my memory at the moment. I am now having to take Klonopin to help me sleep, which is marginally successful. In addition, I've had to add hydrocodone to my list of meds as well.
With the frequency and severity of pain, I know that probably 1/4 to 1/3 of my lower-intensity attacks are from rebound, but when the pain is so frequent, so severe, and lasts for days at a time, I needed the additional firepower just to cope. I'd go stronger on the narcotics, but I know that is usually a losing battle that only gets escalated in potency / dependence.
I've had CT scans, MRI, MRA, MRV: All came back clear. The scent / chemical triggers are so consistent that I only leave the house for doctor appointments these days and the anxiety / depression is really starting to take hold.
My quandary: From what I've read (after a LOT of digging), it sounds like MHNI and other similar clinics don't adequately provide relief for my specific set of triggers to justify the thousands of dollars that I don't have. I've been practicing the biofeedback, relaxation, and other alternative therapies they espouse for years. There's no relaxing your way out of sudden onset attacks like I have.
The symptoms I have (and have had for the past 29 years, with increasing frequency) do not seem to coincide with conditions that respond to nerve blocks or similar therapies. I've seen enough negative feedback on the Omega Procedure to dissuade me from pursuing that.
Does anyone with similar triggers / issues have any advice on a specialist or clinic that might be able to help me? I'd rather not roll the dice on MHNI at this point, but I'm growing increasingly desperate since I have almost no quality of life.
Thank you very much to those who trudge through this wall of text.
That's great if his attacks have dropped down so dramatically regardless of the hows and whys that always crop up in your mind. I personally haven't tried the muffins (I'm at chronic migraine status), but the anti-inflammatory effect could definitely be at play with him.
Similar vitamin cocktails can produce the same beneficial relief for a lot of people, and food can be a HUGE factor. There are so many variables that set us off that it can be hard to track without very detailed food journals, along with the time the migraine began, the day's weather (humidity, barometric pressure, temp, etc), how much sleep he's getting, and other environmental / chemical or food triggers.
In my own history, the slow-me-downs were often stress or tension related, along with sleep, regular eating, and so on. Regimented lifestyle schedules along with some relaxation and even biofeedback can greatly reduce a lot of those.
It's hard to really speculate, but any positive change is always welcome. How long has he been having migraines? If he's seeing relief, I would personally keep pounding the muffins down, or find some other Omega-3 supplements that would fill the same role and see if there's a change, but then you get into "if it ain't broke, don't fix it" territory.
Isolating and attacking the migraine monster can be a long-term effort for a lot of people, and any sufferer would give him a big high-five for finding relief on even a marginal level. It's hard to set aside the skepticism for a lot of the wonder cures / products out there, but you never know until you try it.View Thread
Citrus is awful for a lot of people. I'm trying to recall "Heal Your Headache's" restriction diet since it addresses a lot of the common (and some very uncommon) triggers. Now that I've gotten rid of the rebound headaches, I'll be going on a much more restrictive diet myself, probably taking it further than that particular book recommends.
One of my big problems over the years is identifying a food trigger since it can take up to 48 hours to hit you and by that point you may have been triggered by dozens of other things as well. So unless you either keep an incredibly detailed journal (which I got disgusted with keeping up long ago) or restrict your diet dramatically and build back up after a 4 month detox, it can be tough.
I know the ones that will hit me immediately, but I know there are others that will basically sneak in under the radar.
Is your wheat trigger a gluten thing? Most of the things you have listed are pure hell for a lot of people, but I'm also curious to see what sets people off. And it gets to the point where you almost don't want to find any other things that blow you up.View Thread
I've always had an issue with extreme exertion as a trigger, which can be a humiliating thing to have to explain.
Honestly, my policy was always to try to get any exercise or outdoor activities (farm maintenance as a very painful example) done before things warm up. If you're in an indoor class, I would recommend trying a more low-impact routine for a short amount of time and try to determine if specific motions are setting it off and then adjust your intensity / routine as needed. There might be some tweaking involved, but it's well worth it to dodge the migraine onset.
In addition, if you haven't already, you might want to consult a neurologist or do some digging on the internet for nutritional / vitamin supplements. The magic cocktail of CoQ10, Magnesium, Riboflavin and a handful of others might be enough to give you some breathing room.
Hats off to you, though. If you're pushing yourself and not getting the beginnings of aura until the cool down, you're in a good starting place. It doesn't feel like that I know, but you're one step ahead of the pack for the exertion-headache crowd.
While some fitness sites don't really have forums specific to these types of issues, you might want to lurk around some of them and give a quick intro to see if you can find a non-troll that will answer your questions.View Thread
When I get those it's often an allergy or sinusitis-trigger episode. Weather changes (even slight) will do it, and as I've gotten older, those changes bring on more severe attacks.
I wouldn't be too alarmed, but since this was from 4 days ago, if you are still having those effects you should definitely see someone to rule out a sinus infection, etc. I'm not a doctor at all, but I'd be paranoid as hell about fully cleaning / sterilizing out the Neti-Pot with every use, but that's just me.
How did the balloon procedure work thus far? I've known folks with mixed results and am always curious to see how well it's helped others.View Thread
It could be a c-spine issue, or some type of impinged nerve. My migraines take on a radically different form, but with the uniformity of the attacks' location and duration, that gives the really good chronic pain docs some good info to work with.
What sort of work-ups has she had? (MRIs, lumbar punctures, etc.) There are some high-powered pain clinics in the country, and a lot of the times the local resources (doctors who don't see more exotic cases) just are not equipped to treat some of the trickier patients among us.
The hardest thing is getting the skeptical look from a doctor just because you have a problem they simply haven't dealt with. Near-Persistent Daily Headache and Chronic Migraine in general is hard to treat for a lot of doctors. I'm sure she's been asked a million times if there was any head or neck trauma or if she's tried nerve blocks, etc.
There's a whole smorgasbord of things the doctors will slowly check off the list if you find a good one.View Thread
I really appreciate the time you took with your response. I was actually inpatient in the hospital (and traveling back and forth from MHNI) so I didn't get a chance to respond.
Some of my daily attacks greatly diminished in duration as soon as I got to the cooler Michigan weather, which was odd since it would normally work in reverse for someone coming from AZ. Since I just returned home, the only worry is that the environment will rubber-band me back to my previous intractable status, but only time will tell.
As far as soy goes, that's a hard trigger to dodge, and since reading your post, I've been dwelling on how tough that must be for you to deal with. As you mentioned, that stuff is literally in everything these days. Keep Calm, stay indoors and have your sunglasses nearby.
I'll have a better feel for the effectiveness of the MHNI treatment, but I can say that they are a very thoughtful, VERY knowledgeable staff from the top down. They've seen a lot of crazy stuff. Unfortunately, they don't have magic wands for everyone.
While we did bicker about the efficacy of some abortives, the plain truth is that you simply have to ride the pain out as much as you can as you go from one preventive to the next without falling back into the narcotics trap. And THAT is a feat much easier said than done, and a non-sufferer really cannot understand the enormity of that problem.
While MANY respond almost immediately to the medications and lifestyle changes I had made years ago, there are some wildcard patients out there.
Their detox program is great if you're stuck in the narcotics route, and I'm just waiting to see if my more unusual diagnoses and treatment options will start having a greater impact in a month or two.
I'd say stick to the supplements (been going on mine since April), and definitely get some info on biofeedback. It's great for some headaches and calming your body down, especially if you get in a mass panic to get away from a particular trigger. It helped me for years with tension headaches, and some caused by sleep deprivation or irregular meals. It's a good tool to have in your kit regardless.
As you know, the scent trigger issue can seem like it's impossible to deal with. People start asking if you're agoraphobic, etc. and then you have to play the "Here's why I can't leave my house" game, which is never fun.
I did leave MHNI with some new preventatives that I'm feeling positive about, and I do have an awesome local neurologist. While it's been a rough ride since the normal tricks haven't worked for me, we just have to keep slogging through.
The more info you can give your neurologist, the better. With triptans in particular (along with Migranal, DHE-45 and other ergot based drugs), be very upfront about what the side effects are in case you have some sort of unusual vaso-reaction other than the plain-jane vaso-dilation that most migraineurs get.
I'm not a doctor by any stretch of the imagination, but I've been on this road a long time, and my well documented and vividly described side effects radically changed the course of treatment given by the staff in Michigan.
Thank you again for sharing. I know how awful it is to be caged up in your house because you know the migraine monster is lurking outside.View Thread
After my recent inpatient stay for chronic migraine, I had a spinal headache that began slowly the day after the lumbar puncture. The day after that, I could barely stand up from the spinal headache. For me personally, the blood patch was a lifesaver (albeit temporarily unpleasant) that resolved the spinal headache within a couple of minutes. It was the bed-ridden waiting for the patch that was especially torturous.
I was told that some folks do require multiple blood patches. Most likely due to the amount of blood used for the patch and other individualized factors within your own spinal canal.
I would definitely recommend talking to your neurologist or the hospital staff (if you haven't followed up again already) for further recommendations since they're the ones who will inevitably be dealing with it. Spinal headaches are awful, and your mileage will definitely vary with how your body responds to the patches. Wish I had more info for you, but I can definitely empathize with the pain.View Thread
The extremity pain could be part of the "migraine hangover," depending on how acute the pain is. As far as sores go, I've had migraines a long time and haven't run into that. I'd report that to your primary physician.
I just created this account yesterday, and noticed your post today. I know it's been a week since your post, but did you try getting to an urgent care clinic for a Toradol shot? Lots of people swear by that for breaking up a severe episode.View Thread