For those with migraines and frequent headaches

[ldg]

Lee, because we get "googled" for biz reasons and a while back someone on a stock board turned up one of my threads here, I want to put this out there publicly (though I will PM you to compare notes). The reference to having tried just about everything, legal or illegal, is not in reference to pain meds.

It was when his 7th neuro was "out of bullets" that he referred him to pain management, and he has a fabulous PM Doctor. Gary is on the cadillac of pain meds, dilaudid - somewhere between 5 - 8x stronger than morphine. ...Though interesting you mention it, he was prescribed tincture of opium for his GI issues back in 2005/2006. His PM Doc runs several surgery centers, and he did the electronic stimulator implants:



No, I was referring specifically to psilocybin/LSD which has been shown to be very effective in the "treatment" of cluster headaches: http://www.ncbi.nlm.nih.gov/pubmed/16801660

I know psilocybin mushrooms ("magic mushrooms") were legal in Amsterdam - I'm not sure that's still the case. Either way, it's moot, because Gary can't fly. They don't pressurize the cabins enough.

However, the sale of psilocybin spores is legal in the U.S. if used for research. So traveling to Amsterdam isn't necessary, mushrooms are actually quite easy to grow.

They are the ONLY thing that has provided him any measure of relief. But they stopped working - or we'd still be growing them, because the doses required are sub-hallucinogenic. ...not that you want to take them just before a business meeting, but the relief provided lasts for days and weeks - some for months.

Sadly, clusters don't usually even respond to narcotics, and if they do, for many they cause rebound attacks. But he's detoxed numerous times and we have kept (as you can see above) an extremely detailed "headache" journal. It's apparent the narcotics actually do help his pain and do not cause rebounds, so Gary is also pretty unusual in that way - and I am VERY thankful that he's got at least that.

 

[cococat]

I haven't checked out this long thread - seems many are suffering from pain by the length of this thread.

I did pop in to vote: I don't get migraines or rarely get headaches

 

[lawguy]

Something some of you guys might want to consider asking your doctor about. I saw a neurologist who specializes in headaches. He actually trained with my father in neurology. He's fairly involved from what I can tell, in the research of headaches, and is on faculty at UofMiami Med School.

He spent 3 hours examining me and taking my history. He says I fit the profile for a genetic mutation that many migraine sufferers have, but it is severely under-diagnosed due to it being more on the cutting edge of research in that field of medicine. He says I fit the profile for having the Methylene-tetrahydrofolate reductase (MTHFR) genetic mutation. I won't pretend to fully understand everything that he explained to me about how this led to me having migraines, but it had something to do with my Crohn's disease, and the surgery I had for it putting it over the top. Apparently, it explains a lot of medical issues I've had over the years. His neurological exam revealed neurological weakness I didn't even know I have. Furthermore, I learned that along with my memory being affected in the last few months (I get episodes of complete amnesia), whatever is going on has caused me to be unable to walk a straight line like you would in a sobriety test. I could just barely go forward without falling over, and I couldn't go backwards more than one step before I lost my balance entirely. I would fail a field sobriety test right now even though I haven't had any alcohol in weeks.

We're going to do the genetic test for it and see if this is what's wrong with me. I only bring it up because he told me that ever since he realized that this mutation is far more common than thought before, he's noticed that many of the patients he sees have it and he's had supposedly very good results treating it once it's diagnosed.

So, if you're like me and not getting any results from the standard migraine and headache meds like tryptans, etc. maybe it's worth asking your doc if there's any chance you have this genetic condition. I'm just throwing it out there. My father had never heard of this before, but he's since researched it and he says that it's possible that this is the cause of my problems.

 

[strange_wings]

^Interesting that you mention that. A person on a dysautonomia forum that I used to frequent is working with some researchers (playing guinea pig) because of serious issues with her methylation cycle - including what you've mentioned. She had to be treated for hyperhomocysteinemia. I've mentioned it to others on here that have chronic pain and odd health issues to get homocysteine levels checked since it can tip off that other things are seriously wrong - and while it's an uncommonly order blood test, it's simple.

 

[lawguy]

I went to my father's medical office today to have his insurance authorization specialist check to see if I needed prior authorization for the DNA blood test. She looked into it and says that even though it's a rarely performed test, it's fully covered by my insurance. There are a bunch of other uncommon tests we're doing too as I'm going to be getting all of the tests ordered by 5 doctors as we try to figure out what underlying conditions led to the perfect storm that caused me to have to withdraw from law school for the year. While doctors in the past had dismissed the high number of ailments that would pop up spontaneously as just coincidence and bad luck, we're starting to realize that there is probably a central mechanism at work here that needs to be found asap. Of particular concern, this genetic mutation puts people at much greater risk for heart attack or stroke. The doctor was concerned because he felt that if I do have this, it may go back as far as my mother's father, who died in his 30's. I turn 27 in 3 weeks. Despite this, for once in my life I feel hopeful that we might be able to fix me after 13 years of non-stop ailments one after another bombarding me and impeding my ability to perform optimally in school. As an economics major, I got a 3.465 GPA in undergrad. I feel like if I had been healthy the whole time, not only could I have graduated on time in 2005 instead of 2007, but I think I could have easily gotten a 3.8 GPA or higher. So, I'm hopeful that if we find this underlying problem and fix it (or come up with a treatment plan), I might be able to finally perform optimally in school.

What depresses me is that having spent a fair amount of time in hospitals over the last 13 years, I know that there are people out there who are far more ill than me. From what I've read in this thread, some of them are on this forum, or are family members of people on this forum. My quality of life over the years could almost be described as being pretty close to "life is not worth living". So what makes me feel horrible is that if this is my quality of life, I feel terrible for those who have it worse than me. I don't know what keeps them going. Obviously this is why places like Dignitas exist. However, I've met some people in the hospital who just have this strong spirit and keep chugging despite going to hell and back. I may have mentioned this before, but I make a lot of friends while hospitalized, I'm sure anybody here who has been hospitalized understands why. Everybody drops their daily facade and realizes that we're all the same in the hospital - suffering. Anyways, a few years ago when I had major surgery, I bumped into this young lady, maybe she was in her late 20's or early 30's during the surgery pre-screening process. She tried to make friendly conversation, but admittedly I was intimidated and nervous around her initially because she was extremely physically attractive (dare I say downright gorgeous?) and I don't know why, but for some reason at that moment I got nervous, that doesn't happen too often. Anyways, I didn't see her again until after surgery. I was in too much pain to be nervous around her anymore. I had bigger problems. I then found out through talking to her that she had been operated on by the same surgeon as me, had Crohn's just like me (what we were both operated on for), and furthermore she had been operated on during the same time slot as me, so she must have been in the room adjacent to me and the doc was going back and forth to do the major stuff while younger doctors (in training) took care of the simpler but more labor intensive stuff like closing us up. Turns out she was a model, that made sense, and while that was my first resection surgery, it was her 4th, and she had almost no bowel left inside. As you can imagine, that's a serious issue, she must be fighting vitamin deficiency and malnourishment constantly. Statistically, amongst Crohn's patients, those who require 1 resection have an 85% chance that they'll require a second. So, I know that's coming one day. However, the chance of needing as many surgeries as her is very rare and her Crohn's must have been an extremely severe case. It's those kinds of cases of Crohns that can be fatal. My father specializes in Crohn's coincidentally (he trained in neurology, but later switched to training in gastroenterology for various reasons) so he and I both knew that her case could end up being fatal ultimately, and I'm sure she knew that too. Despite this horrible amount of suffering she's gone through over the years, I was amazed at how brave she was, she would come into my room to visit me and converse despite the fact that when they've sliced through your abdominal muscle wall like they had to for both of us, walking and moving around is fairly painful. She always had high spirits throughout it all, and seemed to never lose hope. I later met with her sister and brother-in-law, and they told me that she always pushed through, and was always determined to not let her illness get in her way. She had a colostomy (ostomy bag set up) during her surgery because she had a total colectomy (complete removal of the large instestine), whereas I had an ileal bypass resection with subtotal colectomy with an experimental wide anastamosis (not nearly as massive internally as her surgery). I remember one day she told me that now that she has an ostomy bag, her new goal was to be the sexiest woman alive with an ostomy bag. I know it sounds silly, and I could go on and on, but I will never forget her. I unfortunately lost her contact information, so I haven't kept in touch with her, but remembering her bravery and determination to keep going is a constant inspiration to me. I even mentioned her in my personal statement for my law school application. She inspired me to keep going and I probably wouldn't have gone the distance to get into a top ranked law school if it wasn't for her inspiration. The biggest thing that impressed me about her though, was that she always had a smile. Not a faked smile, but a real smile. She was the real deal. Maybe one of the bravest people I ever met. I think her name was Karen. I remember she was from Toledo, OH.

Anyways, I'm rambling but you get the idea. I feel awful for people who suffer more than me, and there are plenty of them, probably even right her on this forum. However, I'm hopeful that this doctor's thinking outside of the box and basing his theory on his own 20+ years of research and stuff on the cutting edge of neurology and medicine will yield results. I find that the way many doctors are isn't very helpful to finding a solution. It seems to me (and maybe I've just had bad luck with doctors), that many doctors:

A) Can't wait to get you out of their office and bill your insurance or you.
B) Don't really care about you or how much you might be suffering.
C) Are more interested in minimizing legal liability than almost anything else.
D) Would love to get you scanned in the MRI Diagnostic Center down the street which by sheer "coincidence" - they own.
E) Go the easy route because it means less work for them, such as trying to avoid prescribing meds that are more effective but would require them to take a few minutes to get authorized through insurance, or going the safe route which involves avoiding possibly necessary tests and/or treatment because of possible risk (the latter is partially and perhaps largely the fault of attorneys).

Two examples pop into my mind. A doctor in Minneapolis wanted to treat my recently developed B12 deficiency with standard B12 pills/vitamins. The problem is that due to my surgical resection, I'm missing most of the portion of my bowel that absorbs B12. The only way to get a B12 shot at his office would have involved missing school, but there's no need for that ever since the B12 nasal spray has been out. Unfortunately getting authorization for Nascobal would have required 5 minutes of his time, so he told me to just take B12 pills from the grocery store, which was not only lazy, but hinted that he isn't a very good doctor for somebody who claims to have a sub-specialty in GI. You would think he would realize that I won't absorb the contents of those pills any better than I absorb B12 through food.

The second example involved a friend at a summer camp year ago. I was about 16. His grandmother had Ulcerative Colitis, and her doctor had been treating it with high dose prednisone - every day for over a decade. From what I was told, at no point in time did he think to check her bone density, which as you would expect, due to over a decade of corticosteroids, plumetted leading to steroid induced osteoperosis, a peptic ulcer, and if I remember correctly, Cushing's syndrome. Prednisone is covered by all insurance though. So I guess he had that going for him. I'm not a doctor, so maybe he had a legit reason to put this poor old lady through hell on that drug, but it seems like a bad idea to me. As far as I'm aware, corticosteroids are only to be used short-term and for as short a period of time as possible. They're a nasty class of drugs that I personally hate, but have to take fairly often.

Anyways, I'll leave it there. I've been rambling on this keyboard since 5 AM.

 

[catsknowme]

In case anyone's interested - I have had great success with Amerge! It's expensive - $300 for 9 pills, but it works great. I can't say enough good things about it

It just takes the headache away, right away. It takes the headache away without imparing my functioning abilities or causing drowsiness. And if a person uses Amerge a couple of times a year, their headaches become lighter & tend to go away for great lengths of time. I'd been to neurologists who were ready to say that all they could do was give me pain meds (which my urologist nixed, and I hate the side effects as much as I do the migraine) but a Nurse Practioner gave me a sample of Amerge & voila! My Magic Cure

*Cost prohibitive - Doctors tend to not pay attention to Amerge because of the cost (my pharmacist's opinion) but since I was self-pay for many years, and the costs of migraines interfering with my abiltiy to work were costing more than the Amerge, I continued using it.
* Migraines less frequent & less intense - I'm down to migraines lasting maybe only 1-2 days about 18mos (and then I take 1 Amerge, if I have one on hand, and it's gone within 20 min, without reoccurence for another year).
Also, during headaches that happen right before a storm, I use sinus rinses & decongestants.
* the autoimmune/genetics connection - LawGuy, I think that you have something there

It is confirmed that I have some sort of autoimmune disorder going on, but I don't want to spend $2k on the ANA (?) test, so I checked celiac disease (actually an autoimmune disorder that tends to have co-morbidity with other auto-im disorders) and did the 2 weeks' gluten free diet - did great!!! Then last weekend, ate flour tortillas, crackers & toast - BANG! on came all sorts of my diverticular problems accompanied by a migraine

Of course, the paycheck was late (not till Monday, earliest) so I can't even go get an Rx for Amerge

But anyway, I really like your posts - I do believe you're onto something that will bring much relief and many answers to fellow migraine sufferers

 

[strange_wings]

Lawguy - there's also sublingual b12 that works great for many people. Do you take folic acid, SAMe, choline, and dimethylglycine (DMG), too? Those seem to be some of the pretty common supplements people take whenever there's a methylation cycle problem. If not, look into them - especially the folic acid and the DMG.

Due to my GI issues I need to get recheck for deficiencies soon. I'm sure that adds to my headaches. I have the problem that most supplements in pill form either make me nauseous (and don't stay down) or they pass though and are only halfway digested (because everything passes so fast).

 

[lawguy]

That's interesting that naratriptan (Amerge) has correlated with a long term decrease in severity and frequency of your migraines catsknowme. Have you asked your neurologist if he thinks it is responsible or if perhaps there is some external factor contributing to your long term benefits?

My understanding is that if anything, the use of triptans over time could potentially worsen the severity and frequency of migraines because, similar to narcotics, they change the chemistry and biology in your head responsible for pain. Again, I'm no expert by any stretch of the imagination, so I could be entirely wrong in my understanding there.

I did hear from a nurse the other day that she also uses Amerge and found that it is the only triptan that works for her. So, you're not alone in that.

I'm intrigued by what your pharmacist told you. From what I was told (following the nurse's recommendation, I asked my doc), in general studies have found Amerge to be inferior in efficacy compared to Imitrex and Maxalt. So, if it happens to also be more expensive, the combo is possibly responsible. Then again, I've gotten no relief from the other triptans I've tried so far (Rel-Pax, Maxalt, Zomig). So, maybe I'll give a go anyways.

Strange_Wings - I've been told that the sublingual B12 is no more effective than regular oral pills. There was even a study done in 2003. http://www.ncbi.nlm.nih.gov/pubmed/14616423 I do appreciate the suggestion though. As for folic acid et al, I don't take those yet, after my next bloodwork in a few days, that will all be on the table for consideration. I don't want to take anything other than what I normally take as of the moment though, b/c I don't want it to possibly show something on my bloodwork as normal that otherwise would not be normal, or the other way around.

 

[strange_wings]

Originally Posted by LawGuy

Strange_Wings - I've been told that the sublingual B12 is no more effective than regular oral pills. There was even a study done in 2003. http://www.ncbi.nlm.nih.gov/pubmed/14616423 I do appreciate the suggestion though. As for folic acid et al, I don't take those yet, after my next bloodwork in a few days, that will all be on the table for consideration. I don't want to take anything other than what I normally take as of the moment though, b/c I don't want it to possibly show something on my bloodwork as normal that otherwise would not be normal, or the other way around.

A lot of people who can't absorb B12 through digestion very well/at all, due manage to keep their B12 levels up with them. If I'm not mistaken, I think a member here (SwampWitch?) uses them.

You'd need to do a lot of reading before jumping into any supplements, and discuss it with your doctor(s). If methylenetetrahydrofolate reductase is part of the issues, just B12 alone won't support what isn't being properly converted. Have them check your homocysteine levels, they'll already have you stuck for taking other blood work so another one on the list won't be an issue.

 

[esrandall2000]

Laurie, heaven knows that you and Gary have been to hell and back and exhausted all allopathic remedies. Have you looked at alternative therapies like acupunture, Reiki, or Traditional Chinese Medicine?

www.ReikiInMedicine.org
www.Reiki.org


When Western medicine totally failed me for my medical issues, it forced me to look outside the box where I found alternative tools that have worked.