For those with migraines and frequent headaches

[carolina]

I have severe migrane, and nothing helps, really, aside from the treatment I am doing now, which has been a blessing! I take medicine every day - Topamax (Topiramate, 75mg in the am, and 75mg in the pm). This has reduced dramatically my episodes - like 90%. The remaining 10% is sooooo much easier to treat now! Maxalt 10 for me is the best medicine... When that doesn't work, and the migraine hangs for days on no end, I go to the hospital and get an injection of an anti-inflammatory - that works like a charm.
Narcs never worked for me... Since I started on Topamax I haven't had one bad episode yet - just mild ones... It has been wonderful! But the medicine itself has side effects... The worst of all is that it makes you "stupid" for a couple of months

But... Since I was unemployed... Oh well! Well, not completely stupid... it gives you the "blanks" you forget words, that kind of stuff... Weird. But you get over it, and normal again

It is wonderful to be pain-free though

 

[mismaris777]

Ok... I know this is a far stretch here, but I feel that maybe this might be able to at least help one or two people out.

I am inpatient at the Diamond Headache Clinic in downtown Chicago. It is a world-famous program, especially dealing with migraines. They do NOT believe in narcotics- they use other things, like muscle relaxers, anti-anxiety meds, blood pressure meds, parkinson's meds, benadryl, just stuff like that. They have done TONS of research.

There are people from all over the world that come to be in this program. Right now for instance there are people from Georgia, and last week there was someone from Calgary, Canada. They have even had people from Hawaii come to be here lol. So, if you have the means to do this, I definitely recommend it. I promise you that your headaches will improve, not that they will go away but they will improve.

 

[mews2much]

I get severe migraines and was so messed up from one in august I had slurred speech and had to go to the er.
i have to see a neuro about them soon.

 

[natalie_ca]

Originally Posted by LDG

How many suffer from migraines or frequent/chronic headaches?

If your migraines lasted from 45 minutes to three hours AND felt like a spike was ripping the top of your head off and your brain was going to explode - but you got these things a minimum of 5 and up to 10 times a day, every day, for going on three years now... and in between the migraines you always had a loud attention-grabbing headache, and you'd tried over 50 medications and therapies, several hospitalizations and a surgical procedure to help reduce or prevent them and nothing has helped - AND you are lucky to get two hours of sleep a night, rarely all at once, and your only relief was seriously heavy narcotics... what would you do?

If my headaches were that debilitating, I would pursue Gamma Knife Radiation Therapy. The risk of a little facial paralysis (if any at all) would be way worth the risk to me so that I could carry on living my life pain free.

 

[kluchetta]

I get a migraine about once a month (hormones). I can't believe people have them every day; I don't know how they cope. I usually can take benedryl and some Vicodin and at least sleep them off. They always come around 2 or 3 in the morning. In December I had three, and that stunk! I tried that time to take some Excedrin Migraine type medication, and the headache wasn't so bad but i was horribly nauseous. Like morning sickness nausea.

Laurie, I am another that thinks about you and Gary all the time. I'm so sorry you have to go through this.

 

[ldg]

Originally Posted by strange_wings

I would try the neurostimulator route - but I see he's already done that. Try more trial/research treatments?

Being willing to be a research subject for new treatments could offset costs.

I haven't talked much about this publicly, so you would have no way to know, but I'm the one that through my research properly diagnosed Gary. He'd seen four neuros already as these started with surprising frequency in 1999. He went chronic in 2006 and all-the-time pain in 2007. I know more about the research, treatments (including the experiments with ketamine comas in Poland), and trials (I got Gary enrolled in the former Harvard study of psychedlic mushrooms and LSD as a treatment for this condition) than most neurologists. I probably spend at least three hours a week making sure I haven't missed something new - and I was absent from TCS for at least a year, because all of my online time was dedicated to learning about this condition and how to treat it.

Originally Posted by strange_wings

As for the other questions, I don't get migraines very often anymore. But when I had them they never lasted 3 hours, that would have been nice. Typically it was 10-24 hours with follow up migraines for days after. I didn't have health insurance when I had them chronically, so I don't know what would have stopped them. But the last migraine I had didn't respond to a narcotic painkiller (no surprise).

Gary is very rare in that his attacks are at least dulled by them, and they are not causing rebounds.

Originally Posted by Natalie_ca

If my headaches were that debilitating, I would pursue Gamma Knife Radiation Therapy. The risk of a little facial paralysis (if any at all) would be way worth the risk to me so that I could carry on living my life pain free.

Most neuros and headache centers no longer seriously consider this as a potential treatment as it has been shown to work approximately 17% of the time. But hoping he'd be one of the 17% is certainly worth trying before calling it quits.

Originally Posted by mismaris777

Ok... I know this is a far stretch here, but I feel that maybe this might be able to at least help one or two people out.

I am inpatient at the Diamond Headache Clinic in downtown Chicago. It is a world-famous program, especially dealing with migraines. They do NOT believe in narcotics- they use other things, like muscle relaxers, anti-anxiety meds, blood pressure meds, parkinson's meds, benadryl, just stuff like that. They have done TONS of research.

There are people from all over the world that come to be in this program. Right now for instance there are people from Georgia, and last week there was someone from Calgary, Canada. They have even had people from Hawaii come to be here lol. So, if you have the means to do this, I definitely recommend it. I promise you that your headaches will improve, not that they will go away but they will improve.

Yup, it's the center I was referring to in Chicago. My understanding from speaking to people who have been treated there with the same condition Gary has is that the only thing they do differently that wasn't done at Jefferson (Philly) or Montefiore (NY, where he's currently treated) or with any of his other neuros, is histamine desensitization, which, of course, is worth trying. He's done the muscle relaxers, the anti-anxiety meds, the blood pressure meds (calcium channel blockers), the anti-epileptic meds (parkinson's), benadryl, and everything else I listed earlier - and more.

I don't want to nit-pick, but "promise" is a huge word, particularly when it comes to this situation.

Given he's tried every class of drug there is, both legal and illegal for treatment of this condition, tried the electronic implants (close to a last resort), and been treated at two of the preeminent headache centers in the country and been seen by the three leading experts in his particular field of headache, and his current neuro studied under THE world expert and his current pain management Doctor flew out to a conference two months ago in order to meet with that same expert to consult specifically on Gary's case (he was already familiar with it because we've been in touch via e-mail), I'm confident there isn't anyone anywhere willing to promise anything.

Certainly there are still things to try. And some that should be tried again. The scary thing is that the further down the list we go, and when trying something for the third or fourth time, it just means we're getting closer and closer to having nowhere else to go or anything else to try.

 

[strange_wings]

Originally Posted by LDG

I haven't talked much about this publicly, so you would have no way to know, but I'm the one that through my research properly diagnosed Gary.

I thought you had mentioned that before? Or maybe it just came across that way.

Keep looking, maybe someone is trying something different. That's all you can really do unless the two of you have given up.

..It's not hard to give up, though. Sometimes you (those that have something odd wrong with them) get the feeling that you're broken and there's just no fixing it. It doesn't help when you have doctors pretty much tell you the same thing.

 

[ldg]

Sorry, I just kind of took offense at the "if you're willing to research..." comment. I did and do a lot of it, and I definitely keep looking, all the time. We haven't given up yet - it's just been a particularly difficult couple of weeks. It's just so...... endless.

...and sometimes I feel that it's just so selfish of me to keep asking him to keep going.

 

[spudsmom]

Hugs for you and Gary. I swear if I was granted a magic wand, the first person I would wave it over was Gary, to get rid of his headaches, and I don't even know him. It's just so unfair to have to deal with that everyday. You are both in my prayers. I know that's not much comfort to Gary in his pain, but I know I'm not the only one in hoping and praying that it will stop for him. Not so good with words, but Gary's plight really touches me. You are an awesome spouse to do all that you have done to help him and support him. You need to know that. You are a good lady, Laurie!

 

[ldg]

He's an amazing man.

 

[strange_wings]

Originally Posted by LDG

Sorry, I just kind of took offense at the "if you're willing to research..." comment.

You even quoted me, that's not what I said. I said research subject, as in guinea pig for someone trying something out.

 

[ldg]

Oh, sorry, my misunderstanding.

 

[strange_wings]

Originally Posted by LDG

Oh, sorry, my misunderstanding.

No worries. Might be time to take a breather and relax the eyes soon. (running off to go watch tv myself - so I'm taking my own advice here.

)

 

[jillian]

Honestly, Laurie, I know it sounds a little out there but if I were Gary I would:

Switch to an all raw-food diet (Check out the book 12 Steps to Raw Foods).
Check for food allergies (gluten, dairy, soy, etc)
Get thee to a chiropractor
Drink more water than I thought possible in any given day

I hope Gary can find some relief. Healing thoughts to both of you.

 

[sk_pacer]

I get the dreaded chinook headaches - a long lasting (up to 72 HOURS or more) barometric pressure induced migraine; also get them for other reasons but those are nothing comaratively. I have just come out of a two week period of almost non-stop migraine - 4 separate long headaches, the last being the worst. I just use otc stuff because the docs here seem to think demerol is the cure (doesn't work on me). I have found that Anacin washed down with Eno works best, Alka Seltzer second and plain soda water in a pinch. I also get so I cannot eat 'real' food and subsist on Ichiban noodles with the broth very strong and Chicken-in-a-Mug, also very strong - get horrible salt cravings and keep a supply of noodles and assorted salty snacks around. Caffeine also helps for some reason, and caffeine is also a component of many otc nigraine preparations.

 

[ut0pia]

Originally Posted by Jillian

Honestly, Laurie, I know it sounds a little out there but if I were Gary I would:

Switch to an all raw-food diet (Check out the book 12 Steps to Raw Foods).
Check for food allergies (gluten, dairy, soy, etc)
Get thee to a chiropractor
Drink more water than I thought possible in any given day

I hope Gary can find some relief. Healing thoughts to both of you.

I was going to say the same thing about raw food diet, but I was afraid of being called crazy

There is so much toxicity in our food...for some people the negative effects of all this are far, far worse than for others..
If you look up raw foodism you will find a lot of stories that are hard to believe, people who cured so many of their chronic pain issues, depression, and those who suffer severe chronic diseases have found a way to manage their condition and live with it much better. Shazzie is someone you may want to look up, she is an author of many books on raw food and blogger, but she is a little radical in a sense that she is really determined to force society to accept this and make it mainstream, if you take that out she is a great inspiration. Although I know making such a tremendous change in your eating is not something you just randomly try out, and I am not saying that you should, all I'm saying is look into it ...

 

[strange_wings]

Originally Posted by sk_pacer

Caffeine also helps for some reason, and caffeine is also a component of many otc nigraine preparations.

The reason is that many migraines and headaches are thought to be vascular in nature or have a vascular component to the process. Dilation being part of what causes the pain. Caffeine is a vasoconstrictor.

But caffeine is useless if the headaches have another cause or the person can't have it for another reason (say the headaches were caused by high blood pressure, for example).


I can't say caffeine or my midodrine has ever touched a migraine. Caffeine doesn't really help the chronic headaches, either, though the midodrine can lessen the low blood pressure caused ones. I'm SOL for the tension headaches (early DDD and other neck issues), narcs don't work, muscle relaxers strong enough to do anything send me crashing to the floor, and vasoconstrictors do nothing for muscle pain.

It's that type combination of things that causes problems for people with hard to treat pain issues.

Multiple issues making things more complex.

 

[ldg]

Caffeine definitely used to work as an abortive. He hated energy drinks so would drink espresso. Before he was in the all-the-time pain phase, in late 2006, we were out to dinner with friends at an Italian restaurant. He had 6 quadruple espressos - the restaurant gave us a break on the bill because the charge for the coffee was almost more than the dinner. The frequent use of masses amounts of caffeine ruined his GI system (which already wasn't working very well).

Gary isn't interested in an all raw food diet, we've discussed it. We did go so far as to eat only fruit for two months. Maybe it wasn't enough time, but there was no improvement in his pain. We have eliminated food allergies (in fact, all allergies - he's not allergic to anything), and we did try gluten free for a time, lactose free for a time, no sugar, and we still avoid msg. I do believe that by doing the food isolation (eating one food at a time for months) we eliminated food as triggers.

The most powerful vasoconstrictor there is is oxygen. Gary went through one "M" tank a week and we wouldn't go anywhere without at least one "E" tank in the car. Unfortunately, even oxygen no longer works as an abortive.

I've researched the theories on this. The only thing we could come up with is blood pH levels that may interfere with effectiveness. It was also suggested we look into blood diseases that may affect oxygen delivery. Those have been eliminated. We focused on alkalinizing foods and supplements, and ensuring he has a high pH hasn't made oxygen work again. He has it delivered "on demand," which means up to 160 liters per minute. The idea is to "hyperventilate" on oxygen, and we have experimented with so many different methods of breathing/delivery... still not working.

He's had high resolution imaging done on the artery and vascular structure in his head/neck.

We also have tried numerous herbal products, from Kudzu (which initially helped reduce the frequency and intensity of attacks) to rhodiola - and growing and using magic mushrooms. In fact, psilocybin is the ONLY thing that actually did provide him with some pain free time (late 2006). But when the psilocybin stopped working, the oxygen stopped working. We still have the 02 and every once in a while he gives it another try...

 

[snake_lady]

Laurie,

Of course you know my thoughts....and I will voice some here too.... I haven't read through the entire thread either, but will give my opinion on the starting post.

#1: I would go with the heavy narcotics IF they give enough relief to have some sort of QOL.

#2: Knowing that you've exhausted ALL medical options, and when/if the narcotics no longer work, and there's no QOL, then yes I would seriously talk to my partner and evaluate whether life is worth living. It is the same as those of us who "want the plug pulled" if we're incapacitated severely.

That said, I'm going to come back and read what others have said, but I'm pretty confident that the word suicide brings alarm to most people. But as a person who lives in chronic pain, and has times similiar to G's ( days with no break ) I can completely empathasize. Tho with me, I do get a break...I have days where my pain is a 2 or a 3..... vs what G goes thru with no break.

 

[abbycats]

Originally Posted by LDG

How many suffer from migraines or frequent/chronic headaches?

If your migraines lasted from 45 minutes to three hours AND felt like a spike was ripping the top of your head off and your brain was going to explode - but you got these things a minimum of 5 and up to 10 times a day, every day, for going on three years now... and in between the migraines you always had a loud attention-grabbing headache, and you'd tried over 50 medications and therapies, several hospitalizations and a surgical procedure to help reduce or prevent them and nothing has helped - AND you are lucky to get two hours of sleep a night, rarely all at once, and your only relief was seriously heavy narcotics... what would you do?

Do you live with the pain without the narcotics?

Do you take the narcotics?

Do you seriously consider ending your life despite having wonderful people, family and love in your life because the quality of your life and your ability to do things is so inadequate?

I am so sorry Gary is going through so much pain. I can't imagine having non stop migraine headaches where there is no relief. In answering your question about what would I do? Honestly I would take the heavy Narcotics. You are both in my Prayers

I hope and pray somebody finds a cure for him. Has Gary tried THC or medicinal pot?. They say that helps chronic pain too. You and Gary are very special people and my thoughts and prayers are with you always.