Treat the trigger or the result?

Okay - here’s me being EXTREMELY frustrated and like the previous post, totally on my pity pot!

I have never had to use meds for migraines and I’ve had them since I was 14 (now 46). In November I just got slammed with MAV and now I’m having chronic daily migraine. Now, the headache pain for me is the least of my problems. It’s the other aura I experience - numbness, tingling, can’t talk, phantom smells, pain in neck, DIZZINESS, insomnia, that really are driving me crazy. Oh, and dont let me forget the horrible anxiety attacks I’m experiencing which I can’t quite determine if they are part of my aura or anxiety because I’m so freaked out about my situation. I often wonder if I’m losing my mind. Thankfully I am on disability for the short term at least to try and get this all under control.

Now, when this started in November, the neuro gave me ami to try. Two weeks on it I was a basket case - literally, ready for the rubber room, so I stopped that quick. Next up was Topamax which is still sitting in my bathroom untouched because I’m scared of it. I made the decision to see a herbalist who was very nice and informative, gave me some remedies to try (one for sudden anxiety, one to squash long term anxiety, one for sleep and one for the actual headache pain if I get it). I’ve been on this stuff for 4 days - I dont really see any difference I know it takes time (he said up to 2 weeks) but I’m very impatient.

So…with anxiety and sleep disturbances always being my triggers, does one treat the triggers with some sort of anti-anxiety med and sleep aid or do I suck it up and start on the Topamax to treat the result? I do have Ativan for emergencies (this morning was one - thought I needed to go into the ER). I hate pills and since I’ve never had to go this far with treatment I’m upset, I’m frustrated, I’m scared, I’m lost, I’m confused and I feel very very alone because no one else in my world seems to understand!!! All doctors seem to want to do is write scripts. The herbalist seems to want to get to the root cause.

HELP!

Hi Tamsha,

I know you feel like no-one understands what you’re going through but trust me, on this forum, we all do. And there’s a lot of people here with a great deal of knowledge of and experience with migraine. So hang in there - you’ll find your answers.

The next thing to keep in mind is that any of the treatment strategies, including diet and lifestyle modifications as well as meds will take some time to kick in. It will also be a gradual process. There is no overnight sensation to this crap unfortunately. So try and be patient.

I think your herbalist, though well intentioned, doesn’t really understand migraine. The ‘root cause’ of your symptoms is your migraine brain. You can’t change that but you can treat the symptoms and avoid the triggers. It’s a personal thing but I would put more stock in what a neurologist knows about brains than a herbalist. Try not to get too hung up on being scared of pills. You’re not scared of the herbs are you? If the herbs have an active molecule and work then they are just as much a drug as a pill. But the herbs probably taste pretty bad.

It sounds like your anxiety is getting the better of you. It might be worthwhile looking into something like CBT or meditation to help you with that long term. Anxiety definitely plays a role in migraine - both as a trigger and a symptom.

No need to apologise for the pity pot - we’ve all spent time there :wink:

Hang in there.

Vic

Hey Tamsha,

I think Vic has given some very good advice in that I’d be trusting a neurologist over a herbalist any day when it comes to understanding the complexities of migraine. Unfortunately, there is no “cause” that a herbalist can treat no matter how much they say so. You’ve had this for 32 years and the overwhelming evidence shows that it’s in your genes – you were born with a migraine brain.

The aim of the story is to RAISE your threshold either by lowering the trigger load or by doing something whereby you grow “taller in the pool” and are no longer drowning in triggers (drugs work in many different ways to achieve this). Whether that is a cup of cinnamon tea, or 50 mg of Topamax doesn’t matter. Whatever works, works, and we want to find something that does the job without hitting us with intolerable side effects. The problem is there’s no evidence for efficacy with things like herbal concoctions or things like vitamnins and minerals or cups of cinnamon tea, although it obviously helps to increase your overall wellness if you’re low on vitamins and minerals.

Vic is absolutely right that there are active molecules in herbal mixes but because they have that natural thing about them, most of us feel as though they are somehow more safe. If you think about it, it’s just not logical. I took St John’s Wort for example thinking it must be easier on me than an SSRI but in fact, it caused me some very bad side effects and getting free of it was worse than coming off Effexor.

I think the above is something most of us have to work through. I held out on taking an SSRI for months in 2003-4 because I thought it was poison. In the end it saved my neck and allowed me to complete my thesis and be at the present level of wellness (not perfect but so much better). I would have been sunk without that med.

So if you’ve done all you can do to modify your lifestyle (the natural stuff I call it) and it doesn’t do the job, then we have to hit the meds. You could try the evidence-based supplements first if you haven’t already: B2, magnesium and Q10.

Scott 8)

Thank you so much for your responses - I feel better knowing other people really DO understand. It just puzzles me as to how I could deal with this all these years very well and then all of a sudden I hit this wall and my life is so disrupted! I can’t make plans day to day because I dont know how I feel, I can’t go to work, my family, although supportive, really has no idea how to deal with this. I feel like I’m fighting a losing battle.

You’re probably right about the herbalist. I just hear SO many conflicting opinions from people, offers of help, suggestions - my head just spins trying to put it all into perspective and come up with a plan that will work for me. It’s such a daunting task. I just want my life back!!

Have any of you had to take time off work like I have to try and get this to some level of normal living?

You sound a lot like me i’ve tried alternative appproaches also and nothing has ever worked. I hate medications and am scared of a lot of them especially antidepressants. i had a bad experience with celexa so i prefer not to deal with an SSRi again but at some point will prob have to try some kind of med for this - just don’t know what yet. something not so scary i hope :slight_smile:

hang in there i feel your pain about not making plans. i’ve been like this for many years and it’s very hard.

i hope you find some help.

chris

— Begin quote from ____

You sound a lot like me i’ve tried alternative appproaches also and nothing has ever worked. I hate medications and am scared of a lot of them especially antidepressants.

— End quote

Chris – I think this is something you should really examine critically. Ask yourself why you were not afraid of taking herbs or whatever other alternative approaches you tried but why you fear other meds. Would you react with fear if a naturopath put together one of those bottles of herbs that you had to take twice a day? The mixtures are full of active ingredients and can come with very uncomfortable side effects just like a pharmaceutical. The difference is the pharmaceutical has been formally tested in clinical trials whereas we don’t know what will happen with a particular herbal mixture. If anything I would be more nervous about taking the herbs.

In the past when I did take a mix of liquified herbs I ended up with reflux for weeks, and 2 years ago when given a Chinese mix to take I was so dizzy from it, it nearly ruined a Christmas holiday up north here. I sat on the beach all day with my head spinning out.

Would you fear a neck adjustment by a chiropractor? Most are probably ok with some neck manipulation but just ask Wino about the things that can go wrong.

Nothing is without risk and I don’t see how there is any distinction between natural/ alternative stuff versus pharmaceuticals. I personally think it’s a myth that there are two camps here. If some treatment has an active ingredient that affects your body in some way it’s medicine whether it’s concentrated Valerian root or 5 mg of Valium.

Maybe if you can frame it all in this context you may not feel as fearful of treatment.

In the nearly 8 years of chasing this stuff now I have not heard of one single person who gained migraine control through the use of herbs. Sure, massage, mediatation, essential oil etc all help to make us relax and feel better – and reduces stress (a trigger), but it ain’t gonna stop this beast unfortunately.

Be interesting to hear others’ points of view on this.

Scott :slight_smile:

— Begin quote from “Tamsha”

Have any of you had to take time off work like I have to try and get this to some level of normal living?

— End quote

My 15-year-old son was off school entirely from the last week in September until early January, trying to get a handle on this. It was awful. He’s back in school now, but we still haven’t got a “regular” schedule for him – for one thing, school starts so early here (7:25 a.m.), and lack of sleep seems to be a huge trigger for him, so we don’t want him at school first period. We want to be sure he gets enough sleep. (His usual schedule right now is 10 p.m. to 7 a.m., and that seems to be enough.) He couldn’t go back into his math class after three months off, so he’s taking an online math class, but that’s not going well. :frowning:

Anyway, I think it’s pretty common to have to take time off work when this thing hits. His neurologist said it would take at least three months to get it under control, and that recovery was likely to be two steps forward, one back, for a good while. You know, the way you identify triggers is when you haven’t had something for a while, or done something for a while, and then you do it, and BAM it knocks you off your feet. So the path to recovery isn’t smooth.

Besides meds, he’s taking CoQ10 and magnesium. His neurologist has all her migraine patients take magnesium. And she tells them all to stay away from aspartame – he found out why, when he had some sugarless gum right after Christmas.

If I were dealing with it, I’d be impatient, too. I was impatient while my boy was down with it – I wanted him to be better right now! But I don’t think there’s any way to hurry it up. You just have to hang in there.

Mamabear

oh i know what you mean Scott believe me. i spent a fortune on this one guy and got no relief. the accupuncture really helped me relax but mostly went there for menopausal stuff. I have gone to chiropractors for many years - i had a car accident right before all my dizziness started which really makes me wonder and yes that’s scary too.

i just don’t like antidepressants not sure why but maybe another class of drugs might work some day. right now i’m trying the hormonal thing - swore i;'d never do that and i am so we’ll see if it helps at all afte ra while if not i’ll stop. I just don’t have a neurologist to work with and my insurance has changed greatly so i would have to pay a lot to find a new one - one day at a time we’ll see what happens - the valium gets me through - never dreamed i’d take that either :slight_smile:

chris

Tamsha - I took an entire month off of work in December to get my migraine more managed. I was grateful for the time to trial the meds and judge the benefits versus side effects while getting more rest without the pressure of having to perform at work. Scott and Victoria are right: you will most likely have to medicate this beast to bring it to the ground. Work with your neuro and ask for something for the anxiety. The neuro should understand a patient’s desperation to feel better and get their life back under control. In the meantime, try a medication soon. All you have to lose is the horrible dizziness you have been enduring. We’re here to encourage you as you try.
Gail
P.S. I also tried herbs, homeopathic remedies, and supplements. Nothing works like meds.

— Begin quote from “scott”

In the past when I did take a mix of liquified herbs I ended up with reflux for weeks, and 2 years ago when given a Chinese mix to take I was so dizzy from it, it nearly ruined a Christmas holiday up north here. I sat on the beach all day with my head spinning out.

— End quote

Are you sure it wasn’t a Nimbin mix rather than a Chinese mix…?

Tamsha,

I’ve been housebound with chronic migraine a few times actually. Once while I was overseas I had to delay my flight home it was so bad and a couple of years ago I had a full month off. BUT, gradually, I got better. So hang in there. If you have the sick leave, take it. That’s what it’s for. Three months is the benchmark for starting to see tangible improvement.

People take drugs all the time and think nothing of it. Coffee, cola, Red Bull, cigarettes, alcohol, aspirin, St John’s Wart, cold and flu tablets etc etc. But when it comes to prescription drugs they freak out. I don’t understand it. Personally I have no reluctance taking drugs which have been prescribed for me. But then I am from the same gene pool which produced my Dad, who today told me that he recently had to have a medical procedure involving sedatives and pain killers. He rang up a day early and said “I love all that stuff, can you give me double the dose?” After they stopped laughing they agreed. True story! :lol:

When you think about it prescription drugs are in many ways safer than all those things I mentioned already and also herbs - because the meds and the dosage are prescribed by an actual doctor, specifically for you and you are under that doctor’s ongoing supervision.

Chris, re the acupuncture. I’m sure it was relaxing but perhaps an even more enjoyable use of your relaxation dollars would be to get a massage, a facial or a mani/pedi. I’m serious. Enjoy yourself! :smiley:

Vic

— Begin quote from “Victoria”

But then I am from the same gene pool which produced my Dad, who today told me that he recently had to have a medical procedure involving sedatives and pain killers. He rang up a day early and said “I love all that stuff, can you give me double the dose?” After they stopped laughing they agreed.

— End quote

so migraine isn’t the only thing you can blame on your genes then - although I suspect identifying the “valium lovers” gene isn’t high on the list of any researcher’s to do list :lol:

— Begin quote from “lorcalon”

so migraine isn’t the only thing you can blame on your genes then - although I suspect identifying the “valium lovers” gene isn’t high on the list of any researcher’s to do list :lol:

— End quote

Gabrielle, ‘gene blaming’ is one of my family’s favourite games to play. Mostly it is my Mum saying “you didn’t get that from me”. :lol:

The Valium affection is pretty clearly from Dad’s side. The good thing is I’m aware of it so, despite my declarations of Valium love, I am actually pretty careful and prudent with it. The less I use it the better it works when I need it.

My doctor prescribed me Ativan for anxiety which I take sparingly. What is the difference between valium and ativan?

Also, in Canada we normally see our neuro once as a consult who prescribes treatment to our family doctor to which we conduct follow up visits. Is this how everyone else handles their treatment? I would like to see a neuro more often as they are more knowledgeable but the doctors hesitate to do that and the waiting times are horrendous.

Tamsha,
THe Valium vs. the Ativan is in the half life…how long it lasts. You get more bang for your buck from longer lasting benzos like Valium and Klonopin…which I use in very small doses. I used Ativan when I first tried Lexapro, as it cranked up my anxiety. The combo worked well, but I realized I couldn’t stay on the benzo, and couldn’t tolerate Lex without it…so I quit them both cold turkey. I didn’t know what the hell I was doing, and that time of my life is what keeps me searching and learning about these meds now…I almost jumped off a cliff…went to a dark place I can hardly stand to think about it was so bad…
So fast forward I know a lot more now…but the truth it, with brain chemistry it’s a guessing game. No one can test you to find out what you need, so we are guinea pigs trying to find what our delicate brains are needed to balance out…
What dose of AMi were you taking? I thought it helped me to a degree, but I started at 2.5 then 5 and worked up to 20mg…but it didn’t do too much, and then I went to Cymbalta, which has been good for me.
It could be the Norephinephrne in the Ami got you hyped out…another class of meds, or another tricyclic might work…again, it’s hit and miss…some people get a bullseye on their first try, and to them I say You lucky duck!!!
Kelley

Victoria,

You have suddenly made me think of something. My mum is Austrian, met my dad (RAF) married and came to England after the war. She was in such a state, the dr. put her on valium and libriam (thats all they seemed to use in those days), she got addicted and is still on the valium to this day (aged 85). Now I am thinking, she gave birth to me with this stuff inside her, I wonder if something was passed on to me, perhaps I need it :shock:

As for Acupuncture and herbs. I paid a fortune way back for this bag of twigs I had to boil up like a witches brew, stunk and didnt taste much better, which did nothing. As for the acupuncture, I had to drive through tea time traffic in town after work to get to this little office. Naturally I was stressed out when I arrived. She would stick the pins in me and leave the room for 20 minutes, then she would come in and say “dont you feel better than when you came in” and I would say “well yes”, but that was because after the rotton drive and a hard day at work, I had laid down and relaxed for 20 minutes.

Over the years I have tried, knysiology, bowen technique, chiros, osteopaths, homeopathy, herbal remedies, even laid there with a hard boiled egg on my naval, nothing made any difference. I have a friend who laid every night on a red spotted hankie because someone said it would help her CFS. Were we desperate or what :roll:

Christine

Hi Tamsha,
I am much like you are, I am not too fond of medications. I have been fortunate to have not had to rely on them, but I do know there are times when they are needed. I have also used chinese herbals that have done more for me than any conventional meds could have done, with no side effects, for non-migrainous problems, so I know their value. I have used conventional meds occasionally over the years and while I have been able to manage my migraine without them so far except for occasional usage of promethazine during my worst years, I do know I may not always be so fortunate to maintain migraine health in the same manner that I have achieved now, which is entirely trigger avoidance and an occasional use of acetaminophen. Time will tell. The best you can do, if your frame of mind is like mine, is to research all possibilities, to understand how they work and the possible side effects, to address any unanswered questions or fears. A pharmacist often knows more about the details of what prescriptions will do, more so than doctors in many instances, and they can be helpful in answering questions for you also. Don’t be afraid to ask for an alternative if the doctor recommends something to you that you are seriously uncomfortable with. A good doctor will respect your concerns and work with you if there are options.