Bad M- trip coming up=NEED ADVICE

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Bad M- trip coming up=NEED ADVICE

Post  sailingmuffin on Tue Jun 18, 2013 6:55 am

Hi All,


Well, the migraine has been horrendous lately and I really don't know what to do. 

I had my second round of Botox last Wednesday and it has helped some, but is taking longer to kick in. (Though I have noticed that it really helped with the neck and forehead tightness and that is good.) 

One of my best friends from college is getting married later this summer. She has asked me to be a bridesmaid and even gone so far as to have Dora, my service dog in the wedding as well. Her bridesmaid's luncheon is on Saturday, as are dress fittings. and possibly a bachelorette evening. I am excited to be going. than several days of prednisoone for me. but it takes a bit to kick in.

My head is no cooperating. I did a course of decadron yesterday. (a one day course of decadron works as well as prednisone for me.) It sometimes takes a day to kick in. It isn't kicking in. I guess if doesn't help by tomorrow, I may get desperate and try a second course. I am pretty much living on the old Benedryl,, Klonopin, Tylenol3 and Ultram. This helps some, but also makes ma out of it. I'll take that over pain anyday as I can function ok. the pain is really getting to me I spent a good portion of last night crying- debating the ER. (Did not go as there is nothing they can really do for me.) So she said suggested we go to Sonic for a desert and from there to her mothers. So we did and that helped some.

I don't have a ton to do today. I have a haircut this afternoon. I may go to my parents for dinner and to see Hudson, my favorite nephew. I am going to try and rest as much as I can because I want to be ok this weekend.

I just feel stuck. I don't know what do anymore. The dctors don't seem to either-except to attempt to control the pain and that's not working well either. Is it just me or do these things get harder to break over time?

I would love any help advice, good thought, etc you can give.

Pain free days,
sailingm
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Bad M- trip coming up=NEED ADVICE

Post  Cookie Monster on Wed Jun 19, 2013 12:32 am

Dear Sailing,

My heart really went out to you when I read your message.  There are many horrible things about suffering from chronic migraines - the pain, the exhaustion, the fear... but for me the one that tops the list is the lack of predictability.  You just never know for sure when the next one is going to strike and when it does you can drive yourself crazy trying to figure out exactly what tipped you over the edge.  It is so hard to look forward to things when you just don't know how you're going to be feeling from one day to the next, or even one hour to the next.

For a while, I tried to stop looking forward to things.  Whenever anyone invited me to anything (including my husband) my response was always "We'll see how I'm feeling.  I hope I can come".  This way of dealing with things resulted in the worst bout of depression I have experienced thus far.  Not having anything to look forward to really makes life seem not worth living.

So I have come to realize that it is important to look forward to things, even if they might be impacted by a migraine.  I have tried really hard to let  go of my need to control.  After all, a special event could just as easily be ruined by a fight with a family member or some other random event as by a migraine.  And sometimes, for me anyway, the migraine doesn't come or it isn't as bad as it could be and then I spend the whole evening basking in my good fortune and thanking God for a chance to truly enjoy myself with those I care about.

My advice to you is to make a conscious decision to look after yourself well in the days leading up to the wedding and to do your very best to focus on everything but the migraines.  Smile when you feel good; rest and take care of yourself when you don't.  Focus on the fact that your friend is understanding of your situation and will not hold it against you if you are not feeling 100% on her special day.  If you are at all religious, maybe have a chat with God about how important this is to you but then leave it up to Him to take care of the rest and trust that He will do it.

As for whether or not the migraines get harder to break over time, I don't really know the answer to this.  Everyone is different.  In my experience, there are ups and downs in life and there are ups and downs with migraines.  When you are in a down, the world looks really really scary and you can't see your way out but then somehow things always get better.  I try not to fight it anymore.  I now accept that this is my life.  My migraines are here to stay.  I will keep looking for new ways to manage them but I will never fully gain control over them.  My life is much different than I thought it would be.  I am stronger than I ever would have thought possible.  I appreciate so much that I used to take for granted.  I am a better person than I would have been had this never happened to me.  My life is difficult but whose isn't?

Hang in there, Sailing.  I can't promise you that you will be migraine-free but I can say that things will get better.  Somehow, they always do.

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Re: Bad M- trip coming up=NEED ADVICE

Post  Migrainevet on Mon Jun 24, 2013 12:39 am

Hi all,
Just arrived at this forum as a result of obsessive trawling of the Internet for ideas, inspiration and support cos we never give up hope do we? There's always something we haven't tried or someone's experiences so closely mirror our own that stops us giving up the fight.
It seems migraine stories are the same the world over, as far as I can see most members of this forum are in the US, there seems not to be any UK based forums that I have found. I am Scottish and been fighting first episodic and lately chronic migraine for 35years. It has had a hugely negative impact on my life, both in terms of physical and mental health and personally. Both family and career have suffered massively. I've been signed off work now for about six weeks and due to see yet another new neuro today. Yet again I'm filled with irrational high expectations of some miracle that will get me back to a fully functioning effective mum and vet. Yeah right, who am I kidding?!
Anyway this thread struck so many cords with me I felt I had to join in, sorry to be so long winded. I've been on almost daily maxalt, ibuprofen, codeine, paracetamol, also taking vit b2, magnesium, and gabapentin. Just to get thru a day of work. Rarely even get to end of day, luckily have fairly understanding coworkers but get so tired of the 'helpful' comments- surely it's time they got to the bottom of these headaches- etc.
It's been so hard on my kids too, my eldest son gets them occasionally (:-() so is very understanding but my teenage daughter not so much.
I've very recently come to the conclusion that fluorescent lights at work are a major trigger for me and been looking into the specs thing, don't know how it didn't occur before, just always assumed was work itself.
Anyway reading this thread has helped me see that there must be many other people the world over suffering and crying out as I do. It's such a stigmatised isolating and debilitating condition and it's easy to feel very alone with it.
Health hope and happiness to you all
Migrainevet

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Trip coming up

Post  doximom on Fri Jun 28, 2013 10:56 am

Cookie Monster's outlook and advice are the best I have heard -- such wise words. Thank you.

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Re: Bad M- trip coming up=NEED ADVICE

Post  sailingmuffin on Sat Jun 29, 2013 11:07 am

Hi All,

Thank you so much for the advice and responses. CookieMonster- I think you hit the nail on the head.
Migrainevet-Welcome to the forum!

The good news is that I was able to really enjoy the trip. One of my best friends from college is getting married and has asked both me and Dora, my service dog, to be in the wedding. We were roommates the year after college so she understands the headache stuff. There was a good deal packed into four days.

On Friday night, there was a Bachelorette party. It was fun. Though most of the places we went were loud and one did have flashing lights- two huge migraine triggers- I still had a good time. I told Mary, "Ok, I know I am going to have headache after this trip, but you are one of the few people I would risk this for." So I smiled, had a few drinks with the others, and ha d a great time. The bridemaids luncheon was the next day and I did pretty well through that- only passed out once- and Dora alerted, so there wasn't any peroblem.

After the lunch, we went back to Mary's briefly to change, and consolidate cars before going to the dress fitting. Well, almost as soon I got there, I passed out. Dora wouldn't let me get up and didn't want anyoneou near me. At this point, Mary's mom said, "I'll come back and get you." She did. She also told me to rest before going to a family dinner at Mary's sister's house. I did. But I think I fainted about five or ten times while there. I spent most of the evening trying to find a good place to sit and join in conversation and on the couch. Toward the end, Mary's mother said "Sailing, do you need to go home?" I said yes.

On Sunday, another friend from college picked me up so I cuould spend some time and the night at her house. This worked out great. There weren't any events- just a nice, laid back afternoon and evening. Rachel knows all about the migraines and the fainting and is married to a chronic migraneur. I also got to spend some time with their wonderful six year old daughter. I flew back Monday morning. had a few events in the airport, but Dora alerted to all of them.

The headache has been horrendous since Tuesday. I haven't been able to function well at all. Basically, all I can do now is rest and take the meds- Tylenol3, klonopin, benedryl, and ultram. This has been keeping the pain down some. It is a little better today. My current plan is to continue resting, taking the meds, and distracting myself in various ways- watching something, reading, crocheting etc. I am hoping that this will still help. If it isn't better by next week, I can do another steroid course. So yes, I am paying the price. But, as I told my mother today, I don't regret any of it.

Pain free days,
sailingm
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SHELTER

Post  davidls on Sun Jun 30, 2013 4:26 pm

Dear Sailing,
Sorry to hear about your horrendous migraines. Best friend’s weddings are very important and I’m glad you got to enjoy the preparatory trip. Still, I can understand you're feeling stuck and your concern that your role as bridesmaid might be sabotaged. I’m a family doctor from New Zealand. I’ve always had a conviction that there must to be a way to help any illness no matter how intractable it seems. My wife suffered for decades from migraine that disrupted her (and our) life and I know how terribly miserable she was at that time. So this has been an added motivation for me to look around for alternative ways to help.
I cannot guarantee a cure for your migraine but I can say that by deciding to rest, see your nephew and so forth I am sure you are getting on to the right lines. Good!
I thought you might find my migraine emergency mnemonic helpful: It’s SHELTER
S – Stop whatever you are doing the moment you get the slightest feeling of headache or migraine aura. Stop and take rest. Above all, avoid “soldiering on” if at all possible.
H – Hydrate – take a big breakfast cup of hot water.
E – Extremities – massage the limbs especially the feet, with warm oil – sesame is best but it could be any cooking oil.
L – Lie down – some people find it helpful to have a hot bath first
T – Transcendental Meditation. Some of my patients have reported their migraine headaches ebbing away as they practise this simple, very natural technique. It’s worth the expense of learning.
E – Eat sparingly, if at all, until the headache has gone.
R – Rest and review.
This is my first go at posting on a blog. I hope it helps. Different things work for different people. I would really encourage you to just keep looking. It’s worth trying anything that will not cause harm. I’m happy to say that a number of my patients who have used simple lifestyle interventions like those above have been migraine-free now for years and this includes my wife. Some of them I wrote up years ago for the New Zealand Medical Journal.
All the best,
David Lovell-Smith

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Re: Bad M- trip coming up=NEED ADVICE

Post  Mini on Mon Jul 01, 2013 4:17 am

David, you are not mentioning if you are migraine suferrer yourself, and even if your wife is I very much doubt that your "advice" is of much use to her in the end.
Many of us would find that your "advice" cannot be taken seriously.
If you took some trouble to read at least some of our, and Sailing Muffin's posts, you would know that much more extensive measure has been tried by most M suferrers here  and the "advice" you give is at best is useless, and  therefore a waste of time, at worst it is harmful mas it misleads people into  forming a mistaken belief, that a few simple steps can be of much use in this serious and complex condition.

This leads us to a conclusion, that you are simply looking for clients on our forum, and if this is the case, go away and do not bother to come back. You have no idea what we are dealing with on day to day basis, and we do not need anyone trying to preach to us, or to profit from our pain.

If you wife indeed has migraine, I hope  thatshe was able to find a competent neurologist who specialises in M in order to help her, and that she is not relying on your homespun remedies for her pain alone.
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Re: Bad M- trip coming up=NEED ADVICE

Post  Emiline on Mon Jul 01, 2013 5:20 pm

Mini - why are you so angry?

David has mentioned that he is a doctor and his wife suffers migraines.

As someone who has suffered migraines myself for over 20 years, personally I think it is refreshing to see a GP offer practical advice instead of only discussing what drugs to take. I kinda like the SHELTER acronym.

Obviously resting isn't going to offer a cure but I can see he was only trying to be helpful.

Anyway like the rest of you, I've just joined this forum as one been looking for a solution now for a long time... I've been suffering from migraines since I was 9 years old and now I'm 33. I usually get 1-2 a fortnight which can last anywhere from 1-3 days at a time. I'm often taking days off work and missing events and I'm tired of swallowing pills.

I can relate to this thread as I'm preparing for my own wedding next Summer (in Feb, I live in Australia), and I'm trying not to think about it too much, as there's been too many times in my life that on big events I've ended up with a migraine (my birthday, exams etc). I figure its not worth being afraid over something I can't control but then I can't help but feel anxious anyway, just because of the nature of the event, if that makes sense.

Stupid head.



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Re: Bad M- trip coming up=NEED ADVICE

Post  Jewishmother on Tue Jul 02, 2013 12:05 am

SM - I am so glad that you enjoyed your trip and the wedding! Wonderful news and thanks for letting us know how it went! When we travel I push hard to make it through and after arriving home my body protests more than usual for the first few days before it goes back to it's more "normal" migraine pattern. I hope your brain settles down soon and congrats again for a successful trip!

I also wanted to add that I enjoyed the SHELTER acronym..........for me at least I need to remember that when I feel a migraine coming on that there are some things I should do in order to help my body cope with the impending onslaught......I have never thought to add hydration to the list but I will try to remember and see if it helps at all. For me I need to remember to not fight it (cause I always lose in the end), find a less stimulating environment, and grab some ice for the back of my head. What works for one person will not necessarily work for another but I appreciate hearing about the simpler things that people do to help ease their struggle.

Hoping for a better week for us all. JM
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for davidls

Post  dcook60 on Tue Jul 02, 2013 9:04 am

david, it's my opinion that you were simply trying to help, and are not trolling for patients or to convert the world to TM.  sure, most of those simplistic ideas in the SHELTER list, certainly couldn't hurt anyone.

the problem remains that the transcendental meditation or ANY kind of meditation seems quite impossible during this hideous pain, because the pain is where one thinks, and does take over the consciousness.

as for doing the list of things as the migraine is coming on......what would you suggest when the M hits at 4 a.m. when sound asleep?  

many of us here wake up with them, so have zero warning. anyway, thanks for posting.  dianne (43 years of pain)
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Re: Bad M- trip coming up=NEED ADVICE

Post  sailingmuffin on Tue Jul 02, 2013 3:21 pm

Hi All,

Thanks for all the advice.

David- thanks for posting. Some of your tips do help me. However, my migraines are chronic and I have some level of pain daily- particularly the hydration and rest. I am glad that they work for you or have impoved your wife's pain. Welcome to the forum- feel free to weigh in.

I am feeling a little bit better, but still have a pretty bad headache. But I can function, which is good.

Pain free days,
sailingm
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Re: Bad M- trip coming up=NEED ADVICE

Post  Mini on Tue Jul 02, 2013 4:15 pm

Maybe I've reacted too strongly to Dr David's post. But his advice reminded me too much about the kind of advice some doctors, or well meaning "well wishers" give you when you are desperately searching for the better treatemnts for migraine.

There are too many GPs who instead of admitting they they don't know much about migraine, try to patronise and confuse you by giving you this kind of advice like David, which as any serious migraine sufferers knows, could not bring the kind of pain we have been dealing with, under control.
What Dr David is saying might work for an ordinary headache, but a proper migraine usually demands much more complex solutions.

Dr David does not seem to understand complex neurological issues relating to migraine, like for example he advises us not to eat anything during migraine, and this is of course completely wrong advice:

Even if you might not feel like eating during migraine, we know that low bood sugar levels due to the lack of food can trigger a serious migraine episode, or turn a mild migraine, into a raging pain.
So, the proper advice for a migraneur would be, that even if you do not feel like food during migraine, it is really imporatnt to eat some food at regular intervals in order to keep those blood sugar at the steady level during migraine.
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Re: Bad M- trip coming up=NEED ADVICE

Post  Emiline on Wed Jul 03, 2013 7:50 am

Yeah the not eating bit I must admit for confuse me because I find that I do tend to feel a little bit better when I eat when I have a migraine, so that is something I make a concious effort to do when it comes on.

Once it comes on its already too late tho, it's preventing them that is important!!

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Post  davidls on Tue Jul 16, 2013 8:43 pm

Well, what an interesting experience it has been so far to contribute to a blog! Thanks to all those who posted in reply.

I suffered from migraine for two years during my late teens. I had dots in my vision that crept insidiously from the bottom left hand corner to cover most of my visual field, followed by a horrible sick, world-weary feeling that I remember vividly. I remember the aversion to light, the effort in putting two thoughts together, the desire to just get away from my loud friends and family into a dark quiet place somewhere, and the miserable vicious headache. Bad as they were, I am sure that many have experienced far worse migraines than mine, and I can only imagine what it would be like to have had migraine for 43 years.

The ideas that I put forward in my SHELTER mnemonic derive from one of the great medical traditions of the world known as Ayurveda. Ayurvedic medicine is the classical system of medicine from India and is probably about 5000 years old. By contrast our own medical tradition is about 200 years old. For about 30 years I studied Maharishi Ayurveda under the late Maharishi Mahesh Yogi. The mnemonic represents some of the Ayurvedic recommendations that I’ve found effective among my migraine patients. I decided to study Maharishi Ayurveda because I was aware that while Western medicine is very good at some things, particularly acute illness, it is not so good with the chronic relapsing illnesses. I was looking for something to fill in the gaps and Maharishi Ayurveda seemed to have something to offer.

In Ayurveda it is recognised that everyone is different. That means that everyone’s illness is a little different from everyone else’s even though there may be commonalities. This is very true of migraine. It follows that there is no ”one size fits all” cure for migraine. That might sound depressing but doesn’t need to be because it is also true that many individuals have been able to find what cures their particular migraine.

To respond to some of the interesting points that were raised:

“he advises us not to eat anything during migraine”
Well um, no I didn’t advise that. I said eat sparingly or not at all. Of course if you are feeling shaky and weak owing to low blood glucose then you should eat something. But eat sparingly. By that I mean food should be in small quantities and easy to digest. Enough to get your blood sugar up but not to strain your digestive system. Many people find hot nutritious fluids like soup are good. There is a growing body of evidence that food is best eaten when feeling physically hungry (I completed my doctorate on this topic in 2010). Physical hunger is the body’s sign that it is ready to digest. Migraine is very frequently accompanied by nausea which is a sign that the digestion is upset and not ready to digest a large amount of food, especially heavy food.
The way I see it once a migraine comes on you are between the devil and the deep blue sea as far as food goes. Not enough food and you might feel shaky and the headache might get worse, too much and you are giving the body a big job just when it doesn’t need it. It’s a razor’s edge and it is good to find the point of least risk. By that stage it’s a bit late to think of using food as therapy. In my opinion, food during a migraine is not therapy it is risk management – finding the least bad course between two bad alternatives. I agree with Emiline that the main thing is to prevent getting into such a situation if at all possible.
Just for the record my wife has not had a migraine now for over 15 years. She puts her improvement down to eating only when she feels physical hunger.

“the problem remains that the transcendental meditation or ANY kind of meditation seems quite impossible during this hideous pain, because the pain is where one thinks, and does take over the consciousness.”
This is a beautifully made point. You put it so well. The pain is where one thinks. It is not just happenstance that the pain is right there at that point. The pain is there because the mind is sick and tired of thinking. Not only is it sick of thinking, but it feels trapped in thoughts. It can’t get out of them. Thinking should be automatic and effortless but when the mind is tired then thinking can become an effort – an obligatory effort. When the effort is extreme it is downright painful.

I am not sure whether you are familiar with Transcendental Meditation. If not, then it might be helpful to know that it is quite different from other techniques in that one transcends the activity of thinking. That is why it is called Transcendental Meditation. To transcend means to go beyond, so you go beyond thoughts, and therefore beyond the field that is associated with the pain. It is as if the mind is getting out of the trap – out of jail, if you like. It’s is a big relief. Many of my patients have felt their headache ebbing away as they do it. Again Transcendental Meditation is a little different in that it doesn’t matter where one starts from. It is a very natural, effortless procedure and pain in itself is no barrier to starting the process.

“as for doing the list of things as the migraine is coming on......what would you suggest when the M hits at 4 a.m. when sound asleep? many of us here wake up with them, so have zero warning.“

Well these are the shelter strategies for when migraine comes on with or without warning, so I would suggest doing them as soon as you wake up. Of course you are already resting but you can still take a cup of hot water, get out of bed and massage, take a hot bath and do some TM. Plus anything else you have found yourself to be helpful. Just make sure someone knows if you decide to take a bath – it would not do to fall asleep there.

“might work for an ordinary headache, but a proper migraine usually demands much more complex solutions.”
One of the patients I wrote up for the New Zealand Medical Journal had had severe migraine every two months for 15 years. Apart from the headache and nausea she experienced paralysis of one side of her body and an inability to speak during each migraine episode. Nine years after learning Transcendental Meditation she had had no migraines. She commented “there is a great feeling that everything is coming into harmony, a feeling of letting go, almost as if your brain is changing, calming down, evening out.”

“For me I need to remember to not fight it”
I totally agree. Fighting a migraine will inevitably make it worse. This is what I meant by stopping.

This has turned into a long post. Not sure what the etiquette is regarding long posts. Please bear with me. I thought it would be good to explain where I am coming from and acknowledge all the good points that have been made.

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Re: Bad M- trip coming up=NEED ADVICE

Post  Cassiej on Wed Jul 17, 2013 4:36 pm

Welcome Davadis. I'm 44 years into the migraine fight and I came away from your initial posting with two great truths. I always soldier on. Now that I'm retired I am trying to break that habit. With work, family etc I had to soldier on. The retired me takes it easy, spends all day in bed drifting. Does not cure but perhaps does not escalate the pain. And my pattern is a 3 day migraine every 10 days.

And, meditation, for me, is a requirement. If I think, the pain escalates. My mind has to be very still. Migraines are great training tools for meditation. Lol!

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