Neurologist Gives Up

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Neurologist Gives Up

Post  kloos on Thu Jan 15, 2015 3:39 am

Hi all,

As a brief introduction, I am 44 year old man based in the UK who has been having migs for about 30 years but only diagnosed for the last 9 years.  I get 20 to 25 headaches every month of which about 10-15 are migs.  Over the years I have tried many preventative meds, which mostly made me feel awful or didn't touch the migs at all.  I have tried botox, occipital nerve block, physio, chiropractor, massage, acupuncture, allergy tests and diet changes and a hand full of alternative meds such as Q10, feverfew, magnesium sprays etc.  None of them have touched my migs.  I have searched high and low for triggers and the only one that I have found is the cold wind on the back of my neck.  I know of no others.  I don't get aura and thankfully most migs go within a day.  I take triptans, paramol, midrid and a cup of coffee to cure my migs once I get them.  Oh, not all at the same time!  I keep a diary to make sure that I don't OD on any one of them.

Yesterday I had my regular 3 monthly appointment with my neurologist and he told me that he had run out of ideas, and that he wasn't going to make any more appointments to see me.  That was a real jaw dropping moment.  He said "Carry on researching and if anything else comes on the market, ask your doctor to refer back to him again."  To be honest he has never been the most proactive of specialists.  Our appointments tended to be so quick that I could park, register at the reception, see him and get out again, still within the 20 minute drop off time for the car park.  So the good news is that I didn't have to pay any car parking fees at the hospital.  If I suggested something to him, and it was available on the NHS then he would approve it.  But now I have reached the end of the line.

But I am determined to battle on for the elusive cure!  So I thought that I might open up my plight to some real experts on this forum.  Do you have any suggestions for me?

Thank you.

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Re: Neurologist Gives Up

Post  Kem10 on Thu Jan 15, 2015 6:14 am

Many of us are trying diet tweaks even if we haven't been able to discover a migraine trigger. Sometimes is such a combo of things that trying to ID one or two food triggers is impossible thus the low carb diet that many are trying. Low fodmaps is another possible diet to explore. One thing I suggest to everyone is getting peppermint oil (not extract) and dropper it all over your head when you have a migraine. Use it along with your triptans or other meds and be very careful not to get it in or near your eyes.
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Re: Neurologist Gives Up

Post  Seaine on Thu Jan 15, 2015 4:14 pm

I have had a similar experience where the neurologist didn't have anything more for me. In retrospect, they never helped me that much to begin with so it wasn't a big deal.

This forum may be very useful for you. Even if you think you've tried everything, you probably haven't! I found that I can't eat artificial food colors - anything with a number on the label here in the US. Example: Red #40. Once I discovered this two years ago, my migraines are by no means cured but they are 75% less painful, respond to my triptans immediately, and many other symptoms such as nausea and irritability have all but disappeared. I suffered with horribly daily migraines for 14 years before I discovered this.
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Re: Neurologist Gives Up

Post  tortoisegirl on Thu Jan 15, 2015 7:32 pm

I don't have specific suggestions, but do have a general one...find a new doctor! I went through dozens of doctors before finding some good ones who truly care about managing my headache condition and keeping me as functional as possible. They have new ideas, or at least after awhile if they run out of new ones, they are receptive to ideas I bring in (and continue to manage my care). You may even want to make a few different initial consultations and interview them, to see who seems like the best fit.

When looking for a headache specialist, try to find one who only sees headache patients, all day every day, especially tough cases which are resistant to treatment (not just a neuro who has part of their practice treating headache patients). There is always something else to try (for example, literally hundreds of medications could be used to try to treat headaches/migraines); however, at a certain point it gets a bit repetitive. Hang in there! Best wishes.

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Re: Neurologist Gives Up

Post  kloos on Fri Jan 16, 2015 2:05 am

Thank you for your replies, all of which are very much appreciated.

Kem10: I have tried the York Test for food allergies and significantly changed my diet as a result of it. A number of years beforehand also tried a wheat free diet. Neither of them made a difference in my migs or sadly in my general energy levels (which aren't too bad as it happens). My wife recently bought me some peppermint oil which I find useful for taking the edge of my migs. It is similar to 4head in that respect.

Seaine: I am extremely lucky in that my wife prepared most of our meals fresh each day and she hates additives, so I do tend to already steer clear of them. It is so encouraging to her that they are working for you though. I hope that continues. I will certainly start to keep an eye on additives in the food I eat to see if I can see a pattern. The problem with getting migs so often is that the triggers merge into each other and it becomes difficult to distinguish what they could be.

tortoisegirl: It isn't east finding a new doctor in this area as everything is allocated by the NHS to your nearest specialist. I did make enquiries a few years ago to the next area but was told they all they did there was offer botox, which I had already tried. I have even seen some private, so called, specialists with marginal success. The private chiropractor was making some small progress in that I wasn't getting less frequency but the severity was slightly down. Then he decided that after 6 rather expensive appointments, to his credit he didn't want to take any more of my money as he didn't think that there was anything else that he could offer.

The search continues...

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Re: Neurologist Gives Up

Post  Mini on Fri Jan 16, 2015 4:10 am

I am sorry that you are so discouraged by your neurologist.
I think it is a good idea to try a new doctor because s/he might get a fresh look at your treatment and suggest something, anything that might help you more.

However, after decades of migraines (M) and being through different stages, and symptoms of my M and headaches, I found out that:

a/ migraine changes over the years in many subtle ways, sometimes it gets worse, sometimes it gets better, so do not loose hope (mine has now become much better as a result of preventatives and giving up over the counter daily painkillers)

b/ it is pointless to seek a complete "cure" for M, because it does not seem to exist in the present state of the medical science, and you will only be setting yourself up for failure. Instead all we can do, is to try to reduce the frequency and  intensity of pain by trying as many treatments and medicines as we can, safely.
There are many, many M triggers, too many to mention right now but do not give up on trying to find as many as possible. BTW stress is the major one for me, as are certain smells and scents and noise. Food triggers are very individual, and even in the "healthy" diet many are hidden and instant (like citrus fruit, avocado,  grapes, soya products etc, etc so many more)

I hope this is not disappointing for you, but I found that in the end it is best to be realistic and try not to expect impossible and just be grateful for any, however slight improvement.

Try to read as many posts here as possible here, this is what I did and it helped me with my improvement.

best wishes
Mini UK
PS I am not sure who told you that you cannot see a specialist outside your area. NHS allows you to "Book and Choose" your own specialist, or hospital. You have been misinformed. Mine is in London, although I live very far away from the capital.
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Re: Neurologist Gives Up

Post  sailingmuffin on Fri Jan 16, 2015 4:25 pm

Hi,

I'm so sorry to hear this. Many doctors have given up on me over the last 17 years. I've lost count of the number of doctors, headache specialists, and others I have seen over the years. Still, it is extremely discouraging when a doctor gives up on you. It brings on that horrible, "what on earth do I do now" feeling.

It also seems like you are caught up in the popular medical game called "pass the patient." Basically this happens when drs say "I can't treat this, you do it." It is very frustrating. Can your GP help at all? Maybe refer you to a different neurologist?

One of the worst things about having chronic migraines is the fact that there is no "easy fix." If you had a broken bone, the doctor can see the break on an x-ray and fix it by putting it into a cast or surgery- in other words- there is a clear problem and it can be fixed. Migraine is an extremely complicated disorder. It doesn't show up on x-rays or in blood work. I don't think we understand half of what happens to the brain during a migraine- which makes it harder to treat. You end up treating symptomatically. Over the years, I have noticed that most of the neuros/headache specialist seem to have several treatments, and when they exhaust those- they don't know what to do.

Is there anything at all that has helped you in the past? If so, start there. Sometimes you have to cycle though preventatives and change things up every once in a while. For example, if drug A helped for a while several years ago, then maybe you can try that again.

It sounds like your migraines are chronic. I have an occipital nerve stimulator implanted for migraines. This helps- before the stimulator nothing except high doses of pain medication could touch the headache. Since I had it implanted 10 years ago, medications that didn't work before, work now. The stimulator sends a false signal to the nerve to block the pain signals. The combination of the two really helps. I'm also getting Botox every three months- with the combination of the stimulator, medication and botox, the headaches are easier to control.

Have you considered seeing a pain specialist? It got to the point where my neuro didn't want to deal with the pain and so he referred me to a pain specialist. Basically, my neuro felt that the pain needed to be controlled so I wouldn't end up in the ER with a severe one. For me, it has been a god send. If you can see a pain dr for the migraines I'd do it.

The bad thing is that there isn't a quick fix. It has taken a long time to get to this point. Basically, nothing would reduce the headache alone. However, the combination of the stimulator, botox, and pain management together help tremendously.

Hang in there! Please keep us posted.

Pain free days,
sailingm
t
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Re: Neurologist Gives Up

Post  kloos on Mon Jan 19, 2015 4:33 am

Thanks Mini & Sailingmuffin.

Ok, they didn't exactly say that I couldn't see a specialist outside of the catchment area, but they weren't overly keen on allowing me to do so.  It all boiled down to the cost!  I will review this option though.  I have an unrelated apt with the docs on Thursday and I will approach them about an alternative neurologist and also a pain specialist.  I realise that there is no real cure, but I have to believe that I can find something that will at least alleviate the pain, reduce the number of days, something!.  Since I started keeping accurate records in 2011 I have never once dipped below 15 days of headaches out of 30.  That is my target, my dream, to get below 15 days and more importantly, to know how I achieved it.

I have kept a blog of my many attempts at finding a cure and if you have a spare few minutes you can read it here.  Another Migraine Blog.  It's nothing special, but it helps me to cope when I can write down my experiences.

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Re: Neurologist Gives Up

Post  sailingmuffin on Mon Jan 19, 2015 6:40 am

Hi,

I hope everything goes well for you on Thursday. I would definitely bring the headache journal in and do ask about the specialist. 15 days a month is too many. (I wish I had a few pain free days a month- I always have fome level of headache.) Very cool blog. I will certainly add it under the links section on my own blog.

Pain free days,
sailingm
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Re: Neurologist Gives Up

Post  ConcordGrape on Mon Jan 19, 2015 3:01 pm

Hi kloos,

Most all of us here can relate to your situation. Just a few months ago i was feeling equally as helpless until I switched to a ketogenic (high fat, low carb) diet, and it has changed my life. If you aren't keen on making dietary changes, have you considered exercise? I'm not sure exactly what the perfect exercise for migraines is, but it would be worth trying some different things and seeing if you get some relief. It is most important to warm up before and cool down after, as sudden activity changes can trigger M's.
I have a friend who swears by crossfit, and in my own experience, I have found that HITT workouts or yoga can help calm down or prevent pain. Getting your heart rate up is important, i think, but of course this is virtually impossible in the midst of an M attack.

Also, you mentioned that you keep a diary in order to not OD on meds. Have you tried experimenting with this, maybe taking triptans more often? This is something I've been experimenting with lately, and as a result I have suffered much less. Though my neuro insists that triptans cause rebound, I take triptan at the first sign of M, no matter how many times I've taken it that week, and usually it works. Sometimes the M comes back after, but sometimes it doesn't.

Best of luck, and i do hope you find a newer/better doctor. Maybe go for a younger one that is fresh out of school? They tend to have a better attitude towards "difficult" patients.

xo CG
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Re: Neurologist Gives Up

Post  kloos on Thu Jan 22, 2015 4:12 am

I have just returned from my doctors appointment and am feeling a little bit low at the moment. He questioned what another neurologist would have to offer as all they will do is work their way down a list of suggested treatments and nothing else. I could do that!!! In fact the doctor suggested that I should do it myself! Crazy. He said that a pain specialist wouldn't be able to add anything over and above what a neurologist would so there's no point in seeing one.

He was very nice, but told me that my expectations were too high. I should try more medication, but when Topiramate gave me major, full on, panic attacks after only 2 tablets I am extremely nervous to take any more medication (that was about my 4th preventative and none of them have worked).

So that started me thinking. What exactly is it that I do want and are my expectations to high? The answer to the second question is easy. Yes, I know that my expectations are too high as I need the hope that something might one day work. What I want is a little more complicated. I guess that I don't want to see someone who sees me as a number connected to a check list, ticking off each treatment one after the next without so much as asking me a question. I want someone to take an interest in my headaches. To try and find what triggers them. Someone to give me hope. Is that too much to ask?

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Re: Neurologist Gives Up

Post  ConcordGrape on Thu Jan 22, 2015 8:07 am

No your expectations aren't too high and everyone with a disease wants what you want--treatment, options, a promise for less pain.

I have left multiple neuro offices crying after my first visit due to the same things you describe. A doctor that isnt motivated is a HUGE letdown. And the solution is to be your own advocate, on the principle that there is always something else to try. I've resorted to reading blogs, books, research, and forums for solutions. Sometimes I feel comforted telling myself 'at least its not worse', because migraines can always get worse. At least I can get out of bed, have conversations, make breakfast, etc. currently, my neurologist has contributed ~15% of my treatment plan (i get botox every 3 mo). I found the ketogenic diet, I take rescue meds when I want and decide what to take, I exercise and meditate and keep my stress low.

I think changing my attitude was the most powerful thing I've ever done to treat my condition, and it has helped me in all aspects of life. Have you tried going the therapy route? I did some biofeedback, and more recently CBT and both have had profoundly positive impacts. I no longer feel caged by this disease, and have regained some sense of self-control.
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Re: Neurologist Gives Up

Post  Mini on Thu Jan 22, 2015 3:43 pm

I am so sorry you are feeling low. But I sense that you are a fighter, and with this condition it is easy to feel down when we cannot see much help from the professionals who are suppose to be there, to help us.

Sometimes, all we want is for someone to listen and to understands. Obviously this was not the case when you went to see your doctor. But don't give up. If you are ever going to get any improvement you need to keep trying, searching, looking for better solutions. You need to be tough and a clear head (sorry, I know this is not easy) to search for better outcomes. Tomorrow might be better, then today.
We need to believe it.
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Re: Neurologist Gives Up

Post  tortoisegirl on Thu Jan 22, 2015 8:41 pm

I too have had very discouraging doctor appointments like that. I disagree that you could do it yourself because at a minimum you need someone to prescribe the medications, advise you on initial doses & titration, discuss side effects, etc (and ideally come up with what medications to try). Additionally, its not all medications...there are alternative therapies, procedures (like injections), lifestyle changes, etc. I also disagree that a pain specialist wouldn't add anything over a neurologist.

Once I found a good one, they had many new ideas that were more to treat pain in general than treat headaches. Seeing any (good) new doctor in general should provide some new ideas. I've had very few initial consultations where the doctor had no new ideas for me. Sometimes they aren't something I am willing or able to try, but they are new ideas nonetheless.

If I can help to alleviate your fears, Topamax was by far the worst medication I've ever tried. Others were not nearly as bad. However, panic attacks are a side effect from it I haven't heard of; do you have a history of them? You have to try something to have a chance of relief. Although that something doesn't have to be a medication. Most doctors don't advise on alternative therapies and identifying triggers, but some do.

More often we come up with them from our own research (acupuncture, physical & massage therapy, diet, exercise, etc). Plus there are injections (nerve blocks and Botox are the most common). Sadly the doctors are mostly there to write prescriptions, starting from the most common. We however hope that with that comes someone who at least cares about the outcome and is educated in what to try and how to prescribe it (too often doctors can't advise on how to taper a medication, manage side effects, etc).

As far as expectations, I think any measurable amount of relief is a good outcome. 100% relief for example would be unreasonable. 50% reduction in frequency and/or severity is the typical goal of a migraine preventative therapy. Its tough to find a doctor who is actually interested in treating headache patients, but there are some out there. For starters, look for someone whose entire practice is treating headache patients (not a general neuro). The average neuro actually doesn't like treating headache patients.

Sounds like it may be time for a new primary doctor and neuro / headache specialist. I've definitely been there, a few dozen times over in fact. There is a lot of hope, especially if you've only tried 4 preventative medications. A new doctor can make a world of difference if they have a different attitude & experience & education, even if they will recommend the same treatments. Hang in there! Best wishes.

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Re: Neurologist Gives Up

Post  kloos on Fri Jan 23, 2015 2:19 am

Thank you ConcordGrape, Mini and tortoisegirl and all of the other people who have posted here. You mentioned that it is nice sometimes to find someone who will listen and understand. Well, I am eternally grateful to everybody here as it is a real weight off my shoulders to find people who listen and who really understand. All of the advice has been superb and I am taking it all on-board.

Looking at treatments that I haven't tried before, I think next will be Vitamin B2 (riboflavin). It is listed on the NHS suggested preventatives and as it happens is fairly cheap. I will also try massage as I get a huge amount of tension in my shoulders (trigger or symptom, who knows, but at least I will get some relief). I will also do some research into pain specialists in the area to see if I can get referred to them.

Re Topirimax, panic attacks was on the list of side effects, but it is right down at the bottom of the list (1 in a million), so I guess that I was just plain unlucky. I never had then before and after I got through a torrid 6 months, have thankfully never had them since.

I agree that 100% cure is not reasonable. My target is to consistently get below 15 days headache per month (this month I'm averaging 20, last month was 25 days).

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Re: Neurologist Gives Up

Post  Mini on Fri Jan 23, 2015 6:36 am

There are two more things I forgot to mention, I also had an unusual and scary reaction to Topamax, the tips of my fingers became covered in most painful blisters, and skin all over inside my hands began to peel.
When I called my Neuro to let him know, he told me to stop it immediately, and that this was very dangerous reaction.

Another thing is I wanted to ask you if you have tried TENSE device not just for pain relief, but I also use it as an intense muscle massage in neck and shoulder region.
It is not expensive and you can buy them either on the net in the Boots. I hope this might help.
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Re: Neurologist Gives Up

Post  kloos on Fri Jan 23, 2015 6:54 am

Wow, the TENS unit looks promising and I have never come across this before to help my migs. I will do some research over the weekend! This is all great stuff.

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Re: Neurologist Gives Up

Post  Migrainegirl on Fri Jan 23, 2015 9:21 pm

Kloos

First, don't feel too bad about the nuero giving up on you.  I have now been through 3 of them.  The plain fact is they really don't know how to fix this.  They have a list of things they try randomly until something works. And if nothing does, as has been the case for so many of us here, then they either blame they patient, or just say that's all they can do.  And pretty much everything on their list has been developed for other things, not migraine. They are not even sure why they work sometimes.

So first lesson is you gave to be proactive and become your own best advocate. They don't know how to fix you.

Secondly, since the preventatives did not work for you, it's time to try other approaches. It's great that you already eat a healthy diet.  Here are a few other things to try

1) Cefaly - this seems to be reducing the frequency and severity for many of us

2) have you kept a food / migraine journal?  I did this for 5 months and found two foods that were triggers I would not have guessed otherwise - lemonade and nitrates in bacon and sausage

3) have you had any kind of injury that precipitated your migraines?  That your neck is sensitive might indicate a underlying nerve damage - eg occipital nueralgia.  There are some surgeries for this.

4) I have done well with supplements. D3, magnesium often help  

5)  even if the nuero can't reduce your migraines he should be giving you pain relief / abortives for when you do get them.  If he is not you need try someone else no matter what he says.

Good luck!
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Re: Neurologist Gives Up

Post  Sara79 on Mon Jan 26, 2015 4:40 am

kloos wrote:...Re Topirimax, panic attacks was on the list of side effects, but it is right down at the bottom of the list (1 in a million), so I guess that I was just plain unlucky.  I never had then before and after I got through a torrid 6 months, have thankfully never had them since.

I hate I have to, but welcome to the club.  I have continuing panic attack issues from topamax.  My neuro, knowing I was in school and taking university level anatomy and physiology, puts me on the evil junk (I apologize to all this works for, but ugh, I have no love for it).  I'd always been an excellent student, B's were the lowest grade I'd ever had at that point, and between the memory, tingling extremities, hair loss, dizziness, suicidal thoughts, and as WebMD phrased it "Mental Disorder with Loss of Normal Personality & Reality" I was a mess.  

I was having panic attacks ever day, because I'd either have to be in class and try to survive while I felt dumber than Barbie, or at home trying in vain to stuff and keep all this information in my head.  

I went back in for my next appt, and had a meltdown and major panic attack in the exam room, with the doc.  I told her that if I couldn't get off it, I would kill myself, and put in writing that it was her fault, so at least I'd leave my husband wealthy.  Now, I feel bad for the pts scheduled after me, it took 45 minutes to calm me down enough to leave me to finish calming myself enough to get home safely, but at the time I just needed the help.  

She had me rapid taper off it (not recommended, so I was given meds to avoid the possible seizures), but by that point I'd worked up so much anxiety about my grades that I had to take an anti-anxiety med before ANY class exam.  I finished the degree, and had to pass my board exams, couldn't even think about trying to take them without the med, and I used it for every job interview, simply because topamax has completely changed how I handle stress.

I'm glad you're past the panic attacks, it's so frustrating to know that its only happening because of the medication, and you still can't make yourself stop.

Humorous post topamax story:  A very close friend of mine works for a company called Quintiles, they do medication trials for new medications or to get FDA approval to use an existing med for another condition.  They were running a medication for weight loss, which had shown good results with non-human trials and as an observed side effect for what the med was supposed to help with (migraines and seizures).  She starts reading the documentation, and figures out they're going to try to make it legal in the USA to prescribe topamax for weight loss!?!  As she's reading down the list of possible side effects, and she said she'd noticed that I had at least 60% of the side effects listed, probably more, but I didn't have vision issues and they hadn't done any blood tests on me.  I think the trial ended up with more side effects reported than the six trials ran previously combined.

Sorry for the novel, and obviously if you've got any questions, ask away, the great thing about everybody here is that I've never seen anybody here berate somebody just for asking question, unless it's a spambot asking about how to make your 'parts' bigger Wink

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Some things to consider...

Post  Sayarma on Sun Feb 08, 2015 3:02 pm

Hi Kloos,
I want to give you some other things to consider, based on my own experience. I've been diagnosed with Lyme disease (which is known to cause migraines). I also tested positive for various food allergies and intolerances (triggers). I also have a bad case of TMJ and spinal misalignment (due to a broken neck, jaws and nose). I advise you to see a cranio-osteopath doctor to check your jaw and spine alignment. Also, seek out a medical doctor who practices 'functional medicine' - they are MUCH more thorough and knowledgeable then typical doctors. Lyme disease is notoriously difficult to diagnose and treat, but you should find a doctor who specializes in that as well and get tested to see if that is the underlying issue of your migraines. And, of course, stress is a major player in the migraine mix, meditation is the solution. Since I have started working with a team of doctors, working on all of the above issues, my migraines have decreased to the point of stopping for several months. The last thing I will also put out there is that I also work with energy healers, and get significant results. Just as all doctors are not the same, all energy healers are not either; I advise you to research them as well. I wish you healing and peace on your journey.

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Re: Neurologist Gives Up

Post  kloos on Mon Feb 09, 2015 3:41 am

Hi there. Sorry for not replying to the last few posts but I have had a retched cold which strangely means that my migs disappear for a few days. Does anyone else experience pain relieving pain? Admittedly it's not the best cure but if I hurt my back, or my gout flairs up in my foot then I don't get a mig for the first 3 or 4 days of the "other" pain. It's like my body can only cope with 1 thing at a time Blog about pain stopping migs).

Anyhoo, to answer some of your very kind suggestions and questions...

Migrainegirl:
- I am a bit nervous about spending so much on the Cefaly but I am watching it's progress closely. There are some negative reviews by "so called" experts which put me off a little.
- I have kept a mig diary but have not included food. As I get the migs so often the triggers are going to merge into each other so I wouldn't know which food would actually cause the mig. Does anyone have any advice about how to do this as I would be very happy to look into my diet?
- I haven't had any injuries that I know of other than when I was a kid. Apparently I fell off a roundabout when I was about 6 but I don't remember! I have seen a physio and a chiropractor who specialised in migraines. They both altered the nature of my migs but didn't reduce the frequency to any great degree.
- I am working my way through the supplements without any joy so far. I think that I was having limited success with Q10 but stopped taking them to try the occipital nerve block and haven't started again. I decided to try B2 as it is a lot cheaper!

Sara79: From what I have heard on this forum, Topirimax is evil! Why would they proscribe it unless under extreme emergencies? I had only taken 2 tablets over 2 days so thankfully didn't have a problem stopping them immediately. But to think that only 2 tablets caused me 6 months worth of anguish is scary.

Sayarma: Very interesting that you say Lyme disease. My neurologist suggested that I get tested for that, but my doctors didn't have it on their records and didn't know how to request the test. I will definitely chase this up. I did try the York Test for food allergies and kept to the results very strictly, but it made absolutely no difference to how I felt either migs or just normal day to day. Stress... well that is a difficult one to get around. We have a 4 year old boy with type 1 diabetes. We test him at 2am every morning which interrupts the sleep pattern, not that my migs have got worse since then but it can't help. It can be very stressful managing his levels and (I hope she doesn't read this) my wife gets extremely stressed all the time about it which really doesn't help. It's like living on the knife edge sometimes. As for energy healers, I had a very interesting experience with Reiki many years ago (Reiki and Migraines).

My latest ventures are with Vitamin B2 but I have only been taking it for 3 weeks which it too early to tell yet. Once I figured out how to use the TENS machine without electrocuting myself I am using that a couple of times per week on my shoulders to try and reduce the tension, but I only started last week. I will definitely search for more specialists locally and get the test for Lyme and will update you all as soon as I get any more news myself!

kloos

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Re: Neurologist Gives Up

Post  Sara79 on Mon Feb 09, 2015 6:35 am

Most of us here cannot tolerate topamax, but I know of at least two other migraineurs who helps. One told me it was a God send, and all that kept her functional. It's worth trying, but, obviously those that have trouble, REALLY have trouble

Sara79

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Re: Neurologist Gives Up

Post  Seaine on Wed Feb 11, 2015 6:27 am

Just a note on the "pain stopping migraine" thing - that happens to me as well. It took me years to figure out why but I finally did. When I have some other pain, such as excruciating sciatic pain, I take a lot of Ibuprofen. As in, 4 every 4 hours or so. That's the common factor - the high amounts of Ibuprofen prevents a migraine from ever happening. If only I could take that my whole life..
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Seaine

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Re: Neurologist Gives Up

Post  Migrainegirl on Wed Feb 11, 2015 3:14 pm

- I am a bit nervous about spending so much on the Cefaly but I am watching it's progress closely. There are some negative reviews by "so called" experts which put me off a little.
- I have kept a mig diary but have not included food. As I get the migs so often the triggers are going to merge into each other so I wouldn't know which food would actually cause the mig. Does anyone have any advice about how to do this as I would be very happy to look into my diet?
- I haven't had any injuries that I know of other than when I was a kid. Apparently I fell off a roundabout when I was about 6 but I don't remember! I have seen a physio and a chiropractor who specialised in migraines. They both altered the nature of my migs but didn't reduce the frequency to any great degree.
- I am working my way through the supplements without any joy so far. I think that I was having limited success with Q10 but stopped taking them to try the occipital nerve block and haven't started again. I decided to try B2 as it is a lot cheaper!

- Cefaly costs about $300. Not cheap, but I've spent a lot more than that on meds that didn't work and made things worse. I feel that it helps. But you need to use it consistently, 20 min per night.

- on the diet tracking. I used an app for recording your diet for weight loss. It was pretty easy to use. I track my migraines and meds in a spreadsheet. One day I just sat down and compared them. I made a tally for various possible foods that I had on a migraine day, and then how many times I had that same food on a non migraine day and then used stats to compare them to see if it was statistically more likely to be correlated with a headache. I'll send you a link on how to do the comparison.

- on supplements, 400 mg of magnesium per day is recommended. I also take vitamin D which is good for you. And various hormones which probably would not apply to you. I ended up going to a naturopathic doctor who examines my blood levels of everything to figure put exactly what my body needs. I can say my energy levels and overall cognition are better in addition to the reduction of migs (from about 80% before to around 20%) this is more costly as it's not covered by insurance, but at least it is working for me.
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Re: Neurologist Gives Up

Post  lorente on Wed Feb 11, 2015 3:49 pm

What are the "negative reviews" you've read about Cefaly? I know doctors always say it only works for half the people in the study, but if you read the study closely, you will notice that half the people did not use it every day as they were instructed. (Sorry if I repeated that elsewhere.)

I've also read that, if Cefaly doesn't work for you, you can return it for your money back. I'm told Costco will refund your money if you purchased it there. (Please double check that, though, before you buy.) I have had more relief with Cefaly than any other thing I've tried, and I've had migraines for 42 years. If mine broke tomorrow, I'd buy another one immediately. I've used it for almost one year now, and I've had to take meds only five times since I started using it. (When I bought Cefaly, I'd been in bed for 3 weeks with migraines; sometimes I was having three per day.)

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