Neurologist Gives Up

Hi,

I am so sorry to hear that your neuro gave up. I hate it when that happens. I'm not sure how many neuros have given up on me during my 17 year Migraine journey. (Have had them since age 17.) I'm sure that there is someone out there who can help. Sometimes it takes a while to find the right doctor for you.

I was very disappointed to learn that your dr wouldn't send you to another neuro and said that there was no point in seeing a pain specialist. Furthermore, if you could treat it yourself, I know you would have by now. Can you fire the GP or switch to another practice? That is just wrong. Also, pain specialists deal with pain. The main goal in pain management is to control the pain so that you can function as normally as possible. Many also do nerve blocks and that might be something worth trying. Is there anyway you could see one? If your migraines are this debilitating, something needs to be done.

Topamax is not the only preventative out there. There are many others. Depakote, Inderal, Zoloft, pristiq, etc. I'm sure you have tried them all. There isn't a magic bullet, but maybe a combination of things could work.

I think watching to see how things come out with the cefaly is fine. Is there some way to try it before getting one in order to see if it will help you? I hope things get better for you.

Also, this is just a thought- do keep a food diary. Though it sounds like you have the whole eating thing under control. Ok, now this may sound odd, but have you ever checked your blood sugar during a migraine? Maybe they are related. Ok, I know I am grasping at straws here.

anyway, hand in there.

Pain free days,
sailing

sailingmuffin wrote:Is there some way to try it before getting one in order to see if it will help you?

Pain free days,
sailing

You're advised to use it daily for at least two weeks before you can tell whether it will help you, because it's not something you use only when you have a migraine. You use it for prevention as well, and that means using it every day. I've read on another forum that people have been able to return them if they don't feel like they're working. They specifically mentioned Costco.

kloos wrote: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.

Hi kloos,

I am afraid I will be accused of spamming and this post removed but please, please, please, look at this book. It's called "How to prevent and reverse 100 diseases the new French way with Dr. Seignalet's miracle diet". In a nutshell, Dr. Seignalet , a highly acclaimed medical professor as well as a doctor with over 200 articles published in prestigious journals, worked out that all chronic diseases (including migraine) while they all have a component of genetic predisposition, they also had in common intestinal permeability aka "leaky gut". He worked out what it was in our diets that caused leaky gut. Remove those things from the diet and the gut heals and the disease symptoms disappear. It is not a cure. To maintain the remission you need to follow the diet for the rest of your life.

The book is available in Kindle version as well as paperback. The Kindle version costs $2.99 or £1.99 for a short period. Some days it is free. If you don't like the Kindle version for whatever reason, Amazon will refund your money.

http://www.amazon.co.uk/prevent-reverse-diseases-Seignalets-miracle/dp/150318496X/ref=sr_1_1?s=books&ie=UTF8&qid=1424689953&sr=1-1&keywords=how+to+prevent+and+reverse+100+diseases+the+new+French+way

Just as an addendum. What is the state of your dental health like? Do you have any extractions or root canal treatments? Are you sure you have no dead teeth? (They can be tested for "vitality" by your dentist).

Believe me there is always a solution and the first thing to do is stop relying on orthodox medicine. Doctors are completely under the control of big pharma who do not want you to get well. They want you to keep taking their filthy drugs.

The main thing is to heal your leaky gut. You may think you have tried all the dietary approaches but Seignalet nearly always works if you follow it to the letter. Remember: 57 migraine patients treated, 41 complete remissions, 12 x 80/90% improvements, only 4 failures (which could have been caused by candida, dental infections, parasites or other but the root problem would still be leaky gut).

Tension headache patients: 15 treated, 11 complete remissions, 3 x 80/90% improvements, 1 failure.

Cheers Chris

Hi Kloos,

How are you doing?

I hope you are feeling somewhat better. I just wanted to add a couple of things that have helped me.

First of all, if it is possible to try the cefaly, I would do it- especially if it is possible to return it.

How frequent are your migraines? Are they chronic or episodic? If chronic, getting some pain relief is ideal. I finally got to the point where my doctors came to the conclusion that we needed to manage the pain, just to keep me out of the ER. It has helped some. I think some nerve blocks or something are certainly indicated. But I suspect you have probably tried that.

the only other thing that has helped me recently is nitrous oxide. This is anecdotal, so far I have only had two treatments- both effective. Would it be possible to try this? I know here I have been working with my dentist and updating my neuro, who is also looking in to it.

I hope you find relief soon. Please keep us posted.

Pain free days,
sailingm

Wow, so many posts since we went on holiday. Back now and thanks to you all for replying.

Re Cafely, I am still exhausting slightly cheaper options as the offer to return it if it doesn't work seems not to be on their website anymore. The negative review is here http://theness.com/neurologicablog/index.php/electrical-nerve-stimulation-for-migraine/ although it is challenging rather than negative. I just want to be a little bit more sure before I spend that much money. The TENS machine that I bought for use on my shoulders costs £25 and does a good job so I am sceptical as to why this machine costs 10 times that.

I am currently 2 months into using vitamin B2 (riboflavin) with no noticeable change in frequency, which is currently at 24 headaches (16 migs) in the last 30 days.

aargh in fact I feel another one coming on so I'd better go....

Cefaly in the US gives you 60 days to return it and claim a refund.Here's the Refund Policy on the US Cefaly web site. Click on "Refund Policy" at http://www.cefaly.us/en/questions

Contrary to that dr's opinion, for me, Cefaly has vastly reduced the number of migraines I get, and the severity. I've had to take meds only a half dozen times in the past 11 months. When I get to the one-year mark next month, I am going to tabulate my own personal stats and will post them here.

I think I understand why a TENS unit for a muscle might cost significantly less than a unit for the brain. A cranial unit would probably have to be a lot more sophisticated than a regular TENS unit, I would think. Cefaly is not a muscle TENS; it stimulates the nerves that control arteries, causing the body to release endorphins and relax the artery walls. Maybe that's it? I'm guessing...

Have you tried magnesium? I've read that most people who suffer from migraines are deficient in magnesium, and that it helps support the nerves. I took it for a while, but it didn't seem to do much for me (except relieve some night-time leg cramps). I recently started taking it again when the cramps came back. The B vitamins didn't do much for me either, but I started taking them again just to use up the bottle.

lorente wrote:.......

Have you tried magnesium? I've read that most people who suffer from migraines are deficient in magnesium, and that it helps support the nerves. I took it for a while, but it didn't seem to do much for me (except relieve some night-time leg cramps). I recently started taking it again when the cramps came back. The B vitamins didn't do much for me either, but I started taking them again just to use up the bottle......

There's a new form of magnesium supplement called Magnesium L-Threonate which is supposed to be the only kind of magnesium which crosses the blood/brain barrier.  You could also try getting some magnesium chloride flakes.  You add water to the flakes to make "magnesium oil" which you then apply all over your skin.  This is the best way to supplement with magnesium because it does not give you a loose bowel like most kinds of magnesium taken as a supplement and you can't overdose - it will only be absorbed by the skin into the bloodstream if your body needs it.

Rather than relying on drugs to relieve the symptoms - which has obviously never really worked for you anyway,  I would say you need to look seriously at finding the root cause of the problem.  I think that you need to look particularly at your diet and I really urge you to read the Seignalet book.  Another place to look is your dental health.  Do you have root canal filled teeth, extractions, implants or mercury amalgam fillings?  Amalgam fillings do terrible damage to our health and some people are particularly susceptible.  Beware though if you have corrective dental treatment.  To my knowledge there is only one guy in the UK that will carry this out properly and that is Munroe Hall in Bedfordshire.  (Most dentists calling themselves "holistic" or "mercury free" will just make the problems worse).  Read his book:  Toxic dentistry exposed.   All those drugs will have done serious damage to your liver and kidneys (and this could be aggravating your migraines)  I would suggest visiting a medical herbalist if you live in the UK or a N.D  (Naturopathic Doctor) if you live in the US to find a safe, natural way to detox and rebuild these organs.

I was a part of the Better You magnesium spray trial back in July of this year (http://www.betteryou.com/magnesium-oil-original-spray), but surprise, surprise no change; other than greasy skin that is. They did report the usual 50% success rate for others though (is it me or do all of the migraine trials seem to be only circa 50% successful?)

I am lucky in that I have never had any work done on my teeth. I have all of them and they are all in pretty good condition. As I mentioned earlier I have tried to keep a food diary without much luck as the foods that I eat are fairly routine. It is very difficult to spot triggers in food as I get migs sometimes 3 or 4 days per week, so which food from which day was the trigger?

lorente: I am genuinely very happy that the cefaly has worked so well for you. Any treatment that works for migs is worth it's weight in gold so the fact that you have found some relief must be a, well a big relief! The refund policy doesn't apply in the UK. They offer a 2 year guarantee. but that is for manufacturing fault rather than lack of success (http://www.cefaly.co.uk/questions). My migs don't always focus on the front of my head as the pain is often in the side above my ear or my neck and shoulders. Added to this, I have tried 2 treatments focussing on the head, botox and occipital nerve block and neither made any difference. So cefaly is on my list of things to look at, but because of the initial cost, it is not near the top at the moment.

kloos wrote:I was a part of the Better You magnesium spray trial back in July of this year (http://www.betteryou.com/magnesium-oil-original-spray), but surprise, surprise no change; other than greasy skin that is.  They did report the usual 50% success rate for others though (is it me or do all of the migraine trials seem to be only circa 50% successful?)

I am lucky in that I have never had any work done on my teeth.  I have all of them and they are all in pretty good condition.  As I mentioned earlier I have tried to keep a food diary without much luck as the foods that I eat are fairly routine.  It is very difficult to spot triggers in food as I get migs sometimes 3 or 4 days per week, so which food from which day was the trigger?

Hi Kloos,

OK. It sounds like your teeth are not the problem. There is still one thing to look at with the teeth. Could you have a dead tooth without knowing about it? A dentist can test teeth for vitality. This is a very routine thing for a dentist. It's not 100% accurate. You can get false negatives and false positives but it's till worth doing just to rule it out. Although it is a simple routine thing, I would get Munroe Hall to do it if you can afford it. (He charges an arm and a leg!) I would ask him to do a cavitat scan as well.

Food triggers. Hmmm. There seems to be a general acceptance that we have intolerances to some foods and another poster is suggesting that a particular food might be a trigger. Not being a migraine sufferer myself, I'm not sure how valid this is. If a migraine sufferer says that they have found a trigger by keeping a food diary, then I'm sure this is worth looking at.

However, this is not really what Seignalet is about. His idea is that certain foods end up damaging the lining of the small intestine, which is only one cell thick. The junctions between the cells become loose and allow improperly digested molecules to traverse the gut lining and enter the bloodstream. So it is something which happens over time and you would not necessarily get an instant reaction from a particular food. The only way to find out is to try the Seignalet diet. This is not necessarily a quick fix and it may take some time for the gut to heal. Seignalet found that it could take anything between two weeks and a year for the disease to go into remission and in one particular case he cites, 2 years! This particular woman was determined that the Seignalet diet would work and though unsuccessful for two years, she was finally rewarded with a remission. From what I can gather though, remission usually comes pretty fast. A French Canadian woman who wrote a book about her experience, had Rheumatoid Arthritis, read Seignalet's book, followed the Seignalet diet and had a remission of her symptoms in two weeks.

I still think that it is worth seeing a medical herbalist. In the UK, they take a 3 year University degree so they are certainly not quacks. Herbs work in a different way to drugs. They are also natural, ie, the molecules contained in them are found in nature, whereas molecules found in drugs are synthetic and not found in nature. A herbalist will also help you to gently detox from the harmful effects of all those drugs. (Give the herbalist a copy of "How to prevent and reverse 100 diseases".)

Cheers Chris

I didn't realize there was no Cefaly return policy in the UK. I'm so sorry to hear that. Yes, this has changed my life. Sorry to sound so dramatic, but I know other migraine sufferers know what I mean. I am not without migraines, but so far, it's working very well for me. I am currently entering the time of year when my migs have historically been the worst -- 1 to 3 migs per day for 3 to 5 weeks -- so we shall see how well Cefaly handles it.

Best of luck to you. Please let us know how you're doing.

I'm just sitting eating my lunch and idly reading through this thread rather than watching yet another episode of Time Team on 4 on demand.

A couple of thoughts:

1.  Kloos - you mention that you fell off a roundabout when you were 6 but you don't remember anything about it.  Could you have damaged a tooth/teeth?  One or more teeth could have died without you being aware of it, setting up infection that would spread through your jaw,  again,  without being aware of it. This kind of thing can cause any one of dozens of pathologies.  The only person in the UK who can tell you if this is a problem is Munroe-Hall in Bedfordshire.  Go and see him.  He is terrible at answering emails by the way so you will have to be persistent.  Believe it or not I am not on commission from him.

2.  This may sound like a long shot and a bit off the wall but have you heard of the Gerson therapy for cancer?  (By the way,  if you look it up, most of the stuff you will see on the web is misinformation disseminated by big pharma's black ops operations.  Just keep that in mind).  Part of the Gerson therapy is daily coffee enemas.  Gerson originally gave these to relieve pain (you will see why in a minute) but found that the enemas had a profound therapeutic effect by getting rid of toxins in the liver.  

Where did this strange practice originate?  Well during the first world war, due to the allies' very effective sea blockade of Germany, the supply of analgesics completely dried up and German hospitals at the front were full of soldiers crying out in terrible pain caused by their wounds.   A bit like Baldrick using dandruff as sugar to sweeten the coffee (made from mud) in Blackadder (sorry yanks,  Brits will know what I am talking about), in desperation the German nurses tried giving coffee enemas to the patients using the plentiful supply of coffee needed for German surgeons to stay awake and keep operating around the clock.  (And you thought your migraine was a problem!)  To the amazement of the nurses who tried the experiment, the coffee enemas worked much better than any analgesics.  After the war, two German medical professors did experiments on rats to see why this worked.  Basically,  a constituent in the coffee relaxes the bile bladder and stimulates bile which floods the liver and removes toxins in the liver. The toxins were causing the pain.  This is particularly valuable in Gerson therapy a) because the therapy's aim is to thoroughly detox the body so natural healing can take place and b) cancer patients always have damaged livers and need all the help they can get to eliminate toxins.   According to Gerson you only get cancer when your liver is functioning at less than 40%.

One night Gerson was lying in bed, tossing and turning and wondering how he could relieve the terrible pain his terminal cancer patients were suffering without resorting to morphine.  He woke up in the middle of the night and remembered the paper written by the two German professors on coffee enemas.  The next day he tried it on his patients and the rest is history.  It became an integral part of Gerson therapy.

So three things you might explore:

1.  Get Munroe-Hall to do a cavitat scan to make sure you have no cavitations.  (If you do you will need to take out a second mortgage to pay him for the treatment!)
2.  Ask your doctor to get you tested for liver function.
3.  Look up how to do a "coffee enema" on the internet.  A key word is "Wilson's coffee" as this is the one used.  You will need to buy the coffee and an enema kit.  The enema is very easy to do once you have got used to it, although it might feel a bit humiliating at first.

I believe a coffee enema will relieve the pain much better than any of the drugs you have tried and the only side effect will be an improvement in the health of your liver and thus your general health.  You have nothing to lose and everything to gain by trying it.  

If you or anyone else tries this, please post up the results on this thread.

Cheers Chris

Hi Chris,

Sorry to say this but your posts do seem very random. Coffee enema to help migraines. Really? No, but really...? Has anyone else heard of this working (I am happy to be corrected)?

The bits are aren't random seem a little one track in promoting your dentist fellow. My teeth are fine. Really they are. I am not going to travel all the way to London just to see an Holistic Metal Free Dentist.

I appreciate all suggestions here, as I am sure we all do. But please don't repeat the same thing over and over again as some people might get a little fed up with that. I don't want to put you off posting ideas as this is the forum for migraines, but please try to keep your posts relevant.

kloos wrote:Hi Chris,

Sorry to say this but your posts do seem very random.  Coffee enema to help migraines.  Really?  No, but really...?  Has anyone else heard of this working (I am happy to be corrected)?

The bits are aren't random seem a little one track in promoting your dentist fellow.  My teeth are fine.  Really they are.  I am not going to travel all the way to London just to see an Holistic Metal Free Dentist.

I appreciate all suggestions here, as I am sure we all do.  But please don't repeat the same thing over and over again as some people might get a little fed up with that.  I don't want to put you off posting ideas as this is the forum for migraines, but please try to keep your posts relevant.

Hi Kloos,

I hope we are not going to fall out. My suggestions might sound "random" to you but not to the tiny minority of people like myself who have looked in depth at both orthodox medicine and the therapies it has suppressed down through the centuries. Orthodox medicine has not done you much good so far has it? It has no solutions for the around 115 chronic diseases mankind suffers from apart from highly toxic and dangerous drugs. I never cease to be amazed at our reverence for doctors. The NHS has become our religion and doctors the new high priests of that religion. In my opinion there are many alternative therapies that could help you. They will probably all sound "whacky" to you. I'm just trying to be helpful.

Re: the dentist in question. He is not in London, he is in Bedfordshire and he has helped me solve the problem of why I suddenly lost my hearing 18 months ago. Simple: I have cavitations caused by dental infections (shown on a special untrasound scan). His solution is to take out 5 teeth and surgically clean out the cavitations. It will cost £5k. I don't have £5k and I don't want to lose 5 teeth, particularly as bloody dentists caused the problem in the first place. I have devised my own therapy to heal the cavitations and so far it seems to be working, abeit slowly. I have my own audiometer so I can test my hearing every day. 18 months ago the 250 (very low) frequency in my left ear could not hear sound at 100 decibels. It is now at 65 decibels, a gain of 35. Other frequencies are registering 10, 15 and one 20 decibel gain. Not bad for "irreversible" hearing loss eh?

Believe me there are very simple solutions that work out there once you get past the lies of the medical profession and their real employers - big pharma.

If you want me to stop posting here - that's fine. Just say the word.

No, no please do continue to post. Some people might benefit from your ideas, however unorthodox they might appear. Let's face it, we are all a bit fed up with conventional treatments so the more ideas the better. Glad to hear that your hearing is coming back.

it's good to have a variety of opinions here, but we do not appreciate being told there are "simple solutions" out there for migraine.  many of us here have had this disorder for 40-50 years, and you don't think we've tried a lot of those things you mentioned?

losing 5 teeth is certainly not a simple nor sane fix.  as for the enemas, i was a true believer, once long ago. they did nothing at all for me, except make me high as a kite from the caffeine!

i did the whole shebang; high colonics, herbs and vitamins ad nauseum, chiropractic (which ruined my neck and required discectomy and fusion surgery), had multiple rounds of acupuncture and other hands-on therapies, had mercury fillings removed, went to alternative doctors in several states, and have been on every elimiination diet known to man and woman. now i'm on the "cavewoman"/aka ancestral/paleolithic diet, and i have had a glimmer of hope but not anything major, improvement-wise.

i know people who swear they have been cured of cancer by the gerson therapy; i know others who have died in spite of following this to the letter.

so please just don't insult us by saying things are "simple".  there are multitudes of causes for migraine, and rarely is anything simple regarding the complexities of illness.  dianne

dcook60 wrote:it's good to have a variety of opinions here, but we do not appreciate being told there are "simple solutions" out there for migraine.  many of us here have had this disorder for 40-50 years, and you don't think we've tried a lot of those things you mentioned?

losing 5 teeth is certainly not a simple nor sane fix.  as for the enemas, i was a true believer, once long ago. they did nothing at all for me, except make me high as a kite from the caffeine!

i did the whole shebang; high colonics, herbs and vitamins ad nauseum, chiropractic (which ruined my neck and required discectomy and fusion surgery), had multiple rounds of acupuncture and other hands-on therapies, had mercury fillings removed, went to  alternative doctors in several states, and have been on every elimiination diet known to man and woman.  now i'm on the "cavewoman"/aka ancestral/paleolithic diet, and i have had a glimmer of hope but not anything major, improvement-wise.  

i know people who swear they have been cured of cancer by the gerson therapy; i know others who have died in spite of following this to the letter.  

so please just don't insult us by saying things are "simple".  there are multitudes of causes for migraine, and rarely is anything simple regarding the complexities of illness.  dianne

Hi Dianne,

You are obviously like me - determined to find a solution.  I did not mean to "insult you by saying things are simple". I know that reversing my hearing loss is proving anything but simple.  I might not even get it all back.  What I mean by "simple" is that there are solutions which do not involve highly speculative theories and toxic drugs to effectively poison and kill certain "pathways".  

You say you have tried the whole shebang.  Did you ever try a coffee enema?  Edited to add: sorry I did not read your post properly - you have tried it. I have no authority for suggesting this.  It's just an idea that occurs to me and it would not take much to try it would it?  Buy an enema kit and some coffee,  try it out?  It's not going to cost much and you would soon see if it worked or not.  If it worked you would have a great way of dealing with the migraine without toxic drugs and side effects and at the very worst it is known to be brilliant for your liver and health anyway even if you get no relief from your migraine.

now i'm on the "cavewoman"/aka ancestral/paleolithic diet, and i have had a glimmer of hope but not anything major, improvement-wise.

It sounds as if it is working a little.  The Seignalet diet is the French version of Paleo.  But Seignalet was incredibly well qualified as a doctor and scientist.  He was an "enseignant-chercheur",  a "maître de conférence".  A maître de conférence is a professor/researcher and they have incredible freedom to research whatever they like under the French education system.  The deal is that when a post at a University becomes vacant the most highly qualified academics who want to apply for the post sit a competitive exam called a "concours".  Other enseignant-chercheurs from Universities all over France come and invigilate the exam and select the winner from dozens (sometimes hundreds!) of applicants.  So they are really the cream of the crop.  So once you have the tenure that comes with that post,  by French law you teach undergraduates and postgraduates for 128 hours a year and the rest of the time you do applied or blue skies research and you are supposed to communicate the results of your research to the students.   What you choose to research and how you go about it is entirely up to you.  So Seignalet was really a product of the French system.  The French drug companies no doubt hated him but they had not way of getting at him.

Why am I telling you all this?  Because his version of Paleo is the most scientifically based and the most clinically tested.
So if you are getting good results with the American version of Paleo which is not so scientifically based,  try the Seignalet version.  I think you will get much better results.

Sorry D. Cooke.  I did not read your post properly and there is no edit function on this board. Edited to add: yes there is an edit function - just found it. Doh!  You say you have tried coffee enemas.  Did they do nothing for you at all?  Had you heard from a migraine sufferer that they worked for them?  It might work for some people don't you think?  Not as a cure (although who knows?) but a side effect free palliative.

What I am saying really is:

1.  Faith in doctors is totally misplaced.  They are not to be trusted.  Do your own research.
2.  Leave no stone unturned.

I have very little interest in what the NHS doctors tell me.  I have spent several hours a day researching every therapy known to man since the stone age to try to reverse my hearing.    I have uncovered some fascinating facts.  I'm writing a book about the history of medicine and that includes the WHOLE history.

Two things I uncovered when researching that history are helping me reverse my hearing.  You can read about it in my book.

Cheers Chris

Hello.
It sounds like you have gone throught the same list of things that I have done over the years. I am now waiting for a TMS machine. The trial had a good response but officially getting the thing long term is tricky. If like me you have gone through the approved list the newer things like TMS look hopeful, so I tend to hope that there will be something out there for us soon even if it isn't quite reachable just yet.

Kloos-I'm another one in a million, as I got panic attacks while on topamax too. I had nearly every major side effect for the med.

On a funny note, a friend works for a company that does medication trials, abd they were testing topamax as a weight loss medication. She flatly refused to take the study, since seeing my experience, and agreed to take a study the rest of her co-workers thought would be more difficult. Ha! It had more side effects reported than any 5 other studies combined.

sara, that just shows-ta-go-ya that we all respond so very differently to drugs. when we have awful side effects we become very gun-shy and the docs get mad at us for not wanting to try other things.

i was afraid to try tomomax, but then it turned out to be no problem. except that it did nothing for my head. drat. dianne

Not my neurologist (he gave up long time ago) but my pain management doctor says he doesn't know what else to try. Just wants to revisit what he's done before that didn't work. Isn't that the definition of an idiot - someone who does the same thing over & over expecting different results? Really hate the thought of going in once a month to take a pee test & get my meds for the rest of my life.

i've always heard that definition describing someone who is mentally ill! just what we need; right? a doctor who's an idiot AND a crazy person.

just bein' funny here. really, i am grateful for all the docs who have stood by me, and continued to support me in whatever flaky thing i read about on the internet and bring in for their opinions. they know the desperation, but they also know that treatments without a shred of evidence in the medical literature are not very smart.

both my current primary doctor and my neurologist have gone the extra mile, to advocate for me, to get THE ONLY THINGS THAT WORK; namely 2 brand-name triptans. i would have no life without these drugs. (i hate drugs, and i think most of us do........but thankfully sometimes they do get us through life successfully).

i wish you, sprout, and all the rest of us, the grace of perseverance until we find something that works. dianne

I am waiting for my first appointment at the pain clinic. The docs refused to refer me until I had spoken to the pain clinic myself to get their agreement to see me. I then made sure to speak to a different doctor to get referred. Let's hope that they can help in some way!

So, it was with great anticipation that last week I have my long awaited first appointment with the pain clinic. Unfortunately, it also turned out to be my last appointment with the pain clinic. After getting me to tell him my entire migraine history he suggested that I take a "3rd line" tablet that don't help for most people but are worth a go. Um, isn't that what my neurologist does, offer tablets? So what's the difference between you and him? Apparently nothing. They offer psychological support for people with chronic pain, but as I seem to have my own coping mechanism, there is nothing they can offer to help with. I am at a loss as to what to do next. Currently experiencing 25 days headaches with 1/2 being migs per month.