Latest: The propofol doctors won’t give me the treatment because of the improvement in my symptoms following botox. I suppose they have a point. I am much better now.

Hi, I’m John, Allison’s husband.

I have had paroxysmal atrial fibrillation for ten years. I have often thought that afib and migraine, although apparently two different diseases, have many similarities. It is possible that they are both caused by ion channel defects.

I used to have frequent afib attacks; as many as two or three per week. Then two and a half years ago I underwent two investigative procedures related to something different, but both involved propofol infusions. One was a colonoscopy and the other was a gastro endoscopy.

To my surprise my paroxysmal afib ceased abruptly! Over two and a half years I have only had three episodes instead of three per week, even though I stopped taking my antiarrhythmic drug. Moreover those three attacks were vey mild and treated easily and quickly with drugs. It is possible that the propofol had a preventative effect on my afib.

Recent research has shown that propofol infusion can abruptly end afib, supraventricular arrhythmias and even ventricular tachycardia. For example see:

http://bja.oxfordjournals.org/content/89/5/798.full

We also know that propofol is over 95% effective at ending severe migraine and cluster headache.

Could it be that propofol is also effective as a prophylactic for both migraine and afib?

I will watch my wife’s experience with popofol for migraine with interest. If my afib ever returns, I will ask them to fix it for a few more years with a propofol infusion.

My Topamax is up to 225mg per day and I feel great again; like I did in my 5 December post above. In fact my headaches appear to have completely stopped once again. The moral of the story is to not get overconfident after Botox improves the situation. However I was on topamax 350mg/day and now on 225mg/day + Botox I am much better than topamax 350mg/day with no Botox.

So I have learned that not only does Botox substantially improve migraines, but it also allows you to substantially reduce the topamax prophylactic dose which reduces the awful cognitive side effects. Some neurologists say that the two treatments cannot be mixed. Obviously they are wrong. I might try dropping the topamax back down to 200mg/day and see if I can get away with that.

However, even though my migraines appear to have ended, I am still going ahead with the propofol infusions. Call me crazy if you want, but I’ll be fascinated to learn if Dr Murray Taverner really can stop migraines for over a year with one short course of treatment. Those Botox injections are painful and they don’t last more than twelve weeks. We need something painless that will last over a year. This might be it.

After the propofol infusions I will start weaning off the topamax once again and if that works I will skip my next Botox treatment. It will perhaps all end in disaster. But if it works, Dr Mauskop will be the first to know. I’ll either write it up here on this thread, or he can start a new one discussing propofol prophylactic treatment for migraines.

I’ll also write up my results here if it does not work.

OK, Dr Mauskop, I will fax the research paper to your office. It is about 12 pages long and I don’t have it in digital form. I have permission to share the paper, but I don’t have permission to publish it; so please treat it with care until it has been published; I don’t want to be sued for breach of copyright.

The problem with migraine treatment is that it has a remarkably high positive placebo response. Many of these new “treatments” can end up being false dawns, as doctors experiencing confirmation bias propose pioneering new treatments that when subjected to well designed clinical trials are exposed as worthless. For example a faith healer once stopped my migraines for two days, which for me is an incredibly long period of time. But of course they then returned and I realised that the whole thing was merely a placebo response on my part.

Dr Christina Sun-Edelstein has told me that sham acupuncture works exactly the same as genuine acupuncture to ease migraines. What does that tell us? It either tells us that the results are placebo, or that sticking needles anywhere in the skin at random placements has a therapeutic effect on migraines – which strains credulity.

Dare we even ask if Botox treatment is performing the same role as sham acupuncture? Would injections of saline have the same effect? Are we witnessing with some of these treatments genuine neurological phenomena, such as the release of dopamine and other chemicals, even though some of these treatments are actually having no serious therapeutic effect?

Perhaps my choice of FDA approved Botox was a poor example; but you get my point.

Did the trauma of Krisz’s procedures evoke a response in the brain of his patients that temporarily disrupted their migraine generating mechanism but did not actually have a therapeutic effect? To what extent are we seeing a form of “faith healing” here which is transient in nature and does not get to the core of the Refractory Chronic Migraine problem?

This is my concern about the proposed Australian propofol prophylactic migraine treatment. Am I listening to a genuine medical breakthrough, or merely enthusiastic confirmation bias clouded sales talk from doctors who have mortgages and school fees to pay and have to earn a living somehow?

I don’t know the answer to these questions. It is going to cost me a huge amount of our family money to get the answer to this one. When you are in pain and desperate you clutch at straws and throw money at anything that moves But that sort of thing cannot go on for ever or I will end up in the poor house still holding my head in pain.

Topamax plus my first Botox treatment appears to be better for me than Topamax alone. Lowering my Topamax from 350mg per day (Dr Christina did NOT put me on that stupid high dose) to 200mg per day has given me my brains back without loss of anti-migraine therapeutic effect. I still get daily migraines, but the triptans are now quickly fixing them. At 125mg per day of Topamax triptans could not touch my migraines. Nothing could stop them.

Actually I tell a lie. I accidentally discovered that Phenergan stopped them, even though I do not have nausea and sickness with my migraines. I took it as sleeping medication one night and it not only put me to sleep, but it also quickly stopped the pain. It also did that on two subsequent nights. I found that to be very weird.

But to get back to my point; and I am not asking a question here, merely thinking out loud. Should I push my Botox luck spending thousands of dollars on this new unproven treatment that my insurance will not pay for; or should I wait and see what another six or nine months of Botox plus Topamax, plus maybe a bit of Zonegran thrown into the cocktail will do for me?

Or, as I can actually afford the fees and I am, as a public service, keen to learn if prophylactic propofol migraine treatment can work; should I pull out my credit card and give it a go?

I’ll run this past Dr Sun-Edelstein and also fax the research paper to Dr Mauskop. If they agree, I’ll see if this thing flies. But if they think that it is merely more faith healing, I’ll buy a new lounge suite with the money instead!

One of my former residents, Dr. Krusz has reported on a series of patients whose migraine responded to intravenous propofol. All of his patients were treated with propofol only when they were having a severe prolonged migraine that did not respond to other treatments. I am not aware of any reports using propofol to prevent migraines, so please send me a copy of the report.

Thanks for that Dr Mauskop. I’m back up to 200mg Topamax today and feeling better. I’m now down to only one migraine per day fixed by a single 50mg Sumatriptan. That’s like being migraine free for me.

An anaesthetist in Melbourne Australia has offered to give me two propofol IV infusions on two separate visits in the same week, before Christmas. Thirty minutes light sedation but not anaesthesia. A third one if they do not work. He has noticed that his patients who have propofol for investigative procedures accidentally fix their migraines at the same time. Some remain migraine free for over a year. He now performs this as a prophylactic anti-migraine treatment for Refractory Chronic Migraine patients and claims considerable success.

I fancy giving it a try. Botox is good, but we need something to completely reset the brain back to its pre-migraine state. I know that propofol IV can stop major migraines, but I have never read of anyone taking propofol as a migraine prophylactic. In other words, they are going to carry out the procedure even if I am not in a migraine at the time. If I go ahead and it does not kill me I will let you know the result. Don’t ask the cost; it is far more expensive than even Botox. I have to pay for inpatient day stay in a hospital and the whole works.

I have a copy of a pre-publication research paper written by those doctors on prophylactic treatment for migraine, which includes a case study. If anyone wants to read it just ask and I’ll send you a copy. It’s fascinating stuff.

With repeated Botox injections you may be able to get off Topamax, but it would have to be done very slowly. Some patients have to reduce the dose of Topamax by 25 mg every 2 weeks.

Please delete my last post. Rushing down on the Topamax was the most stupid thing I did in my entire life. Don’t anyone try it. My headaches are now so bad that if anyone offered to boil me in oil to kill me I would jump at the chance. I apologise to Topamax; it did not “fail.” It was masking the true horror of my illness which I now face. I am increasing the Topamax to try to get myself out of this mess. But I still think that the Botox worked. I should not have become overconfident and dropped the Topamax. Botox plus Topamax was working good.

I apologise for drifting off topic, but this Botox treatment worked fantastic for me. My constant migraines have melted like snow in a hot oven and it is only five weeks since my first injections. It seems to be working stronger by the day. My only side effect is that I feel a million times better! I’m starting to think that I won’t even bother taking Zonegran as there is no need for it. I am almost off the topamax completely and I feel twenty years younger.

Thank you so much! I have only had one treatment of Botox from Dr Christina, so I will see if further treatments help my photophobia. I got two years almost migraine free from Topamax before it failed, so she is switching me over to Zonegran to see if that will work for a while. If not, I’ll ask her for Neurontin. I’m sure that you miss her in New York, but we need her even more in Melbourne Australia to bring Australian neurology out of the Stone Age. She speaks very highly of you Dr Mauskop. You are a wonderful person to run this blog as a public service and we your readers greatly appreciate your help.

If you do not have any headaches it is not likely that the vaginal ring or another hormonal contraceptive will help your photophobia. However, if you’ve had only a few Botox treatments, it is possible that with continued Botox injections your photophobia may subside along with headaches. Meanwhile, you can also try another epilepsy drug, such as gabapentin (Neurontin), instead of Topamax (topiramate). You can also try wearing orange tinted glasses or contact lenses. Orange color eliminates the blue part of the light spectrum, which seems to be responsible for photophobia. However, I’ve seen several patients who did not like the orange tint and preferred another color.

My chronic, almost daily migraines have been greatly helped by Botox injections carried out in Melbourne Australia by the wonderful doctor Christina Sun-Edelstein, who was excellently trained at your NYHC. However despite my substantial improvement in migraine symptoms, I am left with 24/7 severe photophobia that has not lifted for six months. This is a problem because light is a major trigger for my migraine episodes.

So my question is: Would Vaginal Ring Contraception be helpful to me in breaking this photophobia, or should I be looking for a cure by another method?
I have been on 350mg daily Topamax, but I have reduced this to 100mg daily in case the Topamax was causing the photophobia, but so far this has not helped. I intend to stop the Topamax altogether as it is not working any more.

High dose magnesium for three months has not helped. Nothing seems to ease the photophobia, which never ever stops and is wrecking my life. I am a forty seven year old female.