Headaches and passing out/fainting

Hi All,

I'm sure that most of you know that in addition to chronic intractable migraine, I also have POTS and faint a great deal. I usually faint anywhere from 0-12 times each day. I have only noticed one pattern- when the pain gets worse, I faint a lot more. Has anyone else experienced fainting spells from migraine?

I can't help thinking that these two things have to be connected in some way. I don't know if it is a reaction to pain and my body sort of shuts itself down for a second, or what. i only know that there must be a connection. However, all of the drs keep telling me that they are separate things. I wonder if we could do some sort of trial with pain control and see? I know this is just a shot in the dark and I am blindly trying to put stuff together, but I do not know what else to do.

In the past two weeks, I have fainted at least 10 times each day. A couple of weeks ago, I had fainting followed by confusion. It turned out that part of this was a medication side effect. However, I have had a few instances where the confusion has returned. It is just scary and I want some kind of answer. My balance is also a little off, so I am using walking stick to counter balance and break the fall. I am 29. I know that drs are human, but I just need one to sit down and go over this with me. I would try getting in touch with my cardiologist, but he is off for the next month and in another state. I am looking for other drs and I do keep all current drs apprised of the situation. I am just frustrated.

I would love any advice or ideas.

Pain free days,
sailingm

Just once recently I almost passed out SM. My neurologist suspects it was because I triggered my vagus nerve which in turn triggered the migraine.

I'm sorry your having a rough time, I hope you get some answers soon.

sailing,

this is part of neuroregulation. there is a connection between the body's reaction to pain and syncope--a tic in how the system works, and it's abnormal.

all of the experts on syncope that i have seen want all opiates and benzodiazipines stopped. they feel it is interrupting the autonomic nervous system from working properly, and/or making it function worse. (this will be CCF's mantra).

confusion is showing some starvation of blood to the brain. your HR might be slowing down during the episode that all the juice isn't getting upstairs--that needs to be investigated further. other possiblity is some type of siezure activity. i know you've been worked up for that and it's been ruled out.

with my faints i have severe confusion afterwards and it can take half an hour or more to really regain normal brain power.

are your events drop attacks or are they defined as true syncope?

this is outside of cardiology. the specialists in syncope that are cardiologists look at a couple things....heart rhythm and blood flow. even an EP study can help diagnose some rhythm issues, but they won't show much a very large amount of time. you've had enough monitors that would have detected by now a rhythm problem. outside of that, they really can't do much except change a few meds here and there. you need a heavy hitter in the neuro field, and maybe some neurodiagnostics (neuroradiologist) to do some hunting.

my problem varies a bit from yours, but as LG mentions, the vagus nerve is a huge culprit with this type of syncope.

so yes, i do think there is a link with migraine and syncope, however the type of syncope or faint is going to be tough to figure out. that's why i think they really need to look at your neck and spine in mega detail.

good luck,
mgb

SM, I've never experienced a problem fainting such as you describe, but I've had dizzy spells when the pain gets very bad. The last really bad dizzy spell happened when I was out for the afternoon. A bad migraine hit me when I was at the bookstore. I couldn't catch my breath, blood was rushing to my head, and I felt like I was going to faint. I had to stop and lean against the book stacks to keep from fainting, and as soon as I felt able to drive, I left and came home.

That was about a month ago. It ended up being a 3-day migraine that was pretty bad for me, a 9/10, which I rarely get any more after going back on topomax.

I hope you can get relief from this soon. I really feel for you. I'm sorry you have to deal with this, and the dr's unable to figure out what is causing it.

I faint when my migraines are very bad but I think I faint for a different reason. I don't faint nearly as often and when I do it's because I am very very out of it and I am generally very dizzy, numb on one side of my body and tend to lose my vision with my worst migraines.

So sorry that you are still having such a diffiuclt time,

..I faint when the migraines get severe..Also, before I had my hysterectomy due to endometriosis..just how my body reacts..thankful that it hasn't happened too often it public..Costco was bad enough

Please be careful..I'll be praying for you.'
Greeneyes

I haven't ever fainted, but I have had confusion with the very bad migraines. Also when they hit like a bolt out of the blue, it almost knocks me off my feet and I have to lean against a wall or something to keep from falling over from loss of equilibrium. That passes in a few seconds though.

Hal

Hi All,

As always, y'all have come to the rescue with great advice. I am not sure what I would do without y'all.

I have been worked up for seizure disorders (3 normal EEGs, 1 normal 24 hour EEG.) All studies have been read as normal.

As you know, I have also been evaluated for heart problems and currently have an implanted loop recorder to see if there is any problem that standard monitoring may have missed. I tried to get in touch with my cardiologist last week to report the increased fainting and confusion.

Unfortunately, I got a nurse who was not helpful- she basically told me that all the reveal transmissions had been read as normal. She also said she would pass along the information to the doctor when he returned in a month. (I know that his wife has brain cancer and I suspect this may be the cause of his prolonged absence.) I was told to follow up with my dr here, which I did and everything was ok. I am going to call back and see if I can at least get in touch with his nurse pratitioner, who is good. The main problem is that the Dr. G. is the only person in his practice who deals with dysautonomia. Right now, we are looking into getting a second opinion from the cleaveland clinic or Boston. I think we may need a fresh approach to help put the pieces together.

I wish there were more doctors who treated this horrible disease. I have had to resort to using a walking stick occasionally for balance. I feel lost and I do not know what to do. I am scared and I just wish that my drs would listen and help me to put the pieces of this puzzle together. So far, the only medications that have worked-ritalin, fioricet, florinef, and zoloft have either been suggested by me or my parents.

I have been diagnosed with neurocardiogenic syncope/POTS. As I understand it, a signal from the brain, which tells the body to raise blood pressure when standing, does not get to the right place. I agree that that the symptoms point more towards the brain and less towards the heart. However, I still feel stuck. I think looking at the vagus nerve is a good idea. However, I already have an occipital nerve stimulator in place for migraines- this means that I cannot have an MRI, which I presume is how they check the nerve. I will ask my father about it though, as he is a diagnostic radiologist. I will alaso mention it to my neurologist.

By the way, I did hear about a new pain management doctor in this area. I am going to look into it, because what we are doing now is not working. Both my neurologist and my internist mentioned him, so that is good. Don't get me wrong the current dr is a good guy, but I just don't think he knows how to treat young patients or those with chronic headaches. I feel like it is time for a second opinion.

I know that most cardiologist do not like patients to be on long acting pain meds. So, I went off all meds, except those prescribed for fainting for two months at one point and again for 6 weeks. Indeed, my first cardiologist blamed all the fainting spells on the migraine medication-even when I was not taking any. However, I eventually had to go back on the migraine medications because the headaches were unbearable and it seemed to make no difference in fainting. My current neuro has told me that it is ok to stay on the migraine meds.

The confusion, which I hoped would go away after stopping the ambien has not. I am having about one episode a day with confusion, which scares me because I know it means that not enough blood is getting to my head. However, CT was clear and so far there appears to be no lasting damage- it just scares the living daylights out of me.

I have had to result to using a walking stick in some situations to help me balance. I am also in the process of applying for a service dog, which I think will help some and give me greater independence.

If you have anymore thoughts, I would love to hear them.

Thanks.

Pain free days,
sailingm

I am really scared right now, no matter how much I try not to be.

Oh, sailingm, I wish they would find something to help you with the fainting. You suffer so. It's not fair for someone so young to be suffering as you do.

When I was fainting, it was due to nortriptyline (went through tilt table test 2x and cardiologists). My local PAC was the winner who figured the nortriptyline was doing it (neither the cardiologists nor my neurologist figured it out). Nortriptyline was absolutely awful to come off of--withdrawal was so bad for a few months. It took several months to feel like I was not going to faint any second.

Now, I have to be careful and go slowly whenrising from a chair or laying down and when bending over or squatting--I feel warm and my brain goes black for a while. I they the cardiologists tied this to orthostatic hypertension.

I'm glad you're able to come here and vent. Maybe someone rsoon will read your posts and have some recommendations. Wouldn't that be a miracle and such a blessing?

Keeping you in my thoughts and prayers, sailingm.

Becky

The old theory that blood vessels dilating caused migraine seems somehow appropriate to you Sailingm. Almost as though they are constricted so much that standing limits the blood supply even more and you faint.

Perhaps looking up old literature on what this theory was based on? There must have been science to back the idea.

I know there is a difference in blood pressure from having it measured while sitting to laying and there expected perameters, have you been monitored while moving for blood pressure and oxygen levels rather than heart function?

You probably have but just a thought.

I was just reading on good old wikipedia that ADD children have reduced blood circulation. Would this tie in with your success with ritalin?

Sailingmuffin,

When you are 63 and some of these problems are just bad memories, the fear will be long gone. Once you know what it is and can put a name on it, then you can deal with it. I know what it is like to be afraid due to health problems. I am dealing with that at the moment myself. I will know more on the 17th. I tell you this so you know that you are not alone and that we all worry about you.

I love your Avatar. Is there any way you can send me a copy of that cute little kitten?

Hal

SM,

I'm assuming the nerve stimulator was placed for migraine? Has this been checked/reviewed to see if it is working properly, and or it is affecting your body (causing syncope).

There is only one hospital that I know that will do MRIs on patients with devices, including Reveal DX and that is Johns Hopkins. The cardios there work with the radiologists to get the best MRI with some alteration to the MR.

CCF will have you repeat your entire work-ups, and this is a long, long process. Current wait time for an appointment is 3-4 months in the syncope clinic but they may be able to get you in sooner. It will require multiples tests and appointments--that may be coordinated for a trip, but it may take some time to do the coordination. I waited 6 weeks, and I'm only just an hour away.

I really don't know what else they can do for you as you've had extensive work-ups. Cardiology is going to say the same thing regarding rhythm as everyone else says.

Someone needs to retrace the steps here. Your process, not unlike mine, has had much repitition.

As always, wishing good luck.

Hi All,

Thanks again for the advice and help.

I broke the right occipital nerve stimulator wire when I fainted about a year ago. The left side works very well. Right now. we are dealing with some insurance problem but we will go ahead and fix the wire sometime in the next few months. The stimulator was placed for severe migraine in 2004. It has made a hige difference as medications work better with it and the pain can be controlled. The only reason we waited this long to fix it is so the surgeon could rule out heart and seizure activity. He has reviewed the records, so we will go ahead with surgery.

I spoke to my parents about seeing the new pain doctor and both agree that it is a good idea. If he does not work ou, I will probably see the partner of in the same practice mom goes too.

The fainting is still bad. I have at least one bout with confusion daily right now. However, I am able to bounce back quickly. I found a good looking umbrella that doubles as a walking stick- which helps a great deal with balance issues. I am pressing ahead with service dog applications as well. (I am currently having flachbacks to college application essays. All applications ask you to describe your personality, diability, why would a service dog help.) Still, I think it is a good idea and will increase independence.

I was diagnosed with ADD as a child. From all the literature I have read, a lot of patients with POTS also have/had ADD or ADHD. I was on medication for it from 4th grade until the migraines became chronic in 11th grade. So, yes, there could be some tie in.

I certainly hope that all of this turns out to be a bad memory when I am older. However, I think I will just take it one day at a time and see how things go. If the diagnosis remains POTS- there is not a lot to do but take the medication and find out how to live with it. So, I guess I will keep doing that.

Pain free days,

sailingm