Sticky Blood Platelets Cause Migraines

By Jenxoxo Latest Activity April 1, 2010 at 1:31 pm Views 18,662 Replies 37 Likes 7

Jenxoxo

I just had my one year follow up with my heart surgeon and he explained to me what may be the root issue of my migraines. Quick background: I had heart surgery last year to fix a large hole (PFO) that has been known to cause migraines, although it didn't fix mine. While on Plavix, a blood thinner, I had no migraines. After stopping Plavix, my migraines returned. Back on Plavix, no migraines.

Here's the deal according to my heart surgeon (in much simpler terms): My platelets in my blood are very sticky and/or I have more than usual. When they are sticky, they can form mini-clots in the brain causing migraines or even strokes. The Plavix I am taking is bringing my blood to normal ranges by making my platelets slippery.

I read a few research papers and websites that verified this. When tested, the platelets in migraine sufferers are different from normal platelets during and in between attacks. There is a significant increase in spontaneous clumping of the platelets for people with migraines.

I am wondering if anyone else has heard anything about this. Perhaps this could be an issue for many migraine sufferers.

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Replies (37 replies)

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  • Saltra34
    Saltra34 September 28, 2013 at 2:48 pm   

    This study identifies that aspirin is effective in preventing migraines (because it thins the blood, preventing the 'mini clots' ppl are talking about in this thread). I've been on aspirin (300mg) daily for 4 months now and haven't had a single aura/migraine headache.
    http://www.nyheadache.com/blog/aspirin-is-bes...

  • Jadzea
    Jadzea August 17 at 3:38 pm   

    Wish it would work for me but it doesn't. My Dr. has me on low dose aspirin for my heart. I have PSVT and had a Cardiac Abulation in April to help correct the issue. I'll always have it just not the problems that go with it. My 2 Cardiologists just have me on low dose as well.

  • drmphil3
    drmphil3 June 5, 2012 at 9:20 am   

    Hi all — summary: my bubble test showed only one late bubble, due to symptoms, cardiologist performed TEE which showed PFO. Surgeon thought a small PFO and I had to push to get it closed. Turned out to be a large PFO - closed with a 30 mm device - the hole was the size of a nickel. Interesting - the first 3 days after my procedure, I felt amazing…best in years. 4th day - massive 3 day migraine. I remembered that they gave me a shot of Heparin at the end of the procedure. I am convinced that helped me in some way with the migraines. I mentioned it to the doctor - he said no connection. I waited a few months to see if the closure helped the migraines - no change. Went to a functional medicine doctor and he put me on Nattokinasse which is an enzyme to reduce the fibrin in the blood. Immediately, I felt better. I still get an aura migraine about twice per month - but that is from 4-5 per week before the enzyme. I am also still on toprol and keppra as preventatives. I'm wondering if I was on Plavix if I might be able to come off the other preventatives. Jenxoxo - how are your migraines now? still on Plavix? Are you on any other preventatives? I agree there is definitely a connection here.

  • Sarcohaz
    Sarcohaz March 12, 2012 at 4:43 pm   

    I had nearly your same experience. For a year following heart valve replacement, on Plavix, no sensory migraines. Went off Plavix, six weeks later started the sensory migraines again. My brilliant doctor sees no correlation. Looking for a new doctor.

  • Brissa2
    Brissa2 March 5, 2012 at 9:06 am   

    I just joined this community and saw your post. May I ask if Plavix is still working for you? I have severe migraines and was diagnosed last year with a large PFO. The cardiologist does not recommend closing it just for migraines, but did recommend Plavix. My neurologist who did the bubble test and sent me to the cardiologist told me he finds no proof that Plavix works any better than a baby aspirin a day. He does not want me on it.
    I am a 50 year old female with Irritable Bowel disease also. I am disabled due to my IBS and my migraines. My migraines became worse a few years ago when I had to have a hysterectomy. I have been on many preventatives, with no help and my drug of choice is Zomig which I know I take too frequently. I have a migraine on average once a week lasting at least 3 days. Any information would be of great help to me!! Thanks.

  • numberfour
    numberfour August 8 at 1:47 pm   

    I realize your post was over 2 years ago so not sure you will get this message. Your situation sounds similar to mine - having IBS symptoms and migraines - I also feel disabled. Also similar age - I am 53 - and migraines worsened near menopause so similar to you having a hysterectomy and hormones going through big change. From the beginning of these migraines, I have figured they had to do with my hormone change due to the timing of them but just not sure what to do to help, having tried many things. In fact, I didn't have migraines until I was in my 40s, and they have just gotten progressively worse. I also have 3 day migraines and use Imitrex which helps for about 12 hours until I need to take another one. Sometimes 1 day migraines but up to 15 in a month it seems. And when I don't have a migraine around my left eye, I have a headache on my right temple.

    I was told about a year ago that my blood seemed kind of thick - the neurologist made no connection - but not thick enough for any medication. He did recently tell me that there is evidence that a 300mg aspirin a day is something they are told to recommend now but he didn't know why - that is sad that he didn't even have an answer as to why it might help. I tried it but it didn't really seem to help, although maybe I didn't give it enough of a chance. I didn't really like the idea of taking 300 mg aspirin once a day with all the talk about NSAIDs and what they can do to intestinal lining.

    I feel like foods have a definite affect on my migraines but so hard to figure out which ones due to other triggers. Sometimes I feel like I can't eat anything without some kind of a reaction. But there are supposedly foods that help thin the blood so I might try focusing on that a little.

    I'm wondering how you have been - if you have had any relief from your migraines - done anything different over past couple of years? Did you decide to try anything having to do with thinning your blood?

  • drmphil3
    drmphil3 March 28, 2011 at 5:38 pm   

    Additional question - I had the bubble test done and it showed one late bubble. The doctor said it was basically normal. I read on another site that the bubble test is not the best test to diagnose a PFO and that a late bubble is consistent with a PFO. Do you know anything about this?

  • Jenxoxo
    Jenxoxo March 28, 2011 at 5:56 pm   

    I wish I knew more about late bubbles. I was told the bubble test was the best way to find a PFO. For example, I had a very large PFO and yet you could not see it on an echocardiogram. The bubble test was very accurate to detect the PFO. My surgeon only closes holes that are larger than a 2. The scale is from 0-5. Mine was a 5+. Is it possible for you to get a second opinion and second bubble test? Also, as far as Plavix as a migraine preventative is concerned, I don't think it has to come along with a heart defect. The only reason I found it is because of my heart defect; however, I believe it would have been preventative regardless. Thoughts?

  • drmphil3
    drmphil3 March 28, 2011 at 6:13 pm   

    I am with a new cardiologist and he is doing the stress test, holter monitor and then possibly the TEE. He will only prescribe Plavix if the patient has a stent. I also have neurocardio syncope. I'm wondering if there is a connection between that and PFO's as well. Thank you for your input.

  • Jenxoxo
    Jenxoxo March 30, 2011 at 11:56 pm   

    Keep us posted on what you find out! By the way, Plavix is an unconventional drug to treat migraines and most doctors will not prescribe it as a migraine preventative. I would suggest finding an open-minded general doctor. But please understand the side-effects and risks before trying it. I did read somewhere that the manufacturers of Plavix are considering repackaging it as a migraine preventative, but I have not seen this yet. I think they are waiting on results of studies first, which are in progress. But what we do know is that Plavix miraculously cures migraines in a certain segment of migraine sufferers.

  • drmphil3
    drmphil3 March 28, 2011 at 10:35 am   

    Jenxoxo: Is there a test to determine the sticky platelets or just try the Plavix? What was your original dose and what are you on now?

  • Jenxoxo
    Jenxoxo March 28, 2011 at 5:10 pm   

    I do believe you can be tested for sticky platelets by seeing a hematologist. The problem is that you cannot be on Plavix in order to be tested and I haven't wanted to go off of it. The original dose for me was 1 Plavix per day. I now take 1 Plavix every second day. I do get my blood clotting tested periodically. So far, even on Plavix, I am within normal range. Please feel free to ask more questions!

  • JDOL7
    JDOL7 December 7, 2010 at 10:34 am   

    I am going for my bubble test today to see if i might have the same problem. Only took 12 yrs to get to this i hope they find that this is the root of the problem

  • Jenxoxo
    Jenxoxo December 7, 2010 at 10:48 am   

    That is great! Let us know the results!!!

  • Sharalk
    Sharalk November 23, 2010 at 12:36 am   

    I had my PFO fixed on Aug. 2, 2010. I was put on Plavix for 3 months. Ten days after stopping, I had 3 migraines in a week (I haven't had one in over 2 years). So, I have a feeling it has to do with the Plavix. I started on them again and have an appoitment with my doctor tomorrow to see if I would be able to stay on Plavix, just to make sure I don't have the migraines that often anymore. I'm just hopeing that I don't have another underlying condition I need to worry about.

  • Jenxoxo
    Jenxoxo November 24, 2010 at 9:49 am   

    Sharalk — Let us know what your doctor says. I have received various opinions from different doctors. My cardiologist and family doctor both said I could remain on Plavix long term. My neurologist said I couldn't and wanted to put me on blood pressure medication instead. I have opted to stay on the Plavix. I only take one every other day now. Try to find the lowest dose you need. This will minimize any risks. Also, monitor how easily you bruise. I do not bruise on Plavix like other people do. In any case, keep us posted!

  • Sharalk
    Sharalk November 25, 2010 at 10:21 am   

    Well, she said she does not know if it would be benificial enough for me to stay on Plavix. She wants me to make an appiontment with my neurologist and cardiologist to get thier opions, too. She gave me a rx for the migraines, just in case they do come back. I'll update after I've seen the other docs.

  • Jenxoxo
    Jenxoxo November 25, 2010 at 11:01 am   

    Yes, I'm not surprised. Expect to get different opinions. This is because no one really understands it yet. Neurologists in particular, I have found, are more reluctant. You will just have to weigh your quality of life vs. the potential risks. Keep us posted!

  • Jenxoxo
    Jenxoxo November 24, 2010 at 9:50 am   

    Ps. There is a doctor in the UK that is conducting a clinical trial for Plavix on migraine patients. His name is Dr. John Chambers and his theory is that small clots are what cause the migraines in a segment of migraine sufferers. The trial does not finish until 2011. This is very exciting!

  • Jenxoxo
    Jenxoxo November 24, 2010 at 10:22 am   

    Here is an article on Dr. John Chambers:
    http://www.independent.co.uk/life-style/healt...

  • toldroyd
    toldroyd September 29, 2010 at 11:22 pm   

    This is a really helpful discussion. Thanks for sharing.

  • Anonymous
    Anonymous August 10, 2010 at 10:12 am   

    I was recently diagnosed with a PFO after years of suffering with migraines. My cardiologist doesn't think it warrants closing and I am wondering, is it normal protocol to test the platelets in these situations? I haven't had any blood work done since my diagnosis and they have basically gone back to just treating me long-term with Topamax for the migraines and not addressing the PFO at all because the results of an MRI were normal and showed no evidence of any damage from clots, mini strokes, etc.

    The PFO was found after I had a whopper of a migraine and my pupils were two completely different sizes, which freaked me out, causing me to go to the ER. Nothing was ever found and no one could explain the pupil thing, but it definitely got my family practitioner's attention about the migraines finally and he sent me for further testing.

  • Jenxoxo
    Jenxoxo September 8, 2010 at 9:39 pm   

    Hello! When you got tested for the PFO, did they tell you what size it is? They scale it from a 0-5. Mine was a 5+. They say anything above a 2 should be closed. Without white spots on your brain scan though, your insurance may not pay for it. I think that is terrible!

    It is no longer normal procedure to check your platelets. They used to test you for Factor V Leiden, a genetic blood disorder. They don't do this anymore, because if you have Factor V Leiden, they can't treat it anyway. If your insurance covers genetic testing, it probably wouldn't hurt though to know.

    The pupil thing is certainly interestingly strange. I know I have all sorts of vision disturbances, so it's probably all related somehow. Keep me posted!

  • Trudy22
    Trudy22 July 25, 2010 at 11:05 pm   

    Hi I am new to this site. I only found this as I did a search on migraines and blood platelets. I had a pfo closed 3 years ago and from then I have been on plavix. Everytime I go to go off it I get migraines. I had the pfo surgery to stop my monthly migraines. Now when I am not on plavix they are daily. It is very hard to find any info on this and I live in Australia where all this is very new and unheard of. Just wondering if you are still on the plavix?

  • Jenxoxo
    Jenxoxo September 8, 2010 at 9:15 pm   

    Hi Trudy! So sorry I didn't see your post until now. Yes, I am still on Plavix. But I am about to try a natural version called Nattosyn. Nattosyn does not have the serious side effects that Plavix has. I'm not betting on anything though. I'm just going to see how it goes. It is so interesting to meet you. I thought I was the only one with the Plavix/PFO thing going on! Reply please when you see this!

  • Trudy22
    Trudy22 September 10, 2010 at 2:10 am   

    Hi I am so glad you were able to write back. I have not found another person that is exactly like what I have and it is such a relief. I have not heard of Nattosyn but it sounds good. I would stay on Plavix if I could but I have just recently got married and would like to start a family but I can't be on Plavix if i am pregnant. I just recently saw a neurologist that can't believe that Plavix takes the migraines away. Unfortunately she doesn't believe in the pfo or blood clots would cause my migraines which is so frustrating that she is not open minded. She is sending me back to my cardiologist which is good. I wish I could find some info on the sticky blood and why it would happen so that I could show the neurologist. I too felt like the only person with this.

  • wixco
    wixco January 13, 2011 at 5:26 pm   
    Edited January 13, 2011 at 5:26 pm by wixco

    Could you tell me what you have found out about Nattosyn and its ability to reduce sticky platelets. I know it is used in Japan as a blood thinner but I'm not sure it reduces sticky platelets like Plavix does. Thanks for any info.

  • Jenxoxo
    Jenxoxo January 13, 2011 at 5:35 pm   

    Hello! Unfortunately I only tried Nattosyn for one day and got a stomach ache. I found out I am highly sensitive to soy and therefore could not continue taking it. I am very curious though if it would have worked. I do know that typical blood thinners like aspirin do not prevent my migraines; that I need Plavix, which reduces the sticky platelets. Please keep in touch with anything you find out!!

  • Jenxoxo
    Jenxoxo September 10, 2010 at 11:13 pm   

    Hello!!! Where to start? First, are you off of Plavix now or thinking about going off? I'm curious what will happen with your migraines. Just so you know (since we are very similar), my migraines were much more tolerable when I was pregnant (I have two children). Of course that was before my PFO closure. Still, you might be ok while pregnant. I am currently taking one Plavix every other day now. I have been able to reduce the risk rate by taking it every other day. Do you bruise on the Plavix? I do not, which makes me think my blood is going to normal levels on the Plavix. My neighbor who also had the PFO closure one week before I did, bruised terribly on the Plavix. Her entire legs were covered with bruising. I didn't even have one. I also had my blood clotting tested and the results came back within normal range and I was checked for internal bleeding which came back negative. This and the fact that I'm down to a Plavix every other day all signals to me that the risk of being on Plavix is much reduced in my case. I am still going to try the Nattosyn, probably starting tomorrow, although I'm a bit scared. I'll try it for both of us. ;) If it doesn't work, I'll go back on the Plavix. I have a full bottle ready just in case. LOL!

    I also saw a neurologist who refused to talk about the reason why Plavix was helping me. He simply said I couldn't be on it. It was more than frustrating. He wanted to put me on a blood pressure medication. I left in tears. My cardiologist said I could be on Plavix long term. My regular doctor said the same thing, but the neurologist simply said "no" without even considering the possibility that Plavix could be a solution. He just said it wasn't normal and that was that. I didn't go back. It's the first time I chose not to listen to a doctor. I have another neighbor who also had the PFO closure (there are four of us on my street) and her migraines have worsened. She is getting them every day, but the Plavix trick didn't work for her. Anyway, she said she stopped seeing neurologists years ago; that they are unwilling to look outside the box for solutions. She is still suffering though and when I see her dealing with daily migraines and knowing myself how it felt to have one several times per week last November before going back on Plavix, I think how fortunate we are that Plavix does work for us. We don't know why yet, but it does. I would like to get my blood platelets tested. I am looking into that.

    I will let you know how the Nattosyn goes! Wish me luck!

  • mosweeny
    mosweeny October 7, 2011 at 1:20 am   

    Hey there - just wondering how the Nattosyn is going? I am here in Japan and people eat Natto like it's candy! I can't stand the stuff - but just found out they make it in supplement form. I'm assuming this is what your Nattosyn is. Did you end up trying it? would love to know… here is also some other Japanese alternative medicine that has got some results - working on the same platelet idea (http://www.ncbi.nlm.nih.gov/pubmed/17030300)&...; love to know how it's going for you.

  • John Crowley
    John Crowley April 15, 2010 at 10:36 am   

    wouldn't that be amazing if migraines eventually become categorized as a blood disorder?

    Do you think the Plavix is helping reduce the frequency of your migraines?

  • mosweeny
    mosweeny October 7, 2011 at 1:22 am   

    all the research i'm finding on the blood disorder idea is ancient (1980ish). have you read of anything recent? so interesting..

  • mosweeny
    mosweeny October 7, 2011 at 1:23 am   

    oh - just saw jenxoxo's thing about john chambers - will check it out.

  • Jenxoxo
    Jenxoxo October 27, 2011 at 9:08 pm   

    Mosweeny: Thanks for your questions! I did not end up using the Nattosyn for long. I found out I'm VERY sensitive to soy and can no longer have soy. Therefore, since Nattosyn is soy, I could not fully try it. Like I mentioned, I'm down to Plavix only twice a week now. The link you sent was broken when I clicked on it. Shoot! Would love to see that. What is your story with migraines???

  • Jenxoxo
    Jenxoxo October 27, 2011 at 9:03 pm   

    I just wanted to give a quick update since it's been a year. I currently only take Plavix twice a week now and my migraines are practically nonexistent. I received a phone call from a teacher in my town who had the PFO closure surgery, but whose migraines were terrible. He went back on Plavix and his migraines went away over night. He is also taking them only twice a week. I had my blood clotting tested last week (I do so every six months) and my counts are normal.

  • Jenxoxo
    Jenxoxo April 29, 2010 at 6:52 pm   

    Yes, that would be very interesting! This is happening with MS right now. They are currently conducting research studies to determine if MS is a cerebrospinal venous insufficiency disorder and not a brain disorder after all. This is what got me thinking about migraines having a deeper root issue. Yes, I have not had one migraine since being on Plavix. You never know, but so far so good! I do find it very interesting!

  • myronnie
    myronnie December 12, 2011 at 3:37 pm   

    hi I had a ASO closure surgery last Febuary by Dr. Seorsen, which is like a PEO, But there is a actual hole in the heart not a flap, anyway I am trying to come off of plavix and am also experiancing migranes, I actually have one right now, I dont want to be on this forever have you heard of anyone that has come off of it and their migranes stopped after the plavix was out of their system? Also I have had trouble losing weight on plavix have you had any side effects like that?