- Discussions
- Current Page
Back to the overview
Sticky Blood Platelets Cause Migraines
By Jenxoxo
April 1, 2010 at 1:31 pm
4,552
31
3
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.
Likes
Replies (31 replies)
Add your reply-
drmphil3 March 28 at 5:38 pm1 Like
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?
-
JenxoxoPA March 28 at 5:56 pm1 Like
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 March 28 at 6:13 pm1 Like
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.
-
JenxoxoPA March 30 at 11:56 pm1 Like
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 March 28 at 10:35 am1 Like
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?
-
JenxoxoPA March 28 at 5:10 pm1 Like
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 December 7, 2010 at 10:34 am1 Like
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
-
Sharalk November 23, 2010 at 12:36 am1 Like
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.
-
JenxoxoPA November 24, 2010 at 9:49 am1 Like
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 November 25, 2010 at 10:21 am1 Like
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.
-
JenxoxoPA November 25, 2010 at 11:01 am1 Like
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!
-
JenxoxoPA November 24, 2010 at 9:50 am1 Like
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!
-
JenxoxoPA November 24, 2010 at 10:22 am1 Like
Here is an article on Dr. John Chambers:
http://www.independent.co.uk/life-style/healt... -
toldroyd September 29, 2010 at 11:22 pm1 Like
This is a really helpful discussion. Thanks for sharing.
-
Anonymous August 10, 2010 at 10:12 am1 LikeI 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.
-
JenxoxoPA September 8, 2010 at 9:39 pm1 Like
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 July 25, 2010 at 11:05 pm1 Like
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?
-
JenxoxoPA September 8, 2010 at 9:15 pm1 Like
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 September 10, 2010 at 2:10 am1 Like
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 January 13, 2011 at 5:26 pm1 LikeEdited 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.
-
JenxoxoPA January 13, 2011 at 5:35 pm1 Like
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!!
-
JenxoxoPA September 10, 2010 at 11:13 pm1 Like
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 October 7 at 1:20 am1 Like
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 April 15, 2010 at 10:36 am1 Like
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 October 7 at 1:22 am1 Like
all the research i'm finding on the blood disorder idea is ancient (1980ish). have you read of anything recent? so interesting..
-
mosweeny October 7 at 1:23 am1 Like
oh - just saw jenxoxo's thing about john chambers - will check it out.
-
JenxoxoPA October 27 at 9:08 pm1 Like
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???
-
JenxoxoPA October 27 at 9:03 pm1 Like
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.
-
JenxoxoPA April 29, 2010 at 6:52 pm1 Like
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 December 12 at 3:37 pm1 Like
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?
-












