ITP and Migraines

Hi Everyone:)
I have been a member here a long time ago when I was newly diagnosed and I have come back. I am a pharmacy student and am looking at a correlation between migraine headaches and ITP/Platelet levels. If I can really see a correlation, I have some research in mind. I have ITP with levels around 105ish and have since I was diagnosed at 23. I also suffer fro migraines and am wondering if anyone here also suffers from both?

Barb:

Have you ever been tested for APS? ITP and migraines are both symptoms. Some of us here have the antibodies.

Some people with a condition called immune thrombocytopenic purpura (ITP) have antiphospholipid antibodies. The primary problem in ITP is low platelets, the blood cells that aid clot formation and prevent excessive bleeding. Over time, some people with ITP develop APS. People with ITP and APS can have problems with excessive clotting and excessive bleeding.

Also, red blood cells can break down abnormally. This may cause fatigue, dizziness and pale skin. This is more common in people with lupus and secondary APS.

The symptoms of APS can include any of the following:

Nervous system. APS can cause:

Stroke, Slurred speech, Difficulty understanding or forming words, Change in vision, Weakness on one side of the body, Involuntary jerking movements of the arms or legs, Dementia, Migraines


www.drugs.com/health-guide/antiphospholipid-antibody-syndrome.html

I started getting migraines around the time I was diagnosed. I drastically altered my diet so I'm now gluten free, dairy free, all organics, mostly vegetarian meals, as little processed/packaged food as possible etc.. The migraines went away as I started to feel better with the healthier eating. I'm still not back to pre autoimmune health but thankfully I haven't had a migraine in a long time.

My wife, Ellen, has had frequent migraines since early childhood, but since she was diagnosed with ITP her migraines have been almost daily and more severe. There seems to be a possible (negative) correlation between her platelet counts and her headache frequency but we have not looked carefully enough at that. I, too, would be interested in knowing if other migraineurs with ITP have noticed a pattern.

Barb, I am almost certain Ellen would keep a diary in the interest of science. Feel free to contact me directly if you decide to do this.

Sem40, have your counts also improved along with your migraines, since you changed your diet?

Sandi, I thought APS cannot be diagnosed based on lab tests alone, but that there must be some clotting event. Does ITP or migraine satisfy those criteria, or would one still have to have a clotting event? Your link did not seem clear on this, and other sources I have looked at seem more restrictive. I definitely will suggest a test, in any case.

My daughter developed migraines in first grade, treated successfully with a nightly dose of periactin (an antihistamine). Once they stopped, they never returned. Then, at 12, she was diagnosed with ITP. I believe she's been tested for APS some years ago, but I have wondered if she should be tested again. I had miscarriages in my 20s, and developed migraines around the same time. I've never had ITP, but I've had Raynaud's phenomenon and other quirky things that led to testing SED rate and other lupus-type labs. I've read about the APS/migraine/ITP connection, but I've also wondered whether the migraine/ITP connection could also be serotonin-related. I'd love to know what your research turns up.
Norma

Rob:

You're right, APS itself, the syndrome, is not diagnosed unless there is a clot or repeated miscarriages. However, the antibodies can be detected to find out if a person is at risk for clots. I have had the Anticardiolipin Antibodies, so have been told to take aspirin as a preventative measure even though there is no evidence that aspirin would prevent a clot. (There are other reasons for me to take it because of Lupus anyway.)

One of those antibodies, the Lupus Anticoagulant, can have more severe consequences than the other two. I would definitely want to be tested prior to splenectomy or TPO use since those can also raise the risk of clots. I'm not sure why so many doctors are hesitant to test for it since 33% of people with ITP have the antibodies.

I've also read that Platelet Microparticles can cause headaches, so there can be several reasons. You can't test for those at this point in time.

Norma - it wouldn't hurt to have yourself and your daughter tested. My antibody titers have been elevated and normal over the years, so they do come and go.

Sandi: Thanks for clearing that up for me.

Norma: Hypercoagulable platelets, such as with APS, may cause platelet aggregation resulting in serotonin release. Thus the two factors may be part of the same process causing migraines, and not mutually exclusive.

I've never been a big believer in the serotonin thing. I never could find one credible article that supports any serotonin/platelet connection. All I've ever seen is that platelets can carry 2% of serotonin which isn't much. I haven't looked for a while though, so if anyone knows of any, please supply!

Hi everyone! Thanks for your responses. I have not been tested for APS..However I don't experience a clotting problem. I have thin blood:( so much so that if I have a large traumatic bruise it stains my skin for up to a year after ugh. My focus is actually on serotonin. There is a published study actually but only one so far. I suspect many of us actually make more platelets than a person without ITP ....just to have them destroyed at least my ITP follows that idea. I also find that my level fluctuates pretty often...sometimes pretty dramatically. I am also interested in the platelet counts of women undergoing monthly hormonal changes. I think it is important in the increased prevalence of migraines in women at certain times of the month. Right now I'm really just gathering info. I'm not at a place to really jump into it. I know I get low serotonin induced migraines and I destroy a lot of serotonin carrying platelets. It's just a start. I appreciate all the feedback and I plan to read about APS. It's frustrating that there is so much we don't understand and also so many possible causes or severities.

Sandi:

We hypothesize that in those patients, a migraine attack with or without aura may both be caused by a rise in platelet-released plasma serotonin, albeit at different concentration. At high concentrations, serotonin may cause vasoconstriction and, consequently, the neuronal signs of aura, whereas at low concentrations, it may already stimulate perivascular pain fibers and cause vasodilation via local formation of nitric oxide, prostaglandins, and neuropeptides.
www.researchgate.net/publication/224924551_Migraine_possible_role_of_shear-induced_platelet_aggregation_with_serotonin_release

Sandi, you might find these interesting. I apologize if the full text is unavailable. I am not allowed to take them from my university access and post them outside. But you can see the abstracts and results I believe

www-ncbi-nlm-nih-gov.ezproxy.ttuhsc.edu/pubmed/23489217

www-ncbi-nlm-nih-gov.ezproxy.ttuhsc.edu/pubmed/22865518

www-ncbi-nlm-nih-gov.ezproxy.ttuhsc.edu/pubmed/22486810

www-ncbi-nlm-nih-gov.ezproxy.ttuhsc.edu/pubmed/22500316

www-ncbi-nlm-nih-gov.ezproxy.ttuhsc.edu/pubmed/19827303

I have ITP and I have migraines, but for me they do not seem connected. I have been tested for APS several times but that is negative. My worst bout with increased migraines came in 2012 when my ITP was in remission. I was put on amitryptilan as a migraine preventive and have only had one occasionally since then.

Thanks for your response dru...just curious..you said amitriptylin decreased your migraines. Have you had any side effects from it? Would you recommend it to others? I would love to find something that keeps them away!

barbnrae, none of those links work. They just go to a login box.

Aaah.. these might though.

www.ncbi.nlm.nih.gov/pubmed/23489217

www.ncbi.nlm.nih.gov/pubmed/22865518

www.ncbi.nlm.nih.gov/pubmed/22486810

www.ncbi.nlm.nih.gov/pubmed/22500316

www.ncbi.nlm.nih.gov/pubmed/19827303

My son took amitriptyline for migraines when he was a teenager. It was given at a very low dose and worked well. Because it was such a low dose he had no side effects.

Yes, I do have side effects from amitryptilan. A good side effect is that I sleep well, the bad one is constipation. My mouth gets dry too. I take a low dose only 20mg a day and for me is def worth it....I get bad vertigo with migraines as well as head ache. I would recommend it to try, it doesn't work for everyone of course.

Barb:

Many people with ITP also have platelet production problems. The thought used to be that people with ITP produced lots of platelets and destruction was the problem, but that is no longer the case.

bloodjournal.hematologylibrary.org/content/117/21/5723.full

I will read those articles later...no time right now.

Rob, My counts did improve. They went from ~ 50k to 75-90k. They've never been low enough to treat so I don't have them monitored very closely. When I first started feeling really ill my counts were around 100k and I felt awful so although I was mindful of my counts they weren't my main priority when I changed my diet. I can tell when my platelets drop though. But I think when my platelets drop its a sign that whatever the disordered process is that I have going on is also active and that's what I'm feeling.

I had migraines, vertigo, constant cycles of vomiting & diarrhea, crazy episodes where I'd spontaneously produce huge puddles of sweat in like a two minute period, constant swollen glands, low low blood pressure, all over muscle pain, complete exhaustion, horrifying bouts of brain fog and of course the bruising and petechia. I was tested for other autoimmune conditions as well but so far the low platelets are all the Dr.s have been able to identify.

I think if a Dr had offered me some kind of medication and diagnosis that explained what was going on I wouldn't have focused as much on nutrition as a cure. I feel a little lucky in that regard. I'm not "cured" but I feel a lot better than I did. I still have low blood pressure, generally feel fatigued rather easily and have less frequent bouts of brain fog, exhaustion body aches and bruising especially after a cold, a stressful event or over exertion.

This is all more than you were asking but I didn't want to just say yes my counts went up and leave it at that since my counts were only a part of my problems.