Migraines and ITP

I have been having horrible migraines since my ITP diagnosis. I think it's purely coincidental, though, and more related to hormone changes since having my daughter. I took imitrex years ago when I would get them, but currently have just been trying to use Tylenol, which is pointless. Now I'm wondering what others with ITP and migraines take. Any advice is appreciated!!

Hi Taz, Ellen has had migraines since preschool and still gets them frequently, often several per week. They do seem to be more frequent when her platelets are lower, but as you said, that could just be coincidence.

There is some question whether migraines might have an ischemic component, and Ellen did find that aspirin helped her migraines tremendously. Unfortunately, her platelet counts in the 50k range contraindicates aspirin.

You should get checked for antiphospholipid antibodies.
See this earlier discussion:
pdsa.org/forum-sp-534/6-general-itp-discussion/27091-migraines-and-chronic-itp.html#30329

Hi Rob, yes I have been checked for APS. Will be checked again in February. And I think I get them when my counts are lower as well. I'm hanging out in the 50-60K range with some dips in the 40s once or twice a month. My platelet count and migraines both tend to be more on a predictable cycle these days, which I plan to discuss with my hemo in February at my next appointment. I just need some relief now as the migraines have gotten unbearable. I've had migraines since high school. They had gotten better the past few years but they're back with a vengeance now. Does Ellen take anything else for them? I'm curious if Imitrex is safe.

Ellen takes Coregard, magnesium, and nortriptyline as preventatives. The nortriptyline is a recent addition and seems to be helping a lot. It is a tricyclic antidepressant used off-label. She uses Imitrex to treat. It is usually effective, especially if taken at the first sign of migraine. I know nothing of the Imitrex safety profile, as Ellen thinks not having Imitrex would be a fate worse than death.

MSG and related food enhancers, and aged cheeses - especially very hard cheeses like Romano - are her worst triggers, though she has many. She never has done an elimination diet, though I think she should.

Ellen's headaches normally appear upon waking. It is a common phenomenon, and can result from irregular sleep cycles and caffeine withdrawal. Cutting back on coffee dependance and waking on a more regular sleep cycle both seem to help.

By the way, Taz, you mentioned dipping into the 40s once or twice a month, so are you getting weekly counts still?. You are right where Ellen is, "50-60K range with some dips in the 40s", and she does not get regular platelet counts at all, unless she has significant signs of low platelets, or when she sees her hematologist.

Thank you, Rob, for the great info! I get monthly checks. Usually on a Monday. But one week I was really busy, so I went on a Friday. I had some more bruises then, and my count was 44. So I had to go back two weeks later, and it was back to 64. But I've noticed a cycle. I get a few more symptoms in the 40s, and they generally appear at the end of a week, about twice a month. Mondays are usually in the 60s. I've done a couple checks here and there randomly and that seems to be the pattern. It's really weird.

I sometimes wish they made platelet monitors that we could use daily, like a glucose monitor. It'd be interesting to see the fluctuations and possible patterns.

Also, Rob, you said Ellen takes magnesium. I have read that can affect platelet counts. But I can't remember the source now. Have you read this anywhere in your research?

I have not read anything about magnesium affecting platelet counts. Magnesium can be helpful for a wide variety of things. I am a huge magnesium fan, but there are about 9 different types and it's a good idea to research before buying it. The most common kind sold in stores, magnesium oxide, does not absorb well and is mostly just good for constipation.

Thanks, Sandi. I had been taking magnesium glycinate, and felt better. But then I read about the platelet interference and stopped it. I might start again. Also, I found out that Imitrex is not recommended, as it is an SSRI. So, now I'm looking at my options. I've heard good things about some preventatives, such as nortriptyline, but I don't really like the idea of taking something every day. Ugh. This is frustrating.

I haven't heard of any problems with magnesium and clotting either.

Imitrex is similar to serotonin itself. It is a selective serotonin receptor agonist (which means it mimics serotonin by acting on the receptors for serotonin). SSRIs are selective serotonin reuptake inhibitors (which means they cause serotonin to not be destroyed as quickly at the receptors. SSRIs can inhibit clotting, but I cannot find anything on Imitrex (sumatriptan) having any effect on clotting.

I notice that nortriptyline can suppress platelet production to some extent. It is not contraindicated, but platelet levels should be watched.

I take magnesium glycinate also. That is a good one as far as absorption and relaxing muscles. I also take magnesium malate.

Ugh. I feel like I can't take anything. But I also feel like one imitrex would be better than an everyday pill like nortriptyline. Maybe I'll just start the magnesium again and see if that helps. Then talk more in depth with my hematologist in February. Thanks for all the advice, Rob and Sandi!

Taz:

Try not to read into it all too much. If your counts have been stable, sometimes you have to do what you have to do to treat other things. Many of us do. There are even people with ITP on blood thinners.

Any thoughts on propranolol as a migraine preventative? I have been on this before and my doctor suggested it. I need to talk to my hemo, but thought I'd see if anyone had experience with it.

Ellen has been taking nadolol (Corgard) - a similar beta-blocker - since long before she developed ITP. It did not work magic on migraines, but may have helped some. Nortriptyline is the preventative that has done her the most good.

The University of Oklahoma Health Sciences Center keeps three extensive databases of drugs that might cause thrombocytopenia. One list is for individual reports and another is for group studies. A third list reports results on testing of various drugs for "drug-dependent, platelet-reactive antibodies in patients with suspected DITP" (whatever that means). Here is the link:

www.ouhsc.edu/platelets/ditp.html

Propanolol appears on two lists, along with other beta-blockers. Tylenol appears on all three lists, so being on one of the lists does not always signify. Nortriptyline does not appear on any list, but other tricyclic antidepressants do appear.

Taz:

My thought is: All drugs have the potential to cause thrombocytopenia. If it's not on a list, the possibility is still there. If it is on a list, that doesn't mean that it will.

Side effect lists are not conclusive. They only show what has been reported. People can have side effects to a drug and not connect it to the drug. If they do connect it and tell their doctor, he may not report it. My doctor did not report my serum sickness reaction to Rituxan. I asked him and he said no, so I reported it to the FDA. I don't know if they ever included me in the statistics or not. Patients reporting side effects could skew results because they may be incorrect in their facts. For that matter, doctors could be incorrect also. The side effect could be coincidence or unrelated to the drug, or, the side effect could occur after the patient has stopped the drug and therefore, no connection is made.

My daughter has taken Propranolol for years for Graves Disease. I don't know how effective it is for migraines, but she hasn't had any problems with it.

My daughter had migraines for about the 1st year after her diagnosis. Her GP put her on propanolol daily and sumitrptan as needed. Her counts stayed in the 30's that 1st year. She had a bad spell with her blood pressure dropping and we decided that was due to the propanolol. She herself weaned herself off of it. Now we keep the sumitriptan around just in case. Luckily her count has leveled out and migraines are few and far between.

Thank you all for the great info!! This is all very helpful. I know the possibility is always there for a platelet count dip, with and without adding meds to the mix. I am not a big fan of taking meds, so I still am unsure on how I feel about a preventative. This is going to be a big topic to go over with my hematologist more.