Migraines and Chronic ITP

I have Chronic Migraines, 16 or more migraines per months for over a 10 month period. I have had migraines all my life and will continue having them according to my Neurologist. However, I not at this level of frequency. (we hope) I also have Chronic ITP, my normal count is less than 40k and has been for over the past 5 plus years. I was wondering who else may suffer with these headaches and what path or solution/s you have found to help.

It might be a good idea to ask to be tested for APS (Antiphospholipid Syndrome). Low platelets and migraines are two of the symptoms. It's estimated that 33% of people with ITP have the antibodies.

If you can discover a cause, it's possible that there may be a treatment.

www.onlymyhealth.com/what-symptoms-antiphospholipid-antibody-syndrome-12977607995

journals.lww.com/neurologynow/pages/default.aspx

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Imitrex knocks migraines right out for me.
I have had migraines for 3 decades prior to being diagnosed with ITP....still do.
Diagnosed with ITP 10 years ago. My 'normal' platelet count is <5k untreated, around 10k on 1/2 pulse of Dex (9k last week), 40k-60k for 2 days after a full Dex pulse, and around 50k constant on Promacta (whenever I can it again).
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APS (Antiphospholipid Syndrome): I'll bring that up at my next appt. Ive been out of commision for the last week recovering from a bad reaction to Tizanidine or Zanaflex. It's taken me almost a week and a half to recover from 2 4mg doses. It seemed have shorted out my nervous system. I actually thought I had a stroke Wed. evening in my sleep. I'm having a MRI today. I still feel reminents of the drug in my system. The new nero placed me on this drug along with my regular 100mg of topamax. Never again... The headaches have calmed down a bit and now its more like ghost headaches. I have also been prescribed Imitrex. It used to work. However, My headaches are changing. What used to work, now doesn't. As I age, my body changes and it seems that we are starting from scratch. So I have been reaching out to my different ITP forums. I have started taking 100mg of magnesium, COQ10, and a B2 to help. I am off of the Tizanidine and I have increases my Topamax to 125mg and will do so every week until reach 200mg nightly. then we will monitor. the Topamax is not good for my platelet count but it seems to help with the headaches. double edged sword??? idk what to do. My doctors go with my suggestions as long as they are sensible and my sysmptoms are managable. my platelet coount seems to stay around 30K or atleast under 50K no matter what so unless I dip under 20k and m itp symptoms become worse... we seem to stay the cousre and monitor.

So I tested positive for 1 of the 3 antibodies for APLAS. My hemo is refering me to specialist. What does this mean? We don't know. There really is not enough information to draw any conclusions at this point but it cannot be ruled out.

Do you know which antibody it was? I have the Anticardiolipin antibody.

The Lupus Anticoagulant is the most serious of the three. Most of the time, they won't treat APS unless a person experiences a clot. The treatment is blood thinners. Sometimes, people with the Lupus Anticoagulant will be treated prior to a clot, but not always. I was told to take an aspirin a day as a preventative, but research has not proven that aspirin prevents clots in those with APS.

Sometimes, with treatment, symptoms (such as migraines) will go away. I used to have a really good article about APS and ITP, but lost it. I'll try to find it later. It stated that the body may purposely lower platelet counts when APS is present as a sort of defense to prevent clots.

No I didn't ask which antibody. My hemo thought I was a bit nuts in asking to be tested since APLAS is a clotting issuse and ITP is a bleeding issue. But she trusts me and tested me like I asked. She said she din't think anything would come of it and was not prepared for these results and has to do some further researching before she fully understands what this means. She also told me that she was already in contact with a top notch specialist at the Medical University of South Carolina, MUSC, (i'm in Charleston, SC) so that she would like for me to see as well if I wanted. I said yes. So that's where I am at this point. The migraine are still a dibilating issue and my new neuroligist is not winning any brownie points since Ive had to bad reactions to the last to drugs he's tried to place me on to alievate some of the migraine pain. It's a hugh learning curve with new doctors, and I'm exhausted.

I had a problem with the diagnosis too. I kept asking my hemo to test me every time I went, and he said I couldn't have APS because my counts "went too low". I didn't see what that had to do with it. Eventually, I asked my Rheumatologist to test me and he did. It came back positive.

Then I got passed back and forth between the Hemo and the Rheumatologist. They each kept telling me it was the other persons job to monitor it. To me, it's a blood issue, but it's also common with Lupus (which I have), and neither wanted to deal with it. I was finally sent to another Hemo who pretty much saw me, suggested aspirin, and that was it. This was six years ago and I never saw him again.

I'm surprised your Hemo doesn't know what it is. Mine did, but flat out said it was not his specialty, so he thought I should see someone else. Maybe your neuro is familiar with it since it can affect the brain. I used to get really sharp, frequent pains in my head, but it stopped when I began the aspirin.

I still have to look for that article.

My hemo did know about APLAS, but didn't know too much about the link between ITP and APLAS. She is mostly hemo/oncology doctor, so like yours, it is not her specialty. My counts are below 40K as my standard norm. They dip intot he single digits. I am not a bleeder and have had my platelets characterized as abnormally large and very sticky. I do have spontaneous bruising but not large bruises and some patichia most on the thighs. i had a bone marrow biopsy and was tested for lupus. Both test came back with favorable results meaning that I didn't have lupus and my bone marrow was producing platletes in a normal fashion. I had a splenctomy, but that was not sucessful. My Mri's and CT scan have both shown my brain conditions consistant with that of migrains, so I do believe that that doc at MUSC will be a positive expeience that may shead some light on the situation.

I too get sharp and frequent pains in my head on my right side. My neuro calls thing pings. I have heard of asprin being as treatment. This is one article that I look through: medicine.ucsf.edu/education/resed/Chiefs_cover_sheets/aplas_itp.pdf
and this is another: bloodjournal.hematologylibrary.org/content/113/26/6511.full

I have chronic migraines and ITP. I have more symptoms of vertigo and nausea, lights bother me but headache not severe. I have been doing great on 20 mg daily of amitryptiline(not sure if spelled right) it is generic elavil


Dru

Dru: tried to take amatriptalin (sp) but I had a reaction to the meds. Topamax has worked for me in the past and is working for me now. My migraines are getting easier.

Sandi: I tested Positive for IGM antibody. I am not sure which one that is, but today is my research day. In the next couple of hours, I will know more about it than I probably want to know.

I had to do research in small bits too. Knowing too much was scary. I had nightmares about APS, which was harder for me to deal with than the ITP diagnosis.

I got lost in the research. I'm almost confused at this point. I don't believe that It's the Lupus antibody, IGM is bcell antibody? which is the prevelant in your body? if you test positive for one of the antibodies then you can be considered positive for APLAS? ITP can be one of the first and only manifestation of APLAS and it can also be a misdiagnosis. I have alot more questions now.

Migraine and ITP are and indication for testing for APLAS. This was good information from this forum for me to use in my doctors appts to folow-up with. Now I have more questions and new docotr's apptments. I have migraines for 10 plus years and ITP for about the same and now this, APLAS....hmmmm

I have always had this? Is my body changing with age? Did the severity and the frequency of the migraines evolve because my body is changing? Are these due to hormones bcause of my age, 39, and because I had a baby last year? These are now questions that, I am researching and planning to have my doctors evaluate.

Just as I thought I had found some peace with life with ITP, change sets in....

The list below will help you to understand the IgM part of this and how it relates to the 3 types of antibodies. Chances are, you've had the antibodies for a long time. I did too, and this is how I know.

When I got married in 1982, we had to have a test for syphilis which was required back then. I tested positive, even though it wasn't possible to have it. The test was a VDRL. They found out years later that people could have a false positive VDRL and if they did, it was part of the blood work that can be found in APS. They also discovered that many of those people eventually developed Lupus. I was 19 when I had that test. I was 35 when I was diagnosed with ITP and 44 when I was diagnosed with Lupus. I had weird blood work way back then, but didn't actually develop the disorders until years later. Some trigger came along, I guess.

A lot of women with APS antibodies have miscarriages. I didn't. I had three healthy pregnancies, which is a good sign that clotting hasn't been a factor all of those years. Since the antibodies can come and go, there is no reason to think that once I knew I had Anticardiolipin antibodies, I would start clotting. It took me a while to realize that. The same goes for you. However, the fact that you have migraines also adds into the mix.

What is frustrating to me is that people with ITP are not routinely checked for APS, even though articles state that 33% of people with ITP also have APS antibodies. Most articles state that the treatments for ITP should not change if one also has APS. I don't understand how that can be since both TPO's and splenectomies raise the risk of blood clots even without APS. I've been on the PDSA Forum since 1998 and have never seen as many clotting episodes as I have in the last few years. These are young people too.

Your doctors will most likely not have answers to your questions. This is not because they are uninformed; it's because they can't possibly know how long you've had it or what caused it. I can tell you that having the antibodies does not mean you have APS. APS is classified as having at least one of the antibodies and a clotting episode. Actually, a person should test positive twice in a six week period to be considered to hsve the antibody. I don't think this is something that you should worry about a lot, but it's good to be aware of it and see what the doctor says.


Physicians use a combination of clinical symptoms (see above) and laboratory tests to diagnose APS. The common blood tests for antiphospholipid antibodies are as follows:

1. Anticardiolipin antibodies (IgG, IgM, and IgA)
2. Lupus anticoagulant – a panel of blood clotting tests that may include the dilute Russel Viper venom time (dRVVT), lupus aPTT, mixing studies, and hex phase phospholipid test, platelet neutralization procedure
3. Antibodies to b2-glycoprotein I (IgG, IgM, IgA)

Panels of tests for antibodies to phospholipids other than cardiolipin are available but have not undergone the rigorous international standardization efforts applied to anticardiolipin assays. A number of experts in the field question the usefulness of these panels, which may be quite expensive.

www.apsfa.org/aps.htm#6



www.nhlbi.nih.gov/health/health-topics/topics/aps/

www.genome.gov/17516396

I'm sorting through all the new information. Thank you for the links. I am over whelmed but peacefully so. I guess 10 years with the uncetainty of ITP, I have learned to take this 1 day at a time. My cage has been rattled and my anxiety has peaked but I am settling quicker than I have in past years, I know how to reasearch better and I know how to reach out better. So please keep the info coming. ALL is apprecieated and I am sharing what is brought to me here, so thank you very much!

Pshayk

The magnesium is a good idea and won't hurt your counts. My neuro showed me a study that had good results from 500mg magnesium per day for migraine prevention.

Dru

thanks Dru. I have read alot on magnesium as well as COQ10 and B2. They also help. I have only had 4 migrains this month which is quite an improvement from the past 10 month in which I was having more than 12 or so and what started this forume discussion that has led to the APLAS investigation, testing, and now indepth research on my part due to testing postive for one of the antibodies...

Yes this forum is so helpful. I had not been able to check in too often over the past year as going on a computer was giving me migraines. I seem to be over that now with meds.

My daughter hasn't had bw for 2 months. Due to get it done June 29th. Her last count was 103, where its been for awhile. Today, she started complaining at church that music was too loud, lights hurting her eyes,pain behind her eyes, wanted to lay down, feeling hot, not feeling good. After 20-30 minutes, we left. She threw up just as we walked outside. She's asleep now. She's never had a migraine. She had as diagnosed this year by discovering low platelet count in her medical records from bw for other issues. Low platelet count, as far as we can track, goes back about 1 1/2 to 2 yrs ago. Pediatrician caught it. Seeing a hematologist but told not too worry w her count at 103. Should I have her tested again sooner than waiting till June 29th?

Does she have any bruises, bleeding gum, bloody nose? If not, then her platelet count is probably okay.

When as her count 103k?

None of those symptoms.

March 2015

No.

I have ITP with an average platelet count in the teens. I have had trouble with migranes for the past 5 years but I have recently noticed that my migraines get worse and more frequent when my platelet counts drop. Has anyone else noticed this happen?

No, but a few others over the years have had that problem.

I don't have migraines, but for the first time have vertigo and headache. My platelets are 20,000. Have had ITP for 2years but the vertigo is new. Does anyone else experience vertigo an dizziness when counts are low?
New to this community. Glad to find you.
J

I did. It was very odd and I have no explanation for it. It makes no sense as far as an ITP symptom. I would get dizzy at times and sometimes the room would tilt when I was sitting down. Only when counts were really low though.

J - It is possible that this is autoimmune: people who have one autoimmune disorder are more likely to have others. There are autoimmune conditions that affect the inner ear. I got lots of interesting hits when I googled: autoimmune vertigo. Also: autoimmune inner ear.