The autoimmune condition called Antiphospholipid Syndrome (APS) is one of many possible contributing factors for both migraines and anxiety. I came across this condition when researching the links between migraine and anxiety in preparation for my interview with Erin Knight, one of the hosts of The Chronic Headache & Migraine Summit. This is one of the reasons I love presenting because I get to learn so much too!
Antiphospholipid syndrome occurs when your immune system attacks some of the normal proteins in your blood. It can cause blood clots in your arteries or veins. And it can cause pregnancy complications, such as miscarriage and stillbirth. (Source: Mayo Clinic)
I share some highlights from a 2015 paper: Antiphospholipid antibodies as biomarkers in psychiatry
- Antiphospholipid syndrome (APS) has been implicated in a range of neuropsychiatric presentations
- The link between depression, stroke, and cardiovascular disease could be explained in at least some patients by the presence of aPL antibodies
- Approximately one in five (20%) strokes in individuals under the age of 45 years are associated with APS
- Migraine is one of the most commonly observed symptoms in patients with APS
- aPL antibodies are often found to show low or moderately positive levels which makes this syndrome a diagnostic dilemma in psychiatry. The St. Thomas ‘alternative criteria’ for APS may be a useful clinical tool for psychiatrists. These criteria include cognitive impairment, affective disorders [like depression and anxiety], headaches [or migraines], and livedo reticularis, with improvement after aspirin treatment
In case you are not familiar with livedo reticularis, it is a mottled purplish discoloration of the skin. Having this skin condition does not mean you have APS because livedo reticularis can be a normal condition that is simply more obvious when you are exposed to the cold. It can also be an indicator of impaired circulation.
Phospholipids are a class of lipids that are a major component of all cell membranes and also facilitate neurotransmitters communication so this condition affects serotonin, dopamine, glutamate and GABA levels.
Working with my client’s doctor, I would recommend an autoimmune dietary approach and trials of the respective amino acids to support low serotonin, low GABA (anxiety is common with migraine sufferers) and low dopamine.
We also discuss how effective gluten removal can be for my clients with anxiety and migraines and find it to be a common underlying factor (whether it’s celiac disease or gluten sensitivity). Since gluten is always an important factor for autoimmunity it should always be explored if APS has been diagnosed or is suspected.
We also cover low serotonin as one possible cause of migraines and the how to do a trial of tryptophan (instead of SSRIs). Using tryptophan also addresses the low serotonin that often occurs with APS and is one possible contributing cause of the anxiety, depression, insomnia and migraines.
Hosts of The Chronic Headache & Migraine Summit, Erin Knight, Corey Schuler and Marta Taylor, are familiar with headache pain and migraines; they’ve all experienced severe headache problems. They found functional medicine solutions, which they now share in their health practices each day.
I have primary APS, specifically anticardiolipin, IgM. My research found cardiolipin is almost exclusively found in the inner mitochondrial membrane and 95% of chronic fatigue sufferers have antibodies to cardiolipin. I have researched mitochondrial and cell membrane repair products no so far they all contain phospholipids. I would love to know if these phospholipid products will increase the antibodies and throw me into an increased autoimmune situation or if they would repair the damage the cardiolipin antibodies have already done. I do not have migraines, but do have several neurological symptoms during APs flares.
Laurie
I have very little expertise in APS but I’m sure a functional medicine practitioner knowledgeable about this condition could help. Which products and which phospholipids?
I’m also curious if an autoimmune Paleo-type dietary approach has helped you at all? And what you have found to trigger the flares and the symptoms you experience?
Thanks for sharing the information about CFS and anticardiolipin – I was not aware of this. Sharing this study for other blog readers: Anticardiolipin antibodies in the sera of patients with diagnosed chronic fatigue syndrome – “Examination of anticardiolipin antibodies (ACAs) in the sera of patients clinically diagnosed with chronic fatigue syndrome (CFS) using an enzyme-linked immunoassay procedure demonstrated the presence of immunoglobulin M isotypes in 95% of CFS serum samples tested. The presence of immunoglobulin G and immunoglobulin A isotypes were also detected in a subset of the samples.” https://www.ncbi.nlm.nih.gov/pubmed/19623655
Thank you Trudy,
So far I’ve consulted two functional practitioners and several others online with no luck. It seems this is such a specific question and maybe specific condition it just hasn’t been addressed yet and they can’t answer. I take milk thistle with phosphatydcholine and I’m ok, however ; research I found linked the cardiolipin with phosphatydlserine types. So, I’m shying away from any serine products. I can’t recall specific product names right now, but someone with antiphospholipid antibodies should always check labels for phospholipids. When I tried to switch from fish oil to krill oil, I went into a full blown flare within a couple days. When I checked the label, the krill oil contained phospholipids and the fish oil did not. So, my guess is repair products with phospholipids will worsen me. I am just not wanting to give up hope on a repair product.
I have not been able to isolate the specific triggers. I suspect food and stress in general. I have tried Paleo and it definitely helps.. I also feel absolutely terrific with Ketogenic, so the fats may be repairing something or offsetting the damage.
Thank you so much for looking into this. Blessings for the upcoming summit. I’m sure it will help so many of us.
Laurie
Wonderful to hear about the benefits of the Paleo and ketogenic diets for you! It sounds like you have the answers on the effects of phosphatidylserine but I’ll be sure to come back and share if I learn anything new or specific.
Laurie
Regarding phosphatidylserine …just sharing this paper published in May 2017: Laboratory Diagnostics of Antiphospholipid Syndrome (https://www.ncbi.nlm.nih.gov/pubmed/28470652) mentions this “Promising but undetermined results come also from the determination of antibodies directed to phosphatidylserine/prothrombin complex.”
P.S. Trudy….I am very suspicious of a link between the formation of these antibodies with Rhogam shots in pregnancy. I am RHneg and have had four rhogam shots. Lots of my symptoms are the same as RH disease in a child, but I’ve found nothing about this in a mother. Of course, the shot is the better of two outcomes. When researching this question, I found a high number of APS people are rhneg. Not sure how many of those have had the shot. Perhaps it is just the rhneg without the shot that predisposes to APS.
Laurie
This connection is new to me but I’ll keep my eyes and ears open
Hi Laurie. I also have primary APS. My practitioner certainly thinks that the products you mentioned are contraindicated in APS, though we haven’t had a detailed conversation as to the whys and wherefores. I’ve started following the Wahls protocol as far as diet is concerned, as that is aimed at healing the mitochondria, so I’m hoping that will help. I suffer from debilitating fatigue, anxiety, depression and migraines, so I found this article very interesting. My rheumatologist is part of a team researching the fatigue component of APS.
Wow! This is terrific news Susie. Thank you! I think I’ve heard of Walls relating to MS. Since I have neurological symptoms mimicking MS, that may be a very good suggestion for me. I’m not known for being the most energetic, but I’m not having debilitating fatigue. I think the ketogenic is helping with energy too.
Susie
Thanks for sharing. I’m a big fan of the Wahls protocol and even her ketogenic version. I hope you are also working with your practitioner on doing trials of the individual amino acids such as GABA and tryptophan for your anxiety and depression. These amino acids can also help migraines in many instances. GABA and serotonin are common deficiencies in APS as are dopamine (low dopamine can cause focus issues and fatigue as well as depression) and endorphins (low levels cause pain and “weepy” depression)
My blog and book “The Antianxiety Food Solution” has tons of information on the amino acids and I cover tryptophan trials in my interview with Erin. She also shares what she has learned about the serotonin migraine connection.
Hello
For those of us who dont know how do you find out if you have APS?? Many thanks, Shannon
Shannon
This page has some information under the How are you diagnosed FAQ http://www.aps-support.org.uk/self-help/faqs.php
“There are three different tests used to diagnose APS and they are all looking for antiphospholipid antibodies (aPL):
• Anticardiolipin antibodies (aCL)
• Lupus anticoagulant (LA)
• Anti-beta2-glycoprotein-1 (anti-B2GP1)
The reason for the three tests is that they measure aPL in different ways which means that one test alone could miss the diagnosis. The LA is a very confusing name and is not a test for lupus.
If any of the tests are positive, it will be necessary to repeat them again because harmless aPL can be detected in the blood for brief periods in association with a wide variety of infections such as chickenpox, and certain drugs including antibiotics and some blood pressure tablets. For this reason, the tests should be repeated after 6-12 weeks.”
This paper published in May 2017: Laboratory Diagnostics of Antiphospholipid Syndrome (https://www.ncbi.nlm.nih.gov/pubmed/28470652), confirms the triple positivity testing. It also mentions this “Promising but undetermined results come also from the determination of antibodies directed to phosphatidylserine/prothrombin complex.”
They also say this: “Interpretation of laboratory profile in APS is challenging, and the collaboration between clinical pathologists and clinicians is highly desirable.” This tells me that working with someone with experience in this area would be best.
Also for diagnosis …”APS is usually diagnosed from a combination of a positive blood test and symptoms. If you are under 50 and have suffered a thrombosis causing a deep vein thrombosis (DVT) or a pulmonary embolism (PE), or have had a transient ischemic attack (TIA), stroke or heart attack, particularly more than once, or have had more than one miscarriage or late pregnancy loss you should discuss with your doctor whether you need the blood tests.” (from here: http://www.aps-support.org.uk/about-aps/how-is-it-diagnosed.php)
Susie
Regarding phosphatidylserine …just sharing this paper published in May 2017: Laboratory Diagnostics of Antiphospholipid Syndrome (https://www.ncbi.nlm.nih.gov/pubmed/28470652) mentions this “Promising but undetermined results come also from the determination of antibodies directed to phosphatidylserine/prothrombin complex.”
Given the shared symptoms between APS and CFS doesn’t that mean that the 95% of CFS sufferers who show anticardiolipin antibodies actuall have APS not CFS? They should therefore be treated as APS sufferers and see a consultant in case they need anticoagulation
Good question Judith! I would love to know too. in my particular case I do not have CFS. But, if antibodies are attacking cell membranes anywhere in the body, perhaps the symptoms present in different areas depending on the person. Mine are mainly neurological not fatigue. I would love to know more about this.
Laurie, yes we do often have different symptoms from each other and some are indeed neurological. one of my friends suffers very badly from the neurological ones. Sorry, I just realised I haven’t told you that I was diagnosed with APS almost 16 years ago. The best internet site is usually thought of as the APS Support UK one which has lots of basic details on it and it’s well written. You might find it interesting and help you decide if you need to be tested.
Judith
Yes, as with any condition, symptoms can differ from person to person.
Thanks for sharing the APS Support UK site (sharing the link here for other blog readers http://www.aps-support.org.uk/self-help/faqs.php). It has really good medical information for testing and understanding the condition but unfortunately is lacking in dietary advice with nothing about Paleo/AIP or ketogenic diets. It’s also very light on the mental health aspects despite the fact that this paper (in the above blog post) was published in 2015. They do say reduce stress and consider CBT but offer none of the nutritional support for anxiety and depression. I would love to see them include some of these functional medicine aspects that we know are so powerful!
There is also The APS Foundation of America (http://www.apsfa.org/aps.htm) with similar mainstream medical information and some other resources.
Absolutely Judith but I suspect many are not even aware of it!
Dietary advice that you mention is probably not included as it has not been medically proved to help APS. It may help some people but others have said it didn’t help them at all. The charity has to be careful what it posts.
Judith
I agree they have to be careful what they share but there is plenty of research on lupus and other autoimmune conditions and some of these dietary approaches so at least mentioning these connections would be helpful. Most of the research is with celiac disease but extrapolations can be made based on clinical results we see. Here is one study – All disease begins in the gut: Celiac disease co-existence with SLE https://www.ncbi.nlm.nih.gov/pubmed/27295421
I also just posted a long response to Laurie on my thoughts about diet and why some are saying dietary changes didn’t help.
Regarding those who feel like the wahls, paleo or ketogenic diets are not working for them. It is so important to realize there is an adaptation period of several days to several weeks during which you will feel much worse as your body adapts. But, this is not an indication you are worse or that the diets are not working. After adapting which is usually a short time, you feel notably better. These diets are so healthy for such a wide range of people and disorders. Please stick with it at least a month to get a true measure whether it works for you.
Laurie
Thanks for adding this about these diets. I agree on the adaptation period as the body gets into homeostasis. Die-off of candida and other bugs can also cause symptoms.
The dietary changes do also need to be done well and based on each person’s biochemistry and I would never discount these dietary approaches until I’ve seen a food diary of someone who said it didn’t help or they got worse. Some examples: 1) gluten-free diet with loads of gluten-free processed foods; 2) Paleo diet with loads of leafy greens when oxalates are an issue; 3) Paleo diet with baked goods using nut flours like almond flour are also an issue with oxalates; 4) Ketogenic diet when fat digestion is an issue or there are bile issues (often easily addressed with enzymes and bile support nutrients). Salicylates (in many fruits) and glutamates (in bone broths and fermented veggies) can be an issue for some people too.
And with any dietary change addressing any nutritional deficiencies and leaky gut would be key too i.e. it’s a comprehensive functional medicine/functional nutrition approach.
What an excellent question Laurie! Just putting pieces together with my own APS daignosed via recurrent miscarriage. Can you describe your version of an APS flare? Thank you All!
Hi Karen, my APS was actually diagnosed during my third pregnancy, however I experienced flares of it many years prior to diagnosis. The do,I ant symptoms are numbness and tingling in my hands and feet. I become unsteady on my feet and clumsy. I drop things frequently, I lose dexterity in my fingers and have a lot of difficulty with fine motor tasks. Mentally, I am very forgetful. Feeling like I’m walking in circles not remembering what I was attempting to do. I get easily overwhelmed with simple tasks I usually have no trouble accomplishing. I will become vacant or spacey. Unable to focus. When the episodes first started they were the same symptoms, but milder, infrequent t and lasting only a couple days. By the time of diagnosis, about 35 hrs old, they were severe and lasting a month or two before subsiding. They ruled out all neurological disorders and autoimmune disorders. In pregnancy, an aspirin was all that was needed. They told me mine was IgM and the more risk in pregnancy was IgG.
Are there any of these aminos, natural supplements that would stimulate appetite and help sleep. Following a surgery I’ve lost interest in food, nothing tastes good and I’m losing weight – don’t need to, skinny already. Plus I feel weaker.
Sherril
Low appetite and poor sense of taste (and smell) are classic signs of low zinc. It’s a common deficiency but is often low after surgery due to the increased need for immune support and because of the “stress of surgery” and post-healing needs. Zinc is also needed to make serotonin and GABA which often help with sleep. Many of my clients find the amino acids tryptophan and GABA help sleep too.
My name is Melinda. I have fibromyalgia and my left leg is further aggrivated from a break in the growing plate of my knee when I was struck by a car at the age of seven. I have digestive problems that were misdiagnosed as crohns which led to pancreatitis. I suffer from migraines, insomnia and PTSD. I AM SICK OF THESE PRESCRIPTIONS THAT DRS keep giving me. I am on SSI because there is no way I can work. I would very much like to be part of your studies involving cannabis. I very much would like to use your product.
Sincerely yours,
Melinda
Melinda
I’m sorry to hear – hope you have signed up for the migraine summit – there will be a wealth of information shared!
In the meantime here is a blog on 5-HTP and tryptophan for fibromyalgia, anxiety, insomnia and pain https://www.everywomanover29.com/blog/fibromyalgia-tryptophan-5-htp-for-anxiety-depression-pain-and-insomnia/ Migraines can also often be due to low serotonin. Be sure to work with your doctor on a taper protocol and be aware of the possibility of serotonin syndrome – more on that here https://www.everywomanover29.com/blog/taper-from-antidepressant-tryptophan-amino-acids/
(PS I edited out your phone number because these comments are visible to the public)
Trudy, I came across a doctor one time that made Thyrogold and he was convinced fibromyalgia had a thyroid component and many patients experienced relief when taking thyroid supplements. Has this come up at all in your patients?
Laurie
Yes there are often overlaps with thyroid conditions and fibromyalgia. This new study addresses prevalence https://www.ncbi.nlm.nih.gov/pubmed/28176037 Addressing thyroid health is important no matter what other conditions a person has.
We will be travelling during the first days of this seminar. Is it possible to read the discussions and comments after the time? How flexible is access to the course?
Thanks
Fiona
The comments sections of each speaker is available throughout the summit. The interviews air for a 24 hour period at no charge and then there are often replays at the end of the summit for a short time. I’m not sure what you mean by reading the discussions – if you mean written transcripts they are available for purchase, together with all the recordings should you want to listen/read at your leisure and keep for your learning library
The autoimmune disease Antiphospholipid Syndrome is now referred to as Hughes Syndrome. See: Hughes-Syndrome.org
Linda
Thanks but that link http://www.Hughes-Syndrome.org actually redirects to http://www.aps-support.org.uk and they say this about the condition “Antiphospholipid syndrome (APS), sometimes known as Hughes syndrome and, more colloquially, as ‘sticky blood’, is an autoimmune disease which affects the blood and its ability to clot.
I find this all quite fascinating. I’ve suffered migraines for years and had many neurological symptoms before eventually being told I had APS. I also have CFS and FMS. I find a Antiphospholipid Syndrome Forum the best source of information because they have lots of information written by Prof Hughes who diagnosed Hughes Syndrome (APS). He writes monthly blogs and often talks about how the Thyroid is another condition which is part of a trio that people can have, along with Sjogrens Syndrome. He puts the fatigue down to those conditions. The Forum can be found on the HealthUnlocked platform called Sticky Blood – Hughes Syndrome Support and they are also the official support Forum for his new charity called The Graham Hughes International Charity, known as GHIC. Their are interesting conversations on diet do probably worth a visit. This study is certainly an interesting perspective.
Emma
Thanks for sharing this excellent resource! I took a quick look and will look into some diet threads and some of the blogs written by Professor Hughes. Sharing the link for other blog readers https://healthunlocked.com/hughes-syndrome
WOW! Felt like I slipped down the rabbit hole for a few minutes. My symptoms are more neurological, I have noticed livedo reticularis, especially after getting out of the IR sauna. My daughter has also noticed this on her legs (she’s a nurse, was told it’s related to blood pressure). Last year I did a Bio impedance analyzer test with a chiropractor which showed weak cell membrane health. Wondering if this connected to APS. Is there any genetic connection to APS? Strokes and heart attacks are big in my family.
Strokes and pulmonary embolism run in mine Jaci. I expect our ancestors probably had antibodies.