Help : This is hard to ask but with my... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Greenmil3 profile image
Greenmil3

This is hard to ask but with my ongoing mental issues due to my Cerebral APS I have become an even more angry and aggressive person and am putting my marriage at risk. I don’t know where to turn for help friends I talk to do not understand how I feel. My mental faculty is deteriorating so rapidly my memory my cognitive function my problem solving etc etc.

Do you think counselling would be worth a go of do you think I need more help than that. I am getting to my whits end and am driving my wife crazy

28 Replies
MaryF profile image
MaryFAdministrator

You poor thing, I really feel for you, and it is good that you are reaching out for help. It is important that you find the right person qualified to help you.

1. bacp.co.uk/search/Therapists and also 2. bps.org.uk/

The other thing is to also check with your main Hughes Syndrome/APS specialist to make sure all your levels of things are ok, to make sure that nothing like vitamin D, B12 Folate Ferritin and Thyroid function is all working properly, to make sure nothing else is making things worse for you. Low levels of these things can make cognition very difficult. If your consultant or GP does no feel they want to test, some of us order our own tests, and I can list those for you. Learning to meditate can also help, to bring on calmness and create some mental space for yourself. Some people find Mindfulness useful as a strategy, but of course there are many other forms. MaryF

I am no doctor. I am just sharing my experience. Your cerebral APS is like mine, no strokes but a lot of white matter hyperintensities combined with an obvious cognitive decline. Those white matter lesions are probably related to microangiopathic changes ( small vessel disease). Although warfarin is recommended in these APS-related cases it does not help much with small vessels occlusions or changes in the endothelium. My doctor and I added cilostazol to the warfarin therapy. It is known that cilostazol improves blood flow in the brain, endothelial function, and cognition. It is a vasodilator, and a weaker antiplatelet than aspirin. There is less risk for hemorrhages then. The drug is not well known in the western world but there is a lot of research done supporting its use for mild cognitive impairment, for example:

pubmed.ncbi.nlm.nih.gov/257....

onlinelibrary.wiley.com/doi...

I just started it so I can not tell whether it works but we do not have that many options. The combination with warfarin has proven to be safe in the past.

Good luck to you!

Greenmil3 profile image
Greenmil3 in reply to Or81

Thanks for that I will look into it I’m on Warfarin and statins for the affects on the endothelium cells but the cilostazol sounds interesting thanks I really wish that Cerebral APS was more recognised as everyone thinks it’s typical brain fog but I literally have such little memory left and have lesions on my brain stem which has all sorts of lovely interactions throughout my body

Or81 profile image
Or81 in reply to Greenmil3

If your antiphospholipid antibodies are persistently high, in our scenario, immunosuppression is already being considered, and there are several case reports showing remission of the white matter hyperintensities after proper treatment. However, for me this would be the last shot due to the side effects of the therapy. Please look at this recent and nice review on the topic. There are other reports out there.

pubmed.ncbi.nlm.nih.gov/318...

Greenmil3 profile image
Greenmil3 in reply to Or81

Thanks so much for all your advice

Or81 profile image
Or81 in reply to Greenmil3

My pleasure! We are here to support each other.

KellyInTexas profile image
KellyInTexasAdministrator in reply to Or81

Love this.

MaryF profile image
MaryFAdministrator in reply to KellyInTexas

Me too. Mx

KellyInTexas profile image
KellyInTexasAdministrator in reply to Or81

I’m on Rituximab infusions 1000mg / ml every 12 weeks - am reporting that unfortunately it is not helping. Cerebral APS symptoms not improving. Cog decline not improving. Large DVT’s are only controlled by a combination of a very high inr ( target range 5.8- 6.3 with the goal being 6.0 ) and LMWH boosters if symptomatic of low inr at varying mg doses at varying inr below 5.0

( I prove out clots by scans at high inr ranges. I have failed other therapies.)

The next trial will be IVIG after pandemic settles.

Or81 profile image
Or81 in reply to KellyInTexas

Hello Kelly. In the case of Greenmil3 and I, we are not having any thrombotic event. No clots. It is indeed a non-thrombotic manifestation of the disease which is more difficult to treat. The endothelium gets affected by the action of the antibodies. It seems that we would benefit from drugs that could improve the endothelial function and lower the levels of the antiphospholipid antibodies. With this kind of small vessel disease warfarin or anticoagulants in general are not very beneficial. That is why some people here complain of getting more lesions or a continuous cognitive decline despite therapy with warfarin. In fact, some people develop the non-thrombotic manifestation of APS while on anticoagulants.

KellyInTexas profile image
KellyInTexasAdministrator in reply to Or81

Yes, I have both. Cerebral manifestation and DVT’s . I’m also developing more neurological manifestation we were hoping the rituximab would help. ( by bringing down the APS antibodies, it would lessen the epithelium inflammation.)

Dr Jason Scott Knight of the university of Michigan in the states is leading some understanding ( fingers crossed) in this.

drugtargetreview.com/news/8...

Or81 profile image
Or81 in reply to KellyInTexas

Do you have deep white matter brain hyperintensities suggestive of small vessel disease? If you do, you might benefit from the results of this small clinical trial:

thelancet.com/journals/ecli...

One of the therapies used in this cohort of patients proved to reduce this type of small vessel damage probably by improvement of the endothelial function. Larger clinical trials have been done in Asia suggesting the same conclusion.

If you do not have deep white matter brain lesions it might be that some of your symptoms are more related to Lupus rather than to the presence of antiphospholipid antibodies. Of course, it is my modest opinion. The only thing that we can assure 100% is that we are in the presence of a very complex disease that can manifest in many ways. I am so happy that I found this site in which we can share our experiences ! Xxx

KellyInTexas profile image
KellyInTexasAdministrator in reply to Or81

I am not showing lasting white matter detection lesions on scans.

I have on my list from my neurologist “ Cerebral venous sinus thrombosis”.

So... not sure. I think the clots are very small and clear quickly?

The epilepsy is always in the right temporal lobe. He told me it was micro clotting.

I’m honestly very confused about it.

I know some patients have an over lap of DVT’s and cerebral small vessel disease. And larger vessel clotting in brain also.

I also have been prescribed nitro for micro clotting in small vessels in heart. Horrific chest pain and threw a bad EKG and was hospitalized. Heart was perfect! Low Inr...

Stupid APS...

Kelly I don’t really know how you keep going I am like OR81 I have persistent deep brain including brain stem white matter lesions but never a DVT.

Or81 profile image
Or81 in reply to KellyInTexas

You are so strong! And here you are, trying to help others !

Greenmil3 profile image
Greenmil3 in reply to Or81

Thanks but we all help where we can and you have given me plenty of help to share around

Or81 profile image
Or81 in reply to Greenmil3

I can tell you that cilostazol is lifting my brain fog. For the first time in almost two years I am having hours of clear thinking and I am on a low dose of the drug. I am feeling a bit optimistic about the future for the first time in a while.

KellyInTexas profile image
KellyInTexasAdministrator

I absolutely admire you for your introspection.

I know that admiration is not what you are asking for, but you are getting it from me anyway. ( so there’s that- if nothing else. )

I’m in Texas.... as you know. I don’t know what resources to extend to you or link you to in the UK.

However, I do think you need to let your wife know that you are aware you feel you are out of sorts with this disease. Yes, there is neuro lupus- and I think it’s tied to those lupus cases that have APS associated.

“Neuro psychiatric” symptoms include migraines, short term memory loss, and depression.

Not such a fun package deal.

I wonder, is it possible you are having small seizures also? I have right temporal lobe epilepsy. Have you been checked? It can cause “fight or flight” feelings of anxiety.

These are questions for the neurologist.

Please put a call in right away to your GP, or preferably your neurologist. Let the neurologist answer these questions for you. I’ve learned when it comes to the brain- subtle clues and nuances can paint an entire story. Only the neurologist can see the colors and interpret the paining as a whole. ( I’ve been astounded by this, actually!)

Maybe you need an antidepressant . Maybe a mild stimulant to help you focus. Maybe a combination? Our daughter ( age 29) was put on pro vigil - for word finding ability and focus ( she’s a PhD researcher ) and Wellbutrin ( does not promote clotting ) for fatigue along with hydroxychloroquine. ( Early lupus, and the usual mixed connective tissue mixes.) She got help right away.

She is having debilitating migraines now. She’s taking injections of Aimovig monthly like me and it is helping.

Our son ( 19) experiencing much the same and on similar medications- positive APS antibodies. Propanalol - migraine preventative and aspirin only at this point. Low mood. Aspergers/ high functioning,

All part of the APS/ lupus spectrum.

Double hard when it’s cerebral. Bring in those big docs with the big meds- and rest yourself in your big heart, and ours. ❤️

MaryF profile image
MaryFAdministrator in reply to KellyInTexas

Great advice. MaryF

Kelly

Am now only under Prof Hunt at Guys and St Thomas as Dr Paul Holmes said I was interesting but he couldn’t help any further and prof Hunt has a thing about Cerebral APS apparently as with the Pandemic only chatted on phone so far!

And although I don’t need admiration I am only human so it’s always welcome!

I am going to find some counselling and I keep trying to explain how my situation is affecting me but I think if you don’t or haven’t suffered from anything similar then it’s hard to understand or comprehend!

I will be taking the great advice I have received from OR81 and will talk about alternative drug therapies at my next appointment.

On a bridging plan at the moment so off warfarin and jabbing two injections each evening!

Thanks Again

Lettie999 profile image
Lettie999 in reply to Greenmil3

Definitely give cognitive behavioural therapy a try, my immune condition causes extreme anxiety when I am flaring you which makes me irritable, snappy and generally unpleasant. The rheumatologist thinks the inflammation causes this anxiety issue as it’s common with their patients.

CBT enabled me to identify when the anxiety was starting way before the explosion and gave me ‘tools’ to prevent and manage my outbursts. You have to through yourself into this process for it to work.

Also the big thing my counsellor used to focus on in each session was ‘what have you don’t to be kind to yourself this week?’. It’s such an important point, as autoimmune patients we focus on getting through the day, week and month but what do we do that is a treat just for us? Taking our meds, eating right, collapsing for a rest is NOT being kind but our survival. Just because you feel you are being difficult doesn’t mean you don’t deserve a hug, a nice meal, a long bath. It’s cheesy I know but you are not a bad man, don’t beast yourself.

Also as KellyInTexas said let your wife know how you are feeling and the fact you want to get help, she will be relieved to know it isn’t something she is doing wrong and they you want to change, you may find once you have been open with her some of the anxiety you have about your condition eases and you are less angry.

Finally if when speaking to your GP/consultant they recommend that you take an antidepressant don’t be offended or see it is a weakness on your part, they really helped me stay calmer, I can still feel happy, sad, angry etc but I do not get extreme anxiety or anger that I am unable to control, it also stopped me being so moody during my monthly cycle.

Good luck to you, you will sort this problem

I hope you can find some help with your APS.

I have come across the term cerebral aps quite a few times but can’t seem to find anything about that diagnosis online. I can find things about the cerebral symptoms but not that particular diagnosis and would really like to know more about it. I’m having so much trouble with my cognitive functions and have lesions on my brain scans. But I’ve never had a full stroke, just things that appear to be mild TIAs. I’ve been diagnosed with aps for 20 years, the lesions on my scan (when there were only 2 of them) were thought to be ischaemic and were used as the clinical evidence for my diagnosis. I’m on warfarin and clopidogrel. No one believes how bad my cognitive problems are.

Your post has made me wonder if I have cerebral aps and I’m wondering if you would mind telling me more about it and how you came to be diagnosed. Or can you tell me where I can read about it? Please don’t do this if it would upset you or affect you adversely in any way.

Judi

Greenmil3 profile image
Greenmil3 in reply to Jumper99

Judi

I was diagnosed by Professor D’Cruz as Guys and St Thomas Lupus clinic. The rest of the research was carried out by me through numerous medical reports and papers but try and get to see Prof D’Cruz or Prof Hunt in Harmotology both at Guys and St Thomas.

If I can find the sites I used I will message you.

Jumper99 profile image
Jumper99 in reply to Greenmil3

Thank you, that’s very kind.

Hallo,

I think you have told us earlier that your INR was low.

I think that is the problem. Talk to your Specialist about this. We have "sticky blood" and that gives many of us severe neurological symptoms. I was one of them before I started Warfarin 2012 and selftest.

I could not manage the CoaguChec xs and Karolinska hospital (NKS) in Stockholm changed to "iLine Microsystems S.L." Works perfect for us with APS.

Let your wife read "Stick blood explained" by Kay Thakray. That way she will understand you better.

No divorce should be necessary but get help from your Specialist.

Greenmil3 profile image
Greenmil3 in reply to Lure2

My INR is not low but thanks anyway it is between 3.6-4.5 these days

I can relate to your anger, frustrations ect

Last summer i was hit hard with infection, my inr was 1,7 so did injections every day.

I was so upset, angry and frustrated on it all. It felt like i was disapearing...

my gp Got me a therapist and this has helped me to take it easy.

I have lost my company, my job, am fighting pain everyday.

But im still here and still smiling because my therapist have given me tools 🙌🙏

I hope this help you 🥰🤗

I may be quite guilty of using my experience to assume everybody has the issues I had. I did not had severe anger problems, but MRIs have shown that what I once dismissed as terrifying " panic attacks" had actually been mini strokes leaving lots of leisions behind. Warfarin worked for me, but, the brain fog and exhaustion-for-no-good-reason continued until... UNTIL... I finally complied with a caring, but naggy friend, to try the Adkins Diet. And... WOW! My life changed within hours. HOURS! More energy, more focus. Turns out I had/have Celiac Disease. I am convinced that my immune system's relentless attack on something I was eating every day was also attacking my... my ME. And its not just me. I know Dr Hughes has noted a connection between gluten sensitivity and APS.

Do consult with a neurologist as suggested above. But you might try going gluten free, Or, research common food allergies and the possibility that you might have one. If you try an exclusion diet you must clear it with your doctor and keep a detailed food journal.

You are certainly in a tunnel. But keep going. You will see that light at the end.

Gina

.

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