Psychosomatic or???!

[Puska]

I know most of us are plagued by the awful headaches. I had a DVT in my internal jugular vein last year. It's disappeared and largely I forget about it. I'm on Xarelto permanently due to later LAC positivity. So when I get one of these headaches, the area on my neck where the clot was just aches. Each time. Once the headache passes so does the ache. Husband doesn't think it's related but coincidental. Last night I had a really bad head. Quite distressed with it in fact. And my neck (just on one side) was aching. I'm having a follow up appt with the rheumatologist next week and obviously will ask but I'm curious - could there be a link or is it just that I'm thinking about APS heads and that causes the neck ache? Thoughts?

[lupus-support1 Administrator]

You are wise to discuss this with your consultant when you see your rheumatologist next week.

I am curious why you think this to be "psychosomatic"? It sounds as if you have been made to feel "it's all in the head" before.Unfortunately,may patients describe this feeling of being disbelieved, or not taken seriously.

With good wishes,

Ros

[Puska in reply to lupus-support1]

Well, not exactly psychosomatic - husband certainly understands my health issues etc but it just seems so strange to only have this discomfort when I have this headache. So it's like the headache is a reminder of what 'started' this journey and boom I'm thinking about the hospital and the clot because of the neck pain. Hopefully the Dr can shed some light.

[Glomara]

I was diagnosed with APS in 2009 and I experience a wide range of symptoms from time to time but the headaches I find are the worst and more debilitating of them all. I have been tormented by the same type of headache you're describing for the last two years, as of now I've had this headache that stars in my neck only on my left side for about month now, sometimes it is so bad that my ear and my throat Will hurt from it, At first I was prescribed muscle relaxers which really improved the pain, Unfortunately after taking those for a while they stoped working.

I recently got an MRI of my brain to see if they could find anything that's causing this horrible headaches and I'm still currently waiting for the results.

[Puska in reply to Glomara]

Yes. Even my jaw and teeth ache so I think maybe I have some dental issues but as soon as the headache goes so does the jaw pain. Even though I take Xarelto nurofen seems to work for me but I try take it 12 hours after. And take it with toast and a full hot drink. These headaches make noise and light intolerable too. Very debilitating.

[Glomara in reply to Puska]

Yup, sounds just like it! I recently figured out that I get them for sure after prolonged sun exposure.

I know how terrifying it can be because it mimics a lot of other things and at times it gets so bad I literally feel like I'm about to die, at last finally someone who understands! I'm sorry you have to endure this as well, hopefully we will figure this out and get some kind of releaf at last, I only wish I could be who I used to before this headaches started it has literally changed my life for the worst.

I will keep you posted on the MRI results or if I can find out anything about it, please do the same.

Best luck to you

[Puska]

My fear is that I'm having a stroke or in the process of. I've got to get used to that. Never crossed my mind until the DVT but now I know I have the potential. My mum had a stroke even though she was on warfarin. She died just 6 weeks before I had my dvt so it's a bit stressful when they happen.

[Glomara in reply to Puska]

Wow so sorry to hear about your mom! I completly understand my father had a stoke at 34 and has been paralized on the left side of his body ever since so it is terrifying, we have seen how bad this can get, I usually freak out everytime too because the last thing I want is to get a stoke or DVT all I want is to see my child grow up, I take care of my self a lot but seems like no matter what I do I'm plagued with all this horrible symptoms and headaches 😩.

I rather freak out and be told everything is well than just to think I will be fine wait it out and end up worst or even dying so always if you can get checked go the extra mile, what we have to endure it's nothing to take lightly.

[HollyHeski Administrator]

Hi, headaches, aches & pains are very common as you say, you also have other autoimmune problems so yes talking theough all your sypmtoms with your 'to keep' specualist is good, also mention your Mum (sorry for your loss), in your past posts youve mentioned xeleto, are you on warfarin? My question is are you being anticoalgerated enough? If my blood is too thick, I get headaches especially around the area where my strokes hit, I presume this is now a permenant weak area. Xx

[Lure2]

Hi,

I agree with Holly and wonder if you are on the optimal anticoagulation?

We need on Warfarin often an INR of 4.0 with these neurological symptoms. Sometimes an antiplatelet-drug like Aspirin or Clopidogrel on top of it. Discuss with your Specialist, who I hope have had patients with our illness before, if Xarelto is ok for you!

I am LA-positive also and on Warfarin (selftesting needed). There are other options like LMW Heparin(Fragmin) also if Warfarin is difficult to handle. On Warfarin with LA positive you must doubletest both in vein and in finger several times to see that the difference is always the same.

So sorry for the loss of your mother! I wish you Good Luck to be without so much pain!

Kerstin in Stockholm

[Lure2 in reply to Lure2]

Also as an answer on your question; "Psycosomatic".......... do not let anyone make you believe that!!!!!

We have found here that the Neurologists do not "get" what this illness is about - too thick blood that must be steadily thinned at the right level.

Kerstin

[Puska in reply to Lure2]

My INR when I had the DVT was 1.2 which is on the top mark for natural INR here yet still clotted.

[Lure2 in reply to Puska]

Hi,

I do not understand what you mean .... still clotted ..... you were not anticoagulated or? I had 1.1 before I started anticoagulation.

Have I asked if you have got a real good Doctor for your treatment who knows our illness?

Kerstin

[Puska in reply to Lure2]

Sorry Kerstin. My INR was 1.2 before I started Anticoagulant and when I presented with the DVT.

[Puska in reply to Lure2]

Yes Holly and Kerstin - I have often wondered about X versus warfarin but have real concerns after what happened on it with mum. She had numerous autoimmune issues also (hyperthyroid at 17 years old) and I think she wasn't properly assessed. My grandmother - her mother - had micro strokes from the age of 60 onwards - well before APS was 'discovered' so think she had this also. I've pinged off an email in advance to the specialist as I tend to blather in appointments.

[Lure2 in reply to Puska]

You have a family-history of autoimmun illnesses. Important for you to get to the right Specialist who knows autoimmun illnesses.

Prof Hughes talks about "the big 3" - which are Thuroidea-illnesses, HS/APS and Sjögrens syndrome. Also that the Specialist will take a lot of blood-tests on you now.

Please stay with us here so we can hear what happens to you and your appointments!

Kerstin

[Puska in reply to Lure2]

Will do. I have stacks of blood tests every 3 months. I think my rhuemy is highly regarded here in the Lupus world but not so much with APS.

[Lure2 in reply to Puska]

You should have a Specialist who knows all the autoimmun illnesses and who has worked with HS/APS so he is well versed with the different symptoms and also the treatment. This is our great fight here to find that Doctor!!

The autoimmun illnesses are very very often linked together and can appear suddenly after one another. Sometimes we have negative antibodies but the illness never go away and after some time they are positive again.

Kerstin

[KellyInTexas Administrator in reply to Puska]

You're not alone! I keep a check list to keep myself on track. I used to really feel frustrated with myself about this until I stooped to think about it:

Most people see the doctor if the see a for ONE issue that affects ONE system.

What happens to APS patients? ( I can only imagine for poor full on Lupus patients also with APS...) we have multiple system involvement. GI system, vascular system, Heart, muscle/ skeletal/ , urro/ Gyno at times, neurological, endocrinology, internal medicine,

My goodness! Of course we can, " blather!" We are the most random, disjointed seeming lot of patient dub group I can fathom. Look at our stories of our journies. The confusion to diagnosis.

My favorite line from a regular doctor:

"How can I help you today? What is the one thing you need help with today." As they look at the time, knowing the next patient is in 10 min.

It's not as if we just have a cold and need something for it.

[GinaD]

First the disclaimer: I'm an English major housewife from West Virginia, so I do not know if the following is 100% accurate: my understanding about the standard headache format is, that, there is an initial circulatory "mistake" wherein the vessels in the brain either expand or contract suddenly to deal with a "trigger" or some metabolic imbalance. But too much or too little circulation is bad for the brain, so the circulatory system will go into a rapid reverse mode: from expanded circulatory vessels to restricted, or vice versa. It is this sudden compensatory action which causes a headache. Blood vessels are close to the many nerve cells in the brain. When the vessels either press harder or pull back creating a "gap" the nerves register this change as pain. Hence the headache.

So, given this model it is easier to see how APS issues may either cause or result from a headache. When vessels go from expanded to contracted there is a greater likelihood that our sticky platelets will get "caught" in a vessel, especially if that vessel is already on the immune system's"watch list" due to previous clot damage.

Hope this is , A, accurate,and B, helpful.

[a_schaider]

For me I look at blood as the superhighway of our bodies, moving primarily oxygen and nutrients to every cell from our toes and fingers to our brains. When you have "Sticky Blood", that transport system gets "gummed up". Lack of oxygen brings headaches or worse strokes. Micro clots affect every organ of our body because they prevent oxygen from getting to those organs ( and muscles). That is why we need to thin our blood (to an INR of 3.5-4.5) with Coumadin or Heparin ( Fragimin) . Keep those clots from forming and Get that blood moving .

I have tried Xarelto and it did not work for me. I also take aspirin. I also drink lots of water to keep my blood thin and moving and I use oxygen that really helps when I have had headaches and body aches (hip pain) from micro clots. I also take Diltiazem and Riociguat (Adempas) to keep my vessels open. I was plagued by severe headaches, muscle aches and spasms for two years. Doctors prescribing anti depressants bc they thought it was all psychosomatic. That all went away but it returns if my INR is below 3. Finally exercise is important because it keeps that blood moving. Best exercise for me is the pool, it lets me move all of my body.

I am not a physician (but I am married to one) . I have a degree in Molecular and Cellular Biology so I read lots of studies on the dynamic of our autoimmune disease. I have to rely on keeping up to date with research because physicians in my city of Chicago are not experts bc APS is considered rare .

Hope this helps.

Every patient is different. I am 55 and have had APS now for 35 years. I was only recently formally diagnosed 2 years ago. I have had many clots through the years ( one that looked like algae hanging from my aortic valve). I have pulmonary hypertension, intercranial hypertension and muscle pain from microclots. But Coumadin and the regimen I mentioned above, let's me live a fairly normal life and I exercise with daily walks of 2-5 miles a day and trips to California and Europe ( I always bring portable oxygen concentrator in case I need an oxygen boost). So it is possible to live with us disease.

Good Luck and don't let anyone ever tell you that what you are experiencing is psychosomatic.

[Puska]

Thankyou everyone for your helpful replies and they make so much sense re this damn sticky blood. I'm aware that I don't drink enough water which clearly is not good. I've had hashimotos for over 30 years and sicca symptoms for the same, never managed a successful pregnancy and skin rash issues for 7 years. All managed separately. No doctor ever connected any dots and even with the DVT it was my sister in law who made me search further. Her daughter (my niece) in her 20's has Lupus. Hopefully I'm on the right track now but at the later end of my years. Better late than never I guess.

[Lure2 in reply to Puska]

Absolutely!! Together with the right Doctor (you know what I mean) as we have to fight for our life!

Kerstin

[MaryF Administrator]

I am glad you have emailed your consultant, I do know that other than people having worse headaches when their INR is not consistently high enough, also at times people do hurt where they have had a clot in previous times. I do think you should go into detail with your consultant, trust your own instincts with this please. MaryF

[Puska in reply to MaryF]

You are so right MaryF. We must listen to our own bodies as they are telling us a story. That *sometimes* Doctors listen to.

[Puska]

Update. Had the visit yesterday to the Rheumatologist. Blood all ok except thyroid but more on that in a bit. My concern was the sensation of the '18 months ago DVT' sensation during migraine. I told her my fears I was having a stroke. Her first question was whether I was still taking anticoags properly. And plaquenil. Big yes on that. She examined me (her appointments last around 40 minutes - very thorough) and said that side of the neck is more swollen than the other but no extra warmth. She's given me a form for ultrasound (previous one a year ago showed resolution) so will get that organised. Husband wants me to do it asap but I'm thinking of waiting until it rears again. Now the thyroid. I've been hashimotos for over 30 years (TPO antibodies >1600 when benchmark is <100) plus clinical high TSH and and low T3/T4 so easy diagnosis. Dosage has varied between 150-200 mcg a day. (Think that's the correct measure). When hypothyroid my TSH was usually around 6 (<3 is standard) so this means dosage gets increased. Yesterday TSH was 46! So high the lab repeated the test immediately with same result. Specialist said she'd never seen one so high. Oh. But the trouble is that my T3 and T4 were about mid range normal. So the TSH level makes no sense. I have to have a followup in 6 weeks on increased dosage but if TSH is still high then off to have MRI. Pituitary issue maybe. Can only mean an 'oma' ending. :(.

Maybe there is some kind of relationship with what happens in my neck and the TSH thing and thyroid?

[HollyHeski Administrator in reply to Puska]

Very confusing and worrying for you. Hope you feel better soon and wishing you good news xx

[lupus-support1 Administrator]

I am sorry to read this news. It must be a very anxious time for you and your husband.

With good wishes,

Ros