Strange feeling in head. Derealization. - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Strange feeling in head. Derealization.

Preserved profile image

Hi everyone. Hope you are all doing as well as you can. I had the MS or APS question in the past. To date I have been dx with MS but I have doubts. I have no doctor that I can see. My mobility is getting worst and I am exhausted all the time. Brain fog rampant so much so I don't even bother to figure things out as it's too frustrating.

I need to know if APS can cause you to experience derealization. I get it along with light headedness.

Thanks

Dee

23 Replies

Did you have contact with that french-speaking Canadian APS-Specialist 7 months ago?

If I am correct you have also had positive Kardiolipinantibodies.

We have found that the Neurologists do not understand our sticky blood so good at all. The Rheumatilogists and Hematologists understand it better. I know your last Doctor intended to give you a new Neurologist.

Yes you can have derealization. I had before warfarin one hour when I did not know if my parents were dead. At the same time I could speak in Telephone. Like living in two Worlds. We have a lot of neurological problems and you must talk to an APS-specialist who knows what to look for to decide if it may be not MS but APS. It is not unusual to be diagnosed with MS but in fact it is APS.

Best wishes from Kerstin in Stockholm

Preserved profile image
Preserved in reply to Lure2

Hi Kerstin, thanks for your response. The internal medicine doctor who I saw said he was going to refer me to a new neurologist and a hematologist who specializes in blood clots. I have been waiting and waiting as it takes a long time to get appointments. Unfortunately and to my dismay he did not do the referral. He only told me he was going to do so in order to shut me up. My PCP contacted his office and found he did not do it so she is trying to find me one. I did not contact the one in Quebec due to the French but especially since this doc told me he was going to get me someone.

That is interesting about the derealization. I feel strange in the head as if I am in a strange place and things seem unreal. It then brings on a panic attack.

MaryF profile image
MaryFAdministrator

Hello, I agree with the reply you have received from Kerstin, it is crucial that you see a specialist who understands Hughes Syndrome/APS in order to get more help with your symptoms. Please let us know know your progress with this. MaryF

Preserved profile image
Preserved in reply to MaryF

Thanks Mary. I will. Mary you say you only take aspirin. I do too as with no thrombotic episode they won't give anticoagulant. I see it on the website too; that without a thrombotic incident only aspirin should be given. So I guess the docs cannot do otherwise then.

MaryF profile image
MaryFAdministrator in reply to Preserved

I did have an awful lot of blood clots during pregnancy, but none since, but I have had a couple of large TIA's but at the time I did not realize what they are, I have been told that if my situation should change I may have to go back on something else. MaryF

Preserved profile image
Preserved in reply to MaryF

Thanks Mary. I pray your situation does not change so you won't need anything else. How long ago were those clots during pregnancy? Did you have miscarriages (if not too personal)

MaryF profile image
MaryFAdministrator in reply to Preserved

If you read my profile, which I purposely made detailed for the sake of this forum you will see that it was down to my own efforts that I had no miscarriages... I was in the right hospital at the right time, due to putting myself in there and being rightfully very suspicious about the amount of people having blood clots in my family! MaryF

Preserved profile image
Preserved in reply to MaryF

Ok Mary. I will check your profile. That was very wise of you.

Preserved profile image
Preserved in reply to MaryF

Mary and Kerstin. I checked my previous post for the link and realized that there was a list of doctors I did not see. One is just 2 hrs from me. I will print the page and take it to my PCP so she can do the referral.

Hello Dee,

I'm sorry to hear your going through a bad patch but look on the bright side! For one, you have friends :)

I have suspected APS been almost a year now since I was first put on warfarin, my first experience with headaches of a weird nature just like you explain and spasmodic (shooting pain/stabbing like at times!) was around two years ago. Things progressed into a constant fuzzy headache like nothing I have experienced before, to this day I still get the headaches 24/7! I take two paracetamol and one Tramadol which helps with the headaches and I do this religiously four times a day. Like you I have experienced

Confusion, unable to cope with daily chores, stress then creeps in, before you know it your in a bad place not to put to fine a point on it!

So when I found my self in that "bad place" I wanted to do something about it I also felt alone, I contacted a Kinesiologist I was prescribed ionic silver as it was what my body reacted to the best. This person was recommended to me so if your near Taunton, UK I will give you his number. After several weeks of taking the ionic silver I notice my head starting to clear and be more active, I want to get more involved with my life again I also have noticed other changes like my eye sight has vastly improved!

You don't really need a doctor but you do need someone to prescribe you meds!

I have also started doing acupuncture and seeing an osteopath all of this is giving me a positive mind and energy!

Please check it out you can learn a lot from going online.

I hope I have helped Dee your not alone but you can help yourself your the only one that has control of your future and your well being.

:) :) :)

Thanks Chef. I am in Canada where it is hard to find anyone who understands APS. I am sorry you are also having a hard time and wish for you to get help soon.

Hello Preserved,

Thank YOU for your thoughts.

I have to say as someone who had never heard of kinesiology up until three weeks ago, it's proving to be very helpful I can actually feel the improvement.

I know it's different strokes for different folks but I say what have you got to lose?!?!

Keep an open mind and hopefully good things will happen.

Good luck in finding a knowledgable consultant.

Take care

Paul

Lure2 profile image
Lure2 in reply to Chef_Spartacus

Hi again,

You have taken "ionic silver" for 1 week and you also take warfarin since 10 months.

This last week your vision has imporoved and your head starts to clear and be more Active.

What I suspect (not quite sure but it might be right) is that yourINR-level from your warfarin has increased by the "ionic silver" and that is why you feel better. You were low at 2.7 and never over 3.0 in INR before the Kinesiologist gave you this drug.

Please cheque your INR-level to be on the safe side!

Kerstin

Chef_Spartacus profile image
Chef_Spartacus in reply to Lure2

Hi Kerstin,

Thank you for your thoughts you could have a point, I didn't suspect this as the Kinesiologist told me the ionic silver wouldn't interfere with my meds!!!

I will get it checked first thing Monday morning.

Thanks again Kerstin

Take care

Paul :)

It is difficult to understand how you do the referals in your different countries.Try to translate to French or something like that. (I think Mary suggested something clever 7 months ago) She knows how to act better than me here in Sweden.

What I know however is that you need an APS-Specialist and need the right drug to get your blood anticoagulated. Do not take "ionic silver" please! Not untill you have talked to a doctor that understands APS.

Kerstin

Chef_Spartacus profile image
Chef_Spartacus in reply to Lure2

Oh, I'm worried now :0

I do feel a hell of a lot better though! :) :)

Lure2 profile image
Lure2 in reply to Chef_Spartacus

May I ask who gave you the warfarin and from what reason?

When you take warfarin you must have a doctor who is responsible at the clinic for your taking this drug which has to be monitored. Especially when you have too thick blood like we have!

I selftest every second day and you told me you had tested the INR on Dec 14.

If you feel better now that is very good.

I only wish you to have Control of your suspected APS. So many of us here have struggled to get a diagnose and a doctor who understands APS. This illness will control your whole body if it is not stoped; usually with correct anticoagulation. We have too thick blood! Read about it and learn then you have easier to understand that you need professional help to control it.

Kerstin

Hi Dee, I couldn't agree more with all the previous comments who suggested looking for a specialist medical help. I suffered similar symptoms to yours for a long time and it was hell. As I didn't suffer any DVTs diagnosys was difficult. Finding a specialist who knew APS was such a relief! Now I'm on aspirin and plaquenil and the fuzzy head and the enxiety attacks that follow happen far less frequently and they are milder. We are here for you and you are not alone!

Preserved profile image
Preserved in reply to danap

Thanks danap. It's good to feel others are there for me. I have been feeling really down lately.

Have you checked the US based sites: APS Action and Antiphospholipid Syndrome site? they provide lists of doctors on this side of the pond with APS experience.

There is much still unknown about this disease. Have you seen the recent YouTube video wherein John Cleese talks about how you have to have a certain level of knowledge in an area before you now that you don't know? Well -- doctors who have experience treating APS know that we don't know a lot about the disease. Many of us slip through the dianositic and treatment cracks if we

--sorry -- I was trying to correct the spelling of "diagnostic" and my incomplete post got uploaded. Sorry.

Anyway -- try to find and consult with an experienced APS doctor -- usually a hematologist or rheumatologist.

And your description of "derealization?" I called my pre-treatment episodes "panic attacks." But "derealization" is much more descriptive of the way I felt. Thanks for the vocabulary improvement.

I have not had a "derealization" attack since I started on warfarin -- (though under a doctor's (obviously) misguided suggestion I lowered my INR to 1.75 and had another episode. Never again. I don't care how many credentials a doctor has when he tries to "de-diagnose" me. Been there. Done that. No, No, No, NO! Not again! Those episodes -- by whatever name you want to use -- are terrifying, are they not?

Preserved profile image
Preserved in reply to GinaD

Thanks Gina. Interestingly a couple months before I got numb from waist down and this journey started I was having episodes of derealization that turned into full blown panic attacks and pain in my chest. I thought it was just panic attacks coming back as I have PTSD with panic attacks etc since 1990. Somehow they felt a bit different. Oh those episodes are awful.

I have been reading and realised that it goes along with APS also even though my dx is PPMS and I have positive aCL tests. I am so scared of having a heart attack, stroke or PE. I have to be trying hard to not let it get the better of me. I hope I will get to see someone soon. I live alone and so it is harder for me to deal with. If there is anyone on here who would not mind talking with me please inbox me.

I am praying the aspirin I take daily will keep away any thrombosis. I am concerned though that I just sit or lay around most days. I have difficulty walking so I don't unless I have to. I don't think that is good with sticky blood. I just bought a second hand stationary bike and should get it soon so I can get some cardio in. Do you exercise everyday and if so what do you do?

Preserved profile image
Preserved in reply to GinaD

Oh I also found the list with the doctors so I will print it and take to my NP who is my PCP and let her do the referral. I hope I get to see someone soon because I am very worried at this point.

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