Brain fog

[Mel19]

I have terrible balance problems and feel like I'm on a boat swaying most of the time. Also brain fog is a massive issue for me. I have started to experience panic attacks due to my head feeling bad most of the time. Does anyone else feel the same or has anyone tried anything to help relieve these symptoms please?? X x

[Lure2]

Dear Mel,

Have you been tested for Hughes Syndrome (APS)?

You describe symptoms I had before I was well anticoagulated with warfarin. From which country are you?

Take care and see a doctor about your symptoms. It could be APS and then you need to be anticoagulated as APS means too thick and sticky blood.

Best wishes from Kerstin in Stockholm

[Salstar in reply to Lure2]

Hi Kerstin I have been on tablets two years and got worse. I use to bleed a lot when first on them, now my blood clots straight away. Will post next week when I find out from London Hospital any more information. X

[Lure2 in reply to Salstar]

Hi Salstar,

I know we talked a month ago. I remember APsnotFab (who really know this illness very well and she is also an Admin and how to proceed to get help among all the doctors) suggested something which I hope you have been able to follow.

I feel for you and I wish you luck to have an APS-SPECIALIST and to feel better soon. I cross my fingers and toes (if I could) for you!

Kerstin

[Salstar in reply to Lure2]

Hi Kerstin thank you so much the UCH said I have not got irreparable damage to my brain from the TIA and the Heamoplegic attack so that is good. They are requesting an Mri on the spine. They cld not rule out MS and said the haemotology department wld deal with that. I will post with results. They did say blood clots that I can feel under skin not bad like deeper ones? Fingers

Crossed I will find out more soon. Thank you again

[Lure2 in reply to Salstar]

Hi Salstar,

Good luck and please let us hear from you again!

Kerstin

[Manofmendip]

Hi Mel

As Kerstin has asked you, hve you been diagnosed with APS/Hughes Syndrome?

Dave

[MaryF Administrator]

Hi, have you had a diagnosis of Hughes Syndrome/APS or are you currently in the middle of being diagnosed? MaryF

[Mel19]

Yes been diagnosed am on warfarin daily and levels get checked monthly. The doctor has given me anxiety pills to help with the panic attacks but nothing seems to help my balance or brain fog 😞

[Mel19]

I live in UK x

[danapu]

Hi Mel19, I suffered from the same symptoms for a year before starting on medicine and a year after. Recovery was very slow and I'm still on a low dosage of anti anxiety meds. Do not despair but you should see the best APS doctor you can and tell about all your symptoms. I have found that other doctors just don't know anything beyond the blood clots problem.

[Mel19 in reply to danapu]

Thank u! My doctor said she could refer me to St Thomas in London to c Dr Hughes but there wouldn't be much he could do for me as there's no cure so she doesn't really c the point. X

[london-lass]

Hi Mel

If I were you I would fight to be seen at St Thomas/Guys

They are the experts, and I second all the previous advice.

I had awful brain fog and balance issues (I have had 2 falls with 2 dislocated shoulders )

and thought I was getting early onset Alzheimers until I had a clot and was put on warfarin. Even then, my symptoms didn't reduce until the day I accidentally got my INR up to over 4! Now if I am over 4 I am fine. Below that my symptoms come back. You need to see a specialist who knows about APS.

Don't give up......... go for a referral and let us know what happens.

Blessings Ann

[Salstar in reply to london-lass]

Hi I think I will ask about INR? I broke my back two years ago and kept falling to the floor. Doctors said it was probably to do with back problem.....undiagnosed by A&E.

Thanks for information. Take care 🙏🏽

[Salstar in reply to london-lass]

Hello, what is the INR you mention please? If that helps condition.

Many thanks

[Lure2 in reply to Salstar]

Hallo Salstar,

Are you on Warfarin now? INR shows how thick your blood is at that precise moment. Many members need an INR around 4.0 to feel ok.

Hope you are feeling better now!

Kerstin

[Sal0712]

Hi there. Have you spoken to your GP about the possibility that you could have a middle ear problem? Due to Hughes I have a lot of problems with Vertigo, which obviously comes along with dizziness. When it's bad i take a medication called Proclorperazine which really helps. Hope you find something that helps soon. Let us know how you get on xx

[Lure2]

Dear Mel,

If you have the possibility to be seen by the No 1 Expert (Prof Graham Hughes) do that!

I can tell you I know a woman here in Sweden who took her family with her and visited Prof Hughes. This is your chance of a lifetime.

I agree with all the others here about the symptoms and after anticoagulation you will most probably feel ok. I selftest and need an INR (the thickness of the blood) of 3.8 to feel fine.The Professor knows and understands that we need a high INR. We have very thick blood with this illness. So do not be afraid to bleed from warfarin.

Good luck from Kerstin

[Mel19]

Thank u will look into upping my dose of warfarin as I'm only 2.5 hopefully that will help x

[Salstar]

Hi I get brain fog & balance loss. what The panic attacks I had CBT to deal with them as they were due to being frightened of all that was in diagnosed and going on. This site makes you u set stand and feel normal. They are so lovely and helpful.

IFir anyone reading this who know I'm a newbie, I have Neurovascular Neurologist consultant Monday so will post findings regarding brain scan the tropical disease department sent me for regarding APS.....MS. Will ask lots of questions to. take care all xxx

[Lure2]

Dear Mel,

When we are on warfarin we have to be tested more often than once a month. Then you can follow your INR and know it is in the right level (not too low to get a clot and not too high to get a bleeding) with the INR.

Also read "Sticky Blood Explained" by Kay Thackray. She has APS herself and tells about the different symptoms and how it is to live with this illness. I have it in pocket.

I can tell you that I feel so glad on your behalf that you may be referred to prof Hughes.

Kerstin

[mylafont]

I had those same things pretty much daily. Check with your doctors, but since being put on Topamax, they only happen every few to several days. I may need an increase in dosage, but its so much better now.

I was put on Topamax because of seizures caused by damage from a clot. I was told a lot of those symptoms you described could be migraine related and Topamax is also a preventative for that as well. I also have double vision and lots of visual auras. Like I said, so far I'm happy with results although they still happen. I will talk to my doc to see if an increase in dose will make the time between episodes longer.