Tingly buzzing??

[lloydyuk]

A poor title way to describe the following I'm thinking. I had a cerebellar haemorrhage, amongst other things in jan 2013 and since just over a year ago I've doing my damnedest to get my fitness, strength and endurance back in an attempt to raise the fatigue bar up. So far so good however one thing I often feel is a sensation in the back of my head, I did read a long time ago of someone who'd suffered similar and was a mountaineer!! He put it down to neural pathways being re made or connected and stubbornly refused to give up on his past times. Does anyone have any thoughts? Whilst a bit unnerving/weird there is no pain or I'll affect.

Danny

[Hidden]

I suggest that you see a neurologist as soon as possible.

[Lure2]

Have you got an APS-Specialist to talk to? I know you want to selftest. Good luck with that.

If you see a Neurologist they usually do not understand what APS is about. Try to keep the INR in range. Hope the therapeutic range is settled at the right level for you. Have you had a bleed earlier after your diagnose?

Kerstin

[lloydyuk in reply to Lure2]

Hi kerstin, I had CAPS in 2013 which did all sorts of damage to my body I was first diagnosed with APS back in 1995 when I was 22. I found out much later I'd had TIAs back then or a mini stroke as they called it so I had a dead bit of brain a long time before I had the serious haemorrhage on New Year's Day.

Hope you are well.

Danny

I should hear if my application for self testing has been approved this coming week too!

[MaryF Administrator in reply to lloydyuk]

I do suggest you get it checked out sooner rather than later, but I have heard of other people having similar sensations. MaryF

[Lure2]

So you have a long story of APS. A CAPS, that is quite unusual. Did they put you on warfarin in -95? Do you have all the antibodies for APS also? If you have got Lupus Anticoagulant it may be more difficult to selftest.

My bloodpressure is ok now as I can keep the INR in target. It was very hig and unregular before warfarin.

Also the Pulmonary Hypertension is stable at the same level. My Leaking Heartvalves are about the same also, a bit progress perhaps. I am not breathless which seems to be very important as the cardiolog always ask that. For me Warfarin has meant everything to the better.

Good luck the coming week then!

Kerstin

[salva76]

Hi danny i wonder if you had a plasmapheresys treatment or inmunoglobulines when you was diagnosticated as CAPS in 2013

[lloydyuk in reply to salva76]

I think I had plasmapheresis if that's the same as plasma exchange? Excuse my ignorance! If do I'm told I had about 12 of them...

[salva76]

Yes it is the same...it supose that is the treatment for CAPS with inmunoglobulines.

I wonder if after that you feel better for a while, because if yes you should keep having plasma exchange every year to keep your antibodies low.

How do you get your antibodies now?

You know antibodies affect to neurology system too. It is not necessary having clots to feel head pains. But i know is scared. The best think would be to do a scanner to confirm it is not any clots. And that way you can look for neurophatics symptoms . Maybe neurology can give you some drug to relieve your pain.

I got aps with neurology problems i had embolism pulmonary and now i have heparine but my head pain come back again. I did some scans and they are normal. I got espams and cramps too so i know aps attack neurology system and we need some help from our aps gp.

I am thinking to have some plasma exchange sessions plus ivig, its not a cure but they told me maybe helps toimprove my symptoms for a while. ..

I hope you feel better soon

[lloydyuk]

Thanks I didn't know some of those points

[Hidden]

"I had a cerebellar haemorrhage, amongst other things in jan 2013 and since just over a year ago I've doing my damnedest to get my fitness, strength and endurance back in an attempt to raise the fatigue bar up. So far so good however one thing I often feel is a sensation in the back of my head, I did read a long time ago of someone who'd suffered similar and was a mountaineer!! "

Hi Danny I had stroke myself a few years ago. I still get funny sensations at the back of my head.

I'm currently waiting to see another Rheumy, who understands this condition a little better than previous ones. I have been under Neuro(s) who were far more concerned by this condition than my previous Rheumatologists. Do you get any tinnitus or any other symptoms (balance, hearing etc?) as well as the abnormal sensations at the back of your head?

You only had the major event in 2013 which is fairly recent (only two years ago). Mine happened six years ago. I was totally out of action for the first three years at least. Once the tissues (axons / neurons etc) get damaged, it does leave some ongoing issues. Hope you get to the bottom of this with your trusted MDs.

Best wishes,

[lloydyuk]

Thank you

[mylafont]

My neurologist told me that the brain can be very resilient. When it's damaged, it can't repair the damage but it can compensate in other ways. I had a possible TIA in 2013, but the APS antibodies continued to do damage to my brain until my INR range was increased and I was tested more often.

I developed sensing smells that are not really there and sensations that go along with them. I think it's the way my brain has made up for the previous damage. I could be wrong, but can't explain it any other way.

[lloydyuk in reply to mylafont]

Thank you I've learned over the past week from people that the antibodies themselves can do damage/cause problems to the brain without clots or bleeds. I didn't know this before.