Psychogenic blackouts

[Peps5]

Hi

I have just been diagnosed with psychogenic blackouts. They are happening about once a week. I keep getting injured from the falls as there is no warning and it is very difficult to work.

There seems very little information out there - has anybody seen an expert that has helped with this condition?

Thanks for any advice or help.

[tirthankar89]

Hi Peps5,

My gf used to have this very often as well. She had very low BP and was on high dose of medicine for latent TB. She stopped the medicine immediately but the effect continued for 6 months as the medicine was still in her blood. Doctors couldnt find anything and adviced her to boost her BP by eating frequently and be on high energy levels. Also no alcohol or any sort of drugs ia prohibited. She is fine now. just sharing the experience if it helps.

[Peps5 in reply to tirthankar89]

Many thanks. Not sure this is exactly the same condition but it is certainly reassuring to know that after so much time and treatments she has made a full recovery. It can feel a bit hopeless at times when doctors are struggling to find the diagnosis or treatment.

[Miriam82]

Hi there, I believe I have the same thing. I used to sometimes faint unexpectedly - triggered by stomach upset or some more invasive medical procedures. And Dr Nichola Gall diagnosed me with POTS about 7 years ago (I'm 37 now), but I have since had some incidents which can only be described as psychosomatic... I developed a lot of anxiety about fainting and now it can be a kind of self-fulfilling thing. I've just come back onto the STARS site to look for advice/others like me! Do you have any triggers or find yourself feeling stressed before it happens?

[Peps5 in reply to Miriam82]

Hi

I have now been diagnosed with dissociative seizures / non-epileptic attack disorder. I tend to shut down and zone out before passing out so I never know it's coming myself although my wife can spot it sometimes, but other times it is still without warning. Triggers differ for everyone but I don't know mine yet. You are right about it becoming self-fulfilling. Try this website for lots more information:

nonepilepticattackdisorder....

I'm still at the start of this but am having help from the neuropsychiatry unit at St Georges Hospital (London).

[Dakota44]

hi Peps5

sorry for the late reply but im sad to say that this is one of those conditions that dont exist in some specialist minds because they cant see it,, i have had an mri ,and every test under the sun .they still don't understand it. i've had this condition since 1997

and there seems to be no support or groups for this condition, it is really sad that we are now not believed or made to feel as if we are putting it on .

oh how wrong they are.

the only support there seems to be is on facebook, where there seems to be an abundance of forums but no actual help for the condition .

i would say in finishing

keep pushing the nhs for an answer, don't give up!! like they want you to do through there ignorance never let go

you didn't ask for this condition, and its the nhs that has a duty of care towards you

dont let them get away with fobbing you off.

keep on going