ME

I was also diagnosed with ME I tested suspicious for Glandular fever and toxoplasmosis?This is years ago?It all went away (To be honest a lot of my symptoms where major trauma)It caused be to disassociate completely when I was much younger as in zone out (I would sleep through anything or have my eyes open just staring into space be oblivious to everything around me.IThey thought this year that was the same thing or conversion dissorder .Or fits .I await my MRI I have a good physio and a good GP.But it's frustrating you know when you are unwell as in feeling really ill (When your disassociating or anything like that you are cutting yourself off from the world around you.Half the treatments I have had mostly for mental health have given me all these problems (ECT??Neuroleptic Malignant Syndrome.They seem to know more about it in the USA (I haven't met anyone else that had epilepsy as a result of ECT or been warned that it can cause it or that Neuroleptics (anti-psychotics and some anti convulsants can case this)The only thing I can say is that people should be made aware of the treatment risks and certainly if you have a grande mal after your first seizure you should not be given 20 more my parents where told there was no link!They where not asked and nor was I being sectioned it seems they can do what they want I came off Meloril that was banned it affects your heart Got put on haloperidol (That most defo should be banned )It maybe rare but it's not funny when you end up with more problems than you started with I find it exceptionally hard to trust any medic now.Hopefully I get on OK this time.I try and just go when needed.But it's mainly Physiotherapy which is majorly helpful and 1001 blood test I was never scared of any needles or anything now I am terrified (I have felt like worse than a pin cushion)Been through pain off the score ...Far worse thuan child birth no present at the end!!

[jill55]

Your story sounds a bit like my daughter's. Diagnosed with ME in 1991 age 14. Bedridden for 2 years unable to feed/wash herself watch TV etc slept in our lounge couldn't get her upstairs. Roll on 20+ years now has EDS a connective tissue disorder (genetic) POTS and is in hospital now one symptom being unexplained fits she has also been temporarily paralyzed from the waist down. In a book I read on ME in the 90s there was a report from Harvard that said something like 7% of patients with ME suffered from fits. The neurologist at the time threw the book across the room when I showed him. Thanks she has not had the same medical treatment as you. But as I say has the symptoms. Good luck in finding your answers.

[Hidden in reply to jill55]

My seizures I think where almost defo started by ECT (for depression)I never had one before I had one session in my 20's to each tepel lobe under anssthetic(it induces a seizure)On way from Seven Oaks or (Prisson of war camp)That was hugely expensive for eating dissorder(The psyche has been struck off two people died??)Not me she was worse than any abuser it was called regression therapy...That led to the deepest darkest hell I have ever been in.An hour a day..It was tourtre to anyone I began immediately to think that the abuser had caused my stomach to rot (psychotic depression brought on by her)Two days after first session in car I was on way to second session just remember feeling weird (Status Eppilepticus )On motorway from Sevenoaks to Canterbury??Toung chopped up like mincemeat never had it ever before(I was Zombie in hospital 4 days)They continued the same treatment I continued to have multiple seizures out of it for hours or in A & E at the Kent and Snuffit ..Ended up on a peg and stuck in there a year went down lower than lowest ever weight would keep nothing down not medication anything(They tried to fource feed me restraining me 4 people One holding my nose and her trying to fource it in my mouth (I spat it at her and managed to hit her)😊❤️Eventually after lots of seizures my lovely Then psyche visited after a year I couldn't bathe when I eventually did I lay on towels (I screamed when the scales hit 4 stone)They made you weigh everyday.Except when I was bed ridden for 6 weeks no hair brushed my mum had to cut out the mats We when I was on the peg and finally up.A shadow of myself compared meds I was on Christ knows what (Anti convulsants,Anti psychoctics we all where )My friend was told if she didn't gain 2 kilos in a week she would be tubed..If I hadn't got out then it would be in a box.A flat pack box.The epilepsy is left temprol lobe.The anti psychotics and the anti convolsants caused the Neuroleptic Malignant Syndrome (I am recovering in spirit,most of the time...)Get bloody cross I have finally had good therapy and found so many brave friends most with Anorexia have been abused I have yet to meet one that hasn't.I had a tetanus injection immediately before?The me?But don't even know if I had ME I was major depressed and traumatised.First time I was psychologically ill.But at the same time I was in splints hands and legs first time of contracture's if psycho samatic fine (Am prepared to accept that)But my seizures at 20 where not and nor is this I have never been less psychotic less drugged up in my life.My seizures for once are completely controlled since Oct..But my memory is gone short term(I wish it was reverse?)Long term erased!!I look more myself but don't remember a thing!!I drop cards debit in the car put the wrong codes in things seems like mission impossible!!I wish I could shout at the correct people.I would not put my worst enemy not anyone through this(I am terrified my son will get Ataxia,Not Bipolar I don't Apparently now have that..It changes every person I see.I going to change my name by de-pole to #Complex!!That is enough to make you weant to hit the person(I know it's complex)It wouldn't be me minus the #Complex But it's not really an answer for £400!!And nor is psychological!😬A broken ankle!!Or throwing up blood..Or a tempreture of 104!!That much I do know!!

[Hidden in reply to Hidden]

Until I know more (and seizures hardly ever pseudo I had 1 in life time...)They attempt to tell you that you know nothing (your over anxious parent!)They thought I self harmed I fell into a boiling coffee.Cut my nose and burnt my arm mega deep!Blisters (don't be fobbed off)My friend has complex partial that They tried to say was pseudo!!She had one tonic clonic and landed up in hospital..She never had any problems mentally??Its hardest one to detect its so deep in the brain.My mental health is much better.It won't magic away and not everyone has it but once a label.Stuck on your head that's it with mental health myself it's been harder(as for no stigma???)It's mainly Experts ...They can get it.Some are great other Drs like with any condition are abrupt in human and not caring especially neurologists .With two Dr's ill it's hardly likely to be psychological...And I am probably completely wrong.I don't even know myself with my ME but my glands where up even in my groin and stomach..So I unsmderstand you got to do your own research and never be told it's made up in your head or a mother who knows nothing my Brother with Cancer falling over all over the place took himself to A & E had he not he would not be here he made many trips to the GP.He hadn't registered or been for 10 years...My number is 01227 730969.Phone me later.if you want to...I got GP feel physically so ill.At least taken seriously there.Bloody spasms in neck and shoulder on one side still hurt two days later and my sleep is weird.3.40 am I again thought I had a text with a picture got up put a jumper on phone was still on charge??Please not lost me marbles!!!

[Hidden in reply to jill55]

What is POTS??

[jill55 in reply to Hidden]

Postural orthostatic tachycardia

[Hidden in reply to jill55]

I understand I had to google it no one explains these complex words they use but kind of makes sense!My fainting fits happened when i stood up,but worst just after I had my little boy was told to have a hot bath got back to the room fell over backwards and had a fit!

[Hidden in reply to Hidden]

Are your daughters seizures under control?

[jill55 in reply to Hidden]

They are non epileptic. She's still under investigation.

[Hidden in reply to jill55]

My friend been there and me once hers and mine once classed as PSUDO seizures..Trauma can cause a lot off physically real illness.Not made up my friend has Complex Partial .To me makes no difference but to get this at 14 mine was kind off escape but also very ill it lowers your immune system mine and my friends are real (I don't know about the ME?But it's a relief mine where spotted on the EEG .My friend it's driven her crazy she had a tonic clonic.Her seizures got worse she has had them long time in her sleep..Wake her husband up.She is on 3lots of meds to control them but so deep in the brain very hard to spot.The last fleeting suggestion was PSUDO..Not helpful the PIP tribunal a nightmare she got less (dipite asking for a recount because she had to give up work.She had one at work..Kept being late in,medication...And seizures all flipping night.)She has no mental health problems but due to PIP she ended up on Anti depressants!!.Her hubby nearly did as well they are skint..But make life happy and she is a great friend.I cant say about your Daughters ME.Sometimes they say that because they don't know,even I don't but I felt bloody ill but was stressed to what I thought was the hilt.I kept getting awful tonsillitis it was horrific.I couldn't swallow my own silica.That was not made up.I was knackered but had mega been through the mill.I was abused and the Dr (dismissed left it over 7 months I had medical evidence and a witness,she accused my Dad!!Along with 13 other parents.Some had there kids removed.So I had kept stum.It was a threat one of my abusers kept repeating care and prison...No way was I going to speak.One girl was threatened with a shot gun she was able to speak...In hindsight (which is useless I wish I had spoken)But I was terrified...It causes so much stress and anxiety I was living in same street as one of them ,the other I later found out was in Prison already for multiple counts of .He died there.Mine I met after I had moved house still in same village age 20.I thought it was like being haunted .Could'nt sleep or eat or tell my parents till I cracked up!!The flashbacks are gone.But they where awful.

[Hidden in reply to jill55]

Blimey complex I had fainting fits as well last time I had my blood pressure taken it dropped low when I stood up,having fallen backwards over a fence(I was on crutches but not paying attention!)I don't want anything else!!!I await and see!!I am meeting a husband and wife in June who live near me!!I have physio and GP before then!!

[jill55 in reply to Hidden]

Both daughters have this condition. One of their GPs told them only old people have the condition. Huge amount of ignorance. You need to make sure you drink loads water. They are also both on salt tablets and other meds.