Difficulty getting diagnosis

EllieMay1969

Over two & a half years ago my daughter started getting headaches. She was 15 sitting her Junior Cert so we thought exam pressure and told her to relax it was only the JC and not the end of the world. However, as exams ended the headaches didn't. In fact they got worse and worse. Took he to gp in October as over the counter painkillers were not helping the headaches and they were becoming more frequent. She was now in Transition year and hated missing school as she had been looking forward to this year since she started secondary. Then one day in December on the way to school she blacked out in the car beside me. She was out for about 3 minutes, I took her straight to GP, who sent her to hospital and she was admitted for observation. They took the usual bloods and sent her home next day saying all was fine.

The headaches were still a problem but it was back to the gp who had organised Brain CT Scan and MRI already. She had another black out in the February which lasted 7 minutes. On a School trip in April she had another blackout which lasted 20 minutes and she got sent to hospital, where they did another Brain CT. Everything was fine so they sent her home next day.

GP then organised an EEG and referred her to a Neurologist. We took all our scans with us and he scrolled through them on his computer while looking at us. Then he told me that she was a 16 year old that needed a kick in the backside. He also said that "Teenagers faint all the time". We left feeling that he had made up his mind before we even went into the room. We were back in hospital the following weak due to severity of headaches and extreme weakness followed by another blackout, more bloods and sent home again.

The following weak things changed and not for the better. I called her for school and she said she could't move her legs. She could feel them she just couldn't move them. Needless to say this was a bit scary for both of us. I check her sensations and she could feel perfectly even when I dug my nail into her foot but she didn't even twitch. At a loss of what to do but trying not to panic I suggest she must have slept funny and had probably trapped a nerve and she would be ok, so lets just focus on moving a toe. Gradually after about 20 minutes she had movement again. This was the first day of her sisters college exams so we agreed to say nothing to her as she would only be worrying. She was shaking on her feet for a bit but managed to get ready for school.

So we headed off to school & college and upon arrival at her school, she was unable to move anything, so much for not telling her sister. Off to GP, couldn't get her out of car, gp wouldn't come out to car to see her, he simply said just bring her straight to hospital. From her school to gp to arriving at hospital was approx 1 hour and she was still unable to move. Paramedics had to lift her from the car. Gradually over the next few hours she got movement back and was admitted for observation and to see Neurologist next day. They did the usual bloods and ecg but nothing else. Next Day Neurologist said he didn't believe she couldn't move and I was feeding her delusions and to stop bringing her to the hospital.

That was how it all started. 2 years on from first blackout and she now has multiple blackouts most days, normally lasting anywhere from seconds to 20 minutes. Sometimes they can last longer, the longest being 2 hours completely unresponsive even to a pin prick. She was diagnosed with a rare form of migraine by another neurologist who on 2nd visit said she was suffering from stress, admitted her to hospital, got psychiatry involved then discharged her as needing mental health services. Local Mental Health services say she does not need them and her problem lies elsewhere.

Before all this she was a happy healthy active teenager, she was dancing, playing music, going to drama and doing well in school. Now she sits at home afraid to go outside for fear of having an episode and hurting herself or someone else when she falls. She even has blackouts when sitting down and in her sleep. She is in constant pain from all the falling. Her headache is constantly there it just varies in severity.

Has anybody out there seen anything like this before or have any tips on how to live with a condition like this that has no name.

Chrisita

.This sounds dreadful, clearly something is not right here and in your situation, I would now look for alternative type Doctors who are looking outside the usual causes, even naturopaths. Also search the net for clues and mystery diagnosis scenarios. It took me 22 years to find all the answers to my own situation, countless practitioners and therapies and it was not nearly as disabling as your daughters. Sending hugs,c

Julybreeze

If you can afford it I would recommend seeing Dr.Martin Ruttledge in The Hermitage, he specialises in all types of migraine and keeps himself up to date with the latest research. I really hope you get answers soon.

teelady

Poor you! Keep looking for a diagnosis - if i was to list out the misdiagnoses i personally know of i'd be here forever. Two worst were brain tumour - told it was migraine and overprotective parent!!! College friend lost use of his legs afew times - told he was faking it - now in a wheelchair with a terrible type of MS. And no one apologised!!!

What struck me was the black outs - could they be a type of narcolepsy? Did your daughter, by any chance, get that vaccine for cervical cancer they were forcing children in school to take a few years ago? IT was known afterwards to cause very severe side-effects.

You are now her best advocate and medical professional. Keep a note of episodes, symptoms, severity, stress/diet at the time and research research research. Google is your friend. But only read reputable sites.

Lastly, please take no offence when i mention stress above as stress does cause physical changes in the body and can worsen an underlying illness. And a low stress environment is good - also CBT can ease anxieties and help her to cope - and she has to learn to work around this illness - it doesn't matter that it has no name yet.

You don't want to let it win - accept it and work around it - isolation is not good for her at that age and brings it's own problems like depression that will then get confused with the underlying illness.



HTH

EllieMay1969

Chrisita wrote: »

.This sounds dreadful, clearly something is not right here and in your situation, I would now look for alternative type Doctors who are looking outside the usual causes, even naturopaths. Also search the net for clues and mystery diagnosis scenarios. It took me 22 years to find all the answers to my own situation, countless practitioners and therapies and it was not nearly as disabling as your daughters. Sending hugs,c

Thanks Chrisita for your advice. I am sorry to hear it took you so long to find your own answers. I will keep looking. I am nearly at the stage of google in my sleep, but since the medical profession don't seem to be able to look beyond the 5 minutes she is in their company I have to do all the research myself. Thanks for giving the time to reply.

Regards
Ellie

EllieMay1969

Julybreeze wrote: »

If you can afford it I would recommend seeing Dr.Martin Ruttledge in The Hermitage, he specialises in all types of migraine and keeps himself up to date with the latest research. I really hope you get answers soon.

Thanks Julybreeze for giving the time to pass on this information. I will definitely look into this man in The Hermitage.

EllieMay1969

teelady wrote: »

Poor you! Keep looking for a diagnosis - if i was to list out the misdiagnoses i personally know of i'd be here forever. Two worst were brain tumour - told it was migraine and overprotective parent!!! College friend lost use of his legs afew times - told he was faking it - now in a wheelchair with a terrible type of MS. And no one apologised!!!

What struck me was the black outs - could they be a type of narcolepsy? Did your daughter, by any chance, get that vaccine for cervical cancer they were forcing children in school to take a few years ago? IT was known afterwards to cause very severe side-effects.

You are now her best advocate and medical professional. Keep a note of episodes, symptoms, severity, stress/diet at the time and research research research. Google is your friend. But only read reputable sites.

Lastly, please take no offence when i mention stress above as stress does cause physical changes in the body and can worsen an underlying illness. And a low stress environment is good - also CBT can ease anxieties and help her to cope - and she has to learn to work around this illness - it doesn't matter that it has no name yet.

You don't want to let it win - accept it and work around it - isolation is not good for her at that age and brings it's own problems like depression that will then get confused with the underlying illness.



HTH

Teelady, what can I say, it sounds like you have had way too much dealing with a non functioning health system than anybody should in a life-time. I have previously had that overprotect parent line with my eldest girl & she needed surgery but again no apology...why that would imply that somebody was wrong..

My eldest girl had the swine flu so nobody got that vaccine and we also decided against the cervical cancer vaccine. So no cause there. Although narcolepsy was mentioned by a gp who happened to be in a shop where she blacked out. We are now waiting for a sleep study to investigate this.

Not in the least offended by your reference to stress, all too well aware of it being seen as the cause rather than a result of a problem. She is lucky that she has such good friends as they come to see her quite often and keep her up to date on whats going on & she goes out to a youth group once a week (well most weeks) which helps her feel less a prisoner. She is getting counselling too, to help deal with what is happening.

Thanks for all your advice and suggestions.

EllieMay1969

Thanks to all who posted a reply here & those who sent private messages. You have all been very helpful and I have lots to think on. If you hear of anything else I would be delighted to hear form you again.

Likewise anybody out there suffering anything like this please do get in touch. Perhaps we can support each other.

Regards
Ellie

loveisdivine

I will also recommend Dr Ruttledge. If you can't afford to see him privately you can get a referral to his Migraine Clinic @ Beaumont hospital. Its a long waiting list but its worth it. I'm currently a patient of his for a very rare type of persistent migraine. He is one of the best doctors I have ever seen in my life. My type of migraine is extremely rare, hardly documented at all yet he took plenty of time to go through things with me and at no point did I feel like he wasn't taking my, frankly bizarre, symptoms seriously.

Obviously I cannot diagnose your daughter, but everything you described can happen during hemiplegic migraines. The black outs would be a more severe case though obviously.

A lot of people are not aware that migraines aren't just headches. They can have very strange neurological effects. For instance, I get no real headache pain at all, but my vision is constantly "out of tune" causing various visual disturbances.

Most of all, migraines can be terryfying. The symptoms you can get make you think something must be seriously wrong and that you need help badly, only you get told that its "just a migraine" and not to worry! Which obviously is much easier said than done. For a long time I lived in a constant state of fear over when I would get my next "episode". Thankfully I have that fear mostly under control now, but it can still be very hard.

Edit to add - If you like I can PM you details that could get your daughter fast tracked, as I was, into the Migraine Clinic. If its a road you decide to go down.

teelady

You sound stronger Ellie! Do let us know how you and your daughter are getting on - and watch your own health.

You are not alone xx

Tee

EllieMay1969

loveisdivine wrote: »

I will also recommend Dr Ruttledge. If you can't afford to see him privately you can get a referral to his Migraine Clinic @ Beaumont hospital. Its a long waiting list but its worth it. I'm currently a patient of his for a very rare type of persistent migraine. He is one of the best doctors I have ever seen in my life. My type of migraine is extremely rare, hardly documented at all yet he took plenty of time to go through things with me and at no point did I feel like he wasn't taking my, frankly bizarre, symptoms seriously.

Obviously I cannot diagnose your daughter, but everything you described can happen during hemiplegic migraines. The black outs would be a more severe case though obviously.

A lot of people are not aware that migraines aren't just headches. They can have very strange neurological effects. For instance, I get no real headache pain at all, but my vision is constantly "out of tune" causing various visual disturbances.

Most of all, migraines can be terryfying. The symptoms you can get make you think something must be seriously wrong and that you need help badly, only you get told that its "just a migraine" and not to worry! Which obviously is much easier said than done. For a long time I lived in a constant state of fear over when I would get my next "episode". Thankfully I have that fear mostly under control now, but it can still be very hard.

Edit to add - If you like I can PM you details that could get your daughter fast tracked, as I was, into the Migraine Clinic. If its a road you decide to go down.

Loveisdivine, thank you for your information. I will keep in mind what you have said about the migraine clinic in Beaumont. Yes please do pm the details as it may be useful if latest set of tests don't result in some answers.

EllieMay1969

teelady wrote: »

You sound stronger Ellie! Do let us know how you and your daughter are getting on - and watch your own health.

You are not alone xx

Tee

I will Tee Thank you for your support.

lezizi

I suffered from daily headaches with black outs and migraines. I also had neurological symptoms. I'll his started as a teen age 16 I am now 28. I have ehlers danlos syndrome and myasthenia gravis but the diagnosis that accounted for the headaches, black outs and 'heavy' legs was POTS syndrome, it stands for postural orthostatic tachycardia syndrome. I wasn't diagnosed with this until I was 26.
A sign of this is fainting and blacking out. It migh give you something else to look at.

EllieMay1969

lezizi wrote: »

I suffered from daily headaches with black outs and migraines. I also had neurological symptoms. I'll his started as a teen age 16 I am now 28. I have ehlers danlos syndrome and myasthenia gravis but the diagnosis that accounted for the headaches, black outs and 'heavy' legs was POTS syndrome, it stands for postural orthostatic tachycardia syndrome. I wasn't diagnosed with this until I was 26.
A sign of this is fainting and blacking out. It migh give you something else to look at.

Thanks Lezizi,
Can I ask how they came to the diagnosis. As this may give me a direction to go in.
Regards
Ellie

lezizi

EllieMay1969 wrote: »

Thanks Lezizi,
Can I ask how they came to the diagnosis. As this may give me a direction to go in.
Regards
Ellie

They diagnosed it with a tilt table test ordered by a cardiologist. I had it done in Limerick. I'm not sure where you are based but I think there is a blackout and falls clinic in St James in Dublin that does it, or one of the hospitals in Dublin.

lezizi

What happens with me is my blood pressure drops low my heart rate goes too fast and not enough blood is going to the brain so I get headaches which result in black outs. The blackouts a far apart a fewer now since I've been on medication.

EllieMay1969

lezizi wrote: »

They diagnosed it with a tilt table test ordered by a cardiologist. I had it done in Limerick. I'm not sure where you are based but I think there is a blackout and falls clinic in St James in Dublin that does it, or one of the hospitals in Dublin.

Thanks Lezizi,
Yes there is a falls and blackout clinic in St. James's, we were there in April but the doctor she saw decided not to do the tilt table test. In fact she didn't do much. I think we have to try get back there and get the tests done this time.

EllieMay1969

My poor daughter is distressed today. Its 2 years on Saturday since her first blackout and she is no closer to a solution than she was a year ago. This morning she was awake at 8.15am, having had a real bad night. She was feeling so sick and weak that we decided she could stay in bed for another hour. When I went into her at 9.15 she was not asleep. She was in a blackout, how do I know the difference..well when you stick your nail into the sole of someone's foot, they react, even in sleep, but she just lies there, not a twitch. The horrible thing is she feels me doing this and it hurts. It was 11.00 before she was responsive. Its been a while since she had one that long.
I wish there was someone out there who would take her problem seriously..

lezizi

That must be frightening for both of ye. I get blackouts in bed and it's scary to feel like you are loosing your control on your body.
I think you should go back to st James and demand the tilt table test.
Has she seen a neurologist, was epilepsy ruled out?
Doctors seem to work by a process of elimination, but when your daughter is so sick it'd very hard to be patient and left with no answers.
Have you read into pots? do you think she could have it?
You can also do what they call a poor man's tilt table test. You take her heart rate at rest and blood pressure, then when she stands you monitor the heart rate and blood pressure. If the heart rate increases by 30 beats per minute from resting it can be indication of pots, and might encourage them to do the tilt table test in St James

EllieMay1969

Yes Lezizi

I have a blood pressure monitor that also records heart rate so I will do the test in the morning. Any such tips are greatfully appreciated.
She saw a neurologist 18 months ago who said she was a 16 year old who needed a kick in the backside. He then told me teenagers faint all the time. 2 weeks later she was admitted to the hospital unable to move, after a few hours she gradually got back mobility and saw the same neurologist next morning and he said he didn't believe she couldn't move. She was lifted out of the car by 2 male paramedics and a male nurse the day before and he didn't believe her.

After that incident we requested a referral to a different Neurologist and that went reasonably well. At the first meeting she was diagnosed with hemiplegic migraine and put on medication, to which she didn't respond, in fact things got worse. At the next appointment she was actually blacked out in the waiting room and then & there we were told she was suffering from stress. We did everything we could to remove any stress from her life. Teachers were great..homework was not required...still didn't help..now she is not in school and we have changed GP and gone back to the beginning. And that's what has me here pouring my heart out. Somebody out there has a piece to the puzzle that will help with getting her a diagnosis and on the road to taking back full control of her life.

We have been online searching and came across POTS and RAS both of which have similar symptoms to what my daughter is going through. So we have seen a cardiologist and he arranged some tests. All of which were fine, but the one that he didn't do was the tilt table. So I am ringing the Cardiologist on Monday morning to see if he will arrange the Tilt Table Test at least if it is ok we have at least ruled another thing out.

Thank you again for all your assistance.

teelady

Hi Ellie,

I'm sorry to read all that but it did make me think of Cataplexy - which is a part of narcolepsy or can come on by itself first.

If you read the fact sheet below and the cataplexy part - in the severe attacks the person collapses and yet can feel pain etc.

Hope it helps

http://www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm

Tee

EllieMay1969

Hi Tee.

I just read through the link you posted. It was very helpful. Some of what it describes is very like what my daughter is going through. It had a lot more information than we have been able to find up to now and it also states that exposure to the swine flu can act as a trigger for narcolepsy. We had heard of the link with the vaccine but as her sister had the swine flu we saw no need for the vaccine.

I know narcolepsy can occur without the vaccine but knowing there is a link between the swine flu itself gives us another avenue to look more deeply into.

EllieMay1969

My daughter had another EEG on Wednesday and had 2 blackouts during it. Here's hoping that they got some information that will help us get this under control if not stopped completely. Have to wait until February for the results though.

Also now have appointment for a sleep study in January. So fingers crossed one of these will lead to answers of some kind.

Thank you everybody for the information and experiences you shared with me. It has all been very helpful.

teelady

I never thought i'd write this but it's great she had the blackouts during the test!

Thanks for keeping us updated and have a great Xmas!

Tee

EllieMay1969

Hi Tee.

It is great that she had the blackouts during the test. Hopefully they captured some useful information that will lead to something.

Thanks for your continued support.

Merry Christmas & Happy New Year to you.

EllieMay1969

Happy New Year to you all.

Well 2014 has started just as 2013 ended with my daughter blacking out all over the place.

But at least we have some appointments coming up in the next few weeks for more tests so here's hoping for answers.

Now for a question? Does anybody out there know what these terms on an ECG Report mean?

1 Multiple Premature Complexes, Vent & Supraven.

2 Borderline Left Atrial Abnormality

Both of these appear on her ECG's over the last 2 years. Any help is appreciated.
I am now getting as much information as possible before I speak with a Doctor. I am finding the more I know going in the more information I can get out of them.

kangaroo

EllieMay1969 wrote: »

Happy New Year to you all.

Well 2014 has started just as 2013 ended with my daughter blacking out all over the place.

But at least we have some appointments coming up in the next few weeks for more tests so here's hoping for answers.

Now for a question? Does anybody out there know what these terms on an ECG Report mean?

1 Multiple Premature Complexes, Vent & Supraven.

2 Borderline Left Atrial Abnormality

Both of these appear on her ECG's over the last 2 years. Any help is appreciated.
I am now getting as much information as possible before I speak with a Doctor. I am finding the more I know going in the more information I can get out of them.

Afraid don't know except that "vent" and "supraven" are presumably short for
"ventricular" and "supraventricular" in case that helps some searches.

Best of luck.

teelady

Hi Ellie,

Looking for info for you, i read a lot of stuff and so i need you to realise before you read these that the ventricular complexes are seen as either something or nothing - depending on which doctor you see ... so don't panic on the extremes in the article

http://heartdisease.about.com/cs/arrhythmias/a/PVC.htm

And there was only one line answers or anecdotal answers to the Borderline left atrial abnormality info so i have posted an easy to read article on FULL atrial enlargement (as it explains what the left atrium does and how it can malfunction - couldn't get one on abnormality - probably too general a term) so read it with that in mind -

http://www.livestrong.com/article/126916-causes-left-atrial-enlargement/

However, they both seem to be just indicators that the heart's electrical rhythm might be the cause of your daughter's blackouts BUT equally they can mean nothing.

And be aware that feeling faint is mentioned BUT never blackouts so it might give you a clue but it's no solution.

I hope that this info along with the EEG info in february will narrow it down considerably for you.

~Also be aware that you or i might have those ECG reading results - but have no symptoms - it's one of the quirks of modern diagnostic testing that when you do get access to it it can be so thorough that you get a list of things "wrong" with you but none of them make you sick or cause problems - you are just outside the normal range. SO DON'T WORRY!!!!

HTH

Tee

PS just read that the abnormality is usually an enlargement

EllieMay1969

Thanks Tee you are a star. I googled myself but didn't find half what you found.

My sister is a nurse and seems to dismiss all the above references. She says often she would have an ecg that looked weird and the doctor would look and say that's all fine.

To be honest it baffles me that things can be wrong and still fine. I suppose I would understand if it was in an annual checkup and the patient was completely well and it was the only time it showed up. But when the patient is unwell and its showing most of the time. I feel it should be looked at. But I think they are looking at each ecg in isolation not as a collective over a period of time.

Thanks for your help.

Ellie

teelady

I understand your frustration Ellie.

I agree that such abnormalities should be used as diagnostic stepping stones or clues to an illness but the medical profession are trained differently.

I also would be of the opinion that the ECG findings "mean" something as, using common sense, if your daughter is passing out then maybe some people (as we are all made differently) DO pass out with these abnormalities even if 99.99% of the population don't.

This is where you need a very intelligent medical doctor who uses common sense and joined up thinking and does not just regurgitate the stuff they learnt in medical school.

The problem is medicine is taught on a statistics - ie if a patient has a headache, it is 99% more likely to be a normal cause and not a life threatening rare brain problem etc. This is fine for most of the population BUT not when you are the one with the rare brain problem that is not presenting the way they learnt it in a book!

You are doing a great job,
You are doing all you can,
Don't let it get you down
You can't change the world.... yet

Tee

EllieMay1969

Well the tests are all over and the results are all in and my darling daughter is blacking out for no reason that can be found so we are back to psychiatrists and psychologists.

So the medical people told her 16 months ago that her problem was psychological. Since July last year a number of psychiatrists in HSE & 1 private psychiatrist said they didn't think it was a psychological problem and that we needed to look further into a physical cause.

Having gotten all tests we can think of done (I must stress "We can think of"), we are back to being told its a psychological problem.

Now she is concerned that Medical says it psychological again, what if psychiatry say its not psychological still. While they are throwing her back and forth she is not getting help from anybody.

On the plus side the Neurologist has decided to treat the constant Headache that she has since Dec 2011. She has been on the meds since Monday and her headache hasn't improved any but she has slept better. But she is to increase dose after 2 weeks and then again in a few more weeks until they reduce/stop the headache. If the headache is causing the blackouts then these should stop too.

He has given her an anti-epileptic for the headaches but has stressed he is not treating her for epilepsy.

Here's hoping that these meds at least are the answer to the headache if not the blackouts.

sawdoubters

http://www.medicinenet.com/fainting/article.htm

teelady

EllieMay1969 wrote: »

Well the tests are all over and the results are all in and my darling daughter is blacking out for no reason that can be found so we are back to psychiatrists and psychologists.

So the medical people told her 16 months ago that her problem was psychological. Since July last year a number of psychiatrists in HSE & 1 private psychiatrist said they didn't think it was a psychological problem and that we needed to look further into a physical cause.

Having gotten all tests we can think of done (I must stress "We can think of"), we are back to being told its a psychological problem.

Now she is concerned that Medical says it psychological again, what if psychiatry say its not psychological still. While they are throwing her back and forth she is not getting help from anybody.

On the plus side the Neurologist has decided to treat the constant Headache that she has since Dec 2011. She has been on the meds since Monday and her headache hasn't improved any but she has slept better. But she is to increase dose after 2 weeks and then again in a few more weeks until they reduce/stop the headache. If the headache is causing the blackouts then these should stop too.

He has given her an anti-epileptic for the headaches but has stressed he is not treating her for epilepsy.

Here's hoping that these meds at least are the answer to the headache if not the blackouts.

The neurologist sounds excellent - thinking outside the box and willing to be non- textbook. That is great.

As for the psych side of it - it's what they always say until a medical test says "definite diagnosis - it is X".

I wish you and your daughter and family all the best in this new phase - at least now some treatment is being tried - and please the universe the medication works and your lives get easier.

That's a long time to have a headache - i missed that in all the posts - am getting old

Tee

EllieMay1969

I am delighted to say a my daughter is a month on medication and the frequency of blackouts has decreased substantially.

From multiples everyday, anything from 2 to 10+ a day. (Admittedly we did have the sporadic day without any but they were few & far between.

Since Feb 11th she has only had 4 blackouts. 1 on 21st, 1 on 25th, 1 on 26th and 1 on 27th.

Needless to say we are very happy with the improvement.

HistoryMania

Thats great news. So do you think her fainting was connected to the migraines she was suffering from ?

EllieMay1969

It certainly looks like the 2 were connected as both the severity of the headaches has decreased and the frequency of blackouts have decreased drastically. Although the headache is not completely gone and still gets really bad, but the medication is on an increasing basis to find the level that works for her. Granted there is an upper limit and the increase is every 2 weeks so we are nearly at the limit but delighted to say its still looking good even though she has had a further 10 blackouts since my last post, she has had the energy to go for a walk on a few occasions and is better able to function during the day. After 2 years of her getting worse by the day its wonderful to see improvements by the week.

Graces7

EllieMay1969 wrote: »

It certainly looks like the 2 were connected as both the severity of the headaches has decreased and the frequency of blackouts have decreased drastically. Although the headache is not completely gone and still gets really bad, but the medication is on an increasing basis to find the level that works for her. Granted there is an upper limit and the increase is every 2 weeks so we are nearly at the limit but delighted to say its still looking good even though she has had a further 10 blackouts since my last post, she has had the energy to go for a walk on a few occasions and is better able to function during the day. After 2 years of her getting worse by the day its wonderful to see improvements by the week.

So thankful there is at least some relief in this terrible saga. She is so young to lose so much of life.

It is her youth that makes it all the more appalling.

Please God the trend upwards continues.

Ailbhe72

Can i ask did your daughter get the tilt test in the end. Also did she have a brain scan. Everything showed up normal for me apart for tachycardia, EXCEPT when i did the tilt test- my bp dropped to 67/35 with reactive heart rate 141. Never get fobbed off with the psychological excuse, they always give you that when they don't understand whats going on. Hope you will find the right answers. INSIST on tilt test. Good luck.

EllieMay1969

Ailbhe72 wrote: »

Can i ask did your daughter get the tilt test in the end. Also did she have a brain scan. Everything showed up normal for me apart for tachycardia, EXCEPT when i did the tilt test- my bp dropped to 67/35 with reactive heart rate 141. Never get fobbed off with the psychological excuse, they always give you that when they don't understand whats going on. Hope you will find the right answers. INSIST on tilt test. Good luck.

No Ailbhe72 she has not had the tilt test. Nobody saw the need, as other tests did not indicate the need to do anymore. We are considering asking our new gp to request one though as the side effects of the new meds are becoming a problem since she reached the maximum dose. But they dont want to reduce the dose just yet as they say it will just take her time to get used to it. She is so tired she has been in bed since 9.00. She was awake from 10.00am but only managed to get down to the kitchen at 1.00 today. So instead of 8 hours in bed she is just over 8 hours up. It took 3 hours from calling her this morning for her to get dressed and downstairs. I brought food up to her so she had her regular meals. She was so lethargic on Tuesday that I had to hold her up to drink and had to bring her to the doctor to be told its probably the medication???? I am pulling my hair out at this stage.

Ailbhe72

It really does sound like severe orthostatic hypotension or POTS, although i'm not a doctor. I had very similar symptoms- i couldn't get up for 4 months. Is was only when i was admitted to hospital for the 2nd time and they checked my bp standing that they noticed a difference and i was then diagnosed with the tilt test.Most doctors don't have a clue about it. I get horrendous headaches as the brain isnt getting enough o2 and blood flow. I started doing (very very slowly) gentle exercise in sitting or lying positions and wearing compression tights, lots of salt and water-i was allergic to the meds. I'm alot better now but still way away from normal. Its important to get tested for everything to rule other possibilities out. I have seen endocrinology, neurology and rheumatology, gasto,falls and blackout in the last year to rule secondary causes out. They think mine was postviral. Unfortunately the system has many flaws and is very fragmented. I would absolutely insist on a tilt test. Keep persisting. Also maybe have a look at this.It may help. I really don't think its normal to be blacking out everyday. Hope you get some answers. http://www.potsuk.org

Ailbhe72

Also if you have already been to Falls and Blackout -just ring them directly and tell them whats happening and ask for the tilt test. I know they are quick to discharge you in there (i've been discharged twice!) but they should see you again if things are not improving. They are also quick to give a psychological reason too but if you can ignore that the main thing is getting the test. Apparently there is a POTS specialist in Blackrock Clinic, but of course its private- may be worth a ring though. Good luck with it all.

teelady

Hi Ellie,

I wonder would this help at all...


http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet

EllieMay1969

Thanks Teelady. Great to have you in my corner. I will look at that link in detail.

Thanks to everyone's suggestions. We had bloods done this morning for all the usual and now glandular fever in case this is the reason for her extreme lethargy. However I do not expect anything to come back in them. We will be seeing the doctor next week so unless there is something significant in the bloods for us to work with we will be asking for the tilt test. Even though we have been to the Falls & Blackout Clinic before and the Cardiologist did a sit low down BP then a jump up and stand BP I still feel that it was considerably slower that if it was been doing electronically. I may be clutching at straws but hay.. I have nothing else to clutch to right now & one of those straws you guys are handing me will lead to the real answer. So thank you and keep coming with the suggestions. Its you the people with the experience that have the knowledge I need. GP only has general book knowledge unless they have had a patient with the specific problem. properly diagnosed and treated, which obviously our GP practice hasn't had yet.

Thank you evereybody again.
Ellie

EllieMay1969

Yesterday was a great day for us. I know this is going to sound awful, but what was so great about yesterday, was that quite by chance my husband got talking to a woman who has a daughter experiencing the same problems as our daughter. Like us the doctors don't have any answers for them. Now I know they are not the only two in the country with this problem so please if you know anybody with these symptoms please ask them to get in touch as we would like to hear other peoples experiences and maybe between us all we can get a diagnosis for our children. If you have had these symptoms in the past and have a diagnosis please share so we have a direction to move forward in.

List of main symptoms are as follows. Please note these are my Daughters symptoms. Others may not have all but may have something to add to the list.
Headache - always there but can vary in severity.
Random blackouts/drop attacks, where you are fully aware (eyes closed) but cannot respond.
Can happen without any warning or sometimes you know its going to happen just before you drop.
Eyes roll up into head.
You are more sensitive to touch when you are blacked out.
Voices seem louder when you are blacked out.
Days of extreme tiredness at a time.
Times of extreme weakness, needing assistance from room to room.
Difficulty concentrating on anything (not just school work).
Fluctuating body temperature.
Heart pounding in your chest for no obvious reason.

Before my daughter went on medication (to treat the headache) she had 10+ blackouts most days, a good day was less than 5 and a rare wonderful day she would have none.
We were initially told it was school avoidance, since she is now nearly 19 school is not compulsory but she wants to do hear leaving cert as she wants to go to college. But they are still saying it is avoidance (conversion disorder/dissociative disorder). My understanding of psychological disorders is there has to be something in common to trigger the attack.

My daughter has had attacks in shops, at friends having fun, on the way to the bathroom,
at a roller skating party (yes while skating, fortunately she felt a bit off and managed to stop before she dropped),
at a birthday party while talking with her younger cousins, at school, at youth theater, in the bath, while cooking,
arguing with her sister, after having disagreement with a parent, at the top of the stairs,
while talking to people, sitting outside watching kids playing, walking out of the cinema and by the pool on holidays.
So I am sure you can see some of those situations are happy, fun times, others are not so happy/fun and some are just run of the mill basic everyday things.

So once again please help with any information you have. We need to get together to get answers for our children.

Graces7

EllieMay1969 wrote: »

Yesterday was a great day for us. I know this is going to sound awful, but what was so great about yesterday, was that quite by chance my husband got talking to a woman who has a daughter experiencing the same problems as our daughter. Like us the doctors don't have any answers for them. Now I know they are not the only two in the country with this problem so please if you know anybody with these symptoms please ask them to get in touch as we would like to hear other peoples experiences and maybe between us all we can get a diagnosis for our children. If you have had these symptoms in the past and have a diagnosis please share so we have a direction to move forward in.

List of main symptoms are as follows. Please note these are my Daughters symptoms. Others may not have all but may have something to add to the list.
Headache - always there but can vary in severity.
Random blackouts/drop attacks, where you are fully aware (eyes closed) but cannot respond.
Can happen without any warning or sometimes you know its going to happen just before you drop.
Eyes roll up into head.
You are more sensitive to touch when you are blacked out.
Voices seem louder when you are blacked out.
Days of extreme tiredness at a time.
Times of extreme weakness, needing assistance from room to room.
Difficulty concentrating on anything (not just school work).
Fluctuating body temperature.
Heart pounding in your chest for no obvious reason.

Before my daughter went on medication (to treat the headache) she had 10+ blackouts most days, a good day was less than 5 and a rare wonderful day she would have none.
We were initially told it was school avoidance, since she is now nearly 19 school is not compulsory but she wants to do hear leaving cert as she wants to go to college. But they are still saying it is avoidance (conversion disorder/dissociative disorder). My understanding of psychological disorders is there has to be something in common to trigger the attack.

My daughter has had attacks in shops, at friends having fun, on the way to the bathroom,
at a roller skating party (yes while skating, fortunately she felt a bit off and managed to stop before she dropped),
at a birthday party while talking with her younger cousins, at school, at youth theater, in the bath, while cooking,
arguing with her sister, after having disagreement with a parent, at the top of the stairs,
while talking to people, sitting outside watching kids playing, walking out of the cinema and by the pool on holidays.
So I am sure you can see some of those situations are happy, fun times, others are not so happy/fun and some are just run of the mill basic everyday things.

So once again please help with any information you have. We need to get together to get answers for our children.

all prayers and skill and courage to you...a brave and loving mother

just sad i will not be allowed to be here to hear of your progress but prayer i mighty

many of us have fought a you are doing with illnesses not understood. hard battles..

all blessings and strength.... fight on!

Dreannz

You should really demand a tilt table test. I have POTS and it sound just like what you are describing

EllieMay1969

Thanks Dreannz. We are writing to the Cardiologist that saw her last year asking him to see her again or simply to arrange the tilt test and the exercise ecg.

kangaroo

EllieMay1969 wrote: »

Yesterday was a great day for us. I know this is going to sound awful, but what was so great about yesterday, was that quite by chance my husband got talking to a woman who has a daughter experiencing the same problems as our daughter. Like us the doctors don't have any answers for them. Now I know they are not the only two in the country with this problem so please if you know anybody with these symptoms please ask them to get in touch as we would like to hear other peoples experiences and maybe between us all we can get a diagnosis for our children. If you have had these symptoms in the past and have a diagnosis please share so we have a direction to move forward in.

List of main symptoms are as follows. Please note these are my Daughters symptoms. Others may not have all but may have something to add to the list.
Headache - always there but can vary in severity.
Random blackouts/drop attacks, where you are fully aware (eyes closed) but cannot respond.
Can happen without any warning or sometimes you know its going to happen just before you drop.
Eyes roll up into head.
You are more sensitive to touch when you are blacked out.
Voices seem louder when you are blacked out.
Days of extreme tiredness at a time.
Times of extreme weakness, needing assistance from room to room.
Difficulty concentrating on anything (not just school work).
Fluctuating body temperature.
Heart pounding in your chest for no obvious reason.

I have all the symptoms, except symptoms relating to blackout, from ME/Chronic Fatigue Syndrome.

Some people, particularly younger people, faint with ME/CFS but most people sit or lie down to stop it happening (and often don't spend too much time upright). I don't spend too much time upright myself: 10-15 years ago, I'd tend to restrict standing to maybe 30-60 seconds, but now I can stand a lot longer occasionally (I don't know if the improvement in this is to do with putting on weight and my blood pressure rising). I still spend nearly all day every day sitting or lying down.

I agree with others that getting a tilt test sounds useful. POTS and Neuromediated Hypotension (NMH) can be tested by such a test. These (NMH and POTS) can be part of ME/CFS, conditions on their own or parts of other disorders that affect the autonomic nervous system.

EllieMay1969

Thanks Kangaroo.

Its great to hear from anybody with similar symptoms. Usually when my daughter feels a blackout coming on there is nothing she can do, sometimes she can't even move to a safer location.

Last Friday she had a blackout in friends shop. She had been talking with us picked up something to show me and as I was looking at it I saw her start to sway. I told her to sit down but she just stood staring at me. I knew then that it was too late. She was going to drop and there was nothing we could do. The problem was, that behind her was a table full of crystals in a perspex container, the corner of which was sticking over the edge directly in her path and I could not get behind her to redirect her fall. So I had to grab her from in front and try to ease her down without falling on top of her. That was quite difficult since we are nearly the same height. But if I hadn't noticed what was going to happen she could have been badly hurt.

We mentioned ME & CFS to GP last week and she said there is no test for either. That it is basically diagnosis by elimination of other illnesses. This to me sounds like what they have done with sending her to psychology. But we have to keep going until they decide otherwise. Cause if we don't then it will be her that didn't engage in getting herself better. It will never be that they got it wrong.

Pretzill

EllieMay1969 wrote: »

Yesterday was a great day for us. I know this is going to sound awful, but what was so great about yesterday, was that quite by chance my husband got talking to a woman who has a daughter experiencing the same problems as our daughter. Like us the doctors don't have any answers for them. Now I know they are not the only two in the country with this problem so please if you know anybody with these symptoms please ask them to get in touch as we would like to hear other peoples experiences and maybe between us all we can get a diagnosis for our children. If you have had these symptoms in the past and have a diagnosis please share so we have a direction to move forward in.

List of main symptoms are as follows. Please note these are my Daughters symptoms. Others may not have all but may have something to add to the list.
Headache - always there but can vary in severity.
Random blackouts/drop attacks, where you are fully aware (eyes closed) but cannot respond.
Can happen without any warning or sometimes you know its going to happen just before you drop.
Eyes roll up into head.
You are more sensitive to touch when you are blacked out.
Voices seem louder when you are blacked out.
Days of extreme tiredness at a time.
Times of extreme weakness, needing assistance from room to room.
Difficulty concentrating on anything (not just school work).
Fluctuating body temperature.
Heart pounding in your chest for no obvious reason.

Before my daughter went on medication (to treat the headache) she had 10+ blackouts most days, a good day was less than 5 and a rare wonderful day she would have none.
We were initially told it was school avoidance, since she is now nearly 19 school is not compulsory but she wants to do hear leaving cert as she wants to go to college. But they are still saying it is avoidance (conversion disorder/dissociative disorder). My understanding of psychological disorders is there has to be something in common to trigger the attack.

My daughter has had attacks in shops, at friends having fun, on the way to the bathroom,
at a roller skating party (yes while skating, fortunately she felt a bit off and managed to stop before she dropped),
at a birthday party while talking with her younger cousins, at school, at youth theater, in the bath, while cooking,
arguing with her sister, after having disagreement with a parent, at the top of the stairs,
while talking to people, sitting outside watching kids playing, walking out of the cinema and by the pool on holidays.
So I am sure you can see some of those situations are happy, fun times, others are not so happy/fun and some are just run of the mill basic everyday things.

So once again please help with any information you have. We need to get together to get answers for our children.

Hi Elliemay

As someone who searched for many months to find a diagnosis I understand the compleye frustration associated with it - harder still that it's your child.

This is a complete shot in the dark as POTS as described by others seems like a logical lead. It was only when you said that you found another girl with similiar symptoms that it got me thinking along the lines of vaccine side effects. I know there were two vaccines for h1n1 (swine flu) in 2009 and one of them showed narcolepsy as a side effect in some children and teenagers - narcolepsy can include catoplectic (sic) attacks where even whilst at action - talking, walking etc the sufferer can drift off - and extreme fatique is also another symptom.

This is a complete shot in the dark - so please forgive me if I'm out of line suggesting it but just thought I'd mention it.

EllieMay1969

Thank you for your input Pretzill. You are not out f line at all. My daughter has been tested for narcolepsy even though she didn't have the swine flu vaccine. But her sister had the swine flu so it was a possibility. The test was clear. But if she was tested yesterday I am not so sure it would have been the same result as she was falling asleep all day. But there lies the problem, she has good days and bad days so if tests are done on a good day the results may be very different to tests being done on a bad day. But unfortunately test have to be booked in advance and if she is having a bad day I cant get her to hospital for the tests so we do all that we can to maximise the possibility of her being well enough to attend for the tests. This means her doing zero for the 3 or 4 days in advance of tests.

Now that I have put this down in writing I think I will have to rethink that strategy. But I don't know how to manage getting her to tests if she is unable to function enough to get there without being carried (which I cannot do) and an ambulance will only bring her to local hospital which is not where any tests needed can be carried out.

Time to put the thinking cap on again.

Thanks for your thoughts Pretzill.