Difficulty getting diagnosis

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.

LegacyUser

Have you researched Lyme Disease?

It is mainly known in America but it is increasing in Britain and Ireland.

All the best,

A guest

EllieMay1969

Hadn't researched Lyme disease until now. It is another posibility. A healer we met at a Holistic & Physic Fair told us she had toxins from a tick bite. Which I see from the research is how one gets Lyme Disease. He is arranging drops for her so I hope they will work.

BlueFairy

EllieMay, if she does have lyme she will need more than the drops to help her with it. A proper lyme test through your GP is the best way to go, it's a serious illness if left untreated so better be safe than sorry.

Were you able to follow up on the POTS tilt test?

EllieMay1969

Thanks BlueFairy

We are waiting on the Cardiologist to get back to us re tilt table test. We are also waiting for an appointment with neurologist to relook at various forms of epilepsy that do not show up on an eeg.

And yes we will be going back to gp for the proper test for lyme disease, but meanwhile since traditional medical avenue has not been much help we are trying alternatives. And I must say this guy has been spot on with the gluten intolerance as she has found that she has much less stomach cramps and sick feeling in her stomach since she stopped the gluten.

Thanks for your post.

BTW do you know anybody with her symptoms?

Dreannz

Keep following up on the tilt table test.tell them it's urgent .Get your gp to phone it might speed things up.
Also I have spent thousands in the past on doctors and alternative avenues looking for help and I wish I hadn't. I wish I had that money know to treat the condition I eventually was diagnosed with. So don't get too swallowed up by it.
I find reducing gluten in my diet improved energy and stomach symptoms although I am not coeliac.
It's good she is getting some relief from some symptoms

EllieMay1969

Thanks Dreannz.

I followed up with the Cardiologist today and he has written 2 letters to other specialist in relation to Angela. I don't know where it will go from here but according to his secretary he is consulting with others for advice. At this point I choose to consider it a positive step.

Can I ask how long it took for you to get a diagnosis and what your symptoms were?

LegacyUser

Hi Ellie,

http://www.neurosymptoms.org/#

I came across this site and it is well worth a read especially if the tilt table tests are negative.

It is about a new neurological illness that is gaining ground - if is not an organic illness as in a structure is "broken" as in ms or a tumour growing but an acknowledgement that what were previously classed as all in the mind has been shown on fMRIs to be a very real misfiring/misworking of the brain and nervous system.

The neurologist is in Edinburgh and if you read the 10 or so patients' stories, he seems to have huge success.

Worth a read,

All the best,

T.

In the stories section, read the "non-epileptic dissociative attacks" stories.

EllieMay1969

We have had some developments recently in relation to tests. We have an appointment in the Falls & Blackout Clinic for the 3rd September. Before attending they want a list of blood tests done. Some of which I have never heard of. I take this as a positive thing as last time she went there, they did not request any blood tests, also the appointment was 18 months from GP request to actual appointment. This time it was May we wrote to Cardiologist and September we have an appointment (only 4 months)

Lymes disease test came back negative... but I heard a lady on Matt Cooper during the week who has Lymes disease and tested positive in Germany, but when tested here in Ireland it was negative. I have heard from a number of people that the best place to get tested for it is in Germany. Does anybody know where in Germany or how to go about finding out. Forget the GP she is not interested, her recent letter to neurologist had even the facts wrong and when I read it, to me it said "The mother is being a bother so can you see the daughter to keep the mother quiet." My impression only but definitely didn't say "Please see my patient as she is not improving and needs your professional help"

Talk soon.

elecktras weather bomb

dear ellie may. took me seventeen months of sheer hell to have our eight year old diagnosed with a mild liver disorder apparently he had a lot of your childs symptoms .black outs fatigue heart racing constant sore throat .like that running to hospitals .the hospital like you believed I may be putting ideas in the childs head. doubted myself for a while.we as a family were at breaking point to know. went private to sliabh mor clinic stillorgan. I hope you don't mind me throwing something at you . GILBERTS SYNDROME. I found it very hard to accept that after seventeen mths running to casualty that my child cant be treated for his symptoms yet they would treat anxiety and depression. unbelievable . he is smart funny and not academically challenged he was treated like trash in hospital and his confidence took a hit . when he was diagnosed he was delighted and it was half the battle. he loves his sports and sometimes if he is pushes too hard or anxious about something.it can come full on but you learn what makes them comfortable , god I feel lousy on about my own child , but you need to get her billiruben checked. very common in teenagers . my heart goes out to you all .I hope to god you find the right specialist and god willing she is on the mend soon .god bless .persevere
elecktras weather bomb

EllieMay1969

Thanks Elecktras Weather Bomb

Sorry it took so long to respond. My Daughters meds were reduced with a view to changing them as the one she was on was making her so tired that she still couldn't function. Of course as she reduced in medication the blackouts returned and we seem to be back on multiple blackouts most days again. Although not as bad as before its still hard to deal with.

She is getting loads of blood tests done tomorrow and I think the one you mentioned billiruben is among them (but of course I cannot put my hand on the list now to confirm this..typical).

Anyway thanks for your input. It is a big help to me hearing from all of you. There is light at the end of the tunnel...I just don't know how long the tunnel is yet...but we will get to the end of it.

Thanks again and keep the suggestions coming in. I will not rest until my daughter is better and for that I need your help... Doctors need to be directed as they are not investigators...even consultants....unless it is obvious to them they dismiss you as putting it on..

Even her psychologist has me p***** off now. My eldest daughter rang to inform her that we would be late for the appointment as her sister was currently blacked out. She got the voicemail so left a message that we would be there asap. Unfortunatley the blackout was a long one and we didn't make it. Anyway before her time was up the Psychologist rang me to see if we were likely to make it and I told her how the headache had gotten so much worse since the meds were reduced and then the blackouts came back. I said I am sure the headache and blackouts are connected.. She said "As I said before it is the stress of it all"

Can someone please tell me what happened to pain. Is the answer to everything now..STRESS... how I hate that word.