Difficulty getting diagnosis

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.

EllieMay1969

Its been a while since I was on, things have been very busy with my daughter. Her balckouts came back with a bang (literally) and we were back to the beginning with watching and being on the alert to catch her when she dropped.
A friend of a friend suggested we bring her to an Herbalist as someone she knew had a similar situation and Doctors couldn't seem to resolve it, but this Herbalist did and thankfully this girl is back living a normal life now.

So we made the call and got an appointment in Mid October. On arrival at his premises my daughter had one of her episodes and dropped to the floor in a semi-consious state. (semi-consious as in while she is totally un-responsive to anything she is fully aware of everything). The Herbalist saw this and asked me the usual questions about what had been going on. When she came round, he got a chair for her and started asking a few questions.

Now this is where it was very different to anybody else she had seen, he listened to her answers and accepted them as being a true account of events. All the while he was studying her, and then he asked me to stand behind him and look at her, specifically her neck on one side, it was swollen. I had noticed this before, but she often complained of sore throat & ear ache that the GP put down to viral as no infection was obvious. The Herbalist said it was a disc in her neck and recommended she see a Chiropractor. He also gave her some herbs to help her body to heal after all it has been through.

He recomended a specific Chiropractor and even made the appointment with him before we left that day. I was partly delighted that he was so helpful, but I must admit I was also concerned that we were just running around from one to another handing out more money for nothing again.

Anyway 2 days later we went to the Chiropractor, who asked the usual questions again, examined her, then took 2 xrays. He checked the xrays and then took a 3rd at a slightly different angle, he did this because he didn't have a clear view of the Atlas (C1 - the top disc) Then he showed us the xray. Not 1 but 2 discs stuck in the wrong place. The Atlas putting pressure on the brain stem.

According to him all her symptoms can be caused by this. She has been attending him since Mid October and her quality of life has improved bit by bit. We still have a long way to go but at least now we have days without blackouts and a bad day is 5 blackouts instead of a normal day being 10+. Her headache is still there but improved on the pain scale from 9.5 most days to an average 4.5/5.5 with only the occassional 8+

She is still taking the herbs and seeing the Chiroractor who says the healing will take some time as the injury wasn't picked up and dealt with sooner. But there is a very positive outlook, at this stage there is no guarantee that she will ever be totally blackout free, but if they are only occassional then she can get on with her life.

The future is looking much more positive than my last visit here and I wanted to share that with all of you. Thanks for all the support and advice. All advice has been taken on board and if this is not the answer we will move onto the next thing until she is able to get on with her life. So any ideas are still very welcome. Many thanks again.

Happy New Year to you all

princess-lala

EllieMay that is fantastic news, i have been following your story all along.

Lets hope she's on the up now

EllieMay1969

Thanks princess-lala we hope so too.

Bumbler

Hi,

Your daughters symptoms sound very familiar.

I had on and off mini blackouts as a child. I'd come around within seconds. Diagnosis at the time was mild kidney issues. Always very pale with black circles under the eyes.

Symptoms seemed to subside in teenage years but I always felt weak and tired and kidney condition sorted itself out.

Adulthood my systems came back with a vengeance, dizzy spells, black outs, numbness in my body and chronic joint/limb aches/pains and headaches which I had never suffered from before. I had numerous tests done in hospital but they were at a complete and utter loss as to what was causing the issues. My GP became tired of me and described me as overly anxious.

The next stage I entered was heart palpitations, burning sensation within my body and a chronic sore throat or what I perceived to be a throat infection that lasted five years. I'd no answers from my GP and he was constantly dismissive.

I finally moved GP and new doctor decided to test me for celiac disease. Test came back negative so I was sent for an endoscopy. It was found my stomach was highly inflamed and I was prescribed antacids.

Symptoms continued and I got so tired of feeling the way I was feeling that I went to a reputable food intolerance company. Within a couple of days I got my results and found I had an exceptionally high intolerance to a particular food item and that I should investigate this further with my GP. I went back to GP and told him what I had found out and he though it couldn't be possible as I had no rash, swollen lips etc. An allergy test was ordered and guess what I have a serious allergy.

No more heart palps, sore throat, pains, blackouts etc.

I'm not saying this is what is wrong with your daughter but it could be an avenue that you could look down too.

I had to insist on it but finally got there in the end.

Best of luck.

LegacyUser

Hi Ellie,

It's Teelady (i deregistered - i recommended book by famous neuro to you in a PM - to prove it's me!!!)

I'm delighted for you and your daughter. Such a simple thing!!!

May i just advise that you bring the xrays to a dr and get an mri of the area. IT is possible to surgically trim some of the discs or alleviate pressure etc. I realise you are using a chiro but it is very easy to push the wrong thing in that area and cause a stroke or worse.

Now that you have physical proof you won't believe how differently you'll be treated.

All the best xxx

LegacyUser

PS forgot to say - don't let them x ray her neck anymore - the chiro might do it to see if the discs have moved etc.

The thyroid gland is in the neck and the radiation will affect it. Ask me how i know - in the 80s i fractured my neck - 20 xrays at least as i one said broke, one said cracked etc. My thyroid gland withered and it took years to diagnose and get it sorted.

Just in case.... there is no radiation in an MRI scan. There is in a CT scan.

Tee

elecktras weather bomb

delighted for you all. getting the diagnosis is half the battle may she truly blossom now .all the best to you all for the future x

Graces7

Grand news and thank you for the update. Make me so angry though that something so physical and obvious was missed like that in such a vibrant young life.

Graces7

Talking to wise family; laser surgery can fix this IF you can find a laser surgeon here..

sleepyheadh

Herbalist and a chiropractor! For the love of god woman bring your child to a Doctor. Don't let your daughter fall victim to your stupidity.

sleepyheadh

guest777 wrote: »

PS forgot to say - don't let them x ray her neck anymore - the chiro might do it to see if the discs have moved etc.

The thyroid gland is in the neck and the radiation will affect it. Ask me how i know - in the 80s i fractured my neck - 20 xrays at least as i one said broke, one said cracked etc. My thyroid gland withered and it took years to diagnose and get it sorted.

Just in case.... there is no radiation in an MRI scan. There is in a CT scan.

Tee

That's great advice! (Sarcasm, by the bye). You are such an eejit I dont even know where to start. I reported your comments, and hopefully no one is stupid enough to follow your advice.

sam34

sleepyheadh, no personal abuse/insults, as per sitewide policy.

sleepyheadh

sam34 wrote: »

sleepyheadh, no personal abuse/insults, as per sitewide policy.

Anything to say about the comment i was replying to Sam34?

Graces7

ellie .. a huge thank you for reminding us that drug based Western medicine is only one way to treat illness and is very limited and can be faulty. Your openness in your seeking help for your daughter is a wonder and a lesson to all who will listen. It is too late for me and my finances too limited for me to seek any alternative treatment and I am at peace with that and have forgiven the past but am saddened by your daughter's experience. Drugs cannot solve everything ... scarey to read here eg the stilnoct thread.. I went down that road then decided no more....Hopes and prayers that your daughter will continue to make progress and that her life will widen and be more at peace. You have helped me more that you will ever know and I wish I could do more for you

Graces7

guest777 wrote: »

PS forgot to say - don't let them x ray her neck anymore - the chiro might do it to see if the discs have moved etc.

The thyroid gland is in the neck and the radiation will affect it. Ask me how i know - in the 80s i fractured my neck - 20 xrays at least as i one said broke, one said cracked etc. My thyroid gland withered and it took years to diagnose and get it sorted.

Just in case.... there is no radiation in an MRI scan. There is in a CT scan.

Tee

Wise advice and thank you. Reminds of the "Chernobyl necklace" effect

sleepyheadh

Graces7 wrote: »

Wise advice and thank you. Reminds of the "Chernobyl necklace" effect

Yes you are correct! If that poor girl has a couple of thousands more X-rays she might very well be exposed to the same amount of radiation as those involved in Chernobyl. AP cervical spine XR = 0.12mSv, while those within 30km of Chernobyl were exposed to anywhere from 1000mSV-6000mSv of radiation.

She should probably never go on holiday either, because of all that radiation you are exposed to at high altitudes!! I bet you haven't left the country in years.

I have been banned from this site several times, for bringing up the notion of medical advice. Whereas, you are able to spout utter nonsense not based on any medical knowledge, (or in fact any knowledge by the looks of it.)

sleepyheadh

Graces7 wrote: »

ellie .. a huge thank you for reminding us that drug based Western medicine is only one way to treat illness and is very limited and can be faulty. Your openness in your seeking help for your daughter is a wonder and a lesson to all who will listen. It is too late for me and my finances too limited for me to seek any alternative treatment and I am at peace with that and have forgiven the past but am saddened by your daughter's experience. Drugs cannot solve everything ... scarey to read here eg the stilnoct thread.. I went down that road then decided no more....Hopes and prayers that your daughter will continue to make progress and that her life will widen and be more at peace. You have helped me more that you will ever know and I wish I could do more for you

So if your in a car crash in the morning, will I call the shaman, the witch doctor or the person who has actually been trained in treating you?

Nettle root won't reattach your arm!

Graces7

sleepyhead I added you to my ignore list after your first attack.. welcome!

sleepyheadh

Graces7 wrote: »

sleepyhead I added you to my ignore list after your first attack.. welcome!

Ah I see, do you also ignore logic and science?

EllieMay1969

Tee Lady its great to hear from you again. Graces 7 lovely to hear from you again too.
It is great to hear from all of you. Sorry I am terrible with all your names and if I scroll back I will lose what I have typed (again).

Thank you to everybody who offered, advice medical or alternative, and support. Thank you for sharing your stories and helping me & my family, to not feel so alone on this difficulty journey.

All suggestions are still greatly appreciated and are all taken onboard and seriously considered. Nothing is dismissed without consideration, despite the words of the only person to be negative and abusive on this thread.

For you who has been so negative.. I offer you this advice....read carefully before you comment...buzz words do not give the full picture....my daughter is a person not a lab experiment. I most sincerely hope you never have to go through anything like what we have gone through for the past 3 years. If the situation, happened that you found yourself in similiar shoes I hope your narrowmindedness does not cause you regret.

I have no regrets in my actions and am thankful for the support from everybody.

To everbody else Thank you again & I will stay in touch with updates on her progress.

May the Gods Bless you all with Good Health.

BlueFairy

Hi EillieMay, I'm glad your daughter has had some relief from this problem, it sounds like you've been through quite the ordeal these last few years.

Did she ever get tested for POTS? I'm curious as I knew someone who has it and fainting was a regular problem for her.

If you do think that the chiropractor is right and that a bulging disc might be the issue, then please consider having her checked out by a physiotherapist or a doctor who will do an MRI. The neck is a very important area, with so many nerves and arteries running through it, you have to be incredibly careful with it.

While the chiropractor may help, good physio therapy or treatment in a hospital may help her in the longer term and avoid any further problems in the future. You may find with a chiropractor that you have to keep continually going in order to get relief, but other solutions will offer you longer term help. It would do no harm to have her neck looked at thoroughly. If she has a bulging disc then there is some lifestyle advice that a physio will be able to give too, such as not spending too long looking down at her phone or using computers in bad posture, or even trying yoga to stretch her muscles gently.

I know the chiropractor is helping, and that it's the only real support you've gotten so far. But I'd urge you to look into it thoroughly, a bulging disc is something that needs to be treated carefully. Hope your daughter continues to improve.

EllieMay1969

Thank you Blue Fairy. My sister is a physiotherapist and I have spoken to her about the Chiropractor and we have the xray from him.

We will be back at the GP in the next few weeks for her check up and will be bringing the xray with us. More to ask why it wasn't spotted (or even looked at) with all the xrays, mri's & ct scans she has had done over the last 3+ years.

I have researched and there have been surgical suggestions from other friends & family too, but for now she wants to stay with the chiropractor. Part of that I know is that he is treating her like a human being who wants to get her life back rather than one of many he has to see today. Also when she felt she had dislodged the disc a few days after seeing him, she got an appointment withing a few days even though she had an appointment for 3 weeks time. Previously she had requested an appointment with her neurologist as the side effects of the meds were becoming a big problem. It took a letter from GP, a letter from her and 3 phone calls over a 2 month period and eventually we got an appointment for 2 months later.

There is a bit of a difference there in how she is being treated. For now she is having great relief, pain level is decreasing and blackouts are not so frequent as they were. We now have days without any at all and a bad day is 5 blackouts as opposed to an average of 10 a day.

But thank you for your advice. As always it is greatly appreciated and will be taken onboard. Afterall that's why I am writing this, I am so exhausted and frustrated with the system that sometimes I am afraid I am not able to process all the options or even all the questions I need to ask. But you and the others who comment here have been a great help in keeping me sane and focused. Thank you again.

BlueFairy

Really glad to see that you guys are continuing to work with your daughter's doctors along with the complimentary health stuff EllieMay. It sounds like you're on top of everything and she's being well looked after. Hopefully there will eventually be a complete solution for her

Having been through the medicine mill myself in the last few years, I have an idea of what you guys must be feeling seeing doctor after doctor and getting nowhere. It's no surprise that people turn to alternative medicine, when they meet so many barriers to simply trying to get help. I think a big part of it is just having someone who will sit down, talk to you like a human being and look at your health as a whole.

EllieMay1969

Hi BlueFairy, I totally agree with you. After all there is a medical area that should have seen this. The evidence is on an xray of her neck. The correct medical people should also have known to look like the Chiropractor did. The real difference is he listened to what we were saying and he looked for a cause, the medical people simply took one or two symptoms that fit a certain illness and when she didn't have that they dismissed her and her other symptoms. And yes in a sense they were right that its not an illness or a disease, its a structural problem. To be honest with all my research I didn't come up with that option, but I am not a trained medical professional.

The probelm in this country is they don't look beyond the common causes/ailments. Anything that doesn't fit the common conditions is now sent to Psychiatry. Even the private Psychiatrist said he was fed up of getting referrals simply because it didn't fit a certain condition. He was convinced from day one that there was a biological cause to her problem and has stated so in his letter. And he could have creamed us for €150.00 per visist if he just went along with the HSE. But thankfully he has morals and didn't take advantage of us.

Graces7

EllieMay1969 wrote: »

Hi BlueFairy, I totally agree with you. After all there is a medical area that should have seen this. The evidence is on an xray of her neck. The correct medical people should also have known to look like the Chiropractor did. The real difference is he listened to what we were saying and he looked for a cause, the medical people simply took one or two symptoms that fit a certain illness and when she didn't have that they dismissed her and her other symptoms. And yes in a sense they were right that its not an illness or a disease, its a structural problem. To be honest with all my research I didn't come up with that option, but I am not a trained medical professional.

The probelm in this country is they don't look beyond the common causes/ailments. Anything that doesn't fit the common conditions is now sent to Psychiatry. Even the private Psychiatrist said he was fed up of getting referrals simply because it didn't fit a certain condition. He was convinced from day one that there was a biological cause to her problem and has stated so in his letter. And he could have creamed us for €150.00 per visist if he just went along with the HSE. But thankfully he has morals and didn't take advantage of us.

Thank you for this. And you are so right in your last para. This has not changed since i was first ill some forty year ago. Hopefully now you will get some rest. The part I have bolded is almost word fro word what I was writing today to an old friend about my own history and I am over 70 now and that was forty years ago and in the UK

Pretzill

Ellie May it's good to hear your girl has at last got a cause for her symptoms. I wish her a strong recovery.

BlueFairy

Graces7 wrote: »

Thank you for this. And you are so right in your last para. This has not changed since i was first ill some forty year ago. Hopefully now you will get some rest. The part I have bolded is almost word fro word what I was writing today to an old friend about my own history and I am over 70 now and that was forty years ago and in the UK

It has unfortunately been my experience with a large chunk of doctors I've seen over the last few years too. They try to fit you into a certain list of symptoms for a particular problem, if you don't then it's outside their understanding and you're considered anxious or stressed. They tend to do things by the book rather than have a holistic look at everything that's happening.

In my case fortunately I eventually got correct medical help, but it took a long time of feeling like I was a crazy person until that happened. It's incredibly frustrating to come up against it, when all you want is to feel well again.

Graces7

BlueFairy wrote: »

It has unfortunately been my experience with a large chunk of doctors I've seen over the last few years too. They try to fit you into a certain list of symptoms for a particular problem, if you don't then it's outside their understanding and you're considered anxious or stressed. They tend to do things by the book rather than have a holistic look at everything that's happening.

In my case fortunately I eventually got correct medical help, but it took a long time of feeling like I was a crazy person until that happened. It's incredibly frustrating to come up against it, when all you want is to feel well again.

So sorry to read this. And so glad you are safe now..I am thankful indeed that there are no longer the huge mental hospitals were they dumped folk like me back in the days of my youth. I have learned to forgive for my own peace of soul but the trust has gone forever. Ellie may daughter is blessed to have a mother who has the skill and courage to fight for her. Many of us do not have that. Last year when I shattered my wrist in a fall I trusted perforce and have a badly deformed wrist to show for it now.They offered me benzos for the pain also! Even something that simple...My family now have power of attorney to protect my safety and peace of mind.. if you read the thread here re a dr refusing to treat a depressed patient..

EllieMay1969

Hi All I just wanted to update my supporters on how things are going with my daughter. While she got some relief from the chiropractor her problem has not completely resolved and we hit a brick wall with her Neurologist - he is stuck on the psychology angle and not open to any other possibility. He states she has migraine but that's not the cause of her blackouts, she needs to engage with psychology. Despite the fact that there was no psychologist in our area and therefore we went private, to be told that in their opinion this was not a psychological issue.

Anyway leaving him aside we kept looking and got a referral to an ENT Consultant, who witnessed a blackout while he was doing a test and he said its not a typical vertigo attack, but to him it looked Neurological. He referred her to a Neurologist that he has worked with and we got an appointment within a month.

We saw the new guy on Monday 15th and he said 2 tests have to be done. One being the TILT test that you allknow from my previous posts we have gone to get done twice before but the hospital decided it was not necessary. Well now he Neurologist is requesting it in another hospital. So that is great news. The other being a 48-72 hour video EEG.

On top of that he has suggested she increase her salt intake to aid increase in fluid in her body and also to increase her water consumption. She is also to wear support tights as he suspects that the blood vessels may be widening and causing a drop in blood flow to the brain, causing her to collapse. He says that recovery from this can take seconds to a few minutes to half hour and even in some cases up to 2 hours as has happened with her. Does this treatment look familiar to that for PoTS. He is also treating her migraine and wants to see her back in 2 months, hoping that the tests will be done by then too. Other Neurologist who she saw only 3 weeks ago doesn't want to see her for a year. I don't think we will be going back to him.

Thanks for all your support up to now. I will keep you posted on her progress.

EllieMay1969

Things have improved greatly, my daughter has had only 1 blackout, since my last post on 21st June 2015 and that was on July 1st.
Her headache also has improved a bit, not gone completely but improved and she is up most days around 10am and is usually able to do something around the house or come into town with me to do a bit of shopping or meet friends for a cuppa. So in short life has definitely improved. We also had a great holiday completely blackout free and she even walked about 1km some evenings to go to her favourite chinese restaurant and walked home again.

On top of all this improvement, one of the 2 referrals the new Neurologist sent off has come back and we saw the specialist on Tuesday July 28th (could have seen him on 10th only we were on holidays). He took all the history, did the usual neuro checks and said that she was in very good health , aside from these blackouts and the headaches. He then looked at previous scans and even showed and explained them to us. After all of that, he said she did indeen need to be monitored in the Epilepsy Unit and the National Epilepsey Unit in Beaumont is the best place to do this. He has put her on the list and hopes that she will have an appointment before end of October. However if she remains episode free, he will just move the appointment back a bit so that she is still on the list if the episodes come back. I am not sure what happens if they don't come back, do they intend leaving her on this medication for life without a diagnosis or will they take her off it and see what happens. I guess that is the next question in a few months time. Its nice to think that maybe we are at the end of it. Fingers crossed and keep praying. But I feel good about the progress at present.

Thank you all again.

EllieMay1969

We have had further development in our daughters condition. After years of trying to get the tilt table test done it finally happened last week. A week ago today, was the scariest day of my life so far. My daughter was on her 90th day blackout free, on her new medication, so I really didn't expect her to have one during the tilt table test. For those who don't know what this is. Basically you are strapped onto a table/bed hooked up to an ecg and blood pressure monitor. They also put a line in so if they need to administer any meds they can do so quickly. The first 10-15 minutes of the test you are lying down and then you are tilted to approx 70 degrees for a further 45 minutes or until something happens whichever comes first.

The first 15 minutes was uneventful, although I did think her heart rate was a bit fast since she was just lying there doing nothing. However there was a doctor in attendance all the time so I presumed if that was of concern he was taking notes. Then the table/bed was tilted and again we watched and chatted. All was going fine. She had been instructed to let the doctor know if she felt in any way unwell. ten minutes left in the test and as I said I was sure nothing was going to happen.

I was watching her heart rate and it fluctuated between 85 and 120 bpm. I was also watching her for any signs that there was anything wrong. Then the following events happened in seconds. Heart rate 88bpm, she says "I don't feel so good", heart rate 66bpm, I ask if she is ok, no response, head falls to one side, heart rate 45bpm, alarm sounds, nurses shouting instructions, heart rate 34bpm. Later when all was calm and my daughter was back from her blackout. We were told her heart dropped to 26bpm. Now we know why she has been blacking out for almost 4 years.

The lesson her to anybody who feels they are being fobbed off and not taken seriously...stick to your guns...keep looking...eventually somebody will look properly and find out what is wrong.

Pretzill

Jeepers Ellie May that sounds shocking for your daughter but I suppose also that at last she's on the right track to discovering what's wrong. Did they give you a diagnosis?/and is it cardiac related?

Whichever, I do hope that they can treat her now and the blackouts will diminish - such a frightening thing and such a long wait to get to the bottom of it all -

EllieMay1969

Thanks Pretzil,
It surely has been a long journey and I fear it is not over yet. She has been given medication to slow her heart down, but unfortunately she has had 2 blackouts since Friday and her last blackout was on July 1st (not counting the one during the test). This has been quite upsetting for all of her, naturally her most of all. She suspects that the medication may have reduced her heart rate too much. I have just emailed her neurologist and her cardiologist. Back to the waiting game for now. But we do have an appointment with the Cardiologist next week. I am hoping that someone will get back to me today to advise on a course of action.

I will keep the thread updated when there is news.

Dreannz

Was she diagnosed with pots after tilt table test. Glad you are getting answers

nikkibikki

Just read through this thread now. Wow, OP, ur daughter is lucky you've kept fighting for an answer.

My aunt, incidentally also called Angela, was diagnosed with a condition called pre syncope after her tilt table test. Her BPM went that low too. She has since been fitted with a pacemaker and things have improved a lot over the last 2 yrs or so but she'll never be 100%.

Glad I came across this thread. My GP diagnosed me with Muscle Tension Type headaches last week. He told me to Google it. I did and am not convinced that's what i have and after reading this i'm thinking he has forgotten about the MRI of my neck he convinced me to pay €200 for a few months ago that showed some of the upper discs are under pressure. I didn't join the dots but surely he should have. I've a few medical issues myself and not convinced I am being giventhe correct diagnosis but I don't think I've much hope of getting it either. Where are these docs like in Greys Anatomy and the like who actually give a sugar!

Oh OP, I hope u reported that rude, obnoxious neurologist who said she was faking it!

EllieMay1969

Hi nikkibikki.

Sorry I haven't replied to your post until now. It has been rather hectic here and I haven't gotten onto this site.

My advice to you if you are still getting those headaches is to keep looking for an answer. As you said when you looked up the tension type headaches they didn't quite fit.

We have no resolution on Angela's condition yet but at least now we know that her heart is playing a part in what is happening.

Have you considered a Chiropractor to look at those discs. Angela had some disc problems too and went to a Chiropractor and got a considerable amount of relief from his intervention.

Hope you are feeling better.