My pre-pregnancy counselling appointment was a disaster. There’s no point in trying to pretend otherwise. I wasn’t seen by the consultant my gynaecologist referred me to see, as he was unavailable. Instead I was seen by a generic epilepsy consultant (even though I don’t have epilepsy) & an obstetrician (pregnancy consultant). This may have been the problem.
The appointment didn’t start well. The epilepsy consultant was under the impression that I was there to talk about thinking of having a family in the future, rather than my being 10 months into coming off my medication & this process having been 3 years in the planning. She started asking me about my ‘seizures’ which was her words, not mine. She asked me about what caused my loss of consciousness & I explained that it’s triggered by lighting. She asked me about whether stress or my hormones are a factor & was surprised when I told her they aren’t. She then told me that basilar type migraine doesn’t cause loss of consciousness & that what I was experiencing was altered consciousness. She started referring to my basilar type migraine, which has been diagnosed by one of the top consultants for my type of migraine in this country, if not the world, as ‘non-epileptic attack disorder’. Non-epileptic attack disorder is a psychological condition, which you can find some good information on at nonepilepticattacks.info. When I started loosing consciousness, I was 13. Once epilepsy was ruled out, I was incorrectly told I had non-epileptic attack disorder & that I was ‘making it up’ & ‘doing it for attention’ (though no formal diagnosis was made). We later saw a specialist in basilar type migraine, which was when we found out that it was this causing me to loose consciousness. So you can imagine that being told this by the epilepsy consultant made me feel like I was reliving a nightmare. I don’t even know why she was debating it, as I haven’t lost consciousness in 4 years, so it’s not an issue. She told me I need to use mindfulness techniques to bring myself out of an attack quicker & that they can provide that for me. There are two main issues with that. 1. I’m unconscious & 2. It hasn’t happened in 4 years because of the anti-convulsant medication I’ve been on! Grrr!!!!!!!
Not only did the epilepsy consultant try to discount my basilar type migraine diagnosis, she also tried to argue with my chronic migraine diagnosis, saying that what I actually have is chronic daily headache. Again this is not the case. I know this to be true, as I would not have been eligible to continue the Botox treatment under the NICE treatment guidelines. She also tried to discount my PoTS diagnosis by querying whether I’d had the proper testing performed, which I have. She asked me if my diagnosis had been made after a 24hr ambulatory blood pressure test & when I told her I had received full autonomic testing (which you can view in my autonomics tests vlog) her response was “oh, well blood pressure fluctuates in pregnancy anyway.” Erm… Ok! So why the question? *Face palm*. My GP had asked me to find out what would be a suitable medication to use if we need to treat my PoTS during pregnancy. I was told that we need to de-clinicalise my care & I made to feel like a drug seeker. Now, I don’t need or want medication at the moment, but I appreciate my GPs forward thinking in finding out what would be appropriate to use should we the need arise. The epilepsy consultant continued by comparing my loss of consciousness with my PTSD. If I did have non-epileptic attack disorder, I could understand this, but I don’t. My basilar type migraine is triggered by lighting & my PTSD was triggered my emotional & sexual domestic abuse. Very different! I was in shock & unable to form a coherent argument as it was the one thing I hadn’t anticipated.
Not only were the epilepsy consultant & obstetrician unable to answer any of my questions, which you can find in my Pre-Pregnancy Counselling Appointment Preparation post, they didn’t discuss all of my medications & were only interested in what I take for my migraine. The epilepsy specialist also had the nerve to tell me I should be positive because there’s a good chance my migraine will improve during & after pregnancy. This may be the case for the majority of migraine sufferers, but my migraine consultant has told me there is a 30% chance that my basilar type migraine will improve. Now, don’t get me wrong, I’d take any chance that I might see an improvement, but I don’t see how giving someone a false hope is helpful or even ethical! This woman clearly doesn’t understand basilar type migraine.
The epilepsy consultant kept telling me the best thing I could do would be not to get stressed & to stay calm. I was, before the appointment. The one thing my pre-pregnancy appointment achieved was to stress me out. Perfect! Just what I need right now – not!
So I’ve come out of the appointment terrified that the epilepsy consultant will put non-epileptic attack disorder in her report & that any medic who reads it won’t take my basilar type migraine seriously. Not only that, I’m also concerned that if my PoTS gets worse my high heart rate will be seen as anxiety. Dan said I was the most upset he has ever seen me, which is really saying something!
I have contacted my gynaecologist who referred me in the hope that he will intervene & stop an inaccurate report being written. I have documentation from my migraine specialist that confirms I do loose consciousness with my basilar type migraine & that while it is entirely possible that my migraine has contributed to my PTSD, the PTSD is not a contributing factor to my migraine or loss of consciousness, which I have sent to my gynaecologist to help him counter the epilepsy specialist.
I had such high hopes for pre-pregnancy counselling, but should have known when the appointment came for the epilepsy team that it wouldn’t go well. I don’t blame the obstetrician, she was nice enough in the way she spoke to me & was going along with the ‘specialist’ view, which is understandable. I really hope this can be sorted without further input from me, as it really is the last thing I need right now. A few people have suggested I should make a formal complaint, but I just don’t think I could handle the additional stress.
When I saw my GP about this, she was fantastic! Other than the month she returned to work post-operation, which I’ve written about in my Doctor’s Appointments: One Extreme To Another post, she has always been extremely supportive & pro-active in my care. She was very surprised that they had tried to discount my diagnosis & even more surprised that they were only interested in my migraine medication. She told me to follow up with my gynaecologist, but not to worry too much about what the repost says as I have a diagnosis from a specialist & a general neurologist can’t alter that. She also said that, while it would have been nice to have extra input, we don’t have any problems & are on track, so the disaster that was my pre-pregnancy counselling appointment won’t change our plans.
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Oh Tania, I am so sorry, what a nightmare. And what people don’t realise is how much a good hospital appointment can take out of you, let alone a bad one. How deeply frustrating and upsetting.
I hope your gynae can run interference and get you a proper appointment with someone other than the epileptic department. WHY were you even seen by them? So annoying
Thanks Jen! It really did feel like a nightmare. I’m very lucky that my GP is so supportive & thinks for herself rather than relying solely on what consultants tell her. She said it was ridiculous & that they can’t undermine diagnosis I already have. She was really reassuring. She also doesn’t agree with my PoTS consultant that I’m deconditioned, which is good as I wasn’t convinced either – particularly as she didn’t ask me about my exercise routine at all! I haven’t heard back from the hospital about this appointment, but I see my Gyne in a couple of months, so I’m sure he will step in if something hasn’t been done about the appointment already. I’m partly annoyed at myself. I knew as soon as I opened the letter & saw ‘Epilepsy Department’ that there were so many potential problems but allowed myself to be convinced that they were the best people for me to see when I phoned up & queried it. I should have stuck to my guns. Next time, & I’m sure there will be a next time during my life I will flat out refuse to see anyone involved with epilepsy & use this as an example of why it isn’t a good idea! Thank you for all your support, it means a lot. Xx
Thanks Jen! It really did feel like a nightmare. I’m very lucky that my GP is so supportive & thinks for herself rather than relying solely on what consultants tell her. She said it was ridiculous & that they can’t undermine diagnosis I already have. She was really reassuring. She also doesn’t agree with my PoTS consultant that I’m deconditioned, which is good as I wasn’t convinced either – particularly as she didn’t ask me about my exercise routine at all! I haven’t heard back from the hospital about this appointment, but I see my Gyne in a couple of months, so I’m sure he will step in if something hasn’t been done about the appointment already. I’m partly annoyed at myself. I knew as soon as I opened the letter & saw ‘Epilepsy Department’ that there were so many potential problems but allowed myself to be convinced that they were the best people for me to see when I phoned up & queried it. I should have stuck to my guns. Next time, & I’m sure there will be a next time during my life I will flat out refuse to see anyone involved with epilepsy & use this as an example of why it isn’t a good idea! Thank you for all your support, it means a lot. Xx
Im so sorry sweet heart, doctors can be asses not matter how pro they think they are. Usually the smarter they are the more up themselves they are and they less they can deal with human interaction. Keep your head up sweety <3 x
Thanks Nicole, that means a lot. I’ve got some really good Drs that are at the top of their profession, but they all acknowledge other conditions & aren’t narrow minded in their approach. It was my migraine consultant (one of the best in the country, if not the world) who spotted that I have EDS & got me referred. He then ordered the dysautonomia tests when the local hospital were being useless as he knows that troublesome migraine, EDS & PoTS are co-morbids. He was right on both the EDS & PoTS! Without his help I wouldn’t have either of those diagnosis or support in managing them. There are a lot who are so focussed on their own specialism that they fail to acknowledge or take into consideration other conditions though & this woman was definitely one of them. It’s a shame I wasn’t able to see the consultant my Gyne wanted me to. I think the appointment would have been very different if I had. Fingers crossed things will move forward more positively now. Xx
Thanks Nicole, that means a lot. I’ve got some really good Drs that are at the top of their profession, but they all acknowledge other conditions & aren’t narrow minded in their approach. It was my migraine consultant (one of the best in the country, if not the world) who spotted that I have EDS & got me referred. He then ordered the dysautonomia tests when the local hospital were being useless as he knows that troublesome migraine, EDS & PoTS are co-morbids. He was right on both the EDS & PoTS! Without his help I wouldn’t have either of those diagnosis or support in managing them. There are a lot who are so focussed on their own specialism that they fail to acknowledge or take into consideration other conditions though & this woman was definitely one of them. It’s a shame I wasn’t able to see the consultant my Gyne wanted me to. I think the appointment would have been very different if I had. Fingers crossed things will move forward more positively now. Xx
So sorry to hear your going through this hun, really hope you get somewhere soon. Don’t loose faith that things will get better & try keep your chin up. I really dislike doctors myself. XoX
Thank you Lisa, I really appreciate your support. I was so frustrated with myself, I knew there was a lot that could potentially go wrong by me seeing an epilepsy specialist but allowed myself to be convinced that if they weren’t the people to see they would make me another appointment to see the right people. I’m lucky that the Drs I do have in place long term are all very supportive, but I certainly won’t be allowing an epilepsy specialist to see me in the future. Xx
Thank you Lisa, I really appreciate your support. I was so frustrated with myself, I knew there was a lot that could potentially go wrong by me seeing an epilepsy specialist but allowed myself to be convinced that if they weren’t the people to see they would make me another appointment to see the right people. I’m lucky that the Drs I do have in place long term are all very supportive, but I certainly won’t be allowing an epilepsy specialist to see me in the future. Xx
I’m so sorry you had this experience Tania. Im glad you have a supportive GP. I hope any future appointments go well. Don’t let what these two said hang around you, do a T-Swift & Shake it off. Trust your own specialists who know you best.
Thank you Donna! Haha I love the T-Swift analogy! I’m doing ok now, it’s helped that my GP has been fab & that I’ve an appointment with my Gyne in a couple of months. I can see him pulling his colleague ( the one I was supposed to see) down to chat to me then & there! One thing’s for sure, I will never allow myself to be seen be an epilepsy specialist again. Thank you for all your support! Xx
Thank you Donna! Haha I love the T-Swift analogy! I’m doing ok now, it’s helped that my GP has been fab & that I’ve an appointment with my Gyne in a couple of months. I can see him pulling his colleague ( the one I was supposed to see) down to chat to me then & there! One thing’s for sure, I will never allow myself to be seen be an epilepsy specialist again. Thank you for all your support! Xx
This experience sounds horrible, some doctors do try to just brush things off or don’t really listen to you, which can be so annoying! Hopefully, you’re seen by someone in the right field next time and they’re more helpful :)
Velvet Blush
It really was like re-living a nightmare. I can’t believe she tried to disregard & undermine my diagnosis, especially as they have been made by the top specialists in the country, if not the world! I’m very lucky that the Drs I have in place long term are very good & supportive. Xx
It really was like re-living a nightmare. I can’t believe she tried to disregard & undermine my diagnosis, especially as they have been made by the top specialists in the country, if not the world! I’m very lucky that the Drs I have in place long term are very good & supportive. Xx
That’s so awful! I hope things improve for you soon xx
Kimberley // thecolourchronicles.com
Thanks Kimberley! I made a formal complaint when the clinic letter came through as there were so many basic errors with it. Even diagnosis & medication were wrong! I had a call from the head consultant of the clinic within two hours of me making the complaint & he was horrified & very apologetic. I received a retraction letter correcting the inaccuracies within a few days. I feel more confident in them now, as long as the consultant I saw stays out of my way! Xx
Thanks Kimberley! I made a formal complaint when the clinic letter came through as there were so many basic errors with it. Even diagnosis & medication were wrong! I had a call from the head consultant of the clinic within two hours of me making the complaint & he was horrified & very apologetic. I received a retraction letter correcting the inaccuracies within a few days. I feel more confident in them now, as long as the consultant I saw stays out of my way! Xx
What a bloody nightmare!!! But I was glad to get to the end to see it shouldn’t hold you back. Feeling like you’re going round in circles is just hideous. Sending lots of good vibes
M X
It really was. I was going to leave it, but the clinic letter I received was so inaccurate about basic things like diagnosis, medication & family history that it would have been damaging to have left it. I made a complaint & within two hours the consultant in charge (who I was supposed to see) was in touch & made right a lot of the problems. I feel a lot more comfortable continuing my care there, as long as the woman I saw initially stays away from me! Thank you for all the good vibes, I’m very lucky to have some amazing medical professionals around me, who I know will get involved to make sure I get the care I need. Xx
It really was. I was going to leave it, but the clinic letter I received was so inaccurate about basic things like diagnosis, medication & family history that it would have been damaging to have left it. I made a complaint & within two hours the consultant in charge (who I was supposed to see) was in touch & made right a lot of the problems. I feel a lot more comfortable continuing my care there, as long as the woman I saw initially stays away from me! Thank you for all the good vibes, I’m very lucky to have some amazing medical professionals around me, who I know will get involved to make sure I get the care I need. Xx