Hi all, since I had Gamma Knife in Feb this year, I have been suffering severe headaches. The doctors keep telling me I have Migraine, which I never seem to suffer before. On Friday morning when I was getting up, as I tried to get out of bed, I felt very unwell, very confused, very severe headache, heart rate and blood pressure were sky high and I noticed blood in my mouth, bite marks on my tongue and red bruising on the cheek bone under each eye. After a call to 111 and an ambulance to hospital, they confirmed that I had had a siezure. I had a CT scan which came back ok, but was admitted for further tests. That was until they made a phone call to a neurolgist that I have had so many problems with, who without even seeing me said i’ve had an attack thats affected my migraine if it’s settle down I can go home and cancelled the tests. Why doesn’t anyone seem to know anything about what an AVM is or what we actually go through and where do I go now, as I still feel ill…???
Not being a doctor of course, I think you need a new one! Is there any options in your area? The frustration alone with your current neurologist would cause me to look for alternatives. There is a chance they are correct, which at this point you disagree with for good reason, but it sure would be nice to know. It sounds to me as if you have encountered one fo the docs out there that I like to say are “Marvellously unencumbered by humility”. I hope you’re able to make some headway. Take care John.
I have a “thing” about long names, so I’m going to call you “MB” I hope that’s okay…
I have been battling this AVM thing for 42 years. Between the actual AVM and the side effects, I have been having that conversation with doctors for approximately 42 years (well, my parents did first, I wasn’t old enough). Over the last 42 years, we have asked for second opinions several times and in all situations, it has been a good thing. Sometimes it was necessary to get a second opinion because the first doctor didn’t seem to really grasp what was going on. In one of the situations, the local neuro doc planned a series of 6 embolizations (35 years ago) and after the first one, we had problems with the second and third embolizations so my parents and I talked to the doc and he agreed and we ended up at the University of California at SanDiego because Dr. Kerber was highly recommended as one of the top AVM guys in the world at that time. So, we went to San Diego in February. That part was nice, but I don’t remember it.
In the last three years, I have gotten second opinions from 5 different doctors about different components of my mess. Each of them said that they welcomed a second opinion because it helps them do things right. A nurse practitioner that I know said that if a doctor hesitates or is negative about getting a second opinion, that’s all the more reason to not trust him and it makes it more important to get a second opinion. So, yes, I would get a second opinion and if the first doctor wants to know why, tell him that it helps your anxiety levels if you have two docs that say the same thing.
I hope that makes sense (I sometimes have a problem with that), if it raises more questions, let me know.
TJ, I’m sitting here with my Nurse Practitioner wife and read your comment about NPs, she just smiled and nodded! Great post and I agree whole heartedly. John.
The Most worrying thing was, despite all my symptoms and what all the other doctors had told him. This totally incompetent neurologist, said it was a migraine attack, not a siezure. This is what is scaring me, my life is in the hands of people like this…
IMHO ALWAYS, ALWAYS GET A 2ND OPINION. ALWAYS
I have been on this neuro roundabout for over 20yrs (So not as long as TJ), but in hindsight had probably had symptoms for 20yrs before a confirmed diagnosis was made. The initial signs were written off as primarily ‘growing pains’ and hypochondria because ‘…well, that just can’t be happening…’ Back then the dr’s word was gospel. If he said there was nothing wrong then, there’s nothing wrong. So, it was ignored. There were odd sensations and weird occurrences, but nothing identified.
So, fast forward 20yrs I’m driving down the road with a van full of teens (I was a youthworker) and the lights went out. I couldn’t see. Saw a dr had a CT scan and the dr comes out with the line ‘Ohh look what we found…’ like it was all something new. He sent me to 2 neurologists, both of whom wanted a ‘wait and watch’ approach. In my view it was like ‘I have a timebomb in my head and you want me to WAIT???’
Now, after all of the fun and games I’d already had with the medicos over the years I was not going to simply accept their opinion and I got a 2nd, a 3rd, a 4th… opinion. Everyone of them was different in some way. But the long and short of it all was ‘we wait and then operate or we don’t wait and we operate’, either way it meant neurosurgery.
Then they operated and OMG, I’d had headaches before, like a niggle in the temple, but these weren’t just headaches, these were bolts of agony sent from the gates of hell. I’d never felt pain like it. All of the dr’s went ‘Its not us, nothing we’ve done… …It must just be YOU’. I was trialled on all sorts of meds, all sorts of therapies. Nothing was my ‘Key’. I was told I had migraines, cluster headaches, neuropathic pain, complex regional pain syndrome, trigeminal neuralgia, cervical dystonia etc and if I took every one of their diagnosis as true…
…No wonder I’m in agony.
After 20+years I have learnt I have to manage all of this for me, not them. They do not have your symptoms, they do not have your pain. I had one dr tell me ‘You just have a low tolerance to pain’ but what I have is a low tolerance to know-it-all medicos. Don’t get me wrong here, I do go to their appointments, I listen to what they have to say, but at the end of the day I have to manage all of this for me, not them. I’m 7yrs on from my last neurosurgery (the 6th surgery) and I’m still symptomatic today.
Merl from the Moderator Support Team
I have been in touch with my doctor today, asking in no uncertain terms for this to be looked into further…
There IS a connection between migraines and epilepsy, but the nature of the relationship isn’t clear. Regardless, I’ll tell you that once my daughter was put on medication for epilepsy, her migraines pretty much disappeared. I can’t agree with the others more. Please get a second opinion. At a bare minimum, you should be worked up for seizures. What you described can’t possibly be mistaken for a migraine. How would a migraine cause the injuries that you speak of here?
I see that you’re in the UK, so I do recognize that your access to this may be different than in the US, but ultimately, you should be able to get this done. It’s just a question of the wait, and possible travel time.
Sharon from ModSupport
You came into my mind today, so I thought I’d write. I hope you’re doing ok, though I know you were going through the mill, so I’m not sure about being optimistic!!
Hope you’re doing ok and enjoying the decent weather!