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 iāve had an attack thats affected my migraine if itās settle down I can go home and cancelled the tests. Why doesnāt 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 illā¦???
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 āMarvellously unencumbered by humilityā. I hope youāre able to make some headway. Take care John.
Hi,
I have a āthingā about long names, so Iām going to call you āMBā I hope thatās okayā¦
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 wasnāt 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 didnāt 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 donāt 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, thatās 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.
Hang there,
TJ
TJ, Iām 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 thisā¦
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 āgrowing painsā and hypochondria because āā¦well, that just canāt be happeningā¦ā Back then the drās word was gospel. If he said there was nothing wrong then, thereās nothing wrong. So, it was ignored. There were odd sensations and weird occurrences, but nothing identified.
So, fast forward 20yrs Iām driving down the road with a van full of teens (I was a youthworker) and the lights went out. I couldnāt see. Saw a dr had a CT scan and the dr comes out with the line āOhh look what we foundā¦ā like it was all something new. He sent me to 2 neurologists, both of whom wanted a āwait and watchā approach. In my view it was like āI have a timebomb in my head and you want me to WAIT???ā
Now, after all of the fun and games Iād 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 4thā¦ opinion. Everyone of them was different in some way. But the long and short of it all was āwe wait and then operate or we donāt wait and we operateā, either way it meant neurosurgery.
Then they operated and OMG, Iād had headaches before, like a niggle in the temple, but these werenāt just headaches, these were bolts of agony sent from the gates of hell. Iād never felt pain like it. All of the drās went āIts not us, nothing weāve doneā¦ ā¦It must just be YOUā. I was trialled on all sorts of meds, all sorts of therapies. Nothing was my āKeyā. 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 trueā¦
ā¦No wonder Iām 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 āYou just have a low tolerance to painā but what I have is a low tolerance to know-it-all medicos. Donāt 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. Iām 7yrs on from my last neurosurgery (the 6th surgery) and Iām 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 furtherā¦
There IS a connection between migraines and epilepsy, but the nature of the relationship isnāt clear. Regardless, Iāll tell you that once my daughter was put on medication for epilepsy, her migraines pretty much disappeared. I canāt agree with the others more. Please get a second opinion. At a bare minimum, you should be worked up for seizures. What you described canāt possibly be mistaken for a migraine. How would a migraine cause the injuries that you speak of here?
I see that youāre 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. Itās just a question of the wait, and possible travel time.
Sharon from ModSupport
You came into my mind today, so I thought Iād write. I hope youāre doing ok, though I know you were going through the mill, so Iām not sure about being optimistic!!
Hope youāre doing ok and enjoying the decent weather!
Best wishes,
Richard