I’m currently dealing with a lot of other things as well, but headaches and substantial ringing in the ears (think 10 ft from the speakers at a Rolling Stones concert) and pulsatile tinnitus. I can actually have two different headaches at one time - on the right half of my brain, it’s a throbbing that goes from 4 to 7 to 4 to 7 (repeat) in time with my pulse. The left side just has a full blown the whole front left half of my head hurts. It’s special. (Sarcasm alert).
My neurologist has me on Amitryptiline (Elavil) and Topomax. He started the Amitryptiline at 10 mg and we increased the dosage by 10 mg ever week until we got to 50. Then we jumped to 75 mg. The only change that I saw was that when the headaches spiked most of them didn’t spike as high. I used to get say 2 episodes a day where they would spike up to 8 - usually for less than a half hour and start coming down. Now I probably get 2 a week. I still get as many spikes, just not quite as high.
Last week, after reporting the virtually non-existent improvements, the doc wanted to add Topomax and see me after I’ve been on it a week. That’s tomorrow.
I’m on some pretty strong meds already - and they really haven’t done a thing. So, my questions I’d love input on:
If any of you have found success in dealing with AVM headaches, what med was it that helped - message me if you’d prefer.
What questions should I ask the neuro doc tomorrow? As we are just over 6 months post op and getting closer to getting Social Security Disability approved (I’m on a first name basis with the lady handling my file), I’m trying to figure out more what I’m going to have to live with and how - so I can get “unstuck.”
The only meds that I’ve found to help have contained opiates. I have tried everything from blood pressure meds to epilepsy meds to psych meds and everything in between, even botox. I’ve had major dental surgery, removed all of my top teeth because “Well, it could be a associated with a toothache” I’ve had eye tests and now wear prescription specs for reading and driving. I’ve tried manipulative physio, chriropractic therapy, acupuncture, bowen therapy and hydro therapy. Somethings have helped a bit but nothing has been the key. To be honest one of these treatments could be your ‘key’, so keep an open mind to all options.
But
“…unstuck?” Hmmmm. Not being rude, but good luck with that.
I’ve (unfortunately) had to learn to manage. My headpain rating system has evaporated. What used to be a rare 7-8 has become a normal (daily) 4. What now rates as a 7-8 was off my scale before. I’ve had to be ‘retrained’ in pain management. Since my last surgery my triggers and tolerances have all changed. Previously I could semi ignore a headache, not anymore. I could medicate, then continue in the task, not anymore. I’ve had to re-learn my ‘new’ management processes. Can I feel it building? Is the headache increasing? Will medication help? Do I need quiet/silence? Do I need a dark room? Have I done anything to exacerbate it? Do I need rest? etc etc etc
These are all questions I need to ask myself with every headache and it drives me nuts. I can never tell when, how nor why? And I’m (as you put it) stuck.
If you find the key that works for you then… …… congratulations. Please come and tell us what worked for you And I mean that in all seriousness because some of us don’t find or haven’t yet found that key.
I am grateful that since my embolisation, the migraines have stopped. I only have a migraine if I overdo it with the visual stimulation (e.g. working on the computer for hours). However, when I did have migraines before - only 60mg Codeine worked for me. It also makes me drowsy and makes me go to sleep which helps too.
My neurologist mentioned putting me on Flunarizine if my visual episodes were not due to seizure activity and instead were migraine related. Flunarizine is an alternative to propranolol or topiramate. So if the other options don’t work, maybe Flunarizine will (I tried Amitryptiline, Topomax and Propranolol and none of them worked with my migraines). I would have given it a go if I had been made aware of it before my embo. Almost daily migraines weren’t fun, I really do hope you can find something that works!
Merl, Thanks. I know that realistically I’m not going to get “unstuck” back to the old me. But if Social Security would get in gear and get that approved, then I would feel like I could focus on some other volunteer or small paying part time things that would make me feel useful while still walking this road. I have talked at length with my counselor about how to live with the pain because that is, unfortunately what I think my reality is going to be as well.
I pledge to be 100% an open book to the good, the bad and the ugly on this journey - if I can help one person, then that would be a blessing to me.
Corrine, Thanks, I appreciate the input. I’ll make a note of those drugs too. If you could the 7 embolizations they did in 1986, I’ve had 10 and this is the only time I’ve had headaches beyond the first few days.
Update after appt with my neuro doc today (not the neuro surgeon that did the embo, but a neurologist) and was highly unimpressed:
“Oh, you’ve only been on Topomax for a week, it’s going to take a lot longer to build up to a dose that makes a difference.”
“Unfortunately, there’s nothing I can do for the ringing in the ears.”
“The fact that you started taking Amytriptyline at about the same time as the ringing in your ears got substantially louder is completely coincidental.”
“If we get up to the highest dose of Topomax and no improvement, then I’ll refer you to one of our headache specialists.”
Yeah, I’m not feeling very happy and not very encouraged tonight…
Hey Tom,
I’m sorry to say this, but, I’m not surprised. IMO many neurologists work on theory and I can ‘guess’ on symptoms/treatments just as good as they can. ie “Well, it could be ‘x’ or it could be ‘y’…” Hell, using that theory it could be the whole damn alphabet. It’s pretty much the same with medications I have found ie “Here, try these… …ohh that didn’t help, well, try these instead…” I felt like I was being used as a pharma guinea pig. As for the ‘headache specialists’ I’ve been there too. I attended a world renowned ‘Pain clinic’ which was more of the same theory medicine. It was more of a talk fest, once you have exhausted all of their theories (and if you’re anything like me, you probably already have) then what? I have seen more dr’s, specialists, druids and wizards than I can count on my fingers(and toes). Each has their own theories and each has discredited the others theories. But social security like you to have exhausted every avenue, so if you find a dr who gives you a list, fulfil that list, then when you have a SS appointment you can show them you have followed a dr’s advice. If you don’t follow through with a suggested treatment they can hold that against you.
I have learnt that I have to manage all of this for me, not them and their theories. I have found that for me, there is no magic pill nor potion. I have a combination of therapies that I need to mix’n’match depending on needs and activity plans. One of the biggest issues I have found is that I cannot say that at ‘x’ time under ‘y’ conditions I will have headache type ‘z’. I have no set time, no set pattern and no set headache type. If I did then management would not be so much of an issue, but as it is all so variable trying to find a fixed management tool has been impossible. I have to be prepared to manage whatever comes my way. I have found that this can be very difficult for members of the medical fraternity to comprehend, they like patterns which I seldom have. If I did management would be simple.
As I’ve said to others before “It’s all sh%#, it’s just the depth that varies”
Hmm to be honest though at least when it comes to Topomax, I understand why he said you need to get up to the highest dose before it can be confirmed it doesn’t work unless you have funny symptoms that show your incompatible with it. Sumtriptan could be used for the onset of a migraine to prevent it if you haven’t already tried it. I would keep a diary record of your migraines to being to your next appointment to show whether there has or hasn’t been any progress.
You could ask to be weaned off of it and see if that makes a difference to the ringing in your ears? If it doesnt change the ringing In your ears than can always decide to go back to it after a while of waiting to see if there’s a change. I wasn’t compatible with it so decided to be weaned off myself.
before being sent to the pain specialists, might aswell look into giving propanolol and Flunarizine a go with your neurologist first? Maybe those will work better. I get giving Topomax a go first though to see if that works, maybe you could try a combo even?
As for the ears ringing maybe an hearing related specialist might be better at knowing what to do? Like an Neuro-Otology department? Then you would have neurologists and specialists trained in hearing related issues.
It is frustrating though that some of these specialists seem to be clueless about treating a patient with empathy and sensitivity - I’ve met a couple terrible ones myself! There are apparently empathy related courses on how to treat patients that they must complete to qualify - clearing for some it goes in one ear and out the other!
I hope you get some answers and aid with your current hearing and migraine issues soon
This is “kind of” related to my neurologist appt on Thursday. On Wednesday, I had a CT scan done at my ENT doc’s request. Apparently the temporal bones are genetically “thinner” than normal and he wanted to make sure nothing had happened to them.
The medical system that all of my doctors (so far) are part of (and my wife and 1 daughter also work for them) will post results on your “my health” account before your primary doctor - the one who ordered it can see them. I think that’s strange and some times it could be a bit scary.
I got the results of the CT back today. It said that the mechanics of my ears are fine but that there is
“Extensive metallic streak artifact from coil embolization material filling the left sigmoid sinus, extending into the jugular bulb and visualized upper internal jugular vein, and several coils extending into the distal left transverse sinus.”
When I go to good old Dr. Google, I find a lot of articles written in Greek (well, not really) but written about these particular veins and tinnitus and hyperaccusis and hearing loss and vestibular issues and potentially even impacting the nerve that is connected to the laryngeal nerve which controls my vocal cord that is paralyzed.
Guys, if I read that right, that could mean that the reason my symptoms are what they are is because the left sigmoid sinus, jugular bulb, upper internal jugular vein and the distal left transverse sinus were plugged up with super glue.
So what does that mean? Beats the crap out of me (sorry). I don’t know how I can use that information to either heal myself emotionally and mentally so I can “play through the pain” or can heal physically.
Any idea where your glue & coils are supposed to be? Reading about the jugular bulb (not a thing I’ve ever heard of before) is interesting. The article I found indicated a greater incidence of Menieres and tinnitus with some variations in size or position or abnormalities of the jugular bulb and seems very close to the eardrum. It also refers to the temporal bone structure issue, too.
If you’ve got a load of glue or coils or other stuff there, it would definitely seem likely to muck up your hearing (and makes me wonder about DAVF treatment which is almost always upstream of this point. Certainly fits with mine)
Very interesting. Having read one of my reports without a doctor to mitigate the meaning of some aspects, it is always frightening to try to interpret yourself.
Very best of luck! Sorry to read all of the previous posts as to the extent that you’re struggling with headaches. Again, if you’ve got that much blockage going on, would seem pretty likely to me to be having a big effect of one kind or another.
@TJ127 I have not really found any drugs to get rid of my AVM headache/ head pain
I am now also on topamax on 50 mg and it has helped reduce my migraines which did increase but has done nothing for the AVM pain or the stroke I had before the AVM formed. I do get Botox shots where these pains are every 3 months but for migraines but my drs does them also where my AVM and stroke pain is and it takes a bit of the edge off.
I don’t think they know what to do the only time I felt like my old self and pain free was an occipital nerve block
Angela
Found out some more about the “artifact” that the CT scan showed in all of those veins. Artifact in a CT scan is sort of like static on a radio. It sounds like its there but it’s not really there. So, unless the people in Ann Arbor (U of M) say differently, the artifact is essentially the shiny reflection of the 30 coils that they put in my head showing up there and it isn’t something that is an answer to why I am how I am.
So, we shut that door and move on to trying to figure out what causes me to feel the way I do and to hear as little as I do.
Tom,
I too have had a scan report mention an “artefact”. It seems that there can be 3 differing reasons for an artefact. In really basic terms an artefact is an anomaly in the scan. As you say this can be due to appliances ie coils, shunts etc, it can also be due to improper use of the imager or it can be due to patient movement whilst the scan is in process.
The word ‘artefact’ to a lay person can be rather concerning, especially when it’s within the brain. I know on initially reading the word my thoughts were artefact=old, like an Egyptologist finding an artefact at the pyramids, but another interpretation of the word is ‘an artificial feature’. I queried a radiologist about the wording and it was said to me that it is not the radiologists role to diagnose a condition, but to identify anomalies within the scan. It was also pointed out to me from the report from my very first initial scan where the radiologist recommended “Further neurosurgical investigation” rather than a direct diagnosis. It was the surgeon who gave the direct diagnosis.
Hope it helps
I had my AVM burst on Nov 10, 2014. I have had a headache every day since then. When I say every day, I mean every single day. I have tried topomax, amitriptyline, citalopram, propranolol, etc… I have tried about 30 different types of meds. I was having some success with tramadol but had to stop because it caused me to have seizures. I have just learned to deal with the pain and take hydrocodone. I still have headaches every day and my neurologist has not helped at all. She just looks at me every time I see her, and she says I have headaches because of the hydrocodone. I was having headaches for months before I started taking the hydrocodone, so I don’t agree. I think there is no way for them to understand, so I ignore them. I wish I had better things to say. Hopefully you get better and figure out what is best for you.
Sorry to hear that Zac. Do you have pain clinics? I’m guessing yes, and it sounds like you’ve probably been there and done that in the pain field over the last few years. My wife is a nurse practitioner and she sometimes sees people who have had chronic pain and tried darn near everything from their care provider. She has had a measure of success in referring them to the pain clinic specialists,who all they do is deal with patients with chronic pain. I thought I would just throw it out in case it may be an untried option. John
Hey Zac,
I have to say I do not find your situation surprising, in fact, once the medicos have exhausted their avenues of options, I would suggest that your neurologist’s opinion is rather common. I too have gotten to the point of ‘…so I ignore them…’
Now, in saying that there is such a thing known as ‘rebound headaches’ where with over use of medication the body can become dependant on the drug to feel ‘normal’. When the body does not get the drug it can cause withdrawal symptoms and triggers pain. This is a common theory within ‘addiction medicine’ and is often the fallback position when the medicos run out of answers.
We have to manage our situations for ourselves. Some medicos think that we are in this position by choice. Who the hell on earth would choose THIS???Daily mind numbing excruciating pain, yea, that sounds like fun. NOT. Nobody chooses to be here. NOBODY. But we have to manage the best way we can.
I know for myself if I keep taking high dose opiates my body normalises to their use, then when I need them for chronic pain they don’t work. My wife is often telling me to take the damn things as she can see I’m in agony, but I try to push through for as long as I can to minimise the effects of such addiction.
The awful reality of all of this is that we have to manage all of this for ourselves, not the dr’s. I have often offered my pain to the dr’s, free of charge, but I’m yet to find any takers. They may have all the theories in the world, but we don’t deal with theories we deal with reality, a reality many of them have no idea of. So I allow them to pass judgement but I take what I need when I need it and manage the best way I can, no matter what their opinions may be.
