I’m glad you went in and got it checked out. Keep us posted on your Neuro visit and the next steps.
I still have weird feelings in my hand/legs, balance issues, etc. but getting the AVM removed was needed. Each year I have a follow up MRI and so far all is stable (just had my yearly last week).
All the best,
Pam
Dear Jaylah,
Firstly not being a medical professional and hearing on your symptoms, I would COMPLETELY agree with Richard to visit the ER. Your symptoms haven’t improved and have persisted for a few days now. We cannot risk-take when it comes to health!
I also remember a few months back in March, my ‘migraines’ had become SO much worse, I would be having pain more often than usual however I did tell myself maybe it’s nothing so serious, just the AVM causing some pain. However my mother repeatedly told me I should go to the hospital, and it did turn out that some of the abnormal vessels were ‘stretching’, and infact it looked like a ‘bleed’ on the MRI. With an added angiogram they said it would be safe to observe me for a few days… and honestly I needed that.
Long story short- worsening in symptoms=something may be up! or you may need new medication to deal with the NEW symptoms.
You also stated that you talked to you family doctor and updated them with this, how did they respond? What are their long-term plans?
I really hope all is well though! Fingers crossed girl!
Roshan 
Thanks for sharing about what you have been through. I appreciate this very very much
What happened after they observed you?
Why was the Avm stretching? 
Must have been painful 
How did you get through that?
I’m wondering how to get this pain I’m feeling under control.
I was released From hospital and my eyelid is still dropping, still having some pain on left side. sharp pains going down each leg during the latter of the day. These pains are weird too. Enuf to make me jump. I wonder if these docs aren’t taking me seriously because I have fibromyalgia. It’s like the last thing I tell them about myself when they ask about meds.
My family doctor didn’t say much. I don’t think she knows what to do, I feel I am educating her. We talked about pain management since pain is lvl 8.5 from the hop stepping out of bed. I have severe fibromyalgia (nerve pain/muscle spasms/migraines etc) so I’m already loaded up with a cocktail of daily meds taken at intervals to manage breakthrough pain as well as the ongoing pain . Which in the past 3 weeks has not been working.
I would really like to hear about what others do for pain management head and neck/jaw?
Seeing neuro tues. hope this doctor will have a plan my appointment will be a zoom appointment. I have to say I’m disappointed. But at least I’m not sitting at the hospital for 8 hours crawling the walls r now lol 
Today is a very bad day regarding mobility and head/ neck pain. I cant lift my head with my pain this bad so I am bed bound.
I really appreciate hearing from you. I hope you have a good day Roshan 
Thank you for chiming in and for listening to me ramble. Someday …there will be peace
~ gentle hugs to you Roshan
Wow! You do have plenty going on, don’t you?!
Pain from a brain AVM can definitely be significant and (from what I read here) send mostly to be migraine-like but there are definitely others with more persistent pain – I need to let them share with you. I’d like to know a bit more about your apparent palsy and what they did in hospital. Did you stay in for a day or two or were you only seen as an outpatient?
We do have an allied site re fibromyalgia, with Davey as moderator there. If you want to sign up there, I know you’ll have some things in common with those guys, though fibro is a weird and wonderful condition that seems to me quite wide ranging as to how it affects people (a bit in the same way that a brain AVM is very specific as to how it affects us).
Good luck with the neuro next week. I’m hoping for a bit of action for you 
Richard
@Jaylah So sorry you are having pain - I have something called ehlers Danlos which many people are often misdiagnosed with fibro. I was referred to the Stanford Pain Clinic and get Botox shots every 3 months and Ketamine infusions and oral ketamine. I have tried every shot in my head and traps and this is what works best for me. I do also recommend occipital nerve blocks but now I am allergic to lidocaine and ripovacaine - I would definately ask them to refer you to pain neuro who specializes in headache. My Ehlers Danlos did not really bother me until after I had a stroke CVST which later caused my AVM
Thank you for the information about your condition and taking the time to reply. How are you feeling today?
Is the ketamine working? Hope so 
I’m on a patch and many meds. Hard to find pain control. I also have botox injections for almost a year now. Also have has nerve block injections for like 6 years. Put me into flares all the time. Botox used to work. Helped with eye shivering (occipital migraines) vestibular migraines. But the last two haven’t touched this pain etc.
I have an appointment today with stroke/neurosurgeon over FaceTime 
I love do my best to find out what is going on and how to either live like this or wtheck.
I had a CT done at the hospital with contrast when I went to emerg. My mom says this is the angiogram / type of investigation that I was waiting to have.
Is a CT w contrast considered an angiogram?
I have looked up your illness and can definitely relate to some symptoms. I do have some lax ligaments but that is from 9 yrs gymnastics, back ends and over splits … but I won’t disregard. I am open to everything at this point as I feel this is quite confusing. Especially since the pain that I have before AVM started as a result from medications. More things to talk about. No wonder jaw is sore
Take care and thank you for caring.
Hope all the best for you. - bless you
Julia
Hi. Well thanks Richard. Your so kind.
Bless you 
How are you feeling today?
@Jaylah Hi Julia There are I think 13 different types of Ehlers Danlos or Eds - the most common one seems to be the one that they have not found the gene for yet and a few years the expert drs changed the criteria for being diagnosed - And that seems to have to had the reverse effect at least out here West coast to get diagnosed. I was actually speaking to my ketamine nurse and she said she honestly she doesnt know much about EDs ( which most drs and nurses dont and are taught its rare, but when you talk to the experts they actually think its 1 in 2500 or less-) She said that they have to be careful because so many people come in thinking they have it…- I am like cause they probably do…anyway- my mom, sister and I were all diagnosed by a Genetic dr from UCSF who is well respected and we have so many weird things no one questions us. We also try to see the same drs so they understand EDs and us more. There are sadly so many other things that go along with EDs since collagen is used for veins arteries bones eyes skin etc…And each person even in the same family can be different. I think for me growing up in SF - walking up the steep hills and being a tom boy and playing sports my entire life helped me not feel the body pain until the stroke. But I still had other symptoms
You talk about flares and medications causing issues and this is very typical in us EDs. And many have mast cell activation issues due to EDs as well. I too am allergic to so many meds and was so happy when ketamine worked. We first did a 5 day in patient 24/7 at Stanford and that gave me 3 months of pain relief. Stanford sadly doesnt have enough nurses to do ketamine like it is supposed to be on a monthly outpatient to keep your pain down. So I am avg about every 3 months and the last time we did it 3 days out patient for 4 hours- Stanford is also very conservative in their dosage- The max infusion they will do is 43mg - I have no idea why- The oral pills are compounded and the cheapest compounding pharmacy is Belmar Pharmacy in Colorado. Here are some good resources for EDs https://www.ehlers-danlos.com/what-is-eds/
This group has some great videos not just on EDs but on the other things that go along with EDs like Mast Cell issues - here is one https://www.chronicpainpartners.com/webinar/webinar-update-on-tryptase-research/
The angiogram with contrast you would have a cut on one side of your groin and you are sore and have to lay flat for 12-24 hrs afterwards. I think you just had a reg CT with contrast.
I still have pain every day cause my original stroke fried my thalamus which causes Centralized Pain Syndrome. But my drs never told me that I had CPS until a few years ago. I have head pain like if you were wearing a headband and in my left arm and left leg like a bad hamstring pull. It was in 2011 when I had my CVST stroke but any type of stroke can cause pain. I find most neuros unless they are a pain neuro or pain physio really are not used to the brain sending pain messages. Its like during the stroke our hard drives got damaged . I also have something called Thoratic Outlet Syndrome another Eds thing where I have compression on the nerves kinda in the front of the neck down towards the pec muscle and we do botox in the scalenes to help.My pain drs dont want me having the surgery and what I have read people still have pain after surgery. After a block shot for my TOS I had a bad reaction and had a bad flare for about 3 months - I may try stem cells into that area there is an expert in Southern California . I also do marijuana gummies and topicals and even my marijuana dr is a neuro who just by chance I got and she specializes in the basal ganglia which mine also got damaged during my stroke.
One thing I can suggest is to get your medical records there was so much more information in the reports that the drs said they had gone over with my husband and family which infact they had not - So we did not even know where my blood were in my brain or the exact damage. After only being on the marijuana gummies for pain and sleep a year then my thalamus which I was told was dead was suddenly back. My dentist who has been my dentist since I was 5 said I bet its the marijuana and it was the only new thing I did . My Stroke dr who is the head of Stroke at Stanford said oh now your brain shows no signs of the strokes you had and I said Really? Why do I still feel like S***? He said he didnt know but of course he really knows but for some reason I guess wanted the other drs in the Pain Clinic to break the bad news to me. I do have a great team of drs and nurses at Stanford and even found a derm and allergy dr who seem to get EDs outside of Stanford. It can take awhile to build a good team. Even if you dont have EDs you may want to join your local Facebook EDs group as they seem to see the best drs who think outside the box. Also people with EDs absorb medications faster esp numbing meds - so for a normal person say a derm was going to cut something off like a mole they would shoot in some lidocaine and wait a few minutes with us they have to shoot and wait a few seconds and start to cut. Also we normally have to have epinephrine with our lidocaine for dental. Please let us know how it goes with the new stroke neuro-
Hugs Angela
Hi,
The update from today’s appointment. Not much. A little movement I guess. I met online with a med student …fml. Jeeze
Anyways. A med student. They must think there isn’t any worry I guess. Idk
She was from the stroke team at the neuro department at VGH here in Vancouver. She is ordering an EEG as well as putting in another referral to the neurosurgeon Dr. With whom I am waiting to see originally. (Dr. Redikof)
Anyways. She says it isn’t deep. It is on the frontal lobe and it is a couple centimetres big.
Also that the visit to emerg symptoms don’t seem to fit a stroke or tia blah blah. Idk. I’m just following the bouncing ball here.
I thought I was actually going to talk to a doctor. Then she says oh, I can show your MRI to one of our Neuro’s here.
Julia,
Hi. I’m doing just fine, thank you. Nothing to touch what you’re doing!! My AVM was a DAVF at the back of my head, with reflux playing all over the place. As part of my embolisation, I had something blocked on the inside of my skull and a bunch of the veins on the outside of my skull. Just occasionally the outside ones get a bit sore and for some reason they were sore last night but otherwise I’d say I’m spot on and have been for a couple of years now.
I’d say a CT with contrast should show as much detail as an angiogram. My angiogram was contrast seen on x-ray, so still “with contrast” but using an x-ray means to view. As far as I know, you get good enough detail on either to see what’s going on and it may be the doctors preference as to which they prefer to use. Or, it may be what else they want to see on the scan that determines the method they choose. I don’t know.
Keep chasing the neuro team. Definitely get the scans looked at by the actual neuro! We’ve all been through similar treacle.
Very best wishes,
Richard
Hi Angela 
I don’t know where to start with this reply 
I can’t tell you how much I appreciate that you have taken the time to tell me about all you have been through and what you contend with today. You are helping me so much! So so very much. Bless you.
I hope to have a few people in my corner to help something. At very least some pain management. Being 46 and retired isn’t the best frame of mind. It had been hard to surrender and accept. At times.
I have always felt close in heart towards an altruistic Belief system, since becoming a person who suffers chronic pain/fatigue 7 years ago, this has been very hard.
Anyways. I guess working and helping others is no longer in the cards for me.
Take care Angela and thank you for caring
Hi Julia @Jaylah
So sorry your appointment was with a student It’s so frustrating! Stanford is a teaching hospital and at first I would get the student drs coming in first. But when you are in constant pain you just loose your patience and get sick of repeating the story…Now my Neuros know better cause I have no problem telling them I have been through way to much crap to let someone practice on me when all my stuff is rare. I will occasionally let them do something but if it’s for pain relief no way.
When you do get to speak to real dr- Whether it’s a stroke neuro or your primary - ask- demand - to be referred to pain neurologist- mine specializes in head but that is not all she does she is also treating my Thoracic outlet syndrome. Another dr in her office is a physio and he is the ketamine expert and such a great pain dr.
He also prescribed me voltaren gel which came in handy when I had the bad flare from the allergic reaction to the nerve block for tos, I have noticed that they are now selling this over the counter here in the states. You just have to wash your hands well if you have pets. The more you rub it in the better it’s supposed to work. Now both my sister and mom are using it.
I too had to retire early at 46 I did try to go back to work 13 months after my first stroke but the pain and sleep issues were too much.
Right now concentrate on building your team of drs, nurses etc
Then later you can always volunteer. When I was on the board of a no kill cat shelter I thought the best thing people could give is their time and skill sets . I am now a volunteer commissioner on my aging commission.
And I helped form a new nonprofit for cats but we are still looking for space for a shelter.
I also make toys for pets that I sell on Etsy that either 50% or 100% go to different charities.
So please don’t give up on helping others . You will be able to help others , right now you need the help.
The way my avm neuro described to me when I asked how he decides what to use in embolism he said it was like an art form and his years of experience that he knows what will work . He is the founder and head of neuro radiology at Stanford. So I personally don’t want a young avm dr.
Here is a video on ketamine by USA dr.
Here is a book from Amazon
When I do my outpatient ketamine infusions I drink water that I out in my own electrolytes. You do get IV fluids but I feel this works better for me the combo,
This invisible health issue is scary and life altering for many of us. You are not alone and we are all here for you.
Sometimes I found when my husband or sister came to my appointments and they would bring stuff up then the drs would take it more seriously which is sad but seems to be true for many.
My husband and I will even discuss ahead what he will bring up etc.
Hugs
Angela
I hate to hear it when someone is in pain but thats something a lot of us suffer from daily… right? 
its awful, so so awful. I have been going through a lot in the past few weeks since I am tapering on a medicine I have been taking for 2+ years plus (pregablin) and I honestly think this experience of tapering is very underrated because it is surely so painful and so frightening! You don’t know what to expect rather than a LOT of pain.
Well a little of a ramble but about this ‘stretching’ of vessel, I am honestly confused at that but the doctor said that since I am still through a process of the gamma knife treatment and the AVM is slowly ‘shrinking’ the stretching is a normal expected observation. It does make sense but the thing that is annoying is that they can’t do much clinically rather than prescribe you some meds so they’ve given me Amytriptyline. I wonder whether anyone has tried this med for severe chronic headache/migraine/nerve pain? It was painful and its a thing that will go up and down most likely throughout this GK procedure, so it’s a matter of time and patience (a LOT of it alongside the reliance on heavy painkillers).
Enough from me, but I relate completelyyyy when you say you felt like you were educating your family doctor… honestly thats the thing with rare conditions! 
I hope the doctor has given you some good medication to help with this pain. and if so what are you taking if I can ask. How are your migraines like? Frequency and intensity wise?
I also suffer from face/neck/jaw pain and it’s awful because you can’t do much rather than massage the points or apply some muscle pain cream (I use voltarol) for some short-term relief. With neck pain, I do know some yoga postures can help ease the pain (a little) so maybe have a try with that if you haven’t already! Also I know this may not apply but smelling some lavender oils (personally) have helped just ‘relax’ me while being in this pain that you can’t run away from.
All-in-all I hope your zoom consultation went well and if they’re new updates please let me know! I just hope, so so hope that they can get to the bottom of this pain, of our pain… and you’re right Jaylah… one day, oh someday peace will be ours…
Lots of love and virtual hugs!!
Hey Roshan
Yes, it’s one of the many meds I’ve been trialled on. Post surgery, my pain was ‘off the scale’. Medically I was told “After 8weeks the body has fully healed…” and for muscular/skeletal injuries this may well be true. But when it comes to neuro 8weeks is still early days in recovery and because my symptoms fluctuate MASSIVELY, trying to pinpoint cause/effect is near on impossible. Opiate painkillers have been given a fairly bad rap recently due to concerns regarding addiction and because of this some tricyclic antidepressants are often trialled at a lower dose than psych treatment dosages. For some people there has been a benefit, but, like many medications, it certainly is not a ‘one size fits all’ sort of treatment. I have found it really can be a case of mix’n’match for what works best for me on THAT specific day with THAT specific pain.
‘Brain pain’ is very unique as the brain itself has no nerve receptors, the brain processes pain messages from elsewhere in the body but cannot feel pain. But the structures around the brain can feel pain and an alteration in blood flow can trigger pain. Often trying to get a dr to accept that our pain is real and is huge can be very difficult, as it was said to me ‘Ohh it can’t be THAT bad…’ and they are correct, it’s not THAT bad… …it’s worse than THAT bad. We can only gauge pain from our own experience and if their worst experience of head pain is a ‘niggle in the temple’ then that’s as far as their pain scale goes. Trying to explain this level of pain is impossible. As a friend of mine once told me ‘The worst pain in the world is a toothache…’ as that’s the worst pain he had ever known and I told him ‘Give me a toothache any day over this’.
When it comes to medications it really can be a case of ‘trial and error’ to find what works best for you as an individual. For some, these medications can be the ‘miracle cure’ they’ve been hunting for, but then for others they can have very little effect/benefit. It is not a one size fits all sort of scenario.
Merl from the Moderator Support Team
Hello. I have the dark shadows that look like people. It’s especially freaky at dusk! X
Merl,
Thank you for your message and I hope you’re doing well! I agree with a LOT of what you said here. A pains scale varies from person to person but in that sense I have always found it unfair that someone’s 10/10 may only be our 5/10. I have always found myself almost ‘judging’ other people’s pain which is horrible I know! I have envied it when someone sits at home, cancels plans and gets all attention from something that is a ‘minor’ pain for me, like stomach pain or a flu and then this often leads me on to say ‘I wish I had that type of pain rather than this’. Where I stand right now and I am sure other people here will agree but we would swap this pain with another type of pain only because this pain we got through is so so underrated and misunderstood. However pain is pain and no one deserves it no matter what type of pain it is and it is definitely wrong to have the mindset I am describing right nowonly because everyone has different experiences!
But then again I ask the question ‘why?’, why this bad? and then why everyday? It’s hard so SO hard that I often find I cannot describe it to others let alone myself, so I am better off not even trying to describe it to someone who hasnt expereinced this.
But on the other hand you have mentioned you used Amitriptyline, I would love to know how the experience was for you and whther it worked? What were the side-effects you noticed if there were any? What opiate painkillers have you used?
Brain pain sufferers are undoubtedly strong…hehe. How are we even doing this? 
lots of best wishes 
Hi Roshan,
Sounds rough and I hope I can help. Im sorry to hear you are having the pain of coming off of Lyrica as well as healing pains 
That drug is good one for nerve pain.
Last time I tried coming off, I was very emotional and could hardly walk From the nerves firing off constantly .
I will be hoping the best for you, please take it slow. Slower than slow if you can. Please look at topicals if you haven’t already. It’s not cheap, but Hawaiian noni cream is cold if you have nerve pain and don’t mind cold.
it is good for deep pain. Cryoderm roll on lotion. Cannibis salve. List goes on. Ice Packs.
Stuff I use anyways.
I wish you were on something else that would cover your pain enough so that it would ease the difficulty of tapering. As most of the docs I have met, only hand the drugs out and do not know what we endure at home tapering. Mentally, emotionally, physically, socially etc.
Amytriptaline …I just felt sleepy and this med Helps increase hunger and I gained weight.
So I have was take the sister drug called Noritryptaline. I like this one for myself for mood booster, pain and energy. Also, I can play with the amount and it is easy to come off of if I so choose. But that’s me. Everyone is different.
Im also on a baby patch called butrans (buprenorphine) delivers small amount of med during the day. Since I have Such large pain and it Will breakthrough during the day. the other meds come into play.
I always look at the coming off part too.
Other Meds that help me.
*Flexiril
My neuro just gave me a migraine med
*raz-Triptan. (Migraine med)
It is working very well. Only been using for a week though.
All other meds I have had experience for 6 years.
Have you tried
*Nabilone? (cesemat) nerve pain?
Nabilone is a very good med for nerve pain. It is my go to when I was trying to come off of Lyrica. That and *tramadol.
That is my experience. Hope that you are able to go slow and can find some energy to take an Epson salt bath. They really help the aches.
They are a lot of work when in pain, but at the start of a day, it can help the nerves big time.
If I can answer any questions? I been thru lots of meds and pain so idk
Take care and bless you
I didn’t read your post properly. Sorry. I realize I missed a few things duhhh. Thanks for asking about my appointment. I got so focussed on meds. Lol 
Migraines are every couple days. Then when they come everyday. They stay for like 5-7 days in a row. And then fibro flares and dystonia happens. I just came out of a two week stint of muscular (neck) dystonia. Which makes me depressed and crippled. Emotionally and physically. It’s rough. Now I’m enjoying a bit of a break.
I found that the new neuro. Dr. Toth. He listens. And gave me a good drug that is working. He will be doing Botox injections.
I dumped the other pAin doc as she was very rude to me last time we spoke. I couldn’t remember something when we were talking on the phone and she got very frustrated w me. She doesn’t have a good bedside manner to begin with. She is rude and I think I’m a liability anyways. Discovering this Avm 1 year after migraines and not getting my pain under control. Also I was asking about getting on the list for ketamine infusion and she refused me and kept refusing me. It was very weird. So I’m done with her. It’s mutual. Im experiencing the wrath of evil out there.
It left me with a bad taste. Anyways. This new neuro has already referred me to a neurosurgeon. So at least im in waiting.
I get migraines. But now I know that I need to take a proper med. (now I have a proper med thanks to dr. Toth) right away !)
A good doctor is worth it’s weight in gold.
Also feel blessed because I have a good family doc. She is the one who I see for my pain meds. Weird hay?
Btw. Can I ask. How much are you tapering off of? Hope it’s not too much to go.
How are you feeling today?