I was just told by a second neurologist that there’s nothing else we can do. There’s no more medications to try with my migraines. There’s nothing we can do about my symptoms. What am I supposed to do…wait for a bleed to get proper treatment?
I’m feeling stuck.
Hi. I’m sorry you’re having such a tough time.
I do know the feeling of “if only I had a bleed, they’d start to do something now” but to be honest, having a bleed mucks up so much else that it is definitely better not to have one. It’s kind of tough but it’s best not to have the bleed.
Equally, I get that migraines are awful. How often are you having migraines? Have they been getting more frequent or are they just not going away like you hoped? What other issues or symptoms do you have?
I looked back at a couple of your recent posts and I know you were worried about having a bleed. I do agree with Adrian that your AVM has been there a long time, so in some regards knowing it is there is a good thing… if you have a bleed you already know why and what to do. But in other regards, it’s best to forget that it is there and just do life as normally as you can. Everyone is different, so your normal may not be the same as some others.
Lots of love,
Hi Richard, thanks for your response.
My migraines went away a few months ago, but they’ve come back. They’re not quite as bad as they were before, but this time they’re every. Single. Day. Plus I get nauseous now. I know it’s better not to have a bleed but I’m tired of not having answers and resolutions. I’m glad to know that this is making sense…
I’m so sorry you’re going through this.
The only idea I’ve got is to try to chill out about it as best you can. Trying to get sorted, trying to get different medicine goes so far but if you’re more tense because of all the chasing, maybe that is just adding to it. Consider trying to chill out a bit. See if that helps.
I assume you stay well away from coffee (caffeine), smoking, alcohol and any other “stimulants”. I was keen on coffee and chocolate and cutting them out really helped me for a while.
I hope others have ideas, too.
Hoping the best for you,
Hi there Emily,
I was also have migraines daily leading up to my AVM diagnosis and afterwards. I have tried many medications:
Sumatriptan was a bit hit and miss not allowed it anymore but its a good one to try if you haven’t already
Codeine+ibuprofen+paracetamol combo does a good job most times, but I get that it isnt something you can take daily
Propanalol helped for a couple months, so they werent daily atleast, but then stopped working and side effects (fuzzy head, dizzyness) were getting too much for me to up the dose
I am now on amitriptyline - okay this doesnt stop me being tired most days, made me hella emotional at first when I was adapting to it and makes me quite literally full off shit (laxitives are pretty much essential now) BUT migraines are being kept at bay!
I have heard topomax, hydrocodone recommended for migraines but not tried personally. I’ve read on here Zofran recommended for nausea.
My doctor also recommended me to start CBT and luckily I was at the end of a 4 month waiting list - he believed my emotional stress and worry was also to blame triggering migraines and I think he was partly right! Only been two sessions but really is helping me emotionally cope with it all.
These neurologists that have seen you - have they got experience with AVMs? Is it possible to send your scan and info through to exprienced radiologists and neurosurgeons in AVMs? Im sorry its been so difficult to find a specialist that will help or atleast give some reassurance that they will keep an eye on it.
Best wishes and welcome to PM me if you want someone to talk to or vent to or whichever,
I have tried sumatriptan and that didn’t even help a little bit. I went on Topomax last year and it had the worst side effects I have ever experienced, and I’m pretty sure it left me with nerve damage in my feet. My neurologist recommended amitryptaline, but wants to make sure I check with my psychiatrist to make sure it will go well with my current medications.
I am looking into Mayo Clinic since they have specialists for AVM. Both the neurologists I’ve had didn’t even know much about it…and I think that’s the real issue here.
Thank you for your reply!
Richard, thank you again.
I know a big part of my problem is stress, and I need to find an outlet. A big part of my stress comes from worrying about the ticking time bomb I have in my head.
The hard part about cutting out caffeine is that I work in a coffee shop and am severely addicted…
I keep telling myself I need to stop, but I get caffeine headaches so it’s hard to quit.
Sad to hear that you had such a bad experience on topomax! Propanolol could be worth a try if the amitriptyline isnt compatible with your other medications. Sometimes it takes some building up to the right dose before it works. I had to wean myself off sertraline antidepressants before I could take amitriptyline - might add onto why I was such an emotional mess for the first weeks taking it. Make sure to warn loved ones in advance that you may need some extra support/patience whilst your adapting if you do go onto the amitriptyline. It is definently worth the side effects, Id tolerate most things to prevent daily migraines tbh. Everybody reacts differantly, but I hope it works for you too helping preventing your migraines.
Being on the mini pill (progesterone only pill) has helped me a lot too since now I don’t have monthlys and so atleast thats one less pain to worry about!
That makes alot more sense as to why they were being so unhelpful! I am sure you will have a lot more help once you go to a specialist that has plenty of experience with AVMs. I’ve heard great things about the mayo clinic - popped up loads when I was first researching upon diagnosis of this AVM. Also neurosurgeons and neuro-radiologists (rather than neurologists) with experience in AVMs will have a better understanding of the treatment options.
I have a good feeling that you are the right track to find some answers soon getting in touch with the mayo clinic!
Once you get through the caffeine headache, it is good on the other side, honest. I went for it all in one go and I do think I had the worst headache ever but it really did help once through the other side. I’ve also discovered some very good decaf. It really does exist.
I agree with Corrine, too. If the neuros you’ve been seeing don’t know what they’re looking at, you’ve got to keep moving. But self-help is also important. Good hydration, good sleep and nil caffeine!
In support for Emily, I have a large malformation deep in my brain that had bled once, and possibly wept again. I have seen 2 extremely good neurosurgeons, and in both cases the decision was to not perform surgery due to “100% risk of complication”. I’ve had horrible migraine type headaches daily, for as long as I can remember. I’ve taken Tylenol x strength, daily, also for as long as I can remember. I’ve been on morphine daily for about 4 + years, which still doesn’t kill the headache, so also still take Tylenol in an effort to calm the pain down. My AVM is a cavernous malformation, meaning the blood pressure is static. A bleed is usually just one globe rupturing of a Blackberry type of structure due to thin walls of the gloges of the malformation. You didn’t mention what type of avm you have. The type of avm contributes to the decision the neurologists make as some avm’s have positive blood pressure.
Things that help are lots of rest, take it slow, drink lots of water, and I wear shades most of the time outdoors. When Headaches are bad, and sensitivity to light is very high I’ll wear shades at night while driving (not recommended due to the risk of accident)
Accepting what the specialists tell us can be a challenge, as we want to be normal. I found accepting what they told me helps. Don’t live with the fear that you could possibly have a bleed. Accepting, taking it easy, and taking care of yourself helps greatly.
I find it strange that my specialists aren’t sure that my constant, daily horrible headaches are associated with the avm, yet so many of us express that we have migraine type headaches.
I am at the same condition. Doc’s have up. I am on Ayurveda Medicine and I feel better though I am not in touch with my surgeon. Ayurveda has cure without GK and surgery. I am from India
I am sorry to hear that you’re still having migraines. I had a bleed in Feb. 2013. They did not remove the AVM, told me it would be best to wait for a second bleed before considering surgery, and so I have been managing life with it. For three years afterwards, I had terrible headaches, needed to sleep every afternoon. It will soon be five years since my bleed, and I can tell you that the headaches have mostly stopped, as has the overwhelming fatigue. I manage my excercise, sleep and diet, and I accept my limits knowing that I am doing so to maintain my quality of life. It takes a very long time for our brains to heal, but with patience I do believe your condition will improve.
Best of luck. I know how hard it can be some days but keep up your faith that things will get better.
I’m sorry you’re hurting and completely understand. I had my avm found after a pretty sizeable brain bleed. I’ve always had headaches but since the Hemorrhage, they are 1,000 times worse.
I have done a lot of research into different methods of pain control for migraines and just got approved for Botox. Have you tried this?
I start mine in a couple of weeks but many people, particularly women for some reason, have good results. I’m keeping my fingers crossed. I know how hard every day life can be when you’re in severe pain.
Blessings that you find something that works for you and that you never have to experience a bleed.
AVM Rupture- Occipital Lobe: May, 2017
Onyx Embolization: July, 2017
Hi guys, thank you for your kind words.
Since my neurologist was no help, I talked to my primary doctor and she recommended Botox for my migraines. I’ll be in touch with a pain specialist to schedule that. I’m excited since this has been known to work very well.
Thats great news Emily, please do let us know how the botox goes and if it helps with the migraines might have a look into it myself!
Did you manage to get in touch with any neurosurgeon/neuro-radiologists who are familiar with AVMs for more opinions regarding treatment options?
Good luck with everything and best wishes!
Emily, i am 5 years post avm. I still have a mass of debris left from gamma ray radiation. Sumatriptan does help, but only for a few hours. Have you tried dhe therapy. My duke neurologist tried this for me, but it did not work. Dr. Ali Zomorodi was my neuro surgeon at duke. Since my surgery, migraines are no better. I can relate them to two things. Hormones and stress. Fortunately i have a wonderful general practitioner. He prescribes hydrocodone and hydromorphone. Hydrocodone is daily and hydromorphone is level 8 and up migraine. Don’t push so hard for surgery…you don’t know what can happen afterwards. Mine was a 4 located in the sensory/motor skills area of my brain. I have loud ringing in my ears…the louder, the closer to a migraine. I have left side motor skils issues, severe pain where the avm was and am lucky to be alive. If you are a candidate for gamma ray radiation, i would consider that before surgery. Mayo, duke, and emory are the only places that work on avms in the brain on rhe east coast. Choose wisely and not just because the location is closer to you.
Botox does help me but after getting it built up in my system, after a rounds of shots, i was in bed for three days after. Botox also impacted my emotions. I switched over to nerve blocks for the last year. I am going to try botox again next month. It is a strange feeling. You know you are having a migraine, but you don’t have the pain…if that makes sense. My head is still sore to the touch…but i could keep going with my day to some degree.
Have you explored onyx medical glue? Dr. Razack in Tampa FL. saved my life. You can locate him at ■■■■■■■■■■■■■■■■■■■■■■■
I pray that you find peace and comfort