Anyone have a brain AVM rupture more than once?

I’m wondering if anyone has had a brain AVM rupture more than once? I’m pretty sure some of you have, and I have been trying to find out what (if any) symptoms/signs to look for? When mine ruptured the first time, I don’t remember a lot, but I do remember that for at least a week (I think more like two weeks) prior to realizing I needed medical care my legs and feet were extremely swollen and numb. I didn’t know why, and I wasn’t even alarmed. I can’t really remember any other symptoms or signs other than generally not feeling well until it got to the point that I was unable to walk. I would take a few steps then my legs would seize (for lack of a better way to describe it). I haven’t been able to follow up with my neurologist because I lost my insurance. For the past week or so I’ve had a headache nonstop, and nothing will ease the pain. I have had migraines for as long as I can remember, and this doesn’t feel like a migraine nor does it respond to migraine medication. If anyone has any advice I would really appreciate if you’d share. I’ve thought of going to the ER, but for anyone who has read my intro, I’m sure you can understand why I’m reluctant to do so (that along with the fact that I don’t have insurance and I have never gotten help from any hospital in my state). I keep telling myself that I’ll just try to tough it out unless I have new symptoms, but it’s getting to the point where I cannot get things accomplished because I’m in so much pain, and I’m not sleeping well etc., so I’m not sure if waiting for more symptoms is the best thing for me to do? Thanks to all of you!! I want to be more active on the site, as I feel so alone in this. Even the few people who have cared enough to read about AVM’s and how they effect your life seem to not understand. I guess it’s one of those things you just can’t understand unless you’ve been there. I think it would definitely be good for me to get on here at least once a week or so and chat with you guys, but it’s like I never even feel like getting online or chatting with anyone. Anyway, I would really appreciate any advice or info! Much love to you all!! :heart:

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Hello. Sorry to hear about you having bad headaches so much. As for an AVM rupturing more than once yes it is possible. That happened to me. After my first surgery I kept having seizures. So they did more tests and scans found 3 very small clots in the brain from the first bleed that had spread. They were very small but that’s what kept triggering my seizures. So 3 more surgeries were done. One of the surgeries I had another bleed because of all the pressure building up in my brain again. It was a small bleed but it affected my right peripheral vision in both my eyes. Driving in 8 lanes is what bugs me the most with my vision. Hope things get better for you.

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Really sorry to hear your headaches are so bad, and the medical side of things has to be so frustrating. Being from Canada with public health care I haven’t had any experience similar with health care so can’t offer anything there. When I had my bleed it started out as the worst head ache of my life, I tolerated it for a couple days, medication like crazy but then started to forget people names, short term memory problems, and then started developing some mobility difficulties. Might be a little stubborn. Finally went to the hospital, then an ambulance to another hospital. For me, although memory is a little fogy and then doesn’t exist on hospital day, it was the head pain that was the biggest indicator to me, particularly first.

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I don’t particularly know where I read it but my neurosurgeon mentioned it that once it ruptures it may rupture again within 1-3 months And strangely mine did exactly 4 months of my 1st rupture. I was having headaches for weeks but not like the worst headache of my life like my 1st rupture What made me rush to call an ambulance was that I couldn’t feel my left side yet I could move it. I recalled having that symptom my whole life and my surgeon let me know it was a symptom so when I felt again after not experiencing it in a long time I was like time to go to the ER and yup it was actually a worse rupture and I had surgery craniotomy and embolization back to back to save my life. So even if they are not horrible headaches I would get them checked out or go to the ER

Thank you for your comment. I don’t remember having a headache right before my rupture. I remember just a general feeling of being unwell, and at least two weeks before I was hospitalized my legs were extremely swollen and numb. Then I went to the hospital when I couldn’t walk more than two steps without my legs seizing. I’m just really afraid of going to the hospital here. It’s awful. In my intro post I think I told about how they claimed that I had been abusing prescription medication that I wasn’t prescribed, but in fact I was prescribed the medication they claimed I wasn’t, and I had been taking much, much less than prescribed! They ended up calling child welfare and taking my son from my custody, and they focused on getting me drug rehab rather than helping me with the medical issues. They didn’t do anything to help me, and I even have a printout where they clearly changed the dates to make it look like the did a scan with contrast while I was in the hospital when in reality they didn’t do a scan with contrast until about a month later. I put on makeup earlier today for the first time in a while, and when I pulled my hair back you could see a vein on my head bulging. I’m not sure if there’s a way to add pictures here to the forum, but I’d kind of like to share that to see if anyone has any thoughts on it. I’m definitely not going to a hospital here in the state I live in, but I don’t know if I should go to a nearby state to the hospital… it’s hard to tell if I’m having any other symptoms because there are so many things that I have/feel that have been that way since the rupture (i.e., forgetting a lot, headaches etc., but this headache is worse than any I’ve had since the rupture and nothing is helping ease the pain)… I wish you all the best!! Thank you again for your comment! How I’d love to live in Canada!! I’ve thought of moving there, but I don’t think I’d qualify for the healthcare since I’m not from there. Take care!

Hello kaiami,

if you wish to upload a photo, go to the upward-pointing arrow at the top of the box you’re typing into. You’ll then get the option of adding an image from your computer or phone.

All the best to you,
Christina from Moderator Support

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Im sorry you went through all of that, sounds awful! I would’ve sued them (but that’s just how I am). I understand your reluctance though my experiences with both ruptures were horrible and definitely don’t want to do that ever again. Ive also encountered both wonderful and horrible health professionals nurses etc. Luckily Im finally AVM free but have developed aneurysms /: so still have to watch out for things while I am relearning to walk

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But at least to me your situation seems like a “watch out” to me.

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I really appreciate it. I’m going to (reluctantly) post these two pictures and see if you guys think - along with my other symptoms (waking up biting my tongue…hard!), and nonstop headache that I don’t remember having with my first rupture (no medication helps, and it’s different than any other headache I remember ever having), as well as numbness that comes and goes on the left side of my body, if this is something that I should be alarmed about. Maybe I’m being too paranoid? But I look at my face every time I put on makeup or wash my face and I’ve never seen anything like this. Might be a bit difficult to see in the picture, I circled it but it’s much easier to see in person than it is to show in a picture. You can feel it easily as well and it’s up into my skull, not just my temple. My AVM is in the right frontal lobe. My husband and I took at least a dozen pictures of this to try to show what it really looks like and this isn’t even close to how much more it bulges in person. Any opinions are appreciated!

As you can see I’ve also lost so much hair since the rupture. Idk if this is something most people experience? I don’t think I’ve seen anyone else mention it, but my memory is so bad I could have just missed it. Any thoughts/opinions/advice is always appreciated!! I just REALLY do not want to go to the hospital just for them to send me home or wreak havoc on my life again if it’s just me being paranoid! Thx! :heart:

I’m so sorry to hear about your horror story!! I don’t know your beliefs and I’m not pushing my beliefs on anyone, but I will definitely keep you in my thoughts and prayers!! I’d really like to know how things go for you. It’s nice getting to know people here and sharing stories! I’ve felt so alone until I joined this forum!! Best to you all!

I’ve lost ALOT of hair my avm was embolized though and a couple weeks ago confirmed gone BUT with bad news of the two new aneurysms so its a never ending story but I have a little one to live for and keep fighting. I wouldn’t want him to know I lost the battle and didn’t give it my all. So if I end up losing, I want him to know I tried my best for him, even if its too much and scary sometimes. But I’ve looked into it not only was the embolization the cause of my hair loss and thinning but could also be the keppra. I take 500mg x2 a day as a preventative measure since Im not supposed to have anymore seizures but only time will tell. I hope to get weaned off soon since I have a feeling that is what caused my hair to fall out and thin out. Chin up though we are all in the same daily battle maybe each of us a bit different. I know its scary but also take care of your health don’t want it to rupture again and have damage you might wish you could’ve prevented. Im relearning to walk and use my left arm but if there had been anything I could have done I would’ve probably run to the ER a week prior since I was experiencing headaches but since it wasn’t the worst headache of my life like my first rupture I didn’t give it much importance. I knew I made a mistake of not giving it the importance when I couldn’t feel my left side of my body. And so my nightmare began and now 6 months into recovery I still beat myself with the couldve’s and shouldve’s

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I just don’t want anyone going through this battle to commit the same mistake I did, and I feel like I was meant to read your post and tell you that its ok to be paranoid and to please go get it checked. I have cried so much for what I lost and what my life could be like if I could have caught that last rupture right on time instead of once the damage was done so please please please get it checked. You mentioned issues with almost losing your child Im sure you don’t want your child to lose you. As a mom I sympathize I had to be away from my baby for months just to be able to be with him because he needs a mommy who can walk, hold him, speak, etc. Hardest decision of my life to be away from him when I never have been away from him but I don’t regret it, it’s gotten me to where I am now almost walking, speaking like before etc

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Glad to hear you don’t feel alone with this, I agree this forum has helped so much! And everyone I’ve met through here has been wonderful to me. If you ever have any questions don’t hesitate to ask :heart:️ I might not respond right away but I do respond (mainly because Im busy taking care of my son or in PT/OT :slight_smile:

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I’m so sorry to hear that! You are so strong and encouraging!! I wish you nothing but the best! I believe with your determination that you will beat this!! I’m kind of lost in limbo. I hate to be repetitive, but in my first post I mentioned that the hospital falsely accused me of overdosing on a prescription medication (they said it wasn’t prescribed to me and it was, and they could have easily seen that in the computer, and my husband took my medication bottles)… anyway, long story short they ended up getting child welfare involved, took my son from my custody for about 8 months (thankfully my dad was able to let him stay there and I could visit him, though even visiting there was very difficult for me)… The strange thing is, I really don’t remember symptoms. I just remember that probably about two weeks prior to being hospitalized my legs were swollen like twice their normal size and felt numb. I had a general ill feeling, but as far as a really bad headache or anything, I don’t recall anything like that. I went to one ER and tried to explain my symptoms, and at that time I was still able to walk. They gave me a bag of IV fluids and sent me home, telling me I was dehydrated and to follow up with my PCP the next day if I wasn’t any better. I was much, much worse the next day. My dad took me to the doctor because there was no way I could have driven, my vision was really blurry and I didn’t recognize my surroundings. I had been going to this same doctor for several years and her office is two miles or less from my home, but for the life of me I couldn’t tell my dad how to get there! He finally found the office and on the way in was the first time my legs seized when I took just a couple of steps. I explained everything to the best of my ability to the doctor and she said she thought I had vertigo, gave me a prescription for Meclizine and sent me home. My husband was flying back into Nashville from NY and I was supposed to pick him up. My dad ended up driving up there and I rode with (I was afraid to be alone)… this day it got progressively worse really quickly. By the time we got my husband from the airport I was pretty much in and out of it. It’s about an hour and a half to two hour drive each way. My dad has diabetes and had to stop for food. I tried to go into the restaurant and fell multiple times on my way in. I made it in then was totally overwhelmed by the environment. I had my husband help me outside and I was just sitting on a bench out in front of the Cracker Barrel. It was really strange, I remember that my head was shaking from side to side uncontrollably, and my eyes kept feeling like they were crossed. This couple came out and just approached me and asked if they could pray for me. I accepted. Once we got back home my husband took me to another ER and they were insinuating that my husband had been abusing me (though he hadn’t even been alone with me for two weeks prior, and I would never let anyone beat on me!)… then they came back and said that I had overdosed on a medication I was prescribed and they said I wasn’t prescribed it. It’s all in my medical records and I want to have it removed, but I’m having to spend so much time focusing on my health I haven’t had the opportunity to try and have the fasle information removed. By the time we reached the hospital I literally couldn’t take more than two steps without my legs seizing and my husband wasn’t able to keep me upright. It was so bizarre. It took so long for my husband to get them to bring a wheelchair. I was sitting in the middle of the parking lot and they were trying to tell him that he needed to get me back into the car and pull up right in front of the door in order to get a wheelchair. He was finally able to get the security guard to bring a wheelchair out to get me, but they never even let me show them what was happening when I’d try to walk. It was a total nightmare and it tore my family apart. I was on Keppra for I think it was 6 months after the rupture, and I know that I never got the medical attention I needed because they were too worried about getting me drug treatment (which was later proven that I didn’t need!)… I remember that when I was in the hospital I noticed that I had these scab like things on my head, and I’d pick at them and I kept asking everyone what they were, but no one would tell me. I’m a very clean person, so I have no idea what that could have been. I thought maybe I had showered and forgotten to rinse my hair, but when I started losing sooooo much hair and I’m still losing it (22 months later), I don’t think that’s what it was. I was supposed to get inpatient therapy to help me learn to use my brain again, but I never got it. All they were worried about was me going to drug rehab. I will never go to another hospital in this state if I have ANY say in it. Sorry for the long message. I’m just not sure if I should be concerned about what’s going on now or if I’m just being paranoid. I don’t want to let it go too long, but I have never gotten good care at any hospital in this state. I’ve had to take my mom (God rest her soul) to every nearby hospital and they never helped her either. It would be pretty difficult for me to go out of state to the hospital, and I don’t want to go when I have no insurance just to be told I’m fine. I used to know my body, but I don’t anymore. I’m really curious if the bulging veins there where the AVM is could be an indicator. I’m just looking for opinions from people who have been through this before. I honestly trust you all more than I do the doctors around here! Thank you for sharing your story! I’ll definitely keep you in my prayers but I believe that you’ve got this! I don’t have much support because my sister chose to believe that I actually overdosed (even though it’s very ignorant to think that considering the full picture), and my mom passed away just a few months before this happened. My dad is here and he cares, but he doesn’t really understand and he doesn’t know how to be supportive. I know my husband and son care, but neither of them really show emotion and they don’t like to talk about it much. I just feel really alone and scared because I used to understand and know my body, but I don’t feel like I do anymore. Anyway, thanks again for sharing your story!! I’m sorry for rambling on, I guess I just need to get it off my chest from time to time, and this bulge has me a bit alarmed. I hope we can stay in touch!! I wish you all the best and I believe that if anyone can make it through you can!! :heart: This is just the hair that came out in the shower and in my brush in the first few weeks to a month at the most after the rupture, and you can’t even tell how much is really there! I pick up soooo much hair off my floors daily and it’s all over everything in my house. I stopped collecting it in the ziplock bag when I realized that they weren’t going to do anything to actually try to help. I could write a book on my experience if I wasn’t so repetitive and forgetful!! Lol! I have to try and find humor in it to keep it together! Much love!
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I totally understand that! If I don’t see the notifications I totally forget about the forum, which is sad because I’ve met a lot of really nice people on here who I’d love to keep in touch with! Take care sweetness!! You’ve got this! :heart:

Hi Kaimi,

Your medical history sounds incredibly traumatic. If you go to the ER with your medical history paperwork, with your husband to support you, I should hope you would get the medical attention you need.
Perhaps it may be worth calling the ER beforehand, explaining your situation, that you have no insurance, but you have had a previous ruptured AVM, and think that you may be having another, and see what your options are.

I hope you are OK,

Cushyb

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@kaiami So when did Keppra enter the picture? You simply can’t use any amount of amphetamines, MOST migraine medications, pain pills and especially alcohol and even cannabis with Keppra or everything goes to hell in hand basket. The sleep disturbances and tongue biting are a red flag. A half a beer can put you in severe crises. There is enough alcohol in a dose of Nyquil to cause a problem. Imagine what a prescription dose medication can do… (especially add/adhd stuff)

Once the interaction happens (and it only takes once), a person will have an immediate reaction very much like an overdose (and it is an overdose) but worse, the siezures and headaches take over (even hallucinations.) In extreme cases there is a condition called Pancytopenia that can cause brain bleeds because of deficiencies in all three types of red blood cells. Doesn’t matter whether it is prescribed medication or recreational stuff, the effects are extreme and dangerous and you become a different person.

Keppra is so powerful that in adults its used to wean folks off cocaine and crack. Once is mixed with amphetamines it increases their effect many many times and generally the only recourse is a complete medication holiday to restore things to a normal state. I’m suggesting you have (or have had a Keppra problem) and its not a minor thing.

BTW there is a thing called Telogen Effluvium Hair Loss caused by calcium channel blockers (of which Keppra is one along with most antidepressants and ampetamines, The combination of the two it can be pretty extreme.) Calcium Channel blockers are miracle drugs for many but when interactions occur things change immediately and always for the worse.

Hopefully through rehab they got things straightened out. If not someone needs to take a long look at your medications and dosages. Medical error is the third leading cause of death.

TJ

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Keppra came into the picture after the rupture, and I was only given it for 6 months. I believe it was approximately 22 months ago when I had the rupture. I never took it with anything else. I didn’t go to rehab, it was never needed. It was a false accusation from the hospital because they failed to do a scan with contrast and they didn’t look at my prescription history. When I was taking the Keppra, the only other medication I was taking was the Antivert. I guess things are getting confusing because I’m making reference to my initial post on here where I tell the entire story of how this all happened. I don’t do any illegal/illicit drugs, and all my doctors know what all medications I’m prescribed. I always check for contraindications when prescribed a new medication, too. I was supposed to receive some kind of in patient therapy that was supposed to help me learn how to do normal daily tasks again and I understood that it would help me learn to comprehend etc. again as well, but due to the false accusations which led to months of the state dragging their feet and drug testing me randomly 2-3 times every week (supervised testing, like they stare at you to be sure you’re not doing anything to alter test results), DHR realized that the rehab center they sent me to for evaluation was recommending treatment for anyone who was prescribed any controlled medication. They were a for profit business. Finally, they sent me to a non-profit drug rehab facility for evaluation and it was pretty quickly (though after thorough testing etc.) determined that I never needed drug rehab. I apologize if I haven’t been clear with my posts. I get very confused about what I’ve shared where (though I haven’t shared a lot of the site). Just my intro and this post and the tongue biting post, if I’m not mistaken. I wish the hair loss was a side effect of Keppra. However, as I mentioned before I had the scab like scaly skin on my head in the hospital the same day I was admitted, and I haven’t had any Keppra for about 16 months. I’m not sure if I should (or if I can or how to) link my initial post to this one so anyone who cares to read can see the entire story. I’m pretty sure I’ve been as transparent about everything as possible, I just have trouble telling things in the right order and perhaps repeat myself or leave out bits of information that would make my posts more clear. If you have any other specific questions you’d like to ask, please do! I certainly don’t want anyone to have the wrong idea about what has happened! Oh, I also don’t drink any alcohol. I used to have a single glass of wine very infrequently, but I don’t remember the last time I had any, it had to have been 6 months or more prior to the rupture. I hope that I was able to clear up any misunderstanding. :wink: Thank you for taking the time to comment and to share the information you did. I believe that you had a misunderstanding of the timeline so to speak, chain of events. I’m talking to a lawyer to try and have the false accusations taken out of my medical record. Please feel free to ask if there’s anything I was unclear on this time. I’m pretty much always in a daze, and since this bulge it’s even more so and more frequently. I’m sorry for any confusion. Thanks again for taking the time to comment!

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Thank you for your comment. I did everything other than call beforehand last time. I have lived in five states and have had a history of chronic illness, but my mom had as well and she was always treated as poorly as I have been. I simply don’t trust any hospital nearby, but I plan to go to TN if I get any new symptoms or my symptoms worsen or don’t get better soon. The only way I would go to a hospital nearby is if I were unconscious and didn’t have any say in the matter. Even my husband doesn’t want me to go to another hospital in this state. I appreciate everyone’s feedback, perhaps I should plan to go to the ER in TN within the next few days? I didn’t notice the bulge until several days after writing the original post, and the headache doesn’t seem to be nearly as severe as it was for the weeks prior to me posting this. Thanks again for your input. I think I’ll talk with my husband tomorrow and make a plan for me to go to TN if my symptoms worsen or don’t improve in the next day or two. I don’t know what I would do without you all! It means a lot to see so many people come together to try and help one another. This is a very scary “adventure”, and with it being such an uncommon thing, I felt so lost until I found you all! I appreciate your well wishes and send them to you in return!

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