It a real bad head ach that doesn't go away!!!
Thank you all I have shared all of your responses with my husband. I have not had any other symptoms other than sleeping a great deal on Sat but felt more energy on Sunday and again today. I sent the message to my pain neuro and did not hear back but I did mention I have an appt with the stroke neuro who is in charge of my case- If I start to have any other additional symptoms I will go to ER
Thank you all again for sharing
Angela
Good planning. When in doubt always go the ER! Please keep us posted!
Neurosurgeon is putting my on the call list so if he has cancellation they will call me, luckily only ten min from his office. So glad my reg Dr sent me to this guy.
As has been said before, if you are having a bleed you will certainly know. You will basically feel such pain that you will think you are dying.
Better to be safe than sorry!!
Just wondering the same thing about bleeds. My concern is that I have severe headaches every day that are controlled with heavy pain killers. I asked my doctor if I might have brain swelling or possibly a bleed because they were getting worse and was told "No" My doctor said that if I had either, the pain would be so bad that I wouldn't be able to work. I work a very physical job that causes all kinds of aches and pains. I waited 2 months for my scheduled MRI and worked that whole day and every day, feeling no different then I had since I asked the question. MRI showed severe brain swelling. Now I'm afraid that if I can't tell if my brain is swelling, how will I tell if it bleeds. Strange things these AVMs are.
This is a bit of an oversimplification. I have read studies that state that most avms have had many microbleeds before the big, bad rupture. These microbleeds can cause some amount of neurological damage and can create the types of symptoms that many of our members experience before diagnosis.
Hello D&D
I think you need a new doctor what a jerk he should of sent you for a CT scan to see if there was swelling on your brain. I have had that and it was horrible but I worked everyday for three months and finally had a massive stroke and went into a coma.
I think since most of us have high pain thresholds which can be proven by a nerve study that we are to take pain where most people would be in a ball on the floor. Personally I get mad not crying when I am in pain and doctors have told me so many times...oh you could not possibly have ....because you would be crying and I say really I want to punch you in the face...then they do a test and say Oh you do have a broken foot, kidney stones, a golf ball sized gallstone oh five blood clots in your brain. It is so important to have a doctor who really knows you and does not treat you like a cookie cutter patient. We are very rare and need special care.
I am very lucky that most of my doctors now understand that rare for me is normal. Yes these AVMs are so strange and that is why this site is so wonderful cause I have learned more here than at Stanfor. Also suggestion always get your records that is how I found out post stroke that I blew out my left transverse sigmond vein which was the area of my DAVF.
do you take magnesuim to help with the head pain?
Angela
Hi Angela,
Just a question re: high pain threshold of pain. I have always believed I have a high threshold of pain compared to most people I know, not that I go around hurting myself or anything like that. An example would be when I had a torsion of an epididymal appendage (it's something only a man would experience) and although I called the doctor about 10 in the morning, I sat, well barely sat, for about 6 hours before I went to his office. He was angry at me when I got there and he sent me to the hospital immediately for radiology test of some sort.
There were a few others incidents comparable. Why do you think that is?
Thanks,
j
No Angela, I haven't tried Magnesium, but I will look into it. I think what most doctors don't understand is that we've dealt with this pain for a very long time and have learned to handle it to get through life. In my case, I have a bunch of pain killers on top of it in order to manage the pain even more. I've had these headaches for 30+ years being told I just had migraines and the AVM was only discovered in 2011. Had Gamma Knife in 2012 and in the last 3 months the pain has gotten worse due to brain swelling. My problem now is that I live in a very small area and the Neurologist I have has zero experience with AVM's and the local hospital has even less so I'm afraid if I did have a bleed they wouldn't know how to help, so wisely, I was sent to Mayo. They are a 7 hour drive from here. I'm getting the same reaction from them though because I'm not crying about the pain. So other then this site I feel as if I'm completely on my own. This is why I'm wondering what to actually watch for if I were to bleed or have a stroke. The pain killers cover a lot. As of now I'm getting pain in the back of my head steady that breaks through the pain killers. Probably time to go back on the Dexamethasone, but the side effects are worse then the pain and I do get them all...lol
Well I've babbled long enough, but thank you for responding...take care
I went back through this topic and noticed that you mentioned âtingling and feeling as if your hair is being pulled.â Mine feels the same way and itâs caused from brain swelling. I wouldnât wait to get it checked especially if you have a stiff neck with that. It will lead to seizures or possibly worse if you wait too long.
Please take care
Hello tdz103m
I did not have any problems with m brain other than migraines until I was 43 but I have always had a high threshold of pain which I believe comes from my dads side but my half sister on my moms side is pretty tough...but my mom admits she is a big baby.
My long time Italian dentist told me that Italian people's nerves run different but I told that to my Italian doctor who was doing a biopsy and she said that statement was wrong she said that I metabilized drugs fast which I am still not sure it is true. I believe it has something to do with our nerves that we are born with and then combining it with having pain you body and brain learns to push through it. I once got bit in through my chin by my boyfriends parents dog and I was more worried about bleeding all over their white carpet and sofa then my face which I needed stitches and you could see the bone.
The way I explain it to doctors if I am feeling something it usually means surgery or something is broken.
My old Neuro was the one to finally be concerned when he did a nerve study and was zapping me and I was not moving...He was very concerned and yelled out Aren't you feeling this?
My nerves are good and I dont have any spinal issues I just think we dont feel the same as most people. I also have a friend who you can not touch his head at all cause he is ultra sensitive and its like tickling someone.
I am sure there must be a medical term I will ask my pain doctor when I see her at the end of the month
Angela
Hello D&D
Try Magnesium I take 500mg to 1000mg depending on how I feel sometimes I take one that is 1000mg then I have 250mg and I will take them three times a day
Wow that is so scary you had pain for so long and just got diagnosed in 2011.
I think its pretty standard that with AVMs and DAVFs that people have to have follow up treatment.
I am glad you go to Mayo now. I find it helps to get the doctors attention is to not look so well when you go to the appt. I think like you said we are used to pushing through the pain and not crying we tend to be judged if we look good/ well kept.
I know when I had my stroke I could barely take a shower and remember to brush my teeth. I also take someone with me like my husband or my sister who can be my advocate which also seems to help.
I have been doing botox shots 30 around my head and a few in my jaw to help with the pain. I had pain after the stroke and then new worse pain after my angio and embolism but that was 7 hours and I was still healing from the stroke.
My head has not gotten worse since I posted the question and I am seeing the stroke neuro on Thursday about the DAVF. The sounds are happening more now but not as bad as when I had surgery but now I know the systems. I am flying next week and kinda scared but have started to take baby aspirin.
Thanks for reminding me about the stiff neck. So far that is okay as well and my husband is still doing all the driving.
Have they given you a CT scan or MRI lately?
Angela
Angela -
I tend to feel pressure at any given time - quite randomly.
What usually helps me for the moment is to keep calm/relax, drink some tea, practice some breathing exercises, watch a funny show or listen to soothing music, take a warm shower, some tylenol and rest. I think us AVMers are going to experience these feelings of pressure or pain where the avm is/was all through out our lives just because our brains are wired differently from everyone else's. Hope all is well! Don't forget to smile. ^.^
Jaana
Thanks!
I guess it just goes back to the human body being a remarkable instrument! Take care.
1 Like