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Nov 18, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

I have filled out the form to apply for the testing but have not got a reply back yet. My headaches have got worse lately. I was back in the ER last week due to the severity of the headaches and dizziness. Since I have went 4 yrs with these I have noticed they get worse with the cold weather. I have a appt with a different neurologist that specializes in pain management for these in Dec so I hoping I have better luck with him. I will let you know what the outcome is with this doctor. They say the steroids help with the pain but I have not had any luck with them helping me. Good luck and I hope you feel better soon!

Oct 30, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

About a year ago they tried to blame my headaches on my eyes too. I do t even wear glasses. I have 20/20 My eye doctor said that my eyes were not the cause. They were telling me at one point that my headache couldn’t be cause by my Cavernoma because there is no nerves there to send pain signals. Another person with Cavernoma actually told me that she has the same pain I’m having and her doctor told her it was also impossible to cause headaches. I think they are just learning about what we have and they are just starting to learn what this is. For example my son had a allergy called FPIES it’s a intestinal allergy. Took him to the ER when he had a attack and I had to tell them what it was and they had to look it up to know how to treat it because it’s a very uncommon allergy. I don’t blame them for not knowing but when peaople have rare thing not everyone knows how to diagnose and treat it. If you find anything that works for you please share and I will do the same. I’m making a appointment with Dr Saber to see if this is something that might work. I will let you know what I find out

Oct 30, 2016 · Small Vessel Disease in the Brain & Cavernous Malformation in Stroke & Cerebrovascular Diseases

@jeans how did your appoint go at the Mayo Clinic? I have been living with this for 4 years now. I’ve been going to U of M in Ann Arbor, MI. I have a Neurosurgeon, Neurologist and Pain Specialit. Nobody can seem to help me. The Neuosureon doesn’t want to do surgery due to it being deep in my brain. My Neurologist can’t seem to find any meds to help me with the pain and other symptoms so he sent me to the pain management and they have the same problem. Nothing seems to be working on me. The only thing that seems to lessen some of he pain is opioids but they aren’t good for long term. My pain management went opioid free so they want to try Suboxone but I hear it’s a ugly drug so I don’t want to try it. I have never had any type addictions so I don’t know why they want to even try that. I was told by another doctor out of Dearborn, MI that don’t think I will benefit from it. I have pain 24/7. Sometimes it mild sometimes it’s sever. On a pain scale from 1-10 most of the time it’s only a 4-5 but a lot of the time it’s 9-10. When the pain gets to about 6 I start to get dizzy feeling and my left eye starts getting really blurry. By the time the pain gets to around 8 I start to have stabbing pains behind my left eye and get whiteout vision for a few seconds. Do you also experience any of these systems? I think doctor are still trying to figure out how to treat Cavernous Malformations. Most of the doctors have tried to treat my pain like migraines but none of the migraine meds seem to have any effect on this. I’m discouraged because nobody seems to have any answers.

Oct 30, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

Your welcome @hopeful33250. This new med is for headaches but most of us with a Cavernoma have headaches like you can’t imagine. I’m willing to try anything to lessen my daily headaches. Does anyone’s headaches stay with them 24/7? I always have a headache now but it changes intensity levels. Using a pain scale from 1-10 some days I only have a 3 or 4 and some days I have a good 9 or 10. My doctors have tried triptans, anti seizure meds, nerve blocks and a hole garbage can full of different meds and nothing so far has worked. I’m willing to try anything at this point. The only thing that lessens the pain some is opiods but those aren’t good for long term. My Cavernoma is in the frontal lobe in the left side of my head. When the headaches get beyond a 6 on the pain scale my left eye starts getting to feel like someone is stabbing my eye from the backside. Then it gets blurry. Sometimes I have whiteout flashes. I get dizzy a lot throughout the day also. Does anyone else get these same symptoms? @guzzie have they done a angiogram yet?

Oct 29, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

@guzzie they did a angiogram and said that their is 2 different kinds of Cavernoma. One is extremely bad and that one can respond to radiation. The other kind is still dangerous but it does not respond to radiation. I have the later one. They don’t think radiation will work on me. Dr Saber is the name of the Neuologist that is doing studies on a drug for headaches. Here is a article I have seen. He was on a commercial for the same thing recently. https://www.google.com/url?sa=t&source=web&cd=2&ved=0ahUKEwis0qTK14HQAhXMLSYKHcBRChIQFggeMAE&url=http%3A%2F%2Fdetroit.cbslocal.com%2F2016%2F10%2F10%2Fmigraine-sufferers-sought-to-test-new-medication-in-ann-arbor%2F&usg=AFQjCNEzo5TrP-1o6MaWY_G705pMXSd0kg&sig2=6rrTsthWW-vfTwQe1d_www

Not sure if this drug will work. At this time though I’m like you I’m willing to take a chance to feel some relief.

Oct 28, 2016 · Cavernoma in Stroke & Cerebrovascular Diseases

About 4 years ago I got a excruciating headache. I’ve never had headaches before. I would only get a headache once every couple years. It was so bad after 2 days I went to the emergency room because it was like no headache ever. I thought my eyes were going to pop out of my head. They originally diagnosed me with a aneurism. Then they did more tests and said it was a Cavernous Malformation. I was in the hospital for 14 days at U of M in Ann Arbor, MI. My Cavernoma is in the left frontal lobe. It was only 3mm when this happened. It is now 6mm. They have sent me to Neurosurgeons, Neurologists and now pain management. The Neurosurgeon said they don’t want to do surgery do to it being so deep in my brain. Neurology tried every drug imaginable and nothing worked. They put me on Oxicodone which doesn’t take the pain away but makes it manageable. I have done nerve blocks which is 6ahots in my head to see if that work but it didn’t. They have tried Keppra, lamitctal, god there is too many to count or remember and nothing seemed to work. Now my pain management went Opiate free and they want to put me in some drug called Suboxone but I heard it’s a ugly drug and don’t even want to try it. Now I am in major pain daily with no relief. I take Norco but it seems to make my stomach feel yucky. Since you can’t take anything like Asperin, Alieve, Motrin or any NSAID it makes it hard to try to find something to take. I have also had anxiet due to this because you feel like your just going to hemerage it hurts so bad. A lot of people have seizures due to Cavernomas but I don’t have them. Hang in there I heard about a doctor in Ann Arbor that has found a new trial drug to help the pain. When I locate his name I will share. If you hear of anything please do the same. Hopefully people like us will find relief one day.