Aa
26 w/ Basilar Migraine and Frontal Mass
About 10 years ago out of the blue I fell to the ground. I thought that there was an earthquake and passed out. I kept having "episodes" like this in NY and was told that I was having seizures although there was no irregularities in my EEG - I had both short term and inpatient long term EEG's completed. I also had CT and MRI's completed without any abnormalities. As an infant I had experienced grand mal seizures but since the age of 1 had no further symptoms of a seizure disorder. These "episodes" continued on for about six months and then subsided.
Once again out of the blue about 3 years ago the same thing happened. EEG's were normal, but this time my CT scan showed that there was a 1.5 cm mass in my right front lobe. Along with the odd episodes came left sided numbness, tingling, fatigue, wierd sensations and noises, severe anxiety, and confusion. Within a few hours of an episode the symptoms would subside and I would be ok and go on. Once again... within about 6 months everything cleared up and I seemed fine again. At that I was treated with Lamictal which did nothing and I gradually went off of... My neurologist never really followed through on the mass and never would explain it to me stating that it was too small to worry about... sorry but anything in my head besides my brain i think needs to have an explanation... He ordered a PET scan and the results from that were normal and then he dropped it from there and set me up on yearly MRI checkups.
This past October of 2007 I was at work. It was a normal day and once again... it happened. This time it was worse then ever. My head hurt so bad suddenly that I could have killed someone to make it stop if I had the strength. All I could do is grab my head and fall to my knees... I screamed and that is all remember... I woke up at the hospital heavily sedated but there. I could not talk and nothing seemed right. The doctors let me go home and yet for three more days I could not talk or walk. About a week later I felt ok enough to go to work but not fully up to par and wouldn't you know it happened again. Since that day my symptoms have only gotten worse. I have all the symptoms I mentioned before but my confusion is horrible, words are impossible to come by, stress is awful to manage, my cognitive skills are just completly out of wack, and my left upper eye lid twitches awful. I am in tons of physical therapy and undergoing testing for cognitive therapy now. I wasted about 2.5 months on a doctor who just kept telling me to give it time and it will all go away. Thank god, I have found a wonderful doctor now who is helping me to find answers and getting me the tests and the help I need. I am currently still on the seizures meds from my prior doctor Keppra and Zonegram until my new doctor gets a more defenite diagnosis. He is thinking it is the basilar migraines.
- On a side note, I was 113 pounds before this started... now I have found it is very difficult to eat... everything is bitter and now I am about 89 pounds.... this was never a concern to my old doctor, also the "episodes" have seemed to subside although the symptoms still persist
Prior to the new doc I was admitted for EEG testing and I was found to have nonspecific activity present and the mass has been found to be larger. The next step right now is finding out what exactly the mass is...
DOES THIS SOUND LIKE BASILAR MIGRAINES TO YOU? My records just got transferred so this week I will find out all my blood test results as far as anticoagulant, etc. ANY OTHER THOUGHTS ON QUESTIONS FOR THE DOCTOR? It has just been such a mess switching from doc to doc trying to find a good one. What a blessing to finally get there.
It was a miracle to find this page as well... you guys are wonderful... i do not feel alone anymore!
Once again out of the blue about 3 years ago the same thing happened. EEG's were normal, but this time my CT scan showed that there was a 1.5 cm mass in my right front lobe. Along with the odd episodes came left sided numbness, tingling, fatigue, wierd sensations and noises, severe anxiety, and confusion. Within a few hours of an episode the symptoms would subside and I would be ok and go on. Once again... within about 6 months everything cleared up and I seemed fine again. At that I was treated with Lamictal which did nothing and I gradually went off of... My neurologist never really followed through on the mass and never would explain it to me stating that it was too small to worry about... sorry but anything in my head besides my brain i think needs to have an explanation... He ordered a PET scan and the results from that were normal and then he dropped it from there and set me up on yearly MRI checkups.
This past October of 2007 I was at work. It was a normal day and once again... it happened. This time it was worse then ever. My head hurt so bad suddenly that I could have killed someone to make it stop if I had the strength. All I could do is grab my head and fall to my knees... I screamed and that is all remember... I woke up at the hospital heavily sedated but there. I could not talk and nothing seemed right. The doctors let me go home and yet for three more days I could not talk or walk. About a week later I felt ok enough to go to work but not fully up to par and wouldn't you know it happened again. Since that day my symptoms have only gotten worse. I have all the symptoms I mentioned before but my confusion is horrible, words are impossible to come by, stress is awful to manage, my cognitive skills are just completly out of wack, and my left upper eye lid twitches awful. I am in tons of physical therapy and undergoing testing for cognitive therapy now. I wasted about 2.5 months on a doctor who just kept telling me to give it time and it will all go away. Thank god, I have found a wonderful doctor now who is helping me to find answers and getting me the tests and the help I need. I am currently still on the seizures meds from my prior doctor Keppra and Zonegram until my new doctor gets a more defenite diagnosis. He is thinking it is the basilar migraines.
- On a side note, I was 113 pounds before this started... now I have found it is very difficult to eat... everything is bitter and now I am about 89 pounds.... this was never a concern to my old doctor, also the "episodes" have seemed to subside although the symptoms still persist
Prior to the new doc I was admitted for EEG testing and I was found to have nonspecific activity present and the mass has been found to be larger. The next step right now is finding out what exactly the mass is...
DOES THIS SOUND LIKE BASILAR MIGRAINES TO YOU? My records just got transferred so this week I will find out all my blood test results as far as anticoagulant, etc. ANY OTHER THOUGHTS ON QUESTIONS FOR THE DOCTOR? It has just been such a mess switching from doc to doc trying to find a good one. What a blessing to finally get there.
It was a miracle to find this page as well... you guys are wonderful... i do not feel alone anymore!
I am just starting to figure my way through my issue. I had a stroke like episode which was given the term Complex Migrane. I hope all goes well with your journey.
I finally had my appointment with the hematologist/oncologist today. What an amazing experience. He was the nicest "person" I think I have ever met... I started crying and he have me a hug... it was amazing to see a doctor with human qualities. He orders a ton of tests and took everything quite seriously. He was very upset that I was not given testing as soon as everything started happening and warned me that so much time has passed that it may be more difficult to sort through. What a blessing though. I go back in one week to get the results of 13 vials of bloodwork, ultrasounds of both legs and a MRI venogram. The show is finally on the road.
This is still the same doc and he has no new insight on the fibrinogen so I am waiting to speak with the hematologist on that. Is vasculitis something that is commonly seen alongside with migraines? I have been reading my chart that I picked up from my old doctor yesterday... which would explain to me why my autoimmune findings would be positive right? To me it makes since from my knowledge of vasculitis....???
MEDICAL PROFESSIONAL
Hi,
Was your new physician able to give you any comment with regards to the fibrinogen levels and headaches? Now with the autoimmune test being positive, are they able to look into the possibility that the neurologic findings, fibrinogen and autoimmune findings may actually be a symptom under one common disease process?
Basilar migraines and hemiplegic migraines are usually managed the same way. If these are indeed migraines, preventive therapy with beta blockers and calcium channel blockers is usually the choice of management.It is good that you are undergoing therapy now. You may discuss with your hematologist all your other symptoms .
Was your new physician able to give you any comment with regards to the fibrinogen levels and headaches? Now with the autoimmune test being positive, are they able to look into the possibility that the neurologic findings, fibrinogen and autoimmune findings may actually be a symptom under one common disease process?
Basilar migraines and hemiplegic migraines are usually managed the same way. If these are indeed migraines, preventive therapy with beta blockers and calcium channel blockers is usually the choice of management.It is good that you are undergoing therapy now. You may discuss with your hematologist all your other symptoms .
My doctor I think is finally coming to the decision after recieving back my MRI that I have Basilar type Migraines. I feel more so that the migraines I am having are Hemiplegic only because since October I have had so much clumsiness and weakness on my left hand side and through my research I have found that this is more of something seen with the Hemiplegic migraines. I am still currently experiencing difficulty reading, spelling, counting, putting words together and concentrating. I am undergoing testing with a cognitive therapist at this time for those issues and awaiting the test results. I also finally have my blood work and I am taking the results to the hemotologist with me to have him look at them further. In the test results there was a note that stated that there was a concern that my autoimmune testing showed positive findings???, so with the low Fibrinogen (135) off I go.
I guess my question is... Is the TX the same for both the Hemiplegic and the Basilar migraines? I would be treated with calcium channel blockers or beta blockers, is that correct? Sorry if I am repeating myself, it just takes me forever to type and read what I have in front of me. I am just concerned with this happening every few years and the symptoms going on for 6 months or more that I would like to find a way to prevent it from happening again so that I can try to put my mind at ease a little. Thank you so much for all you help!
I guess my question is... Is the TX the same for both the Hemiplegic and the Basilar migraines? I would be treated with calcium channel blockers or beta blockers, is that correct? Sorry if I am repeating myself, it just takes me forever to type and read what I have in front of me. I am just concerned with this happening every few years and the symptoms going on for 6 months or more that I would like to find a way to prevent it from happening again so that I can try to put my mind at ease a little. Thank you so much for all you help!
Goodness... I forgot to mention... the other problem we are having is that a bunch of my test results are in my case file that my old neurologist keeps putting off transferring. This includes almost all my bloodwork and some of my current scans... GRRR.... we really need this information so my new doc can move on. I may have to move to a law forum next...
As far as the mass goes, this has been an ongoing problem, I have been fighting for three years to find out more information on what this thing is. The neurologist that I saw prior would not put a name or anything to the mass... all it ever was was a mass. On Monday I am to see a neuroradiologist who will hopefully put some of those answers to rest and give more information on the mystery mass thanks to my new team of doctors. Thank you for your help and I will keep you posted for sure.
MEDICAL PROFESSIONAL
Hi,
Basilar migraine is a complicated migraine presentation which is almost difficult to dissociate from strokes ( especially the transient ischemic attacks) and seizures. Its diagnosis follows a criteria .Basilar migraine is a strong differential here but at this point the definite cause of your condition is still to be ascertained. For one , a brain lesion has been shown in one of your scans. The question on whether this is significant enough to contribute to your condition has to be defines or excluded. Coagulation status like the presence of some innate coagulation disorders may actually manifest as recurrent stroke lke episodes, a metabolic disorder, peripheral vascular disease and hormonal problems also need to be ruled out.
I suggest you maintain an open line of communication with your physician and do keep a close follow up. What does your current doctor think of the mass in the frontal lobe?
Do keep us posted and I commend you for your proactive and positive attitude .
Basilar migraine is a complicated migraine presentation which is almost difficult to dissociate from strokes ( especially the transient ischemic attacks) and seizures. Its diagnosis follows a criteria .Basilar migraine is a strong differential here but at this point the definite cause of your condition is still to be ascertained. For one , a brain lesion has been shown in one of your scans. The question on whether this is significant enough to contribute to your condition has to be defines or excluded. Coagulation status like the presence of some innate coagulation disorders may actually manifest as recurrent stroke lke episodes, a metabolic disorder, peripheral vascular disease and hormonal problems also need to be ruled out.
I suggest you maintain an open line of communication with your physician and do keep a close follow up. What does your current doctor think of the mass in the frontal lobe?
Do keep us posted and I commend you for your proactive and positive attitude .
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