I Thought (Hoped) A Mistake Had Been Made

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It's been a long time since I've checked in. A couple of years ago, I was diagnosed with Epilepsy. My neurologist was rude, wouldn't answer questions and eventually I got rid of him. I had no confidence in his diagnosis or him as a doctor. I found another neurologist through Epilepsy.com who I liked much better. At the time of diagnosis, I was having dizzy spells and my balance was sometimes crazily off. I had times where I was extremely exhausted, I had to walk with a cane to help me stay upright.

Anyway, the new neurologist put me in the hospital for a week to try to confirm the diagnosis and to determine what, if any, type of seizure I was having. I had nothing in the hospital. The doctor didn't say I didn't have epilepsy but she also insinuated that I probably didn't have Epilepsy. I absolutely hated the medication I was on and had been on several trying to manage the horrible side effects. When I called her to make my follow up appointment 3 months after I got out of the hospital, she was gone. So I didn't get a new perscription, that was in November of 2014. In December, my dizzy spells started up again but they were much less severe than they had been in the past and very rare so I decided that they were most likely the cause of the other meds I'd been on.

In March I found out that I had midl COPD and so I thought that the lung issues were the cause of my dizzy spells. I don't do well in the high humidity of the summer so I was sure that was the cause of my issues. I didn't consider that although I have difficulty breathing when it's very humid, I had no dizzy spells. The dizzy happened more and more so by July I knew I needed to see a neurologist again.

Recently I had to go home to attend a serious family medical crisis, my sister had a seizure (we think), fell into her pool and drowned. I have another sister who also has seizures (although she doesn't take medication for them). I can see the importance of getting on meds and staying on them. Within the last month or so one thing that I've come to recognize is that sometimes when I'm walking I have these dizzy sensations. It's almost like I have a quick burst of dizzy or lightheadedness with each step. It literally feels like bursts of light or something going off in my head. Somehow I related this to my COPD and throught the use of my inhaler would take care of the problem. It didn't.

Comments

All people have a tolerance

Submitted by just_joe on Sat, 2015-08-29 - 13:33

All people have a tolerance to some seizures.All a seizure is is an electrical impulse going off in the brain causing a chain reaction. Now what you posted do sound like they could be seizures or parts of seizures. You had no confident in your neurologists diagnosis If they ran tests and didn't find anything fine. But certain tests like the EEG can only read to a certain depth of the brain the electrical activity could be deeper.As for your sister having seizures and not taking medication for them has she ever thought she could get seizure free with the meds? You see I also have a cousin who had seizures and with medications she got seizure free. They did stop her meds but before being completely off she had a simple partial seizure. They put her back on meds and she is happy has a family has been seizure free for many years. I would rather take medications and be completely seizure free then have a seizure now and then. But I know hat is causing my epilepsy and it took tests. In the battery of tests done in the early 1960's they saw everything being normal. That was until I fell asleep in the last test they ran which was another EEG. In that EEG they found abnormalities (spikes or waves or both). The neurologists then went and looked closer at the MRI of that time period and in a closer look in that area of my brain they found scared brain tissue.I have COPD also and know that it does help in getting more oxygen into your body. Which at times gives your brain more oxygen but it doesn't cause dizziness.There are triggers that people can see which can cause seizures in many people. This site has a list of them but they aren't the only triggers.I listened to all of my neurologists except the first ones since I was 12-14 and back in those days the neurologists talked to the parents only. They never answered my main question which was What is Epilepsy. When I moved to Dallas in 1970 I had to get another neurologist and I have been with that group since then. I was asked questions which I answered. For each question I was asked I had a question for him. I kept a good relationship with him for years. One would move and I got the next, He retired and the next moved, his replacement retired, his replacement moved. I worked with the last one who is retiring. But in that period of time the number of seizures I was having was reduced and now is a seizure every 8-14 days. The time in those seizures has been shortened to 5-8 seconds instead of 2-10 minutes. The time to get back to normal is now a few seconds instead of 15-48 minutes and at times longer. All of the progress made had been done by asking questions and listening and working with them since they are specialists. We talked about different medications, Either by themselves or coupled with another medication. So by all means keep a good relationship with all your doctors and do ask questionsI hope this helps and you get your answer as well as getting the assistance you needJoe

All people have a tolerance to some seizures.All a seizure is is an electrical impulse going off in the brain causing a chain reaction. Now what you  posted do sound like they could be seizures or parts of seizures. You had no confident in your neurologists diagnosis If they ran tests and didn't find anything fine. But certain tests like the EEG can only read to a certain depth of the brain the electrical activity could be deeper.As for your sister  having seizures and not taking medication for them has she ever thought she could get seizure free with the meds? You see I also have a cousin who had seizures and with medications she got seizure free. They did stop her meds but before being completely off she had a simple partial seizure. They put her back on meds and she is happy has a family has been seizure free for many years. I would rather take medications and be completely seizure free then have a seizure now and then. But I know hat is causing my epilepsy and it took tests. In the battery of tests done in the early 1960's they saw everything being normal. That was until I fell asleep in the last test they ran which was another EEG. In that EEG they found abnormalities (spikes or waves or both). The neurologists then went and looked closer at the MRI of that time period and in a closer look in that area of my brain they found scared brain tissue.I have COPD also and know that it does help in getting more oxygen into your body. Which at times gives your brain more oxygen but it doesn't cause dizziness.There are triggers that people can see which can cause seizures in many people. This site has a list of them but they aren't the only triggers.I listened to all of my neurologists except the first ones since I was 12-14 and back in those days the neurologists talked to the parents only. They never answered my main question which was What is Epilepsy. When I moved to Dallas in 1970 I had to get another neurologist and I have been with that group since then. I was asked questions which I answered. For each question I was asked I had a question for him. I kept a good relationship with him for years. One would move and I got the next, He retired  and the next moved, his replacement retired, his replacement moved. I worked with the last one who is retiring. But in that period of time the number of seizures I was having was reduced and now is a seizure every 8-14 days. The time in those seizures has been shortened to 5-8 seconds instead of 2-10 minutes. The time to get back to normal is now a few seconds instead of 15-48 minutes and at times longer. All of the progress made had been done by asking questions and listening and working with them since they are specialists. We talked about different medications, Either by themselves or coupled with another medication. So by all means keep a good relationship with all your doctors and do ask questionsI hope this helps and you get your answer as well as getting the assistance you needJoe

All people have a tolerance to some seizures.All a seizure is is an electrical impulse going off in the brain causing a chain reaction. Now what you posted do sound like they could be seizures or parts of seizures. You had no confident in your neurologists diagnosis If they ran tests and didn't find anything fine. But certain tests like the EEG can only read to a certain depth of the brain the electrical activity could be deeper.As for your sister having seizures and not taking medication for them has she ever thought she could get seizure free with the meds? You see I also have a cousin who had seizures and with medications she got seizure free. They did stop her meds but before being completely off she had a simple partial seizure. They put her back on meds and she is happy has a family has been seizure free for many years. I would rather take medications and be completely seizure free then have a seizure now and then. But I know hat is causing my epilepsy and it took tests. In the battery of tests done in the early 1960's they saw everything being normal. That was until I fell asleep in the last test they ran which was another EEG. In that EEG they found abnormalities (spikes or waves or both). The neurologists then went and looked closer at the MRI of that time period and in a closer look in that area of my brain they found scared brain tissue.I have COPD also and know that it does help in getting more oxygen into your body. Which at times gives your brain more oxygen but it doesn't cause dizziness.There are triggers that people can see which can cause seizures in many people. This site has a list of them but they aren't the only triggers.I listened to all of my neurologists except the first ones since I was 12-14 and back in those days the neurologists talked to the parents only. They never answered my main question which was What is Epilepsy. When I moved to Dallas in 1970 I had to get another neurologist and I have been with that group since then. I was asked questions which I answered. For each question I was asked I had a question for him. I kept a good relationship with him for years. One would move and I got the next, He retired and the next moved, his replacement retired, his replacement moved. I worked with the last one who is retiring. But in that period of time the number of seizures I was having was reduced and now is a seizure every 8-14 days. The time in those seizures has been shortened to 5-8 seconds instead of 2-10 minutes. The time to get back to normal is now a few seconds instead of 15-48 minutes and at times longer. All of the progress made had been done by asking questions and listening and working with them since they are specialists. We talked about different medications, Either by themselves or coupled with another medication. So by all means keep a good relationship with all your doctors and do ask questionsI hope this helps and you get your answer as well as getting the assistance you needJoe

I Thought (Hoped) A Mistake Had Been Made

Comments

All people have a tolerance

Submitted by just_joe on Sat, 2015-08-29 - 13:33

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