Advocating for my new self

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Shelley3297

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I am a 49 year old woman, living in NE Wisco, and had what i thought was my first seizure last Friday. Neurologist i saw yesterday thinks that the "dizzy spells" i have been having for the last year may in fact be seizure activity (family doc has been doing blood work and various other tests, but finding nothing spectacular so far). I have several tests scheduled this week to try to find out what is wrong with me (eeg, mrv, mri), and so far CT and xrays have all been normal. As a person that needs to know the why behind everything, my biggest fear right now is not knowing the answers. Do any of you have any specific advice for how to advocate for myself, and help me to ask the right questions to help my health care team, help me with all of this? My seizure last week happened while i was driving and my hero of a son actually had to get his foot over the council, slam on the brake, remove my leg from the gas pedal, and slam the car into park. I did lose consciousness, and was extremely confused for quite some time afterwords. My son says that i tensed up, and my eyes were semi-open, but i was out of it. No tremors or shaking though. Can some forms of epilepsy be caused by heart issues? I ask, because since the incident, i have felt very weak, and feel like i constantly have to take deep breaths to get enough oxygen, and a heaviness in my chest.....but my BP and pulse are fine, and they have not found any issues with chest xray or tests yet. (I have echo scheduled next week)
 
Hi Shelley,

Welcome to CWE! You may want to ask your Dr. to do a Spect and Pet scan on you they show a lot more detail as to
what is going on in a persons brain and a video e.e.g. wouldn't be a bad idea either.
If I may ask did you have a headache after the possible seizure and were you really tired? This often happens to me
after I've had a seizure and I want to sleep for about 2 hours.
My best advice to you is to write down on a calendar what time these possible seizures happen and describe them
often when a woman is going through her month cycle or her change the seizures can increase or decrease do to hormones
changing.
You may want to ask your family Dr. to refer you to see an Epileptologist which is a Dr. who specializes in epilepsy this
is where I got the most help and my Dr. found out that I had damage so deep in my brain that not a single test showed
anything and it wasn't until I had surgery to reduce the seizures that they found all the brain damage. Yes, heart problems
can sometimes cause seizures so you are playing it smart seeing a Dr. about that.
I wish you the best of luck and May God Bless You,

Sue
 
Hi Shelley, welcome!

The first few weeks or months after a possible seizure can be the most confusing ones in some ways. You are struggling to understand why your brain is misbehaving, while your brain is misbehaving. I hope your docs can find out more about what's going on and what's causing it.

Heart problems don't usually cause seizures (it can be the other way around), but heart problems can sometimes cause seizure-like symptoms. Especially if you have a history of heart disease in your family, your doctors may test for something called "vasovagal syncope", a cardiac arrhythmia that can cause dizziness and fainting.

If heart issues are ruled out, your neurologist will consider your symptoms and other test results to try to confirm or dismiss an epilepsy diagnosis. An abnormal EEG is usually the standard for confirming epilepsy but, as Sue mentions, it doesn't always provide enough data. That's one reason why tracking your symptoms -- dizziness and any other odd episodes -- can be helpful. A trained epileptologist can often make an epilepsy diagnosis based on symptoms alone.

Your current sensations of breathing difficulties could be caused by anxiety or stress -- but they could also be a kind of seizure! Often epilepsy takes the form of "partial seizures" where you experience unusual physiological symptoms -- dizziness, anxiety, shortness of breath, feelings of dread or nausea, etc. If you were placed on anti-seizure drugs after your those could also be a potential cause.

Because epilepsy can have many forms that overlap with or mimic other conditions, the more information you can provide to the doctors, the better: Family histories of heart trouble, seizures, migraines. Any changes over the last year -- stress, diet, sleeping patterns, hormonal. Any and all unusual symptoms -- cognitive, visual, sensory -- as well as their context: Time of day/month, how long they last, how frequent, what form they take. Even if they seem unimportant!

It's also very important to bring a friend or family member with you to any appointments, especially someone who may have witnessed any episodes. Ask them to take notes during the visit -- it can be hard to remember when you are tired or stressed and are presented with a lot of information. Don't be afraid to ask questions, and if something seems unclear or confusing don't leave the appointment until you understand. Docs don't have all the answers, but they should communicate what they hope to determine with tests, what possible diagnoses might mean, what they can know for sure, what is still in doubt. It's a plus if you can email the doc with any follow-up questions. If the doc prescribes medications, make sure to ask about what to expect — what you might feel and how soon, how the medications work, possible side effects, contraindications, etc.

We are not doctors here, but we can provide anecdotal advice and lots of support! Please feel free to ask more questions or just vent. I hope you feel much better soon.

Best,
Nakamova
 
Thanks so much folks! I have actually been keeping a sort of diary of some health stuff for about a year, since the first "episode" i had that I thought was fainting (I was alone, so no one to help me define it). But i am definitely upgrading this diary, and keeping better track now. I can tell you that my episodes over the last year, have coincided with my period to some extent. I do have heart issues, as well as migraines in my family, and am a migraine sufferer myself. Porkette, i am a headache sufferer along with migraines, for many years, so yes i did have a headache and was exhausted following my seizure. I am lactose and gluten intolerant, and some years ago i went dairy and gluten free entirely. My headaches subsided for awhile, but have come back since i had covid last year. I had a severe gerd flareup that lasted months after covid, and have since quit drinking altogether. I think the most annoying thing is that i am the healthiest i have been in my entire life.....up until the episode on Friday (which my son and the docs think was a generalized tonic seizure?) i regularly exercise, eat healthy, am sober, and have lost 50lbs safely in the last year. I have sleep apnea also, (i am just a bucket of fun;), but i have a cpap machine and get a good 7 hours of sleep per night. Adulting is a bitch, aint it!?! Anyways, thanks so much for your insights, i will definitely be researching and looking into a doc specializing in Epilepsy in my area as soon as i can, unless of course they do find something else they think might be causing my issues. And i like the idea of having someone with me when i see the doctors, and of writing down all my questions.....i am starting a new journal today that i can use for all for all of this. Much love, and please know that the help and support you are providing here is immensely appreciated, THANK YOU!
 
Hi Shelley,

Before I started having seizures, I began having bad migraines headaches and then the seizures started up. You mentioned that you
have sleep apnea. That can also be a cause of your seizures. I was waking up in the morning feeling really exhausted a few yrs. ago
after having 8 hrs. or more of sleep. My Dr. did a sleep study on me along with an e.e.g. and e.k.g. and they found out I was having
seizures in my sleep about 2 hrs. before I would wake up, they are called myoclonic seizures meaning the seizure will happen right after
a person gets up or when they go to sleep.
One sure thing I learned is to stay away from nutra sweet (aspartame) I found out it was triggering seizures for me because it
causes to much electrical activity in the brain. Another thing I used to do all the time is use an electric blanket and I never thought
about the electricity from the blanket triggering seizures but come to find out it did. Today my biggest problem is cell phones. I found
out I was cell phone sensitive which means when a lot of people are using their cell phones at the same time it will trigger a seizure for
me because I'm sensitive to the frequency that's being used. My Dr. found this out after doing an e.e.g. on me and he purposely fired
up his cell phone but I had no idea he was doing it and each time he used his phone the spikes in the e.e.g. went sky high.
Another thing that can sometimes bother a person with epilepsy is a low pressure in the weather. There will be times even 2
days before a rain or snow storm comes my way that I end up having seizures because the barometric pressure is dropping and
in turn that makes the air heavier which causes hormones to change for some people and then the seizure happens.
I think the best thing that I have ever used is cbd oil (med. marijuana) and taking 2 Tablespoons of apple cider vinegar
with mother in it. These 2 things have reduced my seizures to the lowest in my life and I've had seizures for 49 yrs.
Wishing You only the Best of Luck and May God Bless You,
Sue
 
Hey there, Shelley! Welcome!

I would like to say your son is a wonderful hero. I am thankful he was there for you in that time!

Getting a diagnosis is sometimes the hard part...I feel you. There are so many different types of seizures. There are seizure disorders and there is epilepsy. Not all seizures will be epileptic in nature. I had what seemed most like grand mal seizures when I was 9 and I was at public school when this stuff was going on so the doctor needed to know what my teacher was witnessing at school, what my parents noticed at home, and all of that. I would basic info (name, date of birth, parent's names, favorite color, where I was, etc). It took about 6 months - 1 year to get a diagnosis. The pediatricians eventually had the impression it may be seizures, though. They had sent me to the city for an EEG. The results came back abnormal so thus the diagnosis. It wasn't until I was in my freshman year of high school...that very first week of school that I had epilepsy. So, the diagnosis was then listed on as "epilepsy".

However, I have had some issues here and there where I have gotten extreme dizzy spells lately. I was at the computer one night, it was late, and I had forgotten to take my medication. I suddenly became dizzy...hit me like a brick. It was very sudden. The room was spinning around me whether my eyes were open or closed. I got up to step away from the computer and collapsed on the floor, but pulled myself up to lean against the couch. My husband got what I needed to kick everything (low THC/high CBD marijuana buds when it's bad, full spectrum CBD oil if I feel only a little foggy) and I got better within a few minutes and about 90% better within the hour. I remember one time I was on the verge of a seizure and I had gotten home from a long road trip. I was super tired and was getting ready for bed. I started changing out of my jeans and could barely do so - I almost kept falling over and when I tried to walk across the room to get a change, my balance was nearly gone. My husband has said lately he has noticed me sometimes "tense up" real weird when I'm sleeping in bed and it just doesn't seem natural or right. So seizures for you is a possibility, but it could be other things, too - all depends on what they find or don't find.

What I recommend is:

-Get an interview from your son. Write this down in a memo pad or something for your doctor. Doctors will often ask if you have any family members/friends that witness this stuff. It's hard when your judgement is impaired to say everything about how you feel or anything like that. I try to interview my husband before each appointment these days and ask him, "Are you noticing any new symptoms?" and, "What have you noticed with seizures? What does it look like is going on (muscle twitches, fainting, convulsions, etc.)?" It helps the doctor know what's going on at home!

-Make a journal of what you notice. How do you feel before these dizzy spells happen? Did you eat anything you're allergic to before hand? What times of the day does this happen? Does this happen only at a certain time of the month? What makes your symptoms better? What makes them worse? Are you having a hard time sleeping? How long do the dizzy spells and unconsciousness last? Things like this already written in a journal for you to tell the doctor can help. If you have someone to time the dizzy spells you're having and such, that is always useful, too.

-If you have an oximeter or a blood pressure cuff at home - get your readings from time to time and write them down, too, to see if it's anything possibly related to blood flow that you might need to get a referral to a cardiologist for.



Here are a few other thoughts:

-People with POTS (Postural Orthostatic Tachycardia Syndrome) are often times dizzy because the blood doesn't flow well from the legs to the heart and dizzy spells are common with this. It's also common to feel weak, fatigued, lightheadedness, loss of consciousness, rapid heartrate increase, headaches, nausea, shortness of breath, sleeping issues, brain fog, abnormal sweating, chest pain, heart palpitations, etc. They say POTS is indeed rare, but it is also hard to pin point and diagnose. Often diagnosed with a tilt table test. Some people with POTS have said you can test this with an oximeter. You lay down on a bed, stay there 5 minutes to ensure a resting heart rate, get the oximeter ready, put it on your finger, and then stand up. If your heart rate goes above 120 and keeps on rising, POTS is a possibility.

-Many people with epilepsy also have heart problems, too. Sometimes the heart problem is the underlying cause for the epilepsy. It's not an uncommon combination. Also, the signals between your neurons messing up can cause heart palpitations and such, too. A few times when I have had epilepsy, my heart has stopped completely for about a minute or two an then it starts up again. However, I am not diagnosed with any type of heart problem.

-Sometimes people with blood sugar issues have seizure as well, generally from blood sugar falling too rapidly or too low. Although, you mentioned a lot of blood work - I assume they have probably tested for this already in their workup.

-Menstrual cycle seizures, also known as catamenial seizures/epilepsy. Some people have good outcomes with bioidentical progesterone cream at the right times of the month.
 
I have been looking quite a bit at the catamenial epilepsy as i have documented my dizzy spells for the last few months, and they seem to coincide heavily with the week leading up to, and during my period. The seizure i had last week (which may or may not have been the first seizure i ever had) occurred one full week before i started my period. I was on the depo shot from the time i was about 17 until just a few years ago (with breaks in-between when i had my sons). I wonder if this was regulating my hormones to an extent, and suppressing seizure activity? Something to think about for sure. In any case, my first EEG came back normal, Monday will be my first MRI, and then several more various tests throughout the week. And although I know my stress level is insanely high, I really feel like there is something else going on but they cant seem to figure out what yet. Hurry up and wait i guess. Thanks all for the responses, knowledge, and fodder for research....
 
I have been looking quite a bit at the catamenial epilepsy as i have documented my dizzy spells for the last few months, and they seem to coincide heavily with the week leading up to, and during my period. The seizure i had last week (which may or may not have been the first seizure i ever had) occurred one full week before i started my period. I was on the depo shot from the time i was about 17 until just a few years ago (with breaks in-between when i had my sons). I wonder if this was regulating my hormones to an extent, and suppressing seizure activity? Something to think about for sure. In any case, my first EEG came back normal, Monday will be my first MRI, and then several more various tests throughout the week. And although I know my stress level is insanely high, I really feel like there is something else going on but they cant seem to figure out what yet. Hurry up and wait i guess. Thanks all for the responses, knowledge, and fodder for research....

It's possible, some people with catamenial epilepsy that I have seen talking on forums on other websites mentioned that being on birth control helped them. Some women reported no seizures during pregnancy and things like that. Some theorize that a woman that's breastfeeding is less likely to have seizures as well. Totally possible.

For me, a bit before my period and near the end of it are the absolute worst. It used to be like clockwork as a teenager - I'd have my menstrual cycle and then I'd have a seizure. I was never placed on birth control or anything for it and instead an AED. My mom tried getting a progesterone cream and it seemed to help along with the medication. With progesterone cream, though, it helps to take it at the right points of your cycle. I end up taking some roughly a few days before and then near the end as that seems to help me most these days. I recommend a natural, bio-identical one. I'm happy with the one I have, but I forget what it's called.

I feel like for a while when I was told by my neurologist I could be off of my medications, I was fine until I got COVID, which feels like it reset me back to square one and caused a host of problems. Before those 15 months, I already had 2 children and I felt pretty healthy for the most part and almost like I was a lot more balanced because when I'd have menstrual cycles, I didn't feel fuzzy, dizzy, nauseated, or have a seizure - I was fine. After COVID, though, forget it - it's worse than before.

I hope that you get some clear answers soon and that it'll bring some relief. It takes a while to reach a diagnosis of such things these days. :)
 
Hi Shelley,

I used to have catamenial seizures like crazy until I went through my change and then it ended. I would have 2 days of clusters of
seizures before and after my cycle. Then I started to eat nuts and use progesterone cream and that helped me out but the one thing
that helped me the most is the drug Diamox I would take it for 5 days before my cycle and then stop but then they stopped making the
drug. What's going on is the hormones are changing as you mentioned and the estrogen level which causes more excitement is going
up while the progesterone level which helps calm the nerves is going down during this time. If you can go to a natural food store you
may be able to get the cream but it has peanut oil and wild yams in it so if you are allergic to either of these don't use it. I know it
really helped me out a lot. I wish you the best of luck and May God Bless You!

Sue
 
Shelley,

Some people here are very knowledgeable. Ask your doctor questions, but if you are very curious do some reading and don’t exclude medical texts/papers.
 
Matthew, i did get the suggestion to try google scholar from someone here, and it is very helpful to find more in depth and informational medical texts/papers, so that has been great. I am currently reading more about Keppra as i just started that medication, but my next topic will be back to the catemenial research soon! And i have a whole list of questions i have started for my doc, for our next visit, and writing them down is a great piece of advice.
 
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