Hey Y’all! My husband has lived with Type1 since he was 5 years old (now 32.) He has a known epilepsy complication of rapid drops into lows causing Grand Mals seizures, but lately, they’ve been increasing in frequency and they are no longer following rapid drops. His most recent seizure last Thursday landed him in the emergency room, loss of drivers license, as well as put on medical leave from work because he was driving at the time. Thankfully no physical harm was done, but we’re now being told that he has to be cleared by neurology before he can drive again, let alone be cleared going back into work. Soonest appointments are looking like mid-late November, and we financially can’t afford for him to be off work that long. What options do we have? Is there anything we can do? Has anyone else experienced this? For reference, he has the omnipod 5, dexcom 6, and this is his fourth seizure in the past three months.
So was it a Low BG seizure or was his BG in range when he had the seizure?
I also agree that Firenza’s question as it will really help clarify the situation - because if the seizure that happened was caused by a low glucose drop then there are ways to manage it, but if its just a straight seizure problem then that will be dealt with in a completely different way.
I’ve experienced many seizures from very rapid dropping sugar levels, and I also had to see a neurologist (I stayed in hospital for a day so they could run various tests) so that they could confirm if it was definitely just a diabetes related issue (in which case better management of sugar levels needs to be taken) or a pure neurological issue (for which medication can be taken).
both are serious and both can be addressed and dealt with, but you have to know the underlying cause first. I don’t think you can get past the license being taken away and that is for his own good and safety (as well as others).
I can understand being a wife to someone with diabetes can cause you stress as well, but just take it one step at a time and I would ask you to please stay as supportive as you can, because this will be a lot for your husband to deal with aswell, but you can get through it by better understanding the root cause and then you can get all the info as to how to help that issue and get some relief from it.
I will also say that sometimes it helps to get a referral from your local general doctor, because they will help get you a sooner appointment with a neurologist because Dr’s generally take other Dr’s sense of urgency with more importance.
I would also be interested in his BG levels during the last seizure that put him in the hospital. Has he been put on any anti-seizure medications at this time? Those take a while to become fully functional in the body once they are being taken, and switching between medications can be difficult and take 6-8 weeks while you are taking both medications.
I have been T1 for 41 years and have had at least two seizures in six years. Neither one was diabetes related. I am still on medication for the seizures but I had to switch medications from the “industry standard” Keppra to a different medication. I did not like the Keppra at all and it made me very moody which wasn’t good for me or my family.
I wish the best for you and your family in this time of need.
I am an epileptic diabetic. Feel free to ask me anything. Sorry for the late reply.
If he feels ready, I would get him a bartending job to help get you all by until this is sorted out.
He’s gonna loose his license for 6 months and there’s no way out of that.
When he gets his license back, its gonna be very risky for you two to be relying on a job that requires him to drive because he could have another seizure at any time and loose his license at the drop of a hat. This is a tricky, serious situation for you. Driving is one of the most common professions that exists. A lot of people drive for a living. I have seen diabetic truck drivers refuse to go on insulin because they were supporting a young child as an only parent and were terrified of loosing their professional license. Very sad situation. I have seen the same situation arise for epileptics. In most states, epilepsy and type 1 diabetes are the primary two medical conditions that result in someone loosing a drivers license, and their source of their income. That’s a bad situation.
Four seizures is a lot. The thing about seizures is that they will increase in frequency and magnitude until something really catastrophic happens. Its rare, but you can die from a seizure. When someone has a seizure that lasts a long time, and they can’t pull you out of it, they call it ‘status epilepticus.’ That’s how people die. Having a seizure also makes it more likely that you will have more seizures in the future because those bad brain pathways get lubed up and bad electrical activity will happen there, more and more frequently. Seizures beget seizures, if that makes sense.
The Doc might put him on a medication called keppra to stop the seizures, but he will need to be 6 months seizure free before they determine that the medication is working and return his license. Driving is now an unstable career choice for him. That will never change. We can talk about the details of why, but it would help to know what State you live in so I can check their specific regulations.
I’m sorry this is happening to you. Its a tough situation. But, I’ve been through it, myself. Life still works out somehow. I, personally, had a much tougher time with the epilepsy diagnosis than the diabetes diagnosis because it felt like it took a lot more things away from me.
The best thing that he can do NOW is sleep. He needs to have a really stable, regular sleeping schedule. He needs to get as much sleep as he requires - whatever that is. If he feels like he needs to sleep ten hours per day, then he should sleep ten hours per day. That will help prevent more seizures in the meantime…until he sees the Doc. But, there are no guarantees at this point and he SHOULD NOT drive. That could cost him his life.
He should not drink alcohol. Alcohol increases the risk of seizures a lot - partially because it hurts your ability to sleep well. He should be careful taking baths and showers because he could drown. If I’m nervous about seizures, I lay down in the shower and that makes it less likely that I will drown or fall and break my head open. Halloween is coming - NO haunted houses with flashing lights. Halloween and Fourth of July are dangerous times for epileptics. He should not perform work with power tools or a deep fryer. He needs to be careful cooking, for now. Sometimes people get an epilepsy diagnosis because they have a seizure working at McDonalds, pass out, and deep fry their hands, resulting in amputation.
Your job is to keep him safe until this all gets figured out. He needs time to live with this diagnosis and understand what dangers exist. He needs to figure out what he can and cannot do. He will become more capable over time. He and his team will figure things out over time.
P.S. When I got my diagnosis, I was trying to be a paramedic. All the things that epileptics AREN’T supposed to do - work/sleep irregular hours, drive in a crisis situation, drink, and be around flashing lights are what paramedics do for a living.
It was never gonna work and I am really thankful that I got a diagnosis before me or someone else got hurt. It was really difficult to get that diagnosis (as a diabetic) because people kept thinking it was a blood sugar related seizure, or (more frequently) not believing me when I reported a ‘non-blood sugar related’ seizure to my endo.
To get a proper diagnosis of epilepsy, the seizure really needs to be witnessed by a healthcare professional, so its harder than it sounds to get diagnosed. People most commonly have seizures in the early morning or late at night when there is no one lese around. Finally, I had a late night seizure witnessed by a student studying for the priesthood, a nurse, and a responding paramedic. Then they believed that the seizures existed. But, by then it was a really serious Grand Mal that took me out of commission for about 6 weeks. It was a terrible seizure and if I was alone, I might have died. Diagnosis is a gift. Many people don’t get a diagnosis before something catastrophic happens to them. It’s a serious diagnosis and it will require some major restructuring of your life in the short term, but you wont know much until you get additional info from a Doc.
I think this used to be an idea that floated around, but I don’t think that they have ever found firm connection between epileptic seizures and diabetic seizures, or epileptic seizures and BG control. They are really two independent chronic illnesses that require treatment independent of one another.
Seizures that result from hypoglycemia result in death…without intervention.
Seizures that result from epilepsy do not kill you…most of the time.
That’s how you can tell the difference. Epileptic seizures tend to just kinda resolve on their own. It can be hard to tell the difference on the street. But, they can see things using an EEG. Epileptics will show goofy brain activity on an EEG. Diabetics are three times more likely to have epilepsy than the population at large. Maybe some of us get some minor brain damage from diabetic events, like the events surrounding diagnosis. Its impossible to say, for sure.
Your personal experience with epilepsy and T1D, especially as it relates to career choice and required capabilities, is helpful in this thread. I knew facets of your story and reality but these present comments made it sink in. Thanks for your writing effort!
Thanks for saying so, Terry. I think its helpful for ME to put it in perspective too.
I don’t know what state you live in, but if you husband is unable to work, you might start with the Personnel Department of his company and see if he is eligible for FMLA – Family Medical Leave Act. Although he will be unpaid, FMLA will protect his employment with the company and, more importantly, will protect his insurance rights with the company. When talking to Personnel, you also might investigate whether he is eligible for unemployment while he is off on FMLA. (I really do not know the answer to that question!)
Driving probably is out, but if your husband is familiar with the company, can he transfer into an office/ supervisor/ controller/ manager position within the company that will offer him continued employment without having to drive? I worked for 30 years teaching at a Technical College, and I had a student once who, because of back issues, no longer could drive truck. He was a good employee, so the company worked with him to see what else he could do for the company. He was back at College (at age 45) to get trained in logistics so he could transfer to that department of the company. The company even supported part of his tuition for his re-education.
The is not the end; it simply is a turning point in your lives. As an educator, I would advise you that once you have talked to Personnel, try some of the social agencies in your town to see if you qualify for help with the bills. And though it may SEEM like you cannot afford it, you might want to talk to a Counselor at an area Technical or state college about training for a new career path. You are never too old to learn, and this may be his chance to work in a field that always has interested him, keeping in mind the seizures and the diabetes.
You both will be fine, and you are on the right path with taking care of your husband’s health and getting him into his doctor. I agree that IF he can get another doctor’s referral, that may speed things up a bit. Until then, you may want to take the proactive steps mentioned above as you map out the next chapter in your life.
Good luck and God bless you both.
Maybe this all helps explain why I was becoming increasingly infuriated with the State accidentally suspending my drivers license year after year. There were years when I was doing SO much to accommodate their inability to send mail or operate their computer system or process DMV paperwork (I sometimes had to ride my bike 90 min, in order to take the bus 2 hours, one way, in order to hand deliver the diabetic medical form to The Dept. of Public Safety - just to witness them process it in real time so I could verify that they didn’t loose it again). BTW, the Dept. of Public Safety put up NO fight when discrimination legislation came to the Senate. A Senator asked me to speak with them and preliminarily clean up any “trouble,” before they were asked to give formal input on legislation. They sided with me. They knew. They and I had a relationship by then and they knew better. A House member told me where the unofficial difficulties lay in the Senate. When I heard what it was - a drunk, country cop in the Senate who had been kicked out for bad behavior and declared himself the ONE true authority about diabetics and if they were physically able to operate vehicles (not a Doctor, not the dept. of public safety, not paramedics, not the DMVs medical court - just that one drunk, Senator was the stopping point in the Senate). I couldn’t believe it. He was dealt with rapidly and without remorse…once I was alerted to his existence and was able to provide some advise on how he ought to be handled.
At some point, the bureaucratic difficulties associated with processing the paperwork far outweighed the medical difficulties. That’s when I snapped and vowed that I would stop at nothing to fix their computer system. I would dedicate every moment and my entire being to preventing them from accidentally, illegally suspending my drivers license ever again. They didn’t even know about the epilepsy - that was JUST the one diabetes form. It was beyond my ability to comprehend what fate awaited me if I had to submit TWO medical forms annually. Sometimes it took a full three months of effort to get one medical form processed. During initial covid lockdown, it was my only priority. I submitted the diabetes form ten times before it was finally processed (with no suspension). Most of the failures were on the clinic side. By the end, I would tape the form to gifts in an effort to help them not loose it. That was, in the end, the strategy that preserved my ability to drive during covid…until the legislation went through. At least, now I know everything about state medical forms for driving privilege’s …everything. I know that I can get a medical form processed no matter what bureaucratic obstacles exist and I just worry about the medical ones. If I ever needed to take epilepsy medications, I can make a sound medical decision without being so afraid of all the bureaucratic and institutional obstacles that result from that. I’ve seen everything. I’ve seen the system at its very worst. I think there has been progress. You all were invaluable in that effort, so thank you.
Remember these weird diabetic valentines that I used to send them all at the start of session? Some of these were weird. I made 'em in Paint. I think my desperation and insanity really shines through in the art.
@GL1 , it’s worth a shot to ask if you have any disability insurance. Barley anyone does, but I think that would cover you in this case. I send my love from Minnesota. Hang in there. There are options available, even when things seem bleak. https://www.youtube.com/watch?v=8MrR9AUMVR4
It is very important to establish your BG during seizures. In the early 80’s I purchased a new meter just on the market, one that you did not have to wash off the strip (like the early ames meter). Over a period of a couple months it increasingly read my BG higher, and being on MDI (before pumps were available) I kept correcting. I had two seizures, and occasional difficulty walking. I felt lousy - not to mention the post seizure. I finally broke down and ate 3 candy bars, and immediately felt better. Working at the Univ. Med school I was able to visit the diabetes care unit, and get my BG measured on their meters - I was at 50. They then compared my meter to theirs and mine read 200 mg/dl higher - I was over dosing. Some of my BG readings went down to 32. Fortunately I was walking the 1 mile to and from home at the time.
Low BG can increase neural excitability - allowing random firing of neurons. If this is the case, then the answer is simple, implementation is difficult, takes time, and patience.
Quarterly visits are appropriate for a person with stable diabetes with few episodes of hypo and no other issues, not for your husband.
I have very good BG control and no other issues. If I had ONE severe hype reaction, and it wasn’t obvious what caused it, my PCP would want me in his office ASAP. My endo would want to see me in two weeks or sooner. They’d be looking at my data and my therapy and questioning me. If they couldn’t identify the cause, they’d make adjustments to make the therapy less dangerous. They’d run other tests to eliminate something besides diabetes as the problem. Being older, they’d also assess my basic competency. Their assistants would review my use of equipment and my diet.
Four episodes of hypo-inducing seizures should have been enough for his doctors to increase their levels of attention, his frequency of visits, and his level of care.
It doesn’t sound like the doctors he’s been seeing are working for him. It doesn’t matter why. Considering how medically fragile he’s become, if it were my spouse, my first priority would be finding a better group of doctors ASAP.
He needs a neurologist and an endocrinologist who can work as part of his team, not detached specialists.
An off the wall idea for if you can’t get emergency referrals from your PCP. Your medical insurer has a vested interest in reducing cost of care. Life threatening emergencies are expensive. Some have hotlines to direct people to "in network " caregivers, and to specialists.
Since he’s been dealing with chronic illnesses for so long, he may be resistant to anyone telling him what to do. I know that I was until I was scared into accepting help. So while I have suggestions on how he can try to cope with this on his own, I know that they are more likely to be accepted by him if he can reach them as his own answers and conclusions to reasonable questions of “what can you do?”
“how can I help?”
The highest priority is preventing rapid drops. Reducing what causes them is more important than maintaining low average BG level or TIR. Eliminating TBR is the easiest way to do that, and can be done by less aggressively treating highs.
Moderately high BG is less dangerous than low BG.
A higher average glucose as a temporary goal and a higher low target level would provide a larger buffer and more time to react. Partial corrections and waiting between them is safer than using calculated corrections.
After 25 years with T1D 25 years hypo unawareness isn’t unusual, and it isn’t a sudden loss until sensitivity drops below a critical level. If that has happened, what is perceived as a rapid drop might be a slower drop only noticed after it drops very low.
If that isn’t the case something else is causing the drops. When we do something for a long time, some things we take for granted change or become unreliable without our noticing.
When I can’t figure out what is wrong, I go back to basics.
I don’t assume that the things I eat and do haven’t changed “just enough” to reach a breaking point and cause a problem. (A simple dietary substitution maintained for 6 months gave me most of the issues of beri-beri).
I record everything I put in my mouth carefully. I check the content labels. I don’t estimate it from experience, or eyeball it, I measure it with a scale and log it with the time.
I no longer assume that diabetes equipment is working right.
I don’t assume that G6 sensors are trustworthy without fingersticks. They aren’t. A G6 can be “in spec” and read 20 mg/dL high throughout the control range. That will screw up bolus calculation and cause overdoses. My only hypo in 6 months was from a bad sensor. My last sensor suddenly started reading 40 mg/dL off after 5 days of use. I’ve had ones read high and other low by so much that I can’t trust them.
Without G6 calibrations and spot checks my looped pump can make me go out of range. Once out of range the correction factor isn’t reliable. If the CGM is reading lower when I’m high, I’d undercorrect and could stay high or go higher. If it’s reading higher and I’m low, I’d over correct and go lower.
So I use a fingerstick meter to check every sensor for high and low accuracy when stable (when waking and at the peak following a well balanced meal) at least once. I do a BGM test every time the G6 says I’ve dropped below 80mg/dL and every time I feel hypo or “off”.
I go back to basics using a BGM including skin prep drying technique. I check the BGM using control solution for every new vial and do BGM tests before and after a fasting BG lab test.
Hopefully one of those ideas will help. Here’s some things worth paying attention to
Rapid drops are most likely to happen after miscalculating insulin boluses for meals, bolusing too early, eating carb-heavy meals and snacks, during/after physically or mentally strenuous work and when insufficient dietary fiber causes irregularity.
A good alert system will keep you aware of BG before you get in trouble,
If you have Android phones, the XDrip+ app has much better alert and alarm capability than the dexcom apps. I have alerts set at 10 mg/dL intervals below 100 mg,dL and above 160 and for fasr rises and falls.
When I start a new sensor or have something going with my glucose that Is unusual or unwanted I enable them all. That keeps me alert, tells me to look at the graph and arrow to see what’s happening and think about what caused it. Once things get back to “normal”, I disable most of the high alerts and some of the low alerts.