Eeg And Neuro Follow-Up = Sad And Confused Becia

[Becia]

Well, I had my follow up with the neurologist about my convulsions this morning, and he kept saying that mine are literally from my body being stressed/taxed when I try to do things, such as sitting up, walking (the little I do), etc. My 48 hour eeg showed no epileptic activity. I was praying that some of the problems i was having would have some sort of treatment that maybe I could reduce a few of these meds I'm on for POTS, and just to be told that, really just upset me. My cardio had hoped the same, that maybe all of the issues I'm having could be tied to epilepsy instead of POTS, and treatment would be so much easier. Instead, nope. All my doctors are at a loss to why this is happening to me.

I asked the cardio guy to possibly up my depression/pots med Paxil, because I'm pretty messed up right now. All i can think of what else can I reduce in my life to reduce the likelyhood of being symptomatic and such. I'm already in a wheelchair because standing up taxes me and my hr to above 200 at times. I can't drive because I pass out sitting up. I am exhausted from not sleeping, although apparently I did get more sleep during the last EEG. The amount of benedryl I take to go to sleep and stay asleep I'm pretty sure is close to overdose levels.

I live in fear. I fear having a "jerking" moment (what the neuro called it, because it's not a true seizure, although I pee all over myself during them, am out for quite a long time, and don't recall them, but I can't call it a seizure according to him...), just trying to leave my room. I fear falling. I fear bruising. I fear pain. I fear my heart rate skyrocketing because I know what happens if it gets too high, and it does EVERY DAY.

Becia's world is a little dark right now. I'm still in line to see Dr. Grubb in Toledo, that's about 9 months out according to the last timeline we had. I guess until then, I don't know what I do.

I know I'll never be normal, but my goodness, can I not catch a break right now?

[corina]

I am so sorry Becia. I wish you had gotten some answers. I know the feeling and frustrations, I truly hope that visiting dr Grubb will help you get your life back on track.

[Katybug]

I'm sorry you're having such a hard time of it. Two thoughts for you...1) there is an olld post on here where someone o osted some info about overuse/chronic use of benedryl causing seizures. You may want to see if you can findd that, and, 2) Since your pots is so severe could the convulsions be a direct result of oxygen deprivation in your brain from cerebral perfusion and can the docs think of anything to test for that and alleviate it if that is part of the puzzle?

[IceLizard]

Sorry to hear how poorly you feel. Maybe this will give you hope. It is an article written by Dr. Grubb differentiating epileptic seizures from convulsive syncope. Having seen him myself, I am confident he will be able to give you some answers.

http://www.medsci.org/v06p0296.htm

[Becia]

Thanks guys for the kind words. They have figured out that I stop breathing when I pass out, but how to go about dealing with that, no one has tried. They just want to make sure that I start breathing again within a minute or so (and there have been times I've needed assistance to do so). As for the benedryl, my cardio thinks that's the best thing for me, even though I get no rest with it, unless my body completely crashes. Add to the mix, the Tramadol makes me itchy, so benedryl gets used extra if I'm having a bad pain time and needing to use it on top of it.

The only "advice" I got was to not stress my body. Well, sitting up shoots my hr to over 120 in the morning. Kinda hard to feel like you're automatically fighting a battle from step one of the day. And when your heart is constantly beating so avast, you might as well be running a marathon. And the pain no one understands, and therefore, doesn't get treated, because it doesn't deal with the heart.

I've cried a good bit today, and now have a migraine. I will hunt those articles down later, thank you for bringing them to my attention.

[gjensen]

Becia, keep your head up.

I know the feeling, but it will get better.

[IceLizard]

Becia, have you tried getting on the cancellation list due to the severity of your problem? Just maybe you can get to see him sooner. Hang in there!

[looneymom]

Hi Becia,

Have you ever tried taking calcium, magnesium, and vitamin D at night before you go to bed? This combination helps my oldest son with sleep. I tried this with Tyler but it had no effect. Another thing that comes to my mind is the sleepy time tea extra strength. I take this and it helps me relax. You will find it in the herbal tea section. Sleep is really important. The only thing that helps Tyler sleep through the night is the Extended Release Clonidine. It's a prescription given by the neurologist. The benadryl could be making you worse. Tyler was able to take it many years ago and it worked. However, since the POTS diagnosis, it winds him up and makes his vocal tic worse. Have you ever had a sleep study done? I would think this be helpful to the right doctor.

I would encourage you to find a new neurologist. Any doctor that tells you it's stress related or due to anxiety does not understand POTS. However, like my son, you have some unsual symptoms that really may not belong to POTS. I feel your frustration but keep looking for answers and doctors. Have you been checked out by an immunologist? Autoimmune and immune related things can cause neurological problems. I would also called Dr. Grubbs office every two weeks to see if your apointment can be moved up. He is a really good doctor and should be able to help you. He collaborates with our cardiologist about Tyler. Just don't get discouraged and take one day at a time.

Rachel

[Poohbear]

I'm so sorry that you are having a rough time. You are not alone--there are many people here who can relate to the frustrations and stress that you are experiencing. Take care of yourself the best you can and keep fighting and looking for answers when you have the energy.

[Becia]

I love sleepy time tea! I drink it or peppermint normally right before bed. My neuro really wants nothing to do with me, or at least that's the impression I get. I don't have seizures in his eyes, but he wants me back in three months for a follow up? For what, to see if I've had these episodes again? Well, had them last night...

I cannot seem to get anyone to prescribe anything for sleeping. I'm pretty much sunk until I can get to Toledo, and that can't come soon enough.

[Freaked]

What you're describing sounds exactly like reflex anoxic seizures. Anyone mentioned those? Worth asking about. http://www.stars.org.uk/patient-info/conditions/ras

[gjensen]

Becia, I hate to come across as recommending anything. I have a hard time myself, but I would really consider finding a new Neurologist. Someone that can work with you up to and after Toledo.

[Becia]

No worries, I don't like this guy much at all. No doubt he's a smart man, but his bedside manner leaves a lot to be desired. Even my friends who've gone to the appointments with me don't think highly of him.

[gjensen]

No worries, I don't like this guy much at all. No doubt he's a smart man, but his bedside manner leaves a lot to be desired. Even my friends who've gone to the appointments with me don't think highly of him.

The first thing a doctor has to be able to do is care. So many of the problems that we and others have with doctors would be solved by that single point. I am of the opinion that if they are unable to do that one thing, then they have no business in the business.

I understand the necessity in separated logic from emotion, but you cannot allow logic to separate you from the patient. This business is full of egos, and the business has no place for egos. All of the education that many have and still not be able to see passed their foreheads.

I would take a doctor that did not know or had no experience with these conditions and cared, over a doctor that knew it all and did not care.

I realize that it is a business and their is a lot of red tape. I also realize that we do not fit a cookie cutter mold. We can be a bit high maintenance, but I do not think any of it is an excuse. If one less patient per day is the solution, so be it. I do not know what the solution is but if there was more concern it would be found.

I apologize for venting. What you are going through is difficult and you should have a doctor willing to help you sort this out. One that did not know and cared would figure it out.

I do not know what the solution is for you, but keep plugging at it and you will get it figured out. Do not dismiss any possibility and stay focused on what your goals are. Do not focus on the problem itself. Just deal with it as it comes, and let it go when it goes. This stuff is tough, but I can tell that you are tough enough to handle it.

I am rooting for you.