New....trouble breathing/seizures need answers : (

[Georgiagirl88]

Hi Everybody!

I'm new here. Have had spells for at least 5 ys. Told anxiety/panic for yrs. I always knew something was not right and in my heart knew anxiety was not the problem. However...these spells do make you feel anxious for sure and interfere with your life! Finally went to a Pulmonolgist and after study found out I had sleep apnea/significant restless leg. I am on Cpap therapy. I still had these episodes though. From what I have read...this can also be associated with seizures.

I have seen more Drs. than I care to remember! As a woman I have either gotten blown off...told anxiety/need valium???? After going to the neurologist..my EEG was abnormal with left temporal slowing. I am being treated for seizures. The Dr. ..an epileptolgist (2nd opinion) at other followup office said that they really think it's most likely seizures. (complex-partial ? ) These spells are terrible. Very much sounds like seizures along with horrible post ictal exhaustion the next day. Limbs feel so heavy,headache, shallow feeling and slow feeling. a bit I startle awake..feel very shallow..barely breathing. Sometimes it happens as I lay down and I am trying to fall asleep. Then it feels like adrenalin kicks in and heart races. Sometimes get tingles or numb in extremities. Dizzy-headed..I sometimes see a bright light behind my eyes. My eyes start blinking or they are very hard to open. Paralyzed feeling sometimes..difficult to swallow/talk for a few moments. I have had a laughing spell for no reason moments prior to bad spell. I knew it was weird and there was no reason to laugh, but could not stop.I feel like it's hard to focus/think..yet I know what is happening to me.

Sometimes my arm or legs have a jerk. The worst part for me is feeling very shallow as though I am crossing over to the other side. It is horrible and It feels like dying. I just started neurontin 300 mg. twice a day. Right now I am taking only the evening dose because I want to try the a.m. when my husband is home. (Weekend) I am not sure if I have forgotten anything, so many things...it is so scary and it feels like heart related. Heart has been o.k. in past.

I just hate the feeling of not breathing and then chest hurts. I can't run to the Er each time. Unfortunately, when they have checked my oxygen sats in sleep, I didn't have spells. I even tried for a month...but spells are random and sometimes come in clusters. what are your thoughts? Anyone elso with Nocturnal attacks? I also get moments of staring spells and slight checkouts in day..and then I am trying to catch up in conversation..and slight difficulty with memory. Anything would be helpful It just really sucks and I feel unsure. Is there more wrong? Thanks for listening!

Michelle

[Bernard]

Hi Michelle, welcome to the forum.

Sorry to hear about your troubles. Have you considered EEG neurofeedback, yoga or meditation? They can all help reduce anxiety *and* seizure activity.

Your self-described "slight checkouts" sound like absence seizures. My wife completely eliminated her multiple, daily absence seizures over ten years ago with ~5 months of EEG neurofeedback sessions.

[Georgiagirl88]

Hi Bernard,

Thanks for the reply. Since I am new to treatment..I am just on Seizure meds right now. Thanks for the info. about these options though. I only have anxiety in correlation with the seizures themselves. Obviously during/right after and feel crumby the next day. I will ask about the neurofeedback. I feel like I am with good Drs. now, so hopefully will get some relief and on the right track as far as controlling them. Thanks again for the info.
I appreciate it! Have a great day!

Michelle

[Bernard]

Your doctors will likely not know much about EEG neurofeedback. I wrote a lot about it here in the forum though. Follow the link in my signature and you will have some background for talking to your doctors.

[Birdbomb]

Welcome Michelle

Sounds very simular to some of the seizures I have had and the sleep apnea adds to it. The trick is to recognize it and try to remain calm. It helps.

[Georgiagirl88]

Thanks for replying. Do you feel like you are totally not breathing at times? From everything I have read and my neurologist and the epileptologist...I have so many symptoms related to the seizures. I am just trying to gauge how other people feel with breathing. I have read some about breathing info. books etc. I do remain calm, but it is so scary and feels like I am headed to the pearly gates! Then the day after the post exhaustion is awful.There is so much to learn when newly diagnosed. I appreciate the info. and your replying to my note! : )
It does help to know others have similar problems or at least understand. It can be really hard to explain how it feels. I have gone for yrs. being misdiagnosed..very hard!

Thanks again!
Michelle

[Birdbomb]

Those breathing episodes wake me. My head feels heavy, foggy and sometimes I can't see. My chest aches and I'm drenched with sweat. It does feel like dying (at least to me) I came very close to that about 3 years ago when I had surgery to replace my knee. I had gotten quite ill but no one knew what wong with me. It's the low levels of oxygen and high levels of CO2 in the blood. Very awful feeling.

I have a CPAP and use oxygen at night, but there are days when I need oxygen.

You have found a wonderful site. The folks here are very supportive and caring. All you need to do is ask!

[Georgiagirl88]

Thank again so much!


Michelle : )

[stilldancing_98]

Michelle, my ex-husband has the same thing and my brother. So you have the machine right? Have you had the sleep testing yet? My brother also has the seizures to like yours. And my ex believe it or not. My brother got the surgery for his breathing. He is not tired any more but still has the seizures. My ex has to get the apnea surgery now.They both need to get on meds.

[RobinN]

Hi Michelle - I am not familiar with this type of seizure. My daughter did have a seizure during the day once though where she had difficulty breathing. It came and went like a seizure, but she has never had one similar again. I think some of her seizure activity has been brought on by the meds that we have tried. With the first med Tegretol she actually had quite a bit of vision loss that came and went. After being off that drug for a month those side effects never occurred again. With Lamictal she had muscular twitches, that I was told was seizure activity. After a month off of that drug we have never seen that again.

So I suggest that you start a journal/calendar with types of event, things that have changed, such as meds, diet, sleep, emotions, hormones etc. It is much easier to connect the dots when you have this sort of data.

Welcome to CWE

[brain]

Michelle!

Welcome to CWE! Sorry for my
delay in welcoming you, but I
can see that many have already
responded to you - however, I
must also state that sometimes
even seizures can impact your
breathing too.

Being misdiagnosed is very
common place sadly; but keep
pressing on - like many others
have; and have found the answers
and have been treated properly.

(((((((( hugs ))))))))))

[skillefer]

Hi Georgia! Welcome to the forum. I don't have the type of seizure that you do, but you'll find lots of people here who can relate. So welcome, and feel free to ask any questions or vent. And just remember, stress (like worrying about having the seizure) can actually trigger the seizures. So try to find a way to de-stress.

[glitterbug]

I have experienced some of the same symtoms. I have grand mal seizures but I also experience jerking of the limbs and trouble breathing at times. Headaches and memory loss at times are occuring more aswell. I have no idea how to realate this to my epilepsy but I'll mention it the next time I see my neurologist!!

[Joe]

Hi Michelle! Welcome to CWE
I am very new here to - and still looking to understand what I've got - I do not experience the same things as you do, but in my brief, but very comforted, experience this is a friendly place full of caring and helpful people.

It's good to be here

[Georgiagirl88]

Hi everyone again!

THanks so much for replying to my post. It truly helps to hear your ideas/input on things and just to know ya'll have had some of the same similar experiences. I am learning more and more which definitely helps! I am going to call the neurologist today and just ask a few more questions. Also welcome to everyone else that is new here as well!

Many thanks!
Michelle : ))