Am I the only one? Am I all alone?

[MaeDae]

I still have not been diagnosed as having seizures of any kind. They are telling me that its anxiety. Could be? Could be not! I'll admit, I'm depressed and feel hopeless, but I think that's because of lack of support. No where to go and no one to turn to. The feeling of helplessness an isolation could make anyone....? Heck, that would depress anyone, right? I only know what I am experiencing. Since I've never suffered or experienced anxiety before how am I to know. I could be just sitting doing absolutely nothing, thinking about nothing and really relaxed. All of a sudden boom! bang! pow! out of no where, my heart is racing, my stomach starts getting tight and grumpy. I cry or laugh, my muscles get tense and jumpy even my face twitches. Lots of other things happen different times. The things I experience are the same but some times escalated, sometimes suddle. My doctor say's it's anxiety, I've spoken anxiety disorder specialist and she say's its not. Am I alone? I feel like im living on another planet. It's usually around the same time in the morning give or take an hour, and yes sometimes things set me off like: breakfast, coffee, cigarettes, warm water(showering) and people. But most of the time, Im just sitting doing nothing. It has happened during different times of the day, but usually in the morning. I almost always have a constant urge to stretch. Sometimes I yawn for hours continually. Again, am I alone? am I the only one? Anxiety of seizure, I don't want to chose either of them, but I would like to know which one it is. Who ever reads this, Thanks for listening

 

[Nakamova]

My doctor say's it's anxiety, I've spoken anxiety disorder specialist and she say's its not.

Can you have the anxiety specialist write a report for your doctor with her opinion? And can you get a referral to another doctor and/or neurologist? You need a real diagnosis so you can proceed with real treatment. You might want to ask about Restless Leg Syndrome -- the constant urge to stretch, and the sleepiness can be symptoms of RLS. Some studies have suggested that RLS sufferers are at a higher risk of developing panic and generalized anxiety disorder, so it may be playing a role there, too.

RLS can sometimes be caused by an iron deficiency, or by too much caffeine/stimulants, so you might want to review your nutritional intake to see if changes there could help. With the urge to stretch it can actually help to contract the muscles. So if you want to stretch your legs, instead tense/shorten the muscles and hold it for a few minutes. That may provide some relief.

 

[MaeDae]

Thank you Nakamova for listening. I was told by the specialist that a report would be made to my dr. She also advised that I see her again and tell her of the strange things happening. I'm still waiting, will see her Wednesday. I called her 2 weeks ago when I had a (anxiety attack/simple partial aura/seizure) horrible experience driving to work one morning. I was scared to death, I freaked out because I started feeling weird and faintish. So yes, that would be anxiety right? but it was the experience that made me feel that way not that I was having an anxiety attack first, it came from the events prior to? I have considered seeing a different neurologist but I can't do so without a referral from primary care dr. and I want to see one outside of the network so that they dont share notes and the new dr. can perhaps diagnose me without inside influences but she won't do so. It just gets complicated. I have changed to decaf coffee and I only have one to one in a half cups a day. Some days I don't have any. The RLS sounds possible, but it's not just my legs, it feels like my entire body needs to stretch, like taffy. I will ask my dr on Wednesday about the possibility of RLS. Thanks you so very much.

 

[Nakamova]

I know the few times I've had an "aura" like experience while driving it made me very anxious -- so I think it's very reasonable to assume that your anxiety is secondary to the seizure. I hope you can find a way to see a different doctor, it's horrible that we're constrained by our insurance companies in that way.

 

[DadofTwins]

I don't know where you live, but is there another doctor you can see? This one does not seem to be responding to your needs and you have to think of yourself and your health first.

 

[stilldancing_98]

The doctors put my son on an adhd medication and it made him have myoclonic jerks all over his face and body. When I am stressed enough, the dr, perscribes lorazepam. But I think I 'm going to get a anxiety dog. For the both of us. Stress goes down, seizures go down.

 

[MaeDae]

Following Through

The anxiety disorder specialist called me yesterday to check on me. I haven't spoken with her in 2 or 3 weeks. I thought that was nice of her. She felt that I was confused and she was right. I received more information in the mail from insurance co, telling me how to handle stress etc. I replied to them by asking if I had anxiety because they were sending me info. She said that I had at least 7 of the 21 symptoms of anxiety. Not putting a label on it, like stress, panic, social, and trauma anxiety disorder; still, is that a yes or a no? She told me that there are meds and therapy that could possibly help me deal with all of this, so I think she was saying I have anxiety. (I cried like a baby on the phone, she never knew it though. She advised again, that I see my dr and perhaps a psychologist. She gave me a few dr's in my area that would accept my insurance, but advised that I ask my dr. if she would advise someone else. So guys, I'm going to follow thru. When I see my dr. tomorrow I will ask her advise on seeing a psychologist she would recommend. Great, the twinkling lights are dancing. My blood pressure must be up or I'm getting a migraine. I have avoided the forums for a few months in regards to discussing the crap that's been happening. So much has been happening. I thought if I didn't talk about it, it would somehow go away. Go far, far away. I am starting to think that I am going crazy. My boss say's I've been acting bi-polar. I don't know how to take that one. I just let it fall on the floor with the rest of the dirt. But, it might be why people have been avoiding me? Maybe they see things I don't? How scary is that?

I appreciate all the support and help I can get. It makes it easier to deal with, knowing I can come here and get feedback. Right now, you guys are all I have.
Thank you all so very, very much!

 

[Nakamova]

I hope you can get some relief soon. It may be that the psychologist can provide some help with your stress, even if there are underlying seizures.

Don't leap to conclusions about bipolar stuff -- laypeople now just use it as a catch-all phrase for mood swings. And there are degrees of bipolar -- some people are mildly bipolar, some are more seriously affected. Some find help with meds, whereas some don't need them at all. My sister was diagnosed as bipolar, and the docs were eager to medicate her. She tried the drugs, but didn't like them. She's since found that exercise and the occasional talk therapy do the trick for her. (There are some bipolar meds -- Lamictal and Neurontin -- that are also anti-seizure meds, so if you do end up going there, you may see added benefits.)

By the way -- I think most people have 7 out of 21 symptoms of anxiety. We live in an anxious world.

 

[julie wishes]

Just an idea... you can go outside your network for a doctor. Depending on what kind of insurance you have, it workstwo ways. Either you are not covered at all and you pay cash to the visit which might only be $100 to $200, but well worth the money if you get some answers. OR your insurance company covers those doctors at a different rate. For example, inside network your bill is covered at 90%, outside network your bill is covered at 60% and you have to cover the rest.

Maybe this will help.

Otherwise, I'm so sorry to hear of your troubles. It can be extremely frustrating to feel you need help and aren't getting it. And yes of course feeling anxious about what's happening to you is completely reasonable. I feel anxious about my seizures... I don't like them one bit and I dread them coming back and I worry they will. I agree... either diagnosis is sucky... but you need to know so you can move on.

Good luck. Keep fighting. Follow your instincts.

 

[MaeDae]

Feeling "At Ease"

My burden feels lighter because I talked about it and because you all care! I am grateful. I am also anxious to get started with the physchologist as well. I feel that I'm finally on the right path based on your comments. Either way, he/she will be able to determine whats going on right? So to nite when I lay down and pray 1st and cry, my pillow will be soaked with tears of hope, relief and peace, instead of doome and gloome just knowing something soon will be done. Be it therapy or medicines. I don't care, I just want part of my life back!
I will keep you all posted on my visit tomorrow and with the physchologist once I schedule an appointment. One more question? Is it customary to see color shapes with anxiety/seizures? I get color blocks, rectangles and arcs (blue red and yellow) sometimes. Is that some other kind of symptom not related to either anxiety or seizure? I've already seen the eye dr. He says he doesnt know what that is and that he has never heard anyone say they seen it before. I'm not going to worry about it. It's only happened a couple of times, but I will mention it to my dr. tomorrow.

One big HUG for you all!
Thanks again : )
Have a Great day!!!

 

[Nakamova]

Are the shapes visible with your eyes open? Do they obscure other things in your vision? Do they move when your eyes move? They may be migraine or seizure-related -- migraine auras are known for producing all sorts of visual field disturbances.

The link below contains a video showing one of the ways that that kind of aura can appear: (WARNING, it has shimmering/flashing):
http://www.knownjohnson.com/?p=73

 

[stilldancing_98]

Those are a type of seizure that goes deep in the brain. I have a friend who has them. She had probes in the very lowest part of her brain because they could not find anything on the eegs. She also has bad anxiety. She has a cat that that loves her very much. Are you seeing an epileptologist?My son sees colors. My friend sees images, shapes, she thinks it's kind of neet. But it really sounds like to me that you need to write to the epilepsy foundation, they will help you find a good doctor. And get you into a center. You are not the only one. Love teresa

 

[MaeDae]

On My Way!

Well, I saw dr on Wed. We really talked, I mean really talked and I really listened. She reminded me that she tried sending me to see psychiatrist last year and I never followed thru. She said that they can quickly determine if my issues are physical or mental or even a combination. That a pys would be able to prescribe meds that can help until it was decided what the next course of action should be. Finally, Other than the wonderful people in this forum someone is listening to me. I don't care which of the two it maybe, Im just glad the investigation has started. I made the appt to see a pyschiatrist late july. Of course, I will keep you all posted. I am still having the awful mornings, some worse than others but they are still there. My doctor told me to pull over and call 911 or go straight to the er the next time I have one while driving. She gave a prescription for lorazepam to take as needed. I'm hoping that I don't have to take it, but glad that is available if I do. ONE BIG HUG!!!! for you all. THANK YOU! THANK YOU! THANK YOU! I feel better knowing you're there : )

 

[MaeDae]

yes, the shapes are visible with my eyes open. they are rectangular and circles. sometimes they overlap. I see them in lower vision and upper right corner. My neuro dr told me that I was having occular migraines because of the dancing white lights, but he couldn't say why I saw colors and advised me to see eye dr who didn't know why I see them either. I get dark shadows also, there always circular, lighter on the outside and very dark but still see through on the inside.

 

[Cint]

After reading your posts, I'm glad you've found a dr. who listened and sent you to a psychiatrist to determine what is going on in your brain. First, please don't drive if you're having seizures. I cannot believe the dr. just said to pullover instead of NO driving. And do take the Lorazepam if needed. I've had to take it at times. I've also had anxiety + depression and was diagnosed years ago as bi-polar 2. The dr. tried me on many anti-depressants, most of them were tricyclics, but they didn't do a thing for me, so he put me on an SSRI along with an anti-psychotic (which are often used for bi-polar patients). I ended up with Type 1 Diabetes from that medication, so beware of some of those types of medication.

And often times, depression, anxiety accompany epilepsy. Hope you find answers soon.

 

[julie wishes]

Please keep us informed. I hope you can get some answers soon.

 

[ekuadam]

After my first seizure (around the first "anniversary" of it), I started having what I didnt realize were anxiety and panic attacks. I have always been an "anxious" person but it had never inhibited me until then> I couldn't leave my apartment without having a panic attack. Which sucked because it put me off graduating from college by a semester and I lost my internship I had set up, etc... But from my experiences if you just talk to people around you, let them know how you feel and what is going on, it helps. The people I had around were understanding of my condition and wanted to help me. They knew me before all of my attacks started happening and knew that that is not who I was. Talking helps a lot .

 

[MaeDae]

I agree, it would be helpful to talk to those around me, unfortunenately, they're co-workers and don't wont to get into trouble for "aiding me" and not staying on task. Most of them, with the exception of one, are stand-off-ish. I was at work the day I had the aneurysm. So when I say something is wrong, or I don't feel well they all panic and freak out, which freaks me out etc... I usually close my cubby office door and sign on in here. Sometimes I journal (never makes sense when I go back and read it) sometimes, it's over before I can get a grip on what to do next. I also get up and walk around. Those where some tips from counselor. Nothing works, I just have to wait til its over. If it's a real bad "attack", I usually laugh first, get real sick feeling (nausius, like falling and my stomach is trying to come up, if you know what I mean), muscles in arms and thigh twitch (sometimes with face and nose), get pains in stomach, wrist, ankles and toes, start feeling like I got a wet finger stuck in power outlet, then I cry. Sometimes loud and sometimes just tears with no sounds. I have had a co-worker walk in and see me and say " what's wrong with you're eyes, can you hear me? She would go and tell someone else or get some water for me, but usually.....Im by myself. Most of the time I am at home or on my way to work. It seems to happen more at home or in the car. I have been driving, get out of the car when I get to work and then just loose it. I loose it because, I am grateful to have made it to work with out killing somebody or myself while driving. I ask every morning that it happen before I leave, so that I can deal with it at home. So, for the most part, I get my wish. : ) It's starting to happen in the late evenings, about an hour before I go to bed. It's even happened when I was almost asleep. I've waken up because of the falling sensation or jerking. 4 wks until I see the pyschiatrist....yipppeeeee!!! Thank you for the advise. I will talk to maybe two co workers and see if they wouldn't mind? You never know until you ask...right?

HUGS HUGS!!!
thank you!

 

[stilldancing_98]

That just makes me so mad. I've had people tell me to stop it and I just was faking it to get attention;Now that is ignorance!

 

[MaeDae]

Yes, that's how the neurologist makes me feel. He's covered his mouth as to keep from laughing when I describe what I feel. I don't care what my dr. say's I'm not going back to see him. I was taking lyrica which seemed to help. It's not that expensive, but my insurance wanted me to get it though express scripts. If I gotten in thru e-script, it would have saved my $50, but the neoro dr refused to write the prescription for 90 days. I found that out when I was due for a refill and it did not come in mail. So, I refused to play his game. He could have had it sent to his office and I could have picked it up from there if he didnt want me to get a 90day prescription. I refuse to pay double, it doesn't make sense. I don't understand why he couldn't have told me that instead of leading me to believe that he would allow 90 day script. Arogant little *:#%!
I had to ween myself off. My dr is aware of what happened, she said she would speak to him, she thinks its mis-communitating, I know better. He's an arogant little *:#%! Three weeks and counting!