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Old 11-27-2007, 09:39 AM   #1
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Anxiety - how bad is it and are you on anything for it?

Hi,
I've had anxiety for years now. I had it for years, it got worse when I went on Topamax and it continues to interfere with my life while I'm on Keppra. My doctor in Los Angeles had me on Lorazapam and Valium (at different times) to control the panic attacks. My heart beats severely, I sweat and I can't breathe. I was told by a psychiatrist, neurologist and my MD in Los Angeles that this was all due to my epilepsy.

After I moved to Florida, the anxiety continued but my neurologist will not prescribe me the same dosage of anti-anxiety meds I was on while I lived in LA (and that I've been on for years). This is causing even more anxiety and insomnia....especially since I am now on Keppra which causes severe anxiety. I am also caring for my mother who has cancer...that adds to my anxiety. I dont' know where to get help as my neuro doesn't seem to fathom the severity of my panic attacks plus he's very anti- certain pharmaceuticals (I was on Vicodin in LA for severe menstrual cramps and he refused to renew my script....instead put me on an anti-inflammatory which has a side effect of seizures and causes me to bleed more). I could deal with the menstrual cramps as they're a few days a month but the Lorazapam is another issue entirely. Today I had to pull over because I had a severe panic attack while driving.

I'm wondering to what degree others suffer these same attacks as me. And how are your doctor(s) about prescribing meds?

Last edited by TopamaxKillsMe; 11-27-2007 at 09:39 AM.

 
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Old 11-28-2007, 12:19 PM   #2
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Re: Anxiety - how bad is it and are you on anything for it?

I'd find a family doc, and just use the neuro for the seizures. It's so hard to have one doc who has things fairly 'stable' (can sympathize with moving from TX and my doc there, and finding a doc here- first one was 'fired' at the first meeting when she told me things about the meds that were absolutely not true.. I sent her things from the internet with my letter to tell her I wouldn't be coming back if my concerns weren't included in my care).

You might also have records sent to you from your doc in LA- explaining the problems you're having. Make copies for any doc you see, and give them as validation for your not being an abuser- that you just got the refills at the proper times, and didn't call for increases in meds.

New docs are going to be weird about scheduled meds, which is sad, since the major accreditation organization emphasizes pain control. Also, benzodiazepines are major triggers for seizures for anyone who's dose is cut too much, whether they are epileptic or not, so for epileptics, it's even a greater risk. His intentions may be good, but I'd get another internal medicine doc/family doc, and leave the neuro to the seizures.

It's so anxiety producing to have a doctor who doesn't listen.....I know that if I have a pile of my pain meds (fibromyalgia) I'm less likely to take them since I know relief is available if i need it. I get the refill every month, but have about 5 months back-stock here, since I don't want to run out....and I take less since I know I can get relief, which reduces stress.

I've got an autonomic nervous system disorder, that I've always felt is due to seizure activity (autonomic seizures are real types of seizures)....I get a fast heart rate, blotchy neck and chest, flushed cheeks, bluish lips and nail beds, arms and legs are ice cold, and I then sleep for hours. Inderal has helped, along with Neurontin. (I don't take Neurontin for seizures- just has the added bonus effects). It's hard to tell between panic and seizures sometimes- I feel horrible when it starts, until I get to the sleep part. I feel like my heart is jumping out of my chest, and my blood pressure can either nosedive, or skyrocket. The problem with autonomic seizures is that the probable location (brainstem) of any seizure focus is too deep for superficial EEG electrodes to pick up. All the doc has to go on is symptoms. I never have any pre-'attack' feelings of panic or anxiety, or am in any anxiety producing situation....it just hits.

Last edited by neurowreck; 11-28-2007 at 03:18 PM. Reason: addition

 
Old 11-29-2007, 01:38 PM   #3
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Re: Anxiety - how bad is it and are you on anything for it?

Thanks NW. I actually had to beg my neuro to up my dosage...it's still less than what I had in LA but eventually, when I have insurance, I will look into seeing a doctor that doesn't have a problem w/ it.

 
Old 11-29-2007, 08:12 PM   #4
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Re: Anxiety - how bad is it and are you on anything for it?

Being without insurance is like being left to the wolves. Medicaid is a joke if you have any sort of disability income at all, since the allowed amount for total care is hardly anything to live on (literally would be on the streets), and the 'deductible' amounts go up horribly. I'm on Medicare now (at 44 years old) from being on disability- I got the replacement policy, so can at least get medical care again- it's so frustrating to want to be doing better, but be limited by a system that keeps a person 'stuck' because of how they dish out help.

I hope you find someone who listens and understands. It makes such a huge difference with a doc.

 
Old 11-30-2007, 03:11 PM   #5
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Re: Anxiety - how bad is it and are you on anything for it?

Hi Top.Kills Me,

You and neuro. both have me wondering now,I am on Lorazepam,
but,my neurologist put me on it and it has helped me tremendously
with social anxiety,but,I do seem to have seizures now every two
weeks instead of once a month,and they do say that the Lorez. is
also for seizures.I wonder though could the increase of my seizures
be from the medicine or the fact that I have always had catamenial
seizures and close to menopause and in my case am sometimes having
my period twice a month.But,whether my period comes every
two weeks or not,my seizures definitely do.I would appreciate anyones
opinion.Why would my neurologist put me on the L. I never even mentioned
to her about my social anxiety.I would appreciate anyones opinions.
Take care and thanks,Sherri

 
Old 12-01-2007, 07:16 AM   #6
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Re: Anxiety - how bad is it and are you on anything for it?

Lorazepam is generally used to stop status epilepticus (convulsive, or non-convulsive) and not as a primary seizure med. I do have it as needed to take when I feel auras, as I was have a lot of back to back seizures.

Are you on any primary seizure medication? Even though you have catamenial epilepsy, and can sort of predict when they'll hit, medication should be able to help control them at least somewhat.....

Every two weeks- Perimenopause would definitely cause hormonal changes making the seizures more easily triggered. But again, can't they figure out some seizure med to help? I'd be more than a little miffed if I didn't have an AED with such predictable seizures.

I doubt the lorazepam is increasing the seizures- I'd bet more on the hormonal changes.
I'm in early perimenopause, and wish it would just be over with ! I'm on blood thinners , so that time of the month is disgusting at once/month....twice would probably leave me needing transfusions !! And I already get too hot (faulty temp regulation with autonomic disorder)....can't wait for those hot flashes- lol....

 
Old 12-01-2007, 03:16 PM   #7
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Re: Anxiety - how bad is it and are you on anything for it?

Hi,

Yes neuro,I am also on tegretol and keppra along with the
lorazepam.I have tried dilantin,lamictal,felbatol,and pheno-
barbital to name a few over the years in all different combos
and nothing has ever worked,come that time of the month
I have seizures no matter what.If I didn't take the meds. I
would probably have many more.I even tried progesterone
bc pills,and the natural prog. cream.
Thanks so much for your thoughts and suggestions, I am
happier though, more then I have ever been in my life taking
this lorazepam,so I do not want to stop.
Take care,Sherri

 
Old 12-01-2007, 03:44 PM   #8
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Re: Anxiety - how bad is it and are you on anything for it?

I'm on a hand full of meds, and lorazepam is one of them. But I have also been entered into the new research study. So now instead of the VNS, I now have the RNS (Responsive NeuroStimulator). So far the RNS has reduced my seizures by 50%. Before that I had the right temporal lobectomy, and the VNS wasn't helping me at all. Also I've been on every med on the market pretty much. If you have any questions about the RNS just let me know.

Sincerely
shawn33

 
Old 12-01-2007, 05:03 PM   #9
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Re: Anxiety - how bad is it and are you on anything for it?

Hi Shawn,

Yes,I would like to know more about the RNS,my doctor is
sending me to the Shands Center down here in Florida in
Jan. for testing and I have been considering the VNS.I have
never heard of the RNS and would appreciate any info. you
can send our way.My seizures are from the temporal lobe,will
it still work for me? I have heard that the VNS can change your
voice especially as it is sending the impulses, does the RNS?
What are some of the differences in the two?
Thanks for any info.in advance.Take care,Sherri

Last edited by Sherri5186; 12-01-2007 at 05:07 PM.

 
Old 12-02-2007, 11:26 AM   #10
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Re: Anxiety - how bad is it and are you on anything for it?

I understand about being on meds, with therapeutic levels of what they can test, and still having seizures (why I'm on disability). It's so frustrating- either worn out from seizures, or having them....very few 'good' days. And when I have good days, I wear myself out getting things done that have been too taxing to do on 'bad' days. I"m also getting used to new diagnoses, and trying to figure out what sensations are due to what, since a lot of them are in the same area- the auras are still pretty distinctive, and the PVCs (skipped heart beats from abnormal rhythym) lead up to the autonomic spells, but the hiatal hernia and reflux cause chest discomfort, as did the pulmonary embolism from putting pressure on my heart (no actual heart problem- just getting too crowded in there). I'm in the middle of another learning what's what time, and it's frustrating !!

 
Old 12-02-2007, 02:14 PM   #11
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Re: Anxiety - how bad is it and are you on anything for it?

Hi Neuro,

Yes,I know exactly how you feel about having so many off days
and trying to get what you need to get done on your good days
to the point it can wear you out,and being soooooo wore out on
so many of the bad days from so many seizures.I cannot remember
if I ever told you,but,I am also on disability due to these intractable
refractory seizures.I had to appeal their decision,but,I just started
receiving it back around April of this year.I miss being around people,
it gets very lonely living alone.
Take care,Sherri

Last edited by Sherri5186; 12-03-2007 at 05:00 AM.

 
Old 12-02-2007, 08:34 PM   #12
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Re: Anxiety - how bad is it and are you on anything for it?

I can definitely relate to how isolating it is to be on disability; I've been off work since April of 2004, and had insurance from work (still helps with the 'balance' that SSD doesn't pay, to keep the 2/3 of my former salary coming monthly). I used to go back to work so fast after seizures- like 4 a.m. the next day to get my stuff caught up from the day before if I'd been shipped out by ambulance; I eventually crashed and burned, and had to take time off. I wasn't planning on anything more than a couple of weeks, but it's been 3 1/2 years now. And, I keep getting more diagnoses, that don't compute with doing what I used to do. Even sorting screws and nails would be hard some days- if I"ve had nocturnal seizures, and wake up feeling 'run over' before I even get out of bed.

I live alone, too- except for my dog, who is clueless about any changes before seizures; my last dog knew before I got out of bed if I was going to drop my blood pressure, and she'd hit the road to save herself !!! I moved back here to help with a family memeber, who up and died, which blew me away. Then I started getting sick (had the same diagnoses- at least the seizures, diabetes, fibromyalgia, and autonomic disfunction) where I used to live, but for some reason, I could still work, and had months of 'good time'... then a few bad days, and back to being ok for a while. I could be productive, and have an identity at work that I was proud of . Now I feel like a useless slug.

I know that my beliefs are that nothing happens without some reason= still trying to figure that one out, though.

Last edited by neurowreck; 12-02-2007 at 08:39 PM. Reason: addition

 
Old 12-03-2007, 04:57 AM   #13
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Re: Anxiety - how bad is it and are you on anything for it?

I have two little dogs(maltese)and one of them knows the sounds
I make when I am about to have a seizure or having an aura,she
comes running and my family(when they have been around)says
she tries to lick me to death during one,my other little dog will
run to the other side of the room and acts really nervous,I have
been told.I hate knowing I scare my little precious ones,I could not
live without them.I was married for 23 years,then my ex left when
I started perimenopause and I started having grandmals along with
the CP,my parents try to tell me that is not why he left,well it sure
was a coincidence then.My two little dogs helped me more than
I can say to get through him leaving,because we were best friends
also.Sorry for rambling,but,my pets were my lifesavers and I love
them to death.
I know they are angels that were sent from heaven,
I only had them 1 year before ex left and that was 6 years ago,
I saved them also,I got them from the humane society,they were
only 10 weeks old they estimated because come to find out they
had been picked up by animal control only 1 mile from my house,
I swear God was sending them my way,they just had to go in and
get a nice hot bath first,LOL!! They are sisters,Mandy and Mindy.
Again,sorry for rambling.Take care,Sherri

Last edited by Sherri5186; 12-03-2007 at 05:09 AM.

 
Old 12-13-2007, 12:19 PM   #14
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Re: Anxiety - how bad is it and are you on anything for it?

My doctor switched me from Lorazapam to Xanax and it makes a major difference on my demeanor. I have tried Xanax before and I never really noticed much of a difference but I think it mixes better w/ the Keppra in my body than the Lorazapam did.

 
Old 12-13-2007, 01:17 PM   #15
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Re: Anxiety - how bad is it and are you on anything for it?

Yeah, my dog is my baby. She's got more toys than I'd ever buy a real kid !!

 
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