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Platy

Confused, trying to understand my experience

16 posts in this topic

Hi everyone, first post to the board. I'm 55 and had a cerebellum stroke in October. Prior to the stroke I had some major medical issues: Chronic migraine headaches (from which I was/am disabled) and an anxiety disorder that was very well managed such that I was off all medications for the 4 months prior to the stroke and my life was not impacted. 

 

The physical recovery from the stroke has been slow and steady. Main residual effects are balance issues and some cognitive impairment that would not be noticed by most. But the emotional aftermath has been a bear. Up and down and up and down. When I say down I mean suicidal. But depression is not my primary symptom, rather it is crushing anxiety. There have been a few times in my life when the anxiety has been this bad. But it's so protracted and intense and unbearable, it does feel unprecedented in my history. 

 

I know there are physiological effects of stroke that can give rise to emotional turmoil. But I have been working very diligently to combat it. I walk briskly every day, do PT, I've made a big effort to reach out to family and friends for support. I joined Emotions Anonymous, attend one of their meetings every night (mostly online) and have a sponsor. I call the crisis line when I need to.                               

 

I'm taking several psychiatric medications in low doses, My psychiatrist seems to favor this approach after a couple of tweaks. I did a two week outpatient therapy program and am now starting individual psychotherapy. I practice meditation and deep breathing, though like the rest, in moderation. I try to do stuff that's fun like playing music.

 

Despite all this there are still some "structural problems". I don't have a regular routine since I don't work. And I live alone and can get isolated. Still, as mentioned above, I'm making an effort to address these issues. I wasn't suffering before the stroke. Now I'm in hell.

 

Here's where my big confusion lies. When I was hospitalized from the stroke they immediately took me off my primary migraine medication (DHE) because it's contraindicated for stroke. It's possible it may even have caused my stroke, so I am not going back. To replace it, They have me on round the clock Norco. This seems to be working -- the migraines are controlled. But there is some concern from my psychiatrist, myself and others that the Norco may be implicated in the crushing anxiety. It may not be solely responsible, but it may be a factor, perhaps a big factor. 

 

So I'm wondering if I should try to detox from the Norco, which would be a big undertaking and I don't know where it would leave me in terms of migraine control. Or is crushing anxiety, which lasts for weeks, gets completely resolved for weeks, then comes back again for weeks, something that could be chalked up to 'anxiety disorder meets stroke recovery'?

 

Any insight appreciated. Thank you.

 

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Hi Platy,

Nice to meet you, even if it is under difficult circumstances.

 

I think a lot of what you are experiencing is more about the stroke than your previous mental history.  I'm not the one to answer your questions about the drugs, other than to say move slowly and work with your psych (but you know that and are already doing it)  What I would say is it's very early in your stroke recovery journey and you probably still have some inflammation in your brain that will be having an effect on brain function.  Both Anxiety and Depression are common after stroke, not just from what you have been through, but also because of the damage to the brain and lots of your emotional control circuitry gets hit as well as your motor control, and cognition.

 

I was a mild migraine sufferer pre-stroke, and I know what the real thing is a significant number of my immediate family are sufferers of the truly debilitating migraines that hit day after day until they are hospitalised.  Most of them are now on the daily prophylactic medication with varying degrees of success.  My migraines seem to have vanished. They were never frequent, but I would usually get one every 6 months or so.  I wouldn't recommend stroke as a cure for migraine, I'd rather deal with a migraine every 6 months than this thing every day. 

 

What I do know is that psych and pain medications have different affects for different people, especially after stroke and you often need to play around until you find a drug combination and dosage that works for you. Also the drug you end up on may not be something that is usually used for what you need, these drugs are more than a bit hit and miss, because our understanding of exactly how the brain functions and how the drugs interact with it is still evolving.

 

I guess I would try weaning off the Norco and using something else, but also recognise that your brain is now different so you may want to try staying drug free for a few weeks and start again once you know where you now stand.  But certainly do not accept crushing Anxiety as normal, no one can live that way for long.

 

Hugs

-Heather

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Very Nice to meet you. I can understand your situation.  I have balance issues from my stroke as well. Over time it has become manageable because my brain has become more tolerant.  As to your statement about Norco , I would definitely NOT take yourself off without having total agreement with ALL doctors. I can understand the idea of having another stroke with medicines but they are now helping you in recovery. If you should have any questions with what you take and your concerns please contact your doctors.

 

I'm not sure if you can drive but check into transportation for seniors/disabilities. I used it for doctor appointments and for needing to get out of the house. When I rode it I was 34 and didn't look like I had a stroke and still don't. To be honest, I still struggle with it. I know I don't look like I had a stroke but it's what is going on in the inside. Good thing here is that many folks here can understand and offer advice or an ear . I look forward to chatting with you.

 

And just know, everything you have been doing is fantastic. I'm glad you have someone to call

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Hi Platy,

 

It is a pleasure to meet you.  I also recently joined this board and it has been a valuable resource as I have been connecting with people with really similar issues involving imbalance, vertigo, nystagmus, and partial hearing loss.

 

If you are having serious emotional issues, I hope that you have a circle of friends and family that you can lean on 24/7 if you are experience severe "downs". There is a member on this board who was diagnosed with a disorder called "Emotional, Cognitive Cerebellum Disorder" which is like onset autism.  I always thought the Cerebellum's function is just motor but it appears that Cerebellum infarct can have other issues.  Just something to discuss with your physicians. 

 

https://cerebellumandataxias.biomedcentral.com/articles/10.1186/s40673-015-0023-1

 

For treatment, I would have your Pain Specialist confer with your Psychiatrist on treatment.  Some medicine may have adverse side effects in combination with another. 

 

Take care.  Hope that you get the support as severe anxiety and depression is awful.

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One other thing.  A pet is also really helpful.  I have a Shiba Inu which looks like a fox.  She keeps me company so I am not in isolation. Pets are a lot more simple than humans.  They will always love you no matter what and can give you support emotionally 

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Hi and welcome to StrokeNet.  The above posts indicate that you're receiving some excellent advice re the meds, as well as the assurance that depression and anxiety are very common after strokes.  The members on this website are very warmhearted people!  Take care and let us know how you're doing.  Hugs

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Thanks all for the thoughtful replies.

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Platy it's very nice to meet you and welcome to this great site. I also had my stroke in the cerebellum...bilateral cerebellar infarction. I also experience exasperating anxiety along with other issues...many psychological issues. My Neurologist told me I needed to find a Psychiatrist that was not afraid to treat me and that is what I did. He is the best Dr. I have had yet and I am so thankful for all he does to help me cope. I like you am on several medications but my doses are considered normal therapeutic doses and not necessarily small doses. It has scared me...I think about all I am taking and it rattles me but he is helping me tremendously. I also experience some depression which is really normal after a stroke if you are having worse depression and not seeing improvement talk to your Psychiatrist (I hope you have one) and also discuss psych-therapy. This something I really got a lot from. BUt I do understand the extremes you are talking about...even with my many medications and that includes anxiety medication daily I still have breakthrough anxiety and a few anxiety attacks. I have read everything about the cerebellum...this area of the brain is affected when a person is schizophrenic, has ADHD, and several other Psychological signs and issues. It is poorly researched and the Doctors all thought it was just smooth movement that it affected but you and I know that can't be true. 10 years ago maybe a little more they started researching the cognitive effects and even psychological effects of the cerebellum possibly not directly in that area but because of how the cerebellum speaks to other parts of the brain. It is connected to many parts of the brain by the Pons. It may be little but scientist are studying how the cerebellum could involve way more than muscle movement...smooth movement where it works the way you need it. This is so long and I am sorry and I didn't put any breaks in...but  I want you to know you are not alone. Also that you may can get further help with these issues. I myself was diagnosed with Cognitive Cerebellar Affective Syndrome by my Neuropsychologist. Many psychological aspects can fall into this category. Again this is "new" to Doctors and mant still do not embrace the concept.  Don't give up, make your doctors aware, and my positive thoughts and hugs to you.

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@Tracy - you got mail.

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Platy, I, too, was left with an anxiety disorder after my stroke in the pons. Interesting,huh? Idon't think that my anxiety is as seere as yours is, but I can understand where you're coming from. For me, anxiety was a bear to deal with, because it could snowball, and get out of control. Then the panic attack, and what felt like terror to me at the time that I was experiencing it, then the tears, because I was so scared! I'd been anxious before, of course, but there was something to be anxious about, like an all-important exam, but, pre-stroke I didn't have this free-floating anxiety, that would hit me suddenly,and without cause. "Generalized Anxiety", I think docs call it. For me, going back on Zoloft,with an anxiety med for back-up was the answer. I was lucky.

 

Are you sure you're still having migraines? I had them pre-stroke, but they went away after my stroke.You may not even need the Norco. One thing I've learned is that there are a gazillion drugs out there, So, if you go off  of it, i'm sure that the docs can find a replacement that doesn't have the side-effects. But, like others have said, let the doc supervise coming off of it  Best, Becky

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Becky I find that fascinating. Something that doesn't give me anxiety is learning and the brain has been my focus for a year and a half now. I wonder why lol. I didn't realize that you and I may be more alike than I realized. It is interesting that your stroke was in the pons and that is the area that the cerebellum connects information to all over the brain. LOL I feel like an amateur brain scientist lol. JK. But this does say something to me and I am curious! :)

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Are you sure you're still having migraines? I had them pre-stroke, but they went away after my stroke.You may not even need the Norco. One thing I've learned is that there are a gazillion drugs out there, So, if you go off  of it, i'm sure that the docs can find a replacement that doesn't have the side-effects. 

Oh yes, I am sure I still have migraines. That is something one can not fail to notice. But it may indeed be that the Norco isn't helping them. As for replacement meds, I've been on dozens, and have seen probably 20 neurologists. I have intractable migraines. I've been through all the first, second and third line preventatives. I wouldn't be on something like Norco if there was a better option. Maybe we'll find something, but It ain't gonna be easy that's for sure.

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I'm sorry. I was hoping that if you have been on meds continuously, there was a chance (I was hoping)  that they'd left without your knowledge because there would be no way to know.  But, that would be the "easy" way if the headaches just left, and nothing about a stroke seems easy. But, just because something isn't easy, doesn't mean it can't be done. I hope you find a solution soon. Becky

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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(((( Platy ))))

 

Meds are so subjective, and with an altered brain chemistry it's even more of a crap-shoot.  I went through six anti-d's before I found a decent fit, and I'm on my 2nd anti-anxiety med.  Until we do find one that works well, and doesn't have a laundry list of nasty side effects, life can certainly be 'interesting.'

 

Susan

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Thank you Tracy, Becky and Susan.

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I know my emotions are superfied now since my stroke was deep midbrain right in the heart of emotion city in the brain. 

And meds can also mess my emotions perceptions and make me  feel things.

My perceptions are different intensities. And my losses are a picture of armegeddon and those sadnesses often bubble to the surface painful or angry.

Yet for me I do not mind some moodiness compared to the antidepressant dull dead numb limbo indifferently painful stuff I was on for the antipain benefit. 

So that is my experience that my emotions are Texan now since stroke because of losses meds my brain area zapped.

Most of all I believe it only safe to change meds as doc tells me because it can increase probs or be deadly. 

You sound like you are keenly aware of yourself and resourceful. You are a survivor. It is hard.isolating. We are each other's comfort.

Take care.

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