anxiety attack/panic attacks

smbren

My mom has Alz and VD.  Has been relatively stable the last 6 months.  Then she got the second Moderna vaccine shot and things just seem to have gone haywire.  coincidence, possible. 

We do see the geri psych on Friday, so only a few more days.  And I have been in touch with her already as well.

But the day after the shot, there were chills, dizzyness, weakness, and such.  This general feeling of not feeling well I think lent to the increased agitation which has been an issue with her. 

We did go to the ER as she expressed problems with breathing.  BP seemed normal.  The 24 hour nurse said to expect about a 45 minute call back, but with her anxiety increasing, we opted for the ER.  EKG, normal.  bloodwork, normal.  urine did show a slight UTI, but only slightly elevated bacteria. So antibiotic was used to treat the UTI. 

Here we are 2 weeks later, new blood and urine shows no bacteria in the urine and no UTI.  But we are still seeing the anxiety issues. 

We weren't sure if this was due to
1)UTI

2) side effects of meds  (risperidone, escitalopram and synthroid (thyroid).  I listed the last as we just learned thryroid could cause many odd symptons she has been presenting with. 

3) side effect of the vaccine.  we learned from discussing with the 24 hour nurse last night (2nd call with them), that it is possible for someone to continue to show symptoms for 1-3 months as their body starts to build the antibodies.  This is the first I've heard of anyone having such longterm effects from the vaccine, but will try to verify with her primary care tomorrow. 

4) possibly, just the advancement of the dementia disease

With her primary care, she is taking a very small dose of Ativan for now, this was to help until the appointment with the dementia expert in a few days time.  This does seem to help, but also seems to wear off to soon or sometimes it barely takes the edge off.  But does seem to help for the most part. 

Today, I attempted to take her to an urgent care walk-in to avoid the ER later.  First was accepting urgent care patients today, only covid tests.  really?  Then drive across town to the other.  They said the doc won't prescribe anything for anxiety like a narcotic/Ativan that she has, and probably will not be able to do much for her.  So we opted to do a wait and see and go to the ER later if necassary. Anxiety attacks gets right to mental issues, and doesn't that equate to urgent care?   

Anyway... This is probably part vent and part waiting to see what someone may tell me about anxiety attacks with someone with dementia.  Something totally new with her and just struggling with how to deal with it.  Can distract her with ANYTHING so the anxiety usually continues to build.  But during this time, her bp and pulse continue to be normal, and she appears to have no duress with breathing even though that is the complaint normally. 

Don't worry, we will go back to the ER if she appears that panicked.  But that brings on more anxiety as well.  A new thing with this is claustrophia.  So the small ER rooms are a problem.  The car ride can be a problem.  But like I did 2 weeks ago, if that seems like the best option, we will head back there. 

Words of advice?  Words of encouragement are welcome too as I feel my strength being stripped away these last couple weeks.   

SonShine Lady

My mother, in memory care, had similar issues after her second Pfizer shot.  I saw her several days prior and she was her (new) usual self. (The reason we had to do MC last September is because Mother refused her medications from my step-father & me.  She began having major hallucinations, delusions, and slipped outside one day.  Then she wouldn't take her BP meds; her blood pressure shot up and she asked to see a Dr. because she thought she was having a heart attack. was taken to Urgent Care one day, and the ER that night.  Not taking her meds put her life at risk, plus the hallucinations/delusions were very bad. After one month at MC, taking her meds regularly, it was like I had my "real" mother back.) I visited the day after the second shot and she was so ill.  She was sitting up but said she felt really ill plus (1) didn't have her dentures in, which is REALLY unusual for her and (2) wasn't wearing any jewelry; she LOVES fashion & her jewelry so I knew something was up.  I asked why she wasn't wearing her dentures & she said they weren't hers but no one would believe her.  I asked about the jewelry and she said, "Because of the virus, we can only wear one watch and one ring; no one can visit me, I can't accept any gifts, I can only eat certain foods because my BP was 200 (it wasn't), etc."  The odd thing is that, prior to this Mother was completely oblivious of the virus, both at home and at MC.  She always asked why I wore a mask when I saw her at home and still asks why (now with a shield) at MC.  She'd try to hug me and I'd (reluctantly) have to move back and remind her we couldn't touch. 

I told her I wanted to pray for her and she put her finger to her lips saying, "Shhh, they'll hear you.  We can't have..." and pointed to the drawer where her Bible is.  I excused myself and went to the nurse's station, told her all the above, which she verified were all untrue, plus they have a chapel onsite with Sunday services.  I asked if she could come and reassure my mother that she could wear jewelry, etc.  The nurse came back to her room with me and said, "Miss I., you can wear all the jewelry you want, eat anything you want...." etc.  I could tell my mother didn't believe her.  Mother also said how frightened she was of the storms. She always enjoyed storms - never afraid and we had just had some average lightning off & on the last couple of days.  I was really scared that she had been terribly affected by the vaccine.  What broke my heart was her saying that day, "And I never even took a flu shot, but I had to or I would have been evicted." My step-father is her health care surrogate and he told the facility NOT to give the flu shot to her as he knew she didn't get them but he did want her to get this one; I know my mother would not have taken this shot voluntarily.  I told her the shot was not mandatory and the reason why it was given.

I visited two days later and was relieved to see Mother wearing her dentures again, but still talking about not being "allowed" to wear jewelry PLUS her hallucinations were back in the form of her "hearing" a relative in another state talking to her.  She hadn't exhibited that behavior since she went to MC.  She told me she had been really sick after getting the shot & told my step-father the shot was a real "bummer" when he visited.  Either at that visit or another one she admired my earrings & got up, looked in her drawer, and pulled out a bracelet.  I was SO glad to see her put that on. 

At my visit with her approx. a week ago, she was having the same delusions she had at home and was stand-offish with me to the point of suspicion.  I was so upset that she was back to how she had been at home.  I discussed my concerns with my step-father after the visits and said this behavior is either from the shot OR she was off her anti-hallucinatory meds.  I mentioned the latter because near the end of January the nurse manager ran over to me when I was leaving to say she really didn't like the anti-hallucinatory med Mother was on & thought she should be on an anti-depressant instead.  I am not my mother's health care surrogate, which they know, so I thought that was an odd conversation.  That sent up a red flag for me and I alerted my step-father.  He called me several days ago to say that the med was not on the February list of meds that he gets/pays for each month.  He contacted the MC Manager, said no one had contacted him re: the med change, he did not ok that and NEVER change her meds without talking to him.  He also called the prescribing Dr. who is his family Dr. as well and got that straightened.  MC Manager said she didn't know anything about it but said they would get the med ordered & she'd be on them the next day.  So the timing of being taken off that med & getting the 2nd shot coincided.  She had been off the med for the entire month of Feb.  I was VERY relieved to hear that, since HOPEFULLY that means the shot hadn't sent her back into the hallucinations/delusions.  She's only been back on the med a few days; step-father says she seemed better at his visit on Saturday.  I look forward to seeing her this week and pray that it was just the meds.

 

smbren

I hope it is coincidence.  What you described is one of the many horror stories about MC/AL/nursing homes that I refuse to have my mother in until it becomes absolutely necassary.  We are working on home changes for them to be with us, but realize at some point that may be unavoidable. During Covid, some of the stories I've heard are just horrendous and the caregivers have had very little access to see what is truly going on.

I do hope that the med change gets your mother back on track!  

I was hopeful the UTI was the problem and was coincidental, but now with the problem still existing, I am still trying to figure out where we stand.   And if the problem is due to long term use of the risperidone, I don't think we can stop it as we can not go back to where we were 7-8 months ago.  This will mean treating the side effects of the risperidone.  And over the last couple months, she has sat there to just stare past the tv more and more, I really hesitate to add more medication, but we can't go back to the agitated, aggressive behavior that we had as we will be back at the hospital then.  But I am with a doctor that also doesn't believe in over prescribing, so I feel together we will work to get the right mix and the right dosage as my goal is quality of life and not having her asleep 20 hours a day.

Jane Smith

Bear in mind that an infection can cause confusion, agitation, and other behavior changes that last after the infection is cleared up. It takes time to get back to baseline. 

It’s also important to get a urine culture to make sure the infection is cleared and the correct antibiotics are used. I’d get the primary care doctor to do this ASAP Monday morning, or go to an urgent care that will do this for you. 

Dementia patients are very susceptible to UTIs and they can be recurrent and hard to clear up (ask me how I know), so don’t take no for an answer on this one.

(Sorry you have only heard horror stories about care facilities. They are not all created equal and  both my mother and another relative are currently receiving excellent care in their respective facilities, one for six years, one for ten.  It’s a level of care I could never provide at home for my mom and I have no complaints related to Covid or anything else.  My grandmothers and other family both also received excellent care at four other facilities, over two decades ago. So maybe just be open to the idea that not all nursing homes/facilities are necessarily bad.)

smbren

Thank you Jane Smith.

We do have the second urine culture back and the infection does appear to be cleared.  But plan to get into see her primary care today as the geri psych isn't until friday.

Sorry, didn't mean to imply all care facilities are bad.  There are many great places out there and I think that most of the people working in them are great.  But some, it is the place.  But even in the good places, there are sometimes 1 or 2 people that shouldn't be in a position of caring.  She is on a waiting list for 2 so she will be near the top of the list when/if it becomes necassary. 

whelmed The thyroid is something I want to discuss more with the primary care too.  The 24 hour nurse brought that up as well.  She has been on syntrhoid as well.  Same dose for years. Not sure if they have checked it though.  But the nurse said that this could be causing much of it as well.

Trust me, like you, not trying to start a vaccine conspiracy.  But I agree, a small change in what is going on with her can affect the anxiety or the agitation that she portrays.  And she can't always describe what it is that is bothering her, so it is sometimes a challenge to get to the root of the problem.  The day after the shot, she was definitely having the typical side effects and that heightened the agitation and is when the anxiety started.  Later that week was the ER visit when we learned of the UTI, so I thought we had the answer and a coincidence with timing, but with the UTI cleared up, and anxiety remaining, I'm not sure. 
I have second guessed the medications before.  The risperidone is for the agitation.  Without this, she was a danger and was actually hospitilized, so we see this as required unless changed for something else that works.  The lexapro/escaplatram, seems to have had a little effect and is what she started first, we did not see any side effects from this.  We have tried things for dementia that caused issues such as memantine and aricept, but these have caused adverse effects causing us to back off.  We haven't been able to try anything else as the doctor wants to get back to baseline before adding anything else so we know what is causing the problem if there are further problems (and I agree, as we can't change too much at once).  
The dehydration is something that is an interesting thought.  With the UTI, told to drink more.   With the anxiety, told to drink more.  She doesn't drink enough through the day and I have been bringing her water more often as I know she isn't doing this on her own.  My wife suggested mixing the clear pedialite in with the water which would be similar to what you are doing, I'll give this a try and mention to the primary care today if we get in there. 

PastorB

DW just had the first Moderna injection with no adverse reaction. She is, however, very given to anxiety/panic attacks and psychotic episodes with her EO AD. When this began, I got her in with a reputable geriatric psychiatrist who prescribed Lexapro for the anxiety. That worked well enough until the hallucinations began and that progressed to paranoia that family members were going to kill her. Seroquel was the next step. First it was 25 mg/day and that worked until it didn't Increased to 25 twice a day, then eight months ago to 25 in the morning and 50 at night. Today we begin 50 twice a day.

In DW's situation, it appears that disease progression is the issue. I am so glad I have an experienced set of docs to rely on. Her psychiatrist has been wonderful about prescribing the minimum doses necessary to control the extremes without so overmedicating my LO that she can't function. 

I think in your situation, smbren, it will be a process of elimination, but I wouldn't be too quick to rule out disease progression as the major factor. 

Part of the acceleration in my LO's case is that I have been hospitalized for recurring infections 7 times in the last 8 months. The schedule disruptions, bringing in an overnight caregiver, and related challenges have made a significant negative impact. A major contributor to why this disease is so horribly difficult is not knowing whether a change is temporary or permanent, the result of progression or a contributing factor, or what. I pray you have reliable people who can help you sort this out for your mom! Vent as much as you need to!

smbren

Saw primary care today.  He definately showed some concern.
blood test scheduled tomorrow to check the thyroid.  will update once i know the results.  

We've increased the escaplatram/lexapro.  Not sure this ever did much, but perhaps it was too low a dose to begin with. 
Increase the ozemoproele/prilosec. She's already higher than the OTC, now it's double the OTC, and twice a day. But the doc believes the stomach issues/nausea is a result of the anxiety, which I do tend to believe, but hard to know for sure.
He did increase the adavin as well.  But did not want to increase the risperidone and want te leave this for the geri psych on friday.  He also thinks she will want to possibly remove the ativan and increase this.  so he's going to let her try and stabilize further.

PastorB agreed, this may be a part of the disease progression.  I am dealing with my father, sister and brother who are stuck in the past or in my brother's case, stuck in denial.  My wife and I have educated ourselves and I do see the possibility of the progression of the disease.  It is so challenging to understand where the change is coming from.  And to your exact point, is it temporary or permanent.  That's a question I've asked many times as even when we have identified things that seem to progress her condition, what I've seen is for the most part even removing the stimulant that caused it usually will not return her back to the same point, thereby causing a permanent increase in the mood/agitaion.  Mood and agitation has been a major problem for us, and risperidone has been what has help signifcantly. 

I do have a good geri psych she sees.  So we have that support.  Her primary care (a personal friend as well) is very accessible to us, so he often can help more immediately.  Over the last 2 years, I have also connected with a number of professionals and other amateur professionals (those like myself who are learning all of this so fast and know quite a bit about the disease).  One thing I really like about her geri psych is she doesn't believe in jumping to medications first, so she does like to prescribe slowly with low doses (unless it is really called for).  As I don't want to see her on so much medication that she is sleeping 20 hours a day.   

smbren

An update. 

Bloodwork is back for the thyroid.  While too early to hear from the doc, this seems pretty clearly to be ok.

TSH W/REFLEX TO FT4 range is 0.40 to 4.50 and hers was 1.38.  Her last test June of last year was similar. So even without hearing from the doctor yet, I don't think it is the thyroid.

Her primary care increased the esitalopram/lexapro to 20mg and the ativan to .50mg from .25 twice daily. He thinks we should increase the risperidone and remove the ativan, but will defer to the geri psych on friday for that change, this is to help manage he panic attacks until then.

This did seem to help all through the day yesterday.  Until bed.  But we used Trazodone to help her sleep last night.  We haven't had to use this until these last couple weeks, but this may become part of the routine soon. 

Not to go into vaccine conspiracy, her primary care doctor did confirm what the nurse stated, that her body could be working with that vaccine for months to build the antibodies.  While the vaccine itself isn't causing the anxiety attacks, if there is a small change in how she is feeling as her body builds the antibodies, it may be triggering her.  He was not surprised by my asking about this in the least. 

We'll see what the geri psych would like to do come Friday. 

Thanks for the input. 

harshedbuzz

smbren wrote:

Today, I attempted to take her to an urgent care walk-in to avoid the ER later.  First was accepting urgent care patients today, only covid tests.  really?  Then drive across town to the other.  They said the doc won't prescribe anything for anxiety like a narcotic/Ativan that she has, and probably will not be able to do much for her.  So we opted to do a wait and see and go to the ER later if necassary. Anxiety attacks gets right to mental issues, and doesn't that equate to urgent care?   

This is standard operating procedure for any urgent care service. If they were known to prescribe opiates and benzos on request, the waiting room would be filled with people who are addicte to drugs and can't access their usual drug of choice. 

Don't worry, we will go back to the ER if she appears that panicked.  But that brings on more anxiety as well.  A new thing with this is claustrophia.  So the small ER rooms are a problem.  The car ride can be a problem.  But like I did 2 weeks ago, if that seems like the best option, we will head back there. 

Are you taking her to a hospital with an actual geriatric psychiatry service? I live in an area that is freakishly well-served medically, and I would have to drive past serval hospitals to get to either one within a 45 minute drive to have my LO seen by someone from such a service. Your Area Agency on Aging can direct you or check the hospital websites in your area to see if this is a listed service.

Words of advice?  Words of encouragement are welcome too as I feel my strength being stripped away these last couple weeks.  

This is so hard to witness with a loved one. I would encourage you to get a geriatric psychiatrist on board for psychoactive medication management. These people are the specialists around managing medication around these sorts of issues. Dad was seen by neurologists from the world class memory center in town, but it was the geriatric psychiatrist who was able to improve his quality of life without sedating him.

HB  

PastorB

Sounds like you have access to all the right resources, smbren. I found that whatever the cause, most changes were not temporary. Whatever new behavior or responses were introduced, they tended to stick around though they might decrease in intensity for a while. Paranoia, heightened anxiety, and hallucinations were the three major categories. DW believed that my family was plotting to kill her or "slaughter" (her word) our pets. She imagined people building skyscrapers in our bedroom and various things she reported the neighbors to be doing. Heightened anxiety had to do with fear that something was going to happen to me, that any mistakes she made would have disastrous consequences.

Good psychiatric care is going to involve prescribing the minimum doses of whatever agent it might be. DW started on a small dose of Lexapro, which helped with the anxiety but one increase was needed after about 6 months. The Seroquel started with 25 mg once a day, but gradually was increased to 50 twice a day.

As a postscript, DW is now in memory care. I have had significant health challenges over the past year and with each hospitalization, DW's decline picked up speed. Far worse, it was increasingly difficult to find home caregivers up to the task of working through her challenges. I found a wonderful memory care facility where they aim to keep medication to a minimum. I didn't make the decision for my convenience, but for DWs safety and to keep her on the lowest possible number and doses of meds.

smbren

Hi PastorB

I so agree, little things that start out that you think may be temporary, even if the doc says may be temporary, seem to always be permanent even if they do lessen to some degree. 

Very similar with what the 3 main issues are, paranoia, heightened anxiety and hallucinations.  I often question whether we should cut back on the medications as some definitlely contribute to the drowsiness all day.  But I also know that we can't really do that as we do keep them at the minimum we can so the agitation that comes from the paranoia doesn't come out to strong.  A lot of her delusions are aimed at my father which makes it very difficult on him, but we get through it together. 

I just messaged the geri psych yesterday as we are using the lorazepam 0.50 mg twice daily now, but with the anxiety attacks I want to know what is the maximum I can give her and sapced out from each other.  Especially for longer car rides.  We went for a 45 minute drive the other day, the ride there was ok, but back was a bit tough.  And we are planning to go out of state for a small get away that they both can use as well as my wife and I.  And I explained that to the doc, so I want to know whether it is safe to give her an additional pill a couple hours into the drive, etc.  And we will do some more longer drives here in our state before our trip so we can decide whether we still do that or not. While she would like to go, looks forward to it, I don't want to cause her the anxiety of the drive if we can't prevent that. 

Best for you and your DW.  We are setting things up so we can bring help into the home when neccasary.  And with 3 other adults (my wife, my dad and myself), I suspect that when that time comes, we may only need someone to come in a few days a week and maybe it will be daily.  And even if it does become 2 shifts, this is still, in our minds, a better option than a MC place.  We will do this as long as we can depending on how things develop.  But I do have her name on the waiting list at a couple places as well, as that day may come where the care she needs may exceed what we can realistically provide even with help coming in to the house.  So if that day comes, her name will hopefully be at the top of the list of our preferred locations when we are ready.