![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 20 of 20. This is the beginning of the thread.
Posted by Solstice on February 25, 2012, at 23:56:32
My daughter called me a little over an hour ago. She was at a musical at the high school.
After it was over, she got up and was moving fast through the crowd to get to a friend. She said it felt like a hammer tapped her in the middle of her forehead. It wasn't terribly painful, but the sensation of pressure spread on both sides of it, covering her forehead. Here are her additional symptoms:
- pressure in forehead continues
- shaky hands and involuntary head movement, almost jerky
- vision is 'shaky' - 'blurry' - 'wavy'
- unstable gait - felt like she couldn't walk
- a sensation of heat that started at her collar bone and spread up her neck to over her cheekbonesI paged the on-call psychiatrist. He said he thought it could be the lithium. He asked what her last lithium level was. It was .7 - which is not high at all. He suggested going down from 900 to 600 till we can call her psychiatrist on Monday.
Do those all sound like symptoms that are lithium? Or Saphris?
It's probably important to note that my daughter was diagnosed with autonomic dysfunction a few years ago. It, of course, affects many of her autonomic systems. In particular:
- blood pressure
- heart rate
- cardiac electro-conductivity (i.e. she has 700 premature ventricular beats each hour)
- digestion
- internal thermostat (she'll feel hot when everyone else is cold, and vice versa)Her cardiologist prescribed salt tablets and lots of water. Worked like a charm. She takes three Thermotabs in the morning and three at night. I added it up, and this gives her:
- Chloride 861mg
- Sodium 540mg
- Potassium 45mg
Twice a day.As soon as she started taking the thermotabs a few years ago, her blood pressure regulated, her heart rate came down, her PVC's disappeared, and her internal thermostat fluctuated much less.
Theory is, I guess, that the autonomic dysfunction interferes with her body keeping enough sodium on board.
Anyway, I don't know if the autonomic dysfunction and/or salt consumption are contributing to problems with lithium? Her psychiatrist does know about the salt and the autonomic dysfunction.
Any of you who might have ideas about this - her symptoms, please let me know. It sure is unnerving.
And please understand.. although I am certainly interested in what any of you know, even if it might shed a negative light on Saphris or lithium, I would like to specifically NOT have any posts to this thread that are globally anti-med, or that warn of death and/or life-ruination for those that take meds, or posts about how various elements of the meds in question have been used in non-medical situations, or posts that link to videos that promote any of the above lines of thought.
I need support and information from the good people here that is responsive to my concerns - not any hijacking. It feels terrible to have to put his disclaimer each time I start a new thread :-(
Thanks so much.
Solstice
Posted by Raisinb on February 26, 2012, at 0:28:46
In reply to Bad Symptoms - Lithium or Saphris?, posted by Solstice on February 25, 2012, at 23:56:32
Hi Solstice,
Some of that sounds a bit like what I experienced on lithium--heavy, foggy brain. I think dizziness and blurred vision can also be common side effects. I don't have personal experience with saphris.
Posted by SLS on February 26, 2012, at 2:16:11
In reply to Bad Symptoms - Lithium or Saphris?, posted by Solstice on February 25, 2012, at 23:56:32
> My daughter called me a little over an hour ago. She was at a musical at the high school.
>
> After it was over, she got up and was moving fast through the crowd to get to a friend. She said it felt like a hammer tapped her in the middle of her forehead. It wasn't terribly painful, but the sensation of pressure spread on both sides of it, covering her forehead. Here are her additional symptoms:
> - pressure in forehead continues
> - shaky hands and involuntary head movement, almost jerky
> - vision is 'shaky' - 'blurry' - 'wavy'
> - unstable gait - felt like she couldn't walk
> - a sensation of heat that started at her collar bone and spread up her neck to over her cheekbones
>
That doesn't sound like lithium to me.What about EPS dystonia caused by the Saphris? This occurs more often in young people, and begins a few days after beginning treatment.
- Scott
Posted by SLS on February 26, 2012, at 2:30:21
In reply to Bad Symptoms - Lithium or Saphris?, posted by Solstice on February 25, 2012, at 23:56:32
> My daughter called me a little over an hour ago. She was at a musical at the high school.
> >
> > After it was over, she got up and was moving fast through the crowd to get to a friend. She said it felt like a hammer tapped her in the middle of her forehead. It wasn't terribly painful, but the sensation of pressure spread on both sides of it, covering her forehead. Here are her additional symptoms:
> > - pressure in forehead continues
> > - shaky hands and involuntary head movement, almost jerky
> > - vision is 'shaky' - 'blurry' - 'wavy'
> > - unstable gait - felt like she couldn't walk
> > - a sensation of heat that started at her collar bone and spread up her neck to over her cheekbones
> >
>
>
> That doesn't sound like lithium to me.
>
> What about EPS dystonia caused by the Saphris? This occurs more often in young people, and begins a few days after beginning treatment.
I see that lithium can cause dystonia, but this occurs very infrequently. I still think it is the Saphris that is producing dystonia.It is important that you resolve this thing very soon. Please tell us how your daughter is this morning.
- Scott
Posted by Solstice on February 26, 2012, at 8:18:05
In reply to Re: Bad Symptoms - Lithium or Saphris? » Solstice, posted by SLS on February 26, 2012, at 2:30:21
> >
> > That doesn't sound like lithium to me.
> >
> > What about EPS dystonia caused by the Saphris? This occurs more often in young people, and begins a few days after beginning treatment.
>
>
> I see that lithium can cause dystonia, but this occurs very infrequently. I still think it is the Saphris that is producing dystonia.
>
> It is important that you resolve this thing very soon. Please tell us how your daughter is this morning.
>
And now I'm starting to get really worried.Before she went to bed (after midnight), she felt like a lot of the symptoms had resolved. I just went to her room to check on her, and she said her neck feels stiff. She seems to be able to move it, but she said it hurts and feels stiff. It's the back of her neck, from the base of her skull to between her shoulders that she said hurts. So now I'm worried about Neuroleptic Malignant Syndrome, especially because she felt hot (like a fever) from her shoulderblades to above her cheekbones last night. She's wrapped up in blankets right now so I didn't think it made sense to check on that until after she gets up. The symptoms of NMS include 'autonomic instability.' Her thermostat is not terribly great anyway, but last night she really complained about her hands. I felt her hands and one was warm, but the other one had four really cold (like freezing) fingers and one warm finger. The palm of her hand was also cold.
Anyway, I hate when something like this happens on a weekend, because I can't even get the psychiatrist who takes care of her.. I have to deal with one who has never seen her and doesn't have her record.
Solstice
Posted by SLS on February 26, 2012, at 9:17:18
In reply to Re: Bad Symptoms - Lithium or Saphris? » SLS, posted by Solstice on February 26, 2012, at 8:18:05
>
> > >
> > > That doesn't sound like lithium to me.
> > >
> > > What about EPS dystonia caused by the Saphris? This occurs more often in young people, and begins a few days after beginning treatment.
> >
> >
> > I see that lithium can cause dystonia, but this occurs very infrequently. I still think it is the Saphris that is producing dystonia.
> >
> > It is important that you resolve this thing very soon. Please tell us how your daughter is this morning.
> And now I'm starting to get really worried.
>
> Before she went to bed (after midnight), she felt like a lot of the symptoms had resolved. I just went to her room to check on her, and she said her neck feels stiff. She seems to be able to move it, but she said it hurts and feels stiff. It's the back of her neck, from the base of her skull to between her shoulders that she said hurts. So now I'm worried about Neuroleptic Malignant Syndrome,Exactly. That's why I feel that it is urgent to resolve this thing as soon as possible.
> especially because she felt hot (like a fever)
Fever is a symptom of NMS and not lithium toxicity.
> from her shoulderblades to above her cheekbones last night. She's wrapped up in blankets right now so I didn't think it made sense to check on that until after she gets up. The symptoms of NMS include 'autonomic instability.'
Yup. This is another reason why I am somewhat concerned. It might not be that easy to distinguish between NMS and your daughter's dysautonomia.
> Her thermostat is not terribly great anyway, but last night she really complained about her hands. I felt her hands and one was warm, but the other one had four really cold (like freezing) fingers and one warm finger. The palm of her hand was also cold.
You would make a good doctor.
NMS develops very quickly. It might become dangerous within a few days. Now, it should be understood that NMS is relatively rare. The dystonic movements might be EPS dystonia and not a symptom of NMS. However, it is only prudent to act as if NMS is a possible reaction. There are blood tests to help determine this. Perhaps you should discontinue the Saphris until you can see your doctor. Either that, or go to an emergency room and have them check your daughter's WBC and creatine phosphokinase (CPK) levels.
If it were me, I would discontinue the Saphris temporarily.
- Scott
Posted by ed_uk2010 on February 26, 2012, at 9:59:14
In reply to Re: Bad Symptoms - Lithium or Saphris? » Solstice, posted by SLS on February 26, 2012, at 9:17:18
>So now I'm worried about Neuroleptic Malignant Syndrome.
Do you have a thermometer so find out whether she has a fever? People often feel hot or cold while their temp is in fact normal.
Posted by Solstice on February 26, 2012, at 10:01:27
In reply to Re: Bad Symptoms - Lithium or Saphris? » Solstice, posted by SLS on February 26, 2012, at 9:17:18
Thanks for writing back..She's been up and has eaten. She seems better at the moment. Last I looked up the EPS symptoms, and she seems to have quite a few (at least last night). She had:
- Blepharospasm (unusual repetitive blinking) - this symptom started before Saphris - around Latuda/Lithium starting.
- Hand Tremors that included her arms at times
- head shaking
- unsteady gait - almost dyskinesia-like. She could not control her balance, but was not dizzy.
- Apraxia - she had difficulty forming words (she said "I couldn't get the words out right")
- Blurry vision - things looked 'wavy.' Uncertain if this was because of the head-shaking or if it's Oculogyration
- Lots of psychomotor agitation-looking movements. She feels 'pressure' to do it. Popping her jaw, pulling on her fingers, twisting her arms around in various positions.
- Sensation of heat from collar bone up to top of cheek bonesNone of these things were going on before she started Latuda.. then Lithium.. then Saphris
The good news is that she has not had any alterations in mental status, but apparently NMS can escalate over a few days. I just don't know if it can wax and wane, which her symptoms appear to be doing. I'm going to keep my eyes on her all day, and if those symptoms reappear, I'll not give her the Saphris. Thank goodness I'll be able to reach her dr. tomorrow.
Thank you so much, Scott.. and let me know if you think of anything else.
Solstice
Posted by Phillipa on February 26, 2012, at 10:19:22
In reply to Re: Bad Symptoms - Lithium or Saphris? » SLS, posted by Solstice on February 26, 2012, at 10:01:27
Sol I don't know what I'd do in your position. I do know I'd feel I had to do something. Was the latuda the first AAP she was on? So complicated. What can I offer but keep us posted and see if any way you can get her doc on an emergency basis? Phillipa
Posted by Solstice on February 26, 2012, at 10:26:58
In reply to Re: Bad Symptoms - Lithium or Saphris? » Solstice, posted by Phillipa on February 26, 2012, at 10:19:22
> Sol I don't know what I'd do in your position. I do know I'd feel I had to do something. Was the latuda the first AAP she was on?
No. Her first was Abilify - had dramatic bad side effects. Then Geodon - three years of bliss. Then Latuda - fell flat. Now Saphris (with Lithium added halfway through the 4 weeks on Latuda).
Solstice
Posted by Solstice on February 26, 2012, at 14:12:09
In reply to Re: Bad Symptoms - Lithium or Saphris? » Solstice, posted by SLS on February 26, 2012, at 9:17:18
If Saphris is going to work, how long does it generally take to kick in?My daughter's irritability is still strong, although not quite as bad, but her anxiety seems to be high. I just don't know how much of it is the bipolar, and how much of it is the academic pressures that have accumulated due to how much this episode has interfered with her functioning.
The good news is that at the moment, those frightening physical symptoms have subsided.
Solstice
Posted by SLS on February 26, 2012, at 19:45:51
In reply to Saphris - how long to kick in? » SLS, posted by Solstice on February 26, 2012, at 14:12:09
> If Saphris is going to work, how long does it generally take to kick in?
For bipolar mania, my guess is 3 - 7 days. I hope someone else will chime in on this. By comparison, it can take several weeks for an AP to work in schizophrenia.
How long did it take for the Geodon to begin working?
> The good news is that at the moment, those frightening physical symptoms have subsided.
This is good news, indeed.
- Scott
Posted by Phillipa on February 26, 2012, at 20:42:59
In reply to Re: Bad Symptoms - Lithium or Saphris? » Phillipa, posted by Solstice on February 26, 2012, at 10:26:58
I do wish I could wrap my head around this autonomic dysfunction and how it all ties together. I feel helpless. I'm sorry. Phillipa
Posted by Solstice on February 27, 2012, at 0:21:00
In reply to Re: Saphris - how long to kick in? » Solstice, posted by SLS on February 26, 2012, at 19:45:51
> > If Saphris is going to work, how long does it generally take to kick in?
>
> For bipolar mania, my guess is 3 - 7 days. I hope someone else will chime in on this. By comparison, it can take several weeks for an AP to work in schizophrenia.I finally found something on NAMI that said that *some* improvement in *some* patients make be noticed in a few weeks, but that full benefits may not be noticed for 6 - 12 weeks or longer. This info was geared for schizophrenia, but I'm thinking that even if it's faster for bipolar symptoms, it probably isn't too much faster. She just took her fifth dose.
>
> How long did it take for the Geodon to begin working?It seemed like it was right away - like the next day she woke up a different person. Of course, things had been so difficult for so long, it's entirely possible that it was more gradual than that, but that even minor improvements were huge in their impact.
Best of all, she had absolutely zero side effects. Of course, that has made it really hard to get used to having all the trouble we've been having finding another medication that works like Geodon did.
> > The good news is that at the moment, those frightening physical symptoms have subsided.
>
> This is good news, indeed.
Yes it is, and it continues to be relatively okay. I'll try to get her psychiatrist on the phone tomorrow to see what she thinks. I guess that since it might be unrealistic to expect Saphris to be fully effective just yet, as long as she doesn't have those side effects again, we should probably hang in there and give it a chance.Solstice
Posted by SLS on February 27, 2012, at 6:10:55
In reply to Re: Saphris - how long to kick in? » SLS, posted by Solstice on February 27, 2012, at 0:21:00
> > > If Saphris is going to work, how long does it generally take to kick in?
> > For bipolar mania, my guess is 3 - 7 days. I hope someone else will chime in on this. By comparison, it can take several weeks for an AP to work in schizophrenia.
> I finally found something on NAMI that said that *some* improvement in *some* patients make be noticed in a few weeks, but that full benefits may not be noticed for 6 - 12 weeks or longer.I think it may take a few weeks for a neuroleptic AP to work for bipolar I psychotic mania, but probably not so much for bipolar II hypomania. Obviously, I asked my question regarding Geodon so as to corroborate my observations.
> > How long did it take for the Geodon to begin working?
> It seemed like it was right away - like the next day she woke up a different person.Yes. Zyprexa worked over night for me when I became manic. Gosh, it felt so good to be normal. That lasted for a few days. I can still remember how it felt.
One thing to keep in mind is that the common progression of phases in bipolar disorder follows the pattern of:
normal -> mania -> depression -> normal
There is a tendency for people to become depressed immediately after a mania is extinguished. However, this may only be temporary, and require some time for the depression to resolve. There are some people who do not experience a post-manic depression at all.
- Scott
Posted by Phillipa on February 27, 2012, at 18:51:59
In reply to Re: Saphris - how long to kick in? » Solstice, posted by SLS on February 27, 2012, at 6:10:55
Okay forgot why no more geodon did it poop out? Phillipa
Posted by emmanuel98 on February 28, 2012, at 18:55:29
In reply to Re: Bad Symptoms - Lithium or Saphris? » Solstice, posted by SLS on February 26, 2012, at 9:17:18
Stiff neck and fever are symptoms, also, of meningitis -- nothing to do with meds. I would take her directly to the ER.
Posted by emmanuel98 on February 28, 2012, at 18:55:58
In reply to Re: Bad Symptoms - Lithium or Saphris? » Solstice, posted by SLS on February 26, 2012, at 9:17:18
Stiff neck and fever are symptoms, also, of meningitis -- nothing to do with meds. I would take her directly to the ER.
Posted by Phillipa on February 28, 2012, at 20:46:55
In reply to Re: Bad Symptoms - Lithium or Saphris?, posted by emmanuel98 on February 28, 2012, at 18:55:58
I thought same when reading. But I think she felt better after this episode? Phillipa
Posted by b2chica on March 5, 2012, at 15:17:15
In reply to Re: Saphris - how long to kick in? » Solstice, posted by SLS on February 27, 2012, at 6:10:55
i agree with scott about the aps from med.
i had similar feeling with total ataxia diminished gait, severe heat from base of neck up, but then i couldnt talk and my muscles postured, luckily i was already in hospital when i had these side effects. but i did end up continuing medication. i believe it was the Triliptal that did this.be careful.
This is the end of the thread.
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.