Does any other PSP suffer &/or PSP caretaker notice tremors from mild to whole-body, sometime violent & of long duration?

[JudyJ]

I used to have more pronounced tremors, sometimes whole body, pre-diagnoses til a few months after I was diagnosed last August. I still do have a mile tremor, usually limited to my right hand, but doesn't interfere with my functioning.

During my work-up last summer which led to my PSP diagnosis, it included a 4+ hour Neuropsyche exam. She indicated to me the type of tremors I was exhibiting was A-typical of PSP. I had also heard that from my Neurologist. They were particularly prominent last summer into early fall.

Early last fall my Neuro suggested starting me on a med to be taken at bedtime only to help with the tremor because it was a powerful med and would leave me feeling sedated during the day. Because I was chronically fatigued already, and in the process of a physical move, we agreed to wait til later in the year to revisit that option. When we did toward the end of '12, my tremors had returned to mild, meaning primarily my right (dominate) hand, but for some twitching here, there, anywhere, in my body, but it was manageable, so opted not to start that med. (Sorry, can't remember the name of it.) My tremors just haven't been much of a problem since last fall.

There is more to this event than I will post in this blog; I will create a second blog to fill in the missing pieces.

On Thursday, May 24, of the week, I awoke from a dream in which I was falling down a lot, felt like I was going to projectile vomit, and was in a hard sweat, which is unusual by itself because I don't sweat. I also notice my tremors were back as bad as they had been when they had been bad last summer/fall. Gave myself a few hours to wait to see if I felt better, but didn't, so I called my Neuro's office who told me to go to a specific hospital's E.R. and get admitted. My adult daughter drove me.

After triage, it was a few hours to get on a floor. I promise you when I say I was not anxious, or certainly over anxious, but the tremors continued to pick up in frequency and intensity. My daughter and I were having a casual conversation about current events when my hole body started tremoring/convulsing. Nothing hurt; felt absolutely numb. My legs were moving in a rhythmic pattern like I was running, and I kept pulling my right hand towards my face in a rhythmic manor. The last 30-40 minutes of this was quite violent and I only felt semi-conscious during this time period. Bottom line is I began to have tremors at 9:00 a.m. til 4:00 p.m. when the started me on an Adavan drip that started to calm them down but they didn't go away entirely.

Very fortunately, actually felt blessed, when I did get in the E.R., my male nurse couldn't have been more attentive, compassionate and interested. He said it was "your lucky day" because the E.R. Physician who was to see me was very familiar with PSP because his Mother had just passed away from it. He truly was great. Very calm. Didn't have to explain what PSP was. During a routine neuro test, he asked me to 'look up'. I couldn't and told him so. It was the first time I realized I truly can't voluntarily look up.

He, too, said, the type of tremors he saw me having were A-Typical to PSP. The stabilized me with an Adavan drip, which calmed the tremors down but didn't eliminate them. Then I was admitted for observation. I will post a separate blog about that experience, as well as some knew information I stumbled upon which might be a contributory factor to the whole PSP picture.

But...again...my question to my fellow PSP sufferers and/or their caretakers is this...do you or anyone your caring for have periodic trouble with whole body and/or severe to violent tremors? Anybody? This is a rare enough disease and so little understood, I'm thinking maybe there's a small portion of us who experience this but it goes unreported/gets lost in the shuffle. I hate to think, tho I refuse to dwell, that I may have something else going on in addition to the PSP, or possible an entirely new diagnosis in the immediate future.

I WISH someone in that E.R. either while waiting when my whole body tremors were so obvious and/or when I was in the E.R. could've/would've slapped an EEG on my head to rule in our out seizure activity.

I sure would appreciate (understated) some feedback and responses to this post. Thanks so much in advance.

Fondly,

Judy J

[SharonAB]

John has tremors and 'jolts; to his body. They are intermittent and now occur less - at times when he is frustrated and under high stress. They used to start with a pain near his collarbone on the right side.

As it turned out it was John's first physical symptom well before formal diagnosis of PSP that something was amiss. When the pain began it would extend down to his fingers and feet. Then the tremors would start, It seems to move in waves from the extremities of his body - fingers and toes and then back up again. John would talk about how he felt like he was shaking violently and the pain was intense and severe, particularly on the bottom vertabraes and collarbone. To me it looked like an all over nervous shake - that he could not control.

Mind you this also happened when he out push bike riding and he was found blacked out in the middle of a busy road for a long time so I don't really know what used to happen.

He said when this was happening he initially felt that he was being 'zapped & zoned out' (Never really understood what he meant!). We went through checks for epilepsy and doctors tried to bring on an attack to no avail. Because no one really knew what it was he was diagnosed with epilepy and given medication to take life long. He took it for a couple of days max - we both used to travel a fair bit and his daily medication requirement would put a stop on visiting some parts of Asia ('Western' pharmacy lines are often dubiously confiscated at customs border controls even with doctors letters and prescriptions).

So I went on a mission of self control for John. I contacted the Epilepsy Association. Our home became filled with lots of gentle classical and alternative music sounds that we learnt to go to sleep with. The outside garden was filled with incense and wind chimes. John worked on putting his mind into another world. Over time he 'blanked' his mind out intentionally and switched off to what was happening in todays world. It seems to have helped to reducing the attacks and John still uses the same method now when he is overly frustrated with what his body can not do.

What John has doesn't quite seem to be to the severity you have, but maybe the strategy used for improvement is an option for you to consider?

Regards,

Alana - Western Australia

[SharonAB]

Also - John's tremors are worse when the weather is stormy and the moon was full. (No - I did not believe it at first!!) It was something that John mentioned to the neurologist (his speciality is Huntingtons and Alzheimers). He said he wasn't surprised to hear this and had received the same from many other clients over the years..

Further food for thought.......

Regards,

Alana - Western Australia

[Hidden in reply to SharonAB]

Hi Alana,

Interesting statement about the full moon and stormy weather. While there's a lot of anecdotal evidence (especially with bipolar condition) for symptoms to be worse, it has been rationialised that some of these conditions are sometimes connected to cyclic stimuli (like the SAD syndrome by the seasons or grey sky etc, in the case of bipolar it's thought the extra light from a full moon is a trigger). Also, there may be a build up of the elements that cause the worst part to occur statistically at a certain time (like around the time of a full moon).

On the other hand the term lunatic and loony have been around a long time as being associated with the moon!

Anyway, just more food for thought!

[JudyJ]

What a relief; seriously. I've heard "A-typical" more times than I can count with the type of tremors I have with PSP, up to and including yesterday at the hospital. They are usually not a problem. I have maybe some mild tremor, usually in my right hand, but I can go weeks if not months without a full body-severe breakthrough of tremors. During those last few hours, my legs were in a constant, repetitive motion as if I was riding a bike or running, my hands were either rhythmically slapping my things or hips, my right hand had rubbing my left hand in a circular motion, my heading nodding up and down, or shaking back and forth. Most of this was going on at the same time and wasn't totally involuntarily. I remember eeking out the words "I don't understand what's happening to me." But at it's worth I was only semi-conscious. If there's a next time, I'll try what you suggested for John. My question to you is, does his tremor and of the type we're talking about ever interfere with his PSP diagnosis and create doubt? I've just heard A-typical too many times in too short of a time. Either I'm being oversensitive, downright scared because my tremors tho sporadic had never taken over my whole being as they did on Thursday, especially the last 2 or 3 of 7 hours. I know you're not a doctor and will NOT hold it against you...but do you think there's a possibility they may take my diagnosis in a different direction because of that display of tremors and how A-typical they are? That could be good and it might be not so good. I don't see my Neuro til Thurs. I have another blog or 2 I want to post about events surrounding my visit to the E.R. on the 24th.

Thanks for you quick response; I truly appreciate it.

Judy J

[Hidden]

Hello Judy J

I was wondering what your doctors were actually saying with regards to your condition showing "atypical" in PSP. I'm sure you know that PSP/CBD/MSA (and others) have been termed "Atypical Parkinson's", although they are no longer regarded as "Parkinsons". Your doctors did say your tremors were atypical to PSP, and I assume they knew that PSP itself have about 5 other subtypes. One is called PSP-Parkinson's, and has many features similar to Parkinsons with tremors that usually starts on one side of the body. It has a longer survival that the classic PSP (called RS) we hear about in this forum, and is often termed the "slow" form of PSP.

Now I don't know if your neurologist is diagnosing you with this variant of PSP. Unfortunately, it's very hard for any neurologist to say with certainty that this may be the case. It can only be confired at autopsy (sorry about having to use these terms).

The other problem is that most classical PSP sufferers do NOT have tremors, but there are exceptions to the rule (in a few % of patients).

I'm also wary of medications prescribed for symptoms of PSP because of side effects. (Did you mean Ativan when you said Adavan?) Even Ativan has a rare side effect of causing tremors (even though you had some relief from tremors). In fact, the medical community can be unaware that Ativan makes PSP worse, and this is well documented.

If someone has PSP-Parkinson's they often benefit from the L-Dopa medications because their tremors and movement disorders are related mostly to dopamine problems (they have less of this neurotransmitter chemical because of damage to certain motor nerves). Sadly, for PSP sufferers they, have several types of nerve chemicals (neurotransmitters) that are affected, so giving dopamine medication either doesn't work or only works for a short time (plus possible side effects).

I have a unproven theory about medications that are tolerated reasonably well in patients without PSP (etc) seem to show some awful side effects in PSP patients (actually causing some symptoms that are normally typical of PSPitself). I think it is due to PSP (etc) being a disease that adversly affects many areas of the brain and its complex balance of nerve circuits. The medications used seem to enhance the problems by affecting the already damaged nerves (there is a system of exciting and dampening signals in the barin, and these go haywire in PSP, and I think some medications only enhance this problem).

(My theory may be absolute rubbish, so take it with a pinch of salt).

Hope you find some solution to your tremors, and keep us posted.

Take care and all the best!

[JudyJ in reply to Hidden]

Strelley:

You're probably right about the med; I spelled it the way it sounded, not based on accuracy; what I did know based on what the told me it was sedative in nature and it's purpose was to reduce my tremors, which it did for the violent ones. But when they stopped giving it to me, I still had mild tremors, mainly in my right hand up to my right shoulder, but all over my body as well, just not as violent. And lots of twitching. Maybe it's in the same category.

My Neuro has been extremely reluctant to diagnose me in a sub group of PSP; I had just posted on that recently. He said too many symptoms in the subgroups cross-over into the other groups, and he didn't want to limit me to one, rigid, diagnoses because he doesn't like to do that, plus he wants to keep his mind open for other possibilities.

However, since he's not seen me at my worst with these tremors, maybe it will help with a more defined diagnosis. They started at 9:00 a.m. and escalated to whole-body, violent tremors the last few hours or so at the hospital. Never experienced anything like it.

I will post a blog either today or tomorrow what led up to this event and hospitalization; think it would be interesting and would love to hear feedback from others. It involves more than just the tremors and was an acute situation.

[SharonAB]

Dear Judy,

Thought I would cover a few different areas – so forgive if it is a bit of a ramble but here goes...

Does John's 'extra body movements create doubt on whether he has PSP? Yes. However, the answer keeps getting back to PSP.

With Western Australia's population and the way funding seems to work PSP fits under the umbrella of many organisations here. So I've had the fortune (or misfortune) of speaking to many in the medical fraternity who cover illnesses like Motor Neurone, Cerebral Palsy, Muscular Dystrophy, Parkinson’s, Multiple Sclerosis, Huntington's, Alzheimer’s, Cancer, and Epilepsy are those I can easily recall for starters!

I have repeatedly questioned or been questioned 'are you sure it is only PSP we are looking at? Could it be something else? I have gone round in circles wondering as people have examined John - I have often wondered could he have two or more diseases at the same time. Did one start then another one take over? Who knows? However, for John - it does seem to keep coming back to PSP. Apparently, the changes to his eyes are the main determining factor for diagnosis. At times, I certainly do wish it was something else then I feel I would know more of what to expect (or in reality perhaps not!).

John has found it invaluable that a large number of people have been involved and interested in providing him with the support and wanting to become more knowledge about his symptoms and the disease. He now has developed a trust in people who work with him to enable him to handle his disease. Perhaps that in itself is a good enough reason for you to be 'double-checked' so to speak. If you do this, go with your gut feeling – question your neurologist why is it PSP, and ask could it be something else - and any others who ‘check you out’ too. It does not hurt to ask - Remember whatever you decide to accept or not accept is the right one – because it is for you at the end of the day. The one major mistake I continually make in my personal life is I forget to ‘put on my work hat’. By that, I mean at work and when looking after my daughter I readily ask questions but when it comes to my own welfare, I am reserved. I have to remind myself to ‘put on my work hat!’

In addition, medications can play havoc on everyone. With PSP, much of the time it seems like a guessing game so keep having medications reviewed as much as possible in terms of what side effects they could be causing. It is something to be particularly wary of (and I have nothing concrete to support) but the very smallest dosage changes seemed to affect John in so many different ways far different to what is expected or documented.

As for the term A-typical. It is a term I have never heard it spoken or written down by any of the people who care for John. Perhaps it is because his disease and symptoms are so unusual to them that everything about his condition is A-typical to begin with! I am glad that you will be seeing your neurologist this week and I hope he can offer you some definitive advice to what is happening to your body – PSP related or not. I gather that not knowing is the most worrying (Mind you even after the visit you probably won’t be any closer to getting answers I imagine – such is the nature of neurological diseases!),

John's GP refers to John's illness as PSP-Parkinson's. This is because he noticed John was developing a shuffle in his step many years ago. John himself tells other people he has Parkinson's Plus. When he is asked what the Plus is? He just says plus lots of other things.

As for the sub-type for PSP. I take it that John has PSP-Parkinson's because the Parkinson’s medication seems to work and is now beginning to wear off. When I have asked John's neurologist to confirm this he was not prepared to. He feels there has not been enough research done for each sub-type and John’s illness may cover more than one of the sub-types.

Regards,

Alana Bean – Western Australia

[JudyJ in reply to SharonAB]

Huh. You've been reading my mind

I've not yet been able to get my Neuro to narrow down his diagnosis other than it's PSP. My gut, as you suggest, tells me there is more than one thing going on, yet my get tells me they're somehow all related. See my answer to Strelley's question above.

When I saw my Neuro a month ago, after doing a lot of research, I suggest that perhaps I fell into a sub-group called Multiple System Atrophy, because of all the fainting I do; have at least 3 or 4 events a week. Have been fainting consistently since age 3; I am NOT suggesting I've had PSP or anything like that since that young age.

I've posted much about my fainting events (Nuerally Mediated Hypotention) and how debilitating the condition is unto itself. I almost passed out while driving to get my swallow study done in March; that was the end of my driving days.

So during my April visit, I was very prepared for that appointment via doing a lot of research, and he all but 'poo-pooed' me when it came to giving me a more defined diagnosis. Said all the sub-groups of PSP have too many of the same symptoms and it would be an injustice to stick me in such a rigid sub-group. Said he wants to keep an open mind to other possibilities.

As to your question about why he's so sure it's PSP, it comes down to 2 things; the first is my eye-tracking problems which was confirmed via a 4hour+ neuro-pysche exam I had last July but mainly my involuntary falling backwards episodes which started about 5months before I was diagnosed. My impression from him is that is the ONE symptom that makes him so sure about my PSP.

I will be posting another blog today or tomorrow about my hospitalization and the events leading up to it - involves more than tremors - think we're onto something else that may or may not be related to PSP but is serious and needs to get treated. Actually, it scared me to death; pun intended and pretty literally.

Judy

[anniemay]

Hi Judy, my husband Tom has had 3 instances of violent tremors to the whole of his body, to the extent that he could not connect his hands with his mouth to drink or feed himself. The first time we went to A&E Sunday am but in the panic did not bring his medication so he was without it until his consultant visited him Monday pm! In the meantime, his tremors had become much less violent and after 1 week in hospital he was back to 'normal'. About 6 months later he had a similar episode and cut all his medication as soon as he felt it happening. Within 24 hours the tremors had virtually disappeared. He stopped taking Sinemet from that day, but went back on amantadine until the third episode about 3 months later. Since then he has not experienced violent tremors, just the usual twitches and mild hand tremors. It has been 3 years since the last episode, and I know medication has moved on since then but he still takes nothing except mild painkillers and he is holding up pretty well. The key for us seems to be to keep a positive attitude and do as much as you want to but not to get over tired! Very best wishes to you and your family, Ann

[rainbow33]

My Mother has bad shakey tremour turns still waiting for a diognosis but i a m expecting PSP!!