Seizures? Anybody?

My husband has had seizures with his PSP for 8 years now. He has taken high doses of meds for seizures but the side effects are troubling. I've been wondering if others have the problem and when they started and what has helped. Also is this part of PSP or just the luck of a special few? His seizures were both partial seizures and larger seizures with loss of consciousness (no shaking). They are very brief but cause him distress and the large seizures were dangerous because of falls.

Jill

Cold and Damp Costa Rica

19 Replies

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  • In my wide ranging research on PSP I haven't come across any mention of seizures being an expected symptom. Could be your husband also has some other condition which is causing this?

    Pat

    Warm and sunny Turkey (had to write that but should add it has rained for past three days and sun only came out this morning).

  • If you Google "Seizures in Supranuclear Palsy" you'll find an old article that describes 7 seizure phenomena in 62 patients followed over 9 years. Others have also described this problem despite it being quite rare. It seems even more rare in CBD and MSA. However, co-morbidities and medications need to be assessed in light of any seizures.

    Hope this helps.

    T.

  • Thank you ...I will look it up.

    j.

  • Interesting Strelley - this question does come up often so I asked a Neurological Doctor who is doing a lot of research into PSP/CBD and they said at present (earlier this year) there were no links between seizures and PSP, however, seizures are common in general so it isn't uncommon.

    It doesn't say on the link that they are necessarily part of PSP but they "suggest that PSP patients have seizures more frequently than has been appreciated" ..... I wonder if there is any recent specific research in this area which may be more enlightening

  • Hello Tree_Hugger

    I don't think this area has been well researched because of the limited number of PSP patients that present (at some stage) with "possible seizures". Some carers (on sites like CurePSP and this forum) will describe "seizure" events, but it is difficult to know what type of seizure they may be seeing. It has to happen in front of a neurologist and (and assessed with other tests). Since many neurologist rarely see PSP sufferers, it's no wonder that they themselves do not have a full picture of all the possible neurological symptoms associated with the many damaged brain areas in PSP. For example, out neurologist said he see about one PSP patient (diagnosed) per year, so over his working life he may see only 40 patients (and not on a regular basis). So his " practical experience" of all possible symptom combinations is limited ( in this complex disease, with its many overlaps of other similar conditions. Not to mention the patient's possible co-morbidities that may trigger rarer symptoms in PSP, like seizures).

    All the best

    T.

  • Sorry I also have never heard of seizures with psp.but I know everyone has different experience s symptoms. Some more common some rare. Also maybe worth checking out if rare side effects of any medicine. Rachel x wind battered wet freezing Ireland.

  • Gee...I was all ready to fly away to Ireland (really) to escape but I guess I better wait until the sun comes out.

    j.

  • my husbands brother started having them about th same time as he was diagnosed Parkinsons . Started as little absences, which he didn't realise he was having and then got worse . I have often wondered how much they might be related to the myotonic jerks !

    parkinsons mess affect my husband making him have more sudden switching off jerks chicken and the egg

  • no i haven't heard of seizures with PSP at all

    but he might have the condition anyway//

    no help i am sorry

    jol JIllll in the uK

    AND PSP PERSON

  • My brother had several seizures in the final stages of P.SP. some would last for a few minutes and some much longer , He was put on an anti seizure drug , but I can't remember the name of it . He passed away 2 years ago ...

  • Thank you all for your replies. It sounds like it probably is something special on top of PSP. They seem to be getting worse as he gets worse. Time to up the meds again. Possibly he has had a "silent stroke". His family has PSP, Alzheimers and Parkinson's, and stroke. Poor man. But not a surprise. Thanks again for taking time to reply.

    Jill

    Still windy and cold and damp in subtropical Costa Rica...very sub...

  • zj, my husband had seizures years before he was diagnosed with PSP. In fact, his doctor thought it was the long term use of anti-seizure medication that was causing Parkinsons symptoms but even when he went off the meds his symptoms persisted. looking back on it, I think the whole decade we have been together he has had symptoms of PSP.

    Cold & rainy in the states as well.

  • Brian had several episodes as I called them. He started by jerking violently then his eyes rolled up in his head then he would be violently sick. Gp came up with several reasons but nothing concrete as to what and why. When we saw the neurologist he was not surprised in the least. But will say (touch wood) he has not had an episode since he came off the parkinsons meds. So could it be the dopamine that caused them or the psp.

    Funny I had not thought about the episodes till reading this post. Janexx

  • Thank you for your reply. It seems like it is one big soup and once something happens anything can happen.

    J.

  • Hi Jill, no, S has never had a seizure, that I know about, just a silent stroke 4 years ago. I guess with this blasted disease, any thing goes, the more symptoms the happier it is!!!

    Lots of love

    Heady - from a dark, cold, damp England!!!!! (Yes you are right it's sucks!)

  • Looks like it is bad weather world wide. Another day of cold, damp, high winds in paradise.

    j.

  • No where to run to,

    sigh,

    jill

  • Just a note about the seizures. They can be very very subtle...just a bad feeling that passes in mins. with goosebumps on his skin. At first I thought he was having anxiety attacks. Also I just increased my husband's seizure meds and he is much better all around. His walking had gotten much worse as had his balance and overall mood but after doubling has anti-seizure medication he is dramatically better. So who knows about the connection? And what causes seizures anyway? I just thought I would pass on this observation.

    Jill

  • apart from Johns brother having seizures he also has a nephew who has had it since a toddler and also a niece who started to have hers later in life . different parents .

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