Seizures with CBD

Hello all

This morning Mum had some sort of fit and we have been in A&E since 7.30am.

No one has heard of CBD, no shock. They do think it is a seizure though at present and not bleed in brain. I honestly thought she had died in my arms as was terrifying.

Has anyone got experience with seizures and these conditions?

They think she has aspirated blood from biting her tongue and mouth so not allowed anything by mouth.

There are no beds in hospital as full capacity so stuck on a god awful trolley in A&E. Just given her some morphine so she is actually sleeping at moment.

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Oh, Spiralsparkle, I hope you get a bed quickly.

Thinking of you both.

Wishing you best of luck.

Liz and Kevin

xx

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Oh god, spiral I'm so sorry to hear this!!

My heart goes out to you both!

No other advice I'm sorry but sending you big hugs and much love ❤️ x

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Well I have my own seizures but have had since I was 21.....now that I;m almost 56 i know mine are epilepsy ....So what to do if she has a nother. I know that there are dogs who are trained to sense when a seizure is going to happen...they can warn others and maybe the patient to lay on side so they don't fall and bang head. I have auras which warn me ....though the time between aura a nd seizure has been narrowing....old age.....

two things we used to do with our students (though I had maybe two) is always make sure of their whereabouts...one little girl had a transport belt that we needed to hold on to while walking so in case she fell, we were already holding on to her.....If your mom is mobile she may need to wear a helmet from now on ....and definitely not drive or really go anywhere without assistance.

CBD does not necessarily go hand in hand with Seizure disorder. They have found that Alzheimers patients may experience a higher percentage of seizures....whereas CBD not as much.....

it's amazing the amt of ppl who have one szr in their life but until a year has gone by, the doctors are on board with that patient making sure szrs are not still present. And if they are there are lots of different meds to help control them....

I hope I shined a little light on something that affects alot of people...In the US 150,000 People will be diagnosed with epilepsy every year....

Good luck to you and your mother, I do hope it was a one time thing

AVB

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So sorry to hear about your mum, Spiralsparkle!

My husband has CBD but hasn't experienced any seizures.

How awful, that your dear mum has to wait on a bed in the hospital corridor. I just can't imagine how it must be for you all.

Hope she gets a bed soon!

Denise X

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I'm so sorry to hear this sparklekitty my mum hasn't had seizures with CBD although she had had in her words 'fogs' I'm not sure what these are and with everything else going on its not on the top of my radar list at the moment. It could I suppose be episodes of semi conscious periods and maybe a sort if seizure although she hasn't bitten her tongue. Hoping you get seen soon thinking of you xx

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How awful! I'm very sorry for you and your mother - what a terrifying and exhausting ordeal. I don't recall any details, but someone here asked not long ago about whether seizures were a feature of CBD, so I think you are not alone in this.

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Mum finally got a bed at 8pm after being there since 7.30am. She was in agony.

None the wiser really but Dr's think was seizure and want to monitor her. Do a ct scan of head and get her neurologist to see her. It took days last year for these things to happen when she was admitted. She hates the place after last year and told me never to take her there again!

I left her sleeping at 9.30 and hope I can get some too as totally done in.

Sometimes I try to kid myself that all will be OK but then always waiting for something to occur and on high alert.

God these conditions are so evil. Mum. Said today I've had enough of all this crap now I want it to be over.

Hugs to all

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I am so very sorry your mum is going through this. CBD is awful, hope they can come to somewhat of a conclusion.

Here is a tip, carry some literature on CBD wherever you go, because as you know, no one knows about CBD...sending you love and prayers for mum

hugs

Paola

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Bless you both Spiral

Please keep us posted

Much love x

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Hi my mum has CBD and also had a seizure just before Xmas, it was the first time and hadn't had one since. It's come to light that she was feeling very anxious at the time as she was worrying about things and they've said that anxiety can contribute to it. I'm not sure but it was frightening at the time, and it knocked her for six and was poorly for a few weeks after this x

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Hi thanks for reply.

They think it was a temperature that caused it but she hadn't had a temperature but has since being in and it is looking like she has a urine infection.

I've never been so terrified when it happened. I really thought she had left us.

Did your mum have to go to hospital?

I'm hoping she will be out today but had to stamp my feet last night over getting urine sample as still hadn't done so. They did as I said I'm not leaving here until you do it.

She really is weak. Was your mum able to recover fully or has she been left with some deterioration?

Big hugs x

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How horrific! Sorry, no experience there but sending prayers. Ask for a little morphine for yourself. You could probably use some sleep too.

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;)

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We had a similar experience about 10 days ago. My husband was unconscious for 20 mins. and went to hospital via ambulance. They ran every test you can imagine and they're diagnosis changed daily. First low blood pressure due to PSP made him pass out, then stroke, then inner ear infection, then seizures. We were there 6 days, came home with seizure med. And they insist this has nothing to do with PSP although none of the 6 docs have ever treated anyone with PSP! Found this group while during his hospital stay.

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I'm expecting the same outcome really as no one seems to know why or what yet. X

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Glad you found us but so sorry about your ordeal.

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If they have no experience with PSP you would wonder if they did some research before they gave him seizure meds..no answers just pills. My dad had an episode many years ago, he passedout at the table and whenthe paramedics came they could barely find a pulse. Within 10 minutes he was back to normal, his cardiologist chalked it up to low blood pressure, he has been taking medication for high blood pressure for years (not really needed as he doesnt have high blood pressure) but you have to listen to your doctor because they know what they are doing....

It is so frustrating how the professionals don't want to find the root of the problem, they only want to treat with meds that on the flip side, cause many more problems.

Hope your husband is feeling better but I would talk to his PSP specialist about the seizure meds...

Hugs

Paola

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Thanks, Paola. I was surprised but his movement disorder specialist agrees. Doctors are all adamant that this is epilepsy/seizure disorder totally unrelated to PSP. They explain that he has 2 separate neuro illnesses. Anyway, no more seizures so the Keppra is working. But he is extremely fatigued from it and his balance is worse. So today is a new day. Going to do my best to make the most of it.

Hugs to you!

Chris

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My sister has seizures with her CBD. The first time is was so frightening. She is now on Keppra a seizure medication and has done very well. She has only had one very small seizure while on the Keppra. Knowing that it was a seizure, and she was not in danger, we waited it out and she came back to herself after about 3 minutes. Our physician here in the USA said seizures are common in CBD. Hope your mom will get the medication she needs to control the seizures.

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On the CBD-related Yahoo!Group, we have heard of people occasionally having seizures. Often medication is given (depakote). In most cases the family decides not to return to the hospital if a second seizure comes. I guess the thinking is that the hospital can't do very much.

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This is in response to an old post in Feb when your mum had a seizure.

My J has some sort of episode when we were on holiday in UK. We had gone to Fowey and crossed by ferry. He passed out for about 10 minutes before we got up to the Esplanade. He was not himself for the rest of the day but I never thought of getting him to doctor! Suppose it was just the most impossible place for it to happen!

He had problems before we left NZ and had been assessed for a pacemaker as his heart was not working properly.

I mentioned it to his Dr on return and he had one fitted within 6 weeks of returning.

Latterly, he seemed to have some 'spaced out' moments every now and then lasting a minute or so. Then he would sleep more than usual and recover - except there was something else that did not seem to be working quite as well.

I thought that they might be TIAs. So did the Dr when he had one in hospital. However xray showed up nothing.

My conclusion is that the tau protein accumulation would seem to be causing similar effect.

So seizures, or similar, may be part of CBD as we all see it, since there are about 5 reports here!

Hugs

Jen xxx

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The neurologist said to me it was not common but I would imagine it any neurological condition there is a potential as things going on up there all the time. mum has always suffered with myclonic jerks with the condition and a nurse told me recently that is a type of epileptic activity . I am thankful so far she hasn't had another one as it was so traumatic for her and me. Her jerks are more pronounced now.

I find that different symptoms seem to intensify and subside as if different parts of brain is degenerating that week.

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Agree!

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