• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Stroke

Inca

Senior Member
Messages
278
Hi

I'm not sure if this forum is still active. I seem to have been this forum before but I have had a mid-brain stroke recently which has caused alot of memory issues so apologies if I don't remember anyone who used to talk to me on here.

Physically I am not too much worse off than I was as far as co-ordination and walking with aids, been able to use the mobility scooter but it triggered a severe CF crash, the Tinnitus went mad, really spiked to unbearable levels and my memory and ability to focus is all over the place! :(

I can't judge passing time so I've no idea how long its been since I was last here, I've just been searching through different email accounts I found trying to piece parts of my life together where I have huge chunks of memory missing.

Hope everyone else has been doing ok?
 

Jyoti

Senior Member
Messages
3,352
Hi @Inca. So sorry to hear about this new challenge for you! Sometimes it seems we are asked to muddle our way through far far more than anyone should. It sounds like you are on it, though, working to recover all you can.

I looked up your last postings here and you were active in late January of this year. If that is of any value or help to you. You can go here to read your posts from that time and earlier if you like.

Best wishes in your recovery from this latest.
 

Violeta

Senior Member
Messages
2,722
Hello, Inca, so sorry to hear about you having a stroke and deal with the awful aftermath that it causes. When I had such a bad case of shingles in 2017 and during and for a while after my brain felt like a black hole. I would try to pull up or dig in to memories and it was blank.

I didn't know about panax ginseng back then but since have been reading a lot about it.

Here is a study that indicates it can help with neurological damage caused by stroke. I hope you find it helpful.

I will post the important paragraph because looking at these studies can be overwhelming.

Ginseng: a promising neuroprotective strategy in stroke​


The most common ginseng variant in traditional herbal medicine is ginseng, which is made from the peeled and dried root of Panax Ginseng. Ginseng has been suggested as an effective treatment for a vast array of neurological disorders, including stroke and other acute and chronic neurodegenerative disorders.

If you want more information about it, I would be glad to look through the study and copy/paste it for you.

Here's the link to the study:

https://www.ncbi.nlm.nih.gov/pmc/ar...acute and chronic neurodegenerative disorders.
 

Inca

Senior Member
Messages
278
Hi @Inca. So sorry to hear about this new challenge for you! Sometimes it seems we are asked to muddle our way through far far more than anyone should. It sounds like you are on it, though, working to recover all you can.

I looked up your last postings here and you were active in late January of this year. If that is of any value or help to you. You can go here to read your posts from that time and earlier if you like.

Best wishes in your recovery from this latest.

Thank you....yes that sounds about right...I had really heavy dissociation then can't remember much until the brain fog has eased off enough for me to understand what happened. I'm in peri menopause too so it's hard to know how much was that. The fatigue and tinnitus has felt the worse.

Realisation of memory issues didn't occur until someone came who expected me to know them and I didn't have a clue who they were! I had initally thankfully remembered immediate family and my dog but cos I was still shielding hadn't seen anyone else (socially to visit or go out with) since before pandemic started!

Just trying to work out how much is missing now!
 

Inca

Senior Member
Messages
278
Hello, Inca, so sorry to hear about you having a stroke and deal with the awful aftermath that it causes. When I had such a bad case of shingles in 2017 and during and for a while after my brain felt like a black hole. I would try to pull up or dig in to memories and it was blank.

I didn't know about panax ginseng back then but since have been reading a lot about it.

Here is a study that indicates it can help with neurological damage caused by stroke. I hope you find it helpful.

I will post the important paragraph because looking at these studies can be overwhelming.

Ginseng: a promising neuroprotective strategy in stroke​


The most common ginseng variant in traditional herbal medicine is ginseng, which is made from the peeled and dried root of Panax Ginseng. Ginseng has been suggested as an effective treatment for a vast array of neurological disorders, including stroke and other acute and chronic neurodegenerative disorders.

If you want more information about it, I would be glad to look through the study and copy/paste it for you.

Here's the link to the study:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4299449/#:~:text=The most common ginseng variant,acute and chronic neurodegenerative disorders.
oh Thank you!...I've copied the link to a new tab so will go through a bit at a time. I think I've heard of Ginseng but the word 'Panax' isn't familiar....is that a brand name? I'll try looking it up and see what comes up. Luckily I didn't lose my ability to read ...it seems to have been a 'mild' stroke in the Thalamus which affects memory, attention, personality stuff like that rather than physical. (though I was already disabled from a previous stroke in my 30's leaving me with ataxia).

I could do with something for energy! I get tired so quick but things like sugar and caffeine spikes the Tinnitus and its bad enough on a 'good day' it doesn't let up (just slightly quieter for a while if I'm lucky!).
 

Violeta

Senior Member
Messages
2,722
Korean red ginseng is a plant that grows in Asia. It's sometimes known as Asian ginseng, Chinese ginseng, or panax ginseng. Korean red ginseng shouldn't be confused with Siberian ginseng or American ginseng. Siberian and American ginseng are different plants that serve different needs.

There are different preparations of panax ginseng, too. If it's a white powder it isn't as potent. I first bought the red powder, it worked really well. I can tell because it almost immediately helps with a mild depression feeling I get. Then I bought some that is white powder because it seemed more economical and it didn't do the same thing.
 

Judee

Psalm 46:1-3
Messages
4,250
Location
Great Lakes
@Inca, I'm so sorry you went though that. We were concerned on what had happened to you. I'm hoping your coming back on the site means some of those areas of your brain that were damaged by the stroke are starting to recover.
 

Inca

Senior Member
Messages
278
@Inca, I'm so sorry you went though that. We were concerned on what had happened to you. I'm hoping your coming back on the site means some of those areas of your brain that were damaged by the stroke are starting to recover.
Thank you. I have a bit more energy available to be able to get up and potter round the house again, manage coming online a bit to shop or check email. I play video games to try and get my co-ordination on track again. I tire quickly though so things can't go on for longer than an hour.

One side is a bit weaker than the other, so if I overdo things I feel it on that side first but its not paralysed. but for example when i injured my 'good leg', the weak side isnt strong enough to take the weight and grip (on that side) not strong enough to hold a crutch on that side so am back to powerchair for now just to get round the house. I can manage to transfer though and have managed to get my dog out with the scooter (which handles the fields and stuff better than chair). Getting out with him is good for mental health but it used all my spoons for the day, so spend rest of day recovering in bed

My written english is good as you can see though I do have assistive tech on my computer with word and sentence prediction and common short cuts eg imessages ... hhu auto expands to 'Hi, How are You?' ..typing r.e brings up 'rest' ..which if that's the first word I typed brings up sentence option. 'I need to go take a rest now' etc ..physically speaking and lip-reading is exhausting... no-one signs around here but I can't remember alot of signs now anyway. People at least assume theyre talking to an intelligent adult online...in person cos of my difficulty getting words out I often get people trying to second guess, finish sentences and talking to me like I'm 5 or something! ...Frustration has been my biggest issue!
 

Emmarose47

Senior Member
Messages
1,916
Location
UK
Hi @Inca I remember you being here before... Welcome back x 💜
So glad u found us again and can get support. You've been through a lot and are a warrior just like many of us..
I relate to the mobility scooter. I bought a new one more recently and crashed after 7 wks of being 'stable'. But hey we don't know till we try.
Gentle recovery to u x
 

Inca

Senior Member
Messages
278
Hi @Inca I remember you being here before... Welcome back x 💜
So glad u found us again and can get support. You've been through a lot and are a warrior just like many of us..
I relate to the mobility scooter. I bought a new one more recently and crashed after 7 wks of being 'stable'. But hey we don't know till we try.
Gentle recovery to u x
Hi Hope your ok?.. I'm not sure if you mean the crashed the scooter after having it 7 weeks or crash as in ME crash!

I only use mine to walk my dog and go out while its quiet on roads and pavements. Don't think I could cope with it in a busy supermaket or town etc these days..but its a quiet village and if I go when hardly anyone is about its not too taxing on the senses!! I find busy places and too many people at once a bit overwhelming these days!
 

Emmarose47

Senior Member
Messages
1,916
Location
UK
Hi Hope your ok?.. I'm not sure if you mean the crashed the scooter after having it 7 weeks or crash as in ME crash!

I only use mine to walk my dog and go out while its quiet on roads and pavements. Don't think I could cope with it in a busy supermaket or town etc these days..but its a quiet village and if I go when hardly anyone is about its not too taxing on the senses!! I find busy places and too many people at once a bit overwhelming these days!
Hi @Inca
Oh yes 🙂crashed as in flare up..
I went a little way to see the church at the back of where I live. Only saw 1 person and 1car but hey is what it is we learn about surrender acceptance with M. E don't we!!
 

Inca

Senior Member
Messages
278
Hi @Inca
Oh yes 🙂crashed as in flare up..
I went a little way to see the church at the back of where I live. Only saw 1 person and 1car but hey is what it is we learn about surrender acceptance with M. E don't we!!
I guess it would be useful to keep if you needed to get anywhere local but maybe not a daily event going out? but you'd need to make sure its charged up so batteries don't lose capacity.

I tried to manage every other day with JJ at first only once but he's 11 this year and starting with arthritis so was limping and stiff himself..especially the colder months. He's on a new stronger supplement now so is doig better and for the most part I'm managing to get him out daily even if its only to field at end of road then back to bed!

I don't think I'd have managed if he was still young and needing a lot of exercise. I focus more on mental exercise/games around house and garden to tire him..scent tracking, puzzles and helping me round the house. He will be my last large active dog I think.
 

Emmarose47

Senior Member
Messages
1,916
Location
UK
Aww lovely u have each other..
Yep the Scooter is permanently plugged in at mo as its in the community lounge and I don't walk there often.
Thing is I can stable and doing well for wks and then bam it's like a switch flicks and I'm in flare for wks approx 2 mths. I'm in a flare within a flare at mo so no idea how it will go..
 

Inca

Senior Member
Messages
278
Aww lovely u have each other..
Yep the Scooter is permanently plugged in at mo as its in the community lounge and I don't walk there often.
Thing is I can stable and doing well for wks and then bam it's like a switch flicks and I'm in flare for wks approx 2 mths. I'm in a flare within a flare at mo so no idea how it will go..
Hope it improves for you...my stroke triggered a major flare up Its taken about 6 months to work through. My Tinnitus is bad at the minute though I wonder if its because of all the thunderstorms we've been having almost daily due to the hot humid weather as it had been improving after the last heatwave we had. ...Another one forecast for later today and my head is like its got a beehive inside it!!! ..even WITH using a Tinnitus masker I'm not getting much relief, it's still quite loud.. which gets exhausting when there's no break from it! :confused:
 

Emmarose47

Senior Member
Messages
1,916
Location
UK
Ah yes the lovely tinnitus... Mine increases with flare and using screens so right now it's just upped it's game..
Good to hear u worked through the flare inca. I can imagine it was frightening and long
 

lenora

Senior Member
Messages
4,685
Hi @Inca.....I'm sorry to hear about your stroke. I had autoimmune encephalitis about 18 mos. ago, and do know what you mean about your mental state. Everyone assumes your fine (because don't we look it), yet I know something is missing and I don't like it.

I've had shingles on 4 different occasions, but fortunately no stroke symptoms from that. Of course, no one would want this illness....it's about the worst there is. The first time isn't as bad as subsequent breakouts, but it could take anyone's mind and do something not-great with it.

The ginseng for stroke is Korean ginseng....but I don't have a brand name. Anyone??? I would appreciate it...and know that we all would. In the meantime, be healthy and content. Yours, Lenora