Ups and downs (more downs than ups)

[roccello]

I had a ischemic stroke in february in the left side of the cerebellum. Vertigo and dizziness has been my worst symptoms. They come and go and I have seen better days. Statins seemed to cause muscle aches and parestesia, along with more dizziness.
Last month has been rough, I have a lot of muscle pain, even since I have been off statins for 3 weeks now because my insurance neurologist told me that for my case, since my stroke was caused by a dissection caused by a trauma (chiropractic) in my neck, was just a protocol and he told to continue just with aspirin.
My biggest challenge is the fatigue, I guess. Sometimes I feel a bit better but must of the time I still get dizziness, muscle pains after a short walk, specially in the evenings, burning, itchy and needles sensations in my fingers, legs and arms, which triggered a visit to the ER a couple a weeks ago (exactly by the tine when Hamilton won at Silverstone). The ER doctor sent me home after checking and discarding FAST symptoms. My pulse was elevated, they performed a ECG which came out ok, BP ok, even a bit low 107/75 (Im 44).
I had a glucose monitor for 14 days to check if I have been having hypoglycemic episodes, which I had like 7 years ago, finished yesterday and no hypos, but I found that carbs do spike my glucose level, something I can control now, specially bread something that Im now just totally leaving out of my diet.
Right now Im also going through some kind of cold that is making muscle, head and body pain even worse, the burning and itchy sensations are just worse, specially last night, feel like I have a ruber band around my head.
All allong I feel that this is getting the best of me and Im loosing the fight. I feel that I have gotten worse and Im very preoccupied about the future. I havent been able to work properly, just a couple of hours on good days, that are very few. In june I started some light exercises with bands at home which for about three weeks where just right and felt great, but the las week after exercising got worse on a friday and that sunday was the time I had go to the ER.

I think Im loosing this fight. When I feel less bad I get optimistic and even think about getting back home (I live alone but after the stroke, I got back home for a month and because of the dizziness I moved to my mom’s house, I still have my rented apartment with all my stuff but to date I haven felt secure enough to get back to live by my own) but when I feel more bad I just feel pessimistic and sometimes I think im just deteriorating instead of recovering, and is affecting ny mom, my sister and the rest of my family. Should I just get back home alone and take my chances? i feel a bit better beeing with my mom, sister and her family because I believe I have some backup in case thinks get worse, but am I beeing just spoiled? Is it what I need right now?
I dont think that much of another stroke happening, but I get the idea sometimes. What is worse is the feeling of not being able to be independent anymore in my life, and loosing all my financial independence (have my own design studio with no clients for this year).
I have a fear of having to depend on someone to live and with the burning sensations all over different parts of my body I have i fear that more than fatigue, central pain is waking up in my process and have so much fear of it.

My sequels are not that bad, I can walk, move, and do almost everything by mi self. I feel a bit selfish because I know so many survivors would give anything to have the capabilities I have today. I lost no mobility whatsoever but my walking and standing have been affected from dizziness, especially after some movements or standing up (I think I can call vertigo just the episode the day they diagnosed my stroke which never repeated, the rest I call light and moderate dizziness) and I think my muscle weakness make that even worse. I used to be a very active person, walking long distances, gym, but since stroke I’ve been very limited to move so maybe spasticity or muscle atrophy? I really just dont know anymore.
Next monday I’ll have an angiotac to check my dissected artery and some days after the 6 months control with the CVA center neurologist.
Im so anxious right now because I see no evolution and contrary feel Im going backwards and fear a fatigue that will never go, like so many people in the forum, or a new central pain that will be so challenging.

Sorry for the long one and my pessimistic emotional state right now. Im working with a psychiatrist for two months now but this kind of days, or weeks to be more precise, make me fell just like the worse is jet to come.

[Mrs5K]

@roccello sorry to hear you’re feeling so despondent at the moment. The first thing I will say is that you are still in the relatively early stages after your stroke and there is every reason to believe you will continue to improve. Recovery journey is a long one…years perhaps rather than months.

I can relate re the dizziness as I too get a lot of it. My stroke affected a different area of my brain but the dizziness sounds similar. The first 8 or 9 months after my stroke I thought the feelings / sensations I was getting in my head were never going to go away but in time they did improve a bit. I still get them but not to the scale I did. The dizziness lasted much longer at a horrid level & I had many a moment where I thought this was going to be it for life & tgst if that was the case I didn’t think I could cope. I still get spells of dizziness, especially when fatigued, but I now also get an odd day without the dizziness. Hopefully you will get to this point too or maybe it’ll disappear completely. I hope so.

Only you know how you’ll cope back in your own home & that’s a decision for yoy. However, what about trying it for a couple of days…maybe 1 overnight stop to see how you get on. You might surprise yourself. If it doesn’t work out you can always go back to your mums.

You are not losing the fight. You are strong & you can keep going. It isn’t an easy road but it’s worth the travel. You will improve. It takes hard work, determination & bucket loads of patience but it is definitely worth it. Keep a diary so you can track how far you’ve come. I used to write how i felt in it, scored my fatigue & dizxiness, kept a not of what i’d done each day. On my bad days I then looked back & could see that i had made some progress despite not thinking I had.

Sending my best wishes.

Ann

[pando]

@roccello

spasticity or muscle atrophy

It’s a rough ride, Roccello
atrophy follows from spasticity (unlikely in your case)
next best thing is Mr. spasm (you’d be screaming in pain like me)
next is stiffness from a slight loss of innervation

But cerebellum stroke is indeed rough for dizziness (and we know it coordinates movement and balance). Feeling you are losing the fight is something I know a bit about.

Just remember your body wants to get better, you need to give it the best chance by tweaking every aspect of your life. The good news is you can start right now. And lastly you need complete faith in your complete recovery…

Wishing you the best, ciao, Roland

[SimonInEdinburgh]

I agree with what Ann and Roland have said. You’re very early in your stroke journey. I think the first 18 months of mine saw lots of changes before I started to see meaningful progress and even now I get random new Not right feelings emerging.

I was affected by dizziness at some point and it went away but It was probably blood pressure meds that were causing that and a phenomenon known as postural drop. If you take your blood pressure seated then stand wait a couple of minutes and take it again if there has been a drop then maybe your blood pressure meds need adjusting? By GP and I are still fiddling with mine 3 years post to get the right balance

The emotional side of things is a roller coaster. Your brain chemistry is potentially adapting. Certainly emotional changes post stroke are not uncommon if for no other reason than the PTSD. At one point an SSRI (there are several similar medications with different combinations of letters) was recommended to me for improved mood. That may be a worthwhile conversation?

I’m confused by parts of your post above; you said your stroke was caused by a dissection and was ischaemic. Ischaemic strokes are a lack of blood supply through a clot. Dissections are a failure of supply through a leakage. Did you mean that the chiropractor ruptured a blood vessel that then caused a clot that travelled into your brain? (Why do chiropractors continue to do this neck cracking anyway?) I can see why an anti-platelet medication would not be indicated if you had a clot caused by a mechanical failure but then why would you need anything clopidogrel or aspirin - they’re doing essentially the same job That is reducing the likelihood of clots

You’ve alluded once or twice to pain parathesia burning etc. are you aware that there is a condition called central post stroke pain and the most common onset is around 3 to 5 months post stroke. There’s a very very very long thread about it and several shorter ones. The Long thread was summarised by Nigel here

I think you raised the right questions about where you live but none of us can answer that for you. I’m confident in predicting that if you go to your flat you will manage physically and the effort to manage will be beneficial to your recovery and your long-term independence. It may not be the right time and/or it may not be the best for your emotional health - only you can judge those components.

Don’t worry about long posts and do continue to unburden yourself as is helpful to you

Caio
Simon

[roccello]

Hi Simon thanks for your response.

Yes. My stroke was caused by the dissection in my left vertebral artery which caused an occlusion and that caused the lack of blood to the cerebellum, left side. It did not got to rupture but did caused enough blockage to stop the blood flow to further smaller vessels. Still that is something I would ask my neurologist. They do say my stroke was very very small and was checked by a second MRI 3 month ago and at least at that moment no other damage was caused. I think there was no clot and the clopi for 20 days and aspirin (still taking it) is to prevent further cloting while the artery repairs, that is what I understand. My BP is ok. About 2 years ago I took valsartan but with some life styles changes I was able to drop it with my GP following the process and now is actually a bit low sometimes.

Yes I read the post about central pain and a lot of literature our there. My psychiatrist says is very unlikely that I develop CP since is not commonly connected with cerebellum stroke, and more with parts of the cerebellum (not only thalamus) and all my aches are probably connected with the lack of activity in my muscles since I have reduced my activity to 20% of what I used to walk, move and exercise, still I fear the condition since I know is very debilitating and bothersome. Hope that is the case and with some activity I get to recover at least that part. I believe, even when I stoped taking statins about 3 weeks ago, they had something to do with muscle mialgias that maybe haven’t stoped just yet and I need some physical recovery therapy of some sort to get my muscles into shape again, that is what I hope at least.

My psychiatrist recommended some antidepressants but asked me to check with my neurologist so it wont affect anything related to the artery recovery or antiplatelete effect from the aspirin.

I know what you say about the chiropractor neck craking. They should know better is a very dangerous think to do.

@SimonInEdinburgh you still have dizziness I understand? How do you cope with it? Does it get worse when you catch a cold or some seasonal virus?

Like I said before I feel so selfish because I was so lucky with what resulted after the stroke. I lost no mobility, no speech and can do everything by myself, and compared to people who resulted with far more thinks to cope with, I still feel so bad and maybe bot the thankful I should be. You all are warriors and an example to everyone in this community.

Best wishes for everyone’s recovery.