Struggling more at 6 months!

hi all
can i just say thankyou for all your posts believe me they help me loads :+1: I am now 6 months post stoke and thought i would be feeling a lot better than i do LOL I am on blood pressure tablets started new ones last week plus on other blood thinners etc. , but now everyday i struggle with slight headaches and feeling wobbly when i first stand up and move around , if i eat food its helps and another thing is it seams to get worse from early evening until i go to bed , plus sleeping is all over the place and used to be 7 hours every night .
I’ve tried talking to my docs and in fact since January ( stroke) I’ve only had my BP checked once by them !!! on top of all this my anxiety is very high and everyday is a rollercoaster of emotion’s , I’ve started going to headway and there support is great but i just want to start feeling slightly better so i can start getting my life back so any help or advice would be great cheers .
regards
Martin

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Hi @Moonie66
The first 6 months -ish includes bodily healing of the oedema and other physical effects of the stroke’s damage to brain tissue. Concurrent possibly but certainly subsequent to that are the compensation and decompensation changes etc as the brain uses primarily neuroplasticity and some neurogenesis. This is ongoing forever and depends on the daily challenges that the brain, which is very lazy in terms of seeking to avoid change, encounters plus diet exercise and every other variation that makes life so damn complex IE emergent.

Some things like long-term fatigue as opposed to short-term fatigue don’t emerge initially, central stroke pain is another thing that seems mainly to emerge after about 4 months or so.

I think most of us have found that things do improve but dare I say you might be being a bit impatient to expect that after 6 months. If so I think that is a dereliction of the medical profession who either don’t know or for some reason won’t share typical recovery patterns with the folk whose lives have been transported to an alien landscape in an instant by the stroke of experienced. Possibly the fear of litigation, and the new bogeyman GDPR have cowed some, many? in the medical profession to not open themselves up to the chance of being sued; so they say " everybody is different” when what they could say is “in my experience the best and worst case you could experience here are …and you’ll most likely be somewhere in the middle but that’s not guaranteed”.

There’s also the chemical adjustments that result from the use of meds. I haven’t read anything about average time scales but I do know that in my case I have a subjective evaluation that it took me 18 months to acclimatize the meds and I’m not convinced that they are without undesired effect even now. I ignorantly suspect that mids are accountable for the aches and pains I feel, the tingling in my peripheries, the adjustments to my taste buds, I’ve been through periods of vertigo which came and went and were suspected of being related to dosage.

I guess you read enough here to know that you’re struggling in some manner is not unusual and 6 months does sound from what I have read to be a not unsurprising time scale. I dare say others will have an opinion from their experience to share and it is a shared experiences of us all that possibly formulates norms are variations against which we can evaluate our own individual recoveries

Ciao

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hi sadly i agree that 6 months is still early days yet !!! just got to keep going and push through , as we all know fully there are good days and bad days !! anyway thanks for the advice and support and as ever this forum is AMAZING :star_struck: :star_struck: i am going to do a clear out next month and any sales will be going to the stroke Association :+1: regards
Martin

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That actually sounds to me like blood pressure issues, either your body still needs time to adjust to the new ones or it’s the wrong dose for you. My best advice would be to monitor your own blood pressure for a week. Do you have a BP machine, if not you can get them in the likes of Boots or your own chemist and not expensive. Take at least 3 readings a day, first thing in the morning before you get out of bed, lunch time and bedtime. Keep a diary of the readings and take that to your doctor and see what they think. I do that now as routine whenever I need to the doctor or annual diabetic checks.

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@Moonie66 sometimes were our own worst enemy, I found as I started to feel better, I pushed myself further and faster, unfortunately my body simply does not function at pre stroke capacity. I had to reluctantly accept that life has to be taken at a slower more relaxed pace.

Fatigue creeps in and hits fast if I do too much (that includes cognitive functions) if I have a busy day at work using the PC, reading, planning etc my body simply says ‘too much’ and I crash.

I still have wobbles, and I’m coming up to 2 years post stroke.

If side effects from medication have been ruled out, be patient and kind to yourself, factor in breaks throughout the day for whatever tasks you’re doing.

In the early days (I’m talking months or possibly the first year) my anxiety levels were high, try deep breathing exercises .

Wishing you all the very best, keep pushing gently forward and contact your GP if you feel there’s something more going on.

Big hugs

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@Moonie66 it could possibly be your BP meds making you feel wobbly. They need a bit of time to settle. If it doesn’t get better go back to your GP so they can be adjusted if necessary.

I get dizzy/fuzzy heads & i’m 18 months on. I asked my GP if it could be BP related and she said no as it would be when i first stand up if it was. Which is a bit like you describe.

I would monitor your BP for a week & see what readings you get then take them to your GP.

Fatigue can also make you feel rubbish. If you’re doing more than you were you might need to rein it back in a little for a while then try again.

Hope you feel better soon.

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Hi Martin I’m like you just 1 month ahead. I had my stroke just before Xmas. I agree it’s scary that these doesn’t check things more often. I’ve only just been checked because I had a diabetic review.likes you I feel wobbly some days and like my legs don’t belong to me but others say I’m not wobbling. I’m trying hard to work on my balance and was going to start an exercise class just for that when I managed to come a cropper on my kitchen floor. I was just starting to believe I was getting much better as well. This road we-are on is long with no consistency but we all must keep going. As my Physio’s used to say listen to your body. Rest when you need to and keep up your exercises. Complain to us here whenever you need to cos people who havnt had strokes really and rarely understand. My best wishes are being sent to you.everyday I treat like anew day and just keep try your best. I’m sure we will get there eventually. Kind regards Suzywong x

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Hi Suzywong and thank you for your kind words and support :smiling_face_with_three_hearts:i worst thing i am trying to get under control is my anxiety but at least they have uped my anti depressants so hoping I start to feel more relaxed soon , I’ve joined a local headway group who offer loads of support and i am sure they will bring me on loads , omg when I had my stroke I felt pretty good for the first month or so and in fact thought i would be going back to work soon !!! LOL got that wrong , anyway you take care and keep pushing but gently :sunglasses: :sunglasses:
regards
Martin

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Take the time to rest when needed. Remember, it is perfectly acceptable to express your frustrations and concerns (here) as those who have not experienced strokes often struggle to fully comprehend the challenges you face. It is understandable that we may occasionally find ourselves growing a tad impatient, but many of us have discovered that improvement does indeed unfold over time.

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Anytime! I don’t know whether what I write helps but it helps me to try and do something worthwhile.I gavejustfinished 8weeks of weekly phone calls with a stroke survivor and we formed such a great bond so muc h she said I would become a good volunteer for the service. I can’t do this until I’m a year post stroke but I’m excited to try. It will help me give back to people who undergo this awful thing. I feel so useless most of the time as I can’t do much.
Keep fighting on regards Suzywong x

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I guess that was the “here for you service”? I’m a volunteer on that I’m between recipients at the moment. finished Michael last week and I’ve got Shirley next week or the week after.
Posting on here is good practise for it too. It’s a rewarding thing to do

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Yes Simon it was. I had a lady called sue who was soo much like me. We had such funny conversations which made me laugh so much. They say laughter is the best medicine and it certainly was.

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hi SimoninEdinburgh and yes thank you for you information and support VERY MUCH greatly received and i really feel the more info we learn the quicker we recover !!! the hardest part is that everybody’s road is different but if you put bits together and they make sense that helps , well it does me anyway cheers :sunglasses: :+1:
regards
Martin

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We got this blood pressure monitor online, it isn’t the cheapest. Ask your practice nurse or doctor to recommend one.
It is a useful bit of kit, letting you self check when you feel you need to. We don’t use it regularly, but sometimes it has been useful.
Always consult the professionals, don’t go solo with self diagnosis.

Despite its price, I would recommend this one, but there are plenty of good alternatives for less money.

It is early days, getting used to what stroke means to both you and those around you. This forum is a great place to get support and input from others going through the same experience. Make good use of it.

Keep on keepin’ on
:writing_hand: :smile: :+1:

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That’s the one I’ve got
I seem to remember it was fairly cheap but you’re right it’s not the cheapest.
I think the next one up is the one I would have bought if I’d realised.
it’s the one with Wi-Fi connection to offload the statistics into a spreadsheet easily

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@Mahoney…this is the most helpful to me. As EmeraldEyes pointed out blood pressure, and you have pointed out medicine side effects, I will point out my wobbles are due to a vision and vestibular issue, also at nearly 2 years out. I am not surprised when a doctor doesn’t come up with the right answer right away. It takes a lot to weed out what is not the problem.

Absolutely…this fatigue frustrates me. I love your advice on this and the anxiety, which is finally pretty much gone for me.

Specifically @Moonie66 I personally and quite a few others here have gotten so far from where we started post stroke(s). Please don’t be dismayed. So frustrating to work so hard to get back to who you were…I am just now realizing I don’t even want to be who I was, but someone much more relaxed and in the moment. That doesn’t mean giving up working toward things I want to do, but it does mean, I don’t have to or want to bring back that overworked, stressed out, perfectionist I was before. Make this your change to be the you that you want to be, instead of who other people, school, work tell you to be.

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Thank you for the reminder that we are learning AND those around us are learning as well. My mouth or mood will get me into trouble if I forget that. Those around us are trying as well but often have no point of reference.

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@Bobbi and @SimonInEdinburgh ,
that the one that we’ve got too.

Originally bought about 8 years ago to monitor my wife’s BP on weekly basis when she changed her MS meds and still going strong.

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Hi ive been doing my BP and its slightly above with an reading of 135/80 :thinking: I’ve been on Indapamide 2.5mg tablets now for 12 days and still having wobbly times and headaches , i was going to see the nurse on Tuesday for a Bp check but that’s now been moved backswords another two weeks so now what do i do ??? .
PS having a bad anxiety day !!! feeling stressed again.
regards
Martin

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Hi @Moonie66
Mine’s normally more than 135 less than 80 I’m normally about 140 over 70 and that’s been for the couple years since my stroke.
I’m on candisertan 16 mg

When I was at your time scales I used to record it daily and then I’d graph it at the end of the month in fact I think if I remember rightly when in your position id take it morning and evening.
I used to take three in the morning, three at night and after a couple of months I could calm it down from the first to the third reading just by relaxing .
Now I probably take it two or three times a month in a little sort of cluster.

When you ask " what do I do now” in what regard? There is nothing to read into a nurse doing a blood pressure check or moving it to happen a week or two later. I would anticipate that when he or she does it it will be a bit higher, typically White Coat Syndrome

I don’t recall if you were ever told and then told us whether you had been given a reason why you had a stroke by high blood pressure and cholesterol law or arterial dissection or something. So maybe they’re still looking at whether or not they can suggest a cause?

Keep on taking the meds is definitely one “what can I do now.”
If you got other risk factors like smoking or a love of ponky French cheese by the kilo or a bottle of good malt per week then those are definitely things to look at in the do next category. If you’ve an undiagnosed PFO or AF then taking up jogging would definitely not be a good idea.

If you haven’t yet managed to identify and stick to some sort of rehab routine then that’s a “what do I do now” too. I can’t stick to an exercise routine but I do shower pretty much every day and I use that both of the benchmark and as my exercise trigger - so my current focus is that I use the soap in my right hand to wash my left armpit and my face. in the last two years I’ve got to the point where I can almost open my hand flat enough to wash the left hand side of my face with my right hand. I’m not quite there yet but I couldn’t move my arm above my navel for a year or more and it’s only fairly recently but I’ve been able to even approximate holding the soap. Also I can now almost drive both legs with my right hand, I’m just recently I’ve managed to push going my hair to the point where I cannot only hold the comb back and do the bit right of the back of the bottom of my neck. That achievement is probably within the last 10 or 20 days. So the development of something that’s sustainable as a capability development regime and an avoider of learnt non-use was a very definite what do I do next for me - of course YMMV

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