Good luck! Keep me updated how it goes x 
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Thatās great news! Thanks for letting me know, I hope this continues for you! x
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That sounds really positive already. Hereās to enjoying all those extra awake hours.
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I think it might be difficult to tell the 2 lors of fatigue apart but hopefully in time the apnea fatigue will diminsh and youāll feel loads better for it.
Hope the pressure sore heals quickly & the neq mask is better.
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I had a biPap after ventilator removed the first time. It made me feel safe, so perhaps my joy at having it was caused by having less anxiety. BiPap differs from CPAP by having higher pressure for breathing in, lower for breathing out. I have mild COPD, so breathing out is harder for me. The BiPap also helped me to remember to breathe, or rather my brain to remember, by having that force of air inward at correct intervals. I probably should also go ahead and ask for testing. I have been asked in the past if I were interested, but had too many other things going at the time. Now that I am done with 3 times per week PT, OT, ST and VT, I think I can find the time. Also, here we have pulse/ox sensors that are held in place by the band aids you are speaking of, so I wonder why it wouldnāt work. perhaps it holds the clothspin looking part open if put on too tightly? who knows?
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kfhakifiouwkjglasdfeds
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Hi I had a thalamic stroke in July 2023 age 48
Iād always had a funny sensation in my right arm & leg & put it down to the stroke. 6 months later my arm felt really heavy then like a prickling sensation also my leg spoke to GP who wasnāt sure so contacted stroke consultant he suggested gabapentin & said it was post thalamic pain syndrome. increased gabapentin over time now on max dose end of nov 24 pain as got worse arm heavy now seeing stroke consultant this week. Apparently the prognosis is poor & will now be life long. Could literally chop my arm off. X
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I too had a Thalamic Stroke, mine in June 23 at 56 years old. I had the same pain about a month after. As the pins and needles faded the pain intensified down the whole of the left of my body. The pain I felt was in all of my muscle groups down my left side, shoulder, arm, ribs, abdomen, leg and down into my foot. Iām now on 900mg of Gabapentin 3 times a day with Duloxitine in the morning which had taken the pain away but Iām now feeling the numbness instead, the added Duloxitine took a few weeks to kick in but it felt amazing when the pain stopped. I talked to my Neurosurgeon (Iāve also had a brain aneurysm clipped) who told me what I needed to ask my GP for. He told me that what I have and feel will be with me for life though but Iād like him to be proved wrong.
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Awful isnāt it I could literally cut my arm off have read a lot about it & it looks like it could be permanent. Iām gonna mention the duloxetine see what he says. Thanks for reply
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Not a problem, if I can help in any way let me know. The worst bit for me is this sort of stroke is invisible. Yes weāve had it but nobody can see what we fo through daily, my wife understands, sort of but itās so hard to get across that what I feel is permanent and that thereās going to be no change apart from taking the drugs. Life goes onā¦
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Do you have any issues with the temperature of water? Also weather temp mine seems worse in this cold weather. Also pain is worse in the evening?
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Cold is painful. Cold water almost feels like you burn but on the flip side I can happily get under a very hot shower, which feels wonderful.
I work nights so my day is obviously flipped but certain times if the day are worse than others. I take my meds 3 times a day, if Iām late or forget I definitely suffer with intense pain and numbness which feels fizzy.
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@jay.langdon @Clguest
My stroke was in June 2023 when I was 65.
I would love to chop my stroke arm off - it feels so uncomfortable. I didnāt have a thalamic stroke but can relate to what youāre experiencing. Iāve had numbness and tingling from the start, with the tingling predominately in the stroke arm. I was able to regain considerable sensation through sensory reeducation. I donāt experience the temperature extremes - hot and cold water feel equal on both the right and left sides. But there are areas of the stroke arm/hand that are slightly more sensitive to materials such as metal which can feel a degree or 2 cooler but itās not bothersome.
The shoulder and forearm feel tight and heavy but havenāt always been so. An X-ray showed possible impingement and range of motion hasnāt been 100% so that makes sense. The stroke hand functions pretty well and fine motor skills/dexterity are pretty good as well.
Iāve been reluctant to take medication. I tried Amitriptyline for a few months but it had no effect on the symptoms so I stopped it. I tried medical cannabis which made no difference (and I also reacted negatively to the THC ). All the symptoms I have are sensation related and although I feel very uncomfortable, I canāt say that Iām in pain which could be why I get no relief from medication.
I decided to seek out a Neuro physiotherapist privately for help. Iāve seen her 4 times so far and Iām currently feeling worse than I did in terms of increased awareness of numbness, and tingling that has now become more like a fizzing sensation. But Iām not overly concerned by this because a couple of other problems have been identified which are likely connected. The first is very tight muscles in my shoulder, forearm, back, leg and foot. These are possibly compressing nerves, aggravating the neuropathic symptoms which had previously subsided to a degree before the heaviness/tightness started in my arm and shoulder. The shoulder is feeling a little less uncomfortable since Iāve been doing some focused exercises.The second problem is a weakened hip which is affecting both my arm and leg. Once the hip is strengthened, Iām guessing Iāll stop overcompensating with the right side and my whole body will be more balanced. My therapist wants to focus on the hip - she managed to release tight hip flexors which had the immediate effect of improving blood flow to my toes which are now pink all the time instead of tinged blue when I first get up in the mornings. The therapist has said she thinks there could be a mix of both central and peripheral neuropathy going on but the tight muscles are blurring the true picture and thereās plenty of scope for improvement. So Iāve got plenty of exercises to be getting on with and have decided to join the gym with my therapist coming with me to work out an exercise programme after which Iāll be able get on with it on my own.
I donāt know if any of this is helpful or encouraging to you. Iāve had a battle going on in my mind for quite some time, trying to decide whether this is CPSP or not. My GP would probably be quite happy to say it is and then proceed to prescribe me every pill available. But for me, that isnāt acceptable. Now I know there are other problems, I want to work on fixing them and will reassess the situation at a later date.
Iād be interested in hearing about the pain aspect, as in, what does it feel like etc. I read somewhere that sometimes this kind of pain resolves itself after a few years. I really hope the doctors are proved wrong in your cases.
Trace
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I can definitely sympathise Trace itās awful. Iām seeing my consultant today as mine has got considerably worse over time. Gabapentin hardly working now anxiety can make it a lot worse Iām literally at my wits end I donāt know what more can be done but Iām certainly not expecting big things today as Iāve been studying this type of stroke for a while especially post thalamic nerve pain & prognosis is poor.
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My consultant has told me to wear a warm arm sleeve in cold weather heās also upped my gabapentin to 1200mg 4 times a day I think thatās a lot. He has written to my GP and told him to add another tablet if still no improvement I donāt know what he suggested will wait for letter.
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