Just did a mini 11 Oct -the day I went to hosptal with tachycardia. I felt my heart rate flip as I was sitting down at 7.30pm. Pulsing out my chest and throat. 100bpm, 120 bpm, 136, bpm, 180bpm, 120bpm, 136bpm over 20mins,. did what they showed me to try and get revert at home and slowly came down over an hour. Left me nauseous, exhausted and post adrenline MS pins and needles, spasm and elctric... shocks flying through body. I managed it folks. And with my Mary. Wasnt as scary this time as knew what it was was. Was ready to go to Ed or call ambulance if sat at 150bpm for period of time. MS and SVT together make for wicked pain and yeah scary... third attack this year. fifth in four years..... dont get to see neurology till January.... crazy crazy public health system... crazy crazy crazy body.... ok. Watch for post adrenaline despondancy slump thing.....
Thursday 15 December 2011
Tuesday 29 November 2011
Cardio/Neurology shenanigans
Cardio/MS update. New MS drug helping at about 70% pain relief now. More time upright. Its not taking care of the swallowing problem, the head ache, the sense of being off balance, nausea. Im better, but not enough. I am now on the semi urgent Neuro wait list. Might be seen before Christmas. Met cardiologist today. Have to have echocardio test. She is 98% sure that my heart will not show a elec...trical problem or heart disease. I apparently was the healthiest person she had seen all day. Laugh.She validated that many people get depressed after a heart event. She is saying that if I need to return to the med that I just came off, that was so successful in managing the MS for three years, I can return to it. If then I have another tachycarida event, that can be mangaed with more meds. She doesnt know what caused it. Stress could do it, having a virus all winter, placement of the MS lesion, meds, menopause, or just random. May or may not happen again. Im feeling.... some relief (have more options), nausea, and mad that my body has yet again thrown something at me so random that may or may not happen again. I live with enough random spasms, burning, stabbing pain, electric shock sensations, itching, pins and needles, numbness, tattoo gun like sensations. RANDOM. MS truly sucks. Thanks for all yr prayers again. xA
Wednesday 23 November 2011
Friday 21 October 2011
med withdrawal
Was on 20 mg amitrip at night for 18 months then 25 for a while then 30. I developed myokemia. Muscle tics/flicks/spasm and overheating. I thought this was a development of the MS as well as early menopause. Specialist advised possibly serotonin overdose so 10 weeks ago swapped the amitrip for nortrip. Have withdrawn amitrip successfully and gone onto nortrip as well as reduced fluox down to 40 from 50mg. Success in that there no more muscle flicks and overheating. I have also came off the contraceptive pill to help with weight loss stuff.
And now - it looks like nortrtip+fluox (tricyclic + an SSRI) has contributed to the development of tachycardia. And if it hasn’t then it now can contribute to risk of future attacks.
So I am coming off the nortrip. will decrease by 5 mg a week until gone. I wonder if the MS symptoms (pins and needles, eye blurring, neuralgia, headache, dizziness) will stay controlled, increase or not be there as all along its been side effects???? Oh I so look forward to pain. NOT.
The fluox is there to manage depression I have had since age 8 or so and not picked up till 18 and not correctly dx and treated till age 29. This is my second time on this drug. To success. First time 96-98 and withdrew slowly over 6 weeks while using st Johns wart which I then tapered off for 8 months. Stayed free of drug assistance with managing depression until 2006. A friend was dying as was my brother. I agreed to taking them knowing this would be years again. I started at 20mg but 6 months in went up slowly to 50mg. I was on the fluox on its own for 3 years before amitrip was introduced to help manage MS neurological symptoms of pins and needles etc. pain.
I tried to decrease by 10 mgs 2 year ago and symptoms returned quickly so did some more research and took note of the idea that to stay on them for 2 years from the time of feeling well which was Sept 2009.
I had a successful knee operation in April 2009 and came off 4 different types of pain relief and no longer needed a cane or walking stick to hobble with. I pinned that date for the time to wait two years to see how I manage and the depression is stable
So Sep 2011 was the date for first Prozac decrease. I have managed that decrease. Apart from the tachycardia event that has thrown me completely which is being treated as an event, not a depression relapse, my mood is stable still.
I am meant to be decreasing another 10mg of fluox but decided against that while this heart stuff is looked at.
its so tiring... what causes what, what meds interact with what, what condition takes priority... tired tired tired.
And now we have to play either keep the nortrip in and risk tachycardia or take nortrip out, replace the fluox with something that helps with depression and MS, or take nortrip out and leave the fluox is and risk the return of MS pain......
I’ve started the nortrip decrease tonight. Down to 15 mg from 20mg and will do that for one week then....
Watch this space...
And now - it looks like nortrtip+fluox (tricyclic + an SSRI) has contributed to the development of tachycardia. And if it hasn’t then it now can contribute to risk of future attacks.
So I am coming off the nortrip. will decrease by 5 mg a week until gone. I wonder if the MS symptoms (pins and needles, eye blurring, neuralgia, headache, dizziness) will stay controlled, increase or not be there as all along its been side effects???? Oh I so look forward to pain. NOT.
The fluox is there to manage depression I have had since age 8 or so and not picked up till 18 and not correctly dx and treated till age 29. This is my second time on this drug. To success. First time 96-98 and withdrew slowly over 6 weeks while using st Johns wart which I then tapered off for 8 months. Stayed free of drug assistance with managing depression until 2006. A friend was dying as was my brother. I agreed to taking them knowing this would be years again. I started at 20mg but 6 months in went up slowly to 50mg. I was on the fluox on its own for 3 years before amitrip was introduced to help manage MS neurological symptoms of pins and needles etc. pain.
I tried to decrease by 10 mgs 2 year ago and symptoms returned quickly so did some more research and took note of the idea that to stay on them for 2 years from the time of feeling well which was Sept 2009.
I had a successful knee operation in April 2009 and came off 4 different types of pain relief and no longer needed a cane or walking stick to hobble with. I pinned that date for the time to wait two years to see how I manage and the depression is stable
So Sep 2011 was the date for first Prozac decrease. I have managed that decrease. Apart from the tachycardia event that has thrown me completely which is being treated as an event, not a depression relapse, my mood is stable still.
I am meant to be decreasing another 10mg of fluox but decided against that while this heart stuff is looked at.
its so tiring... what causes what, what meds interact with what, what condition takes priority... tired tired tired.
And now we have to play either keep the nortrip in and risk tachycardia or take nortrip out, replace the fluox with something that helps with depression and MS, or take nortrip out and leave the fluox is and risk the return of MS pain......
I’ve started the nortrip decrease tonight. Down to 15 mg from 20mg and will do that for one week then....
Watch this space...
Sunday 16 October 2011
IM BACK from wherever Ive just been
IM BACK. Landed. Yay. Geez. lets not do tachycardia again, the post "I survived a a heart event" euphoria is great. The whump at the end was equivalent to that I experienced on on Friday 28 March 2003 at 5.05pm when a consultant and registrar said to me. "You arent stupid Ann-Marie so we will be straight up, we believe we have found a secondary brain tumour. We want to start looking for the primary site". That day they sent me home over the weekend to think and gave me 2 zopilcone to sleep. I didnt take them. I wanted to live every moment. I watched the sun come up and the light on my black cat on the deck. I went back to the hospital that morning and we waited. After three weeks they sent me home with " we will know in three weeks if its cancer, as it will grow". It didnt. It was a few months haul back to living as Id gone there with liiving those days as potentially my last. Thats what happened this time. I went to that place again of being peacefully reconciled to death and it takes a bit for me to come back. I havent slept in two nights. A third night sometimes bring psychosis so GP has given me sleep stuff to tie me over till tomrrows consult. I can proudly say I havent had to use PRN sleep meds for two years. Tonight I will use it to get the sleep back into rhthym and then I rejig my life again for this term to accomdate what I actually can do while we work out a new health management plan. xo
MS (Multiple sclerosis), SVT (supraventricular Tachycardia) and Depression plus other things
People w MS have higher rates of depression than those who dont.
Depression is both a precursor and a result of Ventricular Tachycardia. And depression of the clinical kind means 4 times more likley to be have a tachycardia event than if not clinically depressed.
I cant help feeling Im F^^&ked.!!??
I am having more trouble accepting this SVT dx and follow up than I did with being told in 2003 that I had a suspected brain tumour that turned out 4 months later to be an MS lesion. The change from incorrect pysch dx, incorrect migraine dx to possible brain tumour, to intial MS dx, to a provisional to a probable to actual after rediagnosis between 1995-2006-was gruelling but at least it was over time. This event? Whacked hard and quickly. And Ive had it for a while but put the dizziness, eye blurring, headache, tight throat down to MS. Just like Id put the sharp jabbing in the rib area to intercostal spasm common in MS just to find its gall stones.
Im trying to get my head around the fact everything is so connected.
MS for me means lowered immue system which means constantly below par with a myriad of MS symptoms (ranging from numbness to extreme pins and needles, balance issues, eyes blurring, swallowing probs, referred pain and chronic fatigue)
plus colds, viruses, chronic sinus infection, gastroentrinitis, skin infections.
I struggle with obesity because of meds and mobility thanks to MS in the left side of my body and ostearthritis in my right leg. (For which I have had a very successful knee replacement but there is no such thing as an ankle replacement). I have no resistance. Im having to fight physicially and emotionally to keep head above waters. Every day. It seems it all comes back to atttitude, diet, choices of friends and connection, good family and friend support, community involvement, stress reduction (meditation, excercise for me, music), hobbies (stamp collecting, photography, genealogy), sleep, having meaning in life, postivity...
F&()(k. Im going to bed. Hope sleep comes.
I am incredibly prvileged with my life. I work for myself, I have an amazing partner of 16 years, I live in my otaki haven, I have the most amazing community, my heath care providers are top notch, I have oodles of friends, my siblings have become my friends, I am professionally repsected, I am musically talented, I have a spiritual faith and..........
I am completely and utterly overwhelmed.
Depression is both a precursor and a result of Ventricular Tachycardia. And depression of the clinical kind means 4 times more likley to be have a tachycardia event than if not clinically depressed.
I cant help feeling Im F^^&ked.!!??
I am having more trouble accepting this SVT dx and follow up than I did with being told in 2003 that I had a suspected brain tumour that turned out 4 months later to be an MS lesion. The change from incorrect pysch dx, incorrect migraine dx to possible brain tumour, to intial MS dx, to a provisional to a probable to actual after rediagnosis between 1995-2006-was gruelling but at least it was over time. This event? Whacked hard and quickly. And Ive had it for a while but put the dizziness, eye blurring, headache, tight throat down to MS. Just like Id put the sharp jabbing in the rib area to intercostal spasm common in MS just to find its gall stones.
Im trying to get my head around the fact everything is so connected.
MS for me means lowered immue system which means constantly below par with a myriad of MS symptoms (ranging from numbness to extreme pins and needles, balance issues, eyes blurring, swallowing probs, referred pain and chronic fatigue)
plus colds, viruses, chronic sinus infection, gastroentrinitis, skin infections.
I struggle with obesity because of meds and mobility thanks to MS in the left side of my body and ostearthritis in my right leg. (For which I have had a very successful knee replacement but there is no such thing as an ankle replacement). I have no resistance. Im having to fight physicially and emotionally to keep head above waters. Every day. It seems it all comes back to atttitude, diet, choices of friends and connection, good family and friend support, community involvement, stress reduction (meditation, excercise for me, music), hobbies (stamp collecting, photography, genealogy), sleep, having meaning in life, postivity...
F&()(k. Im going to bed. Hope sleep comes.
I am incredibly prvileged with my life. I work for myself, I have an amazing partner of 16 years, I live in my otaki haven, I have the most amazing community, my heath care providers are top notch, I have oodles of friends, my siblings have become my friends, I am professionally repsected, I am musically talented, I have a spiritual faith and..........
I am completely and utterly overwhelmed.
Thursday 13 October 2011
not everything can be put down to MS
a heavy chest numb sensation going up into the oesophagus, pins and needles in face and hand, eye blurring, dizziness, off balance, headache are all part of the MS but they are also symptoms of SVT (supraventricular tachycardia). Well gee , now aint that fun.?!
And intercostal muscles spasms which can be the MS could also be the gall stones. gee, thats fun too.!?
Sometimes I am in serious dislike with my body.
And intercostal muscles spasms which can be the MS could also be the gall stones. gee, thats fun too.!?
Sometimes I am in serious dislike with my body.
Tuesday 11 October 2011
word confuddle and heart problem 11 Oct 2011
Tried to say Not only. Said Notly. laff. guess that can be excused in a day where I was in an ambulance contemplating heart failure, by pass, pacemaker and death options. The moment in time where I felt most at peace was when the ambo was in shannon and I was completely at peace with the idea of this being it. I haad no regrets, the personal work had been worth it and all was in order.
The second momnent of peace, injecting the drug to stop the heart to revert it back to normal rhythm.
Apprently I suffered a SVT attack,
http://en.wikipedia.org/wiki/Supraventricular_tachycardia
This explains 3 other episodes in last 4 years including one this birthday. It is not life threatening and manageble but I didnt know that until 6pm tonight.
Started when I notice the struggle and breathlessness in the pool yesterday. Unable to swallow at dinner time. Couldnt stand at choir prac last night. Eye blurring at 10pm. Indigestion feeling at 12midnight. Rapid heart beat at 1am. Woke at 8am drenched. Fainted 4 times between 9 and 12pm. Drove to a friends and lay on their deck while others made decsion ffor me to not drive. Taken to med centre at 12.45.
Pules rate 185bpm. Ambo called. The intensive care speciliast ambo called. Transported at 2pm to pn hosptial. picked up specialst ambo on route. Meds in ambulance didnt bring heart rate down further than 170.
So emergency dept gave med to stop heart and revert it to normal ryhthm. Apprently I had been running a marathon for 28 hours at the pace of a sprint. Mary said the heart monitor stopped and when it came back on I had dropped from 170 to 110 in a course of 8 seconds.
Had oxygen mask on, 2 lines in and resuc cart near by.
So, I am home, Happy to be alive and cancelling rest of my week.
next time I have a technique to use to get it to revert otherwise I am calling an ambo 27 hours earlier.
Love you all
AMS
The second momnent of peace, injecting the drug to stop the heart to revert it back to normal rhythm.
Apprently I suffered a SVT attack,
http://en.wikipedia.org/wiki/Supraventricular_tachycardia
This explains 3 other episodes in last 4 years including one this birthday. It is not life threatening and manageble but I didnt know that until 6pm tonight.
Started when I notice the struggle and breathlessness in the pool yesterday. Unable to swallow at dinner time. Couldnt stand at choir prac last night. Eye blurring at 10pm. Indigestion feeling at 12midnight. Rapid heart beat at 1am. Woke at 8am drenched. Fainted 4 times between 9 and 12pm. Drove to a friends and lay on their deck while others made decsion ffor me to not drive. Taken to med centre at 12.45.
Pules rate 185bpm. Ambo called. The intensive care speciliast ambo called. Transported at 2pm to pn hosptial. picked up specialst ambo on route. Meds in ambulance didnt bring heart rate down further than 170.
So emergency dept gave med to stop heart and revert it to normal ryhthm. Apprently I had been running a marathon for 28 hours at the pace of a sprint. Mary said the heart monitor stopped and when it came back on I had dropped from 170 to 110 in a course of 8 seconds.
Had oxygen mask on, 2 lines in and resuc cart near by.
So, I am home, Happy to be alive and cancelling rest of my week.
next time I have a technique to use to get it to revert otherwise I am calling an ambo 27 hours earlier.
Love you all
AMS
Sunday 9 October 2011
MS and exercise
First time at pool in 18 months; first time in pool in 25 years without my prescription lens goggles. Im not a swimmer. And Im not a keen exerciser. I have MS. The heat of the pool complex gets me. 6 laps in 35 mins. Lap one had break half way. Lap two made it 2/3s before stopping. Lap three, 3/4s of way. Lap four, no stops. Bursting lungs with 10 meters to go. lap 5 walked. Lap 6 made it halfway. Lots of stops each end. My 10am Monday morning commitment with the Otaki MS group for the rest of the year. Todays aftermath. Blurring eyesight and fatigue earlier in day. mmm. Exercise. needs to be done. Isnt enjoyable and it brings on pain.
Saturday 8 October 2011
Managing fatigue
Doing only what one wants to do, with expectation of reciprocity, that leaves me fatigued but happy and soon ready to go again. Otherwise known as fun. I can live with the eye blurring I now have because my weekend energy went into being around good people, supporting me to do what I do best and checking with me how they could help so I didnt fatigue as fast. how cool is that. More please. TIA.
music camp with wellingtons LGBTI quire
Today I took 2 one and half hour sessions of music at camp. I am so thrilled to have been invited and also to have been able to do it- both in music ability and physical capacity. I am very tired with MS fatigue but I way prefer being fatigued from doing something so edifying than doing something that takes and fails to be reciprocal. More music tomorrow.
Wednesday 5 October 2011
Monday 3 October 2011
todays MS word confuddle
I have enormose empathy for Spooner.
Went to say "hold on a min til I sort my nose out" and said "snort my nose out". sigh
Went to say "hold on a min til I sort my nose out" and said "snort my nose out". sigh
Friday 30 September 2011
my MS dictionary
hypoesthesia -numbness
parathesia - pricking
dysesthesia - intense pricking
ataxia - balance
dysarthia - speech
nystagmus - eyes
uthoffs phenomenon - heating
myokemia - muscle tics
MS hug- girdle band sensation - intercostal muscles paresthesia
mild pharyngeal phase dysphagia - swallowing
mild asymmetry on lateralisation, face
Peripheral neuropathies - burning feet syndrome.
Depression
its true, MS truly sucks
parathesia - pricking
dysesthesia - intense pricking
ataxia - balance
dysarthia - speech
nystagmus - eyes
uthoffs phenomenon - heating
myokemia - muscle tics
MS hug- girdle band sensation - intercostal muscles paresthesia
mild pharyngeal phase dysphagia - swallowing
mild asymmetry on lateralisation, face
Peripheral neuropathies - burning feet syndrome.
Depression
its true, MS truly sucks
Tuesday 27 September 2011
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