Author Topic: Burned in hell, crawled through purgatory, and now walking amongst the living  (Read 9853 times)

[Buddie]

Re: Burned in hell, crawled through purgatory, and now walking amongst the living
« Reply #100 on: November 07, 2019, 02:59:53 pm »
Just figure I'd give a brief update.  Things still improving.  I still have some periods of head and muscle stuff. Light sensitivity is still very annoying.  Migraines are less frequent and a hell of a lot less painful.  Very rarely do they put me in bed for the day.  No more weird brain or witching hours throughout day where i get symptomatic for an hour or two with crazy stuff.  Very few palps or adrenaline rushes.  Even now that I am drinking two cups of coffee a day and exercising real hard at times.  My exercise intolerance is mostly gone but still have a ways to go to get back to a place I am happy with.  I hired a personal trainer and I am pushing myself.
I still practice lots of self care as if I overdo things it can catch up to me.  My fatigue is improving but I still need to rest or nap for an hour or so in early afternoon(I wake up at 6am though) to refresh my brain.
All in all I feel present and decent most of the time.
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[Buddie]

Re: Burned in hell, crawled through purgatory, and now walking amongst the living
« Reply #101 on: November 07, 2019, 03:29:06 pm »
Good to see you are still improving. Fatigue has been brutal for me too. I'm at work now and just want to be asleep. I have fatigue the moment any life stressor appears. Are you still working?
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Burned in hell, crawled through purgatory, and now walking amongst the living
« Reply #102 on: November 07, 2019, 06:28:13 pm »
Yes I am working.  I work 95% from home now due to the lights in my office building being a major trigger migraines/head pain.  Luckily it doesn't affect my business at all and I know I am fortunate.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Burned in hell, crawled through purgatory, and now walking amongst the living
« Reply #103 on: November 07, 2019, 06:43:45 pm »
Great to hear you are exercising and drinking 2 cups of coffee a day, [...]!!!  :thumbsup: :thumbsup:
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Burned in hell, crawled through purgatory, and now walking amongst the living
« Reply #104 on: November 07, 2019, 07:41:19 pm »
Dear [...],
   So good to hear you are seeing more progress and doing well. It has been a long road.
Sending you best wishes,

[...] :smitten:
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[Buddie]

Re: Burned in hell, crawled through purgatory, and now walking amongst the living
« Reply #105 on: November 07, 2019, 07:58:55 pm »
I just love your story, [...]. So inspiring -- huge respect to you. Many thanks for the update.

Wishing you wellness and happiness,

[...] 💜
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[Buddie]

I knew it was a possibility and after doing really well, I am in a wave form hell.  I have had constant head pressure, anxiety and panic surges, the crazy thoughts, looping health fears, insomnia and what feels like my brain is shaken like a tree really fast which makes me off balance.  Ugh...

Fortunately I haven't had these things for years but unfortunately I forgot my coping skills of just going with the symptoms instead of fighting them.  I ended up in the ER and everything checked out fine. Heart sounds good, no sign of stroke, etc...   I have an mri scheduled for two weeks for now but I am 99% sure it's all withdrawal.  The brain feeling like shaking in head was new to me so I freaked.

I have been getting botox for migraines and it seemed to help at first, but I think the last two times have made things worse.  It really ramped after the shots.

i am working on acceptance and going low and slow until I this resides a bit. It sucks but nothing i can do.



Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

I knew it was a possibility and after doing really well, I am in a wave form hell.  I have had constant head pressure, anxiety and panic surges, the crazy thoughts, looping health fears, insomnia and what feels like my brain is shaken like a tree really fast which makes me off balance.  Ugh...

Fortunately I haven't had these things for years but unfortunately I forgot my coping skills of just going with the symptoms instead of fighting them.  I ended up in the ER and everything checked out fine. Heart sounds good, no sign of stroke, etc...   I have an mri scheduled for two weeks for now but I am 99% sure it's all withdrawal.  The brain feeling like shaking in head was new to me so I freaked.

I have been getting botox for migraines and it seemed to help at first, but I think the last two times have made things worse.  It really ramped after the shots.

i am working on acceptance and going low and slow until I this resides a bit. It sucks but nothing i can do.

Oh, I am so sorry [...].  I have migraines and have had Botox, it never helped me.  They have new meds out now for migraines if you want to look into them.  My pain mgmt Dr says she is getting really good results.  Hope you feel better soon.  Keep us posted.  [...]  :)
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[Buddie]

Hi [...],

Sorry to hear about your setback.

Lots of people like me have looked at your updates, and they give us encouragement. Please keep us updated.

Pulling for you to be 100% ASAP!



[...]

Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Update- things are settling down.  All the crazy stuff is gone. Not back to baseline yet as I expect thatíll take a few weeks as this was a doozy.  Met with neurologist and she felt, along with a Baylissa, the Botox couldíve made thinks worse.  Sheís seen it before where it works well for a bit and then it doesnít. We agreed no more Botox for now. Also, adding B2 and magnesium Iím sure contributed too.

I also started a low histamine/lower glutamate diet a week ago.  Itís supposed to help with migraines but can take a month to work.  Itís an elimination diet and you slowly reintroduce food.  Itís very hard at first but now Iím getting it down. I havenít had a let up with migraines but I used to get palps, breathing stuff, and spaciness every now and then after certain meals.  It hasnít happened all week so regardless of migraines I think Iím into something. 

Will keep the updates coming.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.