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Burned in hell, crawled through purgatory, and now walking amongst the living


[dr...]

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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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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?
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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.
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I just love your story, Drew. So inspiring -- huge respect to you. Many thanks for the update.

 

Wishing you wellness and happiness,

 

Wildflower 💜

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  • 2 months later...

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.

 

 

 

 

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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 Drew.  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.  Mary  :)

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Hi Drew28,

 

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!

 

 

 

Alex

 

 

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

 

I also started a low histamine/lower glutamate diet a week ago.  It’s supposed to help with migraines but can take a month to work.  It’s an elimination diet and you slowly reintroduce food.  It’s very hard at first but now I’m getting it down. I haven’t had a let up with migraines but I used to get palps, breathing stuff, and spaciness every now and then after certain meals.  It hasn’t happened all week so regardless of migraines I think I’m into something. 

 

Will keep the updates coming.

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

 

I also started a low histamine/lower glutamate diet a week ago.  It’s supposed to help with migraines but can take a month to work.  It’s an elimination diet and you slowly reintroduce food.  It’s very hard at first but now I’m getting it down. I haven’t had a let up with migraines but I used to get palps, breathing stuff, and spaciness every now and then after certain meals.  It hasn’t happened all week so regardless of migraines I think I’m into something. 

 

Will keep the updates coming.

 

Please do drew, I have migraines too.  Always interested.  Hope you are on to something.  :)

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Hi Drew,

I'm glad to hear that you're getting better. Good news! I just wondered, though, why you think vitamin B2 and magnesium might have played a role. How? In what way? Were they large doses? These are nutrients that the body needs, so I've never quite understood why and how vitamins and minerals are thought to make people worse.

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

 

I also started a low histamine/lower glutamate diet a week ago.  It’s supposed to help with migraines but can take a month to work.  It’s an elimination diet and you slowly reintroduce food.  It’s very hard at first but now I’m getting it down. I haven’t had a let up with migraines but I used to get palps, breathing stuff, and spaciness every now and then after certain meals.  It hasn’t happened all week so regardless of migraines I think I’m into something. 

 

Will keep the updates coming.

 

Drew, glad to hear things are turning around and thanks always for the updates!

 

Ss24

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Hi Drew,

I'm glad to hear that you're getting better. Good news! I just wondered, though, why you think vitamin B2 and magnesium might have played a role. How? In what way? Were they large doses? These are nutrients that the body needs, so I've never quite understood why and how vitamins and minerals are thought to make people worse.

 

 

I was taking 200mg of B2 and mag for a few days as a migraine prevention strategy.  My symptoms went through the roof!  It may be unrelated but the timing is suspect.  I’m addition, I had revving issues in the past with these vitamins but I decided to try again because I’m so better than last attempt. 

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Hi Drew,

I'm glad to hear that you're getting better. Good news! I just wondered, though, why you think vitamin B2 and magnesium might have played a role. How? In what way? Were they large doses? These are nutrients that the body needs, so I've never quite understood why and how vitamins and minerals are thought to make people worse.

 

 

I was taking 200mg of B2 and mag for a few days as a migraine prevention strategy.  My symptoms went through the roof!  It may be unrelated but the timing is suspect.  I’m addition, I had revving issues in the past with these vitamins but I decided to try again because I’m so better than last attempt.

 

Do you mean 200 mg of each one? That's a lot of B2, but for magnesium, 200 mg is about half of your daily needs. And I guess that if they were taken at the same time, you can't say which one might be problematic, or if it was the combination perhaps. Hard to say, right?

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Hi Drew,

I'm glad to hear that you're getting better. Good news! I just wondered, though, why you think vitamin B2 and magnesium might have played a role. How? In what way? Were they large doses? These are nutrients that the body needs, so I've never quite understood why and how vitamins and minerals are thought to make people worse.

 

 

 

I was taking 200mg of B2 and mag for a few days as a migraine prevention strategy.  My symptoms went through the roof!  It may be unrelated but the timing is suspect.  I’m addition, I had revving issues in the past with these vitamins but I decided to try again because I’m so better than last attempt.

 

Do you mean 200 mg of each one? That's a lot of B2, but for magnesium, 200 mg is about half of your daily needs. And I guess that if they were taken at the same time, you can't say which one might be problematic, or if it was the combination perhaps. Hard to say, right?

 

The therapeutic dose for migraines is 400mg of each.  I know I am very sensitive to anything so I started at a 1/2 dose.  I went in with the attitude that I am way better now and will not react.  As always, there are many factors involved with all of our situations.  I have been getting no sleep, the botox shots made things worse this time(dr. said this can happen and we discontinued going forward), and I took both supps. 

 

I am feeling almost back to baseline right now so I assume it was one of them. That level of symptoms I had hit me was nothing like I felt in years. Don't care to find out which one if any was the cause :) 

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Hi Drew,

I'm glad to hear that you're getting better. Good news! I just wondered, though, why you think vitamin B2 and magnesium might have played a role. How? In what way? Were they large doses? These are nutrients that the body needs, so I've never quite understood why and how vitamins and minerals are thought to make people worse.

 

 

 

I was taking 200mg of B2 and mag for a few days as a migraine prevention strategy.  My symptoms went through the roof!  It may be unrelated but the timing is suspect.  I’m addition, I had revving issues in the past with these vitamins but I decided to try again because I’m so better than last attempt.

 

Do you mean 200 mg of each one? That's a lot of B2, but for magnesium, 200 mg is about half of your daily needs. And I guess that if they were taken at the same time, you can't say which one might be problematic, or if it was the combination perhaps. Hard to say, right?

 

The therapeutic dose for migraines is 400mg of each.  I know I am very sensitive to anything so I started at a 1/2 dose.  I went in with the attitude that I am way better now and will not react.  As always, there are many factors involved with all of our situations.  I have been getting no sleep, the botox shots made things worse this time(dr. said this can happen and we discontinued going forward), and I took both supps. 

 

I am feeling almost back to baseline right now so I assume it was one of them. That level of symptoms I had hit me was nothing like I felt in years. Don't care to find out which one if any was the cause :)

 

Gotcha! Glad you're back to baseline, Drew.

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  • 3 weeks later...

So I am right about one month on my elimination diet to find and find some triggers to my migraines.  I followed a low histamine diet and it also happens to be low in glutamate for the most part.  I did not waver once during that month.  As you know I was in the ER about six weeks ago due to the headache and some other weird crap after I got my botox injections and took some supps to help with the migraines. 

 

I have not had a migraine during the whole time.  My non migraine headaches are down dramatically too.  In addition, I used to get what I call "witching hours" throughout the day.  Sometimes twice and sometimes very light or not during a day.  Sort of like small random adrenaline rushes.  That all went away except for I get a witching hour maybe three times a week now. 

I lost 13 pounds or 7% of my body weight and everything is improved.  I've had some phenomenal nights of sleep, my random pains are way less, no instant congestion for unknown reasons, no palps, etc...

 

I am unsure what food or foods were making me worse or if it is just a window.  With benzos you can never tell but I never felt this good as long as I can remember.  I am adding back in a food every three days to see if I can decipher what revs me.  At this point I strongly believe it is higher glutamate foods that were keeping my last symptoms from clearing up but not sure yet.

 

Lastly, I can really really exercise like never before.  I used to get racing heart, anxiety, and breathing issues after about 25 minutes of exercise almost every time.  The last few weeks I am able to really push myself by going full out while exercising and having no ill effects during or after exercise.  I am shocked.

 

I know this can change in a heartbeat but I am onto something here.

 

 

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Lastly, I can really really exercise like never before.  I used to get racing heart, anxiety, and breathing issues after about 25 minutes of exercise almost every time.  The last few weeks I am able to really push myself by going full out while exercising and having no ill effects during or after exercise.  I am shocked.

 

GREAT NEWS, drew!!!!  :thumbsup: :thumbsup: :thumbsup: :thumbsup:

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  • 2 weeks later...

Okay...six weeks in to the elimination diet and still going strong.  I reintroduced a few foods higher in histamine but not glutamate and didn't react but I am staying on it otherwise as I feel the best I've felt in adulthood.    I am down sixteen pounds (bonus since I did it for migraine and pain), have not had one migraine, and all of my other symptoms that would occasionally show up like body pain, weird witching hours, etc...are reduced down to almost nothing. 

Nothing more to say as I'm hoping it stays this way. 

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Okay...six weeks in to the elimination diet and still going strong.  I reintroduced a few foods higher in histamine but not glutamate and didn't react but I am staying on it otherwise as I feel the best I've felt in adulthood.    I am down sixteen pounds (bonus since I did it for migraine and pain), have not had one migraine, and all of my other symptoms that would occasionally show up like body pain, weird witching hours, etc...are reduced down to almost nothing. 

Nothing more to say as I'm hoping it stays this way.

:hug::smitten:
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Great update Drew....so good to hear! Do you have any specific websites you used to guide you with this? Body pain is one of my lingering symptoms. I eat a very clean diet yet can not budge this pain cycle. I am motivated to try some new changes.

 

Thank you,

Carita

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There are a ton of websites on it but I just bought a book off of amazon by Dr. Becky Campbell.  Some of it is foo foo for my evidence based brain but the diet she recommends is pretty legit and easily described.  It's like $15 and a quick read.
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