NorthStar: postpartum year hell - ~20 meds on and off

[ChessieCat]

Please simplify your drug signature.  We only need drug name/s, dates, doses.

 

The information in your current drug signature is very helpful but we need to be able to see your drug history at a glance without having to read through it to get the information we need.  Please copy and paste the current drug signature into a post here in your introduction topic then add a link to the post by right clicking the share icon (top right of the post) and pasting that in your drug signature.  This way we can access the information quickly if we need additional information.  Next, create a simplified drug signature using the following format:

 

Please create your drug signature using the following format.   Keep it simple.  NO diagnoses or symptoms please - thank you.

• details for last 2 years - dates, ALL drugs, doses
• summary for older than 2 years - just years and drug/s

Account Settings – Create or Edit a signature

 

Thank you.

 

[ChessieCat]

Here is a copy of your current drug signature just in case you forget to copy and paste it before creating the new drug signature.

 

1999ish-2005 (6th grade – high school): Zoloft, Lexapro, Wellbutrin (none particularly helpful?)

2005-2009: No meds, doing okay

2009-2017: Prozac (40mg) and Xanax PRN (took maybe 10x/yr); went off with no issues when pregnant.

Summer 2017-May 2018: Some depression and agitation during pregnancy, but otherwise okay.

After birth of son in May 2018: suffered through severe postpartum depression and anxiety, and waded through a hellish year of 20+ med trials of various combinations (took 1,000-2000 vitamin D/day, multivitamin, fish oil, 400-800 mcg folic acid, probiotics, and sometimes evening primrose oil throughout much of this time):

• July 2018: 6mg Zoloft once (bad reaction)
• July - Sept 2018: 0.5 - 1mg Ativan/day PRN
• Sept 2018: 1-7mg Prozac (bad reaction; couldn't make it passed 7mg)
• Sept - Nov 2018: 0.25 - 0.75mg Klonopin/day PRN and for sleep
• Nov 2018: 3-day Anafranil trial (25 mg); reaction --> hospital
• Late-Nov - Early-Dec 2018: 100mg Seroquel + 0.5mg Klonopin 2x/day (eventually reduced to 0.25mg 2x/day)
• Early-Dec 2018 - Early-Jan 2019: Worked up to 100mg Lamictal/day + 2.5mg Zyprexa/day + 0.5-1.5 mg Ativan/day
• Early-Jan 2019: Bad reaction to above meds --> hospital for a week
• Early-to-mid - Jan 2019: 5mg Paxil + 0.5mg Klonopin 2x/day + 0.25-1mg risperidone 1-2x/day + 50mg Benadryl (sleep)/night; bad reaction (high HR, orthostasis) to risperidone after 1 week so taken off...
• Late-Jan 2019: 5mg Paxil + 0.5mg Klonopin 2x/day + 100-150mg Seroquel/night; mood worsened, back in hospital...
• Late-Jan - Mid-Feb 2019 (hospital):
  • First week: 0.5 mg Klonopin 2x/day, 100 mg Seroquel at night, 300mg XR lithium 2x/day (HORRIBLE stomach reaction, especially when the doc abruptly pulled the Seroquel)
  • Second week: 0.5 mg Klonopin 2x/day, 50mg Seroquel at night, some amount of Depakote (I don’t remember – wasn’t improving, irritable), tried PRNs of 12.5mg Seroquel and became really depressed
  • Third week: 1 mg Klonopin 2x/day, 50mg Seroquel at night, 1200mg gabapentin (taken as 300mg twice during the day, and 600mg at night). That’s how I left the hospital.
• Mid-Feb - Early-March 2019: 0.75mg Klonopin 2x/day, 50mg Seroquel at night, 300mg Gabapentin 2x daytime and 600mg at night, brief re-trial of lithium – 150mg (though some mood improvement, bad stomach reaction so pulled off again)
• Mid-March 2019: →0.25mg Klonopin during day + 0.5-0.75mg/night, 25mg Seroquel/night, 200mg Gabapentin 2x daytime + 300mg/night, brief re-trial of Depakote – don’t remember dosage
• Mid-March 2019: Akathisia diagnosis
• Early-April 2019: Hyperthyroidism from thyroiditis (docs suspect lithium) diagnosis
• April 2019 - Present:
  • Hyperthyroidism resolved; slight hypothyroidism (normal-to-low TSH, normal T3, borderline low T4)
  • Tapered from 25 to 0mg Seroquel; sleep has been rougher
  • Tapered ABRUPTLY to 0mg Propranolol (due to thyroiditis resolution and LOW BP); heart palpitations and orthostasis
  • Tapered ABRUPTLY from 400 to 0-200mg gabapentin during day; take 300mg/night
  • 0.5mg Klonopin/night
  • 1,000-2,000 IU vitamin D/day, 5mg SR melatonin (+10mg B6)/night, fish oil/day, 200-400mg magnesium glycinate at night, and magnesium oxide throughout day, Cal+Mag+Potassium/day, 2 kinds of probiotics/day, 1500mg evening primrose oil/day
  • Chronic, AWFUL akathisia; insomnia; poor appetite; weight loss; hormone issues; orthostasis; depression, anxiety, deregulation

[NorthStar]

51 minutes ago, ChessieCat said:

Please simplify your drug signature.  We only need drug name/s, dates, doses.

 

The information in your current drug signature is very helpful but we need to be able to see your drug history at a glance without having to read through it to get the information we need.  Please copy and paste the current drug signature into a post here in your introduction topic then add a link to the post by right clicking the share icon (top right of the post) and pasting that in your drug signature.  This way we can access the information quickly if we need additional information.  Next, create a simplified drug signature using the following format:

 

Please create your drug signature using the following format.   Keep it simple.  NO diagnoses or symptoms please - thank you.

• details for last 2 years - dates, ALL drugs, doses
• summary for older than 2 years - just years and drug/s

Account Settings – Create or Edit a signature

 

Thank you.

 

 

@ChessieCat Okay... I'm sorry for adding to confusion. I do feel like I'm getting mixed messages though; I've already created what I thought was a thorough history in my first Introduction post, and was then told to include a summary of that in my signature. I did shorten my signature as much as I could while abiding my the "details for last 2 years" and "summary for older than 2 year" rule. I've been on over 20 cocktails in the last year, so is there something you want me to leave out? I'll try trimming. Sorry.

[Sassenach]

On 7/13/2019 at 7:15 PM, Sassenach said:

They may need less activity detail in course to make it easier for you but they will tell you.

 

Ho Northstar

 

I hope we are not sending mixed messages.

I have a wave going on now so cannot sort the info above.

Will get back to you tomorrow.

Keep it steady

Sassenach

[NorthStar]

Mon, July 15

22 hours ago, NorthStar said:

7:00am - up w/ B *racing heart/dysregulation*

8/8:30 - 11am - able to go back to sleep for awhile!

*wake w/ racing heart, anxiety*

11am-1pm: Pick at some eggs, GF toast w/ almond butter, avocado *have little appetite*

*continue to feel orthostatic/racing heart/anxious*

?pm: Took fish oil (700mg EPA + 240 DHA) and primrose oil (1000mg)

3:30pm: Homemade chicken soup (ch broth, carrots, celery, wild rice, chicken)

*feel a bit better*

4 - 6pm: driving to/attending doc appt; suggested either more salt tabs + water OR adding a steroid to manage orthostasis (turned down last option; not sure if I'll add more salt tabs, just a PRN right now)

Drink a lot of water, feel better

6:30pm: fish oil (700mg EPA + 240 DHA) and primrose oil (500mg)

6:30 - 9pm: Help w/ dinner, put B to bed

*feeling okay mood-wise, but stomach hurts*

10pm: late dinner (GF pasta w/ pesto and chicken, field green salad, some leftover arroz con pollo)

*stomach really starts to feel awful; take some apple cider vinegar*

11pm: 0.5mg Klonopin, 270mg gabapentin, 5mg melatonin (melatonin + vitamin B6 combo pill)

11:30: epsom salt bath

*feel a bit better, start to get sleepy*

-->12:30/1am: read until lights out

7am: up w/ B *stomach REALLY hurts; gas pain*

8am: take small (15mL) amt of Simethicone

*stomach pain eases a BIT*

--> 9:30am can't really eat breakfast (stomach pain); head to doc appt.

 

NOTES

- I felt better towards the end of the day (as has been typical over the last week)

- Mood was overall less depressed today (was able to laugh a couple of times), but restlessness and general feeling of physical + mental dysregulation really high

- Wonder if the arroz con pollo was sitting out too long before I decided to eat it --> stomach issues?

- Plan to try the low-histamine diet soon, while holding on other things

[NorthStar]

17 minutes ago, Sassenach said:

 

Ho Northstar

 

I hope we are not sending mixed messages.

I have a wave going on now so cannot sort the info above.

Will get back to you tomorrow.

Keep it steady

Sassenach

Oh - no worries at all. Like everyone else, I'm discombobulated and trying to balance complying with site rules w/ being sensitive to most input while trying to heal.

Hugs to through the wave! I'm there with ya.

[Sassenach]

4 minutes ago, NorthStar said:

discombobulated

If you can spell this, better than at mo.

[NorthStar]

4 minutes ago, Sassenach said:

If you can spell this, better than at mo.

Googled it.😔

[Sassenach]

Cheat😁

Have a good day.

Hope back on track tomorrow.

[Altostrata]

Strongly recommend you try the exclusion diet and not eat ANY leftovers for a few weeks.

[NorthStar]

1 hour ago, Altostrata said:

Strongly recommend you try the exclusion diet and not eat ANY leftovers for a few weeks.

@Altostrata Thank you so much! We're very much on the same page; I couldn't eat much of anything today due to an upset stomach and oddly felt much better mood and akathisia-wise. TWO clarifying questions, if that's okay:

1) Do "leftovers" just constitute cooked leftovers? Or am I able to drink an open container of flaxseed milk or, say, 1/2 an apple I've put in the fridge?

2) I've read-up on all the elimination diets you've mentioned: general, low-histamine, SCD, GAPS, FODMAPS. Is there a particular one you'd recommend, based on the information I've provided thus far? Some of them allow certain foods others disallow.

 

I remember, now, that the 2-3 years after high school (just after I went off ADs, actually, and had had mono, shingles, and some other immunes issues), I felt better eliminating food and not eating for a day or two here and there. I did an elimination diet just for gluten (which I've since avoided) and dairy (which I avoid 75% of the time), but probably didn't go far enough.

 

Thank you!

[NorthStar]

3 hours ago, NorthStar said:

@Altostrata Thank you so much! We're very much on the same page; I couldn't eat much of anything today due to an upset stomach and oddly felt much better mood and akathisia-wise. TWO clarifying questions, if that's okay:

1) Do "leftovers" just constitute cooked leftovers? Or am I able to drink an open container of flaxseed milk or, say, 1/2 an apple I've put in the fridge?

2) I've read-up on all the elimination diets you've mentioned: general, low-histamine, SCD, GAPS, FODMAPS. Is there a particular one you'd recommend, based on the information I've provided thus far? Some of them allow certain foods others disallow.

 

I remember, now, that the 2-3 years after high school (just after I went off ADs, actually, and had had mono, shingles, and some other immunes issues), I felt better eliminating food and not eating for a day or two here and there. I did an elimination diet just for gluten (which I've since avoided) and dairy (which I avoid 75% of the time), but probably didn't go far enough.

 

Thank you!

 

Nevermind on the above, @Altostrata. If it makes sense to y'all, based on what I've been eating the last 1.5 months (which seems to be higher histamine), and @Altostrata's suggestion to avoid leftovers and where that might stem from, I'm planning to do a cross-section of the following diets, while holding steady on supplements and meds for now (though, if I continue to have a suspected reaction, I'll drop the probiotics):

- low histamine (per @GiaK's suggestions, I've followed the Low Histamine Chef, though I can't comply with everything she recommends if I'm to follow the second diet)

- something in between the Level 2 'FODMAP' diet and Level 'Few Foods Diet' 3 diet outlined here (thanks, UW!)

 

This means I'll be forgoing the kombucha I've been relying on to settling my stomach, but hopefully this won't be so necessary anymore.

 

I'm starting tomorrow. My primary fear here is weight loss since I'm already struggling to gain weight and eat enough (something that's been an issue since the summer/fall - made worse and worse by all the meds). I plan on using a lot of coconut milk, olive oil, and coconut oil; hope that helps.

[Sassenach]

Hi Northstar

 

See you are being well looked after by the boss.

Hope you are slowly getting to grips with your issues.

It will be slow, but follow good advice and you will get there.

 

Sassenach

[Altostrata]

I'd eliminate histamine foods if I were you.

 

On 7/16/2019 at 6:31 PM, NorthStar said:

1) Do "leftovers" just constitute cooked leftovers? Or am I able to drink an open container of flaxseed milk or, say, 1/2 an apple I've put in the fridge?

 

Anything containing animal protein might increase in histamines as the protein degrades. There are high-histamine fruits and vegetables, you'll have to look a the histamine intolerance charts.

 

Flax milk and apple are probably neutral leftovers.

[NorthStar]

1 hour ago, Altostrata said:

I'd eliminate histamine foods if I were you.

 

 

Anything containing animal protein might increase in histamines as the protein degrades. There are high-histamine fruits and vegetables, you'll have to look a the histamine intolerance charts.

 

Flax milk and apple are probably neutral leftovers.

 

Thanks, @Altostrata. I have eliminated them - and apple cider vinegar, as I suddenly had clogged ears after having some today (always a tiny amt in water, but still). I am using about 3 low-histamine resources I've found on this site.

 

[NorthStar]

July 17, 2019 Notes

I'm feeling particularly wretched today (been a rough last 2-3 days). Something set my stomach off over the weekend and it's just lingered longer than normal. I realize now that this has been a pattern for me about mid-cycle since May - although twice I suspected it was something I had eaten (I'm GF, and suspected cross-contamination or outright contamination from 2 meals I didn't prepare); maybe ovulation is making my postpartum, post (most) psych-meds stomach topsy-turvy - who knows.

 

I feel particularly low-appetite, foggy-headed/fumbling, nauseous, achy - all over the last 2-3 days. It's also been REALLY hot and REALLY humid and we don't have central air (or any A/C in most of the house), and that's not helping. I've missed some notes, but here's what I can piece together for today, starting low-histamine (the restrictions around food forms and food prep are TOUGH), FODMAP elimination diet:

- 11pm? 12am? took might meds: 270mg gabapentin, 0.5 Klonopin

- went to bed LATE (2:30am?) in part due to upset stomach

- early-mid-morning - woke one and off

*grew increasingly anxious, heart racing --> feels like morning cortisol*

- 11am - out of bed (after avoiding it)

*heart racing, dizzy, anxious*

- 12ish - breakfast/lunch of: not-so-very-tasty smoothie (kale + whole can full-fat coconut milk + apple + carrot juice), salmon, quinoa, olive oil, salt (looking at some of the low-histamine diet resources, the salmon might have been a mistake), green tea w/ shredded ginger

*feel nauseous, anxious, heart pounding, generally off*

--> probiotics, vitamin D (2,000 IUs), fish oil, primrose oil (1,000 mg)

*continue to feel off, dysregulated*

- 1:30 - appt

*still feeling awful - upset stomach, woozy, headache, also itchy skin (been an issue part of spring and much of summer)*

- 6pm? - munch on 2 rice cakes

- 7pm - entire small cucumber

- 7:30pm? - 2ish tsp apple cider vinegar in water for stomach

*still feel off + sneezing, ears start to clog*

- 9:30pm - dinner of: brown rice and quinoa pasta, chicken breast (previously frozen raw), shredded beets, cucumber, arugula, baby lettuce, olive oil, salt

*headache, body aches, dizzy/woozy, some racing heart, REALLY foggy-headed*

- 10:30pm - night meds: 270 gabapentin, 0.5 Klonopin

- 10:30pm - epsom salt bath

*feeling a bit more relaxed, steady, BUT still woozy, nauseous, generally off, sneezing/stuffy nose*

 

And here we are.

 

Overall, the restlessness is better, but that's it for today. I feel overall more ill (achy, nauseous, low-appetite, no energy, foggy head) - which I understand is not atypical for the start of an elimination diet, but it's ROUGH. I'm still trying to decide how strict I want to be re: fruits and nuts. I need to be eating more calories, but am having a hard time. I also completely forgot my afternoon fish oil and primrose oil.

 

Blech. Off to put a cold washcloth on my head and have some ginger tea.

[NorthStar]

Today was a bit better akathisia-wise, but my stomach remains achy, gassy, and generally really sour.

 

Couldn't fall asleep until 2am-ish last night; achy legs, sour stomach

6:30am ---> awake on and off until 10:40am

*anxious, but less so than day prior*

11am-12pm - diluted green tea w/ freshly shredded ginger

*feeling good, even-keel*

1pm - brown rice + freshly-cooked-from-raw chicken breast AND w/ meal vitamin D (2,000 IU) + fish oil + 1,000 mg ev primrose oil + 2 probiotics (Lactobacillus GG + bifido. longum)

* feel a bit nauseous, jittery, racing heart *

2pm - acupuncture

* feel a bit better; still really anxious, uncomfortable*

4:30pm - smoothie (carrot juice, whole can of full-fat coconut milk, kale, blueberries)

*ears clog, feels really jittery, gassy*

5:30 - 6:30pm - walk outside

*feel a bit better*

7:30pm - fish oil + 500mg ev primrose oil

*stomach starts to hurt again*

8:45pm - Dinner (freshly-cooked-from-raw chicken breast, brown rice, veggie hash - beets, sweet potato, parsnips, zucchini + olive oil, salt, pepper)

By 9:15pm *skin itchy, throat swollen, ears swollen, achy stomach*

By 10:30pm *achy stomach, bloating, acid reflux*

10:30pm - Night meds: 0.5mg Klonopin + 270mg gabapentin

By 11:30pm *stomach very achy, really bloated, acid reflux*

11:45pm - take small amt of simethicone + milk of magnesia

11:45pm - Night-time yoga, stretching + ginger tea

 

Notes

- The good: My lips are peeling less than usual today (often a sign of a food allergy). And, I think there's slightly less restlessness overall - though dampened by added fogginess, dizziness.

- The bad/frustrating: I haven't had reflux in many weeks or months, so it's frustrating it's back. In the last 3 months, it's rare that a stomach issue would last this long.

- Question: I'm starting to wonder if cutting the probiotics (for now) isn't a good idea; the ingredients on one include 'inulin,' which is a FODMAP no-no. Another has sucrose and other additives. Or, would it make sense to cut all supps and then slowly reintroduce later into the diet, one-by-one?

 

[NorthStar]

11 hours ago, NorthStar said:

8:45pm - Dinner (freshly-cooked-from-raw chicken breast, brown rice, veggie hash - beets, sweet potato, parsnips, zucchini + olive oil, salt, pepper)

By 9:15pm *skin itchy, throat swollen, ears swollen, achy stomach*

By 10:30pm *achy stomach, bloating, acid reflux*

10:30pm - Night meds: 0.5mg Klonopin + 270mg gabapentin

By 11:30pm *stomach very achy, really bloated, acid reflux*

11:45pm - take small amt of simethicone + milk of magnesia

11:45pm - Night-time yoga, stretching + ginger tea

*stomach worsens*

12:30am - Take 125mg simethicone + hot pad

*stomach even worse?*

1:30am - take 30 mL Pepto Bismol

1:30am - epsom salt bath

* stomach settles a bit *

3am - fall asleep

5:45am - up w/ sick kiddo (teething + fever - different symptoms than me, but possibly related?)

*really anxious, upset stomach*

8:30 - 10:30am - rest in bed

*really shaky w/ slight tremor in hand, restless, very gassy + sour stomach, pins + needles in feet*

11:30am - sipping fresh ginger tea

 

I'm not sure what is going on with my stomach, and I'm sure some of he OTC stomach meds exacerbated my symptoms this morning though I wasn't sure what else to do. It feels like I have food poisoning or ate gluten, but neither is very likely (the latter is near-impossible) given I've cooked every meal from scratch the last 2-3 days and used a meat thermometer. Maybe the gabapentin is bothering my stomach, again? It's an odd start to the elimination diet. Oof - I'm exhausted. Anyway - onward.

[Altostrata]

On 7/17/2019 at 9:36 PM, NorthStar said:

*grew increasingly anxious, heart racing --> feels like morning cortisol*

 

Need to know what time of day this happens.

 

20 hours ago, NorthStar said:

2 probiotics (Lactobacillus GG + bifido. longum)

 

I would stop all probiotics if I were you. Many people with histamine intolerance react badly to all probiotics.

 

20 hours ago, NorthStar said:

By 9:15pm *skin itchy, throat swollen, ears swollen, achy stomach*

 

This indicates you are truly allergic to something you took earlier. If I were you, I would stop taking fish oil and evening primrose oil.

 

It sounds like your gut is very irritated. You might want to have something like chicken broth and rice with a little cooked chicken for a while. It's okay to have just broth for a few days, let it settle down.

 

It's possible you are also sensitive to salicylates in vegetables.

 

For the low histamine and FODMAP diets, it's easier to make a list of allowed foods than to remember all the exclusions.

[NorthStar]

4 minutes ago, Altostrata said:

On 7/17/2019 at 11:36 PM, NorthStar said:

*grew increasingly anxious, heart racing --> feels like morning cortisol*

 

Need to know what time of day this happens.

re: the morning cortisol, growing anxiety - as the sun comes up (on bad days) or anywhere btw 7-10am. I do use a fan, A/C, light-blocking curtains, and all those help.

 

5 minutes ago, Altostrata said:

I would stop all probiotics if I were you. Many people with histamine intolerance react badly to all probiotics.

 

Thank you so much for the advice, @Altostrata. I did that today (no difference so far, but just the first day), and will continue.

 

6 minutes ago, Altostrata said:

This indicates you are truly allergic to something you took earlier. If I were you, I would stop taking fish oil and evening primrose oil.

 

It sounds like your gut is very irritated. You might want to have something like chicken broth and rice with a little cooked chicken for a while. It's okay to have just broth for a few days, let it settle down.

 

It's possible you are also sensitive to salicylates in vegetables.

 

For the low histamine and FODMAP diets, it's easier to make a list of allowed foods than to remember all the exclusions.

Re: fish oil + evening primrose. Agree. Will stop for now. I'm also going to stop eating coconut just to see.

 

Yeah, it's really irritated. The blandest foods are causing issues. My best guess is, due to the med merry-go-round of the last 9 mo, and my predisposition to gastro. issues, something over the weekend poured some gasoline on a kindling fire and it's grown worse. And I just can't seem to tolerate any OTC stomach or allergy meds. This happened in May and things improved only after I started drinking some kombucha and apple cider vinegar (just a bit, daily); I took that regimen too far and it's possible I upset the histamine balance in my system [further]; that would be a possible explanation for the difficult last 6 weeks. And thank you for the broth suggestion; I get confused as to whether that's permissible with this diet, but I trust your advice and know you've been through the diet before.

 

I have a list of 'okay' foods on the fridge  . Mercifully, it looks like there's quite a bit of overlap btw the low-salicylates and low-histamine lists! I hope that, once things calm down and I've done a bit of 'challenging,' I can use the recipes recommended by the Low Histamine Chef so I don't have to think so much.

 

Thanks, again, @Altostrata. I'll do my best to update over the next couple of days, but we have a sick kiddo (and mom) so it will be tougher than normal.

[NorthStar]

A messy check-in to reflect a messy/difficult last couple of days:

Friday, July 19 (NO fish oil, probiotics, evening primrose oil today)

On 7/19/2019 at 11:35 AM, NorthStar said:

3am - fall asleep

5:45am - up w/ sick kiddo (teething + fever - different symptoms than me, but possibly related?)

*really anxious, upset stomach*

8:30 - 10:30am - rest in bed

*really shaky w/ slight tremor in hand, restless, very gassy + sour stomach, pins + needles in feet*

11:30am - sipping fresh ginger tea

*Anxiety really high all day, racing heart, feeling generally dysregulated, stomach still really achy*

Afternoon - ran errands

4pm-ish - smoothie w/ blueberries, almond milk, kale

*anxiety a bit higher*

5:30 - 7:30pm - at friends' w/ family, really restless and anxious, and disoriented (had to leave early)

--> 6:30pm-ish - dinner w/ chicken breast, asparagus, a bit of sliced potatoes, lettuce greens + cucumber, a few blueberries

*had to force myself to eat, really anxious w/ upset stomach*

7:30 - 9:30pm - chores, B in bed, short walk

*feel better*

10pm - a small portion of of chicken broth w/ some veggies (Carrots, parsnips, zucchini,  beets, sw potato), rice + ginger tea

*feel even better (note: sweat is really acrid today), but have head ache*

10:30pm - evening meds + supps (0.5mg Klonopin, 270mg gabapentin, 5mg melatonin w/ B6, 400mg magnesium glycinate) + a bit of Acetaminophen for headache, jaw ache

10:30pm - epsom salt bath

*feeling more relaxed*

11:00pm - evening yoga + relaxation exercises 

11:30pm - in bed, watch movie w/ blue-light-blocking glasses

1am - lights out

*brief loud ringing in ears before fell asleep (have had tinnitus for months, but this was particularly loud, weird)*

Sat, July 20

early morning - woke, tossed + turned, back to sleep

7 or 8am - woke again, back to sleep

9am-ish - up in bed

*really 'buzzy', akathisia bad, racing heart*

9:45am - out of bed

10:30am - ginger tea

*still have racing heart, some *

12pm - chicken broth w/ freshly cooked chicken

By 12:30pm - *finally calming down, feeling more even-keel*

 

Notes

- Acute stomach pain is improving

- No more fish oil, evening primrose oil, or probiotics for awhile

- No lip peeling as of today (Saturday)

- Waking anxiety/restlessness rush has been worse last 3 days

[Altostrata]

The picture is becoming clearer. It would be most helpful if you'd post at least 24 hours of notes at a time, so we can see the entire daily drug schedule and symptom pattern.

 

It appears that the nightly Klonopin may be wearing off by the morning and causing rebound symptoms. Generally, we recommend dividing the dose to maintain steady coverage. @Shep will help you with this.

 

I am concerned about the batch of drugs you take at night. Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php and copy and paste the results or a link to them in this topic.

 

You probably have food sensitivities plus allergies to something, maybe fish oil or something else. After everything settles down with dietary restrictions and no supplements for a while, you can introduce one at a time to see what's causing your reactions. That's the exclusion principle.

 

If the lining of your gut has been irritated by something, it may take a while for it to settle down. Please research histamine level and salicylate content of almond milk. You might be better off with hemp milk or oat milk.

 

See https://www.sjhc.london.on.ca/sites/default/files/salicylate_free_diet_food_guide.pdf

 

https://www.drugs.com/article/low-salicylate-diet.html

 

You might wish to join an online support source specifically for food sensitivities, it's not our focus, though many people here seem to develop them, so we provide basic information.
 

[NorthStar]

50 minutes ago, Altostrata said:

The picture is becoming clearer. It would be most helpful if you'd post at least 24 hours of notes at a time, so we can see the entire daily drug schedule and symptom pattern.

Thanks @Altostrata. I will try to do that. I get certain periods of the day when I am available to post, but it's been spotty; I apologize for the inevitable confusion. I'll strive to do one full day at a time.

 

51 minutes ago, Altostrata said:

It appears that the nightly Klonopin may be wearing off by the morning and causing rebound symptoms. Generally, we recommend dividing the dose to maintain steady coverage. @Shep will help you with this.

Ok. That makes sense. Thanks in advance, @Shep. So, 0.25mg morning and then night, or 0.125mg morning and 0.375 night might be better?

 

54 minutes ago, Altostrata said:

I am concerned about the batch of drugs you take at night. Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php and copy and paste the results or a link to them in this topic.

Me, too. It was how the gabapentin and Klonopin were prescribed - with the idea that I'd be able to 'taper off the Kloponin pretty quickly' and keep only the gabapentin on board, according to the hospital doc. I left the hospital (late Feb) taking 1200mg gabapentin/day (300 2x/day and 600/night). I was immediately severely constipated, and within 3 weeks I had developed terrible acid reflux - most acute immediately taking gabapentin. It also didn't feel particularly helpful. So, the IOP doc suggested I cut the whole daily dose in half - 200mg 2x/day and 300mg/night, and the stomach issues settled. Most recently, though (just before join SA), I tapered to 0mg/day and 300-->270mg/night (since it was starting to cause some physical dysregulation after taking it). I have been tapering the Klonopin since the hospitalization (still am, though on a hold right now); I tapered completely off daytime doses back in late April, I believe.

 

I can't believe this, given both drugs work on GABA receptors and have been around awhile, but the database reads "No results found in our database - however, this does not necessarily mean no interactions exist. Always consult with your doctor or pharmacist." 😕

 

Any advice on how to proceed? 

 

1 hour ago, Altostrata said:

You probably have food sensitivities plus allergies to something, maybe fish oil or something else. After everything settles down with dietary restrictions and no supplements for a while, you can introduce one at a time to see what's causing your reactions. That's the exclusion principle.

 

If the lining of your gut has been irritated by something, it may take a while for it to settle down. Please research histamine level and salicylate content of almond milk. You might be better off with hemp milk or oat milk.

 

See https://www.sjhc.london.on.ca/sites/default/files/salicylate_free_diet_food_guide.pdf

 

https://www.drugs.com/article/low-salicylate-diet.html

 

You might wish to join an online support source specifically for food sensitivities, it's not our focus, though many people here seem to develop them, so we provide basic information.

 

Thank you, again. This all makes sense. I know that when my digestive system is irritated, other allergies are more acute. Re: the almond milk, it looks like most recourses say almonds are moderate-to-high in histamine, (and high in  but otherwise suggest almond milk, which is confounding (https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf). Better to just eliminate it for now. Something is going on with food; over the last 6-8 weeks at least, my anxiety had spiked at least 50% of the time immediately after - or as - I eat.

 

Thank you, again, @Altostrata! And let me know if you need any more information from me, @Shep.

[NorthStar]

Saturday, July 20, 2019 (yesterday - and before more of previous most)

early morning - woke, tossed + turned, back to sleep

7 or 8am - woke again, back to sleep

9am-ish - up in bed

*really 'buzzy', akathisia bad, racing heart*

9:45am - out of bed

*bad lower back pain, anxiety*

10:30am - ginger tea + hot pad on back

*still have racing heart, some restlessness, appetite low*

12pm - chicken broth w/ freshly cooked chicken

By 12:30pm - *finally calming down, feeling more even-keel*

1pm - have a bit of a rice cake

*racing heart, feel dysregulated again (really?)*

1:30pm - push through, trip to museum w/ husband + son

*feel awful most of time; lower back aches esp. around kidneys*

4:30pm - 2 'paleo' waffles (tigernut flour and coconut flour)

*feel a bit more settled*

5pm - attempt smoothie (blueberries, almond milk, kale, a splash of carrot juice)

*after a few sips, my anxiety surges - it was utterly bizarre and just awful (again, really? this strong of a reaction is new); I stopped drinking it - and will avoid almond milk now*

6-8pm - Pace for awhile (akathisia really bad), finally settle down a bit, go for a walk

*feel just a bit better*

8-9pm - Store

9-10pm - dinner: some chicken broth, chicken, some veggies

*still feeling dysregulated, shaky, really anxious, stomach upset*

11pm - meds: 0.5mg Klonopin, 270mg gabapentin, 400mg magnesium glycinate, 5mg melatonin (+10mg B6)

*verrrrry slowly calm down*

11pm - epsom salt bath

11:30 - 1am - watching tv, then reading, in bed

1am - sleep

NOTE: Woke up this morning (Sunday) feeling very anxious and shaky w/ racing heart, bad akathisia again this morning. Will write post tomorrow in keeping with full day post plan.

 

Notes/Inquiries

- Any thoughts on splitting Kloponin and/or gabapentin dose?

- While this particular stretch has lasted longer than those in the past 2 months, I've noticed stomach issues spike in tandem w/ akathisia around the time I ovulate (akathisia also spikes at the start of my cycle) - since April or May. There's probably nothing to be done about it, but it's something to be aware of.

- I've been losing more weight, which isn't a good thing. I'm struggling to eat enough right now due to the stomach upset and restricted diet. I'll keep at it, with the hope I can 'challenge' some foods back in soon. Sometimes just eating too much (no matter how innocuous the food) causes upset stomach and anxiety, so smaller meals are probably on the agenda for awhile, here.

- Today (Sunday) has been a 'I feel like I'm not going to make it through this' kind of a day. It's just been such a deterioration over the last 6 weeks after what I thought was improvement in late April and May. Windows and waves, I know. I just needed to declare it somewhere.

- Thank you so much, again, for this space.

[Altostrata]

I think you should eat more of those paleo waffles, maybe every meal for a while.

 

You can start separating gabapentin from Klonopin by taking gabapentin an hour earlier each day.

 

@Shep will respond on Monday.

[NorthStar]

50 minutes ago, Altostrata said:

I think you should eat more of those paleo waffles, maybe every meal for a while.

 

You can start separating gabapentin from Klonopin by taking gabapentin an hour earlier each day.

 

@Shep will respond on Monday.

Will do (as supply and budget allows), and will do (I'll be sure to take not of my reaction to one and the added other).

 

Thank you so much!

[Shep]

15 hours ago, Altostrata said:

You can start separating gabapentin from Klonopin by taking gabapentin an hour earlier each day.

 

@Shep will respond on Monday.

 

14 hours ago, NorthStar said:

Will do (as supply and budget allows), and will do (I'll be sure to take not of my reaction to one and the added other).

 

 

Northstar, I'm following your thread, so as you post daily, we can tweak your gabapentin / klonopin schedule.

 

It can take awhile for an elimination diet to show results. I also went on an elimination diet during withdrawal and I went Paleo (I had been a vegetarian for over 30 years) and it took awhile to feel the benefit. But it was well worth it. 

 

If the Paleo waffles are too expense, simply having a high-protein / low carb / low sugar meal or snack can work just fine. Make sure the food is not high in histamine and any other stipulation you have for your elimination diet. 

[NorthStar]

3 hours ago, Shep said:

Northstar, I'm following your thread, so as you post daily, we can tweak your gabapentin / klonopin schedule.

 

Thanks so much, @Shep. I jumped the gun and made the attempt to split it yesterday (see notes in next post, below). Everything was so messy yesterday, but I want to be honest. Sounds like you think I should go back to all meds at night (with hour separation btw Klonopin and Gabapentin) for now?

 

3 hours ago, Shep said:

It can take awhile for an elimination diet to show results. I also went on an elimination diet during withdrawal and I went Paleo (I had been a vegetarian for over 30 years) and it took awhile to feel the benefit. But it was well worth it. 

Thanks, Shep! I'm going to ask the question I'm not supposed to ask: do you remember how long it too for you to feel better after starting the diet? And how long you maintained the diet before adding in any other foods?

 

Thank you, again.

 

 

[Sassenach]

Hi Northstar.

 

You are in good hands.

When we get even the tiniest bit better we forget we felt worse yesterday.

It will take a while to unwind all that has happened, but you will get there.

 

Sassenach

[NorthStar]

Okay. Yesterday (Sunday, July 22nd) was a bad day. And I messed around w/ timing of dosages - jumping the gun before hearing any thoughts from the Mods/Admins. I am sorry, for myself as much as anyone.

 

I am continuing to learn how sensitive my system is right now - to OTC meds, to meds I've stopped taking or changes in meds I am taking, to supplements, to foods, to environmental allergens, to stress. I've always been sensitive, something heightened postpartum, but this is a whole new level. From the reading the site, I understand this is typical for withdrawal. Clearly, I need to be more careful.

 

So - here are my notes from yesterday:

Some waking in the night

6am? – Woke, nervous, fell back into light sleep

7-9am – Fitful, nervous sleep

9:30am – Out of bed

*Racing heart, anxious, upset stomach*

10am – Freshly-cooked chicken, chicken broth, ginger tea, paleo waffle

*Feel anxious, racing heart, physically dysregulated*

Started splitting Klonopin dose across the day (I know… I’m sorry; I’ll stop this after today unless you think it’s a good idea; I jumped the gun)

10:30am – 0.125mg Klonopin (plan to take the remaining 0.375mg at night)

10:30am-1pm – Drive to, attend birthday brunch for extended family member (difficult b/c I felt so anxious and restless); eat salad of chicken breast, lettuce, some olive oil

*Feel so dysregulated – surprised, given Klonopin in the morning – racing heart, really restless, uncomfortable, akathisia is bad; keep getting up to visit bathroom or walk*

~12:30pm – Heart racing, I take 20mg Propranolol (mistake, should have waited in out; first time taking any Propranolol in ~2 weeks after abrupt and inconsistent taper)

*By 1:30pm, heart rate seems to have settled, but restlessness isn’t much better; feeling just awful*

2pm – Back at home, I try 100mg gabapentin (I know… I thought I could split it w/ night meds)

*No change w/in the hour; if anything, I’m worse*

By 3pm – Visiting family

3:30pm – Take ~25mg B6

*Start feeling better*

5:30pm – Walk outside with B and husband

*Ears start to close-up, sniffly, itchy – I realize now that this has been happening during every outdoor walk recently; but feel less dysregulated*

7pm – Store

8-10pm – Chores, eventually dinner of 2 paleo waffles w/ apple sauce (feel ok at first), then grilled fennel, chicken, chicken broth, veggies (sw potato, beet, parsnips, carrots)

*Start to have pounding heart, bloating, feel really anxious and dysregulated*

11pm – Night meds (0.375mg Klonopin, 270mg gabapentin – forgot about 100mg dose earlier in the day – 5mg melatonin+B6, magnesium)

*Feeling just awful – so restless and dysregulated*

12am – Epsom salt bath

12:30am – Night yoga/stretching

*Start to feel less restless and sleepy, head heavy*

12:45-2am – In bed, reading

*Head heavy, tired*

~2am – Asleep 

[NorthStar]

3 minutes ago, Sassenach said:

Hi Northstar.

 

You are in good hands.

When we get even the tiniest bit better we forget we felt worse yesterday.

It will take a while to unwind all that has happened, but you will get there.

 

Sassenach

 

Thank you so much for the affirmation, @Sassenach. Means the world. I need to be better at patience and mindfulness. How are you? How's Scotland?

[Sassenach]

22 minutes ago, NorthStar said:

Heart racing, I take 20mg Propranolol (mistake, should have waited in out; first time taking any Propranolol in ~2 weeks after abrupt and inconsistent taper)

 

24 minutes ago, NorthStar said:

Back at home, I try 100mg gabapentin (I know… I thought I could split it w/ night meds)

Unless @Shep feels otherwise I suggest you make and print, or put on phone alarm a daily drug schedule.

When we are feeling bad it's natural to feel the need to be proactive, however it rarely turns out to be the right decision.

I have not been around for a few days and I can see slight improvements from a week ago.

Stick at it and momemtum increases.

You had so many issues but they will resolve with patience.

Sassenach

[NorthStar]

QUESTION:

Back in June(ish), I had to switch pharmacies due to insurance issues. When that happened, the form of 0.5mg clonazepam/Klonopin I took changed; the pill went from a flat cylindrical, orange, uncoated pill --> a rounded flat, bright pink, coated pill. It was around this time that I made many other changes (ended my too-quick taper of Seroquel, started phasing out propranolol as my thyroid went from hyper- to borderline-hypo-, started phasing out the daytime gabapentin). I also had a day in early June (just after completing my Seroquel taper) when I had two partial glasses of white wine when out with a friend, and instantly felt my anxiety and physical dysregulation spike (I haven't had a drink since - and won't). Since early June, my stomach has grown worse and the orthostasis has grown worse. It's really been just this last 2 weeks that I feel an acute heart pounding after I eat (I took my BP after eating lunch today and it's 79/55 with a HR of 95 - sitting; I was having trouble breathing).

 

I might paste this elsewhere in the forum, as well, to see if others have had issues switching to another form of a pill. I've emailed my pdoc, though I'm not expecting much (if any) insight into the switch, and the increasing gastro - cardio issues.

[Altostrata]

Yes, people sometimes feel the difference in brands of pills, but you were making a lot of other changes simultaneously, so hard to tell what causes what.

 

Please get your daily dosing schedule in hand. Not sure when you're taking Klonopin and gabapentin now. This has to get regular day to day.

 

Please do not change Klonopin and gabapentin at the same time. Now that you've embarked on changing Klonopin, please complete the schedule change in consultation with @Shep

[NorthStar]

Agreed.

 

Yesterday was the only day I switched things. So, for now, I'm back to taking 0.5mg Klonopin and 270mg gabapentin at night only. If @Shep suggests a switch, I'll do that. It sounds like we're holding for now.

 

Edited July 23, 2019 by ChessieCat
removed quote

[Shep]

On 7/20/2019 at 6:04 PM, Altostrata said:

It appears that the nightly Klonopin may be wearing off by the morning and causing rebound symptoms. Generally, we recommend dividing the dose to maintain steady coverage. @Shep will help you with this.

 

@NorthStar With the recent change in that last drug and symptoms journal, I'm a bit confused when you're taking your drugs. 

 

What times are you taking the Klonopin and Gabapentin? 

 

Please keep posting your drug and symptoms journal. It's possible you're getting some interdose withdrawal from the Klonopin and spacing it out may help. We recommend dividing the dose up and then gradually moving it an hour a day until it's at the time you wish to take it. So for example, if you wish to take the Klonopin 12 hours apart, it will take 12 days to get it moved at an hour a day. 

 

If Klonopin is helping with sleep, you may wish to take the bulk of it at night. 

 

Please post your thoughts. 

 

Also, I remember we discussed the high dose of melatonin earlier, and I'm wondering if it's causing some of your stomach problems. This can be a side effect in some people. So at some point, you may want to go to a lower dose.