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NorthStar

Notes for Monday, July 22nd, 2019

Fell asleep at around 2am

Slept fairly well

8am-10am – Tossing and turning

Up at 10am

*Racing heart, anxiety, ovulation cramping, upset stomach*

12pm – 2 paleo waffles + apple sauce

*By 12:30pm – racing, pounding heart and upset stomach, bloating; apply hot water bottle to help w/ lower back pain and stomach pain*

*Feel awful, like a panic attack – heart pounding, tremor, trouble breathing (upset stomach and bloating, too); lasts 2 hours*

2:30pm – Had the following: Chicken broth, freshly-cooked chicken breast. 1 ‘buffered electrolyte’ pill (does include 100 IU of vitamin D, along w/ electrolytes), ½ NUUN salt tab (does include vit C and flavoring along w/electrolytes - it's difficult to find electrolytes that aren't 'fortified')

3pm – Smoothie (blueberries, hemp milk - fortified, arugula)

*By 3:15 I started feeling better*

*By 4:30 I start feeling awful again – racing heart, really upset stomach, bloating*

5pm – Park w/ family; walk outside

*Feel just awful – heart racing, severe bloating, upset stomach, trouble breathing*

7pm – Errands (helps distract me from physical dysregulation)

8:30pm – Smoothie (hemp milk, blueberries)

*By 9pm Racing heart, restlessness, significant autonomic dysregulation*

- First day separating gabapentin from Klonopin by 1 hr-

9:30pm – 270mg gabapentin

10pm – Went for walk to help w/ racing heart and restlessness

*Start feeling a little sleepy, but still having issues breathing, shaky, upset stomach w/ bloating*

10:30pm – 0.5mg Klonopin + 5mg melatonin (w/ the added 10mg B6)

11pm – Epsom salt bath

*start to feel more steady*

12am – In bed

~1:30am – Asleep Notes

 

Notes/Inquiries (sorry for the length)

- The last 6 weeks (right before I found and joined SA) have been increasingly rough physically and mentally (changes at and during that time: tapered off Seroquel in early June, tapered my 200-400mg daytime gabapentin during mid-June/early-July, went off propranolol w/out much taper as hyperthyroid resolved and turned more hypo- in mid-May to early-July, changed brand of gabapentin and klonopin as pharmacy changed, sometime last month, lowered melatonin to 7.5mg then to 5mg over course of July). I know we can't know what's what as a result.

- The last 10 days have been really rough, with the onset of this stomach issue that I can't find a point source for: possibly changes in my cycle (I've read that such changes can spark the release of more histamine), eating a meal I don't normally eat (ground beef, which had been sitting in a slow cooker - tacos) at a friend's house following eating more red mead than usual to increase iron around my period, eating some leftovers that had been sitting out a bit too long? Just a bad stomach bug? I'm not sure.

- The last 3-5 days: The stomach issue, related or not, has been met with some significant POTS-like symptoms. I've been having increasingly low BP and high HRs, as well as trouble breathing, especially after eating. And it really doesn't seem to matter what I eat - be it lettuce, broth, chicken, blueberries, or my original diet; the extent of the POTS/tachycardia changes from meal to meal, but it's grown worse even alongside the elimination diet (I'm not stopping the diet; it's just an observation).

- I think there is absolutely something to the mast cell/histamine issue, especially given how many ferments I had been drinking over the last 6 weeks (I was making my own kombucha, for goodness' sake), and especially when I read up on the hormone-histamine and POTS-mast cell connection (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3537328/ and https://www.fxmedicine.com.au/blog-post/relationship-between-histamine-oestrogen-progesterone-and-cortisol AND https://www.potsuk.org/mcas, etc.).

- I wonder how much of this is permanent (MCAS maybe? or permanent POTS?), how much of this is related to the meds - past and current-, how much is related to the postpartum period, and how much is what is feeling increasingly like acute withdrawal. I know we can't know.

- I am just really struggling. This level of gastrointestinal and cardio symptoms is new and it's really scary.

- Is it smart to 'updose' slightly on the gabapentin and take 100-200mg during the day, and maybe 200mg at night? Should I reinstate some propranolol? I just don't know what's helpful or harmful at this point.

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NorthStar
1 hour ago, Shep said:

@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? 

 

Hi, @Shep. Thank you so much for your thoughtful post. Bear with me here as I respond:

 

I apologize for generating confusion. Sunday was an anomaly in terms of the last 3 weeks. I was having significant akathisia and tachycardia, panicked, and initiated the Klonopin dose split and added propranolol (which I've been off for 3 weeks after a quick taper due to my thyroid moving from hyper- to hypo-) and gabapentin. Here is my typical med regimen from the past 3 weeks:

- 300mg --> 270mg gabapentin + 0.5mg Klonopin + 5mg melatonin (w/ added 10mg B6), taken btw 10 and 11pm (AND 400mg magnesium glycinate)

- no daytime meds

- in addition, there were days (one, I think) in the last week when I needed to use OTC stomach meds, which made stomach issues worse; there were also 3 days when I used acetaminophen due to stomach pain and headache; all these are unusual, too.

- I halted my daytime supplements (2,000IU vitamin D, fish oil, 2 probiotics, 1,500mg evening primrose oil) in the last few days during the elimination diet.

 

2 hours ago, Shep said:

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. 

Will do. I just posted yesterday's.

 

If/when I do this, my preference would be to take the bulk of Klonopin (and gabapentin, if we're splitting both) at night to help protect sleep. For the Klonopin, I am thinking no more than 0.125mg during the day (taken btw 9-10am) and then 0.375mg at night (taken btw 9-10pm). I would also consider 'updosing' on the gabapentin and reinstating it during the day at a smaller dose (maybe 50-100mg 2x/day) and taking 200-270mg at night. I'm ok leaving the propranolol so long as my POTS symptoms are manageable. Clearly, I made way to many med changes too quickly before I joined SA. Of course, I would look forward to stabilizing (I hope!) on this regimen for awhile before initiating a taper.

 

Let me know your thoughts on the above, @Shep. I understand that it will take 12 days to move one med - 24 for both (unless we just updose and reinstate the daytime gabapentin).

 

2 hours ago, Shep said:

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. 

I left the hospital (February) taking 3mg melatonin, and I don't know why I started the 10mg OTC slow-release; this was in April or May. I since reduced to 7.5mg and then to 5mg. I would love to reduce further, but want to try to do one thing at a time. Let me know what you think I should adjust first. I can't tell if the melatonin is related to my stomach issues. It's all rather messy right now; my fault.

 

Thank you so much! I so appreciate your thoughts.

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Altostrata

Were you still taking Klonopin once a day on Monday? I thought you had split the dose. Please clarify your drug schedule.

 

@Shep I am thinking NorthStar can take 0.10mg Klonopin at 10:30 a.m. (if 10:30 p.m. is the normal time for the nighttime dose) and 0.40mg at 10:30 p.m. right off. This will cause a bump up in blood level of Klonopin for this first morning dose, it will smooth out over a week.

 

The morning dose can be gradually increased to 015mg or the minimum effective to bridge those breakthrough symptoms and evening dose reduced accordingly.

 

(NorthStar, please do not make this change until Shep responds. You will have to keep daily notes throughout.)

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NorthStar
2 hours ago, Altostrata said:

Were you still taking Klonopin once a day on Monday? I thought you had split the dose. Please clarify your drug schedule.

 

Hi, @AltostrataI apologize for the confusion. Yes, I am. Sunday was an anomaly. I've included my explanation re: the above to Shep (from earlier today) below:

5 hours ago, NorthStar said:

I apologize for generating confusion. Sunday was an anomaly in terms of the last 3 weeks. I was having significant akathisia and tachycardia, panicked, and initiated the Klonopin dose split and added propranolol (which I've been off for 3 weeks after a quick taper due to my thyroid moving from hyper- to hypo-) and gabapentin. Here is my typical med regimen from the past 3 weeks:

- 300mg --> 270mg gabapentin + 0.5mg Klonopin + 5mg melatonin (w/ added 10mg B6), taken btw 10 and 11pm (AND 400mg magnesium glycinate)

- no daytime meds

- in addition, there were days (one, I think) in the last week when I needed to use OTC stomach meds, which made stomach issues worse; there were also 3 days when I used acetaminophen due to stomach pain and headache; all these are unusual, too.

- I halted my daytime supplements (2,000IU vitamin D, fish oil, 2 probiotics, 1,500mg evening primrose oil) in the last few days during the elimination diet.

 

2 hours ago, Altostrata said:

@Shep I am thinking NorthStar can take 0.10mg Klonopin at 10:30 a.m. (if 10:30 p.m. is the normal time for the nighttime dose) and 0.40mg at 10:30 p.m. right off. This will cause a bump up in blood level of Klonopin for this first morning dose, it will smooth out over a week.

 

The morning dose can be gradually increased to 015mg or the minimum effective to bridge those breakthrough symptoms and evening dose reduced accordingly.

 

(NorthStar, please do not make this change until Shep responds. You will have to keep daily notes throughout.)

Thank you so much. I'll wait to hear from @Shep before initiating. I'll defer to you both, but it would be ideal if I could do 0.125mg morning and 0.375mg at night as it's easiest to cut the the pill into quarters. That said, that change might be too drastic - and I do have a milligram scale I can use. So I'll defer to you both.

 

Thank you!

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NorthStar

(I know I've posted a few times today - see above - in response to others; thank you so much for bearing with me through all this. I wish there were more I could do for others' here right now, and hope to contribute more as I stabilize and learn more.)

 

Again, thank you.

 

Tuesday, July 23, 2019

Sleep a few hours

6-7am? - Woke with B, husband took him

7-9am - Tossed and turned, grew increasingly anxious

9:30am - Out of bed

*Anxious, restless, slightly achy stomach (seemed better?), heart pounding*

~10:30am - Meal of 2 paleo waffles, ginger tea

*POTS/tachycardia bad (took BP - low, with HR increasing by 25 BPM when standing), feel just awful*

~12:15pm - Meal of quinoa, brown rice, some chicken

*Start feeling more grounded, HR seems to settle; but stomach bloating, discomfort*

1-4pm - Appts, errands (drink some ginger tea and water throughout)

*Started feeling high HR/general dysregulation around 2:30pm; stomach aches more w/ bloating*

4pm - Meal of quinoa, sweet potato, steamed broccoli, sautéed kale, water

4:30pm - Buffered electrolyte tab w/ water

5-7pm - Long walk w/ family

*start feeling better, POTS/tachycardia improves; grow weak and dizzy towards the end; stomach still hurts - tender to the touch*

7-9pm - B's dinner, bedtime, etc.

*Stomach pain, reflux*

9:30pm - Meal of chicken thighs (skinned), entire mashed sweet potato, peppermint tea

9:30pm - 270mg Gabapentin

*Feel bloated, dizzy; fewer POTS/tachycardia issues, though; mood really low - just so tired of the acute gastrointestinal issues and low appetite, have a cry*

10-10:30pm - Walk outside

*Feel a bit better, stomach is bloated as ever, though*

10:30pm - 0.5mg Klonopin, 5mg melatonin (+B6)

10:30pm - Epsom salt bath, peppermint tea

11pm - Yoga exercises

12pm - In Bed

*Bloating, stomach pain*

1am - Typing this, about to go to sleep

*Severe bloating, stomach pain*

 

Notes

- I've been reading up on POTS and autonomic dysregulation management and will strive to balance eating enough (a toughy right now) w/ drinking plenty of water. I am gun-shy re: staying hydrated due to my albeit brief history w/ hyponatremia. But I had my electrolytes tested about a month ago - all good.

- I am due for a thyroid check (again, about a month ago - but still).

- I called my pdoc, and she (successfully) called in to switch my two meds back to the brand I was on until very recently. I can pick them up tomorrow. This should remove a variable, at least.

- Stomach issues remain, are possibly worse - which I can't figure out; even when I've had gastrointestinal flare-ups over the past year (mostly during med trials - but two during a steady med list in the last 3 months), they've resolved within a few days (maybe a week) of discontinuing the med (some other side effects like akathisia and palpitations did not, though) OR of whatever food set them off (twice I suspected gluten after eating out). I can't believe how bloated I am. Should I just fast for a day or two? Could the gabapentin be irritating my stomach like it did when I started it (before quickly moving to a lower dose)? While thoughts are more than welcome, I'm not expecting answers to all - or any - of these questions. It might be worth me seeking an online support group for food intolerances/allergies, I just wonder about their knowledge of meds. I'm just processing.

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Shep
6 hours ago, NorthStar said:

I am due for a thyroid check (again, about a month ago - but still).

 

Are you currently taking any thyroid meds? Please let us know if you are.

 

They are very common with people on psych drugs.

 

18 hours ago, Altostrata said:

 

@Shep I am thinking NorthStar can take 0.10mg Klonopin at 10:30 a.m. (if 10:30 p.m. is the normal time for the nighttime dose) and 0.40mg at 10:30 p.m. right off. This will cause a bump up in blood level of Klonopin for this first morning dose, it will smooth out over a week.

 

The morning dose can be gradually increased to 015mg or the minimum effective to bridge those breakthrough symptoms and evening dose reduced accordingly.

 

 

15 hours ago, NorthStar said:

Thank you so much. I'll wait to hear from @Shep before initiating. I'll defer to you both, but it would be ideal if I could do 0.125mg morning and 0.375mg at night as it's easiest to cut the the pill into quarters. That said, that change might be too drastic - and I do have a milligram scale I can use. So I'll defer to you both.

 

The goal is to have twice-a-day Klonopin dosing which allows you to be able to sleep all night, takes care of any breakthrough inter-dose withdrawal during the day, and doesn't make you so groggy during the day you're not able to function. 

 

Are you going to be able to sleep with only .375 mg at night? And will .125 mg in the morning cause grogginess? 

 

If so, you may want to go with Alto's suggestion, especially since you already have the scale. It's not hard to use and once you get into the rhythm, you can make an entire batch to last a week or longer so it's not a daily inconvenience. 

 

We generally recommend moving the dose an hour a day, so it would take 12 days to move the dose 12 hours apart. But Alto's recommendation is a bit different. I think Alto's recommendation is a good one if you go with just taking .10 mg in the morning and moving it all at once. However, if you decide to go with the larger .125 mg morning dose, please only move it an hour a day. If it turns out to be too much, it will be much gentler on the nervous system with a gradual change. This will take 12 days to have it completely moved, but it will give your nervous system time to adapt to having 25% of your dose removed from the night time. 

 

Please post your thoughts and any questions. 

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NorthStar

Thank you so much for the post, @Shep!

 

3 hours ago, Shep said:

Are you currently taking any thyroid meds? Please let us know if you are.

 

They are very common with people on psych drugs.

 

No, I am not - not right now; though the propranolol was prescribed for that in April. I have what the docs think is temporary thyroiditis. History: My thyroid tested normal through January of this year (had been tested many times up to that point). After 2 hospitalizations w/ more brief and unsuccessful med trials w/ bad reactions (including lithium), a blood test in early April revealed I was hyperthyroid. After additional antibody tests, and a radioactive iodine uptake test, two endocrinologists at separate clinics diagnosed it as thyroiditis (rather than a permanent autoimmune disease) - one suspected postpartum thyroiditis (although, if true, it was late in expressing itself), the other suspected lithium-induced thyroiditis (from the brief trials in late-Jan and then in late-Feb, the first a week at 600mg, the latter 10-14 days at 150-300mg). I was hyperthyroid from sometime before April through late-May or early-June. I then moved quickly into borderline hypothyroid, and there I remain (as of earlier this month). I am hoping this follows the typical trajectory of thyroiditis: ~3 months hyper, ~3 months hypo, but the hypo state can last up to 18 months or longer, so we're monitoring it. Given how many ppl have thyroid issues on SA, I am not necessarily anticipating a swift recovery. I am not exhibiting enough of the typical symptoms of hypothyroid (though there are plenty of symptoms of general endocrine issues), and don't wish to add any more meds if I don't absolutely have to, so the plan is to avoid it.

 

3 hours ago, Shep said:

The goal is to have twice-a-day Klonopin dosing which allows you to be able to sleep all night, takes care of any breakthrough inter-dose withdrawal during the day, and doesn't make you so groggy during the day you're not able to function. 

 

Are you going to be able to sleep with only .375 mg at night? And will .125 mg in the morning cause grogginess? 

 

If so, you may want to go with Alto's suggestion, especially since you already have the scale. It's not hard to use and once you get into the rhythm, you can make an entire batch to last a week or longer so it's not a daily inconvenience. 

 

We generally recommend moving the dose an hour a day, so it would take 12 days to move the dose 12 hours apart. But Alto's recommendation is a bit different. I think Alto's recommendation is a good one if you go with just taking .10 mg in the morning and moving it all at once. However, if you decide to go with the larger .125 mg morning dose, please only move it an hour a day. If it turns out to be too much, it will be much gentler on the nervous system with a gradual change. This will take 12 days to have it completely moved, but it will give your nervous system time to adapt to having 25% of your dose removed from the night time. 

 

Please post your thoughts and any questions. 

 

Thank you so much for this is, @Shep and @Altostrata. While I think I would be able to sleep w/ 0.375 at night, and take 0.125 during the day without morning grogginess, what I am reading here is that if I wanted to start the morning-night split right now, I should not go above 0.10mg day (or below 0.40mg night). So, I will choose the latter option - taking 0.10mg this morning, and 0.40 this evening.

 

Please let me know if your recommendation is to eventually move to 0.125 day and 0.375 night, and how best to do that.

 

I've read that gabapentin has a half-life of 5-7 hours. If the goal for gabapentin is the same for Klonopin (consistent presence in blood level), should I eventually be splitting that, as well, but into 3 doses (as I had before I foolishly just dropped the daytime doses 2-3 weeks ago)? I read the threads on reinstating and 'updosing.' Would it make sense to do 50-100mg 2x during the day and 200 at night? I won't make any changes for now - I just wanted to ask.

 

Thank you both so, so much. I will continue to post my daily notes.

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Altostrata
1 hour ago, NorthStar said:

So, I will choose the latter option - taking 0.10mg this morning, and 0.40 this evening.

 

I think this will work because the 0.10mg will provide coverage in the morning into the evening, where it will overlap with the 0.40mg dose, thus smoothing out the transition. Hopefully, your system won't even notice the change in the evening.

 

Please do not change gabapentin until we get your Klonopin dosing schedule set.

 

Have you had your gut problems checked medically? Have you had a test for h. pylori? Small intestine bacterial overgrowth (SIBO)?

 

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NorthStar
24 minutes ago, Altostrata said:

I think this will work because the 0.10mg will provide coverage in the morning into the evening, where it will overlap with the 0.40mg dose, thus smoothing out the transition. Hopefully, your system won't even notice the change in the evening.

 

Please do not change gabapentin until we get your Klonopin dosing schedule set.

 

Sounds good. I'll hold at 0.10mg and 0.40mg, and won't make any further changes.

 

24 minutes ago, Altostrata said:

Have you had your gut problems checked medically? Have you had a test for h. pylori? Small intestine bacterial overgrowth (SIBO)?

 

Not recently. When I was having GI issues (in Oct 2018 following the Prozac trial in Sept 2018, which caused acute issues at the time, as well), I did have them checked. I was tested for h. pylori (blew into a bag). Result was 'non detect' then, but things might have changed. I have not been tested for SIBO.

 

After sending a message to my primary care doc 2 days ago, I finally heard back. A nurse is strongly suggesting I go into urgent care or the ER due to the tachycardia and shortness of breath, which have been worsening. I'm not sure it's necessary, but I can't get into see my primary for 2 weeks, so I'm off to urgent care. I'll ask for a metabolic panel, h. pylori, and SIBO test there (assuming they offer the latter two).

 

Thank you so much.

 

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Altostrata

Yes, these are symptoms of dysautonomia, which is a nonspecific diagnosis. Not much is known about what causes dysautonomia or how to treat it. It often resolves over time. We see it frequently here, most psychiatric drug adverse effects and withdrawal symptoms are autonomic.

 

To diagnose tachycardia, you'll have to wear a Holter monitor for a while.

 

It's likely the symptoms you have in the earlier part of the day are Klonopin rebound or breakthrough symptoms. Splitting the dose will help.

 

If you have low blood pressure, causing POTS and tachycardia, it may be a side effect of gabapentin or the drug-drug interactions we've already reviewed. You are taking too many brakes on a schedule that concentrates their effect in the evening. When they wear off, odd things happen.

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NorthStar
8 hours ago, Altostrata said:

Yes, these are symptoms of dysautonomia, which is a nonspecific diagnosis. Not much is known about what causes dysautonomia or how to treat it. It often resolves over time. We see it frequently here, most psychiatric drug adverse effects and withdrawal symptoms are autonomic.

 

To diagnose tachycardia, you'll have to wear a Holter monitor for a while.

 

It's likely the symptoms you have in the earlier part of the day are Klonopin rebound or breakthrough symptoms. Splitting the dose will help.

 

If you have low blood pressure, causing POTS and tachycardia, it may be a side effect of gabapentin or the drug-drug interactions we've already reviewed. You are taking too many brakes on a schedule that concentrates their effect in the evening. When they wear off, odd things happen.

 

Hi, @Altostrata. Thank you so much for this thorough note - especially the words "often resolves over time." From reading the forum (especially dysautonomia thread), and other threads here, I understand it's common - and hold out hope that it will improve, over time.

 

My visit to urgent care was at once unhelpful and useful. Good news: After taking the 0.10mg Klonopin this morning, my dysautonomia (POTS, even some stomach issues, panic) eased (thought didn't disappear completely). I was able to eat some things and not have a racing heart. I'm hoping splitting the dose will help into the future.

 

But, this meant the visit to urgent care revealed little. BP was low but not crazy low (they didn't have me stand, though), EKG was normal, blood sodium and other electrolytes were normal (highest blood sodium I've had in the last year, actually). Doc said it was a waste of time to come in (unhelpful) - but, when I was discussing my symptoms and how these have been increasingly acute after I eat, he mentioned he once had a patient that fit that description (broke out into hives and had issues with racing heart and trouble breathing after eating pepperoni). That patient was sent to the Mayo Clinic and diagnosed with..... a mast cell disorder. The doc suggested I ask for testing for that when I follow-up with my primary doctor in two weeks. We'll see if she orders more tests; I will push for SIBO and h pylori tests, as well as mast cell activation syndrome tests.

 

The comparison to this other patient was both validating and scary. I'm terrified that the thyroid issue and mast cell issue will be permanent. I've always had some digestive issues, some environmental allergies, developed a gluten intolerance as a teen, had low-ish BP, had chronic fatigue in high school (while on ADs - timing was uncanny, actually) and after (in the year after I came off, following HS graduation) and recovered within a year, but I've always recovered or been able to eat, sleep, and function well enough. This is new territory and it's really scary and I know that's why so many of us are here. If I could go back each time I was Rxed a med over the last year in particular, I would.

 

Anyway, thank you for setting up this site, @Altostrata. Thank you.

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NorthStar
8 hours ago, Altostrata said:

If you have low blood pressure, causing POTS and tachycardia, it may be a side effect of gabapentin or the drug-drug interactions we've already reviewed. You are taking too many brakes on a schedule that concentrates their effect in the evening. When they wear off, odd things happen

Is the hope that splitting the Klonopin will help with the evening overload. Is there anything else to do before tapering?

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NorthStar

Wednesday, July 24, 2019

Went to bed too late (2am?)

Gradually woke up to increasing heart rate, panicky-feeling by 7 or 8am

*racing heart, some trouble breathing, feeling really dysregulated and exhausted, all while restless*

10:30am - 0.1mg Klonopin

*start feeling more at ease, steady, even a bit heavy and sleepy*

10:30-11:30am - various calls from nurses with various instruction re: recent symptoms; ultimate recommendation is visit to urgent care or ER

12pm - Quick breakfast/lunch of hot buckwheat (GF) cereal, blueberries, and blackberries; smoothie: hemp milk w/ blueberries and arugula

*some bloating, HR picks up a bit, but no significant reaction; hasn't always been the case even with above foods over past week*

1-5pm - Pick up B, urgent care, run errands

6pm - Brown rice, chicken, lettuce, black beans, corn at Chipotle (introducing black beans; hope to introduce some low-hist. legumes as I ease off so much meat and broth)

*Feel dysregulated almost right away, HR picked up and akathisia hit; I think eating out has been an issue re: histamine - need to be more careful*

*Above feeling passes w/in an hour*

7-9:30 - Chores, etc.

*Really tired, heavy*

9:30pm - 270mg gabapentin

9:30pm - brown rice + black-eyed peas

*some bloating, but that's it!*

10:30pm - 0.4mg Klonopin, 5mg melatonin, a little under 400mg mag. glycinate (I've had cramping and loose stools, so cutting back a bit)

11pm - Night walk - *As has been a pattern of late, I became more itchy, sniffly while outside*

11:30pm - rest of brown rice + black-eyed peas, with carrot and salad greens

*Feel more relaxed, grounded*

12pm - epsom salt bath

 

Hope to be asleep soon.

 

Notes

- I've shared notes from urgent care encounter in previous posts.

- For today, at least, the Klonopin split seemed to help ease dysautonomia/WD symptoms!

- I've also moved into the 2nd half of my cycle, which, for the last few months has been the calmer half.

- At least for the latter 1/2 of the day, my stomach has been markedly better (less bloated, achy, less reflux).

- Went back to original brand of Klonopin and Gabapentin today, in case the new brands were adding to an increase in symptoms (the new - not original - pink Klonopin pills did make my skin itchy, so who knows).

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4 hours ago, NorthStar said:

Good news: After taking the 0.10mg Klonopin this morning, my dysautonomia (POTS, even some stomach issues, panic) eased (thought didn't disappear completely). I was able to eat some things and not have a racing heart. I'm hoping splitting the dose will help into the future.

 

I'm glad the .10 mg morning dose did the trick.  This low dose may be all you need to stop the interdose problems. 

 

4 hours ago, NorthStar said:

Is the hope that splitting the Klonopin will help with the evening overload. Is there anything else to do before tapering?

 

You are correct. Splitting the Klonopin will help with the evening overload, which may be causing paradoxical reactions - the more you dampen down the nervous system with brakes (sedating drugs) at night, the more the nervous system fights to stay awake and can cause upticks in symptoms. 

 

 Splitting the Klonopin also helps with any inter-dose withdrawal symptoms. 

 

2 hours ago, NorthStar said:

Went back to original brand of Klonopin and Gabapentin today, in case the new brands were adding to an increase in symptoms (the new - not original - pink Klonopin pills did make my skin itchy, so who knows).

 

Just some information for the future, please do not make two changes at once. Splitting the Klonopin was one change and switching back to the original brand was a second change. It makes it hard to know if your improvements today were due to splitting the Klonopin or to the change in brand. Or it could be a combination of the two. 

 

Please see:

 

The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

 

Please hold everything steady for now. It can take 4 days for your nervous system to register a change and a week or longer to fully adjust to the change. Let's give this change a chance to build a solid baseline before you taper. 

 

Please let us know how well you slept with the reduced night time Klonopin dose. 

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NorthStar

Hi, @Shep. Thank you for the post.

 

8 hours ago, Shep said:

I'm glad the .10 mg morning dose did the trick.  This low dose may be all you need to stop the interdose problems. 

Me, too. I am hoping it stays helpful. I'll of course keep track here.

 

8 hours ago, Shep said:

You are correct. Splitting the Klonopin will help with the evening overload, which may be causing paradoxical reactions - the more you dampen down the nervous system with brakes (sedating drugs) at night, the more the nervous system fights to stay awake and can cause upticks in symptoms. 

 

 Splitting the Klonopin also helps with any inter-dose withdrawal symptoms. 

I honestly had NO idea about the phenomenon of taking a disproportionate amount of sedating drugs affecting you later in the day until you and @Altostrata mentioned it. I'll add that to the list of 'things docs don't tell you (or know).' It didn't start noticeably bothering me until sometime in the last 3-5 weeks, and just picked up. Not sure if it's all the med changes during that time or what, but it's good to be aware of.

 

8 hours ago, Shep said:

Just some information for the future, please do not make two changes at once. Splitting the Klonopin was one change and switching back to the original brand was a second change. It makes it hard to know if your improvements today were due to splitting the Klonopin or to the change in brand. Or it could be a combination of the two. 

Thank you. I am trying to be mindful of this; it's tough but I'll keep at it.

 

8 hours ago, Shep said:

Please hold everything steady for now. It can take 4 days for your nervous system to register a change and a week or longer to fully adjust to the change. Let's give this change a chance to build a solid baseline before you taper. 

Will do. Thank you.

 

8 hours ago, Shep said:

Please let us know how well you slept with the reduced night time Klonopin dose. 

Not quite as well, but part of that is me at the computer until late. Even with my blue light-blocking glasses, this is not a good idea. I'm working towards better sleep hygiene.

 

Thanks so much, @Shep!

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Altostrata

It looks like your symptom pattern is a combination of food reactions and drug rebound reactions. Please continue to post your daily notes.

 

You will need to stabilize on the split Klonopin dosing and resolve the food reactions before tapering anything -- which would be gabapentin.

 

14 hours ago, NorthStar said:

a mast cell disorder.

 

Pepperoni is a very high-histamine food. Very few US doctors treat mast cell disorders. Histamine intolerance is a mast cell syndrome, but virtually no one recognizes it or treats it in the US. Your doctor probably doesn't know it exists.

 

Online support groups and the English-version Web sites from Germany and Switzerland are the only information sources for histamine intolerance sufferers in the US.

 

However, you can often successfully treat yourself with restricted diets and gut-healing protocols. If necessary, herbal treatments for SIBO can be sufficient.

 

Black and red beans are high-histamine. Please review https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf (pdf) Histamine intolerance reactions are highly individual.

 

Bloating is often caused by a reaction to FODMAP foods, which include beans, especially when SIBO is present. You may wish to read up on a low FODMAP diet.

 

You probably will want to keep a food diary to see which foods are safe for you and which cause reactions. We don't have to see your food diary.

 

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NorthStar
2 hours ago, Altostrata said:

It looks like your symptom pattern is a combination of food reactions and drug rebound reactions. Please continue to post your daily notes.

 

You will need to stabilize on the split Klonopin dosing and resolve the food reactions before tapering anything -- which would be gabapentin.

Thank you, @Altostrata. That all makes sense, and I will do my best.

 

2 hours ago, Altostrata said:

Black and red beans are high-histamine. Please review https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf (pdf) Histamine intolerance reactions are highly individual.

 

Bloating is often caused by a reaction to FODMAP foods, which include beans, especially when SIBO is present. You may wish to read up on a low FODMAP diet.

Thanks. The conflicting foods lists (even w/in the low-histamine group) makes me dizzy. I've been pretty low-FODMAP for the past 7-10 days (the beans being an exception). I'll keep at it, though, the best I can.

 

2 hours ago, Altostrata said:

Online support groups and the English-version Web sites from Germany and Switzerland are the only information sources for histamine intolerance sufferers in the US.

 

However, you can often successfully treat yourself with restricted diets and gut-healing protocols. If necessary, herbal treatments for SIBO can be sufficient.

Thank you. I'll keep at the zero/low common allergens, low-FODMAP, low histamine diet for awhile, hoping it aids in my stabilization so I can eventually start a taper.

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NorthStar

Thursday, July 25, 2019 (yesterday)

Rough day, symptom-wise

Sleep a bit rough; fell asleep around 2am

6-9am - Tossed and turned

*Really anxious, restless, some racing heart*

9am? - Out of bed

*Really anxious, restless, some racing heart; back mid-back pain (been an on-off issue over last few months)*

9-11am - Puttering nervously

--> 10:30am - 0.10mg Klonopin

11-12pm - Breakfast/lunch (buckwheat cereal, hemp milk, blueberries) (+hot water bottle for back)

*Feeling dysregulated, anxious; back still hurts*

1-6pm - Babysitting for friend

*Really nervous, restless, anxious entire time; have trouble concentrating; racing heart*

6pm - Dinner (vegan, GF, low histamine flatbread) *low appetite; forcing myself to eat*

*Feel nervous, anxious, a bit nauseous (had been forcing myself to eat quickly)*

6:30-8:30pm - Chores/nervous puttering

8:30pm - Ate rest of dinner

*Stuffy, throat swollen, anxious*

9:30pm - Walk

*Feel a bit better*

10:30pm - 0.40mg Klonopin, 270mg gabapentin, 5mg melatonin, 400mg mag glycinate

10:30pm - Ginger+peppermint tea, epsom salt bath

*Feel a bit better, but not very sleepy - unusual for this time of day post-meds*

11:30pm - Yoga, stretching

11:45pm - Reading in bed

*Gassy, stomach tender (been typical issue over last 2 weeks, especially as I go to bed - gabapentin?)

*Anxious, dizzy, restless - not feeling as tired as I usually am at this hour*

12:30am - Lights out 

(Last night/this morning - Didn't sleep well, woke at 3:45am, tossed and turned until 7am)

 

Yesterday (Thurs) was just a really tough day - in contrast to previous day (Wed). The morning Klonopin dose didn't seem as helpful. Felt that dysautonomia significantly, and I'm losing too much weight; my metabolism and cardiovascular system just feel like they're working on overdrive (in truth, it's been an issue on and off since I gave birth - even while breastfeeding - but really picked up once we started the med merry-go-round last summer, early fall, and especially after the first side-effect-induced Seroquel taper after being on it 2 weeks in Nov/Dec); it slowed on the 2 months of propranolol (alongside the gabapentin, seroquel, and Klonopin) in mid-April to mid-June. Maybe the withdrawal from all of these meds is catching up with me.

 

Anyway, feeling awful but holding steady. Trying to eat enough. If I keep losing weight while eating enough, what do I do? Reinstate low-dose propranolol? Try to eat more and more?

 

Thank you so much.

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NorthStar

July 26, 2019

Today was a better day than yesterday (see above - or don't, doesn't matter), but still challenging. I was riding on very little sleep after having a difficult night for the first time in awhile.

Fell asleep at ~12:30am previous night

3:45am – Woke suddenly

*No racing heart, but a bit restless and nervous; trouble falling back asleep*

4-8am – Tossed and turned, little sleep

*Some racing heart, restless, anxious*

8am – Decide to get out of bed

*Really on edge, dysregulated*

8-9:30am – Puttered nervously

*Feel exhausted, but too restless and uncomfortable to rest*

10:00-10:30am – Make breakfast

10:30am – 0.10mg Klonopin

*Start feeling a bit more even-keel, but worried about eating*

10:45am-12pm – Slooooowly eat breakfast so as to not fill stomach too quickly (this has triggered symptoms) and to gauge reactions (buckwheat cereal, blueberries, some real butter, later: almonds)

*Felt slightly dysregulated at first, then slowly felt much, much better*

Afternoon - *Feel okay, but do have heavy chest and shortness of breath when standing throughout afternoon*

4pm – Late lunch/early dinner (sw potato, brown rice, lentils, arugula, 2 paleo waffles, real butter - ended up being too much food at once)

*Feel ok for an hour, then feel dysregulated, shortness of breath/heavy chest, restless and agitated, bloated w/ stomach pain*

5pm – Walk w/ family

*Once outside, ears plug-up, shortness of breath, throat swollen, wobbly legs – continues for hours*

7pm – Errands

*Anxious, plugged ears, some shortness of breath, jaw pain/clenching, headache*

8:30pm - Veggie soup (chicken broth, sw potato, carrot, parsnip, a bit of lentils)

9:30pm - Walk

*Plugged ears, wobbly legs, shortness of breath*

10:30pm - 0.4mg Klonopin, 270mg gabapentin, 5mg melatonin

11:30pm - Shower

*Still a little edgy, but settling - bad acid reflux and bloating (as has been typical last ~2 weeks at this time of night)*

12pm - Night yoga and stretching

*feel more grounded, physically comfortable*

Lights out soon (currently 12:30am)

 

So, a better day overall, but still one filled with some intense waves, as well as brief windows when I felt my body less reactive. My appetite was better, but I was still reacting to foods, some of which seems to come from the very act of eating. Please ignore my previous questions about perhaps needing to add back a small dose of propranolol. I'm not sure if that would be helpful or not (especially given my difficult, emerging cardio. symptoms; I also read propranolol has been known to release histamine in some studies), and I understand (though it's tough to grasp fully during a bad wave) that picking a lane and sticking with it is of the utmost importance right now.

 

These waves that hit on and off throughout the day - sometimes most of the day - the intense autonomic dysregulation, akathisia, and pain feels in many ways like going through labor again; not the sensation, exactly - just the feeling of being hit with what seems like an unbearable sensation that you can't imagine ever passing until it does. Sometimes I'll try to breath through it and, when it's really bad, hold my husband's hand in the same way I did when I was in labor w B just over a year ago. It's been like that since the first Seroquel trial in November (if I could go back...), and ebbed and flowed at a macro level since then. Overall, I'd say it's improved, but still acute when it hits (and that's most days, recently). My husband has shared w/ me that, again at the macro level, I've been much less erratic and upset in the last 3 months than I was November through this Spring (while on the APs, etc. on and off). So that's something.

 

Anyway - Many happy thoughts and a happy weekend to all.

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NorthStar

Notes for Saturday, July 27, 2019

Slept well (felt tired night before, fell asleep quickly 12:30 or 1am)

Woke at 6 or 7am, tossing and turning

Fell back asleep until 9:30

*Feel increasingly dysregulated - racing heart, upset stomach*

10:30am - 0.10mg Klonopin

11am - Breakfast

*Don't feel any worse - just continued low-grade dysregulation - high HR, somatic discomfort*

12-3pm - Errands

*Good to be distracted, but still have high HR, low BP, feeling uncomfortable*

3pm - Lunch

3:30-4:30pm - Sweating (using hot water bottle)

*Feel much, MUCH better (sweating has often helped, especially when I haven't been able to sweat much on my own, thinking more clearly*

5-6pm - Chores

6pm - Walk w/ family

*HR steadies, fell more even-keel*

7-9pm - Chores

9pm - Dinner (GF toast, some real butter, chicken breast, soup w/ sw potat, chicken broth, carrot, ginger, parsnip, onions, garlic, tumeric)

*Stomach ok, some bloating; but able to sit comfortably (not akathisia) w/ husband*

10:30pm - 5mg melatonin (+10mg B6), 0.4mg Klonopin, 270mg gabapentin, 400mg mag.

10:30pm - Peppermint-ginger tea and epsom salt bath

*Feel too hot, a bit on edge*

11:00pm - Night yoga/stretching

11:15pm - Watch show w/ husband (blue-light-blocking glasses on)

*Feel increasingly dysregulated - some heart racing, fidgeting, on edge and uncomfortable, akathisia*

By 12:30am - Lights out, fall asleep w/in half hour?

(Wake at 4:45am w/ racing heart + gas; toss and turn until 6 or 7am; bad night for sleep, unsure why)

 

Notes

- Fair day symptom-wise, especially after sweating.

- Odd reaction to night meds or meal or something else (?) occurred to make me restless, dysregulated, uncomfortable before bed (happens sometimes).

- Poor sleep last night was in contrast to previous night. Differences: Epsom salt bath, evening meal.

- Stomach irritation has been slowly improving; still waking and going to sleep w/ gas, bloating, and irritation (perhaps due to gabapentin - has had that effect before), but it's much better than a week ago.

 

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NorthStar

Just a note: Upcoming week will bring some stress-inducing shifts as husband is out of town and we're having some repairs on our house, so I'll be staying with family and taking care of B on my own. I know not to make any significant changes during this time (though I might start meditating where I can find the time). Anyway, this week might exacerbate symptoms.

 

And a question: Before I joined SA, back in June, an integrative physician had me tested my histamine, zinc, and copper levels tested. The results came as such - histamine level was normal, but zinc levels were lower than copper. He recommended I start supplementing with a zinc supplement. I'd also like to introduce vitamin C and D3 back into my routine eventually, as both are shown to help with mast cell issues. When would be a good time to start introducing these, one by one?

 

Thank you.

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Sassenach

Hi Northstar.

 

Just checking in to see how you are doing.

Baby steps but going forward.

Good luck.

 

Sassenach

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NorthStar
6 minutes ago, Sassenach said:

Hi Northstar.

 

Just checking in to see how you are doing.

Baby steps but going forward.

Good luck.

 

Sassenach

Hi, Sassenach.

 

You're very kind to check in! How are you? How's lovely Scotland? I miss it there.

 

I'm - okay - dealing with some emerging/worsened POTS and stomach symptoms, but trying to address it with dietary changes. Not sure yet if it's helping. My body has felt like a moving target this last year, btw giving birth, to postpartum & breastfeeding, to hormonal changes, to all the med changes and side-effects leading to more med changes. Hard to nail anything down. Will be looking after B on my own this week w/ my husband out of town, so that will be tough. But, I'm doing my best to hold steady and get through. Walking, stretching, and breathing help.

 

How are you?

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Shep
7 hours ago, NorthStar said:

And a question: Before I joined SA, back in June, an integrative physician had me tested my histamine, zinc, and copper levels tested. The results came as such - histamine level was normal, but zinc levels were lower than copper. He recommended I start supplementing with a zinc supplement. I'd also like to introduce vitamin C and D3 back into my routine eventually, as both are shown to help with mast cell issues. When would be a good time to start introducing these, one by one?

 

Yes, it's always best to introduce new supplements at a low dose and one at a time. You can use the search box to look up these supplements or google survivingantidepressants.org + [name of supplement]. It may help to read others experiences on these supplements while going through withdrawal. 

 

You may want to give yourself a couple of weeks with the new benzo spacing schedule, just to get a really good baseline of where you're at with it before adding in anything new.

 

And since you mentioned the upcoming week will have more stress than usual, perhaps it will be best to simply hold everything steady for now.

 

 

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NorthStar
14 hours ago, Shep said:

You may want to give yourself a couple of weeks with the new benzo spacing schedule, just to get a really good baseline of where you're at with it before adding in anything new.

 

And since you mentioned the upcoming week will have more stress than usual, perhaps it will be best to simply hold everything steady for now.

 

Thanks, @Shep. I'll do that - wait a bit. I might have to cut back on the magnesium (the only supplement I really take anymore), too, as I've been having some issues with it recently.

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NorthStar

July 28, 2019

Oof. A hard day today, after a night of little sleep and preceding a night of even less sleep. Insomnia is creeping back as a regular phenomenon after a nice absence for weeks or months. It was a busy day, too, trying to ready our place for the work being done so my notes are spotty - forgive me:

 

Had fallen asleep by 12:30am or so night before - with some trouble (felt restless, historically unusual after meds, but becoming more common these last few days)

4:45am - wake gradually w/ racing heart + gas pains

Toss and turn w/out real sleep until 6 or 7am

7-9:30am - Manage to fall in and out of sleep

9:30am - Out of bed

*Dysautonomia, akathisia, racing heart, shortness of breath, heavy chest*

10:30am - 0.10mg Klonopin

10:30am - Breakfast

*Feel nervous, anxious, some hopelessness; restless but also really fatigued*

By 12pm - Laundry, moving furniture, etc. for window replacement work this week

~3pm - Lunch

~4pm - Continue w/ house tasks

*Feeling my heart race, difficulty breathing (lots of dust, some lifting, all really stressful); break out in small patch of irritated skin or hives if I scratch myself (this urticaria is all relatively new - last 1-2 months, maybe)*

Taking frequent water breaks

*Feel my metabolism and general body just working on overdrive, restless, have trouble thinking straight*

~9pm - Leave house (work done), run errand

~9:45pm - Reach parents' w/ husband (B in bed)

~10pm - Shower

10:30pm - 0.4mg Klonopin, 5mg melatonin (+10mg B6), 270mg gabapentin, 400mg magnesium

11pm-12am - Dinner (chicken, quinoa, sweet potatoes, olive oil + salt) and downtime at TV w/ husband

*A bit more relaxed and clear-headed, but feeling restless still*

12:30am - Lights out

*Trouble falling asleep (keep being jolted awake by brain or heart palpitation or missed breath; this has been the primary manifestation of my insomnia postpartum - even before the medication merry-go-round*

3:30am - Wake up with racing heart, restlessness, shortness of breath; never fall back asleep

 

Notes

- I'm losing a lot of hair again. As with many women postpartum, I lost a lot of hair a few months after the birth. It started to grow back, but, around the time I was diagnosed with the thyroiditis (early April - post most med trials), the loss had picked up again. It never ceased - and has been getting worse these last couple/few weeks. Unsure if it's my thyroid (being checked this week), the restricted diet, the halt in supplements, just my body recalibrating, stress - maybe all of the above. My scalp is also itchy (has been even before many of the meds, I think, so perhaps some additional inflammation).

- I'm starting to have trouble resting before bed - particularly w/in 1-2 hours after I take my medication. I'm wondering if the meds (in particular the gabapentin?) is adding to this, as it feels like a muted version of the restlessness/uneasy tiredness that came w/ taking gabpentin alone.

- Will be a hard few days without my husband around, and staying w/ family; trying to be mindful of the impact of those changes.

 

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NorthStar

Oof. I'll post today's diary tomorrow. When time permits, though, I'd so appreciate some input on managing the possible histamine-induced respiratory and dysautonomic symptoms that are growing worse, despite the diet changes. The POTS/dysautonomia/allergies have been very severe over the past few days alongside increased stress (husband out of town and moving out temporarily for home improvements) and really bad environmental allergens (pollen, mold counts are high - dust kicked up by moving furniture, too). I've had hours at a time when my heart's been racing, my chest hurts, and I've had to really focus on breathing.

 

@Altostrata, I read the Allergies thread. Do you still recommend saline spray first (this or a netty pot has helped me in the past - I ran out and forgot to refill the saline spray), and azelastine nasal spray second? Would the latter help with some allergen-induced respiratory inflammation (and urticaria/itching)? Drinking enough water and walking does help regulate the heart rate when I can get to those things, but the rushes of heart pounding, trouble breathing, and akathisia are really tough.

 

Mercifully, I have found a couple of integrative physicians in my area who specialize in mast cell conditions and chronic illness (we used to have one of the world's experts here, but he moved out to NY a year or so ago). I have an appt in the next month. Not sure if a diagnosis will be helpful ultimately (doing much of this on my own, as so many here do), but perhaps there is a treatment option I haven't uncovered yet. @Altostrata, was the oral ketotifen helpful to you? And would it ever be recommended during WD/tapering?

 

I apologize for the dump; it's been a really hard day. I am so grateful to all of you - mods and members.

 

Thanks, all.

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ChessieCat
2 hours ago, NorthStar said:

was the oral ketotifen helpful to you?

 

https://www.medicinenet.com/ketotifen-oral_tablet/article.htm

 

Quote

Ketotifen is used to minimize the frequency and severity of asthma attacks. This medication may allow for a reduction in the use of other asthma medications.

 

https://www.webmd.com/drugs/2/drug-17383/ketotifen-ophthalmic-eye/details

 

Quote


This medication is used to prevent and treat itching of the eyes caused by allergies (allergic/seasonal conjunctivitis). Ketotifen is an antihistamine for the eye that treats allergic symptoms by blocking a certain natural substance (histamine). It is also a mast cell stabilizer that prevents allergic reactions by reducing the release of natural substances that cause an allergic reaction.

How to use Ketotifen Fumarate Drops

If you are using the over-the-counter product, read all directions on the product package before using this medication. If your doctor has prescribed this medication, use it exactly as directed.

Apply 1 drop to the affected eye(s), usually twice a day (every 8 to 12 hours) or as directed by the package instructions or your doctor.

Dosage is based on your medical condition and response to treatment.

 

 

 

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NorthStar

Thank you so much for finding and posting that information, @ChessieCat. Greatly appreciated.

 

My understanding is ketotifen is only available OTC as an eye drop medication in the US - unless you have an Rx and access to a compounding pharmacy. https://www.mastattack.org/2018/01/mastattack-107-laypersons-guide-understanding-mast-cell-diseases-part-79/. I'd likely try supplements and keep steady with the diet first. I'm jumping the gun, I know, given I neither have a diagnosis nor a full treatment plan, and am adjusting to recent med changes. It's just been a rough month (especially this last week) symptom-wise.

 

Thanks, again.

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NorthStar

July 29, 2019

Rough, rough day, symptom-wise. Lots of heart palpitations, racing heart, trouble breathing, disorientation, akathisia, and nausea.

Previous night - went to bed around 12:30am, trouble falling asleep (keep being jolted awake by thoughts or heart palpitations)

3:30am - Wake up with racing heart, feeling flushed

3:30-4:30am - Drink some water, do some deep breathing

*Feel a bit more settled, breathing + heart rate a bit more regulated*

4:30am - Return to bed; able to close eyes and rest but unable sleep - toss and turn

6:30am - Up w/ B

*Exhausted and anxious, restless at the same time*

7:30am - Breakfast (buckwheat hot cereal, hemp milk, berries)

*Eat very slowly throughout morning, even in car (husband driving); some stomach pain, gas*

8-9am - Daycare drop-off, meeting w/ contractor, etc.

*Start to feel a bit better*

9am-12pm - Finish cereal, putter

*Continue to feel dysregulated; shortness of breath, pain in chest, gas pain; feel this constant adrenaline-like rush throughout body; painfully uncomfortable*

12pm - Lunch (rice noodles, carrots, freshly-cooked chicken breast, olive oil, salt); trying to be mindful to drink water

*Continue to dysregulated*

2:30-3:15pm - Walk outside + water

*Start to feel much better; heart rate regulates, but shortness of breath remains - some hives on arm, ears plug, tinnitus*

3:15-6pm - Husband to airport, pick-up B, errands

*Feeling okay - much more settled, regulated; Start to feel dysregulated towards end of errands - trouble breathing, hives on arm surface again*

6-8pm - Dinner, bath, bedtime for B

*Really having trouble breathing, akathisia picks up, really anxious; drink water and do some deep breathing and start to feel better, but chest still hurts*

8-10pm - Random chores, prepare and eat dinner (carrot, sw potato, chicken broth, tumeric, ginger soup w/ br rice)

*Hard to eat, feel anxious and nauseous, but get most down; heart pounding, shortness of breath*

10pm - Walk outside

*Feel a bit better; some hives and trouble breathing, though*

10:30pm - 0.4mg Klonopin, 270mg gabapentin, 5mg melatonin, ~300mg magnesium (cut back a bit b/c of loose stools and morning cramping)

11:30pm - Epsom salt bath

*Feel a bit more settled, but still edgy/uncomfortable w/ chest pain and heart palpitations*

1am - Lights out after reading a bit in bed

Slept a bit better, but woke up w/ B at 5:30/6am; I need to go to bed earlier if I can; been hard w/ emerging, growing evening anxiety.

 

So, a hard day. The akathisia and disorientation seemingly brought on by the racing heart, shortness of breath, pain in chest, and itchiness was just so bad today. There were times when I thought I might have to go to the ER, but I had to remind myself that the episodes would pass. Drinking water and walking can help - but going outside does seem to also trigger an allergic response. I don't respond well to benadryl anymore (it has a rebound effect, and understand it's not recommended during WD anyway), but I need to find a better way to manage the growing inflammatory response to environmental allergens. I'll try saline for a few days, in addition to the water, breathing exercises, and walking. The insomnia (which seems to be connected to the breathing/heart issues) has been really tough, too. Hopefully today will be better.

 

Thanks, all.

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Altostrata

Personally, I have a histamine reaction to buckwheat. Histamine intolerance is very individual, the lists of "safe" foods are only guides. If you have reactions to something, it's off-limits to you, at least for a while.

 

Please talk to a specialist about mast cell syndrome and ketotifen. It does come in an oral liquid form. It turned out to be not the right treatment for me -- but I never had mast cell syndrome or disorder.

 

We really only counsel about psychiatric drug tapering here. I am still perplexed why you take all those brakes at once at night. Weren't you moving the gabapentin earlier?

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NorthStar
3 minutes ago, Altostrata said:

Personally, I have a histamine reaction to buckwheat. Histamine intolerance is very individual, the lists of "safe" foods are only guides. If you have reactions to something, it's off-limits to you, at least for a while.

 

Please talk to a specialist about mast cell syndrome and ketotifen. It does come in an oral liquid form. It turned out to be not the right treatment for me -- but I never had mast cell syndrome or disorder.

 

We really only counsel about psychiatric drug tapering here. I am still perplexed why you take all those brakes at once at night. Weren't you moving the gabapentin earlier?

 

Thanks, @Altostrata. I haven't noticed a consistent reaction to buckwheat (and oats and wheat are off-limits to me) so I've kept it in along w/ rice and quinoa, through I'm monitoring. Those lists are, indeed, both helpful and confusing; I've tried to eliminate the commonalities btw lists and any other common allergens (or foods I am confident I've had a reaction to). My reactions seem increasingly indiscriminate right now, though, which is really tough. I've come to measure 'reactions' by degree.

 

I'm also trying to eliminate other allergens, like chemicals and metals. New development: what I thought was acne around my ear lobes and neck's lymph nodes look, according to my mother, like hives, and seem to sprout up when I wear earrings. I've had this happen very occasionally before this year, and it blew up right when I started the lithium trial. I suspect a low-grade nickel allergy might have become a more significant one. I don't know if I want to go nuclear and eliminate stainless steel (cookware, silverware, etc.) and certain high-nickel foods, but it might be necessary. I made an appt. w/ a traditional allergist for skin prick testing.

 

Re: the mast cell specialist - I will. The hives and trouble breathing have been growing worse (although breathing is better today), and I am concerned there's something else going on. I'm trying to look under every rock so I can do as safe and stable a taper as possible when we're there.

 

For @Altostrata and @Shep (when you have time): After we made the Klonopin split I forgot about moving up the gabapentin. Whoops. I can go back; however, after doing some thinking and reading, I have two concerns about moving it too much, and would welcome any advice:

1) Back when I was taking the gabapentin alone during the day (in April, after I initially tapered Klonopin to 0.5mg and at night only), 50% of the time or more it would increase my feeling of dysregulation. [It was similar with the Seroquel; that medication would make my akathisia and agitation (which I hadn't yet attributed to the drug) worse without Klonopin (something I didn't realize until after I tapered the Klonopin in Nov/Dec after my first hospital stay, although it wasn't really until March when a doctor mentioned 'akathisia' that I better understood the dynamics)]. In short, I'm concerned that taking gabapentin anytime before the Klonopin at night will worsen things b/c the Klonopin seems to reduce gabapentin's negative side-effects when they arise. It's a total mess. As an aside, I am also deeply frustrated (with myself and my initial prescribers) for prescribing all these 'brakes' at once - especially the gabapentin and Klonopin, as they both work on GABA - and am eager to taper the gabapentin as soon as it's time.

 

2) I understand gabapentin has a really short half-life. Do you think there's any chance that, if we move it up, it will degrade sleep and increase the morning dyautonomia? I honestly don't know.

 

 

Thanks so much, again.

 

 

 

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NorthStar

Here's my updates from yesterday and today - a very, very difficult day, and a markedly better day.

 

July 30, 2019

My notes and recall from this day are pretty much sloppy; it was a rough one.

  • I did not sleep well; had gone to bed around 1am, had trouble falling asleep, and woke up sometime around 5/5:30am when B started shuffling (he's sleeping in the room w/ me where we're staying right now).
  • Really anxious, with a racing heart upon waking
  • 6am-9am: Took care of B, brought to daycare
  • Really shaky, exhausted but hypervigilant
  • 9am-12pm: Breakfast, puttering
  • (10:30am - 0.1mg Klonopin)
  • Feel really dysregulated, anxious, trouble breathing w/ racing heart - especially when standing; try to drink enough water and eat slowly - which helps.
  • 1pm-3pm - Appt. (driving to and from)
  • Feel better, more settled and grounded
  • 3pm-4:30pm - Errands
  • Start feeling worse, jaw pain and headache grow and worsen (don't have sunglasses w/ me - not helping)
  • 4:30pm-6pm? - Melon, mango, some almonds; feed B a snack, too
  • Continued heavy chest, trouble breathing, some hives popping up if I itch my skin, bad headache
  • 6-7pm? - Walk
  • Feel better, but head still hurts
  • 7-10pm - Dinner for B, B to bed, make my dinner, trouble eating - feel nauseous (dinner of sw potato, carrot, parnsip, chicken broth, and rice)
  • Awful headache and jaw pain, feeling really dysregulated, racing heart, bloated
  • 10? - After hours, I cave and take 1 Ibuprofen
  • 10:30pm - 0.4mg Klonopin, 5mg melatonin (+B6), ~300mg mag, 270mg gabapentin
  • 10:30pm - Short walk outside
  • HR settles
  • 11pm? - Epsom salt bath
  • Feeling dysregulated, restless, achy stomach
  • 12am - Putter, evening stretching
  • Head starts to feel better, body relaxes some, but stomach aches
  • 12:30am - Lights out
  • Slept better

July 31, 2019

Much better day today - oddly so. Start of my menstrual cycle (right on time, this month), which might explain the increased dysregulation and achey-ness of the last week? POTS/disautonomia much better and consistent throughout the day. Very unexpected given previous patterns at the start of my cycle, as well as how hard the last 2 weeks have been.

  • 6:30am? Up w/ B
  • Feel anxious, some heart racing, shaky but settle pretty quickly once I'm up and about
  • 6:30am - 9am: Breakfast w/ B, get ready, bring to daycare - manage to eat some buckwheat cereal and melon before leaving
  • Feel surprisingly sleepy (as opposed to hypervigilant and anxious)
  • 9am - Eat a bit more breakfast
  • Feeling really settled; tachycardia/POTS/disautonomia mild - very pleasantly surprised
  • 10:30am - 0.1mg Klonopin
  • 10:30am-1pm - Puttering, chores, eat a bit more buckwheat cereal (made a big batch this morning), drink plenty of water
  • Continue to feel settled; little by way of breathing problems or akathisia; am very itchy, though - and do have flushing and hives pop up on and off (neck, ears, arms)
  • 2pm - Appt w/ somatic therapist (really helpful session today working through medical trauma from past year)
  • 4:30- Pick-up B, stop by house to check in on work
  • Starting to feel dysregulated (typical for late afternoon/early evening); some shortness of breath and racing heart, wobbly legs, agitation
  • 6pm - Back to family's; eat pre-dinner of leftover (was frozen) soup, quinoa, drink plenty of water
  • Have some trouble eating due to anxiety and discomfort; stomach bloated, feel uneasy, anxious
  • 6-10:30pm - B's dinner, family time, walk, bath + bed, laundry
  • (9pm? - Dinner - lentils, quinoa, squash)
  • Walk really helped w/ rising anxiety; ears clogged while outside; hives pop up here and there; gassy
  • 10:30pm - 0.4mg Klonopin, 270mg gabapentin, 5mg melatonin (+B6), ~200mg mag (been reducing a bit given gastro. crampiness in morning)
  • 10:30pm - Quick walk to help ease bloating and settle HR
  • 11pm - Epsom salt bath
  • Feel really gassy and bloated, but relax and grow pretty sleepy
  • 12:45am - About to be lights out

Notes

  • Two very different days. Perhaps this is a start of a mild window, and a new pattern w/ my hormones. I don't know.
  • The growing allergy/inflammation issues remain. The saline spray is helping somewhat. Skin, scalp, throat, lymph nodes, eyes all feel really inflamed, sore, itchy. My body is just so hyper-reactive right now.
  • Since the breakout of the acute stomach issues about 2.5 weeks ago, my gastro. irritation is much improved. I am still very bloated, achy, and gassy, but it's nowhere near where it was. Perhaps the elimination diet is helping is in this way.
  • I'm still losing more weight than I should be, and it's scary; I feel like I don't have control over my body most of the time.
  • The irritability, agitation, anger, and intense emotional dysregulation was much, much better this month leading up to the start of my cycle; those behaviors were so intense since starting the Seroquel (for the first time) back in November (and then amidst all the other meds), and even since coming off in May. I hope this improvement continues.
  • I've been really weepy on and off (I'm seeing this as an improvement, as I was unable to cry for months over the winter and spring) and angry, especially about how terrible the last year has been. I feel a lot of shame, remorse, anger, and grief. And my brain isn't yet bale to process everything - and, from what I know about trauma work and how long it can take to heal the CNS, I know it might be a long time before I can really move this into the prefrontal cortex.

Thanks, all. I need to work on these being briefer. Once I get going...

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Shep

I'm sorry, NS, this is something we should have mentioned before and I'm not sure we did - in the thread Tips for tapering off Neurontin (gabapentin), please note this about gabapentin and magnesium:

 

On 7/8/2012 at 11:39 PM, Altostrata said:

NOTE There is an interaction between gabapentin and magnesium, see http://www.webmd.com/drugs/2/drug-9845-8217/neurontin-oral/gabapentin-oral/details/list-interaction-details/dmid-1207/dmtitle-gabapentin-aluminum-magnesium-containing-compounds/intrtype-drug. Taking magnesium at the same time as gabapentin decreases the absorption of gabapentin. Avoid taking aluminum or magnesium containing products (such as antacids) for 2 hours before your gabapentin.

 

You may want to factor this into the equation regarding moving gabapentin - since you are currently taking gabapentin with magnesium, if you move the gabapentin away from the magnesium, it may increase the absorption of gabapentin. 

 

While we don't recommend taking it at the same time, since you already are and have acclimated to it, you may want to continue doing so just to keep your blood levels steady.

 

 

17 hours ago, NorthStar said:

For @Altostrata and @Shep (when you have time): After we made the Klonopin split I forgot about moving up the gabapentin. Whoops. I can go back; however, after doing some thinking and reading, I have two concerns about moving it too much, and would welcome any advice:

1) Back when I was taking the gabapentin alone during the day (in April, after I initially tapered Klonopin to 0.5mg and at night only), 50% of the time or more it would increase my feeling of dysregulation. [It was similar with the Seroquel; that medication would make my akathisia and agitation (which I hadn't yet attributed to the drug) worse without Klonopin (something I didn't realize until after I tapered the Klonopin in Nov/Dec after my first hospital stay, although it wasn't really until March when a doctor mentioned 'akathisia' that I better understood the dynamics)]. In short, I'm concerned that taking gabapentin anytime before the Klonopin at night will worsen things b/c the Klonopin seems to reduce gabapentin's negative side-effects when they arise. 

 

 

We recommend only moving drugs an hour a day. This will let you know if you're running into this kind of problem and can address it before taxing your nervous system too much. 

 

If that's the case, then you'll want to taper the gabapentin, as opposed to moving it because you're dealing with a side effect of the gabapentin, as opposed to a paradoxical effect of the combination of the two drugs. 

 

17 hours ago, NorthStar said:

2) I understand gabapentin has a really short half-life. Do you think there's any chance that, if we move it up, it will degrade sleep and increase the morning dyautonomia? I honestly don't know

 

Because the move is so gradual (just an hour a day), you give your nervous system time to adjust to the change and if you find there are simply too many problems, the gradual change allows you to reverse course without taxing your nervous system with an abrupt change. 

 

I wish we could give you an exact answer, but we simply don't know. 

 

 

 

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NorthStar

Hi, @Shep. Thank you so much for your thorough response!

 

- I did not know about the magnesium-gabapentin interaction (and it didn't come up in the drug interaction checker); though I did know about antacids and gabapentin. I should have made the connection.

- Okay, let me know if I am interpreting things correctly:

  • It sounds like I could either move the time I take magnesium away from my gabapentin, but risk changing my typical blood level - or, keep it all at the same time and at consistent doses and just be cognizant of the interaction?
  • And, as for moving the gabapentin, it could be that the side-effect of the gabapentin on its own means it might make more sense to take it close to or at the same time as the nightly Klonopin (but risk the morning dysautonomia)? And then taper the gabapentin first and soon, but when I'm a bit more stable? Or should I continue that now?
  • If the above things are true, I think I would prefer to keep the current dosing schedule, though I've reduced my magnesium a bit due to morning gastro. cramping. And restart the gabapentin taper soon - but after I get more of a handle on the inflammation/allergies/possible mast cell issues. My appt. later this month might signal a start date. (And, of course, after the gabapentin, taper the Klonopin sloooowly.)
  • At some point - probably before the gabapentin taper - I want to reduce my melatonin, as I am taking too much. Not sure of the timing on this - probably in the next month or so.

Let me know if I am reading things correctly. 

 

Thanks so much, again, @Shep!

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Shep
21 hours ago, NorthStar said:

Let me know if I am reading things correctly. 

 

Yes, you are reading everything correctly. Just being aware of an interaction can be helpful, so if you do decide to separate the magnesium from the gabapentin, perhaps do so more slowly than 1 hour a day, just to give your nervous system time to adjust. Or keep them both together for consistently sake. Consistently is really the key here. 

 

21 hours ago, NorthStar said:

And, as for moving the gabapentin, it could be that the side-effect of the gabapentin on its own means it might make more sense to take it close to or at the same time as the nightly Klonopin (but risk the morning dysautonomia)? And then taper the gabapentin first and soon, but when I'm a bit more stable? Or should I continue that now?

 

As long as you proceed slowly, you'll be able to catch problems early, no matter which path you take. You'll have to see if the morning dysautonomia makes everything overall worse or if having interdose withdrawal from the gabapentin makes everything overall worse. So another key concept is how you feel overall. 

 

For example, some people will dose a sleeping pill like Ambien only once a day because they get a full night's sleep. Feeling good from a full night's sleep allows them to handle the Ambien's interdose withdrawal by using non-drug coping skills. So it's the overall-effect you want to track. 

 

21 hours ago, NorthStar said:

At some point - probably before the gabapentin taper - I want to reduce my melatonin, as I am taking too much. Not sure of the timing on this - probably in the next month or so.

 

Please remember you're taking a time-released melatonin, so if you reduce it by crushing and weighing the pill, it will no longer be a time-released pill and it will dump the full dose into your system at once. So please be mindful if this. You may want to switch to a 3 mg time-released version and then a 1 mg time-released version (you could take 2 of these to go from 3 mg to 2 mg) and they even make them in 300 mcg, which is equivalent to 0.3 mg. And of course, give yourself plenty of hold time between each switch. 

 

 

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