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

[Altostrata]

On 7/31/2019 at 11:07 PM, NorthStar said:

• 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

 

You may be reacting to something you ate. Please join a group for mast cell issues or histamine intolerance. There are some on Facebook. They will help you review your food reactions.

 

If you can afford a coach, I like Alison Vickery https://alisonvickery.com.au/ Please tell her I referred you.

 

On 7/31/2019 at 11:07 PM, NorthStar said:

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.

 

That is a good sign. It can take weeks for a non-irritating diet to do its work.

 

On 7/31/2019 at 11:41 AM, 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.

 

I don't know what changing you gabapentin dosing might do, that is why I asked you to do a little experiment and keep notes.

[NorthStar]

On 8/2/2019 at 7:42 AM, Shep said:

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. 

 

Thank you so much for this great information, @Shep. I'll hold the magnesium and Klonopin (split 0.1 - 0.4mg) for now, but it sounds like you and @Altostrata think it might be worth trying to move up the gabapentin. What if I moved a partial dose, as I did with the Klonopin? I just don't want to move all of it b/c my sleep has been so fragile and I notice such a difference when I don't sleep well these days (more than I ever did before this med merry-go-round). And, when taking the gabapentin alone, it's been hit-or-miss as to whether or not it makes me feel worse.

 

On 8/2/2019 at 7:42 AM, Shep said:

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. 

 

Duly noted! Thank you. Fortunately, the same brand makes a 3mg, which I would move to first. I know this would still be a large dose of melatonin, but it would be a step in the right direction. I don't plan to do this until the gabapentin question is settled, of course, and until I hold on everything for a bit.

 

Thank you so much, again!

[NorthStar]

1 hour ago, Altostrata said:

You may be reacting to something you ate. Please join a group for mast cell issues or histamine intolerance. There are some on Facebook. They will help you review your food reactions.

 

If you can afford a coach, I like Alison Vickery https://alisonvickery.com.au/ Please tell her I referred you.

Thank you, @Altostrata. I joined two groups earlier this week - one of whom pointed me in the direction of a specialist I'm now going to see later this month. Advice has been mixed and conflicting, but I'm sifting and winnowing through it. I can reduce the food-based details in my posts here for simplicity's sake.

 

And thank you for the recommendation! If the specialist doesn't help as I need w/ diet, then I will look into her.

 

1 hour ago, Altostrata said:

I don't know what changing you gabapentin dosing might do, that is why I asked you to do a little experiment and keep notes.

I'm willing to try this; given Shep's recommendation to focus on how I feel overall, as well as my fragile sleep and my difficult taking gabapentin on its own sometimes, I'm wondering what your thoughts might be on moving a partial dose up as I did with the Klonopin?

 

Thank you so much for your time, Alto! It's much appreciated.

[NorthStar]

So sorry for the lack of daily notes over the past 2 days; it has been tough parenting on my own (may the heavens above bless single parents!) and navigating family and our temporary living situation. My husband is back, but we're still staying with family until some house repairs are done.

 

Overall...

• Good: Sleep has improved a bit; less middle-of-the-night waking. Still waking up with significant anxiety, some racing heart, and general discomfort - but this tends to dissipate after I rise.
• Good: Stomach still hurts and is bloated, but not as bad as 3 weeks ago.
• Good: Once my period hit earlier this week, my tachycardia/POTS symptoms greatly improved - a break from the typical pattern. While I still have some shortness of breath and the akathisia/restlessness remains throughout much of the day, the improvement in the cardio.-side of things has remained.
• Tough: I am still breaking out in hives and rashes - especially when outside. Ears plugging, and throat-swelling remains.
• Tough: The one really worrying symptom that's worsened is the weight and muscle-mass loss. It's been growing worse, especially in the last week. I think I've lost 10 pounds in the last month/6 weeks, while food intake has remained relatively stable. I'll be asking my primary doc. and the mast cell/POTS specialist about this in 10 days and am close to underweight. I don't know what's going on with my metabolism; it's a little scary. Perhaps it's my body adjusting from the other meds, in particular the Seroquel - which I 'tapered' off in May.

I hope to return to daily notes in the next couple of days. Thank you!!

[Altostrata]

On 7/24/2019 at 10:44 AM, Altostrata said:

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

 

Not clear about when you're taking your drugs. What is your current daily drug schedule, with dosages?

[NorthStar]

2 hours ago, Altostrata said:

 

Not clear about when you're taking your drugs. What is your current daily drug schedule, with dosages?

Hi, Alto.

Morning: 10:30am - 0.10mg Klonopin

Evening: 10:30pm - 0.40mg Klonopin, 270mg gabapentin, 5mg time-release melatonin (+10mg B6 combo.), 350mg magnesium.

 

I need to update my signature, as well.

 

Thank you!

[Altostrata]

On what day did you move 0.10mg Klonopin to 10:30 a.m.? It's important to keep track of dosage changes.

[NorthStar]

17 hours ago, Altostrata said:

On what day did you move 0.10mg Klonopin to 10:30 a.m.? It's important to keep track of dosage changes.

Hi, Alto.

 

On July 24, just after you and Shep suggested splitting the 0.5mg night dose to 0.1mg morning and 0.4mg night to address potential interdose withdrawal.

 

Thanks!

[NorthStar]

It's been a rough few days - rough and scary. My weight and muscle mass loss seems to have accelerated in the last couple of... Weeks? Few days? I'm not sure. But it's significant and I'm not sure the cause, and would welcome any advice folks might have. It's as if I can feel this energy pulsating in me and shedding the calories wherever I am... Is this just withdrawal (from Seroquel - ended in May, or propranolol - abruptly ended in June, or lowered gabapentin - abruptly in June, or any/everything else from the last year)? Is this the result of some underlying medical condition? I just don't know.

 

Aside from initiating the low FODMAP and low histamine diet about 3 weeks ago now (to which I've stayed pretty true), and going off most of my supplements (per recommendations here - to eliminate possible allergens), there's been only slight changes in caloric intake, and no increase in activity level. My thyroid is stabilizing (was overactive Mar-May, then borderline underactive June-now, with recent slight improvement in TSH and T4 last week). The heart palpitations, low blood pressure, and chronic+acute (at once) stomach pain have abated some, though remain on and off throughout the day. So, I just don't know where this extreme weight loss is coming from. I'm flushed and sweaty. I do notice that if I don't eat for 2-3 hours, my stomach aches. And the headaches and body aches have worsened.

 

I went to see my primary care practitioner today. She was great in that she was receptive - actually has a patient with a mast cell condition and so she knows that that issue exists. She also talked at length about malabsorption and leaky gut. In sum, she shares my concern about the weight (6-10 lb lost in 4-6 weeks) and thinks it's one of two things, either 1) malabsorption due to a food intolerance (she thinks I should focus on each of the individual FODMAPS and eliminate the group(s) w/ foods that seems to be causing the most problems, and otherwise eat foods I'd usually be eating), or 2) a metabolic/endocrine issue. For the latter, I'll be seeing my endocrinologist again - hopefully soon. I'm not sure what to do about the first other than what I'm doing. I could give up meat and animal byproducts altogether, or go back to my original diet, or cut out all grains... I'll need to give this some thought. The only tests she's doing today are H. pylori and a panel of bloods for autoimmune conditions (their lab does not test for SIBO).

 

Next steps are me to see the endocrinologist and get ready for my appointment with the mast cell/POTS/complex medical condition specialist next week. I have to pay out of pocket for that one, but am hoping she'll run a host of less common labs (I have a list ready) and provide some insight, rendering the cost worth it in my mind.

 

Anyway - forgive the blathering. I need to recommence with the diaries. Though: Any insights on the intersection of withdrawal and unintentional and unhealthy weight loss would be so appreciated. I would imagine, too, that if one's metabolism is sped up, 1) interdose withdrawal is worsened, and 2) that 1/2 life of medication is shorted. Oof.

[ChessieCat]

Please correct the years in your drug signature.  You've accidentally typed 2018 when it should be 2019.

 

April 2019 - June 2018

 

Currently (July 2018)

[NorthStar]

5 minutes ago, ChessieCat said:

Please correct the years in your drug signature.  You've accidentally typed 2018 when it should be 2019.

 

April 2019 - June 2018

 

Currently (July 2018)

Done! Thank you for bringing that to my attention, @ChessieCat.

[NorthStar]

16 hours ago, NorthStar said:

It's been a rough few days - rough and scary. My weight and muscle mass loss seems to have accelerated in the last couple of... Weeks? Few days? I'm not sure. But it's significant and I'm not sure the cause, and would welcome any advice folks might have. It's as if I can feel this energy pulsating in me and shedding the calories wherever I am... Is this just withdrawal (from Seroquel - ended in May, or propranolol - abruptly ended in June, or lowered gabapentin - abruptly in June, or any/everything else from the last year)? Is this the result of some underlying medical condition? I just don't know.

 

Aside from initiating the low FODMAP and low histamine diet about 3 weeks ago now (to which I've stayed pretty true), and going off most of my supplements (per recommendations here - to eliminate possible allergens), there's been only slight changes in caloric intake, and no increase in activity level. My thyroid is stabilizing (was overactive Mar-May, then borderline underactive June-now, with recent slight improvement in TSH and T4 last week). The heart palpitations, low blood pressure, and chronic+acute (at once) stomach pain have abated some, though remain on and off throughout the day. So, I just don't know where this extreme weight loss is coming from. I'm flushed and sweaty. I do notice that if I don't eat for 2-3 hours, my stomach aches. And the headaches and body aches have worsened.

 

I went to see my primary care practitioner today. She was great in that she was receptive - actually has a patient with a mast cell condition and so she knows that that issue exists. She also talked at length about malabsorption and leaky gut. In sum, she shares my concern about the weight (6-10 lb lost in 4-6 weeks) and thinks it's one of two things, either 1) malabsorption due to a food intolerance (she thinks I should focus on each of the individual FODMAPS and eliminate the group(s) w/ foods that seems to be causing the most problems, and otherwise eat foods I'd usually be eating), or 2) a metabolic/endocrine issue. For the latter, I'll be seeing my endocrinologist again - hopefully soon. I'm not sure what to do about the first other than what I'm doing. I could give up meat and animal byproducts altogether, or go back to my original diet, or cut out all grains... I'll need to give this some thought. The only tests she's doing today are H. pylori and a panel of bloods for autoimmune conditions (their lab does not test for SIBO).

 

Next steps are me to see the endocrinologist and get ready for my appointment with the mast cell/POTS/complex medical condition specialist next week. I have to pay out of pocket for that one, but am hoping she'll run a host of less common labs (I have a list ready) and provide some insight, rendering the cost worth it in my mind.

 

Anyway - forgive the blathering. I need to recommence with the diaries. Though: Any insights on the intersection of withdrawal and unintentional and unhealthy weight loss would be so appreciated. I would imagine, too, that if one's metabolism is sped up, 1) interdose withdrawal is worsened, and 2) that 1/2 life of medication is shorted. Oof.

 

Bit of an update. 2 labs came back abnormal in the autoimmune panel:

- ANA (anti-nuclear antibodies), at 1.07 (normal is <0.99), and

- C-Reactive Protein, at 0.5 mg/dL (or 50mg/L).

Neither is terribly high, but it warrants enough investigation that I now have an appt. with a rheumatologist in 2 weeks. My weight and muscle mass continue to drop (especially in the last 2-4 weeks), and I am scared but trying to remain hopeful. Other inflammatory indictors went down (ESR was 8 in April, and is now 2 - normal being under 15), or were low (Anti-CCP was 1). And my thyroid is moving more towards normal after being borderline hypo for 2 months.

 

Perhaps the abnormal bloodwork is inflammation from my gut due to SIBO or some other infection, and/or lingering inflammation from the thyroiditis. Maybe it's lupus. I don't know. I'll report back when I know more. It just sucks.

 

For now, I hope to restart the daily diaries tomorrow.

[NorthStar]

Hello, all. I'm sorry it has been so long; it's been a very eventful 1.5 months for me. I'll provide some updates, and try to come back more often:

 

Where to begin...

 

- I have been to various doctors probably 20 times in the past 1.5 months to address some ongoing health issues - weight loss most notably (I lost weight really quickly after my son was born in May, stabilized a bit over the late fall, winter, and early spring, then starting losing 1-3 lb/month since April), thyroiditis, recently swollen lymph nodes, swollen throat, hives, tachycardia, GERD, suspected gastroparesis, some odd blood results, etc. I've had more than 30 vials of blood drawn. With the exception of some hormones, borderline ANA and rheumatoid factor (all other rheumatological labs were normal), and mast cell labs (see low), labs were normal.

 

- Given the thyroiditis history alongside the swollen neck and lymph nodes, my endo. had me do a thyroid and throat ultrasound. It showed inflammation and two small thyroid nodules, which didn't quite meet the criteria for biopsy. Also showed normal but enlarged lymph nodes.

 

- I saw a specialist (MD) in mast cell diseases, and she ordered a slew of blood tests (as well as a random and 24-hour-urine test) consistent with Afrin & Molderings 2014 diagnostic recommendations (https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm?fbclid=IwAR1sU3-zymkAUbI_FkpmEx54Dw7eCjehp6wZmvZGKvANOiIdUg_NkVZsiv0). Blood and urine work showed elevations in histamine, methylhistamine, and leukotrienes (but NOT tryptase) consistent with mast cell activation syndrome (MCAS) - and so I was given a diagnosis of idiopathic MCAS.

 

- The same mast cell doctor diagnosed me with Ehlers-Danlos Syndrome - type III (mast cell issues and EDS often go hand-in-hand) - a complete surprise initially, but one that made more sense upon consideration (I'm not double-jointed, but I have had bad knees since running a half marathon, and I've always been prone to sprains). I am hypermobile in one knee, both elbows, and some other places - who knew. I have to do PT and eliminate certain exercises (like running) - the latter of which is a bit devastating given my pre-postpartum/medication-mess lifestyle.

 

- The MCAS and EDS diagnoses moved me to start physical therapy for joint stabilization (every day at home and every week in-office for awhile), do an echocardiogram (which came back fine - many EDS patients have heart valve issues), see an ophthalmologist to ensure my eye lenses are in tact (check), have an MRI to check spine/neck stability and for any malformations (2 bulging discs, signs of spondylosis, but no other issues), and check in with a GI doc for emerging/progressing dysautonomic GI issues + weight loss (really since starting lithium - now ended - and gabapentin back in February) (initial plan of frequent, small meals and Tums didn't pan out so we're heading towards an endoscopy and colonoscopy).

 

- While my thyroid hormones have normalized (though T4 is a bit borderline-low), I can't seem to keep weight on and the recent ongoing inflammation in my thyroid is odd (endo says it should just go away on its own, but you'd think the function of the gland would be off, too...).

 

- I did the ACTH stimulation test to see if my adrenals were responsible for the weight loss. I had that done back last fall, as well. Last fall, the results were much more definitive in the "normal adrenal function" column; now, it's a bit borderline. I'm terrified as I do NOT want to go on steroids. I'm hoping that the bodily inflammation and meds I'm on and tapering from (gabapentin and klonopin) are responsible for the slight cortisol suppression. My DHEAS was normal, thank God, indicating things might be okay - but who knows. Mast cell issues and adrenal dysfunction are common friends.

 

- My hormones have been whacky; I thought they had leveled off, but no. Irregular periods. And where 3 months ago the latter half of my cycle was the easier half, now it's the opposite. I've read that MCAS/mastocytosis folks are often flared during ovulation, so maybe that's why; my GI symptoms always worsen then. Blood tests do show some borderline-low sex hormones, some of which is consistent with thyroiditis.

 

- I started seeing a functional medicine doc and did some mail-in lab testing. I'm not sure how much credence to give these things... It did show a systemic fungal infection and so I was prescribed Diflucan. But that interferes with Klonopin and gabapentin, and cortisol, I am terrified to try it. But I can't fast or lose all simple carbs given the weight issues, so I'm still hemming and hawing over this.

 

- And the kicker: I found a lump in my breast last week. I went to my gynecologist, thinking it would be dismissed (I assumed I was freaking out for nothing, as has been my growing tendency given the last year). She told me it was likely a cyst or duct, but we needed to do a mammogram and ultrasound to be safe. The scans not only showed that the lump was a mass, but some irregular growth in my other breast. So I'm having two biopsies done next week. Radiologist who read the scans was lovely, but hearing the term "cancer" coming unprompted from a doctor in relation to you is not fun. I have another lump elsewhere, which might need to be biopsied.

 

New diagnoses and what I'm doing:

 

- MCAS

---> Doc said was likely triggered by pregnancy/birth, and the intense stress from the last year amidst all the medications - but I've also always had this, I know I have. Also, reading up on the connections between mast cell conditions and diagnosed psychiatric conditions is fascinating (I read a lot on the histamine diet thread here, as well). My personal bet is that the birth, stress of so many moves and hospitalizations and being on so many meds that act as mast cell stabilizers - benzos, anti-psychotics, etc. - and then being abruptly pulled off, made everything so, so much worse and my histamine receptors are messed up right now (the MCAS really worsened after the final Seroquel taper and Seroquel is a powerful antihistamine). In fact, my initial postpartum insomnia, upon reflection, was related to the heart palpitations, which I suspect was brought on by mast cell issues. I have joined a couple of online mast cell support groups, but this is tough, too, as everyone is typically on a slew of meds including TCAs and benzos - and the stories are so disheartening. I started taking quercetin, vitamin C, PEA, and black nigella seed oil as needed - and all help some of the time, but the food reactions are rough and I've had some early anaphylaxis that warranted an epi pen Rx. I continue to eat low histamine, no leftovers unless frozen. I am considering H1 and/or H2 blocker meds, or oral cromolyn sodium. I need to gain weight again. I have no room to play with my diet and do things like fast. I'm going to try the rotation diet soon (where you don't eat one food more than 4 days in a row), as I keep losing safe foods. I'm also going to have my meds compounded, not for tapering but to eliminate allergen fillers.

 

- EDS III / hypermobility

---> I'm working the PT, and doing the best I can.

 

- GERD, dyspepsia, likely gastroparesis

---> I've never had this issue long-term, even while having some long-term IBS. This started first with the lithium, then with the gabapentin, and then grew in severity in May and June. I'm praying it's temporary, and eating small meals more often (and some liquid meals) will help, but I just read and hear these stories of autonomic dysfunction going hand-in-hand with mast cell issues and EDS.

 

- Thyroid nodules

---> Hopefully not a big deal; we'll be monitoring.

 

- Candidiasis

---> I can't go on a fast as my weight would be compromised, and I can't eliminate all simple carbs because I need to ensure I am absorbing something, but the 2-week Diflucan Rx feels dicey. I'm not sure what to do here. There's definite overlap between yeast issues and MCAS, so maybe the meds would help?

 

That's my update. I have tapered the gabapentin down to 250mg (updated in signature) and am holding steady on the Klonopin. It's so hard to know where one symptom started and another ended - and where one life or med change was made. And I'm terrified of all the lumps and bumps, the possible C-word diagnosis (always thinking of the worst case scenario), and can't help but blame myself for not intervening in this mess sooner. And I don't know where the line is between safely medicating for my mast cell condition and dysregulating my body further - but I have to gain weight and avoid anaphylaxis.

 

For all of the unknowns, the hardest two pieces of this catastrophe have been A) not being able to be a mother in the way I wanted and know my son like I would (giving up breastfeeding early, being in the hospital and away from him, being ill so much), and B ) being away from my work in these times; I was a climate change policy analyst and NGO worker for a long time and was earning my PhD in that - and now I have to sit here and watch what's going on and be unable to be engaged like I want to be. I really hope this, too, shall pass.

 

Thanks for reading.

 

Edited September 29, 2019 by ChessieCat
added space

[rapunzel2]

Hello!

 

I just wanted to say that I'm also suspecting a mast cell activation disorder myself (having histamine reacions) - and it also started when I jumped off seroquel that I had taken for years. I think seroquel is such a strong antihistamine, it can mess with mast cells/histamine issues. also, I developed thyroid problems, slight hypo. 

 

I hope you will get better!

[Gigi12]

Omg. I am just discovering MCAS. I recently withdrew anti depressants and I am having increasing symptoms of MCAS. It is now a matter of finding a doctor who will do tests. 🤔

[JoJo90]

On 9/29/2019 at 4:15 AM, NorthStar said:

Hello, all. I'm sorry it has been so long; it's been a very eventful 1.5 months for me. I'll provide some updates, and try to come back more often:

 

Where to begin...

 

- I have been to various doctors probably 20 times in the past 1.5 months to address some ongoing health issues - weight loss most notably (I lost weight really quickly after my son was born in May, stabilized a bit over the late fall, winter, and early spring, then starting losing 1-3 lb/month since April), thyroiditis, recently swollen lymph nodes, swollen throat, hives, tachycardia, GERD, suspected gastroparesis, some odd blood results, etc. I've had more than 30 vials of blood drawn. With the exception of some hormones, borderline ANA and rheumatoid factor (all other rheumatological labs were normal), and mast cell labs (see low), labs were normal.

 

- Given the thyroiditis history alongside the swollen neck and lymph nodes, my endo. had me do a thyroid and throat ultrasound. It showed inflammation and two small thyroid nodules, which didn't quite meet the criteria for biopsy. Also showed normal but enlarged lymph nodes.

 

- I saw a specialist (MD) in mast cell diseases, and she ordered a slew of blood tests (as well as a random and 24-hour-urine test) consistent with Afrin & Molderings 2014 diagnostic recommendations (https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm?fbclid=IwAR1sU3-zymkAUbI_FkpmEx54Dw7eCjehp6wZmvZGKvANOiIdUg_NkVZsiv0). Blood and urine work showed elevations in histamine, methylhistamine, and leukotrienes (but NOT tryptase) consistent with mast cell activation syndrome (MCAS) - and so I was given a diagnosis of idiopathic MCAS.

 

- The same mast cell doctor diagnosed me with Ehlers-Danlos Syndrome - type III (mast cell issues and EDS often go hand-in-hand) - a complete surprise initially, but one that made more sense upon consideration (I'm not double-jointed, but I have had bad knees since running a half marathon, and I've always been prone to sprains). I am hypermobile in one knee, both elbows, and some other places - who knew. I have to do PT and eliminate certain exercises (like running) - the latter of which is a bit devastating given my pre-postpartum/medication-mess lifestyle.

 

- The MCAS and EDS diagnoses moved me to start physical therapy for joint stabilization (every day at home and every week in-office for awhile), do an echocardiogram (which came back fine - many EDS patients have heart valve issues), see an ophthalmologist to ensure my eye lenses are in tact (check), have an MRI to check spine/neck stability and for any malformations (2 bulging discs, signs of spondylosis, but no other issues), and check in with a GI doc for emerging/progressing dysautonomic GI issues + weight loss (really since starting lithium - now ended - and gabapentin back in February) (initial plan of frequent, small meals and Tums didn't pan out so we're heading towards an endoscopy and colonoscopy).

 

- While my thyroid hormones have normalized (though T4 is a bit borderline-low), I can't seem to keep weight on and the recent ongoing inflammation in my thyroid is odd (endo says it should just go away on its own, but you'd think the function of the gland would be off, too...).

 

- I did the ACTH stimulation test to see if my adrenals were responsible for the weight loss. I had that done back last fall, as well. Last fall, the results were much more definitive in the "normal adrenal function" column; now, it's a bit borderline. I'm terrified as I do NOT want to go on steroids. I'm hoping that the bodily inflammation and meds I'm on and tapering from (gabapentin and klonopin) are responsible for the slight cortisol suppression. My DHEAS was normal, thank God, indicating things might be okay - but who knows. Mast cell issues and adrenal dysfunction are common friends.

 

- My hormones have been whacky; I thought they had leveled off, but no. Irregular periods. And where 3 months ago the latter half of my cycle was the easier half, now it's the opposite. I've read that MCAS/mastocytosis folks are often flared during ovulation, so maybe that's why; my GI symptoms always worsen then. Blood tests do show some borderline-low sex hormones, some of which is consistent with thyroiditis.

 

- I started seeing a functional medicine doc and did some mail-in lab testing. I'm not sure how much credence to give these things... It did show a systemic fungal infection and so I was prescribed Diflucan. But that interferes with Klonopin and gabapentin, and cortisol, I am terrified to try it. But I can't fast or lose all simple carbs given the weight issues, so I'm still hemming and hawing over this.

 

- And the kicker: I found a lump in my breast last week. I went to my gynecologist, thinking it would be dismissed (I assumed I was freaking out for nothing, as has been my growing tendency given the last year). She told me it was likely a cyst or duct, but we needed to do a mammogram and ultrasound to be safe. The scans not only showed that the lump was a mass, but some irregular growth in my other breast. So I'm having two biopsies done next week. Radiologist who read the scans was lovely, but hearing the term "cancer" coming unprompted from a doctor in relation to you is not fun. I have another lump elsewhere, which might need to be biopsied.

 

New diagnoses and what I'm doing:

 

- MCAS

---> Doc said was likely triggered by pregnancy/birth, and the intense stress from the last year amidst all the medications - but I've also always had this, I know I have. Also, reading up on the connections between mast cell conditions and diagnosed psychiatric conditions is fascinating (I read a lot on the histamine diet thread here, as well). My personal bet is that the birth, stress of so many moves and hospitalizations and being on so many meds that act as mast cell stabilizers - benzos, anti-psychotics, etc. - and then being abruptly pulled off, made everything so, so much worse and my histamine receptors are messed up right now (the MCAS really worsened after the final Seroquel taper and Seroquel is a powerful antihistamine). In fact, my initial postpartum insomnia, upon reflection, was related to the heart palpitations, which I suspect was brought on by mast cell issues. I have joined a couple of online mast cell support groups, but this is tough, too, as everyone is typically on a slew of meds including TCAs and benzos - and the stories are so disheartening. I started taking quercetin, vitamin C, PEA, and black nigella seed oil as needed - and all help some of the time, but the food reactions are rough and I've had some early anaphylaxis that warranted an epi pen Rx. I continue to eat low histamine, no leftovers unless frozen. I am considering H1 and/or H2 blocker meds, or oral cromolyn sodium. I need to gain weight again. I have no room to play with my diet and do things like fast. I'm going to try the rotation diet soon (where you don't eat one food more than 4 days in a row), as I keep losing safe foods. I'm also going to have my meds compounded, not for tapering but to eliminate allergen fillers.

 

- EDS III / hypermobility

---> I'm working the PT, and doing the best I can.

 

- GERD, dyspepsia, likely gastroparesis

---> I've never had this issue long-term, even while having some long-term IBS. This started first with the lithium, then with the gabapentin, and then grew in severity in May and June. I'm praying it's temporary, and eating small meals more often (and some liquid meals) will help, but I just read and hear these stories of autonomic dysfunction going hand-in-hand with mast cell issues and EDS.

 

- Thyroid nodules

---> Hopefully not a big deal; we'll be monitoring.

 

- Candidiasis

---> I can't go on a fast as my weight would be compromised, and I can't eliminate all simple carbs because I need to ensure I am absorbing something, but the 2-week Diflucan Rx feels dicey. I'm not sure what to do here. There's definite overlap between yeast issues and MCAS, so maybe the meds would help?

 

That's my update. I have tapered the gabapentin down to 250mg (updated in signature) and am holding steady on the Klonopin. It's so hard to know where one symptom started and another ended - and where one life or med change was made. And I'm terrified of all the lumps and bumps, the possible C-word diagnosis (always thinking of the worst case scenario), and can't help but blame myself for not intervening in this mess sooner. And I don't know where the line is between safely medicating for my mast cell condition and dysregulating my body further - but I have to gain weight and avoid anaphylaxis.

 

For all of the unknowns, the hardest two pieces of this catastrophe have been A) not being able to be a mother in the way I wanted and know my son like I would (giving up breastfeeding early, being in the hospital and away from him, being ill so much), and B ) being away from my work in these times; I was a climate change policy analyst and NGO worker for a long time and was earning my PhD in that - and now I have to sit here and watch what's going on and be unable to be engaged like I want to be. I really hope this, too, shall pass.

 

Thanks for reading.

 

Hello NorthStar.

 

How are you doing now? MCAS, EDS, thyroid nodules, GI issues, weight loss have all been troublesome with me also. Did you get any answers? 

 

[NorthStar]

1 hour ago, JoJo90 said:

Hello NorthStar.

 

How are you doing now? MCAS, EDS, thyroid nodules, GI issues, weight loss have all been troublesome with me also. Did you get any answers? 

 

 

Hi, JoJo.

 

I'm sorry you're having issues. These nebulous conditions are tough to diagnose and get taken seriously.

 

For my part, we're still working on getting answers. It's been a LOT of testing and scares (three cancer scares and biopsies) and diagnoses and undiagnoses, which I don't want to go into completely right now. I feel pretty upended from all the medical trauma. I'll say this much...

 

I definitely have MCAS - confirmed with lab testing. If anyone is looking to get diagnosed, make sure the practitioner follows this protocol and doesn't just test ONLY your tryptase or histamine level: https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm and be sure to follow the strict handling instructions for the 24-hr urine and some of the blood samples: http://mastcellresearch.com/what-is-mastocytosis/afrin-instructions-for-24hr-urine-collection-for-mast-cell-mediator-testing-2/. I take quercetin, vitamin C, and some other supplements, and avoid triggers - all of which help. I tried cromolyn but couldn't tolerate it. I might go back to it. I also have children's dye-free Benadryl on hand just in case (I take TINY amounts) and an H2 blocker very rarely. Read around; there are lots of great resources out there. Avoiding triggers, and then taking H1 (like Claritin or Allegra) and H2 blockers (like Pepcid) is the first line treatment - but you should so what's best for you and talk to your doctor(s).

 

Incidentally, I was tested for mold in my urine, and my levels were the highest my doc had ever seen. We since found a ton of mold in 2 of the places we've lived in the last 2 years - and did remediation in our current house. Once we move back in, I'll be doing treatment for that. That can trigger mast cell issues.

My thyroid was outright hyperactive a year ago, then went borderline underactive, and has been doing weird swings - within the course of a day - btw TSH and my T3 and T4. I have antibodies but almost all are too low to be positive. My TPO and anti-thyro. antibodies just went above normal, so I definitely have autoimmune thyroiditis, which is likely causing some thyroid hormone surges (makes tapering very difficult). I also have 2 nodule and one of them is likely autonomous - giving off hormone - so I am having that nodule removed. But I had to go through several endocrinologists before I found one that put all the pieces together - and even then I was pushing to look at my uptake scan and ultrasound images throughout the appt. I am hoping that doing that, by removing the autonomous nodule, treating my MCAS, addressing the mold, and continuing to taper, I will help the thyroid issues. I can't take thyroid hormone b/c my hormone levels are too all over the place.

I might not have EDS after all. There's debate. But it really doesn't matter as treatment involved PT which I am doing anyway.

 

I have had soooo many scans, an endoscopy and colonoscopy, and nothing definitive has come up on the GI stuff. I am waiting on another scan result, though.

I HAVE been diagnosed with a parathyroid issue (these glands are found on the back of the thyroid, usually, and regulate calcium in the blood). It runs in the family and we're wondering if this isn't want tipped the scales when I started having issues postpartum. My parathyroid hormone has been elevated in conjunction with an inappropriately elevated ionized calcium, and low vitamin D 25 but higher vitamin D 1,25. It's usually a simple fix - surgery to remove the overactive glands (you usually have four and can survive with 1/2 a gland if it's overactive). But it's very difficult to find a doctor who know how to diagnose this - and it took almost a year. What tipped the scales was being diagnosed with osteoporosis last winter (which otherwise made no sense). My numbers are also all over the place, but aberrant enough to warrant surgery (in tandem with the bone density issues).

 

So I am having parathryoid surgery later this summer, at which time they'll remove the overactive thyroid nodule (I really hope that's all that will need to be removed), and some of the enlarged lymph nodes in the area. And then we'll have to see how I feel and where I'm at.

 

I'm also exploring some neurological/spine issues, which I'll save to go into for another day.

 

But it's been a grueling process to find answers. Scans, tests, misdirection, soooo many doctors. With the pandemic, everything has been - necessarily - put on hold and slowed down. I feel for everyone who has mental health, physical health (those are so indelibly connected, though) issues - especially now. A patient should not need to take this much initiative to find answers and get well. This whole ordeal has further impressed upon me the importance of a thorough physical work-up before delving into - or while on - psych medication, or any medication; they can be helpful but so can finding underlying causes of mental distress - be they endocrine issues, trauma, etc.

Good thoughts to all - 

[NorthStar]

On 11/17/2019 at 11:38 AM, Gigi12 said:

Omg. I am just discovering MCAS. I recently withdrew anti depressants and I am having increasing symptoms of MCAS. It is now a matter of finding a doctor who will do tests. 🤔

 

Hi, Gigi.

 

I apologize for just now responding. I wrote a post just now here, but I'll quote the bit on MCAS diagnosis, b/c it's important to do the full work-up if you're going to do it:

If anyone is looking to get diagnosed, make sure the practitioner follows this protocol and doesn't just test ONLY your tryptase or histamine level: https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm and be sure to follow the strict handling instructions for the 24-hr urine and some of the blood samples: http://mastcellresearch.com/what-is-mastocytosis/afrin-instructions-for-24hr-urine-collection-for-mast-cell-mediator-testing-2/. I take quercetin, vitamin C, and some other supplements, and avoid triggers - all of which help. I tried cromolyn but couldn't tolerate it. I might go back to it. I also have children's dye-free Benadryl on hand just in case (I take TINY amounts) and an H2 blocker very rarely. Read around; there are lots of great resources out there. Avoiding triggers, and then taking H1 (like Claritin or Allegra) and H2 blockers (like Pepcid) is the first line treatment - but you should so what's best for you and talk to your doctor(s).

On 10/10/2019 at 2:53 AM, rapunzel2 said:

Hello!

 

I just wanted to say that I'm also suspecting a mast cell activation disorder myself (having histamine reacions) - and it also started when I jumped off seroquel that I had taken for years. I think seroquel is such a strong antihistamine, it can mess with mast cells/histamine issues. also, I developed thyroid problems, slight hypo. 

 

I hope you will get better!

 

Hi, Rapunzel.

 

I'll quote what I just told Gigi:
If anyone is looking to get diagnosed, make sure the practitioner follows this protocol and doesn't just test ONLY your tryptase or histamine level: https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm and be sure to follow the strict handling instructions for the 24-hr urine and some of the blood samples: http://mastcellresearch.com/what-is-mastocytosis/afrin-instructions-for-24hr-urine-collection-for-mast-cell-mediator-testing-2/. I take quercetin, vitamin C, and some other supplements, and avoid triggers - all of which help. I tried cromolyn but couldn't tolerate it. I might go back to it. I also have children's dye-free Benadryl on hand just in case (I take TINY amounts) and an H2 blocker very rarely. Read around; there are lots of great resources out there. Avoiding triggers, and then taking H1 (like Claritin or Allegra) and H2 blockers (like Pepcid) is the first line treatment - but you should so what's best for you and talk to your doctor(s).

[NorthStar]

And an update on my taper...

 

I've been taking it verrrrry slowly as I navigate these health issues:

- Throughout the fall of 2019 and early winter 2019/2020, I tapered Gabapentin from 250mg to ~130mg - using the pharma. scale to taper about 10% of the previous dose each month. I did drop down to 100mg in January, but that was too quick and so I went up to 130. I'm now taking 130mg at night. Very occasionally, I will have to take a PRN of 30 mg if my POTS and/or anxiety is bad. But this is rare.

- I held Gabapentin 2-3 months before recommencing the Klonopin taper (which I hadn't adjusted since Spring/Summer 2019).
- Klonopin has been slower. I've done minuscule drops in doses starting in March 2020 (0.4 -> 0.384 -> 0.37 -> 0.355). I'm taking 0.1 mg in the morning and 0.355 mg at night right now and will likely hold until after surgery.

- I have had to take 5-10mg propranolol PRN when POTS is raging, but I use it very sparingly as it lowers my BP too much. Trying to stay ahead of the MCAS helps avoid this.

 

I'll update my signature. Cheers, all.

[JoJo90]

On 6/20/2020 at 2:53 AM, NorthStar said:

 

Hi, JoJo.

 

I'm sorry you're having issues. These nebulous conditions are tough to diagnose and get taken seriously.

 

For my part, we're still working on getting answers. It's been a LOT of testing and scares (three cancer scares and biopsies) and diagnoses and undiagnoses, which I don't want to go into completely right now. I feel pretty upended from all the medical trauma. I'll say this much...

 

I definitely have MCAS - confirmed with lab testing. If anyone is looking to get diagnosed, make sure the practitioner follows this protocol and doesn't just test ONLY your tryptase or histamine level: https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm and be sure to follow the strict handling instructions for the 24-hr urine and some of the blood samples: http://mastcellresearch.com/what-is-mastocytosis/afrin-instructions-for-24hr-urine-collection-for-mast-cell-mediator-testing-2/. I take quercetin, vitamin C, and some other supplements, and avoid triggers - all of which help. I tried cromolyn but couldn't tolerate it. I might go back to it. I also have children's dye-free Benadryl on hand just in case (I take TINY amounts) and an H2 blocker very rarely. Read around; there are lots of great resources out there. Avoiding triggers, and then taking H1 (like Claritin or Allegra) and H2 blockers (like Pepcid) is the first line treatment - but you should so what's best for you and talk to your doctor(s).

 

Incidentally, I was tested for mold in my urine, and my levels were the highest my doc had ever seen. We since found a ton of mold in 2 of the places we've lived in the last 2 years - and did remediation in our current house. Once we move back in, I'll be doing treatment for that. That can trigger mast cell issues.

My thyroid was outright hyperactive a year ago, then went borderline underactive, and has been doing weird swings - within the course of a day - btw TSH and my T3 and T4. I have antibodies but almost all are too low to be positive. My TPO and anti-thyro. antibodies just went above normal, so I definitely have autoimmune thyroiditis, which is likely causing some thyroid hormone surges (makes tapering very difficult). I also have 2 nodule and one of them is likely autonomous - giving off hormone - so I am having that nodule removed. But I had to go through several endocrinologists before I found one that put all the pieces together - and even then I was pushing to look at my uptake scan and ultrasound images throughout the appt. I am hoping that doing that, by removing the autonomous nodule, treating my MCAS, addressing the mold, and continuing to taper, I will help the thyroid issues. I can't take thyroid hormone b/c my hormone levels are too all over the place.

I might not have EDS after all. There's debate. But it really doesn't matter as treatment involved PT which I am doing anyway.

 

I have had soooo many scans, an endoscopy and colonoscopy, and nothing definitive has come up on the GI stuff. I am waiting on another scan result, though.

I HAVE been diagnosed with a parathyroid issue (these glands are found on the back of the thyroid, usually, and regulate calcium in the blood). It runs in the family and we're wondering if this isn't want tipped the scales when I started having issues postpartum. My parathyroid hormone has been elevated in conjunction with an inappropriately elevated ionized calcium, and low vitamin D 25 but higher vitamin D 1,25. It's usually a simple fix - surgery to remove the overactive glands (you usually have four and can survive with 1/2 a gland if it's overactive). But it's very difficult to find a doctor who know how to diagnose this - and it took almost a year. What tipped the scales was being diagnosed with osteoporosis last winter (which otherwise made no sense). My numbers are also all over the place, but aberrant enough to warrant surgery (in tandem with the bone density issues).

 

So I am having parathryoid surgery later this summer, at which time they'll remove the overactive thyroid nodule (I really hope that's all that will need to be removed), and some of the enlarged lymph nodes in the area. And then we'll have to see how I feel and where I'm at.

 

I'm also exploring some neurological/spine issues, which I'll save to go into for another day.

 

But it's been a grueling process to find answers. Scans, tests, misdirection, soooo many doctors. With the pandemic, everything has been - necessarily - put on hold and slowed down. I feel for everyone who has mental health, physical health (those are so indelibly connected, though) issues - especially now. A patient should not need to take this much initiative to find answers and get well. This whole ordeal has further impressed upon me the importance of a thorough physical work-up before delving into - or while on - psych medication, or any medication; they can be helpful but so can finding underlying causes of mental distress - be they endocrine issues, trauma, etc.

Good thoughts to all - 

 

Hello North 

 

It’s seems you have really been through it all! Despite all this though, I think knowing all of this is definitely an advantage. Mould can cause some horrible symptoms in itself, a gentle detox should slowly help with a functional medicine doctor.
 

I have some hard lumps just outside of my thyroid, my hormones have been doing some weird stuff too. (My TSH is normal but points to more hypo then hyper)  I can’t put on weight, my heart is always racing, and various other things. I was supposed to get an ultrasound, but still awaiting that because of covid.

 

It is funny you mention parathyroid, I was looking into that early this year, that can cause chaos, it’s like a broken thermostat that keep pumping out heat! When I got my calcium levels tested they were within normal range, as this worried me for a while.
I have read several stories where people’s lives were transformed after removing the affected parathyroid gland, it’s a quick op. Please keep us updated on that. The leading doctor in this https://www.parathyroid.com/about-parathyroid.htm - The Norman Parathyroid Center is the leading parathyroid treatment center in the world.  

 

I don’t know if you have come across him, I really have great faith that once that and the mould has been addressed, you will feel a million times better! 100%
 

Some of my issues are quite complex like yours, it’s a gruelling process but one that is needed to get back to full health, and to living a life we all so much deserve. WD is a battle on its own and when all these other health problems pop up with it, you feel so helpless. 
 

I have a spinal disorder called Scheuermann’s disease, so my physical pain lately is hard to distinguish between WD or my condition. I just know I never struggled so much with nerve pain everywhere, fatigue, headaches, etc last year. I have been off of AD’s 11 months now. 
Along with the copious other symptoms.

Seriously though I think you’re are going to do well.

Keep us updated please north as and when you can.

 

Jo

 

 

Edited September 24, 2020 by ChessieCat
unbolded

[Shelton]

@NorthStar - just came across your story! I am 4 1/2 months postpartum and my nervous system is a wreck due to postpartum changes. I’m so sorry they polydrugged you - there have been several times I’ve felt so bad I just wanted to go to the hospital for relief. It has been AWFUL dealing with this while trying to enjoy being a mother. I also have been out of work for 2 months (very stable, corporate career) and I’m on the verge of losing my job. 
 

how are you doing? 

[NorthStar]

Hi, everyone.

 

I am going to provide an update here. I cannot promise I will respond to all comments; I am, like many of you, navigating many heath and other personal issues that cause discomfort and dysregulation, and compromise my ability to be both active consistently on this (wonderful, life-saving) site and keep my head above water. The pandemic has made all of this so much harder.

 

Someone PMed me today, and I thought I'd share some of the thoughts and recommendations I shared with them here for everyone.

 

You can go into my past updates to see my journey over the past few years since my kiddo was born--and further back into my adolescence, when I was first on antidepressants. I am not going to relay all of that now.

 

Recap and Update

In the past three years, I have discovered a lot about my body that contributed to the tumultuous postpartum period I experienced immediately after my kiddo was born in spring 2018--most notably that I was born with a condition called Congenital Fatty Filum Tethered Cord. The condition predisposes me to dysautonommia, mast cell disease, anxiety, depression, and other conditions that contributed to why I felt I needed to go on antidepressants when I was an adolescent (more on that below) -- and why, when my spinal cord was stretched during labor and delivery, things worsened postpartum, leading to that multi-month run of med trials. It's not the ONLY reason; but it is a big one.

 

For now, I am still tapering from Gabapentin and Clonezapam, which is going well.

 

When I went into labor in 2018, I experienced intense dysregulation and pain (typical). But even after my kiddo was born, the dysregulation stayed. I had on/off adrenaline rushes, appetite loss, severe leg cramps, restless legs, and orthostasis (which would turn into POTS as I went on/off meds later). I lost a lot of weight, not fully understanding why. I felt like I had lost all control over my body (I still feel like this often).

Some of those issues predated the pregnancy and postpartum period, but were much, MUCH more mild then.

 

I was struggling to sleep as a result of the rushes, and was often jolted awake on my own. I was also navigating breastfeeding, a move, past trauma, and motherhood. I had experienced anxiety and insomnia before; this was different -- I felt it in my heart and brain.

 

In the summer of 2018, as I starting trying medications (or retrying medications I was on pre-pregnancy) to help with what I thought was severe anxiety (and that was certainly present -- but, at the time, I could not decouple it from the dysautonommic syndromes I was experiencing, like orthostasis and eventually POTS). These conditions grew much worse as I went/off different meds. I won't go back into all that here (again, it's in this thread).

Then, 9 months into medication trials, I started having thyroid issues out of the blue in spring 2019 (possibly from one of the meds I was on briefly, or a virus, or stress - it's autoimmune thyroiditis, so I have both an under- and overactive thyroid). The acute overactive (hyper) thyroiditis lasted 3 months, before becoming slightly underactive for 3 months. I was technically negative for Graves and Hoshimoto's, but have some other thyroid antibodies. My thyroid has calmed down but remains an issue (especially when under stress or exposed to illness), which I cannot medicate b/c it's both over- and underactive.

 

In Fall 2019, I started doing research on my growing dysautonomic and neurological symptoms, and discovered mast cell disease. I sought out a local expert and underwent many, many urine and lab tests and was diagnosed with Mast Cell Activation Syndrome (MCAS). I have not responded well to cromolyn sodium (a common treatment, which I have trialed several times), but I do take a small amount (0.5mg) of ketotifen each night, and then less PRN if I am having a mast cell reaction. Vitamin C and some other supplements help, too, but I have yet to find a consistent 'safe' food list or med/supplement regimen that controls this condition. Many others have, though. Mast Movement on FB (https://www.facebook.com/groups/674216919304391) is a good group if you want help navigating the testing and treatments for mast cell conditions.

 

That same fall, as I started experiencing muscle wasting in my hands and legs, increased tingling in my limbs, odd pressure headaches, and other neurological issues, I read about a condition called Tethered Cord. I had a gut instinct, and asked a neurologist for a lumbar MRI. I also did an upright flexion/extension MRI to assess for instability and slipped discs in my neck. It took me months to summon the courage to send my scans to the few experts in these conditions that exist...

 

The tethered cord diagnosis was confirmed by ALL neurologists/neurosurgeons (when do doctors ever agree on something?). The condition can remain asymptomatic or subtle for years or decades; some clinicians still hesitate to diagnose it in adults because they are accustomed to seeing severe cases in children (toe walking, loss of mobility, etc.), and there is a supposition that, if you are born with a structural issue, it will automatically and immediately present itself. It is being increasingly recognized that tethered cord (and other structural issues like Chiari) can be triggered into an overtly symptomatic stage due to events like pregnancy and childbirth, stress, injury, etc.

 

I suspect one reason I had anxiety, depression, and OCD so young and into adulthood was because of this condition (it is very well established that depression, OCD, anxiety, etc. are disproportionately common in kids born with tethered cord).

 

The clinicians also agreed I had instability in my neck (probably acquired after my kiddo was born), as well as some minor slipped discs (also acquired more recently).

 

In the Fall of 2019/winter of 2020, I was also diagnosed with hypercalcemia, hyperparathyroidism, and osteopenia. I underwent a partial parathyroidectomy in 2020. The surgery did not help any of my dysregulation issues, and I have not yet had a bone density scan to see if my bone density has improved. Instead, following the surgery, my neurological issues worsened, likely because of the position my neck was in during the procedure.

 

I've had additional scans since then, and have now been diagnosed with cranial-cervical instability (CCI) and atlanto-axial instability (AAI); these conditions were most certainly acquired, I suspect from the stress and strain I put my body under through the pregnancy, postpartum period, med trials, subsequent inflammatory health issues, and endocrine surgery.

 

I had neurosurgery in the Fall of 2021 to correct the tethered cord. For many, this surgery is life-changing. For me, because of the trauma from the last few years, as well as other structural/neurological issues, I am still having neurological/dysautonomic problems. I have ongoing issues controlling my mast cell condition, and the conditions in my neck (CCI and AAI) are growing worse. I will probably need more surgery.

 

Going on/off all those meds 2018-2019 made things worse, certainly. But it was the compounded impacts of the stress of that time, the med trials, and the medical conditions (like MCAS and thyroiditis) that were undoubtedly causal to my dramatic physical decline. I think going on/off these meds is very hard on the body and can trigger conditions we were genetically or otherwise preconditioned for (or were already born with).

 

What would have happened if a doctor or clinician had known about tethered cord, that it can be triggered by pregnancy or delivery, and that it fit my medical history? Or if they had known about mast cell activation, and its connection to hormone drops following pregnancy? Would I have fallen into the 6-9-month med trial trap and trauma I went through? I cannot know for sure -- but I do not think so.

 

It cannot be solely on us 'patients' to research and discover our own underlying issues. And we should not, in turn, be mocked for it by clinicians who would rather be judgmental than curious or helpful.

 

For now, I am holding steady on morning: 0.1mg Clonazepam; night: 100mg Gabapentin, 0.2mg Clonazepam, 1.5mg LDN, 3-5mg melatonin. And I take a variety of supplements throughout the day, not all everyday; the more frequently taken ones include Vitamin D3 (3,000 - 6,000 throughout day), calcium, magnesium, vitamin C (500-1000mg 2-4x/day), evening primrose oil, probiotics, sacc. boul., digestive enzymes.

 

My recommendations if you seem like me:

- Do a thorough endocrine work-up: Thyroid (T3, T4, TSH, all thyroid antibodies, etc.), neuroendocrine tumor (NET) testing (many urine and blood tests), sex hormone levels (pertinent to your sex and age), and anything else that could contribute to your symptoms. All of my testing was covered by insurance.

- Get assessed for Mast Cell Disease (many blood and urine tests). Mast Movement on FB (https://www.facebook.com/groups/674216919304391) is a good group that can help you through the process, and find a clinician to order the tests for you. All of my testing was covered by insurance.

- After (or in lieu of) the Mast Cell assessment, consider an elimination diet to figure out what foods contribute to 'bad' symptoms, and which trigger feelings of regulation. This can take a looooong time, and your 'trigger' and 'safe' foods might change over time.

- Get an assessment by a neurologist. Find one who is willing to do a thorough exam. If you have consistent twitching and muscle loss, I would find one that will order an EMG of your legs and you upper body, or wherever your issues are manifesting. I've had both done, and they found nothing -- but it's important to rule out/in other conditions.

- Do research on ME/CFS, tethered cord syndrome, cranial-cervical instability, atlanto-axial instability, and related conditions, and see if any of the conditions resonates for you. If you can find a doctor to order a full spine MRI, do it - and then send to a neurosurgeon knowledgable in these conditions. This is a good resource for finding other clinicians and navigating the diagnostic process: https://www.facebook.com/groups/1353765701467793.

- Be patient with yourself. For me, I try to rest as much as I can, and do as much light exercise as I can, and eat healthy protein. I have to have protein of some kind with every meal or I get the adrenaline rushes.

 

Best of luck and well wishes to you all!

[NorthStar]

I should add that I am not authorized to give medical advice, nor am I a medical professional. The above just details what testing/avenues of investigation have proven helpful or meaningful in my journey, especially these past few years. Everyone is different, and a person's needs, circumstances, and opinions change, too.

 

[LadyBartonella]

On 3/22/2023 at 8:01 PM, NorthStar said:

 

 Hi,

 

(I m not native english, if you don't understand, ask )

 

I am also diagnosed with mcas. I think I had this before taking SSRI and that is why I reacted on them with serious conditions.

Doctors kept me on them anyway and they added clonopin for 3 months (it stabilised mcas). Then I was deregulated again with tapering, but then clonopin worked paradoxical.  Like other stories here all went wrong.

 

I take quercetin, perilla seed, resweratrol. I used to have great benefin from h2, but somehow now it helps one day and the next I have big intense wave (depersonalisation, panic, ect). I don't understand how to stabilise it when we are sensitive due to WD and mcas.

 

Second: I am diagnosed by Grain Plain Labs with mold! Also I am sensitive to binders. I often go in flare in spirng and end of August (mold growing? ). Flares looks like WD, so I have trouble to different them. Egz. Yesterday at 10:00 I was suicidal, then 13.00 I was fine. Waving is brutal. During flare I sleep only 2-4 hrs a day. Do you know that bcs of mold people get neck destabilisation ? Check inteview with Nathan: https://www.betterhealthguy.com/episode122

 

 

I am also diagnosed with Bartonella which is well know to give ppl : intrusive thoughts, depression, burning body, skin. You did mentioned about losing muscles . Its also common with bartonella. As bacteria is also fluctuate. So its so similar to WD too. Also this bacteria and mold are making people sensitive to drugs. 

 

What to do then?

* I taper drugs and feel quite good, but usual till march ( mold growing? )

* kill Bartonella

* SSRI are not compatible with MCAs, They degranulate them a lot, so best way would be stop, but as we know this website it can be dangerous too.

 

I PM you anyway, so we can discuss more,

 

 

 

 

 

[Lauren90]

Hi! Has your akathisia/restlessness improved at all?