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Remarkable relief from benzodiazepine

Dmitri

Senior Member
Messages
219
Location
NYC
This is about my mother rather than myself. Her state has gotten very severe to the point where she's bedridden. Her diagnostic history includes POTS, Sjogren's, MCAD, CFS, fibro. She has disabling spasms in her GI tract, along with inflammation upon contact with food or water, which limits her ability to eat or drink. She can't stand or even sit because of POTS and worsening of spasms. Her lips are severely inflammed and develop a very large, dry crust after each reaction.

When she takes ativan, she quickly gets relief - POTS goes away, constipation goes down, ability to eat and drink more freely, ability to walk, etc. Most surprising of all is how the inflammation in her mouth and lip areas go away and no longer react upon contact with water or other things.

There's a big problem with receiving it, especially since she can only tolerate it through IV. Like me, she reacts badly to all oral medication. The only way she can receive it is in the hospital, and it often reaches a point where she has no other choice due to flares in severity. She often gets treated terribly by attending physicians once she's admitted and discharged rapidly, sometimes even accused of being a drug seeker.

Worse, this gives doctors more ammunition to use for psychosomatic accusations since, in their own expert words, it's "just a mental drug" or "only helps anxiety". They are clueless about the spasmolytic and other effects of benzos and will deny that there are any. Earlier this year she's gotten more severe after she was forcibly admitted to a psychiatric ward when doctors made false accusations and completely ignored all her symptoms and diagnoses. It took a while to get her out.

I've searched the forum and found other patients reporting that benzos help them. I'm looking for more info as to what the possible mechanism could be. It obviously relieves spasms, which themselves could also be causing inflammation and ANS symptoms, but could there also be some neurogenic inflammation at play?
 

Rufous McKinney

Senior Member
Messages
13,249
Most surprising of all is how the inflammation in her mouth and lip areas go away and no longer react upon contact with water or other things.

I get intense daily swelling of the mouth, lips, palette, my teeth being pushed out, my dry sinus squeezed, my eyes: blurr and pour mostly.

so when that is more acute my lips swell up. My tongue- its awful: see my chinese medicine doctor. It does't even fit inside my mouth: during acute swellings.

This might be angiodema. It might be somehow involved in an MCAS-like thing. I simply- have managed to not get anywhere with doctors on any of this.

Thats me, maybe you can find some better help. I really don't know why an Ativan would affect these types of symptoms- but somebody else around here just might have ideas.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
She often gets treated terribly by attending physicians once she's admitted and discharged rapidly, sometimes even accused of being a drug seeker.
It would help enormously if you could find a Dr, ANY Dr, who'll write a prescription for it, based on neuro-muscular issues.


You might do better to switch her to Valium (diazepam),another excellent muscle relaxant benzodiazepine, which has a much longer half-life than Ativan, and therefor builds up tolerance more slowly. It would also lengthen the time between the necessary IV's.

I'm so sorry that your mother is being subjected to this almost predictably narrow and reductionist medical 'thinking'. It's disgusting.
Worse, this gives doctors more ammunition to use for psychosomatic accusations since, in their own expert words, it's "just a mental drug" or "only helps anxiety".
Yeah. Like they need any. They're herd-thinkers, and rarely step out of the current received wisdom. Sadly, when it comes to ME, the received wisdom often revolves around vilifying, demeaning, and dismissing the patient, alrgely because Drs neither understand this illness nor are willing to take some time to do a little research and extra-credit learning.
They are clueless about the spasmolytic and other effects of benzos and will deny that there are any.
This is both astonishing and horrifying.


I'm not a big fan of benzos, which can do absolutely unlimited damage, but I would hvae thought that it would be hard to find even a first-year medical student who didn;t know that Ativan, Valium etc are all huge muscle relaxants, and effective at hugely reducing or eliminating spasmolytic episodes, so this news is both stupefying and abslutely terrifying.

WTF are these bozos learning in medical school .... it truly boggles the mind ....
Earlier this year she's gotten more severe after she was forcibly admitted to a psychiatric ward when doctors made false accusations and completely ignored all her symptoms and diagnoses. It took a while to get her out.
Omigod ..... I wish thatI could say that I was stunned by this, but sadly, a lot of members here have experience with exactly this kind of thing, both in the US and the UK. It's shameful, it's disgusting, it's reckless endangerment, and it's malpractice.


I don't know how old you mom is, but benzos DO have, and are capable of producing, some extremely distressing side effects, particularly when you reach tolerance withdrawal.

That's a problem for another day. If they're the only thing that helps her, they're required medication, and anything subsequent can be dealt with down the road. Just be alert to signs of increased muscle twitches, anxiety, insomnia, possibly mild hallucinations. And come back here and talk about it to us ..... a lot of us have deep understanding and experience with these medications, and are extremely sympathetic to those suffering their side-effects....

You're a good son, @Dmitri :thumbsup::thumbsup: :hug: ...
 

Gingergrrl

Senior Member
Messages
16,171
@Dmitri I apologize this reply is quick but benzodiazepines are also mast cell stabilizers and you mentioned that your mom also has MCAS. I can try to find links for this later if it would be helpful and this is another possible mechanism of what is going on. I will say a prayer for your mom and am so sorry to hear how much she is suffering.

Edit: I cross posted with everyone else b/c I was typing so slow!
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
Could be as Ativan increases GABA which can damp down inflammation.
Hi there AxeMan ....


That's a common misapprehension. Ativan, or any other benzo including the new 'Z' drugs, do NOT increase GABA. It produces almost all of its pharmacologic action by enhancing and stimulating the effects of both endogeous and exogenous sources of GABA which are mediated by GABAa receptors.

This creates the gradual, sometimes rapid, destruction of GABAa receptors, which is when tolerance withdrawal sets in, since your system is no longer producing its own GABA, having been supplanted by artificial, pharmacological sources upon which it's become entirely reliant.

This is what makes benzos so dangerous and potentially damaging.

But in this case, that's a problem for another day .... right now, they're an actual treatment for symptoms that cannot be ameliorated any other way.
 

Dmitri

Senior Member
Messages
219
Location
NYC
I get intense daily swelling of the mouth, lips, palette, my teeth being pushed out, my dry sinus squeezed, my eyes: blurr and pour mostly.

so when that is more acute my lips swell up. My tongue- its awful: see my chinese medicine doctor. It does't even fit inside my mouth: during acute swellings.

This might be angiodema. It might be somehow involved in an MCAS-like thing. I simply- have managed to not get anywhere with doctors on any of this.

Thats me, maybe you can find some better help. I really don't know why an Ativan would affect these types of symptoms- but somebody else around here just might have ideas.

For her, it appears to start with spasms, then swelling and redness (particularly in the lips), then bursting and releasing liquid that further dries and irritates the lips and starts the vicious cycle anew with more severity. Ativan stops this cycle and her lips heal for as long as she's on it. The symptoms begin with the mucosa and then spread everywhere else.

This is how the crust that develops on her lips typically looks:

1597199594024.png

Would be interesting to see how one of these medications affects your swelling if you ever get the chance to experiment.
 

Gingergrrl

Senior Member
Messages
16,171
@Dmitri Has your mom had a lip biopsy for Sjogrens? Have they also tested a sample biopsy of her lips for mast cell markers (during an episode)?

Edit: Also have they tested a biopsy of her lips for other pathogens (virus/ bacteria/ fungal, etc) and for other auto-antibodies?
 
Last edited:

Dmitri

Senior Member
Messages
219
Location
NYC
It would help enormously if you could find a Dr, ANY Dr, who'll write a prescription for it, based on neuro-muscular issues.

You might do better to switch her to Valium (diazepam),another excellent muscle relaxant benzodiazepine, which has a much longer half-life than Ativan, and therefor builds up tolerance more slowly. It would also lengthen the time between the necessary IV's.

I'm so sorry that your mother is being subjected to this almost predictably narrow and reductionist medical 'thinking'. It's disgusting.

Definitely, and each hospital trip raises my disgust at the medical system. There were a few times when she was discharged with a prescription for oral ativan pills, but she can't take them. And nobody appears to be willing to prescribe IV ativan at home. She hasn't been able to see any of her specialists in more than a year due to being bedridden. The trips to the hospital are also very difficult and take a toll on her overall health, but they're the only rescue available.

This is both astonishing and horrifying.

I'm not a big fan of benzos, which can do absolutely unlimited damage, but I would hvae thought that it would be hard to find even a first-year medical student who didn;t know that Ativan, Valium etc are all huge muscle relaxants, and effective at hugely reducing or eliminating spasmolytic episodes, so this news is both stupefying and abslutely terrifying.

WTF are these bozos learning in medical school .... it truly boggles the mind ....

Based on the countless times this controversy arose, I would say the majority of attending doctors at hospitals are clueless about benzos and that their uses go beyond "anxiety". And these are doctors associated with the boastful and "prestigious" Weill Cornell Medical Center. If I try to remind them of the common knowledge about ativan having spasmolytic properties, they can get confrontational with their response being a variation of "muh medical degree".

And I agree, it's unfortunate that the only relief discovered so far from these very threatening symptoms comes with so much risk. If the doctors even did a fraction of their job, they would try to investigate and collaborate to find out what's going on, and maybe even find a safer solution. But why bother with even a slightly complicated case when it's easier to just tell the patient to fuck off and see a psychiatrist or accuse them of being a drug seeker.

Her lips and mucosa start dissolving and becoming red upon contact with water. Even her skin starts reacting to water now. During one of her recent hospitalizations, a GP who discharged her said "Allergy to water is impossible, we are made up of mostly water. You should see a psychiatrist"
 

Gingergrrl

Senior Member
Messages
16,171
"Allergy to water is impossible, we are made up of mostly water. You should see a psychiatrist"

This is patently untrue and I am so tired of these effing doctors who dismiss allergic reactions. There is aquagenic urticaria and pruritis. How does your mom react to IV Benadryl? Also, has she been tested for eosinophilic esophagitis?
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
If I try to remind them of the common knowledge about ativan having spasmolytic properties, they can get confrontational with their response being a variation of "muh medical degree".
Yeah. Drs love to be confronted with their own ineptitude, and often, ignorance. It puts a real spring in their contemptuous dismissals ....

In truth, I have a good deal of sympathy for many Drs ..... the current environment of ceaseless govt intrusion the great teetering stacks of insurance forms, questionnaires, and challenges to proposed treatment in favor of cheaper, possibly even inappropriate alternatives, the Byzantine worlds of Medicare and Medicaid ..... a Dr barely has time to see patients, let along have patience with their patients. Sorry. Couldnt stop myself ...

But for a depressingly great part of the population, they just don;t give a crepe. The didnlt become Drs to be healers, or to save people, or to help the sick and vulnerable ..... they became Drs to get respect and a good table on Saturday night and to get as rich as the traffic would allow.

The thought of actually researching a mysterious, idiosyncratic illness that presents with wildly different symptoms from patient to patient is as foreign to them as respecting them would be to us.
But why bother with even a slightly complicated case when it's easier to just tell the patient to fuck off and see a psychiatrist or accuse them of being a drug seeker.
The odd alternative to this are the Drs who ply those patients with drugs that will not only not help, but can do serious, grievous, profound, and sometimes, lifelong or lethalharm..... anti-d's, anti-anxiety meds (where they aren't indicated by actual symptoms, as in your mother's case), anti seizure drugs with off-label uses as anti-anxiety meds, great handfuls of hypnotics, anything to get pharma credit for another Rx and to get the complaining, whining (their view, not mine) patient out of their hair and out of their exam room ....


You hvae my deep and sincere sympathy. It's not an easy road. The hard part is not just bitch-slapping them to pulp on a bad day...
 

Dmitri

Senior Member
Messages
219
Location
NYC
https://www.mastattack.org/2014/10/mcas-treatment/

This is an old blog post from Mast Attack (Lisa Klimas) re: different mast cell medications based on the research of Dr. Lawrence Afrin. Around paragraph eight she talks about Benzos.

Thanks for the link. I'll quote the paragraphs so the info is immediately available here:

Benzodiazepines are often helpful in MCAS, due both to its action on mast cells and also directly on organs, particularly GI organs. Lorazepam, clonazepam and alprazolam are preferred due to their shorter window of action. All can be dosed beginning at 0.25mg every 12 hours, increasing by 0.25mg twice daily every week. Flunitrazepam has been described in treatment of mast cell disease. This medication has a longer halflife and is generally dosed at 0.5-2mg once a day.

Imidazopyridine medications like zolpidem (Ambien) also act on the benzodiazepine receptors of the body. Though usually taken for insomnia, some MCAS patients report relief of other symptoms. Whether or not these medications work in a patient seems independent of whether benzodiazepines are currently being taken by the patient or have worked or failed in the past.

Here's a few others I found in the past:
https://www.mastzellaktivierung.info/downloads/SIGHI_Medication_Manual_PREVIEW.pdf

Mast cell activation by neuronal excitation or irritation In some people mast cells, eosinophil granulocytes and lymphocytes are overly sensitive to the excitation of nerve cells in the vicinity (mediator release by neuronal effector cell triggering). Treatment options: Stress reduction, relaxation techniques, sedative antihistamines of the first generation (page 25), low dose benzodiazepines 1 to 2 times a week (see page 50, e.g. oxazepam, diazepam).

https://www.drtaniadempsey.com/post/mast-cell-activation-syndrome-mcas-covid-19-coronavirus

4. Benzodiazepines address not only inhibitory benzo receptors on the neurons but also inhibitory benzo receptors on the mast cells (it's a topic for another day as to what fraction of the "idiopathic anxiety/panic attack" population frequenting emergency rooms and psychiatrists' offices have unrecognized MCAS), and I wouldn't hesitate to start a moderately ill Covid-19/MCAD patient on regular (at least bid-tid, perhaps even qid) dosing of a benzodiazepine (oral or IV; dosing typically is equivalent between the two routes). Lorazepam or clonazepam could be started at 0.25-1 mg, and I probably would not push any individual dosing past 2-3 mg; diazepam dosings could be started at 5-10 mg, probably not to be pushed past 20 mg. There's evidence that flunitrazepam has much better affinity than the other commercially available benzodiazepines for the benzo receptor on the mast cell, so in Europe and other (non-U.S.) places where that benzo remains available, flunitrazepam 1 mg bid-qid, with or without additional lorazepam or clonazepam at 0.5 mg, would be quite reasonable to try on a bid-qid basis (in addition to the H1 and H2 blockers, of course.

@Dmitri Has your mom had a lip biopsy for Sjogrens? Have they also tested a sample biopsy of her lips for mast cell markers (during an episode)?

Edit: Also have they tested a biopsy of her lips for other pathogens (virus/ bacteria/ fungal, etc) and for other auto-antibodies?

That might have provided a lot of useful info, but it has gotten to the point where even if they offer a test like that, it would be way to risky since even lightly touching the lips now provokes reactions. Her MCAD and AI diseases were diagnosed long ago via blood tests. Paradoxically, her ANA is lower now in her very severe state than it was back then. 1:320 compared to higher than 1280 in the past. Anti-centromere antibodies were also positive recently.

She's had benadryl and pepcid via IV not long ago, and they just made her drier and worsened the spasms. She was given cromolyn by mouth but it just caused really bad burning.
 

Gingergrrl

Senior Member
Messages
16,171
My last thought was if she has tried Ketotefin or Atarax but I don’t think either come in IV form.
 

Hip

Senior Member
Messages
17,824
Her lips and mucosa start dissolving and becoming red upon contact with water. Even her skin starts reacting to water now. During one of her recent hospitalizations, a GP who discharged her said "Allergy to water is impossible, we are made up of mostly water. You should see a psychiatrist"

Have you tested with distilled water, to see if the reaction is to water itself, or something in the water? Does your tap water supplier put chloramine into the water by any chance? This can be an irritant. See my thread on chloramine.
 

Gingergrrl

Senior Member
Messages
16,171
@Dmitri I have been thinking about your mom’s situation all night and am not sure if she has already tried this but there are orally dissolving tablets (ODT) versions of most Benzos and I believe there is one for Ativan. It dissolves in the mouth without having to drink any water and without having to swallow it like a pill.
 

Dmitri

Senior Member
Messages
219
Location
NYC
Have you tested with distilled water, to see if the reaction is to water itself, or something in the water? Does your tap water supplier put chloramine into the water by any chance? This can be an irritant. See my thread on chloramine.

She can't tolerate any liquid, and stopped drinking even filtered tap water. She drinks bottled water in small amounts. Tried experimenting with other liquids, juices, milk, etc. but they are all too reactive. It appears that the water here is treated with chlorine, not chloramine.

@Dmitri I have been thinking about your mom’s situation all night and am not sure if she has already tried this but there are orally dissolving tablets (ODT) versions of most Benzos and I believe there is one for Ativan. It dissolves in the mouth without having to drink any water and without having to swallow it like a pill.

Anything that goes in the mouth, both swallowed and ODT, cause bad reactions, since the entire GI tract starting from the lips is so sensitive. A pill staying in the mouth and dissolving would react with the mucosa too much. If only these hospitals had IV cromolyn.

My mom was discharged from the hospital today after a stay of several days. Just when something significant was set in motion-- the attending rheumatologist said that a specialist who might have answers will be evaluating her. But the internal medicine resident team forced her discharge. Unfortunately, disputing the discharge wasn't an option because she was no longer being given ativan post-discharge, and the hospital's cold, drafty environment triggers her spasms and inflammation when she's not on medication. It would take a while to dispute anything, and that means staying in the hospital without any protection.

She had no choice but to go along with the discharge and be transported back home. This same problem has repeated itself so many times.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
This is about my mother rather than myself. Her state has gotten very severe to the point where she's bedridden. Her diagnostic history includes POTS, Sjogren's, MCAD, CFS, fibro. She has disabling spasms in her GI tract, along with inflammation upon contact with food or water, which limits her ability to eat or drink. She can't stand or even sit because of POTS and worsening of spasms. Her lips are severely inflammed and develop a very large, dry crust after each reaction.

When she takes ativan, she quickly gets relief - POTS goes away, constipation goes down, ability to eat and drink more freely, ability to walk, etc. Most surprising of all is how the inflammation in her mouth and lip areas go away and no longer react upon contact with water or other things.

There's a big problem with receiving it, especially since she can only tolerate it through IV. Like me, she reacts badly to all oral medication. The only way she can receive it is in the hospital, and it often reaches a point where she has no other choice due to flares in severity. She often gets treated terribly by attending physicians once she's admitted and discharged rapidly, sometimes even accused of being a drug seeker.

Worse, this gives doctors more ammunition to use for psychosomatic accusations since, in their own expert words, it's "just a mental drug" or "only helps anxiety". They are clueless about the spasmolytic and other effects of benzos and will deny that there are any. Earlier this year she's gotten more severe after she was forcibly admitted to a psychiatric ward when doctors made false accusations and completely ignored all her symptoms and diagnoses. It took a while to get her out.

I've searched the forum and found other patients reporting that benzos help them. I'm looking for more info as to what the possible mechanism could be. It obviously relieves spasms, which themselves could also be causing inflammation and ANS symptoms, but could there also be some neurogenic inflammation at play?

Something to look into and or consider could be a transdermal benzo where its applied to the skin and factors help the drug to be delivered through the skin. Its usually much slower to work then IV meds. I cant say ive heard of transdermal benzos but compounding chemists can make most drugs into a transdermal medication. That way it can be something that helps her flares without having to go to hospital??