Remarkable relief from benzodiazepine

[Gingergrrl]

She can't tolerate any liquid, and stopped drinking even filtered tap water. She drinks bottled water in small amounts.

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.

I was curious since your mom can drink bottled water in very small amounts, has she tried dissolving the ativan (probably the ODT) into the bottled water and drinking it in one sip (so it would not stay in the mouth for the minute that the ODT tablet would normally dissolve)?

If only these hospitals had IV cromolyn.

Back when I was trying everything under the sun to stop anaphyalxis reactions in 2015, I tried nebulized cromolyn. It did not work for me (no cromolyn products helped in my case), but they work really well for many people and the nebulized form is another method that avoids swallowing a pill. Although now that I think about it, it would still irritate the nose and mouth. This probably is a bad idea but I wanted to mention it just in case.

 

[Dmitri]

Can you leave a message with the hospital to ask the doctor for that specialist's name? Some doctors work both in and out of the hospitals. Maybe she can still go to that specialist for the evaluation.

There is a video visit scheduled for a post-discharge appointment with a rheumatologist, probably not the same one. I couldn't get their name. Video visits are the only type of visit possible due to the bedridden status. She was offered to go by ambulette, but that requires sitting, which wouldn't be possible due to severe OI.

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??

Definitely safer than oral, but if it's gotten to the point where even skin contact with water triggers hives, it will most likely still trigger a reaction. Might have been an option before it got less severe. And if getting IV benzos is so difficult, I can imagine the transdermal option being even harder to get ordered.

I was curious since your mom can drink bottled water in very small amounts, has she tried dissolving the ativan (probably the ODT) into the bottled water and drinking it in one sip (so it would not stay in the mouth for the minute that the ODT table would normally dissolve)?



Back when I was trying everything under the sun to stop anaphyalxis reactions in 2015, I tried nebulized cromolyn. It did not work for me (no cromolyn products helped in my case), but they work really well for many people and the nebulized form is another method that avoids swallowing a pill. Although now that I think about it, it would still irritate the nose and mouth. This probably is a bad idea but I wanted to mention it just in case.

She dried dissolving other medications before she even got this bad and it didn't work. Even vitamin supplements caused reactions. With the very small amounts of water she does consume, it would be even worse since the medication would be more concentrated.

I have to correct myself, the cromolyn she received at the hospital was nebulized and really damaged her nasal and oral lining. Unfortunately, it does look like the list of options is only narrowing. It would be interesting if it turns out that these are primarily MCAD symptoms that are controlled by benzos where antihistamines fail. Like in you case, it does appear that the classes of medications for controlling MCAD are a hit or miss.

 

[lenora]

You and your poor mother must be exhausted....sorry!

Does you mother have a Dr. of her own? It could be a GP, Internist or Neurologist, especially the latter....explain the situation. An excellent idea about the patch as that may be the easiest answer for all concerned. I didn't realize that it even came that way.

Best of luck to both of you. Yours, Lenora.

 

[YippeeKi YOW !!]

An excellent idea about the patch as that may be the easiest answer for all concerned

Based on @Dmitri 's post, above, it will only be the easiest answer for the exasperated Drs, and will quite possibly trigger some potentially deeply unpleasant reactions for Dmitri's already highly reactive, sensitized, and struggling mom, and more emotional pain for Dmitri. There are many kinds of hell, but watching someone you love suffer and be demeaned and dismissed by Drs is one of the biggies.

Dmitri and his mother have a video apptmnt scheduled for a post-discharge appt with a rhuematologist, which will hopefully go well ... am holding a good thought for you @Dmitri .... it's past time for some concerned medical oversight for your mother, and some emotional relief for you, as well.

If its not too much right now Dmitri, please keep us posted, yes?

I didn't realize that it even came that way.

I'm not really sure it does, tho it would seem to be a good idea, generally speaking.

 

[Gingergrrl]

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.

I keep racking my brain trying to think of something that might help your mom and have a few more ideas/ questions for you.

1) You said that when she gets the IV Ativan, then she gets quick relief for a brief window in which she is able to tolerate contact with food & water.

So... I was wondering, when she was in the hospital and got the IV Ativan, was she ever able to try other mast cell meds within that brief window after getting the Ativan? I realize this requires having a supportive doctor on board (which is probably the biggest obstacle) but if she got the IV Ativan as a "pre-med" (the way that I had IV Benadryl when I was in the hospital for a week in 2015), then she might be able to "test" other meds (or foods) within that window.

I was wondering if she was able to test something like Ketotifen (mast cell stabilizer), or any other mast cell meds, while she was less reactive from the Ativan? If so, this might be something to ask the doctor.

----

My second thought, was has she tried injectable Benzos (at the hospital)? I believe that there is an injectable form of Ativan (although I am not 100% certain). If so, than this might be something that could be administered at home (vs. an IV) if you had a willing doctor to prescribe it.

When I left the hospital in 2015, it was not an option for me to have a PICC line or MID line to administer IV Benadryl at home (long story, won't get off-track) so it occurred to me to ask the doctors about injectable Benadryl and it turned out to be a great option and allowed me to safely leave the hospital without having anaphylaxis. At that time, I was able to use the injectable Benadryl at home 30 min prior to eating any food (along w/ 8-9 other pre-meds). In my case, I was never allergic to water so I was able to swallow meds with no problem as long as the meds did not contain dyes or other things that I was allergic to at that time.

I realize that doctors would be much less likely to prescribe an injectable Benzo than injectable Benadryl but am wondering if they would even prescribe a VERY small amount (even like one dose per week) so she could try it?

----

My last question (for now ) was how does your mom do with steroids? I am NOT endorsing them as a long-term solution, but has she ever gotten relief from the intense inflammatory/allergic reactions from Prednisone or Dexamethasone? I was just curious if steroids have brought her any temporary relief like the Ativan does?

Edit: Also does your mom have an EpiPen if her lips, mouth, throat, etc, were to close up from angiodema?

Edit #2: I wanted to add (in case it is helpful), that I ultimately found a solution in my case (Ketotifen, as mast cell stablizer, and Atarax as my "rescue med"). Then high dose IVIG re-set my immune system and I have not had an allergic reaction of any kind (let alone anaphylaxis) in over four years. But it was maddening trying endless things that did not work back at that time. I required other treatments to put the POTS and neuromuscular issues into remission. And I am having Endocrine problems that are flared up now that I am trying to resolve. But I believe that anything that makes even the smallest improvement is worth pursuing to get some relief. You are doing an amazing job to help her

 

[Dmitri]

You and your poor mother must be exhausted....sorry!

Does you mother have a Dr. of her own? It could be a GP, Internist or Neurologist, especially the latter....explain the situation. An excellent idea about the patch as that may be the easiest answer for all concerned. I didn't realize that it even came that way.

Best of luck to both of you. Yours, Lenora.

Since becoming bedridden, no doctor of her own due to not being able to travel. Trying to get outpatient video appointments now since the pandemic opened that opportunity more widely. It really is much harder to go through all this without having a doctor write basic directions, like asking for a warm room. Harder still will be to find a doctor who will understand and be willing and able to deal with this and hospital matters.

1) You said that when she gets the IV Ativan, then she gets quick relief for a brief window in which she is able to tolerate contact with food & water.

So... I was wondering, when she was in the hospital and got the IV Ativan, was she ever able to try other mast cell meds within that brief window after getting the Ativan? I realize this requires having a supportive doctor on board (which is probably the biggest obstacle) but if she got the IV Ativan as a "pre-med" (the way that I had IV Benadryl when I was in the hospital for a week in 2015), then she might be able to "test" other meds (or foods) within that window.

I was wondering if she was able to test something like Ketotifen (mast cell stabilizer), or any other mast cell meds, while she was less reactive from the Ativan? If so, this might be something to ask the doctor.

There were opportunities to test benadryl, pepcid and hyosciamine(gut antispasmodic, didn't help). All IV, of course. While the reactions weren't severe, they still caused a noticeable worsening with spasms and dryness, probably from the anticholinergic effects they have in common. The nasal cromolyn which caused a bad reaction was also done while under ativan. While ativan can help release from a flare during which even water and any food burns through the mucosa, it still definitely doesn't protect against reacting to something stronger like oral meds. Tolerated food variety definitely increases, and she's able to consume much more than the potato-avocado-egg diet she's restricted to at home.

When I did IVIG, I took 50 mg doses of benadryl through IV as a premed. I did have some side effects, but they were nothing compared to what trying lower doses of oral benadryl did to my mouth and GI tract, and resultant systemic side effects. So I definitely experience the same problem. To many doctors, it seems inconceivable that someone can have an intolerance for something via the oral pathway and not the IV. They try to pin it on some kind of anxiety about taking pills, even though this problem isn't that strange considering the GI tract is so dense in immune and nerve cells, and not to mention the way allergies can manifest exclusively on the epithelium.

When we asked about ativan injection, they refused and said something like "it wouldn't be good for a patient to have regular injections". Sounds like a bad copout, but either way it would beat waiting till everything hits rock bottom and traveling to the hospital to get an IV line inserted. Plus, with a longer-lasting alternative like valium as @YippeeKi YOW !! brought up, the injections wouldn't even need to be frequent.

My last question (for now ) was how does your mom do with steroids? I am NOT endorsing them as a long-term solution, but has she ever gotten relief from the intense inflammatory/allergic reactions from Prednisone or Dexamethasone? I was just curious if steroids have brought her any temporary relief like the Ativan does?

She was administered steroids a very long time ago for different issues, but eventually couldn't tolerate them either. My personal experience with prednisone when I was much younger was that it brought miracle-level relief, similar to my mom on ativan, but I couldn't tolerate it after the second dose.

And no epipen at hand either right now, unfortunately. A consultation at the very least with an immunologist is way overdue.

 

[YippeeKi YOW !!]

To many doctors, it seems inconceivable that someone can have an intolerance for something via the oral pathway and not the IV. They try to pin it on some kind of anxiety about taking pills,

You gotta admire their dexterity in avoiding anything like a direct dx, or even a hypothesis of a dx, or a differential dx.

It seems clear, at least to me (and keeping in mind my relative medical ignorance) that something's going on with your mothers mucosa, and apparently yours as well .... the mouth is lined with mucosal epithelium, which form a barrier separating the underlying tissues from stressors in the environment, like spicy foods, or strong astringents, or just plain old food, drink and medication. It that barrier has broken down, than anything that enters the mouth, including, clearly, water, can cause distress.

This isnt a hard conclusion to arrive at. What kind of testing have they done?

This must be hell to deal with @Dmitri. But then, idiocy always is .... chin up ....

 

[heapsreal]

There is a video visit scheduled for a post-discharge appointment with a rheumatologist, probably not the same one. I couldn't get their name. Video visits are the only type of visit possible due to the bedridden status. She was offered to go by ambulette, but that requires sitting, which wouldn't be possible due to severe OI.



Definitely safer than oral, but if it's gotten to the point where even skin contact with water triggers hives, it will most likely still trigger a reaction. Might have been an option before it got less severe. And if getting IV benzos is so difficult, I can imagine the transdermal option being even harder to get ordered.



She dried dissolving other medications before she even got this bad and it didn't work. Even vitamin supplements caused reactions. With the very small amounts of water she does consume, it would be even worse since the medication would be more concentrated.

I have to correct myself, the cromolyn she received at the hospital was nebulized and really damaged her nasal and oral lining. Unfortunately, it does look like the list of options is only narrowing. It would be interesting if it turns out that these are primarily MCAD symptoms that are controlled by benzos where antihistamines fail. Like in you case, it does appear that the classes of medications for controlling MCAD are a hit or miss.

I dont know why i didnt think about it before but just get a shot intramuscular. Its a form of administration many can do themselves or a relative. Possibly subcutaneous which is just a shorter needle that doesnt reach the muscle, its slower to be absorbed then in the muscle but will also last longer.

 

[sometexan84]

Then high dose IVIG re-set my immune system

So what dosage exactly is "high-dose"?

Do you have any documents or info I can give to my doctor which supports the use of high does IVIG for autoimmunity, and/or autonomic neuropathy, and/or chronic enterovirus infection?

 

[YippeeKi YOW !!]

Hi @Dmitri ....

Haven't run into you anywhere lately, and have been wondering how your mom is doing, and how you're holding up, when I was serendipitously tagged back to this thread ....

Did the rhuematologist have any useful input? Have you tried @heapsreal 's suggestion of intramuscular shots, tho I'm not sure that would by-pass your mom's sensitivities, given her reactivity to pretty much every form of administration, and the Drs resistance to any form of treatment that might actually help.

God, that must be hell....

I'm wondering about the Ativan. It's a particularly short-lived, tolerance withdrawal and addiction-prone medication. Would they be more open to Valium or diazepam, which are essentially the same form of benzo as Ativan, but with an infinitely longer half-life, therefore greater levels and time frames of relief for your mother, and maybe less bitching from the Drs .... I know that I mentioned this before, but just wanted to follow up, because I know how things can fall thru the cracks under stress ....

It seems that since both you and your mother suffer from many of the same oral and nasal mucosal reactions, tho yours are less severe, there could be a genetic component involved, that somehow the Ativan benzo modifies, ameliorates, or stifles in some way.

I hope things are better for you both right now, and that the general direction looks to be up-ish .....

 

[Dmitri]

Hi @Dmitri ....

Haven't run into you anywhere lately, and have been wondering how your mom is doing, and how you're holding up, when I was serendipitously tagged back to this thread ....

Did the rhuematologist have any useful input? Have you tried @heapsreal 's suggestion of intramuscular shots, tho I'm not sure that would by-pass your mom's sensitivities, given her reactivity to pretty much every form of administration, and the Drs resistance to any form of treatment that might actually help.

God, that must be hell....

I'm wondering about the Ativan. It's a particularly short-lived, tolerance withdrawal and addiction-prone medication. Would they be more open to Valium or diazepam, which are essentially the same form of benzo as Ativan, but with an infinitely longer half-life, therefore greater levels and time frames of relief for your mother, and maybe less bitching from the Drs .... I know that I mentioned this before, but just wanted to follow up, because I know how things can fall thru the cracks under stress ....

It seems that since both you and your mother suffer from many of the same oral and nasal mucosal reactions, tho yours are less severe, there could be a genetic component involved, that somehow the Ativan benzo modifies, ameliorates, or stifles in some way.

I hope things are better for you both right now, and that the general direction looks to be up-ish .....

Thanks for checking in. Unfortunately, she's been getting worse and worse. Barely tolerates food and water, has to use diapers in a laying position because she can't even sit up temporarily to use the commode now. Skin became a strange, dry texture, more weight loss. Hasn't been in the hospital since summer and no ativan since then. She has only had a few visits from an NP and some video calls with specialists, but no progress. Going to the hospital earlier last year during emergency situations did more and more damage each time. From the trip, to the very cold environment which is just unbearable for someone with her sensitivities, to the terrible doctors.

The ER doctors were usually decent and not a problem, and she got the necessary hydration and ativan infusion. As soon as she gets admitted, it's down to luck and at NYP, where she got admitted the last few times, most of the internists have been nasty. In the rare instance of getting a reliable internist, it usually doesn't matter because in a few days another one will take over and she stops receiving ativan which leads to her being discharged, likely with a malicious note in her medical records that will make future admissions even worse.

There was a video appointment with a rheumatologist without much help. Like at the hospital, the specialists wouldn't even consider ativan, deferring to psychiatry. Most doctors refuse to accept that someone can have an oral intolerance to medications, just like they refuse to accept the fact that ativan is more than 'just a psychiatric drug'. During the temporary hospital stay between medical kidnappings, the psychiatrist there refused to prescribe IV or IM ativan for nonsensical reasons and kept insisting that the tablets are the only option. The medical team there obviously believed she just had some phobia of taking oral medications.

I am trying to schedule another neurologist video appointment for her, but it most likely won't lead anywhere without the option of ativan or a more suitable benzo even being considered. With so much pressure, I haven't even started trying to get a lawsuit against NYP for the vicious and dangerous way they treated her. It's partly the reason she's at rock bottom now.

 

[YippeeKi YOW !!]

Oh, @Dmitri , that's so depressing and disheartening. I'm deeply sorry for waht you and you mother are being put thru/

You might consider my suggestion re Valium or diazepam (generic Valium cheaper). The Drs may be reacting to the knowledge, not exactly news and hardly an impediment to the masses of scripts being written previously, of Ativan's extremely, dangerously addictive profile, and might be less resistant to Valium. It's the same class of benzo as Ativan, but as I said, with a hugely longer half-life ....

There's nothing that Ativan could do that Valium wont do as well, but at a higher dosage. If I'm remembering right, 1 mg of Ativan is the equivalent of either 5 or 10 mgs of Valium, and Ativan's onset is faster, as is its departure .... but Valium will keep your mother stable much longer, and will require fewer refills ....

 

[mitoMAN]

Just wanted to jump in and say that I notice very good benefits from Lorazepam 0.5mg already. (Just been taking it for a two weeks every other day so far)
Our CFS Discord is going to have Imidazenil synthesized. According to studies it is supposed to not build up tolerance or even help reverse previous benzo tolerance.

 

[Dmitri]

Oh, @Dmitri , that's so depressing and disheartening. I'm deeply sorry for waht you and you mother are being put thru/

You might consider my suggestion re Valium or diazepam (generic Valium cheaper). The Drs may be reacting to the knowledge, not exactly news and hardly an impediment to the masses of scripts being written previously, of Ativan's extremely, dangerously addictive profile, and might be less resistant to Valium. It's the same class of benzo as Ativan, but as I said, with a hugely longer half-life ....

There's nothing that Ativan could do that Valium wont do as well, but at a higher dosage. If I'm remembering right, 1 mg of Ativan is the equivalent of either 5 or 10 mgs of Valium, and Ativan's onset is faster, as is its departure .... but Valium will keep your mother stable much longer, and will require fewer refills ....

Valium as a safer and more efficient alternative is the first priority, but I haven't even had a chance to ask about it because both benzos and IV delivery at home were written out of the question on any of the video calls after the last time she was at the hospital. If she does end up at the hospital again, I suspect they will claim they don't even have IV valium. With all the medical ignorance regarding medications and their indications, it might take a type of specialist that doesn't exist to reach that point.

Just wanted to jump in and say that I notice very good benefits from Lorazepam 0.5mg already. (Just been taking it for a two weeks every other day so far)
Our CFS Discord is going to have Imidazenil synthesized. According to studies it is supposed to not build up tolerance or even help reverse previous benzo tolerance.

I looked up imidazenil and it certainly sounds interesting. Any links to the CFS discord? Are members going to be doing some kind of experiment/trial with it?

 

[YippeeKi YOW !!]

I suspect they will claim they don't even have IV valium.

That would be absolutely face-palming-ly ridiculous, sort of like saying they don't have any IV Dilaudid or Extra Strength Tylenol. Or alcohol swabs.

With all the medical ignorance regarding medications and their indications, it might take a type of specialist that doesn't exist to reach that point.

This baffles me, since Drs regularly prescribe heavy, dangerous drugs for off-label uses without so much as turning a hair.

Apparently, pharma rewards programs for Ativan and Valium have dried up or been re-routed to other drugs. It's the only explanation that makes any sense ....