How Is Clonazepam Beneficial?

[Kat]

I see that there are several people that are taking Clonazepam. What symptoms does it help or what is the benefit for people taking it?

Thanks

Kat

[Dizzysillyak]

Hi,

I was prescribed clonazepam / klonopin for nocturnal myoclonus and a seizure disorder. I just started experimenting with it during

the day if I'm feeling jittery. The last time I used it during the day was because I hadn't slept well so

I was having pre seizure jitters. I'm new at recognizing this feeling.

I only need 1/4 of a .125 mg tablet to calm me or help me sleep now. When I was eating and drinking excitotoxins like gluten, hfcs and caffeine I needed .5 - 1.5 mg. And that didn't always work.

Hth .. D

[Batik]

Please be careful taking clonazepam or any other benzodiazepine for more than occasional use. There's a high rate of addiction, tolerance and dependency. If you have been on these meds for a while and have decided to come off them, then please make sure you get proper medical guidance and an appropriately slow taper. If you are finding that you need to raise the dose to get the same effect as you did before, then seek medical advice.

I use temazepam and diazepam occasionally, but I always monitor how much I take (in writing) and am careful not to take them for too long.

[CharmedLinz]

There are many Dysauto Docs that routinely prescribe this med to try to "tame" the hyper adrenaline some of us get.

My Doctor is one of those, and I must say it has helped over the past 2 years or so.

I'm careful to not take too much, though it really has no effect on me.

It really just levels things out a bit. I take a 0.5mg 2xday, another on some really bad days.

[diamondcut]

I would say the same, i am still on it, been a few weeks now 0.5mg just seems to calm the system and help my migraines and surges slightly too, not a miracle drug by any means but more positive than negative.

[DoozlyGirl]

I've never taken benzodiazepines, but I've been reading how it can be helpful in taming mast cells. I know of mast cell patients who can't tolerate any H1s and will take a benzodiazepine and H2 to thwart off degranulation, in place of a H1/H2 combo. Dr Afrin mentioned he has several patients where benzodiazepines have been very helpful.

[diamondcut]

Yes i have heard the same, i would say my racing heart rate in the mornings are much better and i have less wheezing so i tend to agree with Afrin's theory, although of have started nasal crom at around the same time too, but i feel that both are helping.

[brethor9]

Doozly....Dr Afrin told me the same about benzos and mast cell. I think that's why they are the only meds that seem to help me.....I always thought it was strange that they helped with so many of my symptoms that technically they shouldnt help....until I found out about the mast cell issues. They definately make a difference for me and I am not stopping anytime soon

[DoozlyGirl]

Bren,

I am so glad benzos are helping you. Just another clinical story pointing to complexity of all this. Nice to know there is another class of meds out there to possibly try.

Before I learned of mast cells, I felt defeated because it seemed I couldn't tolerate ANY meds, when in fact I can't tolerate meds where the active ingredient is a known degranulater (such as beta blockers, opoids, anesthesia), contain sulfa or crossreact with sulfa (antibiotics, certain migraine meds, lasix, HCTZ) or contain FD&C dyes, especially yellow (specific doses of meds, like Synthroid, Levoxyl, where I can tolerate the white ones). Maybe the benzos will stabilize your mast cells enough for you to figure out if you are reacting to to something in your meds.

It is interesting how many of us need to slowly taper up our meds or take really tiny doses. Could be related to how we process meds in the liver.

Best wishes,

Lyn

[DoozlyGirl]

Just found this in a internet search. It is from an email between and mast cell patient and Dr Afrin regarding benzodiazepines:

Since it's just been discovered that mast cells also express benzodiazepine receptors, and since both Dr. Molderings and I have now had some patients (though certainly far from all) respond very well to benzodiazepines, you should definitely get around at some point to trying something in the benzodiazepine class, likely either lorazepam or flunitrazepam. Lorazepam will probably be the more easily accessed drug, and I have taken to starting it in my patients at 0.25 mg twice daily, escalated (as tolerated) every 4-7 days in 0.25 mg increments until maximal tolerance or maximal response is reached. Some of my lorazepam-responsive patients have noted that the effect wears off before they're due for their next dose, and in such situations it's perfectly OK to escalate from twice-daily to thrice-daily dosing. An occasional lorazepam-responsive patient has noted best improvement with varying doses, e.g., 0.25 mg on waking, 0.5 mg mid-afternoon, and 0.25 mg mid-evening.

[Angela]

I have hyper form of pots and take up to 2 mg on a bad day when I am having lots of surges and panicky feelings. I automatically take 1 mg every a.m. when I am most symptomatic to help me maintain and able to get ready for work, and then .5 as needed depending. It helps me a lot. I am on no other meds other than odds and ends of vitamins and zyrtec/claratin. Don't know if I have mass cell disorder but I heard several speculations that mass cell disorders and pots are one and the same so the mass cell theory and benzo's make sense to me.

[harlo13]

Just stumbled across this site and had to add my story.

11 years with mystery diagnosis problem, many doctors, very little progress. finally did a low histamine trial diet (among many many others) and had tremendous immediate improvement. researched ways histamine intolerance could manifest, found mastocytosis. screening for cutaneous masto positive, marrow and gi negative. H1, H2 blockers, cromolyn soduium all minimally helpful. gleevac 200mg stopped precipitous slide toward death but success was partial, still had frequent bouts of breathing difficulty unassisted by asthma interventions. severe sinus inflammation virtually constant. tried diazepam, only made me extremely sleepy. tried clonazepam, and it was like a switch for my breathing and sinus problems was turned off. i certainly dont feel perfect but i feel a **** of a lot better than i did two days ago. hoping it continues bc this would be a massive breakthrough for me. wish me luck

[Debbie Rose]

I take clonazepam for my "anxiety" and chest pain that goes with it, along with fast heart rate and some shortness of breath- I take half of 0.25mg and it works fine. This usually comes on when I am just sitting, watching TV, not thinking of anything at all. It is weird but it works so-"there ya go"  I have never had anyone explain why it works but hey, I'm just glad I have one diagnosis (NCS)-took long enough just for that....so I have not explored MCAS or EDS yet

[Gracefulprincess]

I haven't been on the forum in awhile so I'm catching up on my reading. My neurologist put me on Clonzepam (.5mg twice a day) awhile ago. It's probably been a good 7 years or more. But I don't take it for my Pots, I'm on it for seizures and the tremors/ shakiness I get.  And it does help the tremors from turning into a full blown seizure.

[bigtrouble]

I took it in sept 2015 and I took it for 1 month.

I do not have anxiety but I have anxiety like symptoms and my symptoms would change sometimes.

The biggest problem was chest tightness and chest pain. A kind of heart-attack like feeling. It is difficult to describe but it felt like ****.

Also, every morning I would wake up and in 30 min, my left side, just below the breast bone, there would be some pain.

Other symptoms were random lightheadedness, dizziness, nausea (every morning), the occasional PVC (4 PVC/min), muscle twitching. Then there was a period of neck tightness.

I really wanted to quit my job and forget everything since I could not handle the discomfort. Did I mention the pounding heart I had at times.

 

CLONZAPAM: this was a wonder drug. It helped quite a bit to my surprise. Then they put me on Venlafaxen. I took it for 1 year. Now I am MUCH MUCH better. Except the PVCs happen all the time now, day or night. I get 10 to 12 PVC/min. At least now I can go for walks, I can run, go to the bathroom....without my heart pounding.

[Ashc]

What's your diagnosis?

[Lamby]

Several years too late to this conversation but am finding it really interesting and helpful. I have EDS/POTS and a recent diagnosis for ADHD. I had been taking ad hoc Clonazepam (once or twice a week) for restless leg so that I could sleep. When I started taking a central nervous system stimulant for my ADHD, I stopped taking the Clonazepam... for about six weeks my POTS symptoms completely disappeared! 100%! Then they came back. I had always had an uneven histamine intolerance, but it was cumulative rather than an outright allergy to specific things, and symptoms were so inconsistent that I could treat them with antihistamines as needed.... unfortunately, I have now discovered that because histamine is a neurotransmitter, CNS stimulants increase histamine production in the body. So any positive effects I get from the stimulant are erased by the antihistamine! 🙄 a histamine overload plus an inability to break it down is now messing with my menstrual cycle. 
 

I have been taking Quercetin and DAO supplements to stabilise the mast cells and degrade excess histamine.  I’m interested in Clonazepam, but worried about the long half life. I tried it last night (1mg) and slept wonderfully, but woke up a bit dizzy and I’m just waiting for the stimulant to work but I suspect that the dose may be less effective than usual. 
 

Has anyone seen similar effects with shorter acting benzos? Or using something like Melatonin? 

[Pistol]

Hello @Lamby -i too have POTS and ADHD as well as histamine intolerance that triggers my POTS symptoms. I personally have found low-dose Ritalin in the morning very helpful and have not noticed an increase in allergic reactions from the super low dose. When I DO get seasonal allergies or insect bites ( which both trigger POTS for me ) I take Loratadine in the morning and low dose Ativan ( 0.5 mg ) at night ( rarely ). 

1 hour ago, Lamby said:

 I’m interested in Clonazepam, but worried about the long half life. I tried it last night (1mg) and slept wonderfully, but woke up a bit dizzy and I’m just waiting for the stimulant to work but I suspect that the dose may be less effective than usual. 
 

Has anyone seen similar effects with shorter acting benzos? Or using something like Melatonin

Melatonin has not done anything for me in the past. The Lorazepam does help a lot to calm me down when my adrenaline levels are through the roof and I do not have any adverse effects from it ( other than feeling tired the next day after taking it ). I also suffer from muscle spasms a lot from the excess adrenaline so a half tablet of Flexeril ( a muscle relaxer ) helps me go to sleep when I am very tense ( but I do not take them together ) and I do not medicate every night.