Abilify for the wired kind?

[judyinthesky]

Are you also trying H1 and H2 antihistamines, quercetin, montelukast, cromolyn? I know maybe you are super sensitive to meds, but worth trying maybe they could help with MCAS and this could be a clue as to why you are hypersensitive. It might not be psych but MCAS neuroimmune symptoms causing over excitatory neurotransmission

Yes tried or am on them all. My mast cell expert gastro said she can't help me anymore in this state either.
I take mast cell stabilisers but not sure they are helping. Ketotifen h1 h2 quercetin and Klonopin
Rest couldn't deal with

 

[leokitten]

Yes tried or am on them all. My mast cell expert gastro said she can't help me anymore in this state either.
I take mast cell stabilisers but not sure they are helping. Ketotifen h1 h2 quercetin and Klonopin
Rest couldn't deal with

Have they tried to see if your insurance would approve omalizumab? Or on your own a low histamine diet?

Another good site to find possible treatments is the Stuff That Works site. You have to contribute an experience to join and see the site, but worth it they have a lot of chronic illness info and things to try, eg https://www.stuffthatworks.health/mcas

 

[judyinthesky]

Have they tried to see if your insurance would approve omalizumab? Or on your own a low histamine diet?

Another good site to find possible treatments is the Stuff That Works site. You have to contribute an experience to join and see the site, but worth it they have a lot of chronic illness info and things to try, eg https://www.stuffthatworks.health/mcas

I'm on a low histamine diet. Insurance isn't a problem in my extreme life and death situation

I also read Afrin's book and check Mastattack and their Facebook group.
At some point though one probably has to admit that the problem isn't classical mast cells only.

My immunoglobulin is tested and it's normal, only the gut has the typical lower barrier that is typical for severe pancreas insufficiency. But that's already treated as much as I can.

 

[judyinthesky]

Have they tried to see if your insurance would approve omalizumab? Or on your own a low histamine diet?

Another good site to find possible treatments is the Stuff That Works site. You have to contribute an experience to join and see the site, but worth it they have a lot of chronic illness info and things to try, eg https://www.stuffthatworks.health/mcas

I checked again and only one time had too high IGg2

 

[leokitten]

I have lamotrigine here but am a little worried about the dreaded rash because I have already intense skin burning and formication and would avoid going into the hospital.

As you know we cannot push people to do anything in our advice, but as you said you are in a terrible state and willing to try anything, from what I read lamotrigine rash is a rare side effect and starting at a low dose like 12.5 or 25 mg po qd which is way lower than bipolar etc take would probably minimize chance of rash. Then slowly increasing as needed to explore therapeutic effect. If you are desperate then there is always some risk not much else I can tell you

 

[judyinthesky]

As you know we cannot push people to do anything in our advice, but as you said you are in a terrible state and willing to try anything, from what I read lamotrigine rash is a rare side effect and starting at a low dose like 12.5 or 25 mg po qd which is way lower than bipolar etc take would probably minimize chance of rash. Then slowly increasing as needed to explore therapeutic effect. If you are desperate then there is always some risk not much else I can tell you

Yes of course this is all logical
I'm THE side effects person though
Thank you though

How much I'm willing to try usually depends on my general state. Crash every third day.. so we'll work ourselves through. Two medication trials have brought me to very severe though so yeah, you get the impression

 

[Zahr82]

Thank you.
Gaba and pregabalin make everything worse.
I take Clonazepam which is the only thing that makes my symptoms better and enables me to eat without neurological terror.

I haven't tried topiramate

I have lamotrigine here but am a little worried about the dreaded rash because I have already intense skin burning and formication and would avoid going into the hospital.
I know quite rarely it is used for ME very off label.

Don't ne worried about lamotrigine, just start at 12.5, slowly titrate. If you start to develop a rash stop immediately, call a doctor. The rash is actually very rare

 

[judyinthesky]

Don't ne worried about lamotrigine, just start at 12.5, slowly titrate. If you start to develop a rash stop immediately, call a doctor. The rash is actually very rare

Problem is I would be unable to go to the hospital so in an emergency nobody would be available and I already have formication and rashes.. so how would they treat this in case I develop?

 

[Zahr82]

Problem is I would be unable to go to the hospital so in an emergency nobody would be available and I already have formication and rashes.. so how would they treat this in case I develop?

The allergic reaction needs to be taken seriously, but is rare but its why you start at 25, and work you're way up slowly. If it starts happening on a low dose, stop then ring emergency services to be on the safe side