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Cfs, Mast Cell, And Amitryptiline


Katybug
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3498825/

I had an interesting appointment today (not with an immunologist.) This doc gave me a mast cell protocol information sheet that included amitryptiline. I happen to be on amitryptiline for migraine prevention (which isn't working) but I thought I would cross reference it with mast cell to see how it works in treating mcas. I came across this paper which I thought both CFS and MCAS patients might find useful. I was thinking of talking to my neuro about stopping the amitryptiline as it isn't helping the headaches but now I think I need to stay on it. This is the first time I've seen this drug in a mast cell protocol. Has anyone else seen it used for this?

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I just had a cardiologist start me on Zoloft, as he mentioned something about it resetting my brain in relation to POTS. I specifically asked if it would make me hot, and he said no(I was thinking about it increasing serotonin, and I was thinking high serotonin causes heat(serotonin syndrome)). I started it at a baby dose, and sure enough, a few days in I began being hot. When that happens, I just vasodilate. So, I know it is not a tricyclic, but I never do well on any antidepressants.

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I too am on amitryptiline for migraine prevention. It also is not helping, but I think that I have not even come close to a dose that could help. Am at 5 mg now, and going to 10 soon.

It did not help my sleep, as most said it would, but oddly, I am sure I feel better on it. More energy and able to do more. I don't feel more mental clarity though, and feel a little more sluggish brain wise even at the micro dose.

I don't have MCAS but do have CFS and POTS.

Will keep you posted.

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LMG,

The recommended dose on the mcas protocol I received is 25 mg. The dose my neuro said would be therapeutic for migraine prevention is 70+ mg. I am on 30 mg right now tried titrating up to 40 and then 50 and had issues with side effects, so neuro said to drop back down to 30. It's been a week and I'm still having the same issues, so now I don't know if it was the amitryptiline or just a POTS flare.

Sue,

Sorry you didn't have any luck. I couldn't handle SSRI or snri at all. They made my POTS flare with every dose.

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Katie,

I read every review re the amitryptlline and it seems that 25 is the sweet spot for many. I don't think more is better with us and meds. It also can be quite help for interstitial cystitis, which coexists in CFS a lot as well. I think I will play around with it for a while.
Have you tried Topomax? Just picked up a prescription for that and that is my neurologists med of choice for migraine prevention. She says 25, 50 and then 75 mg of that over a three week period.

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Hi LMG,

Yes, I read some articles last night about its role in IC too. Very interesting that that is also linked to mast cell.

I have tried topomax. That didn't go well. I had bad breathing issues with it. The higher the dose, the worse it got. It was to the point that if I tried to say more than one short sentence, I would start choking. It felt like an elephant sitting on my chest. My neuro didn't believe it was the topomax and thought it was just POTS breathing issues but as we reduced the dose, I got better. I can't really remember if it helped the migraines for the weeks I was on it.

Just so you understand, we are just now finding out that I have a hypercoagulability syndrome, so they think my migraines (daily now) are being caused by microclots from this issue, so none of the standard preventative migraine tx work for me. The hope is to get me on a blood thinner but there's some other funky blood work we have to figure out before I can do that. As aspirin is part of this mcas protocol that was given to me yesterday, I'm going to ask the hematologist if we can use the aspirin and not an alternate blood thinner as that would be 1 medication as opposed to 2. Plus I don't think I can take the aspirin for mcas if I'm on some other blood thinner.

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Hi Katie,

Thank you for posting the very interesting articles. I had heard of Doxepin being used as a mast cell treatment but not Elevil. I was prescribed Elevil a number of years ago for fibro. I was only on 10 mg HS but it really helped a lot with sleep and pain. Interestingly though after 2 years of being on it because of its interference with sweating I was told to discontinue it as it would make my pots symptoms worse. That was before I ended up with a mast cell activation disorder diagnosis added on. I wonder how it's viewed for one with neuropathic pots and mcad. I will have to ask my doc. I'm curious.

I'm so sorry to hear about your hypercoagulability issue as well as your daily migraines. How terrible your pain must be. I hope the rest of your lab abnormalities are figured out soon and the aspirin therapy works out. That would be so much nicer to be able to take aspirin instead of another type of blood thinner especially since as you pointed out aspirin is one of the potential mast cell medications. For myself I have found that aspirin helps with my flushing. Let us know how you do with it. I'm sure your doc has you starting out on incremental doses just in case of a reaction. Interesting the way some mast cell people do well with it and some are allergic to it. I pray things improve for you soon Katie.

Janet

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Hi Janet,

Thanks for the well wishes. One of the other drugs in the protocol is valium. I tried a bit earlier today but couldn't find any great articles explaining the mechanism in mcas. I'll start a thread on it if I find any good research. Any chance you've heard of using valium in mcas?

Katie

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Katie I haven't read any articles specifically mentioning valium per se but benzodiazepines in general seem to be commonly prescribed for mcas/mcad because of the calming effect they afford. Feelings of stress ( I strongly dislike using the word anxiety ) in addition to cold, heat, specific foods etc. etc. is considered to be a mast cell degranulation trigger. I have heard some go so far as to call benzos mast cell stabilizers which I don't believe they officially are. I have wondered at times if something like that would help me but my one and only experience with a benzo which was given as a twilight med did not go well. I think quite frankly the doc overdosed me on the stuff so it may not have been a complete medication intolerance issue. When I feel stressed ( I seem to have developed a low sensory overload threshold ) which is often I can usually hide it pretty well except for the tell tale flushing ( face, neck and splashed across my chest ) which is reflective of mast cell degranulation. Of course any of the other lovely mcas symptoms can result as well so that's where taking a calming medication is supposed to help. I have noticed since starting on mast cell meds that my degranulation threshold is somewhat higher.

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Hi Janet,

I haven't ever taken valium or any benzo, so I don't have any feedback first hand. I did find some articles and a few textbook excerpts explaining the mechanism. Apparently, there is some truth to the mast cell stabilizer function in this drug class although some proved more effective than others. Unfortunately, I can't link any of it because the articles were in pdf format and the textbook excerpts were from Google books and I haven't had success linking them either. I'll have to work on how to post this information. It's quite interesting that these drugs are coming up after all this time researching and not finding anything new.

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Yes. It is interesting. Thanks for your efforts in trying to provide the links.

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Katy, for different reasons, I have been interested in this drug for a time. I did not know that it acted as a mc stabilizer. I had read of actions on H1, H3, and H4 receptors.

I experimented with benzos for chest pain. I was not successful with this approach etc., and I did begin reacting to the medication. There was two occasions where I made a long distance trip out, and used small doses of valium. Both trips out, I did a lot better than my normal. I was not as reactive, less brain fog, and just a general over all improvement. I did not see any improvement from Ativan, but I did with valium.

I have always felt that by calming everything down, I would calm the MCs down.

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Gjensen,

It's good to know that the valium helped you to an extent. I'm sorry you're having such a hard time finding things you don't reacte to. I started a new topic with what I found on benzos and mast cell that seems like reliable information.

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