Mast Cell Mess Causing Tachy/low Bp

[Godsgal]

Hello to all....It's been a while since I have been on. Unfortunately being on the computer triggers me and makes me feel worse than I already do so I try to limit it.

To start I can confidently say that attempting to get my mast cell disease in order has helped me sooooo much and for that I'm thankful.

The meds I take: Singulair 10mg am & pm, Zyrtec 5mg in am/5mg in afternoon/10 mg at night, Zantac 150 mg BID, Midodrine 2.5 mg 3 times daily.

My trouble now is the ridiculous low blood pressure & high heart rate. I'm just stuck. I need help! My blood pressure ranges from 79/50 to 98/60 throughout the day along with over 100 if standing. My EKG during a recent attack just showed a faulty right conduction...I guess what happens before you get the bundle block. I have no idea if I'm even saying that right but no one including the ER or my cardiologist was too concerned about it. But my cardiologist did say he wanted my heart rate under 100 or my heart would just get weaker and weaker. I'm more concerned about the tachy than the bp at this point b/c I have learned to live with the bp....but the high heart rate is wearing my heart out and I don't like that.

I'm tired, spent, worn out, and need help. I have thought about ativan b/c I know it can help some with mast cell disorders but reading about it online doesn't comfort me much as far as potentially lowering my blood pressure more. The midodrine doesn't seem to work very much even when I'm on 7.5 mg and then the side effects from it are miserable. I wanted to try doxepin for the mast cells since my allergist said it was 80 times stronger than benadryl. But I have to get off the midodrine first.

Any help would be appreciated. I'm struggling right now.

[brethor9]

Hey Godsgal!

Sorry you are having such a hard time right now! I can sympathize as I have been having nonstop adrenaline surges and like you worry that my heartrate gets so high its just gonna tire out! I currently do take 0.5mg-1mg daily of ativan and for me it is a blessing for taking the edge of my system and I dont really find that it lowers my blood pressure...which I also suffer from. So I wouldnt be too concerned just start out on a really low dose and work up until you get some relief. Its definately fast acting...relief within 30 mins if you take the sublingual type. Hugs! and I really hope you find some relief soon!!

Bren

[lieze]

My suggestion as an idea maybe easier said than done is that we work at slowing our metabolisms down a bit.

For those of us who can tolerate being up a bit maybe we can try to work on staying in a very relaxed state.

I sit and stare at the wall until I am in a half zombie like state. I am trying when I do get up and move around to do it in a slow methodically paced flow where I achieve the least amount of elevations as possible.

In doing this maybe it is possible for us to stregthen our hearts or at least maintain strength rather than tire it out.

I spend many hours with my feet up resting and feel that it has been necessary for my body to regroup a bit.

I haven't had a surge in months.

Thank God for that.

I have noticed my heart rates a bit higher also and I'm not sure why like resting in the 90's and for a while there I had slowed down a bit to 70-80's.

I am interested to wear my heart rate monitor and see what types of readings I get with my slow motion body.

I just came in after about 20-30 minutes outside spraying off car mats with the hose and hanging them on a clothes line to dry. BP 110/64 heartrate 100 as soon as I sat down.

I feel like that's excellent for me and good good exercise.

I almost feel as if I should try to do similar paced activities like that everyday to see if I can increase my ability or at least maintain it.

[Sarah4444]

Hey there, sorry it took me so long to notice your post. I have also been taking a little internet holiday. I found that midodrine didn't help me enough until I got to 10 mg three times a day - the only side effects I notice are creepy scalp and that sort of thing (although I did notice one person mentioned that frequent urination can also be a side effect, but I had that even before starting it so who knows).

Doxepin 20 mg at night has been a huge help to me, and I take it along with midodrine - haven't noticed any major problems with the combination. Who told you not to take them together?

Finally, I think that Nalcrom/Gastrocrom is also helping but it seems to work slowly over time. I still have lots of OI but am doing much better than last summer - my next drug trials will be ketotifen, then low dose benzos (which Dr. Afrin has found work as mast cell stabilizers) then Mestinon.

I hope this helps a bit, please let me know what happens. I have learned most about mast cell meds from other patients, especially the subgroup of us lucky enough to also have POTS. Take care.

[Godsgal]

Sarah.....my pharmacist and docs told me about the interaction. And it is a very strong serious interaction. I would look that up if I were you. I really want to start taking doxepin but I just can't seem to get off the midodrine. My bp just wont stay high enough for me to try it.

[Sarah4444]

Well, this is what drugs.com had to say about doxepin and midodrine:

MONITOR: Midodrine, an alpha-1 adrenergic agent may lead to bradycardia if administered concomitantly with any agent that directly or indirectly reduces heart rate. This may be most important for beta blockers and tricyclic antidepressants.

MANAGEMENT: Patients should be advised to discontinue midodrine if they experience signs or symptoms of decreased heart rate (i.e., slow pulse, dizziness, syncope, cardiac awareness) and to contact their provider for reevaluation

I have been taking them together for almost a year and have no signs of bradycardia (in fact my heart rate still runs pretty high overall) but it's good to know this. I'll talk to my pharmacist about it, but at this point I am not too worried - the "normal" dose of doxepin is about 10 times higher than what we take for mast cell stuff so maybe on such a low dose it's not as much of a concerm? Thanks for the info, anyway.