I Am Back To No Meds

[gjensen]

Diltiazem helped me a lot, in a lot of ways. Unfortunately on my ever growing list of reactions, I am unable to take it now. My reactions to it were getting too severe.

Now that I am not taking it, I realize how helpful that it was.

I do not have much of a choice, but to look into the MCAS stuff. I am reacting to all of the over the counter anti histamines, and now some foods. Funny how all of the things I had been tolerating, I can no longer tolerate.

My coronary spasms are getting worse, and more frequent. The nerve pain is getting worse.

Ironically, my orthostatic intolerance continues to trend better.

[Bigskyfam]

I'm no meds and flaring a bit but not tachy. More chest pain, nausea and lightheaded. Contemplating trying something but worried about going down the rabbit hole

[Katybug]

That stinks, gjensen. I'm sorry that you had to stop the med that was helping.

[SarahA33]

Gjenson, the coronary spasms have increased you think b/c you have stopped the diltiazem/Cardizem? I know you've mentioned the timeframe of these of episodes before, but they mostly occur at rest? Bummer that you had to stop the medicine, I'm sorry buddy. Are they thinking of trying anything else in place of it?

Encouraging to hear that your OI is continuing to improve. It helps when you can find something positive when you are feeling so poorly

[gjensen]

BigSky, I wish that I could. I would rather it be that way.

Thank you Katy. I don't like it, but I have no choice. At least it is not a difficult drug to come off of. That would not have been good. It isn't fun coming off of it completely that fast, but it is certainly tolerable.

Sarah, the coronary spasms have been progressing, even on the Diltiazem. I wasn't able to get to a high enough dose to really help the. I would react at the higher doses. I do have some Clonidine around here somewhere, and hopefully I can still take it. It did help keep it all leveled out.

You are right. They happen at night, or immediately upon waking up. I can have the problem at other times, but that is where the majority are had. Every night, every morning.

I leave for Vanderbilt tomorrow. My only concern is that I am being worked in on the Cardiology side, and I hear they do not have a Mast Cell doc. I have no hope of getting the spasms under control, if I cannot take any medication for it. If I can get a grip on these two things, I will be partially functional, LOL. Maybe it will at least get me in the door, and good me going in a better direction.

[SarahA33]

Vanderbilt here you come! I am really happy for you.. Take it one step at a time. Are they admitting you or is it outpatient?

I have had some tightness in my chest when I try to relax. . Laying down, watching TV, reading, ipad..it's better on the Cardizem. Probably my heart rate of 500.

Just thinking, you can tolorate clonidine, centrally acting drug? and beta blockers and calcium channel blockers give you reactions? have you tried alpha beta blockers like labetalol? What about suggesting something like Multaq or Ivabradine?

[gjensen]

Beta Blockers might put me under LOL. I reacted horribly to beta blockers. Three of them. Bronchio Spasms (sp?).

I have never heard of Multaq, but I have wondered about Ivabradine.

My reactions are allergic type reactions. As far as I know, for some at least, it isn't the drug itself.

I do think alpha blockade is what I need as much as anything for the spasms. I am skeptical that it is purely endothelial dysfunction. I am nervous about any beta blockade considering my prior reactions.

I might react to Clonidine now to. I didn't before, but that seams to mean little.

I am skeptical about the Vanderbilt visit. I haven't had good luck. I keep getting docs that ask me what do I want to try. It is nice to be listened to, but I am not a doing very good job. LOL.

All I know about Vanderbilt is it starts with a consult with a Cardiologist. I have had my fill with Cardiologists, but I am still hopeful. I only want help with two things. For now, the rest I will deal with.

[Katybug]

Just thinking out loud here, but could the coronary spasms actually be a mast cell reaction in and of itself? The plethora of inflammatory chemicals that mast cells release have far reaching effects and can affect cardiac tissue. Maybe getting a good mast cell doc on board could help unravel that issue as well ??

[Katybug]

I think (although I wouldn't swear to it) that Dr. Afrin has left the Carolinas (which if I remember correctly is your part of the world). But even if he left the area, I wonder if he left a protégé behind that knows enough about mcas to help you. You could always call Dr. Afrin's office and ask.

[gjensen]

Katy, I am starting to wonder the same. I do wonder if treating the one, will help the other. I intend to pursue it.

You are right. Dr. Afrin was in my backyard. I was not pursuing Mast Cell then unfortunately. Ironically, when I first became sick I was building a project not far from where his office was.

I do have an appointment with a Allergist/Immunologist at MUSC in April. I was not getting anywhere in hematology. I kept getting pointed to this doctor. Maybe if she cannot help me, she can point me to someone.

She is my back up plan now. I got the Vanderbilt appointment in a couple weeks. I figured a lot longer. That was my back up.

Right now, if I can get the two managed, I will be managed. Until something new. LOL. I do need to get it managed or I will have a bigger problem. I cannot take nitro every night and morning.

I appreciate your thoughts Katy. They are helpful.

ETA: What has convinced me of the MCA component . . . I took an aspirin the other evening. I used to be fine with them. It felt like the end of the world for over an hour. Everything went crazy. I almost went to the emergency room. It was bad, and I do not get worked over much these days.

[Raisin]

I am sorry you are struggling GJenson. I tried to look up Vanderbilt and MCAS. A doctor named Dr. Shibao Was mentioned as writing a research paper re MCAS and autonomic dysfunction and she is a member of the autonomic team there. Maybe this will help? Not sure. Maybe you can get an appt with her while you are there to see the cardiologist? If you Google it, maybe you will find something. Good luck!

[gjensen]

Thank you Raisin. I will look into her. I need to write this name down.

I am not struggling too bad. I am in good spirits. I was able to prune my grape vines today, on a nice day. That was nice. My Apple trees earlier in the week, though the up and down on the ladder set me back a day (or two LOL). I wish that I had another day to do my blueberries.

I hope all is well with you.

[Psalm 23]

Hi gjensen,

I'm so sorry to hear of your struggles. I used to have a lot of problems with sharp intermittent left sided chest pain which worsened enormously when I was placed on beta blockers. It turns out the pain may have been mast cell related because now that I am on MCAD treatment I no longer have any chest pain. MCAD is definitely worth pursuing as a possible diagnosis. Best of wishes to you at Vanderbilt.

Janet

[corina]

Hope VanderBilt will give you some answers gjensen!!!

[SarahA33]

I ran into the same problem until I got to Cleveland. Probably because I was the one bringing in the research to them and telling them what I had already tried. Your in the same boat. Think positive thoughts today.. You've been through a lot , use today to your advantage. who are you seeing?

Prazosin and Doxazosin are two alpha blockers I was tried on very early on.

You and your family will be in my thoughts!

[gjensen]

Psalms 23, your thoughts are always helpful and concise. It would be nice if dealing with one, would manage the other. That would be nice. If this was not so frequent of an occurrence, I would probably just have dealt with it. Unfortunately it is every night and morning. Guaranteed. It only varies by degree.

Recently, I went through a spell where I could not lay down at all during the day (for three weeks). The local doctor wanted to treat me for pericarditis. Maybe it was, but I wasn't convinced. I was not evaluated for it . . . .

Thank you Corina. You always share kind thoughts.

Sarah, I tied Trazodone recently. It is supposed to help with nerve pain. I tried it as a sleep aid. One of it's effects is actions on a1and a2 receptors. It did make my OI worse. I began to tolerate it better concerning the OI, but I could not give it enough time to see how helpful it was or not. I started reacting to it.

I wanted the sleep aid because my sleep schedule had completely reversed. Wanting to sleep in, in the morning to avoid the spells. Waking up early is the worst. Then the pain keeping me up at night.

Eventually, I just suffered it and stayed up all day, after being up all night. I did this for a few days, and was able to flip my schedule. It is normal now, but it is trying to trend back the wrong way. It was miserable, but I pulled it off. The nerve pain and chest pain was off of the charts for that few days.

I will head out soon. It is a long drive. I am hopeful. My wife needs a break. She has to put up with me.

[SarahA33]

Your wife loves you, I say the same thing about my fiancé. I tell him he deserves a medal of some sort. Truth is though, if the situation was reversed, we wouldn't hesitate to do the same things for them.

I have never tried trazodone actually. Does the clonidine help with sleep for you? I'm not sure about Benzodiazapine's with the reactions you've had recently, but temazepam is a long acting benzo appr'd for insomnia. Doctors typically won't Rx it though if you are taking a short acting like Xanax or Ativan, yet every case is different.

Drive safe!

[dkd]

Best wishes to you and let us know how it goes. Maybe some fresh eyes and new doctors will see something different.

Have a safe trip!

[xRobin]

No suggestions here, just so sorry you're going through this and I hope you find some answers at Vanderbilt. I hope you find one of those bright, motivated docs that gets interested in you and tries to figure it all out. I am super reactive to medication too and I understand how heartwrenching it is to find something that works only to have my body say "no!"

I think our partners, family, close friends, etc., are the unsung heroes of chronic illness. Props to your wife!

[Katybug]

Hope your trip is going ok. Hope the docs have brilliant ideas.

[gjensen]

Sarah, she must. She puts up with a lot, and never complains. I would certainly do the same for her.

Unfortunately the benzo class gives me some of the worst reactions. I am afraid that the only thing that will let me sleep is to get a grip on these things.

[gjensen]

Robin, yes it is frustrating. Now that I am off of it, I am seeing more and more how much it did help. You are right. Our families are the unsung heroes. I am very very fortunate for my boys and my wife. They have all been great to the old man.

dkd, thank you very much for the well wishes.

Katy, I did not learn anything. It was as I feared it would be. Another cardiologist. I did like him. He took a lot of time, and he was thoughtful. He was apologetic that he could not help more. He did write a new prescription for a new CCB, Norvasc. He took the time to discuss the ins and outs of vasospasms. He stressed taking them seriously, taking the nitro etc.

He is referring me to an allergist and an autonomic neurologist there that he believe will be helpful. I do not know when these will be. It is a seven hour drive that I cannot make myself, so we will see how it works out. I have a back up plan in April. My GP has been cooperative, so maybe I can come up with something to get me by until, if the Norvasc does not do that for me. I cannot take nitro every morning and night.

[dkd]

Sorry the appointment wasn't that great. I've lost my hope in doctors really. Actually I didn't have much hope in them to start with-haha.

Hoping the new medicine will help!! *fingers crossed*

[looneymom]

If it is possible for you to go back for the other appointments, I would try and go. Vanderbilt does so much research and Tyler's cardiologist speaks highly of this place. He would send Tyler there but these doctors will not see anyone under the age of 18. Hope the new medication helps and will get you through until your next appointment.

[Psalm 23]

I'm so sorry your appointment was not very productive gjensen. I hope the Norvasc proves helpful. I would definitely follow up with the recommended allergist and autonomic neurologist when you're up to it. It's amazing the number of docs we have to go through to end up with an effective treatment plan. Hang in there.