gjensen

Thank you Katie.

Yes. She gets a good boost from the Welbutrin, and it even raises her blood pressure. I have heard of others call it stimulating. Raised BP is a possible side effect. I never looked into it for this reason. I have trended towards sympathetic over activity. Caffeine, as much as I loved coffee, is no longer my friend.

That is a hard to call to make. One you will make your own decisions on. You want to cover all of the bases, I am sure. Are you managed well? How is the quality of your life?

Have you been investigated for MCAS? I was skeptical of the whole thing, but it has gotten to a point where I cannot ignore it anymore. I ask because you mentioned the allergic reactions.

A good thing about the punch biopsies is if they show SFN, then you have it. The bad thing about them is that they do not 100% rule it out.

I am not sure what you are calling night time hot flashes. Is it night sweats?

What are your Sjogren's symptoms?

A friend of mine finds that Welbutrin is a good substitute for her.

I find drinking water etc. is a habit either way. I do well in spells, and then not well at all. I have to keep drinking to keep drinking. If that makes any sense. Kind of the body in motion stays in motion . . .

That is good to hear. As the staff enjoyed it that day, some others did, and now even more are. She shared a lot with many.

Thank you for sharing this.

@ 5,000' it can still get pretty cold.

Have you considered San Francisco, San Diego etc.? I live on the opposite side of the country, but they have a very mild Mediterranean type Climate. It rarely gets hot or cold.

How do you do with the humidity when the temps are mild?

The Charlotte group would only be an hour from me.

Rich, the patches do vary in dosage. I am reluctant to comment because POTS patients can have odd reactions to many things, as you know.

It would be easier to limit the initial dosages with gum. You do not have to swallow, but it is difficult not to. I would want to start small and very small.

Yes, my PPs have been narrow while standing. That has been consistent throughout. I do not feel sharp when they are that close, but usually I can tolerate it for lengths of time. Sometimes, I cannot at all.

I have had nurses do double takes concerning the PP. I tell them to dis regard it and that it is a long story. LOL.

They will also not call my BP OH because my bottom number does raise, though the other can drop 30 points.

What I cannot get over is the HR. I have been around twice that high for almost three years.

For the sake of conversation and illustration, I just did a poor man's TTT.

Supine HR 50, and BP 100/70

@ 1 minute HR 66, and BP 94/74

@ 3 minutes HR 66 and BP 98/78

@ 5 minutes HR 71 and BP 92/82

This is bizarre to me. For the last ten days, plus or minus, I would not even be considered to have POTS.

My HR is too low standing, but is the same Supine. My typical of late is a HR of 50 supine, and 57-65 standing (or walking). My BP is running a touch low, and dropping a bit up right.

Has anyone experienced this or know of one that has. I have been sick for going on three years. This to me, is bizarre. I never thought I would see standing HRs in the 50s and 60s.

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.

This is great news Rachel. I was wondering. I hope to hear more.

Sarah, I am more interested in seeing where I am one and two weeks from now. My standing numbers are still normal. My resting HR has dropped into the 40s though. As low as High 30s. My BP is holding steady but I do not feel like it is today.

I do not think it is a coincidence, the timing. I doubt that I will stay here though. Heck, I would rather my HR be higher. I would feel better. I guess it is a period of time finding a new normal.

I have had blood tests for celiac, and they were negative. I do not suspect it. Regardless, it is eliminated from my diet.

Thank you Angelloz. I would like to see all of us get some sustained improvement.

Psalm, I try to be realistic. I am naturally skeptical of everything. I cannot help but note the response though. It is interesting. I wish that we knew and understood more.

I would do low dose gum.

Katy, I hope that you feel better soon. I would be interested in the articles, but only when you feel well enough.

I am not getting my hopes up, or anything silly like that. I do think it is interesting.

I have been reacting to more and more foods. I have been off of medications for some time, and for the same reasons.

In fact, it has been foods that I can eat, but I may be making progress. Time will tell. I have lost ten pounds in a month (pounds I could not afford to lose). I have been on a partial involuntary fast of sorts.

Some recent allergy testing revealed positive IGE for wheat,corn, soy, tomatoes, shellfish, among some other things. These things have been eliminated my diet.

Recently, I began reacting to cigarette smoke. A 30 year habit for me. Now I have been off of them for two days. I am chewing nicotine gum to help me quit.

What has caught my attention is that my BP and HR is normal. Not my new normal, but an actual normal.

Now I have had better days, and better spells all through the time of being sick. It has been up and down for me. I might get a better week, and then two really bad weeks etc. However, I have never had truly normal numbers. A better week has only meant tolerable. The timing of this is interesting to me.

And what I mean by normal is 80 bpm and 120/80 standing. I have not seen that in almost three years.

I do not know anything about e cigs. They may be safer than cigarettes, but there is no long term studies on them.

Stop the press on my remarks. Apparently I have MCAS that is getting worse. Now I am reacting to the cigarettes. It looks like I will quit the hard way. This will be tough.

Some speak well of Vanderbilt. I would not know who to suggest on the East Coast. I have been to a few, but did not make any progress.

What gets me, and I laugh at, concerning elevators is how long it takes me to recover. I feel like I am holding on for quite some time after. Then I am laughing at myself, and no one around me knows why.

LOL. Elevators do that to me to.

Another thing that gets me is walking down a floating dock. It messes with me. I feel like I am going to fall in.

These things did nothing to me before I got sick.

Since I became sick, I developed this habit. I attribute mine to a chronically stuffy nose (came with becoming sick). Keeping my nose clear is helping me to change this habit.

I agree Rama. We would have to make our own choices here.

I still would not recommend it, because it has been such an ugly habit for me, and for a long time. I was a regular smoker by 12, and I am almost 42. I am fortunate that I do not have worse.

I am having a hard time motivating myself to quit because it does help me, and I am reacting to everything else.