Sarah4444

Thanks!

Hi Tia,

I always find this confusing too. On my TTT my bp was relatively stable so I got a POTS diagnosis, but in real life it often drops when I stand (and last year was even falling when I was supine). Other times it goes up when I stand. This makes it hard to know where we fit in terms of categories.

Have you registered to be contacted by this network when they are looking for research subjects? I noticed the only category for POTS is hypovolemic. I'd like to register, but don't know if I am hypovolemic. It's all very frustrating.

firewatcher,

Can you tell me more about the pituitary bright spot? I hadn't heard of that before.

Thanks!

I have noticed that many people on the mastocytosis forums list severe skin pain as one of their symptoms. I am lucky not to have that one.

Julie,

What you don't mention is that the whole time you were sick with this too - I don't know how you managed. I'm am terrified, inspired, and reassured by your and Mack's story, thank you for everything.

Sarah

Me too. Also don't know why.

I have tried to just increase salt in my diet but I don't think it was doing enough. I am now taking 1g salt capsule three times a day (with meals or else it's nauseating). It gives me a boost, so I'm thinking of taking more.

Me too. It was really bad when I was pregnant.

I think Julie is right, that brain fog is at least in part caused by chronic reduction in oxygen getting to the brain. I noticed severe difficulties with attention and concentration (and memory) when I was most sick, and had I been an adolescent would probably have been looked at for ADD.

The more success I have treating POTS over time, the less brain fog I have. Things that seem to have specifically helped me with this symptom are avoiding gluten, taking salt capsules, gently/slowly increasing exercise, midodrine, and getting some sleep after starting doxepin.

Also, I can feel when my body can no longer get blood to my head - I just start to feel odd, then tired, then dizzy and unwell...if I let it go too long before lying down, it takes longer to recover/bounce back once I can lie down. It's hard to explain, but I need to carefully balance lying down when I feel this, and not lying down too much.

I have lots of trouble with this too. I talked to my neurologist about it and she says it's probably and indication of the severity of cerebral hypoperfusion. If we aren't getting enough blood/oxygen to our brain even things like concentrating can be difficult and tiring. I went to friends' last night, and actually did better socially than I have done for years, which was really hopeful for me.

You're very welcome. I saw an autonomic specialist for my POTS. The initial cardiologist I saw wasn't very helpful (or kind) but he did prescribe a low dose of midodrine, which helped a bit. The POTS specialist increased the midodrine to 10 mg every four hours and 5 mg evening, and that helped more. I find I have to treat both the POTS and MCAD symptoms simultaneously and in a kind of balance to get any improvement. I think that Nalcrom/Gastrocrom (mast cell stabilizer) is an important med for me too.

I am still working at this, but am happy to answer any questions I can.

Hi there, sorry you're having a bad week. The combination of meds listed below seem to be gradually helping me, along with very slowly increasing exercise. I had also been underestimating the power of salt I think - I was eating as much salt as I could stand, but when I actually starting taking sodium chloride capsules with meals I noticed a real difference.

I am still quite up and down though, with real difficulty around the time of my period. But overall it feels like instead of gradually (and then rapidly) declining, it's more like two steps forward and 1.5 steps back now (if that makes any sense).

When I am "just" feeling POTSy I feel better when lying down, but I have also had long periods of time when I feel worse lying down, especially flat on my back. I have a theory about it. When I had my catecholamine levels tested, my norepinephrine and adrenaline are low when supine, very high when tilted/upright. It feels like I have been having low level anaphylactic reactions for so long that my body coped by creating this high adrenaline state to offset this. When I would be having terrible trouble lying down I would find sitting up would make me feel better - I feel like I am having anaphylactic symptoms and then changing my body position to upright and raising my adrenaline levels decreases the anaphylaxis in the short term.

I am identical to Julie. Without meds my supine bp is about 90/60 and when I would stand it would sometimes go up to about 110/70, other times fall. When I was really sick it would basically collapse every time I tried to stand, not registering on the monitor the first few times and then coming in low (60/45). On meds it's now higher and more stable - I have caught a couple of 150/110s, but it's usually close to normal or lowish. I still have the 30 bpm heart rate increase on standing.

This is the med schedule that has been working for me:

Half and hour before getting up: 10 mg midodrine and .125mg Synthroid

When getting up: 10 mg Zyrtec, 150 mg Zantac

10 mg midodrine every 3.5-4 hours, 5 mg in evening (total 35 mg)

200 mg Gastrocrom dissolved in warm water 20 minutes before each meal

Singulair 10 mg at 11 am with second midodrine dose

Zyrtec 10 mg at 3 with third midodrine dose

1 g salt capsule with breakfast and lunch

30 mg doxepin and 150 mg Zantac before bed

It has taken me months of trial and error to fine tune this and it's still not perfect. I take Benedryl 50 mg when I feel breakthrough anaphylactic stuff (low bp, tachy, itching, severe flushing, etc.). I also take pain meds prn. But along with very gradual and challenging increases in exercise, I have gone from bedridden to driving again (short distances) and just beginning to feel like there is some pattern to the chaos. With this combination I feel I have minimal side effects, just a little drowsiness.

Yes! I forgot about doxepin. I'm up to 30 mg every night and I think it's one of my most important meds.

I'm so sorry your having this trouble. I dont' seem to react to the meds themselves, so I'm lucky.

The only thing I can think of is to start Gastrocrom, to see if you can make your mast cells less reactive and then maybe start to at least tolerate some anti-histamines to try to help all the symptoms.

Can you take Benedryl? When I was still really sick I was so itchy, got hives a lot and took Benedryl regularly on top of everything else until things started to calm down a bit.

Also, for me the mast cell activation and POTS are a vicious cycle, and I need to treat both - as described by the POTS/MCAD article, I think the overactivity of the sympathetic nervous system causes mast cell degranulation, as well as the histamine etc causing low blood pressure, etc. So midodrine/salt/fluids, etc. make my MCAD treatment work better and vice versa (I think). But it took me a long time to find the right balance and it's still a real work in progress (and some days I really feel like I'm not there yet either).

The Vanderbilt group diagnoses MCAD with a four hour urine collection after a bad flushing episode (8 out of 10), and they measure methylhistamine. See the Shibao (2005) article "Hyperadrenergic POTS in Mast Cell Activation Disorder".

I don't get IV saline (although having some after my TTT sure seemed to help), so I can't answer your question, but I just wanted to say hi and welcome.

In my personal experience, when I am most sick mast cell activation seems be a prominent feature of my illness. I had chronic diarrhea and nausea for well over a year with this, but last year the pattern would be waking early in the AM with urgent diarrhea that would recur on and off for hours some days.

Taking MCAD meds, particularly the Zantac/Zyrtec combo and Gastrocrom have really decreased this particular problem for me.

Thanks for posting this, Julie - it does look complicated but I am going to try to absorb some of it. It sure has a good name (No!...Oh No!...)

I'm sorry you're having such trouble and wish I had better suggestions. For me, midodrine at that dose didn't do enough - I only really got benefit once I was on 10 mg every four hours, then 5 mg in the evening (35 mg total).

Have you tried Zyrtec? Gastrocrom? These seem to be helping me. And just to make it more complicated, it seems that even having a virus is enough to set some of us off, so it might be the underlying infection that is messing you up (at least in part).

I don't know if this is any comfort to you at this point, but I felt much like you about 6 months ago, and with time and POTS/MCAD treatment the tornado feeling of symptoms seems to be settling a bit (KNOCK WOOD!). Doxepin is one of my really key meds. Hang in there.

My symptoms do not always correlate with my blood pressure. My bp can be normal but I'll still feel awful. I take my doses of midodrine at regular intervals, not based on bp measurements, but do random checks once in a while just see make sure I'm not hypertensive. Often when I feel bad I will have the distinct postural tachycardia without any substantial bp change, other times by bp goes up when I stand, other times it goes down...it's too complicated to try to match the med dose to such unpredictable observations.

Thanks, green. Has anyone tried this?

(Sorry Lenna, I now realize you answered this. I have been away and was working my way through the posts in reverse chronological order. Duh.)

Thanks for this info, rama. I am interested that folate might be involved with NO. When I was planning to get pregnant I took large amounts of folic acid (I have spina bifida) and felt better than usual I think.

Lots of research does seem to be going on now in this area, and I am glad about this - gives me hope in case my kids end up with difficulties.