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Thanks everyone. Katybug, I said to my PT 2 weeks ago I felt like I had crazy inflammation so I am sure you are correct there. I'm beginning to think mast cell issue too but no one in my area diagnoses/treats it. My neuro ordered a 24 hour urine test but it came back negative. I started myself on famotidine and loratidine and will ask the PCP about a stabilizer. He's very receptive. Foxy, please keep me posted. Thanks again.

Anyone have experiences to share about this? I had my first session and am flaring but really want to be able to do upright exercise. I have been using a stationary bike for 18 months every third day but it hasn't helped me maintain vertical exercise. Thanks.

Hi Everyone, I have been really struggling recently. Everything is flaring and I welcome any ideas as to what is going on and how to treat it. I had been having increasing tachycardia on standing but it wasn't too bad (90s_100s). I started extremely low dose metoprolol which after about a week caused crazy fatigue but kept the heart rate very good. I switched after about a month to nadolol but the fatigue kept up so I weaned myself off. I *think* the beta blockers also induced a lupus flare as my hands and feet got extremely painful. They haven't bothered me since June. My rheumatologist doesn't think the beta blockers are responsible but put me on prednisone for 20 days which is helping both the fatigue and pain. I have been off the beta blockers for 8 days but my heart rate is 70s lying down or in the recliner, upper 80s sitting and 100-120 or higher standing. Everything else goes nuts too, temp regulation, flushing, GERD, tingling tongue, etc. What is weird is my bp is good for me (130s/80s) but as the day wears on my hr just goes higher and higher regardless of bp. I'm also on fludricortisone and low dose clonidine as needed. Any insight into what is going on is welcome. I really don't get the hr going up as the day wears on and why most new meds are fine for about a week then I get crazy side effects. Thanks.

Yep, me too. And for the first time pre and post dysautonomia diagnosis positive ANA test. Unfortunately I don't know what it means.

Prov31mom, What tests were done to determine autoimmune form? Katie, may I ask what meds you take besides Singular? I have suspected MCAS. Thanks. P

I too am older. I was felled by a virus at 52 and will be 54 next month. I also was a professor and had to give up work and am housebound. My two worst symptoms from day to now are fatigue and insomnia. I cannot keep weight on and am hyperadregenic POTS. My GI track is all messed up and I was diagnosed with Lyme (chronic) as a potential cause. I have been treating Lyme since September '15, dysautonomia since March '14. Florinef helps, salt and water and sleep when I can get it (tried many, many drugs). I'm currently being evaluated for mast cell activation disorder. I have Ehlers-Danlos according to the neurologist but no idea what type of Dr to see for that. I miss teaching and the interaction. It's lonely being housebound. A book I have found helpful is How to be Sick by Toni Bernhard. It's Buddhist in orientation and she has POTS. Keeping hope alive is the best medicine.

I saw a new ANS neurologist today who added "probable EDS" but didn't tell me if I should see another Dr for treatment, further diagnosis etc., which I would like to do but I don't what type of Dr to see. Thanks.

I have had similar GI problems (diarrhea, cramps except for GERD, which started with the POTS), literally all my life (colic as a baby). I was diagnosed with lactose intolerance at 14 and have total intolerance to whey. I am not celiac, had an endoscopy last year when hospitalized with severe malnutrition weighing 84 pounds. The stomach pain (GERD?) led to that and 6 weeks of TPN. I have cut out gluten but still struggle with weight. I had weighed 105, now 95. My neurologist just prescribed cyproheptadine for appetite. I don't tolerate magnesium and I know many suggest it as a supplement. My GI issues don't appear to be related to POTS flares but many of the meds to treat it have set off diarrhea (no cramps). I had all the tests, negative. I eat lots of nuts for fats and calories. I joke I'll get diarrhea if you look at me wrong. You are not alone.

Hi Kris, I'm so sorry you are going through this. I understand the feelings of too many Drs, too many medications, too many trials of new meds and not seeing improvement. Also, not having someone to talk to that gets it. I wish I could suggest something useful but I do think a good cry will help. Just know you are not alone. I sometimes take vacations from my supplements but only stop prescription meds if I see a definite cause and effect. I document EVERYTHING, food, bp/hr, symptoms, meds, supplements, exercise, activities and how I feel. I'm seeing a new AND neurologist on Tuesday and spent time over the past two weeks going over all my old diaries (16 months worth) and found a couple of correlations I hadn't before. Please keep uw posted. P

Hi All, I realize that these are probably a stupid questions but I am confused. I have read different things concerning both. 1. In hyperadregenic POTS are we supposed to increase salt and water intake? 2. Does it matter if we get sodium chloride (salt) or another form of sodium (bicarbonate)? Thanks. P

I have what I thought were anxiety "attacks" at certain times of the day. Turns out they are norepinephrine/epinephrine surges. You could ask for a test for that (saliva is more accurate I think). I think anxiety also is fairly common with Dysautonomia. I have Lyme disease along with POTS and plaquenil is used to treat confections that commonly occur with tick borne diseases. When you take any meds that hit the Lyme or others you get a Herxmeier reaction due to die off of the critters releasing toxins and you feel terrible until the body can get rid of the toxins. Lyme causing POTS is controversial but I think many Dr's now acknowledge it. What mainstream Dr's don't recognise is the chronic form of Lyme which has a symptom list that is extremely similar to dysautonomia. If you live in a known Lyme area you may want to get a test for Lyme by a Lyme literate Dr (llmd). The test that most Dr's use does not catch ~50% of cases, including me. I was tested 3 times. Just my experience. Good luck.

I'm so sorry you had to go through that. It's so frustrating dealing with this stuff without idiots like that. I sincerely hope you get to the bottom of it all.

Thanks.

Becia, a friend told me to get the contraption to help put the stockings on (thigh high) and it is wonderful. I couldn't get them on otherwise. I got the contraption at a pharmacy that sells the stockings.

Hi. I've been desperately trying to figure out any reason for flares without much luck. I have noticed that days I do floor exercises or yoga seem to be much worse than biking days. I know orthostatic changes are a hallmark of the disease but would this mean I'm just not well controlled on current meds, salt, fluids? I have only checked my BP HR after I've been sitting post exercises and feeling lousy and generally BP is a tad high but where the Dr's indicate it should be. HR is around 60. I haven't checked vitals while on the floor. Any ideas on how to strength train at home without getting on the floor?? Thanks.

Ks42, thank you, that gives me hope. What did you do for detoxing? Anybody else have ideas? Obviously the IR sauna, magnesium baths are out. I don't tolerate magnesium sulfate anyway, let alone the heat. I'm doing bur bur, pinella, parsley, alka seller gold, loads of supplements, ionic foot baths. All suggestions welcome. The hope you are providing is priceless.

Issie, thanks for the info. I am sorry you not getting help with the doxy anymore and the new med is causing trouble, I totally relate. How do you tell the difference between a POTS or Lyme flare and a herx? I only know I'm herxing with the fever, flu symptoms. Lots of other things feel like POTS. I only know it's POTS with the BP HR swings.

Thanks everyone for the replies. One more question. Since I started Lyme treatment my POTS seems to have gone nuts. I know about herxing but has anyone else experienced this? I had been exercising about 40-50 minutes on the bike every other day and the other days doing strength training. I just can't manage that anymore. It's very discouraging. I do feel better at times but also worse others.

Hi, I'm struggling with Lyme induced POTS. Started doxycycline for the Lyme a month ago. I have had definite herxing (flu feeling etc) rather cyclical but Sunday and today checked my bp/hr when feeling poorly and my HR was elevated for me to where I get POTS symptomatic. HR BP had been fairly stable for about a month. I know many of you have battled Lyme. Can a herx cause a POTS flare and/or HR increase? Thanks.

Sending virtual hugs. Seems we are both struggling today. I just want to get outside and enjoy one of our last 70+ degree days. I hate winter and every nice day lately I've been flaring. We will get through this. Feel free to pm me whenever you need to vent. I don't have the ability to not emote . Just how I'm wired. Take care.

Thanks, Ish. Yes, very jittery, wired. Must have to do with the neurotransmitters which is what we are trying to treat! Argh...I had been doing better. Can't do the bike etc these last few days.

Thanks. I was told I have hyperadregenic issues. Not sure what that means. I think I won't take the BP meds tonight and call Dr tomorrow. May call pharmacy later. Eating salt and pushing even more fluids now. I do keep track of bp/hr when changing meds but not otherwise, I get too hung up on the numbers. I try to drink a liter of water in the couple of hours before I get up. I really appreciate your help.

Hi. I have just started metoprolol s.r. and terazosin at bedtime for elevated neurotransmitters/epi/norepi to help me sleep (which seems to be helping). I already take florinef in the am. All are extremely low doses. I'm supposed to titrate up the first two. This morning I checked my bp/hr sitting to standing no stockings on and the BP was good but the HR was 95 and I am very symptomatic (always when HR exceeds 90). I have had these flares other mornings but didn't check bp/hr. Can anyone explain if the BP meds are causing this? I'll call the Dr tomorrow but any advice on how to handle today or why this is happening would be most welcome. Thanks

Thanks. Should we all ask our Dr's to add it to our charts?? Might it help with insurance etc?

Hi, I've been ill for just over a year. Diagnosed with OH/POTS in March 2015. Recently diagnosed and started treatment for Lyme disease. I know that with both you get good hours/days and lousy hours/days. I also know that Lyme causing dysautonomia is controversial. I also know about the Herxmeier reaction causing flares and new symptoms in Lyme. I find myself struggling to feel hopeful during the bad hours (haven't put together a whole day yet) and just wondered what anyone else did. I also have always felt the need to be needed/useful and given my present state struggle to find something I can do. I've done some transcription of bird phenology records but would love other ideas. Thanks. P