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Thanks. I have considered one and this strengthens my resolve. Does it work on Android phones?

The “other” symptoms sound like my hyper POTS norepinephrine surges. Maybe ask about a catecholamine test?

I developed it at 52 and have been disabled ever since. My neurologist said they see patients from 8-90 with peak diagnosis around puberty and menopause. Obviously hormones, including during pregnancy are involved somehow. She said sometimes people that develop it early in life do get better but those that develop it older tend Not to improve as much. I have heard that it can improve after pregnancy but I suspect until they find a cause it never really goes away.

I had this for awhile when I was first diagnosed. Got the med student all excited. I was seeing a neurologist in the states. I had a brain MRI. They found nothing (ha!) wrong. I was never given anything and after getting some decent sleep for a few months it went away.

@Bluebonnet08 my neurologist tested my catecholamines by urine and blood test. As Pistol says the blood test involved laying in a quiet, dark room for a half hour, blood draw, then standing 10 minutes, blood draw. I was first given clonidine which tanked my BP too much then switched to methyldopa. It helps a lot. Not perfect but what is? My attacks are similar to Pistol’s. The other thing that helps is to fluid load, 1 liter or so before I know I am going to go somewhere or be upright for any length of time so I don’t get the BP drop which seems to set everything off. Then my BP goes high but my cardiologist tells me that’s ok temporarily. I don’t know where you are located but I have awesome, awesome Drs and staff in Milwaukee. PM me if you want their contact info.

I get similar attacks. Methyldopa, an alpha blocker for my hyperadregenic POTS really helps. My PCP said it is safe in pregnancy. Have you had your catecholamines checked for hyper-POTS?

Congrats! Wisteria are gorgeous and worth the wait!

Anybody else find they have to increase fludricortisone over time? I had been relatively stable BP-wise for three years on the same dose but recently my BP and orthostatic drops are getting worse with heart rate-a-go-go added in. I have increased my fludricortisone which is always a balancing act to not get hypertension. Additionally, I have also been sleeping longer (9+) hours and feeling exhausted on waking. I force myself to get up after 9 hours but wonder if the combination of the two issues maybe is related to adrenals? I see my specialists on the 16th and 23rd and will ask them, I just wonder if anyone else has ideas? Thanks so much.

On the advice of my neurologist I drink 500-1000mls of water and take my fludricortisone and a couple of salt capsules 45 minutes before I get out of bed. Are you sleeping 8 or so hours? Getting my sleep normalized with meds helped me manage mornings. I agree with having adrenals checked.

I live in Wisconsin, always have and weather extremes are hard. Especially if I am already flaring. Are you taking anything for the adrenaline surges? Clonidine or methyldopa?

I agree with both answers. Stress, any kind good or bad send me into terrible flares that sometimes take several weeks to recover from. Do you have a specialist there yet? I always go back to basics, rest, exercise and extra fluids/salt.

Thanks Dizzygirls. I have undifferentiated connective tissue disease which in my case is not quite lupus but something on the spectrum. What I don’t understand is the sore throat. I’m just curious what others get as a flare from over exertion.

We recently had a discussion of tips for dealing with over exertion but I am wondering what your symptoms are. Besides soul destroying fatigue I get low-grade fever, body aches, cold symptoms, sore throat, a bit of post nasal drip and erratic BP/HR. BP sometimes low, sometimes high same with HR. I don’t which is POTS except BP/HR, UCTD (mouth sores and mala rash definitely) or maybe CFS. What are your symptoms? TIA.

My POTS neuro is fantastic. Much more thorough than my cardiologist. She diagnosed me. She ordered all tests, including gastric emptying prior to diagnosis. She referred me to a POTS conversant GI.

Yikes! What a mess. I am very sorry you had to deal with this. Thank you very much for sharing this. I have had bad experiences with insurance companies and providers in the past but that was before I qualified for Medicare. I will print this off and keep it because chances are good I will forget!

I will say that after my autoimmune disease diagnosis and subsequent starting of hydroxychloroquine, a DMARD, I saw an improvement in fatigue and muscle and joint pain and sleep. It hasn’t done anything for POTS and wasn’t dramatic but any small improvement helps.

@Clb75 may I enquirer what other autoimmune disease you get IVIG for? Feel free to pm me if that’s better. I certainly will update everyone. I am hoping we can use this as ammunition to get my insurance company to pay for IVIG and just figure out what is going on. I was diagnosed with MCTD after POTS and am post-viral onset. My mom is an autoimmune disaster, 4 different diseases and that side of the family is crazy with autoimmune diseases. I am pretty positive my POTS is autoimmune too. My rheumatologist isn’t keen on IVIG but neuro and cardiologist are. Have you seen this https://vimeo.com/243160944? It’s from a Dysautonomia International conference recently. She talks about her protocol and doses for refractory patients. I plan to get my blood drawn and sent off Monday although my neurologist said there are issues with shipping but didn’t give me details. I *think* I have that sorted with FedEx.

I heard back from them when I filled out the form on their website but not the email address on their contact page. Go figure. I will check the Phoenix rising site as I have questions on shipping. Thanks so much!

Has anyone been in contact with this German company recently? I was going to send my blood sample there for their POTS autoantibodies screening but am no longer getting email replies and the new phone number on their website is “no longer in service”. Previously they were very responsive to emails. This is the only company in the world that does this testing. Thanks for any info.

Oh I hear you Pistol. I’ve “only” had full blown POTS for 3.5 years but like you am older, 56. I am disabled and despite doing everything my Drs and physical therapist tell me to do I am wildly unstable and housebound. I feel cheated sometimes because I finished my PhD 2 years before I got sick and had research plans. My husband and I had narrowed plans to retire to a few locations and then travel the world. Now we can’t move away from my specialists and I can’t ride in moving vehicles a few miles to friends houses even if I had the energy. Yes, I have lost a lot but I am frequently happy. I had a wonderful life of teaching, traveling, gardening and dogs and I try to remember that. My husband is amazing (most of the time 😉) and I still have dogs and can occasionally do a few things in the garden. I am thankful that I got so desperately ill at 52 because it allowed me to do many things beforehand. I try to focus on the things I have now and as Bluebonnet says hope that some researchers somewhere will figure it out. It would be awesome if that were soon. I also get a free pass to sit and read, my passion, whenever I want. When I am down I read Toni Bernstein’s book How to be Sick. Don’t get me wrong, I am terrified of getting worse as I get older and do contemplate what I will do at that point but I am not there yet. We are not alone and I find comfort in that. Feel free to pm me whenever if you want.

Great descriptions @WinterSown. Thanks! I will forward them to family and write some down for Drs. My suburbia is quiet, tree-lined streets with squirrels that drive the dogs nuts!

I hate this! Trying to explain it to healthy people is impossible. I can barely tolerate the ride in a car to PT and forget anywhere else. I asked two POTS neuro specialists whether it was ANS or CNS. One said you couldn’t differentiate, the other said he sees it typically in non-headache migraine. Options were increase beta blocker or try topiramate. The beta lowers my BP too much, the first two doses of topiramate gave me a headache but I guess that goes away eventually so will soldier on. My POTS conversant PCP said modafinil might help. I took a full dose of it for fatigue and over stimulation once and that *was* like what LSD must be like! Everything was so detailed and such amazing colors! A half dose was much better. I live in serious suburbia with lots of large trees in the yard and sometimes the leaves moving and shadows drive me nuts. I love the outdoors but have to retreat indoors. Given how short our summers are it makes me sad. I think from now on I will just declare a spa day!

@racingheart77, I weighed 84 pounds! I’m not 84 years old. Yes, it’s different from heartburn. I also get chest pain which is very different.

@PistolI take generic plaquenil and occasional low doses of prednisone. The plaquenil helps the fatigue also but I am 99% certain my POTS is autoimmune.

I had/have horrible GERD like pain. I remember having it on the TTT. I saw on some DI video some Dr saying this isn’t uncommon in dysautonomia. In my case it was extreme and eventually I could hardly eat. I was hospitalized when I hit 84# and had to have TPN for 6 weeks. I think, but don’t recall much from that time, that they said it was neuropathy. Antacids didn’t touch it. I’m on gabapentin now which after finding the correct dose really helps.