Ancient Mariner

This past week I have ranged from a standing BP of 82/60 in the morning to a sitting BP of 214/99 at 6pm in the evening. In 2014 cardiologists had me on various blood pressure medications. My Neurologist last year put me on Fludrocortisone every morning to help with nOH. I use Hydralazine only as an emergency medication when my SBP is over 180. I am now on Droxidopa for when my standing SBP is less than 100. They are the only BP medications I am on, and only used for an emergency basis. These medications have worked very well but just recently seem to take longer to kick in. A month ago my husband took me to the ER. My BP was 234/116 and my pulse was erratic. I had taken Hydralazine 3 1/2 hours earlier but the BP continued to remain high. The ER doctor gave me another Hydralazine and sent me home when my BP finally was less than 200, since I did not test for having a stroke. The Hydralazine is taken every 8 hours and I realized, after being given the Hydralazine in the ER, that I could have done that at home.

I too am very sorry to hear about your daughter. My PCP is wonderful, and sent me to numerous specialists when I started having very high blood pressure, inability to stand long, palpitations etc. I started doing my own research after multiple tests, doctors and diagnoses over a period of years (since 2014) gave me no answer. A few years into it I met a woman with Parkinson’s who talked non stop about her symptoms. I found her annoying but when I recognized my having similar symptoms, I asked my 2nd Neurologist if I could possibly have PD. He happily handed over Carbidopa/Levadopa medication. This was after he previously diagnosed me with brain seizures and put me on medication for that, which I took for a year. I changed to Neurologists (#3) and found out the tsunamis I felt multiple times a day were actually Parkinson related internal tremors. Upon still having high BP issues (Neurologists #1, 2 and 3 never took my sitting to standing BP), I discovered my low BP when I nearly passed out. It was 53/33. I mistakenly thought I was having low blood sugar for years. Having been hospitalized for an ocular migraine, and taking my log of BP #’s with me, it ultimately led to a diagnosis of Dysautonomia by my cardiologist. At a follow up visit with Neurologist #3, she handed me a paper on Multiple System Atrophy, with no other explanation. I was ecstatic that I finally found an answer, until I got home and read what MSA was, landing me in a deep depression. I eventually found a mentor from the local Parkinson’s website who suggested I try the Neuroscience Center at the nearby University of California. It took four harrowing months to get an appointment. Neurologist #4 ran tests which showed I did not have MSA. (Blood tests also revealed I had very high levels of Vitamin B6, also doctor prescribed, which was causing neuropathy in my feet and legs). Stopping B6 resolved that issue. My excellent PCP told me how much I had educated her. She diagnosed her father-in-law with Parkinson’s and ultimately with MSA because she listened, and took seriously, my complaints. He unfortunately passed away this past December. The upshot of this monologue is I did my own research and was not afraid to ask questions, or change doctors. I recommend keeping a journal of symptoms (something my husband had me do when I was diagnosed with breast cancer, and then radiation pneumonitis.20 years ago) I take a log of my BP’s with me to every doctor visit, hospitalization and test. My husband recently took me to the ER one night when my BP was 234/116. With no indications of stroke, I was sent home even though my BP was 197/84 and I’m pretty sure the log helped spare me from more tests. I have not seen the woman with Parkinson’s since before the pandemic, but when I do I shall thank her for helping me diagnose my own Parkinson’s. As for the first Neurology Specialist I saw, he said “it was all in my head.” My PCP and I both laughed when I said he was right, it is “all in my head”. If you should think I am making light of this horrid condition, be assured I am not. I have found that this is the only way I can deal with it. And there is so much more to this long journey that I will not subject you to. By the way, I love Neurologist #4, she’s a keeper. My prayers are with you and your daughter. I have found meditation useful. There are many sources that can help, I happen to use the Calm app.

I am 5’4 1/2 “ and 122 pounds. I was hospitalized in February 2021 for what turned out to be an ocular migraine due to high blood pressure. I took the blood pressure log I have been keeping since 2014 to the hospital with me. After mentioning that I also had orthostatic hypotension one of the neurologists, after looking at my log, suggested a waist compression panel. He sent me home with one, 9” 3 panel binder (30” x 45”). I used it almost continuously for several weeks when I had low BP symptoms. It is adjustable with velcro. I had it on fairly tight and it allowed me to function much better. In January of this year a new cardiologist put me on Droxidopa 100 mg as needed for low BP less than 100. The combo of Droxidopa and the compression binder allowed me to have a near normal existence. It was only a nuisance when sitting, but still so much better than without it. I used Spanx pre Dysautonomia, and found this binder much easier to use. I also tried compression socks but when dealing with both very high and very low BP, getting the socks off and on multiple times a day was too much trouble, and they really didn’t help at all. BTW the hospital episode ultimately helped diagnose me with Dysatonomia from Parkinson’s. I ended up ordering one from amazon. This one is considered Medical Grade. Good Luck

I had these adrenaline rushes for years with insomnia. I thought I was going crazy. Before being diagnosed with dysautonomia various Doctors had me try a CPAP machine, suggested using CBD (which I did not try after visiting a CBD store), change in diet, all of which did nothing. Finally, when I dreaded (panicked) going to bed at night I recorded one horrible night on my I phone. I made 9 trips to the bathroom and my blood pressure was in the 180’s. I shared it with my #3 doctor’s nurse, who cringed but didn’t know what to do (another story). I got the Calm app. It teaches you to meditate. I did it daily for a year and it did help a lot but I would still have some anxiety at night. When I found Neurologist #4 she put me on 75 mg of Zoloft, taken in the morning, along with my other meds. It took a while but it worked. In addition to relieving the anxiety, it also helped lesson the nighttime trips to the bathroom. I still take my I phone to bed and if I do have trouble sleeping I listen to my Calm app, which works more times than not. I am trying to get up at the same time every day. If I do not exercise I have a much harder time sleeping at night. When you record a terrible night on a mobile phone as it happens, I found it much more dramatic and accurate of how I felt, rather then trying to recall it later. I slept in a guest room to save my husband’s sanity.

I live in San Diego, California, about 8 miles from the coast. I have major problems of head and sinus pressure, headaches and weakness whenever we have hot weather (above 80 degrees). It is especially disabling if we have hot, dry Santa Ana winds. Change in barometric pressure is also a misery factor. For months we have had several days of 60 degree weather then several days of 80 + degree weather. When the fog rolls inland resulting in cooler temperatures and humidity I feel much better. I have secondary dysautonomia due to Parkinson’s. However, it feels more like secondary Parkinson’s due to dysautonomia as my worst symptoms fit into the dysautonomia category. I have no Parkinson’s like tremors, although I had severe internal tremors that pushed up my blood pressure starting in 2014. No one knew what it was until 2018 when Neurologist #3 diagnosed the internal tremors. I have just declined a summer wedding in South Carolina, which from reading this post sounds like I made the right call. Trying to explain it to relatives will be another matter.

I had years of what I thought were sinus infections. Nasal sprays did nothing and I was prescribed antibiotics so many times I hate to count. When the medical community made the automatic writing of antibiotics more stringent, my Primary Care doctor sent me to an ENT doctor who referred me to an allergist. After two tests, it showed I had no allergies but instead had vasomotor rhinitis. I’d never heard of that before. I tried another nasal spray but it dried my head out so much that my eyelids turned inwards. I tried a neti pot which worked, but not at night. A nurse recommended Arm and Hammers Simply Saline. It worked as good as the neti pot and I keep a can next to my elevated pillow to use at night. I only recently learned vasomotor rhinitis is another form of autonomic dysfunction. That meshed with my recent diagnosis of dysautonomia due to Parkinson’s. (I cannot use antihistamines because of my blood pressure which can get exceedingly high 234/116, as well as drastically low 56/33.) My symptoms are the worst when it is hot and dry and the Santa Ana winds blow here in Southern California. The barometric pressure and temperature fluctuations are also problematic, which of course is about every day but easier to deal with when it’s cooler outside. Knowing that all these crazy symptoms I have are all related doesn’t make the symptoms any better but at least I’m not being pumped with antibiotics any longer, which is not good for the gut.