Dale H

Interesting, I might have gotten some bad info about a non-weight bearing tilt table test. I'll check into it some more. Thanks!

I have a working Dx of POTS, when hospitalized back in March for multiple episodes of presyncope my orthostatic pulse would go from 62 to 124 without being orthostatic on BP which would stay pretty steady. I was scheduled for a tilt table in May which got cancelled due to Covid-19. Now scheduled for August. I'm very anxious as I would need to get off my florinef .2mg daily and paxil which I just started. I've been feeling like my POTS is getting more under control and I don't want to go into 5 days of POTS h*** by quitting my florinef and then climbing back out of the POTS hole again. I don't have enough time left to do a slow taper off the florinef. My PCP said taper down .05mg every 2-3 weeks. I'm sure the tilt table will confirm POTS but will the results make a meaningful change in my treatment which is currently .2mg florinef daily, 6000mg sodium daily, 3 liters clear water daily and exercise every other day. Also the tilt table I'm scheduled for is a weight bearing tilt table, not the kind where you are strapped in so there is no weight bearing by your legs. Does this make a difference in results? Thanks!

I had my Botox injections 4 days ago and have had about an %60 - %80 decrease in tension headaches, which is GREAT! I would probably be feeling even better but with the increased relief I've been doing things that really cause and make my headaches worse such as more computer and smartphone time. Bedtimes are much better.

I've been on .2mg florinef daily for 5 months now. It has helped with my POTS symptoms along with increased sodium and fluid intake. I've been getting bad headaches and supine hypertension when I go to bed. Twice I've tried to taper from .2mg to .15mg, made it 6 days once, but my POTS got so bad I went back to .2mg. I've been told by a very knowledgeable NP that has lived with POTS for 8 years that florinef is a crutch and I should be able to taper off of it by combining adequate lower body exercise, cardio conditioning and keeping up my sodium and water intake. While on florinef my pulse spread from lying to standing will get down to 8-12bpm, when I tried to taper my pulse spread approached 30bpm and I was quite POTSY feeling. My labs keep coming back fine on potassium, initially my potassium was low so I take 20meq every 3 days and that seems to keep me steady. I'm hoping to try another florinef taper after I see my doc again next week. The headaches are getting old and I've had increased palpitations that I wonder if are caused by the supine hypertension. Palpitations get real bad when I lie down and go away when I stand.

Salt is sodium chloride NaCl. On my Morton Iodized Salt container 1/4 tsp (1500mg) of salt contains 590mg of sodium. My Saltsticks jar indicates that each Saltstick contains 215mg sodium so 3 Saltsticks would be 645mg sodium, 55mg more than a 1/4 tsp of table salt.

My Dr has me on 6000mg of SODIUM per day. I had the same confusion at first as I bought some 1000mg SALT tabs thinking there was a gram of sodium but later realized that SALT is sodium and chloride and that the SODIUM content of the 1000mg SALT tab is only 394mg of SODIUM. I now track everything by SODIUM, which is what I'm supposed to be getting 6 grams per day of. I steer towards some high sodium content foods and try to get the majority of my sodium load early in the day. For instance I'll have a whole can of Campbell's Beef Vegetable soup for breakfast which gives me 2225mg of sodium. Chicken broth is another great source of sodium ~870mg in one cup. I aim to have about 4500mg sodium in me by 2PM along with 1.5 - 2 liters of water. This helps get my blood volume up for the day after dehydrating through the night while sleeping. I'm also taking in 3 liters of clear water per day. This is addition to other drinks such as Boost or Gatorade. Some good sodium sources I've used are Herb Ox Chicken Granulated Bouillon (870mg sodium/tsp) replaces the coffee I used to enjoy. Saltstick caps (215mg sodium) or 1 gram salt tabs (394mg sodium). 3 slices of turkey bacon with breakfast gives me 420mg sodium. Dill pickles are also loaded with sodium. I find it easier and more palatable to get my sodium through food instead of salt tabs which can cause indigestion/heart burn. I will use 1.5 salt tabs first thing in the morning with a protein bar and .5 liter water to help get me boosted on sodium and fluid. Hope this helps, -Dale

I have cervical stenosis C5 level and bilateral nerve impingement C2-T1. It was causing a lot of pain and headaches and some as yet un-diagnosed POTS symptoms. I had PRP Lysate treatment of my C2-C5 facet joints along with a C7-T1 interlaminar PRP injection. Amazing improvement in pain but in the months afterwards started developing severe POTS symptoms. Talked to the doc again about PRP injections and he said with a working POTS diagnosis that injecting into my neck facet joints was definitely out as a lot of the autonomic nerves run through there. Was probably already on my way to POTS from previous injury and getting the pain relieving PRP Lysate injections may have accelerated the process.

My PCP had me try a headache cocktail of 20mg prednisone, 10mg prochlorperazine, .5mg lorazepam and 25mg benadryl. This helped my bedtime headache enough that I didn't need to ice my head with ice packs. After that trial he started me on a 7 day prednisone taper (5 days in) and still taking 10mg prochlorperazine. I'm also on .2mg florinef daily. I've noticed my POTS symptoms are improved while on the prednisone but know it isn't a long term option. Because of Covid-19 haven't been able to get a tilt table test to confirm POTS or type but believe mine is due to damage from a head (TBI) and neck injury 5 years ago. Never fully recovered from that and had bad headaches that would start at the base of my skull and then spread into a migraine like headache. Used to treat with fioricet but found after I developed POTS fioricet helped the headache but made my POTS much worse. Just got a round of Botox injections (migraine injection pattern). Keeping fingers crossed that will help. I'm a little anxious to see how my POTS is when I get off the prednisone. At doc office sitting BP was 148/84. Pre-POTS I used to be 116/72. I'm hoping to taper down or off the florinef at some point (required for tilt table). Have been experimenting with my exercise program to find what I can tolerate and what works. I now exercise every other day. Recumbent bike on one day and the next exercise day lower body isometrics. I think before I was exercising too much (bike and isometrics every day) and making myself worse. Any advice on tapering florinef would be much appreciated. I have a feeling if my BP is lower my bedtime headaches won't be so bad. I've taken my BP while lying in bed with a headache and found it to be 166/90. Kind of a conundrum as the higher BP helps with my POTS symptoms.

Thank you for the input, I'll discuss with my PCP. I'm on .2mg florinef daily which gives me supine hypertension, especially at night. Also getting 6gr sodium and 3l water daily. I was thinking the florinef was what was causing my headaches to return. I've tried reducing my florinef by a 1/4 dose twice now but my POTS got really bad by the 3rd day into the reduction and I went back up to .2mg. I had been successful for a while narrowing my orthostatic pulse spread down to 8-12 bpm by the evening each day but now over the past few weeks it has widened back out to 20-24 bpm. Don't know how much of my headaches may be due to orthostatic stress. -Dale

I've found 4 square breathing (in for 4sec, hold 4 sec, out for 4 sec, pause 4 sec, repeat) for a ten minute session can really help me with anxiety and grounding myself when my brain gets stuck in a negative thought pattern I can't break out of or am having automatic unwanted thoughts.

Hi All, I am new to this board. I was given a working Dx of POTS in March, though I've been through the common path I've seen here in taking a number of years to get diagnosed. I now believe my triggering event was a TBI (head/neck injury/concussion 5 years ago). Never fully recovered from that and kept progressively getting worse with what I know now are common POTS symptoms. The wheels really fell of in December with multiple near syncope events, several ER visits and hospitalization. My recent really vexing problem has been a return of tension headaches that turn into migraines. I found that taking my previous medication (Fioricet) for these episodes made my POTS much worse. Nights have been awful and I take a cooler of ice packs to my bed with me. Lucky to get 4 hours of broken sleep a night. My PCP has given me Rx of Imitrex (didn't help) and Nabumetone, which helped a little with the tension portion of the headache at the base of my skull but didn't help with the pulsing/pounding in my head. (I've not had good luck with NSAIDS and POTS so far) So it seems with POTS, the common effective headache medications/pain relievers which relax blood vessels and lower blood pressure are all likely out. I was wondering if users here have experience with this and what might be working for you. High to maximum dosing with acetaminophen has been tried and wasn't really effective. Helped a little with the headache in the main part of my head but didn't help at all with the triggering tension headache portion at the base of my skull. Will be looking into botox as that was effective for a while after my TBI. Also worth mentioning, I was having such bad headaches last year I had PRP Lysate injections in my cervical facet joints (advanced arthritis and nerve root compression) along with an interlaminar (T1-C7) injection. This helped immensely for 8 weeks. Now that I've been Dx'd with POTS the doc said we don't want to be doing facet PRP Lysate injections again as many of the autonomic nerves pass through that area and additional treatment may make things worse. In fact the initial treatment may have precipitated a hastened decline into worse POTS. Thanks! -Dale