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Dale H

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  1. Interesting, I might have gotten some bad info about a non-weight bearing tilt table test. I'll check into it some more. Thanks!
  2. 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
  3. 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.
  4. 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
  5. 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.
  6. 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.
  7. 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
  8. 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
  9. 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
  10. 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.
  11. 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
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