I was sleeping on a few pillows to try to prop my head up, but as they'd sink down in the night I'd feel like I was suffocating. I got a memory foam pillow to bolster the stack of regular pillows, so my head is at least 6 inches higher than the rest of me through the night. I think it feels better. With OI it seems best to reduce the radical changes in body angle throughout the day and night. So never lying completely flat at night and finding ways to recline when awake would lessen the strain of changing between angles. I'm of mixed opinion about how much salt/potassium to eat. Some dulse and sea salt broth in the morning makes me feel better, as does salt throughout the day. If I take salt in the evening sometimes I get a headache lying down at night. I haven't found a way yet to endure long stretches of standing, or of being able to concentrate for several hours sitting up like I used to.
Orthostatic intolerance: raise bed head or foot at night?
- Thread starter Sasha
- Start date
C
Cecil
Guest
I was recently diagnosed with POTS by a neurologist at the Mayo Clinic. I started having symptoms in 2003, including intolerance to exercise, digestion problems, and then tachycardia. In 2004, I saw a gastroenterologist, endocrinologist, an internist, and finally a cardiologist gave me the diagnosis of inappropriate sinus tachycardia. Since then, my symptoms have continued to get worse. Last week, I re-started my quest for answers by seeing a cardiologist, who referred me to an electrophysiologist, and then a neurologist that specializes in autonomic function, or in this case dysfunction. I underwent a many tests, including the tilt table test and the autonomic test. A neurologist gave me the diagnosis of POTS. He recommended I tilt the head of my bed 4"-6". He recommended for ME, a diet of 10 grams of salt. Every one is different, and will need to seek the advice of their doctor. Consuming 10 grams of salt can be dangerous for some people, it's not for everyone. After my neurologist told me about the salt recommendation, I consulted my cardiologist to ask about the safety of this recommendation. He agreed it would be safe for me. He advised I buy a blood pressure cuff for home and gave me parameters about where my blood pressure should be. I recommend you seek the Mayo Clinic for more information. I went home with an actual brochure on POTS. Something I didn't expect, as I thought the doctors would tell me this was all in my head. My cardiologist at home told me that I just needed to loose weight and exercise more. Advice I followed, but still grew more symptomatic.
ramakentesh
Senior Member
- Messages
- 534
Ben levine and co believe that all forms of orthostatic intolerance can be exercised away - and this comes back to the mistaken belief that is is a result of deconditioning.
What seems to happen quite often with POTS is that patients tend to support only the views of their particular specialists when opinions are still very diverse as to the primary etiology of POTS (and it is a syndrome so has diverse causes).
Some POTS patients exhibit excessive pooling in various areas (neuropathic) whereas others exhibit either overall or orthostatic relative hypovolumia with inappropriately low renin responses, others show signs of parasympathetic withdrawal and cerebral autoregulatory defects on orthostatic stress, and finally others have sympathetic excess - overall vasoconstriction of arteries that starves venous reservoirs of blood and constributser to reduced stroke volume through elevated angiotensin II and NET deficiency.
At this stage - most doctors treating POTS and OI are basing their treatments on guesswork more than science. Studies are usually hampered by small cohorts and are often conflicting.
What helps for one patients may make another worse - and as there is an evolving understanding of teh diverse causes of POTS it may be that there are many causes and that POTS is a final pathway to all of these.
What seems to happen quite often with POTS is that patients tend to support only the views of their particular specialists when opinions are still very diverse as to the primary etiology of POTS (and it is a syndrome so has diverse causes).
Some POTS patients exhibit excessive pooling in various areas (neuropathic) whereas others exhibit either overall or orthostatic relative hypovolumia with inappropriately low renin responses, others show signs of parasympathetic withdrawal and cerebral autoregulatory defects on orthostatic stress, and finally others have sympathetic excess - overall vasoconstriction of arteries that starves venous reservoirs of blood and constributser to reduced stroke volume through elevated angiotensin II and NET deficiency.
At this stage - most doctors treating POTS and OI are basing their treatments on guesswork more than science. Studies are usually hampered by small cohorts and are often conflicting.
What helps for one patients may make another worse - and as there is an evolving understanding of teh diverse causes of POTS it may be that there are many causes and that POTS is a final pathway to all of these.
AndrewKFletcher
Inclined Bed Therapy (IBT)
- Messages
- 1
- Location
- Paignton in the United Kingdom
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