Information on
Fighting and Beating Orthostatic
Hypotension, NMH, CFS, etc...
Excerpts from a few
emails of mine to some
I have tried to pass my
knowledge to:
Remember these are my opinions from my experiences, I hold no responsibility for the use of this information.
The view from the top of the
mountain is more beautiful after climbing
up from the valley!
Excerpts
Read it thoughtfully. Hope it helps!!!
Some more things that I think are important. Things I’ve learned,
discovered on my own, or thought of. Too bad those at Mayo / JHH don’t
have the wisdom to think of these.-----------------------------
We smile at primitive ignorance while we submit anxiously to the expensive therapeutics of our own day. As Dr. Oliver Wendell Holmes wrote, after a lifetime of healing:
There is nothing men will not do, there is nothing they have not done, to recover their health and save their lives. They have submitted to be half-drowned in water and half-choked with gases, to be buried up to their chins in earth, to be seared with hot irons like galley-slaves, to be crimped with knives like codfish, to have needles thrust into their flesh, and bonfires kindled on their skin, to swallow all sorts of abominations, and to pay for all this as if to be singed and scalded were a costly privilege, as if blisters were a blessing and leeches a luxury.
------------------------------
No lesson seems to be so deeply inculcated by the experience
of life, as that you should never trust in experts.- Lord Salisbury
------------------------
Also, short term solutions need to be avoided in favor of long term ones. The Flies and the Honey Pot
A pot of honey chanced to spill,
Its contents on the window sill,
In many a viscous pool and rill.The flies, attracted by the sweet,
Began so greedily to eat,
And smeared their fragile wings and feet.With many a pull and twitch in vain,
They gasped to get away again,
And died in aromatic pain.Moral
O foolish creatures that destroy
Themselves for transitory joy.
And: You Mustn't Quit
When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest! if you must - but never quit.Life is queer, with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about
When he [you] might have won if he'd [you'd]
stuck it out;
Stick to your task, though the pace seems slow-
You may succeed with one more blow.Success is failure turned inside out-
The silver tint of the clouds of doubt-
And you never can tell how close you are,
It may be near when it seems afar;
So stick to the fight when you're hardest hit-
It's when things seem worst that
YOU MUSTN'T QUIT.
1. Swimming and Yaz Exercises
2. Strengthen the neck muscles
3. Strengthen leg muscles
4. Strengthen stomach
5. Misc. tidbits
1. Swimming and Yaz Exercises. I’ve mentioned these 2 in other emails and I hope you try them (+ continue them). More on me: I currently tell friends, "I’m turning into a fish. If I continue swimming for the next 40 or 50 years, when I die
they won’t know whether to bury me or flush me!” Also, I’ve been able
to stay in touch or get back in touch with some friends I dated before I
got really bad 2 years ago. I’ve told them that one thing good about
this period and the swimming is that when I do get all better I’ll be
built like an olympic swimming. Not yet! I’ll also mention that I
started having one friend over to visit (movies, etc. + I can drive a
car again, so I can drive her home) that I dated in the past.
2. Neck Muscles - I’ve done neck exercises for the past year because I
believe strengthening these muscles is very important for recovery.
(Muscles help blood flow - imagine your left leg with no muscles at all
and think of your normal right leg. In which would the blood flow
better?). I read a little about the giraffe for obvious reasons. One
thing I learned is that the veins leaving the giraffes head help
maintain the blood in its head. I guess they regulate a little the exit
flow and maintain the head blood pressure. (just thought of this -
picture 10 hour glasses filled with sand and picture the sand flowing
out, if the hole in each is made smaller the sand flows out slower -
doesn’t it? - more muscles might slow down/regulate the exit flow
better). (Ever noticed how strong a horses neck muscles are when you
pat it?)
When I was getting worse 2 years ago, as I got dizzier I didn’t do very
much and sat with my head supported most of the time ---- I noticed that
my dress shirts for work were getting looser around the collar and then
later when I was bedridden for a few months my neck visibly got weaker
and smaller. So I started doing 2 neck exercises when I did the Yaz
Exercises. a) I look to the left then I nod yes very slowly as I
bring my head to the right and finish 5 nods by the time my head is
pointing right. (then repeat) This is very non-symptom inducing unlike
dramatic head dropping to the left and then the right that I’ve read
about. b) the best exercise I thought of is the one in which you push
with the left palm heal and then the right palm heal at a few spots on
the hat-line on the head. If 6 o’clock were the back of your head.
Push gently (at the “hat-line”) at the 5 o’clock w/ your right palm and
then immediately after that at 7 o’clock w/ your left palm. Repeat at
3:30 o’clock - 8:30 o’clock, then 2 - 10, then 12:30 - 11:30. Do it
nice and easy, you’re not looking for immediate strengthening.
There is also a picture of the 18 neck muscles (ones you didn’t know you
had!)
To summarize, if you have healthy tone neck muscles I believe it will
help the blood flow up the 4 arteries to the head and the blood will be
better controlled as it leaves. Does this make sense to you? I have
found this to “noticeably” have helped me.
3. Strengthen leg muscles - The greatest distance from the heart is from the tip of the toe to the heart when standing (I’m 6’4”) so this is a great distance for me
(too bad I’m not shorter). So for blood to travel up the leg back to
the heart it is helped by the leg muscles. (ever notice how standing
still can be hell, but moving around I little can help? - that’s the
muscles pumping the blood a little when moving around)(try flexing your
leg muscles a little if you have to stand still)
So in addition to strengthening the legs while swimming (very moderate
to light stress swimming - to prevent symptoms) I do 100 hundred leg
extensions for each leg before I go to bed. I use ankle weights of about 6
lbs I’ll guess. For me this is somewhat easy now, but as for every
exercises I suggest, start out EXTREMELY slow and build up SLOWLY over
months. (I lean back on a huge set-up of 2 3-way pillows and 2 pillows;
and hang my extension-leg over the bed-side)
4. Stomach Muscles - In our 1939 Encyclopedia Britannica, there are 14 huge pages on the Vascular System. In one section they describe how the muscles of the
midsection can act as a belt to keep blood in the upper body. 1939
encyclopedia illustrative example, direct quote: “In tame hutch rabbits,
with large patulous [soft] abdomens, death may follow in from 15 to 20 minutes
if the animals are immobilized in the erect posture, for the circulation
to the brain ceases, and the heart soon becomes empty of blood.” --
SOUND FAMILIAR? -- “If, however, the capacious veins of the abdomen be
confined by an abdominal bandage, no such result occurs. Man is often
naturally provided with an efficient belt, although this is often
rendered toneless by neglect of exercise or gross and indolent living.”
(Aside: I could quote it on how it describes how the body is made up
of veins and valves and that the skeletal muscles keep the blood on the
move when the contract and squeeze the veins.)
There are few good non-stressful ways to strengthen the stomach muscles
(that I can think of), but swimming helps this. Also. sometimes when
I’m finished swimming I tread-water and then extend my legs forward
(toes to the surface) then extend legs backwards (heals nearly stick
out). (then repeat.)
5. Misc. tidbits (may repeat some things from other emails or this
one):
- Blood carries a greater percentage of oxygen when you are in better
cardiovascular shape. (swimming is the only exercise good for
increasing this, in my opinion, because I don’t get hot or break a
sweat - inducing dizziness, etc...)
- Muscle helps pump blood around the body. When a weight lifter picks
up a 500 lb barbell his blood pressure goes well over 200. Obviously
this would induce dizziness in me, but slight flexing a little may help
the blood flow better and quicker (do it so it doesn’t show on your face
- or you will look rather strange). Give it a try.
-Try sitting down in the shower (on stool or floor of shower - maybe get one
of those extension heads you can move like a garden hose) - (+ use cool
water brrrrrrr). Good luck.-I also drink about 3 liters of water a day (between meals only when you won't dilute all your stomach's digestion chemicals).
-I don't try to walk around at all until at least 1 1/2 hours after eating
when blood is no longer diverted to the stomach (as much) for digestion.
-About 1 year ago I started taking Effexor and it quickly enabled me to
have goose-pimples again, sweat again, and not flush in the face all the
time. I take 37.5 mg at about 9 am, 37.5 mg at about 1 pm, and 37.5 mg
at about 6 pm. (not taken for depression - though it is similar to
Prozac, etc. - but one of the side effects of Effexor is increased blood
pressure. [see more about this from Northwestern Univ.- go to the bottom part of that page] - look it up in a drug book or on-line. I don't completely
recommend any "drugs" but it might be worth a shot - start very slowly
with it though- as with any drug - start extremely slowly - maybe 1/4th of what any "doctor" says and then build up.)-Remember that there is no standard dose of Atenolol for people. It is all
trial and error. There comes a point when the negative effects of
Atenolol outweigh the positive effects. At that point you need to cut back
a little. For me it was about 30 mg per day. -Also, it might be wise to be able to take more Atenolol when you need it. (when you plan to more physical activity, emotional times [when trying to visit a friend], higher stress times, etc...
-Also, the half-life of Atenolol is about 4-6 hours so if you take 50 mg at
9 am, by 3 pm you only have 20-25 mg in you, and at 9 pm you only have
about 10 mg in you. (this is just FYI for future reference)
-I would HIGHLY recommend you call around to different cardiologists in
your area (or region) and to find one that treats (many) fainting
patients. Experience with fainting patients will likely enable them to
understand your situation better. I hope. Plus, it is good to find a
doctor who openly admits they don't know everything (i.e. willing to
think about something new <--- very hard to find).
-Some doctors say, "don't think about your case, just take this drug and
it will make you better and if it doesn't we'll try another drug- they
think one is too body conscience if they talk about the things in this
email - but unfortunately (99%) of doctors just aren't wise enough to
understand that those fighting and beating this condition need to be
aware of their bodies so they can realize what helps and hurts them
during their recovery.
-I would also highly recommend wearing graduated compression stockings.
They help the blood return to the heart and keep the heart blood volume
high when standing. Remember, man started on all 4s and standing
upright is somewhat unnatural. The stockings really help me. If I take
one off, I am usually immediately dizzier (when standing). :(
I'm having an operation on my leg to remove the greater saphenous vein (vein
on inside of leg from ankle to groin) to help stop this - I would recommend this to anyone with large varicose veins that pool up to 1 pint of blood or more when standing)
-Yes, low fluids and everyone has lower blood pressure in the morning.
Slightly raising your head and upper body while sleeping can sometimes
help one retain fluids while sleeping. While sleeping gravity forces
the kidneys to release water to the bladder thus reducing your blood
volume (blood pressure) and making you slightly dehydrated.
-NO NO NO NO it does not!!!!!!!! sound crazy that your vision is worse. Modern medical doctors (99%) don't understand anything they didn't study in a book. (they are the ones at fault not you!!!!!!!!!!)
It is quite simple - less blood is getting to your eyes [for me it was
the right eye mostly about a year and a half ago but it has improved
dramatically so it is almost always normal now!!!! :) ] because less
blood is getting to your head because the auto-regulation of blood flow
to your head is slightly off [whether that is due to pooling of blood in
the lower extremities - wear graduated compression stockings while
walking around] or because of slightly off constriction or diolation of
blood vessels in the head. It will get better!!!!
Don't read much from books (for awhile) - that may make it worse.
-I had ear problems too. A year and a half ago - mine are ALL better!!!!!!
I had popping, cracking, some ringing, and people would say I tended to
turned my head to one side to listen better. Less blood to head, therefore less to ears, therefore hearing problems. Very basic. Improve the flow and you will be all better!!!
-The benefit of beta-blockers is that they tend to keep the standing
blood pressure about the same as the sitting and lying blood pressure.
The sitting and lying are reduced by the beta-blockers while the
standing is increased. The exterior blood vessels are constricted
(made smaller) therefore more blood is in the central part of the
circulatory system
-Still very basic stuff -but currently most doctors don't understand (I
am assuming your symptoms - which I have had them all - are caused by
the same things that caused mine - which I believe they
are)---------------> Your heart is not receiving enough blood returned
to it by the body for its next beat - so the heart palpitates or skips
as it pumps a chamber that has a little less than normal amount of blood
in it. As with the above descriptions: improve over time with
swimming, Yaz Exercises in a cool room, walking a little (if you can in
a cool room or during cool weather).
-Eat smallish meals (I eat sitting in a lazy-boy like chair with my feet
up) and don't try to walk around or do anything for a little while after
eating (I usually wait 1 and 1/2 hours) - the blood you need for your
heart to fill correctly and the blood you need in your head for less
dizziness is being used by your stomach and intestines to digest the
food you just ate. (Note: don't you know how most people say they
are tired after a big meal and want to nap - that's for the same reason, blood is digesting their food and is not making it to their head as
well and they feel tired).
-I would recommend Effexor over Zoloft
-"Sometimes I just feel so weak and old." -Beta-blockers can make it worse at times. (even 5 mgs)
-I am into the basic flows of the body. I have read much of those and it
always leads back to the basics. One way I thought to describe my condition that the average Joe or Jane might understand. Imagine a 6 story dorm building at a college. If everyone is taking showers on the lower floors in the morning the water pressure on the sixth floor is very low for showering (like when you stand up and the blood pressure is lower in the head - less blood there). As you sit
down or put your feet up and lean back a little you are creating a
condition more similar to a 2 or 3 story dorm building. If everyone is
showering in this (now a wider but shorter building) dorm the pressure
for showering on the top floor is likely to be much higher in this other
building then in the first one.
-How much experience does your doctor have using Zoloft? Consider
asking him if you can start a little slower and build up to 25 mg after
a few days (or a week or so).
-The doctors don't realize how sensitive patients can be. It is THEIR
fault for not knowing how sensitive one can be, never the patients
fault!!!!! - don't feel guilty about it if you have any sensitivities to
the treatments.
-Zoloft, yes it can cause symptoms quickly. The "doctors" say the drug
takes a week or so to be beneficial, but they don't realize there are
side effects that start off immediately as your body gets used to it (the
hard part is explaining to a "trained" doctor that they are not
"all-knowing" - they don't like patients telling them how to do their
job - in their FIRST year of medical school they are taught how to
always be in control of the patient).
-The salt is a good idea, maybe. I have a bunch of "thermotabs" which
are salt pills, but I am very, very sensitive to salt. Sometimes salt
can induce immediate dizziness. Try it with meals and start very slowly
and build up.
- the salt can make you excitable also. (gave me weird headaches)
-Do you get an amazing adrenaline rush just by standing? I would stand
and go from being calm to very excitable in one second upon standing
-I thought that too about Addison's disease. It is important to learn a
lot but these symptoms can convince you of a few "diagnoses". But go
back to the basics, it is a little bit of a bunch of things.
Don't read too much technical jargon until you think you understand the
basics.
-Yes, that made me excited whenever I did or even thought about my
condition back when I was worse.
-Take medications slowly and slowly build up the amounts. Many may help
but not if they are tried too quickly.
- Strengthening the body over time is the best long-term solution to your condition.
- more added soon (April 6, 1998)
Links
Orthostatic Hypotension
Northwestern University Medical School
Robyn's Neurally Mediated Hypotension Pages (you'll find good links there)
Obscure links:
Paragraph about Orthostatic Intolerance from NASA
Variability of Blood Pressure and Heart Rate - NASA
Simultaneous Cerebrovascular and
Cardiovascular Responses During Presyncope
AJP: Heart and Circulatory Physiology