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Advice On Meds...


Mike83IRL
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Advice needed,if anyone can help,have been suffering greatly with low B.P. particularly in the last few months,..unfortunate because I was finally getting on top of my other symptoms,...my Doc is calling it straight Hypo,but I am unsure,I do not get dizzy spells when standing and frankly have to spend as much of the day as possible on my feet just to feel anyway normal.

The real problem occurs when I am sitting or lying down for more than 20 mins my B.P. starts to drop to about 110/55 and will continue to about 95/35 if I dont get up and move around,...any advice?This is driving me crazy,I can't get a moments peace,and I cannot sleep until I am exhausted,..has anyone had similar issues?>,Midodrine is being discussed,..any other possibilities?...even any day to day lifestyle tips?I'm desperate :)

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I'm not sure why you have normal blood pressure while standing up and low pressure with sitting or lying down. It takes more blood pressure to stand up and move around than it does to sit or lie down. I have very low blood pressure. I rarely have a systolic above 100 and live mostly in the 80 systolic range. Midodrine is my best friend - it makes such a tremendous difference in how I feel - I have learned to recognize the symptoms of dropping blood pressure - At the first hint of weakness, confusion, or difficulty speaking, I do something to elevate my pressure: drink a lot of fluids, take midodrine, prop up my feet, or lower my head.

I suspect that the inactivity of sitting down or lying down for you causes your blood to pool and you don't have adequate circulation. At least when you are up and moving around, your heart rate increases and your blood vessels are constricting to allow your BP to stay elevated. I don't think you can take midodrine and lie down - it causes the blood pressure to rebound and it can spike too high.

Do you sleep in the "dysautonomia" position? - Head elevated about 30-degrees, pillows under knees and both arms? - this promotes the best circulation and discourages pooling of the blood. When you sit, do you elevate your legs or do you hang them down which encourages blood to pool? - You may do better with compression garments - are you adequately hydrated? - I know this is frustrating - anytime you can't keep your BP up, it becomes a huge problem - especially when you have responsibilities and simply can't just drop out of life!

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Are you on any meds now?

Anything that may be lowering your BP naturally: foods, vitamins, herbs?

MIDODRINE can be taken laying down only in certain pts. I was one, there is a certain percentage of pts who need this.

Must be approved by doctor.

Have you had a holter monitor done to look at this?

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Thanks for the info everyone,to answer some questions,...

...as far as I know my heart rate is in the normal range,60/70's up to high 90s/100s when i stand

...I have tried to eliminate foods high in potassium,OJ,bananas etc.

...i try sit with legs raised,but have not tried to raise limbs in bed,will experiment with this i think...

...Bella holter is normal other than BP,doctor said she was impressed I could stay conscious with such low numbers,am on no meds as of yet because I suspect none of my doctors feel confident enough,all seem to be waiting for someone else to take the responsibility.(Midodrine is all I have heard discussed)

...Soskis I agree that the mechanism at work must be related to my circulation,the only thing that has helped me is trying to swim a few meters in a pool 1/2 per week,..and herbs such as hawthorn and butchers broom,which are natural vasoconstrictors.

when this all began 3 years ago my main symptom was severe difficulty breathing after collapsing in the gym,this never fully went away but I was beginning to control its severity,for me it has always seemed than my symptoms(dyspnea,hypotenson,Tinnitus,Tremors,Brainfog,claudication) are a result of many compounded back and neck injuries,as I used to be a boxer(not a very good one!),doctors in Ireland do not recognize Dysautonomia as an illness but will only classify the symptoms(OH,POTS,etc.) so it is hard to get useful info.

I do not understand how back/neck injuries could cause all this but that is what my body is telling me since day one,..has anyone had similar experiences?also can anyone clarify the differences between Mido and Flurinef?,uses,side effects,mechanisms?

Sorry for being so long winded :) ,thank you all so much for all the interest and guidance.

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I don't know about midodrine so hopefully someone will chime in on that. Florinef is a mineral corticosteroid. It helps the body retain salt and therefore retain fluid which helps increase blood volume thereby raising your BP. (Nice run on sentence.) It takes several weeks to start feeling the benefits of florinef and you need to start at a very low dose and stay there for a few weeks to see how it goes. I am a migraine sufferer and did great on .05 mg but when we tried to increase to .1 mg, I got a crushing migraine (typical reaction to too much florinef), so I had to drop back down to the lower dose. The up side of florinef is that it doesn't stay in your system very long so if you have any adverse side effects they stop quickly with either dosage adjustment or discontinuation. The bad side is if you are on it for a while, you need to wean off of it to avoid adrenal crisis.

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Mike,

Have you tried when sitting to drink 16 oz of water fast. You could take a salt tab with it or you could add sea salt to the water. I preferred that to the florinef and the miodrine. They both made my migraines

worse. I'm wondering if your not pushing enough water in general. I would keep searching low blood pressure laying and sitting on the internet for more answers. Did you have a tilt table test? Keep us posted Mike and I wish you the very best... : )

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I also find fish oil that I have to take drops mine.

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Here's a few things garlic, onions, olives, hawthorn, alcohol ( too much will raise ), turmeric,

ginger, Passion flower, mayflower, stevia, dark chocolate, potatoes, soybeans, skullcap, magnesium, coQ10, potassium, cardamon and there are more ... Just look online right now my dog has to go out. Hope this helps. : )

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Sorry Issie,meant to say horse chestnut, not Hawthorne.

Okay, too bad ---that might would have been your answer.

Have you had MRI of your head and neck and determined that there are no structural issues especially at the brain stem area? Some are finding Chiari and with the blows to the head - if you already had a cerebral tonsil drop - it could have caused it to be worse. There are some people that have noticed that they have POTS after an accident. So, it could be from a blow to the head and something causing issues there. Some of us have spinal instability and that can contribute to issues.

There is a girl in Ireland that has a website and I wonder if there are some doctors she might could point you to there. I know Ireland is spread out - but, it's not as big as here. You can drive without too many issues to maybe get to a doctor that is more of a specialist. (I loved my visit to Ireland. Drove around the whole Southern area. We didn't go to the northern part. Our friends wouldn't let us girls drive up there by ourselves with the unrest that was happening at the time.) Her website is something like the Fainting Goat or something to do with Dysautonomia. She used to be here at DINET for awhile - but, I haven't seen her here in awhile.

As for sleep and your blood pressure dropping. Mine drops with lying down too. I have to sleep semi reclined with lots of pillows under me. I can not sleep lying down. Have you tried that? I prop pillows under arms and under my knees too. My hubby calls it my cocoon. But, it's the only way I can sleep. Have you had your O2 checked and maybe had a sleep study to make sure you are getting enough oxygen at night and don't have apnea?

Issie

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