Jump to content

low blood volume


Radha
 Share

Recommended Posts

Sorry to hear you're feeling so weak. You may want to review the list of what helps by clicking on this link..

potsplace.org

In particular, you may want to check out what it says about Florinef, licorice root, saline, butcher's broom and compression hose. I had success with licorice root, salt and fluids. I haven't tried anything else yet. Hope you find something that works for you soon. :D

Link to comment
Share on other sites

I just started wearing compression hose a couple of weeks ago, and it I think it has been helping. (Actually, if you are interested in trying them, brightlifedirect.com is having a big sale right now) The compression hose is mostly to stop pooling in the legs when sitting and standing. I think it is less helpful when lying down.

Also, how much salt are you having/day?

Florinef is the drug that's most commonly used to increase blood volume for POTS patients. But what works for you really depends on your particular symptoms. From your recent posts, it sounds like you have some other health issues in addition to the low blood volume which are probably contributing to your weakness. I hope you feel well enough to travel to a dr. soon.

Best wishes.

Link to comment
Share on other sites

i eat more than the 10 grams of salt recommended, and i havent gotten the hose because i cant walk or stand at all, i can sit up but keep legs propped up all day, coz hanging them down just makes my feet purple and veins bulge, i did try licorice while ago but didnt help, maybe will try again and havent tried florinef coz i already have bad headaches, thanks for all your input,

radha

Link to comment
Share on other sites

  • 2 weeks later...

You might want to read this article. It was written based on the work of Dr. Streeten. If you're not aware he was one of the first great POTS doctors who really believed our symptoms and pursued their causes. He has since past away, but he was a huge part in where we are today with POTS and Dysautonomia!

http://home.tampabay.rr.com/lymecfs/hypovolemia.htm

I have struggled with hypovolemia, low blood pressure and of course all the other POTS symptoms for a few years now. Since I started Epogen injections a year ago and IV Iron about 9 months ago, I've greatly improved. The Epogen, IV Iron, Florinef and beta blocker have all increased my way of life. I also take a few other helpful medications Neurontin, IV Saline when I'm in a crisis, a few other drugs and the help and support of my friends, family and this forum have been the turning point for me.

Link to comment
Share on other sites

Radha,

I just asked in another topic how you know you have low blood volume (didn't get the answer yet, so maybe you can help ,me). Is it something that can be tested? I do know that since I'm wearing compressionstockings (? now wear the thigh high ones, but will change to the hose, as my neuro prescribed) and they're helping me very much in standing. I feel my legs are very light as I wear them and want to walk (it's a pity the rest of my body doesn't want to cooperate :P ) but I'm glad the standing is better so I can do the dishes etc. standing, since I get a lot of pain in neck and shoulders when I try to do those things while seated. I would really recommend you to wear the stockings or hose because it might work for you. Good luck,

Corina

Link to comment
Share on other sites

Rita--try ordering the hose online so you don't have to go shopping! I've been buying from AmesWalker.com (thanks to the suggestions of many here) and their service is fast and reliable. They carry many brands--if you're not sure what to get, I highly recommend Mediven brand (Elegance style) 30-40 compression thigh high. I'm 5'7" and typically 139 - 143 lbs ... they fit great and are amazingly comfortable. (At my height and weight, other brands didn't fit/too tight or short.) But ask around; others who match your personal/physical profile can help you choose.

Best,

Merrill

Link to comment
Share on other sites

Radha,

Perhaps you've posted this before but I just read how you are presently unable to stand or walk. This is how my daughter Nicole has been for a while now- except for quick bathroom trips. She is 28 and has so many talents gifts going unused and although she is brave she has many difficult times wrapping her brain around the fact that this has happened to her (Zoloft is beginning to help with this). Having witnessed what my own daughter is going through I can empathize with you as to how difficult your own situation is.

Excused me if you have already addressed this- but I was wondering when were you last able to get around okay- upright and such? How long have you been laying down?

Nicole has hypovolemia- presently she has a relentless case of it. It was last May that she crashed and was climbing out of it and was even able to go for quick rides to the store and back but then she crashed to 6 levels below the basement on Sept. 15th. Just yesterday we ordered compression hose for her because of all the recommendations on this website. Her bp drops when she gets up for bathroom trips. Hopefully this will help her. Also since the Sept. 15th crash she has gradually increased her salt intake to @ 12-15 gms and loads with water. You'd think she's be bloated beyone belief but she is not at all bloated in the least bit. However when she first stand up her heart rate no longer shoots to 150 but rises to around 95. So that is some progress- and maybe very well due to the salt and fluid loading. She has been on 4 Florinef and they no longer seem to work. She began taking licorice two days ago. Today she took 2 capsules = 3000mg (I think). Also yesterday the head of her bed was raised 5 inches and that helped to reduce her supine blood pressure immediately from 150/90 to 130/76.

At night Nicole's symptoms decrease a bit as is the case it seems with many POTS patients. Mornings are tough. But here's a trick she learned from using info from this website. At night she eats a good amount of food right before going to bed and drinks lots of salt water with it (many seems to say that they see better effects of salt when taken with food). Sometimes she cannot do the bedtime food/salt thing because she might be nauseous and cannot eat. But she has noticed when she does do the food/salt thing at bedtime the next morning is apt to be more tolerable.

I will let you know if there are improvements in Nicole as climbs up on the licorice dose.

I am so sorry that things have been so rough for you and I will keep good thoughts going for you. (By the way I notice you ask a lot of good questions). Oh yes- what about a doctor? How is your doc? Do you have one who is POTS literate?

Best Wishes,

Beverly

Link to comment
Share on other sites

Radha,

Sorry (I''m very worn out) I just reread and saw that you take 10 gms of salt already. And excuse me if I missed this too ( my own brain is quite fried) but what about fluid intake to go with the salt - how much do you drink per day? and excuse me again- I also see that you've tried the licorice. Sorry I missed that too- But now that we are on the subject again- just curious how much did you take and for how long did you try it?

Take care,

Beverly

Link to comment
Share on other sites

thanks to all of you for caring and replying, i tried the licorice awhile ago, kept increasing but no relief, it was a powder, maybe will try again, can anyone recommend a good effective brand? and i found out i had low blood volume by having the test done by nuclear medicine few years back, and i did try the epogen shots, but without the IV iron, i dont think my doc will let me get IV anything at home, she has some knowledge about POTS but is terrilble about getting back to me about anything, never replies, i call and call, but nothing, very frustrated, tried to find another doc in area, but few taking new patients wont come to my home, and i havent walked since 96, i was able to go out little in wheelchair then, but now cant leave home at all, and sit up in bed or on sofa with legs elevated, i didnt try hose coz i cant stand at all, i drink lot of water and eat ton of salt, want to try so many things, wish dr. grubb would do a phone consult and prescribe adderral, or something, i cant eat, cant sleep, always in pain, wondering if i may have lupus, or psoriasis coz of these flaky rashes on face, and well, i just dont know........i feel so grateful to have all of you, and i learn so much from all you,

wishing you all a good nite,

radha

Link to comment
Share on other sites

Radha,

I'm very sorry you are doing bad. I know I can't, but surely would like to sent you all of my doctors and physical therapist 'cause eventhough dysautonomia is something most of them didn't hear about before they are always there to help me out and even come to my home if necessary. Is there any possibility you can find at least one doctor to help you out? I'm sending good thoughts to you and hope you will feel a little better soon.

Corina

Link to comment
Share on other sites

Radha, So sorry about your bad days which are so frequent. Since 1996, have you been run through the gamet of tests; been worked up at MAYO; and systematically tried various medications--not only Florinef but also beta blockers, clonidine, midodrine, neurontin, zoloft/celexa, ritalin/adderal, and Octreotide--just to name a few. It seems to be trial and error as to which medications work; which don't; and which work better in combination with others.

I feel so bad that you are not able to leave the house. If there was only some way that you could travel to the Mayo even if by air ambulance, so that you can possible get some relief.

By the way--concerning compression hose--if your doctor writes a prescription for the hose, there is the possibility that your health insurance might. I have BC and they cover 6 pair a year. That is really great because the hose that I wear are about $150 a pair.

Also have you all tried some more simple "assists." For example, drinking V8 juice first thing in the morning; self-infusions in which you drink ice water; salt tablets; ramen noodle mix (very high in sodium).

Don't give up! You need to find a way to travel to a medical appointment. Perhaps a trip to the Mayo with inpatient testing might be a solution. Are you able to sit up in a wheelchair long enough to go to a doctor? How about an ambulance service that can take you to a doctor/hospital for consultation?

Just some thoughts. Your fellow POTs people are worried about you!

Link to comment
Share on other sites

Radha,

I read through all your posts since you joined. I really feel for you because my daughter is severely affected and has many parallel problems to you. Also she is just one year older than you. I feel like can easily imagine what your day is like.

I noticed that you have not tried florinef because you have severe headaches. You may have headaches because of the reduced blood flow to your brain/ blood volume problem. It is possible that florinef might not increase your headaches but rather reduce them if it worked for you, i.e. increased your blood volume.

Florinef is what got my daughter functional again initially. She took one .1 mg pill and was upright within 2 days after laying down for over 3 months. It was like magic. It corrected her blood volume issues to a great degree. She wasn't perfect but she was 75% her old self- and up and about. Yet it is my opinion that she got bad advice about the florinef as she was advised that since her "condition" would probably go away she should make it a point to taper off the florinef (she had not yet been diagnosed with POTS but yet a doc recognized that she had a need for florinef by common sense and clinical evidence).

Having gone off the florinef (or at least way down) she relapsed and then needed to climb slowly to 6 florinef to gain any relief. She tapered off that huge amount and now it isn't working at all. If we could do it again I would have wished her to initiallly remain on the florinef forever at that .1 mg dose- just in case the tapering off is what caused it to become so ineffective. Of course that is guesswork but still one has to wonder.

Anyway - long story short- you seem to have similar issues to my daughter- parallel in many ways- I just wonder if you are indeed a good candidate for florinef and that maybe it would reverse your headaches and get you on your feet if you are a good responder and thus if it increased your blood volume. Initially when she took the .1 mg Nicole started at a tiny dose and titrated up. If you wanted to try it you could start at the tiniest dose - the very tiniest - like a scraping of the pill and titrate up. It is something to think about at least.

Meanwhile, I will find out what brand of Licorice Nicole uses in case you wish to try it again. I know she uses capsules. She is a purist and uses supplements with the least amount of additives. Also I will let you know if it helps her over the next couple of weeks. She is completely bedridden and couldn't even sit up in a wheelchair. She was on 2 capsules yesterday (@ 3000 mgs.) and I think plans to increase it.

Take care,

Beverly

Link to comment
Share on other sites

Radha,

I feel terrible that you are suffering and haven't been able to find a good doctor. Your condition may have changed since 1996, so it would be good for you to get to a doctor, hospital or clinic and get a current evaluation. I can see why a doctor would be reluctant to prescribe anything by phone (for liability reasons). Where do you live? Maybe one of us lives in your area and could give you a recommendation or get you in to see a doctor. (I personally don't have a good doctor, but maybe someone else can help!) There are also charitable organizations that could help with transportation.

You could also try calling your local Congressman or Senator for help. I know it sounds silly, but I interned for a Congressman one summer, and we used to get calls from people seeking help with health problems. My parents were about to do this when I first got sick and noone knew what was going on, but fortunately I was finally able to get a diagnosis.

Get well soon!

Link to comment
Share on other sites

i thank you all enough for your kindness and concern, i live in elmira, N.Y. its upstate, if i can get my doctor to respond one of these days, i will consider the florinef, i hestitate since i have heard so many horror stories about it, how bad it is getting off it, and side effects, but will keep in mind and will try licorice again, thanks so so so so much for being there!, lots of love to all of you!

radha

Link to comment
Share on other sites

Radha,

I checked today and the brand Nicole uses is Nature's Way. I am so glad you asked about licorice because when we read the back of her bottle we realized that she was only taking 2 capsules (450 mgs each) or 900mgs per day and the recommended dose is 3 capsules 3x per day. Somehow we both mistakenly thought she was already taking 3000 mgs. I wonder if this is a recommened dose for something like a cough or a stomach ache/ heartburn. And perhaps someone with severe hypovolemia needs way more. If anyone on this forum knows I'd love to know the answer. Meanwhile I plan to research licorice as well to see what I can come up with.

Just for the sake of putting together information- when you took licorice do you remember how much you took and for how long? And were you doing the high salt and fluid loading at the time?

Best Wishes

Beverly

Link to comment
Share on other sites

I just asked in another topic how you know you have low blood volume (didn't get the answer yet, so maybe you can help ,me). Is it something that can be tested?

Corina

My doctor wanted to test me for it. I forgot what the test is called though. Anyway, it hasn't been easy finding a place that will do it. He is investigating now to see if he can get a place for me to get it tested.

Friday

Link to comment
Share on other sites

Guest tearose

I think my doc took blood tests and figured out blood volume from those results. It was a combination of blood count and hydration levels. I can ask my doc tomorrow and let you know.

tearose

Link to comment
Share on other sites

the isotope (nuclear) test that radha mentions is probably more acurate. but there is a 24 hour urine sodium test which can also be used to test blood volume. i had this test at the suggestion of mayo.

from potsplace.com:

Some patients may be given a 24-hour urinary sodium test. This test is useful in determining if one's plasma volume is normal (Low, 2000). A study of neurocardiogenic patients noted that those with a urinary sodium excretion <170 mmol/24 hrs. were more likely to have reduced plasma volume (El-Sayed & Hainsworth, 1996). These patients responded well to salt loading.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...