kare Posted March 24, 2005 Report Share Posted March 24, 2005 Just wondering- what has ANYONE found that helps with energy. I have MVP syndrome and/ or POTS, developed after 2nd pregnancy 18 years ago.I have tried florinef (no help).... Proamatine (helped for wonderful 3 weeks till my body figured out how to overcome its help), tried low dose of concerta- also helped for about 3 weeks. Now I am taking Strattera (for my ADHD) and effexor..... but neither help my exhaustion.Got it into my head that I wanted to go to PA school...... yeh right,.... I couldn't even handle 3 classes this semester... had to drop 8 AM class... mornings are the worse..... So I am really discouraged. My kids are groing up- 14,16,18 and 21 and we really need me to be able to help with income..... but how when so tired?????iI have BA in psychology from 25 years ago. LAst few years I have taken, biology, anatomy, physiology and micro. I love medical stuff, but what can I do with passion, but no energy to fullfill desires...., sigh..... heard PA school crams 5 years into 2 and sounds very exhausting......So tired of being tired. wired, but tired.Thinking of asking for vasopressin nose spray to retain fluids during nite- anyone try that?Never gave betablockers a fair trial- does anyone think they help with feeling more strength?My heart rate goes up about 30points when I stand- to 110 and stays there- goes up higher sometimes but resting standing pulse is usually there about. My blood pressure drops when stand, usually always somewhat lowish. (but I never faint)Thanks for any and all advice!!!!!!!!!!Karen Quote Link to comment Share on other sites More sharing options...
steph37822 Posted March 24, 2005 Report Share Posted March 24, 2005 oops Quote Link to comment Share on other sites More sharing options...
yogini Posted March 24, 2005 Report Share Posted March 24, 2005 I think what helps me with fatigue is lots of water and salt, taking a multi-vitamin and wearing compression hose. The compression hose would probably help keep up your BP when standing. I have also been trying to exercise lately, and after a few weeks of exercising, I noticed that I had alot more energy. Sometimes I try a little caffeine, but I don't have too much because I can never tell whether it is helping or hurting me. As for the beta blocker, I think by bringing down my HR it helps me to do more too. On days when my heart is beating faster, I definitely have less energy. I think there are some people on the board who take Provigil for energy, so you might want to do a search for that.I understand how it feels to want to do so much and be limited by POTS. It is a total bummer. I hope you find a way to boost your energy. -Rita Quote Link to comment Share on other sites More sharing options...
kare Posted March 24, 2005 Author Report Share Posted March 24, 2005 Thanks Rita and Steph, I appreciate you taking time to give me advice. I had forgotten about the stockings, my mom has them for varicose veins and I borrowed them for awhile and they did seem to help some. I couldn't do the expensive treatments because of our financial situation, but maybe later. God bless Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 24, 2005 Report Share Posted March 24, 2005 Kare, I had problems with the get up and go, and I have been on ritalin for 3 years. It comes in Extended release tablets as well as regular tablets. I would talk with a career counselor or the dept of BVR, which helps in retraining people. Miriam Quote Link to comment Share on other sites More sharing options...
kare Posted March 24, 2005 Author Report Share Posted March 24, 2005 Miriam,I took low dose of concerta for awhile but stopped helping with fatigue after month or so, then just made my sleeping more difficult. (and I felt nervous) Do you find you have to take something for sleep with concerta??? thanks! Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 24, 2005 Report Share Posted March 24, 2005 i think the make up of ritalin is a bit different> what i do is instad od taking EXTENDED RELEASE I TAKE !) MG TAB WHICH IS GOOD GOR ABOUT & HRS>so I WOULD TRY TAKING THATSO IT WOULDN"T INTERFERE WITH SLEEPIT TAKES SOME ADJUSTING TO GET THE TIMING RIGHT<BUT IT WORKS>ALSO IT TOOK ME @) YEARS TO FINISH MY BACHELORS DEGREE THAT WAS WITH @ KIDS HUSBANDS CAREER POTS IT CAN BE DONE> MIRIAM Quote Link to comment Share on other sites More sharing options...
kare Posted March 25, 2005 Author Report Share Posted March 25, 2005 i think the make up of ritalin is a bit different>Â what i do is instad od taking EXTENDED RELEASE I TAKE !) MG TAB WHICH IS GOOD GOR ABOUT & HRS>so I WOULD TRY TAKING THATSO IT WOULDN"T INTERFERE WITH SLEEPIT TAKES SOME ADJUSTING TO GET THE TIMING RIGHT<BUT IT WORKS>ALSO IT TOOK ME @) YEARS TO FINISH MY BACHELORS DEGREE THAT WAS WITH @ KIDS HUSBANDS CAREER POTS IT CAN BE DONE>Â MIRIAM<{POST_SNAPBACK}>miriam, is it just called ritalin and what milligram strength do you take? Thanks for the info. Whats your degree in? Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 25, 2005 Report Share Posted March 25, 2005 wow kare! 14,16,18 and 21? and working and pots? Try all that was suggested here and I also hope you can manage a good old fashioned NAP, maybe once in awhile! take care, tearose Quote Link to comment Share on other sites More sharing options...
briarrose Posted March 25, 2005 Report Share Posted March 25, 2005 What helps with fatigue? For me it was Epogen injections, IV Iron and adding vitamins to my diet every few days. I can't take vitamins every day because they are too hard on my stomach. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 25, 2005 Report Share Posted March 25, 2005 Kare, I take either 20mgSRfor a full day or 10 mg 1-2xday. You really need to play with it to see what works best. My degree is in Exercise physiology,health and dance. I was the fitness director at the largest club in Wi for 9 years. Then I no longer was me. And then went to seminary. Body,Mind and Spirit always!!!! Miriam Quote Link to comment Share on other sites More sharing options...
KathyP Posted March 25, 2005 Report Share Posted March 25, 2005 Hi kare;With 4 kids, working and dealing with POTS, YOU GO GIRL!! It is understandable that you would be so tired and fatigued. My first post, when I found this site, asked the question about menopause and dysautonomia. I am in my late 30's, had a hysterectomy and have POTs. I have 2 kids, 12 and 6. I sometimes have a very hard time keeping up and I don't work. I don't know what your age is, but I do know that when estrogen levels go down so does the serotonin level. This throws your system way out of balance and can make you very tired and fatigued. If you have health insurance, you may want your doctor to run a hormone level test. If you are pre-menopausal or menopausal this might help. Estrogen hormone replacement, at a very low dose might be helpful and is less expensive. I looked into some of the great advice I found here, tried some different things and I am feeling much better. I agree with Rita, lots of water, extra salt and compression hose help greatly.Hang in there!KathyP Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 26, 2005 Report Share Posted March 26, 2005 The only thing that helps me is lying down.Ernie Quote Link to comment Share on other sites More sharing options...
calypso Posted March 26, 2005 Report Share Posted March 26, 2005 The beta blocker might not be a good idea. I have major fatigue as a side effect from it, although it seemed to get a little better after a couple of months.You might try doing a search on this site for Provigil. It's a drug that's been taken by a few here for fatigue. Amy Quote Link to comment Share on other sites More sharing options...
Kite#7 Posted March 28, 2005 Report Share Posted March 28, 2005 Exercise, a convertible on a beautiful sunny day THAT I CAN DRIVE!!!... for more please see long winded diatribe in vitamins /minerals as i'm runnin' ouuta steam for today. Happy EAster Kite#7 Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 28, 2005 Report Share Posted March 28, 2005 ON the bweach can I come Too?????Miriam Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 30, 2005 Report Share Posted March 30, 2005 salt and licorice tea - but the later gives me migraines every day for a week... Quote Link to comment Share on other sites More sharing options...
kare Posted April 6, 2005 Author Report Share Posted April 6, 2005 thnaks for all the advice. I am not working,(just taking 2 classes).. someone misread my note. I have great kids that do alot.(and my house stays fairly messy..... MY first degree- from 25 years ago is in psychology. I would LOVE to be able to help fellow sufferers and get PA degree...... but I heard that they try to cram 5 years into 2. My AM"S are the worse.... if I could get my degree spread out over 5-6 years (afternoon, evenings)I could probably do it. I LOVE medical stuff and have some aptitude for it..... sigh, thanks for advice to go see carreer counselor......If I wasn't so wiped I'd go- ha Quote Link to comment Share on other sites More sharing options...
Ling Posted April 6, 2005 Report Share Posted April 6, 2005 For me my heart medication is a lifesaver. I am presently off my heart medication in the attempt to fall pregnant. I never knew how lucky I was before I left it. My beta-blocker definitely helps with exhaustion not to mention everything else. I was taking 160 mg Inderal and dream of the day I can take it again. Give it a try I will definitely never be with out my heart medication again.Well done on the lifestyle you living. What an example to all of us! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted April 6, 2005 Report Share Posted April 6, 2005 My doctor tried provigil, but it gave me such a headache, all I wanted to do was lie down and go to sleep so I could forget about it. Nothing has helped my exhaustion. I'm now taking 1-2 naps a day and am still ready for bed by 10 pm. So guess I can't help. Guess I am making up for working nights for 10 years when my kds were little. morgan Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted April 7, 2005 Report Share Posted April 7, 2005 Energy??? I think I have forgotten what that is. On the front end of this - in the days when I kept telling myself there couldn't possibly be anything wrong - I kept pushing myself. I was getting up every day at 4:30am to walk 2 miles. I had been told that exercise would give me energy. Then I went to work for 10-12 hours. Then 4 nights a week I went to school until 9pm. When I started having what was (to me) "unusual fatigue" I was told I had a virus and would be well in 10 days. That was 3 years ago. I worked myself to the point that I spent 3 months in bed. One of my friends had to come over and bathe me; my hubby had to take me to the bathroom and back. A tiny dose of Florineff made me gain 16 pounds in 4 days. A tiny dose of Proamatine sent my BP to 280/210. Then a pacemaker didn't help. I think that the only way we can even begin to be able to function is to get LOTS of rest. Quote Link to comment Share on other sites More sharing options...
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