orthostatic hypotension

Discussion in 'Fibromyalgia Main Forum' started by KMD90603, May 13, 2006.

  1. KMD90603

    KMD90603 New Member

    Do alot of people with CFS have this? The funny thing is, I've only ever had it happen occasionally. However, the last few days, every time I stand up I get lightheaded and have to lean against the wall for a bit. My vision goes dark and I feel like I will fall. I'm eating the same as normal, I'm drinking as usual...so I know I'm not dehydrated. I'm not on any new meds. I'm frustrated because I feel like my symptoms are getting worse. I had another low-grade fever last night. I usually get them at least 2 to 3 times a week. Last night it was 99.4, but I felt like it was 104. My body temperature is normally in the 97 range, so as soon as it hits 99 I feel it in my muscles and joints, and I get that feeling where it hurts to move your eyes.

    Anyway, I went to the doctor yesterday to get a slip for thyroid bloodwork, and I did tell him about these episodes of lightheadedness. He took my blood pressure, only sitting though, and said it was good. Lately, my blood pressure's been all over the place. The other day it was high...138/90. It wasn't that high, but I'm only 24 years old, and my BP is normally alot lower. Then, a couple days before that at the infectious disease doctor, my BP was 100/60.

    Should I insist that my doctor do orthostatic BP's on me? Or will it really make a difference? I just don't want to have to waste another $15 copay for him to say it's nothing.

    Gentle hugs,
    Kim (sorry, I rambled again)
  2. mrstyedawg

    mrstyedawg Member

    I have CFS and I too have orthostatic hypotension. It does not show up with just a regular bp check. I had the tilt table test done at John Hopkins. This is where they diagnosed my OH. It is a very hard illness to treat. There does seem to be a lot of CFS sufferers with this problem.

    My doctor at home also diagnosed me with OH. His testing was much simpler than the John Hopkins tilt test. The tilt table test makes you very sick, it brings out your symptoms.

    There is an easy way to test for this just by taking your blood pressure at different times, after standing for a few minutes, and lying down for a few. Everytime I would go to the doctor and they would take my blood pressure it would be normal. But they were not checking me for OH they were just doing the routine BP check. I would definitely get this checked.

    [This Message was Edited on 05/13/2006]
  3. Pianowoman

    Pianowoman New Member

    I get this too and it seems to wax and wane. When I told my Naturopath about it, she said it was adrenal problems. I'm on an adrenal supp. and it does help. I still can't stand for too long, though.

  4. Hope4Sofia

    Hope4Sofia New Member

    I've gotten it for years. It is a bad feeling. My body kind of tingles all over when it happens. I go dark also and my tongue feels numb.

    I wish I knew how to stop it.

    I also have a lot of trouble with reactive hypoglycemia and I have always felt the two conditions are related.

    I try to manage the RH with diet but it is very difficult to control.

    My primary care doc referred me to an endocrinologist for more testing. I'll let you know if they find anything related to this. Maybe we can help eachother.


  5. lucky

    lucky New Member

    My CFS doctor was the one who found out that I have orthostatic hypotension with CFS. However, what I found strange is that he did not tell me how it can be treated, except with one drug (I forgot the name) which has a lot of side effects and he did not want to prescribe it. What other alternatives has anybody tried? I get terribly dizzy as well at times, but I believe the reason for this is the poor blood circulation in the brain.

    Take care, Lucky
  6. findmind

    findmind New Member

    I used to have the same problem, almost fainting every time I stood up or got out of bed. I started eating pretzels as my snack in evening, about 30 thin stick pretzels. The helped me retain my BP and I went from 90/50s to 124/80 within a few months.

    There is also glycerizzed licorice (not the regular candy type) that helps this.

    Yes, it is a circulation problem: when many of us stand up, instead of pumping blood faster, ours can slow down, causing the Dr. Cheney problem of low blood filling of the lower chamber of the heart. (Search Dr. Cheney here on this site)

    A good a.m. protein drink might help you too...look up Stormyskye's Shake on this site for a good one, lots of people have benefitted from it.

    Take good care of you....
  7. Jasmine

    Jasmine New Member

    I have low blood pressure from CFS and I take seasalt and drink lots of water several times a day and now my blood pressure is normal again. I also take Dr. Baschetti's licorice powder every morning. I'm better but I still can't stand up for very long.

    Love, Jasmine
  8. connieaag

    connieaag New Member

    My daughter's doc told her to increase her salt in take to help with the symptoms. Also eating chicken soup -- high salt content -- was prescribed.
  9. 69mach1

    69mach1 New Member

    beiong on birth control pills can raise it also...i was taken off from mine before i got pregnant w/my son...and had to come in every month for 5 months...bp went down...

    i was not over weigth at all not even close...never liked salt..

    never salted any foods...

    anyways that could be a possiblity also...

  10. Hope4Sofia

    Hope4Sofia New Member

    I recently did the tilt table test and was diagnosed with definite orthostatic hypotension.

    With this and other testing my neurologist diagnosed me with dysautonomia - mine is generalized or pure autonomic failure.

    Mine also appears to be hereditary as my aunt has CFS and brother and cousins are highly symptomatic for OI, etc.

    I have a great deal of fatigue but also have significant neuropathic pain along with GI issues and more. (As many of us do.)

    This is important to get diagnosed as they handle treatment differently than they do with CFS or FMS. I was preveiously diagnosed with FMS and was not taken seriously until now.

    All of a sudden I have a cardiologist, GI specialist, and Gynocologist at my disposal thanks to my neurologist.

    Neurologists are typically the ones to diagnose this condition as many DR's aren't familiar with it.

    I highly suggest going the extra step to get it diagnosed - but do it right. Go through a good neurologist if you can. A tilt table test is one of the best ways to find it - although it is a miserable test. I've been complaining about it for 16 years and have progressively gotten worse so be persistant!

    This is a serious illness.

    Good luck!