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Orthostatic Hypotension and Fibromyalgia
7 Replies
a_pough - May 25

I have had Orthostatic Hypotension for 11 years now, but the episodes have become more severe and more frequent in the last year or so. The severity is that I now have some confusion and severe headaches after an episode. I am now on medication to prevent my pressure from decreasing, and I have added a tremendous amount of salt to my diet. I began researching Orthostatic Hypotension and realized that there were alot of links to Fibromyalgia (which I also have and I am on medication for it as well). I am wondering if there is anyone else out there with both of these conditions, and if your physician(s) has ever told you that they are linked? I am also wondering if anyone has heard of there being a Nervous System dysfunction that would cause both conditions to be present?

Thanks~ AP, Wife & Mother of Two

 

Sonja44 - May 26

I not only have Orthostatic Hypotension...but I also have a condition called (and I may spell it wrong today due to a very foggy brain) Nuerolly Mediated Hypotention.

Basically NMH causes BP to drop at any time. I could be sitting at the computer and boom...the life has been sucked out of me...so weak I can barely breath because it takes too much effort. I have to lay flat until it passes. I've been out and about in a standing position reading movie titles and the crash will come.

I worked in a hospital when me initial CFS/FM and NMH symptoms started and my Vitals would be checked (documenting my BP at 78/46 and a pulse of 47) during each crash. One one knew what was happening to me. I had a Doc tell me to stand up more slowly. I said I hadn't tried to stand up during these crashes. He had no response. I went elsewhere for help.

From what me and my GP have researched...yes they are connected. Not a lot of info out there on LOW BP disorders. I'm on a med now that helps regulate my NMH and Fibro. I still have bad days and have to conserve my energy but I don't have the severe crashes I did in the beginning.

Good luck to you my fibro friend.

 

a_pough - May 28

Hey Sonja44,
Well, I know for a fact that NMH is related to Fibromyalgia. But, there are not enough studies out that say whether OH is related to Fibro. I went to see my Neuro yesterday. He was a bit confused as to why no one had ever tried to figure out what was causing the OH. He said saying someone has OH is like saying they have a fever...the question is, What's causing the fever?
I am so sorry about your NMH. It seems that it is worse than my OH. Are you allowed to drive? Can you get disability? Also, what did the Dr prescribe for you OH? Thanks for your response, hope to talk soon!

 

Sonja44 - May 29

I am on disability as of this past month...it only took 2 years. I still drive...but I do not leave the house without my cell phone...ever. Or, as my husband says, "No away missions without a communication device." LOL.

I take Verelan pm for my Low BP. It is actually a High BP medication but used at its very lowest dosage it has been found to regulate low BP. It also helped my palpitations and heart pain decrease.

Sometimes if I turn my head to fast...I get dizzy or even black out. I move like a turtle for the most part. Its very frustrating since prior to CFS/FM...I was an Athlete.

I too have increased my salt intake. I've had 3 docs suggest the increase in salt...so when people look at me in horror as I salt things...I can say truthfully that it is doctor prescribed.

Do you get cold after a low BP episode? I turn into an ice cube...shiver and shake for a while. Hot, caffeine free, tea...blankets and 3 or 4 layer of clothes help. It takes quite awhile for me to "fully" recover from a crash. The quotes around the word fully is because my recovered self is still in pain and fatigued.

What BP med do you take?

 

solanadelfina - May 29

If I may, how did you guys get diagnosed for the hypotension?

I still haven't figured out the cause of my lightheadedness spells yet. Some days I'm good, then all of a sudden my equilibrium is gone, my eyes have trouble focusing, I get really warm and I need to hold onto something as I walk for support. I also get this need to lie down RIGHT NOW. Haven't blacked out yet, (knocks on wood.)

I had one spell an HOUR before we left on a road trip to attend my grandmother's funeral, and I ended up lying down the whole trip and had to leave the wake early to go crash in the hotel. (Grief and stress make it worse.) It went away somewhat for the mass, so I could still do the readings, but was still tired and groggy the next day. Today was much better, until an hour before lunch and it kind of hit again. Lying down and more sleep seem to help, or cooler or fresh air.

I've been adding more salt to my diet since picking up the tip in a book. The EEG, MRI, and BP and blood sugars have been within normal range, although the BS was somewhat low.

Thank you.

 

solanadelfina - May 29

I forgot to add that hyperventilating produced the same symptoms. The neurologist suggested that I wasn't breathing properly in times of stress and considered it case closed, but I've been doing slower breathing exercises and these spells can last for hours, so I'm not entirely certain that that's the sole reason.

 

a_pough - May 29

To Sonja44 - I am taking Florinef (or, Fludrocortisone). It was prescribed by my Cardiologist to keep my salt/fluid in my body to keep my BP for dropping when I stand. I didn't realize that NMH and OH were so different! I would like to work but I can deal with the Fibromyalgia (which is painful and a whole other issue in itself) but I can't work not knowing if I am going to pass out everytime I stand at work! The worse episode I ever had was when I was home alone with my four year old and one year old. I was laying down on the sofa, and decided to get up to check on them playing in their room. I remember getting up from the sofa, but after that I just remember waking up with a really bad headache in my frontal lobe! I couldn't speak or move my head. We have taught our four year old how to call dad, my mom, and 911. So, she had already called my husband and he was on the way home when I came to. She had also called my mother who had then called my Cardiologist. They put me in the hospital at that point.

No one in my family understands how I am the only one with low BP. I even had someone say I guess that would be better than High BP. NO WAY! I read that they are equally bad for your body.

I never get cold after an episode. I think that maybe a difference between our conditions. I just get confused about my surroundings, headaches, sometimes shortness of breath, and inability to talk for awhile. It also takes awhile to recover from an episode but I don't think that it takes as long as yours.

To Solandelfina - For me, my BP is not always low! It can be normal until I sit upright or Stand from a laying position. (orthostatic -changing position from laying to sitting/standing) Than it drops. From what I have read. My body doesn't tell itself to overcompensate my BP when I stand, so all of my blood travels to my legs and doesn't go back to my head like other people. That's were the Hypotension comes into play. For Example, I took an Orthostatic Test (you can also have you DOC do a Tilt Table Test). Basically, the Dr. took my BP in a sitting position, laying position, sitting position, and standing position. The first reading the reading was 120/78, laying down it was 117/?, sitting up 107/?, standing 97/? The nurse had to sit me down and call the doctor in when I stood up because I almost passed out, got really dizzy!

While being on medication, I don't have the episodes as much or as bad. But, I still get lightheaded when I stand and I get headaches in my frontal lobe. My headaches literally feel like the blood in my head is being drained out! or, like a really bad sinus/meningitis headache (very painful).

Ask your Doc to check you for Orthostatic Hypotension or Neurolly Mediated Hypotension or POTS (Postural Orthostatic Tachycardia Syndrome, I think?) I believe POTS and NMH have heart palpitations, etc. Also, NMH and Fibromyalgia are linked. Read about them on the web. Let me know what the docs say.

 

Sonja44 - May 29

In regards to getting your low BP diagnosed, there are heart monitors that your doc can order for you to wear for 24 hours or longer. Also, there is a Tilt-Test for OH. I had my BP checked by an RN 2 to 3 times a day which documented the lows and drops.

Due to my low BP, getting blood during any testing is a process. Warm towels over my arms...the smallest butterfly needle...and patience from the person drawing my blood cause it comes out very slow...when they can find a good vein.

Headache (feels like my brain is throbbing and ready to explode out the top of my head), brain fog worsening, being cold, speech disrupted, weak, lightheaded, dizzy, and fatigued. All after effects of a drop in my BP. If my BP stays around 90/58...I'm thrilled.

I currently have a headache from "helping" get ready for a yard sale tomorrow. I was vertical for too long. Good thing my family is running the sale.

 

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