When i first started to feel really sick, i noticed that whenever i stood up, i would almost faint. This still happens to some degree, but is much better now. I was seeing a doctor at UC Irvine Medical Center and he suggested i do a tilt table test. This is a test where the doctor has you lay on a table. The table is then tilted at about a 45 degree angle (maybe steeper) and if you have orthostatic hypotension, will will become light headed. They then inject you with increaseing doses of adrenline. In a person that has ortostatic hypotension this causes a quick drop in blood pressure (the opposite effect of what it should have) and you faint. For me personally, I had a quick blood pressure drop and fainted after the first injection. The Doctor perscribed atenolol, a beta-blocker which is often used to treat high blood pressure. In a person that has O.H., this drug keep the blood pressure from having rapid drops. So, did this drug help any of my chronic fatigue symptoms? Kind of. It made my fainting problem better, but i thought that i might effect other chronic fatigue symptoms like, fatigue or concentration. It only helped the fainting problem. Also i did some reading and here are things that can cause orostatic hypotension:
- Low Blood Volume – can be caused by certain perscription drugs
- Certain Perscription drugs that can impair autonomic reflexes
- Histamine-causes low blood pressure and vasodialation (also causes allergy symptoms)
- Adrenal Hormone Deficiency
- Low salt intake
This is a very common problem for some people with CFS. It can also be treated with a number of other drugs. There is another cause you didn’t list – neurologic/autonomic dysfunction. It can also make your hands and feet cold and clammy.
There are tricks you can use to help keep your blood pressure up when you stand – cross your legs, rock back and forth on your feet. My daughter learned these by trial and error. If you know you are going to do things standing up and your blood pressure is acting up, drink 16 oz of water about 1/2 hour before. It can get tricky – worse if you end up laying in bed too much. It’s important to keep sitting up for a few minutes every few hours and walking around.
Actually you’ve got that kind of wrong. betablockers decrease sympathetic tone. In up to 40% of CFS patients the primary cause of orthostatic intolerance is POTS – which is characterised by an increase in heart rate and dizziness WITHOUT a drop in standing blood pressure.
It may be caused by an excessive sympathetic response to standing causing excessive vasoconstriction – so the beta blocker or methyldopa reduce the sympathetic response to baroreflex stimulation and improve symptoms.
Up to 90% of CFS patients have some sort of orthostatic autonomic disturbance.
I was diagosed with cfs 10 yrs ago and a year later with orthostatic hypotension and neurocardiogenic syncope. Up till then I thought I was really healthy. I had a very successful career and was a competitive athlete. I always had low bp and low heart rate.
Now, I have the warning signs of fainting all day (but its not normal fainting, I come to with hideous symptoms, that will only be lessened by a beta blocker, soy sauce and alleve). Daily, I go in and out of varying degrees of nausea, dizziness, weakness, can’t concentrate, loose my coordination.
I get symptoms if I eat – post prandial hypotension and some kind of hypoglycemia if I dont.
Like Kay’s daughter I cannot lay down too long or everything gets worse as it does if I stay upright too long. Its important that I am as moderately active as possible all day. I have tried orthostatic training with no success- I cant get beyond 8 minutes.
When I had my tilt table test I had an “episode” at 8 minutes. I was trying to ignore the nausea and it was as if I was struck in the stomach/chest by a wrecking ball. The cardiologist, staff and I had been up till then laughing and telling jokes- so its not like I was worried or scared. When I felt the impact, tears spurt from my eyes and the breath was totally knocked out of me. Seeing that my bp and hr had dropped like a rock, they asked me if I wanted to have the table laid horizontal, but I couldnt speak. They asked me again and I was able to nod my head.
I am not a whimp, but no one will ever convince me that that was not a near death experience.
My cardiologist told me I have an overactive parasympathetic nervous system. I will have an abrupt and severe reaction to sudden increases in adrenaline.
I used to have a high stress job and participated in a high stress sport. I think my condition is a heart problem (the nerves are shot). I don’t vasoconstrict like I am supposed to and I also think something is wrong with my blood volume/hematocrit. Soy sauce and green tea tablets have helped the most on a daily basis. Soy sauce calms the vagus nerve which is part of the parasympathetic. I do not know why a beta blocker helps me during my severe episodes-during which I am incapacitated, in alot of pain- it feels like I’m getting a low level of electrocution. The beta blocker leaves me weak, but at least I can fall asleep.
Other things that have helped me are zicam(zinc), midodrine sometimes, matake mushroom. Low dose thyroid med. Compression garments sometimes. Just being cold is great. Any suggestions would be appreciated. I really want to get back to my normal self.
Hello Julie,
As I read your story, It sounded a whole lot like me. I have Orthostatic hypotension with SEVERE autonomic failure.
I had this problem for 6 years before I got a diagnosis. I was treated at the Mayo Clinic in Jacksonville Florida 2 years ago. I took part in a study of a new drug that has been pretty successful in asian countries. That drug was called “Droxidopa”. For me, it was a miserable failure.
My tilt table numbers were 120/80 laying down, 90/60 sitting, and 40/29 standing. I can only stand for a minute or 2 at best. I was advised that my prognosis was not good.
After getting the prognosis I became very depressed and the condition got worse. I was ready to die. I began researching this condition and learned a lot. We are pretty much alone with this condition. Most of the dr.s I saw knew nothing about it. I made up my mind to fight this as hard as I could. I am now 9 years into this and quite frankly not much better.
I was happy to see your things that help you. Some I haven’t tried. I am on 50mg of MIDODRIN a day. That dosage would kill people with normal or high BP. I even had a difficult time getting the medication because the dosage I took was so high.
I have had some success with liquid licorice root, Vitamin B Complex and Cinnamon capsules. Cinnamon has done a lot for me. Caffeine helps a little too.
There is another study currently ongoing in Charlotte. I may go take part this fall. ( If I am still here )
I’m sorry about the problems you are having related to this condition. There is little quality of Life. It’s just kind of like “holding on to life”. I am not ready to go yet.
Please feel free to contact me if you like and we can at least support each other. I have found very few blogs that talk about our “mystery medical condition”.
Take Care, Keep Fighting
Your Friend Rick
To the moderator…. If Julie will agree, please give her my e mail address. Two heads are better than one.
Thanks Rick
I also have this condition and have had it for over 10 years. I also did the droxidopa study and it failed it too.
I am on Mididrine 50 mg. a day as well as Florinef.
They don’t do much for me either. I am going to try your suggestion of the cinnamon capsules.
My son was diagnosed with CFS and Orthostatic Hypotention in Feb of 2009 at the age of 16 after 8 months of seeing several different Dr.s, he is now 18. Our son has anywhere from 4-6 severe episodes a year on average which leave him debilitated and bed ridden for weeks sometimes longer. He has crippling symptoms however all day every day, his Dr. stated after doing extensive research that our son is a severe case. Upon having these episodes some which gave him hallucinations, a heart rate of 200 and thinking he was going to have a heart attack and landing him in the hospital we have found that we know more about this disease than any of the Dr.s, (we even had one ER Dr. tell us that) aside from the one that diagnosed him and he has just recently passed away. They have tried him on a few different medications, fludricortisone/florinef which seems to help a little and paxil which made him extremely sick to the point he was passing out laying down with his feet elevated at a 45* angle. What Im searching for at this point is a Dr. first of all that knows and has studied this terrible disorder and any recommendations or suggestions of other things to look for or might help our son. His Dr. suggested seeing an Autonomic Specialist so we are in search of one if anyone has any recommendations we would be so thankful for any info. I am a huge research junkie so any website or material suggestions would be greatly appreciated as well.
I’ve been sick for 14 years. The dx range from Fibromyalgia, Lyme Disease, CFS. I’ve had every test there is. Just to function I have to take stimulants, with side affects of headaches. I truly believe it makes sense that low BP/low Blood volume is creating it all. Not enough oxygen to my brain causes me not to think & dizziness. Not enough oxygen to my muscles makes them hurt like charlie horses. Why can’t doctors listen to us. Today my BP was 80/65 and pulse was 135. But sometimes my pulse is as low as 50. I had a heart ablation. They burned my heart in 5 places until it quit mis-firing. That was GREAT, but only lasted about 4-6 months. Another theory is lymes disease causes inflamation of the vagal nerve and sends bad (mis-firing) messages. My uncle told me before he died I needed a pace maker; I think he’s right. My pulse skips beats and misfires. I just don’t know. If ya’ll find out please pass it on.