Kenjie
Senior Member
- Messages
- 208
- Location
- New Zealand
Please share your story
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
very interesting this all started with pressure and pain at base of skull and neck now when looking up I'm in my most severe pain and it causes pemI have a form of dysautonomia which does not usually meet the requirements for Postural Orthostatic Tachycardia Syndrome (POTS). My heart rate increases, but typically stays low enough to miss the clinical definition. What happens instead is that my pulse pressure (systolic - diastolic) drops below 20 mm. Hg. if I stand for 20 minutes. If this low pulse pressure were always true it would count as heart failure, which I do not have. I don't know exactly how low it goes because I gray out when it is below 15 mm. Hg. Part of the problem is that I may pass out. This kind of autonomic behavior is called neurally-mediated hypotension. (This does not always mean very low systolic pressure, and some medical personnel are willing to ignore pulse pressure as low as 10 mm. Hg. I don't see how that can move blood.)
This started when I was in my teens, and continued during my time in the U.S. Army. Because I had a job calculating for artillery, I became very careful about symptoms showing that my brain was not working. Mostly, I can avoid actually passing out by careful control of fluids and electrolytes and time spent upright. From a psychological standpoint this is counted as "morbid concern" about minor matters of health, and "catastrophizing". Many years ago, when I tried to "push through" an episode, and woke up in the emergency department with a tentative diagnosis of a seizure, I learned an important lesson. I have not had that happen since, though I had to argue with an ambulance crew last year to avoid an expensive and exhausting hospitalization. If my last such trip to emergency does not count as catastrophic, I would hate to see a real catastrophe.
The last EMT crew did take my BP when they arrived, although by that time I was able to stand. They also ran a quick EKG, which showed a steady heartbeat with no evidence of irregularity. I found they were more willing to believe in neurally-mediated hypotension than your run-of-the-mill M.D., who prefers to interpret the neural part as psychosomatic. They told me I could pass out at any time, despite readings that looked pretty good to me. I declined ambulance transportation to the hospital, and had a friend drive me home .
I also have had an implanted vagus nerve stimulator for 10 years. When the episode took place last year I suspected the battery on the implant had died, and an office visit confirmed this. I have since had this replaced. This is not anything like a cure, but generally keeps me out of hospitals. When I was ending up in hospitals they would give me IV saline, after which they couldn't find anything wrong. (Of course I was also lying down.) This is evidence of hypovolemia not due to traumatic loss of blood. The suggested remedy is to drink more water, as if I did not know that. (I will also mention that I need to take a Salt Stick capsule in hot weather to go with the water. Electrolyte imbalance can also fell me. N.B.: Healthy people do not have to consciously manage fluids and electrolytes like a nurse in critical care.)
When there was no evidence of a seizure disorder on an EEG, the diagnosis was changed to treatment-resistant depression, though it was still possible I was having absence seizures while standing, due to poor blood flow to my brain. Nobody seems to do EEGs with patients standing for 20 minutes. Insurance prefers to classify problems as psychological because this is much cheaper for them. So far, it looks like I am stuck with the substantial cost of replacing that vagus nerve stimulator, because powers-that-be have found that it is not very effective in treating "depression". The manufacturer is unwilling to admit they might be treating dysautonomia when doctors and insurance talk about "treatment-resistant depression", despite the well-known involvement of the vagus nerve in autonomic function.
Over time I have learned that I, and members of my family, have characteristics similar to Ehlers-Danlos Syndrome, a connective-tissue disorder, though most would not meet diagnostic thresholds for a disease listed as having an incidence of 1 in 5,000. Dysautonomia is a known problem in this disease, though it is more likely to manifest as POTS in females and neurally-mediated hypotension in males. A wide range of more common pathological conditions occur at much increased rates in EDS patients.
One problem here is that the most common forms of EDS do not show up with genetic markers in about 90% of patients, even when clinical signs are hard to miss. Another peculiar feature is that it looks like different members of the same family can have different types of the disease. A father who died of vascular problems had daughters who seemed to have kyphoscoliosis. Others may show hypermobility in childhood, but not as adults. I would guess that about 5% of the general population is in the kind of diagnostic limbo which falls short of traditional diagnosis, but has greatly increased rates of common pathologies.
Although EDS is far from the only source of dysautonomia, it does show up in substantial numbers of patients. One simple direct cause is cervical spinal stenosis pressing on nerves in the neck, which can be verified with MRI. In some cases this can be relieved through surgery, though this seldom takes place unless the patient has failed to respond to years of treatment for "psychological problems". Here is an extreme example.
You may also experience something called coat-hanger ache.very interesting this all started with pressure and pain at base of skull and neck now when looking up I'm in my most severe pain and it causes pem
Can you tell us more? From your title it sounds like you have autonomic dysfunction. How does it manifest for you? Since the autonomic nervous system controls so many things, you might be more interested in manifestations like your own.Please share your story
Interested in comparisons and peoples experiences with it.Can you tell us more? From your title it sounds like you have autonomic dysfunction. How does it manifest for you? Since the autonomic nervous system controls so many things, you might be more interested in manifestations like your own.
not sweating properlyInterested in comparisons and peoples experiences with it.
Ans is my suspicion but won't know for sure til can be seen at hospital in a few months.
Hot flashes is a major one..
not sweating properly
me personally I don't need no doctor to tell me I have ans damage I sweat in my head now compared to sweating profusely all over my body I actually feel my body trying to sweat my digestion is screwed up even though I eat the healthiest diet my heartrate used to be 40 resting now it is 60 my blood pressure and heart rate fluctuate all over the place when I went to university of Penn several times you know what they said if you down have pure autonomic failure we can't diagnose it and we have no testing for it do you know why they don't because there is nothing you can do when your nervous system is damaged hence you get conditions like me I believe where everybody believes there is going to be a cure I know there is symptom relief out there but total cure I have serious doubts I hope I'm 100 percent wrong@Kenjie
You still haven't told us much about your particular condition, at least on this thread. "Sweaty palms" may be fairly normal, unless they occur under peculiar circumstances. This might also describe hyperhidrosis (means sweating too much, don't you love medical terminology?) There are tests of autonomic function more likely to be run at university hospitals than ordinary clinics which will actually measure autonomic control of sweating. One of these is aimed at finding patchy and uneven response that you may not even recognize as sweating. Another extreme is anhidrosis, some places may not sweat at all. That uneven response in parts of the body that are close together suggests nerve damage, as in MS, and can even indicate where a nerve is affected. This also brings up questions about parathesias -- localized numbness, tingling, shocks or pins-and-needles sensations. Do you have disturbances of balance or gait?
We really don't know much about the clues that led you to suspect your own autonomic dysfunction. Does your heart rate shoot way up on standing? By how many beats per minute? Have you compared this with a basal rate measured lying down after you first wake up? Is simply sitting upright a struggle which raises your heart rate substantially? Do you see narrowing of pulse pressure (systolic-diastolic) after standing for several minutes? Does this correlate with symptoms like sweating or visual and auditory disturbances? Do you have "silent migraines"? (visual disturbances without headache, even negative ones resulting in missing parts of your visual field that your brain fills in with images extrapolated from nearby. In my case this was hidden by a wallpaper pattern which made me think I was looking at a blank wall when there was a sign right in front of me. Fortunately, this was transient, and went away when my brain got more blood.)
Do you suffer from sleep apnea? Are there changes in your ability to swallow or digest food that might indicate problems with gut motility?
Dysautonomia covers a lot of territory. I'm guessing that most of your symptoms do not reach the level of indicating neurological damage, but we need to rule things out before we go after less dramatic symptoms. A few people who come here have much more serious problems than most.
Yes, beta blockers just control symptoms, they don't treat the cause. Not to say that there isn't a place for them though.'m little concerned that the beta blocker is just masking the root cause.
Dysautonomia is one of the common symptoms of ME/CFS so, while you may not have the fatigue any more, this could be a continuation of your earlier problems.