Has anyone had issues with low blood pressure? I recently have been having dizziness and light headedness accompanied by significantly low blood pressure. For a few weeks my BP was down around 85/55 but has returned to about 100/70. Even at 100/70 I am noticing lightheadness, dizziness and heart palpitations. I had an ECG, heart monitor and blood work and my Dr. said everything looked fine and she couldn’t determine why my blood pressure had dropped and remained low. Just wondering if anyone has had a similar experience and if it has anything to do with Chiari. Thanks for any advice.
I have had high blood pressure discovered in 8th grade health class. Have had high blood pressure ever since, and I am on medication. Probably due the the compression on my spinal cord. I had fainting, seizures, and lightheaded while growing up. Over the years I have also had extremely low blood pressure at times, which I thought was odd and scared me, but the doctor never seemed alarmed by it. I just found out I have Chiari in December. I hope this helps.
I forgot to mention, I also have had heart palpitations for as long as I can remember. They usually only lasts 10 to 20 seconds. Lately I’ve been getting them while I’m sleeping and I wake up with my heart racing. I had a TIA in 2005, not sure if it is related. New Neurologist thinks it was a Basilar Migraine and not a TIA. I am 54yrs old.
Thanks for the information. I also have the same type of migraine. I’ve had high blood pressure and now all of a sudden it is super low. My pulse does the same thing! Odd! It does seem like it might have something to do with the Chiari due to the compression. Best wishes to you!
Hi, I ended up in the hospital for a night with the Basilar migraine. I don’t remember 5 hrs in the ER. I had horrible neck pain for a few days leading up to fainting, vomiting, double vision, head pain. Had MRIs, CT scans, X-rays etc. heart tests, they did find 50 to 60% blockage in my right cartiod artery, 30% in the left. They never discovered the Chiari, but it was there! I have the scans! I have also had Hemplegic Migraines with vision loss, numbness in my face, paralyzed left arm and leg, and I had trouble speaking. I have had about 5 or 6 of these. I use to get Classic migraines with vision loss, numbness, and vomiting every week, many were hormonal. I use to have head ache/pain everyday. It’s gotten better since I am not over exerting myself. I am doing less, taking care of myself. No heavily lifting, bending over, bumpy rides, etc.
I had the same issue where I had probably 4-5 MRI’s done before they saw the Chiari, although it was on every one of them! I think Chiari produces some intense symptoms. I have had many of the same as you. Many times wondering what is going on?? Only to realize it’s probably the Chiari. Have you had decompression surgery? It is really important to take it easy and know what triggers you. It has taken me a long time to get that down! Have you tried any physical therapy? Right now I’m going to a really great therapist at a pain clinic and he is wonderful. It is really reduces my pain and migraines.
Hi , no I have not had surgery, plan not to. Neurosurgeon recommended surgery for Chiari and Neck in Feb. I started therapy on Friday. Didn’t do much. Right now many of my problems are due to my CSS. I am wearing a collar a lot and it helps my pain.
Low Blood Pressure is a problem I’ve had ever since chiaris started to torture me with symptoms. If the brain stem has been damaged from the Chiari compression, then anything to do with your Autonomic nervous system will have glitches. That means everything your Central Nervous System CNS has to do without you thinking about it - like breathing, heart beating, sweating, eyes making tears, reflexes, and BLOOD PRESSURE. The Tilt Table test is the ideal test to see whether the brain stem has permanent damage. And EKG measures your blood pressure while you lie down. Then, the table is tilted up halfway to standing. In a normal person, the brain stem would register “Oh! Increase in gravity! Time to increase blood pressure!” But, in a brain stem damaged creature - like Chiarians - the blood pressure does not increase and you will pass out. That’s what I’ve done every time. Prior to decompression surgery, I passed out in 10 seconds. A year after the surgery, I still passed out, but it took 7 minutes instead. I also permanantly have “Orthostatic Intolerance.” That means due to low blood pressure, I cannot stand on my feet without moving for very long before BP drops through the floor! Yeah. It’s all because of brain stem damage.
Thanks Beth, this is very helpful!
I forgot to add…! If there is anything FUN about having chronic low blood pressure - this allows you to eat a lot of salty goodies!!! Salt raises blood pressure, of course. Most folks have to avoid salt because of HIGH blood pressure. But, the reverse is true for low blood pressure sufferers. I don’t know about you, but I’ve always loved salty snacks way more than sweet snacks. Also, I love to ‘coat’ my food with a generous sprinkling of salt. Yum!
I’m sorry I missed this earlier.
Here is what I know about low blood pressure and Chiari that may or may not be helpful. IF something is going on with CSF flow it can put pressure in the brainstem area causing low blood pressure. There is also an enzyme called the Angiotensin-converting enzyme. that can also effect the brainstem (its rare but far more common than symptomatic Chiari.) and cause low blood pressure. Its often related to some disease process (most often lung stuff) and most often temporary, but often common with CSF issues. This would most likely for Chiari patients a post-operative complication. ie a slow leak. There is a massive work-up that can be done but usually they just do an ACE level. Almost always some prednisone makes a difference. This is a tough one to explain because its pretty common in the case of some cardiac stuff the prescribe and ACE inhibitor to decrease the production of angiotensin II. In this case it LOWERS blood pressure By dilating the blood vessels.
Clear as mud? Low blood pressure is a MAJOR cause of headaches both cluster and migraine (not to mention stroke, heart attack, constipation, flushing, rash, and nausea. Its generally NOT Chiari related nor are the CSF associations. Here’s why:CSF is produced mainly by a structure called the choroid plexus in the lateral, third and fourth ventricles. CSF flows from the lateral ventricle to the third ventricle through the interventricular foramen (also called the foramen of Monro). The third ventricle and fourth ventricle are connected to each other by the cerebral aqueduct (also called the Aqueduct of Sylvius). CSF then flows into the subarachnoid space through the foramina of Luschka (there are two of these) and the foramen of Magendie (only one of these).
Absorption of the CSF into the blood stream takes place in the superior sagittal sinus through structures called arachnoid villi . When the CSF pressure is greater than the venous pressure, CSF will flow into the blood stream. IF the individual has low blood pressure, guess what happens to the CSF flow? The symptoms are same as chiari as is much of the physical exam results are the same, the headache fatigue ALL of it is the same as chiari… Along comes a surgeon, who instead of treating the blood pressure cuts hole in someones head.
YES the low blood pressure is a really big deal.
The Chiari does that as I’m sure you already know. Mine has been fluctuating very low in the last two years. I just had a 104/70 and felt week and dizzy. So, I can’t imagine what a 85/55 felt like. What is incredibly humbling to me is when the answer is always, “seems normal to me”. So, yes, it has everything to do with your Chiari. You will find your doctor appointments will start to feel like you are just checking in after a few years. Even after decompression, I almost wonder why I go.
What is hard is, when you get to that “checking in” relationship with your doctor, it hurts your relationship with he/she. You see with Chiari (I have syringo too) a patient is constantly monitored.
Like you, sometimes I feel like I am floating off into the abyss and no matter what I tell him it’s always “sounds normal to me”. What I’ve discovered is…when they are saying that it is in fact “normal”, that’s because it is… for a patient with Chiari. Make sense? I know sometimes…just an ounce of sympathy would be nice from them :(. I guess they figure they’re not paid for the dispersion of empathy.
Hope this helps…keep your chin up…
No they are not. They see 100+ patients a week. Empathy kills them, eats them up, and clouds their judgement. I’m not saying that excuses bad or rude behavior. BUT by the same token until they have the opportunity to know YOU, false empathy/sympathy is not helpful. I have yet (and I have bee around a LONG time to fail getting to a really good place with my docs, But its work. I think thia has been posted before but is worth a read again ( It was written to patients with chronic illnesses by Rob Lamberts, MD, in his blog “Musings of a Distractible Mind(Thoughts of an odd, but not harmful primary care physician).” It was originally posted on July 14, 2010 and is reprinted here in its entirety ):
Dear Patients:
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.
So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
Sincerely,
Dr. Rob
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Wow, this is really great! I had not read this before and honestly this really helped. I think I really needed to read this. Thank you for posting. I think I sometimes forget that Doctors are normal people just like you and I. Thanks again for this.