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Hi Barbara
I shall look into these options when I get back, the collar and diamox. Some of it will depend on results of the MRI etc….but I am certainly going to try anyway and the home made tilt test.My cholesteatoma was confirmed on a CT scan, they couldn’t see it through the ear canal as it was a bit of a mess. Had a polyp in there too. Been feeling pressure in this ear a lot lately, and to a lesser extent the other one. I do wonder whether flying, albeit 6 weeks ago, influenced this, but as i am confined to indoors with such hot weather outside day and night(30s by day, low 20s by night) the air conditioning is constantly on. I’m thinking this might be playing a role. By way my CT scan was only of my ears, I saw it and there was nothing of my brain just area around my ear. I am due to have an MRI as it will soon be the one year anniversary of my op, with a view to second look op (often a pearl of cholesterol a can grow back). I’m dreading this seeing as how bad I feel.
One thing I am now very concerned about are my blood pressure readings. They do seem to alter with posture and with each arm, right are more worrying, where I have more symptoms. I have a collection of readings with a narrow pulse pressures under 30, including a few under 20. BP this morning was 105/87 whilst sitting, then standing it was 119/83 which was better, though sitting to standing can vary, and the can systolic drop also. I’m actually less concerned about my heart rate at the moment and more about my BP. Infact I had one reading today of 107/97 whilst seated. A little OCD now, but I think this disease or whatever it is certainly does that to you. Other readings over last 24 hours include 107/82 and 114/82 on seated, the latter in left arm.. On standing 119/83 and 105/79 etc….. I get the feeling that despite having 3 normal ECG’s over the last 6 weeks, though been 4 weeks since last one, that my heart is really under distress, worryingly so. I have had more chest pain over the last week, it comes and goes, but was more intense yesterday like right at the beginning when i arrived in australia 29th dec. My diastolic readings are high, in the 90s, it is like the pressure in the ventricle when the heart is relaxing is to high, therefore reducing cardiac output. Could this therefore be explaining most of my symptoms? The chest pain, the dizziness, the faints, headaches, the freezing hands (especially the right), the bowel and bladder disturbances, the twitching everywhere, but visibly in fingers and toes. I am drinking well, and peeing small volumes often 12-15 times a day). I just wonder whether my whole body is being hypoperfused, coupled with a lack of nutrition (my toenails are going brown!). Do I need an urgent echo? I already think the doctor thinks I’m bonkers, did I mention that he said that word ‘panic’ with reference to this! Typical. Just not sure whether I am sitting on a ticking time bomb here. When gp looked at my list of BPs I think he just saw that my systolic readings were much lower than they had been in surgery, and my diastolic readings not overtly high (except for last 24 hrs which gp hasn’t seen).I think perhaps him not knowing the significance of narrow pressure, I mean readings that low are not usually primary care issues but ones of trauma and a&e, when patients are in shock or close to arresting. My BP machine works as when i was with gp last tuesday we tested it against his machine and it was almost identical. This pain in my chest, the clicking or dislodging sensation I sometimes have, could be the signs. Oh dear, not sure what to do. I’m sure you will agree with my concerns….
By the way did you always get high diastolic readings and narrower pulse pressures when you had chest pain?
Anyway thought I would run it by you.
Thank you
RichardHi Barbara
By the way did you always get high diastolic readings and narrower pulse pressures when you had chest pain?
Thank you
RichardHi Richard, and welcome to the forum! Barbara has given you some great answers, I see. I’m not sure I can add much to her excellent advice, but I’ll throw in a couple of thoughts. First, I know plenty of males who have dysautonomia/POTS! Guys are sometimes less likely to use social media for health issues, I think, or we’d hear from more of them. I know a few whom I correspond with outside of the forum for that reason. For me, I was ready to post my symptoms on the internet if I had to! I just needed answers! Next: diet. For a while, if you can avoid gluten, lactose, and some of us are fructose sensitive (just watch how you feel after eating fruit), and histamine foods (cheese, fish, left-overs…) that’s a great start. Did ZZ meds help with the diarrhea? After 8 WEEKS of incapacitating diarrhea, ZZ drugs stopped mine in 36 hours! Fingers crossed. Diamox and hydrocephalus: You likely know you need to get your images yourself, right? External communicating hydrocephalus is missed, more than caught, I’m afraid. But with symptoms and signs of hydrocephalus, Diamox is a God-send. You may have seen my video about my friend who vomited every time the cabin pressure changed in an airplane… Yikes. Her MRI showed hydrocephalus (rather severe), but was STILL missed by the radiologist. Diamox allowed her to fly with no problems. You likely won’t need it forever, which was a surprise to me. Let us know? Pituitary: My research indicates that we may actually have (additional) damage to our hypothalamus (which of course controls the pituitary). I don’t know if it is from pressure (which varies — we can’t have it under control every minute with a “static” medication), or from poor blood supply to the hypothalamus, but keeping an eye on everything from free testosterone, ACTH, DHEA, cortisol, thyroid levels, etc. is a good idea. Cool? Posture: I truly believe that most of us develop some laxity (EDS patients have a double whammy) of many ligaments which makes a soft cervical collar one of our best friends at night time! I have an adjustable bed so that I can raise and lower the head of my bed as needed. What a God-send. If CSF/venous blood is not exiting, I know it, and elevate my head to almost a vertical position to drain, then I can go back down again. I had a bad valve at the base of my internal jugular vein. When we lie flat, venous blood drains through this vein. When we’re vertical, venous blood drains through the vertebral veins (thank Heavens). So, remember, you may need to change position in order to “drain”. Finally (I’ll stop here!), PLEASE keep an eye on your “blood thickness”. Many of us have genetic causes for blood thickening, but most of us who have been sick for a while develop it anyway. (Research as to the cause — and treatment, coming soon!). My family history was horrible, not unlike yours — MI’s, phlebitis, strokes, etc everywhere. Yikes. Blood thinners allowed me to exercise again, and BOY, do they help with cognition! Hang in, my friend, 😉
Oh, Richard — I forgot to mention that most of us have LVDD (article on my website), diagnosed with an echo. M.S. patients are also prone to developing this. One of my abstract publications was about how LVDD occurs (what chemicals were involved in tissue remodeling). I was looking for clues that could link the two conditions… I have LVDD, too, but it is likely NOT the cause of symptoms, but more of a red herring for the cardiologists. An AngII blocker is a decent medication to consider with your cardiologist. Narrow pulse pressure: many of us notice that, too. I know of one patient/friend whose latest BP reading at her doctor’s office was 90/90. Kid you not. Are the vessels becoming fibrotic? We don’t know. I will tell you that mine went back to normal, so I don’t *think* it’s fibrosis/sclerosis. I am curious if you ever flush? Have spider veins? Varicose veins in the family? Aneurisms in the family? When you have your echo, can you ask them to pretty please check the diameter of your inferior vena cava? Those can give us some clues… And FINALLY (promise), did you order your “23andme” genetic tests? You may want to consider doing that. We are opening the discussion to our genetic defects, and I believe these will guide us toward answers, I really do. Keep the faith, my friend. I got about as bad as one can get with this condition, yet am now thriving. It wasn’t easy, but problems I thought were permanent, I was able to correct/heal/recover. You’ll get there… 🙂
I’ve had another thought, many of us have a low temperature (for instance 35.4 – 35.7 is normal for me). Do you know your base temperature ? When a GP looks for signs of infection, they will look for a raised temperature. Now a raised temperature, for many of us, would be 36.5 – which is everybody else’s normal temperature!! Therefore infections can be missed when based on temperature. I always remind my GP that I’m normally low.
I am wondering if you have an infection and need anti-biotics. It maybe where you had your ear surgery. This would cause inflammation and raise your intracranial pressure, particularly on the left (which would explain the accentuated right sided symptoms). You may say that your surgery was months and months ago but, let me tell you that we don’t heal like most folk. I’ve had infection occur within a scar that’s been there for many years.
Just wondered if it may be worth asking your GP to take your temperature in both your right and left ear (just in case there is a difference between the two).
Regards
Barbara
(UK)Just wondered if it may be worth asking your GP to take your temperature in both your right and left ear (just in case there is a difference between the two).
Regards
Barbara
(UK)FASCINATING question!! I’m dying to know the answer, and wonder if anyone else has a consistent difference. My right side is my “bad” side… Hmmm… If I had to guess, any difference may be small, and doctors may attribute it to normal error. Anyone?
The BP’s I took were always different in each arm. Regardless of whether sitting or standing, the only ‘constant’ was that when chest discomfort started, my diastolic BP reading was always above 90. The pain and chest tightness I would get would be on a latitude of just above half-way up the breastbone, slightly to my left.
Hope you are managing to eat at least one banana a day, as you definitely need as much dietary potassium as you can get, looking at your reading. Another source of potassium is fresh orange, or fresh orange juice.
Regards
Barbara
(UK)Thanks for your replies ladies….
I see gp to get results of MRI on Wednesday so I will ask about temperature and get him to look in my ears. I do take my own most days, so OCD lol, and actually during the day it can range anywhere between 36-37.5 though this is with oral thermometer. It probably dips below 36 in the early hours, though that is normal I guess. Saying that i reckon i have more variation rhan most. Funnily enough I have taken my temp under my tongue on the left and right side and it is almost always different, either by .1 or .2 of a degree. Doctors are only interested in absolutes really, if I am not pyrexial then i am fine. Mind you as anything over 37 is considered a fever, I regularly have low grade fevers. But is that a variant of normal? Is it due to problems with the hypothalamus? Just don’t know.
I am playing detective a bit and trying to work out if I have developed a chronic illness like ME/fibromyalgia with significant dysautonomia, or whether I have an undiagnosed genetic disease. Or is it idiopathic!! Looking forward to seeing my gp’s blank face when I m back in the uk when I tell him I think I have developed a significant dysautonomia! When I mentioned it to the gp here in oz he mentioned the flight/flight response and panic! There certainly isn’t much knowledge out there.
I’m sure the answer will be yes, but sleep dysfunction, exacerbates all symptoms, but in particular the orthostatic intolerance?
Potassium is especially important if you are on Diamox (and you will want to be sure you and your doctors are checking your potassium levels). For all of us, we can’t forget about MAGNESIUM. I remember when Dr. Francomano explained to me that ALL of us were low in magnesium intracellularly. So, no matter what our blood levels reflected, we should always take magnesium supplements. If you google symptoms of magnesium deficiency, you’ll recognize quite a few of them! Mind you, the cause of these symptoms may not be (solely) from magnesium loss… 😉
Just took my temperature, at 1.45pm, sublingually, 36.8 on the left, 36.6 on the right. Replicated it 5 minutes later. Just another thing to add to the long list of things that are just off!
I’m sure the answer will be yes, but sleep dysfunction, exacerbates all symptoms, but in particular the orthostatic intolerance?
YES!! 😉
The sleep dysfunction contributes to many symptoms and I have to say, mine much improved with the Philadelphia collar, in that I wasn’t waking up every 2-3 hours BUT what has also helped immensely is taking Zyrtec (Cetirizine) – this has enabled me to dream again, showing that I am now achieving a deeper level of sleep, something that I hadn’t experienced since my accident, yeay!!
Are you on the Zantac & Zyrtec (ZZ) regime Henry40?
Regards
Barbara
(UK)I started the ZZ 5 days ago. I did have an improved couple of days, but the last two have been bad, exacerbated by the lack of sleep!, and then on waking each time having these visual sensations and dizziness. I shall continue on them though and hope it improves. I think I need diamox but without evidence I am not sure I can convince the gp to give it to me, I haven’t checked but I would be surprised if the gp was licensed to prescribe it.
Are sleeping pills good or bad for us? I had considered asking doc for some benzo’s for the flight but not sure it’s wise, and maybe to just try Benadryl (for sedative effect)…
Thanks
Richard
I personally would not advise taking sleeping tablets if you have a diminished respiratory drive.
Diamox (Acetazolamide) is licenced for altitude sickness and you were at quite some altitude when you became sick! Let them argue otherwise, as they have proved nothing else. You will be subject to the same altitude/pressure issues when you fly home. I have heard some aircraft companies do not alter the air-pressure adequately, something to do with fuel saving (or something) – unfortunately we (who have very limited pressure tolerance) suffer the consequences. See if the doc will prescribe just a few tablets, sufficient to see you through the journey.
Regards
Barbara
(UK)Ok well first job is to convince him I have significant autonomic disturbance, not anxiety, and then second challenge is to get him to prescribe. Ok well thanks for all your advice again 🙂
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