I have my first neuro appointment on Tuesday...and it can't get here fast enough! Went back to the regular neuro last week and despite the symptoms that keep building at an alarming pace, he assures me it's still a migraine and wants me to go get injections at a pain clinic and gave me yet another medication. Pathetic. I am not taking the medicine (
In this last month, things are moving quite fast as far as symptoms building. I'm having increased weakness in my arms and neck. I have a lot of difficulty turning my head and after a few hours upright, it's difficult just to hold my head up. The best way for me to explain it is a "bendy" straw that's all stretched out. It's like muscle fatigue but I haven't done anything to warrant that. Ugh.
Of more concern to me are the heart/BP issues. I've never had issues with BP. When I was at the neurologist the other day, it was high, not just a little high. I can't remember the number exactly...I want to say 153/111. I'm usually right on target +/- 5 diastolic and systolic from 120/80. I've noted in the past couple months that sometimes it gets way low. I've had it 90s/60s. So it seems I'm all over the map. In the past few days, I've noted in particular my heart rate. I typically have a slow rate, resting 60-65. I usually have to give notes to the surgical team when I have a surgery (and I've had many) because when I'm sedated, I can drop to the 40s. I've been feeling kind of "breathy"...like I've been doing stuff, but I'm doing NOTHING. I take my blood pressure and it registers my pulse too. My BP is normal, but my pulse is consistently in the mid to high 80s. I look up tachycardia, and "officially" it says it's above 100, but what if you're pulse is typically lower? I feel this general feeling of agitation in my chest. It's weird. I've had reaction to meds before that have made me feel agitated, and this is what I feel like. My family has a strong family history for cardiac problems, so this gives me some pause. However, I live in a small town, and even if I go to the closest bigger town, if I mention Chiari, I'll probably get referred to the psych unit. I'm sure someone will slip me some anti-anxiety meds to see if that works. Mentally....not anxious. I feel like my heart is racing...it feels funny. So I'm not sure if I wait this out or if I go see someone. I'm reading posts and I see what Chiari can do, but I don't know how to react here. Anyone that can lend some experience here would be appreciated!!
Hi...I always had low BP and heart rate this was long b4 I got my Chiari DX and Drs would tell me to call or go to ER if I became symptomatic...I had no idea what they meant,,,lol...goodness
Neway Chiari affects all bodily function as it affects the brain stem and nerves in the spinal cord, this is the control center for ALL that goes on to keep us alive.
Plus, there r related conditions like POTS- Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia, to be more specific orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia.(source wikipedia)
I had hear palps, so I did have my heart checked with an echo....something we ALL should do to make sure and to have something to compare to if we do develop issues later.
Anxiety and emotions are all over the map and Drs tend to say we r just having a moment that with meds and sometimes a trip to a shrink can help...BS...the Dr does not have a clue...find a true Chiari specialist and u will see how diff and how well they do understand all this.
BTW- ur family may have Chiari or Chiari related issues that r undx'd....do be safe and get testing to know just what is going on.
I would look into a co-morbid condition to Chiari called POTS - Postural Orthostatic Tachacardia Syndrome. I can relate as I've just begun to experience some cardiac/BP issues, too; and I'm 8 months post op decompression and fusion skull to c2. I was immediately put on a BP med when I went to my primary doc for vertigo -- BP was 130/100 and I'm usually 120/60 or sometimes even lower. I feel that the vertigo is related to the BP issue; however, I live in the medical wasteland that is central upstate NY, so NO ONE understands Chiari or EDS or much else if it's more than the common cold. I willingly am taking the BP med (I want the pressure controlled and not doing further damage to internal organs), but I also want answers, too. I may need to travel again to get them. *sigh*
I have been looking at this, and I'm thinking that I might fit into this category...sigh. However, the neuro that I've been seeing put me on BP meds because he thought my headaches could be vascular in nature, and that was disatrous. My system appeared to be a little too sensitive too it and just bottomed out and so did I. Talk about being on the floor. I think it would been easier to just put bricks on my feet! And upstate NY...hahaha...I'm in Central Michigan. I have to do down to Detroit, and I'm not sure if that will be my final stop! Anymore, I just go where I have to go...saves me some stops in between! Ha! Might as well be Montana!
The intricacies of this malformation and what it causes are a BEAR! I just know I hate how I feel....so over this. I am happy that the light is finally being lit on this, but I sure wish there were a few more open-minded doctors out there that are willing to look at the doors opening. THAT would be refreshing. Perhaps then, I could get some help at my local level...even if just a little. Instead, I feel like I can't go see if what I'm going through needs to be checked or not checked for the fear of being treated like a total freak once again. It's terrible that it should be that way. And did I say it was a snow day today....just complicates it all!
I have had several echoes over the years, most recent was within the year, normal, although I have benign arryhthmia which I've had for years. I've had palpitations for years, diagnosed as benign. Done the stress test and all that stuff, but it was about 12 years ago. Was told those palpitations were in a chamber that was not so important...can't remember if it's the upper or lower chambers where they aren't as concerned, but it's the ones that aren't as important. The palpitations are getting more and more prominent.
My belly feels slightly upset as well. I feel out of control, and I don't like that at all. I feel like someone has given me a dose of Reglan, which makes me severely agitated, and no one is there to stop it. I want to cry! I just don't know if I SHOULD go to the ER and have my heart checked or should I hold out and wait for it all to pass, assuming it will. I've had the zingers through my jaw that you get when you feel like you're going to vomit, but I'm not going to vomit. I don't know if that's the same as "jaw pain" that they talk about with heart conditions. No carotid pain. But this has, at least for this episode, been going on for a good two hours now. maybe lying down?
Well I know the emotional aspect of that it is not easy to deal with and if u know ur heart is ok, then u may not need to go to the ER unless this continues with out a let up.....it all depends on how long u can take it.
Many with Chiari also have GERD, could be ur tummy issues...which surprises me that u have such a reaction to the Reglan...however, many with Chiari have EDS and EDSers have issues with many meds....they can affect us diff then the intent.....so I am guessing since u have been given Reglan u have GERD issues dx'd.
My history is so WEIRD. Within my history of 22 surgeries, I have had my right adrenal gland removed. Just before I became pregnant with my last child about 8 years ago, I started feeling something was up in my belly. Started having pain. As I was working on getting this diagnosed, thought it was gallbladder. They took it out. I did have low ejection fraction (5%) but no stones. Because I was pregnant, a lot got overlooked and written off as "morning sickness." I was "accused" of having GERD...I say accused because the "establishement just wouldn't hear me. They just wanted to tell me what they wanted to handle. You know the drill. That's when they tried me on REGLAN. Forget that I didn't have reflux at the time, my belly would just really hurt, not my stomach, to the right of my stomach under my ribcage. Eventually, I was diagnosed with a cyst that was growing on my right adrenal gland that was 11 x 16 cm (on the little walnut-sized gland!) I went to Mayo and had it "emptied" a couple times, and then when I was 20 weeks pregnant, it was "deconstructed" or fenestrated. All was fine and good for a few weeks and then it started to grow back. I went back to Mayo after the birth of my son, and they did an experimental procedure which bombed. They did an ethanol ablation like they do for heart patients to open arteries, but it left all this scarring and material there and it caused me great pain. I tried to have them fix it, but I got a "sorry our treatment has failed," and had to find other help. I should have listened...the whole time they said they'd never seen anything like that. Eventually, I found a doc at Cleveland Clinic who helped me. He took out the right adrenal gland. A painstaking process as all the scarred material was now adhered to my inferior vena cava (the largest vein going to the heart). It could cause some huge problems if they nicked it, but I made it! I was told the remaining adrenal gland would pick up the function, but I'm really wondering if it's not doing that. Just since I've posted, I've been doing research...wondering if I have a non-diabetic hypoglycemia. I did have a Glucose Tolerance Test a year or two after the surgery that came back normal, but I've had issues since the surgery. Hmmm.... It would almost go hand in hand with this. Do you have any thoughts?
Well adrenal inefficiencies can be part of a EDS DX too...I know of a member with these issues.
Plus those with EDS have a higher tendency to develop scar tissue, someone without it can too, but we r more likely to develop it...
As for the glucose I do not know what to tell u, I know I was hypoglycemic when I was pregnant with my DD and it all straightened out afterward....since, I have been trying to keep my cholesterol below the avgs since the higher they go, the more likely to develop diabetes...and it does run in my family....
Deff have more testing to see what is going on,...wish I could offer more insight.
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