Mango, Migraines and POTS

Sorry, this blog post is going to be kind of all over the place so much has happened in the last month! Also sorry for no updates but I have been having a rough month healthwise and have not had much energy at all. Anyway, the above picture is one of the most recent I have of Mango. He is doing so well! He’s growing really big though he is still a lot smaller then most kittens his age would be. He is now eating dry kitten food (Hill’s® Science Diet for Kittens) and has been for a while. He’s such a feisty happy little guy and we are so lucky he survived. Marmalade is buried with another pet cat we lost (well, mom and dad did) back in June, Pumpkin in my parent’s backyard and mom made a beautiful memorial to them. Overall it’s been rough but I take comfort in knowing that he is there with Pumpkin and that he was with me for his last hours and I am doing really well mentally with it.

Physically I am not doing so hot. I have been having symptoms for a while which I thought might be some sort of dysautonomia and it turns out I was right. My family doctor is pretty sure I have POTS (postural orthostatic tachycardia syndrome) which we are now looking further into. I have not been clinically diagnosed by a Cardiologist as I am still waiting to see one but I have been diagnosed with the “poor man’s tilt table test” in both his office and in two different ER’s on 3 different days all of which led them to say it seems to be POTS.

This has led us to talk about a lot of things, including mobility aids such as a wheelchair and other things. I’ve also been diagnosed with severe migraines as well. I have been having issues for a long time with vertigo upon standing or even sitting up  (I have years and years worth of posts about it here), issues with my digestive system including an IBS diagnosis (in my 20s). I have been diagnosed with both chronic idiopathic urticaria and dermatographia. I don’t know exactly when but it was since Eddie and I have been married. Now we are thinking that it might be more along the lines of POTS and Mast Cell Activation Syndrome which makes sense.

Everything seems to be making more sense lately when it comes to my health. Things are starting to fall into place, unfortunately as my health seems to decline a bit. I am now not able to walk very far. I can not walk around a store (sometimes I can get away with it if it’s quick and I use a shopping cart to keep me upright) or go for walks or hikes. Not because my legs don’t work. They work fine. I just get so dizzy and blackout or almost blackout. I have not fallen in a while but only because I know not to put myself into that position, which means doing nothing and going nowhere.

I am back in school and doing well with it and only going up to the city once a week (sometimes twice) but we have been trying to get it to be on days Eddie is off so I have company. Right now the biggest struggle is walking through the campus to class. I haven’t seen my doctor in person in a while because of covid but I might ask about a handicap permit. I am seriously considering what to do because I am missing getting outside. Over the summer we mostly drove the car right down the path to the camp so I wouldn’t have to walk and I crawled up the steps to the pool and got in, once in I was okay. For winter though I am seriously concerned about falls.

I have been put on a medication called propranolol which should help with the POTS symptoms. It’s brought my heart rate down from being about 100 when resting to about 65 and it’s helped steady my blood pressure. I was warned it could make it go too low though so I have been keeping an eye on that. We bought a shower chair because the heat in the shower was making me blackout. By blacking out I mean basically my vision going completely black. I can still hear (though sometimes it seems muffled) and I don’t always actually fall. I try and grab onto something till I feel better and that works around home as my house is not that big and I always have something to grab onto but it’s made outside activities such as walking, hiking, camping, etc impossible to do.

It’s also left me sleeping all night and most of the day. I am getting upwards of 18 hours asleep and it still does not seem to be enough. I fall asleep anytime I sit down and lay even the slightest back. I went from never sleeping during the day to have to take 2 naps a day. I always feel like I have no energy and every single thing I do seems to take double and triple what it should out of me. I still feel like I am getting somewhere though as this time the doctors are actually seeing it. They are witnessing me falling asleep while talking to them, fainting when I stand, etc and now they are taking it seriously. I just hope that covid doesn’t mess with a clinical diagnosis too much.

Not that it matters much, one of the main treatments of POTS is the medication I am already on and also using a wheelchair which I have no insurance for so if I get one it will be out of pocket anyways and will not require a clinical diagnosis or prescription. My doctor suggested a custom one so that I am not doing any more damage to myself and I will also be able to just keep it with me and walk when I can since I should still walk as much as possible. So I guess we will see. I’m not convinced yet.

I need to see a cardiologist

Photo by Khadeeja Yasser at Unsplash

I had a doctor’s appointment today in Halifax. I had to go into the office because I needed a pap test. Since I was going into the office I had wanted to talk to him about the racing heart/high heart rate, dizziness, and all the other symptoms that I have been having since earlier this year. I was a bit concerned he might not take it seriously, but I needn’t have worried because the happened right there in the office as he was watching. I mentioned it just a few minutes before it happened and he asked what my Fitbit Versa lite said my heart rate was. It said 121, he checked with one of the finger pulse ox monitors and it said 125.

After the pap test, he handed me my bottoms and asked me to wiggle into them if I could without sitting up and left for a moment. I wiggled into them and called him back in and he then checked my Fitbit and it said 80 and his pulse ox monitor said 84. He then had me stand right up. It took about 45 seconds but I started getting dizzy. He checked again and my pulse was 125, he had me continue to stand for 5 more minutes while we discussed other symptoms and he checked again and I was 143.

He asked if this happened a lot and I said often. Basically I noticed it sometime after my car accident and it got worse about March or April until it was several times a day that it would happen. Interestingly enough it’s happened to me before. It’s been happening off and on for years and years. He said this was not normal and indicates something really is wrong. So he wants me to get blood work to see what it comes up with, in the meantime, he’s going to refer me to a cardiologist and is hoping they will set up a monitor to monitor my heart for a few days to see if they can diagnose something.

While writing this I decided to do some searches on my blog for similar symptoms and found a bunch of stuff. I actually mentioned the symptoms in a post back in February of this year, and I mentioned it as far back as this post in May 2013. I mention headaches, nausea, and dizziness or vertigo and throwing up and trips to the ER for fainting or falling.

I remember going to physio and looked it up and I ended up in physical therapy at the Atlantic Balance and Dizziness Center in 2013 for what they thought might be benign paroxysmal positional vertigo, which they could not definitively diagnose as I did not have nystagmus (repetitive, uncontrolled movements of the eye), which I mention in this post in March 2013. I am wondering now if what I was experiencing back then is the same thing as now.

I don’t remember what tests they did at the time. I have been trying to figure it out by going back through my posts from early 2013 but I can’t find any specifics, I am sure they did some though. I do talk about “brain fog” or concentration issues/confusion. I also talk about poor sleep or insomnia, fatigue, constant pain, and even chest pain. I would not have had any sort of Fitbit or anything at the time though so my heart rate would have gone unnoticed if it was elevated at any point (ie sitting, standing, etc.) and if they didn’t specifically check it then it would have gone unnoticed as well. I can’t honestly remember if they would have or not.

Either way, I think that I am getting somewhere with this finally. Considering it’s been at least 7 years according to those posts. I didn’t look much at the years in between but I know that I have been experiencing a lot of these symptoms throughout at one time or another, and sometimes they would be worse than others. It’s got me a bit intrigued and I am hoping that COVID won’t get in the way of a diagnosis, but I am scared it might.

Who is Edith?

I have mentioned my parent’s house before in my blog. The picture above is a house similar to theirs only theirs has been added onto on the right-hand side of the house (if you’re facing the house) in a couple of sections. The house was built sometime in the 1840s-1860s, we don’t know the exact date. It’s beautiful and old. I have also mentioned before about it being haunted by a woman who at the time we were told was named Ethel (or Edna, poor ghosts been called all kinds of things). I want to tell you a bit more about the haunting(s) and some stories about things that have happened in the house since they moved in. I believe I might have mentioned in a previous post about one of the earlier things that happened, however, I can’t remember if I have so if this is not new, I’m sorry

My parents moved into the house knowing it was supposedly haunted. For the first few weeks, they didn’t sense, hear, or see anything at all, and neither did we when we visited or stayed over. Within a few weeks though, they started hearing some footsteps upstairs. Nothing too alarming just steps when they knew there was no one up there, knowing the history of the experiences past owners had of the house they didn’t think a whole lot about it.

Within the first few months of living in the house, something rather spectacular happened, depending on how you look at it. My parents were asleep in the house one night when my Mom was woken up by knocking on the wall above her bed. She described it to me later as three knocks in a row, followed by quiet and then repeated. This went on for a little while becoming more insistent over time. Knowing the stories about the house Mom said somewhat jokingly “Ethel, what in the hell do you want?” After that, she said the knocking stopped for a bit. The master bedroom basically covers the whole left side of the top floor when looking at the house from the front. Their bed was against the back wall of the house at that time and the knocking started over her head, but she said it sounded like it was coming from the outside of the house. Well, that would be on the second floor.

It continued and started to move around the side of the house onto the left side of the bedroom, so Mom woke my dad and he listened and said he heard it too. Being skeptic he assumed someone was outside trying to steal something and the sound was echoing up to them. He woke up my younger brother who lives at home and they went outside and looked around, not finding anything at all. They headed back into the house and back to bed. As Dad was falling back to sleep they heard the knocking again, they talked a bit trying to ignore it but it was still quite insistent. Dad grudgingly got back up, got my brother again who said he could also hear it, it was echoing. They headed back outside again to look around and on the side of the house, they found the electricity wires going into the box on the side of the house on fire and sparking and the siding starting to melt.

My brother took off running into the house, called 911 asking them to send the fire department, yelled for my Mom to get dressed fast and get downstairs while my Dad grabbed a ladder. The fire department showed up in a few minutes as they were just down the road about a kilometer and a half, they put out the fire, turned off the electricity and told my parents to call Nova Scotia Power and an electrician before it could be turned back on. One of the firefighters asked my parents how in the middle of the night while asleep did they manage to wake up and find it and my parents said: “You wouldn’t believe us if we told you”.

The next day they moved into the house we are in now temporarily which they own and they called me and told me and my husband what happened, all of it including the knocks, the fire, everything Mom was convinced they were being warned of danger. Even my Dad seemed to think that “Ethel” the ghost was trying to warn them of what was about to happen and trying to get them to save her house and to save themselves and I have to say, I agree. After that, even Dad seemed to enjoy their housemate and talk to her when he thought she might be listening. They thanked her and things quieted down for a time. During this time they were told by the previous owner that her name was Edith not Ethel. Mom never really questioned if this was a name they were told by someone or if it was a name they gave her but we both really feel that it’s the correct name. Odd as that sounds.

More recently my parents have been experiencing things again at the house. I have also had a few experiences as well before we started social distancing. Things had settled down between then and recently however, they still heard footprints, had the feeling they weren’t alone but never felt uneasy during the time in between. Instead, they said they felt welcome and felt that there was someone watching over them and the house and felt peaceful and comfortable in the house. They have never felt anything menacing or felt overly uneasy beyond the idea of sharing the house with someone who left the world years ago. In fact, Mom said numerous times she would wake up to a warm feeling after feeling cold and more than once woke up to watch a blanket being pulled up after falling off her by an invisible hand and feeling comforted by it.

So over the last few months, my Dad has been having issues with his legs due to a slipped disk causing issues with going up and down the stairs which are steep and narrow. The upstairs landing has a small alcove, if you look at the image above which is similar to their house it would be where the window is upstairs on the front, so the stairs and landing or hall area or whatever you call it are in the middle of that section of the house and there is a low railing all along with the stair opening so you don’t fall down. The flooring is tilted toward the railing and it gives you the feeling of being in a funhouse in a fair or theme park. It’s a bit unsettling and combined with the stairs makes it unsafe for Dad to go up and down right now so they have been sleeping on the couches downstairs (which are thankfully recliners) in the living room under the master bedroom on the bottom floor. This is significant for the next part of the story I am going to tell you because if they were upstairs I don’t think they would be experiencing it.

Since sleeping downstairs Mom said she has been seeing a light shining in the window waking her up early every morning before the sun was even coming up. She described the light to me as a lantern light when she finally told me about it. It actually took her a few months to tell me. It’s been months of it every morning at the same exact time. At first, she was scared and woke my Dad up and he saw it numerous times as well and says the same thing, that it’s a flickering lantern-like light. Thinking someone was trying to break in and they scared them off they went back to sleep. After a few times of this happening, they started to realize it was the same time every morning at exactly 4 a.m. and they started feeling less afraid and more intrigued. They never told me though, not at that point. It was a few months before they finally told me about it. It’s still happening to this day but they are no longer afraid.

Before they actually started experiencing the light in the window I actually experienced something that was outside the window on the lawn when I was in the kitchen downstairs, which I never told them about as I thought my Dad was uneasy about everything and because my brother gets really freaked out by some of it, so I kept it to myself. Over Christmas Edward and I stayed a few nights. The night before Christmas Eve I woke up in the middle of the night to use the washroom. I don’t like the one upstairs, it’s small, claustrophobic and I have to walk the part of the landing area I don’t particularly like to walk on so I usually go downstairs to the one down there.

I went down the stairs, across the kitchen, and turned the kitchen light on. The bathroom downstairs is off the kitchen which is on the right side of the house under my brother’s bedroom and the spare bedroom we sleep in when we stay there for the night. It’s in one of the add-on parts to the right of the main original part of the house and so I used the washroom, left, turned the kitchen light off, and turned towards the front window in the kitchen and out on the lawn out front was a floating light. It looked like a lantern, I say this because it was more yellow then white which a newer led flashlight would be, it was flickering like a flame but also bouncing up and down while basically going across the lawn.

I never really thought much of it and just sort of shrugged it off. No one else at that point was mentioning having any experiences other than the footsteps, which I had heard as well, but stuff like that never bothered me as I experienced it before when we lived in Germany and also when we lived in my grandparent’s house on Digby Neck when I was in high school. I’ll tell that story and some other ones another day. On the property behind the house there is a path down through the backyard, then woods, then a field and down to the beach. I think they mentioned it’s a little over a kilometer. Over the summer camping there I found the woods sometimes I felt like I was being watched but again I never really felt more than slightly uncomfortable. I still felt and I think we all feel that whatever presence is protective extends out there even if the actual spirit can’t.

It wasn’t until about 2 weeks ago when Mom and I were having a conversation that she finally told me. The day before she told me about a dream she had one night a few weeks ago. I don’t remember the exact conversation but in the dream, there was a poem and when she woke up she felt she needed to write it down, so she did:

RAY OF LIGHT

He came to me on a ray of light
He came to chat in the middle of the night
He came to say God needs me home
Where God needs me I will roam

He took me home on his wings of white
All the way on that ray of light
To see my family again at last
All of them who have previously passed

Mom and Dad were there
And my brothers too
With open arms
That said we all missed you

Smiles and hugs all around
Love and joy did abound
God said you have family here
But your earthly family also cares

If you feel they need you still
It can be arranged with your free will
I had the choice to stay or go
My earthly family still needs me so

I still had things to do down there
Before my time on earth was done
He said the choice was mine to make
All the time I needed I could take

I hugged my family and said goodbye
My time left on earth would surely fly
He took me back through the ray of light
To my earthly home on his wings of white

To finish what I started there
And for my earthly family to prepare
For my journey on earth would soon be done
And I would then be in my heavenly home

At first, the night she sent me the poem I was concerned about her. I thought it was about her as she has two brothers in heaven but no sisters. Her sisters are alive and both her parents have passed on (third paragraph). I don’t know what I thought but it didn’t sit right with me at the time. Then the next day she told me about what was happening at 4 a.m. and what she thought it meant and that Dad agreed with her and that they both believe that the poem was not about Mom, that it was about her, about Edith. I’ll go into that a bit more near the end.

They believe that the person or spirit outside the house is likely the husband of the woman inside the house and is looking for her and that they either don’t know each other is there or that they can see each other but can’t interact for some reason or something similar. They have the feeling they both want to. It kind of fits with stories we have heard from the previous owners about a Sea Captain and his wife. That his wife passed away while he was out to sea and she was put in a shed waiting for him and for the ground to thaw out as it was winter. A common practice in the Maritimes at the time they would have been alive.

Mom did some research on a genweb website for the area and found some couples who she believes lived in the house or on the property around the time the house was built and one of the women was named Edith, her husband William. I was able to pull up quite a bit of information on the couple with Ancestry.ca and Ancestry.com as well as some other sites including the dates they were born, their parent’s names, and addresses. His parents actually correspond with the right timeframe the house would have been built and are listed as living at what would be the address now. Her parents were from the next community over and she was born there and married him in their early 20s in a church close by. After that though, it doesn’t quite seem to fit as they moved to Massachusetts.

She died in Massachusetts in her late 40’s leaving behind 2 young kids. He didn’t die until his 80s also in Massachusetts. There is no record of where she was buried even though there are records for him and both children as well as a baby they lost in between the two children, all buried in Massachusetts except her, or at least as I said there is no record of her being buried there that I can find. Somehow it makes Mom and I both wonder if she was sent back to Nova Scotia for some reason for burial. William’s brother got the property we believe is Mom and Dad’s house. We are wondering if she was sent to be buried on the land or maybe her parent’s land or a cemetery here. I plan to go looking when we finally can get out.

I don’t know why but I really think we are onto something but at the same time, there are a lot of things that don’t quite fit. Mom feels the same. As mom said she felt the poem was about Edith, in fact she said she feels Edith gave her the poem. I didn’t mention it above but after Mom told me she wrote it, that it was not a poem someone else wrote but that she wrote based on the dream I literally looked the poem up line by line on google trying to find it, trying to find proof that someone else wrote it. I couldn’t find anything at all. It appears she did write it, or Edith did. Of everything, it’s the one thing that really unsettles me. It’s a beautiful poem but at the same time, I did not want it to be about Mom or Edith, who at this point feels like family, and interestingly enough we did find out that the Edith we researched is related. So maybe there is something in that?