I haven’t been able to write much in a quite some time. Right now I’m having a Spravato (esketamine) treatment so I’m a bit intoxicated, but I’m pain free so I can type. However, since I’m intoxicated this post will probably have lots of errors and may sound a bit strange. You have been warned. Bwahahahaha
My hands have been hurting a lot because of the nerve problems coming from my neck. It’s not up as high as it was, but it’s close, really close. That makes it hard to type, impossible to write, and very difficult to text. I’ve resorted to using talk to text, and you know how that cam mess things up. Not being able to easily communicate well with the outside world is hard.
I’m not sure where I left off last time, so forgive me if I repeat anything or leave something out. If you have questions be sure to ask.
We are still trying hard to regulate my blood pressure (BP). I started this journey with one doctor, but changed to another PCP since the first one didn’t seem to take this seriously. My new provider is a nurse practitioner in the same office as my last doctor who moved away. I really like her and she is working hard on this BP issue. It will be dangerously high one day and then normal or low the next. That’s hard to treat, so I’m going to have a 24 hour blood pressure study next Tuesday. I’ll be fitted with a cuff that stays on for 24 hours. I’m not sure how often it will take my BP, I read online that during this test it normally takes it every half hour during the day, and every hour when you’re asleep. Not sure how much sleep I’ll get with that thing on. I just really hope this answers some questions.
There are 3 reasons that my BP has suddenly risen:
One is my Spravato treatments. During the treatment my BP is supposed to go up temporarily, then come back down afterwards. In rare cases your BP could rise and stay up there.
Two is my chronic pain, this is actually what my new provider thinks it could be; I take my BP first thing in the morning, before I even get out of bed, and it can be dangerously high when I wake with severe pain. Mornings are high pain times. I did read a study that said chronic pain can cause hypertension. That’s sad. It’s bad enough that we have to live in pain, now we also have to worry about our BP! Ugh!
Three, it could just be genetics. Not sure I buy that one. My mother didn’t have hypertension. My father had it later in life, but he didn’t take care of himself. He was overweight, and ate way too much sodium. I am not overweight, and I have been on a low sodium diet for many years because of the Meniere’s.
Another subject, well kind of… The pinched nerve in my neck is causing my hands to hurt terribly. And the Spravato is on the down swing so my pain is coming back…damn! Normally I get a couple of hours pain free at least. This time it was only about 30 minutes. I’m getting so discouraged. All this pain! The nerve pain, the migraines, the muscles in my back…I do not know what it’s like to not live in pain! I thought everyone had some sort of pain all the time, but they don’t! Some people have no pain. That blows my mind. When I do a Body Scan Meditation I realize that I have pain in almost every part of my body. I accept this is the way it is for now, but I also know that life is constantly changing. Just because I accept what is happening to me doesn’t mean I have given up, it just means I’m not using more energy fighting it all the time. I accept it’s there, that doesn’t mean it’s always going to be there.
I have been using the backspace key much more than any other key today. Constantly seeing errors and trying to fix them. I’m sure I haven’t gotten them all. Hell I can barely focus on the screen to see what I’m typing.
I had a virtual appointment with my headache specialist last week; she wants me to go to a headache clinic, either Diamond Headache Clinic or Jefferson Headache Clinic. The first is in Chicago, the second is in Philadelphia. What a long trip that will be. Mayo in Rochester is also an option. Evidently the Mayo near Phoenix isn’t that great with migraines. Go figure. We are in the process now to get me in one of them. It’s a long process and I’m afraid I might be going in the winter. I live in the desert, I do not like cold, nor do I have clothes for it. But I sure don’t want to wait until spring to break this damn migraine. the pain has been so severe.
I had a panic attack last week. That was scary. I really feel for people who have then often. They are relentless and illogical. I was terrified, but I had no reason to be. I have all these tools to help me get through things like that, but I couldn’t even think about how to do them. Luckily S was there to remind me to breathe. He had a few panic attacks last month, that was hard to see. I felt so helpless, even though he told me I helped him a lot. He told me during my attack, “At least I can understand now”. And now I understand how hard it must be on him to see me in pain all the time. Especially when I have vertigo with it. And more.
Well it’s about time to pack up and leave the treatment center so I guess I should close for now.
Seems like there was more I wanted to share, but I’m out of it. Not just because of the Spravato, I’ve been a bit out of it all the time lately. The migraine symptoms are in full swing.
Oh! It has been raining! So excited we are actually having a monsoon season this year! We had no rain last year, and the plants have really suffered. I’m sure the animals have too. We had more rain in one day this year than we had the whole year last year. The past two years have been very dry. With this much rain, we might have a super bloom (wild flowers blooming everywhere!!) in the Spring.
I hope all are well. Tell me how are you holding up?
Remember, I’m posting this without reading it or editing it, please be kind.
I’m so tired of this f’ing migraine! Each night I go to sleep hoping that I won’t wake up with severe pain, and other symptoms, from a migraine, Each morning, I’m not surprised when I do. Yet, I still hope. At least it’s not the extreme nerve pain! I used to think I knew what a 10 was on the pain scale, but I didn’t. Now when I have a migraine that I feel is creeping up to a 10, I remember that nerve pain, and thank the heavens it’s not like that. But does that really make the migraine better? Or does it simply down play what it’s like? Am I negating my own pain and feelings about it?
Often when we have pain or a bad experience we will say, but I know others have it worse. Does this make what you have experienced better? Does it help you in any way? Or does it make you feel like your feelings aren’t valid? Like you shouldn’t feel the way you do? That’s simply not true. When you have negative things happen in your life, it causes strife. sadness, anger, anxiety….. These feelings are natural, and they need to be acknowledged. You aren’t helping yourself by pushing them away. Yes, others may have it “worse”, you can feel for them, you may even be able to help in some way. (giving to charities, listening to a friend, validating their feelings….) But it doesn’t make your experience, or feelings less valid. Be gentle with yourself. Acknowledge your feelings. I’m not saying you should wallow in misery, simply understand that you are worthy of your feelings, and you need to deal with them instead of feeling like you shouldn’t feel this way.
I feel angry, sad, and simply fed up with being in pain all the time!! I have been judging myself for having these emotions. Not only because I feel others have it worse, though that thought has crossed my mind (multiple times), but I try so hard to live in the moment without judgement. I know others look at my strength and think I handle things so well; I don’t want to be a disappointment. I want to be a good example of how a chronically ill person can handle things with grace and a love of life. Lately, I just feel overwhelmed, and consumed with pain. I haven’t been supporting my friends, posting on my blog, or doing much of anything except sitting in my chair in the dark, hurting. It’s boring, and it’s sad.
I may need to increase my Spravato for a while, but I really don’t want to do that. It’s nice only going once a week, I was even hoping to cut it back to every other week. I see now that isn’t possible, at least not yet. I’m so very grateful for the Spravato treatments, but every Friday is taken up by this. The treatments last 2 hours, 3 if you count travel time, heck it’s more like 4 because there’s always getting settled in the room, and getting ready to leave….. all that kind of thing. Then there’s the aftermath. I often feel a bit intoxicated the rest of the day. So that’s a whole day dedicated to Spravato. But, I guess, that’s a small price to pay for my sanity. I’m so grateful I’m able to get these treatments. It breaks my heart that others can’t get the care they need. (but that doesn’t mean my feelings about it are less valid)
There have been many times in the past couple of weeks that I’ve considered going to the ED (Emergency Department, aka A&E, Accident and Emergency, or ER, Emergency Room) for my migraines, but I couldn’t bring myself to do it. My last visit there was so awful. Waiting over 6 hours in a busy ED with a migraine, having a seizure in the waiting room and no one noticed….it was bad, something I never want to do again. S said he’s not sure I’d go even if my foot had been cut off. hahaha, I promise I’d go if that happened! But he has a point, I do avoid the ED if at all possible. Here’s an article that tells you when to go to the ED, Urgent Care, or call your provider: https://medlineplus.gov/ency/patientinstructions/000593.htm . You can see in the list that it says to go to Urgent Care for a migraine. Yet my headache specialist has told me many times to go to the ED. I also don’t want to be admitted. I hate being in the hospital. The last two times weren’t helpful anyway.
Dang it, I just at a couple of hours ago and I’m hungry! Food is a necessity, I do get hungry and I eat, but it’s not something I look forward to any more. My stomach has not been happy lately. I’m nauseous most of the time, I often have a stomach ache, indigestion, acid reflux…..let’s just say, I’m keeping Pepto in business. I’m going to eat now, I’ll finish this up later. I have many things I want to get done today since I can. It hurts, a lot, but I’m not having vertigo! That’s a plus!
I haven’t mentioned here that I have a “job” now. It’s not really a job, since I don’t get paid in money, but it does bring in a lot of things we need. I was asked by a major online retailer to do honest reviews in exchange for the products I’m reviewing. I get to chose the things I review our of thousands of products. I get what I need, well some things I simply want. It has been a great help since S’s salary was cut when he had to change jobs due to the pandemic last year. So I need to do a few reviews today. I’m a little behind because the pain has caused me to not be able to do much of anything.
I will break down and take meds for my migraine today, even though I’ve taking it twice this week already, because I’m getting my hair cut! I haven’t had a hair cut since February 2020! I’m so grateful a good friend is a retired stylist and has agreed to cut my hair. My regular stylist retired during the pandemic, and I don’t want to go to a strange person right now.
How are you guys doing?
Do you miss me on Picnic with Ants? I kind of miss my old blog. It saw me through a lot. I’m thinking about going back and opening it up again, what do you think?
This is my first post on this blog. This blog is all about my day to day life with Meniere’s and Migraine, and any of my other chronic pain/illnesses. Please check out my About page to learn more.
Today I had a virtual appointment with the PA at the pain clinic I go to. I’m a bit unnerved by it. I had epidural injections on January 22nd that did wonders at helping my nerve pain. The symptoms started to come back last month so I had another on April 22nd. Now that one isn’t working. The pain isn’t as high as it was….yet. It will most likely get back up there if something isn’t done. Before this nerve pain hit, I couldn’t even imagine pain that intense. I’m honestly terrified to have it happen again, and it’s starting to get up there already.
The PA suggested I have a myelogram. That’s basically a lumbar puncture with contrast to show any problems with the nerve roots, spinal column, and other tissue. He also said I may need to see a neurosurgeon.
I’ve had a number of lumbar punctures (LP) in the past (10 LPs plus patches for cerebral spinal fluid leaks). I’ve even had a couple with contrast. But I’m still nervous. The LP’s I’ve had in the past were done by a world renowned neuro-radiologist at Duke University Hospital. When I expressed my concern the PA told me that the doctor who would be doing this LP is also a neuro-radiologist. I tried to talk with him more about this, but he never shut up. He would talk over me constantly. I realize I do that to others sometimes, but I can’t hear. I often simply don’t know when someone is talking to me, he doesn’t have that excuse. I’m grateful my husband is always there to hear all the things I miss, or translate for me. I feel like this guy does it so patients won’t take up too much time chatting. I think that’s just sad. I’m one of those people who looks up everything and is very knowledgeable about my medical stuff, I feel bad for patients who aren’t like me and don’t get their questions answered. I hope they are more assertive than I was.
I had a little breakdown after the appointment. I try hard to accept things that happen to me and just move on with life. This pain isn’t something I can accept. I know I can’t live with that pain on a day to day basis. I do not say that lightly. So now I have a worse migraine than the one I woke up with. I never thought I’d say this, but I’d happily live with this migraine pain every day of my life if I never had to experience this nerve pain again.
I don’t know when I’ll get the appointment with the neuro-radiologist, hopefully soon.
Thank you for joining me on this crazy ride that is my life.