It’s 7:34am and I’ve already been up for 2 hours, that wouldn’t be so bad if I’d gotten to sleep before 1am. Waking up at 5:30 with horrible head pain is not a good start to the day. And taking Migranal nasal spray is not the best thing to taste first thing either. But my head is better.
It’s monotonous and down right boring to have a migraine for well over a year now. Every day, pain. Every day, nausea. Every day, sensitivity to light, sound, and smells. Every day, another day, same shit. It only changes in intensity, but it’s always there. I’ve had a constant headache for 47 years, but it’s only been since April of 2020 that it’s been a migraine. The persistent headache I always have, is different, and thankfully not nearly as painful.
I do have hope though. I have a virtual appointment with Diamond Headache Clinic on the 9th. They will then determine if I need more tests here, or if I need to be admitted. Everyone is expecting admission. I just want them to be able to help.
I was thinking they might try ketamine, but with my blood pressure issues that’s not going to happen. I don’t know if I should be sad, or relieved. I’ll only be sad if I found out that’s the only thing that would help.
My blood pressure is still out of control. I had a 24 hour blood pressure monitoring test on Monday. I’ll hopefully find out the results later today. However, I saw some of the readings on it and it was often way high. The highest I saw was 201/101. That’s scary high! I probably should have gone to the ER, but I hate it there. And I was afraid the stress of going would make my BP rise even more.
I’m going to skip Spravato this week to see if maybe it comes down a bit, but I’m not hopeful. I feel like I’m either going to die from depression, or high BP. I really don’t want to die from either.
More good news about Diamond Headache Clinic, they just called and said since my out-of-pocket maximum has been met then this whole thing will cost us nothing! Woo Hoo! Since Stuart is allowed to say with me in the room, we don’t even need to have a hotel room. We’ll need to find out if there’s actually a bed in there, or if he has to sleep in a chair, if it’s a chair, I’d rather him have a hotel to get some rest in. We’ll see. We will need a room for a few days after I get out, I’m really hoping to see a couple of people while I’m out that way. That would make the whole trip even nicer.
I was starting to see some people in the neighborhood, but I’m not sure how much more that will happen with the rise in COVID starting again. Almost all seemed to feel that after being vaccinated they were “free”, hardly anyone wearing masks, even inside. I admit I felt the pressure of going without mine. It is so much nicer because I can now see people’s lips, but it’s not worth putting my, or others, health at stake. The variant D strain is worrisome. Children are supposed to be more likely to get it, and the little ones can’t be vaccinated. I’m really worried about them all going back to school and so many schools don’t have mask requirements. I feel so bad for them, and their parents. The vaccinated are only 80% protected from it. I’m in that little margin in so many other things, I don’t feel like I should risk it at all.
I saw my therapist yesterday and she had some scary news. She knows 3 people who have COVID right now, who are vaccinated. One is asymptomatic, the other two have slight symptoms. The two with symptoms went to the doctor when they started to feel bad and that’s the way they found out. The two with symptoms were at a gathering before so all had to be tested, the third person found out that way. Unfortunately, the morning before she found out she had breakfast with my therapist. So she had to get tested, and had the one that takes a few days to get back to make sure it was more accurate. She said it was a long 4 days.
I’m jumping all around here, but here’s something else, I don’t think I’ve talked about yet. My doctor is testing my adrenal function. Unfortunately, LabCorp is backed up due to COVID tests so I can’t get my test done until next week. Anyway, come to find out a tumor on your adrenals can cause sudden high blood pressure, increased anxiety, long lasting headaches, and weight changes. So we have to rule this out. Stuart and I are actually hoping I have a benign tumor they can just remove and make me a new woman! Ha! As if anything is that easy with me.
Well, Stuart just heard from the doctor’s office and my test results are there so I need to get clean and get dressed.
I’d love to hear from you all, shoot me a comment to let me know what you’re up to.
The photo above was taken by Stuart on one of his morning walks this week. It’s amazing! Saguaros don’t bloom this late. I guess it’s a late bloomer. Maybe I am too. Maybe it’s simply taken a long time to find ways to help me feel better, and I can start to bloom soon.
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?
Did you know that each bloom on a saguaro only last one day? That’s just amazing to me. They are so beautiful in full bloom, and they bloom for quite some time. I hope to get more pictures soon when the sky is not so hazy. It’s really windy and dusty here right now. Temps in the 90’s. Soon they will be much higher. We had very little rain this past year, I’m afraid that will mean more wild fires. I sure hope not. I don’t think there’s much more of the mountains around here left to burn. It was a bad fire season last year.
I saw that amazing cactus above as I left my doctor’s office on Monday. I was there to discuss my blood pressure. I have gone from having hypotension to hypertension. It’s very disturbing to me. Really scary after having the vein in my eye explode. I had the shot in my eye on Friday. It really wasn’t as bad as I thought it would be. I didn’t see the needle at all. I’m still not crazy about the doctor, but he did a good job and that’s all that counts, I guess. He could have better bed side manners though.
I started on blood pressure medication yesterday. She said it will take up to 4 weeks for it to show it’s full effects. I sure wish it worked faster, I’m not comfortable with my BP being so high for so long. It was 165/100 last night. It caused an awful headache that medication didn’t help with. It brought it down just a little bit, not enough to make me feel better. I’ve also been very nauseous. And last night I had a nose bleed. It didn’t last long, and I’m not sure if it was caused by my BP, or the medication I used. (it’s a nasal spray) It’s lower during the day and rises as the day goes on. My doctor said that’s not unusual. And she said that the medication she put me on could help my migraines. If that’s the case this whole thing could be worth it. LOL
We don’t really know the cause of my high blood pressure. It could be a side effect from Spravato (esketamine) that I take for major depressive disorder. Since other medications have failed, I need to continue with this medication, so I’m not going off of it. Plus this could be genetics. My father and sister had/have high BP, but they were/are high risk people. Overweight, don’t eat right….you get the picture. So it just happens sometimes. I hope it will just unhappen. The thought that I’m now more likely to have heart problems or a stroke is unsettling. I need to be diligent about taking my meds and taking the best possible care of me. First I’m going to start getting more exercise. I already eat pretty darn good, but I’ll try and have less “treats”, and watch my sodium intake a bit more. I normally eat low salt anyway, but I haven’t been really checking to see how much sodium I’m eating since I tracked it for so long. My doctor actually told me I was cutting out too much, so I stopped being so diligent in paying attention to it. I still don’t think I’m eating too much though. I don’t eat out a lot and that’s where a lot of sodium comes from. At least for me.
That’s all for today, I have to run to an appointment so I wasn’t able to proofread this, I hope it’s okay.
I hope you all are having the best day possible for you.
I have migraine with and without aura. Often when I have a migraine I will loose vision in one eye, or it will go dim. So when I had a shadow show up in my left eye I thought it was a migraine, but it didn’t go away. So I saw an eye doctor and they sent me to a retina specialist to find out what was wrong.
I have Branch Retinal Vein Occlusion (BRVO). Here’s what the Amirian Academy of Ophthalmology says about it: “Arteries and veins carry blood throughout your body, including your eyes. The eye’s retina has one main artery and one main vein. When branches of the retinal vein become blocked, it is called branch retinal vein occlusion (BRVO).
When the vein is blocked, blood and fluid spills out into the retina. The macula can swell from this fluid, affecting your central vision. Eventually, without blood circulation, nerve cells in the eye can die and you can lose more vision.”
It was really weird to see the blood in my eye on the pictures they took, but you can’t see anything when you look at my eye. My eye looks normal. It was one part of my body that has been normal. I do wear glasses, I am extremely near sighted, and I need reading glasses since I got older. I can see very well if things are very close to my eyes. Glasses have always corrected these issues. They are pretty normal. But BRVO isn’t normal. A friend of mine described it as having a stroke in my eye. That’s actually about right. She then said, “with the amount of pain you’ve been in, I wouldn’t be surprised if you had a stroke” (I’m paraphrasing really, but that’s the jest of it) Dang! That’s a sobering thought isn’t it?
The specialist told me it happened because I have high blood pressure. But I don’t normally have high BP. Yes it was high in his office, but who wouldn’t have high BP if they thought they might lose their vision in one eye. Since I’m deaf I really depend on my eyes. I cannot imagine what my life might be like if I couldn’t see.
I hope it is BP related, because if it’s not, they won’t know what caused it, and they won’t know how to stop it from happening again.
We called my primary care provider but I couldn’t get in until Friday, the same time I have to go back to the retina specialist, so I have to wait until Monday to see her. I have some propanolol at home, it was prescribed to me to help with akathesia (feeling like you need to move all the time), but it’s also a BP medication and it’s prescribed for migraine prevention, so I started taking it this morning and I’ll just tell my PCP that I was afraid I’d lose my vision in that eye, so I had to do something. I’m fine with trying this medication since it may help my migraines, but I still don’t think I have uncontrolled high BP. I have my BP checked every week, last week it was 126/71, that’s really not high enough to be concerned about. They say that normal is 120/80 or less, so that’s pretty normal.
I am on Spravato (esketamine). I have it once a week and have to have my blood pressure checked 3 times each time. It can cause your BP to rise for about 4 hours. I wonder if this is what caused the BRVO?
I have to go in on Friday morning and have a shot in my eye. I’m very nervous. I’m trying not to think about it, but I just can’t stop. But I have to say, mostly I keep thinking about him being so dismissive of anything I said. I tried to explain that my BP isn’t normally as high as it was there, 138/99, but he wouldn’t listen. He just said that 95% of these cases are caused by high BP. What if mine isn’t? My blood pressure seems to have been going up and down for the past year or so. It’s normally about 120/70…give or take a couple of numbers. I used to have very low BP, they often had a hard time getting it. I’ve even broken some of the automatic machines, they just couldn’t read it and they’d end up pumping too much air in there. It wasn’t very comfortable either, it actually hurt like the dickens. Now I’m seeing these high numbers I never thought I’d see, but other days it’s really low, like 85/60.
Did I mention I didn’t get a good feeling about the doctor? He was in such a hurry, I understand they worked me in at the last minute, but dang. Take the time to really talk to your patient. He did not know how to deal with a person with difficulties hearing. And he told me to take my mask off because he can’t see my eyes with it on. Ummm, really?? If I wasn’t fully vaccinated I wouldn’t have done it. But I was hot and having a hard time breathing, so it was welcome really…until I thought about it afterward. I know the nurse I talked to was vaccinated, but I don’t know if he was. Did he do that to everyone over the past year? The eye doctor who sent me there had no issues with my mask. He’s weird. And he was very abrupt when I was he said he had to give me a shot, I said, “In my EYE?” He said, “It’s either that or lose your sight in that eye.” That was the first time someone told me that was even possible. Is that the way you’d like to be told? Would you feel the slightest bit reassured by that? If I felt I could put this off I’d try to see someone else. I’m going to try to give him the benefit of the doubt, and just say he was overworked that day.
I talked to my neighbor who has macular degeneration to see if she’d ever had a shot in her eye. She hasn’t but she knows numerous others who have, and she’s been told it doesn’t hurt, but one lady said she felt like she had a piece of dust in her eye for a day or so. Okay I guess I can handle that. But how do I deal with seeing a needle coming at my eye?? Gives me the whillies just thinking about it.
My anxiety is high.
I’m definitely taking migraine meds before my appointment on Friday…..and a valium.
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.