Tag: vertigo

Muddling along

On By WendyIn Chronic Illness, Disability4 Comments

There’s really not that much to update, but I’ll try and tell you all what’s going on.

I added to our complaint about how I was treated in the hospital, I was upset when that wrote me back saying they couldn’t fine my original complaint. At least they wrote me back, perhaps I’m now in touch with people who can make a difference. It’s upsetting that I had to say I felt my disability was ignored before I got the attention of someone. Yes I am considering writing to the States Disability board who enforces the ADA (Americans with Disabilities Act) We are now in the process of writing our a letter that will be sent to the hospital and Medicare. I haven’t contacted the state about my disability being ignored before now is because Medicare often takes care of that. We will then be sending the letters by registered mail so we get a signature that it was received

This has been incredibly hard on me since I do not remember a lot of my hospital stay. I don’t remember the first time I was going to be discharged before I was ready to be. However, I do remember the next day when I was forced to be discharged before we knew how the opioid they had just given me would react with me.

Forgive me if I’m not saying all of this with the proper grammar, I’m still incredibly upset about it all. The email I received stating they had no record of my original complaint has been a huge trigger. I need to get all of this resolved. I’m trying very hard to be a good advocate for myself. People do not understand how very hard that can be.

I have felt that my migraines have been less intense. About once or twice a week I had one that is untreatable no matter how much medication I throw at it. But I’m having Yellow days most of the time. (explanation of the traffic light system for rating migraines can be found here) That’s a huge difference. I don’t know if it’s because of the reintroduction of Botox, the nerve blocks, or the increase in medications. Which ever it is, I’ll take it. I just hope it gets better and better, all Yellow and Red days is simply unbearable.

I’m having some huge cravings for sweets, I don’t normally have that. It’s weird and it’s bothering me… it freaks me out to gain weight after I lost so much. I’m trying hard to eat as healthy as I can, but it’s even harder when I’m not able to cook for myself, and I’m tasting things differently. Foods I normally love just taste weird. That can be a side effect of one of my meds, but it’s crazy that my oatmeal and butternut squash taste odd. Why can’t sweets and fried foods takes weird? I really try not to eat either of those, but lately I’m not succeeding all the time. I’m also much more constipated than before, I can’t help but this is also a side effect.

We’ve had a lot of unexpected expenses lately. Plumbing issues, needing to replace the AC in the casita. I sure am glad we have an emergency fund, but it will push back being able to get the yard landscaped, and replacing doors and blinds. That makes me a little sad, but it won’t be put off forever, and we can still get some of it done. (crossing fingers)

I should close now, my head is ramping up and I’m almost finished with this Spravato treatment.

Hope all are good out there. I’m not getting email notification when most blogs post so I need to take the time to check on you all.

Hope you are having a spooky season.

Never Again! Ketamine, and hospital bullying

On By WendyIn anxiety, Chronic Illness, Health Care6 Comments

This post may contain triggers for some. It talks about bullying, hospitals, trauma. Please take care of yourself first.

This Ketamine treatment was nothing like the first one.

I will never go though this again….NEVER.

I don’t remember anything real from the time they started the infusion until shortly before we left. I hallucinated the entire time, or maybe just lost time…who knows. Yet S tells me that I seemed lucid at\times. I knew there was a chance I could have hallucinations, and dissociate…but this was beyond what I ever expected.

I’m told I was having incredible abdominal pain…this happened last time, but only on the last day, but it was shrugged off as GERD. I received Mylanta and was discharged. I ended up in the ER two days later with severe pain and diarrhea that had been happening since I got home from the hospital. I was given a CT scan and test were taken, I was told I didn’t get any of the bad bugs (like Cdiff) in the hospital but they thought I did get something there. So I was put on a liquid diet for 2 days, followed by a bland diet for another two days, I was also given Dilaudin (a synthetic opioid derived from morphine) in the ER. All of those things relieved it.

This time I had severe pain during my treatment, again waking up screaming, and vomiting this time….I remember none of this. I was given meds, I don’t know what, but it didn’t help much. Again they wanted to discharge me (more about this later). I ended up back in the ER the day after I got home. First I was given Morphine, but it made me itch so much, it’s really hard to deal with intense pain and itching at the same time. I was also given two other medications, dilaudin, and haladol. The pain was so very intense. They actually thought I had constipation with the diarrhea. What? Who’s heard of such a thing? She said it showed on the CT scan, it also showed some “irritation and inflammation”. There is some condition called called paradoxical diarrhea or overflow diarrhea. It happens when watery stool leaks out around hard stool in the rectum. Have you ever heard of such a thing? I sure hadn’t. I don’t understand that, I was having regular BMs before the diarrhea. She wanted to admit me to give me a laxative to see if it helped. I was not willing to do it. I could do laxities at home. She also suggested a bland diet. I also took a stool softener, and magnesium oxide, and have had normal BMs since. I still don’t believe I had paradoxicol diarrhea. At least that part of me is fine. I am still having some stomach pain, but nothing like I was having. I’ll discuss it with my new PCP on the 16th. I’m so grateful I was accepted by this PCP, she used to be a headache specialist at Jefferson (a very prestigious headache clinic) so she is better suited to work with my doctor at the clinic in Phoenix, so I may not have to go there to get some treatments. This office came very highly recommended to me, by another doctor of mine. I hope they really are as good as they say.

More bad stuff

Okay so that was part of the horror of the ketamine. Although some of the visions were interesting. I had to have a catheter many times. They said (according to S) they don’t like to leave it in because you are more likely to get an infection. But the visions that came with it…it’s hard to explain. One of them I saw women surrounding me in ceremonial garments. I was the center of some ceremony. It was strange, but it didn’t scare me, I felt like I was in a place of honor. Other times I did not have good visions. I I wasn’t sure what was going on, I felt violated. I still do. I had no say in what was happening, how can you not feel violated when people are sticking things up your urethra when you are out of it?

There was also a time that I thought there were two Stuarts. One was on one side of the bed, the other was on the other side. It was so strange. I told him I had to smell him to make sure he was the right Stuart. I got very agitated by the second Stuart, he didn’t smell right and was very jealous of the real S, but I had the right one there so I wasn’t scared. S told me I talked about gnomes a lot, that’s interesting, but I don’t remember it.

I’m told when I was hurting so badly I called out for my mother. She died 29 years ago. I still miss her so much. I do always wish she was here to help me through this, help us through this. I’m just so very grateful I have Stuart, and I have such good memories of my mother. I was thinking how hard my life has been, so very hard. How could I be so unlucky? Then I realized I’m one of the most lucky people in the world! I have an amazing husband to help me through this. How could I be unlucky?

I’m getting way off track, as usual, at least that was a good thing….. so let’s get back to this traumatic hospital experience.

First Discharge attempt:

The day after the ketamine was stopped I was set to go home. We were all packed and ready. I was getting in the wheelchair and then said, I don’t think I should leave with so much abdominal pain. The nurse from hell tried to force the issue, then I had a seizure. Other nurses and a doctor came in and said I wasn’t going anywhere. I don’t remember any of this. None of it. How could I have felt like I was ready to go home, with the only symptom abdominal pain, and not remember any of it? After the seizure S told them that the seizures happen when I’m under an extreme amount of stress. It hurts me that I’m having psychogenic seizures again.

Being forced to leave:

The next day they gave me Dilaudin to help with the pain. They finally listened to Stuart. Shortly after the nurse came in with my discharge papers. Stuart said he wanted for us to stay for another 30 minutes to make sure I didn’t have a reaction to the medication. We thought that was all there was to it. I was eating my lunch when suddenly the nurse from hell and an entourage of other nurses and a HUGE security guard came in to escort us out. They had “patient belongings” bags and were ready to throw my things in and forcefully make me leave. I was very concerned and agitated. I kept saying I didn’t understand, why couldn’t I finish my lunch? Why was this happening. No one would answer me, so I got a little loud, I didn’t scream or anything, I just wanted attention since I can’t hear I thought maybe I was missing something. S was busy getting our things in the suitcase so he couldn’t be that help, I doubt they would have said much for him to translate anyway. When I raised my voice the security guard came over to my bed and loomed over me, I shouted to him “I’m deaf and do not understand” it was obvious he didn’t believe me. The nurse from hell tried to touch me to get me in the wheelchair, I did forcefully tell her “Do not touch me”. I got in the chair myself. I did keep saying that I didn’t understand. While we were waiting for the car….yes they all waited to make sure we left….I turned to that nurse, she was the closest person to me…and said I wanted to see who was in charge. She said she was….she was the charge nurse, but she was far from who would be in charge. I told her I wanted to know in writing why I was being treated that way. She said, “it’s been noted”. I asked for her name and she wouldn’t give it to me. I also felt like they put people between me and Stuart so we couldn’t bond together. They rushed me out so fast I didn’t have my mask, and the charge nurse evidently didn’t have hers on since I could read her lips. I am sure that the whole process lasted more than 30 minutes, if you include the time before they came in. Why did this happen? Bullies, that’s all they are….Bullies.

I will NEVER be treated like that again! I will refuse to leave until I at least get the people’s names. We made a formal complaint, I’m sure nothing will come of it, but they can’t find out what the security guard’s name is. I don’t want anything like this to happen to anyone else.

Another strange thing, I was told that a doctor came by that morning and I told her I was ready to go home. She’s the one who ordered the Dilaudin, they finally listened to Stuart, then said I could leave. She’s my headache doctor’s partner, so I do trust her. But I don’t remember any of that. I really don’t remember anything until I was eating lunch. It’s like my brain shut down because of the pain….or the ketamine really hit me hard….I don’t know. Stuart is concerned that I don’t remember the last two days after I was off ketamine and was ready to leave. I do remember every bit of those people forcing us to leave. They didn’t even ask, they didn’t come in and say that they couldn’t allow me to stay any longer….for whatever reason…they just came in and started to pack up my stuff and forced me out.

I’m now having nightmares. It’s hard for me when I go to bed, even when I’m not sleeping, I can feel that security guard looming over me. I can feel the hate in his and the nurse from hell’s eyes This is one of the most traumatic things that have ever happened to me. I’m very afraid the seizures will become a regular occurrence again.

I’m trying so very hard to not think about the past, I know it’s over and I’m safe….but ,my body doesn’t seem to know it, it is fighting hard. I’ve lost all hope. I keep telling myself that’s not true, but it is. I was certain this treatment would help. And it did the first time, until I fell. I was outside in the sun without my hat! I had so much relief. I did feel like it was helping my migraines at first, but the trauma those people caused, I believe that negated every good that the ketamine did. Now what? The only other thing I know of is lidocaine infusions, but I don’t know if I can go back in that hospital. I’m also jumping the gun, who knows what else my doctor has up her sleeve.

I’m trying so hard to be mindful. S keeps trying to get me to stop and really breathe. That has always helped before, and it really helps him. But right now, it isn’t very helpful.

More Horror:

The night after the ER visit I started having akathesia, this happened last time too, so I was prepared with medications from my psychiatrist here. she helped before. But it didn’t work. I was pacing so much! I was anxious. I couldn’t be quiet. The only relief I seemed to get was in the bathtub. I took 7 baths in less than 18 hours. Crazy huh? My psychiatrist increased the dosage on the meds and I finally started getting back to normal. I was to take them for 3 days, when I tried to stop them, the akathisia and extreme agitation started again. So I’ve been on a lower dose since then. I sure did sleep well on those meds, too bad I don’t sleep like that all the time.

I think that’s all….I hope that’s all.

I do have another major stressor going on right now, but it’s worrying about someone else, not anything about me. Nothing I have any control over. Is there anything I have control over? Not my life, that’s for sure.

Maxi-Me Update

On By WendyIn Chronic Illness6 Comments
We had a beautiful sunset recently, this is the view from my house. Too bad there’s power lines in there, but the cactus silhouettes sure are pretty

I’m shocked that it’s been so long since I wrote an update on me. The last month, or more has been stressful to say the least.

I just looked back at my last few posts and it looks like I have a lot to catch up on, forgive me if I really have said some of this. I wish I’d written it all before, I like to keep up with things and this is one of the best ways I have of documenting things. So, here goes…

I went to Barrow Headache Clinic in Phoenix, and I really like the doctors there. I saw a neurologist who isn’t part of the actual headache clinic, this was the best way to be seen sooner, the wait to see one of the doctors in the headache clinic was much longer. However, the doctor I did see has been working with the doctors who specialize in headaches. I’ve actually had 3 doctors working on my case. When I had the appointment I didn’t feel rushed at all. I felt like I was respected, that they understood that I’m very knowledgeable about headache disorders (mine in particular) and they trusted me when I told them what I had tried and what didn’t work. They are working hard to help, but they aren’t doing in-patient treatment right now because of the increase in Covid cases. That’s hard. However, they are trying new medications, have changed up some that I was already on (increased some doses, changed forms of some…) So far, I’m very impressed. The only thing I’ve had a hard time with was that I had a hard time getting the patient portal to work, and no one could seem to figure out why. I’d get in, but it had no record of me being seen there, no record of upcoming appointment, no way to message my provider…nothing. Finally it is fixed, that’s making things much easier.

They ordered a Tilt Table Test to see if I’m having blood pressure problems when i stand, or if I have POTS (Postural orthostatic tachycardia syndrome). It did show that my BP is dropping significantly when I stand. (Orthostatic hypotension — also called postural hypotension) It doesn’t appear that I have POTS, if so it’s mild. As you may recall I have been having some pretty high spikes in my BP, which caused a Branch Retinal Vein Occlusion in my left eye, it seems I’ll never recover all of my eyesight in that eye. It’s not bad, but the lower part of my vision is very blurry, it makes it hard to read and to see things clearly on my left side. It may get better, it probably won’t. The last time I went to the retina specialist (about a month ago) it showed that it had bled again, that’s why my vision was a bit worse. I got another shot in my eye, and i go back to him next week. (It was supposed to be a couple of weeks ago, but I had a Meniere’s Flare that lasted over a month). He told me that the reason it bled again is because I had another spike in my BP since the last time I saw him. So, what do we do about my BP. I’m on BP meds for hypertension, which may be causing my BP dropping problems, but it might not. I see my PCP in a week or so to discuss this, I really hope we can figure something out. I’m tired of feeling faint when I stand, my vision blacking and the pain in my head spiking when I squat down and get back up. It’s difficult, if this is contributing to my pain, this needs to change.

I do have hope, but I’m very tired.

The Meniere’s flare really did a number on me. My ENT put me on steroids to break it but it seems to make it worse. It also caused me to be ravenous, emotional, paranoid, restless….it was hard. I looked over my journal entries during that time and they are dark, and very sad.

I’m having wide spread pain. I was diagnosed with fibromyalgia many years ago, but after I made a lot of diet changed, it seemed to calm down a lot. I’d only have short-lived flares. But lately, it hasn’t stopped for quite some time. My body hurts.

I’m very tired. Exhausted.

Stuart is starting a new job next week. It is only paritally remote, he will have to go in to the office some. That makes me nervous. I’m okay, trying not to worry about the future, sometimes I succeed, sometimes I don’t. Of course the Meniere’s flare showed me the worst that could happen. I had severe disequilibrium and minor vertigo for so long. I couldn’t even walk by myself. My walker was of no use, I was way too off balance and would just tumble over. S even had to help me to the bathroom. I didn’t realize how often I pee! I met with a couple of my neighbors and asked if they knew of anyone who might be able to helpo me when S has to work in the office, taking me to some appointments, perhaps coming to help if I’m too off balance…anything that comes up. Both immediately said they were very willing to help. one can’t drive me to appointment right now (she’s having some trouble with her back and it’s causes neuropathy in her feet, hopefully that won’t last), the other is more than willing when she can. She’s a bit busy so I need to make plans as far in advance as I can. I really hope this works. I’m so amazed how the people in this neighborhood have embraced me. I’m sad I haven’t had the opportunity to meet more of them, but Covid got in the way. I can’t believe we are going on 2 years of this. I don’t think it will ever go away, but I sure hope we can deal with it better/easier in the not to distant future.

Another big stressor, my therapist is retiring. At first I thought it was no big deal. I was okay with everything. Now, not so much. I’ve been very anxious. And I realized just how much I am going to miss her. When I first moved here I knew no one, she was my only real contact with people other than S’s family. That’s not good. So she didn’t just feel like my therapist, she feels like a friend. I’m really going to miss her. It makes me cry just thinking about it. This week I met with a therapist who may be my new therapist, I believe in meeting at least 3 times before deciding that, but I felt very comfortable with her, I think it might be a good fit. She even said that my old therapist could join us in a session to help with the transition. I decided that would be too hard on me trying to hear them both, so they are just going to talk so my old therapist can give her an idea of who I am. My present therapist told me, “I’ll tell you everything we talk about” She is so supportive of me. She’s always telling me how special I am, how se admires how I handle things, how strong I am….I don’t think I come across that way to many other people, I’m glad someone does. I do try so very hard.

Well, I’m getting very emotional so I don’t think I can continue right now.

And I haven’t read it over for errors, I’m sure you’ll understand and it will give you an insight as to how I think I guess.

I didn’t close my blog, I promise

On By WendyIn Chronic Illness13 Comments

It’s been so long since I posted I’m sure you all thought I was gone for good. Unfortunately this has to be a very short post.

Presently I’m in a lot of pain all the time. I still have that intractable migraine I’ve had since late April, luckily it varies in intensity, often having much lower pain days. However, there are days it is absolutely excruciating. That isn’t the worst thing I’m having to deal with right now, I’m also having very severe nerve pain across my shoulder, down my arms and the worst is my hands. It’s better when I’m lying flat with my arms at my sides, but I can’t do that all the time. I’m getting a CT scan soon to see if the nerves are impinged in my neck, if so the pain doctor will give me an epidural to help. It hurts so much I have to stop posting this every few seconds just so I can tolerate it a little.

On top of it all I’ve had a severe rash for over a month. The doctors aren’t sure what it is. It is incredibly itchy, it is torture. My allergist thinks it’s the rash you get when you are Celiac and got gluten, dermatitis herpaformis. I had a biopsy last Thursday to hopefully get an answers.

This is in various places all over my body, my back and this arm are the worse. There are many, many bumps you can’t see in this photo.

I think I’m a pretty strong person. After all I’ve been dealing with Meniere’s for MANY years, and I broke my neck in 1992. I’m not a stranger to healty adversities. But I have to admit, this is really getting to me. It’s just so much on top of another. It hasn’t just been a straw that broke this camel’s back, I was hit bye an anvil! I’m so grateful my antidepressant (esketamine) has been working, or I’d be worse than I am now, and right now I feel like blowing my head off.

Now I have to close, I simply can’t type any longer, but I have so much more to say. Hopefully I can post again soon.

Late Night Rambling

On By WendyIn Chronic Illness, Migraines, Pain15 Comments
Me, manipulated in the #photolab app

It’s 1:29am and I can’t sleep. I hurt all over, and I’ve been having vertigo and migraines with all the symptoms that go with it.

I’m posting from my phone so who knows how this will turn out. I doubt I’ll be able to edit it very well. I apologise for errors ahead of time.

It’s been over 2 months now since Stuart got laid off, I’m not tired of him, but I do miss my private time. However, I’ve been having such an increase in symptoms it’s probably best that I’m not alone all that much.

I’m tired. So very tired.

I’ve had a non-stop migraine for almost two months now and I, at least partially, blame my doctor. I had a tele-health appointment with her the beginning of May, right when we were increasing my Spravato treatments back up to two a week and I had every reason to believe that my migraines would get better again. They didn’t, they got worse, and I have no rescue medication that works. I got in touch with her less than two weeks after my appointment to ask for help and she said I need another appointment, so I’ve been waiting two month! The soonest they could get me in was July 17th. I’m finally going to see her next Friday. Now I have a Status Migraine, that’s a bitch to treat. I don’t know if this would have happened anyway, but I feel if I’m in this kind of situation she needs to take care of her patient, so I’m searching for a new doctor. I’m tired of her never being available when I need her.

I had the freakiest, thing happen to me earlier. I was sitting on the toilet and it felt like the toilet started moving under me. Normally when I have vertigo it feels like I’m moving, or the whole room is swaying/rocking..ect. it has never felt like the seat under me is wiggling. Soon I did feel like I was moving, well, it felt like my brain was. It still does just a little, much more if I move my head. I’m so grateful I have an amazing husband who will help me off the toilet and to the bed when things like this happen.

When I got to the bed I could literally feel my brain trying to spin in my head. My eyes weren’t all the way spinning, my vision was a little off, but not like it can be. I rarely have that sensation any more, thank goodness, it’s really hard not to throw up when you see the world spinning around you. It’s hard enough as it is. Right now, When I move my head it feel as if my brain rotates and moves around in my head. My internal gyroscope doesn’t work. My vision spins for a few seconds, and I can feel bile coming up my throat. The only hope for sleep is to lie perfectly still and hope I don’t turn over in my sleep until this has passed.

Now it’s after 2am, I don’t know if the pain will allow me to sleep, but I’m going to try.

Light Switch Flipped

On By WendyIn Mental Health6 Comments
Image by Arek Socha from Pixabay

This is going to be just a (relatively) short update, if you read my last post you will have a good idea of what goes on during my treatments. My dose pack was increased back to 3 (84 mg), but the “trip” that I had the last 3 treatments was not as intense at the first time. It was pleasant, fun even, but not the same. My husband is so patient to put up with this, he says it isn’t bothered by it at all, but I have to wonder. He is not the kind of guy to just let loose and have fun with you when you are intoxicated and he’s not, and I’ve only seen him a little drunk once; and let’s just say he cannot sing but he’s a much better dancer when he’s a bit tipsy.

An amazing thing happened at the end of the last treatment, I felt as if a light switch flipped, and I looked at Stuart and said, “So this is what it’s like to not be depressed.” It wasn’t the happy silly feeling I was having when I was high, of course I wasn’t feeling depressed then. And during mania I don’t feel depressed. This is different. As a friend asked, “Is it like in the Wizard of Oz when the Black and White turns to Color?” YES!! Suddenly the cloud is gone. It’s just gone. If things weren’t so crazy in the world I’d probably be really happy right now, but as it is, I’m handling things really well. I had a little spell this weekend where things slipped in and I felt the cloud closing in, so I don’t think I’m quite to the point of going to a maintenance dose yet, but This is AMAZING!

I had another vertigo spell that lasted 3 days this week. It was mostly severe disequilibrium. I had no balance on Friday, I thought I had an ear infection. I could not walk without Stuart’s help, and by help I mean almost carrying me. I was stuck in a chair the whole weekend and couldn’t do anything for myself. It brought back the feelings of complete helplessness I had when I was at my worse. That is what triggered the small bout of depression, but it probably would have been worse before this treatment. I’m a bit concerned that I’ve been struck with vertigo each week I’ve had these treatments. If it happens this week, I’m really going to think SPRAVATO might be triggering my Meniere’s. If so, I hope it gets better the longer I’m on it. If that’s not the case, at least in maintenance I’ll only need it once a month, maybe getting it less often will lessen the risk.

So that’s all for this news. I have more to tell, but that’s for a different post.

Migraines Suck

On By WendyIn Chronic Illness, Invisable Illness, Migraines20 Comments

Warning: this post may contain whining, feeling sorry for myself, and just plain complaining, but most of it is simply the way things are right now….it sucks, I accept that, but no I don’t like it and I wish it were different.

The last two weeks I have experienced some of the worst symptoms I can recall in many years. I woke up one day a couple of weeks ago now, feeling pain creeping up the left side of my head, it felt like my brain was hurting, inside my skull, my brain was being squeezed. It started on the left side and crept up over my head until it covered my whole brain, I could not help but cry out. I woke Stuart and he could only hold me. The intense feeling of motion, the pressure in my skull, the extreme nausea…it was horrible. Finally it eased to the point that I was able to simply pass out. Then it came back! This happened three more times. I decided sleep was not going to help, so I got up. It continued to happen throughout the day, no matter how much medication I took. Nothing worked. That was the beginning of my walk deeper into hell.

I’ve barely been out of the dark, the light sensitivity has been more intense than I’ve ever experienced it. Often I have not been able to get out of the dark at all. For days on end I couldn’t look at my phone or computer. I’ve been having the feeling of intense movement all day, with visual vertigo on and off. My vision will tilt, double, and is constantly blurry. For 2 solid days I could not focus enough to see much of anything, I just sat in my chair curled up in a ball, with sun glasses on, a towel on my head to further help block out light, an ice pack on top of that, staring at the TV watching shows that I’d seen over and over, just so I knew what was going on, since I couldn’t really focus enough to read the captions and often couldn’t even see what was going on at all. It’s bad enough to be in severe pain and dizzy, but to be forced to have nothing to distract you from that is torture. I tried to meditate, I tried to make up stories in my head, I tried to think of nice places, nothing worked. I was trapped sitting in a chair with my pain, confusion, and vertigo with nothing to help relieve it. I knew at that moment, if I had to live like this forever, I wanted to die.

I continue to fight this. My baseline headache never gets below a 5 now (I have daily headache all the time that normally hovers around a 3 or a 4). Every day the pain gets to at least an 8 for a few hours, and will spike to a 10 on and off. I continue to have all the other symptoms, sometimes they are worse than others, but they are always there. The nasal spray (Zomig) she gave me to try did not work. It’s kind of obvious that triptans have stopped working for some reason. I believe my head has gone crazy because it has gotten no relief. Normally I do get some relief from triptans, so the nerves have some time to reset, a little at least. (my 10 precious days a month when I can take meds gave me a few hours) Now there has been no relief so the nerves are constantly firing and just going crazy. My neurological and vestibular system are on over drive, what is triggering me this much, I have no idea, all I know is that my head is a mess, and I’m miserable.

Now my doctor is out of the country until June 12th, and she has jury duty the first week of July, so she had to reschedule my appointment to July 26th. I admit when I heard this I had a complete break down. I sobbed and sobbed, which of course caused more pain…ugh. But them I thought, I’ve lived with this for so long, a couple more months will not kill me, and I can go to the ER if I absolutely have to. I must admit though, I’m afraid to go to the ER, they treat migraine patients like drug seekers or fakers, the bright lights and noise there is torture, the stress of waiting hours….it makes me worse before they make it better. It’s so scary.

The good news is, her office did get the sphenopaltine ganglion block approved, so I will be getting that when I see her. It’s very interesting, she will actually be teaching me how to do it so I can do it at home. They are also working to get the Migranal approved, it is the Dihydroergotamine (DHE) in nasal spray. I have DHE injectables at home. I haven’t used it because you can’t use it in the same day that you use a triptan, and I had gone over the amount of days I can take meds for the month. When I’ve had intractable migraines in the past, not with the extreme symptoms I’ve been having lately, my previous doctor prescribed a DHE protocol of having 3 shots a day for 3 days to try to knock it out. We are going to start that today. Hopefully I’ll get some relief.

This has taken me two days to write and I’m sure it doesn’t read quite right because my brain is mush, and I know there are things I’ve left out, but I really tried. I even put in a couple of links. Woot!



Journal Day 2 – Yoga Therapy

On By WendyIn Chronic Illness6 Comments

It has been a very long day and I thought about not writing today, but the main reason I decided to post these journal entries here instead of writing them in a personal journal was to keep me accountable and keep me motivated, so here goes it.

Firs Saguaro bloom I saw this year.

My 3 day migraine broke about 10pm last night, so I was able to sleep well until 5am when I woke feeling a bit off and went to the bathroom when suddenly vertigo hit and so did the pain in my head. I had a vestibular migraine, with migraine associated vertigo. I’m not sure how long the vertigo lasted. I took my medication, and used medical marijuana to stop the vomiting and waited it out until I could go back to sleep. Stuart stayed with me and then worked from home to make sure I was okay. When I got up at 10am I no longer felt the effects of the vertigo, but the migraine was more intense. I ate breakfast hoping it would improve before my 1pm appointment, but by noon I decided I needed to take something. It took the edge off just enough that I was able to get through my appointment.

Now, about that appointment! I’ve been in physical therapy for my back and it simply hasn’t been helping so I decided to try something else. Someone recommended a woman who is a physical therapist who teaches therapeutic yoga. I’m working one on one with her. The first visit was very interesting. She showed me lots of photos of how muscles work together and we talked about how if certain muscles in one part of the body are not strong then other parts of the body will suffer. My hips and pelvic area are weak. She said that often when those muscles are weak it will cause pain in the back, especially when standing for a while, like mine does. She gave me some very simple exercises to focus on over the next couple of weeks then I go back in. I don’t know if this will help my back or not, but I know my whole pelvic area needs to be stronger so I’m going to work really hard on this. I’m really proud of myself for going to this appointment after waking with vertigo this morning, often that would cause me to be too afraid to do anything for the rest of the day. I was more off balance than normal, but I was determined, and since Stuart was able to take me I felt safe.

After that appointment we went and picked up my new glasses. I got new glasses a couple of weeks ago, but they made the lenses wrong. They had the focal point in the wrong spot so my progressives were not working at all. Now they are all fixed and I can see the computer. I’m not positive I like these new frames, it will take me a while to get used to them. They are SO different from my old ones. I went from dark bold statement frames to clear light weight frames. What a difference. I would post a picture, but I’m in bed. lol

We then went to Walgreens to pick up some prescriptions of mine and get some things straight they have messed up and I had a bit of a melt down. They really have messed up a few of my prescriptions, calling doctors for refills who I don’t see anymore, filling things I don’t need, prescriptions not showing up on line so I can manage them….So I had a list of things that needed to be discussed fixed, but I couldn’t hear anything in there so Stuart had to do the talking. I was trying so hard to follow what was being said, and he would ask me something and I’d try to answer and then I felt like he just dismissed me and half the things on my list were not addressed and it was just a mess. I ended up in tears and went to sit in the car. There has to be a better way for me to communicate the things I need.

I looked back at the situation and when we walked up there it was so noisy I got so overwhelmed told Stuart that I couldn’t hear so he would need to handle it for me. Right there, I gave up my control in the situation, but then I got upset when I felt like he “dismissed” me. When I started to feel like things were not being handled the way I wanted them to be, I should have spoken up and said something. Even though I couldn’t hear well enough, I should have made them slow down and help me understand, even it that meant they had to write it down. This is my healthcare, I need to be more assertive and stop being so afraid.

There’s something else I need to also look at with this situation though, I had a migraine. The pain had increased to a 7, it was harder to concentrate and focus, my vision was slightly blurred from the florescent lights and the right side of my face was tingling. I honestly don’t know if I would have spoken up if I had been migraine free, but I do think I need understand that migraine changes how you deal with life, and I need to give myself a break sometimes.

Thankful Week 5 – #TToT

On By WendyIn Chronic Illness, Gratitude, Thankful7 Comments

I’m taking part in the Ten Things of Thankful challenge. Simply list 10 things a week that you are thankful for, but no worries if you list less, or a bit more, the point is to get everyone to notice there is something to be thankful for. If you’d like to join in, just pop on over to TToT and add your post to the list, I hope to see you there.

10 things I’m thankful for the 5th week of 2019 are:

  1. Possibilities – Just as I started to write this post I received a message that I may be able to see a specialist in San Diego I’ve been wanting to see for a long time. A special thank you K for making this possibility happen.
  2. My new therapist – I saw her for the first time on Wednesday and if first visits are a clue as to how things are going to go, I’m going to love going through this process with her.
  3. Vertigo that doesn’t last long – Last night I bent over and the world started to spin, I sat down and waited but it kept going. Stuart helped me to my chair and shortly afterward the spinning stopped. Yay! I still felt like I was moving for a while after, but the visual spins had stopped and that’s something to really be thankful for! Plus the meds gave me a good night’s sleep. 😉
  4. My slow cooker – Organic chickens were on sale so we bought 2 and I was able to cut one up and use some of the bones to make stock in the slow cooker. For the other, I roasted the whole bird in the slow cooker, comes out like rotisserie chicken, so good, so easy, and something to eat on for days. Something to really be grateful for when I’m not feeling my best.
  5. Imodium – need I say more? I ate way too many grapes and the next day I paid the price. Thank goodness there’s an over the counter drug to help stop me from running to the bathroom all day. ew.
  6. Shoe strings – I have a pair of yellow high-top Converse that I wore during the reception of my wedding, almost 15 years ago. For years I haven’t had shoe strings for them. I don’t remember what happened to the first pair, the shoes look almost new, so I can’t imagine they just wore out. hmmm? I’ve bought numerous shoe strings that were supposed to fit and they were always either too short or way too long. Well this week I was wearing another pair of sneakers and the strings were wayyyyy too long, so I thought I’d try them in my “wedding” shoes….voila! I can now where my yellow high-tops with joy!
  7. Dinner date set – Finally we have a date set for a dinner party we are throwing at our house. This dinner was originally supposed to be Christmas dinner on December 22nd, it has been rescheduled many times, for different reasons, mostly because of me. I am determined that no matter what it will go on this time! And celebrate my husband’s birthday at the same time!
  8. Another possibility – My therapist recommended me for a study about chronic pain that I don’t qualify for…darn it…but I decided to ask some questions and the group gave me some good information. Now I have the name of a massage therapist who treats chronic pain, he is actually helping with the study, and I have a chronic pain support group in the area I can check out. Good things happen sometimes if you just ask.
  9. Rover.com – we have been needing to find a pet sitter in the area, not that we are going on a trip soon, but if something comes up we need to have a sitter all set up, and our little girl is very picky about who takes care of her. After getting in touch with at least 5 sitters through Rover and meeting up with 3 so far, we know we’ve found at least one that Kiki will adore, and she just lives around the corner! I’m so thankful that we found her and so thankful there is a site like Rover that makes searching for a pet sitter so much easier.
  10. My heating pad – Something as simple as a heating pad, which I’m using right now, can bring such comfort to me. I’m so very thankful that the heat relieves part of the pain in my back and hip recently.

That’s my 10 for the week.

Extra – I’m thankful my Lantanas are blooming. So are the butterflies.

How about you? What are you thankful for this week?

A Really Long Update

On By WendyIn Bipolar, Chronic Illness, Meniere's Disease14 Comments
water droplet on sage leaf

I’ve been saying that I’m “working on a post” for a while now, but I haven’t.  I’m not sure why.  I haven’t been too busy.  I think I’ve just been avoiding talking about things.

My bipolar episode has lasted much longer than I ever anticipated.  I’ve been stable for over 20 years and suddenly I had this awful episode that left me feeling like I didn’t deserve the life I’ve built for myself. I knew if things didn’t change soon, I wouldn’t be able to carry on.  After trying to get my medication working and failing, we decided to go back old school, I’m on Lithium again.  This is the first drug I was put on when I was first diagnosed.  It worked for a very long time, but it damaged my thyroid and we decided to try something else.  Fortunately, at the time, I responded well to the alternative medication.  Since the damage to my thyroid as already happened, there is really no reason for me not to take it, and fortunately, it works really fast.  After being on it for about a week I could tell a huge difference.  I’m still having that low hum that makes me feel like I’m going to explode at any moment.  But I don’t explode, I might get angry, but I don’t have the rage I was experiencing. I just increased my dose, so I’m hopeful that anger hum will diminish soon.

That is the good news. I’m leaving out all the rage episodes, the night I was actively seeking for a treatment center to commit myself because I was very afraid I was going to harm myself or someone else, the anger I felt toward my psychiatrist because I can’t hear a word she says and I have to have my husband in there to help me.  At this last appointment I was so distraught by everything I couldn’t really talk at all, he had to tell her everything.  Before we left I asked where I should go if I were in crisis, she asked if I felt suicidal, I told her how I had been feeling, she simply told me which facility I should go to, but I didn’t feel like she took me seriously.  Perhaps I’m being overly sensitive and she understands that hubby will be here to monitor me and see me through this trying time. It’s very hard to get to know a doctor when you are in the throws of a  (disphoric mania) mixed stated bipolar episode.   Yes, I did say, mixed state.  I’ve only talked about the rage here, but I’ve been bouncing around from extreme anger, severe depression, and wanting to jump my husband’s bones….all in the same day. Sound a little crazy?  Yep, I felt that way too.  Thankfully, it’s calming down and I’m feeling more like myself.

Unfortunately, I can’t say the same for my health.  The vertigo, migraines, and hypoglycemia have had me pretty sick, most of the time. Last Saturday we went out to breakfast with my father-in-law, shortly after getting our food the world started to spin.  I lowered my head, took my meds,  and told them to continue.  I was sure it was going to be a quick attack and I’d be okay in just a little bit.  I might not be able to eat, but I could take it with me.  I was wrong. The spinning got worse and I was afraid I was going to vomit right therein the middle of the restaurant.  I got Stuart to get me a throw up bag from my purse and I clutched it tight.  I told him it was BAD, REALLY BAD, and I needed to go home.  I motioned for him to get the food to go.  Hey, I wanted my pancake!  I really didn’t think about how hard it would be for me to walk out.  I couldn’t focus and I felt like my body was moving in ways that my brain really wasn’t telling it to.  The sensation of  being moved from forces that no one else sees is very disturbing. I used to think I had gotten to the point that I was okay with all of this, but I really,really hate it.  I knew my feet weren’t going straight, I kept trying to compensate, that seemed to make it worse.  I clutched on to Stuart for dear life.  It was absolutely mortifying.  The only thing that would have made it worse,is if I had thrown up too.  I will say,my brain seems to deal with the episodes better than it used to, I rarely throw up anymore.  Of course, I did get a Phenergan in me at the very first sign of the attack, and as soon as we got outside Iused my vape pen that’s 4:1 CBD:THC just a little and it calmed my stomach right down.  I also never feel the psychoactive effects with this ratio.  Itis still illegal to use medicinals in public, under normal circumstances I’d never do it, but we were away from other people, and since people use those cigarette vape pens, no one knows what I’m doing. But as I said, normally, I’d never use that in public.  I thought about using an infused candy or tincture, but they simply don’t start working fast enough to help stop vomiting.  But I digress….  This was the first time my father-in-law has seen this, that was hard, but I’m relieved he does understand some of what I go through before he moves in with us.  He also handled it with grace and was very helpful to Stuart.  Not that I really noticed at the time.

I’ve had a lot of challenged with my balance this past month.  Kinda regretting buy a car, but even if I can’t drive it, it’s nice to have a convertible in the family.  I am very disappointed that I can’t drive though, having that feeling of independence was nice.  I was still having vertigo occasionally, but it didn’t last long, it was mild in intensity, and I always had signals that twas about to happen, so I wasn’t afraid to drive.  That all changed.  I accept it, but it makes me sad.

I found a new ENT and I really like his so far.  He admitted that I’ve had all the treatments that he could recommend, yep, I’ve had it all really.  He did say he could give me steroids to try to help with this flare, but since I had Avascular Necrosis that they think was caused by steroid use, I don’t use them if at all possible.  He understood.  He suggested trying Benedryl everyday because it’s a vestibular suppressant.  I never knew that.  I tried it for over a week and didn’t get the results we’d hoped for. So I asked if I could take diazepam for a week or two to try to calm itdown and he said yes.  Also, the Audiologist there called and said she isn’t as experienced working with my brand of cochlear implants so they are having the Advanced Bionics specialist come in to do the adjustment to my CI’s (mapping).  I was so very impressed with that.

I’m also working on getting a new migraine specialist, I really don’t like the guy I’ve been seeing. So cross your fingers I like the new lady.

I’ve done something that I’m afraid I may have a very hard time pulling off.  We had planned to be in our house by now and we planned to host Christmas there.  Well….I decided we still needed to do it, but man is it going to be a lot of work.  I’ve invited the whole family, and one friend. That’s 6 adults and 2 children.. 

But this is the first Christmas that Stuart’s step-mother will not be home.  I feel it’s important for his father to be surrounded by all of his family for a Christmas celebration.  We are having it on the 22nd so Dad can spend Christmas day with his wife. We have been thinking about joining them, but it’s a busy time at the home, and her daughter and her significant other will be there.  So, I think it will be good to go have dinner with her between Christmas and Thanksgiving.

I’ve been trying to make cookies, the kind you decorate all pretty with royal icing.  I decided they were WAY too sweet with the icing, since it is just a sugar cookie, so I’ve been trying to make the icing less sweet.  Problem is, as I have been working on a new recipe I have to keep tasting it.  This stuff is super sweet…cloyingly sweet.  So twice now, I’ve had a hypoglycemic crash.  Feeling dizzy, light headed, sick to my stomach….ok so none of that is new….cold sweats, shakes, stomach cramps….I even threw up.   Yep, blood sugar drop.  Now I’m not even sure I ever want to decorate cookies.  My back always hurts when I do it anyway.

Oh…other challenges this week.  I had my physical on Monday.  All my numbers were good!  Even my triglycerides, they have only been normal one other time in my life. Shockers!   However, I was having a slight pain in my kidney area and asked if she’d check my urine.  I’m so glad I did!  By the next day I was in severe pain, still am if I’m honest, and the nurse called and said that I have a UTI.  HAHAHA I found that amusing because I really had no idea when I asked for the test.  My back has been hurting so I thought it was just that, it was obvious the next day that is wasn’t.  So now I’m taking antibiotics…eww.  Can you imagine how much worse it would have gotten if I had needed to go back to the doctor for a test?  Phew!  that was lucky.

I also got a pneumonia vaccine, I had to have one when I got my cochlear implants, and I was supposed to get a booster in a few years, I’m about a year late, but I got it done. (it is supposed to reduce the chance of meningitis)   1% of the people who get this vaccine have a reaction to it.  Yes, I am that special!  The injection site swelled up and turned read.  It measured about 3” in diameter, and it was so painful.  If I moved my arm a very sharp pain would shoot through, not as if the muscle was sore, a very sharp pain.  I couldn’t lie on that side for over 3 days.  Finally it is feeling almost back to normal.   Golly, that was an experience.

There I think I’ve caught you up on all things Wendy for now.

I hope you are having a joyful holiday season.  Try not to overdo, as you can see I probably am…..big dummy.  😊

*photo, “Water Droplet on Sage Leaf” taken by W. Holcombe.  Please do not use without permission.  All rights reserved