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Category Archives: migraine

Where am I

Well, mostly house-bound due to the migraines and related symptoms and episodes. I go to see my therapist and to doctor’s appointments (too many), but otherwise I go nowhere right now. I missed all the winter holidays with my family (who are almost next door) because noise and light and visual stimulation would just make the migraines worse. I also did not go to mother’s day at Hub’s mom’s house, but for more reasons than the migraine shit.

I completely changed my diet for 5 months, eating no grains, no sugar, no dairy, no gluten (well, I’ve been that way), no nightshades. I’ve lost 45 pounds (that I could afford to lose, but I lost it over 3 months which is too fast) and my food anxiety is still here. I eat the same basic foods over and over again, and I don’t eat any snacks or drink anything other than water. At the moment, I continue on this very restricted diet because I’m afraid to add anything back in because it might trigger an episode of vertigo or nystagmus.

I thought I was doing better (see my last post) but then I had multiple episodes of vertigo and nystagmus again, even when I didn’t change a thing I was doing or eating. Horribly depressed, we squeezed onto the specialist’s schedule again and made the trip to see him. One of the things he had given me initially was a prescription for klonopin and zofran. He told me to take both for the drive to his office about 40 minutes away in the city. I did, and had a very disassociated conversation with myself while we were driving and waiting for the doctor. Needless to say, if I have to use the klonopin again (it’s a vestibular suppressant), I will only take half a pill.

The specialist told me I had done all I could with diet, so he wanted to put me on a preventative medication. Unfortunately, there’s no targeted migraine medication (yet), so everything is off-label for other issues. After talking about my sleep issues, he offered me a tricyclic anti-depressant at very low doses. I have medication anxiety due to my incredible sensitivity to medications of all kinds. The first two weeks I had to wait until Hub was upstairs with me and he had to literally hand me the pills. After that (and talking to my therapist a lot in therapy), I tried to just consider the pills with indifference rather than with fear or hope. I take them okay now, but…they have side effects of course (including incredibly vivid horror nightmares that I’ve woken Hub up in the middle of the night because I’m screaming in my sleep). Even at low doses, I am sensitive. And in fact, I had started making the rounds of testing and other doctors because my hands and feet started feeling incredibly cold and both fingers, toes, and feet started turning blue-purple. Talk about anxiety! I tried to reduce my dosage of the medication, but my migraine symptoms started coming back the very next morning. So after five days of that I went back up to the higher dose I’d been on for 3 weeks and I went for ultrasounds of my legs and the arteries in my legs (two different tests). I also saw a rheumatologist and then a vascular surgeon because one of the ultrasounds came back showing that I might have an issue with an artery in my ankle or something? In the end (and this is from Monday of this week) both the rheumatologist and the vascular surgeon said this is Raynauds due to the medication. It’s been suggested I wean off the meds and try something else, although Raynauds is generally not dangerous just inconvenient and annoying. At the moment, though, the meds are helping me to some extent so I need to decide which is better, stay on with side effects or go off and feel like absolute shit while trying another med that may or may not work.

So for the moment, I’m holding on the current medication at the current dosage (MAV specialist wanted me at a slightly higher dose than I am now) until after I see the cardiologist tomorrow because the meds I’m taking could have (or be having) heart implications for me. Another reason I might need to consider switching to a different preventative.

I’m tired all the time, more from anxiety and stress than anything else. Hub is still taking care of so much, and I worry about him. We have someone coming in once a month to do a heavy cleaning of the house, but Hub tries to keep up with everything in between. I barely see my family, I don’t go to any gatherings because the noise and visual stimulation is too much. I don’t see or talk to any of the few friends that I have. I don’t crochet, I don’t read, I don’t use the computer. This is the first time I’ve been on the laptop since my last post in January. I mostly use my iPad and phone, and even then not that much and it does bother my eyes and head.

Meanwhile, I need to find a new neurologist because the MAV specialist said if I’m going to change medications he doesn’t want to deal with it. Which was disappointing and frustrating. He said if his first line of medications doesn’t work with a patient, he then suggests they have their primary doctor manage other medication trials…but I don’t want migraines managed by a primary. And plus, I have to find a new primary because during this round of *shit* hitting the fan (blue fingers, blue toes, was it a blood clot or peripheral artery disease or…) she ordered two tests but MIS-ordered one of them. So I had to go to two different testing locations when I could have gone to one, and I had to pay for two tests when it should have been done in one. AND THEN when one of the tests came back she sent me a note in my portal saying everything looked fine, only I pointed out that the radiologist’s note said one of the results noted “diffuse disease.” And she wrote back, “Oh, I must have been looking at the wrong test results, thanks for pointing that out” and then she sent me referrals for the rheumy and vascular doctor. WTF. How do I trust anything she’s done or said over the 12 years I’ve been going to her? She isn’t reading the reports or paying attention to the results or whose test is whose? W.T.F. So yeah now I gotta find a new primary and start all over again with my complicated medical history. Sigh.

I hope the meds continue to make me feel less awful and that I can keep taking them. Meanwhile, I muddle along. Maybe next week I’ll be able to crochet more, or do more with the dogs, or read a few pages in a book. Or maybe I’ll feel better for a day or two. I seriously don’t even know what to hope for at this point.

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Sick and fragile

I’ve been MIA, but not because I wanted a blogging break. Not because I wanted to stop reading social media, or reading books, or crocheting, or using my laptop or iPad or phone.

I’ve been sick. Sick to the point that I was initially bed-ridden, mostly house-bound, and unable to function. It has been close to hell-on-earth. It’s an experience I had hoped to never have again, but the universe doesn’t seem to give a shit about my hopes.

In mid-October on a Saturday, I went to the local Renaissance Faire with Hub, Brother#2 (B2), my MIL, and Hub’s aunt. We were there for most of the day…it was overcast and mostly mild, though I went prepared with a mini-fan hanging around my neck. I haven’t been to the RenFaire in years, mostly because it’s the same acts and shops year after year. Hub likes to go and it’s one of the few times he gets to spend time alone with his mother, so I encourage him/them to go on their own. This year, though, B2 was in town and he expressed interest in going. I didn’t want him to have to go “alone” and I didn’t want him to feel obligated to follow Hub and his mom & aunt around, so I went.

By the time we were ready to leave, I was exhausted from walking around. I’d eaten very little, drunk nothing, and once in the car realized that not only was my body painful and weary, but I had a huge headache. On the car home, the headache turned to migraine (which I seldom get actual migraine headaches), with the fun of light and sound sensitivity. When we finally got home, I took two Tylenol (I never takes meds), drank almost an entire bottle of water, then went to bed. The next day I felt okay, but Monday I started feeling worse. The headache was back, the light and sound sensitivity were back, and I was nauseated. Again I took two Tylenol and went to bed…for most of the day. Then Tuesday I had a vertigo attack that included nystagmus. If you are not familiar…nystagmus definition. This is a factual definition. Emotionally, nystagmus is hellatious, makes you feel sick, keeps you from being able to stand, move, or even see properly. It’s terrifying. TERRIFYING. Add that to the spinning of vertigo and…I can’t even.

For the next six weeks, I had periods of vertigo and nystagmus added in with the nausea, light and sound sensitivity, headaches, increased tinnitus, and major imbalance. Imbalance to the point that I wasn’t walking on my own…if Hub wasn’t around I had to use a walker or cane. The vertigo and nystagmus came and went without provocation, and there was nothing I could do to stop them, either. I had to wait it out. Sometimes it was just a few minutes worth, sometimes with the nystagmus it went on for hours…once it stayed over 18 hours, through my sleep. I was extremely fatigued, so I basically went to sleep at 8pm and woke at 7am most days. Even when I was awake I was exhausted. I was barely eating anything (and not very balanced foods), and in 3 weeks I lost 20 pounds.

Hub made doctors appointments for me because I couldn’t do anything for myself, including talking on the phone. I went to my primary doctor who said it was a sinus infection and tried to put me on antibiotics. I didn’t believe her so I went to an ENT who said it was migraine and tried to give me a migraine medication. I took half of a pill and within half an hour got nystagmus that lasted for ninety minutes, so I didn’t take it again. Then Hub called the doctor that I had seen in 2004 for what was then diagnosed as Migraine Associated Vertigo (MAV), later the term was changed to Migraine Associated Dizziness. The doctor is one of the few who specializes in neuro-vestibular disorders in the country…his office was scheduling appointments into 2019. Hub pleaded and cajoled with the scheduling office, who contacted the doctor’s staff to indicate that I was a previous patient who was having a bad relapse. Bless Hub, he was one squeaky-ass wheel and he got me in for testing the following week, and then in to see the doctor the week after the tests. Meanwhile, I found a physical therapist who specializes in migraine associated vertigo and we set up appointments for balance retraining therapy.

After the testing (some of which I refused to do because I’d had it before, it was HORRIBLE to go through, and it had been inconclusive in the past — specifically the caloric testing) was completed, I started on the migraine diet (in other words, I stopped eating pretty much anything other than plain homemade protein, plain broccoli and cauliflower, and sweet or white potatoes plain) and began seeing some relief from the vertigo and nystagmus. It was slow, but progressively moving in the right direction. My balance remained bad, but that I could deal with…the nystagmus and vertigo were almost too much to bear. I was horribly depressed, crying a lot, unable to get out of the house, and living in darkness because of the light sensitivity. And every sound made me cringe in pain.

I saw the physical therapist for evaluation. She did a lot more testing than I expected, provoked nystagmus and vertigo, and asked me so many questions. The appointment was almost 90 minutes long…it was crazy. She said it was clear I had a history of motion sickness and balance issues, that my vestibular system was highly sensitive, and that combining that with the potential migraine issues, she couldn’t really pinpoint one reason for my issues. But she thought she could help me with balance retraining for my brain and vestibular system. We set up appointments for the following few weeks and went home. I was beyond exhausted.

Then I went to see the specialist who went through a few more tests, took recent history, and did his exam. He felt confidant that I was experiencing a relapse of the MAV, now called Vestibular Migraine (VM). He gave me printed information, recommended a book (that I’d heard of but never owned) on the migraine and headache diet, then recommended several OTC vitamins. He said if I didn’t see positive progress in 6-8 weeks, we could discuss prescription medications. But he said that since I’d been majorly symptom free for many years, he felt I could get there again with the diet and the vitamins.

I was depressed and exhausted. I was struggling to eat anything because I was afraid it would provoke the vertigo and nystagmus. I began (and am still) over-analyzing every food and food additive…so I basically only eat whole food that we make at home. And I’ve hardly varied yet outside my standard “safe” foods. I had stopped eating salt (in case I had Meniere’s which is salt-induced), and only added that back into my food in the last two weeks. I had stopped eating mayonnaise (which I love) because of all the additives, so we tried to make our own at home with limited ingredients, but it was kind of a disappointment. And I found I didn’t want to put it on much of what I’m eating at the moment, so we haven’t made it again. I tried the magnesium that the doctor recommended, but instead of helping to relax my muscles it actually gave me muscle aches and cramps…so I stopped taking it.

I started using my iPad to check email a few times a day in December. Around the same time I tried crocheting a little at a time. Both provoked my imbalance and rocking/swaying feelings, and made me tired. Only in the last week have I been able to turn on my laptop and use it briefly. Hub has been doing everything, including taking care of the dogs, hiring a dog-walker to handle the dogs when he isn’t home (at work) because I couldn’t, paying all the bills, doing all the shopping…everything. He finally caught a cold and slowed down…so I started trying to do more. Then I caught his cold and I’m still sick now. My brothers have tried to help out here and there. I stayed home for Thanksgiving (Hub made us a turkey breast) and I stayed home while Hub went to his Mom’s for Christmas. I only started wearing my glasses again yesterday, as I was afraid they would make my imbalance worse. Fortunately, my glasses don’t seem to bother me…important because I gotta go get my driver’s license renewed in the next two weeks and I need my glasses for that.

So, here I am, trying to get my life back. And I’ve added in this new fear of food. There have been some issues I won’t talk about, and then on Friday a health incident with my father, which I WILL blog about in a day or two. As for now, I need to get off the laptop because I’m starting to feel rocking/swaying from the screen.

 

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This body

Last night I was not able to fall asleep, so I started working on my thankfulness list. I don’t do it every night anymore, but I still do it when I need the reminder. Or when I need the distraction. Last night was probably both.

One of the things I decided I was thankful for last night was my body.

This body. The one I’m in right now. The only one I have. The one I claim has rebelled against me for years. That has failed me. Yes, that body.

This body, that is too round, too fleshy, too fat. Too dimply. Too hairy.
This body that requires effort to haul around, with muscles that are too tight, joints that that are too painful.
This body that has acne and scars and rosacea.
This body that has allergies and vertigo, migraines and imbalance.
This body with feet that are too big, ankles that are too chunky, thighs that are too wide. Hips that are too wide. Shoulders that are too wide. Butt that is too big.
This body that has hair that is too coarse, too wavy to be straight, too straight to be curly.
This body that has fingernails with ridges, that split long-wise when you sneeze.
This body that has one patch of skin on one hand that itches unbearably but looks completely normal.
This body that has skin on both hands that are dry and crack and bleed all year ’round, that make people ask me what’s wrong with me.
This body that has one eye that doesn’t move right, so that I can’t see to my left without turning my head.
This body that has saggy arms and saggy jowls.
This body that has a stomach that is too big and sticks out to the front like I’m pregnant, but is narrower on my sides than my hips which means I can never find jeans that fit.
This body that has breasts that sag. That don’t fit into bras properly. That need to have extra padding (that I don’t freaking need) to hide my nipples.
This body that has rolls and creases.
This body that has sebaceous cysts. Sometimes in bad places. Sometimes in REALLY bad places.
This body that has trigger points and muscle spasms.
This body that has tinnitus and ears (and cheeks) that burn and turn red-purple from being flushed for no reason (and/or because of allergies).
This body that has stomach issues. Constipation. Diarrhea, bloating, gas. A bladder that keeps me awake at night after drinking less than 4 ounces of water. Or no water at all. (WTF)
This body that doesn’t allow me to sleep. Or get rest. Or feel refreshed. Or find relaxation.
This body that houses my anxiety and my depression.

This body that allows me to help take care of my parents. My husband. My brothers. My aunts and uncles. My dogs. My friends.
This body that makes soup for my mom that is the only thing she can eat the Monday, Tuesday, and sometimes Wednesday that follows her infusions. That makes ice cream which still tastes good to her even when the chemo messes with her taste buds.
This body that carries me through the day so I can crochet chemo hats for patients who need them.
This body that moves me from place to place. That gives me the ability to raise money for charities that are important to me…charities that bring help and healing to many people.
This body that permitted me to write books that touched other peoples lives.
This body that houses my brain. And my heart. And my soul.

I want to love this body, I really do. I want to ignore all the first list and concentrate on the second smaller list…I’m trying. Some days it’s not so bad. Last night when I was trying to remember to be thankful for this body of mine…in the dark of night when I’m trying to ignore how loud and fast my heart rate feels/sounds, saying how I am appreciative for this body of mine felt worthwhile and important. Today, when I’m standing in front of the mirror and I see my naked body, it’s only the first list that crowds my mind.

Without this body–MY BODY–I am nothing. I need to remember that. I need to love my body no matter its form. BECAUSE of its function.

 

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One giant step

Backward. Fuck.

Really, I don’t want to make this out to be a big deal, because I hope it isn’t. But right now, it is. And I want to cry.

*****WARNING: TRIGGER ALERT FOR THOSE WHO MAYBE BE DISTRESSED TO READ PANIC ATTACK DESCRIPTIONS********

I’ve been riding our recumbent bike three or four times a week. I was previously riding one at PT, but only for five minutes or so. I finally told them that I would ride at home, to free up that time to do things with them that I couldn’t do at home. Our bike at home (and the one at PT) has a digital read-out, that tells you all manner of things. I usually lock it on one screen that keeps me in tune with how fast I’m pedaling and how far I’ve gone. Sadly, it also tells me my heart rate, if I’m holding the handles. I specifically only check in on my heart rate 3-4 times during the ride, so I can see where I am, but not focus on the number.

Tonight I decided that I had a book to read–I rarely have new books to read anymore–so I would try reading on the bike rather than just biking to music. So I brought the book in with me and turned on the radio. And about four or five minutes in, despite the attempt to read, I realized I was making myself motion sick. I have that issue in cars and on boats–and sometimes on dry land while doing nothing because of my stupid vertigo/imbalance issues–but I didn’t even consider I would have that issue on the bike. Anyway, when I realized I was getting ill, I stopped reading and started watching the read-out instead. Because of the imbalance, I was also clutching the handles that had the heart rate measure thingy on them. Which meant I could see my heart rate as I was riding along…

And then I felt that familiar and unwanted wave of anxiety wash over my head like a wave. Down my face and neck, over my chest, down my arms. Of course the heart rate monitor went up…and up…and up. And I KNEW it was my anxiety, but each climb of the number made it worse. And I just couldn’t let go of those stupid handlebars. I slowed down my pedaling, started to try to slow my breathing. Talked to myself, reminded myself that I was okay, that exercise is SUPPOSED to increase my heart rate. That it was fine, I was fine. Over and over I told myself, and still the panic clutched at me. The anxiety pressed down on me. Wrapped me in a cocoon and suffocated me. I battled back, and continued biking. More slowly, until my time was up, even though I felt my heart beating so hard in my chest that I thought I could see it when I looked down. I felt shaky and unstable, but I stayed there, no longer pedaling, watching the heart rate as I tried to slow down. I looked up and away from the bike’s digital read-out, softened my eyes, looked at everything else in the room, tried to bring myself into the moment. Then I got up, turned off the radio and the light in the room, went and moved laundry from the washer to the dryer, and came into my bedroom. And I told Hub what happened. He asked if I needed anything, said he loved me, and let me be.

Even now, twenty minutes later, I have a terrible taste in my mouth, I have chills, and I feel wired. Still shaky. I feel sad, angry, and let down at myself.I don’t like it, and I want it to go away. The residual shakiness takes time to go away, I know, but it leaves me feeling on the edge.

I have had a headache all day and now it feels amplified. Lights hurt my eyes (last night, too). It’s potentially a migraine episode hanging around, even though I don’t generally get the classic painful migraine. Either way, it’s just adding to my lousy, along with an aching jaw from a TMJ flare…probably clenching because of the headache yesterday and today. *sigh*

So not happy.

 

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Chutes and Ladders

Do you remember the game Chutes and Ladders? Did you play it as a kid? I did. I was not a competitive child, and have remained that way as it pertains to games and board games. I like to play, but I don’t like to play cut-throat. I think it comes from being the only girl among my siblings…I hated being ganged up on, and I hated feeling left-out. I wanted everyone to enjoy the game, not lord their win over each other. There are games I refuse to play with Hub because he’s all about cut-throat wins (Monopoly for example…Hub is forever trying to make horrible trades whereby he would be taking all my money on the first go-round. What fun is that?), and that isn’t fun for me.

Okay, so anyway, Chutes and Ladders.

Chutes and Ladders board

You were supposed to make your way up the board, landing on squares that let you climb the ladder–and therefore jump ahead quickly–and avoid landing on the squares with the slides. Those damn slides that set you back soooo far in the game that it was nearly impossible to win. Unless you were playing with Mom, who cheated and fell down a slide immediately after you did so you were both in the same boat. (Love you, Mom!)

So you see that long slide in the middle of the game that originates up there at 87? And slides all the way down to 24? Ye-ah, that’s about how I feel with regards to my knees and my health in general right now. Okay, maybe just my knees (my health is probably 47 –> 29), as I feel I have slid a long way backwards, even though I am still in PT. I’m having trouble walking, both knees are attempting to give out occasionally, and I’m in pain most of the time. Even when I’m not standing, my knees are bothering me. I have to keep my legs elevated, as leaving them bent and hanging–like sitting in a chair or on the couch–leaves me in more pain. But laying in bed or sitting on the recliner with the foot support up…I have trouble finding a comfortable position. Both knees are unhappy being straight and unhappy being bent. They are unhappy going from straight to bent, and bent to straight. It sucks, as pretty much everything hurts. Walking on them is equally as difficult, as the pressure of weight makes everything feel exponentially more painful. Sleeping is uncomfortable, too, as I can’t lay on my back and straighten my knees–that hurts–and lying on my side puts weight on one knee or the other. Even with a pillow between, that weight is not comfortable. I’m not walking up and down the stairs–I haven’t for about two weeks–and I’m not going outside with the dogs (with the exception of Snow Day #2).

Top that with the back pain I’m having these days, and sleeping is very very difficult. That means I’m not sleeping, which is bad, bad, bad. Sleep is where your body gets refreshed, and with no refresh I just go further down the slide. I’ve been feeling crappy. I know that isn’t a technical term, but it’s the truth. With the bad knees, the back pain, and the not sleeping, I just feel crappy. I’m dealing with headaches, a stiff neck, and some fun positional vertigo. I’m also feeling the imbalance that waxes and wanes, but never really leaves me. It’s been more noticeable in recent days, which contributes to the crappy feeling.

Have I ever mentioned I have tinnitus, too? I am rarely ever in a dead-quiet room, because without some noise, my tinnitus gets really aggravating. I fall asleep to a radio, I read with the television on, I write with the television on, I have music on when I’m working. My tinnitus is bugging the crap out of me today. I mean, really, WTF.

And as of sometime this afternoon, I’m getting weird shooting pains up my thighs. I assume it’s a muscle thing, but who the hell knows. Tomorrow I go see T and I am guessing based on my post tonight, I’ll spend the majority of my appointment bitching about that crappy slide from square 87 to square 24.

 

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Massage Envy

The physical therapy group that I go to has recently added a Massage Therapist to their roster, rounding out the talent there that includes PT, accupuncture, and Bowen Technique. I’ve been to a massage therapist in the past–13 years ago–and I liked it very much. It is more specialized than a typical massage, and I feel a massage therapist has more training in therapeutic work than a masseuse. I was interested to see the new addition, but consider how much work I feel I needed to do in PT, I didn’t consider using the MT at this time. However, in order to boost the MT business, the group decided to give away gift certificates to clients, one free one a day for I don’t know how long. Lucky me, they decided I would get a gift certificate! So I checked my schedule against the MT’s–who is only there two days a week–and set my appointment.

I was both excited and nervous, because I hadn’t had a massage in a very long time! I had asked my Physical Therapist to speak to the Massage Therapist before my appointment, so she could be aware of the issues I’ve been working on and not make anything flare up…which she did do. So when I went in for my massage, the therapist was ready for me and we talked about what she should focus on and that she should work more lightly than normal, and we could adjust as we went along. I was very pleased with the Massage Therapist because she was kind, easy-going, and generally had a good spirit. And hot-damn did the massage feel good while she was doing it. I forgot how nice a good massage could feel, even on muscles that are tense and tender.

Immediately after the massage–which focused on my neck, shoulders, and back–I felt nice, relaxed somewhat, and glad I had the opportunity to get one. But by the time I got home after a twenty minute drive, I didn’t feel much of anything different than before the massage, except I had a headache. And by the time Hub got home an hour later, the headache was really annoying, and I felt some of my imbalance bugging me. Not bad, but like it was just hanging around the edges, waiting to get bad. By the time I went to bed I felt grumpy and off-balance even more. Brushing my teeth I felt the swimmy, floating feeling of imbalance, and once in bed I felt the on-the-boat rocking motion. As if that wasn’t all sucky enough, then I tossed and turned all night, unable to get any rest. I think I slept maybe total of an hour or two, the rest of the time I was awake, lying there, feeling exhausted and off, with a headache, tossing and turning all over.

I don’t know if this is typical for post-massage (the restlessness, I guess, because the rest of it is probably singular to me because I’m so messed up), but it makes me not want to have another massage. As much as I enjoyed the massage during, the after-affects were crappy. Even today, the day after, I feel grumpy and yucky, and a tiny headache still lingers. Bleh.

 

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