Helping women with chronic illnesses

Category — Migraines

Getting Back On Track!

The five year anniversary of me starting a blog will be in about three weeks. In all of that time, the longest I’ve gone without writing has been recently. It definitely hasn’t been easy for me to step away from it but there have been various reasons that I couldn’t maintain the pace I had set before. I am hopeful that I’ll get things back on track as soon as possible.

It really bothered me that I was unable to be active online this year for Endometriosis Awareness Month. Little did I know when I posted that short video on March 1st that it would be my only March post! Sometimes we just can’t predict what life will throw at us, though. So – as I’ve said before – I try to speak out for endometriosis awareness, as best I can, throughout the year.

Aside from managing my own illnesses, I have been spending time helping a relative who was recently hospitalized, I’ve been helping other family members with various issues, I did some volunteer work that I was “recruited” for, and I was summoned for jury duty.

I have written many times about the importance of pacing and the frustration I feel when I am unable to write regularly on this blog . While I have missed the time I’ve recently had away from this blog, I know that I needed that time to focus on other activities.

In recent weeks, I have been dealing with the same type of fibromyalgia flare-up I get every year when winter turns to spring. While my migraines have been less frequent and less severe since I’ve been getting acupuncture for them, I’ve still had some.

In regard to jury duty, it was an interesting experience. I have been summoned for jury duty many times over the years (far more than most people I know). The last time I was called, I was extremely sick and it was out of the question for me to go in. My doctor had written a letter that excused me from jury duty.

This time when I was summoned, I really stopped to ponder whether I thought I could do it or not. Without a doubt I am still in poor health. My fibromyalgia has been flaring and it really hurts to sit still in one spot for any length of time. That one illness alone would make jury duty a challenge. At the same time, I am not in the very dire shape I was in when I was last summoned. So, I discussed the summons with my primary care physician. She was fully prepared to write me another letter (and she’s not one to take writing such letters lightly); she knows how sick I am and how difficult it would be for me to sit still for so long without moving/stretching and to have infrequent access to a rest room (considering that my interstitial cystitis can cause severe bladder pain and make for unpredictable timing as far as the need for a rest room).

However, I look at jury duty as an important civic duty – like voting. I wanted to give it a shot if I thought I might be able to do it. So, she advised me to take advantage of the time to talk with the attorneys privately about my concerns (rest room access and avoiding exposure to fragrances were the two things I was most worried about). I had been through the voir dire process once before and was already planning on talking with the attorneys privately before my doctor suggested it. So, I screwed up my courage and took a pass on the note from my doctor.

My jury summons number was low. So I knew from past experience I would be called in on the first day. Sure enough, when I called the automated message it said to report the next morning. To make a very long story short, I ended up being one of the people called to sit in “the box” to be questioned by the attorneys. The judge had given some basic details about the case. It was a medical malpractice case that was expected to last two weeks! At this point, I will be perfectly honest and say that I started to wonder if I’d made a mistake passing up that note. However, I patiently waited for the opportunity to speak with the attorneys privately. This came at the very end of the first day. (I will say that I wasn’t sure how I would make it to the lunch break that first day; my bladder was not happy)!

© Jenny Rollo

The private discussion with the attorneys enabled me to share my concerns. In addition to explaining my concerns regarding rest room access (mainly because of IC) and worries about fragrances (and their potential to trigger migraines or even make me faint due to MCS), I had to fill them in on the 2008 surgery I had – which did not go as intended and which has resulted in permanent damage to my left leg (long story). After listening all day to questions pertaining to the medical malpractice case (where a man is now disabled following knee surgery that did not go as planned), I knew that I needed to disclose my own history with having had surgery that has resulted in lifelong damage to the nerves in my leg. We were instructed to return the next day and then I was excused by lunchtime the second day. I have no doubt that my leg situation made me an unwanted juror for that particular case. The good part was that I had the satisfaction of knowing that I had done my best and given it a shot. While there would have been absolutely nothing wrong with me being more cautious and having simply accepted a note from my doctor, I’m glad that I gave it my best shot.

In any event, I am really thankful (and lucky!) that the long stretches where I haven’t posted anything here have not resulted in people unsubscribing from my blog. On the rare occasions I’ve hopped online long enough to take a look at my blog statistics, the traffic has not dipped down in any kind of significant way. I can see that people are still reading my blog even when the most recent post is outdated. I can’t begin to express how grateful I am that people have been so patient and understanding. It’s too soon to tell when I’ll be able to get back on track the way I really want to but I am making every effort to do so.

In less than a month, it will be five years from when I started blogging. The thoughtful people I’ve met – through this blog, through my YouTube channel (which I really need to update more often!) and through social media – continue to amaze me. Thank you very much for your ongoing support and patience!

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

May 7, 2013   4 Comments

Sleep, Sleep, Sleep…

There is so much I want to do.

There is so much I want to say.

My body, however, won’t cooperate with my wishes… and that’s OK.

No matter how much there is to do.

No matter how much there is to say.

It will all have to wait for another day.

Right now… all I am concerned with is getting some sleep. No matter how much I’d rather be doing a number of other things, I need to listen to my body. It is screaming out for sleep. So, I am going to listen. Off I go to do just that…

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

January 10, 2012   4 Comments

Basic Functioning Mode

My online time has been extremely limited due to many factors. The primary reason is that I’ve been unbelievably busy in this way…

Gone Fishing!

(Image above via Cool Text)

It’s a joke. Just a joke!

Just kidding! I know… It’s a wee bit early for April Fool’s jokes, isn’t it? Seriously, though, even if I were an ice-fisher-woman (which I can assure you that I am most definitely not), I wouldn’t be out fishing now. No way! I’m lucky if I can walk to/from the car without my fibromyalgia and Reynaud’s announcing to me who’s boss. Trust me… they are the bosses!

You won’t ever catch me doing this!

In fact, the single-digit windchill temperatures have been wreaking havoc on me as far as fibromyalgia pain is concerned. So, the last thing I’ve been dreaming of doing is ice-fishing!

In addition to pain in every possible corner of my body due to a fibromyalgia flare-up, I have been dealing with migraines that have been forcing lots of time in bed to get extra sleep. It has been extremely frustrating to get further and further behind on everything but I couldn’t have forced myself to be online more if I had tried. I am now in what I call “basic functioning mode”. That means much of what I like to try to keep up on daily has gone out the window indefinitely.

So, I just wanted to take a few moments to surface long enough to say that I am not really fishing, I am not on vacation (hahaha… I’m full of jokes today!), and I am not ignoring my wonderful online friends. I am sleeping far more than usual, coping with incredible pain, and trying to be as productive as possible at a time when my body protests at nearly everything I try to do.

I believe showers tend to be under-appreciated until they become difficult to come by…

For example, one of my biggest accomplishments today was (gasp!) taking a shower. My husband located the shower chair that was stowed away in the basement (due to my history of falling and/or fainting in the shower at times like this). Thanks to that chair, I did it. Who knew taking a shower would ever be such a massive accomplishment? Three cheers for being clean!

When I’ll be up to writing again remains to be seen. As frustrating as it is to me when I am bursting with ideas to write about but unable to do so, I need to give my body time to recover from the holidays and adjust to the weather changes that are causing a sharp increase in fibromyalgia pain. I am dealing with the migraines as best I can. One day at a time.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

January 6, 2012   8 Comments

Eight Is Enough…

Eight is enough! No, I’m not talking about the television show from the 1970s called Eight Is Enough and, yes, I’m aware that many of my readers are too young to even know what show I’m talking about.

When I say “eight is enough”, in this case, I’m referring to the number of consecutive days I’ve had a migraine. Eight is really enough. I had a few migraine-free days before that and another 8-day migraine prior to that. I’m hoping to wake up tomorrow and find that 8 was the “magic” number this time too.

Of course, given what’s happening with my hormones combined with the fact that I have an abscessed tooth, I may be engaging in wishful thinking. Hopefully the tooth extraction this Thursday will help regarding migraine triggers. In the meantime, my blood pressure is spiking every time I have a migraine.

I just wanted to take a moment to check in here. Other than those who have seen me pop up occasionally on Facebook, most of you haven’t heard much from me in awhile. (Popping up on Facebook simply takes less time and energy than writing blog posts). Thank you for your continued patience.

By the way, yes I know the number 8 on that golf course sign above is upside down. Everything seems upside down lately. (We’re working on that last one). So, I thought this photo was perfect for now.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

October 3, 2011   8 Comments

Who Knew One Abscessed Tooth Could Cause So Much Grief?

As I mentioned previously, I have an abscessed tooth that needs to be extracted. A root canal was attempted on this tooth awhile back but due to the unusual nature of the tooth, it was not possible to do a successful root canal on it. (The instruments were bending and it simply wasn’t possible to go any further). Two endodontists later, I have been referred to an oral surgeon to have it extracted.

The green number 29 above refers to the tooth number affected. The green arrows and number 2 below indicate that this tooth has two roots despite the fact that it is not a molar. (It should only have one root). The yellow arrow points to the tooth behind that one. It is marked with a crown symbol because it has a crown on it. The red arrow points to the abscessed area beneath tooth number 29. The blue arrow points at the tooth in front of tooth number 29. Last but not least, the purple arrow above all three teeth indicates where a bridge will go (over the three teeth). I’ve been told that it may take months for the area to heal sufficiently following the extraction before the bridge can be installed. (The crown will come off and the bridge will sit where it is now).

Having had two previous extractions where anesthesia failed (and I felt everything!), I have been very nervous about having another extraction. On top of that, out of the four colonoscopies I’ve had, for two of them the IV sedation failed and I felt everything. (For the other two colonoscopies, the pain wasn’t as bad but I never got sleepy – the way the hospital staff kept telling me I would/should).

To make a long story short, my dentist sent a letter to the oral surgeon explaining why he believed general anesthesia would be appropriate in my case. Thankfully, the oral surgeon “gets it”. Since he is the chief of the oral surgery department and since his office suite is located right in the hospital building, it will not be necessary to use an operating room. (He has everything he needs right in his office and he can administer the anesthesia). This will cost far less money than having general anesthesia in the operating room. It will be done as an outpatient. The figures I was given by phone were far higher than reality. He apologized when he learned of the figures his staff had given me and told me that I had been “misinformed”. What a relief that it is far less money than I was told initially and that he’ll be using a general anesthesia medication.

In the meantime, I recently had a migraine for 8 consecutive days. I don’t think the abscessed tooth helped matters any. (My primary care physician was telling me last week about how my dental issues could affect the migraine pain).

Now that my migraine is gone, my blood pressure has stabilized. It had gotten quite high during the migraine. My primary care physician instructed me how to tweak the dose of my blood pressure medication (something I need to do based on where I am at in my cycle). Right now, I’m on the usual dose. I don’t want to double the dose unless I really need to. Plus, altering the dose may affect my Reynaud’s.

In any event… between the migraine for over a week, the abscessed tooth, the appointment that got squeezed in because my PCP wanted to talk (in person) about the blood pressure spiking up and down, and other medical appointments, I have been feeling drained and overwhelmed. I will be happy to get this extraction behind me (scheduled for early October).

To say that I am behind on replying to emails, blog comments, and Facebook messages would be an understatement. I can count on one hand the number of blog comments I have submitted in the past month or so. I appreciate everyone’s patience. What I’ve described in this post is really just the tip of the iceberg, I’m afraid. I really dislike getting backlogged on messages. While I know that other people who have chronic illness(es) understand, it still overwhelms me when things get as backed up as they are now. Thank you all for your understanding.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

September 24, 2011   6 Comments

When Your Ouch Lands You On The Couch…

Sometimes with chronic illness and chronic pain, we have to rest whether we like it or not. While it’s frustrating not to be able to do the things we’d like to do, it’s important to listen to our bodies and heed the warnings. So, while I have so many ideas spilling out of my head I don’t know what to do with them, I need to rest right now.

That means I need to stay offline until things stabilize. Besides, with all of the calls I need to make to health “insurance” and dental “insurance” companies, there’s not much time left to be online. (For those of you who aren’t connected with my Facebook account, I had a failed root canal for which I’ve seen two endodontists). The tooth cannot be saved.

It needs to be extracted. I have a history of incidents where anesthesia failed (including two previous tooth extractions). So, a simple extraction is becoming quite complex and the cost involved is frightening. I’m not sure how long I’ll need to curtail my “online time”. Right now, I’m waiting for a migraine to clear and it has caused my blood pressure to spike. I will be back online as soon as I can. Thank you for your patience.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

September 13, 2011   5 Comments

Major Migraine Month

The best way to sum up the past month health-wise is:
My head hurt every day.

The migraine pain (over the past month) has ranged from mild at times to very severe at other times but it has never left completely (except for about three hours one day and for a couple of hours another day when I thought it was leaving but it quickly came back full force – even harder than before).

Sensitivity to light and sound have been severe all month. Sounds I normally wouldn’t be bothered by are very painful to my ears and head. I have had waves of nausea coming and going. Occasionally one eyeball will hurt for about two to three hours before dissipating.

Yesterday was the lowest level of migraine pain I have had since March 31st. I started to think the migraine was finally lifting. When I woke up today, my head was still not normal but I would no longer call what I have today migraine pain. I believe that I am now in the postdrome phase described here. I am hoping that my head will feel 100% normal soon. It has fooled me before but I think it’s really lifting this time. Time will tell.

Unfortunately, I don’t have the energy to write in very much detail about what has been happening with my migraines these last few months. In a nutshell, though, I was having some reduction in the number and frequency of migraines (after starting both physical therapy for cervicogenic triggers for migraines and acupuncture to treat migraines). I was still getting migraines but they weren’t as bad once I had started the cervicogenic migraine physical therapy and acupuncture focused on them. I was grateful to have some improvement. I knew there was no quick fix and that any improvement was worth appreciation.

Prior to starting physical therapy and acupuncture for migraines, I had noticed patterns in the timing of my migraines that suggested hormonal fluctuation is one of the major migraine triggers for me. The wonderful physical therapist who has been working on treating the migraines triggered by cervicogenic issues thinks I need to talk to my doctor about the hormonal situation. I plan to do so in my next appointment with my primary care physician (next week).

In the meantime, I saw the neurologist Thursday and it was an enormous waste of time. It was difficult for me to drive to/from that appointment. (If I don’t feel like it’s safe for me to drive, I don’t… no matter what I have scheduled. It’s not worth risking an accident). For nearly three weeks, I didn’t even feel it was safe to drive around town – much less to an appointment an hour away. Thursday was only the second time in a month that I had driven for more than five minutes. The amount of time, money and energy that were utterly wasted on that appointment totally frustrated me. That tale is far too exhausting for me to relive at the moment but the good news is that the brain MRI (looking for multiple sclerosis) yielded normal results. Maybe someday I’ll have the energy to get into more detail regarding why I believe the neurologist appointment Thursday was a waste of time.

I haven’t been online much but on the rare occasions that I have, I’ve gotten great support from other people who experience migraines. Let’s just say that apparently I’m not the only one who has experienced difficulty in finding a good neurologist for treating migraines. Thank you to those of you who have reached out to me regarding your own experiences with and knowledge of migraines. I really appreciate your support.

Now, please bear with me for going on a tangent about sleep apnea treatment… I had previously mentioned in passing the difficulty I have had finding a CPAP headgear to treat my sleep apnea. I got a new CPAP headgear on March 24th. I was very excited that (after years of unsuccessfully trying to find a headgear that my head could physically tolerate – no matter how carefully I screened out ones with materials I have a known allergy or sensitivity to), I had found one my head could physically tolerate (no sores on my head due to a reaction to the material of the headgear)! The fact that I had finally found one (pictured) that I wore night after night with no adverse reaction on my scalp was the good news.

Click for photo source.

The bad news is that the daytime fatigue and sleepiness I have experienced in about the last month (despite having gotten plenty of sleep at night… more than usual, in fact) has been so severe that I decided about a week ago to try not using the CPAP for awhile to see if the fatigue improves. (I am currently trying to determine whether the new plastic tubing for my CPAP machine might be out-gassing chemicals that are exacerbating my multiple chemical sensitivity, whether the fatigue is migraine-induced, or both). Since stopping CPAP about a week ago, the fatigue has improved a bit. However, the migraine has improved in that time too. So, it remains to be seen what caused the incapacitating fatigue and sleepiness I have been experiencing in the past month. I would very much like to go back to wearing my newest headgear, pictured above, if I can rule out the plastic tubing that attaches to it as causing any of my fatigue and sleepiness problems in the last few weeks. I know the risks of untreated sleep apnea (i.e. that cardiovascular trouble has been found to be up to three times more likely):

Click for photo source.

Needless to say, I am anxious to resume treatment for the sleep apnea since I don’t wish to increase my odds of having cardiovascular trouble. I’ve tried running the CPAP machine when I’m not wearing it to flush out the plastic tubing but I’m not sure how much good that has done, if the tubing is causing symptoms. I washed the tubing with distilled water, as directed, before using it. Other than allowing it to air out over time, I don’t really know how I can get it to out-gas more quickly.

Hopefully, the fatigue is from the migraines and not the CPAP tubing and I will be able to resume wearing my CPAP headgear soon.

My husband reports my snoring had stopped when I was using CPAP. According to the doctor who ordered the sleep study that diagnosed the sleep apnea, treating that should help the symptoms of all of my illnesses (since it’s not healthy to stop breathing throughout the night). The sleep disorder clinic had told me when I was diagnosed with obstructive sleep apnea that they recorded zero restorative sleep for me. Zero. I hadn’t had dreams in many years because I never reached that stage of sleep. With the CPAP machine, I was having dreams. That tells me I was getting into a deeper level of sleep than I had in years. Yet I was more tired than ever when I woke up each day. So, the trick now is to sort out whether the new plastic tubing is out-gassing chemicals that are causing the fatigue and sleepiness or not. In the meantime, I am seeing how I fare without it. Since the severe fatigue and sleepiness started right about when I started the CPAP and right about when this most recent migraine started, it’s hard to know for sure what’s the cause.

Managing the migraines and sorting out whether the CPAP machine is or isn’t causing the severe fatigue/sleepiness are what I’ve been focusing on lately. Other factors have prevented me from being online very much as well. Thank you for your patience. I am going to try to resume a more typical schedule for blog posts as soon as I am able. Several of you have sent me messages asking how things are going lately. I appreciate you thinking of me and would like to thank you for your support.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

April 30, 2011   12 Comments

Migraine Denial and Ostrich Syndrome

My blog has been updated much less frequently lately. There are numerous health-related reasons for that and other reasons that are not health-related.

I wanted to do a brief post to explain one reason I have been scarce lately. Normally, I am not one to bury my head in the sand. At all. However, I will not lie… I have been very reluctant to add another diagnosis to my long list. So, I have been in some degree of denial. Alright, I now see it has most likely been a large degree of denial about one thing in particular… migraines.

Photo by Deborah Leigh.

One of several reasons I was forced to take a nap for several hours today was yet another migraine. Since all of my migraines are happening at period time, I believe hormones are a big factor. Since I had three periods last month (yes, I said three!), I was treated to three separate migraine episodes. (This three-period month was actually instrumental in dismantling my migraine denial. This month – now – the onset of my migraine directly preceded my period yet again). Whether this even-more-bizarre-than-usual cycle is perimenopause or not remains to be seen but I have no doubt that hormone fluctuations are affecting the migraines that I didn’t want to see when I was in Ostrich Syndrome. (Did I mention that I am emerging from Ostrich Syndrome?)

Due to my denial state, I have tried to explain away (to myself) what has been happening as “sinus headaches” or “stress headaches”… despite what my doctor told me awhile back. I was actually shocked tonight when I looked up the post I wrote about that encounter (with my primary care physician) because of how long ago it took place. It was in January! I had this notion in my head that this has been going on for six months at most. Really it has been going on the whole year. This just reinforced for me that I have been in denial. See previous post from when the symptoms started here:

Ten months is an extraordinarily long time for me to be in denial regarding a medical condition. As I said, I am not usually an ostrich. However, I have come to the conclusion that I have been in migraine denial. Goodbye, Ostrich Syndrome. Greetings, reality!

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

November 9, 2010   9 Comments