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CPAP HELL.

To those of you out there that use a CPAP machine successfully, I applaud you. So far, my experience has been a little slice of hell.

I picked up the machine and was fitted for the mask last Friday. She gave me a “nasal pillows” mask, which fits into your nostrils, but does not cover your mouth. She didn’t ask me if I had allergies or nose issues and I had done zero research, so, I had no idea what to expect. For the rest of Friday night and all day Saturday, there was pain and pressure in my sinuses behind my cheekbones and under my eyebrows. My nasal cavities swelled up to the point that I couldn’t breathe through my nose. It felt like someone had stuck a hose blowing pressurized air up my nose ~ oh, because SOMEONE HAD STUCK A HOSE BLOWING PRESSURIZED AIR UP MY NOSE! Godawful. That got me doing research. I can look forward to sinus infections, upper respiratory infections, dry throat, swollen and sore nasal cavaties, bloating, burping, farting, sores and indents on my nose and cheeks, stiff neck from the S&M-type headgear, the inability to move in my sleep, having to purchase gallons of distilled water every week, dry eyes from the air vent, constant waking from the noise of the machine, 20 minutes of intensive cleaning every day to lower the chances of infection, and a HUGE BILL that never goes away because you have to replace all the components every couple months.

But, both my GP and the Good Doctor were incredibly excited that the sleep study found something that might help my plight, so I’m trying to remain positive. After doing tireless research for 4 days, I went back on Monday afternoon and got a different mask that covers my nose and mouth, thinking that would do the trick if my nose was stuffy. My husband bought me a basin, sponges, dish soap, and distilled water. I washed everything carefully. I read all 3 user manuals. And, last night, I descended into CPAP hell. The headgear pulled my hair and, in order for there not to be leaks under the mask, it had to be so tight around my neck at the base of my skull that it felt like the Pulp Fiction ball gag or some sort of medieval torture device.

I fiddled with the mask until 1am, taking it on and off, smooshing it left and right, up and down, tighter and looser. It doesn’t matter that it is a full fask mask, you still can’t breathe through your mouth because your cheeks fill up with air and flutter. Then I fiddled with the hose for another half an hour: off the side of the bed, under my pillow, under the covers, over my shoulder. I fiddled with the machine for another half an hour: humidity up, humidity down, hose warmer on and off, exhalation easier and harder, ramp up, no ramp up… And then I tried to sleep to no avail. I was hyper-conscious of the sounds, of not moving, of causing a leak, of the position of my neck… The machine kept revving. I don’t think it’s meant to do that. It would be a continuous soft pressure and then REV into higher pressure, but only for a second. Every time it did that, I came awake again, plus I had a bad pain in my stomach, my guess is due to swallowing air. At 3am, I pulled the thing off. But, the damage was already done to my precarious brain. It was like I had watched a horror movie and drank a quadruple espresso right before bed. I never quite went to sleep, I had fitful dreams about failing at tasks and dying from illness.

Today, after three really good days, I feel terrible. I’m shaky and I can’t breathe well and my neck is tweaked and my head is killing me. I may try again tonight, but I’m scared now. Literally, scared. The night before last, I had the number one best night sleep of the year. 9.5 hours and only a few times waking up. I was on the upswing. My symptoms are incredibly compounded by poor sleep, so I’m not very eager to try again and have another tortured experience.

My Dad warned me about this. He suggested a dental device that helps sleep apnea. I already wear a mouth guard, so that might be an easier transition. I shall call my dentist tomorrow.

Father knows best.

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So, this is it.

Today I went for a follow up with the infectious disease doctor that I saw in May before I had to leave my job. I wanted to ask him about a few things that have been rattling around in my brain, namely: Could I have caught something from my dogs (through squirrels or birds or whatever)? Does he not think I have some sort of virus since I have a daily sore throat, hoarseness and low grade fever? What does he think about antivirals to treat Epstein-Barr virus (EBV) and/or cytomegalovirus (HCMV) and/or HHV6? I also ran Guillaine-Barre and bacterial endocarditis (SBE) past him and asked him about vaccines.

He is a wonderful, knowledgeable doctor and he took the time to explain things in detail to me, but I’ll sum it up by saying I am grasping at straws. He said, point blank: “You have chronic fatigue syndrome and, from here on out, you should work on treating the symptoms. Patients can get better, but they never get back to where they were before being sick.” It was very final. It left me feeling empty. This is it. I’ve spent a year researching, reading, going to doctors, getting tests, asking anyone and everyone for help and advice and ideas… It’s time to move on. This is it. It’s long term and I need to move on with treating my symptoms and stop searching searching searching…

Regarding the other stuff, the ID doctor said they had ruled out active viruses and, in his opinion, mostly ruled out autoimmune problems, so, what is left is allergy — immune activation/allergic response. His experience (and what the medical community knows) is, a virus triggers CFS but then the virus is long gone and I’m left with the body’s ongoing response that causes the symptoms. So, antivirals will do no good and antibiotics definitely won’t. He is the 4th doctor to tell me there is no way they would throw broad-spectrum antibiotics at a patient without any clear target – especially in CFS patients where side effects can really cause hell. I have tested positive to past infection or exposure to EBV, which most of us will (and I had this test done years ago with the same result, so I know this didn’t cause me to get sick, although you can get reactivated EBV) and he said I am negative for HCMV, which many people aren’t.

He doesn’t think there is anything that the dogs could have given to me, I would be paralysed and hospitalized if I had Guillian-Barre and I’d be dead if I had SBE (he said, before antibiotics, SBE was one of the few infections that was 100% fatal. People might survive rabies, for example, but not endocarditis). Finally, he said my husband should get a flu shot ASAP because flu would be “very bad for you” and that I should never get any vaccines until I’m over 65 and then reassess. Wow.

I also had a follow-up with the Good Doctor. She is the one who will be helping me with symptom management going forward. Since I spent three weeks “washing out”, I am going to add in one thing at a time, very carefully. We’re starting with foods, moving to supplements, then we’ll tackle other things down the road, like heavy metal testing, hormone testing, Chinese herbs for Gu Syndrome, even medical marijuana… Anything!

I added back in rice last week and, yesterday, I added back eggs. I’m pretty sure I had a reaction to the egg, so I’m going to steer clear of them for now. I was feeling almost great (yes, I said great. Yesterday afternoon was really the best I’d felt in months) and, within half an hour of eating the egg, I had a raging headache. And then I had allergy-type symptoms in my nose: runny, stuffy, swelly etc. (although, that is still with me today and could just be me ~ or maybe I’m finally getting the cold that’s been threatening for a year.) Thursday, I add back dairy, then corn, then tomatoes, then legumes…other grains… If/when I want to start the Lyrica, I do it three days after the last add-in and three days before the next.

She also had the results of my stool sample (how long did that take? Three months?). No parasites. Inflammation not as bad as she thought it would be. Yeast levels not good and, even though I take a too-expensive probiotic every day, the good bacteria in my gut are nonexistent. She said “this is actually quite concerning”, so I have a new probiotic to order and, after that, she is going to start me on herbal supplements to combat the yeast. I’m staying on the ferrous gluconate (watch out, iron causes constipation – who knew?! I thought it was from coming off the pill) and, down the road, we’ll add magnesium and zinc and the other supplements.

Gratitude today is given to last week’s headache: You were SO ALL-CONSUMING AND PAINFUL that I never gave one thought to my first period in nine months.

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The Evil Calcium Headache

Ok, I’m back in the land of the living. I can’t describe the last week adequately. I considered going to the ER about once every ten minutes, but I knew they’d want to do a lumbar puncture and I knew I wouldn’t let them (because of aforementioned LP that didn’t heal properly), so I stayed put in bed. Head pain, I think, is the most debilitating pain there is. It takes away all your senses. You can’t open your eyes to light, you can’t move your eyes up and down because it hurts too much, you can’t stand noise, you can’t chew, you can’t stand people touching you or talking to you… you can’t even be upright. At least with most of my back pain I can watch TV. The other day, I was talking to my husband on the phone, telling him how bad the pain was on the right side of my head. As we spoke, I felt it zig zag over to the left. It was bizarre. It was like I could feel a little pain worm traveling through my brain to the other side. I had just said, Thank god half my head is out of pain~ it makes it more bearable. As I finished the sentence, the pain had completely switched sides. That night, the pain radiated down into the right side of my jaw for about an hour. Yesterday, it was pretty much gone except a residual cramping. Every time I tensed something ~ coughed or pushed my pee out too quickly ~ the right side of my head would light up. It was like somebody blowing on embers. It would erupt into fire briefly and then go back to smoldering again.

Now, here’s the kicker. I realise it makes sense to say it’s another unexplainable symptom of ME or it’s because I came off the pill or it was just a ridiculously bad migraine, but I’m pretty sure it was from my calcium supplement. That was the only thing that changed. I started taking powdered calcium citrate in OJ, thinking I was being so responsible. My husband was googling help for me and saw that too much calcium and too little magnesium can cause headaches. Then I found this site. If you don’t want to read all the comments like I did, I’ll sum it up: one person after another saying their calcium supplement caused terrible headaches. Many of them saying they got the worst headache of their lives and that it was all on one side. Mine was invading my entire head for many of the days, but it was certainly only the right side the last two days. YOU FOUND THE CAUSE! I whispered to my husband, but my eyes said block capitals like that: YOU SAVED ME! The pain started to ease up a day after I stopped the calcium and it was gone two days later. Be warned, everyone! Especially if you have one of these sensitive systems (a blessing and a curse).

Now my dilemma is how to keep my bones strong since I have osteopenia, don’t eat dairy, don’t do weight-bearing exercise, I’m petite and had hyperthyroidism for years (the latter two my doc said contributed to osteopenia in the first place. The dairy and exercise, obviously, are omitted because of ME). Honestly, though, I’m not touching a calcium supplement for a while. I’d rather live in the now without a headache.

I’m grateful I don’t have a headache!!!!!!

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Worst headache of my life… and I don’t say that lightly.

I had a lumbar puncture years ago that didn’t heal properly. That was the worst headache of my life until this week. I can’t explain the pain of the last 5 days. If I had a job, I couldn’t go to it. If I had a child, I couldn’t tend to him/her. Hours upon hours upon hours lying down with a cold cloth over my eyes. Hours of weighing the odds of taking painkillers and the potential for bounce-back headaches and lower pain threshold or just powering through. I haven’t been able to power through at night. The pain has woken me up every night this week. I’ll be drenched in sweat and panting, my head being crushed on one side, my eye coming out of its socket. I’m scared, not gonna lie. It feels like the MRI should have shown a vice around my brain and an icepick through my temple and some dead soft space at the base of my skull and a huge pool of concrete where my forehead should be and one eye twice as big as the other. It still hurts now, so this is just an update and then I’m going back to bed.

To those of you that have called, texted, sent letters, sent presents (yes! Can you believe how lucky I’ve got it?), thank you!!! Your thoughtfulness and words of encouragement mean so much more than anyone can fathom. I truly don’t think I’d be strong enough to do this if not for you all. When this headache goes away, I’ll try to get back in contact with the world.

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Buffers can help, but sometimes not enough…

My brain MRI was fine. No evidence of MS, no sign of something causing my headaches. My c-spine MRI showed that I have mild intervertebral disk space narrowing and mild central disc osteophyte complex, centered at C4. I won’t go into the history of my neck problems, but if this is “mild” I feel very, very sorry for anyone with moderate or severe problems. When my neck has “gone out”, the pain is 10 out of 10. It is like nothing I’ve felt before. Can’t lie down, sit down, move arms, head, back… I’ve showed up at the doctor’s office twice at 7:30am, without an appointment, crying and begging for help. Both times they gave me injections in my butt that knocked me out for almost two days. I guess, if the bone problem is mild, the muscle problem can still be severe. My physical therapist said I had the worst case of hypermobility in my neck that she had ever encountered. It must have been from all my head banging, rock ‘n’ roll days and all the extreme sports I played. That’s sarcasm. I didn’t do anything!

My neck first went out a week after a particularly bone-rattling roller coaster called The Iron Wolf. It was a stand-up roller coaster and they had head buffers on both sides to minimize injury as you were being tossed around. I was too short for them to buff properly, though, and my head and neck took a battering. My brain felt blended. One week later, I tried to get out of bed and couldn’t. The neck pain was excruciating, radiating down my limbs. I was so unfamiliar with bone/muscle pain, that I thought I was going to be paralyzed. I thought my spine was fractured or something. I lay there for hours with tears running into my ears, waiting for my husband to get home. That one healed on its own since I had no health insurance at the time, but I’ve had problems ever since. I guess I did go into the history of my neck problems, after all!

Anyway, back to the present: I added back in rice to my diet with no adverse effects. Unless this exhaustion and pain are caused by the rice?? Haha. Just kidding. I’ve added flax to my smoothies and started taking the zinc and ferrous gluconate supplements. The latter is meant to be taken 1 hour after food and 2 hours before food and, let me tell you, it is VERY HARD for me not to eat for 3 hours, so I’m cheating a bit on that one.

I stopped taking the birth control pill yesterday. My headache is all day, every day and is crippling me. I’ve spent a lot of time lying down in dark rooms in the last 3 weeks, my face is permanently pinched, I can’t deal with too much light or noise. I am constantly alternating epsom salt baths, ice packs, arnica, IcyHot spray, TENS unit, meditation, breathing exercises, anything I can think of to ease up my neck and back muscles and hopefully help the headache. After much research on my headache support group forum, I’ve convinced myself that it is caused by the pill, so I am going go stop taking it for a month and see what happens. I also want to quit the pill because I’m extremely sedentary and that contributes to the risk of blood clots (and being over 35 years of age). I actually think I would prefer any other pain to this headache (except for maybe the aforementioned 10-out-of-10 neck pain… and, when my period hits, I’m sure I’ll amend that statement).

I woke up full of gratitude this morning. There are people out there dealing with this and other illnesses with little to no support, starting their journey with so much less than I have. My heart breaks for them. Without my income, I am terrified of losing our house, our savings, our health insurance, but I could have started this illness with no house, no savings and no health insurance. What do people do? I am blessed and grateful to have a slight buffer. Like The Iron Wolf’s buffers, it may not be enough to save me down the road, but, for now, I can ride the roller coaster.