I never had allergies as a kid. They first hit me in my twenties after I moved to Reno. I was tested, and at that time I was allergic to grass, dust, and dead moths. Well, grass and dust are rather ubiquitous. In Reno the grass pollen season runs from February until November.
Now with ALS, I can’t blow my nose or cough so I rely on my cough assist and suction machines and lots of Kleenex, which I use to catch my runny nose. But I am active too and it is not convenient to haul the machines around.
I was blessed with the last two Sundays in a row on the beautiful shores of Lake Tahoe. For a long time I have noticed a pine allergy because my allergies are usually even worse up at the lake. I wouldn’t give up those afternoons spent with family and friends but I pay a price with allergy symptoms.
The ALS Association published an Ask the Doc: Q & A about allergies and ALS with Edward Kasarskos, MD, PhD, director of the ALS Center at the University of Kentucky. You can read it here.
Dr. Kasarskos says hay fever is particularly difficult for ALS patients who can’t cough up secretions or swallow effectively. He recommends:
- reduce exposure to allergens by closing windows, special filters for cooling and heating, and frequent vacuuming to minimize indoor dust and pollen.
- keep hydrated to help thin your secretions. Use nasal sprays to moisten mucous membranes in your nose.
- talk to your general practitioner about over-the-counter medications you can use, such as Claritin or eye drops or nasal sprays.
- Check with your pharmacist for drug interactions.
- Allergy shots may be an option but they can take months to be effective.
- If you use a Bi-Pap, be sure to use humidified air.
- Use cough assist.
This is all good advice, but the realities of it are not fun. First of all, my husband is always overheated and he likes windows open in the morning and at night. Second, staying hydrated and using nasal sprays and decongestants causes post nasal drainage that settles in my esophogus. Claritin helps keep my nose clear but does not help sinus drainage. So I have a choice between sinus headache all day, or post nasal drip all day. For the first time, when suctioning, I have had to use the small tubes that go all the way down my throat. Since I am not used to it yet it makes me gag and it makes my eyes water.
I was out to lunch with my friends Melissa and Sabine and I had my lunch and took my ground-up decongestant/exportant after. I also did multilple flushes to keed hydrated. Suddenly, I had mucous pouring down my throat making me nausous and my mouth was full of mucous and it was pouring out of my nose. I went through a ton of paper napkins for my nose and I kept wiping my mouth out with my napkin. Melissa called Stan who came up to the restaurant and by the time he arrived the decongestant had dried me out pretty well. I was rattled by the stress of that and thankful that I was with good, understanding friends.
Another problem is that the allergy meds also dry my eyes out. So I use eye drops, and I need them frequently.
I am anxiously awaiting a hard freeze. We have a cold front right now, and I just got a severe weather email saying that a freeze warning is in effect for tonight (Friday Sept 22, the first day of Autumn). This is very early for a freeze but I will take it.
Another problem is that the allergy meds can make my mouth uncomfortably dry. Also, all these allergy issues make me very tired.
I don’t mean to complain and I am not looking for sympathy. I only want to show how difficult allergies and ALS can be.
We did make some progress on my Radicava appoval – my insurance company approved it and we met with a surgeon to install my port, hopefully next week. These approval calls always come on Friday, so I have to wait through the weekend to make more progress.
We also met with Social Security and found out that I will get nothing. I could pay for Medicare Parts A and B. But we decided to continue with the school district insurance that I can pay for since I got disability retirement from them. We also found out that Stan can apply for disability retirement, which won’t be as straightforward as ALS. He has sarcoidosis and we have a lot of paperwork to gather before next Friday, his next appointment. He will actually get more per month than he would if he takes regular social security at 62. So the extra work this week will be worth it.
I hope I am close to the end of trying to reason with allergy season. But usually that comes later. At least I am closer to Radicava.