So, I know I've never really been well. But this week has been dramatically worse. Suddenly, I am as sick as I was at my very worst point. I was in the ER on Wednesday, but they couldn't help. I had to come down to stay at my mom's house, and I haven't even been able to change clothes since I got here. I am so severely limited.
I sent an urgent email to Dr. B yesterday. Here's what I wrote:
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Hi Dr. B,
I'm sorry to bother you. I know you're very busy.
This is Carolyn [Last Name]. My last surgery was a CCF-R in August 2010. Since January, I've had an increase in migraines, digestive problems, and swallowing problems.
This week, I have had a sudden decline. I'm having double vision, loss of balance, nausea, loss of appetite, dilated pupils, extreme tachycardia, vision in and out of focus, twitching, weakness, narcolepsy, falling when walking, and weakened voice. I realized that wearing my old Aspen collar reduces the intense migraines/facial pain and nausea. I've had 2 recent blackouts. Most of these symptoms have become so intense so quickly that I am worried something is wrong. I'm suddenly having trouble getting out of bed, after being active for over a year.
I feel that I need help right a.s.a.p.
Thanks.
Carolyn
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I received a response this morning at 4:58 a.m. Dr. B wrote that I need a follow-up appointment with him. Then he listed x-rays and mri's that I need to have done. The nurse and the scheduling person will be contacting me soon.
I know that this will need to be dealt with in the immediate future. It is so dramatically different than even my worst days within the last year. It's not just bad migraines and bad POTS. It's a massive change in my neurological state. My ability to eat, talk, write, and walk have all be severely impacted.
I'll update when I know where the tests will be done and when I'm going to NY. I honestly hope that it will be very, very soon. I can't believe my life has reverted to this so quickly. I'm anxious to get something done about it right away.
Friday, May 25, 2012
Wednesday, May 16, 2012
May update
Well, I have a few things going on this month.
First, on May 6, I came down with a fever of 104*. This is highly unusual for me, because my normal body temperature is on the low side, thanks to my POTS. I never get a fever, whatever the infection, virus, etc. I never get fevers. Since May 6, I've had a temperature around 100*-101*every day. I don't seem to have symptoms, outside of a mild sore throat and a hoarse voice at the end of the day. I'm thinking I'll have to see a doctor, reluctantly, on Friday, if I still have a fever. The only thing I can think of is a second recurrence of mono. But I would assume that would come with a worse sore throat, and certainly some swollen lymph nodes. I feel dumb going to the doctor, when I feel like he won't find anything wrong with me... But the fever is super unusual for me, and making me super tired and achy.
Second, migraines are taking over my life. I have now had a migraine on these days:
May 8
May 9
May 11
May 12
May 13
May 15
May 16
I have been going to the headache clinic since January 6. We are still gradually raising the dose of my migraine prevention medication, Lamictal. They have been very cautious with the increase in the dosing. I'm still at a relatively low dose after 4+ months. I wish they would increase it faster to see if it helps in reducing frequency of migraines.
The other thing that seems to help is treating the migraine first thing in the morning, before breakfast, even if it's just a twinge of pain. This prevents it from becoming a full-blown migraine. The rescue medication I use, as soon as I think I am getting a migraine, has switched a couple of times. I've settled on Maxalt, because the insurance company will allow the highest number of pills per month of this medication. This allows me to treat as soon as I detect a migraine, which usually prevents it from getting worse and taking over my whole day.
Finally, I am still having ongoing digestive issues, although I've found a few things that have helped a bit. One is Magnesium supplementation, which helps with constipation. The second is Digestive Advantage probiotics. I'm still experimenting with these. I'm also experimenting with digestive enzymes and dietary restrictions. The constipation has resolved, but I still have frequent bloating and pain. My biggest culprits are dairy and vegetables. I've removed dairy (almond milk is fantastic!). But I can't remove vegetables without seriously impacting my health. I also skip red meat and fatty foods, but I've been doing this for years, so I don't think of it as a restriction.
So, there's still a lot going on. Just struggling through it, as always. Some days I manage a little better than others. It is often a monumental challenge to get dressed and teach piano lessons for a few hours each day, with a smile on my face and mock energy.
First, on May 6, I came down with a fever of 104*. This is highly unusual for me, because my normal body temperature is on the low side, thanks to my POTS. I never get a fever, whatever the infection, virus, etc. I never get fevers. Since May 6, I've had a temperature around 100*-101*every day. I don't seem to have symptoms, outside of a mild sore throat and a hoarse voice at the end of the day. I'm thinking I'll have to see a doctor, reluctantly, on Friday, if I still have a fever. The only thing I can think of is a second recurrence of mono. But I would assume that would come with a worse sore throat, and certainly some swollen lymph nodes. I feel dumb going to the doctor, when I feel like he won't find anything wrong with me... But the fever is super unusual for me, and making me super tired and achy.
Second, migraines are taking over my life. I have now had a migraine on these days:
May 8
May 9
May 11
May 12
May 13
May 15
May 16
I have been going to the headache clinic since January 6. We are still gradually raising the dose of my migraine prevention medication, Lamictal. They have been very cautious with the increase in the dosing. I'm still at a relatively low dose after 4+ months. I wish they would increase it faster to see if it helps in reducing frequency of migraines.
The other thing that seems to help is treating the migraine first thing in the morning, before breakfast, even if it's just a twinge of pain. This prevents it from becoming a full-blown migraine. The rescue medication I use, as soon as I think I am getting a migraine, has switched a couple of times. I've settled on Maxalt, because the insurance company will allow the highest number of pills per month of this medication. This allows me to treat as soon as I detect a migraine, which usually prevents it from getting worse and taking over my whole day.
Finally, I am still having ongoing digestive issues, although I've found a few things that have helped a bit. One is Magnesium supplementation, which helps with constipation. The second is Digestive Advantage probiotics. I'm still experimenting with these. I'm also experimenting with digestive enzymes and dietary restrictions. The constipation has resolved, but I still have frequent bloating and pain. My biggest culprits are dairy and vegetables. I've removed dairy (almond milk is fantastic!). But I can't remove vegetables without seriously impacting my health. I also skip red meat and fatty foods, but I've been doing this for years, so I don't think of it as a restriction.
So, there's still a lot going on. Just struggling through it, as always. Some days I manage a little better than others. It is often a monumental challenge to get dressed and teach piano lessons for a few hours each day, with a smile on my face and mock energy.
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