I've been posting less often than I've wanted to. Less often than I've promised to. I'm not going to beat myself up for it (even though I am internally). As usual there's a lot going on. Is this how it's always going be? I should know the answer to that question. Yes, it is.
I'm not just caring for myself as a physically ill individual, I also care for a physically ill son. I also have a mood disorder, and I use that in the broad sense implying the whole spectrum of moods that goes along with being physically ill: depression, anger, happiness, energy, etc. Therefore, mood disorder due to a medical condition. And, a son with a mood disorder, a true mood disorder, although he's doing so much better.
So, recently my new gynecologist wanted to try estrogen before going for the final solution (and I apologize for the use of that term if it is offensive to some but it seems appropriate in this sense). He gave me Lo Loestrin because "it's very lo estrogen with only 2 days off and you won't have those spikes of progesterone that cause your migraines or the side effects that you had on birth control pills before". I explained to him, I REALLY explained to him that I am VERY sensitive to medications and this was just not going to work out. He insisted. Okay, I would try it with an open mind. 5 days. That's what I was on it when the bruises on my legs showed up. My gums became swollen and started bleeding all the time, so much so that I couldn't eat or drink. I had blood clots in my nose. I had a bumpy rash on my face and flushing. I started a low grade fever. And, just a minor peeve compared to all these major concerns my hair looked awful! Mark commented "you'd think you had taken a blood thinner!" So I called the doctor's office and let them know I was stopping the med and starting Benadryl because the rash was a sign that usually started right before full anaphylaxis, but the other symptoms were concerning...and they are! They called back and said yes, to stop it, asked if the Benadryl had helped and "good" and to come back after I was completely better with a list of all the birth control pills I had tried before this one. He better not be thinking of putting me on another one!!! I will NOT allow myself to bleed out as if I HAD taken a blood thinner!!! I want the final solution, take it all out, hysterectomy please, I'm ready!!!
On another note, my son was in the hospital with a migraine. Even with my history of migraine, I've never been hospitalized, I've been to the ED many times, but never hospitalized! He had been home for a day on Tylenol and Zofran/Phenergan. The next day he still didn't feel better so I took him to the doctor for a refill on Fioricet and x-ray's of his neck to rule/out anything related to the EDS. We didn't get a chance to get the x-rays done because the tech was not there and I just wanted to get him home and treated. The next day, 3rd day, he still had the migraine so I just took him to the ED. They gave him fluids, Toradol for pain and Reglan for nausea by IV. The pain subsided a little, from a 9 to a 3, but he was still having photophobia and phonophobia with some pain. Since he can't use Depakote because of his mood disorder they decided to hospitalize him to do DHE treatment. DHE is usually done in a hospital setting because it can cause heart problems, intense nausea and other complications. I had DHE infusions at home and didn't tolerate it; it made me really nauseous and chest tightness. The neurologists explained that kids, generally, tolerate it better than adults. There was a point on the 2nd day after one of the doses where Ian just said "that helped!". I was so glad! He had been desperate in the ED, he had said "nothing is going to help, it's not going to stop". I knew that feeling so well. I've been there, pulling my hair and banging my head against the wall. My poor baby. We think this episode was triggered by dehydration and the smell of fish cooking. I sometimes get triggered by popcorn and spaghetti sauce. His Topamax has been increased to 2x a day and for now, as long as he has less than5 episodes a month he can continue on Fioricet. Also HYDRATION, HYDRATION, HYDRATION!!!
On a funny note, on the day he was about to get released Mark and I were on the phone and he says, sounding tired "I don't know why I just didn't sleep well". Ooohhh, I said "excuse me, YOU didn't sleep well?! Try sleeping on a pull out chair, in the freezing cold, getting up every hour because machines are beeping " IV occlusion" or the nurses are doing the IV checks, or "mom I need to go to the bathroom" which means unhooking him from the leads, pulse ox, the IV machine from the wall taking him to the bathroom then hooking him back up and doing this for 2 nights...And YOU didn't sleep well???" to which he answers "I love you". Funniest conversation ever! It's a good thing we can still laugh through it all :)
Tuesday, October 23, 2012
Tuesday, October 16, 2012
Mast Cell Activation Syndrome
It's been a while since I've written anything. A lot has been going on. I've still been really exhausted, unbelievably exhausted. I have doctor's visits just about everyday! Some aren't for me, some are for my son, but still, it's about every day. It's so tiring and painful.
Every morning I wake up as if I had been hit by a baseball bat...I HATE mornings. I wake up like the hunchback of Notre Dame and then have to snap EVERYTHING into place. First, my back. I move side to side until my low back pops in. Then, my neck; it hasn't been sounding too good and it's starting to hurt like heck again. I stand up and my feet have to get into place; sometimes it happens right when I stand up, sometimes it takes a few steps, but by the time I get to the bathroom they're usually where they need to be. But, by the end of the day, everything hurts again, especially the neck and shoulder muscles. The pain management doctor prescribed this wonderful magical topical compound ointment that really helps. It has steroids, cyclobenzaprine (Flexeril) and gabapentin among other magical things and within 5 minutes or so it has really taken the edge off the pain. I still have to take the Robaxin and Flexeril (cyclobenzaprine) orally but the ointment helps a lot, especially at bedtime!
So I've gone to an allergist to get tested for Mast Cell Activation Syndrome. The best I can describe it is: the body can respond as if in an allergic reaction to anything pretty much all the time. That's the short answer. I constantly carry an EpiPen and liquid Benadryl all the time. I take Zyrtec and Zantac twice a day, everyday and on top of that need Benadryl for something or other everyday. An allergic reaction doesn't mean anaphylaxis, it can be a migraine, stomach pain or cramping, hives or itching, vomiting, flushing, broken capillaries in the eyes, frequent urination and many other things. For example, I had a simple salad at Panera the other day: antibiotic-free turkey, romaine lettuce, pears, cherries, gorgonzola cheese, walnuts (which I took out just in case) and balsamic vinagrette. I only got to 3 bites! I ran to the restroom and vomited the gorgonzola. I ate no more and threw the salad away :( An hour later the area around my eyes was flushed as if I were wearing a red mask and my eyes were bloodshot. I started taking Benadryl. After two doses the flushing and eyes went away but the capillaries all over my face were visible and my face was mildly swollen. Fabulous!
Area around eyes flushed, capillaries in eyes have burst making eyes seem bloodshot.
After Benadryl face swollen, flushed and capillaries visible.
There are way too many things that I have developed allergies, or sensitivities to, to write them all down here, but some examples are: rice, milk products (cheese, yogurt, etc), yams, bananas, apple peels (but I can eat the rest of the apple), wheat products, shellfish/fish, beans...all narcotics, 3 different antibiotics...and the list goes on and on. Right now I have no protein in my diet which is becoming a serious problem.
I went to see Dr. Bernstein, at the Bernstein Institute to be tested for Mast Cell Activation Syndrome (MCAS)/Mastocytosis, but he was focused on "food allergies" and asthma aspect. From the get-go he said "you don't want to have that, besides it very rare". Duh, of course I don't want to have that! I also don't want to have EDS, but guess what!!! However, he did order the testing: 24 hour urine collection testing for histamine and tryptase and another test which looks at carcinoid type. Histamine levels came back at 550, normal high range are 450, and that was while on Zyrtec and taking Benadryl through the day!!! That's a definite indication of allergic reactions and would be proof of MCAS. Tryptase came back normal, however that means nothing since tryptase needs to be take 2-4 hours after an allergic reaction and mine was not. I think/know that Dr. Bernstein would say that histamine is high because if seasonal allergies or some ridiculous thing like that. Through a support group I started visiting, I learned that Dr. Andrew Smith, from the same Institute, had been a speaker at the Mastocytosis Conference, so I decided that since I was already uncomfortable with Dr. Bernstein, I would give Dr. Smith a shot; he may be more open to the idea of MCAS. Unfortunately, the follow up appointment with Dr. Smith won't be until November 21st even though I'm an established patient. That STINKS!
In the meantime, I'll have to continue with the Zyrtec 10mg 2x day, Zantac 150mg 2x day, Benadryl as necessary and dosages according to the reaction, carrying my EpiPen and avoiding triggers as much as possible since even smells can be triggers. I don't want to think about the possibility, but my son may have had a migraine triggered by the smell of fish cooking. I know he has facial swelling and asthma-like symptoms triggered by the smell of shellfish.
Flushing triggered by the smell of vinyl flooring.
Well, let's see what tomorrow brings :)
Every morning I wake up as if I had been hit by a baseball bat...I HATE mornings. I wake up like the hunchback of Notre Dame and then have to snap EVERYTHING into place. First, my back. I move side to side until my low back pops in. Then, my neck; it hasn't been sounding too good and it's starting to hurt like heck again. I stand up and my feet have to get into place; sometimes it happens right when I stand up, sometimes it takes a few steps, but by the time I get to the bathroom they're usually where they need to be. But, by the end of the day, everything hurts again, especially the neck and shoulder muscles. The pain management doctor prescribed this wonderful magical topical compound ointment that really helps. It has steroids, cyclobenzaprine (Flexeril) and gabapentin among other magical things and within 5 minutes or so it has really taken the edge off the pain. I still have to take the Robaxin and Flexeril (cyclobenzaprine) orally but the ointment helps a lot, especially at bedtime!
So I've gone to an allergist to get tested for Mast Cell Activation Syndrome. The best I can describe it is: the body can respond as if in an allergic reaction to anything pretty much all the time. That's the short answer. I constantly carry an EpiPen and liquid Benadryl all the time. I take Zyrtec and Zantac twice a day, everyday and on top of that need Benadryl for something or other everyday. An allergic reaction doesn't mean anaphylaxis, it can be a migraine, stomach pain or cramping, hives or itching, vomiting, flushing, broken capillaries in the eyes, frequent urination and many other things. For example, I had a simple salad at Panera the other day: antibiotic-free turkey, romaine lettuce, pears, cherries, gorgonzola cheese, walnuts (which I took out just in case) and balsamic vinagrette. I only got to 3 bites! I ran to the restroom and vomited the gorgonzola. I ate no more and threw the salad away :( An hour later the area around my eyes was flushed as if I were wearing a red mask and my eyes were bloodshot. I started taking Benadryl. After two doses the flushing and eyes went away but the capillaries all over my face were visible and my face was mildly swollen. Fabulous!
After Benadryl face swollen, flushed and capillaries visible.
There are way too many things that I have developed allergies, or sensitivities to, to write them all down here, but some examples are: rice, milk products (cheese, yogurt, etc), yams, bananas, apple peels (but I can eat the rest of the apple), wheat products, shellfish/fish, beans...all narcotics, 3 different antibiotics...and the list goes on and on. Right now I have no protein in my diet which is becoming a serious problem.
I went to see Dr. Bernstein, at the Bernstein Institute to be tested for Mast Cell Activation Syndrome (MCAS)/Mastocytosis, but he was focused on "food allergies" and asthma aspect. From the get-go he said "you don't want to have that, besides it very rare". Duh, of course I don't want to have that! I also don't want to have EDS, but guess what!!! However, he did order the testing: 24 hour urine collection testing for histamine and tryptase and another test which looks at carcinoid type. Histamine levels came back at 550, normal high range are 450, and that was while on Zyrtec and taking Benadryl through the day!!! That's a definite indication of allergic reactions and would be proof of MCAS. Tryptase came back normal, however that means nothing since tryptase needs to be take 2-4 hours after an allergic reaction and mine was not. I think/know that Dr. Bernstein would say that histamine is high because if seasonal allergies or some ridiculous thing like that. Through a support group I started visiting, I learned that Dr. Andrew Smith, from the same Institute, had been a speaker at the Mastocytosis Conference, so I decided that since I was already uncomfortable with Dr. Bernstein, I would give Dr. Smith a shot; he may be more open to the idea of MCAS. Unfortunately, the follow up appointment with Dr. Smith won't be until November 21st even though I'm an established patient. That STINKS!
In the meantime, I'll have to continue with the Zyrtec 10mg 2x day, Zantac 150mg 2x day, Benadryl as necessary and dosages according to the reaction, carrying my EpiPen and avoiding triggers as much as possible since even smells can be triggers. I don't want to think about the possibility, but my son may have had a migraine triggered by the smell of fish cooking. I know he has facial swelling and asthma-like symptoms triggered by the smell of shellfish.
Flushing triggered by the smell of vinyl flooring.
Well, let's see what tomorrow brings :)
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