Badly due update

I suppose I should post an update. It's been almost 8 months!

Well the week before New Years I came down with another sinus infection. One night I had a terrible migraine, the kind that made me be in the fetal position but wanting to be near a toilet at the same time...

Not having a car and knowing not eat else, I called an ambulance to come get me.

Fire department came and as they helps me out to the ambulance I throw up all over the concrete walkway.

At the emergency room I informed the dr that I had taken the following medications over the weekend: tramadol, trazadone, celexa, immitrex, and excedrine. I explained I was worried about seretonin toxicity.

Nurse said she was rushed that night and sent an aide in to draw blood and insert IV. He did a horrible job and even walked out of the room while I had the band on my arm still.

They ordered me morphine and reglan. I told the nurse I was nervous and that I hate taking morphine. He said "what's gonna happen? You're in a hospital."

Heart rate went up to 150 and I started shaking uncontrollably. Both nurses came in and looks worried. One nurse said to me "you need to calm down."

They have me ativan and I ended up falling asleep. My mother came and later told me that the nurse informed her I had a mild seizure.

Can everyone now say "Seretonin Syndrome" and "Malpractice"? Ok good!

Needless to say I will never go back to that particular ER again. I threw out my trazadone and immitrex.

A week later I was in antibiotics and my worries took hold. A friend gave me a ride to the ER where the doc gave me a full checkup just to ease my mind. However after two rounds of amoxicillin I wound up again at urgent care begging for my usual: steroids and super strong antibiotics. Knocked the infection right out!

A couple of things I've found out since:
Peppermint oil is a godsend for migraines. I rub some on my temples and it eases the tension right away.
I have to take a quarter dose of tramadol now since the side effects are too strong for me. Which is totally fine as long as it works.
I recently had a dx of patellofemoral pain syndrome. (pain in the knee) which is obviously EDS related.

And lastly, after years of being the one in the family who has these odd diseases I've been getting family members inquiring about both Chiari and EDS. I guess I'm not a hypochondriac after all! :)

more tests

Got some basic blood work done, turns out my Vitamin D levels are down. Anyways, I went in today to see the doctor and she ordered food allergy tests, a stool test for signs of bacteria in my stomach, and a celiac test. Gonna get my blood drawn this weekend.
Got a new RX for nortiptyline and singulair. And another referral to the neurologist, yay!

ALSO: the bedbug issue was a bit crazy, had to get a stupid RX just to relieve the itching. They are gone now, finally! still getting my apartment back in order :/
and I got a wonderful sinus infection in the middle of all that! steroids and antibiotics kicked that.

spider bites

got more now. 3 on my foot, two on my shoulder and one on my other elbow!. they are definitely spider bites because 1)I've had bedbugs before and their bites and they tend to be smaller and there would be more of them in one area such as my leg or something. 2) I feel a pinch and stinging feeling in the area I find the bite. 3) the middle feels hard and painful but everything around it itches. 4) It scabs over after like 5-6 days. 5) looks like bulls-eye bites where the middle is red and a little white then red again. 6) my mom helped me clean my apartment last week and killed like 5 spiders in the process...

I'm highly allergic to them and it sucks. 3-4 benadryl a night relieves the all over itching, tightness in my chest, and congestion. I still get itchy where the old bites are....

Physical Therapy:
Had my second to last visit with the PT last Friday. We attempted to locate certain core muscles and activate them. (IE clench specific stomach muscles). Realized that even slightly activating those muscles causes tension in my neck. So, PT gave me a few light neck stretches. Basically, he is concerned about the limited range of motion in my neck. Of course he gave me stretches where I look up and I was really nervous about that. But I'm realizing that it's safe now. Its been almost 2 years since my Chiari surgery.

Heat Intolerance:
Last week the summer started...The temps went about 85F. Of course I got dehydrated and ended up sick. Wound up at the doctors office where they gave me IV fluids and tested me for various things. I'm A-OK. My body hates the sun...I got a heat rash on my chest and face, and my body doesn't regulate the temps correctly when it's hot out. So I have to be proactive about that. Wear loose light clothing. Stay covered up and stay out of the sun. Also stay hydrated. I bought some loose long sleeves from Old Navy, all cotton. I'm wearing shorts so my body can breathe better. Also, a desk fan. Bought several Smart Water's because other waters make me want to throw up.

Allergies:
My allergies have been in full swing for a month now. Taking Benadryl and Claritin like theres no tomorrow. Flonase gives me a headache so the post nasal drip is still pretty bad since I don't use it. Due to the issues related, I've thrown up a few times.

Stomach Issues:
This part gets a bit graphic....
I ate lunch about 2:30, threw up 4 hours later. I noticed my lunch in it as well as food I had eaten the night before. Made me realize that I might just have that delayed gastric emptying thing that people with Ehlers Danlos sometimes have... I used to think I had heartburn or something cuz I'm nauseous pretty much every day. I just don't think it's because I have too much acid in my stomach.
When talking to others with EDS I hear a lot that our bodies don't handle some foods very well.


Bug bites:
Bug bites from hell! lol. Something is biting me and I don't know what, but I do know that I'm really allergic to it.




I have at least nine bites on my arms at this point... Needed four benadryl to stop the terrible itching that I have all over both of my arms...If this doesn't get better by Monday I'm definitely needing to have the Dr. give me something stronger...

heat

the heat has been getting to me. its gonna get hotter this week too. came home from work and slept for 2 12 hours now im watching tv with my feet up.

anyone have suggestions for dealing with the heat?

also my ankles and wrists have been unstable for a few days. i've been using my ankle braces and its been helping a lot. i wonder if its from the change in weather...

FMI

For my own information:

Immitrex doesn't really do much
Flonase give me migraines
I hate not being able to just rest my chin on my hand.

Also! I forgot to mention on my last post that I got the Sketchers Resistance Runners. They are AMAZING!!! I can walk the mall, disneyland, or down a few blocks! They are great. It feels like I'm walking on a firm air mattress. You know that feeling when walking where you the ball of your heal shoots terrible pain up and you feel it in all your joints, then your body just feels like collapsing on itself? Yah, don't really get that in these shoes. Highly recommended L)

FB Group

If you live in Southern California and have EDS join the "SoCal Zebra" Facebook group. It's open to everyone.

Lately

EDS:

I've been getting physical therapy since I moved. We've been working on my shoulder muscles. Activating muscles I've never used and relaxing muscles I've used too much. It's harder than it seems. Physical therapy has made a difference but I'm not sure how much difference it will make. Since I need to use the proper muscles in my shoulders to do any other exercises I need to keep up with this.

Also, I've been trying to work on my core muscles. I need to do that more. Both shoulders and core muscles are the basics to exercising. If I don't have those in order I'm in trouble. I've put on some weight and I need to get toned.

I bought a DVD that will teach me Tai Chi. I will get it and try it and then I will post here how it works out. Also, I tried the elliptical machine at my boyfriends gym. As long as I don't work my arms/shoulders it helps me with my cardio. I start at a 2 or a 3 and go for 10-15 minutes. I might get an old school gazelle machine to keep at my place to use instead of going to the gym.

I've told several people in my family about my condition hoping they too will look into whether they have EDS. My sister definitely has it, I think my cousin does as well as my mother. We won't know though unless they actually get the blood work done.

I really need to take my calcium and vitamin D. I don't want any bone density problems later that they say EDS can cause. But, the pills are a pain to take since I get nauseous quite often. I wish they had it in liquid form...

Tramadol has been my life saver lately. It gives me this euphoric feeling that keeps my brain from properly recognizing pain. My migraines only trigger I have found has been pain. As long as my pain is down my migraines go away. Kaiser has stopped covering Maxalt, so I really need to keep my migraines from coming.

My lidoderm pain patches work wonders on my shoulders. I only fear that I will have to use them longer than I really want to. I don't want to keep wearing them throughout my whole life. I really do want to get some control over my shoulders! Very frustrating. At least it's not a pill and doesn't get in my blood system.

Fructose Malabsorption:

This diet has helped significantly. I just avoid things such as bread and apples and turn to things such as rice and bell pepper. It's not too bad since I preferred those things anyways. I had some mishaps with protein bars...oops. stay away from those. Also I ate barbeque chips today, that was a no no.

I used to feel quite often that my body felt depleted of something. Now I realize that is because my body wasn't digesting the things I was eating properly. Now that I'm getting most of my nutrients to stay in my body rather than leave as quickly as it used to, I feel much better. I have more energy to use throughout the day.

I love love to bake. I actually prefer baking to cooking. The only things is now I realize my body can't handle sugar properly. My boss recently made a chocolate cake using yogurt. I ate the cake and felt fine. I'm really excited because this gives me a whole new area of baking sweets that my body can tolerate! I'm a much better baker than I am a cook so this is good news. :)

fructose malabsorption

I realized rather quickly this last year that I can't eat cake. I don't know what is in it that makes me feel sick quickly. I know that I am sensitive to sugar. I have IBS. My stomach gets nauseous and I drink some soda to soothe it. I don't know what to do about it. I also suffer from depression. I found out that fructose malabsorption and depression may be linked. Fructose malabsorption I'm going to look into this a bit more. I've always hated apples because although they are healthy I feel like it has too much sugar for me and I get a headache. I always thought I was hypogycemic but this may be the real issue for me.

update

I have great insurance. Especially since I have diagnosis established. Kaiser doctors for the most part are really helpful...
I told my primary doctor I was having more headaches. He refers me to the neurologist/headache doctor. I also get referred to PT.
I saw the neurologist this week and she referred me to the pain clinic. She had some suggestions but wanted to see what the pain clinic said.
Today I saw the doctor at the pain clinic. She was super helpful. I got prescribed Lidoderm patches for my shoulders. She wants me to wear them religiously on my shoulders every day. So far it is helping enough. Though today my spine was hurting pretty bad. Stupid EDS.
Anways, I say that my doctors are great because each of them take seriously my Chiari and Ehlers Danlos conditions. They take seriously my migraines. They take seriously my susceptibility to bleeding when I take NSAID's.
My neurologist suggested switching my depression meds to a pain prevention kind but my pain doctor said it would only help a little due to my connective tissue disorder. She knows her stuff! She said she has worked with several EDS patients.
I go in tomorrow evening for a checkup MRI to check on any signs of Chiari.
Cant wait to start physical therapy on Tuesday!

Here's what I'm taking/doing:
Celexa
Tramadol
Tylonal
Aleve
Calcium + Vitamin D
B Complex
Lidoderm patches
Tiger Balm
Blue Emu cream
Ice packs
Heat packs
Heel cushions

I see the pain clinic Dr in two weeks. I see my neurologist in a month. I see PT next week.

A Wonderful Resource!!!

http://thedysautonomiaconnection.org/

Check it out!!

Chronically Kyli's Story

Very Inspiring: Thank you Kylie! Your story is a support to all who are chronically ill.

Things that help me:

1) Maxalt for migraines
2) Tramadol for Ehlers Danlos flare-up
3) Celexa 20mg preventative for pain, used for depression/anxiety
4) Calcium and Vitamin D for Ehlers Danlos, also gives me energy
5) Vitamin B Complex for energy
6) ice packs for Ehlers Danlos flare-up
7) heat pack for migraine and Ehlers Danlos
8) wrist, ankle, and elbow bracing for Ehlers-danlos flare-up and when I expect to use joints more
9) Blue-Emu cream for muscle pain
10) exercises: elliptical machine, swimming, dance classes all at my own pace and I stop when I feel overheated


I ordered a home ultrasound unit. I can't wait to use it!

Pleased to Announce

only a spoonie would say that as the title..lol

I officially have the EDS diagnosis. I got some bloodwork on collagen and Im going in for an Echocardiogram sometime soon. Its not totally important to do right away so thats good.

Im blessed with some pretty good doctors at Kaiser.

another great link

TITLE: Epistaxis
SOURCE: Dept. of Otolaryngology, UTMB; Grand Rounds
DATE: October 16, 1996
RESIDENT PHYSICIAN: Stephanie Cordes, M.D.
FACULTY PHYSICIAN: Francis B. Quinn, Jr., M.D.
SERIES EDITOR: Francis B. Quinn, Jr., M.D.

"Delayed massive epistaxis following endonasal transsphenoidal surgery "

"Summary Objective. To describe delayed massive epistaxis, a rare but serious complication after transsphenoidal surgery.
Patients. Two patients underwent microscopic transsphenoidal surgery through a right endonasal approach for nonfunctioning pituitary adenoma. Severe epistaxis suddenly developed on day 8 and on day 13, respectively, after uneventful surgery. In each patient, the epistaxis was due to arterial haemorrhage from the left posterior nasal cavity. Otolarygologists failed to detect the origin of bleeding which was refractory to conservative treatment. Emergency internal carotid or external carotid angiography, performed during tight packing of the posterior nasal cavity, did not show abnormal findings; nevertheless, each patient was treated successfully by endovascular embolisation of the external carotid artery without further complication.
Conclusion. When severe delayed epistaxis follows transsphenoidal surgery and damage to the internal carotid artery has been ruled out, endovascular embolisation of the external carotid artery should be considered in patients refractory to conservative treatment. "
springerlink.com

maxalt to the rescue!

Had a terrible migrane since yesterday afternoon. Went to the Urgent Care near me and got Maxalt. Works great. Life is so much better without migraines... but im a bit sleepy because of it. totally worth the tradeoff...

dr appointment

My Internest GP doctor appointment went really well. We went over all the bloodwork that was taken and Im happy to announce that there are no blood disorders including von willenbord disease! And they also tested already for any lupup and other similar disorders. The only thing is Im pretty anemic and Im restricted from any asprins and such. I got my GP to refer me to a geneticist to test for Ehlers Danlos officially. I have a few relatives with chronic pain and joint problems who also can move hypermobile like me so that helped my case. It also helped that I have a previous dx of Chiari Malformation and surgery. Every day Im gaining more energy. So good report.

Possibilities

von Willebrand disease
History
The most common symptoms include nosebleeds, skin bruises, and hematomas. Prolonged bleeding from trivial wounds, oral cavity bleeding, and excessive menstrual bleeding are common. Gastrointestinal bleeding is rare.
•A common but nonspecific symptom is easy bruising.
•Prolonged bleeding after minor trauma to skin or mucous membranes is characteristic of vWD.
•Severe hemorrhage after major surgery is less common, but delayed bleeding may occur up to several weeks after surgery.
•Heavy bleeding is common after tooth extraction or other oral surgery, such as tonsillectomy and adenoidectomy.
•Menorrhagia is a common presenting complaint in women.
•Bleeding symptoms are often exacerbated by the ingestion of aspirin and are ameliorated by the use of oral contraceptives.
Physical
Physical examination findings are usually normal. However, patients may have physical sequelae, such as bleeding or bruises.
Link To Article


SLE
I want to be tested by a rheumetologist for SLE due to these past test results

Ehlers Danlos Syndrome
Refered to a geneticist to get specific dx for this. Hypermobility Demonstration

worry

im having bad anxiety tonight. today my head pain was worse, took more percocet and was extra nautous. On top of that i was extreemly tired and napped pretty much the whole day. at one point i was shivvering and needed to have 2 blankets covering me to stop. the morning wasnt so bad when it felt like i was just sleeping in. but the evening brought its looming scent and now i worry,.. i took some ativan.