BabySeal's Health

On the 21st I go see my dr for my hormones related to the headaches.
On the 28th I go to a GI specialist for the first time.
and on the 2nd I have my Neuro follow up.

My regular doctor sees me so often, he always remembers me. At least I keep him on his toes!

I chalk up my health to the bad draw of family genes and because I was 2 months premature I say it made an impact.

One time I went to a doctor many considered to be a "quack", but he was not, he just did now follow traditional get-em-in-get-em-out medicine. He did 28 blood tests; I was at this lab for around 6 hours. My thyroid, progesterone and testosterone were off a little, so I was on small doses of compounded hormone and FELT BETTER. We were talking quarter doses here. But all good things come to an end I lost my insurance, couldn't afford the meds. Fast forwarding to today, the traditional doctors would look at these lab tests and say I was still within normal limits, even though I still was experiencing symptoms.
Normal lab values = No problem = Find a Dr. who will listen.

My regular doc (he is good) set me up with this GI specialist because I have this problem where I have morning sickness. Non-pregnancy morning sickness... haha do you know how many times doctors have you questioning if you are pregnant by the time you leave the office? A 23 year old with morning sickness, they assume you're knocked up as soon as you say you're not feeling well. This has been going on 5 years, before I was on any meds. And I am just nauseous in general, but that could very well be medication related.

I also get throat spasms, but that could be triptan or acid related. Now THOSE feel weird.

I also have adult ADD, asthma (btw I quit smoking ), sacroiliac joint dysfunction, and of course MIGRAINES.

My immune system sucks to say the least. When my son brings home a cold virus he has a cold. I get the cold, then bronchitis, and am stuck to double doses of a breathing machine for a month. Its rough. I am sick more than I am well.

The SI joint dysfunction was fun (not). In a nutshell, my hips are separating from my spine. Its too loose and it hurts. The pain is worse than any migraine pain, but it is in shorter bursts thankfully. Can't really compare though, different things, different pain. When it flares up its hard for me to move or walk. I got some injections under fluoroscopy.. masks the pain, doesnt fix the problem.

I am 23, and I am so tired all of the time. This is the part I don't like. If I go to the store, I feel like I need a nap. When I wake up after 12 hrs of sleep? I want a nap! I am 23!! I find it hard to believe that this is as good as it is going to get. I am perpetually exhausted for no reason at all. I don't ever go out and do anything because I am so tired.

At least I'd like to hope it gets better than this..

Have you had a sleep study? It can diagnose about 70 different sleep disorders (not just sleep apnea...and there are several different types of sleep apnea by the way). There can be a lot of other reasons for fatigue besides sleep disorders though...chronic fatigue syndrome, fibro, other conditions, meds, migraines/headache, etc. Often its more than one thing going on. Definitely explore if there is something fixable making you exhausted. Good first step is to examine your meds, see a sleep specialist, and consider your overall list of symptoms as to if a grouping of them can be a condition which includes fatigue.

I haven't got any specific answers yet, but I have a fibro diagnosis, am on narcotics which don't help with the fatigue, and just got a sleep study done. Waiting on results. Hubby reports I make weird breathing noises in my sleep and during the study the tech told me I was only breathing through my mouth and snore. No wonder I am always so tired and congested. There can also be meds to help combat it. I was started on Ritalin while waiting for my sleep study & results, and its been great. Non-addicting and I don't feel wired or anything...just awake in the morning for the first time in years (my biggest problem is the first 3-5 hours of the day...after that I'm fatigued, but I don't nod off while driving or have trouble keeping my eyes open or anything). Best wishes.

I will have to ask about that at my next neuro follow up, they specialize in sleep disorders as well. I am prescribed Adderall 3x a day (Amphetamine Salts) and am still tired when I take it correctly. Ritalin didn't do much for me for my ADD, I was still about as focused as a flea.

Thanks for the tip!

If you actually have ADD, the ADD meds won't work for making you more alert / less tired, as they essentially work the opposite in that group of folks (make them more mellow and focused). Its the folks without ADD that the group of meds including Ritalin and Adderall can give more energy to. These meds release dopamine which can improve attention and focus in individuals who have dopamine signals that are weak (those with ADD). If a higher dose didn't work (which it wouldn't be expected to from what you said...it would help you focus but not help you feel more awake), you may need a different class of med, such as Progivil/Nuvigil, or a true stimulant in the amphetamine class (such as Dexedrine).

Provigil/Nuvigil can be pricey & insurance usually only covers them for Narcolepsy, and doctors typically don't like prescribing amphetamines. But, if you've failed Ritalin and Adderall, and they end up not finding a cause of your symptoms (ie. ending up at a diagnosis of idiopathic hypersomnolence), they may choose to try you on one of them. If the main goal was to make you more focused and not feel more awake, a higher dose could be helpful, as some folks need a lot more than others and doctors don't try hem on it. That could just make you more tired though! FYI Provigil interferes with all forms on hormonal birth control if thats applicable to you (one of the reasons I didn't consider it). Often doctors downplay that or don't tell you. Best wishes.

Listening to your story, it is scary how much of it mirrors mine! You are 10 years younger than me, but I can tell you that aside from the SJ dysfunction, I have battled these same things! The being tired all the time and not sleeping and pain everywhere and not being able to get out and do anything because of being fatigued all the time, have you heard of/considered fibromyalgia? Check into it. Ask your doctor about it.

tortoisegirl- I suppose you are correct! you explained it SO much better than I could have (damn topa brain!!) when I take the Adderall correctly my brain gets very focused, I become a cleaning fool, and could accomplish the world. But at the some time I am limited by my body it seems.

That in it self is an odd feeling to be focused and zinging in your head, yet your body is not at that level.

Because of the "manufacturer ___?*____" (I cant think of the word this is a bad day for me with the words... I feel like an idiot from the topamax.) Crap. The word where they cant make enough because the FDA is limiting production right now. Long story short it is hit or miss if I can find a pharmachy that has them in.

Chelle- I know!! Even from popping in to read your blog there are similarities there its crazy!! I guess we are ailment twins eh?

Yeah I also have been diagnosed with fibro, and some sort of unspecific auto immune thing. Problem is, there are so many other conditions to consider as well...fibro can be both not considered by doctors, or a jumped-to diagnosis. Some similar conditions are sleep conditions such as apnea, Lyme disease, chronic fatigue syndrom, depression, and arthritis. Not really sure what I have except that no one has been able to help me with it (both rheumetologists I saw said gave me the same diagnosis, and tried me on a handful of treatments that didn't work, then gave up). Glad I got the sleep study and am now on Ritalin as that helps make my morning easier. But, I still have all sorts of symptoms. Best wishes.

Oh Babyseal!

I just had to chime in and tell you how sorry I am that you are having all these medical issues.

Migraine is certainly bad enough, but then to have all those other issues, my goodness.

I am so thankful that my migraines did not escalate until my kids were older.

Bless your heart for being able to handle all you do and taking care of a little one to boot.

I hear you about the fatigue and just being too tired to do much of anything.

And then even if you do force yourself to do something, you just can't enjoy it.

You are doing the right thing by continueing to look for answers.

You are so young and seem like such a wonderful person.

I will be praying that these doctors can get together and help you get your life back.

Take care and know that we are here for you.

Cindy

Thank you all for your kind words. It means the world.